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Wood and wildfire smoke

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Janet59840
Janet59840

Hey all.  I was diagnosed with pulmonary sarcoidosis in 2011 by biopsy.  I’m now 54.  Prednisone works so well on me it’s scary, but so are the long list of issues with it.  I live in Montana and forest fire smoke is already here from other states fires and the air is at moderate.  Exposure kicks of my symptoms and then I spiral down.  I wait until I have a histamine reaction from my immune system with itching in my ears etc to go in.  I just want as much of a quality of life as I can get not revolving around docs, meds etc.  I can’t find a doc who will only give me prednisone when I’m in a flare where regular modalities aren’t working.  I’m paleo and gluten free.  Almost completely decaf no dairy, don’t drink smoke or use any drugs...soooo frustrating.  I bought an infrared sauna to detox, it seems to help.  I wonder if anyone who also has environmental triggers has used oxygen?  It seems like having non-polluted air available would be wiser??  Thanks

0 likes, 3 replies

3 Replies

  • Thesufferer
    Thesufferer Janet59840

    Posted

    Hi Janet. I don't know what happened to this site but it seems every body has left this forum and there are hardly any people on here, which makes me sad.

    I really don't know the answer to your question but I just wanted to write even a couple of words because I know how frustrating it is when your question goes unanswered. It used to make me sad.

    I'm not on any kind of diet but I don't eat much anyway. I drink milk and coffee and eat bread (wheat). I take a product called Graviola -ordered from Amazon- and have been since I was diagnosed (Pulm. sarc+ joints) about 1 1/2 yrs back and I haven't had a second episode of pain since then. Minor aches once in a while and extra sensitive skin but not too bad. I don't know if this stuff is helping or not but it supposedly helps cancer patients (from what I've read about it). 

    I really hope someone will answer your question.

    Best wishes.

    • Janet59840
      Janet59840 Thesufferer

      Posted

      Dear Sufferer,

      Thank you for replying.  I will check out Graviola in the meantime.  It does seem all the propoganda on Sarcoidosis is related to no big deal and it passes quickly.  Anyone I’ve met with this disease tells a very different story.  Docs here don’t seem to listen about the symptoms and associate them with other things.  Very frustrating.

      I wish you well on your life journey.  God bless you.

      Janet 

    • Thesufferer
      Thesufferer Janet59840

      Posted

      No problem, Janet.

      I like to help others but sometimes there's nothing I can do. I just thought it might comfort you to know there are people who share your suffering.

      I really think us patients suffering from sarc know more about the disease than most doctors do. It took 6 doctors to diagnose me because 5 had no clue including a doctor at the emergency room who thought I was there wasting his time.

      Even friends think we're exaggerating because they don't see or feel what we feel and are experiencing. So frustrating.

      Take care and yeah try this Graviola stuff even for a while to see if it's any good. It's pretty cheap.

      Peace.

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