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 The material here provides useful background, but much of it is now out-of-date.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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 Swedish scientists find new trigger for sarc
Author: Mike Norris (---.telia.com)
Date:   04-14-02 02:30

I read in a major paper in sweden that after research, they found out that almost EVERY sample of tissue from some swedish sarcoidosis patients had the bacteria "riccetsia helvetica" in them. This bacteria is spread by tics.

(the article, in Swedish, is at http://www.aftonbladet.se/vss/halsa/story/0,2789,154884,00.html)

I for one got this disease when I moved to a new house. I have never had so many tics inside the house from my dog. I dont think I got bitten but I am not sure.

This can be a break through. If it is this bacteria, then we have to come up with a vaccine. Its a typhus related bacteria, so if we can cure typhus why not sarcoidosis.

Best Regards Mike

 
 Re: Swedish scientists found the cause..
Author: Mike Norris (---.telia.com)
Date:   04-14-02 02:34

Ah sorry I saw this information was already mentioned in a more technical way

(see message thread http://sarcinfo.com/phorum/read.php?f=1&i=98&t=98)

Hope though for all of us.

 
 Re: Swedish scientists found the cause..
Author: Mike Norris (---.telia.com)
Date:   04-14-02 03:33

Some more thoughts.

If in my case it was the riccetsia bacteria, is it still alive in my body or is it the remains of dead bacteria that my body is fighting?? And if I become bitten again with a tic that carries riccetsia will it become even worse??

If riccetsia is just one of several bacterias, what should we fight?
Our body's misbehaving imune system? Or should we try to destroy the remains of the dead bacterias?

Just curious. I am on my second year soon of this hell.


Best Regards MIke

 
 Re: Swedish scientists found the cause..
Author: Admin (207.175.253.---)
Date:   04-14-02 04:07

The 64,000 dollar question, Mike! ("is it still alive in my body or is it the remains of dead bacteria that my body is fighting")

For the last four decades (since the discovery of Prednisone in the 50's) we have fought the body's misbehaving immune system, primarily with prednisone, recently with newer drugs that were developed to inhibit the multiplication of cancer cells. This approach can hardly be called a spectacular success (see, for instance, "Prednisone Improves Symptoms but not Lung Function in Sarcoidosis" or "Bone sarcoidosis" or "Comparative evaluation of the effectiveness of traditional and combined therapies of patients with sarcoidosis".)

Nevertheless, we have very little information available to help us figure out where to go from here. I started the thread on treatments for Lyme Disease because I felt that the experience which has been gained from understanding how to deal with Lyme may be applicable to the 'similar' bacteria which have now been found in sarc granuloma.

My guess, and it is purely a guess at this point, is that the DNA from killed bacteria would be encased by the body's macrophages over time. Is that time scale months, years, or decades? Probably months and years. But if we look at how hard it is to totally suppress flare-ups of the known recalcitrant bacterial diseases, I would suspect that there probably are flare-ups of Rickettsia/TB/Whatever activity in sarc patients as well. I think the primary difference is that the sarc patient's bodies reject the DNA, and the granuloma which are consequently formed do additional damage to the body above and beyond what the live bacteria itself causes. Again - this is purely a guess on my part at this time.

Additionally, we have not definitely proven that the sarc granuloma were caused by the bacterial DNA found in the biopsy slides. It is still possible that this DNA just happened to be scattered throughout tissue, and that the body was actually encasing something else. But we have nothing to lose by accepting the cause hypothesis at this point, IMO. It may lead us to a better understanding of the sarc disease process, and it may lead to development of alternative therapies, ones that Doctors can rely upon to treat this disease effectively.

Even assuming that another cause of sarc granuloma may have been found, we will still have to work on dealing with the non-granulatomous damage that has been done to our bodies by the live bacteria. Still, I would suspect many of these symptoms would be similar to those caused in the general population by Lyme and other bacterial diseases (meningitis? encephalitis?) and if so, a plethora of treatments ought to become available fairly quickly.

