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 The material here provides useful background, but most of this site is now out-of-date.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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 ocular sarcoidosis
Author: sara (---.162.120.182.dslextreme.com)
Date:   05-14-02 13:00

Hi, i was finally diagnosed with sarcoid after years of recurring intermediate uveitis when they found swollen lymph nodes in my ct scan. i am looking for more info from folks who have ocular sarcoidisis and what the course of thier disease has been. so far i feel lucky that i have had no other problems but i am getting a gallium scan to make sure. sure would like to learn more. So far i have been on oral pred. and get steroid injections in my eye and have had decent results. hoping to get the eyes back in remission and keep the rest of the system healthy as well.

thanks
sara
 
 Re: ocular sarcoidosis
Author: Caroline (---.win.org)
Date:   05-14-02 14:06

Hello Sara,
I have been treating iritis (or uveitis, it's been called both) for years. It affected my right eye much worse. Unbeknownst to me my ACE level was tested twice by two different docs, normal both of those times and still continues to be normal.

I was given oral pred., pred forte drops along with the dilating drops (I don't remember the name of that). Later after that treatment didn't clear it up, I had kenalog injections.

With so much pred., I developed a cataract in the right eye. That was removed when my inflammation was quiet. It was great because of being able to see well uncorrected. BUT, it came back and now my vision is correctable only to 20/50 in the right eye.

Sarc was diagnosed several years later in my lungs. Later, that diagnosis was changed to neurosarc as I developed other physical symptoms over time.

Good luck in treating your iritis! It tends to be stubborn, at least in my case and everyone is different. Keep current on you optholomogist appts. and see the best one you can find.

Take care, Caroline
 
 Re: ocular sarcoidosis
Author: from the south (---.mobilh01.al.comcast.net)
Date:   10-22-03 18:02

I have had iritis for three years now. I have been able to controll it with pred. drops. Then two years ago, in three different places on my head I lost all the hair. It grew back quickly. This past week I went to the emergency room with back and chest pains. I was given a chest x-ray, ct scan, and then a broncioscope because my lymph noeds were inflammed. I am still having the chest and extereme back pain but have not received any diagnosis. I was tested for daignosis of sarcoidosis with the biopsy but the result was negative. I am going on my own will the a rheumotologist this week to see if he can make since of any of this. Oh, and I recently had blood in my urine for five days. After seeing a urologist, I was told nothing was wrong since they did not detech any thing in the IVP test.
Have you ever experienced any of this??????

Look for any help I can get!!!!!
Signed,
somebody...... in the south
 
 Re: ocular sarcoidosis
Author: Meg (---.115.75.185.euc.wi.charter.com)
Date:   10-22-03 18:53

Hi Sara,

Welcome to SarcInfo. If you'd like to learn more, you've come to the right place!

After years of intermittent bouts of uveitis, it wouldn't be surprising if you had granulomatous inflammation in other parts of your body. Read the hypervitaminosis-D tutorial for symptoms you may recognize.

The course of chronic sarcoidosis varies but you can count on it gettting steadily worse. Prednisone will not cure your eye inflammation as you've seen. But it can give you cataracts and other nasty diseases. Please read the links about steroids at the bottom of this page.

Everything you need to know to put your sarcoidosis into remission is on this website. Please read it thoroughly and talk with your doctor. The FAQs tutorial and the search engine are especially helpful to find answers to your questions. You can reprint any of the Papers for Physicians.

Good luck,

Meg
 
 Re: ocular sarcoidosis
Author: Meg (---.115.75.185.euc.wi.charter.com)
Date:   10-22-03 20:03

Hi Somebody,

Three years is a long time to have iritis. This history suggests that your other symptoms may also be due to a systemic inflammatory disease. Sarcoidosis has been difficult to diagnose because doctors believe that a biopsied diagnosis is necessary. But granulomatous tissue can be elusive despite its widespread effect on the body. Sometimes a doctor makes a diagnosis on clinical presentation alone.

Checking your D-metabolites can give you and your doctor valuable information about the extent of the inflammation in your body. If they are abnormally high, it is indicative of inflammatory disease. And its important to treat that elevation even if your disease doesn't have an official label.

Each of your specialists seem to be looking at only one part of your body. Lacking clear evidence of disease, they are reluctant to treat you with the usual medication because of its high risk/benefit ratio. Typically doctors monitor a patients decline with expensive tests until a major organ is damaged enough to warrant treatment with steroids.

A common technique used in the practice of the art of medicine is the therapeutic probe. This means a medication is given and if the expected result is obtained a diagnosis is made on that basis. Gout, for example, is often diagnosed by prescribing an antigout agent. If the medication works, the patient is presumed to have gout.

Sarcoidosis (and some other related inflammatory diseases) oblige us with a Herxheimer reaction in response to the correct antibiotics. This verifies the presence of occult microbes which need to be eliminated in order to cure the inflammatory disease. Ask your rheumatologist about his experience treating rheumatoid arthritis with minocycline. He should be familiar with the Jarisch-Herxheimer reaction and perhaps willing to try a therapeutic probe.

I hope you will continue to read SarcInfo. Let us know if you have any other questions.

Meg
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This is an archive site, membership and posting are no longer allowed.

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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