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 The material here provides useful background, but most of this site is now out-of-date.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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 Sarcoidosis/immune or not immune?
Author: Lynn (---.elnk.dsl.gtei.net)
Date:   03-10-02 19:46


>>> Note From ADMIN: This is an old discussion from 2002, before we had discovered the cure. I am leaving it here for historical interest only, most everything in it is now out-of-date <<<

Lynn wrote:
I just wanted to pass this on about sarcoidosis as an autoimmune disease. Dr. Sharma is one of the leading sarcoidosis specialists (if not THE leading specialist) and has done much research as well as written papers about sarcoidosis. He said that it is not autoimmune but acts like autoimmune. There are a few other doctors who believe that as well. There are also some doctors who put it into the autoimmune catagory since there is no logic behind it. It behaves like autoimmune but there are no sarcoidosis antibodies.

Dr. Sharma believes it is either a virus that starts sarcoidosis or an allergen.
Formaldehyde is something that has been brought up relating to sarcoidosis. On a hunch I had allergy testing done including formaldehyde----I was positive for formaldehyde. I was drinking a LOT (gallon per day) of diet pepsi when I got sick with the cough and shortness of breath. I have since learned that aspartame turns to formaldehyde in the body. I have a friend with sarc who is not getting better--he drinks crystal light all day long because he didn't want the caffiene of diet drinks. His ACE was 170 last check!!! I keep telling him to stop the crystal light and see if he gets better. NO such luck. But it sure couldn't hurt to try giving it up.

Please know that this is not going to be for everyone with sarc. I am not at all trying to stear you in that direction just relating my story. If you think along the lines of allergen/virus then you might find something of importance. If you think autoimmune....it just means you have no control over it happening.
 
 Re: Sarcoidosis/immune or not immune?
Author: Admin (---.gtecablemodem.com)
Date:   03-10-02 20:04

Lynn,
Take a look at the link below on Tuberculosis, where they found dead bits of the TB bacilli in sarcoid granuloma. I believe that Om Sharma is correct, and after they start using PCR on the biopsy slides looking for viruses and bacteria, a few more causes of sarcoid scar tissue will be identified...

Update 1: take a look at the thread "Tick borne bacteria causes sarc in lungs". Now we KNOW that sundry bacteria cause sarcodisosis, and it is NOT an 'auto-immune' disorder.

Update 2: take a look at the thread "Bacteria cause sarcoidosis - Johns Hopkins signs on".

Update 3: take a look at the thread "60% of US sarc patients have TB bacteria".

But remember - the overactive immune system in sarc patients will identify many things as invaders that would be tolerated by a 'normal' patient. You just have to be careful to stay out of harm's way once sarc "comes a knocking at your door" (IMO)...

..Trevor..
ps: I lived in a house with formaldehyde in the walls after I had been diagnosed with sarcoidosis and the fumes did me no additional harm at all. No change in my PFTs over 3 years in that house.

pps: I found I had (and still have) a really bad sensitivity to Tartrazine (yellow #5 food coloring). I am sure that it did not cause the scar tissue, but it certainly gives me a bad migraine (and the other neuro symptoms). I also avoid aspertame like the plague. It is getting easier and easier these days to make sure you know what is in your foods. Chains like TraderJoes (www.traderjoes.com) are fastidiously checking the food they stock. They even stock milk without added Vitamin D, which sarc patients often find hard to get.
 
 Re: Sarcoidosis/immune or not immune?
Author: Ken (---.proxy.aol.com)
Date:   03-10-02 20:33

There are over 100 "autoimmune diseases" and each of them is classified as "cause unknown". Basically this means that when the immune system responds for a reason not identified, it becomes an "autoimmune disease".
Feel free to ask your docs about this, I encourage you. If we did not know today what we do know about TB and how to test for it, obtain a 'positive test result', it would be diagnosed as "sarcoidosis". Print this, take it to your docs and ask them to comment. Ken
 
 Re: Sarcoidosis/immune or not immune?
Author: Lynn (---.elnk.dsl.gtei.net)
Date:   03-11-02 18:21

Would the TB connection mean that sarc patients should be positive for a TB test? I was negative.

