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 The material here provides useful background, but most of this site is now out-of-date.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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 Need a new Doc - what's the best way to change?
Author: Karen (---.brsr6.xdsl.nauticom.net)
Date:   10-22-02 13:42

Trevor,
My pulmonologist dismissed any "D" discussion. He said that these studies aren't new-mentioned some from forty years ago-and he recommended the same websites (National Jewish, American Lung Association) that I visited years ago (sarcoidosis of unknown etiology, etc....) He didn't even want to look at this site or view your papers. Hence, I do not have any faith left in his treatment (only Pred and periodic PFT's and chest films). I plan to speak to my Internist and tell her that I want a new pulmonolgist.

But first, I need to know the best approach to my Internist. Which of your papers should I copy and give to her to read? Should I send them to her with a letter first? I don't want to give them to her during an office visit and have her dismiss them because of time constraints.

I really like my Internist and I hope that she will be receptive to "D" testing and Minocin. I don't want to blow this chance with the wrong approach. I am now a little gun shy since my pulmonologist was so unreceptive.

I appreciate your direction.

Thank you,

Karen
 
 Re: Doctor approach
Author: Caroline (---.win.org)
Date:   10-22-02 14:23

Hi Karen,
I am in the same boat and it seems we have a lot of company......my pulmonary just dismissed me also. A while back when the manuscript was not as complete as it is today, I gave it to my pulmo. She got huffy and told me that it was probably spontaneous remissions I don't think she read but a sentence or two.

On my latest visit I took the current complete manuscript along with quite a few of the PubMed supporting documentation pages. I thought that might make a difference. I again asked her to read it. It was obvious by her demeanor that she would most likely 'round file' it after I left.

Try to follow the 'sun' avoidance advice to a T. We are the ones stuck in this sick body, not the docs. It seems as soon as it's clear the information was found on the internet, it's worthless--amazing!

Trevor mentions that it will take years; I think the power of the internet will shave that time. Hang in there! It's sure frustrating and maddening to constantly have to row against the current......Good luck with your internist!

Caroline
 
 Re: Need a new Doc - whats the best way to change?
Author: pages2 (---.kc.rr.com)
Date:   10-22-02 20:23

Karen,
One of the first things that the Pulmonologist said to me was "aren’t you glad you have sarcoidosis". Was this a test to see if I was open for his next comment? His next comment told me that I needed to have a biopsy to check and see if it is cancer. Strike 1 and 2 on the first visit. The next visit was strike three.

Then National Jewish Hospital was a next try, which worked somewhat and solved several problems but was so fast that it is difficult to remember the answers to 14 intense questions. They did say that we should be followed each and every year.

We all want a doctor to listen and then respond. We want the doctor to be open and one who will research. When we do research of our own disease this should be looked at as helpful. To be a doctor this day and age with the Internet may be a challenge - it is the doctors job to educate the patient. When the patient chooses to educate themselves this puts the doctor who is not up on the current information in a position to learn, or choose to say "next".

My very first doctor told me to stay off of the Internet. She did not want me to go nuts on her yet. She also said that the sun was ok. Even back then for some reason I asked about the sun. So many times we have to go back and re-learn when we get answers like that.

I was taught that the latest most current information is on the Internet. When you rely on books for the information the information may be 5 years or more if the book was just published.

My Rheumatologist follows all of my Sarcoidosis at this time.
We are sick and it is so hard to juggle all of this.
Wishing the Best Always,

Pages2
 
 Re: Need a new Doc - whats the best way to change?
Author: Denise Testa (---.connect.com.au)
Date:   10-23-02 06:17

I am very lucky indeed that I have always had an understanding and supportive GP who works in a University Medical centre. She has written me referals for every new specialist I have found. I went through an immunologist, and a rheumatologist before I found my current one from a web forum like this - which put me onto a fellow sarcoidian in my own country, who kindly gave me the whereabouts of her specialist. It was then a matter of going back to the GP saying I found this doctor, "can you write a referral?"

If you are not comfortable with the care try and find someone else. The reason these doctors tell you not to look at the literature,internet etc is the fact they they have power and they really have damn all.

