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 The material here provides useful background, but much of it is now out-of-date.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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 Sarcoidosis and Crohn's Disease
Author: tom (---.z065107169.sea-wa.dsl.cnc.net)
Date:   04-16-02 09:52

My mother has crohn's disease, a disease that develops non-ceseating granulomas. I have Pulmonary sarcoidosis another non-ceseating granuloma disease.

Obviously it makes you wonder what if any connection there may be.

Tom

 
 Re: Sarcoidosis and Crohn's Disease
Author: Admin (207.175.253.---)
Date:   04-16-02 10:04

Tom,
Take a look at the discussion thread "Family at higher risk of sarcoidosis"

The inflammatory diseases have more similarities between them than they have differences. I suspect that a large pool of genes provide various factors for pre-disposition, and then an environmental event (a bacterial infection, for example) triggers one or other manifestation, and, frequently, triggers multiple inflammatory diseases in the one patient.

Arthritis, for example, is often suffered by sarc patients, and is probably a different manifestation of the same immune challenge (IMO).

..Trevor..

 
 Re: Sarcoidosis and Crohn's Disease
Author: tom (---.z065107169.sea-wa.dsl.cnc.net)
Date:   04-16-02 10:24

I looked at that thread on "family at higher risk of sarcoidosis." Interestingly, two years ago when my ILD was identified, my wife got alopecia, a disease discribed as an imune system disorder where your hair falls out in patches. She recieves injections to help the hair grow back whenever a new patch appears.

Tom

 
 Re: Sarcoidosis and Crohn's Disease
Author: John W (---.alphalink.com.au)
Date:   04-30-02 01:33

Tom, I was diagnosed with Sarcoid in 1975, my son (now 31) was diagnosed with Crohns in about 1984. My 27 yo daughter has granuloma annulare & several times suspected of crohns but occasional attacks resolve themselves. I often wonder about immunisation as a possible cause of these immune diseases. Do you know Hep B vaccinations dont take in sarc sufferers

 
 Re: Sarcoidosis and Crohn's Disease
Author: Sarina (---.netrax.net)
Date:   06-06-02 07:52

My daughter was diagnosed with Crohn's a few years ago. Last year, she was diagnosed with Sarcoidosis. The Crohn's is under control with medication; however, strange symptoms still persist in ref. to the sarcoidosis. How common is it to have two auto-immune diseases?

 
 Re: Sarcoidosis and Crohn's Disease
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-06-02 08:10

Sarina,
How was the Crohn's diagnosed? By Endoscopic biopsy? Barium meal? What 'medications' are used to control it? How was the sarcoidosis diagnosed? Has she been treated with antibiotics for the Crohn's?

There are a number of possibilities for co-existence as well as for vague diagnosis. Maybe somebody can offer some advice with a little extra information.

..Trevor..

 
 Re: Sarcoidosis and Crohn's Disease
Author: Sarina (---.netrax.net)
Date:   06-06-02 11:09

My daughter's Crohn's was diagnosed through a biopsy during a colonoscopy. A few years later, she developed arthritis; with further testing, a chest x-ray showed swollen lymph glands -- and the diagnosis of stage 1 sarcoidosis. (Her lungs are now clear) She had every test imaginable and it hasn't appeared the sarcoid has spread. However, she is having spells of lightheadness along with a pressure feeling behind her eyes and in her chest. Her ENT exam checked out OK. The neurologist thinks this may be a form of migraine because he doesn't think what she's describing is coming from the sarcoidosis - I'm not so sure I agree at this time. She had a brain MRI; something is there so they want her to see the eye doctor. She has been checked twice for sarcoid in the eyes - she had a normal exam each time. Hopefully, she get an answer soon. She's so tired of being "tired". Thanks for your informative web site!

