Sarcoidosis? Anyone Else Out There have It?

Discussion in 'Health Nutrition and Supplements' started by rwaddell, Sep 3, 2003.

  1. rwaddell

    rwaddell New Member

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    I was diagnosed with Sarcoidosis around 6 months ago. It is a disease that has an unknown cause, but primarily shows up in the lungs first and can spread to other parts of the body in degrees. It is an auto immune system disease where the bocy is attacking outside elements ( Unknowns) and it builds up masses of immune cells in the lungs or other areas. It also causes joint pain as well. I have been cycling with this and it has helped. However, I had to have my rear hub replaced and it took almost 2 weeks. Since not being on the bike for 2 weeks everything feels crappy. Does anyone else have this and would like to talk about it?
     
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  2. conradski

    conradski New Member

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    Hi there


    How is you sarcoidosis? I was diagnosed with sarcoid in Sept 2005. Having been very fit it has really set me back, causing breathlessness on hills etc. Having said that I was off the bike for 3 months and only just started again in December/Jan.
    Now starting to feel better and ceratinly feel good after the exercise - it seems to help with dealing with the disease, the joint pains and the itching. I get large red itchy boil type patches on the shins, back, chest, shoulders.

    Interested to know if you have found any foods that help.

    Kind regards
    Conrad
     
  3. benkoostra

    benkoostra New Member

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    I don't have sarcoidosis, but I do have multiple sclerosis, which is also an auto-immune malfunction.
    The short answer is : take turmeric. It has pronounced anti-inflammatory qualities. The less prednisone you take, the better off you'll be, and your loved ones will be spared the mood swings. It has a lot of other beneficial properties that are just coming to light (anti-cancer, pro tumor-necrosis, stronger anti-oxident than vitamin E, seems to down-regulate the expresion of certain genes that relate to immune function, etc.
    I know this sounds like some kind of salesman BS, but it's not, I was diagnosed in 2000, and spent 3 years just getting worse and worse. When I lost most of the sensation in my right hard, I decided that maybe the standard medical treatments were somewhat inadequate, and did a lot of research into alternatives.
    I have had no noticable progression in the disease in almost 3 years. I buy 00 gelatine capsules in bulk, and fill them with turmeric myself. I take about 6 to 8 caps a day, which is about 4 to 6 grams.
    I'm sorry to come on so strong, especially in my forst post! But I haven't needed a steroid treatment in 3 years. Sometimes I even forget I have it. I don't know if it will help you, but it's really worth a shot. You can buy good quality pre-filled caps at vitacost.com if you want to try it out for a while.
    And don't bother asking your docter about this or any alternative treatment. You'll just get blank stares.

    Stay positive!
     
  4. conradski

    conradski New Member

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    You can buy good quality pre-filled caps at vitacost.com if you want to try it out for a while.
    And don't bother asking your docter about this or any alternative treatment. You'll just get blank stares.

    Stay positive![/QUOTE]

    Thanks for the tips - II', going to my local health store for turmeric - well worth a go. Keep well and I'll stay positive if you will too!!

    Cheers buddy
    Conrad
     
  5. benkoostra

    benkoostra New Member

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    Thanks for the tips - II', going to my local health store for turmeric - well worth a go. Keep well and I'll stay positive if you will too!!

    Cheers buddy
    Conrad[/QUOTE]
    That's great to hear.

    Here a recent article you may find interesting:

    http://www.theithacajournal.com/apps/pbcs.dll/article?AID=/20060216/LIFESTYLE18/602160330/1025

    This one is especially interesting regarding auto-immune/ inflammatory conditions:

    http://www.agrawal.org/PDF/SPICE-REV.pdf

    You probably won't feel any different when you take it, unless you have pain that is directly related to inflammation, but don't stop. It really helps. Let me know what happens.

    Staying positive is my forte!

