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 The material here provides useful background, but much of it is now out-of-date.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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 Can Lyme Disease tell us anything?
Author: Admin (207.175.253.---)
Date:   04-07-02 11:43

>> UPDATE: The U.S. C.D.C. has just published a study showing that some TB microbes can also cause sarcoidosis

Belinda sent me a URL to a very comprehensive Lyme Disease site
http://www.geocities.com/HotSprings/Oasis/6455/therapy-special-abstracts.html

There is a lot here that looks very familiar. For example, the following passages caught my eye:

"Lyme disease commonly begins in summer with a characteristic skin lesion, erythema migrans, accompanied by flu-like or meningitis-like symptoms. Weeks or months later, the patients may have neurologic or cardiac abnormalities, migratory musculoskeletal pain, or arthritis, and more than a year after onset, some patients have chronic joint, skin, or neurologic abnormalities"

"Patients who had received intraarticular steroids prior to antibiotic treatment required significantly more courses of antibiotic treatment"

Particularly interesting are the facial palsy and the arthritis associated with Lyme disease. The palsy looks almost exactly like the palsy often seen in NeuroSarcoidosis, and arthritic pain is clearly one of the biggest problems for many sarc sufferers. As are the "neurologic abnormalities".

If it does hold true that sarc can be caused by infections then, as we try to figure out therapies, the literature on Lyme Disease might be extremely helpful, particularly in understanding the inneffectiveness of short term antibiotic therapies. The refractory nature of the disease also answers a problem in my mind, which was, "many sarc patients with progressive symptoms have been given antibiotics, why didn't they stop the progression of the sarc?".

Lyme patients have one real advantage. Little was known about the disease until the past decade, so there were no predelicitions about the prognosis or treatment, and consequently only the very latest medical practice seems to have been applied to its diagnosis and treatment. Sarc, on the other hand, has become the lore of 'old wives tales' by now, and doctors too readily expect it to go away with a short treatment of prednisone. And everything is downhill from there...

What are your thoughts?
..Trevor..
 
 Re: Can Lyme Disease tell us anything?
Author: Becky (---.tampabay.rr.com)
Date:   04-08-02 09:09

I was diagnosed with Lyme disease in 1993 then with sarcoidosis in 1994. I had wondered if there could have been some connection. I took Doxycycline 100mg Bid for a long time. I read somewhere there was a possibilty that Lyme disease might trigger the immune system in such a way as to cause sarcoidosis. Very interesting for sure.
 
 Re: Can Lyme Disease tell us anything?
Author: elaine emmi (---.client.attbi.com)
Date:   04-10-02 20:31

Hi all,

I had sarc first then Lyme Disease! Just love those tics. That was my last river trip......

The luck of the draw and about 20 years apart. I remember my liver and spleen were so swollen I couldn't bend over, terrible headache, fever (on and off for months) and rash/hives. Took tetracycline for a couple of months. At the time of diagnosis there were only 2 other cases in Utah. So they were trying to decide if it was the plague (yes you can still get that) or Lyme Disease. Never really decided as the more current tests weren't available then.

Hey, but I'm still here!
Elaine
 
 Re: Can Lyme Disease tell us anything?
Author: Admin (207.175.253.---)
Date:   04-10-02 20:42

Elaine,
Maybe you should repeat that tetracycline treament every so often. The references I quoted above show that it can recur, and recur, and recur. Maybe at the same time your sarc inflammation flares up?
..Trevor..
 
 Re: Can Lyme Disease tell us anything?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   11-17-02 10:11

Here's a news update on Lyme disease, , with information from the International Lyme and Associated Diseases Society (ILADS).

ILADS says many cases of Lyme disease are misdiagnosed or go undiagnosed. ILADS recently introduced new detection and treatment guidelines for Lyme disease. Doctors need to rely on more than the well-known "bull's-eye rash" to indicate Lyme disease because many patients never have the rash.

It still sounds like we might learn something from Lyme disease. The news story goes on to report,

"ILADS says doctors need to look for a wider range of complaints that may indicate Lyme disease. These include fever, joint pain or arthritis, facial palsy, headaches, dizziness, sudden weight change, fatigue, mood swings, memory loss, depression and disorientation.

An enzyme-linked immunosorbent (ELISA) test is used by most doctors to detect Lyme disease. However, ILADS says doctors need to do a variety of tests to assess Lyme antigens and antibodies and to detect Lyme DNA.

The new ILADS guidelines also call for more aggressive treatment of Lyme disease in both early and late stages. Current recommendations for early Lyme disease call for a two to three weeks of treatment with oral antibiotics."

ILADS says that's not sufficient and recommends six to eight weeks of oral antibiotics to treat early stage cases of Lyme disease. People with chronic Lyme disease may need to take antibiotics even longer and may also need to take them intravenously."

This radiology website at the University of Cincinnati says, "Lyme disease and sarcoidosis are the most common causes of multiple cranial nerve enhancement" (on imaging studies).

I realize they are NOT the same disease, but the similarities.. of symptoms, and even misunderstandings by medical professionals.. are interesting.

Belinda
 
 Re: Can Lyme Disease tell us anything?
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-17-02 10:27

Belinda says "I realize they are NOT the same disease"
Actually, they could be the same disease, except that in patients pre-disposed to Sarcoidosis, some of the Borrelia bacteria start to live in the macrophages, secreting lipopolysaccharide to fuel the sarcoid inflammatory process.

In most people the microbes are killed by the antibiotics. But not all of them are killed in sarc patients... It is possible, indeed, likely... Sarcodiosis could just be an aberrant type of infectious response...

And there are many other types of microbes that can cause Sarcoidosis, not just Borrelia...

..Trevor..
ps: Take a look at the recent thread from the US CDC about new Mycobacterial discoveries
 
 Re: Can Lyme Disease tell us anything?
Author: lee (---.ma.seidata.com)
Date:   11-01-04 11:59

I was diagnosed with Lyme in 1985.....treated with a low doses of pennicillin for many months.....with great improvement.
Last summer I had acute swelling and lesions on my ankles.....then my palms.....then after lost of blood tests and xrays I was told I had sarcoidosis.
I had many healthy years in betweeen with only low thyroid functioning....till this happened last summer.
No docs will listen to my story.....and I have seen a total of 7 incldiing 2 at our Univ hosp.
My eyesight is being greatly challenged and have been told this past year I have cholest....as they can see "it" in my eyes......
I have an app't next week with an eye specialist and hope to find out what this is all about as my cholest is NOt high!
I cannot find any one doc that will treat this disease.....any ideas out there?
Thanks.....Good Luck to us all!!!
~lee~
 
 Re: Can Lyme Disease tell us anything?
Author: Lottie (---.proxy.aol.com)
Date:   11-01-04 19:10

Lee,

Welcome to SarcInfo.

The first thing you need to do is to read. A lot! Read all the tutorials at the top of the page, and as many of the threads as you can to learn about your disease.

You may need to be ready to teach your doctor about Sarcoidosis, and the Marshall Protocol.

Many of us are receiving treatment from our Primary Care Physician, who appear more open to the MP than the "experts" in Sarcoidosis, the pulmonologists.

After you've read the information on this site, please let us know if you still have any questions.

Lottie
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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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