 
 Re: Sarcoidosis and Crohn's Disease
Author: Ken (---.proxy.aol.com)
Date:   06-06-02 11:41

A good site discussing Crohns relating to other disorders

http://webmd.lycos.com/content/article/3204.672

 
 Re: Sarcoidosis and Crohn's Disease
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-06-02 15:29

Sarina,
Both Crohn's and Sarcodiosis require that
1. Your body has a genetic predisposition to an unusually active immune reaction, and
2. There is a stimulus to set off and/or sustain the inflammatory process

Sarcoidosis is strictly an immune disorder which is diagnosed by the process of exclusion, so that if you are later found to have, for example, berylliosis, then your sarc diagnosis is nullified. Crohn's is somewhat similar, depending on the degree of throughness of the biopsy pathologist.

But I don't think it is helpful to think as either of the syndromes as entities in and of themselves (for they really are not true diseases but syndromes (groups of observations and symptoms from a poorly defined cause)).

I think it is more useful to think of both syndromes being due to the same two items I have listed above. Sometimes the stimulus may cause a greater formation of immune macrophages in one organ or another, but the fundamental underlying process is the same. Different individuals have different genetic makeups, and their susceptibility to one or other set of symptoms is consequently also a little different.

The most recent research about the triggers for sarcoid has centered on bacteria. It has been found that a sarc patient can have an immune reaction to bacteria that a 'normal' individual would not reject as a 'foreign invader', and activate its immune system to reject.

One of the most common bacteria that has been implicated is Propionibacterium Acnes, the bacteria thought to cause acne eruptions. A recent International study found that even such an innocuos bacteria seemed to be capable of causing a sarcoid immune reaction. There are other threads on SarcInfo that go into bacterial genesis in detail, I just wanted to point out to you the manner in which our thinking is shifting from sarc being an autoimmune disorder to one that is caused by immune agents that would normally be assimilated into the body. The concept of 'autoimmunity' was always an anathema to medicine, and it seems that this myth is at last being dispelled.

The scary thing about Propionibacterium Acnes is that it is resistant to many of the antibiotics, especially Erythomycin, the most commonly prescribed bacteria for skin disorders. Luckily, it is susceptible to the Tetracycline family, and even a few days of therapy with the tetracyclines can kill refractory bacteria, such as Rickettsia. Print these references out to discuss with your doctors, it seems that most doctors want to prescribe a one year course of tetracyclines, which may not always be necessary.

Finally, fatigue is a very common symptom of patients who have sarcoidosis, Arthritis, or indeed any inflammatory disorder. IMO it is primarily caused by the hormone 1,25 Dihydroxyvitamin D3 and/or the Angiotensins II, III and IV which are formed by the inflammatory macrophages.

It is my experience that if you get rid of the inflammation you find that the neuro symptoms disappear as well.

..Trevor..

 
 Re: Sarcoidosis and Crohn's Disease
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-03-02 14:31

Karen,
There is increasing evidence that a huge range of diseases, including Sarcoidosis, Arthritis, Crohn's and all the Arthritises are all caused by microbes. Bacteria living in our tissues.

However, the statement "since our body's immune system has nothing to fight, consequently, it attacks itself" is utter rubbish. Typical TV stuff. I suspect that anything like this got yanked off of the University's website.

Firstly, in Sarcoidosis the body is not attacking itself. It is generating a large number of particularly voracious macrophages and giant cells, but they are attacking bacteria. You just gotta look hard to find the bacteria. The microscope photograph in the Remission Summary was taken at a magnification of 84 000. You can imagine how hard it is to focus

As for us being a "clean living" population, that also is a fallacy. Ridiculous. We are all full of microbes. E-Coli, Streptoccoccae, and a host of other microbes and flora which we live with on a daily basis. Acne bacteria - the list seems endless.. Not to mention the bugs that have adapted to live in the Sarc granuloma. The Rickettsia and Borrelia and the like. Tropical disease bugs. The microbes would cause disease regardless of whether they invade in childhood or later in life.