I do have a friend who was told years and years ago he had TB when they did a chest xray. It went away only to return 20 years later in his spleen (since removed) and liver. Makes me wonder if it was Sarc in the first place huh?

I wonder if there will ever be a time that we can have our biopsy slides sent to someone for research. I have about 4 stored at the hospital that did my lung biopsy. I was unlucky in that I had to have them go in with 3 probes and cut a piece out then have a chest tube for a week. Bronchoscopy was inconclusive.

Lynn
 
 Re: Sarcoidosis/immune or not immune?
Author: Admin (---.gtecablemodem.com)
Date:   03-11-02 19:06

Lynn,
In the editorial I have linked below, it says
"investigators found that the tuberculin skin test could go from positive, indicating tuberculous infection, to negative, indicating anergy from sarcoidosis"

So after you had been exposed to the TB, and your body had reacted (violently), they found you would expect not to have a positive skin test any more...

..Trevor..

http://www.findarticles.com/cf_0/m0984/n2_v114/21081716/p1/article.jhtml
 
 Re: Sarcoidosis/immune or not immune?
Author: Cher (144.138.225.---)
Date:   05-05-02 12:34

Hi everyone,
Well I don't know how but i have manged to miss this posting from day one (lol).
Trevor, I suppose this is one question that has probably been asked & answered many times before but I was wondering if there have been any surveys or studies into Sarcoid sufferers who have had TB Vaccines. I have no idea whether that could possibly have any effect (maybe we lucky sarcoid sufferers (or as my friend calls us ... Sarcoholics) could have something in our genes that makes the TB Vaccine react & therefore we become Sarcoholics. Probably a stupid analogy (I have no medical background so I really only know what I read & come up with in my own mixed up Neuro Sarc brain lol) but I had to ask... Cheers & Stay Positive everyone... Cher...
P.S... I know this is a different subject but I have a fellow Sarcoholic friend who after 14 years went on a 3 month course of Levaquin (antibiotic) & her symptoms have all disappeared. I saw her Dr while I was in the States & he gave me a course to no avail but the difference in my friend is unbelievable.
 
 Re: Sarcoidosis/immune or not immune?
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-05-02 12:53

Cher, many moons ago it was hypothesized that the BCG vaccination could cause a sarcoid reaction. There are lots of relevant papers similar to this one: B.C.G. vaccination and sarcoidosis, but they are so old that no text is on the web. You will find them in a med library.

The idea behind a BCG is that when the 'killed" mycotuberculin bacteria are injected by a BCG, that a person will manufacture antibodies against the mycobacteria, and then not be susceptible to catching Tuberculosis. In a sarc patient, however, the reaction to the killed DNA fragments can apparently be violent, causing granuloma to form.

Based on the recent papers (see the 'ticks can cause lung sarcoidosis' thread) the mechanism for this is now is pretty clear. While a normal person reacts to the 'killed' tuberculin mycobacterial fragments by producing an antigen, a sarc patient's body reacts more violently with a granulatomous response.

On the issue of antibiotics, my personal opinion is that, based on the Rickettsia paper alone, anybody who has progressive symptoms of sarcoidosis should initiate a course of Tetracyline antibiotic therapy, possibly with concomitant Plaquenil (anti-microbial) therapy. Regardless of whether the Rickettsia paper holds up on further investigation, the risk of a short (say, 2 week) tetracycline (doxycycline,minocycline) antibiotic therapy is miniscule by comparison with the potential benefits. In the thread on Ticks I have quoted some research which indicates that such therapy is made less effective by prednisone, and I would suggest you print out the relevant papers and discuss them with your physicians.

