Sarcoidosis Answers for Sarcoidosis Physicians and Nurses

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 The material here provides useful background, but much of it is now out-of-date.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 1^st 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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Sarcoidosis Mythology

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 04-12-02 21:55

I ran across this article, published more than five years ago, which addresses common myths about sarcoidosis. It says these myths continue to accumulate, despite solid information which could correct the myths.

Fortunately, we have the internet and places such as this forum to get solid information. Just wondered what anyone else thinks about the "myths" listed in the article.

Belinda

Re: Sarcoidosis Mythology

Author: Admin (207.175.253.---)
Date: 04-12-02 22:13

Belinda,
The main 'myth' I take exception to is "Kveim-Siltzbach test is not a reliable diagnostic test for sarcoidosis". In fact the Kveim test is not used anymore, primarily because it is unsafe. It requires the injection of biological material from a sarcoidosis patient into the person being tested.

I think another 'myth' that should have been listed is that sarc is an "auto-immune" disease. We are now finding Bacteria in the 'empty' granuloma, so it almost certainly is not "auto-immune", after all

Yet another 'myth'- that treatment of sarc patients requires systemic suppression of the immune system with prednisone, methotrexate, et al, rather than a symptom by symptom examination of treatment options. These drugs just make it easier for the microbes to prosper, without attack by the immune system.

Finally the worst myth "its all in the mind" - "you can't be feeling that sort of pain" "there is nothing wrong with your memory - all people are forgetful" "get back to work and stop malingering"...

Your thoughts on these? Any more we have missed?

..trevor..

Re: Sarcoidosis Mythology

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 04-13-02 14:14

Trevor,

I agree with the myths you listed! The Kveim-Siltzbach test is not generally available in the USA, which is probably good.

I also agree with the author's myth list which included: Sarcoidosis is mostly a disease of African Americans .... WRONG! People of all ethnic backgrounds have the diagnosis.

Other myths I would add are:

*Sarcoidosis is due to an underactive or "worn out" immune system....
Seems there is plenty of research documenting it is a normal or hyperactive immune system instead.

*Sarcoidosis patients are usually under age 40..... Sometimes it takes years before patients are diagnosed, so many people are past 40 before they are ever diagnosed. In addition, sarcoidosis patients go on living productive lives - well past age 40.

*Another one that troubles me is the comment made by a pulmonologist who told me sarcoidosis ALWAYS affects the LUNGS.... I don't know. What about the patients with neurosarcoidosis and no evidence of lung dysfunction?

And finally -- the idea that we have "allergies," need a cough drop, or need to find someone who can "fix" sarcoidosis, because they can treat even cancer nowdays!

Have we covered them all?

Belinda

Re: Sarcoidosis Mythology

Author: Ken (---.proxy.aol.com)
Date: 04-14-02 18:26

Now that we as a group are acknowledging the existence of more than one source of sarc or sarcoid-like disease, let's review the value or lack of the "Kveim-Siltzbach Test". This test consists of making a serum from a "known sarc patient" and doing a skin reactive test on another patient suspected of sarc. Today we certainly would consider health concerns, but when this test was discontinued that was not the issue. This test was discontinued because there were too many false "negatives". People with sarc were testing "negative". Could this mean that a "positive" reaction will occur only when the serum and the test object have had the same source exposure? Could not this mean that as individual sources are identified that a series of safe skin reactive tests could be performed to identify new patient diagnosis?

Re: Sarcoidosis Mythology

Author: Admin (207.175.253.---)
Date: 04-14-02 18:54

Ken,
In 1978 I was advised not to have a Kveim test because it was considered unsafe. I had a biopsy instead. Actually two biopsies, 'cos the first one didn't work. But that was in Australia, and the situation in the USA might have been a little different.

I think we will find a number of genetic factors, and subtle differences in the subset of genetic factors which an individual has accumulated will determine the outcome from any immune challenge. But this is purely a guess at this point, we don't have the genetic data in from the ACCESS study yet.

The biggest problem with allergy sensitivity testing (OK, I lied the other day when I said I knew nothing about it) was that the only 'pin prick' subdural skin test which ever showed an outstandingly abnormal response on my fore-arm, was for 'strep' (streptococcal bacteria). I had a huge 1 inch diameter welt on my arm, and had to come back into Outpatients to have it treated. My prescription book shows an entry from 7/27/78 for Betnovate cream (a topical steroid), which was prescribed to reduce the swelling at the test site.

Problem was, nobody knew what the significance of that positive was. I asked doctor after doctor. This reaction was so unusual they just didn't know what to make of it. Now of course, in hindsight, I can take an intelligent guess that we could have lept 2 decades of sarcoid suffering had we known that a bacterial sensitivity might have caused the sarc inflammation. And that antibiotics could cure it

(If I don't laugh I will cry...)

OK, so 'strep' caused an anomalous pin-prick reaction. But the other 2 or 3 years of testing for dozens of standard allergens produced nothing concrete.

Now it is quite another question to ask whether there was a drop in my PFTs due to the hostile bacteria being syringed into my arm. Unfortunately I had my Thoracotomy aout this time, and the drop in my PFTs late in 1978 was always attributed (probably correctly) to the hunk of lung tissue which was removed during the biopsy

..Trevor..

Re: Sarcoidosis Mythology

Author: Admin (207.175.253.---)
Date: 04-15-02 08:20

The Tuberculin bacteria is so dangerous because it fools the body's immune system into thinking it is not harmful until after it infects the cells. The T-lymphocytes do recognize it and activate to fight it, but with difficulty.

