Sarcoidosis Answers for Physicians, Nurses and Patients

Here at SarcInfo, between 2002 and 2004, we identified the cause of Sarcoidosis, and successfully trialled a curative antimicrobial therapy. During 2005 and 2006 the US FDA designated the antibiotics Clindamycin and Minocycline as Orphan Products in the treatment of Sarcoidosis, and studies are ongoing elsewhere.

For information about this breakthrough, please post your questions at the current study-sites of the Autoimmunity Research Foundation.
 
This archive of the historic study is maintained by volunteers from the Foundation. The material here provides useful background, but most of this site is now out-of-date.

 

** Patient Tutorials **

 Click here to read "WHY DID I GET SARCOIDOSIS? WHY ME? 

  Click here to read "REMISSION IN SARCOIDOSIS"  

 How a Pathologist can see Bacteria causing Sarcoidosis 

"How does Doctor measure my ACE, and my D-metabolites?"

 Weaning from Prednisone

 Protecting your eyes in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Hypervitaminosis D Symptoms    The SarcInfo F.A.Q.

Medical Abbreviations          CBC Radio Show

Protocol Phase 1-First 3 months

  

** Papers for Physicians **

Antibacterial Therapy induces Remission 

Implications for Autoimmune Disease 
(Here is Fulltext preprint)

Antibacterial mechanisms for ARBs 

Antibiotics in Sarcoidosis- The 1st Year 

Rationale for abx in Sarcoidosis 

1,25-D and Angiotensin II

"New Treatments Emerge.."

Jarisch-Herxheimer in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Protocol Phase 1-First 3 months

The NIH ACCESS Study finds Sarcoidosis does not go away - Click here to see, and print, the brochure


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 Archive of Vit D and ACE Test Results to 7/29/2003
Author: Kathy Griffin (---.proxy.aol.com)
Date:   02-19-03 11:29

Trevor,
My doc phoned me today w/the results of my tests. He will send hard copy after I do a 24 hr urine test next wk.

Calcium-10
ACE-------------19 (normal range for my HMO is <52)
Vita D 25------18ng (normal range for my HMO is 10-68)
Vita D 1,25----72 (normal range for my HMO is 15-60)

If my math is correct, my D-Ratio is 4, which I realized is high and I'm tapering on prednisone.

I take 15mg of predinsone one day and 10mg the next. The following wk I will take 14mg one day and 10mg the next and so forth and so on until I'm down to 10mg every other day.

The ultimate goal for me is to taper off prednisone completely. I've been on the up and down rollercoaster of prednisone therapy daily since 1998.

In the past, when I'm down to 5mg every other day my cough returns. I use oxygen for all my activities and 50% of both lungs are fibrotic. I'm hoping with the elimination of vita D I will be able to successful taper from prednisone completely w/out coughing day in and day out. What are you thoughts?
Always Caring
Kathy
 
 Re: My ACE, 1,25 and 25 results are in
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-19-03 14:59

Kathy,
There is room to lower your 25-D. Certainly most folks achieve 12 ng/ml and some can maintain even lower than that by staying indoors more. This will have a direct effect on the 1,25-D level, as the D-ratio stays roughly constant over this range. Thus a 50% reduction in 25-D can yield a 50% reduction in 1,25-D

Your 1,25-D level, as you have figured, is very high at 72 pg/ml. This level has nothing to do with Prednisone. In fact, without pred it may even be a little (say 10%) higher.

The ACE reading is almost certainly being depressed by your Prednisone dosage, however. It is meaningless in this case. Luckily, the D-Ratio and the calcium can give us all the info we need in this case.

Your calcium is borderline high. This is not unexpected with such a high value of 1,25-D. I would also expect that your bone status is not good. Bone resorption and calcium imbalance are thought (by some researchers) to start at about 42 pg/ml.

As you lower your intake of Vitamin D even further you will (most likely) sense an easing of the fatigue and wheezing symptoms. To get the D-Ratio down to its normal 1.2, or so, you will need to reduce the systemic inflammation with antibiotics.

The antibiotic may not work very well until you can get the 1,25-D down, but you could try it. The only risk is unexpected herxheimer, so be careful as you start it. Doc will probably be more willing to try Minocycline now that you have shown that your 1,25-D is so high. Merck, (the doctors bible') says 45 pg/ml is the upper limit of normal.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Lana (---.dialsprint.net)
Date:   02-27-03 14:16

Author: Lana (---.dialsprint.net)
Date: 02-11-03 17:09

Trevor - Well, as the queen of procrastinators, I've finally pulled this off. I was tested and actually have my results back. They aren't as significant as they would have been if I had of had it done before I started the Doxy in early November of last year, and I apologize for that but there is room for improvement, I think. I know that I still have swelling going on because I can feel it in my throat. The tests were processed by LabCorp.
Vitamin D, 25-Hydroxy - 16.2 ng/mL
Vitamin D,1,25-Hydroxy - 41.7 pg/mL
ACE - 32 (I am still on 5 mg. of prednisone a day)

My Dr. said everything appeared to be "normal".
If I am figuring this correctly, my ratio is 2.57 which would coincide with my feelings of where I think I am. I know that I am a lot better than when I started reading this forum (and began antibiotic therapy), but I also know that I have a ways to go.
Since I had that strange little occurence when I took my 2nd 40mg dose of Benicar (after 12 hours) , I've held off increasing it but now I guess it is a necessary thing to do. For the sake of research, when I took that 2nd dose, after about 47 minutes, it felt like someone had injected me with liquid fire - I believe it to be vascular. I didn't have any trouble breathing and it lasted for 2 to 3 minutes. I do have trouble with panic attacks, but this came "out of the blue", there was no increased pulse or breathing. And I was not thinking about anything happening when it occured. I was just sitting in a recliner resting. Anyway, that is where I am at and will wait for your response and maybe an "ATTA GIRL!!!" for finally getting this done. Just kidding - it is insane, though, that when someone is trying to help you, some of us do not go get our tests run . . . .Lana

Trevor - I posted this previous message on top for reference regarding my new information. My Dr. wanted to check my kidney function because of the Benicar so on 2/21/03 I went and had blood drawn. I had been taking the Benicar for maybe a couple of weeks or a little less. Anyway, on a whim, I said Why don't you test my D's again since we're taking blood anyway? and she said OK, sure. I have not been able to take more than 40 mg of Benicar a day and I feel fine doing it that way even though it is different than what you said. My Dr. called me last night with "dramatic changes" in my 1,25D. She was perplexed and very intrigued by the use of Benicar to achieve these results - and I believe impressed with you as well. The new levels are:

Vitamin D, 1,25 Dihydroxy 19.3 pg/mL
Vitamin D, 25-Hydroxy 15.6 ng/mL
ACE 25 U/L
Creatinine levels all normal

So my new ratio is 1.24 Yeah!!!!!!!!!!!!!!! Down from 2.57 when last checked. So what do I do now? Continue with ARB, doxy, etc. ?
I am down to 4.5 mg of pred a day. Thanks and look forward to hearing from you...............Lana
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-27-03 14:36

Lana,
You might be interested in the results from another SarcInfo'er who had her 1,25-D measured before and after starting Benicar. Here is what she wrote:

"My initial results done on 1-17-03 were 25-D at 49 and 1,25-D were 75. I was on the Benicar for about two weeks and Doc decided to check the D levels just to see what was happening because he is very curious about this. My levels came back at 25-D at 42 and 1,25-D at 35. I have now been on the Benicar for 3 weeks at full dose (3 per day), and my Prednisone is at 4mg per day dropping to 3mg tomorrow"

So her results are similar to yours (1,25-D cut in half, approximately). That probably explains why some folks have so many profound side-effects when they start taking the Benicar - as the 1,25-D drops the PTH and other hormones all have to readjust.

Well, the Benicar will definitely be helping any kidney vasculitis (the effectiveness of ARBs on nephropathy has been proven) and it should help you feel a lot better too. I would continue on the doxy and suggest to Doc that you might start to try and wean off the pred. Then raise the doxy or see if Doc will shift to Minocycline now...

..Trevor..
ps: keep an eye on the 1,25-D every couple of months, and start a low dose Vit D supplement if it falls too low (15 pg/ml is probably too low, 1.5 standard deviations below the mean, and Natures Life Calcium Softgel Code#557 has only 66 IU of D in each softgel, giving you good control of the supplementation).
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   02-27-03 16:51

Lana,

It sounds like you are unusually sensitive to the effects of Benicar as you are only taking 1/3 the recommended dose. It lends credence to the statement " the dose must be individualized". Great idea to have the doc check the D again after only a couple weeks. Perhaps we should recommend that for others just beginning as it seems to make a big impression on the docs.

I think you will experience more changes as the Benicar helps the Minocin do its job and you decrease the Prednisone so it isn't interfering.

Thanks for the good news!

Meg
 
 Re: My Vitamin D and ACE Test Results are back!
Author: DJ (---.tnt4.billings.mt.da.uu.net)
Date:   02-27-03 17:39

Hi again all!

Got my lab results back today.

ACE 47 U/L (8-52)
Vitamin D (1,25-OH) 43 pg/mL (15-75)
Vitamin D 25-hydroxy 26 ng/mL (10-68)
Ca 9.2 mg/dL (8.5-10.5)
ESR 50 mm/hr (1-20)

I have really been restricting sun exposure and Vit. D (even before this draw was taken) and am feeling pretty good unless I have to go out - then totally bedridden for at least 24 hrs, however, the bad times are getting shorter and the good times longer.

Going to see my GP to discuss treatment on Monday. Trevor, do you think this D ratio requires ARB before the antibiotic, or just more natural D control(diet and exposure) to run out my fat reserves? (Boy I wish I could run out of fat! hehe)

Thanks for all your help.

DJ
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-27-03 18:04

DJ,
Yes, you can see the effects of controlling your D intake. Your 1,25-D is now just a smidgin under Merck's maximum value. I guess that would be low enough to make Doc think there is nothing to worry about (even though 97% of the population would have values lower than that...)

The 25-D is higher than I would like, due to fat storage and D intake, and as you get that down the 1,25-D will also fall. Somewhere around 12 ng/ml is achievable, which would put your 1,25-D close to "normal".

ESR is high, which is unusual. Not sure if that indicates anything. But in any case the minocycline will probably go after anything that could be elevating your ESR.

My guess is that you will be OK with the antibiotic, although you may need to wait a while for it to kick in, because the 1,25-D is still high. The 25-D is high enough to give you herx, but it will probably be manageable - but this is all crystal-ball glazing, and 'your mileage will differ'. I suspect that if you can get Benicar prescribed it will make you feel pretty good indeed, especially as it can suppress the effects of occasionally going out-of-doors.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Fernando (212.163.35.---)
Date:   03-06-03 03:21

Dear Trevor,

Though Spain is usually sunny in the south, is not as much sunny in the north (have you heard about the "Prestige", the oil ship which sank in Galicia? We live there...). In winter it rains a lot (almost dayly).

Do you think the 1.25 D levels would be higher in summer?

About 4 months ago she got the BP checked several times in a machine (not manual), and the results were extrange (the low too high, and changing fast), so we thought the machine was broken...or may be not because of sarc?
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-06-03 03:38

Fernando,
Blood Pressure turns out to be a very good indicator of the body's 1,25-D status in sarcodosis. It provides important data to help you understand this disease. It is a good investment to buy a good, computerized, blood pressure machine and use it morning and night and whenever you feel a little strange.

The little blood pressure machines where you pump up the cuff by squeezing a small rubber pump and which use a computer to measure the BP are inexpensive. Shop around and try to get one. They are about $30 in the US.

Sunlight is intense enough to make a sarc patient very ill no matter where in the world you live. The bugs hypersensitize the skin so it converts too much 1,25-D even on being exposed to extremely small amounts of indirect outdoor light, or light through windows. When the bugs are killed the skin gets back to normal and tolerance of the outdoors returns.

..trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Terri (---.proxy.aol.com)
Date:   03-09-03 10:11

Hi Trevor -- I have my D levels, but I can't find my ACE level, which was tested on a different day.

VitD Hydroxy 26
VitD Dihydroxy 38

I had been eliminating Vitamin D from my diet for several weeks before this was drawn and felt immediate results. I'm not on any Prednisone, but I am taking Trental to help with pain in my hands and feet. My fatigue is SO much better.

Are these test results good?

Thanks, Terri
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Fernando (---.red.mundo-r.com)
Date:   03-09-03 14:29

Trevor,

Somewhere I read that there is an antibiotic, not minocin, which works better with eye involvement, could you tell me which one, please?

My wife has no lung involvement (at least that we know), but she showes bumps and nodules in her fingers. Is this a proof of sistemic inflamation?
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   03-10-03 05:55

Terri,

You 25-D is a little higher than we'd expect but is probably due to your previous intake of Vitamin D. Your 1,25-D is not terribly high but definitely higher than average.. If your sarcoidosis is in areas not well perfused by blood such as skin and nerve, the 1,25-D can be artificially low.

Your next step is to get started on the Benicar (40mg every 8hrs) for a week or two and then begin the Minocin. Keep avoiding all sources of Vitamin D.

Let us know if you have any more questions.

Meg
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   03-10-03 05:59

Fernando,

The antibiotic that has shown to be effective with eye and ear involvement is Bactrim DS. It's taken for a short period, a week or so, at one tablet every 12 hrs. You can take it with or without Minocin. But you shouldn't take them together if you are still have major Herxheimer reactions from just the Minocin.

Take a look at the Antibiotic thread at URL http://sarcinfo.com/phorum/read.php?f=1&i=2191&t=2191

The bumps and nodules in her fingers may well be sarcoidosis.

Meg
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   03-10-03 08:52

Fernando,

You can find a few pictures of sarcoidosis nodules in the Skin Sarc, What does it look like? topic.

Belinda
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Margie Comstock (---.cvx40-bradley.dialup.earthlink.net)
Date:   03-10-03 15:15

Trevor,

I'm a member of the San Francisco Sarcoid Support Group and a friend of Kathy Giffin. She is in the hospital now with Lung problems and I will call you regarding her and possibly meeting you at the LA Sarcoid Conference March 15th.

I have Sarcoid in the lungs which was diagnosed by process of elimination via thorasic biopsy and infectious disease blood serologies done in 2000. The reason I am writing now is that I received my blood test back after fighting with my primary care to get them taken becasue I feel so sick now. He says there is nothing wrong with my tests so therefore has no suggesstions as to why I feel so bad. He also has told me that "there are no Sarcoid specialist" so therefore he will not refer me to any. I have talked to him on many occasions and I don't trust him or have nay confidence in his work. I am looking for another primary care doctor I can work with. However, I have shown my present Primary Care Doctor your papers on Vit D issues and ARBs and pathology and antibiotic treatment and he said he won't persue this course of treatment. I am so frustrated. I am feeling horrible with much pain, fatigue and many other symptoms all over the "map" from urination problems to earaches to re-occuring pneumonia.

I am presently on 15 mg of Pred and have been on varying doses from 60 mg. down to 2.5 for the past 3 years, depending on my breathing. I have gained 60 lbs. since starting on Pred and I have developed both diabetes and high blood pressure because of it. My hips are very painful but I have had multiple MRIs, CT Scans, etc. and they do not have any bone loss because of the Pred. I had a lot of protein in my urine (doctor wouldn't give me amount) and am now on 320 mg of Diovan once daily in AM - this last urinalysis did not show any protein since going on Diovan. Can you give me an idea of what might my blood values mean listed below- thank you!

Vitamin D, 25 Hydroxy 29 ng/mL
Vitamin D, 1, 25 Dihydroxy 61 pg/mL
BUN is 24 mg/dL but Creatnine is normal at .07
Albumin is low at 3.2 g/dL
Calcium is normal at 8.9 mg/dL
Triglycerides is 79
HDL is 61
LDL is 43
Total Cholesterol is 120

With my CBC:
RDW is 17.7
Lymphocites are low at 12 and Eosinophils are high at 6
ESR is high at 36

and one immunology test was puzzling:
Antimyeloperoxidase is High at 56 U/mL

My ACE has not been tested lately but has always come back normal.

I have just seen a Cardiologist who suggests that my arrythmias and the antimyeloperoxidase level is caused by Sarcoid in my vessels between the lungs and heart.

I have taken out the Vit D from my food and am avoiding the sun as much as possible. Do I need to change the dosing on Diovan? Any comments on these values would be most appreciated.

Margie Comstock
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-10-03 15:40

Margie,
I am sorry to hear Kathy is in the hospital.

The dosing of Diovan at 320mg once daily is not very sensible, I am afraid. The ARBs all work better for Sarc patients if the dosing is spread out during the day. In your case you might find that 160mg in the am and 80 mg 8 hours later with another 80 just before you go to bed works out fine (about 80mg every 8 hours). You should be able to drop the morning 160mg back to 80mg once the Diovan starts to take control of your Blood Pressure and your Sarc symptoms. By the way, what is your BP and how much does it vary?

You have a high 1,25-D level, just like Kathy did, and at 61 pg/ml it is well above the 45 pg/ml normal maximum, and will be giving you quite a bit of trouble. It will drop as you get your 25-D down to the 12 ng/ml level I suggest, but the fat storage makes 25-D change very slowly. If you totally cut off your D input now then it would be about 2-3 months to get to that level. Nevertheless, cutting down your D intake is one thing you have to do, and no doctor can stop you doing it

The arrhythmias most probably are caused by sarcoid inflammation in your cardiac tissues, and working on getting that 1,25-D down to a good level will certainly help your heart to function better.

You know the Prednisone has to go, wait until you get your systems stabilized as you get your 1,25-D under control, and then see if you still need all that prednisone

Let me know what you want to do this weekend, I am happy one way or the other (but obviously my main wish is for Kathy to get better, and get out of the hospital...)

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Trevor Harris (---.plus.com)
Date:   03-12-03 10:54

I started Minocin on the 10th Feb and had my blood tests on the 4th March and I have just got the results

25D 14 ng/mL
1,25D 59 pg/ml

So I have a D ratio of 4.2

I started Diovan 80mg every 8 hours last Monday which seems to be having quite an effect. I have now got rashes on my legs and my skin is very itchy.
The joints in my hands have also become painful. My main symptom though is a cough which seems to be worst at night and make it very difficult to get to sleep. Please can someone tell me if this is normal and how long will it be before the cough goes. Thanks.
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-12-03 11:10

Ah, but look on the bright side, Trevor, you have been controlling your 25-D (the D intake) pretty well

Hmm. Diovan shouldn't give you rashes, but as long as you can put up with them for a while they are probably transitory. Still, I guess if Diovan gives neurosarc-folks psychedelic dreams during the withdrawal period it might give other folks rashes. Hmm. Interesting...

You are starting from a high level of 1,25-D and the Diovan will be reducing that. Maybe in half. So you will get quite a few symptoms while your body adjusts. It usually lasts about 2 weeks, but maybe somebody else can give you more precise info - it has been years since I first started on ARBs, and I really can't remember the first few weeks.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Paul (---.jeack.com.au)
Date:   03-12-03 13:37

Hi Trevor,

Units Ref Range

ACE 53 U/L 40-140
25(OH)VitD3 89 nmol/L 23-94
1,25-(OH)D3 163 H pmol/L 36-120

Samples taken at 10 AM with no visible inflammation (eye and skin only known organs involved) and still on MTX.

I think this converts to:-
25D 35 ng/ml
1,25D 68 pg/ml
Ratio 1.94

I am surprised at the high level of 25D since I have been trying to avoid any excessive sun exposure but my work as a van driver makes total exclusion impossible. Maybe the small amount of margarine(Vit D fortified) that I was eating has caused the high level.

I have been on Avapro 150 mg every 8 hours for 3 weeks and have now stopped Prednisolone and MTX. Hope to start Minomycin in about a weeks time.

Any comments gratefully received.

Paul
 
 Re: My Vitamin D and ACE Test Results are back!
Author: David & Sylvia (---.proxy.aol.com)
Date:   03-12-03 20:09

Hi Trevor, the moment we have been waiting weeks for has come to pass but the lab messed up David's Vit D tests. I am going to call tomorrow to see if there is anything salvagable but I doubt it. So what we have is:

ACE: <7 (9-67IU/L range): remember he is on lotensin so this means nothing, right?

1,25: 142: ARUP, INC Salt Lake City

Taken on 3/1/03

It sure would be nice to have had the 25 D number but this number alone says a whole lot. We would like your comments.

As an update to previous communications, David is much better than 2 weeks ago. He ended up dropping 6 meds. Between the chiropractor and the gym he is feeling much better. He had 2 fantastic days back to back but then his foot got inflammed possibly from too many pool exercises at the gym or just the sarc (the foot--another long story). He plans to take a Minocin tomorrow for the first time in 3.5 weeks. We are curious to see if his herx will be as severe.

We are a bit baffled by the 1,25 D number. To our knowledge, he hasn't ingested any D in months now. He hasn't had any fish since 2/10/03. He always covers up when going outside and wears sunglasses but not full covered ones like the NOIR. He tried those but they were too small for his head and we had to return them. He doesn't wear sunglasses inside but has dimmed the computer screen. We keep the blinds closed on sunny days.

Should we do the Vit D test every 30 days? Does it change that rapidly. It would be really nice to be able to figure out what is causing such a huge number.

As always, thanks so much. Sylvia
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-12-03 20:30

Sylvia,
Check that the 1,25-D was in pg/ml and not pmol/L, but I assume it was.

