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-site, or the Autoimmunity Research Foundation.
 
This archive of the historic study is maintained by volunteers from the Foundation. The material here provides useful background, but much of it is now out-of-date.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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 What Questions to ask a new doctor?
Author: Dorothy S (---.roadrunner.nf.net)
Date:   07-20-02 10:46

Trevor, I was diagnosed with sarc 2 weeks ago my symptoms are:
shortness of breath, hip pain, some eye problems, 7 raised red spots

I was going to a GP who sent me for tests. He origionally thought I had arthritis because of my joint pain and prescribed celebrex. But after the tests; chest scan, blood work, biopsy of one of the red spots he suspected I had sarc and refered me to the lung specialist.

The results of my tests were forwarded to the specialist, and when I visited him he didn't examined me or ask if I had any other symptoms. He just said you have sarc and prescribed the prednisone. He prescribed 40mg of prednisone daily and said I should be on it for 1 year. After reading some of the forums I decided not to take it because I feel my symptoms are not bad enough to take a chance on the side effects of the drug. However I am concerned that if I don't take anything the sarc may get worse.

I am going to see a new GP on Monday and I want to know what questions I should ask, especially about which drugs will help with my shortness of breath. I take the celebrex every 2 or 3 days and it helps with the hip pain. I would appreciate any help you can give in supplying me with a list of questions I should ask, and the tests I should have done.
Dorothy S
 
 Re: What Questions to ask a new doctor?
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-20-02 11:25

Admin note: Click here to go to a new document on the D tests, and a list of labs where you can get them done

Dorothy,
Make sure that your serum 1,25 Dihydroxyvitamin D3 and your serum 25 Hydroxyvitamin D3 and your serum Angiotensin Converting Enzyme are measured. You must have all 3 data values to get a good picture of sarc-macrophage activity.

One lab that performs these test is Specialty Labs, in California. Click here to get the information to print out for your doctor.

Mayo Clinic Labs also does the test.
Click here to open up the page describing the 1,25-dihydroxyvitamin-D test at Mayo
Click here to open up the page describing the 25-hydroxyvitamin-D test at Mayo

Your local lab (or your doctor) takes the blood as described on these pages and sends it off to Mayo or Specialty Labs for the analysis. Print out all these pages and give them to you Doctor, who will then be able to make sure the correct test gets done.

Then make sure you get a copy of the raw data results. You need to understand what the data might mean when you later discuss with your doctor what is 'normal' or not. File the results away, they may come in useful later on. Under no circumstances allow your doctor to panic if he/she finds your Calcium/Vitamin D3 levels do not make sense. Typically the 25 hydroxyvitamin D3 is at the low end of normal <25 and the 1,25 Dihydroxyvitamin D3 will be normal to high >29. Do not allow him/her to prescribe supplementation until after you have had a chance to correlate all the data together.

IMO, You decided correctly not to take prednisone without biopsy-confirmed sarcodosis. The medically accepted standards for prescription of prednisone are set out in Dr Marc Judson's paper, and, based on what you have described, your situation is nowhere serious enough at this point.

The pain in the joints comes from the same type of inflammatory response as sarc is causing in those skin nodules. It will only go away after you fix the high level of 1,25-dihydroxyvitamin-D3 that is feeding the inflammation, and fix it.

If you are going to see an open-minded doctor, you should also ask for a bacterial screen, to make sure there are no undiscovered bugs in your body that might respond to antibiotics.

Forget about fixing the shortness of breath or pain at the first appointment. Concentrate on getting the tests done and schedule another appointment so you can review the test results, and possible therapies, with your doctor. The sequence should be
1. Get all the tests done
2. Get a copy of the raw data when it comes back from the various labs (ask the nurse for a copy)
3. Review the data yourself (and ask questions her), and
4, Make a follow-up appointment to review the test data and potential therapies with your doctor

..Trevor..
 
 Re: What Questions to ask a new doctor?
Author: Caroline (---.win.org)
Date:   07-23-02 20:10

Hello Trevor,

In your answer to Dorothy you said "you should also ask for a bacterial screen, to make sure there are no undiscovered bugs in your body that might respond to antibiotics".

To your knowledge, is there any 'screen' that would indicate an active fungus? I am not sure if you recall me mentioning it but a broncoscopy last year and done by a different pulmonary doc grew 'geotrichum' after about 5-7 days in culture. My new and current pulmonary wants to do another broncoscopy to re-check that finding.

Thank you, Caroline
 
 Re: What Questions to ask a new doctor?
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-23-02 20:43

Caroline.
It's all a matter of what your Health Benefits want to pay. There are some really modern labs that even use PCR DNA techniques to find small traces of fungus and bacteria that are not detectable with normal screens. Take a look through the website of this lab (below), and you can see the huge range of tests available. I am sure your doctor routinely uses a much less expensive lab to do his/her work, but at least you will know what is available.

http://www.immuno-sci-lab.com
This page has the fungal anti-body screens
This page has the parasitic bacteria anti-body screens

..Trevor..
 
 Re: What Questions to ask a new doctor?
Author: colin (---.syd.pacific.net.au)
Date:   07-29-02 00:58

I need some assistance, having just received results of a chest Xray, stating ....
"The earliest film made for comparison was dated Aug 27 1999. This alreqady shows a minor infiltrate in the upper right lobe region but it is significantly less prominent that at today's examination. The diagnosis is not clear but the possibility of infiltrateion from a process such as sarcoidosis must be considered as well as atypical inflammatory infiltrates."

I am taking theses results to my ' consultant respiratorytory physcian, MB, BCh, FRACP ( is this impressive?)'' tomorrow:
a) 5 weeks ago I coughed up blood. About a tablespoon three times a day for about three days.
b) Xray and CAT scan showed upper lobe: they suspected might be TB.
c) admitted to hospital where I had some heavy antibotic twice daily via a drip, a Mann-too (sp?) Test (negative: no TB) and a brochiostomy.
d) my Dr. is a seretive sort of a fellow. He discharged me from hospital with the discharge report reading pneumonia.
e) in light of the above, any advice would be welcomed. I am in terror of becomming a test case for him and medication.

All advice welcomed.

I am 60, live in beautiful Australia, and have just given up smoking.

What to do, folke, what to do?

Colin
 
 Re: What Questions to ask a new doctor?
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-29-02 01:18

Colin.
The talk of infiltrates refers to shadowing which could be due to inflammation, calcification, or fibrosing. The shadowing is still at a very early stage.

No, MB,BCh,FRACP is pretty standard for a specialist in Sydney.

The Mantoux test would be positive if you had TB.