IMO, the biggest danger with skin sensitivity tests is that the sarc patient's body might form granuloma around the foreign DNA in the test material so aggressively that it could affect the health of the patient.

On the other hand, a simple skin test that could be used to screen for sarc would definitely be rather useful... At the moment the D-Metabolite blood tests are the best we have available. Luckily, they are pretty good, and everybody should get them done (instructions here)

..Trevor..

Re: Sarcoidosis Mythology

Author: Robert Keeler (164.58.165.---)
Date: 12-23-02 14:02

Dear Belinda,

What mythology? How can I find out the truth about this terrible disease? Please advise.

Re: Sarcoidosis Mythology

Author: Admin (---.vnnyca.adelphia.net)
Date: 12-23-02 14:50

Robert,

The truth? Three things:

1. Sarcoidosis is not a 'terrible' disease. It is a bacterial disease (click here for info). A number of different bacteria, including the Mycobacteria, have now been found in sarcoid tissue (you can click the bold text to get more infomation about the item in that bold text).

2. Armed with the knowledge that is now available, much of which has now been concentrated onto this message system, patients are CONQUERING sarcoidosis.

3. If you do not have the medical expertise to understand what is written here, please email one of the nurses or professionals you will find on SarcInfo, and I am sure they will be happy to help you work through it.

..Trevor..

Re: Sarcoidosis Mythology

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 12-23-02 17:38

Robert,

A lot of sarcoidosis patients have been reading the medical research information posted on sarcinfo.com and coming to a better understanding of sarcoidosis, what makes our symptoms flare, how to control them and antibiotics and other prescription medications that may help.

Many of us felt we were in terrible shape when we found this board, before we knew to do simple things like avoiding sunlight and vitamin D foods and supplements.

Plan to take some time to read and research the information posted on this forum. The information is here because sarcoidosis patients took the time to dig it out of medical journals and offer it to you online. Anything in bold text usually has an embedded link that will take you to further information. If you have been diagnosed with sarcoidosis, I suggest you keep an open mind and evaluate your own experiences and see if the information here makes sense to you. If you still have trouble understanding anything after consulting a medical dictionary, you can post a question on the board or send an e-mail for more information.

I lived with the symptoms of sarcoidosis for a long time before I was diagnosed, and I have some strong opinions about what are the 'terrible' things related to sarcoidosis. In my opinion, what is terrible is:
* when doctors who do not understand sarcoidosis don't research the facts so they can advise their patients (because some of this information has been documented for twenty years),
* when doctors scare patients about the prognosis of their disease,
* when patients endure prolonged treatment with drugs having debilitating side effects and little beneficial effect on the outcome of sarcoidosis
* when patients lose hope of understanding and conquering sarcoidosis with the help of medical professionals.

Take care,
Belinda

Re: Sarcoidosis Mythology

Author: Kathleen (65.121.96.---)
Date: 12-25-02 15:54

Happy Holidays to All!

I think another myth is that you have to have a positive biopsy - either that or the fact that sarcoidosis is a diagnosis of exclusion. My symptoms of inflammation have been clear - yet it "isn't enough". I (and others I know) have also been told that since I do not "fit into a clear catagory", it would be difficult to help me. It seems to be the "mystery disease" that no one - even the specialists - really want to deal with!

I have been medically cleared by multiple cardiologists - one even prescribed a personal trainer because I am "fat and out of shape". (Although they do prescribe cardiac meds for a condition they will not admit exists.) They will not accept sarcoidosis as the cause of my symptoms, even though I have a family history, etc. I am still waiting for my Vit D lab tests - although my ACE, CRP and triglycerides have been elevated for some time.

Although they will not treat me for sarcoidosis without a positive biopsy (and my bronchoscopy was negative for sarcoidosis - although contained much inflammation), and they do not recommend a cardiac biopsy (although they knew my history when I had an angiogram - and it would have been an easy matter to take a few samples while they were in there...) - I guess that means I don't have sarcoidosis, in their opinion.

Yes, the myth that if it isn't pulmonary, and that cardiac/neuro sarcoidosis is very rare - therefore I can't have it - is alive and well!!! Even discounting cardiac and neuro - I have many systemic symptoms - but not pulmonary (except, of course, shortness of breath), so....

I think the myth of pallitive/comfort care is alive and well also - I was told that I would be given narcotics to help my pain (I am allergic, so I can't take anything) - but that is the only treatment my last sarcoidosis specialists recommended.

And finally, the myth of depression lives on - I have been told by many doctors and specialists that I am depressed - OF COURSE I AM DEPRESSED - I was sick, with no options!!! However, the depression came after the illness...something they conveniently ignore or choose to not believe.

I hate to add this, I don't want to stir anything up, but I truly believe that had I been a male, my cardiac symptoms would have been taken more seriously...the myth of women being less likely to have cardiac difficulties fits in nicely with the "rarity" of cardiac sarcoidosis.

Kathy...

Re: Sarcoidosis Mythology

Author: Admin (---.vnnyca.adelphia.net)
Date: 12-25-02 16:16

Kathy,
But look at it from the other perspective - even bigger changes are coming for those doctors who need to play everything so closely 'by the book'.

You see, all macrophage-based inflammatory processes seem to be related to 1,25-D. The biochemistry determines that, not the symptoms. As much as a physician may want to put a patient in this "box" or that "box", as we learn more about the way our bodies really work, it just isn't that simple any more.

