Sarcoidosis Answers for Physicians, Nurses and Patients

Here at SarcInfo, between 2002 and 2004, we identified the cause of Sarcoidosis, and successfully trialled a curative antimicrobial therapy. During 2005 and 2006 the US FDA designated the antibiotics Clindamycin and Minocycline as Orphan Products in the treatment of Sarcoidosis, and studies are ongoing elsewhere.

For information about this breakthrough, please post your questions at the current study-site, or the Autoimmunity Research Foundation.
 
This archive of the historic study is maintained by volunteers from the Foundation. The material here provides useful background, but much of it is now out-of-date.

** Patient Tutorials **

 Click here to read "WHY DID I GET SARCOIDOSIS? WHY ME? 

  Click here to read "REMISSION IN SARCOIDOSIS"  

 How a Pathologist can see Bacteria causing Sarcoidosis 

"How does Doctor measure my ACE, and my D-metabolites?"

 Weaning from Prednisone

 Protecting your eyes in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Hypervitaminosis D Symptoms    The SarcInfo F.A.Q.

Medical Abbreviations          CBC Radio Show

Protocol Phase 1-First 3 months

 

** Papers for Physicians **

Antibacterial Therapy induces Remission 

Implications for Autoimmune Disease 
(Here is Fulltext preprint)

Antibacterial mechanisms for ARBs 

Antibiotics in Sarcoidosis- The 1st Year 

Rationale for abx in Sarcoidosis 

1,25-D and Angiotensin II

"New Treatments Emerge.."

Jarisch-Herxheimer in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Protocol Phase 1-First 3 months

The NIH ACCESS Study finds Sarcoidosis does not go away - Click here to see, and print, the brochure


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 Depression/state of mind
Author: Cher (144.138.225.---)
Date:   05-26-02 13:48

Hi everyone,
My latest query is : is it common for Sarc patients to suffer from depression? A few years before diagnosis I was diagnosed with depression & was told my Seretonin levels in my brain were low. Since then the depression is much more severe & I am on anti depressants which keep me mostly stable. I do start feeling more depressed when I have the Neuro symptoms of headaches, speech dysphasia, numbness in my limbs, face etc. At the moment this has returned & it almost makes me feel as though my brain is dying. My state of mind makes me think feel that this may become permanant or that I will become totally bedridden etc. I also start wondering if because my brain is atrophying & if that continues will I lose more & more brain function? I know I need to see a neurologist to answer these questions but I am on a waiting list. Basically I want to know if other Sarc patients have the depression problems & if it is totally because of being sick or if it is unrelated.
Cheers everyone & stay positive (as I am trying to do)
Cher

 
 Re: depression/state of mind
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-26-02 14:20

Firstly, Cher, it is unlikely that you will lose brain function permanently, even with the neuro symptoms you describe. It may take a year or two for the brain to fully regain all its functionality, but our bodies are wonderful things, and the brain can recover from quite severe damage.

Personally I also suffered from depression. Many years ago. Especially after some doctor told me I only had 18 months to live. But after that 18 months had passed, and I realized that I would get through this sarc thing, and started having fun again. But nothing like the fun I am having now...

I can tell you that my depression disappeared when I got my mind (and my body) back. I am convinced the neuro effects are biochemical in origin, and are not related to any irreparable physical damage in the brain itself. There probably are sarc sufferers who have long-term impairment, but if you can navigate you way around a computer keyboard, and the Internet, I personally would doubt that there is anything really, really, badly wrong.

After I found the ARBs it took about a year for all the numbness in my right thigh to disappear, and I can honestly say that now I feel on top of the world, no depression at all. In fact, sometimes I muse about how things can change, and change so quickly...

Keep Smiling,
Trevor

ps: Have you had your 1,25 dihydroxyvitamin D3 measured yet?

 
 Re: depression/state of mind
Author: Caroline (---.win.org)
Date:   05-26-02 14:56

Hello Cher and Trevor,
First of all, I want to say that I share depression Cher. I have never been told of brain atrophy but have lesions of the brain. My numbness and inability to walk unaided makes me long so much for my former 'self'. I've had to give up pretty much every activity I enjoyed. Sometimes I will just cry out of frustration when I can't get dressed easily or try to do something that is very easy like plant a few flowers. I lose my balance just trying to bend over or put my head back in the shower to rinse off the shampoo.