The coughing up blood worries me. This is not typical for sarcodiosis. It could indicate a serious infection, it could also indicate some other damage to the Interstitial tissue.

If your doctor is secretive it is usually because he is not sure what he is doing. My advice is to get a new one. Immediately. You will find plenty of doctors (or Internal Medicine specialists prepared to act as GPs) that will discuss freely with you what they are doing and why they are doing it. Ask around at the hospital. The nurses usually know which doctors they don't like working with...

..Trevor..
 
 Re: What Questions to ask a new doctor?
Author: colin (---.syd.pacific.net.au)
Date:   07-29-02 05:01

Trevor,
Thanks for the fast response...
There is more. Gets a bit complicated here: I have had a correction to a coarcation of the aorta, and recently a replacement for the aortic valve which apparently comes with the coarctation. Valve to one side (apart from the fact that I have to be careful of infections): The coughing of blood occured only once before about three years ago: same thing, lasted about 3 days, was put on antibiotics after Xray. It was suspected by my cardiologist that maybe the aorta was intruding into the lung (Horrors, thought I), but after MRIs this was put to one side.....never to be mentioned again. At this time my 'specialist' gave me a bronchostphy (sp?) and found nothing worth telling me about.
I'll drop you a line if I may after my appointment tomorrow.
Thanks again:
Colin
 
 Re: What Questions to ask a new doctor?
Author: Eric (---.vnnyca.adelphia.net)
Date:   08-07-02 12:06

First god bless the Internet to allow people from all other the to be helped kindly by people like you ! I'am sorry for all said sorry about this stupid desease.

SORRY for my English !

Hi ! I'am Eric and I am in Belgium (Europe). I'am 33, maried with 2 young children. My father has an "Crohn's Syndrome" since he was 19.

Normally I am someone very active and very nervous. But since some times (2 or 3 months) I was very tired. I am just well when I lay down. I had very often a pain just upper my stomac (especially after having eat to much).

Begining of july I had to stop my work for 3 days because I was so tired that I could not even get up of my bed in the morning ! I also had some strange feelings in the bottom of my face. This feeling was coming and going in a few seconds time. It was so strange that I did not even talk about it to the doctor. When I got too much stressed I had some sleepy feeling at the extremeties of my left hand fingers.

So I went to see my doctor, he told me I had nothing special at a first look. My blood analyses shew too much cholesterol,tri glyceride. Too much EOSYNOPHILE (sorry I speak French). He noticed that I was really missing vitamine B12. So he told me that my problems could come from there.
He prescribed me vitaminine B12 via Injections. I got back to my work. But one week later during the night of 12 to 13 july I was got up by very heavy pain at the bottom of my chest. I had to call the doctor at 2 am ! He made me an injection for the pain. But soon in the morning I had to call an ambulance to go to the hospital because the pain was even higher than the day before.

They hospitalised me during one week because I had fever all the time (around 38.3° C). They gave me antibiotica but nothing changed. They have done "MRI" from me everywhere and finally saw something in my chest. After a "SCANNER" they tried to get a piece of a "granulome" near my lungs. But it was unsuccessfull. They had to hospitalised me again to do a sugical operation to take another piece for biopsy perposes.

They finally anounced me I have Sarcoidosis 1 week ago. During 2 weeks I really thought I had a cancer "Lymphoma".

Now I am out of work since 3 weeks and I will see a specialist for the lungs on this friday (09 augustus).

Now I'm still tired, I have some pains in the down part of my legs.

I would like you to explain me exactly which blood analyses I should do. Nobody till now has checked my vitamine D level is this so important ?

What about the food I can eat the one I should avoid. What about the sun ? Must I protect my eyes from the sun also ?

What about my work ? Should I completely avoid the stress ? I work in IT and stress is part of my job - unfortunately ... Should I stay at home for a while without doing nothing ? Or can I work again even if I'm still tired.

This desease is a little bit desapointing because not a lot of people seem to know it (even the doctors).

Any help is welcome ...
Have a nice day.
Eric.
 
 Re: What Questions to ask a new doctor?
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-07-02 12:15

Salut, Eric,
The three tests listed at the top of this page are critical, particularly the test for 1,25-dihydroxyvitamin D. I am sure you will find that yours is high. It is usually high when there is active granulatomous inflammation present.

After you get the testing done then try to keep away from sunlight and wear dark glasses until the results come back (1 week). Then you can plan what you need to do. I would recommend to stay working. IT does not make you work in the sunshine! Just don't sit by a window...

..Trevor..
 
 Re: What Questions to ask a new doctor?
Author: Dorothy S (---.roadrunner.nf.net)
Date:   08-13-02 11:30

Trevor,

Yesterday I picked up the forms at the doctor's office to get my blood tests done. When I picked it up it did not have the bacterial screen listed on the form so I told the secretary and she marked it in, however she marked in bacterial scan.

Today when I went for the tests nobody knew what the bacterial scan was. I spoke to some lab technicians they told me they didn't know what kind of tests were required. Can you please explain what kind of tests I need for a bacterial screen.

Thanks

Dorothy S
 
 Re: What Questions to ask a new doctor?
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-13-02 12:36

Dorothy,
Sorry for the confusion. Your doctor either knows what tests to ask for or he/she doesn't I am not an expert on bacterial testing

I do know that it is extremely unlikely that a lab would be able to detect bacteria in soft tissue from a serum sample, but if they do, then the info they can give you on resistance or susceptibility is extremely useful. You need to tell the lab that you are looking to identify any 'gram-negative bacteria' which might be hiding in your soft tissue, and hope there may be a few organisms in the bloodstream for them to detect. If your lab can't help you (and your Doc) to select the correct tests then you are better to skip them and focus on the D tests and ACE.

There are some really sophisticated DNA PCR tests available now, but they are expensive, and if your Lab and Doc don't know how to order and interpret them, they are likely to test for the incorrect bacteria and be unsuccesful (but still expensive).

..Trevor..
 
 Re: What Questions to ask a new doctor?
Author: Arlene De Bonis (---.64-52-68.065.ip.pgt.ebrb.net)
Date:   01-14-03 11:48

Help! Is there any association between a Mantoux Text and psorasis?
Could this test trigger this or a similar rash?
 
 Re: Eosinophile
Author: Matthias Draeger (---.pool81114.interbusiness.it)
Date:   02-13-03 06:53

I have high Eosinophile values < 25 and would like to know what could be the cause.
 
 Re: What Questions to ask a new doctor?
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   02-13-03 14:11

Arlene,

My clinical lab test book does not list psoriasis in the discussion of precautions. It does say the test should not be performed in an area of the body with acne. This is a good question for your dermatologist.

