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 The material here provides useful background, but most of this site is now out-of-date.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


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 ** Alert-Cholesterol Drugs cause Breathing Difficulty **
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-10-02 10:56

Lipitor, Pravachol, Mevacor, Zocor, Lescol, lovastatin, simvastatin, pravastatin, atorvastatin, fluvastatin and cerivastatin

These cholesterol drugs (called Statins) have been shown to cause Lupus and pneumonia and they may exacerbate other immune diseases (like sarcoidosis). Take a look at KaitlynK's experience. But they have also been proven to cause generalized muscle pain and failure.

Most Sarc patients have elevated LDL Cholesterol levels and decreased HDL levels.Click here to read how this is a byproduct of the Sarcod inflammation itself. Some Doctors treat elevated LDL Cholesterol using a class of drugs called "Statins", and because the cholesterol levels do not fall, may increase the dosage.

Dyspnea (pain while breathing) is one of the problems caused by these drugs. They also cause generalized muscle pain, everywhere in the body. But a sarc patient might confuse the Dyspnea symptom with being from the sarc, while it is actually from the Statin. Please spread this information around, as continued use of statins will cause continued muscle damage.

The Scripps Mercy Hospital website (click here) explains the muscle weakness/failure on separate pages for Doctors and Patients. Make sure you print out the information for Doctors and send it to Doc so he/she has time to read it before your next appointment.

The American College of Cardiology issued a health alert on this topic. You can read it by clicking this link.

In my opinion, any sarc patient on Statins who is experiencing any muscle problems whatsoever should INSIST on being given a different therapy, preferably ARBs. The Angiotensin Receptor Blockers (ARBs) are safe drugs known to have a significant cardioprotective action, and you should suggest that your Doctor considers these. Our research has already reported significant improvement of Sarc symptoms using frequent dosing of ARBs. You can read about it at this link.

Cervistatin has now been taken off the market because people have died from muscle failure caused by it. Researchers are now finding that all of the statins can cause muscle failure and weakness, leading to pain and weakness in the muscles throughout the body.

Although the risk of muscle damage from the Statins is not very high in the general population, the list of drugs that make the effects worse include just about every drug commonly prescribed for sarcoidosis patients. That is why I am raising this to 'Alert' status - IMO, sarcoidosis patients are at extreme risk of serious complications.

I expect that nearly every sarc patient is going to experience pain as a direct result of taking Statins. This is because the rate of myalgia starts quite high (7%-14%), and the pain is exacerbated by all the common sarc drugs.

In particular, the following sarc drugs make the Statins more likely to cause problems
1. Prednisone and Steroid Inhalers
2. Methotrexate and Imuran
3. Antimalarials such as Cloroquin and Plaquenil
4. Thyroid preparations

The full list can be found in the table halfway down this page

Make sure you give Doc copies of the papers referenced in the Cholesterol and Sarc thread that explain how Cholesterol almost always measures high in Sarcoidosis. It is most likely that you do not need any statin treatment at all. Discuss this.

Although Statins are not yet recognized as a major problem in the USA, my personal opinion is that this is because doctors in the USA tend to overlook and ignore pains and muscle problems without investigating them. The World Health Organization reports a level of complaints (worldwide) 100 times greater than that reported in the USA, even though the one of these drugs was taken off the US market because of deaths due to the muscle failure.

..Trevor..

 
 Re: ** Alert-Cholesterol Drugs cause Breathing Difficulty **
Author: John Dresser (---.client.attbi.com)
Date:   03-19-03 11:37

Hmmmmmmmmmm...........I have been taking Zocor for 3 or 4 years for my high cholesterol.

I recently posted my history on the general questions thread.
I am very concerned about breathing problems, muscle and joint pain and weakness.
My former sarc docs say I have been clear of sarc for 13 years.......and the above problems are cold weather induced asthma, and aches and pains are normal because I am getting old! (51 yrs)

John

 
 Re: ** Alert-Cholesterol Drugs cause Breathing Difficulty **
Author: norman wetmore (---.client.dsl.net)
Date:   05-10-04 12:30

Hi Trevor.........
I'm a bit tired and foggy as I write this. I think, to be honest, it is the Benicar that is doing it. I get very dizzy sometimes - like almost ready to fall down. I just measured my blood pressure and it is 98/57. Doc said that you'll know when your blood pressure is too low because you will get light headed. I am taking 10 mg 3x a day.

