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 The material here provides useful background, but most of this site is now out-of-date.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 General Questions to 25 May 2003
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-09-03 21:40

This is the Archive of General Questions that were left in the two weeks leading up to 25 May 2003

Welcome to SarcInfo
Trevor. (Admin)

ps: Don't forget to click on the "Older Messages" link at the top-right of the front page, there is much more information here than can fit on the front page.
pps: There is a "Search" button on every page. Make sure you select a date range of "all dates" if you want an exhaustive search of the whole database
 
 Re: ***** Please Post General Questions Here *****
Author: Hayden Andersen (---.lnh.md.webcache.rcn.net)
Date:   05-10-03 13:10

I recently discovered this website while looking for information on RA.

Now I wonder how much of these posts and information on Sarc. is applicable to RA.

Any comments would be appreciated.
 
 Re: ***** Please Post General Questions Here *****
Author: Chel Dee (216.63.192.---)
Date:   05-10-03 14:07

I have just recently been told that I probably have neuro sarcoidosis. I'm supposed to find a support group but I live in Kansas and I can't imagine that there is anyone here who would have a group. Apparantly I have a pretty rare case. But that's probably just in Ks. I really just need some direction on where to go next and maybe try to find out more info on what's going to happen with the rest of my life. Thanks to anyone who can help me. Chel
 
 Re: ***** Please Post General Questions Here *****
Author: leslie (---.proxy.aol.com)
Date:   05-10-03 15:03

Can sarcod make body temperature lower? SInce my "big" blowup, my temp seems to be 97' instead of the 98.6 that was about my normal. I have low blood pressure normally. I am always cold except for night sweats
 
 Re: ***** Please Post General Questions Here *****
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-10-03 16:01

Hi Chel,

Welcome to SarcInfo. Everything you need to know is right on this site.

Please spend some time reading the patient tutorials and physician papers at the top of the page, the links to articles at the bottom of the page and the topic messages (threads), especially those that are starred.

There is also a search feature on the site where you can type in words and find specific intormation. Be sure to click on 'all dates' so you will get the most complete search.

If a phrase is written in bold type in a message, you can click on it to automatically get more information. Then press your back button to return to the text.

You may need a medical dictionary (you can find one online) for some of the papers but I hope you can get the basic idea of Trevor's description of sarcoidosis etiology and treatment. Let us know if you have any specific questions.

Sarcoidosis is rare but neurological symptoms from sarcoidosis are not. At any rate, the treatment is the same no matter what part of your body is affected. Many folks are getting better and you can too.

Meg
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-10-03 17:41

Leslie,
Body temperature is controlled by many things, but primarily the thyroids hormones. There is a thread here on SarcInfo which explains how your thyroid hormones get upset by the high levels of 1,25-D resulting from sarc inflammation.

..Trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: Alison-UK :) (---.bas.cvx.blueyonder.co.uk)
Date:   05-11-03 08:07

Greetings all

Still trying to read all the info....

I'm seeing a skin specialist tomorrow, for the first time, I'm currently on 10 mg methtrexate per week and 10 mg predisolone alternate days, I'm off to see this consultant as I have probable steroid acne... who knows?

I know that there will be a possibility that I could be prescribed antibiotics.

With the other drugs I'm on would starting the Minocin be worth while, or do I need to be off the methtrexate and predisolone.

And what dosage...

regards

alison
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-11-03 08:16

Alison,
You probably don't want to touch the other drugs likely to be prescribed for acne (eg Accutane), and in any case Minocycline is ALWAYS worth a try.

Thomas Brown's book says that he sometimes treated patients on 15mg prednisone, and you are well below that, so the pred probably won't get in the way. The MTX won't either - except that there are reports of Minocycline potentiating the effect of MTX - whatever that means. But if you are taking MTX your body's ability to form new cells and heal is reduced anyway - and there are increasing reports that MTX causes formation of inflammatory "nodules" - and that MTX destroys the liver of 10% to 20% of patients who have been on it a year. So you know what I am going to say about that drug

Anyway - Minocycline is ALWAYS worth it. As is Doxycycline. Even Tetracycline. Once you get the herxheimer you know it is working . That allows you to plan your future with a little more certainty... (ps: some folks never get herxheimer and still get fixed, its just that herx is a 100% sign of bugs...)

..Trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: Alison-UK :) (---.bas.cvx.blueyonder.co.uk)
Date:   05-11-03 10:28

Trevor

Thanks again for your speedy reply...

I will share the updates as they follow, and hope it is of use to others.

Many thanks

from Cosmic Woman - Alison.
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-11-03 13:33

Hayden Anderson,
Just about everything on this site is applicable to RA. Certainly a lot of the antibiotic therapy was derived from Dr Thomas Brown's book "The Road Back" and also a paper and emails from Dr Joe Mercola.

Take a look at this paper, where I give some references which document the same abnormal 1,25-D regulation in Dr Mawer's RA patients (and also in a German group). In most case not as bad as Sarcoidosis patients experience, but it is all a mtter of degree. I frequently list RA as the most common and least obvious, immune disease, through Crohn's and Lupus to Sarcodiosis (graded by dysfunctional 1,25-D synthesis).

But it is the same cause (CWD bacteria plus occasionally (maybe) viruses), as proven by the effectiveness of minocycline antibiotic therapy in tens of thousands of RA patients following Dr Brown's protocols...

The Angiotensin Receptor Blockade is our discovery (me and Liz) and should also be equally applicable to arthritic pain. Certainly it seems to go after all the pains of sarcoidosis.

..Trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: Hayden Andersen (---.lnh.md.webcache.rcn.net)
Date:   05-11-03 16:35

Trevor

Thank you very much for your comprehensive reply to my question
on the relationship between RA and Sarc.

I will go ahead and get the two tests to calculate the D ratio and
then consider the ARB therapy.

I think it is great that those of us with medical problems can come
to this website and learn from the experience of others.

Thanks again.

Hayden
 
 help my husband ***** Please Post General Questions Here *****
Author: Shelley (---.proxy.aol.com)
Date:   05-11-03 21:11

My Husband is 40yrs old and has had sarcoid for11yrs and he has also been on predisone for all of those 11yrs. recently his dr. tried to get him of off the steroids but 3 months later he started coughing , his calcium level rised and he had to have a treatment , and now he has this huge lump in his cheek that will not go away and is getting to be bothersome to him, every ask's me about his face and i try to explain . I am very worried and would like to know if anyone else has had this happen to them?
Thanks Shelley
 
 Re: ***** Please Post General Questions Here *****
Author: leslie (---.proxy.aol.com)
Date:   05-11-03 21:23

I am having Hot Ears! Has anyone else exerienced that?
 
 Re: ***** Please Post General Questions Here *****
Author: Denise (---.connect.com.au)
Date:   05-12-03 02:44

Leslie, yes I get hot ears - they go bright red.

I was going to ask a similar question to Hayden re the RA. A friend's wife had been having symptoms similar to mine for several years but the doctors could never find a thing wrong with her. I told my friend it sounded auto immune to me. Sure enough, she recently was diagnosed with Lupus. So a fair bit of the stuff with applies here applies to Lupus too! Do you think I should give her information off this site. I mentioned a few things to her husband.

Denise
 
 Re: ***** Please Post General Questions Here *****
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-12-03 07:21

Shelley,

The lump in your husband's cheek certainly could be due to sarcoidosis. I applaud the doctor's efforts to wean your husband off Prednisone. That means he recognizes its dangers and may be receptive to ordering Trevor's treatment that is safe and effective. Getting off steroids can be brutal as many posts on this message board will tell you but it can be done.

The first step your husband needs to take to get well is have his D-levels tested, eliminate Vitamin D and avoid sunlight/bright lights.

To give you a better understanding of the cause of sarcoidosis and how it can be put into remission, I hope you and your husband will spend some time reading the patient tutorials and physician papers at the top of the page, the links to articles at the bottom of the page and the topic messages (threads), especially those that are starred. Don't hesitate to ask about anything that puzzles you.

Print out the papers for physicians to take to his doctor. Many folks are gettng better and he can too.

Good luck,

Meg
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-13-03 07:07

Lisa Fierman wrote:
"I was diagnosed with pulmonary sarcoidosis in 2000 and for the past year have seen my condition stabalize. Only med I'm on is Pulmicort. I recently had a baby in April and had no problems during my pregnancy. Since last week I have been having "itching attacks" in my hands and feet, at times so bad that I start to cry. Since my C-section for my baby in April, I have also experience numbness and tingling sensations in my hands. My OB-GYN says it could be related to carpal tunnel. I see a Dr. annually at Drexel/Hahnneman university hospital who says that during pregnancy Sarcoidosis can go into remission, but afterwards it can come back worse than before. I am wondering if this itching is related to the sarcoid?

My family Dr. told me to take Benedryl for the itching, which is helping. But I am wondering if this new problem can be related to my sarcoidosis. During my attacks my fingertips get red and numb and the itching is unberable. it moves from my hands to my feet. Doesn't usually happen in both places at the same time.

Any info anyone has about this would be appreciated. Thanks."
 
 Re: ***** Please Post General Questions Here *****
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-13-03 11:45

Hi Lisa,

Welcome to SarcInfo. Your symptoms of itching and numbness certainly could be related to your sarcoidosis.

The easiest way to find out is to have your levels of D-metabolites measured. There is a tutorial on the subject at the top of this page. Sarcoidosis is caused by Cell Wall Deficient bacteria which trigger the abnormal immune system response. The result is inflammation and high levels of 1.25-D which cause many of our symptoms.

Your pregnancy may have exacerbated your sarcoidosis because 1.25-D is manufactured in the placenta. You can read more about it on the thread Sarc and Pregnancy

Please take some time to read the tutorials and papers for physicians at the top of the page so you will have a better understanding of what causes sarcoidosis and how you can put it into remission. This is the only way to alleviate the itching and numbness.

It's difficult enough recuperating from a C-section and taking care of a newborn without having to deal with sarcoidosis. Let us know if you have any more questions.

Good luck,

Meg
 
 Re: ***** Please Post General Questions Here *****
Author: Jan Lewis (---.lgeenergy.com)
Date:   05-13-03 12:11

I'm having an issue not sure how to address. About a month or 6 weeks ago, I took Bectra for about 3-4 days. During this time, I noticed I was gaining weight rapidly (around 8 lbs). So, I went off of it immediately. I was taking this in hopes it would reduce the inflammation in my sciatic nerve. Nonetheless, the weight has not disappeared. I feel swelled in the tummy area. I also have had a horrid kidney infection and have been on Cipro for about 9 days now. I've been getting recurrent kidney infections ever since I was diagnosed with Sarcoid. I had a kidney stone eradicated in January and still have a small one in my left kidney.

I went off Benicar last week or the week before due to the expense. Now, the pain in my liver area is returning. I also went off the Minocin while I was on the Cipro. Didn't think it wise to be taking two forms of antibiotics at the same time.

I absolutely hate to go back to the dr., but this swelling has me concerned. I've weighed exactly the same for 3 years.

To recap, my D-levels were A-ok last month, but the ACE was 98. However, it was down from a high of 120 last year and this past January's results were 106. So at least heading in the right direction. Has anyone else experienced this swelling? I never seem to be bothered with any herx episodes nor do I have any real issues with the sarcoid except the frequent kidney infections and the pain in my liver.

Thoughts?

Jan Lewis
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-13-03 12:24

Jan,
Cipro is an antibiotic that is heavily marketed as a "cure-all" to the doctors. We have a thread about it here on SarcInfo.

Yet it has a very high incidence of serious side effects. I am not talking herxheimer, I am talking muscle and tendon, and gastro-intestinal problems. Here is testimony about some of them.

A common (and safe) antibiotic for kidney infections is Bactrim, Sulfa/trimeth. Why not ask Doc about it? (also, get some repeats so you can take this with your minocycline when you restart that).

When you said "Bectra" did you mean "Bextra"? If so, it is a NSAID. I doubt it is directly responsible for weight gain, but it may have increased your appetite. Actually, it is probably going to be hard to get rid of weight until you get your sarc on the run. That is certainly what I found.

..Trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: DJ (---.tnt4.billings.mt.da.uu.net)
Date:   05-13-03 12:28

Hi Lisa!

I have Sarc and have had the same itching problems you describe. It was severe and migrated from hands to feet to arms, etc. Benedryl helped for immediate relief, but staying out of the sun for a few days and watching my Vitamin D intake finally got rid of it. As Meg mentioned, checking your 'D' levels is the way to find out - mine was high, and the sun makes it much worse.