1,25-D is generated from the 25-D by the inflamed tissue. So if you have a lot of inflammation there will be a lot of 1,25-D generated, even from a low starting 25-D value. You can cut down the 25-D, although it takes about 2 months for each halving of any fat storage of 25-D to occur. Obviously the contribution due to foods and sunlight would already have disappeared.

1,25-D is the active hormone, and it is no wonder David is feeling so sore if his 1,25-D is 142 pg/ml.

I am not sure if his eyes are sensitive, but this is probably being overridden by his high circulating 1,25-D in any case. The NoIR sunglasses are surely not that big of a deal for a month or two, in order to heal? They have more comfortable styles for indoors, and he could try the lighter lens I suggest, the 202 series...

Given the extreme value of 1,25-D I expect David will experience withdrawal as he goes onto a full ARB blockade, but I see no other way of getting the 1,25-D down into a safer region quickly enough. A little higher 1,25-D than this and I would be expecting cardiac flutters and the like, and we don't want that...

..Trevor..
ps: to save money, you really only need to run the 25-D test now. This does not change very fast, and will not have shifted much since 3/1/03. If they will do both to correct their error, then that is better, of course.
 
 Re: My Vitamin D and ACE Test Results are back!
Author: David & Sylvia (---.proxy.aol.com)
Date:   03-13-03 06:54

Thanks for the idea on doing the 25-D now as he is getting his cortisol checked today. I will get the doc involved if needed as the 25-D was ordered.

The NoIR sunglasses were too small, he has a large head size but I think we will be looking locally for something. We obviously have to do something.

What do you mean when you say 'a full ARB blockade'? Remember he is taking Benicar q8h now for about 6 weeks and was bid prior to that for 2 months. But with this new data, should he increase it to q6h for a few weeks to help his system????

I read last night that the Minocin herx may be worse with a high 1,25 D so I have discouraged him from taking one today.

I have likened all of this to peeling off the layers of an onion. As we peel a layer off another is exposed. We then need to figure out what that layer is all about and peel it off. Some place, hopefully not too many more layers, a healthy man will be found. But since we don't know how big this onion is, it remains a puzzle of sorts. I like this kind of a challenge but not particularly when a person's life is at risk. The mention of cardiac fluttering just kicked my adrenals into action.

We are going to set the labs up for monthly until we get this under control. It will be easier to try to figure this out.

Thanks. Sylvia
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-13-03 07:21

Sylvia,
Oh. I had forgotten David was already on Benicar. That makes it likely his 1,25-D was even higher. Oh. No wonder he was feeling off-color

There are NO sunglasses except the NoIR and the RayBan G15 lenses and the Zeiss ranges that can protect sarc eyes properly. Maybe you will need to get the NoIR lenses fitted into some comfortable frames as I describe in this document.

I think you will find the onion has not as many layers as all that... but it is real hard to figure out how to peel them. I suspect that the gains will be fast now. And I suspect that David may have a pretty high 25-D, which will give you something concrete to focus on. You should be able to phone the lab for results in about 3 days.

Sorry about the cardiac flutterring - I don't mention it much, but I don't believe in hiding things from people either. Cardiac complications are not yet officially recognized as being due to 1,25-D but I detailed my thoughts on the matter in this eLetter on the topic at CHEST, the ACCP Journal.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   03-13-03 07:29

Sylvia,

Did you talk to NoIR's customer service people about needing larger frames? When I ordered my glasses, they directed me to a smaller frame when I told them I have a small face and glasses tend to fall off. Perhaps they can mount the amber lenses in a larger frame.

Also, when I was extremely sun sensitive, I had to keep my drapes and blinds closed all the time (not just on sunny days). Otherwise, I broke out in skin spots on my forehead and neck. Keeping the blinds closed all the time could help reduce David's vitamin D faster.

Belinda
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-13-03 07:34

Sylvia,
Another thought - one other SarcInfo'er with a 160 1,25-D has been emptying out the contents of the Minocin capsules to leave a dose of about 30mg, which has made her herx bearable. You might consider discussing that with Doc. Brown's book talks about 10mg capsules (but they are no longer available).

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Trevor Harris (---.plus.com)
Date:   03-13-03 08:41

I have discovered that my blood test results are in SI units:

25-D 14 nmol/L 5.6 mg/ml
1,25D 59 pmol/L 22.7 pg/ml
D Ratio 4.0

So my 25-D is very low and my 1,25-D is normal.

I have been diagnosed with

Lupus anti-coagulant
Throbocytopenia
Sarcoidosis
Gilberts Disease

Please can someone tell me why I might have such low D levels.
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-13-03 09:04

Hmm,
Not sure if I believe that they are in SI units. You should get a copy of the lab report in your hand. Or call the lab directly - they will be able to tell you. Frequently the European labs use US units for these tests, because they are using US FDA approved calibration standards and US FDA test kits.

My doubt comes about because I know how much work it took to get my own 25-D down into the range you are in (< 8ng/ml), I doubt you have put as much energy as I did into achieving that. Remember that around 12 ng/mol is what most folks seem to target.

Anyway, it doesn't affect your D-ratio, about 4, indicating significant inflammation, which is in line with your (various) immune diagnoses. You can be pretty sure you have an immune dysfunction - what the US FDA calls
mild or subclinical illnesses marked by dysregulation of 1,25-dihydroxyvitamin D synthesis (e.g. .. sarcoidosis)

..Trevor..
ps: Yes, folks, even though every eminent pulmonologist says that there is no such thing as dysfunctional 1,25-D in sarcoidosis, there is at least one free thinker at the FDA who wrote up this report...
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Trevor Harris (---.plus.com)
Date:   03-13-03 09:41

I have got the actual report faxed to my gp

25-Hydroxy Vitamin D 14 nmol/L *(---) (30-100)
1,25-Dihydroxy Vitamin D 59 pmol/L (*--) (43-148)

I even phoned the Clinics Pathology department and they assured me they were correct. The 25-D was measured at the 'Charing Cross Hospital' and the 1,25-D at an International laboratory in France. Is it worth me pursuing this futher?
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-13-03 09:45

Trevor,
No, it is not worth it. Your D-ratio is high, and that is really all you need to know. You have done an excellent job at keeping your D-intake down, and so you should have little herx when you start the minocycline. That is what you need to concentrate on, now, IMO, the CWD antibiotic therapy.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Paul (---.jeack.com.au)
Date:   03-14-03 12:05

Hi Trevor,

I posted my results earlier in this thread (03/12/03) but have not received a reply. I realize how busy you must be, but when you get a chance, any comments on my results would be most appreciated.

Paul
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   03-14-03 14:13

Hi Paul,

You might take another careful look at your diet after reading the thread on Vitamin D in foods. Also, Vitamin D is stored in your body fat and takes a few months to deplete so your continued efforts at avoidance will eventually succeed. Are you wearing the NoIR sunglasses and covering all exposed skin when you are outside? I know this is inconvenient but it does help.

It sounds like you have been working hard to get well; getting off Prednisone and MTX. The Avapro should have lowered that 1,25-D somewhat so you won't have so much Herxheimer reaction when you start Minocycline. The antibiotic will also work better with the inflammatory blockade allowing better tissue perfusion.

I know this is hard work. Congratulations on being proactive in your health care. Let us know how the Minocycline affects you.

Meg
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-14-03 15:06

Paul,
Sorry to miss your posting. This is the data you reported:

ACE 53 U/L 40-140
25(OH)VitD3 89 nmol/L 23-94
1,25-(OH)D3 163 H pmol/L 36-120

It seems as though your lab is using the different ACE assay method, one that gives a higher measurement than we usually see. Looking at the ACE lab range, this measurement tells us little.

Your 25-D is high, at 35.6. As Meg says, this is stored in body fat, and the fat reserves halve every 2 months or so. It looks as though you were on some sort of D supplementation within the last few months.

Your 1,25-D is also high, at 62.7 pg/ml. At this level a sarc patient is usually feeling pretty sorry for themselves.... Although the D-Ratio is only 1.76 it will rise a little as your 25-D settles back to a more average value. This is because your kidneys will start to manufacture 1,25-D again as its level drops.

Was this measurement taken before or after starting the Avapro (an ARB will lower the D-ratio and the level of 1,25-D)

..Trevor..
ps: You did a brilliant job at getting these tests run in Australia... It's nice that they tell us so much...
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Paul (---.jeack.com.au)
Date:   03-17-03 12:48

Trevor,

Sorry for not replying earlier, but I was away for a few days.

The tests were done the day before I started on the Avapro. I was not suffering any inflammation and have been almost symptom free since reducing exposure to sunlight except for when I ate the fortified margarine. I can only imagine what my D values must have been when 20mg of Prednisolone would not stop the inflammation earlier. The best way of getting the tests run as you undoubtedly know is to find a supportive doctor (easier said than done ).

Meg,

Thank you for your reply.

Yes, I have been looking at my diet since getting my test results. The only known fortified source of vitamin D was margarine but I have since eliminated natural sources such as fish and eggs at least until I get the 25D level down. As for covering up outside, I do my best but it's pretty hard when you have to work in 35 C degree temperatures ( 95 F ).

The further I go down the path of Trevor's theorem, the more convinced I am that this is the answer.

Thank you all for your time and patience, but especially for your knowledge.

Paul
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Margo (---.adsl.duke.edu)
Date:   03-19-03 19:05

Trevor,

Just got the results of blood work done on my daughter in early March. (Because her 24 hour calciuria was extremely low, the pediatric pulmonologist talked to an endocrinologist about some blood tests to run. These were all done just prior to starting Avapro.)

Vit D, 1,25 dihydroxy: 110 PGlMLref for infants and children: 15-90 pg/ml]
Vit D, 25-hydroxy: 12 NG/ML for child and adult: 10-55 ng/ml]
Parathyroid hormone, intact:
Calcium, ionized 1.26 mmol/L [ref 1.20-1.37]
PTH, intact moleule 107 pg/mL [12-72]
-----------------------------------------------------------
Alkaline Phosphatase: 621 U/L [30-330]
Albumin: 4.2 g/dL [3.5-5.4]
Protein total: 7.3 g/dL [6.0-8.0]
Calcium: 9.6 mg/dL [8.6-10.6]
Phosphorus: 3.9 mg/dL [3.5-5.5]
Magnesium: 2.2 mg/dL [1.7-2.3]

Her previous D-ratio was 70/15 or 4.6, with the tests performed by a different lab. Her alkaline phosphatase has been steadily rising, and seems to correlate with the reduction in oral steroids. Because she has a dairy intolerance/allergy, her consumption of foods containing calcium is quite low. (Prior to November, she took multi-vitamins with calcium.)

I would appreciate any thoughts about these labs. In addition, I will post some questions on the "general questions" thread.

Thank you.

Margo
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Catherine (---.rev.o1.com)
Date:   03-19-03 20:10

My tests are finally here:
Done by Specialty Labs: Vitamin D (25-hydroxy) 26.0 ng/ml (10-60)

Vitamin D (1,25-dihydroxy) 21.6
Ref. Range (14.0-78.0)

ACE 27 Range ( 9-67)

This looks to me to be normal . So , what now???? I do not have granulomas currently. I had been off of prednisone and methotrexate for only a few weeks when the tests were done. The same for vit. d in my diet, stopping fish oil capsules, etc. just weeks before. I do not know where to go from here. Trevor, what is your opinion. ???????
Help !~!!!!! I do have severe pain and severe fatigue, recurring eye irritation, inflammation, chest pain, etc.
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-19-03 20:30

Catherine,
The most likely scenario is that there has been an error in handling or analysing your blood for the 1,25-D test. I will write to you by email with further details.

Margo:
A D-Ratio of 9.1 is quite high, that is consistent with the symptoms your daughter is reporting. The PTH being high is most probably as a result of the extremely high 1,25-D level. Alkaline Phosphatase is a marker of inflammation, and it also tends to rise when the 1,25-D is elevated.

I will answer your questions on the 'General' thread.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Brian (---.ne.client2.attbi.com)
Date:   03-20-03 10:15

Good Afternoon Trevor,

I wrote to you on 2/22 regarding some lab work that I had done regarding my sarcoid. I have a couple of more questions for you.

Back in early December, my ACE level was 95. Monday, 3/17 I had my ACE tested again, and it is 100. I also had my vitamin d-25 tested again, and the level is 16, where about 5-6 weeks ago it was 22....I have stopped drinking milk, but still do eat canned fish about 2-3 times per week. The doctor refused to test my vitamin-d 1,25. He said it is not a relevant number. I argued it with him until he told me that I could take it up with the pulmonologist that he has referred me to in Boston. He also refuses to prescripe any antibiotics for me.

As a refresher to you, I am a stage I, diagnosed in early January, after several months of symptoms.

Is the increase in my ACE level something that I should be worried about, or is the decrease in my vitamin d-25 more important. My vitamin d-1,25 was low last time, and I had a ratio of about 1.5 when my ACE was 22.

My main symptoms are still tightness in my chest and fatique. Every 1 1/2 to 2 weeks I get a period of about 1-4 days when the tightness in my chest and my breathing is very difficult. My eyes checked out fine, and I had an EKG that was fine.

Seeing as I won't get into Boston for about 3-5 weeks, and even when I do there are no guarrantees, should I just take the doxycycline that was prescribed for my face about 6 months ago. I have 2 refills left, and I am considering just taking them, because I am so frustrated at the stonewalling tactics I've received. I did give my PCP the literature from this site, and he just brushed it (and me) off saying that none of it is proven and that none of it has been peer reviewed. He said that he cannot justify giving me any antibiotics. I am quite aggravated at this point.

Any advice that you may be able to provide will be much appreciated.

Thank you,

Brian
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-21-03 12:17

Brian,
The increase in ACE is something that your doctor should be worried about, IMO, especially as he refused to take your 1,25-D data. The 1,25-D would be very valuable in figuring out what is happening IMO.

The fish does not seem to be doing you much harm, but I cannot understand why you risk possibly slowing your recovery by continuing to eat it. You really only need to focus on recovery for 3, maybe 6 months...

Surely you have a local doctor who will help you? That is what you need - some help - and clearly you are not getting it. An ACE level of 100 would be above the normal range for that assay, I think. Check it out out on the lab report and see. Surely your current Doc should have been alarmed?

Yes, 2 refills of Doxycycline would go a long way, as the dosage you need to use is identical to Minocycline. It seems to be just about as effective. So your refills would last a long time. There is no way I could advise you to take any drug without the advice of your Doctor, however. I am just not licensed to do so, nor am I in a position to offer you emergency medical care if you need it. That's why finding a supportive Doc is soooo important.

..Trevor..
ps: as for "peer review".. let's wait a few more days and see what happens...
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Kathleen (65.121.96.---)
Date:   03-21-03 18:22

Trevor Harris -

I also have rashes - and have throughout this whole sarcoidosis episode! The rashes and itching are all over (plus parasthesias/numbness in my legs). The worst is my face - it was okay for a while after beginning Minocin, but I seem to be hitting a plateau - for about a week, my chest pain came back, although it is gone again...but I have constant facial rashes - my eyes are itchy and irritated; my cheeks are bright red and very hot - so hot, it can keep me awake at night! Hopefully, it is the bugs in my skin coming out - hence the herxheimer...

Kathy in Wyoming
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Jan Lewis (---.lgeenergy.com)
Date:   03-27-03 11:49

Yippee, whooo hoooo, stupendous!!! I can barely contain my excitement!!!!!!!!!! I just got my second bloodwork tests back and they are:

1,25-D = 25.6 (two months ago 51.6)
25-D = 10.4 (14.7)
A.C.E. = 98 (106)

That A.C.E. is still high but boy do those other results look great. I am thrilled to be making such good progress with those two drugs. I am sitting here with tears in my eyes at the sheer thought I will beat this thing yet.

Thanks to Trevor!!! and Meg!!!!! for your support and encouragement.

(Now if I can get this back thing resolved, I'll be practically as good as new.)

For the rest of you, be encouraged.
Best regards.
Jan
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-27-03 12:28

Jan,
Because the ARB stops the inflammatory cycle by interrupting it in the middle, you might find that more ACE and Angiotensin are generated in an effort by the body to overcome the effects of the angiotensin receptors that are all blocked off by the ARB. So the ACE may take another month or so to start to drop.

Looks like everything is on track, though, congratulations.

..Trevor..
ps: Keep that restriction on your D intake. When your 1,25-D falls below 13 pg/ml I suggest taking one Nature's Life Calcium softgel (code 557) every day, or every second day. These are designed to deliver one third of 200IU = 66 IU of Vit D in each softgel, and are the smallest reliable D supplementation I have found.
 
 Re: My Vitamin D and ACE Test Results are back!
Author: swc (170.135.241.---)
Date:   04-08-03 09:54

Hi Trevor, and all,

My test results are finally back:

1,25-D=30 PG/ML
25-D=25 NG/ML
ACE=24

I am currently on 10mg Prednisone daily. I am tapering off over the next eight weeks. When I was diagnosed (9-02) my ACE was 94. Six months ago on 20 mg Pred. it was 7. My breathing and fatigue have worsened as I have tapered from 20mg. Pulmonary doc suggests increasing dosage. I however, refused and asked to be tapered as quickly as possible. I would rather deal with the symptoms of the disease than to continue with the Prednisone.

You may recall that I also have RA and am going to see a doctor next week that is using Dr. Brown's protocol on RA patients. So, obtaining the antibiotics will not be a problem. My questions:

1. He will want me to start with an initial I.V. dose of the antibiotic. Given my test results do you belive that would be safe for me, or would I likely have severe Herx reaction?

2. He likely will not have used the ARBs. Is there a quick way to describe to him what pupose they serve?

3. Will it be effective to start the antibiotics immediately or should I wait until I am completely off the prednisone?

4. Strange as it may seem, I am a little disapointed in my test results. I was expecting worse, which would certainly explain the way I feel. Does this indicate that my Herx may not be too bad? should I still push for the ARBs?


I really appreciate the time that you dedicate to this forum!---thanks!!!
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-08-03 13:43

SWC,
Your 1,25-D and 25-D give a D-ratio of 1.2 which is close to normal, not indicative of sarcoidosis. ACE is low at 24, consistent with the D metabolites.

There is the possibility that the blood for your 1,25-D test was not handled properly, as 1,25-D decays with time. The blood must be frozen or gotten to the lab pretty quickly. There is also the possibility that your blood was mixed up with somebody else's blood.

Since you are on-track to getting Minocycline I wouldn't worry too much until you see whether or not you get a normal herxheimer reaction. That is an unarguable proof of a bacterial pathogen.

As for the Brown RA therapy. Brown's book recommends an initial bolus of a 'normal' antibiotic to get rid of normal bacteria. I am not sure that this is necessary with Minocycline, which has a wider spectrum of bacteriocidal action than the Tetracycline that Brown used. Some doctors (eg Mercola) use a large dose of oral antibiotic instead of the IV. You should talk with Doc about the high frequency (100%) of bad herx reactions with Sarcoid patients and ask whether the IV is really necessary.

You should start the ARBs as soon as you can find a doctor who wants to help you. ARBs will help you wean off the prednisone. All you can do is print out the "New Treatments Emerge..." paper and the eLetter at CHEST and trust that Doc feels you are helping him, and not intruding onto his/her treatment plan.

Finally, your 25-D is about twice what it could be. As you get it lower then your symptoms should decrease, as less 1,25-D is manufactured from a lower level of the 25-D substrate. So be extra careful to cut down on the Vitamin D remaining in your food chain (and medications).

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Jack (---.proxy.aol.com)
Date:   04-08-03 14:02

Hi,
Thank you very much for your previous reply and suggestion for vitamin D test. I did the test last Wednesday and I received a copy of the lab test today.
Vitamin D, 1,25 Dlhydroxy is 111.2 H{Ref. Range=16.9-55.6 pg/ml}
" , 25-Hydroxy is 29.7 N{ " = 8.9-46.7 ng/ml}
Lab. wrote down the following: The reagents used in this assay are for investigational use only. I do not take prednisone but am taking other medications. I have been on vacation near the beach for a week until 3/18/03. But I tried very hard not to stay under the sun. I have also removed my vitamin intake from food since four weeks. What is the meaning of 111.2 H and what do I do next?
Best Regards,
Jack
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   04-08-03 15:06

Jack,

The "H" beside the measurement for 1,25-D means it is high. The language about the 1,25-D test is standard.

Your D-ratio is 3.74, in contrast to that of normal people, which runs about 1.25.

I know it's hard to understand, but just being outdoors in the daytime, especially if you aren't wearing protective clothing, can mean that light will provoke production of the active vitamin D metabolite in sarcoid patients. The light rays are reflected by bright walls, buildings, and the sand on the beach, so a sarcoid patient can easily get enough radiation to drive up their 1,25-D levels and also add to their fat stores of 25-D.

Belinda
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-08-03 22:10

Jack,
Your D-Ratio is also quite high, indicating significant systemic inflammation.

At a level of 111.2 your 1,25-D is high enough to be causing resorption of calcium from your bones and its deposition throughout your soft tissue, including your lungs and kidneys. It is imperative that you bring it down ASAP.

But at least Doc knows there is something wrong with you now - hopefully you will get help from him/her on ARB and Minocycline therapy.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Diana (---.cache.pol.co.uk)
Date:   04-11-03 12:57

I am not sure if it is worth reporting the "half results" I got today. My ACE of March 4th was considered normal at 28, and my 25D low at 8.0 (ref range for Jan-Apr given as 9-47). BUT, there was a note from the lab wondering why the 25D was to be done twice! Of course it wasn't, and the second form clearly said 1.25 dihydroxivitamin D, because I checked it on my way to the "blood ladies". My GP will discover on Monday if they still have the original blood, but will it still be any good? Will I have to start again? (I know the 25D and 1.25D must be done as a pair, but I am prepared to let them off doing the ACE again since that was also 28 on 23rd October 2002.)