I was lucky, coming from a para-medical background and being able to interpret tests. Both my GPs realised this and were straight with me (and even sometimes asked my advice about what test to do next.) That attitude naturally went out the window with specialists. In fact, what they said to me to my face, and what they wrote in the letters back to the GP often did not correlate. The specialists attitude is that they are sparing you stress by telling you all is hunky dory. When you find out they are telling you white lies, you not only lose respect, but trust. I bloody well knew there was something wrong with me and I sat down and went through all the possible auto-immune diseases in a medical book periodically, because the medical profession were not coming up with the answers. All I got from them was that there is something wrong but we don't know what it is. My attitude was the sooner we know what the hell it is the sooner I can get treated for it and begin to live again.

When I developed two other tell tale symptoms of sarcoid I went back to the doctor. He didn't know what to make of it - so I went back the to books and the internet and with the new symptoms I found sarcoid fitted the pattern better than any others. I went back and told the doc I thought I had sarcoid. He said "what do we do?" and I told him, x-ray or ACE. He said lets do the x-ray but I was still shocked when it showed the lymphadenopathy. So in some ways I was very lucky I had understanding doctors who were not threatened by my medical knowledge. My lady GP told me nearly all the university students she gets in go on to look up their conditions on the net, or in the medical library and that doctors just have to get used to it. Law is the same people are better informed than they used to be.
It is in our best interests to keep up to date on the condition. The anecdotal evidence that keeping out of the sun lessens inflammation is true for all inflammatory conditions, not only sarcoid. You don't need a prescription to do this - that is the best thing. Drs are human beings with the same fallability as us, not gods. What they formulate from a set of tests and symptoms is a diagnosis which is an opinion. That opinion is only as good as their observation, notetaking, the patient's description, and the test procedures, which are themselves subject to human error.

The best advice is, if you are not sure, or comfortable, go somewhere else. Sometimes doctors dismiss you as having nothing wrong with you. This is an oportunity to go somewhere else. One of our country's top immunologists told me I had cluster headaches two weeks before I had the tell tale x-ray. I cancelled my next appointment immediately. I realise now what I had was the migraine Trevor described. There is no history of migraine in my family. Give em the flick and go somewhere else. The lady who kindly gave me her specialist's name saw 22 doctors before they diagnosed her with neurosarc. We really owe it to ourselves to get the treatment we are most comfortable with.
 
 Re: Doctor approach
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   10-23-02 08:34

Karen,

I will try to answer your question because I went through a similar situation. I set up some time to talk to my primary doctor. You know your doctor best, so it is your call as to whether to write them a letter and include the scientific papers or to discuss it in a one-on-one consultation. I chose a consultation, but I didn't expect my doctor to do anything except talk with me on that visit.

I went back to my primary doctor and briefly explained my experience with my pulmonologist. I took my husband with me and explained that we were in agreement on what I needed. My plea was simple, "I do well understand I need medical care, and I believe my expectation is reasonable: I would like for medical professionals to handle my case in view of the latest scientific research about this disease. I realize that is not a simple task, but it seems that managing a case of sarcoidosis such as mine is not simple, anyway." I reminded my doctor how living with sarcoidosis had changed my life... lest his mind somehow wander to those simple textbook explanations (many patients have no symptoms, etc. etc.).

I said I needed a doctor whom I could trust, who would listen to my symptoms, and not be too intimidated to look at new information and possibilites. I gave him a copy of the abstract of the Swedish study that found rickettsia in sarcoid granulomas. I said I understood how doctors might not yet know about this research, because it was only published this year. I explained that if there is an infectious trigger or component to sarcoidosis, then the "standard" prednisone therapy did not make sense to me. I also gave my doctor this summary about using tetracyclines for the treatment of sarcoidosis and this about acne bacteria found in PCR studies of sarcoid lymph nodes.

I said that I didn't think there are many diseases that are still treated today as they were years ago, and talked with my doctor about the changes regarding treatment of ulcers after the discovery only a few years ago that ulcers were caused by Helicobacter pylori. That revelation was controversial in the beginning.