I take Celexa (an antidepressant). My PCP prescribed it when I was taking high dose prednisone. I have tried to wean off of it several times. I also get angry when someone suggests you need to get back on Celexa because my frustration and tears 'bugs em'. I don't think anyone who could change places for a day wouldn't be upset! I think feeling sorry for myself is appalling but sometimes I just can't help it.

I too worry that my physical losses and memory problems are permanent. I agree with Trevor that these problems are just symptomatic. It's only as permanent as the flare up. In my case it seems the flare never dies down.

I have never had my D3 levels checked to my knowledge. This is something I need to ask my neuro this week. I just went for blood tests of my neoral level but I don't know what the others were.

Thank you for the education of the forum!! Caroline

 
 Re: Depression/state of mind
Author: Cher (---.prem.tmns.net.au)
Date:   05-27-02 03:52

Hey everyone,
Thanks Trevor, you make everything sound so terribly rational & even when I think my fears are rational you can explain them for me. You seem to have an incredible gift of explanation.
Caroline, It is amazing to me how similar our symptoms are, I suffer from dizziness when I bend over or if I close my eyes while I am standing up. Sometimes I can't get up out of a chair .. my legs just appear to fail underneath me.
I'm going to see my G.P tomorrow (because as I said I am on a waiting list to see a NEURO & will probably be at least another 12 months until I get in) so I will ask her about having the test you mentioned. Hopefully she can do it in the surgery.
Cheers everyone, this forum makes living with Sarc so much easier. Stay Positive
Cher

 
 Re: Depression/state of mind
Author: Ken (---.proxy.aol.com)
Date:   05-27-02 09:55

Also consider a "blink reflex test" for facial numbness and EMG for extremity numbness. Both are probes and sensors measuring nerve response to electrical pulses. These tests will not necessarily determine cause of issues but will validate that it's not "all in your head". That in itself may help the depression. I failed both of these tests and it made all of my doctors to set back and rethink what I had been telling them. That was actually uplifting for me

 
 Re: Depression/state of mind
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   05-27-02 16:07

Dear Cher:
I have depression in my family background but being told that I have Sarcoidosis and not finding answers not only brought me down but I became angry and frustrated and miserable. I am a person who likes to have answers.....and with Sarcoidosis there aren't many.
I went online and found the World Sarcoidosis Society....and met people who did help me with questions. Ken and Dee and Dale.
I take Zoloft now with or without Prednisone. Prednisone can make you depressed as the written material will tell you. It (drug) Prednisone reacts differently on everyone.
When you can't do what you did do......or you do it with pain....and stiffness.....who wouldn't be depressed?
Caroline

 
 Re: Depression/state of mind
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-27-02 20:10

"Severe depressive illness in the context of hypervitaminosis D" is quite an interesting article..

That's why I keep harping on everyone getting that that 1,25 Dihydroxyvitamin D3 test done. Just in case...

..Trevor..

 
 Re: Depression/state of mind
Author: Cher (144.138.225.---)
Date:   05-27-02 21:51

Ken,
Who would do the blink reflex test & EMG? I don't have a Neurologist or a pulmonologist, all I have is my G.P. I am on a waiting list (probably another year) to see a Neurologist. I really appreciate everyone's help, especially when others have had these tests & know enough to let the rest of us know. Like you say, anything to make us know that we are not crazy is all that is required.
Cheers everyone & stay positive.
Cher
P.S Trevor, I had to have my appt for today cancelled because my vision is too bad & have severe dizziness again so couldn't get there. I'll hopefully be going tomorrow. I really hate the loss of independance eg driving myself around whenever I want or need to.

 
 Re: Depression/state of mind
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-27-02 22:00

Cher, make sure your GP puts you on a priority list to see a neurologist, or to at least get you the help you need (most neuros don't seem to be able to deliver that

You may have to emphasize your difficulties to get his attention. This is a perfect time to do that.

If he won't help then I suggest you call emergency next time you can't keep your balance (dizzyness). No health system can ignore patients with symptoms like yours unless you let them get away with it.