    Take care -Ben
     
  6. ncc74656m

    ncc74656m New Member

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    These guys are correct. If I understand correctly (not knowing much about the disease) it's much like an allergy, except to pretty much everything. So your body does damage to itself in an effort to fight off non-existant disease (or non-threatening). Avoid treatments that INCREASE your immune response. Also, you might try an anti-histamine since this is frequently a cause of immune responses. My advice is to find out from your pharmacist and doctor what kind of allergy medicine is an antihistamine, and try it. I believe Benadryl is, so you could try a store brand of Benadryl and see if it helps. Give it a week or so, (AFTER MAKING SURE THAT IT WILL NOT NEGATIVELY AFFECT YOU!!!) and see how you feel.

    Again, I would double check this advice, as I am not a doctor, but it is reasonably sound from what I know. And of course, always check about interference or interactions with a pharmacist (they know way better than most any doctor!).
     
  7. benkoostra

    benkoostra New Member

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    An auto-immune disease is by definition a condition wherein the immune system reacts against the body's own tissues. Usually this takes the same form as a response to foreign antagonists (like pollen, etc).
    You logic about anti-histamines is good. I discovered a few months ago that benedryl greatly reduces some of the symptoms of MS and return my "dead" hand to near normal function (again, this is a use of a drug that is quite "off-label"; so much so, that my neurologist had nothing to say when I told him about it. So much for his inquiring mind. However no one else I know with MS has had this dramatic response. But benedryl is pretty benign stuff. It does make you very sleepy, though.
    I have no idea whether it would benefit sarcodosis. All you can do is try.
     
  8. ncc74656m

    ncc74656m New Member

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    Thank you. I have a friend with something similar to MS, and though I suspect she would be kind of bitchy if she were more... sharp... she's a sweety in some ways, and I care about her. Enough to actually do the MS Bike Ride for her. Gave her my number from the previous year. Anyway, when I first met her, I did some research into MS, and found out about that, and have made such recommendations in the past.
     
  9. benkoostra

    benkoostra New Member

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    What does she have that is similar to MS? Transverse myelitis? The CNS is a strange and wonderful thing!
     
  10. ptlwp

    ptlwp New Member

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    Ive got hypothyroidism and arthritis. I'm being worked up for some sort of auto immune type of problem.

    I may have to see a university doctor across the river.

    Itching, sinusitis, hives, hemoptysis and epistaxis.

    My own Mum is calling me a hypochondriac. I wish it were so. But, they do say that stress can make one ill.

    It is a stressfull world we inhabit these days, for sure. We'll see how my blood tests come back next week.

    My husband doesn't think it is even FUNNY to mention tertiary syphyllis!!!! (It's not, that either).
     
  11. ncc74656m

    ncc74656m New Member

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    I'm not sure of the exact name. Basically, she was born with a degrading myelin sheath, and that's the cause of her issues. It will completely degrade by the time she's in her early 30's, and basically, she's going to wind up in a wheel chair as her feet and hands will curl in.
     
  12. McSpin

    McSpin New Member

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    I was diagnosed with sarcoidosis 16 years ago. It went away by itself within a year, without treatment. I mention this just to let you know it can happen.
     
  13. ptlwp

    ptlwp New Member

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    Seems I am not eating right. I have iron deficiency anemia. No wonder biking was an awful time, last I went out.....next time, things will be their usual baseline of poor excercise tolerance!!!!
     
  14. rainforest

    rainforest New Member

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    Hi,

    I have sarcoidosis, developed first symptoms in 2005, went on prednisolone in january 2007, just come off them and disease seems to be stable. Used to be a good club cyclist but my lungs will never be normal again and have lost probably about 10% of their performance. Still time trial on a club level occasionally and ride my bike 3 or 4 times a week. Its a horrible disease but im alive, which is better than the alternative!
     
  15. Mitzipars

    Mitzipars New Member

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    My uncle was in the hospital and I was able to locate this diagnosis just from internet and his symptoms. He had 5 doctors on this and in there a week, thinking it was tuberculosis. Since, he and I had a lot of the same type of symptoms it made it easier and as to what to do.

    Sarcoidosis is serious and you MUST have a doctor that knows what they are doing! If you wish to indulge further, please write me and tell me what is being done to this point. I know this is private so feel free to email me @ [email protected]

    M. Parsons
     
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