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 The material here provides useful background, but much of it is now out-of-date.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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 Sarcoid of the Blood ???
Author: Cher (144.138.225.---)
Date:   04-15-02 09:40

Hi everyone, Yeah me again. I have just heard of someone being diagnosed with Sarcoidosis of the Blood & has been given only a few months to live. I have never heard of this type before & wondered if anybody else had been diagnosed or even heard of this type? Is there any end to this disease & what it can & cannot attack? It doesn't seem that there is & I am continually hearing of more & more sufferers. Let's hope it stops soon.. cheers ... Cher
 
 Re: Sarcoid of the Blood ???
Author: Admin (207.175.253.---)
Date:   04-15-02 15:57

According to Dr Om Sharma, one of the acknowledged experts in sarcoidosis, "Sarcoidosis, as defined in 1976 by the Seventh International Conference on Sarcoidosis, is a "multisystem granulomatous disorder of unknown etiology, most commonly affecting young adults and presenting most frequently with bilateral hilar Iymphadenopathy, pulmonary infiltration and skin or eye lesions"

You need to ask the doctor(s) that gave this diagnosis of "sarcoidosis of the blood" exactly how they diagnosed this disease state, and perhaps refer them to Dr Sharma for a second opinion. I myself can't imagine any way that sarcoidosis (non-caseating epithelioid granuloma) could exist in plasma. It is a disease characterized by tissue inflammation.

Keep smiling,
Trevor
 
 Re: Sarcoid of the Blood ???
Author: pages2 (---.kc.rr.com)
Date:   04-15-02 19:26

Could this person mean sarcoidosis of the vessels that carry blood?

Look up Sarcoidosis vessels on google
http://www.google.com/search?hl=en&q=Calciphylaxis+%2Bsarcoidosis+vessels&btnG=Google+Search]

Then try "Calciphylaxis sarcoidosis vessels"

What do you think?
 
 Re: Sarcoid of the Blood ???
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   04-15-02 20:48

Cher,

You may want to read this article: http://www.baylorhealth.com/proceedings/14_1/14_1_pierce.htm.

There is some information about how sarcoidosis affects the peripheral T-lymphocytes and blood.

Hope this helps.

Belinda
 
 Re: Sarcoid of the Blood ???
Author: Cher (144.138.225.---)
Date:   04-16-02 07:08

Hi Guys,
I just wrote what I was told. I don't know who the diagnosing Dr was or how he came to the conclusion that he did but that is what I was told. I only know that the patient is here in Perth, Western Australia & was diagnosed here too. To see Dr Sharma for a second opinion would be impossible.
So it's all a mystery really, that's why I asked ? ha ha ha ... cheers ... Cher
 
 Re: Sarcoid of the Blood ???
Author: Admin (207.175.253.---)
Date:   04-16-02 07:17

Hey Cher,
I taught at Curtin and studied at SCGH, so I know there are better physicians in Perth than the one that told you somebody had "sarcoidosis of the blood". Please don't take it personally, I am not being critical of you, but of whoever came up with such an inadequate description of an illness.

Dr Sharma replies to emails from all over the world, since he researches/teaches at USC, and you should not feel isolated just because you live in Australia. The Internet is a great leveller Biopsy slides can easily be FedEx'ed around the world without the patient or physician having to do any travelling.

My research colleagues at SCGH are pretty high up now, and Ted Keogh has passed on, but Dr Tim Welborn's secy should be able to help you get a name of a suitable physician for a second opinion.

Keep smiling,
..Trevor..
 
 Re: Sarcoid of the Blood ???
Author: AJ (---.rasserver.net)
Date:   08-24-03 16:38

I WAS RECENTLY DX WITH SARCOID OF THE LEFT NOSTRIL THEY AT FIRST THOUGHT I HAD A STAPH INFECTION; I ALSO HAD A DVT OF THE LEFT LEG AND WAS DX WITH PROTEIN C AND S DEFIENCY (HEREDITARY) I CURRENTLY TAKING 15MG OF COUMADIN DAILY. I HAVE SLEEP APENA AND MY JOINTS ARE CONSTANTLY BOTHERING ME I CAN BARELY LIFT MY LEGS TO WALK. I' M ALWAYS TIRED I HAVE HAD CAT SCANS MRI'S AND NERVE CONDUCTION TESTS NO ONE CAN SEEM TO ENLIGHTEN ABOUT MY CONDITION. PLEASE IF ANY ONE ELSE CAN TELL ME WHAT THEY THINK PLEASE E-MAIL ME .
 
 Re: Sarcoid of the Blood ???
Author: Meg (---.188.239.198.euc.wi.charter.com)
Date:   08-24-03 22:48

AJ,

Welcome to SarcInfo. Some of the symptoms you mention sound like they may be related to sarcoidosis. You have come to the right place for information.

Please spend some time reading the patient tutorials and physician papers at the top of the page, the links to articles at the bottom of the page and the topic messages (threads), especially those that are starred.

There is also a search feature on the site where you can type in words and find specific intormation. Be sure to click on 'all dates' so you will get the most complete search.

If a phrase is written in bold type in a message, you can click on it to automatically get more information. Then press your back button to return to the text.

You may need a medical dictionary (you can find one online) for some of the papers but I hope you can get the basic idea of Trevor's description of sarcoidosis etiology and treatment.

The email addresses on this site are protected for privacy. Let us know if you have any specific questions.

Meg
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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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