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 The material here provides useful background, but much of it is now out-of-date.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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 ACE levels and fibrosis
Author: Ken (---.proxy.aol.com)
Date:   03-21-02 17:30

As granulomas are formed (surrounding an invading agent whether real or percieved) in what was previously healthy tissue, the inflamed tissue creates an ever decreasing size of blood delivery. This "choking" of the blood supply is what causes Angio-tensin Converting Enzymes (ACE) to increase and signals the adrenal glands to increase the body's form of anti-inflammatories. The design is perfect except in the case when the body can not perform the reduction in inflammation as a result of the invader remaining. The inflammation remains, the ACE is high, blood delivery is low and eventually the granuloma tissue becomes non-functioning as the result of insufficient blood flow. Fibrosis, scar tissue, is the result which does show up on x-rays/ct-scans and to date is irreversible. There are European studies using medications that prevent the creation of new blood vessals which would eliminate granuloma formation and there are USA studies that return fibrosis tissue to function again. ACE only identifies the granuloma activity at the time of the test. You can have a sarcoid-like illness and low or "normal" ACE at the same time.
 
 Re: ACE levels and fibrosis
Author: Admin (---.gtecablemodem.com)
Date:   03-22-02 07:18

Serum ACE is often used by Doctors as an indication of active inflammation, and of the active stage of the disease.

As Ken has explained, ACE often returns to "normal" when the disease is quiescent. The genetic factors determine what is "normal" and unless your Doctor checks your ACE Genotype, the indications of active disease will only be good for that 25% of people who have the DD genotype, the one with the highest 'normal' values of ACE (not quite a true statement... but close enough...)

Most people think that serum ACE reflects the changes in the body, whereas in fact it causes many of them.

ACE, or more particularly Angiotensin II, must be aggressively treated in every sarc patient (IMO). This is easy and safe to do. If your doctor does not agree, I would be happy to have a chat with him/her, and send along copies of some literature dealing with both ocular and general nethropathy.

..Trevor..
 
 Re: ACE levels and fibrosis
Author: pat witzmann (---.proxy.aol.com)
Date:   05-23-03 18:32

How can my ace level be normal yet the CT scan shows something different? A year ago my ace level was 18 yet I was in stage 11 sarcoidosis. I am now 6 with the ace level. I understand 18-57 is a normal range. But for me nothing about this disease has been normal. I've had alveolitis, yet a low ace count? Thank you for any information you can send.
 
 Re: ACE levels and fibrosis
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-23-03 20:12

Pat,
Serum ACE is usually not a useful measurement because it is affected by steroids (even inhaled and skin lotion-steroids) and also by blood pressure drugs called ACE inhibitors.

The level of serum 1,25-dihydroxyvitamin-D divided by the 25-hydroxyvitamin-D is bar far the most stable indicator of the immune disease state. Click on the tutorials at top left of this page to learn more.

..Trevor..
 
 Re: ACE levels and fibrosis
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-23-03 21:34

Hi Pat,

Welcome to SarcInfo. It's not unusual to have sarcoidosis with a normal ACE level. Approximately 40% of patients do so doctors do not consider it a definitive test. That is why they did your CT scan. Have you had a biopsy?

We don't send information but there is a ton of it on this site. Start by reading the patient tutorials on the top left of this page to learn what causes sarcoidosis and how you can put it into remission.

The starred threads on the phorum are especially important to read. There are also links to articles at the bottom of the page and papers for your physician at the top right of the page. You can use the search feature of the site to type in specific words to find more information. Be sure to change the setting to all dates to get the most thorough search.

Anytime you see something in bold print you can click on it to get more information. You may need a medical dictionary to sort through some of the info but you can find one online.

If you have more questions, don't hesitate to ask.

Meg
 
 Re: ACE levels and fibrosis
Author: John (---.oc.oc.cox.net)
Date:   05-23-03 22:10

Boy, I must feel good. I am talkative tonight!

