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-sites of the Autoimmunity Research Foundation.
 
This archive of the historic study is maintained by volunteers from the Foundation. The material here provides useful background, but most of this site is now out-of-date.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


 Main Menu  |  Search  |  Log In   Newer Topic  |  Older Topic 
 **MUST HEAR: CBC Radio- The Bacterial Revolution**
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-27-03 09:16

Belinda has just pointed out a Canadian CBC Radio Show that aired on 28 May and 4 June 1999, called "The Bacterial Revolution"

They deal with bacterial pathogenesis for MS, Crohn's, Cardiac disease, Arthritis, and they interview many scientists talking about the "stealth pathogens". Of course, these are the same bugs that have caused your sarcoidosis.

There is a webpage available (click here) although it is pretty old, and the audio links on it are no longer usable by today's RealPlayer software. Look at the web page while you listen to the radio programs.

I have reprocessed the audio for you, and have been listening in amazement to the people they interviewed, including Lida Mattman, who proved CWD were involved in sarcoidosis during her landmark 1996 study, and Willy Burgdorfer, who discovered the Lyme Disease microbe.

This will take you a day (or more) to listen to, relisten, and digest. Given what we now know, we can see that CWD in disease is really nothing new, but that the key information has been suppressed from the people who need it most - the sick patients.

Program 2 (4 Jun 1999) is extremely pertinent, with explanations of "Stealth Pathogens", PCR DNA, CWD bacteria etc... But then, so is the 28 May show.. a real treasure-trove!

The audio can be heard in Windows audio format (click "open this file from its current location")
Click here for 28-5-1999 program
Click here for 4-6-1999 program

For for those who don't use Windows, the MP3 versions (which are higher quality anyway) can be downloaded from this link for program 1 and this link for program 2.

Enjoy,
Trevor

ps: I think Dr. Josef Penninger is incorrect when talking about "auto-immune" mimicry directed against the host - there is no evidence of this in sarc patients - so don't get too hyper over those concepts until we discuss them in more depth...
 
 Re: *** CBC Radio Show - The Bacterial Revolution ***
Author: Christian (---.ipt.aol.com)
Date:   04-28-03 19:41

Trevor and Belinda,

Thank you for digging out that one. It is truly an amazing show. I've been literaly riveted to my computer for two hours. I particularly enjoyed listening to Professors Mattman, Burgdorfer and Nicholson. I will have to listen to it again.



This should be mandatory for all medical students (and for our Docs also). What I find mind-boggling is that that Bacterial Revolution has not yet been widely recognized.


Christian
 
 Re: **MUST HEAR: CBC Radio- The Bacterial Revolution**
Author: wolf@p.. (---.agstme.adelphia.net)
Date:   12-31-04 21:49

I have had sarcoid for 4 years, in remission for 3 then last july I became sick again and have been on presnisone, what experiences have people had who have been on this med for so long, I started out at 20mg this time a day and dropped down to 10mg a day for the last few months, every once in awhile I go back to 20mg because I start to cough and have trouble breathing, I am also a diabetic and of course the steroids push my blood sugar up to the 450 range. How can I help myself. wolf.
 
 Re: **MUST HEAR: CBC Radio- The Bacterial Revolution**
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-01-05 00:57

Hi Wolf,

Welcome to SarcInfo. You can read about the effects of prednisone in this thread and the links at the bottom of this page.

You can help yourself by talking to your doctor about weaning from Prednisone with the help of Benicar and testing your D-metabolites asap. You can also avoid Vitamin D and sun/lights and protect your eyes with NoIR sunglasses. These measures alone may make you feel a bit better.

In order to get well, you will need to wean from prednisone and follow the Marshall Protocol.

Let us know if you have any questions about the Marshall Protocol that are not answered by the patient tutorials, links, papers for physicians or threads on this site. You can also find easy to understand explanations and support on our sister website, marshallprotocol.com.

Best,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
 
 Re: **MUST HEAR: CBC Radio- The Bacterial Revolution**
Author: Lottie (---.proxy.aol.com)
Date:   01-02-05 04:58

Hi, Wolf!

Please follow Meg's advice.

I was diagnosed with Sarcoidosis in 1998, and was on Prednisone for about five and a half years. I have more systemic than lung involvement.

I am quite sure that I have cardiac involvement, and although the shortness of breath and carciac inflammation did resolve for several years while on the Prednisone. The end of 2003, it started back, and I was still on Prednisone. My heart inflammation returned and was worse... while still on Prednisone. That sent me back to the internet for more information on Cardiac Sarcoidosis, and fortunately to SarcInfo.