Congratulations on your new baby!

DJ
 
 Re: ***** Please Post General Questions Here *****
Author: Jan Lewis (---.lgeenergy.com)
Date:   05-13-03 12:47

Sorry, yes I meant Bextra. One of the side effects listed at the FDA's site is "rapid weight gain." So, that's why I went off of it. It didn't increase my appetite at all. In fact, I try to eat very healthy. No sodas, little to any sugar. Oats for breakfast, fruit/nuts for snacks. The weight gain occurred before the Cipro so I don't think that's the reason. I have no problems taking Cipro, but Sulfa gives me horrid diarrhea. It's a mystery (this weight gain) for sure. It was just so sudden.

Jan Lewis
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-13-03 13:18

Jan,
Even though you have been told you have an allergy to "sulphur drugs" you really need to re-test Bactrim (Sulfa/Trimeth). Not all drugs with sulphur in their formulas do the same thing, and if you can't take Sulfa/Trimeth it reduces the available CWD antibiotics from 2 to 1. Which is not a very good thing. (OK, maybe from 3 to 2 if you count Clarithromycin, but Clarithromycin really isn't very effective compared to Sulfa/Trimeth and Minocycline).

Kidney stones are a sure sign of elevated 1,25-D levels.
Generally, folks are considered at risk of hypercalcemic effects (like kidneys stones) at 1,25-D levels above about 42 pg/ml.

..Trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: DJ (---.tnt4.billings.mt.da.uu.net)
Date:   05-13-03 13:35

Hi Jan!

I have no idea if this applies to your problem, but in the several months before the major symptom flare that led to my sarc diagnosis I had trouble with unnatural and unexplained weight gain. Not as rapid as yours - more like 4-5 lbs a month but it happened every month. The funny thing about it was that it all went to my middle and felt firmer than normal. I noticed that even before I knew I knew I had sarc. Now that my symptoms are improved (after a couple months of minocin) I have started slowly losing weight (from the tummy)- no change in eating habits that I am aware of (except no milk.)

Just got my new labs back and my thyroid seems to be working better now, maybe that is the connection. Who can tell with this wacky condition!

DJ
 
 Re: ***** Please Post General Questions Here *****
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-13-03 20:06

Hi Jan,

I hope you will be consulting your physician soon about your weight gain and swelling. It could be a sign of kidney malfunction related to your history of kidney problems and should be investigated.

Take good care,

Meg
 
 Re: ***** Please Post General Questions Here *****
Author: Lowelle Messner (---.73.183.174.dial1.chicago1.level3.net)
Date:   05-14-03 04:07

DJ,
I have been experiencing exactly the same thing! My belly and lower abdomen have been getting larger and larger, very hard, making it very difficult to bend over. In fact, I strained an oblique muscle, while trying to bend over to one side. It just popped. I have believed that it is related to the Sarc, too.

Since I just started on the Benicar yesterday and can't start the Minocycline for two weeks, I will continue to hope that this condition will go away with this therapy. I feel like a "pregnant", 50 yr. old woman! I eat well, do water aerobics 3-5 times per week, including sit-ups and still am losing the battle.

Trevor, have you heard of this happening with Sarc? How do you explain what is happening to us? I know that Sarc spreads throughout the body, but what is this?

Lowelle (keeping positive thoughts in Ohio!)
 
 Re: ***** Please Post General Questions Here *****
Author: Judy, Idaho (---.coldreams.com)
Date:   05-14-03 06:35

Hi Jan,
Sorry about the kidney problems, here is something I read in our local paper just yesterday.Someone wrote the doc Dr. Peter Gott M.D. about that problem and he states" Calcium stones are a common consequence of several diseases, including sarcoidosis (an inflammation of lymph glands and other tissues) hyperthyroidism, ect. "and then he states too much Vitamin D and some other causes. He said prevention consists of treatment for any underlying disease, a high fluid intake(more than a quart of water a day, to dilute the calcium in the urine) thiazide diuretics(water-eliminating pills that lower urinary calcium). and the articles goes on.
I found this article very interesting.
Have a good day, and I will cheer you with a glass of water....hee,hee I started to increase my water intake alot yesterday after I read this....I also use a slice of fresh lemon in the water and that helps me. I am not thursty very much I have to force myself to drink..
Good Health,
Judy
ps. I have surgery on the cyst on my wrist on Monday the doc said it will only get bigger....I am not really looking forward to this but I can deal sarc has taught me that........
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-14-03 06:50

Judy,
As most Sarc patients' kidneys are already less-than-perfect by the time they find SarcInfo, I generally discourage thoughts about thiazide diuretics. Extra fluid is the way to go (weak Jasmine tea is my secret (with Splenda))...

Please try and get Doc to prescribe the ARBs this time. I find it hard to reconcile Doc's acceptance of the necessity for cyst surgery, with his failure to give you the tools (ARBs) to help you get up to a sufficient dose of antibiotic and really start knocking down your inflammation. Also, please ask him why you can't get Minocycline instead of Doxycycline...

Anyway - good luck, and tell Doc to be careful with that knife... (and NO epinephrine)

..Trevor..
ps: my comments may be out of date or incorrect - it is hard to keep track of everybody these days - if you already have ARBs or Minocycline I apologize to you and Doc...
 
 Re: ***** Please Post General Questions Here *****
Author: lindam (---.as0.wtma.wi.voyager.net)
Date:   05-14-03 07:21

Just wondering if anyone out there would recommend a SARC Dr in Central Wisconsin. (Madison, Milwaukee, Appleton, St Point) or anywhere in between. I don't want to educate the one I have with my new findings.

Thanks.
 
 Re: ***** Please Post General Questions Here *****
Author: Jan Lewis (---.lgeenergy.com)
Date:   05-14-03 09:16

Thanks for all of your comments. Meg, I, too, am concerned about kidney function. Trevor, I can take Bactrim, D.S. and have a huge bottle of it and lots of refills. I just can't take "Sulfa". I periodically take 2 Minocin with 1 Bactrim one hour later. I returned to taking the Minocin today since my Cipro treatment is over. Remember, my D levels were 25.6 (1,25) and 10.4 (25D) in March. So they appear normal now. Had an MRI of my spine recently and the clinic also did an MRI of my kidneys since I had written down I had stones. There is one stone still in left kidney, but the right one is ok. I have started exercising nearly everyday so am hopeful some of this is muscle, but the puffiness in my belly is of great concern. My mom indicated that swelling in legs and ankles indicated kidney issues (at least that's what she thought). I'm going to look this up on net.

Thanks for input.

Jan Lewis
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-14-03 09:24

Jan,
If it is kidney-related, Jan, you are in luck. The FDA recently approved Avapro for treatment of nephropathy, and there is no reason that any of the other ARBs would not be equally effective. In fact, Canada just approved Losartan (the oldest of the ARBS) to halt nephropathy, and if Losartan can do it, is a good bet that any of the more modern ARBs will do it better

..Trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: Jan Lewis (---.lgeenergy.com)
Date:   05-14-03 09:37

Sorry...didn't quite get this one. Are you saying that Benicar would be helpful since it's an ARB or Avapro would work in place of Benicar and still be effective for the sarc? I went back on Benicar yesterday. STILL waiting to hear from insurance company re: the appeal. It's now been 4 months and nothing from them. I have my own rep with the insurance company and she doesn't even return my calls. Frustrating at best.

Jan Lewis
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-14-03 09:46

Jan,
Benicar, Avapro, Diovan, Losartan all have the same (basic) biochemical action, and should all be similarly effective against nephropathy. If Benicar works a little bit better on your sarc symptoms it can be expected to also work a little bit better on the nephropathy.

..trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: Judy, Idaho (---.coldreams.com)
Date:   05-14-03 09:49

Trevor,
Thanks,You are on target I don't have any ARB's yet but I have worked up to 100mg. of the doxyc qod and still have some herx(but I can live with that I feel so much better except the bottom of my feet ouch!). I thought that I would use the doxyc up and then ask for the Minocycline, I have alot of the doxyc. He isn't the same doctor that feels I need the cyst removed, he wanted me to have it checked as it was getting larger and the hand specialist he sent me to feels that it needs to be done.
Do you think that it will be a problem to finish on the doxyc or should I change over now? What will if any, will the change over be like since they are in the same family of drugs? I suppose it won't be a problem. I do know I feel better but it has been a uphill battle without the ARB's, he just isn't real comfortable with them yet IMO for whatever the reason.
Thanks,
Judy
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-14-03 10:01

Judy,
Not comfortable? Hmmm..
Professor Evelin Lindner MD, Dr Med, Dr Psychol, who teaches at Oslo, Trondheim and Columbia (NY) Universities, wrote of Benicar therapy for her sarcoidosis
"After 20 years of severe symptoms, I experience relief for the first time. Angiotensin Receptor Blockade has noticeably reduced my pain"

See if Doc will feel better with someone like that to lean upon...

..Trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: Judy, Idaho (---.coldreams.com)
Date:   05-14-03 10:25

Thanks Trevor I printed that off and will take it in.
Thanks again,
Judy
Did I understand you right ,Jasmine tea is a diuretic? That would be great for me as I seem to retain alot of fluid....I am also on HRT so that accounts for alot of that.
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-14-03 10:40

No, Jasmine Green Tea just gives a little flavor to the hot water, that's all. It doesn't interact with any medicines you are taking, either. I use it VERY WEAK, maybe jigging the bag in microwaved hot water for 10-15 seconds before filling the cup with cool water and throwing out the teabag. Splenda makes it taste nice....

..Trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: Judy, Idaho (---.coldreams.com)
Date:   05-14-03 11:23

Trevor,
I have one more question, is the reason for "no epinephrine" is because it doesn't allow a sarc patient to numb up right? I wasn't sure I got that right????????
Thanks , I so appreicate this site as it allows me to educate myself on so much. I also am reading Dr. Brown's book "The Road Back" took a time to get my inter-library loan and I will tell my library to order one so we have it here in town(I use to work there for many years so I have a "inside" so to speak, hee hee) .
Thanks!!!!!
Judy
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-14-03 11:32

Judy,
Er, yes, I suppose "numb up right" just about describes the problem

It also causes edema, localized to the injection site. The edema is usually visible to the naked eye, even in dental anesthesia.

..Trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-14-03 15:10

Jan,

I noted that you said you can't take sulfa but you are taking Bactim DS. Bactrim DS (double strength) is a combination of two medications: trimethoprim 160mg and sulfamethoxazole 800mg.

As you can see Bactrim contains a sulfonamide so you have been taking what you thought you couldn't take. Did you have previous reactions to a sulfa drug? This is quite common among sarc patients and is due to a Herxheimer reaction rather than an allergy.

Meg
 
 Re: ***** Please Post General Questions Here *****
Author: Lowelle Messner (---.73.183.249.dial1.chicago1.level3.net)
Date:   05-15-03 09:51

FYI,
I went to the natural food store and spoke with the owner about the best way to get good "flora and fauna" back into my gut.

Primodolphulus was always the product that I had bought, in the past.

I didn't realize that it only contains 2 strains of the good bacteria, plus has to be refrigerated. The owner suggested something called PB8, which is freeze dried (no refrigeration required) and contains 8 strains of the good stuff.

I started the PB8, twice daily, when I started on the Benicar (2 days ago). In an earlier post, I had complained of having an extremely hard and swollen stomach and abdominals. After 2 days of these products, the swelling is greatly reduced, as is the hardness. Yea! I'm hoping to get my gut in better shape before I start the Minocycline.

The owner of the health food store said that there is a product that contains 12 strains. Do you think that 8 is enough? How many strains are in the products that you take?

Lowelle
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-15-03 09:59

Lowelle,
The Benicar should lower your 1,25-D
That should help reduce your abdominal swelling. It usually does. Wait a few days before you spend any more money in the health food store.

..Trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: Vickie (---.gci.net)
Date:   05-15-03 10:46

Hey Lowelle,

PB8 is a good product, although I'm somewhat suspicious of products that don't have to be refrigerated, you know? ;o) The kind I use is Jarro-Dophilus; it's got six strains including L. Rhamnosus, a friendly bacteria especially good for... TMI alert.... anal pruritis (aka "butt itch") which is how the candida from the doxycycline affects me. The other reason I get this product is that it's supposed to be able to survive stomach acid -- an important issue because if the bugs are dead before they make it to your intestines, they're not much good.

I also have a liquid acidophilus product that I use. I started the Zone diet last week (have lost five pounds so far) and my breakfast is a fruit smoothie. It's really easy to put the liquid stuff in my smoothie, mix it into cooked oatmeal, etc.

