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 The material here provides useful background, but most of this site is now out-of-date.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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 Antibiotics reduce Heart Attacks and Death
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-04-02 17:27

A London Hospital has just completed a large clinical trial, where patients admitted for myocardial infarction or unstable angina were treated with a 1 week course of antibiotics. Click here to read the summary.

The antibiotics reduced mortality (death and re-admission) by 36%.

This occurred even though the two microbes Helicobacter Pylori and Chlamydia Pneumoniae which the Doctors had thought might be responsible for the heart attacks, were not in fact causing them.

Some other unidentified microbes were responsible, yet the antibiotics worked, even though they had only been optimized for the Heliobacter and Chlamydia strains.

So it is possible that a more concerted antibiotic treatment may have given an even better remission rate.

Still, a 36% reduction in cardiac mortality is an incredible achievment. Previously we suspected bugs were behind Arthritis and several other diseases - but Heart Attacks????

Persuade your doctor to try some low-dose Minocin ASAP - just two months of 100mg every other day may change your life... How much more evidence does there have to be?

..Trevor..
 
 Re: Antibiotics reduce Heart Attacks and Death
Author: caroline (---.win.org)
Date:   09-09-02 16:44

Hi Trevor,
This is very interesting as my husband is as heart attack survivor. Why does this article specify different antibiotics such as amoxicillin (a drug from the penicillin family) while minocin (a tetracycline drug) is recommended for sarcoid? I am curious. I had a lot of penicillin as a child til i became completely immune to it but tetracycline works. No one has been able to explain the difference. Why not hit sarc hard with a drug like Keflex?
Caroline
 
 Re: Antibiotics reduce Heart Attacks and Death
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-09-02 20:19

Caroline from MO,
The types of bugs that have been found in sarcoid granuloma (so far) are a special type of bug. They live inside cells. Many antibiotics have difficulty penetrating the cell wall (epithelium). The tetracycline family does it well, and the three variants (tetracycline, minocycline and doxycycline) each work in a slightly different way. That is why sometimes one will be more effective than another.

Choosing the correct antibiotic really is a science. Click here to read an article about how researchers found which antibiotics work best against the Rockettsia Felis, another cell-living bug that is spreading here on the West Coast. They used DNA techniques to find it was susceptible to "doxycycline, rifampin, thiamphenicol, and fluoroquinolones but not to gentamicin, erythromycin, amoxicillin, or trimethoprim-sulfamethoxazole (Bactrim)."

The chart in the complete article shows that doxycycline worked best of all, the other drugs were less effective, but still did the job reasonably well. The researchers did not test Minocycline.

The researchers planning the cardiac study had chosen the antiobiotics amoxicillin, metronidazole, azithromycin, metronidazole, and omeprazole. Combinations of antibiotics (as used in this study) are often more effective than individual drugs because they each can simultaneously target different stages of the organism's life cycle.

But the bacteria that these researchers had expected were not actually found in the patients! Nevertheless, whatever bugs were causing the problem, and they may have been different in each patient, they reacted well enough (to just a one week course of them) so that 36% of the patients were spared more serious cardiac illness. That is an amazing success rate for such a simple course of therapy!

..Trevor..

ps: I have seen no data on how Keflex (Cephalexin) works against cell-living organisms. Don't use it for this purpose. It is usually used to attack: S. pneumoniae, H. influenzae, staphylococci, streptococci, and M. catarrhalis
 
 Re: Antibiotics reduce Heart Attacks and Death
Author: Lana (---.twave.net)
Date:   09-15-02 21:37


Trevor, I have laryngeal sarcoidosis - a rare form with very little support data. I've been on prednisone since march of 99 - my Dr. is insistent that I wean off, consequences being what they may. My larynx has been less that .5 mm with 1.25 cm being a norm. So I can't tolerate any swelling or even a potential allergic reaction. I'm down to 5 mg pred every other day and my breathing ability is tolerable but not optimal. My Dr. consented to a trial with minocycline and I was very excited about it but about 1 hour after taking it, I began to experience side effects - prickling, a flush in the chest and neck area, dizziness and lightheadness. I knew these were possible but after experiencing them, I believed my throat would close off from swelling so I ended up in the emergency room in case I needed to be trached. Do you hear of people experiencing these side effects and if so do they continue taking the antibiotic? I've always been able to tolerate meds with not much of any side effect so this surprised me even though it was on the med info sheet.
I managed to get down to 2.5 mg pred every other day but my muscles and joints went haywire and I have been in so much pain! A very acute reaction to what I believe to be related to prednisone withdrawal. My Dr. said I came down too fast and bumped me back up to 5 mg every other day.
God bless you for working with us personally on this problem!
Lana
 
