@kay-kagy
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Kay Kagy posted an update 3 years ago
I followed thr protocol from the pharmacist with Ofev for the ECGC green tea tx and was very impressed with her having not only the article but also the ECGC ingredient for the tea. Even though I has 98% Extracy of Green Tea in each capsule of 500 mg. she calculated that I would need 2 capsules to meet the testing requirements. She also said…[Read more]
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Kay Kagy replied to the topic EGCG Green Tea Extract in the forum Clinical Trials 3 years, 1 month ago
Hi, I started the green Tea with EGCG yesterday after a great discussion with the pharmacist from the Ofev site. I have been on Ofev for 2 years now. So-she was so thorough in her response. First-no drug interactions with Ofev, next-she had the article and the study and said it was important if I was going to do it to match the amount of EG…[Read more]
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Kay Kagy posted an update 3 years, 7 months ago
@charlene-marshall Hi, hoping you are having fun and enjoying the conference in Texas. My question to you is regarding the new orphan drug, Nitric Oxide.for IPF. As it is now on a Cohart 2 and headed for Cohort 3 I would like to know how to find out where the studies are being held and can I find that study anywhere. As my clinic is now a…[Read more]
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Hello Kay, thank you for commenting. I am pasting a link for you to find the clinical trial you are requesting.
https://www.pulmonaryfibrosis.org/life-with-pf/clinical-trials
Hope this helps. Mark -
Hi @kay-kagy,
Nice to hear from you, thanks for writing! The Summit in Texas was great and I look forward to sharing more of what I learnt in the coming weeks via forum posts and future columns. Regarding the new drug you mentioned, I didn’t hear a lot about this at the Summit but I also spent most of my time in the ‘patient experience’ sessions…[Read more]
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Kay Kagy posted an update 3 years, 10 months ago
Hi, well after a 2 month break in Laser 4 and a downward slipping have gone back to them. Obviously there is no proof that was the reason but ??? As my latest PFT’s this month not the issue but my 6mwt bombed! So- walking other than minimal around the house or to car etc. without 02 knocks level into the toilet. I have been on Ofev for a…[Read more]
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Kay Kagy posted an update 3 years, 11 months ago
Hi tried to read the exercise with IPF site but says it has been deleted?? Sounded interesting. Can you check on your posts and see wht might be the issue? Thanks Kay
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Kay Kagy posted an update 4 years, 3 months ago
Tomorrow is my 7th Laser 4 treatment. As a former nurse I run skeptic of “alternative treatments” As a 77 year old IPF patient I at least investigate a possibility. Ofev is limited in it’s success with me but I faithfully take it even though side effects are sometimes daunting. It was on your site reading about Laser 4 from some of the members…[Read more]
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So wonderful to hear this @kay-kagy, I am happy the laser therapy proved to be helpful for you for the time being at least! I can understand your being skeptic of alternative treatments, especially with so many unknown factors out there but happy you have laser a try and are finding it beneficial so far. I haven’t tried it yet, so can’t common on…[Read more]
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Kay Kagy posted a new activity comment 4 years, 3 months ago
Hi, it was super. The chiropractor, Dr. Brignec, is exceptional. Has already taken the time to speak with Dr. Hall and followup conversation will be with the doctor after the second full week of treatment. He is doing some of his own research, his wife is an oncologist and very interested in the treatment as well. So-time will tell. I don’t…[Read more]
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Kay Kagy posted an update 4 years, 3 months ago
Oops, forgot to mention he wanted to know how to connect to Inspire as he is getting so many requests for chiropractors from people on that site. So, I gave him the web address. He said he was backlogged over 27 requests for chiropractic referrals and driving him crazy as he can’t use his computer until lines fixed! So, he apologized and said…[Read more]
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Thank you so much for the update on Dr. Hall @kay-kagy, I am so appreciative of the time you took in replying to us on his behalf. Knowing how committed he is to all of us and his patients, I can only imagine the frustration Dr. Hall is having. We all understand, and want him to prioritize himself first and take care of his needs as his…[Read more]
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Hi, it was super. The chiropractor, Dr. Brignec, is exceptional. Has already taken the time to speak with Dr. Hall and followup conversation will be with the doctor after the second full week of treatment. He is doing some of his own research, his wife is an oncologist and very interested in the treatment as well. So-time will tell. I don’t…[Read more]
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Kay Kagy posted a new activity comment 4 years, 3 months ago
Hi, this doctor of course knew nothing of the usage for lung disease but said it made sense to him. I took him info about the site, Dr. Hall and contact info. Dr. Hall had also sent me his treatment protocol which I shared with the new doc and he said he was going to try and contact him by phone as he was very interested. No hesitancy at all to…[Read more]
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Kay Kagy posted an update 4 years, 3 months ago
Hi, just got an email from Dr. Hall of Laser 4 study. He wanted me to tell the group that ATT internet is down due to wind and severe storms. He has been told may be a week before up and running. So, he has over 27 requests for referrals to chiropractors which he can’t get to yet. High frustration! He wanted to know how to connect to Inspire…[Read more]
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Kay Kagy posted an update 4 years, 3 months ago
Hi, I start my laser 4 treatments tomorrow. Hopeful but as a former nurse also cautious. I sent an email to my pulmologist explaining reason I have decided not to do the Galapagos clinical trials and opting for this laser treatment. Main reason for not the clinical trials is minimum time period is 2 years to find out if on a placebo or drug.…[Read more]
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Goodluck @kay-kagy,
I’ll be thinking of you and hope your laser therapy treatments go well. What was the response of your doctor to laser therapy, was he/she, just kind of indifferent? Its so hard when MDs don’t support us investigating alternative therapies. I know they are all about medicine, but for us, as you say, we can’t “wait” for the…[Read more]
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Kay Kagy posted an update 4 years, 4 months ago
Hi. Extremely interested in the laser 4 potential treatment. I am looking on line for the contact info for Dr. Hall so that I can locate a chiropractor or PT near me and also sign up for the clinical trial that he is working on. Maybe I missed the contact info. Could someone please send it? Thanks, Kay
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Kay Kagy became a registered member 4 years, 6 months ago
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Welcome to the PF forums Kay. Thanks for joining us!
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Kay Kagy's profile was updated 4 years, 6 months ago