Meg
 
 Re: What Questions to ask a new doctor?
Author: sally (---.myactv.net)
Date:   04-10-03 09:05

Hello ,
after reading all this about leg pain etc.. I want to ask does any one have a dull ache in their bones. I have Sarcoid -- since 1999. My bone marrow was loaded with grantulomas. Had tremendous pain deep in my bones. Now i get a sharp dull ache every so often in different parts of my bosy. Last tiem the ache was between my wrist and elbow. it lasted 3 days and eased up. Sometimes it is my foot or shin. what is going? I wonder if the sarcoid is still active though mildly. How often does a person relapse? I'm just full of questions --- got answers? SB
 
 Re: What Questions to ask a new doctor?
Author: caroline (---.win.org)
Date:   04-10-03 20:20

hi sally,
I want to relay my problems with my bones related to sarcoidosis. it has affected me in the bones along with CNS and lung involvement.

the first 'bone' problem i encountered was with my hand. the index knuckle began with a deep dull pain. shortly after a nodule in the knuckle developed. the pain then worsened. it grew to be so painful it would wake me from a sound sleep at night.

a few months after that my right hip began to be painful. as the pain grew in intensity i feared that my hip was failing due to excessive steroids a few years ago. eventually that pain also grew to be so severe i could not get comforatble to sleep and/or would wake up in severe pain. i finally requested x-rays, which were negative for degeneration, then mri which was also negative.

both my hip pain and hand pain are completely gone after following Trevor's antibiotic/ARB protocol. the nodule is shrinking very slowly and is about one half the size. i encourage you to get the D tests, if you haven't done so and begin avoiding the sun, diet avoidance of D and the antibiotic/arb therapy.

best of luck to you, caroline
 
 Re: What Questions to ask a new doctor?
Author: Kathleen Stuart (65.121.96.---)
Date:   04-11-03 17:41

Sally -

As I take the Minocin and am affected with Herxheimer reactions, I am amazed at how many places sarcoidosis has affected!!! I primarily concentrated on my chest pain, shortness of breath and fatigue; now that I am feeling better, I notice pain in knuckles, joints, ribs, head, you name it! It is all pretty temporary, and is eased with the Benicar, but I am always amazed!!!

I'm not sure it's so much as a relapse as your vitamin D getting out of hand, allowing your bacteria to flourish - have your vitamin D metabolites tested, and that will give you better information about any recurrence of symptoms. Any questions you have - ask away!!!

Kathleen in Wyoming
 
 Re: What Questions to ask a new doctor?
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   04-11-03 19:07

Sally,


Since you report that "my bone marrow was loaded with granulomas", I suspect that your bone pain is related to those lesions in the marrow. Although an elevated level of 1,25-D can cause bone pain too.

You ask how often a person can relapse. Do you think that your sarcoidosis was in remission? Sarcoidosis symptoms can vary in intensity depending on a variety of factors.

The best way to tell what is going on is to have your D-metabolites and serum ACE tested. This, along with your symptoms, will give you a good indication of the amount of inflammation in your body.

You can begin to help yourself now by avoiding all sources of Vitamin D and sunlight/daylight. Many have gotten significant relief just by making these slightly inconvenient changes in their lifestyle.

I'm glad you've got lots of questions. We'll do everything we can to answer them.

Meg
 
 Re: What Questions to ask a new doctor?
Author: Ged (---.in-addr.btopenworld.com)
Date:   04-20-03 10:44

Hi

Have recently been diagnosed with SARC (Jan 2003), after lymph node biopsy and being told it was lymphoma. Am currently going through the 'blank stare/ general answers to questions other then those I've asked' period of my treatment. Symptoms are memory loss, muscle pain, some joint pain, intensified grumpiness, intense fatigue, shortness of breath, badly swollen lymph glands, weight loss. I cannot get a stright answer to a straight question from any of the 'experts'. I could with some preliminary questions(and the answers I should hear!) from anyone who can help. I know little about the disease and have found a lot of the answers above require a far more in-depth medical knowledge than I possess. None of medical fraternity have mentioned anything about vitamin D levels, yet it seems to be important, is this common in the UK?

I'd also like to know if my job of managing a busy city centre pub is likely to cause me future problems. I've already discovered the joys of collapsing due to over exertion/ loss of breath which led to a trip to A&E and 10 days off. Mind you, at least my area manager now knows that I'm not swinging the lead!

Any pointers would be of great help and would be greatly appreciated

Thanks

Ged
 
 Re: What Questions to ask a new doctor?
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-20-03 12:10

Ged,
Read the tutorials at the top left of this page, and as much as you can of the papers at the top right.

There are a few consultants in the UK who understand the bacterial cause of sarcoidosis, DuBois is one, he wrote "microbes behaving in a non-infectious fashion in a genetically predisposed individual trigger .. sarcoidosis"

But his attempts at antibiotic treatment were apparently not successful presumably because he did not isolate the biochemical hormones causing this disease as we have done and realize the importance of ARBs. The last news I had is that he is refusing patients antibiotic treatment at this time.

A lot of folks would focus on the smoky atmosphere of the pub. I will tell you it will be better if you could get a non-smoking pub environment to work in, but I currently believe that the smoke is only an irritant, and not the underlying cause of the sarcoid inflammation. The cause is CWD bacteria. The cure is killing the bacteria.

..Trevor..
 
 Re: What Questions to ask a new doctor?
Author: Marypat (---.proxy.aol.com)
Date:   06-14-03 07:13

Hi! My question-is a low B12 level something that frequently shows up with sarcoid patients? Back in 1988 when I was having [IMO] a horrendous period of wierd sarc symptoms that htest did come back low.

Also my lab results were extremely close [2 points below] lupus. is this also usual?

Thanks.
Marypat
 
 Re: What Questions to ask a new doctor?
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-14-03 07:54

Hi MaryPat,

I'm not aware of any significance between a low B12 level and sarcoidosis. Have you had your 25-D and 1,25-D metabolites checked? This is the test that will give you the most important information.

I'm assuming that you are talking about the ANA test when you refer to lupus. A borderline low level is not known to be common to sarcoidosis patients. But since both these diseases share a similar biochemistry, treatment with ARBs and antibiotics is appropriate.

Meg
 
 Re: What Questions to ask a new doctor?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-14-03 08:48

Mary,

Much of the information about B-12 deficiency doesn't mention sarcoidosis, but sarc is usually thought of as a rare disease - not worth mentioning. However, localized inflammation or bacterial infection (such as Helicobacter pylori) in the stomach or small intestine can result in B-12 not being absorbed from food because of limited secretions of stomach acid to break down B-12 from protein in food. Therefore, it's not surprising that you had this test result when you were very ill from sarcoidosis. By the way, a deficiency in B-12 may also increase the blood level of homocysteine, an amino acid normally found in blood.