Diana
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   04-11-03 13:32

Diana,

How frustrating. Your 25-D may well be so low because you have a lot of inflammation. But without the 1,25-D, it's a guess. Have you been stingently avoiding Vitamin D and sunlight? Do you have a lot of symptoms?

It looks like you'll have to have the set repeated. I doubt they would have saved the blood or that it would be accurate since 1,25-D is a very delicate test. It's odd the lab was confused if the labeling and order was correct. I hope you don't have to foot the bill for the second 25-D.

Meg
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Diana (---.cache.pol.co.uk)
Date:   04-12-03 09:51

Meg,

Thanks for your message. When the blood was taken, I had only known about avoiding vitamin D for about a month, but had been more or less housebound for some time because I was not allowed to drive until they were happy my heart was in a fit enough state to be safe, and I am paraplegic. Yes, I have lots of symptoms - far too many to list here and covering most parts of my body. I am possibly looking at having had miliary sarcoidosis for 25 years.

Oh, well. After all that time, another few weeks may not make any difference. No, I won't have to pay for the second 25-D. The British NHS may have its faults, but at least the customer does not pay (except through taxes!).


Diana
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Jack (---.nrockv01.md.comcast.net)
Date:   04-13-03 17:52

Belinda and Trevor,
My doctor's office called and ask me to make an appointment to discuss lab test results. Do you know if I can reduce the inflammation since I have eliminated all foods containing Vitamin D? If that can be done how long does it take to see the outcome?
When I meet my doctor next week I will bring the following articles:
1}Dosing issue with Minocin/Minocycline to treat Sarcoidosis
2}New uses for older antibiotics
3}Valsartan dosing regime
Is there any other information I should bring with me?
Thank you in advance.
Jack
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   04-13-03 20:07

Dians,

Since you were avoiding Vitamin D for a relatively short time, I'd put money on the fact that a high 1,25-D depleted your 25-D stores.

Meg
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   04-13-03 20:18

Jack,

You might want to also give him Trevor and Liz's papers "New Treatments Emerge As Sarcoidosis Yields Up Its Secrets" and "Remission In Sarcoidosis", if you haven't done so already. They are listed with the physician papers at the upper right of this page.

Yes, you can reduce the inflammation and relieve some of your symptoms by simply avoiding Vitamin D and sunlight as this will lower your 1,25-D somewhat. You may see the results almost immediately (my leg cramps disappeared almost overnight) and most people get some relief within a few days.

But to put your sarcoidosis into remission you need to kill the mycobacteria with antibiotics. I hope your doctor will be receptive.

Good luck,

Meg
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Diana (---.cache.pol.co.uk)
Date:   04-14-03 08:20

Meg,

My GP has just discovered that my "second lot" of blood has just been sitting in a freezer all this time. It is still deemed viable, and is being dispatched to Manchester straight away. I suspect that the biochemist just hadn't heard of testing anything but 25D, but my GP explained the reasoning behind the D-ratio (having only discovered himself on Friday, when I told him!) and the biochemist has been cooperative. I can't see why the blood should not be alright if it has been stored properly, and am pleased that I should still get a base-line set of data. Giving a new lot now might give a different picture. Now I just need to be patient until the results come!

Diana
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Rick MacKinzie (---.snvacaid.covad.net)
Date:   04-17-03 12:53

Trevor,

I just left my pulmonogist and he is very puzzled and concerned about my April 9th blood work:

Dates of 1/28, 2/26 and 4/9 . . .
ACE went from 122 - 106 - 177
1,25 DH went from 47.9 - 31.9 - 59.4
D 25 went from 19.3 - 12.7 - 13.8

I started Minocin on 3/12 100 mg then 3/24 went to 200 mg.
Benicar on 3/31 2x daily then 4/4 went to 3x daily.

The only other change or problem was my abcessed tooth which started around 4/2. Root canal on 4/11, started Penicillin 4/11 with 1/2 tab of hydrocodone as needed. Pain continued thru 4/16. Feeling better today.

The inflamation from the abcess and root canal are the only thing that I was able to offer as possible reasons for the increases. I was able to get him to wait a couple of months in order to let the tooth problem resolve and then redo the blood work in June.

Any thoughts?

Thanks,

Rick
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   04-17-03 15:38

Rick,

The vitamin D ratio from the lab results you gave are as follows:
1/28: 2.48
2/26: 2.51
4/09: 4.30
So you can see that the D-ratio has been rising with each blood draw, although the readings have varied. The D-ratio gives you an idea of the amount of active inflammation.

You've only been taking the Minocin for about a month and the Benicar, which would help lower the inflammation, even less time.

Let's see what Trevor says.

Belinda
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-18-03 19:16

Rick,
The function of Angiotensin Receptor Blockers is to stop the generation of excess 1,25-D by lowering the D-Ratio. This is something that they do very well, when taken at 6-8 hourly intervals.

When you take Minocycline it causes release of endotoxin. That endotoxin causes more inflammation. It temporarily makes your sarcoid worse. Unless you are taking sufficient ARBs to block the generation of extra 1,25-D then your inflammation will actually get worse before it gets better. I don't know for sure whether this is what you are experiencing, but it would not surprise me, as it is consistent with the way the body works.

Although the abscess will respond to Minocin, it is unlikely that the amount of inflammation from dental inflammation would be affecting your body in any measurable way. With a D-Ratio above 2, most likely there is inflammation throughout your soft tissue.

Benicar usually kicks in pretty quickly to lower the 1,25-D (within two weeks or so). I am not sure when you started taking it. But As I keep repeating, it has to be taken 40mg every 6-8 hours or it is not effective at immune blockade.

Does this give you any ideas which might help you rationalize what is happening?

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Mike Clouser (---.pinval01.in.comcast.net)
Date:   05-01-03 17:11

My Vitamin D test results are back and they are normal. The blood was drawn while I was having an intense "flare up" which has lasted at least 3 weeks now. I don't remember which is which but they were 27 and 29, which would put my D ratio very near 1. I have cutaneous sarcoidosis confirmed by biopsies, but have not had any problems, so far, with other organs. My dermatologist is planing to start me on some low doses of liquid tetracycline after my current "flare up" dies down. He is concerned about not killing too much stuff all at once and causeing bad Herx. reactions.

Mike
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-01-03 19:01

Mike,
If you read through the posts in this thread you will find time and time again my explanation that you have to get the actual numerical values of the tests for both D metabolites from Doc,and the units of measurement.

Please post the actual values and then I will tell you what they reveal about your disease state.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Helen Turner (---.cache.pol.co.uk)
Date:   05-02-03 08:04

Trevor

Can you help me with these test results I am afraid they may Have done the wrong test after all.
Calcium Serum total protien 73
Serum Albumin 44,
Serum Calcium 2.42
Corrected Serum Calcium 2.34
Vit D 22.7

Does this make any sense to you If it is the wrong test I will have to try again after I have had my op I am going into Hospital on Tuesday next week to have fusion replaced in my spine.

Thank you.

Helen.T.
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-02-03 08:21

Helen,
Did you say anything to them about Calcium? Did I say anything about Calcium? NO...

What we have here is a physician that is just oh so smart. The moment you started talking about Vitamin D he/she started thinking about Calcium. Why? Well, because 10 years ago that is what they were taught is the function of Vitamin D. But they are dead wrong. Hundreds of biochemists have spent the last decade finding out what vitamin D actually does to the body, while most clinicians have remained living in the last century.

The test that you need done is for 1,25-dihydroxyvitamin-D. It is listed in the NHS master list - but your physician will have to do some footwork and look it up. Then it has to get sent off to a lab in Manchester. Several weeks later you will have the results.

In America the FDA mandated this test for osteoporosis research back in 1994, and we can have the blood drawn at any doctors office. For some reason Britain is still denying the existence of this steroid hormone. I really don't know why (it is NOT the NHS's fault).

..Trevor..
ps: you also need to find out the UNITS of measurement. Are they nmol/L or ng/Ml (for the 22.7 number).
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Tom Rogers (---.twcny.rr.com)
Date:   05-03-03 19:09

I am so excited, I just had to write in...

After having two pulm docs tell me there is no need to do any of this blood work, cause it won't show them anything, I talked to my family doc (who happens to be a close friend and church family member). He agreed to do these tests on Monday. Whoo Hoo! Prayers have been answered. God is indeed good!

OK, my question then is, how do we interpret the data into the ratio? My doc needs to know because he will be doing the same tests on his son who has Lupus. Whenever he goes out into the sun, he aches really bad as well, in the joints and muscles. I would like to take this info with me to the visit Monday.

If there is a paper that explains this, please point me to the correct one so I can print it for him.

Finally, I know Sarc patients have to restrict Vit D input via food and sun. Isn't this bad though? What about bone loss? What about calcium levels?

How often does one need to repeat these blood tests?

Thanx again, -Tom
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-03-03 21:00

Tom,
There are three papers Liz and I have written about how to interpret the D-ratio. It is a little more complex than set out in these papers, but they will give you a good start. The D tests are also excellent for testing the virulence of Lupus and Crohn's inflammation, and even sensitive enough to grade the severity of Rheumatoid Arthritis. Here are the references.

http://www.chestjournal.org/cgi/eletters/123/2/413
http://clinmed.netprints.org/cgi/content/full/2003010001
http://bmj.com/cgi/eletters/326/7379/12/b

A sarc patient is getting ALL his/her bone loss through high levels of 1,25-D, which increases osteoclast activity. Use the "search" feature to search for 'osteoclast' for more info.

The 25-D value varies over about a 2 month cycle, while the 1,25-D varies over a 4-6 hour cycle. How frequently you do them depends on what you are trying to see. For example, some folks took them 2 weeks after starting Benicar to prove that it really was lowering their 1,25-D production (it was). Three months is a good interval.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Mike Clouser (---.itt.com)
Date:   05-06-03 11:03

OK let's try this again.

My D results are:

1,25 D = 29 pg/ml
25 D = 27 ng/ml
Ratio = 1.07

These results where obtained a few days after taking 4 doses of minocycline, which resulted in a vigorous reaction of open skin lessions and a swollen ankle and foot, which have not yet totally subsided after about 3 or 4 weeks.

I have not noticed sensitivity to sunlight or vitamin D supplements in the past or even the sunlight exposure from golfing last night.

Mike
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-06-03 11:14

Mike,
Those are good results. And your interpretation is correct - you have a normal D metabolism, without significant generation of 1,25-D in any internal inflammatory granuloma.

So it seems as though the inflammation is confined to regions of your body that are not well perfused - like the skin.

Your dermatologist is on the right track. Low dose tetracyclines should help you recover. Your own immune system ought to do the rest. I am not sure that liquid tetracyclines are necessary, but they will work fine. Doxycycline and Minocycline are members of the tetracycline family with increasing effectiveness
Tetracycline < Doxycycline < Minocycline

They all kill CWD bugs.

..Trevor..
ps: sorry if I came over a bit strong on needing the actual figures - by asking for the actual lab results some patients have discovered their doctors were not being totally truthful- and in one case, a 'misreading' of the number '7' caused incorrect data to be verbally given to the patient...
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Mike Clouser (---.itt.com)
Date:   05-06-03 15:35

The reason my Dr. wanted to use liquid tetracycline was to be able to control the dosage and start off with a small dose. My reaction to the minocycline was rather violent. The Dr. also knows about minocycline being the prefered antibiotic and then doxycycline. I over-heard him talking to another Dr. in the hallway about it while I was preparing to leave the exam room today. He also related the bacterial cause theory of sarcoidosis to the other Dr. It looks like I have a Dr. that will work with me on this!!
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Eileen (---.client.attbi.com)
Date:   05-09-03 08:06

Well all the results are in!!!!!!!!!!!
2 months ago my blood results were
ACE 69.8
D-25 14
D-125 40

My NEW results, and mind you, I have not ever been on steroids, etc...

ACE 26.8

D-25 15

D-125 33

The enlarged lymph node in my neck is half the size, the pea sized nodule in my arm (that I have had for 7 years now) is gone.
I am so happy!!!!!!!! Thank you Trevor!!
Eileen
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Brian (---.ne.client2.attbi.com)
Date:   05-15-03 12:40

Good Afternoon Trevor and All,

Trevor, I have a question for you. I've just received blood work results and they look to be an improvement over 2 months ago. I'd like your input.

December 2002:
ACE = 95
25-d = 22
1,25-d I don't remember the exact number, but ratio was about 1.5

March 2003:
ACE = 100
25-d = 16
Doctor wouldn't do the 1, 25

May 2003:
ACE = 73
25-d = 19
1, 25-=d not out of the lab yet. With a little persitence, doc agreed to do the 1,25 again after refusing before.

How much of an improvement is this to see in my ACE level? Is this something that I should be really excited about...is it showing a possible remittance?

Also, I should note that I haven't eaten fish or had a lot of milk over the last few months, and that I do get sun exposure because I have to work outside. My 25-d has remained fairly constant though. In the week to 2 weeks leading up to my blood work, I had an aweful lot of sun exposure, and it doesn't seem to have affected the 25-d level much, if at all. I don't have the 1,25 levels yet, but am interested to see what they show. Also, one more point, my 25-d levels haven't changed much from when I was drinking alot of milk and eating fish to this point where I don't have much at all.

My big question, once again, is how much should I make of the drop in the ACE level. I don't want to get too excited, or get my or my wife's hopes to high.

Any input would be appreciated.

Thanks,

Brian
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-15-03 12:58

Brian,
ACE is a marker of the th1 inflammatory process. It will go up when you start taking ARBs, down when you take prednisone (even steroid inhalers), and down if you take an ACE inhibitor for blood pressure.

If none of those factors apply to you, then a drop is good news. Wait and see if the 1,25-D confirms it before getting too excited, though, ACE is very unreliable on its own. Doc will usually want to hear that you feel better or see that your Xray is better before correlating that with the lower ACE and saying it is significant.

Have you started on Minocycline or ARBs yet?

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Brian (---.ne.client2.attbi.com)
Date:   05-15-03 13:43

Trevor,

I haven't had any luck with getting a doctor to go along with the antibiotic therapy, so I haven't taken anything yet, including ARBs.

I've not used the flovent for at least a week. Two to three weeks ago I had a very hard time breathing and and chest tightness, so I used the flovent. Before that time though, I had tapered down to not using flovent at all.....I was using it 2 times a day when my March bloodwork was done.

When I get my 1,25-d results - if they should show that I have a ratio close to 1 - should I ask for an x-ray to see if the fullness in my hilar region has gone down?

Thanks,

Brian
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-15-03 13:53

Brian,
My experience is that the chest Xray is the least useful and slowest-to-respond of all the diganostic tests.

Minocycline is commonly prescibed for teenage acne. Now that the CDC has flagged Sarcoidosis in "Emerging Infectious Diseases", any doctor that will not prescribe it for a sarcoid patient is not properly looking after the interests of the patient, IMO. The reward to risk ratio is effectively infinite.

Unless you are one of the lucky few who experience autonomic remission, you will not really get better until you kill those microbes.

Let's see what the 1,25-D value is, and please try and get the exact value it was in December (for comparison). But my guess is that any improvement in ACE or chest Xray would have been mediated by the steroid in the flovent.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Brian (---.ne.client2.attbi.com)
Date:   05-19-03 11:34

Trevor,

I received my vitamin d1, 25 level this morning; the level is 56 pg/ml. Can you tell me why my vitamin d-25 doesn't fluctuate too much, but my vitamin 1,25 is up at the upper range now? Wouldn't it make sense that it should be lower, seeing as back in Feb. when my vitamin d-25 was 22, my d1, 25 was only 34. I am a little confused, especially since my ACE did drop 27 points and I used the flovent less than I had when my march bloodwork was done.


December 2002:
ACE = 95
Calcium is 9.8 mg/dl (Quest) from sample taken 2/13
Vit d-25 is 22 ng/ml(Quest) from sample taken 2/13
Vitamin d1, 25 is 34 pg/ml (Quest) from sample taken 2/13


March 2003:
ACE = 100
25-d = 16
Doctor wouldn't do the 1, 25

May 2003:
ACE = 73
25-d = 19
1, 25-= 56

Thanks for your input.

Brian
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-19-03 18:43

Hi Brian,

25-D, the precursor to 1,25-D, is synthesized in the skin and stored in the body fat. This is why a reasonable amount of sunlight exposure during the warm weather months will provide enough 25-D to last all winter. It reduces very slowly (if you are avoiding all forms of Vitamin D) and can take from 2-12 months to work that storage down and hence the 25-D level. Your 25-D data shows a drop initially and then an increase which may correlate with increased Vitamin D exposure or intake. This level is easily measured and since it doesn't change quickly, it's pretty accurate.

On the other hand, 1,25-D fluctuates rapidly (4-6 hrs.) when you are exposed to sunlight or dietary Vitamin D or in response to increased sarc inflammation caused by the antibiotics and the Herxheimer reaction. Since you're not yet taking antibiotics, the likely culprit is increased sarc inflammation caused by sunlight or Vitamin D intake. Does this sound feasible to you? Remember 1,25-D is produced by the macrophages of your sarc inflammation. You just need to figure out what is causing the increased inflammation.

And of course you need to find that supportive doctor so you can get well. Is the doc who ordered the D-metabolites tests unresponsive to the results of the tests which clearly show that the inflammation in your body is increasing? Your 1,25-D level is now higher than that recommended by Merck (45pg/dl) so you should be able to convince him to order the ARB to get it down. Then you can attack the microbes with the minocycline. I don't think you can put too much credit in the ACE levels. There are often normal in folks with major sarc involvement.

Hang in there and keep pushing that doc!

Meg
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Tom Rogers (---.biz.rr.com)
Date:   05-21-03 14:15

Trevor,

Ok, finally got my results back from LabCorp. Tests were taken on May 5, 2003.

ACE = 133 U/L (Normal range is 8 - 52 U/L)
Vit D 1,25 = 28.3 pg/mL (Normal range is 15.9 - 55.6 pg/mL)
Vit D 25 = 15.4 ng/mL (Normal range is 8.9 - 46.7 ng/mL)

My ratio is 1.837 and good, if I am correct is reading here, that we should hit a ratio of below 4.

Why is my ACE so high? My doc would like to know the significance of the ACE reading in relation to Sarc patients according to your work. Is there something else going on besides Sarc maybe?

Please advise. Thanx!

-Tom
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Denise (---.connect.com.au)
Date:   05-21-03 22:56

I think Australian's are beginning to wake up.

There was a report on a current affairs program last night about the latitude gradiant and sunlight in autoimmunes specifically MS in this case but it exists for childhood diabetes and atopic dermatitis too.
New research is being undertaken.

here is a URL for the transcript of the segment

http://www.abc.net.au/7.30/content/2003/s860740.htm

Perhaps Trevor could teach them a thing or two.

There is a definite latitude gradiant with sarc.

Denise
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Tom Rogers (---.twcny.rr.com)
Date:   05-22-03 12:33

Trevor,

I read over the LabCorp sheet for the D 1,25 from the link on this website, and all it says is to refrigerate. What are the special handling/time periods/etc that I need to have done to make sure the D 1,25 gets done RIGHT this time? (If my insurance doesn't pay, and it is costly, I obviously don't want to be taking this test over and over.)

BTW, if it's ok for me to ask, (I get asked this alot by the docs I have seen and my relatives, cause I always talk of your research and this website)...is there a place on this website that describes your credentials and such, or can you email/post them?

It's just so I show them you really do know what you are talking about, and I can keep the nay sayers at bay. (I'm sure you have experienced this before.)

Thanx so much,

-Tom

PS: Today I noticed I have several new, small bumps on my face and shoulders. Is it possible Sarc is spreading to my skin now? Thanx.

PSS: If there is anything I can ever do to help you, anyone here, and/or the cause for Sarc healing/cure, please don't hesitate to let me know. I don't want to just sit here and take, I would like to give in return.

(I have been doing my best to pass the info here on to my docs. I even showed them the CDC article about Sarc and Mycobacteria.)
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-22-03 12:44

Tom,
Take a look at
http://www.joimr.org/phorum/advisory.htm

Very little blood is transported frozen or refrigerated these days. I suspect that is what the problem was. Use a different lab this time. Several are listed in the tutorial on D metabolite testing.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Tom Rogers (---.biz.rr.com)
Date:   05-28-03 09:09

Trevor,

Does this info make a difference at all - I think I may have gotten Sarc last May, and they say in most people it resolves in 2 years. Should I wait until next May to see where things stand or would it be wise to start the treatment anyway?

I like to be pro-active, but if this does resolve on it's own, and I am taking the Benicar and Minocin treatment anyway, is there any harm in doing so?

Thanx again,

-Tom
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-28-03 09:17

Tom,
I would like to talk with some of these people whose sarcoidosis (supposedly) autonomically resolved.

Those who have posted on this message board always have had the sarc come back later to affect some other organ, or have to deal with the neuro symptoms of fatigue and etc. The clinical standard for "remission" is inadequate, IMO, and needs to be better defined, preferably based on systemic data rather than just Xray and ACE data.

