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 The material here provides useful background, but much of it is now out-of-date.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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 Re: Sarc Targets Non-Smokers?
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-02-02 16:44

Debbie,
This myth about whether smokers and non-smokers are more likely to "get" sarcoidosis is an excellent example of exactly what is wrong with a lot of medical research these days.

Too much medical research is based on what is called "epidemiological" studies. Instead of trying to get an understanding of what endocrinological factors are behind a disease, the epidemiologist gathers together a lot of statistical data from a census, or from a hospital's records, and tries to make inferences based (usually) purely on the statistical (epidemiological) data.

I, too, was trained in statistics. But my professor introduced the course with a book called "How to Lie with Statistics". Effectively it showed the many ways in which statistics can be misused in order to prove one's own point. We were taught to make sure that we understood the problem before beginning to draw inferences from the data.

Now I am not accusing the medical profession of trying to prove something that is false. They are not. They are well intentioned. It's just that they try to draw statistical inference without having all the possible factors confounded (a mathematical term for 'removed') from their data.

For example, for decades we have had paper after paper published saying that steroids are good for sarcoid patients, that steroids improve things. But when those studies are evaluated by expert epidemilogists, such as the Oxford study, or this more recent review for JAMA, they are found to have forgotten about one or other important factor that might have totally changed their conclusions.

In fact, of the 150 epidemiological studies of prednisone treatment that were subjected to review, only 8 provided usable data. How many patients suffered following the recommendations of the other 142 ?

Another study purported to show that there was an "Increased risk for cancer following sarcoidosis". I looked at this study myself, and realized that the researchers had made no attempt to distinguish patients who might have been treated with Methotrexate or Steroids (or indeed any drugs likely to act as carcinogens) from those people who were not sick and who had not been exposed to medication. I wrote to the main author, Dr Askling, questioning why they had not thought this to be significant. His response was that they "didn't have that data available to them". So why bother to do the study at all? Or why not confess this problem with the study results? But there were no disclaimers, just a headline which would unecessarily scare many sarcoid patients and their doctors

So I finally get to your question about smokers and sarcoid. Sorry it took so long, but I had to get that off my chest
Well, there are two big fundamental problems with the smoking studies that I have seen. They haven't considered sarc as a lifelong pre-disposition (many patients can't be said to 'get' sarc) and they have not considered the possibilty that when sarc patients were offered cigarettes they found them to be especially systemically irritating, and therefore never took up the habit.

Other patients seem to develop the sarc genes later in life, in much the same way that gene mutations that allow cancer to develop. Maybe these patients are more frequently smokers, and represent a different subpopulation? Until Doctors recognise these confounding factors we will never know if they do. Nothing that I have read goes anywhere near 'proving' that non-smokers are more likely to 'get' sarcoidosis. This is a myth resulting from bad science.

Furthermore, recent laboratory studies have shown that smoking increases the amount of ACE generated in the granuloma of sarcoidosis patients, indicating that smoking seems to increase the inflammation in the lungs of sarc patients...

..Trevor..

 
 Re: Sarc Targets Non-Smokers?
Author: Caroline (---.win.org)
Date:   06-03-02 07:56

I don't know much about the smoking issue from a medical standpoint. I can only speak from personal experience.

I smoked (1 pk/day) from a teen in the 60's until about three years ago. I never experienced any difficulty in breathing. I have had pneumonia 3 times since 1976.

I began having neurological sx. of sarcoidoisis several years before diagnosis, mainly a limp and a very small amount of tingling in a few fingers. A full two years after I quit smoking I developed shortness of breath. Later sarc. was found in my lungs. I joke that I should have never quit. I have had difficulty breathing since.

During one time period while attempting to quit, I felt lousy. I decided to have 'just one'. That one turned into full time smoker status. I hate to say it but I felt much better.

I have read that smoking somehow interacts with interleukin, specifically with ILII and IL6. I do not pretend to understand this. I found two references quite a while ago. One from the States and also one from Croatia.

Caroline

 
 Re: Sarc Targets Non-Smokers?
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-03-02 14:21

The Interleukins you mentioned are cytokines (actually 11 is chemokine, or did you mean IL-2) and are directly generated by active inflammation. You don't want any active inflammation, and you don't want any chemokines or cytokines as a result. So whether the cytokines are suppressed is immaterial in my view, if you have active inflammation generating the chemokines you need to do more than worry about suppressing the chemokines - you need to work on stopping the source of the inflammation

Have you tried to see if a nicotine patch has the same beneficial effect on your symptoms as the cigarettes do?

..Trevor..

 
 Re: Sarc Targets Non-Smokers?
Author: Caroline (---.win.org)
Date:   06-03-02 22:15

Hi Trevor,
Yes, I did mean IL-2 not 11. Also, I no longer smoke (but miss it greatly). I wasn't very clear in my previous post. My lung symptoms did not begin until I quit for the last time. I did have very minor neuro sx. prior to that though. No pulmonary problems whatsover.

My neuro symptoms pale in comparison to what I am now experiencing. It's somewhat of a family joke, I quit smoking to get 'healthy' and my health went south.

After reading that smoking has a protective action against Interleukin, I think I will just start smoking again if and when my lungs clear of sarc. I can go all day on coffee and ultra lights. This will add the benefit of weight loss of which I have 57 pounds of prednisone phat to lose!

Just kidding about returning to smoking--but I do need to diet. How does one lose weight when you can hardly walk from one room to the next.

Trevor, you are helping a lot of people here, keep up the good work. The knowledge is much needed about this disease. Caroline

 
 Re: Scents
Author: Maggie Sennett (---.231.173.33.static.bay.mi.chartermi.net)
Date:   11-12-03 06:44

I am having a problem at the workplace with people wearing perfumes, etc. I have a problem with the odors. Are there any others that have a problem with this as well?

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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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Sarcoidosis


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