For example, I have known that 1,25-D is high in the synovial fluid of R.A. patients since I came across a Japanese study some months ago, but, just recently, Belinda passed me a study that shows 25-D is low in Osteo-arthritis as well.

Now this study's authors figured that low 25-D means "supplement the patients" while I figure that a low 25-D could mean "their D-Ratio is high - they might have 1,25-D mediated inflammation".

My interpretation would mean a heck of a lot (may 5-10% of the population) would have better bone and disease status without D being added to the food chain. That's without even talking about sunlight

The pulmonologists will only have to cope with slow-growing bacteria being found as the cause of many of the pulmonary diseases (incl. sarc) but the GP of the future may well have a heck of a lot of basic re-thinking coming his/her way

..Trevor..

Re: Sarcoidosis Mythology

Author: Dale (---.misn.com)
Date: 12-25-02 19:29

Hello, My name is Dale. I am a 47 yr old male from Mo. I don't know much about the myths of sarcoid or much about the disease at all..My Dr. has recommended me to go on disability, by the time I brush my teeth and get my shower I am so tired and worn out that I have got to set and rest for a while before I can go on..My lung capacity is really bad...Anyone else like this?

Re: Sarcoidosis Mythology

Author: Caroline (---.win.org)
Date: 12-25-02 22:44

Hi Dale,
My lungs aren't as bad as yours, I am mainly troubled with neuro symptoms. Our summer humidity is completely exausting. I am in MO northwest of St. Louis. Hope you had a happy holiday!
Hang in there,
Caroline

Re: Sarcoidosis Mythology

Author: Denise Testa (---.connect.com.au)
Date: 12-25-02 23:12

I will never understand doctors ignoring symptomology and family history.
I have heard of many misdiagnoses recently. A lot were friends and some friends of friends, or people I have read about on the WWW.

One of the most flagrant and distressing set of circumstances concerns a relative of mine in Britain. I knew he died aged forty, but it has been only recently that I rec'd the finer detail in a Christmas letter sent to my aunt.

If ever there is a message about the medical system and the trusting there of, then I hope this story serves as a warning. One myth to be busted is that medicos are 'always right'. My mother, a nurse, always told us, doctors don't make mistakes, they bury them.

This tragedy relates to my cousin's husband of 14 years. He was in the British Navy and the local constabulary at the time of his death. His father died in his forties of a heart attack. The two brothers of this man have also had heart attacks and survived them all while relatively young. If ever there was a cardiac history running in a family it was this one.
This man experienced severe back and chest pain over a twenty four hour period. He was admitted to hospital, given pain killing drugs and released.
He continued getting pain and again went to hospital being released when doctors deemed his ECG normal. The doctors in question made a mistake, the ECG wasn't normal at all, but believing it was, Derek went off to work as usual in the morning, only to fall victim to chest pains again. He was let off work sick, and came through the front door at lunch time, where he collapsed in front of his wife and twin twelve year old daughters. His wife rang for an ambulance, but the heart attack was so massive he was never revived. His wife is a widow at 36.

So, if you believe something is wrong and a doctor tells you otherwise. Go somewhere else if it is possible.

Denise

Re: Sarcoidosis Mythology

Author: Admin (---.vnnyca.adelphia.net)
Date: 12-26-02 02:50

Denise,
I personally 'buried' a patient during my PhD studies.
I came to check up on him one morning and the bed was empty.

The environment at a hospital is structured so that you don't think much about it at the time, you just keep busy. The whole system is structured towards keeping patients moving through the system. And towards keeping the system viable.

But I was reading a story this morning which shows our current health system really is not viable. The practice of medicine seems to have become a huge marketing campaign driven by the drug companys' need to sell more and more new (and profitable) drugs to the public. Take a look at this article.

Resistance to change is institutionalized in medicine. In some twisted way, unless a Drug company is supplying information to a doctor, the information is not to be trusted. The fox is in charge of the chicken pen.

..Trevor..

Re: Sarcoidosis Mythology

Author: Macy to Kathy (---.houston.rr.com)
Date: 01-12-03 11:28

Hi Kathy, I have to agree 100% with you in reference to Cardiologists and heart disease in women. YES, if I were a man of any adult age, I would of been seen ASAP and diagnosed, etc. etc.

Oprah said recently that women need to be more assertive. Also the female cardiologists that she had on her show stated the same.

You mentioned Sarcoid Cardiac relation. I am wondering if the Angina Type pains (that I had to beg for Nitro) is all Sarcoid related. I had to beg for a Cardiolite Test which they said was normal but there is something called "Cardiac Syndrone X" They list this disorder on some sites as a metobolic disorder. I have also see the words, Vasospatic and Microvascular Angina. They say people (mostly women) have normal angiograms but the problem seems to be in the tiny little vessels in the heart muscle? Possibly inflammation or hormone imbalance, etc. etc. etc.

When the heart pains come now, I take the lil Nitro and place under the tongue and the pains go away. I hate the side effects though, of the Nitro.

Now, Sarcoid is inflammation of various parts of the body. Chest pain if cardiac related and also Espohageal Pain can stem from inflammtion. (itis)

I also have the GERD/REFLUX. I am a real mess.

Re: Sarcoidosis Mythology

Author: Robert Rodman (---.proxy.aol.com)
Date: 06-21-03 12:13

I was recovering from sarcoid (CT-scan showed regression of lung nodules) when I developed atrial fibrillation and mitral regurgitation. Is it conceivable that these conditions are manifestations of cardiac sarcoid? Is it likely? No previous such symptoms.

