john styles

Pam, every ILD is different. I was diagnosed in 2016 and I knew I had a lung issue since I play hockey. It was progressing fairly rapidly so I went to the pulmonologist had a CT scan and got diagnosed. I did some research and found a company with many documented cases of improvement with the use of Chinese herbs (WEI Labs). Their protocol is a 90…[Read more]

Pam, every ILD is different. I was diagnosed in 2016 and I knew I had a lung issue since I play hockey. It was progressing fairly rapidly so I went to the pulmonologist had a CT scan and got diagnosed. I did some research and found a company with many documented cases of improvement with the use of Chinese herbs (WEI Labs). Their protocol is a 90…[Read more]

@cecilzlotnick

Hi Cecil,

Not sure if anyone answered you.  I have been taking Serrapeptase for almost 5 years.  But I strongly tell you NEVER take it close to any other pills or food.  It dissolves those faster than normal.  That can be really bad news with other pills (ask me how I know) and a waste if taken with food.

I slowly ramped up to…[Read more]

@shahnn

Hi Neha,

I just saw the study going on with serrapeptase.  Do you have any results to share? Please use my screen name (like yours above) so I will get notified.

stay well…
Steve

@jofac-ohandlin

Yes I consider the placebo effect on all I take but that would wear off over time as ”reality” sets in.

Having worked in medical in the USN, I try to be acutely aware of mental/physical changes but at best those will be subjective for several reasons.  The progressiveness of IPF seems to slowly affect the brain and of…[Read more]

@fmarzetta

Hi Frank,

What is your heart rate? PAH cause my heart to work hard which creates shortness of breath sometimes.  Also, O2 bottles go to 11+ L, and try wearing a face mask.

Stay well.
Steve

@charlene-marshall

Hi Friend,

Glad to see you here.  Fortunately, I am not on O2 other than at night and on the rare occasion, I need it wandering at home.  Sometimes walking I wish I had one but that is mostly my heart rate jumping a lot – don’t walk far anymore either.

Somewhat my fear is the very long flight from the Philippines back to t…[Read more]

I was diagnosed in 2020.  At that I was teaching online.  I loved it!  Being a teacher was part of my identity.   By mid 2021 I was unable to talk with enthusiasm when teaching elementary students due to shortness of breath. I tried cutting back hours, but it seemed sleep issues increased at that same time with coughing and gerd attacks. Ulti…[Read more]

@charlene-marshall

Hello Friend,

I think of you every day and know winter is a struggle – for me, it is usually February as I get cabin fever and want to be outside even sleeping in the snow as I did when younger.  On the other hand, every time I show my wife a picture of some beautiful snow-covered bucolic landscape her comment is, ”I will…[Read more]

Samuel,

You are not alone in this journey. Be blessed and reassured you will meet again.

Stay well…
Steve

I just found this post, and its relevant to me. My DLCO scores were severe at 38 for the past two years, and went to 43 with my most recent pft. ( I was diagnosed in 2020) I’ve tried to find answers, and I found this article . https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4419325/. I have an appointment in a couple weeks, and this is one of my top…[Read more]

@michael-lamkin

Hi Michael,

A number of pharmacies will provide metformin at a love cost probably about the same as the co-pay but I do not know if they require a prescription.

I have used metformin for 12 years and can’t tell if it has helped my IPF or not. I do use a bucket of supplements daily however.

Stay well…
Steve

@jaimeluciano

Hi Jaime,

I had phlegm but nearly stopped it by using Serrapeptase.  Started it over 4 years ago and take 720,000 SU nightly on an EMPTY stomach and NO other meds for 3 hours on either side. You can start at 480,000 SU.

Serrapeptase sees pills as dead protein, it dissolves them faster.  Did that once with niacin – wish I h…[Read more]

@chris-1964

Thanks Chris