I started the Benicar, and was able to wean off of Prednisone with it. I am now on phase one of the Marshall Protocol, and will soon be advancing to phase two.

I urge you to read everything you can on this site, and discuss weaning off of Prednisone and starting the MP!

Do let us know if you have any questions.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: **MUST HEAR: CBC Radio- The Bacterial Revolution**
Author: grant (---.tnt7.dial.mtl1.uunet.ca)
Date:   01-03-05 11:41

Any chance that these radio shows could be included on a DVD (like the one I obtained from the Autoimmunity forum? (Lyme forum presentation)...

This DVD is great for dropping off at the doc's office, or with other interested patients. The inclusion of the radio shows would be great. I have listened to them in the past, but my computer no longer works with the latest format and I'm not eager to download 6Megs+ on a dialup connection.

Thanks for considering it.
 
 Re: **MUST HEAR: CBC Radio- The Bacterial Revolution**
Author: Bev Leigh (---.dsl0.crls.pa.net)
Date:   01-03-05 12:11

My 33 year old daughter has recently been diagnosed with pulminary sarcoidosis. Can you help in laymens terms? (I've read a lot of the medical stuff). What is sars and what are some hints the doctors don't tell. My daughter, Angie, has had a really bad time with the rash. Some areas of the skin under the rash look like she has been beaten. Angie has had pain in the chest and thought her "asthma" was getting worse. She has been over using her inhalors - something she has not had to use much in the past 10 - 15 years. Does being an asthmatic a precursor to sars? Angie's lymph glands in the front center neck have been enlarged for several months.

What is CBC radio? How do I find/listen to it. Any info would be greatly appreciated. Even though your children grow up and leave home they will always be your baby, especially when they hurt!!

Thanks for any help you can give.
 
 Re: **MUST HEAR: CBC Radio- The Bacterial Revolution**
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-03-05 15:38

Hi Bev,

Welcome to SarcInfo. I'm sorry that your daughter is so ill. Your research into sarcoidosis could make the difference between a lifetime of ill health and recovery. Many sarcoidosis patients are misdiagnosed with asthma which is actually sarc respiratory inflammation. Chest pain and rashes are just two of the typical sarc symptoms that will resolve with the Marshall Protocol.

The CBC radio show is described in the first post of this thread. You can access it by clicking on the highligted words there. I would suggest, though, that you first read all the patient tutorials in the yellow box at the top of this page.

Everything your daughter needs to know to put her sarcoidosis into remission is on this website or our 'sister site', marshallprotocol.com.

She can print out (and highlight ) the Papers for Physicians and take them to her doctor. Dr. Marshall welcomes phone calls from physicians and his number is on all those papers.

She should tell her doctor that SarcInfo is not really a 'website'. It was created to conduct an Internet-based observational-clinical-trial of therapies which can cure sarcoidosis.

Many of the patients in the SarcInfo study are health care workers-Doctors, Nurses and ex-Nurses. Therapy is prescribed and monitored by the patients' personal physicians. There are over three hundred patients on the Marshall protocol now and over 95% are responding without further risk to their health.

Sarcinfo has so much new information that many people without a medical background are overwhelmed by it. Don't hesitate to ask any questions you have there. You will usually get an answer from one of the moderators within hours.

Best,

Meg

P.S. SARS is Severe Acute Respiratory Syndrome. It was in the news last year when there was an outbreak in China and Canada. We sometimes refer to sarcoidosis as sarc but never sars.
 
 Re: **MUST HEAR: CBC Radio- The Bacterial Revolution**
Author: Ruth Case (---.state.wy.us)
Date:   01-04-05 14:55

I have heard about a possible new treatment for psoriasis through a cream that acts on keratinicytes. Is this a possibility for treatment of sacrodosis since it apears that the bacteria live in the keratinocytes(cells of the skin) and makes them super active in persons with sacrodosis. I am on mino but to date my doctors won't support my use of Benicar. I am showing them the chart on BP drop from the questions and answers. I am sensitive to increasing my mino from 25 mg every other day, due to severe herx that I experienced. I am also reluctant in increasing my dosage due to possible scarring of my eyes and other organs. Any doctors yet in the Denver, SE Wyoming area?
 
