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 The material here provides useful background, but much of it is now out-of-date.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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 Darrian Chapman, NBC Newsperson dies of sarcoidosis
Author: John L (---.avaya.com)
Date:   01-27-03 08:00

As a sarc who's found this site to be a godsend, I thought the sarc community might be interested in this. The following is taken from the NBC affiliate's website here in Chicago. Darrian was a sports newsanchor here. It's too bad the station didn't have some of the info on this site to disseminate.
(Click here to read the article on NBC Chicago)
___________________________________________________________

Darrian Chapman's Cause Of Death Surprises Co-Workers
Cardiac Sarcoidosis Hard To Diagnose, Not Commonly Known

POSTED: 8:55 a.m. CST January 24, 2003
UPDATED: 10:22 a.m. CST January 24, 2003

CHICAGO -- Despite having a heart attack seven years ago, Darrian Chapman seemed to recover well. At age 37, he was playing golf and more vigorous sports, including basketball and hockey. On the air, as an NBC5 sports anchorman and reporter, he was animated and lively.

When Chapman's heart suddenly stopped three months ago, everyone assumed it was due to his previous heart condition. But that was not the case. The actual cause of death, it turned out, was surprising and something most of us had never heard of: cardiac sarcoidosis.

Darrian Chapman Remembered


"Cardiac sarcoidosis is uncommon," said Dr. Peter Sporn of Northwestern Memorial Hospital, an expert in sarcoidosis.

Sarcoidosis is a mysterious inflammatory disease that's far more common in the lungs and skin than in the heart. The disease is practically unknown among the general public, NBC5 Healthwatch reporter Dr. Deanna Lites, said.

Andrea Wilson was first diagnosed with sarcoidosis by a doctor who did not know how to treat the disease, she said.

"I think the scariest part was when a doctor said, 'You know, we don't know what to do with you, and, basically, you have to get your affairs in order and be ready to go any minute,'" Wilson said.

But instead of giving up, Wilson found doctors who did know how to treat her. Now, seven years later, her only major symptom is fatigue. Wilson takes a number of medications. Blood tests help to determine if the treatments are working.

Lites said that even though sarcoidosis is largely unknown, about one in 3,000 Americans has some form of the disease. Most of them recover on their own, Lites said.

"But in about one-third of the cases, the course is chronic," Sporn said. "And that can be ongoing inflammation of the lung or other organs, such as the skin, eye, brain or heart."

In the lungs, the first symptom of sarcoidosis is usually a cough or wheeze, which can be mistaken for a cold. To diagnose it, doctors need a chest X-ray and a biopsy. But sarcoidosis is more difficult to pinpoint in other organs.

When sarcoidosis invades the heart, it can weaken the muscle or, more commonly, short-circuit the heart's electrical impulses, Lites said.

"For example, irregular heart rhythms or arrhythmias can develop and be life threatening," Dr. Nancy Sassower, Wilson's physician, said.

Nobody knows the cause of sarcoidosis yet, but there may be a genetic link. That's one reason why Wilson and her husband have formed a foundation to help find a cure -- before their daughter is old enough to be at risk.

"Every time I look at her, I think, 'I've got to go on, I've got to push on,'" Wilson said. "So I think if not in my lifetime, at least in her lifetime we will have a cure."

Wilson and her husband will have more information on sarcoidosis at the NBC5 Health Fair. The fair is being held Saturday and Sunday, at Navy Pier.

For more information on the disease and research being done about it, visit Foundation for Sarcoidosis Research.

 
 Re: NBC NEWSPERSON DIES OF SARC
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-27-03 08:33

It is tough to be objective when such a sad event occurs, but such deaths will continue unless something is learned from this tragedy.

Detection of Sarcoidosis at autopsy is actually quite common, and the most common cause of sudden death is cardiac myopathy. Cardiac arrythmia and failure are easily explained from an understanding of the etiology that we have outlined, but they remain a mystery to those who continue to close their eyes to what we have discovered.

I have never had any communication from "Andrea Wilson". She is soliciting donations on her website, yet I see no list there of what the money is being spent upon. There is no link from the FSR website to SarcInfo.

I have never received a penny for running Sarcinfo, or for my studies, nor have I ever solicited it. There seems to be a desire by the medical community to continue the flow of research monies to the large Sarc Research Centers, and ignore the possibility that a cure is at hand.

In my opinion, while the research monies continue to flow, the Doctors receiving those monies have little incentive to look for a cure.

..Trevor..

