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    • #27639
      john styles
      Participant

      Hello all been a while since I posted but I thought I would share what I suspect is calling our disease and it appears to be auto immune. We are told to take the medication available to slow the scaring, supplement’s to slow the scaring, oxygen to help us breath and then transplant with drugs afterwards  to stop the body from rejecting the new lungs or should we just say auto immune?  Myself I have done laser twice a week for the past 26 months and will go to once a week starting next week,  my laser treatments addressed the inflammation but not the cause but did give me relief but the disease marched on. I have had usual intestinalis pneumonia for 4 1/2 years and can not take the drugs available. I have tried everything to slow the disease praying, eliminating feather pillows and comforters, ultra violet lights in the ductwork, checked for radon and treated. Recently my sitting saturations were 86 to 89, then I put in two stand alone  Allen Hepa filters and stopped having my wine and stopped higher fat snacks in the evening. 2 days later my sitting saturations jumped to 92 to 96 steady now for a week.  Here is the article from Spain  regarding research on feather pillow done about 14 years ago https://www.catalannews.com/society-science/item/feather-pillows-can-cause-a-chronic-and-eventually-fatal-breath-shortness-disease-according-to-a-catalan-study.  Myself I have had auto immune since I was 8 years old. Rash on my legs and 30 years ago with hands and mouth ( luken planus) and 10 years ago with probiotic’s.  May seem crazy but something we drink can effect our lungs. As for me I am grateful the sitting saturation’s have returned to normal and hoping the exercising saturations will improve.

       

       

    • #27643
      conni
      Participant

      @caneelbay1

      I cannot get the article you referenced and am very interested in it. When I click on it it just says page not found. Also where are you getting your laser treatment

      thank you so much for a really interesting thread

    • #27656
      john styles
      Participant

      if you google  “feather pillow can cause chronic ” it comes under Val de Hebrons   from 2013.   I also raised my prednisone from 5 mg to 10 mg, I was put 0n 50mg in Jan 2018 and got down to 5mg.  Funny, I do not now what caused the stabilization while sitting. I had just gotten off a week of penicillin due to I had what may have been the flu, so I stopped the wine and the chocolate and higher fat snacks, raised the prednisone and did a one week course of penicillin and then the stats raised from 86 to sometimes 96 but staying 93 to 94 while sitting.  These doctors are treating the symptom’s, not what causes our disease, they do not now what causes our lung to deteriorate in most cases. It sure is a lot of trial and no result to get where I am.  The laser is easy to find chiropractors who use them. Google chiropractor’s using laser then call them and ask if they are using a class 4, I have never been turned down after I explain my situation. The cost can be $25 to $75. I pay $42.50 here in Florida but when in the mountain’s of North Carolina I pay $25 per session.  God bless us all as we try to work thru this disease. The laser clears the inflammation but did not stop the disease in my situation.

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