..Trevor..
 
 Re: Sarcoidosis/immune or not immune?
Author: meshelle (---.link2000.net)
Date:   05-14-02 10:46

just got turned on to this site by my friend cher. I had a urinary tract infection (uti) which was treated with levaquin 500mg. after 3 days i could tell no difference in my uti but my lymph nodes! I had previously gross adenopathy, now they were softening and shrinking. my gp was amazed and impressed enough to keep me on the drug for a month, then we switched to 250 mg for approx another 4 months. the changes are remarkable, my lymph nodes are still detectable upon palpatation, but no longer grossly visible. I no longer experience the fatigue and i only occasionaly experience the joint and muscle pain. When they are still painful it is easily relieved with acetaminophen. I was previously curling up in a ball in a hot bath crying. My pulmonary doesn't want to admit that this was instrumental in my remission, healing process, whatever. It doesn't really matter what he thinks does it? i have my life back,and an appreciation for it that is unbelievable. my pulmonary function tests have remained the same, but have not worsened as they were previously. i continue to show lovely areas of infiltrates in my lungs but even my pulmonary concedes that those areas are probably scar tissue. i had some skin lesions which completely disappeared with the levaquin. the others certainly diminshed and are being taken care of with the help of a wonderful dermatologist. I no longer have the stomach upset, the fuzzy headed feeling or the symptoms of fibromyalgia that i had been experiencing.

I had done the prednisone thing for a year with nothing but negative results,the natural food and vitamin regimen with absolutely no difference. you tell me. i think it was the levaquin. Oh by the way, i was diagnosed by biopsy and had been aware of having the disease for 6 years and had been symptomatic for 12 before pursuing a diagnosis.
 
 Re: Sarcoidosis/immune or not immune?
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-14-02 11:14

Meshelle,
Levaquin is a "broad spectrum antibacterial agent".

Given that we now know that Bacteria can exist in the soft tissue and still not be detectable by blood tests, it is not surprising to hear that a powerful antibacterial caused remission of your inflammation.

Whether the bacteria came from an insect bite or from inhalation, clearly the Levaquin did the job. If your pulmo doesn't want to accept this, then you need to find a pulmo that is more open to new ideas. Otherwise your current one might continue to try and prove that he/she was "correct all along", and that could be deleterious to your ongoing treatment.

Dermatologists and GPs seem to be much more willing to dispense antibiotic treatments than pulmonologists. Given that the Levaquin 'did the job' for you, it is good to know that you have a good relationship with your dermatologist.

IMO, Prednisone is just about worst treatment that a patient who has a bacterial infection can possibly be given. It reduces the body's ability to fight the infection, while simultaneously suppressing the protective inflammation. Congratulations on figuring out what worked for you, especially now that the medical knowledge is there to back up your observations.

..Trevor..
 
 Re: Sarcoidosis/immune or not immune?
Author: Mary Hall (---.008.popsite.net)
Date:   05-26-02 08:35

Dear Trevor,
Have you heard of any relationship between IgG subclass 3 deficiency and Sarcoidosis? I've found info. re: elevated IgG and Sarc. Thanks, Mary
 
 Re: Sarcoidosis/immune or not immune?
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-26-02 11:43

Mary, if you search PubMed for the words "IgG sarcoidosis" you will find a host of material on this subject.

I have personally no direct expertise in immunology, although it has always struck me as an imprecise science, relying heavily on the art and experience of the particular immunologists concerned.

Since the really harmful actions of bacteria, especially mycobacteria, result from their ability to 'fool' the T-lymphocytes into thinking that the mycobacteria are not dangerous invaders, so that the T-lymphocytes consequently do not activate to the CD-4 and CD-8 states in sufficient numbers to effectively form antibodies, I would doubt that the presence or otherwise of those antibodies was likely to become a definitive test in the diagnosis or prognosis of sarcoidosis.

..Trevor..
 
