Mayo Clinic Connect
Is there any one out there that has PF?
My name is Larry – I have recently been diagnosed with Interstitial lung disease, which I think is the same thing. My condition improved when I quit taking statins. I started taking the statins after a heart attach about 8 years ago.
My shortness of breath and congestion are still there.
Have you found anything that helps or can relieve?
Larry my name is Lyn.I am from Australia and I have Pulmonary Fibrosis caused by Rheum,Arthritis and I am trying to contact someone with same type of PF.So far my worst symptom is Chronic Cough & some breathlessness.Wrst time for me has been March 2012 when I had a chest infection–Roxar 3 Antibiotic helped.
It sounds as though your condition has been caused by medication;My Respiritary Spec. has told me that as disease progresses I will have to go on large doses of
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My husband 61, was diagnosed with IPF in November of 2011, he is deteriorating very quickly, a set of lungs is his only hope. We have been turned down my Tampa General and Jackson Miami Hospital. He has to be an “otherwise Healthy being” the first dr we had did nothing, and now I find the issues he has are related to the IPF and disqualify him for lungs. I am desperate, I want him to live…..on and off of steroids and xanax, spent a week in hospital three weeks ago for respiratory failure. Anything anyone knows of to help, please send me info….
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Sorry to hear about you husband. I have been diagnosed with IPF my self and don’t really know what to expect. A friend gave me a website http://www.biomediclabs.com. I’m thinking of giving their products a try. Have you heard of them?
Hi Terries. You mentioned your husband was DX 2011. What treatment has he been on. I was DX in 14 and on Ofev(1 year) 02 24/7 2lts and swim 3 days a week… It’s important to ex cerise and get the 02 his body needs. How are you? Hang in caregiver he needs a strong you too…..
I am taking Perfinidone 6 capsules daily through a research study since 5-25-2016 and it is supposed to slow the progression. It does almost eliminate my cough but it has side effects that can effect some but not all. The biggest one is fatigue.
I just found this very old thread, so I hope someone will still read it.
In 2011, an X-ray after a minor car accident showed I had pulmonary fibrosis. The doctor prescribed Serratide but no other medications.
Having read a lot about it, I decided to try serrapeptase – this is an enzyme that dissolves fibrin. I continued to take it, and after a CT scan last week, today my doctor told me I have no sign of lung fibrosis.
I do have emphysema, so I still have problems, but I was amazed that the fibrosis had gone. Sadly, the doctor showed absolutely no interest in how I achieved this, given that it is supposed to be incurable.
Welcome to Connect @spicegirl. While this thread was started in 2011, members have been contributing to it more recently as well. If you keep reading you’ll meet @nancyligon @pd02 @powderpuf @inspiration @muskiemama and others talking about pulmonary fibrosis.
Is it possible that you were incorrectly diagnosed with PF?
Colleen, I would have to dig out the X-rays and get a second opinion.It was not idiopathic fibrosis, it was probably caused by smoking, if that makes any difference.
I saw a different doctor a couple of years ago who sent me for the first chest X-ray since the accident. He told me the PF had not advanced, which means it was there, but had not progressed. So no, I doubt there was an incorrect diagnosis.
I’m interested in this info though it mY be older, I want to find answers and what works. LINDAWEST1942 aka @tula
Serrapeptase is what she used for IPF. A bit of research for me to do I hope. Bless you for sharing with others.
Hi Larry, I’m rally curious on what you said about your condition improved when you quit taking your statin, how did it improve?
Hi Tula (again) lol,
I have tried taking Serrapeptase and a high dosage of it. My Pulmonologist has never heard of it, but didn’t discourage me from it. I tired it for two months but didn’t see and improvement so I stopped. Not saying is doesn’t work (guess I’m impatient) but for the cost with no scientific proof of success, well I’m somewhat skeptical. I do understand and use homeopathic ideas for other things (my sisters and daughter is totally sold on the homeopathic stuff). I know may daughter has come across with an essential oil that helps alleviate migraines with her daughter (11 yrs old now 13) and my sister says it works for her too. So I ‘m not so closed minded on other things that can help people for conditions they/we suffer with. I guess I was at least expecting so little improvement on my breathing after using it (serrapeptase). I do hope you find something that helps you, and if it does please drop me a post.
Of course, I will keep positive or not so positive info I learn as we continue this journey to better info and better health Thanks for the info re:serrapeptase. Have a good day.@tula
Hi spicegirl, I tried serrapetase for two months and didn’t feel any different, (maybe expecting to much to soon, I don’t know). IF you CT showed the fibrosis was gone did you feel an increase in your lung capacity for breathing again? How long was your period of taking the enzyme?
you might try the mayo clinic transplant department. in general transplants candidates have strictt criteria.
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