- This topic has 3 replies, 4 voices, and was last updated 1 year ago by Kris manian.
February 13, 2019 at 3:48 pm #16736Charlene MarshallKeymaster
I am desperately trying to figure out a solution to people’s posts getting “lost” in cyberspace, and to organize the laser therapy thread so replies don’t take so long to find. I am currently educating myself on WordPress to try and get a better handle on how to disable all future comments on this topic. I feel the frustration you all are having with this site, it reduced me to tears today, so I am trying my best to get this sorted for you.
In the meantime, please DO NOT post anymore comments/replies to the current laser therapy thread. Instead, continue the discussion HERE in the laser therapy PART II topic thread. Thank you all in advance of your patience, I know this is frustrating and we’re trying our best. WordPress did some edits that has really thrown off our site – please don’t give up on using it, we value everyone’s contributions!
February 17, 2019 at 3:08 pm #16841Jack BlumParticipant
I posted this on Laser Therapy Blog and then found Part 2. So I am posting again.
My name is Jack Blum. In April of 2014, my VA primary Dr. heard crackling in my lungs and sent me for an xray. A month later he stated he thought I had IPF. Was sent to pulmonary at Phoenix VA Hospital. Had a lung biopsy in Oct 2014 and was verified by VA lab and Mayo Clinic that I had moderate to high levels of fibrosis. This all happened a month after the blowup about the Phoenix VA Hospital. I was told by the Chief of Staff of Pulmonology that I had Idiopathic Pulmonary Fibrosis and had 2 to 5 years left and to go enjoy the time I had left.
November 2014, Esbriet was approved by FDA, VA told me it would take them 3 years to get approval for use. I raised holy hexx, and it was sent to special committee, and thanks to their Chief of Staff, I am the first vet in Arizona to be approved for its use (on trial) in December 2014.
In January 2015, I went to a private Doctor for a second opinion. He tested my O2 levels, and prescribed me to 2 lpm. at rest and 4 lpm. during exercise. I have been on O2, 24 -7 ever since.
Through my Medicare Advantage Plan with Humana, I was accepted to be tested for lung transplant at St. Joseph Hospital in Phoenix. I was approved for lung transplant, but thanks to Esbriet and exercise and staying Positive, my PFT’s and Six Minute Walks have stayed relatively steady with slow decreases in lung function. I still do not need a lung transplant!
Last month while doing my treadmill (3 times a week for a mile), on my second lap, my pulse Ox dropped to low 70’s. I had to stop and rest for about a minute and the try to continue. This happened every time. I went into a state of depression, and knew when you get worse with IPF, you go down fast.
Pulmonary Fibrosis News sent me my weekly e-mail and it listed an article on Laser Therapy. I clicked on it and read the blog and found Dr. Halls website “ipflaserstudy.com” . I e-mailed with him, and he found a Class 4 laser about 100 miles away from me.
I have had only three treatments, and decided to try the treadmill after not being on it for 2 weeks. For three days in a row, my pulse Ox dropped on the second lap, but only to the low 80’s and did not have to stop, just slow down to 2mph for 1 minute, then able to finish the mile at 2.5mph!
The main reason for me telling this long drawn out story is to tell folks to not lose hope. Keep positive, do exercise, lose weight if overweight, stay progressive with your illness, and do not be afraid to try something if you think it will help. My transplant Doctors have not researched Laser, and could not comment. My VA Chief of Staff said go for it and keep him informed of my progress.
Thanks so much to the VA and their doctors for providing me with Esbriet, the Pulmonary Fibrosis News and their articles, and Dr. Hall for coming up with Laser Therapy for IPF.
Keep the faith,
June 4, 2022 at 10:41 pm #32296Kris manianParticipant
Very nice Jack! Do you have any updates?
I was hoping new updates in 2022. As I am planning to start this therapy. I am still searching for one that can do this in the Sanfran Bay Area.
June 7, 2022 at 3:42 pm #32304john stylesParticipant
To laser or not to laser, huge question. We are fortunate Andy hall brought the laser to everyone’s attention. I personally think its more complicated then the ones who say it does not work and the people say that it helps. I think a lot of it depends on when you start the laser treatments, probably the sooner the better. Andy says his disease has stopped progressing, he is fortunate, as for me my lung disease march’s on but at a reduced rate prior to starting laser. When I started laser I had less then half my capacity left. To be more accurate my dlco was down to 16.09 when my disease was discovered and then went down to 10.6, in 2 years the dlco being the amount of carbon monoxide we remove from our lungs. After I was at 10.6 dlco I started laser and it goes down about 5% a year. I have a aggressive form of lung disease “usual intestinalis pneumonia. I have a damaged liver so no transplant and no drugs for me. As to how much laser to do, Andy Hall is the person to ask and he is on this web site.
June 7, 2022 at 11:51 pm #32312Kris manianParticipant
Thanks John for sharing your experience.
My IPF is even more aggressive. I went from normal to requiring oxygen 24 hours in a matter of 8-9 months. I started OFEV 3 months ago and have not seen any improvement or stability. I am hoping the laser therapy may bring some stability.
Tomorrow is my first appointment for laser therapy. Let us see how it goes.
Do you have any suggestion about the protocol used. Because I saw in one of your messages some modifications.
Also this doctor uses Remy/Medray laser. May be Dr. Hall can advise if this equpment is as good as other lasers.
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