My ACE levels are normal and always have been. I think the ACE level test is a good example of misinformation that most medical professionals have about Sarc. The hazy knowledge that most specialist outside of pulmonary doctors is responsible for a lot of patient confusion. Every specialist that I went to ask about my ACE level as if that had some magic meaning. At least my pulmonist knew that this was not a very good indicator but nobody else did.

3 years before I was diagnosed with Sarc the the biopsy of the reddish patch on the top of my head came back from the lab "granuloma characteristic of sarcoidosis". The derm however discounted that as being "unlikely as most sarc patients are African American". Another of the common misconceptions I have heard. HE did suggest that if I was concern about it that I should have a lung x-ray which I declined. Bad choice due to misinformation.

I don't really blame the doctors that much mostly due to the state of medicine these days with managed care. And this is also a fairly rare disease although I suspect that it is highly underreported as well to the lack of definitive test to confirm sarc.

I have a speal that I give to medical professionals I deal with these days giving the basic rundown of what it is. Hopefully I will be able to relate how I was successful in controlling it with this therapy next visit.
 
 Re: ACE levels and fibrosis
Author: Ramon (---.MIATFLAD.covad.net)
Date:   05-24-03 06:21

I been diagnosed with Sarcoidosis thru a biopsys, and I'm desperate to find a pulmonary doctor, in the Miami area, specializing in this area.

Thanks!
 
 Re: ACE levels and fibrosis
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-24-03 08:26

Hi Ramon,

Welcome to SarcInfo. The number of specialists who are familiar with Trevor's protocol for putting sarcoidosis into remission is very small. It's unlikely that you will find a doctor in the Miami area or anywhere else who is knowledgeable about using ARBS and antibiotics. It's just too new. There are other websites that can direct you to doctors who have treated a lot of sarcoidosis patients, usually with steroids. It has been our experience, however, that the open-minded and innovative doctors are not these 'experts'. Most of us, with the help of this website, are educating our primary care physicians who have agreed to help us. So if you have a PCP who knows you, that is the best place to start.

Please spend some time looking around SarcInfo. Read the patient tutorials and physician papers at the top of the page. You can print out the information for your doctor. The links to articles at the bottom of the page and the starred topic messages (threads) are important also.

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.

Let us know if you have any other questions and good luck with your doctor search.

Meg
 
 ace levels
Author: Felicia (---.fl-miami0.sa.earthlink.net)
Date:   06-25-04 14:54

I am in the process of testing for sarcoidosis my ace level was 88 one time and then 93 another I have been having a lot of trouble with my eyes, lot of flare ups. My x-ray was normal but my brain mri was abnormal. My doctors are not saying much, but meanwhile I am still hurting what can I do.
 
 Re: ACE levels and fibrosis
Author: Meg (---.188.240.36.euc.wi.charter.com)
Date:   06-25-04 21:04

Hi Felicia,

Welcome to SarcInfo. Your symptoms are consistent with sarcoidosis. The most important test for you to have done is the D-metabolites. There is info on how to do that in the patient tutorials.

The Marshall Protocol will relieve your symptoms and put sarcoidosis into remission safely. Please read the tutorials and print out the papers for physicians for your doctor. There is also essential information in the starred threads.

Let us know if you have any questions that aren't answered in these papers.

Meg
 
 Re: ACE levels and fibrosis
Author: J.B. (---.proxy.aol.com)
Date:   07-26-05 16:44

Do you know what USA studies are being done to turn fibrosis tissue to function again? Thanks
 
 Re: ACE levels and fibrosis
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   07-27-05 09:01

J.B.

No. Right now too little is known about fibrosis to consider how to reverse it. The clinical trials right now are focusing collecting tissue samples and databases of people with fibrotic diseases.

Doctors who specialize in treating sarcoidosis do not have a good way of determining what is fibrosis and what is active inflammation. So our best advice is to focus on treating the cause of the disease: intracellular bacteria and stopping granuloma production by reducing vitamin D in your body. Hormone D (1,25-D) is required for granuloma production.