 Re: Sarcoidosis/immune or not immune?
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   05-29-02 15:54

Dear Lynn:
In response to your question about sending slides or biopsies on for research.
When I first was diagnosed with Sarcoidosis in Jan 2000, I went online to different sites. The Jewish National Medical Center in Denver, Colorado has a special unit devoted to Sarcoidosis. I called them on the telephone and they have a nurse who answers questions for you.
A patient is invited to go to their clinic there in Colorado and specimens/slides and blood samples can be sent to their laboratory if you are willing to pay for them to do the study.
Colorado is a long way for me....but it is an option.
Caroline Mc.
 
 Re: Sarcoidosis/Formaldahyde?
Author: Margie Comstock (---.cvx22-bradley.dialup.earthlink.net)
Date:   11-04-02 12:03

i just read this message and was amazed that someone is thinking that there might be a connection to Formaldahyde having some connection to helping Sarcoid along. I am very allergic to Formaldahyde and yet I drink at least 1 diet Coke with Aspartame a day. Any thoughts from those more experienced than I? Unfortunatley, most days I feel absolutlely horrible even though I am on Pred, NSAIDs, inhalers and good nutrition. My stomach is nauseous, I feel exhausted and I can't breathe very well. I have half a can of Diet Coke and I feel revived - my stomach problems go away, I can breathe better and feel more energized by the caffine. I can function for the rest of the day. I have thought that maybe I'm addicted to the Diet Coke, but rather I'm addicted to the way it makes me feel. I have tried different ways to allievate my sickness by getting some sparkling water into my tummy to stop the nausea and drink some tea for the caffine, but it is not the same. Any ideas or suggestions?
 
 Re: Sarcoidosis/immune or not immune?
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-04-02 13:23

Margie,
This sensitivity your body may have to aspartame will be quite seperate from the pre-disposition to sarcoid inflammation (although these two genetic factors often co-exist). You might also watch out for sesitivities to the food color Tartrazine (FD&C yellow #5). It is also common in sarc, as is a sensitivity to the Epinephrine added to many dental and local anaesthetics.

Advice? Wean off all the drugs, they aren't doing you any good. It might take a year or two, but at least you will then be back in control of your life. Read the tutorials at the top of this page.

..Trevor..
 
 Re: Sarcoidosis/immune or not immune?
Author: Bri (---.maplln01.de.comcast.net)
Date:   11-04-02 14:45

What (Auntie) Lynn just said is very good to know for not only tohse who suffer from Sarcoidosis, but also those who as of now do not have the disease. I really appreaciate this story because I find formaldehyde deisgusting in the first place.Hmmm.. I always knew that there was something wrong with diet Soda. Well that funny taste had to have come from something bad. Well at least we know why now. As always, your information is invaluable. Thanks so much!
Bri
 
 Re: Sarcoidosis/immune or not immune?
Author: Denise Testa (---.connect.com.au)
Date:   11-05-02 01:34

OMG Trevor, this makes perfect sense. Here I am with a sarc migraine and feeling sick to the stomach.

You keep turning up stuff that makes perfect sense. I had a bad reaction to dental Xylocaine with adrenalin (epinephrine) when I was the tender age of 12 and have never had it since.

Have you a reference for this? I would be very interested.

tartrazine. Interesting.

As to the formaldehyde, working in a path lab with histos coming in leaking (including all over the request forms). The procedure was to put them in the chemical incubators. The fumes when you got the form out would knock you for six, all because the managers and owners didn't want to trouble the doctors for a new request form.

Denise
 
 Re: Sarcoidosis/immune or not immune?
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-05-02 01:45

Denise, I have a reference on Tartrazine (click here) but I don't have one on Epinephrine.