I would suggest you print out the article on the Rickettsia discovery and discuss a course of anti-biotic and anti-microbial therapy (plaquenil) with your doctor. The drugs he would use do have side effects, but these pale in companison to the risks of drugs already being used to treat sarc.

..Trevor..

 
 Re: Swedish scientists found the cause..
Author: Caroline (---.win.org)
Date:   06-15-02 21:13

Just ran across this while 'searching' neurosarcoidosis---is this yet another cause? (BTW, no implants here). Caroline

Neurosarcoidosis following augmentation mammoplasty with silicone
====================================================
Yoshida T; Tanaka M; Okamoto K; Hirai S
Department of Neurology, Gunma University School of Medicine, Japan.
Neurol Res (ENGLAND) Aug 1996 18 (4) p319-20 ISSN: 0161-6412
Language: ENGLISH
Document Type: JOURNAL ARTICLE
Subfile: INDEX MEDICUS
We report a patient with neurosarcoidosis, which developed 22 years after
augmentation mammoplasty by the injection of silicone gel. She presented
with bilateral hilar lymphadenopathy, left-sided lower cranial nerve palsies
(8th, 9th, and 10th), and vestibular ataxia, which improved following the
administration of prednisolone. Biopsy of the breast nodules showed
granulomatous changes identical with those of sarcoidosis, while infrared
spectrophotometry disclosed that the nodules contained polydimethylsiloxane,
a major component of the silicone gel injection. This is the first report
of neurosarcoidosis following silicone mammoplasty.

 
 Re: Swedish scientists found the cause..
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-15-02 21:27

Caroline,
The researchers found polydimethylsiloxane, a major component of the silicone gel injection, in the sarc nodules. Sarc granuloma usually have nothing identifiable inside them. If there is something identifiable, such as the bacterial remnants, or the polydimethylsiloxane, that is a pretty good sign that the granuloma were formed by the body as an immune response to something that it regarded as "foreign".

Have you ever had an aggressive reaction to those plastic IV catheters that they use in hospitals now? I always come up in a great big welt, whereas the steel needles were fine. Again, this is an inflammatory reaction, but a local one.

..Trevor..

 
 Re: Swedish scientists found the cause..
Author: Caroline (---.win.org)
Date:   06-15-02 22:41

Trevor,
Regarding welts from the plastic IV's I have had no trouble. Funny you mention metal as I just applied a cortisone salve to my wrist where my watch was. I have a perfect circular and extremely itchy welt that matches the shape and size of my watch. This happened about a month ago and I thought 'something' had gotten on the back of my watch so I wiped the back with alcohol, waited for the welt to disappear and just resumed wearing it a few days ago. Took about a day for this recurrance.

Maybe I will tell my husband I need a Gold watch so my skin doesn't react. He'll buy that won't he? <GRIN>

Would your reaction to the plastic IV catheters be similar to those who react adversly to plastic/latex gloves?
Caroline

 
 Re: Swedish scientists found the cause..
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-15-02 22:53

I don't think so. I think the latex glove reactions are an allergy, whereas sarc is a T-cell mediated immune reaction.

I use plastic watchbands. Haven't had any trouble with stainless steel, and never even thought of using gold

Red skin usually results from the dirt that collects in the crevices, I put my bands into an ultrasonic cleaner from time to time.

..Trevor..

 
 Re: Swedish scientists find new trigger for sarc
Author: elaine emmi (---.client.attbi.com)
Date:   06-19-02 18:39

Hi Caroline,

I'm one of those that gets a rash from 'cheap' metals - mostly nickel. Kind of like prickly heat. Have to wear surgical steel, plastic or gold. In Sweden many people have this nickel allergy and all earings have to have surgical steel posts, unlike in the US.

So definitely, buy a gold watch! Sounds like a good idea!
Elaine

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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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