Several questions (sorry to bother you so much):

Is 10 mg 3x a day too little to derive benefits from the minocycline? I took a 50 mg pill ( the 3rd one so far). Also, this feeling I am having has been with me prior to taking the M , so don't think it's a herx thing. I seem to be having a hard time with this Benicar!!

Very strange indeed that I just saw a cholesterol thread. I think I might have been a bit hung over (sorry to admit - lol ) when I had my blood tests, and not sure I did the 12 hour fast beforehand, but my cholesterol was 219, with my ldl being high and my ratio high, ALSO...my triglycerides were through the roof ( 398) and wasn't sure if this was from drinking or the sarc or not. THis concerns me VERY MUCH! I have since been REALLY GOOD and slowing WAY DOWN w/ the drinking and going to the gym to help it. Also, I think my diet is pretty good - no fried foods, almost no junk foood, I eat salads, oatmeal, no read meat, etc. Any thoughts ???

 
 Re: ** Alert-Cholesterol Drugs cause Breathing Difficulty **
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-10-04 12:50

Norman,
Our latest paper explains the antibacterial actions of Benicar.

Dizzyness is not due to low BP (at least for sarcies). It is due to fluctuations in the level of 1,25-D. I would suggest that the CORRECT dose of benicar might actually reduce your dizzyness. How long since you tried that?

Triglycerides indicate sarcoid inflammation in the liver. Doc may try to tell you it was your drinking - you need to stare him straight back and say that you have an often-fatal disease called sarcoidosis, which has the habit of destroying livers, and please can he/she take that into account

..trevor..

 
 Re: ** Alert-Cholesterol Drugs cause Breathing Difficulty **
Author: Jenny Biddle (---.proxy.aol.com)
Date:   05-10-04 16:15

Hi Trevor!

I am the person who posted a couple of weeks ago with the triglycerides
at 509! I saw your statement above that "triglycerides indicate sarcoid
inflammation in the liver", and I just had to ask your opinion about
something that I have been experiencing occasionally, and has come back
as part of my Herx reaction. I occasionally have the sensation that I can
only describe as feeling "overstuffed" (like after a big Thanksgiving dinner),
and it increases my shortness of breath, especially if I bend over for some-
thing. I had a CT scan last spring, and since it didn't show any signs of
fluid build-up, I have had 4 doctors tell me that I only have "gas". Last
spring my triglycerides were 263 and my liver enzymes were slightly elevated, but I was told that I just had a fatty liver. (One of the doctors
that diagnosed the "gas" and fatty liver was a gastroenterologist.) I still
can't help feeling that there is something more going on. I do get gas
occasionally, but it is not necessarily when I have this feeling of being
"overstuffed", and when I am experiencing this sensation I often am not
aware of any gas. It seems to me if I had that much gas, I would know it!
I would appreciate your opinion when you get the time to respond.

By the way, thanks for your new paper! It's way above my head, but I think
it is just the kind of information that my doctor was looking for to make him
feel more justified prescribing the Benicar for his sarcoidosis patients. I sent
him a copy today.

Thanks -

 
 Re: ** Alert-Cholesterol Drugs cause Breathing Difficulty **
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-10-04 17:35

Hi Jenny,
Sarcoidosis usually affects the intestines, and 'gas' is something I always used to suffer badly from. When you get to the third phase of therapy (after 9 months or so) you will start to see some changes in the GI area.

'Gas' can be seen on your chest xray. The stomach is on the right (of the xray) just below the diaphragm. Is it white (filled with air) or is everything below your diaphragm non-white and tissue?

..Trevor..

 
 Re: ** Alert-Cholesterol Drugs cause Breathing Difficulty **
Author: Jenny Biddle (---.proxy.aol.com)
Date:   05-10-04 17:53

Hi Trevor!