So, secondly, the body has plenty to fight. If you look hard enough (down at the cellular level) you will find lots of bacteria already living there. In the so-called "disease" states there are even more interesting (and complex) bugs inhabiting our bodies.

I know there are people out there that still subscribe to the "auto-immune" theory. It has never made sense to me. There are just too many parts of it that do not hold up to scrutiny. The conceptual "need" for Sarcoidosis to have any "auto-immune" component was removed with the recent discoveries of Rickettsia and other bacteria living and growing in the sarcoid granuloma.

Trevor

 
 Re: Sarcoidosis and Crohn's Disease
Author: Debi (---.proxy.aol.com)
Date:   09-08-02 18:10

Hey Tom, if you find out there is a connection please e-mail me. I have pulmonary sarc; along with it affecting several other areas. My son was hospitalized being test for chrons disease. He was in for almost two weeks; they kept saying they thought that's what he had but he was released with diagnosis being undetermined....didn't and still doesn't make since to me... Thanks for any information. Debi

 
 Re: Sarcoidosis and Crohn's Disease
Author: mary (---.proxy.aol.com)
Date:   07-26-03 21:16

Hi,
I see that no one has been on here for a year but I am still going to comment. I have stage 4 sarcoid. I had a lung biopsy and also a mediastinoscopy biopsy. The later revealed the granuloma's. Probably some 15 yrs ago my brother was diagnosed with crones. He had a foot of his colon removed and when they biopsied the tissue the crones was discovered. He also has the b27 marker and I do too. My dad also carried the b27 marker. My dad and my brother both have rhumitoid. My brother has ankelosing spondilitis. That is a rare form of arthritis that attacks the spine. Aren't we a lucky bunch? Ha Ha. Thank you for the web sites to check out too.
Mary Root

 
 Re: Sarcoidosis and Crohn's Disease
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-26-03 22:46

Mary,
During the year this thread has been inactive we have discovered the bacterial cause of sarcoidosis and have proven that there is a cure.

Dr Thomas Brown had previously proven RA was due to hidden bacteria, and recent studies with Crohn's have also shown antibiotics effective in treating it.

Read all the tutorials at this site. The cure is equally applicable to the diseases you described were running in your family.

Welcome to SarcInfo

..Trevor..

 
 Re: Sarcoidosis and Crohn's Disease
Author: brendan (---.mcbone.net)
Date:   02-01-04 08:32

I thought I would add to the board.

I have Sarcoidosis.
My mother has Crohn's Disease.
Her grandfather was completely disabled from Rheumatoid Arthritis.

There may be a connection.

Brendan

 
 Re: Sarcoidosis and Crohn's Disease
Author: J.B. (---.proxy.aol.com)
Date:   03-09-04 17:20

I think there is a connection with crohns disease and sarcoidosis. I have had crohns disease since1982, and sarcoidosis of the lungs since 1999. I was in remission with both diseases until I skipped the medication for the crohns numerous times. The crohns flared up and also the sarcoid. I am in the process of trying to get them both under control.

 
 Re: Sarcoidosis and Crohn's Disease
Author: Pippit (---.asm.bellsouth.net)
Date:   03-09-04 18:49

J.B.

You're right. There is a fair amount of evidence now that all the autoimmune diseases have a bacterial cause and a similar biochemistry. Once you start on the antibiotics and Benicar you'll find that both diseases start to get better.

Be sure to give a copy of Trevor's most recent paper to your doctor;

Sarcoidosis succumbs to antibiotics-implications for autoimmune disease. It can be found and printed out at Science Direct doi:10.1016/j.autrev.2003.10.001. This is published in a prestigious and well accepted medical journal and your doctor will likely see the clearly illustrated correlation between the treatment of Sarcoidosis and other autoimmune diseases and understand why these particular medications are indicated. The full text should be available through the written journal Autoimmunity Reviews if he wants to read it in its entirety.

Pippit

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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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