You will have to be pro-active to recover from sarcoidosis, but it can be done. Are you still looking for a doctor to help you implement the MP? Are you restricting your vitamin D intake by mouth and exposure of your skin and eyes to light? Have you ordered the NoIR glasses?

This is how I look at my diagnosed pulmonary fibrosis:
It means I will not likely ever be a marathon runner, triathlete or compete in the the Tour de France. But then... I was never going to do those things anyway.

Fibrosis did NOT stop me from recovering from sarcoidosis (I used to be on supplemental oxygen) and it doesn't stop me from doing the things I want to do now -- like walking six or seven miles each day, climbing stairs without shortness of breath, and walking up hills without getting winded.

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: ACE levels and fibrosis
Author: Frank (---.dnvr.qwest.net)
Date:   08-19-05 20:39

Well, I think this is best place for this post. So here goes. I was diagnosed by mayo clinic with sarcoidosis just about a week ago. I am 39 years old, and had been very healthy and looking back the only sign till now was an increased resting pulse rate between 2000 and present. My story starts Nov 2004 when I had my first real cardiac symptoms of irregular heart beat, palpitations etc.... My other internal symptoms (then and now) are the lung infiltrates and nodules (although my pulmonary functiion test is normal), enflarged lymph nodes, enlarged spleen with attenuation lesions, complete heart block and now sinus tachycardia (borderline), frequent palpitations associated with pauses in cardiac rhythym (possibly missed beats). I also have fatigue and tachycardia with mild exertion, 24 hours ringing of ears (this symptom only 2 months old), Lermitz sign (shock down body with turn of head), intermittent numbness of bottom of feet, left side chest pain that can last for hours, right side chest pain with cough.
I ended up with complete heart block, a pulse of 39, and had a pacemaker implanted on May 18, 2005. After the pacemaker did not help with many of my symptoms, my cardiologist recommend visiting Mayo Clinic. I had a mediastinoscopy, and the surgeon said he had not seen so much fibrosis and scarring in the chest in his 25 years. He could not get at all the interested lymph nodes due to the fibrosis, and the ones he did get out where like 'pearls' (calcified/hyalinized). The differential diagnosis was between old burnt out histoplasmosis (I caved in late 80's early 90's) and sarcoidosis. After the pathology has yet to show any fungi or bacteria, the opinion of the Pulmonary and Infectious disease specialists is sarcoidosis. The pathologists stated that the voluminous granulomas were not typical of sarcoid. The did not find the non-caseating granulomas. Bronchoscopy early this year did not show sarcoid type granulomas as well. What is the opinion of this site on having sarcoid but no evidence of the non-caseating granuloma?

Thanks, Frank
 
 Re: ACE levels and fibrosis
Author: Lottie (---.proxy.aol.com)
Date:   08-20-05 01:09

Frank,

Welcome to SarcInfo.I realize that you have a lot of questions. I think that you will find that most of them are answered on this site, and on our sister site, MarshallProtocol.com.

Please read through this thread with information about Sarcoidosis at our sister site, marshallprotocol.com for a better understanding of some of the issues about diagnosing and treating Sarcoid. Let us know if you still have questions.

We now know that Sarcoidosis is caused by cell wall deficient (CWD) bacteria which have not only learned to hide from but to live within the immune system that is supposed to be killing them. The Marshall Protocol is the only treatment presently in use that will assist the body in killing these bacteria that are the cause of Sarcoidosis. Sarcoidosis does not go away on it’s own, or with the standard treatments such as Prednisone which only shuts down the immune system. The immune system is the body’s only weapon against the bacteria. With it shut down the bacteria are allowed to multiply without anything to stop it.