I just do not believe that 80% of sarcoidosis patients recover, as you can read at Prof Sharma's website. It is neither my experience, nor does it match with my understanding of the bacterial processes involved in triggering and sustaining Th1 immune disease.

Long term minocycline has been used by Dr Brown and the RoadBack organization in tens of thousands of patients over several decades. It is unlikely you will suffer harm from that drug. Similarly, ARBs have been prescribed to millions of people all over the world. Many of these folks will be taking them for the rest of their lives. Again, it is unlikely that any harm will come from the use of the ARBs.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Tom Rogers (---.biz.rr.com)
Date:   05-28-03 09:24

Thanx Trevor. 3-6 months therapy is what I have read on this website. That is both Benicar and Minocin together, correct?

I will have doc start me up regardless.

-Tom
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-28-03 09:33

Tom,
The length of therapy should be until the herx goes, and for (approx) an equal period thereafter, IMO. You have to ensure all the bugs are killed from all depths of tissue.

It may take years to get rid of a lifetime's bugs. This study in RA patients showed significant extra remissions between the third and fourth years. Hopefully, by using ARBs and more efficient antibiotic dosing, it will not take us as long as that... but in any case, after about 6 months all the pain and agony has gone and it becomes a mopping-up operation.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Tom Rogers (---.twcny.rr.com)
Date:   05-29-03 06:09

Morning Trevor,

I am going to get the blood work redone (frozen and sent to Quest labs) but I have a question. I have taken 4 doses of 333mg of Erythromycin for a small skin infection. Will this interfere with my D tests in any way?

Thanx,

-Tom
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-29-03 09:42

Tom,
Erythromycin is an antibotic that may possibly be sometimes effective against a few species of CWD bacteria. But I doubt that it would have any effect on your 1,25-D levels.

Sorry to be such a stickler over the re-test, but with your ACE high a low 1,25-D would be an indicator of atypical disease activity, and so it is important to pin this down.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Tom Rogers (---.twcny.rr.com)
Date:   05-29-03 10:14

No problem, I just had it done, and they assured me over and over that it will be frozen when it leaves the hospital.

I'll update as I get info.

Thanx,

-Tom
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Tom Rogers (---.biz.rr.com)
Date:   06-02-03 12:37

Trevor,

Will Benicar lower my ACE?

-Tom
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Diana (---.cache.pol.co.uk)
Date:   06-04-03 06:39

Dear Trevor,

I have just discovered my March 4th blood results:

25D 7.2ng/mL
1.25D 30.0pg/mL
ACE 28

A short lung biopsy report said "no tumour", and that was all, although I was told that it would have said if there was sarcoid. A full report is being requested, but with atypical X-rays it seems my inflammation is more likely to be from something else and I have been (unless there are lung changes) discharged from the lung clinic.

I go to see my GP in about an hour. Clearly my D-ratio is high. What else might give that sort of value? Should I be asking him to try to get the biopsy tissue (now lung and uterus) looked at under much greater power to see if the source of inflammation should be nailed? Should I still be trying to get ARB/Minocin treatment?

Your thoughts would be appreciated, even if they can't be immediate.

Diana
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-04-03 06:48

Diana,
You have very good control over your D intake. I guess you are sensing your symptoms very well.

A D ratio of 4.1 is probative for significant internal inflammation. Typically only Sarc or Lupus would go that high. Both are Th1 inflammations, both are treated the same way - by killing off the bacteria that cause the inflammation.

IMO, You are probably best out of the lung clinic if that is the way they carry out their process of diagnosis/treatment

Yes, I would just focus on getting the ARB/Minocycline and getting a few months of treatment under your belt. While the doctors try and figure out what to do, you can probably get it all under control...

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Diana (---.cache.pol.co.uk)
Date:   06-04-03 07:15

Trevor,

Thanks very much for the speedy reply. I was in a far worse state last summer, and must have had a much higher D ratio then. Would that make sarc the more likely of the two?

Diana
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-04-03 07:22

Diana,
I suspect you are feeling better now because you have controlled your D intake so well. 7.2 ng/ml is an exceptionally good level of control.

Sarc more likely of what two?

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Diana (---.cache.pol.co.uk)
Date:   06-04-03 07:26

Trevor,

Sarc more likely of sarc or lupus (as you just said in your email!)

Diana
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-04-03 07:29

Diana,
The difference is primarily one of the pathology, and also that sarc inflammation is usually hidden (except for skin sarc). Subtle differences, not worth worrying about. With a D-ratio that high you need to get an ARB blockade in place and start minocycline. The inflammation is in control. You have to control it.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Diana (---.cache.pol.co.uk)
Date:   06-04-03 09:52

Trevor,

I am now back from the GP, and he said he was old-fashioned enough to be prepared to prescribe anything he didn't think would do me any harm.
I am to write down precisely what I want.

As I understand it, I should begin with
1st choice Omesartan Medoxomil 40mg every 6-8 hours (not sure he can get this)
2nd choice Valsartan 80mg every 8 hours (definitely available)

He did not seem overly concerned about my low blood pressure, but if he insists on doing a lower dose once he knows the ideal quantities, am I right that it is most important to stick to the 6-8 hours (maybe splitting tablets)?

After about a fortnight, start Minocin (he's happy with this) at 50mg every other day, then after a week (lack of herx permitting) up it to 100mg every other day, then later to a maximum of 200mg every other day?

At last something good seems to be happening. Thank you so much for your help.

Diana
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-04-03 10:21

Diana,
Yes, Physicians used to be taught "do no harm". Now they are taught "only do what the drug companies tell you is safe" Congratulations on finding a sensible Doc.

In Europe, Benicar is called Olmetec. You will have to call a pharmacist to see if it is available in the UK. The best blockade is with 40mg of Benicar/Olmetec every 6-8 hours. You can start up with 20mg every 6-8 hours to keep Doc happy, but it will make a big difference in symptoms, but not in BP, going to 40mg.

Diovan usually works nearly as well as benicar, at 80mg every 6-8 hours. The capsules are harder to "break" down dosage, but not impossible.

Sticking to the 6-8 hours is critical.
You may not need to wait a fortnight unless you have a rocky transition to the lower 1,25-D levels as you start the ARB. One week may be plenty. Doc should be happy with a week.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Margo (---.adsl.duke.edu)
Date:   06-09-03 12:30

Trevor,

Here are the latest Vitamin D labs on my daughter, done by a different lab from the previous Vit. D tests, as they were ordered by a different doctor. They were taken after about a month on Avapro at 300 mg per day (in three doses).

4/21/03:
Vit. D 1 25 dihydroxy serum : 92 pg/ml (range for infants and children 15-90)
Vit. D, 25-Hydroxy serum: 11 ng/mL (range for children and adults 10-55)
ratio: 8.4

Previous labs:
3/5/03: (no ARBs)
Vitamin D, 1,25 dihydroxy serum: 110 PG/ML (range for infants and chidren 15-90)
Vitamin D, 25-hydroxy, serum: 12 NG/ML(range for children and adult (10-55)
ratio: 9.2

12/18/02:
Vitamin D 1,25 dihyroxy serum: 70 pg/mL (range 22-67)
Vitamin D, 25 hydroxy serum: 15 ng/mL (range 8-38)
ratio: 4.6

We'll be seeing the doctor who prescribes the Avapro and minocycline next week. We would appreciate your thoughts.

Margo
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-09-03 12:38

Margo,
Minocycline causes endotoxin to be released which causes the D-Ratio to rise. When did your daughter commence minocycline?
..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Margo (---.adsl.duke.edu)
Date:   06-09-03 13:04

Trevor,

She began minocycline, taking half of a 50 mg capsule, on March 24. Because of the Herxheimer, she has been taking the minocycline about every 3 to 4 days, still only about 25 mg per dose.

Just recently, she began to have less Herxheimer, so we have increased the frequency to every other day. I'm thinking that if she can handle that frequency, we should increase the dose. Once in the past, when I gave her about 35 mg, she felt ill for a week.

Margo
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-09-03 13:17

Margo,
So the high D-Ratio on 5 March can't really be blamed on the Minocycline or the ARB - hmm...

So really the only way I can explain the rise between the first and second measurement is to blame the lab - unless you saw signs of disease progression in your daughter during that interval...

Doc might also want to watch the liver profile, especially the alkaline phosphatase, to make sure that MTX is not doing any dirty work on that...

When you increase the antibiotic dose you might want to stretch out the interval, to allow the tissues to fully quench in between boli.

She really needs to be able to tolerate about 75mg in order to say that the inflammation is starting to become controlled. Benicar will help ramp the dose more aggressively.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Margo (---.adsl.duke.edu)
Date:   06-09-03 15:34

Trevor,
Thanks, again.
We thought that symptoms were better between the first and second labs. Then, she began using Avapro on March 8, and really began to feel better.
She does get monthly labs to monitor the methotrexate - complete blood count and liver panel. The alkaline phosphatase has been high, which is due to the bone component. It decreased slightly on the last lab. We also began to supplement with calcium citrate during this period. Since my daughter is intolerant of dairy foods, she consumes very little calcium. We can't get her to eat enough of the non-dairy foods that are calcium rich. We were able to find relatively small capsules of calcium citrate, with no vitamin D, at Vitamin World, since she has a hard time swallowing large pills.

labs:

5/13/03: alkaline phosphatase 659 U/L (ref 30-330)
4/9/03: alkaline phosphatase 741
3/5/03: alkaline phosphatase 621
2/11/03 : " 583
1/14/03: " 534
12/18/03 " 533

The rheumatologists, who are supposed to be monitoring these things, paid no attention to the rise of the alkaline phosphatase. However, the pediatrician was concerned, and ordered a test of the alkaline phosphatase isoenzymes, which show only the bone to be high: 1427 U/L, with a reference for adults of 24-146, on 1/24/03.
The pediatrician and the pulmonologist consulted pediatric endocrinologists, who suggested it was due to very low calcium values (my daughter's calciuria was very, very low). I don't know if they are right, since I doubt they know that much about how sarcoid would affect everything. (We actually discussed this in January in some earlier post.)

We would love to stop the methotrexate. I don't think the Avapro provides enough of a blockade. My daughter does feel better on the Avapro, but I would like her to try Benicar.

Margo
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-09-03 15:44

Margo,
Your docs are almost certainly incorrect blaming the calcium. With a 1,25-D as high as your daughter's, the osteoclasts are firmly in control, breaking down bone much faster than it is built up. Calcium will make little or no difference.

This review explains how bone building works. It is huge, because it is a complex story. I doubt any doc educated more than 5 years ago would stand a chance of understanding the complexities of the biochemistry (unless they studied it up). You will note that 1,25-D is a potent stimulator of osteoclasts. It is generally accepted that at any value over 42 pg/ml you are going to lose bone mass. (search in the review for "dihydroxyvitamin")

All this is without considering the effect of the methotrexate on bone loss...

Good luck with the 40mg 8hr Benicar, that would be a huge step forward.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Bevin Black (---.vianet.ca)
Date:   06-12-03 19:30

Trevor, I'm the one with sarcoid of the heart. You had suggested I get my vitamin "D" levels checked. I would have been reluctant to do this, because, I feel I am already cured. But I have been so totally impressed by your research, and favorable results, that I rushed out to my family Doctor. Our system is free in Canada, but it has been slow in getting this done for me ( maybe 3 months) The results say that my 25-hydroxy vitamin D is 42 NMOL/L, and my *1.25-hydroxy vitamin D is 131 HI. I am at a bit of a loss here, as the units are different than yours. I have been feeling fantastic for a few years now, since I eliminated the CORN protein from my diet. I am a little tired right now, but I have been working 10-12 hours a day for a month, with no days off. I havn't seen the sun much, in that time as I work in a machine shop. As I've said before, the sun only bothers me, if I've accidently consumed corn in the last 12 hours. I hope you find this interresting. Bevin Black
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-12-03 19:42

Bevan
42 nmol/l converts to 16.8 ng/ml
131 pmol/l converts to 50.38 pg/ml, which is high (>45)
99.5% of the population would have a value lower than this.
Your D ratio is 3, which indicates significant systemic inflammation.

This is not necessarily in conflict with you feeling great, because these values may have been higher 2 or 3 months ago

The easiest way to double check these results is to see if you get any herxheimer from minocycline. It is always better to do therapy when you feel good, and not when things have gone downhill

..Trevor..
ps: cutting sugars from a diet can cut the glycosylated proteins and make a huge difference to your immune system. So I am not really surprised at the corn helping, although I would always advise a sarc patient to concentrate on cutting sugars first. The Atkins diet is a good way of doing this (not necessarily with the intent to lose weight )
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Bevin Black (---.vianet.ca)
Date:   06-16-03 20:08

Trevor, Fascinating work. I can't wait to try this out. You have so many positive results. But, it makes me think of more questions. I went through Prednisone in '96. Sarcoid came roaring back! The next timeI took Prednisone, it was for a year and a half. As Sarc came back, I found I was allergic to corn. By quitting corn, I was able to stay in remission till now. It sounds like the lady, that you have documented staying out of the sun, except, my sarc is triggered by corn.You say 'pulmonary lymphosites might become activated by allergens'. My imune system activates 12 hours after eating corn protein. Could 1.25-dihdroxyvitimine D be produced in my gut? I tell you that I am feeling great, but my D-ratio is a little out of wack. Maybe I could do better. My heart is in first degree bloc, the best in over 20 years.( Except when I was on Pred). I've also had some bad muscle aches, I thought from straing myself. What is feeling NORMAL? Maybe, I've never been there! Anyway, a corn allergy is very hard to find because it is in everthing. eg barbeque sauce, glucose, dextrose, icing sugar,
baking powder, Tylenal, Zoloft, Basically anything in a package can make me react. You say to stay away from allergens while recovering. I am telling you about this, because I didn't know about my corn allergy for about 30 years. It could be, that other people, might not know either! Wouldn't it be a good idea to get an ELISA Test done before anything else? Have you ever had one? Is this all worth a closer look? Would you suggest minosine and ARB for me still? I see my GP on Friday. Thank you so much, Bevin Black
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-16-03 20:18

Bevin,
I was convinced that I was allergic to sidestream cigarette smoke. For 20 years. But I wasn't. For a year or two I was convinced that I was allergic to fruit. So I got myself hospitalized with scurvy.

I have been through sarc. I know this disease. I know what it does to you.

And I am starting to realize that I never had any concept of "normal" until about 6 months into minocycline therapy. Since then it just gets even better. Unimaginable is a good way to describe it. As you suggest, a sarc patient has had no experience of "normal". It was quite a shock to me.

I no longer need any ELISA test because I have no allergies or any problems with sidestream smoke any more. The antibiotics killed the bugs that were making my mind and body go haywire.

Try to take the minocycline (under your doctor's care, of course) and see if things get worse. See if herxheimer throws a monky wrench into your life. If it does then you know there are microbes that are affecting your life. And that the minocycline will (eventually) kill them. And reveal a new "normality" to you too.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Margo4 (---.adsl.duke.edu)
Date:   06-17-03 08:34

Trevor,
In the book, The Road Back, it is mentioned that patients who had allergies found that they became less allergic after antibiotic use. Here is an analogy I've read regarding allergies that may help explain this.

Imagine a bucket that contains the allergens one is exposed to. As the bucket fills up, the allergic response increases. So, for example, a dusty room during pollen season may be a problem, but not a dusty room at another time of the year. Or, perhaps, eating a particular food during pollen season, after sleeping in a dusty room.

If the bacteria one is exposed to while suffering from sarcoidosis stimulates the immune system, perhaps that stimulus also exacerbates allergic symptoms. Something that would only be bothersome in extremely large quantities then becomes a problem in small quantities.

My daughter, for example, started to be bothered by egg whites about a year ago. The gastroenterologist thought that the immune system stimulation indicated by her uveitis could be making her more sensitive to allergens that had previously not bothered her. (Perhaps she had had a very slight allergic reaction to them in the past in large quantities, for example, after eating lots of meringue cookies.) She certainly feels better avoiding the foods that she reacts to. But, we hope that after using the antibiotic treatment, she will be able to resume eating those foods, at least in small quantities, as she was able to do a few years ago.

Margo
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-17-03 08:47

Margo,
There is no need for analogies.

The mechanism is described in Prof Bob Lee's paper on how the SARS Coronavirus might work (in JOIMR)

The way that I see SARC working is somewhat similar, but not so severe as with the SARS Cornavirus. I see that a bacteria which is capable of mimicking the 'T-cell Receptor alpha-beta V protein' infects some inflamed tissue, living inside the macrophages and stimulating them into hyperactivity without the need for intervention by activated T-lymphocytes. The immune macrophages activate themselves, without a trigger.

Like Dr Brown, I can also report that my own allergies and sensitivities have disappeared as the antibiotic has steadily done its job. Even skin scratches, which used to come up in a big welt, no longer react in an abnormal way.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Christian (---.ipt.aol.com)
Date:   06-17-03 14:40

Trevor,

I just received some results for the tests that were ordered before initiating Minocin/Diovan therapy.

The blood was drawn may 9th 2003

1,25 D: 122.0 pmol/L
25D : 28 nmol/L

Which makes a 4.35 D ratio

Cholesterol 6.35 mmol/L flagged high (3.57-5.20)
HDL Cholesterol 1.70 mmol/L Flagged high (0.90-1.55)
LDL Cholesterol 3.98 mmol/L Flagged high (2.00-3.40)
Triglycerides 1.46 mmol/L (0.50-2.30)
Lymphocytes % 0.241 flagged low (0.25-0.40)
Lymphocytes # 1.2 (1.0-4.0 10 9/L)
Calcium 2.54 mmol/L (2.15-2.55)
PTH 3.3 pmol/L (1.4-6.8)

My last 1,25D was 162.8 pmol/L january 22nd 2003
They forgot to check the 25D at that moment

On january 21st 2003 (different hospital)

1,25 D: 108 pmol/L
25 D : 58 nmol/L

For a D ratio of 1.86

Why the D ratio is not going down? I'm very happy about cutting 25 D by 50% but what is going on with 1,25 D?

Also I always had this borderline low lymphocytes. Is it because they are "busy" in the tissues and not showing up in the bloodstream? Any other thoughts about these results?

Thanks a bunch

Christian
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-17-03 14:51

Christian asked: "I always had this borderline low lymphocytes. Is it because they are "busy" in the tissues and not showing up in the bloodstream?"

That's close enough. There may also less need for lymphocytes to be manufactured because the macrophages have their own supply of lymphocyte-protein living inside them (the super-antigen bacteria)

Your calcium is highish, but it should drop as therapy progresses.

There are two issues with your D-Ratio.
Firstly, when the 25-D is higher than the 12ng/ml region, the D-Ratio will get progressively lower. There still is some attempt by your body to stop the generated 1,25-D from reaching to the moon, so the D-ratio compresses as 25-D rises.

Secondly, there is a lot of variation between hospitals and labs. It is important to handle this blood the same way (freeze it quickly, etc) and not everybody does it right.

There also may be changing of the D-ratio from week to week. Don't know yet. Not significant from the point of diagnosis, but significant waxing and waning in sympathy with the symptoms you are feeling (or vice-versa).

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Christian (---.ipt.aol.com)
Date:   06-17-03 15:27

Trevor,

Thank you for your response. The lab were I went in may is the same were I went in december 2002 ( 1,25D 144 pmol/L and 25 D 67 nmol/L for D ratio of 2.15) The samples were put on ice each time. I don't understand quite well the fact that the D ratio is double. Shouldn't it go down by cutting of the "fuel"? How low do I have to bring the 25D? Is it possible that the "production units" keep churning out the 1,25 D at around the same level but the D ratio is rising simply because the D reserves are being depleted?

I don't understand what you mean by:

"Firstly, when the 25-D is higher than the 12ng/ml region, the D-Ratio will get progressively lower. There still is some attempt by your body to stop the generated 1,25-D from reaching to the moon, so the D-ratio compresses as 25-D rises."

How the body is trying to stop the 1,25 D being generated?

On another subjet, I know that Prednisone is not good but I don't understand how it interfeers with Minocycline?

Christian
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-17-03 15:37

Christian asked: "I know that Prednisone is not good but I don't understand how it interferes with Minocycline? "

Prednisone shuts down the mechanism that your immune system uses to "assimilate" (gobble up) bits of dead tissue and dead bugs and whatever. So, under the influence of prednisone, once you kill the bugs the RNA fragments just lie around in the tissue, giving the risk of even more harm.

Nobody knows exactly what mechanisms control the 1,25-D concentrations in tissue. Generally it is accepted that the concentrations are 10 times higher than in the bloodstream (which is why they play havoc in muscles). There is some mechanism which discourages the 1,25-D from going to 500, for example, or even 100. A feedback mechanism that cuts down the oxidase activity as the level of 1,25-D rises. Your body attempts to "cap" the amount of 1,25-D generated as 25-D rises. This effectively lowers the D-Ratio

25-D vs 1,25-D is actually a non-linear function, not just a simple ratio.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Christian (---.ipt.aol.com)
Date:   06-17-03 15:54

Trevor,

Is the 25D present in the blood stream gives a good idea of the fat storage? If there is absolutely no D intake and no sun exposure, can the 25 D concentration go up? Is it humanly possible (and desirable) to reduce it to extremely low levels? What is the target?