Re: Sarcoidosis Mythology

Author: Kathleen Stuart (65.121.96.---)
Date: 06-22-03 18:11

Robert,

I have been constantly told that I do not have cardiac sarcoidosis because it "isn't likely"...despite my symptoms. However, my heart tests are essentially fine - and my heart is essentially fine - but SOMETHING makes it do weird things - I have tachycardia (from a resting heart rate of 52 to a resting rate of 130); blood pressure from 110/60 to 173/115; atrial enlargement and signs of pulmonary hypertension. Previously, I had been incredibly healthy, and I remembered the other day that at one time, as a swimmer, I could swim 50 yards underwater (2 laps).

Basically, anything that inflammation can affect can be sarcoidosis. My father and sister both had pulmonary sarcoidosis; my PFT's have always been okay. I am not a biopsy proven case; mine is presumptive - based on my family history and my symptoms. However, once I found this site, I absolutely fit the profile - of inflammation and bacteria. I am responding to the Minocin and Benicar. All of this, according to specialists, is not sarcoidosis - but, ah, it is.

In fact, I think sarcoidosis is sufficient as a name - although it can affect us all differently, such as pulmonary, neurologically, cardiac, etc., the basis for the disease is the same. So yes, I think any symptoms may be attributed to the inflammation of sarcoidosis. I am currently taking a beta-blocker to help slow my heart rate in addition to the Minocin and Benicar - and the combination is excellent! You may need additional medication to get everything under control, but you CAN get it all under control.

Best of luck, Kathleen in Wyoming

Re: Sarcoidosis Mythology

Author: Lori (---.fibernet.dialup.citynet.net)
Date: 07-12-03 13:19

Hi I am a WV resident,
I have not been 100% diagnosed with having sarcoidosis,but 2 doctors
have said everything is pointing more in that direction. My ACE is 64, but
I do not know what my 1.25 D is or my Vitamin D? I take a water pill, singulair and protonix everyday. I get short of breath going up grade,
mostly. On a high resolution CT scan it showed a small bleb on my lower
left lung. I know this is a part of my lung that is gone, but my question is
does this contribute to sarcoidosis? My doctor says, "It could be emphysema or I could have been born with it." He keeps saying that I am ok but wants me to come back in 4 months. I also am beginning to develop a knot on my left four finger, which I think is arthiritis. Does anyone else have a bleb on their lung?

Thanks, Lori

Re: Sarcoidosis Mythology

Author: Admin (---.vnnyca.adelphia.net)
Date: 07-12-03 18:57

Lori,
The online medical dictionary describes a bleb as a cellular (very, very, small) artifact. It would not be seen on a CT scan.

Sometimes it is used to describe an air-filled void. I am lost to figure the prognostic significance of such a void in a Sarc patient. An easy trap to fall into is to focus on physical things that you can see and sense, rather than focus on the microscopic level where the damage is actually being done.

So I wonder which your Doc was talking bout? A Bleb? A Bulla? A Cyst?Maybe if you ask his Nurse for a copy of the actual CT report it might let you know. You could always phone and ask Doc exactly what he means, of course.

4 months is a long time to let sarcoidosis go unchecked in a symptomatic patient, IMO. You are doing the correct thing by looking around the Internet for more informationn.

..Trevor..

Re: Sarcoidosis Mythology

Author: Meg (---.188.232.59.euc.wi.charter.com)
Date: 07-12-03 22:59

Lori,

To get a copy of any of your medical records, call the release of information department at your clinic or hospital where the test was run. Ask what their procedure is. They will require that you sign a release of information form which is usually good for one year. The documents you request can be sent to you or picked up in person by presenting proper ID. It has always been your right to obtain copies of your medical information. Most departments give up to 10 pages free of charge and then ask for a reasonable fee for anything more than that. The new HIPAA regulations guarantee access to your medical records and you can request that they change anything you consider inaccurate. They may ask why you want the record and you can be honest and say it's for personal use. That is a legitimate reason to get them.

I obtain a copy of all my records; clinic notes, lab reports, etc. immediately after they are done. It is an excellent way to be sure that you understood what the doctor said during the visit and to keep your own records of test results. More than once, I have been surprised by something I read in a report and it has enhanced my medical care by allowing me to correct or clarify any misinformation.

Meg

Re: Sarcoidosis Mythology

Author: Kay Pullen (---.geetel.net)
Date: 07-13-03 15:08

Hello Everyone,

In reading the mythology, I was particularly interested when some of you are being told it can't affect the heart---WRONG!!! My sarc symptoms started in 92 with eye problems but I wasn't diagnosed til 96 with lung biopsy. I'd attributed my SOB to obesity, so I'd probably had both eye & lung involvement for some time. I wasn't responding to prednisone and getting sicker and sicker, so changed to Dr. Wilkes(pulmonary/sarc specialist) at IU Med Center in 97. He was first to run EKG, which showed past silent heart attack. Further testing(echo, then thallium scan) indicated probable heart involvement, but I passed when the heart doc said "only positive heart test for sarc is autopsy."

I started several heart meds along with the other sarc meds and heart was fairly stable for a couple years. I had just one arrhythmia episode that I ignored because it went away quickly. Luckily breathing problems the next day sent me to ER. I was looked at and dismissed but had another SOB spell shortly and went back to ER. This time they admitted me. It's a good thing too because I coded that night. My HR hit 299 and it took half an hour to get me back. Even with my long history this was not anticipated. I ended up having an ICD placed, and it has made me feel much safer. I have had one major shock and another minor one for V-tach episodes. This heart business did lead to my retirement/disability, which has been hard to take.