 
 Re: NBC NEWSPERSON DIES OF SARC
Author: Phil G (---.ivylnd01.pa.comcast.net)
Date:   01-27-03 18:34

In my opinion, while the research monies continue to flow, the Doctors receiving those monies have little incentive to look for a cure

Amen!

Phil G

 
 Re: NBC NEWSPERSON DIES OF SARC
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-28-03 11:04

John,

Thank you for sharing this information. I certainly feel emotions such as grief and anguish when I hear of instances such as this, where young people die of sarcoidosis. My heart goes out to Mr. Chapman's family and friends.

Now, I hope to not appear insensitive (and I apologize if I do) by moving to more technical matters, but I believe we don't understand how often cardiac sarcoidosis is overlooked as a cause of death. If I were to die from anything that looked like heart problems, I would expect cardiac sarcoidosis to be investigated. That is because we know I have sarcoidosis, and it has damaged my lungs. That seems so simple to me, but it may not be how things work in reality.

Look at this report about diagnosing cardiac sarcoidosis. They didn't get it right until the second biopsy, four months later.

Belinda

 
 Re: NBC NEWSPERSON DIES OF SARC
Author: Kathleen (65.121.96.---)
Date:   02-09-03 16:21

Everyone -

I can't tell you how upset I am reading the Foundation for Sarcoidosis site -
and how the main specialists in this country seem to be on the same page; unfortunately, that page doesn't help me (or you) one bit. Numerous of the physicians listed as specialists are the ones that told me that I don't have sarcoidosis, and that they could do nothing for me - except to literally, formally discharge me as a patient.

My symptoms are primarily cardiac, but without a positive cardiac biopsy (which was not even attempted), I have been dismissed. (I also have a family history of TWO immediate family members, and my positive stress thallium was also dismissed). It angers me to no end to see their campaigning for an illness they seem to neither understand, nor want to look into further, unless it's their own funded research.

"It's not likely" seems to be the best they could tell me; and dismissing me, after increasing cardiac medication, which certainly seems at odds to me.

Trevor, thank you for your unfunded, personal generosity and good will to share with us your findings and experiences, and for guiding us along the way, after I, at least, had been abandoned by "experts".

I can't say it isn't scary seeing a 37 yr old die of cardiac sarcoidosis; I am 41, and know this is a possibility everyday; it helps lessen the fear when someone, like Trevor, and all of you, support and help me; but it is so frustrating for me, and knowing there are others like me, and you, that need help and understanding and to be listened to. Trevor and you all understand the importance of the difference between our symptoms. I have a co-worker who has pulm sarcoidoisis, and we are so different, it is hard to believe we have the same illness; yet at the end of the day, our basic tests are all familiar to sarcoidosis.

Thanks for letting me vent my anger and my fear; and thank you all also for being there and accepting me, for one, and supporting me and each other.

Kathy in Wyoming

 
 Re: NBC NEWSPERSON DIES OF SARC
Author: Jan Lewis (---.lgeenergy.com)
Date:   02-10-03 07:07

Hi Kathy. I've had two physicians tell me not to return to them. One of them was an Internist who insisted that I go on steroids, which I adamantly refused. He sent me a certified letter telling me not to return. The second physician, my Pulmonary dr., told me Dec. 29, that he would no longer treat me because I refused steroids, because I knew more about the illness than he. He read the info I gave him from this website, and told me I needed to travel to a physician who understood all of this. What's to understand??? 3 Blood tests, a few prescriptions and no Vitamin D. He was more concerned about his position with the hospital (Jewish). Frankly, I couldn't stand the guy anyway, so feel he gave me good news.

He also told me I was going to die. He's told me this twice now. Fortunately, I found a physician who is willing to listen to all of this new info and help me accordingly. He's written me prescriptions and will order the bloodwork when I'm ready to do a repeat.

Hang in there. Consider going to an Alternative Healthcare specialist if you can find one.

Jan Lewis

 
 Re: NBC NEWSPERSON DIES OF SARC
Author: Caroline (---.win.org)
Date:   02-10-03 23:09

Hello Everyone,
I have remarked about the same problems Jan and Kathy speak of in other threads. I just want to make sure everyone who reads this knows the following:

The pulmonary physician that folded up my file, stood, then walked out on me,which left me sitting in the exam room,was from a internet site. She is affiliated with a major teaching hospital in st. louis and listed on this site as a sarcoidosis specialist. she walked out because i brought up the antibiotic manuscript for the second time.

a neuro from the other major teaching hospital in st. louis, didn't care to discuss antibiotics either but he wasn't outwardly rude. he just said it might warrant looking into, in time......

Jan, was the hospital you mentioned Barnes Jewish?