I'd love to hear the name of the product with 12 strains. Next time you go, could you get the name of it for me? Thanks a bunch.

Take care. Hope your tummy still feels better.

Vickie
 
 Re: ***** Please Post General Questions Here *****
Author: steve (---.cache.esat.net)
Date:   05-15-03 11:04

hi could you please tell me if it safe to take tetracycline antybiotic as i have an eye problem i have been put on them for 3 months allthough it is a low dose i would like to know if it will affect my sarc in any way as i have allready been to hospital with elevated calcium levels
thank you steve
 
 Re: ***** Please Post General Questions Here *****
Author: Judy, Idaho (---.coldreams.com)
Date:   05-15-03 18:07

Trevor or Meg,
I read the thread on taking Cipro, are there any other antibiotics that a sarc person should be careful with besides the Cipro? I didn't get it I guess does Cipro cause you to have problems with your muscles? When I have the cyst done they told me today he will put me on some antibiotics .They know I am on the doxycycline so I was checking myself as to the different drugs that cause other problems.....the doc that will do the surgery is very interested in this treatment so that is cool, I told them about the epinephrine too. You know this just dawned on me I carry a EPI pin cause I have allergies hope I never need to use it......
Thanks for your time,
Judy
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-15-03 18:38

Judy,
There are certain side-effects of drugs that I can identify as being something I have had to suffer through. Those I am prepared to give the benefit of the doubt as "herx".

But when an antibiotic makes muscle tear away from the bone, that is something quite different, IMO. I warn about the statins for the same reason - really strange stuff being reported. Both families of drugs are potentiated by the common drugs that sarc patients are on (eg prednisone)

Having said that, Cipro is pretty widely used. Hospitals often use a different flouroquinolone, one that doesn't have so many reported adverse effects. But you know, why do we always go for wide spectrum antibiotics? - heck if I know.

Doctors refuse to treat sarc patients with minocycline because of some fear of adverse reactions, but these new antibiotics, which are heavily promoted by the drug companies, are widely prescribed (unfortunately they will not kill your CWD bacteria).

So ask Doc for some older antibiotics to complement the Minocycline (which is pretty "wide spectrum" anyway). We know more about them. Dr Cunha keeps exhorting his hospitals to do just that.

..Trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-15-03 21:35

Hi Steve,

Tetracycline is one of the antibiotics that will kill the Cell Wall Deficient Bacteria that cause sarcoidosis. Tetracycline may help your sarcoidosis symptoms and is safe to take but minocycline, a member of the tetracycline family, is more effective. Read the dosing tutorial on minocycline to find the most effective way to admiinister it.

If your calcium levels are high, it is important to determine your level of 1,25-D. It may be the source of your hypercalcemia. And if can be quickly reduced with an Angiotensin Receptor Blocker.

Have you discussed the ARB and Minocycline treatment with your opthamologist?

Meg
 
 Re: ***** Please Post General Questions Here *****
Author: Denise (---.connect.com.au)
Date:   05-16-03 00:58

Hi,

A couple of questions.

I am taking Isoptin for migraine prophylaxis. My doctor says it Avapro shouldn't interact, it didn't flag it on the computer. It is set up so that the doctor can't prescribe something that will interact with what the patient is already on. Do you think it is safe to take Avapro? The doctor put me on two Isoptin and I got too dizzy and had to go back to 1. I am a little worried Avapro might do the same.

Second, a friend whom I suspected had a similar condition to sarc has recently been diagnosed with Lupus after suffering for many years without docs knowing her problem. How much info from this site would be useful to her. I have already told them about CWDs and minocine and to keep out of the sun.


I did feel better on the Minocin. Since coming off it I have had losses of 800g and 1.5 kg. While on it I was not having losses at all, putting on weight around .5 kg or having minute losses of under .5 kg. I do think antibiotics slow weightloss, at least for me. I only have 7 kg to reach goal so I don't want to mess about just now.
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-16-03 06:09

Denise,
At the level of the immune reaction, Lupus is an identical process to sarcoidosis, a Th1 immune respose which the body mounts to bacterial invasion. Everything on this website (concerning treatment) is totally applicable to Lupus patients.

The ARBs, including Avapro do not interact with any other drugs. However, Calcium channel blockers (Isoptin) are a strange drug to give a sarc patient for migraine prophylaxis, as the calcium metabolism in sarc is not usually something you should mess with, IMO. Beta blockers seem OK. But ARBs are what you really need. Every 6-8 hours.

The CWD microbes take months to kill. Some reports have said it will take years to fully eliminate them from your tissues. Minocycline is a drug you will need to use, either in regular intermittent treatment courses, or in continuous 'maintenance' dose. See the Minocycline Dosing Issues paper for more info. I am surprised that you have stopped taking it at this point...

..Trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-16-03 06:47

Denise,

Since both Isoptin and Avapro lower blood pressure and you got dizzy at a higher dose of Isoptin, taking both of them may be too much for you. Has the Isoptin been effective for migraine prophylaxis? If you are considering taking the Avapro because you are still having migraines, there's not much point in continuing the Isoptin, IMO. Avapro alone may do the trick and at high enough doses provide you with an inflammatory blockage for your sarcoidosis.

I'm not sure why the minocycline would have made it difficult for you to lose weight. Perhaps it won't have that effect the second around. You may have to consider the comparative health benefits of resuming the minocycline to put your sarcoidosis into remission with the benefits of weight loss.

Good luck to you,

Meg
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-16-03 07:01

Meg and Denise,
I found that the temporary surge in 1,25-D resulting from herxheimer (at some stages of the therapy) caused sleep pattern disturbance and over-eating. More frequent doses of Benicar got me through those days..

..trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: Debbie (---.rtp.epa.gov)
Date:   05-16-03 08:08

This website has given me a glimmer of hope.

If I have it right, then this is the summary of the articles on your website. They recommend the following treatment:

- Taper off prednisone.
- Ascertain levels of 1,25-dihydroxyvitamin D (1,25-D), 25-hydroxyvitamin D (25-D), ACE, serum Calcium, Alkaline Phosphatase.
- Good values for vitamin D are: 1,25-D < 30 & 25-D around 10-12.
- Compute D-ratio as 1,25-D divided by 25-D. A value of 1.5 is good. Higher indicates active inflammation.
- Start Benicar as an angiotensin receptor blockade (ARB) at 40mg 3xday so when the immune system reacts to the endotoxins, the surge in 1,25-D won't be so uncomfortable.
- After one week, start Minocin at 50mg progressing to 200mg M.W.F as tolerated.
- When Minocin 200mg no longer does the trick, add Bactrim DS.
- Monitor blood levels every three months.

After months on prednisone, tapering down caused worsening Sarcoidosis symptoms but the prednisone side effects were awful. I am now off it. My doctor is great. He is willing to try the antibiotic treatment. I go on Monday to get the prescription. But I want to make sure I have it right.

I had the blood tests done when I was down to 15mg of prednisone. The results are:

Vitamin D 1,25-Dihydroxy 55 pg/mL
Vitamin D 25-Hydroxy 33 ng/mL
ACE 12 IU/L

That makes my D-ratio 1.66

What do you think of these numbers? Is the treatment summary correct?

Thanks!
.. Debbie
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-16-03 08:27

Debbie,
A good 1,25-D target is 20-25 pg/ml, with a D-Ratio of 1 to 1.5

Your 25-D indicates quite a high intake of Vit D for a sarc patient, you could get it down around 10-12 ng/ml and feel a lot more comfortable. Take another look at those foods and supplements...

Your ACE was low because of the prednisone, most likely, I would expect it to pop up now.

A 1,25-D of 55 pg/ml shows that your kidneys have lost the ability to control it within the normal range (29 pg/ml with sigma of 9). This is almost invariably caused by active, well-perfused, inflammation. So your treatment path is correct, IMO.
Congratulations on having a good doc. Keep in touch as you progress.

..Trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: lindam (---.as0.wtma.wi.voyager.net)
Date:   05-16-03 09:57

I'm new to your site and after reading up on your recommendations I wrote to my Doctor, (a lung specialist), and asked for the blood work. I told him my goal was to be off of prednisone and to get on the antibiotics you recommended. His answer was that he would not order the tests because he "feels strongly" that antibiotics are not the way to go. HELP! Could someone please recommend a doctor in Wisconsin that they know is already educated in this treatment.
 
 Re: ***** Please Post General Questions Here *****
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-16-03 10:16

Lindam,

I live in Wisconsin. and I doubt you will find a doctor who is already educated in this protocol. It is just too new. You will have to do the educating. I know of 2 Wisconsin doctors who have orderd the blood tests and I'll be happy to send you their names if you want to try to contact them.

Don't be discouraged. A lot of us have had to approach more than one doctor before we got the help we need.

Meg
 
 Re: ***** Please Post General Questions Here *****
Author: Diana (---.cache.pol.co.uk)
Date:   05-17-03 03:14

I read with interest that epinephine does not always work as a local anaesthetic. I wonder if that is why they failed to give me a lumbar puncture 24 years ago. The pain and violent spasm resulting from the needle meant it was not safe to proceed.

In the guidance notes for my bronchoscopy on Tuesday, it says that I will be given a local anaesthetic spray to numb the back of my nose and throat. Is there a chance that this will involve epinephine? They are certainly used to dealing with sarc patients, but could this be a problem?

Diana
 
 Re: ***** Please Post General Questions Here *****
Author: peggy (---.tnt1.belvidere.il.da.uu.net)
Date:   05-17-03 06:06

Trevor and Meg-
Had a visit with my Family Practice Doctor on Thursday. I had dropped off literature explaining Trevor's protocol earlier along with a note explaining what I wanted to talk to him about on Thursday. My husband came with me (helps cause he is in the medical profession). I explained to him that I had been to a local pulmonologist who put me on prednisone. We had also visited "Sarc expert" in the midwest last week that was totally adverse to prednisone but recommended methotrexate. I told him that I was weaning off the prednisone because I hated how I felt on the drug and that after reading about the side affects and questionable recovery rates of sarc patients there was no way I was staying on the drug. I refused to even consider methotrexate (my brother-in-law is on it for rheumotoid arthritis and has been told he has the liver of a moderate alcoholic!)

My doctor was willing to work with us. Questioned the dosage of Benicar but as long as we monitored my blood pressure he would go along with it. He was familiar with ARB therapy. I think he initially felt that since my primary symptoms were lung related this should be treated by the pulmonologist. When we talked about sarc being a multi-systemic disease that needed general oversight that seemed to help.

So, I had blood work done that day along with a baseline chest xray. I see him for quick visit in one month. We are going to monitor this about every three months with blood work initially.

I think that the article from the CDC stating that bacteria caused Sarc was important.

Family Practice of GP docs feel uneasy because this initially appears to be way beyond what they treat. But when there is an understanding that someone needs to act as "overseer" of the entire body there seems to be more acceptance.

Have started the Benicar and feel fine. Those digital blood pressuer cuffs are so easy to use. Keeping a journal.

Thanks again for all your help and suggestions. I'll let you know when I get my blood work back.

Peggy
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-17-03 07:34

Diana,
Yes, tell Doc abaout the failure of local anesthesia in your earlier operation (it sounds just like my aborted drill-biopsy) and ask him/her to make sure there is no epinephrine in the formulation of the local. The anesthetic works perfectly well without epinephrine.

..Trevor..
ps: Your dentist should also use injections without epinephrine.
 
 Re: ***** Please Post General Questions Here *****
Author: Christian (---.ipt.aol.com)
Date:   05-17-03 10:43

Trevor,
Earlier in this thread Debbie said:

"- Start Benicar as an angiotensin receptor blockade (ARB) at 40mg 3xday so when the immune system reacts to the endotoxins, the surge in 1,25-D won't be so uncomfortable.
- After one week, start Minocin at 50mg progressing to 200mg M.W.F as tolerated."

I want to know if taking Minocin Monday-Wednesday-Friday equals taking it every other day in terms of bioavailability and speed of recovery. I think The Road Back foundation is suggesting also M-W-F. Are you suggesting we should take the week-end off also? I want to know because at the end of next week, I'll be at my second week of installing an ARBs blockade and will start with the antibiotic.

Christian
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-17-03 11:01

Christian,
Dr Thomas Brown used the M-W-F protocol. It is easier to remember, and leaves Sundays relatively free of herx.