I'm involved with the Central Indiana Sarcoidosis Support Group and we would welcome anyone who is interested. We are hosting a conference in Indy on Nov. 7-8 and would invite interested people to visit http://www.indysarcoid.org for info.

Thanks.

Kay

Re: Sarcoidosis Mythology

Author: Admin (---.vnnyca.adelphia.net)
Date: 07-13-03 17:07

Kay,
Yes, you are perfectly correct. Cardiac events are perfectly normal (and to be expected) in the course of sarcoidosis. The only problem is that most physicians have no idea how to look for the arrythymia and have never heard of the controlling hormone, 1,25-D.

Take a look at a Review we wrote for JOIMR on Cardiac Sarcoidosis. An earlier version was placed online at CHEST.

Anyway, take a look over the Review (and its references) and let me know if there are any concepts I need to explain in more detail.

..Trevor..

Re: Sarcoidosis Mythology

Author: Gloria (---.clvhoh.adelphia.net)
Date: 01-23-04 12:43

Hello I have read all of your stories and some I can very much relate too. I am a 41 year old african american female and have been diagnosed with Pulmonary Sarcidosis through a biopsy. Last week I had a very sever flare up, this is the 6th time I have been hospitalized, but yet I find that when I go to the hospital and even with my pulmonologist they use me as a experiment to see what works. I have been on Prednisone for 4 years, along with Sarcoidosis, I have Asthma, and Fibromyglia. I feel like a walking pharmacy due to all the medications I am on. I agree with the gentleman who says he is tired by the time he brushes his teeth. As for the sun affecting me I have not had that problem, I have a difficult time with cold air, and being that I live in Ohio it is very cold, so I am confined to the house until the temperature rises. This disease is very scary because everyone tends to be affected differently and so the doctors tend to reccommend something different for everyone. This last flare up has cause me to be more afraid because still I am having some severe problems, hard to breath, feeling swollen, sick to my stomach, headache, I lost my voice for over 2 weeks, hardly able to swallow. I found a big help is if you learn your body, to know how your body changes with the disease to know what your trigger points are that brings on a flare up. I found that for the most part what a hospital can do for you, you can do for yourself at home, unless the flare up is too severe. I live in Cleveland and I have been in desperate need of a support group. I have searched all over and cant find a support group. I dont have anyone close to me who can understand what I am going through. Many look at me as someone who is just sick all the time. This disease along with the other medical problems can be very depressing..........at times like with this last attack I feel like giving up because I am so tired of being sick, I never ask "why did this happen too me" I just find a way to live with it but to be honest I am very tired. So Please if anyone knows of a good support group be it online or in Cleveland ohio , please please let me know. I need the support desperately. I need someone who understands. Thanks for letting me vent. Gloria

Re: Sarcoidosis Mythology

Author: Margo (---.dsl.intrex.net)
Date: 01-23-04 13:31

Gloria,

There is another person who often posts here who is from Cleveland. Maybe she will reply to your post. (I'm a Cleveland native, but I have been away too long to know about resources in Cleveland.)

There is help here. Please read the tutorials at the top of the page, and check out various threads.

Avoiding Vitamin D in your diet can help with some of the symptoms. Sarcoid sufferers make have too much of a vitamin D metabolite, 1,25 dihydroxy vitamin D3. Less vitamin D in the diet will help to decrease this somewhat. (There is a thread on vitamin D and food.)

Since it is winter, and you are staying inside as much as you can, perhaps you can test the affect of sunlight on you. People with sarcoidosis can be so much more sensitive to the sun than the average person that having a dark skin color is not enough protection. The sunlight stimulates the production of Vitamin D. (It seems that enough Vitamin D is produced for the healthy person simply from sunlight on the eyes. In that case, skin color doesn't matter.) Since it takes about three days for excess Vitamin D to dissipate, many people don't notice the affect of the sun until they spend a fair bit of time conscientiously avoiding the sun.

Some of the material presented here is rather technical for people without a medical background. We all feel free to ask questions, and usually get a quick reply from one of the moderators.

We can sympathize with you. It sounds like you have had a very difficult time.

Margo

Re: Sarcoidosis Mythology

Author: Lena (---.phil.east.verizon.net)
Date: 01-23-04 13:46

Hi Gloria

I am in Philadelphia and I was diagnosed with Sarc by a lymph node biopsy on January 9th. I am a 37yr old African American Female and I have been reading and responding since September 2003. I understand your fear and pain. It is truly a scary thing when a doctor tells you we are going to "watch it" and there is no treatment. I have severe insomnia, to the point were Im taking both prescribed and over the counter sleep aides at the same time. The only recommendation my doctor had was to refer me to a sleep clinic. Anyway I am kind of frustrated but then I feel really blessed because it can always be worst right? Please contact me on my personal email. I know I am pretty far from you but we can support each other from afar.
I will check my emails and respond as soon as I see it.

Take Care and try to stay positive. I know its hard but remember to count your blessings. I hope we can contact one another soon.

<<Admin note: We remove personal e-mail addresses. If someone wishes to contact an individual privately, contact the Administrator of the board by clicking at the bottom of the page.>>

Re: Sarcoidosis Mythology

Author: Meg (---.115.74.164.euc.wi.charter.com)
Date: 01-23-04 17:35

Lena,

With all due respect, I'd like to point out that "the Lord helps those who help themself". You don't have to continue a relationship with a doctor who will do nothing but monitor your deterioration. Yes, you could be worse. And you probably will be if you don't become proactive. Let me know if you'd like me to send you a list of doctors who might be more supportive.