This study suggests H. pylori in dental plaque must be controlled to prevent recurrent stomach infections and to properly control the B-12 deficiency associated with this infection.

The important thing to do is to treat the known underlying cause of your inflammation: sarcoidosis. I would also check with my doctor about an evaluation for H. pylori.

Belinda

 
 Re: What Questions to ask a new doctor?
Author: Marypat (---.proxy.aol.com)
Date:   06-14-03 11:13

Thanks Belinda and Meg.
Marypat
 
 Re: What Questions to ask a new doctor?
Author: diana wingerd (---.ssa.gov)
Date:   02-26-04 09:59

Trevor,

I have been seeing Drs. at Johns Hopkins hospital in Maryland. I found out in 2000 I had sarcoid from a bronchoscopy. Lung Dr put me on steriods. Had lung function test a couple times a year. In 2001 I got worse hospital stay said sarc had went to my heart. Had a catertherization done of my heart on blockages they said sarc. I had a pacemaker put in 2002. I am trying to get of the steriods down to 10 mg. I go back to Hopkins to see Dr. Moller. I want to try your treatment of micocycline and benicar. My friend Sue has been following your treament and says that she is getting better. What should I do to start your treament for sarc. I will have an echo done March 22 to make sure the ejection fraction is OK. Please advise. I am tired of taking steriods.

Diana
 
 Re: What Questions to ask a new doctor?
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-26-04 10:07

Diana,
I have good news, and I have bad news.

First the good news. Dr Moller recently wrote a paper where he argued that Sarcoidosis is caused by bacteria.

Now the bad news. He reportedly still refuses to give his patients antibiotics, even though one of the patients at the Johns Hopkins clinic, 'Wendy', overcome her cardiac sarc within 6 months while on the SarcInfo protocol (which was prescribed by her primary physician)(confirmed by JH MRI scans). So Johns Hopkins has seen our success, and turned a blind eye to it. I cannot tell you why. You will have to ask Dr Moller that question.

..Trevor..
 
 Re: What Questions to ask a new doctor?
Author: dianawingerd (---.ssa.gov)
Date:   02-26-04 10:44

Trevor,
I will try to get them from my primary care Dr., he is pretty reasonable and usually open to new things, if Moller says no. Just tell me what the next step is. I take the following medications:
avapro 150 foxamax 70 glucovance 5/500 digoxin .125 spironolectone 25 mg furosemide 40mg predisone 10mg magneisum 250. Would your treatment have any reactions to with my current medications? When you said Wendy has overcome her cardiac sarc what do you mean. I have been told lung and heart damage can not be reversed.
 
 Re: What Questions to ask a new doctor?
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-26-04 11:18

Diana,
I am sure Dr Moller would feel the same as I. There are some powerful cardiac drugs in that list. I have no idea what the effect of changing them or supplementing them may be. You will have to talk with your Cardiac physician.

Some general comments. A sarc patient taking Fosamax is like trying to plug a hole in the Hoover Dam with your finger - maybe it will work, probably not. But it is far more likely that the calcium it creates will be deposited into your kidneys and soft tissue than into the bone, where you want it to go. While your 1,25-D remains high (and you need that measured as job#1) then there is no hope of strengthening your skeleton.

Spironolectone is a diuretic. It is not a good idea for anybody with weak kidneys (which includes ALL sarc patients (especially those with Diabetes)) to be using diuretics. ARBs are the preferable hypotensive agent in Sarc (ARBs like Benicar).

You are going to have to talk with your Docs. Since you are already on Avapro, one of the less effective ARBs, Doc will most probably be happy to change that to Benicar (Olmesartan Medoxomil). You need a minimum dose of 40mg every 8 hours. Maybe the diuretic will not be necessary after the Benicar kicks in. Monitor your own BP and keep track of any changes. Call Doc and see if he will change the Avapro to the 40mg every 8 hour dosage of Benicar without an appointment. You might strike it lucky...

..Trevor..
 
 Re: What Questions to ask a new doctor?
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-26-04 13:36

Diana said "I have been told lung and heart damage can not be reversed"

Well, Diana, the loss of both heart and lung function is being reversed by the SarcInfo therapies. One of our early 'graduates', 'Kirk', was on 24/7 oxygen and he now moves freely around during the day without oxygen, using it only while sleeping. In June 2003 he posted:
" I forgot to tell you that last Saturday I was looking at some model houses and after going up 2 flights of stairs and was looking around I suddenly realized what I had done and I wasn't out of breath. I had to call 3 people when I got back in the car to tell them about it. "

I myself used to be winded by a single flight of stairs - but no more.

PFTs usually improve within 3 months of starting Minocycline and ARB therapy.

As I mentioned in my reply above, cardiac sarc can also be reversed, in some cases fully reversed, although the damage done by medications and surgeries are usually not reversible.

..Trevor..
 
 Re: What Questions to ask a new doctor?
Author: Beth (---.129.51.123.Dial1Atlanta1.Level3.net)
Date:   12-12-04 17:26

Can anyone tell me how to find a Holisnistic Doctor? I have had so many doctors but I have never had a Holinistic Doctor. I wold also like to know more about this new treatment with Minocycline/ and Benicar...info anyone.I came out of remission 6 years ago and have gone downhill every since, I have tried to find a good doctor as we moved from Calf where i had a great doctor in Los Angeles. Dr. O.P Sharma @ USC.Pulmonary Clinic, if any of you are in that area try him he is great and will always try to help you if he is still there and practicing.
 
 Re: What Questions to ask a new doctor?
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   12-12-04 22:29

Hi Beth,

Here is information on how to find a holistic doctor. I believe we have patients on the Marshall Protocol who are being helped by homeopathic doctors. They tend to be more open-minded about new medical treatments.

I am, however, puzzled by your statement that Dr. Om Sharma is a great doctor right after you said you had been going downhill for six years. My definition of a great doctor is one who listens to his patients, keeps an open mind about new medical discoveries and is willing to learn about new medical treatments. The reports I've gotten regarding Dr. Sharma is that he refused to read Dr. Marshall's papers, refused to return Dr. Marshall's emails and refused to help every patient who begged him to order the Marshall Protocol.

There are over 200 sarcoidosis patients on the MP and all are either responding, improving or in remission. Dr. Sharma has been informed of these incredible results, yet steadfastly denies that there is any merit to this safe, effective treatment. He is considered the preeminent sarcoidosis expert in the world and has widespread influence over the pulmonologists whom we are trying to reach. His refusal to explore this promising new option for desperately ill patients has undoubtedly had a huge negative impact on the average sarcoidosis patient's chance of recovery.