The bugs grow so slowly that there is no real difference between 2 or 3 day protocols, IMO. I often used 2 day, and slip to 3 (or 4) day if I had important events I didn't want to feel 'herxy' at. Or if I was going through a period of bad herx.

The key thing is to let the antibiotic clear your system, and to let the 1,25-D clear your tissues. The ARB facilitates the 1,25-D tissue clearance (by minimizing the paracrine concentrations).

..Trevor..
ps: you can take a week off, if you need to, for a holiday, or similar... or just drop back (temporarily) to a dose which doesnt give as much herx.
 
 Re: ***** Please Post General Questions Here *****
Author: Christian (---.ipt.aol.com)
Date:   05-17-03 12:49

Trevor,

Thank you for you reply. I have some more questions for you. I already have my Minocin, Lederle brand, 50mg. I'm thinking of having (if all goes well)1 week at 50 mg, then move to 100 mg the second week, 150 the third week and finally 200 mg on the fourth week. Does it seem like a good plan?

The pharmacist put little stickers on the container indicating that I have to drink plenty of water while under treatment, have to take medication with food and also avoid sunlight.

Do you take it with food? I don't know why but I'm under the impression that you're only having weak tea with it. Does food lower the amount metabolized?

I would like to understand the science behind this increased sun sensitivity. Do you think that this kind of side effect could be a manifestation of some Vitamin D metabolism disorder?

Why drink plenty of water? Diahrea is a side effect, wouldn't water increase the problem?

Christian
 
 Re: ***** Please Post General Questions Here *****
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-17-03 13:22

Christian,

It is safe to take Minocn (minocycline) on an empty stomach. In fact, if you do, you may have better absorption. You should definitely take it 2 hrs before or after laxative or iron products; 3 hrs after antacid or kaolin-pectin products to avoid interference with absorption.

You may take it with food but you don't have to unless it causes gastric upset. It will simply slow the rate of absorption but the same amount should be metabolized.

Trevor's protocol calls for taking it with weak tea to promote rapid absorption from the GI tract to get the dose into your bloodstream quickly so it will hit those bugs all at once. The pharmacists recommendation to drink plenty of water is because minocycline has an infrequent side effect of nephrotoxicity and the water dilutes its effects on the kidneys.

You should not expect diarrhea but it is a side effect. Diarrhera with antibiotic use is often caused by an overgrowth of yeast as the antibiotic kills the friendly bacteria in your gut. If you are prone to this, you will want ot take probiotics every day or on the off days to replace the normal fora of your intestines. There is lots of info on this site about the various products for this purpose.

Tetracyclines (minocycline) makes everyone photosensitive. Perhaps Trevor can explain why. Your plan for increasing the dosage gradually sounds very sensible. You can always alter it as you go along.

Take care,

Meg
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-17-03 13:30

Meg,
Another reason for taking doxy/minocycline with lots of water is that if it gets stuck in the esophagus it can cause really bad stuff - perforation, in fact. So it is best to get it right down. I chew a few nuts after the capsules and before I start to sip my tea just to make sure the capsules get down to the stomach.

The pigmentation is something about which little is known. Minocycline has been reported to turn thyroid tissues (harmlessly) black, so I suspect it is some wierd form of herx - I just don't know. I certainly have had no problems from it ( I just wiiiish it would also give me a tan )

..Trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: Christian (---.ipt.aol.com)
Date:   05-17-03 13:47

Trevor and Meg,

Thank you very much for your comments and advice. There is something else I was wondering. Let's say that I want a 25 mg increase of my dosage, can I obtain this dosage by emptying and disolving the content of a 50 mg capsule in a liquid and drink half of the glass?


Christian
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-17-03 13:51

Christian,
A doubling of the dosage is probably the smallest increment you will detect.
Yes, you can empty out part of the capsule. It is homogenous. Mainly useful for getting very low dosages

..Trevor..
 
 Constant Sinus Drainage
Author: Rick (---.ia3.marketscore.com)
Date:   05-17-03 20:29

Hi Trevor,

Well, it's now been 9 weeks on Minocin and 7 weeks on Benicar and up and down I go . . . Mostly still getting heavy facial flushing and fatigue.

Anyway, I was reading The Road Back and zeroed in on something which I need some help on . . . Focal Infections, specifically sinuses-allergies . . .
I have always had "post nasal drip" since childhood and since this 2nd episode started in October 2002 it hasn't stopped. I have tried Flonase, Nasanex, Actifed, Sudifed etc., without any results.

The question is - how does one check sinuses for antigens?

I don't get sick very often, however, ear, nose and throat infections have always been a major problem whenever I am sick . . . . so, that's where the bacteria wind up. And, somehow after all these years it ended up in my lung, probably because none of the meds ever really killed the bugs.(?)

Any thoughts?

Rick
 
 Re: Constant Sinus Drainage
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-17-03 22:13

Hi Rick,

Trevor's been busy so I hope you don't mind if I take a crack at your question. Lots of sarc folks have sinus problems and you can read more about it on this thread

You should avoid the nasal sprays with steroids though. Steroids, no matter how they're delivered, adversely affect the immune system. It's not surprising that none of these sprays were effective if you have sarcoidosis involvement of the sinuses.

I don't believe it is possible to check the sinuses for antigens nor is it necessary. The CWD bacteria are most likely hiding there and they are the antigens which are triggering your abnormal immune system reaction.

You are already taking the most effective antibiotic but many of us have found that the addition of Bactrim DS helps these mucous membrane-type areas. If you can tolerate 200mg of Minocin every other day, it may be time to add a Bactrim DS tablet about an hour after each dose of Minocin for a couple weeks. This combination has proven to increase Herxheimer reactions nicely and cleared up lots of noses, eyes and ears.

Good luck,

Meg
 
 Re: ***** Please Post General Questions Here *****
Author: Rick (---.or4.marketscore.com)
Date:   05-18-03 08:20

Hi Meg,

I was under the impression that I had to wait for there to be no little to no herx on the present meds before adding the Bactrim . . . Or is it a matter of tolerance?

Rick
 
 Re: ***** Please Post General Questions Here *****
Author: Vickie (---.gci.net)
Date:   05-18-03 10:00

Hey guys,

I had a comment and a question. Seems like I read in my drug book that taking doxy/mino/tetra with milk products will also slow absorption; I take mine with my thyroid medication, which also is optimally taken on an empty stomach (or at least not taken with calcium or magnesium). I knock mine back at bedtime with a big glass of water; one time, though, I took it in the morning on an empty stomach and had the WORST gastric distress. Apparently I manage to sleep through mine when I take it at night.

Question, though, about the pigmentation issue you were talking about. I missed the original comment but I wanted to ask: does doxy cause skin discoloration? Because I've had the weirdest brownish chloasma (almost like a pregnancy mask) since I started the drug. It comes and goes and is really annoying. I did ask the pharmacist who said it had nothing to do with any of my meds. I thought she was blowing me off, though.

Is it the drugs then?

Hope everybody's doing well,

Vickie
 
 Re: ***** Please Post General Questions Here *****
Author: Alex (---.myeastern.com)
Date:   05-18-03 10:05

Re: A couple of questions
Author: Alex (---.myeastern.com)
Date: 05-18-03 10:03

I was diagnosed with sarcoid last February and have found that pain in my right lung is occasionally quite severe - almost causing me to double over in pain. When I was diagnosed, prior to me finding this site and realizing all of the potential nasty side effects with prednisone - I took about a 3 month therapy of prednisone. After that my CT Scans were coming back significantly improved - however this occasional pain still persists. My pulmonary doctor says he's never heard of pain being associated with this kind of thing.

I guess my question is - does anyone else get stabbing type pains. Or might there be another problem that I should investigate. Perhaps it's scarring from the biopsy.

I'm just confused. Every over the counter pain meds don't touch this pain and I don't want to be consistently on stronger pain killers for a variety of reasons.

Anyone have any ideas or suggestions?

Thanks

Alex
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-18-03 10:15

Alex,
About 10 years ago I had sudden excruciating pain in my chest area. Went to ER, they were hopeless. Eventually my internist noticed that the Xray showed that the diaphragm was an inverted v-shape at the bottom of the right lung. Diagnosed that my 10 year-old biopsy scar had adhered to the diaphragm - which was giving the most severe pain. In this case I just stayed on Vicodin for a week and it cleared up. It never came back. I am not suggesting yours is the same, but you need to keep a good watch on Xrays for this type of thing.

In your case the long-term nature of the pain is worrying. As I have said time and time again, an internal medicine specialist is a better match to the needs of a Sarcoid patient than a pulmonologist. This is a systemic disease, and it need to be treated by someone who is looking at the bigger picture.

..Trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: Wanda (---.carolina.rr.com)
Date:   05-18-03 13:10


1) Is there a website that gives information on the states in this country
with the highest and lowest number of sarcodosis cases?

2) Can sarc patients donate blood?

3) Is it important for these patients to get flu shots every year and a pneumonia shot every 5-10 years?
 
 Re: ***** Please Post General Questions Here *****
Author: Sheila S (---.gci.net)
Date:   05-18-03 15:34

These questions are for anyone willing to answer.
I have been on the doxycycline now for about four weeks and feel better most of the time, but do notice that on some days I feel totally drained and I have had a twitch around my right eye (off and on) not all the time but annoying just the same. Other days I am on top of the world and could do everything I planned for the whole week that day. I have read that as the bugs die that it is common to feel worse. I suppose that I assumed that it would be much worse. What kinds of affects should I expect? I am not eating anything with Vit D and I am trying to stay out of the sun. I also subscribe to natural healing methods such as massage, breathing and meditation techniques as well as lymph drainage, which can be very tiring but soothing. Is it, in your opinion possible for the lymph drainage to be very beneficial to help the body continue to dump the waste of the bugs and other junk. I just thought that since inflammation of the lymph system can also cause the body to be weak monthly drainage could help that system dump the trash (so to speak).

I appreciate any and all comments.
Thanks
Sheila
 
 Re: ***** Please Post General Questions Here *****
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-18-03 15:46

Hi Wanda,

Nice to hear from you again. I hope that you are feeling better. I'll try to answer your questions.

!) I have not seen one. Is there a particular reason why you are interested in this data?

2) No, the Red Cross does not allow blood to be given by sarcoidosis patients.

3) Sarcoidosis patients should avoid anything that would stimulate the immune system because of its predisposition to respond abnormally. That includes flu and pneumonia vaccines. Before I was diagnosed, I accepted these vaccinations as part of my job. I did not experience a reaction from either the flu, pneumonia or hepatitis B shots. But I did react with severe body aches following the DPT (diptheria, pertussis, tetanus) vaccination. I don't plan to allow any more foreign substances into my body unless there is a clear, immediate need. For example, the tetanus vaccination can be given following potential exposure to the organism only, in lieu of automatic vaccination every 10 yrs. It is combined with the other 2 vaccines for convenience and I'm not sure if it is available alone. I haven't checked with my local Public Health since my vaccination should be good until 2010. Does anyone know?

Take care,

Meg
 
 Re: ***** Please Post General Questions Here *****
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   05-18-03 16:58

Sheila,

Your experience of feeling good on some days and totally fatigued, with eye twitches, on others sounds like a mild Herxheimer response. Trevor pointed out in the "dosing issue" paper, minocycline is more effective against cell wall deficient bacteria -- and it causes more of a Herxheimer response.

I use hands-on lymphatic techniques to quell any chest discomfort and wheeziness I get as a result of the Herxheimer response. These therapies help keep the lymphatic system moving and stop any feeling of engorgement in my chest. I can often see almost immediate effects in a reduction in the size of of my face, abdomen and ankles after these treatments. As you have pointed out, they probably help the lymphatic system operate more efficiently to kill the bugs, so the benefits have a longer term.

Belinda
 
 Re: ***** Please Post General Questions Here *****
Author: Alex (---.myeastern.com)
Date:   05-18-03 17:03

Trevor,

Thanks for the advice. For now I've got a circle (?) CT Scan scheduled with my pulmonologist and I think I will look for an internal medicine doctor. The pulmonologist want to rule out an embolism (which he thinks is an unlikely thing). The pain that I have is normally about an inch under my right nipple and doesn't seem to change with breathing. Could a scar from my biopsy be that deep inside?

I've handed some of the information from this site to my primary care physician as well as my pulmonologist, but they all seem to shun this information as if it were "quack" internet garbage. Even my girlfriend who is a OB-GYN says that a lot of this information doesn't have that much scientific backing. Seems to me that sarc patients might not be the easiest group to scientifically study. Anyhow I want to get better and not having pain that would make me want to leap off a building is the first step.

