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Bronchiolitis Obliterans with Organizing Pneumonia (BOOP)

Posted by oakbourne @oakbourne, Aug 19, 2019

I've had life-long silent Celiac Disease and didn't know it. Bloated stomach and Brain Fog. Internal shakiness and fatigue. Then I was diagnosed with Microscopic Colitis, (MC). Okay! Then I was diagnosed with BOOP Pneumonia. It's Idiopathic or doctors don't know what causes BOOP. My lungs were filled with inflammation. The doctor did an X-ray and biopsy of my lungs and I witnessed my lungs were pure White, INFLAMMATION!!! I found out that Gut and Lung tissue are similar or the same. You can die from BOOP PNEUMONIA. I was lucky! I survived BOOP. I was prescribed Prednisone long term. HORRORS! I did research and ordered the book - "BOOP: You're The Boss". You can cure BOOP with Macrolides - clarithromycin and azithromycin, and bypass the deadly steroids. I informed my pulmonogist and that's what he uses now. I think life-long silent Celiac Disease and Microscopic Colitis caused BOOP PNEUMONIA. I know MC is an autoimmune disorder where your gut is inflamed and irritated. The inflammation has to go somewhere, so it goes to the lungs. That's my humble opinion and two cents worth. Don't play around with BOOP PNEUMONIA!

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spudmato | @spudmato | Nov 24, 2020
In reply to @johnbishop "Hi Dorothy @oakbourne, Thanks for the private message. I thought I would answer your message in..." + (show)
@johnbishop

Hi Dorothy @oakbourne, Thanks for the private message. I thought I would answer your message in the discussion you started as your information and questions may be helpful for other members also. You mentioned that doctors should not prescribe prednisone because of possible side effects that it can cause osteoporosis and cataracts. Also, it is like you say difficult to taper off prednisone.

I've been prescribed prednisone twice by my Mayo rheumatologist for 2 separate occurrences of polymyalgia rheumatica (PMR). It was a miracle drug for me as I've heard it was for others. Within hours of taking my first dose the pain was gone and I had immediate relief. I also spent 3-1/2 years tapering off the first time and when it came back 6 years later, I spent another 1-1/2 years tapering off. It is not meant to take for the rest of your life and it can be like you say, hell to taper off and end taking. There were no ordinary antibiotics to my knowledge that can help with PMR.

Here are a couple of references I found on prednisone, osteoporosis and cataracts. I think it's good information but as a patient it does provide you with more reasons to learn as much as you can about any health condition you have and what the available treatments are so that you can have the discussion with your doctor to weigh the risks and benefits for each of the available treatments.

- Glucocorticoid-Induced Osteoporosis and Osteonecrosis: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3417039/
- Cryptogenic organizing pneumonia—Results of treatment with clarithromycin versus corticosteroids—Observational study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5612459/
- Bronchiolitis Obliterans with Organizing Pneumonia (BOOP): https://foundation.chestnet.org/lung-health-a-z/bronchiolitis-obliterans-with-organizing-pneumonia-boop/

Can you share your reference to the book written by a well known lung specialist who stated ordinary antibiotics will cure Boop Pneumonia without steroids?

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John & Oakbourne,
It is often the "best worst choice.
With COP (BOOP) action should be taken. I have been on prednisone for 3/4 years. I'll be on in forever.
I have osteopenia.
Is it a result of the prednisone, possibly. It may be attributable to other issues. The prednisone is as likely to lower your immune system at high doses. Still it is the Only medication that I have taken for COP. My doctor told me that there was another option, but it was effective but offered a more significant side effects.
The question is, is the cure worse that the disease? I doubt it. The COP kill you if not managed.
I have a Reclast shot yearly for the osteopenia.
I haven't heard of a substitute for oxygen.

Good luck, and keep considering the best advice of your medical team.
Don't hesitate to ask questions!!

REPLY
oakbourne | @oakbourne | Nov 25, 2020

Hi friends and people who have suffered from BOOP. I ordered the book, BOOP: You're The Boss. You can manage it. Five Steps to Take Charge of Your Boop. Gary R. Epler, M.D., wrote the book and is an inspiration on the disease. I informed my lung specialist who had no idea. Please look up Dr. Gary Epler. He has a treasure trove of information that can help you. Dorothy Rockwell Olson Williams

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John, Volunteer Mentor | @johnbishop | Nov 25, 2020
In reply to @oakbourne "Hi friends and people who have suffered from BOOP. I ordered the book, BOOP: You're The..." + (show)
@oakbourne

Hi friends and people who have suffered from BOOP. I ordered the book, BOOP: You're The Boss. You can manage it. Five Steps to Take Charge of Your Boop. Gary R. Epler, M.D., wrote the book and is an inspiration on the disease. I informed my lung specialist who had no idea. Please look up Dr. Gary Epler. He has a treasure trove of information that can help you. Dorothy Rockwell Olson Williams

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Thanks @oakbourne - here is the link on Amazon for the book - BOOP: You're the Boss (You Can Manage It): https://www.amazon.com/BOOP-Youre-Boss-You-Manage/dp/0615547591

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