 Re: Antibiotics reduce Heart Attacks and Death
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-16-02 05:14

Lana,
Yes, there is a long list of reported side effects with Minocycline, many of them like you were reporting: lightheadedness, flushing, dizzyness. Some may be due to the drug itself, but many are due to the Herxheimer effect

Herxheimer is described at this URL and there is more information at this link (requires Adobe Acrobat Reader and you need to scroll down to see page one).

As the antibiotic begins to do its job, the organisms it is killing release endotoxins into the inflamed tissue. The lipopolysaccharide in the endotoxin will immediately cause the granuloma to release more 1,25-D, which then acts within minutes on your body, especially on local inflammation and local muscles (in the Larynx). The half-life of 1,25-D is a very short 4-6 hours. It acts very fast indeed and then departs (until next time). Although in this case it will be continuously manufactured as long as the bugs are dying and releasing lipopolysaccharide. The total effect of the endotoxins may last for longer (several days) however, depending on the rate of transfer of the biochemicals between the tissue and the circulation.

The half-life of Minocycline ranges from 11-17 hours, so it also clears the body fairly quickly. The beauty of Dr Joe Mercola's "every-other-day" Minocin treatment is that the drug concentration builds up, and then has time to leave your body before the next dose comes along (in 48hours) to attack the bugs again.

My own guess is that you were experiencing Herxheimer, based primarliy on the speed of the response (you said "about 1 hour")(which suggests local tissues) and the fact that it apparently did not worsen while you were in emergency. Drug reactions usually stay around and/or get worse for at least much of the half life of the drug (11-17 hours).

What was your 1,25-D level? That might give a clue as to how much of a knife-edge you may be on, with respect to its actions on inflammation and muscle. Your 25-D would be interesting too. It would be a very important next step to get these tests done, if you haven't already. After that you might look for a specialist who is familiar with treating Infectious Diseases (Lyme, Spotted Fever, etc) and seek his/her advice and care.

..Trevor..
 
 Re: Antibiotics reduce Heart Attacks and Death
Author: Raymond P. Falkoff (---.proxy.aol.com)
Date:   09-16-02 11:43

Hello:

For years my sacrcoid stomach symptons have gotten better every time
I am on Cipro. I just finished another dose and mys tomach got much
better but now my symptoms are back.

Any Thoughts?
 
 Re: Antibiotics reduce Heart Attacks and Death
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-16-02 12:14

Raymond
Two thoughts. Firstly, Cipro and Prednisone are a dangerous combination. Read this thread for more info.

Secondly: Cipro does work against Rickettsia-like bugs, but with lower efficacy than doxycycline (and, presumably, minocycline). Cipro is promoted rather heavily to the doctors as a 'fix-all anti-biotic'.

But if an antibiotic made you feel better that is probably a sign that it is worth trying to concentrate on that area. Maybe a specialist in Infectious Diseases may be a help in figuring out the best way for you to move forward.

..Trevor..
 
 Re: Antibiotics reduce Heart Attacks and Death
Author: sara (---.51.219.151.dslextreme.com)
Date:   09-16-02 12:41

i read many reports on line of those taking minocycline developing lupus and/or lupus like symptoms that never went away! seems risky for those of us already at risk to add more problems.
 
 Re: Antibiotics reduce Heart Attacks and Death
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   09-16-02 13:27

Sara,

I can appreciate your concern. I read the reports of minocycline adverse effects before discussing it with my doctor. What I concluded after reading the reports was:

1) The risks of drug therapy have to be weighed against two things: the potential benefits of the drug and the risk of continuing in a disease state. Our disease is sarcoidosis. We know the symptoms.