How do you find a doctor that is willing to run these tests without having to commit all of you time to it. Does anyone have any doctor ideas in CT or RI?

Would appreciate any and all input. Wish all reading this site well.

Alex
 
 Re: ***** Please Post General Questions Here *****
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   05-18-03 17:10

Wanda,

Sarcoidosis is not a "reportable disease" in the United States, so there is no health system that tracks the number of cases. In addition to that, cases of sarcoid are often misdiagnosed and chronic cases (previously diagnosed) are sometimes later denied acknowledgement when doctors believe the disease "burns out" in a couple of years. All that leads to guesstimates of the prevelancy of sarcoidosis that may be an underestimation.

The Centers for Disease Control tracks only mortality rates (by state) for sarcoidosis (as well as lung cancer), but those figures are also controversial, and they only go through 1993.

Belinda

 
 Re: ***** Please Post General Questions Here *****
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-18-03 17:34

Alex,

Isn't it frustrating when medical personnel don't have enough time or interest to read new medical information no matter what the source? The Internet is proving to be the 21st century answer to timely, accurate, fast dissemination of cutting-edge data. Of course, you have to be a discerning reader but that is true of any source of information, including medical journals. (The British Journal of Medicine just published a highly criticized study about second-hand tobacco smoke.)

You might tell your girlfriend that there is far more scientific backing for the protocol explained on this site than there is for the ineffective,standard sarcoidosis treatments of steroids, chemotherapy and immunosuppressants. All she has to do is read the vast amount of information here.

Many of us have had difficulty finding a supportive physician but it can be done. There are 96 messages on this thread How To Find A Doctor Open To New Research to help you get started.

Good luck,

Meg Mangin, RN
 
 Re: ***** Please Post General Questions Here *****
Author: Delma (---.in-addr.btopenworld.com)
Date:   05-19-03 07:32

Hi Trevor

I'm finally back with my vit-D results. the 25-D result was 36 which the last time you said to divide by 2.5 for it to conform to the tests you are doing. I received my 1,25-D yesterday and it is 129. do I divide this by 2.5 as well to get my d-ratio?

I've been on minocycline for 2 weeks now and am feeling rotten. I'm very dizzy, lightheaded, TIRED, feverish and just generally feeling like I've got the flu coming on. My doctor has prescribed an ARB but was waiting to get the 1.25-D results before taking it.

What do you think I should do now?

I'm still very much in favour of everything you are doing and am NOT going to give up on these antibiotics. I just wish I didn't feel so rotten. I didn't take them this weekend as I was flying to London and wanted to feel better.

Thanking you in advance.

Delma
 
 Re: ***** Please Post General Questions Here *****
Author: Delma (---.in-addr.btopenworld.com)
Date:   05-19-03 07:36

HI Trevor

I forgot to mention that I'm taking 200mg of minocycline every other day. I'm also taking 13mg of prednisone every other too. Obviously, I'm taking this medication on opposite days.

Hopefully, this helps understand my situation.

Thank you

Delma
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-19-03 07:39

Delma,
The conversion factor for 1,25-D is 2.6 (from metric to US units) so that makes your 1,25-D 49.6, twice what it should be, and above Merck's recomended maximum value, and so it is no wonder that you are feeling rotten. The herx from the minocycline is a problem, but once you are on the ARBs your 1,25-D will drop significantly (maybe in half) and that will make a huge difference. Your 25-D at 14.4 is reasonably well controlled, but you could concentrate on lowering that a bit more too, but the ARBs are where you are at now. Have a chat with Doc.

..Trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-19-03 07:42

Delma,
200mg of minocycline is a big dose. Cut it back to 100mg if the herx becomes unbearable.

I have never accepted that alternate day dosing of prednisone is any safer (or better) than every day dosing, and it certainly must be exacerbating your symptoms. Talk with Doc about this, too. Hopefully the ARBs will help you wean off the steroid.

..Trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: Delma (---.in-addr.btopenworld.com)
Date:   05-20-03 06:02

Hi Trevor

I dropped by today and picked up my ARB prescription. They do not have Benicar in the UK. However, I don't think the ARB they want me to take is right.

I have a prescription for Losartan, 50mg, take one tablet daily. This contradicts what you have been saying.

Should I still take the Losartan, but get the prescription changed to 80mg tablets and take those 3 times a day?

I have to call the doctor at 4:00pm (my time) to discuss this, so any information would be beneficial.

Thanks

Delma
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-20-03 06:29

Delma,
Benicar in Europe is called Olmetec. I don't think it is available in the UK yet.

Losartan is the oldest ARB, I have never used it because it is the least likely to be effective in Sarcoidosis because it blocks both the type 1 and type 2 angiotensin receptors.

The two ARBs available to you are Avapro and Diovan.
You need Avapro (Irbesartan) at 150mg every 8 hours and Diovan (Valsartan) at 80mg every 8 hours. Both of these levels are above normal prescription thresholds for the NHS. A doctor can over-ride these levels. These are the only two we have found effective, and these are what you should push for, and at these dosages.

The reason that nobody (besides me) has figured out the role of Angiotensin in Sarcodiosis is because everybody else was using the drug once a day, and the ARB leaves the blood too quickly to have any effect on the immune system in that case.

..trevor..
ps: posted at 2:30pm GMT
 
 Re: ***** Please Post General Questions Here *****
Author: Delma (---.in-addr.btopenworld.com)
Date:   05-20-03 10:16

HI Trevor

I spoke to the Doctor about your recommendations for the ARB and she has prescribed me 80mg of Diovan 3 times a day.

She's a bit concerned as I have low blood pressure, so I have an appointment to see her in a week to check my blood pressure.

So..... all systems are go. I'm on the minocycline and the diovan.

I'll keep you posted with how I'm doing.

Thanks again for all your help. Where would we all be without you!!

Cheers

Delma
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-20-03 10:42

Delma,
A blood pressure monitor is something every sarc patient should have. Your blood pressure is a good indicator of your disease state - it goes up when you are sicker, and down as you go towards remission. Increases in your 1,25-D increase your blood pressure most when the disease is most active.

I use a manually inflated monitor that I purchased for $29 from Frys. It has a computerized cuff (which is essential for repeatability) and a manual inflation bulb (this saves $20 or so in cost compared with motor inflation).

But I had a look Boots' online stores and was amazed that the best Boots could offer was a 100 pounds Omron version with inflating motor. Tesco should have the cheaper one, but I couldnt navigate their website (sorry).

Anyway , take a look around, if you can get one for about 30 pounds or so it is one of the best investments that you can make. Use it twice a day initially, and then as you feel changes that you need help figuring out (dizzyness, etc).

..Trevor..
ps: As you get closer towards full remission, and have to start taking Vit D supplements to prevent hypo-D and hypotension, this type of device becomes invaluable....
 
 Re: ***** Please Post General Questions Here *****
Author: peggy (---.tnt1.belvidere.il.da.uu.net)
Date:   05-20-03 11:14

Trevor

Just got my blood test results back. 125D was 97pg/ml, 25D was 33ng/ml. This should make my dratio 2.94. Obviously from looking at my 125D level there is active inflammation going on. Since taking these tests I have started the Benicar 3x day. Weaning off prednisone at 7.5 daily.

Any thoughts or suggestions?

Thanks
Peggy
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-20-03 11:23

Peggy,
33 ng/ml is three times what I would expect for a sarc patient. It shows significant Vit D intake. You will feel a great deal of relief by paying close attention to all possible sources of D intake. The 25-D assay should be in the range of 10-12ng/ml

As your 25-D value gets down towards this target you will find your 1,25-D drops as well. The D-Ratio will also increase a little, as you have such a high value for 1,25-D that all sorts of extra processes are in play.

Benicar will have dropped the 1,25-D level, but I suspect it is probably still above the safe limit. Best way to get it lower is to attend to the D intake.

Anyway, good work - now you know the problem - and the solution - good work indeed...

..Trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: Alison-UK :) (---.bas.cvx.blueyonder.co.uk)
Date:   05-20-03 15:15

Greetings Trevor

I went to see my dermatologist yesterday with a file full of info. He had heard about the theory of bacterias and sarcoid, but was hesitant to prescribe the treatment as he said my Sarcoid was so severe.

He prescribed me the minocycline to treat 'POCS' (polysystic ovary syndrone), so I guess sometimes life is just a bit cosmic!

I couldnt get the ARB or a blood test so off to see another consultant at Morfields eye hospital tommorrow.

Following confirmation by tests of MRI, etc it is confirmed, nuro, eyes, lungs and skin sarc. My sarc consultant says that the sarc is managed. I take 10mx &10mg pred alternate days. When I accdently stoped taking the pred some time age I knew that the sarc symptons came back with a vengence. When I come off these now do you have any knowledge of people experiences whilst being on ARB and antibiotics. Do the sarc symproms flair up?

I am interested as I am due my 2nd cattarax op in august 2003, and want to know when is good timing.

I had cattarax removed last august and It has given me a lot of pain, although the hospital has said it is normal to have unspecified pain for a long time (1 year +) after surgery, I am concerned whether it is normal or does the sarc have someting to do with eye pain. I have not had any new sarc grandulomas in it

If I havn't had skin sarc for 3 years+ and this follows suit with all the other visible grandulomas I have had i.e. x-ray chest....; .... does this mean I am in remission or is the sarc is still evolving............Do have fatigue etc..

Do I need to get the ARB before starting the minocline, and what happens if I start the minolinne without ARB

Phew loads of questions.

........Thanks for your time, really appreciate it......


regards Alison-UK

 
 Re: ***** Please Post General Questions Here *****
Author: Alison-UK :) (---.bas.cvx.blueyonder.co.uk)
Date:   05-20-03 15:30

Trevor

opps forgot to mention.....

100mg of minocycline once per day.... is this does going to be ok?

sarc brain!! Alison-uk !!
 
 Re: ***** Please Post General Questions Here *****
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-20-03 16:25

A blood pressure monitor is a good investment considering there is a virtual epidemic of hypertension, the AMA has recently lowered the B/P levels for which they recommend treatment and monitoring is the first step to controlling blood pressure.

The June 2003 issue of Consumer Reports describes tests they have done on 16 top-selling home blood pressure monitors. These tests considered consistency, accuracy and convenience. They gave the most weight to consistency because you can adjust for a monitor that is inaccurate but consistent--it measures blood pressure, say, 5 points higher than the true pressure, but the readings seldom vary. Once you found that consistent error by having your physician check your monitor, you could simply subtract 5 points each time. But you can't adjust for an inconsistent monitor whose readings jump all over the place.

Two versions of the Omron arm automatic receive the Consumer Reports highest score. But at $80 and $70 they are pretty pricey and may have more features than you need. The $80 Omron, however, is the only top-rated model whose maker says it's appropriate for people with arrhthmias (irregular heartbeat).

They give a 'Best Buy' ranking to a Wal-mart brand called Relion which is an arm automatic and is made by Omron. It gives essentially the same excellent performance as the $80 model, works faster and has several of the same features for only $50. The other machine that gave consistently accurate readings is Lifesource Onestep, also an arm automatic. The others, including arm manuals were not as consistent. CR does not recommend wrist machines.

The manual arm monitors, also called semi-automatics, offer reasonably solid performance at lower cost --$35-$50-- than most others. While the readings display automatically, you have to inflate the cuff by pumping a bulb. so they're the hardest to use, and they measured pressure less consistently than the best automatics.

Using a monitor that scored only fair or even good on consistency theoretically might lead to inadequate treatment in some cases. But a monitor's performance can vary from person to person. So if you own a lower-rated meter, it's particularly important to have your doctor check it against a professional meter. If the readings seem inconsistent--or fluctuate inexplicably at home--consider switching to a higher-rated model.

It's a good idea to have any monitor checked against a professional machine, preferably a mercury device, for accuracy, every six months, or sooner if you've dropped it. You can usually do this at your doctors office or a public health office for free.

Interestingly, the Consumer Reports medical consultants recommend treating "white-coat hypertension". These are elevations in blood pressure apparently triggered by the anxiety of a doctors office visit. These elevations may indicate that blood pressure rises outside the office whenever the person feels tense.

IMO, if you're taking any medication that might alter your blood pressure a home monitor is a must. I hope these suggestions will help you decide which one to purchase.

Meg
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-20-03 17:32

Alison,
If you start the minocyline without having the ARBs in place to block the generation of 1,25-D then you might get knocked around by the herx. However the antiobiotic is what kills the bugs, so it is better to take a low dosage of minocycline (drop the dosage to to limit the herx) than no dosage at all.