Christian
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-17-03 16:03

Christian,
Yes, if there is no D intake from food or sunshine then the 25-D level results from fat storage, and goes down over time (it has a two month half-life)

12 ng/ml is an average good value. Generally symptoms will drop as the 1,25-D drops towards 20-25 pg/ml area. The lower limit of safe 1,25-D is around 13-17 pg/ml and, as long as your 1,25-D stays above this region, you can safely reduce the 25-D even lower than 12ng/ml, in my experience. My 25-D was below the threshold of lab measurement once. I felt fine

As your inflammation is reduced, and your D-Ratio drops, you will have to start D supplements to overcome the dizzyness and loss of muscle control that occur at very low levels of 1,25-D. But this happens over 6 months or so, don't sweat it....

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Christian (---.ipt.aol.com)
Date:   06-17-03 16:12

Trevor,

So if I have a good 25D value, what more can I do? I avoid sun exposure and D intake to the max. Only Minocin + Diovan can lower my 1,25 D right?

Christian
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-17-03 16:22

Christian,
Yes. Avoid sun exposure and D intake to the max. And wait for the fat storage to deplete and for the minocycline to do its job.

..trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Jan Lewis (---.lgeenergy.com)
Date:   06-18-03 06:24

Aaah...something you wrote above makes me wonder...I have been suffering from dizziness which I just attributed to my low blood pressure which is averaging 85/63. I actually fell down the other day and my husband was really worried. It's usually just upon rising (which would seem to be the BP thing), but reading the above note, I'm now wondering if my D levels have gotten far too low. 25D was 10.4 in March. I have the script to get my blood retested, but had been putting it off until this pain in my side had gotten better. May go tomorrow and have them redone.

Jan Lewis
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Tom Rogers (---.twcny.rr.com)
Date:   06-19-03 08:56

Trevor,

My new D results are back, just got them today. Looks like I am an atypical Sarc patient. What do you make of these results?

ORIGINAL - Blood drawn May 5, 2003 - Sent to LABCORP (not frozen)

ACE = 133 U/L (Ref = 8 to 52 U/L)
VIT D 1, 25 = 28.3 pg/mL (Ref = 15.9 to 55.6 pg/mL)
Vit D 25 = 15.4 ng/mL (Ref = 8.9 to 46.7 ng/mL)

D Ratio = 1.84

SECOND TIME AROUND - Blood drawn May 29, 2003 - Sent to QUEST (frozen)

ACE = Not Tested
VIT D 1, 25 = 35 pg/mL (Ref = 15 to 60 pg/mL)
Vit D 25 = 20 ng/mL (Ref = 10 to 68 ng/mL)

D Ratio = 1.75

Let me know when you can.

Since these are so close to "normal" (1.25) and the ratio was actually lower with the blood sent frozen, I told doc to hold off on any meds and we will recheck in 6 months. Since I feel I got Sarc in May last year, I may just not be bad with it, and I might be one of those that it goes away in, after two years.

On the other hand, why is the ACE so high in regards to the D test? Could be my ACE test was messed up?

Thanx,

-Tom
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Rick in Napa (---.SNVACAID.covad.net)
Date:   06-19-03 09:55

Good Morning Trevor and everyone else . . .

I am a happy camper today as my latest blood work came in:

ACE 101 . . . down from . . . 177 in April
D25 12.0 . . . down from . . . 13.8 in April
125 24.1 . . . down from . . . 59.4 in April
DRatio 2.0 . . . . down from . . . 4.30 in April
Cholesterol went back up to 214 and HDL down to 34 since I stopped the Pravachol 20mg . . .

Started Minocin & Benicar in March . . .
Still taking Minocin 200mg and Benicar 40mg.

Avoiding the sun has made a big difference in how I feel.

Only question the doctor has is why is my ACE still so high?!
And, to get it down to the normal range? And, wants me back on Pravachol.

Still feeling dizzy on and off, but I have most of my energy back.

Thanks again for being there!

Rick
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-19-03 12:45

Tom,
I know I should know these answeres, please forgive me, but, before I analyse the data, can you remind me:
1. Are you taking Benicar yet?, and
2. What are the sarc symptoms worrying you most?

..Trevor..

Rick in Napa:
The latest studies on Statins (like Pravachol) show them much less effective at lowering your risk of cardiovascular complications than the drug companies would have Docs believe. The ARB also lowers your risk of CV complications, and I would suggest asking Doc why that lowering isn't going to be good enough. CV biochemistry is so badly understood, even today.

Poor Doc gets flooded with material by the sales reps. There are literally studies coming out every few days, funded by a continuous stream of money from the drug companies, but few of them show remarkable endpoints for statins. On the other hand, look at the statins topic here on Sarcinfo to see the risks...

The ACE can be high because your remaining inflammation is making lots of ACE, trying to get the Angiotensin II it needs. You have blocked the cycle at the Angiotensin II point, so excessive ACE production is reasonable. Look at "The Angiotensin Hypothesis" paragraph in the "New Treatments Emerge..." paper for a description of the cycle, and this should become clearer.

Good work, BTW.
..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Christian (---.ipt.aol.com)
Date:   06-19-03 15:33

Trevor,

I received today more bloodwork results but D metabolites are not in yet. There is something different this time and it is the WBC. Since my first blood test in november 2000, it always has been on the lower end.

Total WBC always around 4-5 (4-11 10 9/L)

Lymphocytes always around 1-1.2 (1.5-3.5 10 9/L)
% around 23-24 normal (24-45 %)

Neutrophiles always around 2.5-3.5 (1.8-7 10 9/L)
% around 55-65 normal (45-75%)

But after a few weeks of Diovan-Minocin

WBC: total 7.6 (an alltime high)

Lymphocytes 0.9 (flagged low)
% 12 (flagged low)

Neutrophiles total 6.0 (an alltime high)
% 79 (flagged high)

I know that the therapy is making these changes because nothing else was changed and I had my blood checked many times over the last three years. Could it be possible that my body is producing more neutrophiles to "clean up" the battlefield after the Minocycline attack? Do you have an explanation for what is going on ?


Christian
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-19-03 15:49

Christian,
Yes, I can explain it.
The macrophages and monocytes of your immune system are being stimulated from within, by the pathogen living in them, and not in the normal way by lymphocytes. There is little need for lymphocytes, and new ones do not differentiate (are not manufactured). The WBC includes the killed macrophages and monocytes that have reached the bloodstream. It is, of course, higher.

The type of pathogen which can do this are described at
this link

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Christian (---.ipt.aol.com)
Date:   06-19-03 16:02

Trevor,

If I understand what you said, in the process of killing the bacteria, Monocytes and Macrophages die (because the bugs are hidden inside) and then reach the bloodstream. But what is the role of Neutrophiles? Why is there more of them?

Christian

P.S I'm sorry about not understanding but the reference in your answer is way beyond the scope of my comprehension
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-19-03 16:17

Christian,
Indeed, what about the Neutrophils?
You can read the old-world understanding of the immune system at this link

But it is of little use in understanding real-world inflammation. Which is why the CWD infections have gone undiagnosed for a century. these days it is just not good enough to count the cells, you have to be able to describe their functions as well.

In order to understand what really happens I had to be able to work through papers not quite as complex as Bob Lee's, but almost so. Anyway, the references above will give you an overview.

..trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Tom Rogers (---.twcny.rr.com)
Date:   06-19-03 17:42

Trevor,

I have never taken Prednisone, have never taken Benicar, have never taken Minocin. I was told by my pulm doc to live like nothing is wrong. He really believes my Sarc will be benign in it's course, but that I will have Sarc forever. As far as I know, I only have Bilateral Hilar Lymphadenopathy. I was diagnosed with Sarc after a Mediastinoscopy biopsy on my lymph nodes. I would not have known I had Sarc until a routine physical chest XRay showed something, then a CT scan showed the lymph nodes.

The symptoms that bother me are:

1) Three days after taking a multivitamin supplement, I have dizzy/near faint episodes that last 5-15 seconds (then I get sweaty, heart pounds, shaky feeling inside)

2) I have trouble breathing sometimes - feels like tightness in my throat, behind my nose, in my upper chest

3) I have PACs and RARE PVCs

4) My chest and back ache on and off

5) Fatigue and weakness on and off, wake up 3-4 times per night

6) Brain Fog and sometimes it feels like my brain "jars" around in my head, or like I feel "zap" in my head

Trouble is, these could all be related to stress/anxiety (except #1, which, thanx to your site, I KNOW is Sarc). I don't know. I had all the cardiac tests which are fine also.

Let me know.

-Tom
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-19-03 17:56

Tom,
Stress and anxiety are blamed for so many things. The problem with studies that blame everything on stress is that they forget to take into account that the disease might be making you more stressed out, and not just the other way around. Sarc does that.

Tightness in throat is classic hypervitaminosis D. It has sent SarcInfo'ers to the ER room when exacerbated by herxheimer... It is caused by the effect of elevated 1,25-D on the 'smooth' muscles. Probably same for the chest muscles.

You may have noticed Belinda and I complaining of "Brain fog" as one of the few persistent herxheimer symptoms... It is also due to high 1,25-D

Sure seems as though your inflammation is pretty well under control, and your kidneys can control your 1,25-D properly until you get a 'D-surge' due to food, sunlight, etc. I am guessing, but that seems a consistent explanation.

I would suggest talking to Doc about trying a quick course of minocicn, and see if they give you herxheimer. If so, there are some bugs that would be better off dead. But you may be able to struggle by without Benicar. Unless Doc offers it to you of course - then you can jump for glee...

Oh, and at 20ng/ml your 25-D is twice as high as it needs to be. Your 'nasty incidents' should decrease in frequency and intensity if you were to control your D intake and get the 25-D down to 10-12 ng/ml or so. Your 1,25-D would fall, too, I like to target 20-25 pg/ml as a comfy range, but somehere around 13 pg/ml is the clinical lower limit.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-19-03 18:08

Tom,

Your pulmonologist has taken an usual approach. He doesn't believe your sarcoidosis will spontaneously remit but he's optimistic that its symptoms will not bother you. That is undoubtedly a much safer attitude than trying to 'blast' the symptoms with steroids. The problem is, you could be feeling a whole lot better.

I'd bet good money that the symptoms you mention are related to high levels of 1,25-D. We sarc people are a hearty bunch who have learned to live with a variety of not-life-threatening maladies. But just think what your life would be like if you got a good nights rest, you had lots of energy, your mind was clear, the pains were gone and you weren't worried about breathing problems, throat tightening and palpitations.

Have you considered giving Benicar and Minocin a try?

Meg
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Tom Rogers (---.biz.rr.com)
Date:   06-20-03 09:26

Trevor,

What levels D Ratio do you normally suggest the Benicar/Minocin therapy be started at? I know 1.25 is a normal healthy person. Do you range these ratios? 2-3 mild, 3-4 medium, 4-5 high, etc?

-Tom

Meg,

I would love to get rid of all these symptoms for sure, especially when I get surges. Took me a week after sun exposure to get my breathing back to normal. I have thought alot about Benicar and Minocin.

I will give it some more thought, and how I can approach my GP again. I last left it that I suggested we check the levels every 6 months (Dec 2003 next time) - just to monitor and take care of things before they get out of hand, if they ever do.

-Tom
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Bevin Black (---.vianet.ca)
Date:   06-20-03 09:48

Trevor, Thanks for all th help. Also thank you to Margo for the analogies, they are easier for the layman to understand! Now for the real problem. My Doc won't prescribe the minocycline with the information I have given him. (my daughter has been on it for years) He says he would give it me if I had Acne. Changing Doctors in Canada is not an option. There are't any available! So I will go through all your information again, and print what I feel he will accept. papers by the Sweeds on their findings with the electron microscope, Johns Hopkins proof of bacteria causing sarcoidosis, and proof that my "D" levels mean that my sarcoid is active. As far as I'm concerned, the people getting back to you, with such encouraging results, is proof enough. Proof for him, is in only in a medically sanctioned double- blind trial. He is a very respected Doctor and teacher,and very strict in following established medical practices. I will study your site for the next 2 weeks ( daughters wedding) and try to get on the minocycline, to see if I get herxheimer. Bevin Black
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-20-03 10:28

Bevin,
Now I understand why Canada has had such trouble containing its SARS outbreak.

There are no available "double-blind" data on treating SARS yet. The primary quality required is the ability to exchange data with others and to intelligently apply the results in your own practice.

How is the treatment of Sarcoidosis any different to that?

"medically sanctioned double- blind trial" indeed!
Take a look at this medically sanctioned double blind trial. It proved that treatment with prednisone actually harmed sarcoidosis patients. Is this the treatment that your Doc is intending to use?

Or does he have some other "trial" data which convinces him that he is on the correct track by refusing you minocycline? I doubt it.

The FDA has approved Minocycline for the treatment of "Respiratory tract infections caused by Mycoplasma pneumoniae"

http://www.rxlist.com/cgi/generic/minocycline_ids.htm

(click on the word "mycoplasma" to have CWD bacteria spelt out...)

Does Doc know (for sure) that your sarcoidosis is NOT caused by mycoplasma? Has he done the tests? Of course not...

Bevin, I know you have the best of intentions, but I feel that you are wasting your time putting together a more comprehensive package. Spend the time to seek out a physician with whom you can form a working relationship, one that will try to understand what you need in order to recover.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Judy V. (216.94.13.---)
Date:   06-20-03 10:52

I am Canadian and have the same problem. My GP is afraid to do anything, the pulmonary specialist insists on pred and nothing else, my new pulmonary specialists says she wouldn't have treated me any different. I am not taking anything right now. Why a pulmonary specialist? I think I am barking up the wrong tree but what type of dr should we be looking for? I have a freind with lupus and she has several doctors treating her for seperate things. Why? Are they all blind? There must be someone that will look at us a a whole.

I was watching the news last night and they are trying to prepare for new viruses that will be worse that SARS. Why, when that won't they treat the ones that exist first? It is so frustrating. Every once in a while I have to write in and vent.

Thanks for your support and information.

Judy V.
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-20-03 11:14

Judy,
Please understand that my anger is not so much aimed at Canada, as at Specialists who harm their patients while mouthing high-falutin' platitudes. Heaven knows everybody is trying to understand SARS as quickly as we can. I was up late last night contributing what I could to the understanding of SARS.

I have always tried to find colleagues to look after my own health that are internists, whose 'speciality' is the whole body - internal medicine. I had a pulmo back at the very beginning, but the endocrinologists with whom I was studying very quickly overshadowed the pulmo's contribution (Tony, nevertheless, you did a great job...)

One of the problems with the treatment of Sarcoidosis is that patients have had to accept what they are fed - Doctors tend to treat them like mushrooms (you know that analogy - "keep them in the dark and feed them s**t). Luckily, with the Internet we have a chance to organize.

You have no concept of malpractice in Canada - there are no restraints on Docs who decide to focus on their retirement nestegg rather than their patients' well-being. Maybe somebody needs to call CBC and start raising public awareness. Medicine has no incentive to produce cures unless it is put under pressure...

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-20-03 18:48

John,

The D-metabolites tests and the D-ratio is only a guideline. There are many factors that may skew the results. Trevor has said that folks with mainly skin and neurological manifestations of sarcoidosis may not have high 1,25-D levels or D-ratio because the tissues are not well-perfused by blood to pick up accurate amounts of 1,25-D.

So if you are relying entirely on your D-ratio to convince your doc that you have enough inflammation to treat, you may have to get a whole lot worse before he relents. Perhaps if you make a list of your clinical symptoms, as well as a brief chronological list of medical events, he will get the picture. I did this and my hematologist was impressed. It is possible to diagnose sarcoidosis based on clinical presentation only if there are no tissues to biopsy. If you have a biopsied diagnosis or symptoms of active sarcoidosis, IMO, treatment is appropriate no matter what the D-ratio is.

Meg
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Jan Lewis (---.lgeenergy.com)
Date:   06-26-03 05:44

I had my bloodwork redrawn last Friday and got results yesterday. Wanted to share even though I know Trevor is out of town. While the ACE is still high, I spoke with his wife last night and she said the Benicar could be keeping it high.

In March, my levels were:
1,25 25.6
25D 10.4
ACE 98

Now:

1,25 21.7
25D 21.7
ACE 99


She said it was interesting that my 1,25 actually went down while the 25D went up (I've been enjoying my flower gardening in the sun for a few weeks now and have even added an occasional egg and one bowl of cereal w/milk for the first time in 6 months.)

From our conversation, it would seem that my body is actually regulating the 1,25 very well indeed.

I have gone off the Benicar completely right now due to the extreme dizzy spells I was experiencing and am doing fine. My kidney infections seem to be under good control, no pain in my right side for now. Still having neck/shoulder issues, but suspect this will be ongoing as long as I sit at a computer all day.

My D ratio is now 1. I think that is pretty good.

Jan Lewis
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-26-03 10:05

Hi Jan,

Your 1,25-D is most likely down because of the Benicar. We have seen Benicar drop the 1,25-D by half in just two weeks. I suspect that if you discontinue it, your 1,25-D will rise and you will become symptomatic again.

The increase in 25-D reflects your increased sun exposure. You are providing lots of 'fuel' for the macrophages and that is reflected in your increased ACE level. You still have a considerable amount of inflammation going on.

The minocycline may be causing the increased inflammation as it does it's job by killing off the mycoplasma bacteria. The endotoxins released by the dying bacteria cause this reaction. You've accumulated lots of bacteria over the years so it may take some time to resolve.

The Benicar and Minocin seem to be working as they should as indicated by your bloodwork. Some of the dizziness you were experiencing may have been related to Herxheimer reaction. Dizziness is not harmful unless you are liable to have an accident because of it. It would be best to stay on the Benicar to keep the 1,25-D down while you are taking the Minocycline or increasing your vitamin D intake via sunlight and food.

I'm glad you're feeling well and I'd hate for that pain to return.

Take good care,

Meg
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Jan Lewis (---.lgeenergy.com)
Date:   06-26-03 13:45

Thanks Meg for your kind comments. I've been off the Benicar about 5 - 7 days. I haven't had a dizzy spell since my BP normalized at 106/68 again. I was really suffering with those (falling and running into things). My BP was 77/53 and once even lower. I have to be very careful about falling as I have 3-4 bad discs in my back and the simplest fall can send me into months of back pain. Trevor's wife (Liz?) said the high ACE level could be caused from the Benicar and if I could stay off of it and feel OK, then it should be lower next time around. Not trying to contradict anyone here, but sometimes all of this info does get confusing. I, of course, have the Benicar available to me and can get refills. So, if things appear to be getting worse, I certainly shall get right back on it. I'll keep you posted. And, I do continue the Minocin (200mg or even 300mg. every other day).

Jan Lewis
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-26-03 20:22

Jan,

I asked Trevor if Benicar would elevate an ACE level. This is his reply.

Yes, because the inflammation tries to create enough Angiotensin II (which
is being blocked) by making more ACE to make more A-II

..Trevor..

This was news to me. I hope you'll do okay without the Benicar.

Best regards,

Meg
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Jan Lewis (---.lgeenergy.com)
Date:   06-27-03 06:18

Thanks for confirming that. Actually another member of "sarcinfo" had told me the same thing that the Benicar can cause the ACE to be higher. Liz told me they are seeing ACE levels all over the place and it's not a very good indicator of what is really going on. So far without the Benicar I'm ok and feel 100% better without those dizzy spells. Had a slight "twinge" in side yesterday so came armed w/Benicar just in case. But I did overdo yesterday in cleaning out an office here at work. May take a 1/2 day off to recover! Thanks much again.

Jan Lewis
 
 Re: My Vitamin D and ACE Test Results are back!
Author: John T. (---.proxy.aol.com)
Date:   07-01-03 13:52

I just got new D levels and I'm a bit confused. In March, they were 25 D-16,125 D-47. After 3 months (2 of them on Benicar, 40/3 times a day) they are 25D-8, 125 D-55. I thought that the 125 level would follow the 25 level down, but my ratio went fron 2.9 to 6.875. I have watched dietary intake very closely and although I must endure some sun at work, I have reduced that to the bare minimum. When I must be in the sun for a short while, I dress like a mummy and wear my noir glasses.
If this is due to my sun exposure I will have to live with it and suffer the effects, because I can't reduce exposure any more without quitting my job and I can't afford to do that,
I have started on minocycline at 50 every other day and the herx have been minor. I plan to increase to 100 every other day after the 4th.
Your thoughts on why the drastic ratio change would be most helpful.
Thanks,
John T.
 
 Re: My Vitamin D and ACE Test Results are back!
Author: John T. (---.proxy.aol.com)
Date:   07-01-03 14:04

By the way, the blood for latest D levels was drawn before I started antibiotics, and ACE level went from 55 to 53.
Thought I should mention that.
John T.
 
 Re: My Vitamin D and ACE Test Results are back!
Author: John Tavares (---.proxy.aol.com)
Date:   07-02-03 16:47

Thanks Trevor.

I finally figured it out. It seems that I have a lot of trouble getting my brain in gear these days.

I would still love to hear your take on my chang in D levels.

Thanks again

John T.
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Freddie Ash (---.ipt.aol.com)
Date:   07-07-03 12:54

Hi Trevor

This is Fred in WV. I received my vitamin D results back today. I did not have the ACE test done. It has been reading between 6-11. I am on Coreg(25 mg twice daily), Accupril (20mg twice daily), and Warfarin (5mg once daily). I have sarcoidosis in the heart. The vitamin D read: Vitamin D, 25-hydroxy, 11.7. the 1,25-dihydroxyvitamin D, 32. Please tell me what this all means. Is my sarcoidosis in remission?

Your friend in sarcoidosis
Freddie
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-07-03 13:25

Hey Freddie,
Yes, the Accupril ACE inhibitor will make any ACE measurement worthless. Shouldn't affect the D values too much, however.