Take good care,

Meg

Re: Sarcoidosis Mythology

Author: Karen (---.mtnk.rnc.net.cable.rogers.com)
Date: 01-24-04 14:00

If you live in Cleveland, the Cleveland Clinic has a support group for sarcoidosis patients, so you could try and contact them.

I was going to join their 'Commonality Study,' but when they heard that I wanted to go onto the Marshall Protocol, I was never contacted again. You see, I had my spleen removed there, because the pulm I saw at the Clinic never saw fit to think of the fibrosis on my CT scan or the swollen lymph nodes as sarc, and agreed that my lesion - filled spleen could well be lymphoma. I suppose I could sue and make a whole case of it, but I live in Canada and don't have resources or the energy to go ahead with it, and it would not give me back my spleen. I just hope that the specialist learnt a lesson and won't make the same mistake with other sarc patients in the future.

Re: Sarcoidosis Mythology

Author: Lowelle Messner (---.73.184.224.Dial1.Chicago1.Level3.net)
Date: 01-24-04 15:29

Hi! Gloria,

I live in Hudson, OH. I have a Doc in Garfield Hts. who is helping me with the Marshall protocol.

If you want to email me, I will give you his name and phone number.

Also, I will be happy to give you my phone number, if you just want to talk. When compared to this time last year, I cannot tell you how much better I feel! I started the minocycline in June.

Take care,
Lowelle

Note from Admin: I forwarded Lowelle's email address to Gloria

Re: Sarcoidosis Mythology

Author: Pippit (---.asm.bellsouth.net)
Date: 01-24-04 19:57

Gloria,

I noticed in your post that you said you have been on Prednisone for 4 years. You are right in saying that many of the doctors are just trying things to see if they work. Prednisone is a medication surrounded by many myths; it was grandfathered in and has never been adequately proven in the treatment of Sarcoidosis. It causes additional problems like osteoporosis, diabetes, and cateracts. It can also cause mood swings because it is a steroid. Doctors often still use it because they know so little about other alternatives and this is what they are told to give by the industry as a first-line drug. Additionally it can be difficult to wean from the longer you're on it, as it merely covers up inflammation and then when you withdraw it symptoms return.

However Benicar (a drug usually used to control hypertension) is used in this protocol and it works quite nicely with which to wean off Prednisone. It takes over the anti-inflammatory functions that Prednisone was prescribed for. It is much safer and reduces hormone 1,25-D in your body (a hormone which if left untreated perpetuates the inflammatory cycle of granuloma formation and symptoms). You'll feel better once you address that problem through diet, restriction of your sun exposure, and taking Benicar. Then when you add the antibiotic, Minocycline the underlying bacterial cause of your disease will be addressed; not just masked.

This is what sets this treatment apart from all the others. I know it is hard to imagine after having to live with it all these years but you can get better with the proper treatment. You've come to the right place because Trevor Marshall has the most state-of-the-art knowledge available on the subject and he is constantly reading and staying current.

In my case it only took a few weeks for my respiratory problems and pain to get better. I have Neurosarcoidosis (brain involvement); my case is not a minor one, so you can believe me when I say that this works. I am now going to college; something I could not have done before I found this project. I was bed-ridden, so short-of-breath I was going to need oxygen, and could not walk to the mailbox. I had slurred speech, small strokes, and facial palsey. For a long time I could not write at all because my motor abilities were shot in the right hand. Last summer I almost died. I had at that time more than 32 symptoms which I documented for my doctor. Although I don't think of myself as religeous in the classic sense, I believe this project is divinely guided. All the tools for healing are provided. We just need to make use of them and ask our doctors to be willing to keep an open mind. Later if it helps you, then spread the word.

I still have a ways to go but I feel so much better than I did before. It is upsetting to have a disease that can take you out at any time with no warning, but once you treat it with the right medications you will find that your depression goes away and you have more energy with which to plan your future. Hope is something we have here. Real hope.

Pippit

Re: Sarcoidosis Mythology

Author: Gloria (---.clvhoh.adelphia.net)
Date: 01-24-04 21:21

I want to thank you all for responding to my message, it is truly a godsend because support is truly needed here and for all of us who do have this disease, I understand your pain , confusion and fear. So again thank you very much. As for the myths, I read I found them silly again people not knowing what they are talking about, scaring people unneccessarily. I will contact The Cleveland Clinic about a support group, but I am in need of a good doctor here in Cleveland who can truly understand and not make me feel like it is all in my head. I have doctors but they are specialist in Lorain and because I live in Cleveland now I need doctors here who can treat the Sarcoidosis, Asthma and Fibromyglia. My heart is with you all have a blessed and healthy day. Gloria

Re: Sarcoidosis Mythology

Author: Meg (---.115.74.164.euc.wi.charter.com)
Date: 01-24-04 23:49

Hi Gloria,

When looking for a supportive doctor, most of us have has the best luck with a doctor of Internal Medicine; an Internist. Unlike a specialist, they tend to consider your entire body. And since sarcoidosis is a systemic disease, that is very important. The Marshall protocol is easy to understand and the medications will be familiar to any Internist. Some of the patients on the Marshall protocol are being followed by their Family Practice doctor or General Practitioner. Have you considered that your 'fibromyalgia' and 'asthma' are actually symptoms of sarcoidosis?