I told my doctor that it is well documented that sarcoidosis patients have abnormal vitamin D metabolism, and I gave him this summary documenting dysregulated vitamin D in sarcoid more than 20 years ago. I had read the symptoms of vitamin D toxicity, and they closely tracked the symptoms I was enduring. It seemed to me that since the 1,25-dihydroxyvitamin D is the most potent and biologically active form of vitamin D, and that's what sarcoid macrophages abnormally produce in an unregulated way, this vitamin D could be causing my symptoms, I said. I didn't want to end up like this patient, so I hoped he would order some some lab work on my blood levels of vitamin D to see if that is my problem.

I was also interested in trying the minocycline therapy because it seemed promising - with little risk. I asked my doctor whether he throught this might offer some relief for me. I told him that if he had any questions, I would like to explore those with him. If he wanted more information, I offered to ferret it out for him. One thing I knew for sure, I was not going to take prednisone. I was determined to "tough it out" and take my chances with sarcoidosis before I would take my chances with prednisone, but it seemed that investigating antibiotic therapy and the role of vitamin D in my symptoms was a better option.

If my doctor was willing to continue with me, I told him, I wanted to schedule another appointment, after a few weeks of living as "normal people" do (unafraid of sun exposure). If I noticed increasing symptoms, I proposed that he order blood analysis of my vitamin D and ACE levels, and seriously consider minocycline. That allowed him time to read all the information and me time to track down the full text of the article on using tetracyclines in the treatment of sarcoidosis. The tables and figures for that text are now available online.

Too bad sarcoidosis is only fully appreciated by the people suffering with it. My experience has been that sarcoidosis is difficult to diagnose, and the symptoms are complicated for others to comprehend. Our treatment will change only as we raise our expectations of our medical providers. Medical providers will change only if patients speak up - or vote with their pocketbook and feet. You are absolutely right to find someone else to help you, Karen. There are good doctors who care, and those who don't care... don't deserve our business. We are all hoping you find one of the good ones.

Now that I have my good doctor, I treat him with the respect and consideration he deserves. This relationship is a partnership for my health, and I want it to last.

Belinda

PS I think you may have to have alternate plans in mind. If your doctor doesn't know pulmonary specialists who practice as you have described, have in mind another specialty to suggest, such as endocrinology, infectious disease, etc.

 
 Re: Need a new Doc - what's the best way to change?
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   10-23-02 17:43

Dear Karen:
I sure don't have any answers but one thing I have learned with having this disease. You have to be persistent and insistent in dealing with the doctors. It has taken me over two years to get through with certain information and theories to my internist. She is very kind, nice, and knowledgeable and also like most good doctors, very busy.
I have refused to take no for an answer. I wait, and ask her again, and again and again. Sometimes you can wear them down. Should it be this way? No.
Good luck to you.
Caroline McGuirl
 
 Re: Need a new Doc - what's the best way to change?
Author: Mary S. (---.114.240.168.fdl.wi.charter.com)
Date:   10-23-02 22:30

Well I had my visit with a new rheumatologist last Thursday First they couldn't find my files. Just from the last 5 years they are 2 inches thick. I mentioned that I see another doctor in the clinic and after 10-15 minutes they finally located them All my latest bloodwork was missing and he ran no new tests and pronounced me in remission. I dismissed his findings and said I am still symptomatic. He only... looked at the papers for about 2 minutes. Com'on....I mentioned the newer research and once again...the blank stare. I live 5-6 hrs, from Mayo Clinic in MN and our insurance will cover it. I feel safer in going there because I know people who have gone there and said they have some excellent doctors there...than all this running around. I almost gave him the power to make me cry but I talked to a few people and feel better now. I have started to sleep a little better since working on the D connection, but the meds would really help. On to the next battle....Mary S.
 