You have been controlling your D intake really quite well. 11.7 for the 25-D is a good number. You can get it lower by really paying attention to your D intake, but a 25-D of 11.7 is a good starting point.

The 1,25-D is just a little above 'normal'. Generally, sarc patients feel best if they can keep this below normal, say 20-25pg/ml. This is 1 sigma below normal, at the 16% point in the population. The two sigma point, below which you don't want to go, is 13 pg/ml. The reason to get it slightly lower than normal is that it surges if you accidentally eat the wrong thing or get caught out-of-doors during daylight hours. You don't want that surge (which only takes 4-6 hours) to mess up your bone metabolism or over-excite the old ticker...

Your D-Ratio is 2.7, indicating active sarcoid inflammation.
It is also probably depressed a little by the Accupril.
Take a look at the graphs I have plotted here, and put your values in amongst everybody else. Just about "in the middle".
It's not a really high ratio, but your Sarc is definitely not in remission.

If you have cardiac sarc you will need to be careful starting any antibiotic therapy - keep the initial dose real low. And I would be careful to stay away from problematic food for the same reason.

Anyway, the good news is that your D-Ratio is not too bad, and you have your D intake at least partly under control. You can now use these values to track your progress as you slowly take back your life from this thing called sarcoidosis

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: DJ (---.nas5.billings1.mt.us.da.qwest.net)
Date:   07-07-03 15:14

Hi Trevor and all!

Just got my new test results back.

25 D = 11 pg/mL
1,25 D = 15 ng/mL

I went off ARBs for a month to test my unmasked levels and symptoms, and found my symptoms had virtually disappeared. Back on ARBs now, because it makes life in the real world so much more bearable. Very minor herx on 'take-it' days now, and on very sunny days if I have to go out too long. Going to start Bactrim tomorrow.

Thank you Trevor and the Sarcinfo team - You have given me my life back!

DJ

PS Trevor - you think I need to start supplimenting the D yet?
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Marypat (---.proxy.aol.com)
Date:   07-07-03 15:21

Trevor,

Hi! My Dr. ordered the two D tests and an ACE.

Just got the results back from Quest and only the D,25 Hydroxy and ACE
came back. (I actually showed the lab person the two test names on a print out from you and she took 3 tubes of blood.) The report says final report.

ACE 41 (normal ref. 9-67
D,25 Hydroxy 17 ref. 10-68

Can you tell me anything from this??? Why do you think I only got two results???

Thanks!
Marypat
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   07-08-03 05:57

Marypat,

You'll need to do some investigating. To see what was actually drawn, check the doctors order that the lab personnel should have followed. If it says both 25-D and 1,25-D (and drawing 3 tubes of blood would indicate that it did), find out if both tests were done by asking lab personnel. If both tests were run, then they need to track down the missing result for you.

I'm sure you're disappointed after waiting. It won't hurt to let those involved know of your consumer dissatisfaction. Your 25-D is low which could mean good control of vitamin D intake or very active inflammation, depending on the level of 1,25-D. The normal ACE doesn't tell us much because lots of people with active sarcoidosis have a normal ACE.

You've hit a little bump in your road to recovery. Keep persisting-we'll be waiting to hear.

Meg
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Marypat (---.proxy.aol.com)
Date:   07-08-03 07:52

Meg,

Thanks for your reply. I've been eliminating all Vit. D from my diet since May when I found your site, staying out of the sun, and using differing darkness noir glasses since then. My symptoms have lessened dramatically. Unforunately for me as far as test results showing my Dr. something, I did all this for over a month of time before the blood was drawn.

Her office just called this morning with the 1,25 result. She had her nurse tell me all the results were normal.

So:
D,25-hydroxy 17
1,25D 44
ACE 41

So what does all this mean?

Thanks so much for your reply!
Marypat
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Marypat (---.proxy.aol.com)
Date:   07-08-03 07:59

Meg,

I forgot the reference levels were from Quest

ACE 41 Ref. 9-67
D,25 17 Ref. 10-68
1,25D 44 Ref. 15-60

So....
Thanks again!
Marypat
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-08-03 08:08

MaryPat,
Meg will comment on your actual values, but I want to explain why the Lab reference levels for both 25-D and 1,25-D are useless.

Simply put, it is because there is such a high incidence of undiagnosed immune disease in our community. The labs get blood sent to them from Fibromyalgia patients, for example, and it measures high. When Doc then says the patient has nothing wrong with them, the Lab dutifully enters that level as "normal" even when it is not. It is just the the Doctors have no idea how to interpret or use the data, or how to diagnose immune disease.

The Merck maximum value is 45 pg/ml, and this is roughly 2 sigma above the mean of the Danish population data which I use for reference standard values, which is exactly where a lab would normally put its upper limit. But immune disease is so poorly understood by the medical community that the lab ranges are badly distorted for the D metabolites. Don't pay any attention to them.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   07-08-03 14:56

Hi MaryPat,

Your D-ratio is almost 2.6 which indicates a significant level of systemic inflammation.

Your 25-D, the precursor vitamin, is low at 17. This could somewhat reflect your efforts at avoiding vitamin D but I think it is more related to the macrophage activity. Sarcoidosis inflammation uses a lot of the precursor vitamin-D.

This inflammation is signified by your fairly high 1,25-D. Those macrophages are churning out the 1,25-D, using your 25-D for fuel. At 42mg/ng you can begin to have bone loss. And you are close to the maximum level that Merck Manual lists-45pg/mL

IMO, these test results justify an order for Benicar 40mg every 6-8 hrs to get the 1,25-D down before you begin taking minocycline to kill the bacteria. Do you think your doctor will be receptive?

Meg
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Marypat (---.proxy.aol.com)
Date:   07-08-03 17:36

Meg,

This forum has been a God-send! thank you for your (and Trevor's) tireless efforts to help those of us who have been in agony (or just limping along in life) for so long!

Anyway, I'll show my Dr. this and the other messages but I doubt she will be receptive. She thinks I'm a 'fruitcake.' Unless she has undeniable evidence from an MRI (which the neurologist ordered today) she won't budge IMO. BTW how possible is it that an MRI would show something at this stage?

The following was given to her a couple of weeks ago (mind you, I had never been to her with these 'symptoms' and she told me that I had to realize this may just be a psychiatric disorder.

Prior to being seen for possible 'heart' symptoms in the ER on May 14,
2003, over the last year I have had:
Eyes: vision changes-blurry vision, vision distortion
extremely dry eyes (cornea) with accompanying pain in upper left
eye
extremely red, bumpy, painful inside lower lids
extreme sensitivity to light (sunlight & overhead lights especially)
floaters
Tiredness/exhaustion: (as opposed to being sleepy) especially in legs
[feel rubbery when walking, slow/hard to lift when going up stairs]

Painful joints – especially in lower back, feet, ankles, toes, hands, fingers
& wrists - especially after any type of physical activity (feet)
Shortness of breath - harder to breathe or to feel like I’m getting enough
oxygen/tightness in chest
Sinus pain - almost all the time
Headache – almost all the time
Cough - dry most of the time, sometimes with phlegm [not because of cold
or cold related post nasal drip]
Vertigo/dizziness
Night Sweats
Memory loss (mostly in last year-short term memory loss)
Tenderness in legs/ankles [also very sensitive/painful when touched]
Small red tender bumps on back of head/ears, arms, and legs that come
and go in a couple of weeks
Heart – ‘fluttering’ in chest(happens occassionally-sometimes waking me
up from a sound sleep); feeling of pain in upper left quadrant
(occassionally)
Reflux
Changes in taste acuity
Distortion in hearing

Additionally, in the 2-3 weeks prior to 5/14/03 and since the following
occurred or are occurring
Several weeks of ‘bouts’ of feeling flushed all over and then breaking out
in perspiration-back, forehead,
arms, chest
Extreme Tiredness
Dropping/knocking over things with left hand
Severe arthritic like pain in lower back [so severe one night that just
turning over woke me up in so much pain I had to take 3 Motrin (I had
taken some before going to bed) and just stand leaning over a
counter for a couple of hours till the pain subsided somewhat]
A night of very weird sensations/pain through my legs especially the calves
Extreme sensitivity to even slight pressure on legs- the pressure of lying in
bed [an Aerobed-we had guests using our bed] was so painful I had to
get up to get relief;
A ‘burned’ sensation on my right leg – had to get out of bed so nothing
would touch the area it was so Intense
More extreme exhaustion; May12&13th, I spent almost entirely in bed; May 14th I woke up feeling terrible
but thought if I got moving I’d feel better. Ended up in the ER feeling
like a ‘limp dishrag’ with chest pressure and pain moving out toward my
left shoulder, etc.
Pain in hands, fingers, finger tips and toes under nails
Numbness and tingling in arms, hands, left leg and foot
Shortness of breath (this has improved greatly since 6/6)
Trouble walking- both legs seem slow/difficult to move (this has improved greatly since 6/8)
Stuttering when tired
Intense pain in left ear (almost gone)
‘Tenseness’ in chest – every once in a while
Strange ‘feeling’ in left & right sides of head that seemed to be in-between the scalp and skull
Edema in ankles especially the left
Polyuria of one day’s duration (June 9th which made the last two
items almost disappear- I lost 8 pounds that day and 2 more
before the next morning)
Left side of face numb and tingling
ETC!

(I emailed Trevor a while ago privately with this info so you may have seen it before.)

My Sarcoidosis was Dx'ed in 1977 by biopsy of tissue taken from one of six 'remarkable' growths in my chest.

Anyway, Bless you and everyone that works to share all this info and help.

I'll keep you posted!
Marypat
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-08-03 17:39

Marypat,

Sure sounds like a Psychosomatic "psychiatric disorder" to me


..Trevor...
ps: (just kidding, keep smiling...)
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Tammy (---.cox-internet.com)
Date:   07-08-03 18:59

Hello,
Got my lab-work done today! Hope to hear soon! Y'all have a great night!~Tammy~
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   07-08-03 20:25

Marypat,

I'm stunned by your doctor's insensitivity and ignorance, especially with a biopsied diagnosis of sarcoidosis. Your symptoms correlate well with the picture of systemic sarcoidosis and now you have the D-levels to prove it.

IMO, an MRI is unlikely to add anything to the picture. Although you could use it as a bargaining tool to get the Benicar at the dosage you need-40mg every 6-8 hrs. That is, you'll agree to have one when she hands you a prescription. She did order those D tests so perhaps she'll surprise you.

Meg

PS. I forgot to comment on your ACE level earlier. Although it is in the range that might indicate a variation due to genotype, your D-levels are not inconclusive, so further testing isn't warranted. Serum ACE isn't specific for sarcoidosis; many patients with active disease have levels within the normal range.
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Lana (---.dialsprint.net)
Date:   07-09-03 16:15

Author: Lana (---.dialsprint.net)
Date: 02-27-03 14:16

Author: Lana (---.dialsprint.net)
Date: 02-11-03 17:09

Trevor - Well, as the queen of procrastinators, I've finally pulled this off. I was tested and actually have my results back. They aren't as significant as they would have been if I had of had it done before I started the Doxy in early November of last year, and I apologize for that but there is room for improvement, I think. I know that I still have swelling going on because I can feel it in my throat. The tests were processed by LabCorp.
Vitamin D, 25-Hydroxy - 16.2 ng/mL
Vitamin D,1,25-Hydroxy - 41.7 pg/mL
ACE - 32 (I am still on 5 mg. of prednisone a day)

My Dr. said everything appeared to be "normal".
If I am figuring this correctly, my ratio is 2.57 which would coincide with my feelings of where I think I am. I know that I am a lot better than when I started reading this forum (and began antibiotic therapy), but I also know that I have a ways to go.
Since I had that strange little occurence when I took my 2nd 40mg dose of Benicar (after 12 hours) , I've held off increasing it but now I guess it is a necessary thing to do. For the sake of research, when I took that 2nd dose, after about 47 minutes, it felt like someone had injected me with liquid fire - I believe it to be vascular. I didn't have any trouble breathing and it lasted for 2 to 3 minutes. I do have trouble with panic attacks, but this came "out of the blue", there was no increased pulse or breathing. And I was not thinking about anything happening when it occured. I was just sitting in a recliner resting. Anyway, that is where I am at and will wait for your response and maybe an "ATTA GIRL!!!" for finally getting this done. Just kidding - it is insane, though, that when someone is trying to help you, some of us do not go get our tests run . . . .Lana

Trevor - I posted this previous message on top for reference regarding my new information. My Dr. wanted to check my kidney function because of the Benicar so on 2/21/03 I went and had blood drawn. I had been taking the Benicar for maybe a couple of weeks or a little less. Anyway, on a whim, I said Why don't you test my D's again since we're taking blood anyway? and she said OK, sure. I have not been able to take more than 40 mg of Benicar a day and I feel fine doing it that way even though it is different than what you said. My Dr. called me last night with "dramatic changes" in my 1,25D. She was perplexed and very intrigued by the use of Benicar to achieve these results - and I believe impressed with you as well. The new levels are:

Vitamin D, 1,25 Dihydroxy 19.3 pg/mL
Vitamin D, 25-Hydroxy 15.6 ng/mL
ACE 25 U/L
Creatinine levels all normal

So my new ratio is 1.24 Yeah!!!!!!!!!!!!!!! Down from 2.57 when last checked. So what do I do now? Continue with ARB, doxy, etc. ?
I am down to 4.5 mg of pred a day. Thanks and look forward to hearing from you...............Lana

July 9,2003
Trevor - I had my D levels tested again since my recent flare
with laryngeal sarcoidosis. I have not been able to start antibiotics again as I am still to high on the prednisone. My throat is very puffy and tight.
I re-posted the above info for reference. I was on 40 mg of Benicar a day (above) and now I am on 20 mg every 4 hours (4 times a day). I seemed to do better on the 40 once a day or I have storage in my fat from the flare. Anyway, the numbers are:
Vitamin D, 1,25 Dihydroxy - 44.4 ng/mL
Vitamin D, 25-Hydroxy - 21
Ace not tested and creatine levels are normal.
My ratio is 2.114 and I am symptomatic on a scale of 10 at around 6 or 7 with 10 being the absolute worst. Please help me interpret this.
My Dr. told me to go ahead and drop back down to 17.5 on the pred so I could start my antibiotics but I'm awfully tight. Maybe I should wait a few days. I dropped down this morning from 20 the day before and 22.5 before that and then 25 the day before that. I think I'm dropping too fast. Lana
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-09-03 21:00

Lana,
I wanted to think a little before I answered your question.

4.5 mg of pred a day would mean that your own body is starting to take back the job of dealing with infections. But you also mention 17.5mg pred, which is a dose above the level at which the steroid has totally shut down your own body's actions. I guess that the "laryngeal sarcoidosis" made you increase the pred, but I am guessing, you didn't actually say.

Your 25-D is too high for a Sarc patient. Where is that D intake coming from? I would expect about half of that value (10-12 ng/ml), especially as your 1,25-D has now risen to the upper limit, and as you wean the pred it will go even higher unless you can get the benicar balanced correctly.

Doc would know whether you are dropping the pred too fast, my own memory is that the weaning problems didn't start until about 10mg qd, for me. But I would not be surprised if you have a flare-up due to the combination therapies you have been using.

I am not sure why you increased the pred so much, but it will be even harder to get off it now. Maybe Wendy is watching and can give us the benefit of her experience. Her doctor also insisted she take 20mg+ of pred with the abx, and then she found it hard to wean. But she managed it. If I recall, she balanced 20 mg benicar every 8 hours interleaved with her pred dosage broken up into 8 hour intervals too. Taking one or other tablet every 4 hours. Then she went up to 40mg benicar every 8 hours as her pred fell down through 5 mg. Personally, I would stay off minocycline until I got symptom stability again. Anyway, suggest that to Doc as a possible plan, and see what he thinks.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Lana (---.dialsprint.net)
Date:   07-10-03 06:10

Trevor
Thanks so much - I know you have a lot of us "yanking on your chain" but you are vital to my recovery and I do appreciate all you've done. I have had 3 flares this summer and every one of them has been due to the sun. Just as you said, the flare would manifest 3 days after exposure to the sun. I could bank on it. (Yes, I've learned now. I always was a little slow )
The last one was severe enough for my choice to be hospitalized with a dekadron (sp.) IV or get a shot of steroids at the Dr.s office and go up on the oral pred along with staying under my cpap during the day a good part of the time. As far as why I go up on the pred, with the sarc being in my larynx, the choice comes down to pred or a trach. And I guess I just don't want to be trached. Doc still offers it as an option - it is up to me.
I'm assuming that a lot of the D from the sun exposure is stored in my fat and will take longer to go away. I've read something to that effect in one of your posts.
Wendy, if you read this, please post your experience. I learn so much just reading posts of others' experiences and the replys. Thanks so much -
Lana
 
 Re: My Vitamin D and ACE Test Results are back!
Author: bpeck (---.co.us.ibm.com)
Date:   07-11-03 10:50

This is a question about the shipping requirements listed in your Lab info
for 1,25 D testing.

I noticed that QUEST requires shipping the blood "frozen" on dry ice, and that LABCORP requires it to be "refridgerated".

Can you explain the difference? My Dr. uses both labs, but I want to make
sure I understand the shipping requirements.

Barb
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Bobbie (---.proxy.aol.com)
Date:   07-11-03 14:54

Hi Trevor,
my ace level is 47
25-Hydroxy Vit D is 22 ng/ml normal = 8-38
Vit D, 125-dihydroxy is 86 pg/ml normal = 22-67

Does that mean my ratio is 3.9? And that is high right?
If you have "UV blocking" clothing or film on a car or house windows does that help block out VIT D? Do Sun screens work?
Thanks, Bobbie
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-11-03 15:48

Bobbie.
Your 1,25-D at 86 pg/ml is very, very high. One of the highest that has been measured. It is twice the 42 pg/ml at which you can expect to start losing bone density. You must attend to lowering it immediately. Print out for Doc the Calcium Paper. It has a link in it to the Merck page, print that as well.

If you want to comapre yourself to other SarcInfo'ers plot your values on the charts in our paper at Clinmed.

Now, of course, there is no reason to panic, but you must institute measures to control your 1,25-D immediately.

The first thing to do is to ask yourself where the high level of 25-D is coming from. At 22ng/ml it is about twice as high as what is comfortable for most SarcInfo'ers. 10-12 ng/ml is a better target, and <7 is achievable. You must do whatever it takes to remove the 'fuel' that is creating your high 1,25-D value.

Your D-Ratio is 3.9 and it will increase as your 25-D is brought down towards more normal values. It is high, but I have seen it higher.

UV blocks and protective clothing do nothing to stop our bodies generating 'enough' Vitamin D (too much for sarcies) whenever we are out of doors. Going out of doors is a luxury until you can overcome your Sarc Inflammation. It might take a month or two of antibiotic to get to that point.

Anyway, with your high level of 1,25-D I will bet a month's salary (he he, - SarcInfo doesn't pay me...) that you have extreme sun sensitivity in your skin.

Doc can help you drop the 1,25-D dramatically, within 2 weeks, by prescribing Benicar 40mg three times a day. He might like to start off with 20mg 3 times a day so the shock to your system is not so much as all the hormones in your body readjust. Talk with him about it. The alternative to ARB therapy is certain bone loss, and it will be almost impossible for you to stand the pain from antibiotic therapy with your 1,25-D starting out that high. Nobody has been able to do it from above 60 pg/ml without ARBs (or steroids) yet.

Anyway, you have taken the first step and now you know the status of your inflammation. You must now work real hard on getting the 1,25-D back to my target level of 20-25 pg/ml.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   07-11-03 17:28

Bobbie,

The question about sunscreen has been asked and answered here on SarcInfo many times. If only it were that simple.

A recent article in the June 2003 issue of the Harvard Women's Health Watch newsletter confirms Trevor's advice. In answer to a question about sunscreens ability to block the skin's ability to make vitamin D, Dr. Suzanne Olbricht, M.D. had this to say:

Three recent studies have documented that regular use of sunscreen is not likely to result in vitamin D deficiency. The first was a short-term, randomized, double-blind study of volunteers in Australia. In the second, which lasted six years, National Institutes of Health researchers followed patients with a rare disease called xeroderma pigmentosum, which necessitates rigorous protection from the sun. All subjects in both studies had normal vitamin D levels. The third study, from Barcelona, compared a group of elderly participants who used sunscreen with a second group that did not. During the two-year study period, researchers found that sunscreen use didn't change any of the usual markers of normal vitamin D function. Their conclusion, with which I agree, is that "we should be more concerned about protecting skin from sun than fearing bone impairment."

Keeping in mind that the skin of sarcoidosis patients can be up to 20 times as sensitive to sunlight as the 'normal' population, you can see why we have to be so careful, and stay indoors as much as possible during the daytime. But it's only temporary. When you get your levels of 25-D and 1,25-D down, you'll be able to tolerate more exposure.

Take good care,

Meg
 
 Re: My Vitamin D and ACE Test Results are back!
Author: ~Tammy~ (---.cox-internet.com)
Date:   07-11-03 18:22

Hello Trevor,
I got my test results back to day....all except the D-1,25. For some reason it was not run. The doc was out all day, so I was not able to request it tested. Here are the results. I was REALLY surprised at how LOW my D-25 was. What could be the reason?