Locals (Xylocaine and Novocaine) work fine as long as they don't have Epi in them. Here in the USA most dentists have both Epi and non-Epi injections available, although they have to be taken out of the refridgerator, so you need to call ahead,

Epi actually causes edema in the tissue rather than acting as a vasoconstrictor. You can see the edema quite clearly with the naked eye. It also blocks the anaesthetic from doing its job. This is quite apart from the longer term effects like tissue damage, migraine etc

..Trevor..
 
 Re: Sarcoidosis/immune or not immune?
Author: Nancy (---.30.178.136.dial.boston1.level3.net)
Date:   11-05-02 16:24

I had a lobe of my right lung removed this past September, because of a tumor like growth that could not have a needle biopsy done because it was too close to my heart. As it turned out, I was told I have sarcoidosis.
This is a very confusing disease, in that no one knows very much about it.
I thought it very interesting to see a comment regarding Aspertame. I'd like to know why this is allowed to be used in anything.
Go to the site: Aspertame.com and read it. You will be looking on every diet product for it. DO NOT USE IT. Lets get this off the market.

Whether on not this has any thing to do with Sardoidosis is yet to be determined, but isn't it better to be safe.
Nancy
 
 Re: Sarcoidosis/immune or not immune?
Author: Karen (---.brsr6.xdsl.nauticom.net)
Date:   11-06-02 07:10

Nancy,
I spoke about my concerns regarding Aspertame in a few other threads. I have read all of the warnings and I have eliminated this sweetener from my diet.

I thought Aspertame was the cause of unexplained, severe abdominal pain (for two years). I tried elimination diets and discovered that Aspertame might be the culprit.

It wasn't until I began to read this website, I realized that the source of my pain was Calcium with "D" supplementation. I eliminated that source and my pain completely disappeared.

Despite this "D" discovery, I have continued to eliminate aspertame and artificial sweeteners from my diet. After I had read the warnings regarding the use of artificial sweeteners, I couldn't justify their place in my diet.

I have eliminated all diet sodas, sugar free gum, mouthwash and toothpaste ( I use Tom's natural toothpaste), and sweetened processed food.

An added benefit: I have focused on a healthy and nutritious diet. I now read the ingredients and am hesistant to eat a lot of processed food. By making better choices, I have taken control of my diet. Through diet and exercise, I have lost the thirty pounds I gained during the four years I was on prednisone.

Karen
 
 Re: Sarcoidosis/immune or not immune?
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-06-02 07:26

Karen,
Glad that eliminating your D supplementation did the trick.

Yes, there is no reason to take in Aspartame or Tartrazine. And there is every reason to live a healthy lifestyle. Which is always easier when you feel better again

..Trevor..
ps: did you ever get your D-ratio tested? Now that you know it affects your pain it might be a good idea to check exactly where your levels are, and whether your D-Ratio indicates remaining inflammation or not...
 
 Re: Sarcoidosis/immune or not immune?
Author: Karen (---.brsr6.xdsl.nauticom.net)
Date:   11-06-02 09:04

Trevor,
I bit the bullet and made an appointment with my internist for a physical. I have been reluctant to start the whole round of tests again. I haven't been to a doctor since May-quite an accomplishment.

My last conversation with a doctor was with my pulmo ( over the phone) this past summer. He dismissed any discussion of "D".

He did agree to continue to taper my pred. I have been off of it since September; however, I have not checked in with him since that non-productive phone conversation.

I have felt pretty well, accept for painful elbows and general body aches. My breathing has been good. I have tried to eliminate excessive sun exposure and dietary "D".

I know I need to present your information and have a good talk with my internist. I am a little gun shy, but I will be persistant, as this is my body-not hers.

Please tell me which of your papers is the one I should give to her?

Thanks for your interest,

Karen
 
 Re: Sarcoidosis/immune or not immune?
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   11-06-02 09:37

Dear Trevor:
On the blood work: Vit D ratio and ACE levels, how many times should these tests be done during the year? Is there a limit with most health insurance companies?
Caroline McGuirl
 
 Re: Sarcoidosis/immune or not immune?
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-06-02 13:21

Karen,
I will email you the latest Doctor's-level paper...