 Re: Need a new Doc - what's the best way to change?
Author: Denise Testa (---.connect.com.au)
Date:   10-24-02 04:59

I went to a pulmonary specialist for two years. They are very dismissive of all organs appart from the lungs - to be sure. He offered me no treatment. He insisted that I was female, between 20 and 40, presenting with erythema nodosum (so untypical that an Indian doctor with med students in tow dismissed me for that precisely that reason.) The pulmonologist told me because of these three factors, my sarc would be gone within two years. That is how far behind the times he was. My sarc was not gone within two years but when he said I need not bother seeing him again because two years was up and I was cured, I happily departed and found a doctor who didn't see me as a giant set of lungs without other appendages. I have been in remission for months.
The doctor I am currently unders believes that when you get a virus the sarcoid reactivates. I recently got a virus from my niece. I have been getting aches and pains in the hands, feet and hips that I haven't had for an age. What is more I have an extremely sore left ear, it is very painful to swallow and lymph glands are up in my neck and lymph vessels can be seen in my throat.

Is this true, as I suspect - a viral illness can re-activate the disease??
Den

Denise
 
 Re: Need a new Doc - what's the best way to change?
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-24-02 09:49

Denise,
Sarcoid inflammation is formed in a genetically pre-disposed individual in response to a challenge from a variety of allergens, bacteria and viruses. The body generates CD4 T-lymphocytes in a Th1 type immune reaction. But most of this inflammation disappears over time. What is peculiar about Sarcoidosis is that some inflammation does not go away, in fact it spreads. This is the inflammation that results from bacteria which have learnt to live within, and sustain, the inflammatory granuloma.

..Trevor..
 
 Re: Need a new Doc - what's the best way to change?
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   10-24-02 13:23

Dear Trevor:
It then could be possible for a person to have Sarcoidosis and have it in remission (whatever it might be called) and then something else comes along...virus, bacteria whatever and it "renews" itself????
My internist asked me if I had ever had swollen glands before. I did have Mumps when I was a child, also a case of "surgical mumps" after a gallbladder was removed. Later I had a case of Herpes Zoster (Shingles) and then followed by a rash on and off.
Could all this be a picture of Sarcoidosis?
Caroline McGuirl
 
 Re: Need a new Doc - what's the best way to change?
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-24-02 13:48

I had an e-coli infection in 1991, associated with a kidney stone, while I was on my last course of prednisone. The infection was identified by the lab, and found to be susceptible to Septra (Bactrim).

I used Bactrim occasionally during the 90's. I found it was amazing how I could develop symptoms of what felt like stomach flu, and a single Bactrim would make me feel better within hours and make the 'flu' go away the same day.

But the sarcoid inflammation continued to spread. Bactrim did not kill the cell-dwelling microbes. Only when I used Minocycline did the sarc go into remission. Incredibly fast at first (within 5 days I could move freely out-of-doors) and then gradually lowering my 1,25-D (and presumably the systemic inflammation) over a period of 3 months or so. Some dental inflammation in a root canal that had been a severe problem since the 70's went away at about day 45.

Any allergen/bactrei/virus can cause your immune system to generate inflammation. Only the cell-dwelling bacteria have the power to keep those granuloma alive and non-caseating ('healthy').

..Trevor..
 
 Re: Need a new Doc - what's the best way to change?
Author: Mary S. (---.114.240.168.fdl.wi.charter.com)
Date:   12-04-02 22:36

I am having my 'fifth doctor' appointment on December 17th. The third rheumatologist I have seen wouldn't even consider antibiotics. This next one is a new internist who used to be an opthamologist(sp). I thought that sounded like an interesting combo because the best sarc advice I've had so far was from my old eye doctor(...he moved). Any advice...besides of course your research paper and the John Hopkins report......? mary S.
 
 Re: Need a new Doc - what's the best way to change?
Author: Kathleen (65.121.96.---)
Date:   12-07-02 16:22

Hello all -

I'm in kinda late on this discussion, but I wanted to say that after seeing specialists of all kinds, all over the place, my GP is my total care doc. He is open-minded, and uses his instinct and judgement. While he may laugh at me and some of the things I come up with, he ENCOURAGES me to look on the internet, and find any new information I can find. I know that he can't possibly spend all the time necessary to research sarcoidosis, as I am not his only patient!! I find what I can, and pass it along - he also researches on his own - and if he is not knowledgable about something one visit, he is by the next visit!

Anyway, many other physicians I have dealt with either have no interest in answering my questions, or do not want to entertain the possibility of other situations; or are offended if you give them new information.