Best,

Meg
 
 Re: What Questions to ask a new doctor?
Author: jill hopkins (---.server.ntli.net)
Date:   02-25-05 06:10

i have sarcoidosis for 2 years it has scarred my lungs i have been on hige dose strecoids for 2 years of and on 4 weeks a go they told me i have fibromyalgia so they cut me down on my strecoids but i could not breath so they put me on a pump any advice would help thank you
 
 Re: What Questions to ask a new doctor?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   02-25-05 06:44

Jill,

Welcome to SarcInfo.com. You will need to spend some time reading here. One thing you will want to read, in addition to the patient tutorials at the top of the page, are the reference articles at the bottom of the page such as this one.

Doctors use systemic steroids to treat sarcoidosis in an attempt to alleviate symptoms because they don't know what else to do and because they have been taught this is the best treatment available. If you have been on high-dose steroids for two years and it hasn't helped, it may be that your doctors now have had to realize there is no point in exposing you to further risks of the damage that systemic steriods can inflict on the body.

Possible side effects from oral cortiocosteroids (prednisone) include:
- fluid retention and increase in weight
- thinning/softening of bones (osteoporosis)
- diabetes
- indigestion or worsening of peptic ulcer
- changes in mood
- impaired healing
- stretch marks
- skin thinning
- bruising
- increased facial hair
- increased risk of infection
- muscle weakness
- eye cataracts
These side effect are dose- and duration-dependent.

Some of the questions you may ask your doctors are:
1. Whether you are suffering any of the above treatment-induced diseases or damage as a result of taking high-dose steroids for two years.
2. Whether they are familar with reports that corticosteroids do not halt the advancement of sarcoidosis.
3. Whether they realize that withdrawal from corticosteroids causes relapse of sarcoid symptoms that may be worse than the original symptoms.

Fibromyalgia is a name given to a list of symptoms that are often simply part of sarcoidosis. These go away when other symptoms of sarcoidosis resolve, in response to effective treatment. The only effective treatment we are familar with is the one we discuss here, the Marshall Protocol.

Belinda

*MODERATOR* Dx: FM 80's, sarcoidosis '01; Lung, skin, spleen, liver and neuro. Refused Prednisone. 7/02 1,25-D 61.1, 25-D 14.3. MP since '02 PhaseIII with symptoms gone, slight Herx. Improved PFTs, CTs, X-ray, energy and stamina. I walk 3-4 mi daily now
 
 Choughing and chest pain
Author: Virginia (---.142.36.6.Dial1.Chicago1.Level3.net)
Date:   07-16-05 15:26

Hi
I'm getting over a bad summer cold.I've been having real bad coughing spells to where my chest hurts so bad I can't stand it. My question to you my coughing can it do any damage to my chest

Thank you for your time
Virginia
 
 Re: Choughing and chest pain
Author: Meg (---.dhcp.eucl.wi.charter.com)
Date:   07-16-05 15:43

Hi Virginia,

Welcome to SarcInfo. In order to answer your question, we need some background information. I've sent you an email letter about SarcInfo and how to fill out a signature line.

Best,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
 
 Re: What Questions to ask a new doctor?
Author: Dorothy (---.flightsafety.com)
Date:   08-04-05 10:00

My Mother in-law who is caucasian was Diagnosed with Sarcoidosis 2 days ago she is 71 years old and I was doing reseach on who gets Sarcoidosis and I found that it mostly occurs in adults between the ages of 20 and 40.
since she way past that age, what can we expect for someone of this age
being diagnosoed with this disease so late in life?

She went to see the Doctor because she was having painful arthritis in her ankles, but she have had arthritis in her hands for years.

Any advice will be helpful

Thank you
 
 Re: What Questions to ask a new doctor?
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   08-04-05 12:10

Hi Dorothy,

Welcome to SarcInfo! I am sorry to hear your mother-in-law is in pain and no, it is never too late to regain health. As long as people have the ability to fully understand and incorporate the Marshall Protocol guidelines into their lives, they will be successful.

Many misconceptions surround sarcoidosis due to the inaccuracies of the information put forth by the NHLBI (National Health Lung and Blood Institute) which is under the National Institutes of Health. You may wish to read Sarcoidosis, Lessons Learned From the ACCESS Study and NIH Study Shows that Sarcoidosis Does Not Go Away.

Your mother-in-law has probably had symptoms of TH1 disease for a long time and she nor her doctor attributed those symptoms to sarcoidosis. Here is a list of the symptoms of Hypervitaminosis D: Hypervitaminosis D Symptoms.

Your mother-in-law can begin now to help herself by avoiding ALL sources of Vitamin D. Eliminate food items contianing D, discontinue supplements with D and protect exposed skin from sun exposure. Please have her order NOir's to protect her eyes both inside and out of doors. There is further information regarding eye protection here: discussion of eye protection.

In addition to the above, I suggest she have her D metabolites tested so that she has a baseline to share with us. That way we can better help her. How does Doctor Test My D Metabolites.

I would also like to remind her not to accept the results of the D metabolites as "Normal". Please have her call and obtain your actual numbers, both 1,25 D and 25 D. Then, post them here for interpretation.

At our sister site Marshall Protocol you may find advice on approaching a physician here:A Member offers Suggestions to Get Your Doctor on Board with the Marshall Protocol.

I hope this helps you. I will be sending more information to your email Inbox.

Sue Caroline

Sx.95, iritis 96. Pred. to 3-01. Pred., IV Medrol, MTX,neoral end 02, Dx. Neuro w/Cardiac sx, severe hip and hand pain, M-9-02, Benicar 12-02. MP-I Jan. 03. 1,25 D 58. Cardiac, & joint pain resolved w/MP-1. MP-II Feb. 04. Oct. 04, 25D=10, 125-D=34
 
 Re: What Questions to ask a new doctor?
Author: martin fennell (---.bas003.bmt.esat.net)
Date:   08-27-05 05:13

Hi i am visting my doctor on monday. to find out what getting the three recommonded tests done.
I am also going to ask him to put me on benicar.
Is there a recommonded dosage.
Is there anything elsde I should ask him, or ask him to put me on.?
M

itchiness,fatigue, lack of strength, vertigo, dizzyness, urination problems,cold sweats
 
 Re: What Questions to ask a new doctor?
Author: Lottie (---.proxy.aol.com)
Date:   08-27-05 05:40

Martin,

You need to do a lot more reading.

The information for the medications in phase one, is all in the phase one guideline. The Benicar dosage is 40mg at least every eight hours, preferably every six hours.