D-25 -was 7 ( 10-68) reference
urine Ca- 67 (10-320)
glucose- 83 (65-109)
Urine creatinine -152 (20-320) bun
urea nitrogen-10 (7-25)
serum creatinine -0.9 (0.5-1.5)
BUN/ creatinine ratio- 11 (6-25) calc.
sodium-143 (135-143)
potassium- 4.6 (3.5-5.3)
chloride-107 (98-110)
carbon dioxide- 21 (21-33)
calcium- 10.2 (2.5- 10.4) ***
protein, total -6.7 (6.0-8.3)
albumin- 4.2 (3.5-4.9)
globulin- 2.5 (2.2-4.2)
alb/glob ratio-1.7 (0.8-2.0)
bilirubin total-0.3 (0.2-1.3)
alkaline phosphate-57 (20-125)
ast- 21 (2-35)
alt- 21 (2-40)
ACE- 44 (9-67) This was 6 when I was on ace inhibitor 3 wks ago
SED rate-1 (less or = 2 mm/hr)
I was so disappointed when the D-1,25 was not done! I WILL have it runnext week . It was ordered. I saw the orders myself! Oh well......
 
 Re: My Vitamin D and ACE Test Results are back!
Author: ~Tammy~ (---.cox-internet.com)
Date:   07-11-03 18:26

Hello,
These tests were run by QUEST.. Thanks for your help Trevor!
~Tammy~
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-11-03 18:37

Tammy,
Your low 25-D is expected, coupling that with your high calcium I suspect that you will have a relatively high 1,25-D when the results eventually get back. Quest would have had to send them to one of its regional labs (of course, they may not have done them, but it does take a week)

I explain the reason why 25-D is low in inflammatory disease at this link. The values for 25-D and 1,25-D in that paper are metric values, divide by 2.5 and 2.6 respectively to get to ng/ml and pg/ml.

Your Calcium is high. Doc is likely to be concerned over this and want to give you steroids. Please read the new Calcium tutorial so you will be able to discuss this with him. Benicar will depress your 1,25-D and should bring the calcium back to an average value. Read the new FAQ for more info about dosage.

It is good to see your Alk Phophatase and ALT and AST in a nice range. These are markers of inflammatory organ damage (including liver damage)

Doc may have qualms about some of the other assays, but nothing really stands out to me other than the above issues.

Good work,
Trevor
 
 Re: My Vitamin D and ACE Test Results are back!
Author: ~Tammy~ (---.cox-internet.com)
Date:   07-11-03 20:34

Hello Trevor,
Am I understanding this correctly?...... When my 25-d rises and is higher than the 1,25-d... this is good? I have read alot and am struggling to understand this. Or this is a sign of less inflammation? Help! My brain is so tired!
Thanx..~Tammy~
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   07-12-03 07:54

Tammy,

Because your calcium is high, Trevor is surmising that your unknown 1,25-D is also high. This would explain the low 25-D also because it is the precursor to 1,25-D and is being depleted by the inflammation.

You will try to keep your 25-D low so that there is less precursor to generate 1,25-D. Your 1,25-D will come down with Benicar and surge in response to Minocycline but should never become lower than your 25-D.

We aim for levels of 1,25-D between 20-25 and try to keep the level of 25-D below 15. I know this is a lot to understand but as time goes by, it will become clearer. Just keep reading SarcInfo.

Meg
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Bobbie (---.proxy.aol.com)
Date:   07-12-03 18:03

Hi Trevor,

Thanks for the info. I am trying to stay out of the sun- but since my business is supervising construction projects- it is impossible to stay indoors unless I close my business which has been 20 years in the making.
I will show this information to my Doctor but he says he can't prove I have Sarc with out a biopsy and since it is mostly in my brain I am out of luck. He won't treat it until he has "proof"The good news is (lol) it is spreading to my lungs and if the nodules grow they can biopsy those. I really wish I could write my own prescriptions. The Endicrinologist that ran the vit D tests said it was just slightly elevated and there was nothing to do about it- no need to stay out of the sun or change my diet. I think I need to find new Doctors but that takes weeks to get appointments.
Bobbie
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-12-03 18:14

Bobbie,
You need to get the actual numbers for your D results. Phone the Endo's Nurse tomorrow and ask her to read them off the reports for you.

Your endo almost certainly knows very little about how to assess your D metabolism, you need to have us guide you though their interpretation...

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   07-12-03 22:32

Bobbie,

It's possible to diagnose sarcoidosis based on clinical symptoms alone. This is called a presumptive diagnosis. Diagnosis by biopsy has been required because the treatment carried such high risk. That's no longer true. Your D-levels, when analyzed properly, will give you a good indication of the amount of systemic inflammation in your body. It is perfectly appropriate to treat that inflammation with safe ARBs and antibiotics.

Running your own business that requires outside activitiy doesn't give you a lot of options. Do your best to minimize exposure by wearing long-sleeved dark clothing, a hat that shields well and dark NoIR sunglasses at all times.

Your endocrinologist needs to read the Papers for Physicians from this site. Any suspicion of a rheumatic disease warrants avoidance of all forms of vitamin D. At least this is one thing you don't need his permsission to do.

Hang in there,

Meg
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Bobbie (---.proxy.aol.com)
Date:   07-14-03 09:00

Trevor or Meg,

If my 1,25-D is 86 is that the reason my bones ache?
Bobbie
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-14-03 09:06

Bobbie,
If your 1,25-D was 86 pg/ml then my guess is your muscles would be aching. Your bones would be getting weaker, and your ticker would be having mild arrythymia every now and then. 86 is nearly three times the value it should be at, and higher than most here at Sarcinfo. What was your 25-D value?

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Bobbie (---.proxy.aol.com)
Date:   07-14-03 11:42

Trevor,

Ace was 47 (7-46 normal)
1,25-d was 86 pg/ml`(22-67 normal)
25 hydroxy D was 22 ng/ml (8-38 normal)
I have not had a biopsy yet and therefore my internist won't treat me. The Endo says the vit D is not that high and not really a problem.

I have elevated protein in my spinal fluid
Elevated optic nerve
elevated calcium
Low testosterone 13 ( I am a woman)
Nodule in my lungs - too small to biopsy
Pleural scarring or nodularity
parenchyma scarring or mild inflammation
Parenchyma appears as mild patchy ground glass.

I have constant thirst, weakness, heart palpatations, ringing in my ears, Pressure in my head, intense photophobia, coughing and burning in my lungs, and pain in my arms and shoulders.
I have totally lost faith in modern medicine.
Bobbie
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-14-03 12:14

Bobbie,
Oh dear! Its easy to see why malpractice insurance has gotten so costly in America. Unfortunately the bad doctors penalize the good ones as well.

Well, at least you now know you have sarcoid inflammation. Nothing else is known to pump out a D-Ratio of 3.9 - At least you have a direction to move forward, although it certainly sounds like you will need a new endocrinologist to team with.

Does you Internist know the 1,25-D result? I would suggest sending it to him, together with the "calcium" tutorial at the top of this page, and asking for an appointment (ASAP) where you can talk about therapies. There really is no point holding out for a biopsy, as what needs to be treated is quite clear. You might also print out a copy of the CHEST summary for him. It will let him know why you are feeling the cardiac palpitations. And you should have little trouble getting the Benicar which will set you on course to your future...

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Bobbie (---.proxy.aol.com)
Date:   07-14-03 12:46

Thank you - Trevor. It has been like a really bad dream. I'll let you know how it works out.

Bobbie
 
 Re: My Vitamin D and ACE Test Results are back!
Author: ~Tammy~ (---.cox-internet.com)
Date:   07-14-03 18:20

Hello,
I'll have the 1,25-D rerun tomorrow. I haven't felt very good lately and will probably find out why with this. I'll let you know! Y'all have a great night!
~Tammy~
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Marypat (---.proxy.aol.com)
Date:   07-15-03 05:02

Hello All,

My husband and I sent a letter (along with a couple printouts) to my Dr. requesting a 'therapeutic probe' of Benicar and Minocin and she called and left a message that she would not treat something that hasn't even been diagnosed. Oh, well. Thank God that I know how to keep my symptoms to a minimum due to you folks at SarcInfo!

Maybe something will show on the MRI later in the month.

Bless you!

Marypat
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Meg (---.188.239.198.euc.wi.charter.com)
Date:   07-15-03 06:49

Marypat,

That was an incredibly callous reply, considering the long list of symptoms you shared with her and your previous biopsied diagnosis. A competent doctor won't wait for major organ damage to diagnose sarcoidosis. An MRI is unlikely to reveal anything definitive.

This doctor refuses to accept that you have significant systemic inflammation with a D-ratio of 2.6 and she doesn't sound interested in helping you. Have you considered getting another opinion?

Meg
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-15-03 06:58

Marypat,
Actually, my advice would be to look for a new physician. It is clear that you have something wrong with you, you have had a positive biopsy. Doc can't be sure if she agrees, but you are suggesting is a relatively safe "therapeutic probe" to see if that speeds diagnosis up a bit. It can "do no harm".

The response from your doctor to your suggestion does not seem logical. She might have pointed out dangers which she might forsee in the probe, or reasons why it was a waste of time. But an inisistance on a definite diagnosis seems to expose you to risk of further organ damage.

The concept of a therapeutic probe is to explore the possibility of disease before a definite diagnosis is possible.

..Trevor..
ps: she can phone me if she want to discuss any of the issues..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Marypat (---.proxy.aol.com)
Date:   07-15-03 12:26

Trevor, Meg and All,

You Guys & Gals are teriffic!

I'm not sure what we will decide about a doctor.

We leave for Kitty Hawk, NC this Saturday (Mom's 80th Birthday) and I'll do my darnest to stay out of the sun.

Keep up the Wonderful job you are doing!

I'll let you know if anything happens.

Marypat
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Wendy (---.asm.bellsouth.net)
Date:   07-17-03 08:34

Hi Trevor,

I have been reading this forum for some time, but haven't needed to ask you a question until now. I had my BP taken at my doc's office yesterday and it was higher than normal (162/95). When I took it this morning right out of bed it was 165/102. This scared me to death!! My current ACE level is 113. (as of October/2002)

I was diagnosed with pulmonary sarc 7 years ago. I started with painful eye scloritis (spelling) and was given dexamethazone for 3 months. I also had a lung biopsy which verified the sarc. I was then given Azmacort 3 puffs a.m., 3 puffs p.m. I also have asthma and lots of food and pollen allergies. I currently take 1 Allegra tab daily (the 12 hour one), 2 puffs of Azmacort, ocean and dry eye drops and that's it. I also have 5 other family members (all female) with sarc including my sister and deceased mother.

I am a lady golfer who plays about 3-4 times per week. I currently am experiencing a dry cough, shortness of breath and of course this high BP.
Could this be from the sun exposure. I have an appointment with my Pulmonary doc next week, and when I called and tried to get the 1,25-D, dihydroxy and the other hydroxy blood tests along with ACE and blood calcium, the nurse went ballistic on me, and told me that I not only couldn't have the vitamin D toxicity tests, but that it was not necessary.
This is because she "never heard of it" in relationship to Sarc. (same old same old!!!) LOL

Anyway, I have also just recently developed acid reflux along with these other symptoms. I am going to try and get to see my Internist ASAP, and would greatly appreciate your thoughts on my symptoms and meds you recommend. PLEASE don't tell me that I have to give up golf!! I couldn't stand it!! LOL

Thanks for a great site, and your infinite wisdom.
Wendy
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-17-03 08:53

Wendy,
I have no idea whether your golf is causing deterioration of your health, but it certainly could be. The only way to tell is to get the 1,25-D and 25-D measured and take a look at them. Your ACE is very high, and that doesn't bode well...

It is so easy to "put off" treating sarcoidosis until "later". Doctors don't help, either - "it will go away on its own", they say - sure Show me the proof of that...

High BP was what stopped me in my tracks (back in 1999). It was 160/98. Doc sat me down and had a long talk/argument with me. Now my BP averages 105ish/55ish which rises with herx to 115ish / 60ish. And I have a new life ahead of me.

Maybe a new life is worth making some sacrifices for...

..Trevor..
ps: show your internist the FAQ document with the treatment steps in it. None of them involve any real risk - he will probably go for it, as dozens of other PCPs/internists have already done...
pps: all your allergies, everything you mentioned, will go away once you have killed the sarc bugs.
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Wendy (---.asm.bellsouth.net)
Date:   07-17-03 09:15

Thank you Trevor.

I will now definitely get off the computer and call my internist.
I was just wondering about the high BP. If I have elevated vitamin D could this be causing it? Also regarding the Benicar. Is this the only medicine I can take for the high BP?? My husband takes Zestril which is an ACE inhibitor. Does this help or hurt my Sarc and ACE levels??

Regarding the golf, it was the sun exposure I was wondering about, not the game!! LOL

FYI, my ACE was almost 200 when first diagnosed, but after Dexamethasone has always been around high 60s to low 70s, so never really in the "normal range". It just started going up again last fall.

Thanks again,
Wendy
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-17-03 09:25

Wendy,
Absolutely. The 1,25-D releases Angiotensin II as part of the inflammatory cycle, and that is exactly what is raising your BP.

Please understand that ACE inhibitors have nothing whatsoever to do with ARBs (Angiotensin Receptor Blockers) and are not equivalent in any way.

Benicar is the best ARB by far. Look at the new F.A.Q. at the top of the page for info (print it for your internist)

Keep smiling...
..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Wendy (---.asm.bellsouth.net)
Date:   07-17-03 10:31

:0)

Will do!!
Thanks,
Wendy
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Donna (---.jan.bellsouth.net)
Date:   07-18-03 09:07

Trevor,

Here are my test results:

1,25 Dihydroxy 30.4
25-Hydroxy 16.4
Angiotensin 36

My doctor has decided that I should take 10 mg every 8 hrs for 7 days, then increase it to 20 mg and so forth. He is very positive and has asked me to take notes daily. I mentioned that my ins. company may need a letter from him to cover everything and he will do that if needed.

I feel very positive about the upcoming weeks. The only thing I have a problem with is staying out of the sun. My income is the major one in the family. Sometimes I have to go out during the day and then of course on the way home (30 min. drive). Any suggestions (from anyone) on how to work a schedule of work, 3 children, and shopping (before school stuff)....and still stay out of the sun.

Donna
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-18-03 09:29

Donna,
That dose of Benicar should work OK.

Your D-Ratio is not too high, and your 1,25-D and 25-D are both only about 50% above where they should be. This is consistent with the skin manifestations you mentioned on 12 June. You have pretty good control over your D intake, just try a little harder to get it down into the 10-12 ng/ml region and you will feel better still...

One of the secrets of driving is to wear really dark NoIR glasses and to wear gloves to cover the exposed skin on your hands. A sweater or similar long sleeve should cover your arms. Cover your lap as well, either wear slacks/trousers or use a lap rug. What a pain..yes, I know..but it works reasonably well.

..Trevor..
ps: A balaklava will protect your ears and neck (nah - I am just kidding - sorta...)
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Brian (---.ne.client2.attbi.com)
Date:   07-18-03 11:43

Good Afternoon Trevor,

I've been on the Minocycline 100 mg every other day for six weeks; I started it June 2. If you'll remember, the doctor would not prescribe the benicar for me - Meg responded to my last message about this - so I've just been going without it. I haven't been suffering too much.

I've just received two out of the three pieces of bloodwork back. My ACE is 97 (up from 73 in April) and my 25-d is 20 (i believe it was 16 or 19 in April, do not have results handy). My ACE was 100 in February, before dropping to the 73 level in April. My 1, 25-d was 56 in April, and I'll have my this result next week.

If you recall, I cannot really limit my sun exposure too much, as I have a job that entails working outside at various times of the day. My question for you, is do you have a general idea of how much recovery is delayed when someone is unable to limit sun exposure, but is able to limit exposure through food.

My blood pressure is still quite high (unnerving to me, as I am only 33) at about 140/90-100 to 150/90-100, morning or evening, it doesn't change much. High blood pressure does run in my family, but my blood pressure was never consistently this high before starting the minocycline. My heart rate is normal at about 65 to 75 beats per minute, and has never really fluctuated.

Am I possibly still in a stage where the minocycline is working, and driving up my bp and ACE, and that because I do not have the benicar it is taking longer for me to get through this stage? As I recall, you said that the bp would be driven down over the initial two to three week period, but seeing as I've never taken benicar, I am wondering if I'll have an extended recovery time. I am going to approach my PCP about the benicar again next week, as soon as I have the 1, 25 results, which unfortunately, I expect will be as high as the last time.

I can definitely say one thing positive. Since I have been taking the minocycline, I have been able to breathe deep for the first time in about 8-10 months. Before taking the minocycline, I always felt that I could only breathe in about 1/2 way...that has changed. I still have difficult breathing days, but not like before.

Thanks,

Brian
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-18-03 12:01

Brian,
I don't have any quantitative idea yet how the sun affects folks. In any case, once you have started the minocycline your sensitivity should have been reduced. Let's assume that is the case, since you don't seem to have had as much skin involvement as many of us

You know, the reason you get herx when taking the antibiotic is that caustic chemicals are being released in your body (cytokines) when the bugs are being killed. Benicar has the ability to block TNF-alpha (thats the same cytokine that some folks pay $11,000 per year to block with Remicade or Enbrel) as well as Angiotensin II (thats a free bonus)

You will note that most people have ACE and 1,25-D values rising during the first 6 months of antibiotic therapy. There is more inflammation in your body from the herx, and it reflects in the bloodwork.

It really is important for Doc to realize that you need to block the harmful effects of the Angiotensin II that is being generated. Not to mention the 1,25-D.

In your case Doc can prescribe you Benicar at the 40mg every 6-8 hours fully under FDA guidelines, as your BP qualifies you as mildly hypertensive. He is not even stretching any rules, since the prescribing instructions say "dosage must be individualized". Read the new FAQ through again, and maybe that will have in it the info he needs to reassure himself that the ARB therapy will be safe for you. At least it will help your BP

Minocycline made a 25% difference to my FEV1 PFT within a month. That certainly equates to being able to "breathe deeper"

..Trevor..
ps: as for BP 'running in the family', my BP was much the same as yours for a decade, and then it went up to 160/98. It now rarely rises above 110/60. So maybe you can break that family tradition...
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Meg (---.188.239.198.euc.wi.charter.com)
Date:   07-18-03 19:29

Donna,

The measures that Trevor advises worked for me when I had to go in and out of the car because of my work. I'm not sure how you handle a busy life with 3 children. You'll just have to chose try to minimize the times that you must be out with them and you'll be that weird Mom who's all covered up. I can just see the kids rolling their eyes.

Are there any stores, like Wal-mart superstore, that are open 24/7 in your area? Perhaps you could leave the kids with someone late at night and get your shopping done then. Be sure to wear your indoor sunglasses in the bright lights of those stores.

Meg
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Wendy (---.asm.bellsouth.net)
Date:   07-19-03 01:32

Good Morning Trevor,

Well I went to my Internist today, and he agreed that my BP was way too high. It flucuated between 150/100 and 140/92. He read your article about the Vitamin D, ACE etc., and thought that it couldn't hurt to get my levels (including calcium) checked out. But when he read your prescription levels of Benicar, he totally freaked out. He decided to "stay away" from both ACE inhibitors and blockers. Since I have Asthma, he said that the only BP medicine I could take was a calcium blocker, so he prescribed
180MG of Cardiziem LA once per day. He also thought that since I am 52 that perhaps the high BP is from the onset on menopause. He wants to start me on the Cardiziem and keep me on it, until I finish menopause (maybe 1 year or 2) then take me off, check my hormone levels, and see if the high BP was caused by it.

The other symptoms I am experiencing are, dry cough, shortness of breath and acid reflux. I must say that I was pleasantly surprised at how much the doc agreed with your theory, just didn't go along with your treatment.

Would appreciate your thoughts on his conclusions. Will let you know my blood results when I get them back next week.

Thanks again for your help.
Wendy
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-19-03 01:59

Wendy,
I am a scientist. There is no way I can explain to you why your doctor "freaked out". However, I can say that to "freak out" would be the last reaction I would want from any doctor treating me.

There are around 50 folks here on SarcInfo whose doctors want them to get well. Want them to get well so badly that they are prepared to contain their emotions, do some reading, maybe even stick their necks out a little, by prescribing ARBs to help those patients get well.

You might be able to repackage your request to Doc a little more diplomatically (for example, as I do in the new FAQ), but my feeling is that I would go looking for a doctor who could take fresh look at me, all of me, without ignoring the sarcoidosis. If I was sick in hospital, with my Doc making life-and-death decisions, I would want to know that those decisions were being made with all the factors being considered in a scientific and logical manner.

Trevor
ps: Wendy, the issue of sarcoid-related asthma is discussed in this thread
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Anita D. Haynes (---.lvcablemodem.com)
Date:   07-20-03 22:14

Made an appt to see the Lung Doc on Friday. I did not want to wait until my next scheduled appt for my test results.

Vit D
1,25 - 79
25 - 16
Ratio - 4.9375

Calcium
Blood - 9 (Lab Range 8.2-10.4)
Urine - 57.8

I don't think my ACE level was checked. This Doc said that he gets so many referrals based solely on elevated ACE levels that he looks for other indicators such as calcium and Vit D.

I guess this is as definite as I am going to get. He told me to watch my calcium and Vit D intake/exposure. I am in Las Vegas, with a job and I'm supposed to avoid the sun! I bought a hat with a brim (that's all I have to say about it). I have noticed lately (since it really got hot, above 100 degrees)such as the swallowing thing, any exertion and I breathe hard, and just feeling "trashed" after a day of running errands, even using the 'short bus'. I also find it takes more one good night of sleep to recovers.