Caroline McG,
The 1,25-D is an expensive test. In your case, you had a low D ratio, but a high 25-D. Since the 25-D is a more routine and less expensive test your health company should cover it more often. In your case, you need to get that 25-D down, and my first instinct would be to check it every 2-3 months or so. The ACE doesn't really matter, but it was high (90) so you need to watch it every 12 mos or so. Maybe watch the 1,25-D every 6 mos. Call your health benefits and see if they have a limit (they probably will not be much help, though, so you should talk with Doc and see what he thinks).

..Trevor..
 
 Re: Sarcoidosis/immune or not immune?
Author: Judy (216.94.13.---)
Date:   11-06-02 13:39

Would you send a copy of that paper to me as well. I think I have sent my dr. all the other ones available. I see him on the 22nd and will give him one more chance to prescribe minocycline.
Thanks,
Judy
 
 Re: Sarcoidosis/immune & formaldehyde
Author: Margie Comstock (---.cvx40-bradley.dialup.earthlink.net)
Date:   11-07-02 14:13

Lynn,

You sound like you are onto something that might affect me. I have sarcoidosis that is in my lungs and has started traveling aournd my system so that I am getting sicker. I also have been on Prednisone for over 2 1/2 years and have multiple problemsfrom it - diabetes, hypertension, etc. AND I am very allergic to formaldehyde. I drink diet coke which has aspartame in it. I only drink it because it is the one thing that helps me breathe (caffine) and quiets my nauseous stomach. BUt It sounds like it is work trying to get off of it. I drink one or two cans a day. Do you kno wof any studies or information on the web that addresses sarcoidosos and formaldehyde?
 
 Re: Sarcoidosis and epinephrine
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   11-08-02 11:58

Trevor and everyone,

Here is a thought: Maybe it is the abnormal 1,25-dihydroxyvitamin D found in sarcoidosis that influences our intracellular calcium and changes our cellular response to epinephrine?

The Merck Manual has this information about how calcium and epinephrine are related:
"The intracellular Ca concentration regulates a variety of other cellular processes by activating protein kinases and enzyme phosphorylation. Ca is also involved in the action of other intracellular messengers, such as cyclic adenosine monophosphate (cAMP) and inositol 1,4,5-triphosphate, and thus mediates the cellular response to numerous hormones, including epinephrine, glucagon, vasopressin, secretin, and cholecystokinin."

Belinda

PS If you scroll down about 3/4 of the page on the Merck article, you will see sarcoidosis listed as a disease related to abnormal calcium.
 
 Re: Sarcoidosis/immune or not immune?
Author: Kathy (65.121.96.---)
Date:   11-08-02 12:53

Lynn, FYI, I was "referred" to Dr. Sharma by one of the also leading Sarcoidosis physician/researchers in Denver. My sarcoidosis is extra-pulmonary. Although I have a family history (father and sister) of sarcoidosis, elevated ACE, worsening cardiac and neuro symptoms and generally getting sicker and sicker, this doctor insisted my symptoms were "psychological" - but said he would refer me to Dr. Sharma anyway.

Do I find it coincidental that National Jewish was running an industrial research study looking at beryllium as a cause of pulmonary sarcoidosis? And that they run a "Rocky Flats Clinic"? And that after my bronchoscopy, which was used as part of their research, their interest in me cooled considerably? (Not to mention the fact that I wonder if the bronchoscopy was necessary - I had excellent PFT tests, no asthma, good chest xrays and CT''s - although on one of my CT's, the history states that I have been an "asbestos worker since 1975". First, I was in Jr. High school in 1975; second I have been in healthcare since 1980. Was this a simple mistake; or the wrong xray; or an attempt to fit me into their study?) I was assured some time ago this was removed from my record; I recently received records proving it was not removed. It also took 6 months (despite repeated inquiries) to give me results of my 8 hr neuropsychological exam. Despite deficits, I was told my illness was "psychological".

I could go on and on - but my point is that you need to be careful of the agenda of the institution and physician you may see. I'm not saying anything bad about Dr. Sharma, but because of the behavior of his colleagues, I will not see him. The doctor I saw was "sympathetic" to my symptoms, but would not help me; and the Cardiologist decided he didn't need to see me again either, despite increasing my beta blocker for tachycardia (my resting heart rate before illness was 52; after illness, from 100-130 - resting). Again, I guess the point is that you need to be careful. Question things if they don't seem right!

I absolutely believe these physicians are capable of excellent care-giving and decision making - I just think things are more complicated than meets the eye about modern healthcare, especially specialty health care.

Take care, and best of luck to you!!

Kathy
 
 general
Author: Michelle (---.proxy.aol.com)
Date:   03-24-04 07:33

There is so much info to read regarding this disease! Didn't know quite where to start, so here goes . . .

I would like to know if MRI (chest-xray) is only method for detecting early stages of the disease. I did read on your site about observing pathogens in blood.
I'm 35 & was diagnosed w/hyperthyroidism (graves) a couple of years ago.
I was treated w/ radioactive therapy but continue to feel extremely exhausted (insomnia doesn't help). Specialist said this is fairly common among thyroid disfunctional patients.

Due to a genetic predisposition to Sarcoid (I also have symptoms of weakness & shortness of breath similar to my mother's twin), I want to be more proactive in identifying what is wrong.
What sorts of tests are avail to "discover" this disease? I don't think it is reasonable to feel this bad "just" from a bum gland.
 
 Re: Sarcoidosis/immune or not immune?
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-24-04 07:48

Michelle,
This is a very old thread, from 2002! We have learned so much since then...

Why do you say "I don't think it is reasonable to feel this bad "just" from a bum gland"? Don't you think that your thyroid (which was destroyed by radiation) had an important function? I do not subscribe to the notion of many surgeons, that you can cut this, and disable that and still expect the body to function properly. The more I understand about how our bodies work, the more I understand how incredibly complex and inter-dependent each function is.

Having said that, you are correct, if you have sarcoid in your immediate family then your symptoms are almost certainly caused by occult sarcoid inflammation, and not just a result of the lost thyroid.

The best way to diagnose this disase is to measure the hormone 1,25-dihydroxyvitamin-D and its precursor, 25-hydroxyvitamin-D. There is a tutorial at the top left of this page which describes how to get this done. When you have the data back from that bloodwork you can get a pretty good idea of what you are dealing with.

You can also have your bloodwork checked for soluble-InterLeukin2-Receptor (sIL2R) which is a less autoimmune-specific measure of total inflammation.

..Trevor..
 
 Re: Sarcoidosis/immune or not immune?
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   03-24-04 13:48

Hi Michelle,

Welcome to SarcInfo. There is an informal way that you can test to see if your inflammation might be due to sarcoidosis. Avoid all sources of Vitamin D and see if your symptoms improve a bit. When I did this I was convinced that the Marshalls were on to something. A year later, and in remission, I'm glad that I followed my instincts.

Meg
 
 Re: Sarcoidosis/immune or not immune?
Author: Hope (---.phnx.dial.netzero.com)
Date:   04-08-04 20:35

My problem started 10 years ago. I was placed on anibiotics for four months strait. The last one they put me on was new and the most powerful I cant rember the name but it starts with a Z. then around that time my dad died. they i was in a horable acident and a lady was killed. this is when i got sick it started off as a rash and i became alergic to thing i normaly ate. I became week and in pain. I was told i had fybromyalga, when i qestioned the doc that any where he toughed me was painfull. they said that my aumo sytems is now in over drive. years later i had a chest xray done then many more test, and filay a biopsy of my inlarged lyphnod. This illness had taken my lungs that they dont function at full copasity. i have to be carefull of what i breath and were i go. my toungs tast buds are inlarged. i have a consitant rash on my back. and my skin is old looking. iam easly tired during hot weather. I was told my anit bodies are attacking my bodie and they dont know how to shut it off. I was told to go one preginzon to help me breath but iam so senative to ever thing the sideaffect are worse than the illness. Iam not sure the extent of the damage to my bodie and the doc dont know any more than i. But i belive it was the anitbiotics they placed me on.
 
 Re: Sarcoidosis/immune or not immune?
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   04-09-04 06:55

Hi Hope,

Welcome to SarcInfo. The antibiotic you took for four months likely caused mutant bacteria to grow. These tiny bacteria develop without cells walls and are only killed by certain antibiotics and antibiotic combinations. We have learned that Zithromax, when taken alone, does not kill these pathogens.

Your long list of symptoms indicates extensive inflammation. You are lucky that you cannot tolerate the side effects of Prednisone. It would have made your disease worse and eventually given you a new disease or two.

Everything you need to know to put your sarcoidosis into remission is right here on this website. If you are interested, let us know and we'll send you a Marshall Protocol guideline for your doctor.

Feel free to ask any questions you can't find the answer to.

Meg
 
 Re: Sarcoidosis/immune or not immune?
Author: Jacqueline Philippe (---.ccra-adrc.gc.ca)
Date:   04-23-04 06:29

J'ai cette maladie que vous appelé sarcoidosis et j'aimerais en savoir plus.
Ça fait maintenant plus de 20 ans.
Est-ce qu'il y a des médicament que je peux prendre pour l'inflamation , mais mes articulations me font beaucoups souffrir.
J'ai 59 ans

Merci de m'écouter.
 
 Re: Sarcoidosis/immune or not immune?
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-23-04 06:40

Jacqueline,
Bienvenue à Sarcinfo!
Veuillez regarder l'étude (en France) par Herve Bachelez et al. (clic ici).

Herve peut être téléphoné à l'institut Universitaire d'Hematologie

Veuillez lire les "Papers pour Physicians" à la droite supérieure de cette page pour des informations sur un meilleur protocole que Bachelez utilisé. Le protocole de SarcInfo a été succesfully employé par presque 200 patients partout dans le monde.

a bientot,
Trevor
 
 Re: Sarcoidosis/calcified
Author: cumale (---.bay.webtv.net)
Date:   03-28-05 11:59

Does sarcoidosis calcify in the lungs..i have a few spots in my lungs that are calcified and my pulmonologist does not think i have sarc...but does not know what it is..he did a biopsy and it showed no t.b. or cancer..any idea on what it could be? they did a culture and it will be back this week..thank you..cumale

Moderator note: cumale's question has been belatedly answered via email.
 
 Re: Sarcoidosis/immune or not immune?
Author: emie scott (---.west.biz.rr.com)
Date:   08-11-05 12:08

Please give me some info on swelling lyphnodes by the side of armpitt
 
 Re: Sarcoidosis/immune or not immune?
Author: Meg (---.dhcp.eucl.wi.charter.com)
Date:   08-11-05 17:05

Hi emie,

Welcome to SarcInfo. Sarcoidosis often involves the lymphatic system. As you can see, there are lymph nodes located in the armpit area.

The Marshall Protocol is designed to treat the underlying cause of sarcoidosis-intracellular, antibiotic-resistant bacteria. It will resolve those swollen lymph nodes and eliminate sarcoidosis inflammation in all parts of the body.

Let us know if you have any questions about recovering from sarcoidosis with the Marshall Protocol that are not answered by the patient tutorials, links, papers for physicians or threads on this site. You can also find easy to understand explanations and support on our sister website, marshallprotocol.com. (MP.com)

Best,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
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This is an archive site, membership and posting are no longer allowed.

Historical perspective on Sarcoidosis:


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

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