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    • #26482
      Timothy Black
      Participant

      I have found improvement over the summer by attaching my oxygen tank to by bicycle. Taking it slow, from May until September I found overall improvement. Since then I have been walking and adding on slowly. I walk a little over a mile with no oxygen and only go as low as 88 but upon arriving home it goes back up to 95-98. I saw my Lung doctor on Monday. Improvement but he wants me to begin on Breo 1x day. (btw I am on esbriet with little issues to report) After a week, When I wake any phlegm now seems more cement like. And by day four my Ox levels are dropping. In order to walk today I had to wear oxygen.

      The doctor was contacted and he wants me to continue and call for an appt if it continues. So I’m going to the front line more experienced and asking for your thoughts and experience.

      Best Regard….

    • #26487
      Mark Koziol
      Participant

      Hello Timothy, it’s good you are keeping concrete data on your condition. My only speculation is there could be some type of inflammation going on in your body to cause the problem with oxygen levels. I would keep data for another week if there is no change in your current condition ask for an appointment to discuss the effects of Breo and if there is a correlation with your oxygen sats going down. Take care, mark.

    • #26489
      Timothy Black
      Participant

      @mark-koziol

      It is interesting Mark, your note on inflammation. I had a severe back injury in 86 and the injury lasted forever in various ways. In 2005 I started taking Tumeric as suggested. It was interesting because ailments, such as tightness, spasms, difficulty in sitting, walking and more slowly disappeared. It was astonishing.

      I ran out a month ago and had to wait for a reorder. I didn’t give it much thought. But tightness, sciatica, and pain while trying to sleep returned after a month. With my one mile walking I had a back spasm this morning that I haven’t had in memory!

      Turmeric arrived today. Hmmmm  Inflammation and causes. That’s interesting.

      Thanks, Mark.

      Be well!

      • #26503
        Mark Koziol
        Participant

        Hi Timothy, you are welcome. The iron chef Michael Symon wrote a book about his battle with rheumatoid arthritis. The title, Fix it with food, entails his drive to eliminate foods that are causing him inflammation. Has over 120 recipes to improve your immune system. Many of those recipes are also on the internet. Take care Timothy, mark

    • #26542
      Ron
      Participant

      Timothy,

      I think you have your answer. I have not heard of Breo as a treatment for IPF. Since pneumonia is a side effect I would be very careful to take deep breaths often to clear my lungs and avoid aspirations of food or drink.

      You always have the choice to discontinue Breo should you feel compelled to do so. That’s certainly something to consider when it involves unconventional therapy for your condition.

      I have experienced the benefits of Tumeric (or more importantly, the curcumin that is in Tumeric.) I would make sure you re-order ahead of time so you never run out.

      Inflammation is an underrated killer. Most people think of it as localized inflammation however systemic inflammation is hard to detect and identify. Systemic gets into all of our organs and usually does some form of damage. Although not directly a killer, it opens the door to a plethora of problems including cancer in some cases.

      I’m glad you are addressing the problem of inflammation and would be willing to take bets once you get back on tumeric you will feel better.

    • #26543
      Jofac O’Handlin
      Participant

      Hi Timothy,  Your efforts to maintain your exercise levels rang a bell with me. As a lifetime runner / jogger / and later a shamber (my definition of a slow jogger!), I try to maintain exercise levels. Now down to walking. I have been prescribed O2 but for the last year avoided its use. My routine is a late night walk around our village, avoiding contact with people! This takes between 30 and 50 mins, between 2 and 3 miles. The hills are now harder, taken much slower. All this without monitoring O2 levels, but presumably dropping to the mid 80’s. As soon as we get in the door I test, and have seen 85’s. Levels soon bounce to the upper 90’s but settle back to my sedentary levels 93 – 94.  I believe that I am on the cusp of ‘having to’ wear O2 when out walking.

      I thing that I am lucky on the phlegm front, yes I have it but at the moment handled OK. I take carbocisteine to ease the movement, as and when necessary.

      Re  ‘Breo’, your comments are interesting. Not being aware of the drug, I looked up the side effects, and other comments. It seems a very doubtful treatment. Question your medic!

      Tumeric? Not heard about its efficacy. How much, how offen, presumably as a curry?

      Best wishes, Joe

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