The D metabolites tell you a lot about your disease, and give you some data points to recheck as your treatment progresses. The 25-D also double-checks that you have been successful in cutting your Vit D intake.

100mg might be too much for you, I suggest starting at 50mg (see paper in top right hand corner for guidelines). Some folks empty out half the first few capsules. That is less hassle than getting smaller capsules as well as bigger ones

..Trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: Betty Campbell (---.48.194.203.acc01-dryb-mel.comindico.com)
Date:   05-20-03 20:19

Hi Meg,

Since fairly recent total knee replacement op. I seem a bit slow in catching up, owing to overdose of physio/hydro exercises.

-- While undergoing an abundance of pre-op tests, the subject of Tetanus injection came up and I begged to be excused as I have still got another 5 years to go for that. In Australia it is available alone, and my GP tells me that Pertussis is given not only for convenience but because adults act as an infectious reservoir in the community that may infect children with life threatening infection.

BTW, I was also told I would, after the op, start on Ibilex 500 as my abx, to which I also remonstrated, having had an unhappy experience with it a year or two ago. My surgeon told me it was that or something much stronger, so I gave in, and as it happened, this time had no bad effects from 3 times daily of that abx. I was able to put my own strong ProBiotic (FloraMax,) from home, into the frig in my hosp.bedroom. Had 30 IBilex 500 tabs, together with daily iron tab, until I begged off that after 2 more weeks at Re-hab hosp.

Had to put my Minomycin therapy on hold, and unfortunately, during 8 days priv. hosp, and 2 wks after-care at Re-hab, I was not able to talk those doctors into anything stronger than 75mg AVAPRO daily, but as soon as I came home, have been taking 150mg AVAPRO every 8 hours, and as soon as my days at outpatients hydro/phsio, are over, I shall get back to the Minomycin and the herx. Some folk will do anything for attention, so I fell backwards in the hosp. and had a moulded splint put on right arm as got an undisplaced fracture of the radius. Now free from this, but more physio for arm! Ho hum, life is never dull.

Betty C
P.S. I still think Avapro is the best thing since sliced bread!!
 
 Re: ***** Please Post General Questions Here *****
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-20-03 20:43

Hi Betty,

It's good to hear that you are recuperating with your sense of humor still intact, if not your bones.

Taking the quality probiotics with the antibiotics was a wise move. I wish I'd see more doctors order the two in tandem. It would prevent a lot of gastric discomfort in the patients I see. The probiotics will do no harm and the only drawback is their moderate expense.

Aren't you the bold one to defy the doctor and take your Avapro at the effective dose?! I love your 'sliced bread' testimonial . Do you expect that the doctor will relent and prescribe the higher dosage when he sees you haven't succumbed and are actually feeling better?

Surgical recovery is such hard work. Give yourself a pat on the back for dealing with your sarcoidosis at the same time. You sound like one tough cookie.

Be well,

Meg
PS. Thanks for the tetanus info. I'm calling Public Health tomorrow to see what's available in the States.
 
 Re: ***** Please Post General Questions Here *****
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-20-03 21:15

Delma,

I've had some experience with low blood pressure and ARB therapy. You can read about it on ARB Therapy-Nuts and Bolts

In short, although it has reached quite low levels (76/50) at times, it has not been a real problem. I occasionally experience transient postural hypotension. This means I get lightheaded when I get up quickly. It occurs less frequently now that my Herxheimer reactions are mild so I suspect that the Herx may have something to do with it also.

The solution was simple. I get up slowly and pause if I feel lightheaded. Within seconds, I'm clearheaded again and I continue with what I was doing. It's nothing to be afraid of unless it persists. Check your B/P when this happens and if it is higher than 90/60, any lightheadedness (dizziness) is more likely to be Herxheimer.

I also had periods of wooziness or spaciness or a feeling of intoxication. These were easy to attribute to Herxheimer reaction alone and were quite different from the above possibly hypotensive symptoms.

I had low blood pressure (106/76) when I started Benicar. Keep in mind that we all react differently to meds. You may not experience much B/P decrease and at least one person has reported no decrease but great relief of sarc symptoms.

Don't be afraid to try the ARB at Trevor's dosage protocol. Having sarcoidosis seems to make us react uniquely to this medication. The doctors will just have to learn that from us.

Be well,

Meg
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-20-03 21:22

Meg,
I don't think we may be reacting uniquely to ARBs. I think everybody taking them (millions of folks) also get the same effects, but their lives are not ruled by 1,25-D the way ours are. Their cardiac improvement, however, is due to the same reduction in Th1 (bug-induced) inflammation that makes us feel so much better... It is only a matter of degree, IMO...

..Trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-20-03 21:32

Trevor,

I'm glad to hear that because I convinced my husband's doc to order Benicar for his mild hypertension when he would have preferred to order and ACE inhibitor or nothing. I was hoping that it would have the same wonderful antiinflammatory effects for him at the usual dosages.

Hubby, whose B/P is an average 130/88 without treatment, is unable to tolerate more than 20mg of Benicar a day. Any more and he gets lightheaded on the golf course (heaven forbid!). With 40mg his pressure decreased to 90/70. This is quite a different response than I have gotten since I am able to tolerate 40mg every eight hours despite no history of hypertension. Is this perhaps the tendency of 1,25-D to raise blood pressure?

Meg
 
 Re: ***** Please Post General Questions Here *****
Author: John (---.oc.oc.cox.net)
Date:   05-20-03 21:55

Flu shots and the like.

I have never had flu shots until I was diagnosed with Sarcoid and my pulmonary Doc insisted that I needed to get one every year now that I am at high risk because of the lungs. I had the same concern that since Sarc is a "weird" disease that almost everything I do health wise has to be considered in the context of what possible reaction might result. I had one flu shot year before last with no reaction. I need to get hepatitis shots for A and B before I travel any further. It is highly recommended to have these when you travel to a lot of places but I was concerned that I might have a "weird" Sarc related reaction to those also. But, the alternative to getting hepatitis when it is entirely preventable with these vaccines seems worth the risk. ( At least A&B) Another of the questions we have that nobody has an answer for.

My optomoligist even suggest Lasix surgery after finding Sarcoid in my eyes for the first time this year. He claims that he has had other patients with Sarcoid that have had Lasix surgery with no complications but I decided against that one. Didn't really like that in the first place, even without the Sarc.
 
 Re: ***** Please Post General Questions Here *****
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-21-03 06:48

John,

Whether or not to get the flu shot or hepatis A/B is a very personal decision. It sounds like you've weighed the risk/benefit ratio carefully. If sarcoidosis patient is frail and likely to have a difficult time fighting a flu infection, then the shot might be beneficial for them. If you are traveling to foreign countries the risk of Hepatitis A/B is increased and that may justify the shots for you. I got the flu shot annually until last year and had no adverse reactions. I got the Hepatitis series a few years ago also without reactions. Each situation is different but in general its a good idea not to challenge an immune system that tends to react abnormally.

Meg
 
 Re: ***** Please Post General Questions Here *****
Author: Delma (---.in-addr.btopenworld.com)
Date:   05-21-03 15:23

Hi Trevor and Meg

Thanks for the information regarding getting a blood pressure machine. I'm travelling to Canada in June. Do you think it would be worthwhile waiting until then and getting it there; or should I be getting it sooner than that.

I have been feeling very dizzy and lightheaded tonight, not just when getting up. Plus my legs feel very heavy and it takes a great effort to move them. I'm a dancer, and I feel like they are lacking oxygen. Would this be likely.

I'm taking the antibiotic at night, and I find that that is better for me, since I sleep during the worst part of the dizziness. When I wake up in the morning I feel like I can cope.

Thanks again for this great site.

Delma
 
 Re: ***** Please Post General Questions Here *****
Author: Betty Campbell (---.49.194.203.acc01-dryb-mel.comindico.com)
Date:   05-21-03 15:37

Meg,

No, I'm not that brave! I obeyed the physician attending me for the 8 days at the private hospital, and then after that, another physician attending me during 2 weeks at a wonderful re-hab establishment, by going along with their 75mg prescription for Avapro. (I had no choice in this). It is now that I am home again, and under the care of my GP, that I took it upon myself to get back to 8hrly x150mg Avapro, as my GP prescribed that dose ages ago, after he too, had started me on 75mg daily. It is my local doc (GP) who goes along with the Minomycin and Avapro.

Incidentally, I think in the priv. hosp. they may have thought I was a bit queer, because my room was overly large, with very big picture window overlooking wonderful trees, but I always asked for the heavy drapes to be drawn across, leaving a very small amount of outside sunshine to worry me. I also used an eyeshade at times.

I had an epidural, and 2 days and nights in HDU (high density unit, like ICU), and came out of it with a very itchy rash across my back. So night and morn had Celestone M cream rubbed into it. I guess it took about 2 weeks for this to clear up, and the attending physician at re-hab kept a wary eye on this as he was fully aware of my original biopsy for Sarc being a very itchy rash everywhere, and knew about my abhorence re Prednisolone.

Thanks, Meg... When I can bestir my lazy body I shall jot down, in another thread, why I am so wrapped in Avapro. BettyC
 
 Re: ***** Please Post General Questions Here *****
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-21-03 18:09

Delma,

Dizziness can be caused by either or both the hypotensive effect of the ARB and the Herxheimer reaction. It's sometimes hard to figure out which and it may be a combination.

A blood pressure machine would be a handy thing to have now and then you can take it with you when you travel to monitor your B/P. In general, if the dizziness is not going to cause you to have some sort of accident you can wait until it subsides.

Asthenia (muscle weakness) or heavy legs is most likely a Herxheimer reaction. It is one of my most common. It must be especially disconcerting for you as a dancer.

Timing the minocycline so that you will be sleeping during the worst of the Herxheimer is a smart strategy. I'm happy to hear that you wake up feeling able to cope. This protocol isn't for the wimpy. It's hard work somtimes to get through the Herxheimer. Transient dizziness may be part of the price you have to pay to get well.

Hang in there,

Meg
 
 Re: ***** Please Post General Questions Here *****
Author: Sherri (---.chcgil2.dsl-verizon.net)
Date:   05-22-03 07:10

Dear Trevor,

Per your copyright requirements, I am requesting written permission to print out copies of the information contained in your website - particularly information relating to treatment of sarcoidosis - to present to our doctors.

My husband (36 year old white male) is in his second occurence of Sarcoidosis. It manifested in his lungs the first time but went into remission on its own without treatment. Now, four years later it is back with a vengeance.

He has been extremely ill. He is on Prednisone 40 mg. per day, and after an initial appearance of being effective, his symptoms are returning. Now he has all of the side effects of the treatment on top of the sarcoid.

Although the sarcoid is "tamed down," it seems to be gaining strength every day. Here are some of the symptoms he has had and continues to have at different levels and times: vomiting, fever, low body temp - lowest 94 degrees, violent chills - the longest lasting more than 30 minutes, sweats, low back pain, abdominal pain, severe sinus problems, headache, weight and muscle loss, thrush, sores in the mouth, nose and tongue that will not heal, personality change, anxiety, shakes, moon face, fatigue, muscle spasms in strange and varied places, cough, chest pain, muscle pain, nose bleeds, funny taste in mouth, etc. We are not sure which are Sarcoid and which are Prednisone.

The doctors are saying that the Sarcoidosis may be in his kidneys, spleen, bone marrow, etc. I don't think they have tested for any of it.

Thank you so much for the work you are doing... I have sorted through tons of information, most of it confused and/or hopeless until I finally found your site by typing "sarcoidosis specialist" into my search engine.

Thanks for adding to my ultimate hope in Jesus Christ with your thorough and clearly presented information. I was so excited I couldn't sleep the night I found this information.

I pray that we can find a doctor that will open their mind to the possibilities presented here. I think that is our next big hurdle. If you have any suggestions, please let me know. We have nine children between us (seven at home) and one on the way (a shocking suprise) and they all need their dad (and so do I)!

I would also like to post your website at the other websites I have found without direction or hope if that is okay with you.

May God bless you and bring your work to light in the medical community.

Sherri
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-22-03 07:24

Sherri,
Anything on this website may be printed out to give to your caregivers.

Sure sounds like your husband needs to have his 1,25-D levels normalized ASAP. After that, get the ARB blockade in place and then dad will be a lot more comfortable, and able to commence weaning off the prednisone.

The antibiotic treatemnt will be able to become effective as the prednisone disappears, as you would know, prednisone promotes bacterial and fungal infections.

..Trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-22-03 15:07

Dear Sherri,

Welcome to SarcInfo. If there's one thing you'll find here it's direction! And lots of hope.

Feel free to pass your excitement along to anyone else you know who might be interested in putting their sarcoidosis into remission.

There is a lot of information on this thread on how to find a supportive doctor.

Be sure to let us know if you have any questions. Lots of folks are getting better and your husband can too.

Good luck,

Meg Mangin, RN
 
 Re: ***** Please Post General Questions Here *****
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-22-03 19:22

A local Pubic Health Nurse has informed me that in the United States adults are given a combination of Tetanus and Diptheria in one immunization. The adult vaccine does not contain pertussis, only the children's does. They recommend getting a TD shot every ten years. The booster is the same dose as the original. If you are exposed to possible tetanus bacteria you will be asked to receive a booster if its been over 5 years since the last shot. There is no option of getting just the Tetanus. It's thought that most adults reacted to the pertussis portion but she said people can have adverse reactions to any kind of vaccine. So it looks like if you are exposed and/or are due for a booster you will have to decide if you want to take a chance on tetanus versus a reaction from the TD shot.

Meg
 
 Re: ***** Please Post General Questions Here *****
Author: Louise Brooks (---.wdghu.org)
Date:   05-23-03 05:48

HI everyone, I have a question regarding my stomach medication for my hiatius hernia that was diagnosed in January, I was placed on Periet 10 mg twice daily it says it is a H+, K+ ATPase Inhibitor (rabeprazole sodium) made by Janssen -0rtho, can this upset my Sarcoids?
Since I have dropped all foods containing Vit D and have tried to avoid the sun to the best of my ability my nodules have not been inflamed but very hard and very painful, can feel them now in my ankles when I walk, can't get to see dermatologist until October, that's how backed up things are here in Ontario and my GP is an idiot who wasn't my choice of doctors. He knows absolutely nothing with regards to sarcoids. He didnt think I needed any Vit D tests done and gave me a prescription for Volsorer?sp (can't read his writing on prescription paper) for pain ....and inflamation..any response would be appreciated.

sore and swollen ankles with nodules that keep spreading...
lou b
 
 SARS and Sarcoidosis
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-23-03 10:20

Neelam Patel wrote:
Hello.
I want to now what are the symptoms and preventions of "SARS"?What preventions to be taken to prevent this diseases? Can we cure this, if not why?

SARS is thought to be caused, at least partly, by a virus, a special type of Coronavirus.

The reason that we cannot treat this disease is because it attacks the body differently than a normal Coronavirus. In fact, the similarities between the action of the SARS Coronavirus on our body and the action of Sarcoidosis and the action of some Cancers is quite uncanny.

If you are interested in the technical issues, you will find them online at JOIMR at these two references:
http://www.joimr.org/phorum/read.php?f=2&i=19&t=19
http://www.joimr.org/phorum/read.php?f=2&i=14&t=14

As to why hospitals can't cure SARS yet, the answer (IMO) lies in the similarity of SARS to Sarcoidosis and Cancer, neither of which can be cured by today's hospitals, either.

SARS may turn out to be a blessing in disguise for the millions of people who suffer from Sarcoidosis (and the other immune diseases) as it may bring the medical profession to see that immune disease is a bacterial reaction, with a destructive pathway very similar to that of SARS.

..Trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: Judy, Idaho (---.coldreams.com)
Date:   05-23-03 11:27

Hi all,
Had my wrist surgery and doc says thanks Trevor for the heads'up on the epinephrine. Doing this with one hand takes some time but I am in a cast for another week so I am really thankful that it is only that much longer. He said the cyst has a stump to it and they had to get into the joint to take care of that. One thing I did notice that I have had way heavy herx since the surgery ( I am sure the stress also adds to that, not so much being cut on for me I hate the way the meds make me feel...)but I continue on no way am I missing a dose of my doxy I feel so much better even with more of the herx that I will take it!! In reading Dr. Brown's book he talks about Lupus, I have a friend with a bad case of Lupus and she recently had her spleen removed. I called her and we both have ordered the book to have our own copy and she is excited to try his rx which is what we are doing for sarc. Hey, I can now break eggs to cook with one hand and not break the yoke!hee,hee.....life is so full of little things I have so learned to stop and small the roses.
Best of health,
Judy
 
 Re: ***** Please Post General Questions Here *****
Author: Delma (---.in-addr.btopenworld.com)
Date:   05-23-03 11:41

HI Trevor

I know I'm not looking for a quick cure, but since I've been on Diovan I've been feeling much worse. Wednesay, my legs were VERY heavy and sore and today it seems to be everywhere. Even my back, when sitting. I seem to have no strength in my muscles at all.

I've only been on the Diovan since Tuesday, but I guess I'm just wondering if this is Herx. I'm also very dizzy and disoriented.

Thanks

Delma
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-23-03 11:53

Delma,
Can you look at the bottle of Diovan and check whether you have got "Diovan" or "Diovan HCT" and look for the word "hydrochlorothiazide" anywhere. Please tell me what you find.

..trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: Delma (---.in-addr.btopenworld.com)
Date:   05-23-03 13:10

HI Trevor

Unfortunately, I have the 80mg capsules, not the bottle and it appears that the "leaflet enclosed" isn't there. I only have a prescription for one week and then I have to get my blood pressure checked. On the box, it only says Diovan 80mg capsules... valsartan.

I know this isn't too helpful. sorry!

Delma
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-23-03 13:14

Delma,
Ok, I know those capsules (I think). How many do you take each day?

..Trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: Delma (---.in-addr.btopenworld.com)
Date:   05-23-03 13:15

Trevor

I was just thinking. Maybe I could go to my chemist tomorrow and ask if my prescription is Diovan or Diovan HCT.

Delma
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-23-03 13:28

Delma,
How many of the 80mg capsules do you take each day?

..Trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: wendy (---.stcgpa.adelphia.net)
Date:   05-23-03 16:27

Meg - I wanted to add to your excellent review of BP monitors as I recently purchased the Walmart "Relion" BP monitor and checked it against the doctor's at their office this week.

It was 10 degrees off for the bottom number...So, reliability may not be its strong suit. It was consistently off as I checked it the next day at my GP's office during another doctors appointment.

So, I wanted to remphasize your suggestion to check the home monitor against that of your doctors. I'd been under the impression my BP was fine at 107/60 something, turns out the readings were really in the 50 somethings!
 
 Re: SARS and Sarcoidosis
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-23-03 20:42

Louise,

It sounds like you are taking an antisecretory agent to suppress gastric secretion. I am not aware of any contraindications to taking it due to your sarcoidosis.

I can't comment on the medication the doctor prescribed for pain because I need the exact spelling, preferably the generic name because brand names are different here in the States.

It is okay, though, to take Nonsteroidal Antiinflammatory Drugs(NSAIDs) like ibuprofen, naproxen, diclofenac, etodolac, fenoprofen, flurbiprofen,indomethacin, ketoprofen, ketorolac, meclofenamate, mefenamic acid, nabumetone, oxyphenbutazone, phenylbutazone, piroxicam, sulindac, or tolmetin for your aches and pains.

I can't imagine having to wait so long to see a specialist. Can you get in to see a different GP sooner? I'm glad you seem a bit better after avoiding Vitamin D. Try to keep up that vigilance while you are waiting to see doc.

Take care,

Meg
 
 Re: ***** Please Post General Questions Here *****
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-23-03 20:49

Wendy,

Your experience with the Relion B/P monitor puts out the advantage of consistency over accuracy. You now know that your machine reads consistently 10 points lower for the diastolic pressure so you can adjust the readings. With this adjustment the readings will be accurate consistently.

Thanks for sharing!

Meg
 
 Re: ***** Please Post General Questions Here *****
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-23-03 20:56

Hi Judy,

Thanks for letting us know you are going so well post surgery. Sounds like you're becoming a one-armed wonder. I hate to 'rain on your parade' but I hope you're cooking those eggs for the rest of your family since they contain Vitamin D.

Take good care,

Meg
 
 Re: ***** Please Post General Questions Here *****
Author: Delma (---.in-addr.btopenworld.com)
Date:   05-24-03 01:26

Trevor

I take 3 - 80mg capsules each day. I take one every 8 hours.

Delma
 
 Re: ***** Please Post General Questions Here *****
Author: Delma (---.in-addr.btopenworld.com)
Date:   05-24-03 02:25

Trevor

I've been to the chemist and he said that the Diovan is just valsartan. No HCT in it.

Delma
 
 Re: ***** Please Post General Questions Here *****
Author: Judy, Idaho (---.coldreams.com)
Date:   05-24-03 08:36

Meg,
Yes, you are right I am cooking them for the rest of the family, one thing I have learned is that this site offers me so much information to help me feel better. I took eggs out of my diet months ago(never liked them that much anyway)seemed I was always sick after I ate them ,most likely the VD.
I am on my way up again on the doxyc so I am getting ready for more herx.
One thing I have noticed is that the bottom of my feet feel better (I suppose that is short lived right now)but I can see the rainbow!!!!Interesting thing is that on the xrays they have noticed RA, humm....I knew that...hee hee, but after being on this treatment my joints are feeling better too. Thanks again for this site!
Take care,
Judy
 
 Re: ***** Please Post General Questions Here *****
Author: Judy, Idaho (---.coldreams.com)
Date:   05-24-03 08:59

Humm,
Here is a site DIRECTORY OF SARCOIDOSIS EXPERTS
www.sarcoidcenter.com/sarexperts/sarexpertsura.htm#UnitedStates
it gives a nice list of states with doctor's names and addresses.

Moderator comment: This list is merely a directory of doctors who treat sarcoidosis and have asked to be included on it. Use it with the same caution you would any other resource.
 
 Re: ***** Please Post General Questions Here *****
Author: Sherri (---.chcgil2.dsl-verizon.net)
Date:   05-24-03 17:31

Trevor,

I find it incredible how fast you respond to all of this email! Thank you! I have a couple of questions:

1. Joe's blood pressure taken yesterday when he ended up in the hospital (because of fever 103.5 and delerium among all of his other symptoms) was 117/98 and usually is pretty low. How will that affect his ability to tolerate the ARB therapy?

2. Today he had chills and sweats but not much fever. He salivating so much that he has to keep a cup to spit in and put a towel under his mouth when he sleeps. He is also nauseated and cannot eat more than a few bites of food at a time. This makes him miserable. Have you heard of this symptom? Do you know if it is sarcoidosis or prednisone? I think he may have had this symptom BEFORE he went on the prednisone.

Again, thank you so much for your care and concern. I got the ER doctor to send for his 1,25-D test. Hopefully, with this in hand I will better be able to convince the doctors to try this treatment.

Gratefully,

Sherri
 
 Re: ***** Please Post General Questions Here *****
Author: Sherri (---.chcgil2.dsl-verizon.net)
Date:   05-24-03 17:59

Hello again,

Forgot to ask a very important question:

Where can I get info about how to reduce Vitamin D? Food to avoid, food that can be eaten, recipes, or any other info.

Thank you so much.

Sherri
 
 Re: ***** Please Post General Questions Here *****
Author: Margo (---.adsl.duke.edu)
Date:   05-24-03 20:28

Sherri,

Here are links to two threads on this site where Vitamin D in foods, and recipes are discussed. You can also do a search of the site.

Recipes without Vitamin D

Vitamin D levels in food

Margo
 
 Re: ***** Please Post General Questions Here *****
Author: Michael (---.sjc.marketscore.com)
Date:   05-24-03 20:30

Hi Everyone,

This is a bit of a difficult and personal question to ask but have any of the male participants had difficulty with sexual dysfunction? I am not sure, but I think my problem started when the doctor told me that I had sarcoidosis. My doctor keeps telling me that it's in my head and gives me viagra, which gives me a headache and I feel like my face is on fire. And it last for several hours. And on top of everything the viagra only works some of the time.
I am 56 and in otherwise good health.

Any advice would be appreicated.

Michael
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-24-03 20:33

Michael,
One of the hormones affected by 1,25-D is testosterone. You really need to get your D metabolites tested, and institute measures to control your intake so that your 1,25-D stays down at normal levels (about 29pg/ml).

..Trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-24-03 20:46

Sherri,

I'm sorry to hear your husband is so sick. Have the doctors determined the source of the fever? Did they keep him in the hospital? What medications is he getting? His diastolic blood pressure (the lower number) is quite high. Is he getting medication for that? If so, he's got good reason to request Benicar which is also an antihypertensive.