Good luck in your search and let us know if you'd like me to send you a list of possibly supportive physicians in your area.

Meg

Re: Sarcoidosis Mythology

Author: Denise (---.hay.dialup.connect.net.au)
Date: 01-27-04 01:26

Has anyone mentioned the myths

Sarcoidosis has an acute course and is usually completely cleared up within 6 mths to two years of onset and does not reoccur.

and the other popular one.

The acute course, as opposed to chronic type, is marked by EN. So if you have EN you will be cured within two years.

and its attendant

EN is common in females but rare in men.

Re: Sarcoidosis Mythology

Author: Lena (---.phil.east.verizon.net)
Date: 01-27-04 06:44

Meg

Thank you for responding and yes I would like a list of Doctors in the Philadelphia area that will be proactive with treatment. I will not discontinue my relationship with my primary doctor because with the sarcoidsis, I have several other medical issues. Even though he is not as familiar with sarcoidosis as I would prefer, he has been an angel to me with his positive attitude and encouraging words. If it hadnt been for him,I'm sure it would have taken longer than 3 months for my diagnosis. Every week he had me for this scan and that scan. The stories that I have read on the post suggest that I am fortunate for having a diagnosis so soon after the discovery of swollen lymph nodes.

By the way, I know GOD helps those who help themselves, thats why he put this post out here for me to discover and inform myself on all of this wonderful information. Because I have "helped myself". I realize that there is plenty of treatment out there, to avoid the sun and vitamin D and realized that the insomnia and anxiety are a result of the disease. So instead of depression and darkness, I have faith and light.

Thank you so much for your response and I will be eagerly awaiting that list of Doctors.

Lena

Re: Sarcoidosis Mythology

Author: Meg (---.115.74.164.euc.wi.charter.com)
Date: 01-27-04 19:07

Hi Lena,

I will send you an email listing doctors in your area who might be receptive to using the Marshall protocol to treat your sarcoidosis. These are doctors who have treated Rheumatoid Arthritis with minocyline and thus, may be receptive to using antibiotics.

But if your primary care provider has such a positive attitude, then I would strongly suggest that you approach him first. He doesn't have to know all about sarcoidosis. The Papers for Physicians will give him all the information he needs. This man sounds like a gem and he knows you. That is a huge advantage. I hope you'll give him a chance first.

Meg

Re: Sarcoidosis Mythology

Author: Roz (---.proxy.aol.com)
Date: 02-01-04 13:31

Hi Gloria I live in the Cleveland area as well leave me an E-mail and I will get in touch with you. I was diagnosed with sarcoid in 2001. I hope to hear from you soon.

Re: Sarcoidosis Mythology

Author: Admin (---.vnnyca.adelphia.net)
Date: 02-01-04 13:40

Roz,
SarcInfo is a medical-study/discussion-forum to explore the medical issues surrounding the cure for this disease.

We consequently remove all email addresses and identifying info from posts, as we understand removal of identifying features may be required by the federal HIPPA law. We ourselves still need your email address with each post (to authenticate that you are who you say you are), but that address is not revealed, except under exceptional circumstances.

That is why this forum is not set up to allow 'emotional support' questions, just to discuss the medical issues.

Nevertheless, I have forwarded your email address to Gloria, and I am sure she will respond.

..Trevor..

Re: Sarcoidosis Mythology

Author: Gloria (---.clvhoh.adelphia.net)
Date: 02-01-04 19:11

Meg

Hello I have never thought of my asthma and fibromyglia were systoms of my sarcoidosis until Friday when I went to the Cleveland Clinic. The doctors told me that due to my severe pain in my leg and chest amongst other parts of my body that there is a big chance that the sarcoidosis has spreaded and they want to do some tests, but I am so tired of being poked by so many doctors, but I will continue to fight and put my anger and fear aside and try this clinic.

They made me feel hopeful and I found that they have a clinic that specializes in Sarcoidosis so that made me feel just a little bit better. I am hoping that they can be of help to me. I am feeling a little better since coming home from the hospital, but I am still having alot of chest pain, it feels like I have a golf ball in my throat and chest, the pain has me doubled over at times because it hurts so bad, I just want to understand what is going on with my body, I dont want doctors to guess but to know what they are doing and what they are talking about, so I am going to try the clinic to see what they say.

I have a internist but she prefers to have the Pulmonologist treat the sarcoid. And thats ok because she is just being honest.

Lena thank you for writing and you can obtain my email address from Trevor, I would appreciate hearing from you.

Does anyone know how to ease the insomnia? I have been prescribed Ambien, and I have take over the counter sleep aids, but yet I only sleep for no more than 4 hours a night.

I read this article that you cant get asthma because of Sarcoidosis but I didnt agree because that is how I developed asthma.

Being on the Prednisone for years doesnt see to have made a difference, yet they keep giving it to me and increasing the dosage with every flare up. The weight gain is uncomfortable, and I have developed severe mood swings with a few psychotic episodes that caused me to take it out on those close to me. I was given Celexa to help control the anger, and it did but every doctor I see keeps wanting to treat me for depression........why? Can someone explain that to me, even when I went to the Clinic on Friday the doctor asked me the same question, was I depressed? I am just tired......why cant they understand that. I am 41 yet I feel like 141 years old most of the time.

I want to thank you all for your emails and your support. Gloria

Re: Sarcoidosis Mythology

Author: Meg (---.115.74.164.euc.wi.charter.com)
Date: 02-01-04 21:17

Hi Gloria,

I'm sorry that you are feeling so ill. Asthma is often misdiagnosed in sarcoidosis because the shortness of breath feels similar to sarc lung involvement. Fibromyalgia isn't a disease. It is the name given to a cluster of symptoms with no known cause. Many sarcoidosis patients have similar pains.