You will be adding minocycline in low doses of 25mg every other day, and will eventually need to increase it by 25mg every other day to a maximum of 100mg every other day. You will need to judge by the herxheimer, when you are ready to increase each dosage.

The Marshall Protocol -- simple explanations

SAFETY WARNING

PHASE ONE GUIDELINE

The following forums are required reading before you begin the Marshall Protocol:

ESSENTIAL INFO ABOUT THE MP

Marshall Protocol FAQs

You are probably going to need to convince your doctor to help you with the MP. Some ideas in helping that go smoothly are here…

SUGGESTIONS TO GET YOUR DOCTOR ON BOARD WITH THE MP

Have you started to avoid sunlight, and bright lights? That is as important as avoiding vitamin D in food. You shouldn’t start the Benicar until you have the NoIR sunglasses, or your body may have additional trouble adjusting to the Benicar.

PROTECTING YOUR EYES

THE EFFECT OF SUNLIGHT/DAYLIGHT AND BRIGHT LIGHTS

AVOIDING SUNLIGHT and BRIGHT LIGHTS

INCIDENT RADIATION TUTORIAL

TESTIMONIALS TO THE NEED TO AVOID LIGHT

Happy reading!! Let us know if you have questions about what you read

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: What Questions to ask a new doctor?
Author: martin fennell (---.bas003.bmt.esat.net)
Date:   08-27-05 06:48

oh, dear.
I don't really know where I'm going to go with this.
The avoiding vitamin d in food is fine.
It's the bright lights, sunlight.thing that makes me hesitate the most.
I'm more than prepared to wear a hat, and long sleeves. out of doors and when i'm indoors on my own.
and i can always stick my hands in my pockets, during the warm weather, and wear gloves during winter..
but it's wearing the things in doors in the presence of others that make hestita.
Now, i live on my own, but i do go out shopping, and i visit my parents house a couple of days.
I've seen that wearing the glasses, and taking them off, cvan lead to unpleasent effects.
So does it matter, how long the glasses are off for.

Now, it seems that everybody else or at least those whose correspondence I have read are a lot iller than me.
I can walk, run, dance around my room.
by biggest recurring problem is dizzyness, fatigue, weakness.

I have a part time job, delivering catalogues. I have taken to wearing a hat, and an ordinaqry pair of sunglasses, when outside.
So I don't really know how i would fare if called onto do heavy work, such as lifting cement blocks. I have a feeling I could do it, but would constantly be feeling exhausted.

I am able to go out and play tennis. but very seldom will have a game where I don't feel dizzy, and/or weak/fatigued.

M<y doctor told me that I would always have this, but it would not get any worse.
I guess because of my job, I walk about 3 or 4 miles in a week.
Sorry to be so awkward.
M

itchiness,fatigue, lack of strength, vertigo, dizzyness, urination problems,cold sweats
 
 Re: What Questions to ask a new doctor?
Author: Meg (---.dhcp.eucl.wi.charter.com)
Date:   08-27-05 09:45

Martin,

Your doctor is right that you will always have sarcoidosis but he is wrong in telling you that it will not get any worse. If you do not have confidence that you are sick enough to cure your sarcoidosis, rather than manage its symptoms, then you will not be able to convince your doctor to help you get well with the MP.

The Marshall Protocol works but it isn't easy and it isn't a quick fix. Please see:

How do I know if I have the 'right stuff' to be successful with the Marshall Protocol?

You can always wait a few years until you get worse and the Marshall Protocol is recognized as an effective treatment by all doctors but you will have lost precious time recovering.

Best,

Meg
 
 Re: What Questions to ask a new doctor?
Author: martin fennell (---.bas003.bmt.esat.net)
Date:   08-27-05 10:46

Thanks Meg.
I guess I'm not made of the right stuff.
primarly because of
"The willingness to adapt your lifestyle to avoid sun/lights, including looking unconventional because you are covered from head to toe and wearing NoIR sunglasses indoors and out."
I would have to give a negative answer to that.
Still i am seeing my doctor on monday.
I'll ask him (if I remember) why he says my sarcoidisis won't get any worse.
I must also ask him how long I've had had it.
I want to get these blood tests done too.
In the meantime, I have cut down on my vitamin D intake.
I mean by that, that I am not buying any of the foods not to eat, and checking labels.

Now at the moment, I'm taking sinequan for itchiness
eltroxon for thyroid, and sal palmetto for urination problems.
ie going to the toilet a lot during the night.

This is the second time to take sal palmetto.
The first time I was taking them and pumpkin seeds.
I'm not sure if I was going to the toilet less, but I did feel better.
Once I stopped, i began getting dizzy again.
Actually the dizzyness seemed to be worse.
So i went back on both again.
But after reading "foods safe and not safe to eat" I have thrown out the pumpkin seeds, but am still taking the sal palmotto. It must be around
two weeks since I started taking it for the second time.
But anyway this time, I haven't got that buzz, (aks feeling normal) sensation, i got the first time.
But on wednesday night, and thursday night, my visits to the toilet were less frequent. But last night I went pretty frequently.
I had been drinking diet 7up, and was wondering if that might cause one to urinate more often.
Finally, would there be vitamin A in milk protein ie if milk protein is part of a food's ingredients.
M

itchiness,fatigue, lack of strength, vertigo, dizzyness, urination problems,cold sweats
 
 Re: What Questions to ask a new doctor?
Author: Julia (---.access.as9105.com)
Date:   08-27-05 12:39

Martin

Why not give it a try for two weeks - staying out of light and covering up? You might just feel so much better it will give you the motivation to continue.

Diet drinks contain artificial sweeteners, which don't do your health any favours.

You say that others here seem to be much more ill than you are. That's how I felt when I first found Sarcinfo. But my endocrinologist informed me my kidneys were in danger of packing up - you can be suffering from organ damage without realising it. My kidneys began to recover just with cutting out light and vit D, even before I started the medications.

It's not worth waiting to see which bit of you cracks up first!

Julia

Belfast, UK. Sarc dx Spring '03. No D tests. Light/Vit D restriction 8/03, Mino 2/04, +Benicar 5/04. Phase 2 from 8/04, Phase 3 from 11/04. Benicar 4x40.
 