..Trevor..

 
 Re: Depression/state of mind
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   05-27-02 22:11

Caroline,
You are right about prednisone and depression. Here is a recent report on that subject. You can link to it at http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10619339&dopt=Abstract

Take good care of yourself,
Belinda
-----------------------------------------------------------------------------------------
Ann Allergy Asthma Immunol 1999 Dec;83(6 Pt 1):495-503; quiz 503-4

The psychiatric side effects of corticosteroids.

Brown ES, Khan DA, Nejtek VA. Department of Psychiatry, University of Texas Southwestern Medical Center, Dallas 75235-9101, USA.

LEARNING OBJECTIVES: Readers will learn the importance of psychiatric
symptomatology with corticosteroid drug therapy, especially when combined with other medications. DATA SOURCES: A brief history of corticosteroid use over the last five decades was complied utilizing MEDLINE and PSYCHOINFO as sources of information which include peer-reviewed research articles, case studies, and relevant reviews in English. CONCLUSION: Corticosteroids are routinely prescribed for a variety of allergic and immunologic illnesses. Psychiatric side effects from corticosteroids include mania, depression and mood disturbances.
Psychiatric symptoms usually occur within the first two weeks of corticosteroid therapy and seem to be dose related. Treatment with lithium or antipsychotics may be helpful. Physicians should carefully monitor patients for psychiatric and cognitive side effects of corticosteroid use.

Review, Tutorial

 
 Re: Depression/state of mind
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   05-28-02 07:11

Trevor:
Depression can be caused by hypervitaminosis.....what is hypervitaminosis? Too much of a vitamin or all vitamins??
I take Glucosamine Chondroitin daily just because I thought it would help with the aching joints....can this drug do more harm than good?
Caroline Mc.

 
 Re: Depression/state of mind
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-28-02 08:55

Caroline,
I know that there are so many long words to learn if you are going to be able to intelligently discuss your treatment regime with your doctor(s). I know it might seem an overwhelming task. There simply is no way I can make the task any easier. Your alternative is to wait a few years until this material has filtered down to your doctors through conventional channels.

I have written many, many, messages explaining that the 1,25 Dihydroxyvitamin D3 excess in sarc has nothing whatsoever to do with vitamins or glucosamine. The last message I wrote was just yesterday, I remember it took me half an hour to draft it.

Please read the messages on this forum carefully. The answers you need are within the top 5 topics on the main menu.

There is a "Search" link at the top of the main topic menu and you can use it to search for other mentions of 1,25 dihydroxyvitamin D3 and hypervitimanosis that are scattered in some of the older threads.

Keep smiling,
Trevor

 
 Re: Depression/state of mind
Author: Cher (144.138.225.---)
Date:   05-31-02 09:10

Hi everyone,
Well it's me whining again. I have spent the last 5 days at home from work with various problems stemming I assume from my brain. I am getting more & more depressed just sitting here unable to talk to anyone, unable to drive anywhere & barely able to walk.
I have very severe headaches, speech dysphasia (almost unable to make any words come out & unable to think of others). My mum has written this all down for me to send, i'm falling down all over the place & my vision is doing one of three things 1: blurring really badly as if looking through water, 2: fogging as if looking through smoke, 3: showing double.
I do have a couple of positives out of this & that is that I learnt sign language through my job & can convey messages to my mum (she has a dictionary to refer to) & secondly I have a very big adorable male golden retriever who has taken on the role of guide dog for me & ushers me around sticking by my side 24 hours a day. If I fall down he is there to help me get myself back up.
I just so hate the isolation that is caused by all of this, I feel totally alone although I know I am very lucky to have the support of a wonderful family & many friends & workmates. My mum gives up so much of herself to take care of me which I feel very guilty about, she is 62 & although she is very healthy she shouldn't have to be taking on this role again, she has already done this for me as a baby.
Thanks for listening everybody, I know I am whining but it feels good to have this forum to share my thoughts.
Cheers everyone & try (as I am trying) to stay positive.
Cher

 
 Re: Depression/state of mind
Author: Caroline (---.win.org)
Date:   06-01-02 21:32

Hi Cher!
Please don't feel that you are whining here! Everyone here understands the frustration of this disease. CNS involvement adds more symptoms and hurdles. You are lucky to have such a doting and loving Mom (and a helpful Golden).

