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Steve Dragoo replied to the topic Buying an Oxygen concentrator in the forum Diagnosis Information and General Questions 1 year, 1 month ago
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
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Steve Dragoo replied to the topic Auto Immune in the forum Using Our Forums 1 year, 11 months ago
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
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Christie Patient replied to the topic Unexpected Sources of Household Mold in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years ago
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]
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Kit Conza posted an update 2 years, 1 month ago
@caneelbay1 what does it mean when you say laser for your pf cough.
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Christie Patient replied to the topic Unusual Medication Side Effects: Dry Hands & Skin in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 2 months ago
@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]
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Christie Patient replied to the topic Unusual Medication Side Effects: Dry Hands & Skin in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 2 months ago
@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]
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Charlene Marshall replied to the topic Update on EGCG Green Tea Extract + Pulmonary Fibrosis Project in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 10 months ago
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]
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Steve Dragoo replied to the topic Update on EGCG Green Tea Extract + Pulmonary Fibrosis Project in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 10 months ago
@caneelbay1 – Thanks for the update, John. Stay well… – Steve
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Charlene Marshall replied to the topic Pulmonary Fibrosis and Bird Down Pillows & Quilts in the forum Diagnosis Information and General Questions 2 years, 11 months ago
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.
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Charlene Marshall replied to the topic ECGC in the forum Pulmonary Fibrosis Awareness & Advocacy 2 years, 11 months ago
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. -
Steve Dragoo replied to the topic ECGC in the forum Pulmonary Fibrosis Awareness & Advocacy 2 years, 11 months ago
@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
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Charlene Marshall replied to the topic My COVID-19 Experience as an IPF Patient in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 2 years, 11 months ago
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. -
Charlene Marshall posted a new activity comment 3 years, 1 month ago
Hi @sarvpunj, the best person to probably help with this/answer any questions is either @caneelbay1 or @drandyhall 🙂 Either of you gentlemen willing to correspond with Sarv about laser therapy? Cheers, Charlene.
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Hello Sarv,
I have been using laser therapy for IPF for the last for myself. Have had very good success for IPF, but in no way should laser therapy be considered a cure but another way to manage the disease. I have referred over 300 IPF patients to laser therapy providers worldwide and the vast majority have some subjective and/or objective…[Read more]-
Hi Andrew,
Thank you so much for giving a personal account of the treatment undertaken by you for IPF. The link sent by you will surely of interest to our Pulmonologist. I am forwarding the same to him. I am greatly obliged for this information.
Best regards.
Sarv
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Hi Charlene,
Thank you so much Charlene for the references. In fact I have already got a post from DrandyHall which is very informative. I am forwarding this to our pulmonologist for his perusal . I believe it will be professionally beneficial to him. Thanks again.Sarv
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No problem Sarv, I hope it helps! Goodluck with bringing it to the pulmonologist. If you think of it, let us know what he says 🙂
Charlene.
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Charlene Marshall replied to the topic Corona virus in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 2 months ago
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]
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Charlene Marshall replied to the topic Corona virus in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 2 months ago
Sign me to up to go where it is warm @caneelbay1 ! 🙂
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Charlene Marshall replied to the topic Laser Therapy Results in the forum Pulmonary Fibrosis Awareness & Advocacy 3 years, 2 months ago
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. -
Charlene Marshall replied to the topic Laser Treatment. Whats going on? in the forum Using Our Forums 3 years, 2 months ago
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. -
Charlene Marshall posted a new activity comment 3 years, 6 months ago
Hi Jennifer,
No problem – I know it is not really a forum that any of us want to be on, as I wish for nothing more than a cure for this cruel disease. I’m sorry to hear about your father’s diagnosis. Dr. Hall is great and has been very kind in sharing information with this forum about laser therapy. I haven’t tried it, but a few folks on here…[Read more]
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Cynthia replied to the topic Use of Prednisone and Cellcept to Treat PF in the forum Diagnosis Information and General Questions 3 years, 7 months ago
Your doctor didn’t suggest Cellcept? It’s pretty effective in treating autoimmune-related pulmonary fibrosis.
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Steve Dragoo replied to the topic Laser Therapy Results in the forum Pulmonary Fibrosis Awareness & Advocacy 3 years, 7 months ago
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]
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