Doc cancelled the next appt and told me to come back in 6-months. We discussed the antibiotics and he is hesitant since they have their own rection to the sun. He also was quite honest in saying that if push came to shove, he would opt for the cortisone again as opposed to an immuno-suppressant. He said that he would have me go over into a diabetes for a few months than risk something such as lukemia from the suppressants. I am going to try and bring those levels down but my blood calcium is alread quite low. How many points will I need to lose before it is reflected in my D ratio?

By the way, all of these salads give me indigestion but I'm am trying to lose the weight.

Everybody (the Docs) think that I have it but I just have no lung manifestation. Also, the Lung Doc realizes that, by default, he is handling the sarco. Prim Doc to obsessed with my weight and diabetes. Eye Doc is trying to get my vision back. Skin Doc is just in a 'slice and dice frenzy. Lung Doc is "it" by default.

Anyway, I don't know if I feel better knowing or not. I guess I am in that stunned state. Give me a few days to recover from the sun exposure and plot my next move. Thanks for listening, as always.

Anita
DFOSW

Love a Librarian!
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-21-03 07:55

Attagirl, Anita,
Now you know what is wrong you can start strategizing the rest of your life...

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: ~Tammy~ (---.cox-internet.com)
Date:   07-21-03 17:43

Hello,
I got my D-Metabs in full:

D-25-( <7 )- ref.10-68
D-1,25 ( 30 ) - ref. 15-60
serum Ca- ( 10.2 )- ref. 2.5-10.4
If I calculated correctly, my ratio is 4.28... right?
Tell me what's next! Thanx!
~Tammy~
P.S. They ended up drawing these tests a week apart.. I don't know if that will make a big difference
 
 Re: My Vitamin D and ACE Test Results are back!
Author: ~Tammy~ (---.cox-internet.com)
Date:   07-21-03 18:02

Hello,
This may be a silly ???, but with the d-25 so low, would that cause bone pain? Bone being reabsorbed?????? I am still having alot of hip and middle spine pain. I was on Pred and know this could be a factor.
~Tammy~
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Hayden (---.lnh.md.webcache.rcn.net)
Date:   07-22-03 09:05

Trevor,
Please excuse error in sending last message.

Doc called today with D results on blood drawn 7/10/03

Vit D 25 Zero
Vit D1,25 23 of range 16-60

Lab said test was repeated on the 25 and zero obtained again.
They also said someone else tested zero several weeks ago.

Is zero impossible? Thanks in advance.

Hayden
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-22-03 10:20

Hayden,
The message above you (Tammy) was 25-D <7 ng/ml, which is the lowest value the lab can measure. I am sure that is what Doc meant by "zero".

Your 1,25-D is right in my target zone.

Your D-Ratio indicates some inflammation, maybe a lot.
If we assume 7 as the value of your 25-D then the D-ratio is 3.2
I wouldn't place a lot of emphasis on the actual D-Ratio value,as your 1,25-D is less than 25-29, the healthy mean. But I am prepared to say that it indicates systemic inflammation (which is what would be expected) and that you have VERY good control over your D-metabolites.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   07-22-03 11:10

Tammy,

While it is true that very low levels of 25-D are associated with bone pain and resorption in normal people, you are (instead) a person with sarcoidosis, and that changes the vitamin D/hormone D metabolism. 25-D has no biochemical role in the body; hormone D is where the activity is.

Think of it this way: Visualize a fire burning in a fireplace and a stash of split wood on the hearth beside it.
1,25-D is the wood that is burning in the fireplace.
25-D is the wood in stacked on the hearth. It isn't burning.
Imagine there is a magical machine set up to transfer wood from the hearth to the burning fireplace if the fire burns down below a pre-set level. This would be what happens in normal people with normal vitamin D metabolism.

What happens with sarcoid patients, having abnormal vitamin D metabolism, is that the magical machine keeps transferring wood to the fireplace fire, even though it is bigger than a normal fire. The transfer of new wood doesn't stop, even if the fireplace fire is raging out of control.

The reason sarcoidosis patients have serum levels of both 25-D and 1,25-D tested is so that doc will know how much wood is stacked up on the hearth, as well as how high the fire is burning. You know that you have adequate levels of hormone D (1,25-D) because you have that number from your blood test. You have more reason to be concerned about high levels of hormone D, which can also cause bone resorption.

Low 25-D can lead to bone resorption in normal people because hormone D gets too low, and that is what causes bone resorption (not 25-D per se).

Belinda
 
 Re: My Vitamin D and ACE Test Results are back!
Author: ~Tammy~ (---.cox-internet.com)
Date:   07-22-03 18:37

Trevor,
Please help me get this. Am I to understand then as Hayden above , that I also have very good control of my d-metabolites? I am not quite sure how to interpret this. My ratio is 4.3. I know to continue watching my D-diet, and continue with the mino/benicar. But does this ratio not show significant inflammation? Should I not have a higher D-25 reading? Will that increase? Does the elevated serum Ca play a role in interpreting the extent of Sarc activity in comparison to my D-ratio? This will be my guide to whether or not the Sarc (AKA-Bad-Bugs) are decreasing or not? Yes? I know the ACE test is not relevent/consistant. Nor are X-rays. I want to understand this completely. I have an appt with the Dr. on 7/30. I want to be able to talk and explain if I need to. I really appreciate you taking the time to help me with this. Thank you!!
~Tammy~

p.s. Thank you Belinda for the above mental picture. It did help!
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Tammy (---.cox-internet.com)
Date:   07-23-03 06:10

Goodmorning Trevor.
Just hoping you might be able to answer my questions above. I know it's early! Thanks so much for your help! Have a great day!
~Tammy~
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-23-03 06:21

Tammy,
Yes, it is 6am.
I would love to be able to personally answer each of your questions, Tammy, but I keep getting the feeling that I have answered them so many times before (for other folks).

Yes, your control is as good as Haydens, and yes, your D-ratio indicates systemic inflammation.

Your 25-D value will only increase if you eat Vit D or go outdoors. Neither of these things will be good for your 1,25-D level, which would then go up.

Doc will not see improvement on your chest xrays for at least 12 months. But Doc will not see them getting worse, either.

Please take a look through all the pages of topics (click on "Older Messages" at the top right of the topic list) and try and work through the background to your questions. There is a "search" button, as well. And finally, all the tutorials and papers at the top of this page. The main paper, "New Treatments Emerge..." explains how 25-D and 1,25-D interact in some detail.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Tammy (---.cox-internet.com)
Date:   07-23-03 06:42

Thanks Trevor for being patient with me. It takes awhile for all of this to piece together and start looking like a whole picture. I believe it's the little details that are harder to see, and I keep needing to take a second (or third...) look! LOL! Have a wonderful day. Hope your lymphocyte study is going well.
~Tammy~
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Christian (---.sympatico.ca)
Date:   07-23-03 10:10

Hi Trevor,


Just received some new test results for 1,25 D (25 D not in yet). The blood was drawn on june 11th and the score is 162,7 pmol/L (the range given by the lab is 41,0-145,0). I don't quit understand why this calcitriol is not going down. I am avoiding any kind of vitamin D and I'm taking Minocin + Diovan. What is going on? Overall my symptoms are not improving. Am I doing something wrong?



Christian
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-23-03 11:37

Christian,
The antibiotic causes herxheimer. This is inflammation in the tissue, as the microbes have their cytoplasmal membrane ruptured, and the nasty stuff inside pours out inside the cells of the granuloma. The level of 1,25-D in your body is increased by the antibiotic. You need to stop antibiotic about a week before having blood work drawn if you don't want to see the effect of the antibiotic.

The ARB suppresses the extra inflammation generated by the antibiotic, and makes it tolerable. The two therapies are maintained in balance as you juggle your antibiotic dosage.

I hope this helps, let's see what the 25-D comes back as.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Marlene (---.np7.np.dialup.nauticom.net)
Date:   07-27-03 12:28

Hi,
In 10/01 a skin biopsy showed sarcoidosis, ACE at 123. I considered ignoring the hoopla of having sarc, with attention from a variety of doctors, till recently tooth and jaw pain sent me flying to the dentist. The dentist found nothing on xray, so I figured, sarc? The D tests I asked for and recieved from the PCP, but have not had any discussion of results yet: ACE 169, D 25, 21 and D1.25, 56. Without test results, he gave me a script for 50 mg. of minocycline once a day and when I mentioned ARBs, he handed me sample bottles of Cozaar, a once a day dose at 50 mg. I decided to wait for results and see what your reaction was concerning Cozaar- ineffective? and the dosage for Minocycline. According to this site once a day won't cut it. I am to go back in a month and have the D tests checked again in three to follow up. I am told sarc is in my lungs [progressively worse or "on-going", stage 2], some skin lesions, and probably the spleen which shows as moderately enlarged with "bizarre" [interesting verbage in subjective radiologists' reports]nodularity. One report says the "cardicac silhouette" isn't enlarged and three sentences later says it is... I suppose believe which ever I choose? The pulm. doc had no comment. I also know I have gallstones from the CT findings, but so do a lot of other people. The sarc lesions on the knee were apparant before breast cancer in 10/00. Reading about others' symptoms made me realize similar symptoms I have. I also know to avoid sun-it makes a big difference- but difficult for others without the disease to fathom... that healthy glow of red makes me sick.
Marlene
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-27-03 12:52

Marlene,
Sorry that the site was down last week. Everything fixed now, though (cross fingers).

Your 1,25-D is very high, at 56. Well above Merck's maximum of 45 pg/ml. But I guess you knew that (the calcium and Vit D tutorial at top left of this page has a link to Merck).

Your 25-D is higher than I would expect, indicating some vitamin D creeping into your body, I think. Normally I would expect to see a 25-D half as large as yours. Lowering it from 21 ng/ml to the 10-12 region (or even below) should reduce your symptoms even more.

However the inflammation has to be treated. 100mg minocycline qod would be a very good step towards that. Read the dosing Tutorial at top right of this page. It is important to only take the antibiotic every 2 days when going after the cell-dwelling bugs.

Maybe the "cardiac silhouette" changed because the heart was beating

Cozaar is the earliest ARB, and does not have as many 'features' as the newer ARBs. For example, here is a recent study showing Benicar suppressing liver fibrosis in rats. These beneficial effects (secondary to BP reduction) seem to have been improved as the pharmaceutical companies have continued their ARB research.

I have tried Benicar, Diovan, Avapro and Atacand, and found them effective in that order. I suspect Cozaar would be below Atacand, but I have no data to support that guess. In any case, my experience is that you would need to take any of these ARBs at 6-8 hour intervals for them to be effective.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Meg (---.188.239.198.euc.wi.charter.com)
Date:   07-27-03 21:38

Marlene,

IMO, there's not much point in repeating your 1,25-D test until you have an effective antiinflammatory blockade in place for at least 2weeks.

Perhaps the following abstracts of studies comparing Benicar's efficacy to the other sartans like Cozaar, will convince your doctor to order Benicar.

A caparison study of losartan, valsartan and olmesartan (Benicar) showed that olmesartan was more effective in reducing diastolic blood pressure after 8 weeks of therapy.

This study shows the safety of doses higher than 40mg a day:
Antihypertensive efficacy of olmesartan medoxomil, a new angiotensin II receptor antagonist, as assessed by ambulatory blood pressure measurements.

This study shows the rationale of higher dosing for sarcoidosis patients: Angiotensin II receptor on BALF macrophages from Japanese patients with active sarcoidosis.

FDA guidelines that allow the "40mg Q8hr dosage" and state that the "Dosage must be individualized" and "The overall frequency of adverse events was not dose-related", might convince your doctor to order Benicar at the proper dosage to treat sarcoidosis.

This study shows that Benicar (CS-866) was safe and well tolerated at doses of up to 160 mg/day. Pharmacokinetics of CS-866, a new angiotensin II receptor blocker, in healthy subjects.

After you've been taking the Benicar at the proper dose for a couple weeks, ask Doc if you can begin minocycline at 50mg every other day, titrating up to 100mg, then 200mg every other day, depending on how you tolerate the Herxheimer reaction.

Meg
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Annette (---.user.cigna.com)
Date:   07-28-03 11:07

First I would like to thank Meg for introducing me to this site. It is very informative, but sometimes confusing.
My first Vitamin D and ACE test were in March. The results are:
Calcium 9.3 mg;
Vitamin D, 25 - 15 pg;
Vitamin D, 1, 25 - 68 pg;
ACE - 74

After reading Remission in Sarcoidosis, I stopped taking my multi-vitamins and eliminated foods with vitiamin D. After doing that for four months, I took another Vitamin D and ACE test in July. The results are:
Calcium 9.1 mg;
Vitamin D, 25 <7 ng;
Vitmain D, 1,25 - 64 pg;
ACE - 96

I was surprised how low my vitamin D,25 dropped. I am taking my multi-vitamins again to bring that back up.

I am seeing a pulmonologist at Mount Sinai Hospital in New York. This hospital and doctor are considered the sarcoid experts in NY. I brought some material from this site that talks about the Benicar and Minocin therapy. He told me that there wasn't any clinical trails done on these medications and he does not believe in it. My pulmonogist then prescribed Methotextrate for me, which I am afraid to take because of the side effects. The sarcoid has attacked my sinues. Even after having sinus surgery, I still suffer from yellow mucous and constant coughing. My PCP has given me Biaxin for the mucous which has helped, but the cough is still there. Even though my PCP has ordered the Vitamin D and ACE test for me, she does not want anything to do with the Minocin therapy. She wants me to see my pulmonologist for that.

Did I do the wrong thing by eliminating Vitamin D from my diet? Where do I go from here?
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-28-03 11:12

Annette,
No you don't want to take multi-vitamins. A low 25-D is perfect. The only important value is the 1,25-D which is the active hormone. You can't afford that to go any higher. DON'T TAKE IN ANY VITAMIN D based on those results.

Every thing looks what I would expect. Your D metabolites indicate you are ready for Minocycline therapy. Everything is ready.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Sandy (---.dialsprint.net)
Date:   07-28-03 12:03

I started the Minocin October 10, 2002. I continued until April 30, 2003 when I could no longer get the prescription renewed. I have been unable to get the Benicar. After a year of trying to get the blood work done it took my primary care doc to be on vacation to get the tests run. ACE was not run. I went into the doc because I have been "hurting" upper back and slightly nauseous for two weeks. I thought I had better see where the sarc had attacked this time. Here are the results:
Comprehensive Metabolic Panel: At ARUP Lab in Salt Lake City
Sodium 138
Potassium 3.3 (L)
Chloride 99
CO2 content 29
Glucose 110 (H)
BUN 21 (H)
Creatinine 1.0
Protein, total 7.0
Albumin 4.0
Globulin 3.0
Calcium 9.1
Bilirubin, tot 0.2
ALT 26
AST 14 (L)
Vitamin D, 25-Hydroxy 10.6 (L0
Vitamin D, 1,25-Dihydroxy 27
Blood Count with Manual Diff: (just the Lymph and out of range values)
RDW 15.0 (H)
Lymph% 28
Lymph# 1.8
ANISO 1+ (H)
There are more values if you need them. Thanks for everything
Sandy
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-28-03 12:56

Sandy,
It looks like that 6 months of minocycline did you a lot of good.

I see a D ratio of 2.5 (which is not too high) coupled with a 1,25-D which is pretty good.

Your Lymphocytes are just about normal, also indicating not a lot of really bad inflammation. ANISO indicates variability, which correlates with the mild anemia and low MCV often seen in Sarc Patients, I guess. ANISO is a new test to me... Interesting...

Potassium marginally low probably indicates an inbalance in your Renin-Angiotensin-Systems, which is also common in Sarc. BUN marginally high indicates liver/renal problems which might also be due to the Sarc (who knows?)

Glucose is about right. 100 is a paranoia-limited-value, in my opinion. The thershold used to be a lot higher than that (20 years ago). But it is worth watching. 'Splenda' is the magic word...

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Meg (---.188.239.198.euc.wi.charter.com)
Date:   07-28-03 18:56

Annette,

This recent study done at Columbia-Presbyterian might persuade your pulmonologist that "mycoplasma-like organisms cause sarcoidosis". Logically then, sarcoidosis will remit when the responsible organisms are eliminated. Studies such as this one have demonstrated that minocycline is effective in treating sarcoidosis. Perhaps your pulmonologist would be interested in starting his own clinical study with you as the first patient.

Many of us have had our specialists or PCPs give us the same excuses you were given. There are no drugs approved by the FDA for the treatment of sarcoidosis. Yet they would prescribe for you drugs known to have dangerous consequences and that do not provide a cure. Keep in mind that you are asking for 2 safe, simple medications and you will take responsibility for the consequences (and benefits too!)

Your PCP may be reluctant to override any orders given by the pulmonologist unless you assure her that you want her to be your primary for your sarcoidosis too. Point out to her that minocycline is no more dangerous than the Biaxin she ordered and much more effective against the CWD bacteria.

I hope you won't give up. Having been to the Mayo Clinic, I know how intimidating these specialists can be. But this is your health and since your requests are reasonable, you should expect them to be met.

Good luck,

Meg
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Annette (---.user.cigna.com)
Date:   07-29-03 05:32

Trevor & Meg,

Thanks for your quick response. I do have a prescription for Minocyline 200mg. I only have enough for 10 days to be taken twice a day. Should I take 1 a day to start with 100mg or is twice a day o.k? Currently I am taking Biaxin which will end on Thursday. Do I have to wait a week or so before starting Minocycline or can I start it right after the Biaxin is finished?

I am concerned about the 25-D level getting lower than <7 when the report states that a Vitamin D level lower than 20 ng should be considered a deficient status. What is considered too low for sarcoid patients?

Saturday August 2nd Mount Sinai Hospital in New York, at 100st & Madison Avenue from 11:00 AM - 2 PM is having Sarcoidosis Awarenesss Day. There will be doctors there from the hospital. I will bring some of the material from this website and ask more questions about Minocycline therapy.

Annette
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-29-03 05:41

Annette,
You can start Minocycline immediately the Biaxin is finished, and even before that, if Doc suggests so.

"I am concerned about the 25-D level getting lower than <7 ". Why? The people who wrote the report failed to tell you that 25-D is an inactive metabolite. The active hormone is 1,25-D and you should focus on that one. Read the tutorial on Calcium and Vit D, and look at the references it cites.

In the Minocin Dosing Tutorial you will find out why trying to take Minocycline every 12 hours will almost certainly make you pretty ill, and not do as effective a job against the cell-dwelling bacteria.

If I can help in any way with your preparation for Sacoidosis Awareness Day please just ask. I suggest you should print out the two tutorials above, plus the "How my pathologists..." one and the paper "New Treatments Emerge..." The Docs can call me at any time.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Freddie Ash (---.ipt.aol.com)
Date:   07-29-03 05:44

Hi Trevor, Belinda, & Meg

This is Fred in WV. I just want to tell you that there is an article about vitamin D in the WOMAN'S DAY mag, the Sept 1, 2003 issue. It is found on page 118. This is what I had right after I was born, in Sept 1, 1939. Mom's milk did not have the vitamin D it should. I had the rickets. This may have been the begining of my sarcoidosis, maybe???

Your friend in sarcoidosis
Freddie
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-29-03 05:50

Freddie,
That is really interesting. I haven't heard of anybody getting rickets and going on to Sarc.

Belinda is on vacation for a few days, and I think she will be very interested to follow through when she gets back. Meanwhile I will have a think about it too.

When did the rickets go away? I wonder if the treatement might have worsened your sarc? - my mind boggles - let's correspond by email, freddie.

..Trevor..
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Bonnie (---.cable.mindspring.com)
Date:   07-29-03 05:55

Meg,

Are you saying Mayo won't consider the Minocyline then?

Bonnie
 
 Re: My Vitamin D and ACE Test Results are back!
Author: Meg (---.188.239.198.euc.wi.charter.com)
Date:   07-29-03 06:58

Bonnie,

The Mayo Clinic in Rochester, MN has 2000 doctors and I've only seen a few of them. It's certainly possible that you might find an open-minded, receptive physician there.

I got the brush-off from a pulmonologist and my neurologist told me to come back in six months, so I chose to consult with my PCP, who is an Internist. I'll be returning to the Mayo neurologist soon with 90% improvement and lots of information about treating sarcoidosis with ARBs and antibiotics.

Meg
 
 Re: Archive of Vit D and ACE Test Results to 7/29/2003
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-29-03 09:36




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Historical perspective on Sarcoidosis:


  1. The John's Hopkins Vasculitis Center: Prednisone Side Effects (incl. PHOTOS and PHOTOGRAPHS)
  2. Steroid-Treated patients Have higher risk of Cardiac problems
  3. "Evidence Growing That Inhaled Steroids, Like Steroid Pills, Can Cause Bone Loss"
  4. "Corticosteroids contribute to the prolongation of the disease by delaying resolution"
  5. "No data to suggest that corticosteroid therapy alters long-term disease progression"
  6. Cochrane Review - "Oral and Inhaled Corticosteroids have no discernible effect on lung function"
  7. Prednisone Improves Symptoms but not Lung Function in Sarcodiosis
  8. There is no conclusive evidence that corticosteroids affect the development of irreversible pulmonary damage
  9. Clinical Guideline For Treatment Of Arthritis Pain
  10. Angiotensin II receptor on BALF macrophages from Japanese patients with active sarcoidosis

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