Thanks for answering so fast! I don't have copies of my chest x-rays,
and I don't remember whether the stomach area was white or not.
I was wondering if somehow there could be fluid in my abdomen, and
yet it not show up on my CAT scan. What I feel really doesn't seem to
go along with what I occasionally experience in the way of gas. I know
that I must have some pretty significant liver involvement if my triglycerides
are so high, so I was just wondering if there could be a back-up of fluid
into my abdomenal cavity. Whether I do or not, I know the answer is to
just be patient and keep on going with the Marshall Protocol!

Thanks again!

Jenny

 
 PILLS AND CAT SCANS
Author: FRANK (---.net793.lv.sprint-hsd.net)
Date:   06-15-04 22:03

WOULD PILLS TAKEN 3 TO 3 1/2 HOURS BEFORE A CAT SCAN SHOW UP IN THE STOMACH?

IF SO, WHAT WOULD THE IMAGE LOOK LIKE?

WOULD PILLS LOOK LIKE PILLS?

CAN A CAT SCAN BE ALTERED OR TOUCHED UP?

THANK YOU FOR ANY INFORMATION YOU CAN SENT ME.

 
 Re: ** Alert-Cholesterol Drugs cause Breathing Difficulty **
Author: Meg (---.188.240.36.euc.wi.charter.com)
Date:   06-15-04 22:31

Frank,

Welcome to SarcInfo. Do you have sarcoidosis?

Your question is puzzling. Can you tell me why you are asking?

Meg

 
 Re: ** Alert-Cholesterol Drugs cause Breathing Difficulty **
Author: John Dresser (---.csr-wy.client.bresnan.net)
Date:   06-21-04 09:51

Follow up/ results - (the second post on this thread is mine)

After stopping Zocor meds for high cholesterol March 03, I noticed improvements in some of my sarc symptoms......most notably, ongoing jaw inflamation connected with a one year old root canal pretty much dissappeared after about 3 weeks! (Similar to Trevor's experience).
Makes me wonder if I really needed the root canal to begin with! It all started with a crown that broke and needed replacement.

I didn't really do anything else as far as the MP for the next 12 months, as I thought I was feeling quite well by comparison to previous years. I am now 4 months into the MP.

My doc did not hesitate to stop Zocor after reading some of the Sarcinfo pages.

John Dresser

 
 Re: ** Alert-Cholesterol Drugs cause Breathing Difficulty **
Author: Jane (---.dialup-isdn.cavtel.net)
Date:   12-12-04 11:50

I was diagnosed with sarc in Jan. 'o4, following a lung biopsy which took place from the results of a lung x-ray in 12/03. I have sarc in my lungs, liver and spleen. I've hard high (over 500+) bad cholesterol and tryglycerides for over 13 yeas (I'm 58 now) and have been on Zocor for @ 8 yrs. all of my #s are OK now with Zocor. Additionally, I'm on no treatment for the sarc but have CT scans every 6 mos. I'm now having breathing problems and pressure in my chest and am tired a lot. Also, I have fibromyalgia, but it's been in remission. I'm female, 6th gade teacher, Everyready/old Girl Scout type and not a winer. I don't like the idea of taking prednisone in the future. I have a Doc appt this week and I'm taking this info in with me. Thanks, Jane

 
 Re: ** Alert-Cholesterol Drugs cause Breathing Difficulty **
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   12-12-04 14:29

Hi Jane,

Welcome to SarcInfo. I'm glad to hear that you are not on prednisone. Fibromyalgia is not a disease but a syndrome (collection of symptoms). Many sarc patients also have 'fibromyalgia'. Since it goes away with the Marshall Protocol, we conclude that it is just another aspect of sarcoidosis.

I'm sure you read the first post in this thread so you know that Zocor may be causing your increased breathing problems due to muscular weakness. High cholesterol and triglycerides is due to sarcoidosis inflammation and will resolve when that inflammation subsides. A low carbohydrate diet may also help improve your lipid profile.

You will need to be familiar enough with the MP to persuade your doctor to let you try it as he is unlikely to have heard of it yet. At the very least, you should expect him to show an interest in the scientific papers for physicians and order the D-metabolites tests. In this MP.com forum a member offers suggestions to get your doctor on board with the MP.

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

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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

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Sarcoidosis


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