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 The material here provides useful background, but much of it is now out-of-date.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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 Antibiotics
Author: Caroline (---.win.org)
Date:   05-15-02 12:18

Hello -
I have been trying to digest all the information about ticks, fleas and bacteria. I asked if i had been tested for rickettsia and I have. I have read everything I can on this forum about this (although I admit I don't completely understand it all).

Now to my question......can this type of bacteria lie hidden from bloodtesting? I understand the bacteria itself can lie dormant long before symptoms occur.

I worked as a dog groomer long before I became symptomatic. I remember during grooming some dogs, that the 'pyrethrin dip' water would be pink from all the flea and tick bites. These particular owners would have their poor dogs groomed prior to the vet visit to make them "look" like responsible pet owners.

Of course I am looking for the long shot, as to the cause of my sarc. I would like to just try a course of antibiotics even to the point of asking around to see if anyone has some to take on my own. I don't see that antibiotics would cause anything to worsen.

Caroline
 
 Re: Antibiotics
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-15-02 12:44

Caroline, I have left lots of references in the main threads on ticks and Minocycline which report not only that bacterial organisms can lie undetected and/or dormant in soft tissue, but also that prednisone helps them to remain undetected.

Based on that data, there is no way that I would rely on 'tests' that clearly fail all too frequently.

There is risk associated with the use of antibiotics, but it is miniscule compared to the risks of the other drugs that sarc patients get thrust at them. Discuss the issues with your doctor, and note that some doctors are less likely to prescribe antibiotics than others. Heck, some Dermatologists even give Erythromycin and Doxycyclin to teenage kids to try out on their Acne!

The Tetracyclines, including doxycyline and minocycline, are reported to be very effective against the soft tissue bacteria, but wide spectrum antibiotics have also been used (see meshelle's report about Levaquin). Just make sure you don't develop a resistance to all the wide-spectrum antibiotics - you might need to be treated with them one day. It is NOT a good idea to over-use Cipro, for example...

Sincerely,
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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