Patients with Sarcoidosis and other Th1 illnesses are unable to regulate the production of vitamin D, and you will probably recognize many of the symptoms here at this site, Hypervitaminosis-D Symptoms (Hypervitaminosis-D refers to an excess of vitamin D)

There is information on the D-metabolite tests here…

D METABOLITES TESTS

When you get the results, you should then post the actual numbers from the test results here on SarcInfo for analysis. The d-ratio will show whether or not you have a Th1 illness which can be treated with the Marshall Protocol. Sarcoidosis is only one of several illnesses which can be treated with the MP, so it isn’t necessary to get a specific diagnosis of Sarcoidosis to know that the MP will help you regain your health.

There is information on some of the other Th1 illnesses that can be treated by the MP here…

Is the MP an Applicable Treatment for my Disease?

You asked why the doctors at Mayo Clinic didn’t perform these tests. The Marshall Protocol is new, cutting edge science. Many doctors and specialists know very little about Sarcoidosis, much less the cause. Many of them are not very open minded, and are unwilling to accept the scientific information that has become available more recently. Many still rely on the information that the NIH gives out.

There is information here about the study that the NIH spent years and a good deal of taxpayers money on.
Brochure on the NIH ACCESS Study

Cardiac Sarcoidosis can cause many arrhythmias, including the ones that you have described. I have cardiac involvement, fortunately I haven’t had all the problems that it sounds as though you have had. I have had a few episode of bradycardia with a pulse down to about 40, but more often tachycardia with a pulse up to 200, usually around 150. An echocardiogram revealed the inflammation, and the fact that I have a reduced output.

I have never had an abnormal chest x-ray, and when I was having symptoms of shortness of breath, low blood pressure, a fun symptom was “stand up-fall down” (I almost passed out several times), PVC’s (skipped beats) and rapid pulse that was almost constant… I finally had a CT scan with dye that showed enlarged lymph nodes.

I didn’t have the fibrosis that you describe, and they were able to get to the “target” lymph nodes during a mediastinoscopy which showed non-caseating granulomas. I suspect that if they had been able to get to the ones they wanted to, your biopsy would have shown the same. Your symptoms are also part of the diagnostic process.

I did take Prednisone for five years, and last year, an echocardiogram showed that my heart’s inflammation was increased, and that my cardiac output was reduced… while I was on Prednisone. Fortunately, my Primary Care Physician, who couldn’t get any input from my cardiologist asked me to research cardiac Sarcoidosis, and I found this site. I was also fortunate that he saw that the MP makes sense, and together he and I are working towards my recovery.

You wrote in another post concerning the… “use of Benicar to treat arrhythmia, but I've recently read that a side effects of Benicar can include fast or irregular heart beat, palpitations, and chest pain. What am I missing. thanks,”

I believe that you have misunderstood what Benicar is used for in the Marshall Protocol. Benicar is not used to treat arrhythmia, but is an integral part of the MP. It allows the immune system to find and kill the bacteria causing Sarcoidosis. Along with avoiding vitamin D and sunlight, low doses of antibiotics are taken at intervals of every other day. Altogether, the MP will allow you to get well. When the underlying cause of your symptoms is removed (the bacterial infection) the symptoms will also improve.

It also serves to help reduce inflammation, and protect the body’s organs from inflammation that can occur when the bacteria die, and release their toxins.

How does Benicar work? Why is it superior to other ARBs?
I hope you will read the information here, starting with the patient tutorials in the upper left hand corner, and will read and print out the physician tutorials for your doctor.

There are SUGGESTIONS TO GET YOUR DOCTOR ON BOARD WITH THE MP on our sister site, MarshallProtocol.com.

The following forums are required reading before you begin the Marshall Protocol:

ESSENTIAL INFO ABOUT THE MP

Marshall Protocol FAQs

There is information there about avoiding vitamin D, and sunlight, which will help you to feel better while you are learning about, and waiting to start the MP.
I will be sending you additional information by email. Please feel free to ask questions about anything you still need help with after reading the information.

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
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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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