I trust my physician implicity! It's a nice feeling, and I am certainly grateful - this illness is scary enough without having to fight your doctors!

Kathy from Wyoming
 
 Re: Need a new Doc - what's the best way to change?
Author: Admin (---.vnnyca.adelphia.net)
Date:   12-08-02 07:14

Kathleen,
I always recommend just one good primary doctor to keep an eye on your overall health, to give advice, and to prescribe medications. I personally believe that a sarc patient should solicit their local Internal Medicine specialists to find one who is prepared to serve as primary caregiver. Then you have the best of both worlds. Now if you can additionally find one with both a PhD and an MD...

..Trevor..
 
 Re: Need a new Doc - what's the best way to change?
Author: Kathleen (65.121.96.---)
Date:   12-08-02 15:46

Trevor -

Actually, I'm not too far away from that - I live in a small town, and I work with all the physicians at the hospital. Should I need something more advanced, such as cardiac tests, the internists are willing to -and have - helped out...

I also work w/the ER docs, and they all know me (medically quite well, actually!) which is very comforting! I feel like Dorothy - after spending the last few years constantly going to other cities, THERE IS NO PLACE LIKE HOME! And with thanks to you, now there is no need to go anywhere else!
(And my father, who also had sarcoidosis, is a pharmacist - so I'm not lacking for much!)


Kathy in Wyoming
 
 Re: Need a new Doc - what's the best way to change?
Author: Caroline (---.win.org)
Date:   12-21-02 10:54

Hi Everyone,

I have gone full circle with different doctors. I am now back to my internist. I have been with him a number of years and he is a very kind and caring doctor.

When I was first diagnosed by a pulmonary doc, I followed up with that pulmonary and I continued with the neuro I already had. ( I had neurological symptoms before pulmonary). Then that neuro decided I was a difficult case and referred me to a university hospital neurologist. From there I found a sarc 'expert' (pulmonary) online and went there. What I found echos some other sentiments, the specialists do not treat you as a whole person, they are also not interested in any treatments outside the box.

I spoke first by phone to my internist. I then wrote a letter with the documents and related abstracts that were important to me. My office visit was about a week later. He prescribed minocycline. He will also prescribe ARB's at my 4 week follow up appt. if I have any improvement in between. I so am hoping the antibiotic helps in these weeks.

He is the first doctor who has expressed any interest in this theory and took the time to read the information. I should have went to him when I first knew of this but hindsight is 20/20. I have not been helped even the smallest amount before so I am praying this time is the charm.

I ordered my sunglasses from Noir for both inside and out. I have also gone to a very strict diet, mostly protein (I need to lose some weight too). I just wanted to pass this on. I am very hopeful right now.

Enjoy the holidays! Caroline
 
 Re: Need a new Doc - what's the best way to change?
Author: Meg (---.188.243.46.euc.wi.charter.com)
Date:   12-21-02 14:25

Hi Caroline,

Your experiences echo mine. I am working with my internist now who knows me and if nothing else will order the meds to humor me much as she did with HRT. I'm hoping though that she will take the time to read the info even though she may never see another sarcoidosis patient. Her first response was open-minded unlike the specialists and she did order the blood tests I asked for.

I wanted to encourage you in your dieting efforts. A lowcarb diet helped me lose 60 lbs and I see that Dr. Mercola advocates a diet low in sugars (carbohydrates are sugars) to facilitate the response to antibiotics for RA. I find lowcarb eating the only way for me to control my weight.

I called Noir to order my sunglasses today but they are not open. I noticed that they come in different sizes and am a bit confused by that so I'm eager to talk with them.

I hope that you will have a good response to the Minocin and not too much Herxheimer's.

Good luck to you,

Meg
 
 Other
Author: Frank Johnson (59.95.160.---)
Date:   07-26-05 00:00

good service
 
 Re: Need a new Doc - what's the best way to change?
Author: Lottie (---.proxy.aol.com)
Date:   07-26-05 00:32

Frank,

Welcome to SarcInfo.

This website is set up to assist people with Sarcoidosis. Do you have Sarcoidosis? If you do, I hope that you're reading as much of the patient tutorials as you can.

I will be sending you additional information by email.

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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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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