I think one way to fight is read, learn as much as possible then talk to your doctors and everyone else that will listen. Seems very few have heard of this disease. I am so weary of hearing "So, are you better now?"--"Why aren't you over this?"--"You better find another doctor, he/she can't be any good if you are still sick?"--"You've got what?"--"Why don't you try exercising, you are too sedentary." Oh well, that's my gripe for today!

Cher, have you been to the eye doc yet? What drugs have you been prescribed and with what results? I hope you know you are not alone. Caroline

 
 Re: Depression/state of mind
Author: Cher (144.138.225.---)
Date:   06-02-02 09:08

Thanks Caroline,
I do really appreciate the help & support of this site. You forgot one gripe lol..."well i don't know why you are sick when you look so well" or "you don't look sick to me".
This Friday 7th june is my MRI day so everything hinges on that. If there is more atrophication (is that how u lengthen atrophy lol) or more lymph glands/nodules I should be getting a neruologist appointment & also hopefully an eye specilaist & a pulmonologist. I'll just keep my fingers crossed until then that they don't just write me off again.
The drugs that I am on are pain killers, an anti inflammatory & an anti depressant. I cannot tolerate steroids as they make me violently ill, I get totally dehydrated etc.
Most importantly, yes I am extremely lucky to have my mum, the rest of my family & friends & of course my wonderful dogs.
Thanks again, I am feeling emotionally better than I did when I sent the last post.
Cheers everyone & stay positive
Cher
P.S, Trevor has been wonderful & kindly offered to contact a Dr he knows here in Western Australia on my behalf. That will also hopefully be another positive step. Cheers Trevor.

 
 Re: Depression/state of mind
Author: Caroline (---.win.org)
Date:   06-02-02 12:54

Hi Ya,

Oh yeah...... How could I forget the "you don't look sick, so you can't be" routine. I hate that! Better we should stay in pj's with bedhead hair and moan alot. As long as I don't get up I look just fine sitting. I work hard at it too, thank you very much! This site is an excellent read for coping with the 'You Look Good' syndrome. http://www.invisibledisabilities.com/lookgood.htm

Happy to hear you sounding much better Cher. Just keep looking good, smile and just maybe, someday we will beat this thing. There has been so many medical advances in the past few years.

Trevor, thank you for sharing your knowledge and friendship with us.

Sincerely, Caroline

 
 Re: Depression/state of mind
Author: KaitlynK (---.proxy.aol.com)
Date:   06-02-02 16:40

My grown children don't/won't take the time to learn the least thing about my disease. I almost died from high serum calcium 3 years ago. They were all at the hospital competing with each other in the sizes of their bouquets. Since then--forget it. I don't mean to sound unappreciative of their monetary and floral expressions BUT personally I'd rather have one of them sit down for 20 minutes and LISTEN while I explain some of the intricasies of this disease. Last week I mentioned prednisone and was asked about its side effects. After I listed the horrors, my son looked at me and said "Gee, Ma, it sounds kind of crazy for anyone to take something that rotten. I think you've made a poor health care decision. I'd get off that stuff it I were you" and then proceeded on his merry way. He's heard 50 times in the past that I would have died without prednisone since my calcium levels were once 17+. I'll keep my health to myself from now on, thanks.

 
 Re: Depression/state of mind
Author: Di (---.in-addr.btopenworld.com)
Date:   06-05-02 07:21

Cher,

As a lifelong depressive I can't offer any instant comfort, but your situation would depress a saint, and when the depression has a physical trigger, as in your case, there is no quick fix. All I can tell you is that depression is manageable and liveable with. I have had counselling, and read loads of self help books, but in the end it's a matter of tailoring your life to your particular needs and wants. At present, these must seem impossible to achieve, but you are obviously a fighter. I really hope things improve for you.

In support

Di

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Historical perspective on Sarcoidosis:


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

Go to the Sarcoidosis Information Discussion Info Message Board Forum

Sarcoidosis


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