 Re: What Questions to ask a new doctor?
Author: Meg (---.dhcp.eucl.wi.charter.com)
Date:   08-27-05 14:00

Martin,

Why do you ask, " would there be vitamin A in milk protein ie if milk protein is part of a food's ingredients"? Please see our revised list of:

FOODS TO AVOID

Best,

Meg
 
 Re: What Questions to ask a new doctor?
Author: martin fennell (---.bas003.bmt.esat.net)
Date:   08-27-05 14:38

I saw milk protein listed as an ingedient of some food i was looking
at today.. i wondered if vitamin D (sorry not A) would be part of that protein..
M

itchiness,fatigue, lack of strength, vertigo, dizzyness, urination problems,cold sweats
 
 Re: What Questions to ask a new doctor?
Author: Meg (---.dhcp.eucl.wi.charter.com)
Date:   08-27-05 14:57

Martin,

Vitamin D is a fat soluble Vitamin. There will be some in the milk fat. Our list says nothing about milk protein. I think you are making the dietary restrictions of the MP much harder than they need to be.

When you look at labels look for the words Vitamin D and folic acid. Check dairy products for Vitamin A greater than 6%.

We try to keep things as simple as possible and there is no need to worry if you are following the suggestions in the list of foods to avoid.

Best,

Meg
 
 Re: What Questions to ask a new doctor?
Author: martin fennell (---.bas003.bmt.esat.net)
Date:   08-27-05 14:57

Hi Julia.
Before going on any further, than i have already, I'm going to see about those blood tests. On monday I have an appointment with my doctor, at 4pm. He's a pretty nice guy, and I'll just have a chat with him about sarc info, the marshall plan etc etc.
M

itchiness,fatigue, lack of strength, vertigo, dizzyness, urination problems,cold sweats
 
 Re: What Questions to ask a new doctor?
Author: Julia (---.access.as9105.com)
Date:   08-27-05 15:24

Martin,

After you've seen the doc let me know if he's willing to read the Papers for Physicians and I'll get printing. If he's willing to look at the website, better still. Take him the addresses of this site (http://sarcinfo.com) and www.marshallprotocol.com, where there's a separate forum for doctors.

Don't give up!
Slainte
Julia

Belfast, UK. Sarc dx Spring '03. No D tests. Light/Vit D restriction 8/03, Mino 2/04, +Benicar 5/04. Phase 2 from 8/04, Phase 3 from 11/04. Benicar 4x40.
 
 Re: What Questions to ask a new doctor?
Author: martin fennell (---.bas003.bmt.esat.net)
Date:   08-27-05 15:40

Thanks Meg.
You are very good to answer my questions, even though it looks like I won't be going on the mp. I hope you will still let me stay on here and ask questions. I guess I'm one of those people who need very exact answers. I'm sure I'm testing your patience.
so basically avoid all foods mentioned in FOODS TO AVOID list.
for ice creams and yogurts go for low fat ones, making sure they don't contain eggs or butter or vitamin D.
for mineral drinks, i am better off avoiding the diet ones.
Well I'm better off avoiding them alltogether, but if i need one, go for one that doesn't contain asperatine (excuse spelling)
M

itchiness,fatigue, lack of strength, vertigo, dizzyness, urination problems,cold sweats
 
 Re: What Questions to ask a new doctor?
Author: martin fennell (---.bas003.bmt.esat.net)
Date:   08-27-05 15:45

Hi Julia
Well i actually did leave him the adress's you mentioned.
I will ak him if he's willing to look at the papers for [psychicians.
M

itchiness,fatigue, lack of strength, vertigo, dizzyness, urination problems,cold sweats
 
 Re: What Questions to ask a new doctor?
Author: Meg (---.dhcp.eucl.wi.charter.com)
Date:   08-27-05 15:52

Martin,

There are many opinions about good nutrition. Those that we recommend are explained in our tutorials and FAQs. All others are the opinions of other members and not officially recommended by this website. You will have to use your own judgement about which outside opinions to follow.

The website moderators are Lottie, Belinda, Margo, myself and, of course, Dr. Marshall. All posts are read by the moderators and anything misleading or false is either deleted or corrected. However, the messages that are more than a year old may contain outdated information.

We encourage all members to read the websites regularly to keep current on the latest developments as we continue our research about Th1 inflammatory diseases. Our expertise is explaining Th1 inflammation and helping our members implement the Marshall Protocol. We'll be happy to answer any questions that pertain to helping you recover from sarcoidosis.

Best,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
 
 Re: What Questions to ask a new doctor?
Author: martin fennell (---.bas003.bmt.esat.net)
Date:   08-27-05 16:00

Thanks Meg, I think I'll leave any other questions until after I get blood test results. Well here's hoping that that part will be able to go ahead.
M

itchiness,fatigue, lack of strength, vertigo, dizzyness, urination problems,cold sweats
 
 Re: What Questions to ask a new doctor?
Author: martin fennell (---.bas003.bmt.esat.net)
Date:   08-28-05 04:42

Well, one more question.
My biggest problem is the dizzyness. Presuming it is caused by the sarcoidisis, is there anything yI could ask my doctor for, that might help.
M

itchiness,fatigue, lack of strength, vertigo, dizzyness, urination problems,cold sweats
 
 Re: What Questions to ask a new doctor?
Author: Lottie (---.proxy.aol.com)
Date:   08-28-05 05:35

Martin,

The dizziness that you are experiencing, is very likely caused by the Sarcoidosis.

If you look at the list at the thread “Hypervitaminosis D Symptoms”, you will find dizziness among a large number of symptoms of Hypervitaminosis D. It is one of the symptoms that I and many other people have mentioned.

Hypervitaminosis D Symptoms

There are also many other symptoms that you may recognize as some of yours. I developed many of them as my Sarcoid worsened.

Hypervitaminosis D (too much vitamin D hormone) is caused by the 1,25D that is produced by the bacteria, and also by our body, especially when exposed to sunlight and bright lights. That is the reason that it is so important to protect ourselves from sunlight, by wearing protective clothing, and the NoIR sunglasses.

A high level of 1,25D will also reduce your body’s ability to kill the bacteria that are making you sick. The Sarcoidosis will only get worse if you don’t kill the bacteria. And since the bacteria have learned to hide from the immune system, without the MP, it won’t be able to kill them all. They have actually learned to hide within the immune system itself.

If you doctor suggests Prednisone, or another immunosupressant, don’t take it. It may allow you to feel better for a while, but the bacteria will continue to grow! The inflammation in my heart worsened while I was on Prednisone.

Also, don’t forget that you won’t know that there is damage to an organ until you start to have symptoms. For instance, in the heart… palpitations, rapid pulse, a pulse too slow, or “skipped beats” can indicate that there is Sarcoidosis involvement in the heart.

I hope you will consider the consequences of not following the MP, as you decide what you want to do about your health.

Please let us know how things go with the doctor.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: What Questions to ask a new doctor?
Author: Julia (---.access.as9105.com)
Date:   08-28-05 06:29

Martin,

Oops, I should have made it clear that my comment about diet drinks was just my opinion and not an official MP recommendation.

