Forum Replies Created

  • Sandra Gray

    Member
    November 2, 2023 at 8:55 pm in reply to: Heart/Lungs Correlation?

    I really enjoyed your discussion of the possible connection between a heart issue and your IPF. It seems to demonstrate that IPF is a complicated condition and we tend to blame all our symptoms on the fibrosis when in fact that symptom could be improved by treating another condition. So glad to hear that you are improving now. It is also reassuring when we then find something in the peer reviewed literature to support our hypothesis!

    I had a similar experience after my pulmonologist chided me for refusing to be vaccinated and chose rather to follow the FLCC protocol for Covid infection prevention. It included ivermectin and some anti inflammatory supplements such as NAC, Quercetin and Vit C and D and berberine. I began feeling well after a few weeks and soon no longer needed supplemental O2. My chronic cough stopped and I can walk 3-4 miles daily without feeling breathless. Oxygen used to drop in the low 80‘s with any exertion, even walking, but now stays above 95%. Like yours, It was a serendipitous reversal of symptoms! There is so much more to be discovered about this disease.

  • Sandra Gray

    Member
    January 10, 2023 at 8:35 pm in reply to: Healing scar tissue zoom call recording

    Excellent discussion about the healing of scar tissue!   I too began Yoga and breathing exercises about a year ago and have seen much improvement in my lung function and exercise capacity. Thanks so much for sharing this meeting.

  • Sandra Gray

    Member
    January 10, 2023 at 6:10 pm in reply to: Healing scar tissue zoom call recording

    Hi,

    i would like to listen to the recording on healing scar tissue in pulmonary fibrosis.

    thanks so much,

    sandra

  • Sandra Gray

    Member
    October 6, 2022 at 3:07 pm in reply to: Vaccinated PF people and COVID 19

    <p style=”text-align: left;”>I was exposed to Covid in December at a family dinner.  It was our first time being in a group like that since Covid was detected in our community.  My husband and I both tested positive for Covid a few days later.  Neither of us is vaccinated but follow the FLCCC (Frontline Doctors) prophylactic protocol.  After testing positive, we began  the early treatment protocol based on ivermectin. Fortunately neither of us became ill and only experienced mild fatigue for a couple of days.   I was fearful that the infection might affect my breathing  and arranged to get the monoclonal antibody infusion in case needed.  My illness was mild though and I decided not to get the infusion.
    I use supplemental oxygen as needed with exercise.  Although formally diagnosed only a year ago, my pulmonary  fibrosis was first detected  in a scan for an unrelated problem about 8 years ago.
    It seems responses to Covid are so varied  and dependent on the individual.  I hope your experience with infection will also be mild!
    </p>

  • Sandra Gray

    Member
    July 6, 2023 at 2:46 pm in reply to: How did you find you had fibrosis?

    Had acute breathing issues, fever,etc.   when I was out of town visiting my physician daughter and urgent care diagnosed the X-ray as pneumonia. Antibiotics didn’t help, coughing continued and finally put on anti fungal for possible histoplasmosis.  That was likely since I have a small organic farm and keep chickens and goats. CT scan several months later in 2013 showed mild fibrosis.  Didn’t see a pulmonologist until last year when I was having shortness of breath and using O2 with exercise.  A CT scan showed it had definitively progressed and was given that fatalistic diagnosis of  the very short life span.  I rejected that and prayerfully took a proactive approach and now take  several herbal supplements recommended in a Chinese Medicine treatment, began doing breathing exercises regularly and joined a Yoga class.  I’ve ditched the O2 and now walk/hike several miles a day.  Celebrated my 75th birthday in March by completing a half marathon.  Cancelled my CT follow-up scan  in May because I feel well and think radiation exposure might upset the apple cart.
    Best of luck to you on this journey and try to stay positive!