 Re: **MUST HEAR: CBC Radio- The Bacterial Revolution**
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-04-05 18:15

Ruth,

I think we've discussed the new psoriasis cream being marketed but I can't think of it's name. If I remember correctly, it is an immunosuppressant. If your kerotinocytes are infected with pleomorphic bacteria, it will take more than a cream that suppresses the immune system to get rid of them.

We recommend applying Ketoconazole 2% cream to unavoidably exposed areas such as your face when you must go out during the daytime. Ketoconazole 2% cream stops production of 1,25-D in the skin. This doesn't treat the underlying problem by killing the bacteria but it does help keep the level of 1,25-D down so that the immune system can do its job.

There are still no MP knowledgeable doctors from Wyoming or Colorado on our list. I hope you will keep trying to educate your doctors and if they continue to say no that you will search locally for someone more open-minded.

Best,

Meg
 
 Re: **MUST HEAR: CBC Radio- The Bacterial Revolution**
Author: Nick Karas (---.dsl.chcgil.ameritech.net)
Date:   02-13-05 21:46

I was told that iI had a mild case of sarcoid about 2 years ago. I was put on prednisone for about 3months and have had no problems since then. Is their something I should be worried about. Anything I can do follow up on this. Since then I have not even gone back to the doctor with even a sore throat problem.
Thanks,
Nick
 
 Re: **MUST HEAR: CBC Radio- The Bacterial Revolution**
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   02-13-05 22:07

Hi Nick,

Welcome to SarcInfo. I'm glad you are feeling so well. Since sarcoidosis is caused by Cell Wall Deficient bacteria and prednisone does nothing to eliminate those bacteria, it is only a matter of time before you relapse. The largest study of sarcoidosis in this country recently revealed that no one went into remission whether or not they were treated with prednisone. Click on the NIH brocher at the top of this page for more info.

Please take a look at the list of symptoms in this thread to see if any look familiar.

The most important thing you can do to follow up on your apparent remission, is to have your D-metabolites tested. Then post the actual numbers on this website so we can help your doctor assess them. They are often abnormal even when they are within the lab ranges.

Best,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
 
 Re: **MUST HEAR: CBC Radio- The Bacterial Revolution**
Author: Linda Bockhold (---.nyc.res.rr.com)
Date:   04-03-05 15:58

Is it unlikely that Fungi stain would be positive when AFB stain is negative?
 
 Re: **MUST HEAR: CBC Radio- The Bacterial Revolution**
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   04-03-05 17:30

Linda,

Common diagostic tests for sarcoidosis include a tissue biopsy evaluated with acid-fast bacilli (AFB) stain, fungal stain, and bacterial and fungal culture. But to answer your question, fungal stains detect fungal infections such as histoplasmosis, and fungi would not react to AFB stains. So it is possible to have a positive fungal stain and a negative AFB stain.

Here is a link with information from the Mayo Clinic that contains an explanation of fungal stains and cultures in Histoplasmosis.

Belinda

*MODERATOR* Dx: FM 80's, sarcoidosis '01; Lung, skin, spleen, liver and neuro. Refused Prednisone. 7/02 1,25-D 61.1, 25-D 14.3. MP since '02 PhaseIII with symptoms gone, slight Herx. Improved PFTs, CTs, X-ray, energy and stamina. I walk 3-4 mi daily now
 
 Re: **MUST HEAR: CBC Radio- The Bacterial Revolution**
Author: Lynne Guimond (---.citenet.net)
Date:   08-11-05 21:09

Hi Meg or Lottie;
Do you know if there is any way of getting a video of this.Thanks
 
 Re: **MUST HEAR: CBC Radio- The Bacterial Revolution**
Author: Lynne Guimond (---.citenet.net)
Date:   08-11-05 21:11

OOOPS... I meant a tape or CD Lynne
 
 Re: **MUST HEAR: CBC Radio- The Bacterial Revolution**
Author: Lottie (---.proxy.aol.com)
Date:   08-11-05 21:19

Lynne,

Not that I know of. Perhaps someone else knows of a source.

Did you obtain a set of the DVDs from our Chicago Conference? There is a wealth of information on them.

You may purchase DVDs of the Chicago Conference at the AutoImmunityResearch.org

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 Main Menu   Newer Topic  |  Older Topic 


This is an archive site, membership and posting are no longer allowed.

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

Go to the Sarcoidosis Information Discussion Info Message Board Forum

Sarcoidosis

Privacy Policy -(C)Copyright 2002-2007 by the Autoimmunity Research Foundation   (email webmaster)
All rights reserved - Powered by Linux and Phorum