Increased salivation is not a common sarcoidosis symptom but if he has inflammation in his salivary glands, it could be due to sarc.

I hope that ER doc ordered the right D-metabolite tests. It's extremely important to get that information. It takes about 3 days for the results of those tests to come back. You may have to call to inquire. When you do, ask for the exact numbers and measurements (ng or pg/dl), don't let them just tell you it was okay or normal. Then let Trevor know what they are and he will analyze the numbers for you.

You can find out more information on which foods to avoid on Vitamin D Levels In Food Check all his vitamin, herb and other supplements to make sure they don't contain Vitamin D. Fish oil is a no-no. After you read the thread let us know if you have specific questions.

You can use the search feature of this site too to answer other questions. Just type in a word/s and then change the setting to all dates for the most complete search.

Please give our regards to your husband. He's lucky to have you looking for answers for him.

Meg
 
 Re: ***** Please Post General Questions Here *****
Author: Delma (---.in-addr.btopenworld.com)
Date:   05-25-03 02:25

Hi Trevor

I've been to my chemist and he said that my Diovan is just Valsartan, no HCT in it. I'm taking 80mg three times a day.

My legs are and muscles are still weak. But it's ony been 5 days. Maybe my body will get used to this drug.

What do you think?

Delma
 
 Re: ***** Please Post General Questions Here *****
Author: Sherri (---.chcgil2.dsl-verizon.net)
Date:   05-25-03 05:05

Dear Meg,

No, the doctors do not know the source of the fever. He has had the fever from the beginning, so we assumed it was from the sarcoidosis. It abated completely during initial steroid treatment. He has been tested for every infectious disease known. In fact, he was sent to an infectious disease specialist. We have an appointment with him next Tues. and I will present this information to him. I can only hope he will listen. He is an excellent doctor.

All they did in the hospital was start a saline IV, draw blood and finally administered 1 gram of Rocephin and then sent him home. His fever was over. It and all of his other symptoms run in cycles. It is strange... first he gets chills, then fever, then the fever breaks and sweats, salivation and nausea begin along with a low temp. The cycle has changed and even gone away as he has been treated, but it came back and it is always a cycle. He always knows what to expect next, only not how long it will last.

The only meds are the prednisone except for that Rocephin they gave him in ER. He does take ibuprophen for fever (which seems to have no effect - it stops when its cycle is over), Tagamet for indigestion/acid and he has Carafate for the thrush that the pred causes. Since this started in March he has been on so many different meds... but since April 10, he has been only on the prednisone. They gave him a nasal spray (Ipratropium bromide .03%) for his nose (he has had trouble with sores and bleeding since the bronch) but he hardly uses it.

They did not say a word about his lower number being high. I thought it was, but I did not ask about it, believing that they would know something as simple as that. So no meds... according to Trevor, he should "...have his 1,25-D levels normalized ASAP. After that, get the ARB blockade in place..." Is that accurate? I will use that info to try to convince the doctor on Tues. if he can go ahead and start. Please respond ASAP... you always do... don't you guys ever take a break?

I am overwhelmed with gratitude and relief to have someone to talk to about all of this. I don't know if I told you, but I am 8 mo. pregnant and your site has been an outlet for my stress, worry and has helped with my wacky emotions. Please let me know if I am giving too much info. I realize how much email you probably get and don't want to overburden you. I will try to keep things clear and concise. Thank you so much for everything including the Vit D and search info.

Sherri

P.S. The ER Doc took the printout from this site with the D test info on it so I too hope that it is the correct test. It was the page with the formula on it. Do you think that will do it?
 
 Re: ***** Please Post General Questions Here *****
Author: Sherri (---.chcgil2.dsl-verizon.net)
Date:   05-25-03 06:24

Dear Trevor,

Can ARB therapy (Benicar) be started while my husband is on prednisone 40 mg. and before his D levels drop? I don't have the results of the D test yet, but will send them as soon as I get them. I would like to get Joe started on Benicar next Tues. if the doctor is willing so need to know if the D level or prednisone matter.

Thank you,

Sherri
 
 Re: ***** Please Post General Questions Here *****
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-25-03 06:49

Delma,
That is the correct dosage of Diovan and the correct form of the drug. But we don't have any idea what your D-Ratio or 1,25-D were before starting on the ARB. Based on the difficulties you are having,I have to assume yours were quite high. All we can do now is wait for things to stabilize. It really is quite a shock to the system when such an important steroid hormone gets to change in levels so radically and so quickly, and it will take a while for all the other hormones to stabilize again. Wendy broke her tablets in two to cut back her dosage for a few days (you would need to empty half of the contents of your capsules to emulate this) so as to ease her body into its new status. I suspect this would not help you at this point, as the worst is probably over, but you might keep it in mind. The key thing is to remember to take the ARB EVERY SIX TO EIGHT HOURS or it will not be an effective blockade.

Sherri,
ARBs can be started anytime, but a few folks, especially those starting from a very high level of the hormone, will have problems like Delma has been having. Sometimes the high dose of Prednisone makes those problems even worse. 40mg of prednisone should really only have been used for short periods, it is a VERY high dosage. Only 7.5 mg (or so) is needed to totally shut down the adrenal glands, and 40mg is really applying a vise-like grip upon the immune system. That is not good when it extends for more than a few days at a time. The doctors treating SARS are acknowledging they don't want to use prednisone at those dosages, so why don't our pulmos wake up and smell the roses? I think it has something to do with feeling helpless..

Well, I can assure you there are a lot of recovered and recovering patients here on SarcInfo that certainly don't feel helpless, and really that is the key issue. Once you realize this disease can be licked, and it really is a very simple disease, from a very simple cause (the CWD bacteria) it makes putting up with the remaining suffering a lot less worrisome.

..Trevor..
 
 Re: ***** Please Post General Questions Here *****
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-25-03 07:56

Sherri,

No, you're not sharing too much information. It's all helpful.

You said that the docs have tested for every kind of infection but have discovered no cause of the fever so they think it's the sarcoidosis. Rocephin is a broad-spectrum antibiotic, not thought to be effective against the CWD bacteria that cause sarcoidosis. If it successfully eliminates your husband's fever, I would conclude that some other infectious process is going on, most likely allowed to continue because of the high dose of Prednisone that is suppressing his immune system. This is another reason to ask the doctor if he can begin weaning off the Prednisone.

What is his primary doctor's specialty, the one who is managing his care and ordering the steroid? Has he treated many patients with sarcoidosis? If the infectious disease doctor is excellent, as you say, he will listen. They don't seem so far to have gotten to the root of his health problems. And treating symptoms only will not help him get well.

You mentioned that he is taking carafate for his thrush. But carafate is an old-fashioned ulcer remedy. It's a combination of aluminum and sugar that coats the stomach. It has a side effect of nausea. Ipatropium is a bronchodilator and works in the lungs to reduce bronchospasm. I'm unaware of it being used as a nasal spray. Lots of folks have sarc involvement in their sinuses and nasal passages.

You can sort out the origin of his symptoms if you do a little research on this site. At the bottom of the page are links to articles on Prednisone where you can find its side effects and consequences such as allowing infections to run wild. The symptoms of high levels of 1,25-D are on this thread Whereever he has granulatomous lesions that have interfered with the function of an organ, such as the lungs, he will have symptoms of that organ dysfunction. You might make a list to show his doctor.

I can only imagine how overwhelming this disease must be for you with your pregnancy and large family. Is your husband able to work? Is he avoiding Vitamin D and sunlight? I hope that you will get the help you are looking for when he sees the specialist next week.

Good luck,

Meg
 
 Re: ***** Please Post General Questions Here *****
Author: Delma (---.in-addr.btopenworld.com)
Date:   05-25-03 10:42

HI Trevor

My 1,25-D level is 49.6 and my d-ratio 3.6. So, I know that is quite high. So I think I just have to be patient.

Lots of times, when I'm sitting doing nothing, I feel fine and I think "Oh Good!!" But then, even helping unpack some groceries can send my arms, legs and back into spasms and shortness of breath and I have to sit down again.

I believe that this will work. I just have to be patient, but it's not easy when you feel so rotten and dizzy and sore all the time.

Thanks

Delma
 
 Re: ***** Please Post General Questions Here *****
Author: Theresa (---.roadrunner.nf.net)
Date:   05-25-03 19:43

Hi,

Both my husband and my son have been diagonsed with Sacroidosis within six months of each other. My husband (47 yrs old) for the most part is asymptomatic but our son (24 yrs old) is not quite as lucky. I have spent the last few hours reading information on this site and even though it is overwhelming and way over my head, I want to take a moment to thank all of you for shaing what has to be a very painful and frustrating experience.

Now that I look back on my son's past health problems I can link a lot of those mysterious illness to this condtion. (cough, aching joints, chest pain, profuse sweating, rashes, etc.) For the last four weeks, my son's ankles are very swollen ankles and he has what appears to be bruises on both shins. My question ... is this related to Sacroidosis?

For my son, the diagnosis is just beginning ... we live thousands of miles apart but I am hoping to be able to help him by learning what I can about this.

Again, thank you so much for your information.

Theresa
 
 Re: Archive of General Questions to 25 May 2003
Author: freddie ash (---.ipt.aol.com)
Date:   05-26-03 07:53

Hi Michael

This is Fred in WV. I have had sarcoidosis since Aug 1972, but was not diagnosed until Feb 1982. I have had sexual disfunction since Sept 1981. I have ask this question to a lot of urologist if there was a connection between my disfunction and the sarcoidosis. They all told me no over all those years. But in Mar 1997 I received a booklet from Dolores O'Leary (she is editor of SARCOIDOSIS NETWORKING paper). It had in it the following and do quote it word for word.

"WILL HAVING SARCOIDOSIS AFFECT MY SEX LIFE?

NO. HOWEVER, IF YOU HAVE SARCOIDOSIS OF THE
NERVOUS SYSTEM, YOU MIGHT EXPERIENCE IMPOTENCE.
THIS FEATURE IS RARE BUT DOES HAPPEN."

If you or any one wants to email me about anything please feel free to do so at freddieandsue@cs.com

Your friend in sarcoidosis
Freddie
 
 Re: Archive of General Questions to 25 May 2003
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-26-03 10:43

Freddie and Michael,
Freddie, I have news for you. Your Urologist was wrong. Dead wrong. And Dolores was also wrong. Dead wrong.

I gave you the answer. The hormone 1,25-dihydroxyvitamin-D controls many of the body hormones, including Testosterone. If you search PubMed you will find dozens of papers describing interactions.

Finally, all this talk about "sarcoidosis of the nervous system" was written by people who do not understand endocrinology, who do not understand how the operation of each bodily function is so inter-dependent on the proper operation of another. Dividing Sarcodiosis into many supposedly seperate types of disease has not been helpful to finding a cure. Sarcoid inflammation, whichever organ it occurs in, is the problem, and ALL the symptoms (including impotence) are fixed whne the inflammation is removed (by the ARB and Antibiotic therapy).

..Trevor..
 
 Re: Archive of General Questions to 25 May 2003
Author: Louise Brooks (---.wdghu.org)
Date:   05-26-03 11:08

meg,
Thanks for answering my question. I recieved call for dermatologist appointment not until Sept 11th. So a long wait indeed. Am vigil about Vitamin D products there is a noticble improvement. Now after reading other information on this site I am wondering something else, I have been on Coragard for 17 years for skippy heartbeats, I find they are worse during hormonal changes during that "time" of the month, now I am wondering if it has not been related to the d - metabolites all this time because when My ankles were at there worst, I had a whole week of irregular heart beats that the doctors dismissed as nothing to worry about, that other people feel them more than others....anyway just wondering. Also the pain has started in other ankle but no nodules.

sore and swollen ankles with nodules that keep spreading...
lou b
 
 Re: Archive of General Questions to 25 May 2003
Author: freddie ash (---.ipt.aol.com)
Date:   05-26-03 14:11

Hi Trevor and Michael

This is Fred in WV. Trevor, in my research I also found that granulomas on the tube that runs from the pituitary gland to the brain can cause impotence also. I had an xray of that in the late 1980's when I found this out, nothing ever showed in them. I have had blood test of the testosterone and it was in normal range. The doctors even gave me shots of the testosterone. Nothing ever helped.

Your friend in sarcoidosis
Freddie
 
 Re: Archive of General Questions to 25 May 2003
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-26-03 14:44

Freddie,
The answer is to measure, and then get control of, the level of 1,25-dihydroxyvitamin-D being manufactured in your body. there is no other answer. All that you have read before is old information based on discredited research.

..Trevor..

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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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