john styles

@caneelbay1

Hey John,

Good incites and traveling with all the equipment we need means we need a porter.  Now if I can just find that pot of gold…

Stay well,

Steve

@caneelbay1

Hi John,

That’s an interesting connection between the lungs and the liver.  Many have liver issues later in life especially if diabetic or overweight.

stay well, Steve

Thank you for sharing your insider knowledge John @caneelbay1!

In my last home, in Washington state, our master bedroom closet was a small walk-in in the darkest, coldest corner of the house. It was COATED in condensation when we moved in and continued to have that issue until mold grew. Our clothes always smelled dank, some organic fibers…[Read more]

@caneelbay1 Hi John, thanks for getting back to me with more info. I am hoping to have bloodwork done soon, including a lipid panel to see how my liver function is doing. I hardly drink, but as I said I do enjoy a lot of probiotic-rich foods. I will keep all of this in mind as I search for answers for my skin condition. I wish you the best with…[Read more]

@caneelbay1 Hi John,

Can you tell me more about your experience with probiotics and skin issues on the hands? I am interested in the auto-immune component. I am not on any of the PF medications (caregiver here), but I have had problems with the skin on my hands, feet, and face over the past year, which doctors kind of explained as eczema, but I…[Read more]

@caneelbay1

Hi John,

Thank you so much for the update on this! Sorry to hear your saturations decreased upon taking the EGCG. Could another factor be the cause of that – viral infection, reduced air quality or something? Seems strange, like you say, that the saturations increased at first but then went down. Did you get the SED test done again…[Read more]

@caneelbay1 – Thanks for the update, John.  Stay well… – Steve

Wow @caneelbay1 – thanks so much for sharing this John! I never would have thought furniture would also have feathers in it, just when I thought I’d done everything to protect my lungs. Gosh! Thanks for sharing, this information will undoubedtly help others on here as well.

Char.

Hi @caneelbay1 ,

I loved reading the full article as well!

I have a call with Dr. Chapman, the investigator on the NEJM study on Friday about how we hope to further provide data on EGCG benefitting IPF patients. Fingers crossed, I’ll let you know how it goes 🙂
Charlene.

@caneelbay1  – way to go John controlling inflammation is crucial for many reasons but based on your saturation, do you feel laser is working? I noticed a slight decrease in energy when I returned to the Philippines (no class 4 laser here) but that could have been for a number of reasons. – Steve

@caneelbay1

Hi John,

Thank you so much for your kind words my friend! It is the collective strength of this forum and the wonderful members here that keep me going. While I am free of COVID now, the effects (ie. tiredness, lethargy etc) are still present so I really appreciate the support and encouragement. Thank you for writing! 🙂
Char.

I’ll check it out @caneelbay1 ! Thanks for sharing. It would be so good to have some formal research and reliability show the effectiveness of laser. I haven’t tried it, but I know others like yourself, Marsha and Steve really have sworn that it is helpful. Fingers crossed some literature emerges showing how helpful this can be. We, as an IPF…[Read more]

Sign me to up to go where it is warm @caneelbay1 ! 🙂

@caneelbay1

Hi John – this is great news, thanks so much for summarizing the results of your laser therapy. I’m sure it’ll help others understand how it’s helped you. Continue to do well and keep us posted, I think of you often. I also hope @drandyhall is doing well… haven’t heard from him in awhile. Take care!
Char.

Thanks so much for writing back to us @caneelbay1 – it is so nice to hear from you John! Glad you continue to do well, and I know @thom will be happy to hear from you as well. 🙂

I will keep my fingers crossed that you remain stable as well!
Charlene.

@caneelbay1

Your doctor didn’t suggest Cellcept? It’s pretty effective in treating autoimmune-related pulmonary fibrosis.

@caneelbay1

Hey John,

Any stabilization is a victory. But I also vaguely remember reading somewhere laser is contraindicated with any tumours.  I was using to much laser and it may have slightly contributed to an enlarged lymph node in my L lung.  Since I won’t be able to do any function tests until I return to the USA next year sometime, I d…[Read more]