Trevor can never be thanked enough. How do you thank someone who gives you back your life?

Caroline

 
 Re: NBC NEWSPERSON DIES OF SARC
Author: Jan Lewis (---.lgeenergy.com)
Date:   02-11-03 06:27

No, it wasn't Barnes Jewish, but Jewish Hospital in Louisville, KY. And yes, thank you Trevor for giving me back hope when just a short 6 weeks ago, I was suffering panic attacks from my latest visit with Dr. Rouben.

Jan Lewis

 
 Re: NBC NEWSPERSON DIES OF SARC
Author: Debby Kerr (---.proxy.aol.com)
Date:   02-11-03 17:47


You might be interested to know that to add to this tragedy, he married my niece on June 29, 2002. He died on Oct. 30, 2002.

His wife, Debby Chapman, has become a spokesman for Sarcoidosis. This kind of thing may help people become more aware of this disease and may help in finding a cure and/or the best treatments possible.

We miss him greatly. I hope Debby can make a difference. I guess out of every tragedy comes something good, or inside every cloud there is a silver lining.

 
 Re: NBC NEWSPERSON DIES OF SARC
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-11-03 18:03

Debby,
Sudden unexpected death is always tragic for the wife and family members. We all think we know what Debby Chapman is going through, but I suspect her torment is much worse than even we can imagine.

What is so really tragic is that the CWD cause of Sarcoidosis was identified in 1982 and confirmed in 1996, and a relatively innocuous cure has been available all that time.

We all need to work real hard on getting the message out to every doctor (and politician) - CWD bacteria kill sarc patients. Ignoring the cause will not make it go away, it just increases the suffering.

..Trevor..

 
 Re: Darrian Chapman, NBC Newsperson dies of sarcoidosis
Author: paul prendergast (217.206.88.---)
Date:   05-06-05 14:04

Hello, i dont have sarcoidosis myself, its my brother. he got diagnosed with the symptom about three years ago and has been on steroids ever since.the problem is that within the last 5 weeks hes been in hospital twice. the other day my sister managed to get the doctor who is treating my brother with his illness to phone her and lay it all out on the table, what we heard made me and the rest of the family feel very sad, they mentioned that my brothers health was getting worse and said that he would probably have to be hospitalized more and more in the near future and that the situation was a catch 22 senario. the problem i have is that my brother goes and has a lung function test every so often,,he went about two weeks ago and after all the tasts, they said his lung function was good, that he had about 85% of his lungs working, what i find strange is that ,,, when my sister was talking to the doctor she mentioned about his resulfs from his lung function test which the doctor dismised straight away. i really feel my brother really needs to get of the steroids. ive heard about this protocal phase which is in three parts, we live in manchester ,england and was wondering if you knew of any doctor who could help us so that we can get intouch with doctors over here that could start my brother or steer him in the right direction,,,i dont really have much faith in doctors as i know ,we all can be wrong .please help. how can we just watch and see another human being suffer,,,not just my brother but all and every one who suffer with this illness, and their familys. i wish that all doctors would work together on these illnesses all over the world...i wish they would get rid of their pride and say,, my god, lets be humane and put all our differences aside and lets really help these people. it does not cost anything what so ever to be humane so lets go for it,,,, im sorry about going on so much,,,,i guess we all do when we feel so helpless.

 
 Re: Darrian Chapman, NBC Newsperson dies of sarcoidosis
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   05-06-05 18:15

Paul,

Welcome to SarcInfo.com. I am sorry your brother is so ill, but perhaps you can help him. We hope you find the information here and on our sister site, www.marshallprotocol.com Read all the tutorials at the top of the page, as well as the reference material at the bottom of the page.

You will can see why physicians can sound so pessimistic when their patients have persistant sarcoidosis symptoms and continue to decline. It's because the "current standard treatments" are not reliable and are usually only palliative measures meant to help the patient feel better, rather than treating the root cause of the disease.

We hope your brother will be interested in learning more about his disease and treatment options. The new low-dose pulsed antibiotic treatment, combined with strict control of the hormones Angiotensin II and the (vitamin) D Hormone, 1,25-Dihydroxyvitamin D is what we favor here. You should understand this treatment does require some patient education and dedication. A person who undertakes the treatment will need to avoid ingested vitamin D, protect their eyes from lights, avoid sunlight and bright lights and understand and manage the Herxheimer reaction to the antibiotics that help kill bacteria. Here is the All-in-one introduction link.

Unfortunately, we do not have a professional contact in Manchester now. Perhaps you will find some help by reading UK patients and this thread. Maybe one of our members from the UK will respond.

Best of luck,

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

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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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