2) The reports I read were of young people (teenage to 30) taking long-term minocycline for ACNE. Not a life-threatening disease. I did wonder what other factors might increase the risks of discovering lupus in this younger population.

3) The reports of minocycline-induced lupus, if they included doseage information, indicated dosages quite a bit higher than Dr. Mercola's recommended 100 mg every other day. I also noted that patients often developed the problem after being on the drug for more than a year.

4) The absolute risk factor for minocycline induced lupus I saw quoted was low, (52.8 cases per 100,000 prescriptions) about the same as the risk of getting sarcoidosis.

Since the risk of drug therapy has to be weighed against drug benefits and the disease itself, people, especially parents, want to be informed of this risk for long-term use of a drug for ACNE. That is probably why these cases received notice. I mean, where are the studies of long-term side effects of the drugs commonly used to treat sarcoidosis? This is the study that examined safety and effectiveness of minocycline in SARCOIDOSIS. It said adverse effects were minimal with doseage at 200mg/day for a median duration of 12 months. That is 4X the doseage Mercola uses for rheumatic diseases.

Belinda
 
 Re: Antibiotics reduce Heart Attacks and Death
Author: j.b. (---.proxy.aol.com)
Date:   02-11-05 20:57

My doctor has refused to give me minocin. However, I am taking sulfamethoxazole and trimethoprim until I can talk him into the minocycline.
Do you think the Bactrim or Biaxin antibotics work to get rid of the bugs?
 
 Re: Antibiotics reduce Heart Attacks and Death
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   02-11-05 21:29

j.b.,

Minocin is the brand name of minocycline. It is expensive and not any better than the generic minocycline.

Did your doctor say why he wouldn't prescribe minocycline? This drug is so safe that millions of teenagers take it long-term for acne. And the MP uses it in a pulsed schedule at very low doses.

Bactrim has some effect against the CWD bacteria when taken with the Benicar blockade in place but Biaxin has none. The antibiotics on the MP have been chosen very carefully for their efficacy and safety. They work best in various combinations to provide a synergistic effect.

When you have a minute, please add a signature line. This data, which will appear each time you post, greatly helps the moderators to answer your questions.

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: Antibiotics reduce Heart Attacks and Death
Author: Lottie (---.proxy.aol.com)
Date:   02-11-05 21:33

J.B.

First, you need to realize that the bacteria in Th1 illness are Cell Wall Deficient (CWD)bacteria. They have learned how to hide from the immune system. A functional immune system is necessary to kill the bacteria.

An ARB, Benicar, is an integral part of the Marshall Protocol. There are several reasons for it's use. One, is that it allows the immune system to find and kill the bacteria. The antibiotics assist the immune system in killing the bacteria. The other thing that the Benicar does is help protect the organs of the body from inflammation which occurs when the bacteria die.

It is possible that some bacteria are killed by the antibiotics, but most of them are able to hide without the aid of Benicar. And, the dosage of the antibiotics is important too.

How much, and how often are you taking each drug?

Lottie

PS, It would help the moderators to answer questions if you will add a signature line to your profile.

*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: Antibiotics reduce Heart Attacks and Death
Author: jb (---.no.no.cox.net)
Date:   02-13-05 15:48

I have sarcoid of the lung and I am taking 800 mg/160mg, double doze of sulfameyhoxazole/trimethoprim. Since taking this medication I have notice a burning sensation in my chest. I stopped taking it two days ago because i am afraid it may have spread to my heart. I think that the antibotic probably killed the good cells also and caused it to spread to the heart. What do you think?
 
 Re: Antibiotics reduce Heart Attacks and Death
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   02-13-05 17:58

JB,

Sulfa/Trimeth is an anti-metabolite. It weakens the bacteria by inhibiting the building blocks of DNA. Without the Benicar blockade in place, it is unlikely that it did you much good (or harm).

Your symptoms will not resolve until you can find a doctor who will help you recover with the Marshall Protocol.

When you have a minute, please add a signature line. This data, which will appear each time you post, greatly helps the moderators to answer your questions.

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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