Moderators,

Sorry for that mistake

Julia

Belfast, UK. Sarc dx Spring '03. No D tests. Light/Vit D restriction 8/03, Mino 2/04, +Benicar 5/04. Phase 2 from 8/04, Phase 3 from 11/04. Benicar 4x40.
 
 Re: What Questions to ask a new doctor?
Author: Meg (---.dhcp.eucl.wi.charter.com)
Date:   08-28-05 07:00

Martin,

In my experience, palliative medicine is seldom effective in treating dizziness. IMO, this symptom of your sarcoidosis inflammation will only resolve with the MP.

Best,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
 
 Re: What Questions to ask a new doctor?
Author: Meg (---.dhcp.eucl.wi.charter.com)
Date:   08-28-05 07:02

Julia,

You are right about diet drinks in that many contain aspartame, an artificial sweetener that has many reports of toxicity and is to be avoided. It is listed in:

FOODS TO AVOID

Best,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
 
 Re: What Questions to ask a new doctor?
Author: martin fennell (---.bas502.dsl.esat.net)
Date:   08-28-05 14:27

Thanks everybody.
M

itchiness,fatigue, lack of strength, vertigo, dizzyness, urination problems,cold sweats
 
 Re: What Questions to ask a new doctor?
Author: martin fennell (---.bas504.dsl.esat.net)
Date:   08-29-05 13:18

I went to see my doctor today.
unfortunately I lost the piece of paper, on which I had written stuff to ask or tell him about.
But I was able to remember quite a bit.
Here are some of the things he told me.
I was first diagnosed with sarcodoisis 1n 1992
I gave him the website adress. Sorry, I forgot about the Marshall one.
He is willing to look at the papers for psychicians.
I will be able to get the vitamin D blood tests done on thursday morning.
Without any prompting from me, he knew that the blood would have to be frozen.
NowI couldn't remember the names of the three tests to be done.
But I said something like one is called Dissomething and then it has the word Vitamin d at the end of it..
Anyway he said, what was probably the right word, and mentioned two words as well.
Anyway I have a piece of paper in front of me listing the blood tests I'm getting done.
I can't read all the words, but I'll try give you an ideaq.

VIT D levels
ACE
the next one looks like LFT
The next one looks like ALH RHUR
the next one looks like Newie
Calcium
the next one looks like tsh
the last two two looks like lympid and glans.
Anyway I'll write down the names of the three recommonded blood tests for vit D levels, just to make sure that I do get those done..
M
just

itchiness,fatigue, lack of strength, vertigo, dizzyness, urination problems,cold sweats
 
 Re: What Questions to ask a new doctor?
Author: martin fennell (---.bas504.dsl.esat.net)
Date:   08-29-05 13:20

there is another one the list too. it could be luo.
M

itchiness,fatigue, lack of strength, vertigo, dizzyness, urination problems,cold sweats
 
 Re: What Questions to ask a new doctor?
Author: martin fennell (---.bas504.dsl.esat.net)
Date:   08-29-05 13:34

i found the name of two of the tests to be done
1,25 dihydroxyvitamin-d
and 25 hydroxyvitamin-d.
Can someone please supply me with the name of the third one.
M

itchiness,fatigue, lack of strength, vertigo, dizzyness, urination problems,cold sweats
 
 Re: What Questions to ask a new doctor?
Author: Meg (---.dhcp.eucl.wi.charter.com)
Date:   08-29-05 19:36

Hi martin,

I'm sorry you had trouble at the doctors visit. I think you need to add 'memory loss' to your list of symptoms.

Be sure to post the exact numbers when you get the D tests back and keep reading the tutorials and FAQS on both the websites. It takes time for all this info to sink in.

Best,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
 
 Re: What Questions to ask a new doctor?
Author: Lottie (---.proxy.aol.com)
Date:   08-29-05 21:08

Martin,

The “D” tests you have listed there, are the main tests that we need…
From, “BASIC BLOOD TESTS FOR THE MARSHALL PROTOCOL”,

The D METABOLITES consist of two tests:

1,25 dihydroxyvitamin -D
25 hydroxyvitamin - D

Please make sure that both tests are ordered, not just the commonly done 25-D. Be sure that the sample for the very sensitive 1,25-D assay is sent to the lab frozen.

The other inflammatory markers (Tests) are as follows. They don’t tell us as much as the “D’s” do.

ACE or angiotensin-converting enzyme

C Reactive Protein

SED rate

Hope that helps you.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: What Questions to ask a new doctor?
Author: martin fennell (---.bas502.dsl.esat.net)
Date:   08-30-05 14:55

Sure will, lottie and Meg.
Wow, Meg made a joke. Is that a common occurrence )
M

itchiness,fatigue, lack of strength, vertigo, dizzyness, urination problems,cold sweats
 
 Re: What Questions to ask a new doctor?
Author: Lottie (---.proxy.aol.com)
Date:   08-30-05 19:22

Martin,

I’m guessing that you think that Meg was kidding about the memory loss? If you do, I can tell you from personal experience she wasn’t kidding at all!

If you look again, and carefully at the list of symptoms here…
Hypervitaminosis-D Symptoms

You will notice that there are a lot of problems that involve mental difficulties. For instance…

Irritability
Mood or mental changes
Memory loss
Inability to concentrate

I hope that if you haven’t, you will go to that thread on Hypervitaminosis D, and read it very carefully. Most of us have many of the symptoms that are listed there. And, although a person may not have many of them at one point in their illness, they will usually start showing up as a Sarcoidosis patient becomes more ill with more bacteria.

This is a very serious disease that can lead to a person’s early death if it isn’t treated properly. Yes, we all do kid and joke on occasion. But we know how serious this illness is, and want everyone to realize that they have a chance to be well, instead of worse.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: What Questions to ask a new doctor?
Author: martin fennell (---.bas502.dsl.esat.net)
Date:   09-01-05 11:06

Well i think she was kidding in my case.
There was a smiley beside Meg's answer.
But I do know memory loss is a sympton.
Okay, unfortunately things didn't go as expected with the blood tests.
They can't do them in carlow.
There is a place in another part of Ireland , that does them. So hoipefully I'll be able to get them done.there.
But I don't know when.
I'll keep you posted
M

itchiness,fatigue, lack of strength, vertigo, dizzyness, urination problems,cold sweats
 
 Re: What Questions to ask a new doctor?
Author: Lottie (---.proxy.aol.com)
Date:   09-01-05 19:28

Martin,

I'm sorry that you couldn't get the tests done. I'm glad that you've learned of a place that does do them, and hope that you don't have too much of a problem getting there.

Do keep us updated

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury