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 The material here provides useful background, but most of this site is now out-of-date.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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 Fever and sarcoidosis
Author: jane (---.iquest.net)
Date:   07-28-02 15:04

Hello,

My son has just been diagnosed with sarcoidosis. He is 20y.o. with no previous medical problems. About 6 weeks ago he began feeling fatigued and I had noticed a cough since spring when he was home. He then began having fevers which can range from normal to 104. he has night sweats and chills, the cough, slightly enlarged spleen, and increased liver enzymes, as well as increased ACE, LDH, sed rate , and serum monocytes.
His chest x-ray, abd ct scan are normal but we will be getting a lung Biopsy soon. The doctor now seeing him feels his body may be fighting the sarcoidosis and that no steroids should be used. My question is how long can we expect the debilitating fevers and fatigue to last? He is unable to function, has dropped out of his college classes, is living at home and sleeping almost 14 hours per day and resting the rest of the time. He is a very intelligent person and I know he is getting depressed from the lack of activity. He doesnt even care to read. Should we ask for steroids to help with the fever? Any help or knowledge about having these fevers would be appreciated. My son's name is George. Thanks.

Jane
 
 Re: Fever and sarcoidosis
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-28-02 16:29

Jane,
Have you talked with your doctor about an infection causing the sarcoid inflammation? Read this thread (click here) to get more info about how common bacterial infections are now known to cause Sarcoid inflammation.

Print out some of these references for your Doctor, most Doctors haven't heard of this research yet.

But he is doing the correct thing keeping your son off prednisone unless it is a life threatening situation, in my opinion. If he uses steroids prematurely it will make your son's body more susceptible to any bacterial invader.

For example, read about this poor kid (6 years old) that was given prednisone, could not fight the VZV infection she caught in hospital, and died as a result.

Make sure you get the doctor to run all three of these tests on your son's blood. As well as looking for infections very carefully in it.

..Trevor..

ps: Your Hotmail inbox is full, and when I send you an email it keeps getting bounced back by Hotmail.
 
 Re: Fever and sarcoidosis
Author: jane (---.iquest.net)
Date:   07-28-02 21:32

Trevor,

Thank you for the information. I printed all and will try to understand and will ask the Dr. about infection. I did want to ask you again if these high fevers are a normal symptom in beginning sarcoidosis. they have been looking everywhere for infection including bone marrow. I have heard alot about many patients' sxs and they just don't seem to include the high fever. My son was so tired tonight he couldn't do anything. I am getting scared that these fevers are debilitating and I don't understand their relationship to this disease.
Jane
tacc in
 
 Re: Fever and sarcoidosis
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-28-02 21:45

Jane,
In about 1973 I was at an army base where a Rickettsia-like organism was doing the rounds. For 6 weeks after that I was sick as a dog, couldn't stop coughing my lungs out! Fever, well, yes - how hot? - I can't remember.

My sarcoid wasn't noticed on Xrays for another 4 years, by which time it had started to significantly reduce my Pulmonary Function Tests. So, by having sarc dignosed at this early point, you may be in a better long-term position than I was. The delay in diagnosing sarcoidosis usually means that the fevers are gone by the time the sarc is discovered. On the other hand, profuse sweating persists until the 1,25 Dihydroxyvitamin D metabolism is brought under control. Make sure Doc does those 3 tests, and feel free to give him my email address if he doesn't understand how to interpret them.

It is very hard to identify infectious agents. If you have a doctor that is an expert in this task then you are very lucky indeed. Doc will need to hunt it down and eradicate it. These bugs can multiply inside tissue, where they are hard to get at from the outside, and that makes them very hard to kill...

Make sure you print out the Rickettsia article however, it was only published this last May, and he may have missed it.

..Trevor..
 
 Re: Fever and sarcoidosis
Author: jane (---.iquest.net)
Date:   07-29-02 14:47

Trevor,

thanks for the information. I will show it to the doctor but I myself do not completely understand the tests and their implications. He's smart so I bet he will. He has talked about trying chloraquin (malarial drug ) if George's sxs persist at this level and avoiding the prednisone. Have you heard of treatment with this and what is your opinion. Again thanks.

Jane
 
 Re: Fever and sarcoidosis
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-29-02 15:25

Jane, Chloroquine and Hydroxychloroquine are anti-microbial drugs commonly used as anti-malaria medications. I took Chloroquine when I was teaching in Papua New Guinea, and it did nothing for me (albeit at low dosage).

They sometimes have an effect on Sarcoid patients, and when they do have, it is a dramatic effect. I suspect that their favorable actions are a result of successfully eliminating active bacteria from the patients in question. There is some talk that they affect the activity of the 25-OH-D-1-Hydroxylase which converts 25-hydroxyvitamin D to the active 1,25-dihydroxyvitamin D hormonal form. I have some doubt about this.

I think your doctor is absolutely correct, institute a non-prednisone treatment regime first. But I would recommend you show him the material on Lederle Minocin, as I believe it certainly makes sense to use a multi-pronged attack, given your concern over the duration and severity of your son's fever.

..Trevor..
 
 Re: Fever and sarcoidosis
Author: Maryland (---.usno.navy.mil)
Date:   07-31-02 07:48

Trevor,

Would profuse sweating be symptomatic of 1,25 Dihydroxyvitamin D run amok? I sweat profusely when in direct sunlight even in very cool temperatures. I am on 10mg/day of prednisone (18 yr history), 600mg/day ursodiol (down from 1200mg) for liver bile duct destruction; recently stopped taking 1600mg/day ibuprofen (for ankle/knee pain), and daily supplement of 750mg oyster shell calcium w/vitamin D; and more recently advised to take lisinopril for high blood pressure. I have a 20 year history with a clinical research group and their cadre of doctors. I've decided to seek care somewhere else and have an appointment a week from today with a new doctor.

I've mentioned the sweating several times over the past years to different doctors who are well aware of my entensive sarcoid history. Not one of them seemed to think there was link. The sweating has gotten progressively worse over the last 5 years. Could this be associated with my meds or is there a "sarcoid effect?" I've been collecting all of the references and papers you've cited relative to 1,25 Dihydroxyvitamin D3 and will have lots of questions for my new physician.

Maryland
 
 Re: Fever and sarcoidosis
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-31-02 10:05

Maryland, sweating is one of the most common symptoms. Look at the fourth message from the top of this thread (click here)

Make sure you get both your D measurements and your ACE done as I outlined in this thread. You need all three values.

..Trevor..
 
 Re: Fever and sarcoidosis
Author: Bill Murray (---.ri.ri.cox.net)
Date:   08-12-02 22:07

I had the same fever problems. Fevers,night sweats, lethargic. They cant seem to find a tissue sample on me but all my blood work points to Sarcoidosis. I felt this way till they put me on Prednisone. I still am very sick, but when I have no fever, the meds make me hyper so i have been able to get things done during the day. As far as how long it will last, no one really knows for sure.

Is the ace test the only test they can rub??I have had a 97 on the two I
have had. I heard there is adoctor at MT. Sinai hospital that hs a different
test that is very accurate. Has anyone any knowledge of this test??

I have been diagnosed with what they seem to think is Sarcoidosis. I also get varying opinions that I have smolderin Hodgkin's. Im starting to think that all this money im paying the Doctors is to help them confuse me as much as they possibly can. I am a lucky person in that I dont present with a lot of the symptoms you all have. I have no visible lumps. I mainly get a fever every day and am quite lethargic. I get these incredible pains which the doctors dont seem to understand. I read last year that the government was supposed to begin treating pain as an illness. Well tell me what doctor follows that one! HA !!!! They figure that when the predisone takes away the Sarcoid ,the pain will go away. Well that is fine but if the Sarcoid dosent go away for a while, I am left to hurt like this. I honestly dont know how much longer I can do this. It is too much lately. I get so damn depressed, I feel like its not worth it anymore. Im tired of all the fevers. It is totally ruining the quality of my life. I just got married and I want to enjoy life with my new wife, but seeing me like this makes her miserable/ I cant stand it anymore. Someone please help me???????
 
 Re: Fever and sarcoidosis
Author: penny (---.cache.pol.co.uk)
Date:   08-13-02 07:07

Hi Bill,

When I first got sick the doctors thought I had Hodgkins too, but I had lymph node enlargement practically everywhere. I think it would be unusual to have Hodgkins without the lymph node enlargement but I'm certainly not an expert. When I had my biopsy done they were looking for Hodgkins but because of the non caseating tissue they found they suspected TB, I began treatment for TB before they looked for germs in the sample or gave me the hief test (which were both negative) I think that even though I didn't have TB and they later diagnosed sarcoidosis the strong anti bacterial drugs I had helped a lot.. before my biopsy was done i had a very high white blood count which after a few months on the anti TB drugs went back to nearly normal.
I used to get bad fevers and chills, I took plain old paracetamol to combat this and within 30 minutes of taking the tablets my fever had subsided and the low grade temp I had returned to within acceptable parameteres I have managed to stay predisone free and am trying to stay out of the sun because I noticed that I felt ill for days after even a minimal amount of sun exposure.. I hadn't linked this to sarc until I read the threads here.
Stay positive .. hopefully you will feel better soon
Regards Penny
 
 Re: Fever and sarcoidosis
Author: Bill Murray (---.ri.ri.cox.net)
Date:   08-13-02 19:35

hi penny.thanks for replying to my email. Hopefully i dont have hodgkins.they still have not ruled it uot. But hopefully the prednisone will start to work. What are the realistic side effevts of the prednisone. I have heard so many different things i dont know what is true. is my hair going to fall out??will my bones become brittle??how long does this stuff take to start to see side effects??thank you,Bill
 
 Re: Fever and sarcoidosis
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-14-02 07:32

Bill,
Please don't think about "side effects" of prednisone.

You take it to shut down your immune system, which it does.

The way it does this is to stop a messenger protein called NuclearFactor-kappaB from migrating from the cytoplasm to the nucleus. But this protein also is responsible for a host of other things in the body, all the way from teeth regeneration (keeping them strong) to dealing with hyperglycemia. You shut it down and the immune system stops. So do a lot of other things.

Use Prednisone sparingly and it is a valuable Band-Aid. Use it for more than a month or two and you are rolling a dice... What you can't see or feel (the internal changes) will hurt you more than things like "the hump" and hair falling out and the rest of what most people talk about. This is not a drug you want to use in anything other than an emergency.

Get your D-Ratio measured. That will give your doctors (and you) the information about where the pains are coming from.

I don't need the test data. Your ACE of 97 tells me all I need to know about the source of your pains. But ya gotta involve the Doctors in the diagnostic process So get those D blood tests done ASAP.

..Trevor..
ps: Prednisone will distort the readings from your ACE and D tests, so, if you have started the prednisone, get the tests done IMMEDIATELY...
 
 Re: Fever and sarcoidosis
Author: Bill Murray (---.ri.ri.cox.net)
Date:   08-15-02 18:25

Trevor,Thanks for the info on the prednisone. So far all i have really noticed is i cant sleep at nights,i cant seem to eat enough(i have to force myself to walk away from the food.)I havent really gained any significant weight yet.im up 15 lbs one week and back down the next week. It really wasnt my choice to go on the prednisone and i know i havent had this disease as long as some people but i am just so frantic to make this disease go away. Today was one of the worst days i have had in a long time. I am in constant pain and have had fevers up to 100 off and on all day. What really sucks is no one seems to know what this disease so getting people to understand how i feel,such as my work, is near impossible. unless someone has cancer and is going to die,they think people shouldnt even bothe rwith doctors and just go on with life. Let me tell you something, I NEVER get bruises and I got one this week from a blood test. I went to the clinic this weekend and they took some blood and actually got it easier than they usually take to get my blood but i seemed to bruise from it. Im guessing this is from the meds??what is the test you spoke of???what does it entail. I think from what you said about taking the ace test before the prednisone affects it is too late. Ive been on it almost three weeks now. again thanks fro the info.
 
 Re: Fever and sarcoidosis
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-15-02 20:17

Bruising is a very common side effect of prednsione. Take a look at a few of them.

The tests are described in this thread (click here).

I will send you a copy of our manuscript describing the inflammation and the 1,25-hormone-D. When you get your D values measured I have another manuscript that goes into a little more detail for your Doc to look at.

..Trevor..
 
 Re: Fever and sarcoidosis
Author: Cher (144.138.225.---)
Date:   08-16-02 11:54

Hi Bill,
I don't know how many postings u have read on the Phorum but it is worth reading as far back as possible because u'll see that u are anything but alone. That by itself is enough to lift your spirits some times. I have been on anti depressant medication for almost the length of my diagnosis. I hope that one day I'll be able to give them up but I cope much better with them. I was, like u diagnosed with several things prior to the final diagnosis of Sarc via a Mediostenoscopy (a biopsy taken through my neck off my lungs). I am constantly lethargic ... I sweat like u wouldn't believe (constantly explaining to people that I am not dirty or unhygenic because it makes me feel dirty) & have (with the help of MS CONTEN - controlled realease Morphine tablets) learnt to live with the constant pain. Try to stay positive & know that things will settle for u - life may not ever be as it woz but it get's easier. U learn to live with your new life & this Phorum & Trevor are absolute godsends. I have made so many improvements with Trevor's help. So don't ever think that u r going to give up. So many of us including Trevor have been there (& that was prior to this site & Trevor's help) & made it through the hardest times. Please read as much as u can & take all the info that u can possibly retain ... it will show u that u can get relief & answers.
Cheers & stay positive
Cher
 
 Re: Fever and sarcoidosis
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   08-16-02 13:59

Bill,

Have you had the blood tests done to check your vitamin D levels? I think you said your ACE was 97... I know that when my ACE was 99, my 1,25-dihydroxyvitamin D (hormone) was also very high and I was truly miserable. I understand how you feel and how tough it is to deal with the pain. The lack of sleep doesn't help, either.

As bad as you feel, you have to channel that frenzy to make this disease go away. Keep reading through the archived posts on this site because there is lots of information there. The more you read, the more you will understand and be able to discuss with your doctor.

Most importantly, you have to talk to your doctor about the blood tests for vitamin D if you haven't had them done. That way he/she can sort out what is triggering that pain. Once the pain gets better, everything else will begin to get better, too.

Take care,
Belinda
 
 Re: Fever and sarcoidosis
Author: Bill Murray (---.ri.ri.cox.net)
Date:   08-16-02 16:00

I thank god for this site every day. You have all helped me a great deal. I talked to my Infectious disease doctor today and asked him about the d test and he agreed that i should have it taken. Of all my doctors,he is the most helpful and caring. My primary is not that good and i have considered switching but im afraid of losing all the history i have with him. If he would just understand my pain is real and not look at me like im a druggie looking to geet high from him. I also learned of another test from a doctor at the walk in center last week. It was developed by a doctor at Mt. Sinai hospital and he has the rights to it alone. I was sort of discouraged because going to new york to have a blood test is kind of out of the question right now,but I found out my Infectious disease doctor has the test,he bought some a while back I think it is called the Kevine test. He said they dont like to run it until you are showing 2 or 3 signs of Sarcoidosis. right now the only test i have showing is the ace level test. No granulomas found yet. One question i would like to ask is if they can be found in your testicles. I went to see a doctor once because i found a lump not on but in my testicle.It is very small and they said it was most likely some sort of mineral deposit. Im just curious? again,thank you all for your contimued support and God bless you all.
 
 Re: Fever and sarcoidosis
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-16-02 16:08

Bill,
The Kveim test used to be used about 25 years ago but it was discontinued, throughout the world, because there is a very high risk of infection with this test.

You are injected with cells from another sarc patient. At that point you might catch whatever he/she had (in the way of bacterial organisms) as well as whatever you yourself already have.

*** I do not recommend the Kveim test ***

Calcium is deposited into all soft tissue, sometimes as lumps, if your 1,25-dihydroxyvitamin-D levels are too high. Get the D tests done ASAP.

..Trevor..
 
 Re: Fever and sarcoidosis
Author: alicia duke (---.proxy.aol.com)
Date:   06-30-05 20:39

hello, i have had sarcoidosis for 3 years , liver, spleen skin , and now lung had fevers for 2 months , had lung biospy jun 1 2005 to make sure its sarcoid and not an infection, since surgery, have developed very bad sinus problems, early mornings middle day and night, blocked sinus , is this normal with sarcoid in lungs. currently on 40 mg of predisone fevers are gone so far, doctor said he clean my lungs , do you think thats what caused the fevers
 
 Re: Fever and sarcoidosis
Author: Lottie (---.proxy.aol.com)
Date:   07-01-05 02:38

Alicia,

Welcome to SarcInfo.

Prednisone is not going to help you. We now know that Sarcoidosis is caused by cell wall deficient (CWD) bacteria which have not only learned to hide from but to live within the immune system that is supposed to be killing them. You DO have an infection, and Prednisone should not be used when a person has an infection. It completely shuts down the immune system, which is the only weapon that your body has at all against the infection. Prednisone will only treat the symptoms, and only for a while. As the bacteria numbers increase the symptoms will return. My cardiac symptoms did.

If your doctor has indicated that he has cleared the Sarcoidosis out of your lungs, he’s wrong. Perhaps this brochure will help him to realize that. It discusses the results of the government funded ACCESS study which shows that Sarcoidosis does not go away on it’s own or with Prednisone. Brochure on the NIH ACCESS Study

Sarcoidosis is a Sarcoidosis is a systemic disease, and it can affect any and all of the body’s parts. Sinuses can have the granulomas of Sarcoidosis, and sinus problems are very common with Sarcoid. Fever is also common with Sarcoid, which makes sense, when you realize that Sarcoidosis is an infection. Fever is one of the ways your body fights bacteria, and if your fevers are gone, it also shows that your immune system isn’t working properly due to the Prednisone.

The Marshall Protocol is the only treatment presently in use that will assist your body in killing these CWD bacteria that are the cause of Sarcoidosis. Please read as much as you can on these pages. Starting with the patient tutorials at the top of each SarcInfo page. The better educated you are about Sarcoidosis and the Marshall Protocol, the easier it will be for you to educate your doctor about them.

You can start to feel better by avoiding vitamin D from food and supplements. That includes natural sources, such as egg yolks, fish, fish oil and fortified dairy products. READ the labels! They’re adding it to many foods… including some brands of orange juice and bread.

You also need to avoid sunlight, and bright lights. The windows in your home must be covered and if you go outside you need to cover up completely. That includes long pants, long sleeves, scarf, hat, and gloves. You should also be wearing NoIR sunglasses inside and out.

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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