It's fine to try a clinic that specializes in sarcoidosis. When they are poking and prodding you, be sure they obtain a blood sample for the D-metabolites also. You may have to be very firm about this and use it as a condition for consent to any other procedures.

Your symptoms of chest pain and throat constriction are alarming. They suggest a high level of hormone 1,25-D. You need to get this assessed asap so you can begin effective treatment with Benicar to get the level down and begin to feel better.

You've discovered that Prednisone doesn't work. Most sarcoidosis clinics advocate the use of Prednisone or other immune system suppressants. If the bacterial theory makes sense to you, please point out to them that using immunosuppressants is contraindicated in the presence of bacteria.

Your insomnia may be a symptom of hypervitaminosis-D. Another reason to get tested. Lowering 1,25-D often resolves sleep disturbances. Doctors are especially attentive to treating depression lately because they have some very effective medications in the SSRIs. But this is just treating a symptoms. They really don't know how to treat fatigue. But that too will eventually disappear with the Marshall Protocol.

We can all empathize with how you are feeling because we have been there. Please let us know how you are getting along and what the new doctor recommends.

Meg

Re: Sarcoidosis Mythology

Author: Gloria (---.clvhoh.adelphia.net)
Date: 02-05-04 23:35

Meg

Thank you very much for the informatin and on my next appoint ment I will be sure to discuss in detail with the doctor.

I have a question can anyone please tell me what is the purpose of a
brain MRI. I am scheduled to have one today and I dont understand the purpose.

hank you GLoria

Re: Sarcoidosis Mythology

Author: Admin (---.vnnyca.adelphia.net)
Date: 02-06-04 05:41

Gloria,
An MRI scan looks at the amount of water in tissues in your brain.
It allows Docs to see inflammation and fluid that do not image that well in a CT scanner.

The problem is that Docs have no idea what to do when they see the inflammation of Sarcoidosis in the MRI results. Please make sure they don't end up doing the same things to you as Rob Haffley's mom (see the "General Questions archive to 5 Feb", near the end, to see my comments there.

..Trevor...

Re: Sarcoidosis Mythology

Author: Lisa (---.ph.ph.cox.net)
Date: 03-04-04 10:51

My father had sarcoidosis is it genetic?

Re: Sarcoidosis Mythology

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 03-04-04 11:50

Lisa,

Genetics do seem to predispose people to become sarcoidosis patients. This is discussed on the topic "Family at higher risk of sarc." The results of the ACCESS study are discussed there.

Cases of identical twins with sarcoidosis have been reported.
Sarcoidosis in identical twins
Sarcoidosis synchronously detected in identical twins

In this case, the father was diagnosed after his twin sons.
Sarcoidosis in a man and his identical twin sons

Belinda

Re: Sarcoidosis Mythology

Author: marvin (---.dsl.okcyok.swbell.net)
Date: 05-23-05 09:08

I had doctor indicated occupational exposure of chemicals that could have caused asthma. Ifit was asthma when could it have changed to sarcoidisos? ordo i still have and sarcoidisos could you please explain what you think has happened in this situation

Re: Sarcoidosis Mythology

Author: Caroline (---.dsl.stlsmo.swbell.net)
Date: 05-23-05 11:48

Marvin,

Please sign in with your current email address. The moderators are the only persons able to see it, so your privacy is preserved. I sent information to your eamil address and it has been returned as undeliverable.

In answer to your question, Sarcoidosis is caused by Cell Wall Deficient Bacteria not exposure to chemicals. Many times a person with sarcoidosis will have chemical sensitivities but that is not the cause of sarcoidosis.

In order to become well you will need to rid our body of that CWD. The Marshall Protocol will do that.

Suc Caroline

Sx.95, iritis 96. Pred. to 3-01. Pred., IV Medrol, MTX,neoral end 02, Dx. Neuro w/Cardiac sx, severe hip and hand pain, M-9-02, Benicar 12-02. MP-I Jan. 03. 1,25 D 58. Cardiac, & joint pain resolved w/MP-1. MP-II Feb. 04. Oct. 04, 25D=10, 125-D=34

Re: Sarcoidosis Mythology

Author: Lottie (---.proxy.aol.com)
Date: 05-23-05 20:01

Marvin,

Many people with Sarcoidosis were misdiagnosed with asthma earlier in their lives. What the doctor thought was asthma was probably Sarcoidosis.

I had a diagnosis of asthma many years before I was diagnosed with Sarcoid.

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:

The John's Hopkins Vasculitis Center: Prednisone Side Effects (incl. PHOTOS and PHOTOGRAPHS)
Steroid-Treated patients Have higher risk of Cardiac problems
"Evidence Growing That Inhaled Steroids, Like Steroid Pills, Can Cause Bone Loss"
"Corticosteroids contribute to the prolongation of the disease by delaying resolution"
"No data to suggest that corticosteroid therapy alters long-term disease progression"
Cochrane Review - "Oral and Inhaled Corticosteroids have no discernible effect on lung function"
Prednisone Improves Symptoms but not Lung Function in Sarcodiosis
There is no conclusive evidence that corticosteroids affect the development of irreversible pulmonary damage
Clinical Guideline For Treatment Of Arthritis Pain
Angiotensin II receptor on BALF macrophages from Japanese patients with active sarcoidosis

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