Pulmonary Fibrosis News Forums › Forums › Navigating Society › Pulmonary Fibrosis Awareness & Advocacy › Laser Therapy Part II
Tagged: alternative treatments, chronic illness, IPF, laser therapy, lung disease, PF
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Laser Therapy Part II
Charlene Marshall replied 5 years, 5 months ago 14 Members · 119 Replies
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Peter,
I noticed on your Feb 25 post you say “My osteopath tells me K Laser have now issued their own protocols for treatment of Pulmonary Fibrosis patients”. Could you please share with us what these protocols are. My wife just had her 4th K Laser treatment using guidelines set by Dr. Hall and all is going well and noticing some general improvement. I am trying to monitor progress by having her do a 6 min walk and measuring distance and oxysat at end of walk. She does this using oxygen at 3L. This is a very easy way for all of you to monitor progress and perhaps would be interesting if we all share results.
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Hi Leontis,
Thanks so much for connecting and welcome again to the PF forums! 🙂
Sounds like you’re being amazing support for your wife, glad she has you to help her through this disease. Steve tagged Peter in his reply above, also hoping he will share the protocol for using laser therapy to treat IPF. I’ll keep my eyes open for it, and ensure it gets to you when it is posted.
Take care,
Charlene. -
Hi Leontis and Steve
When I spoke to my osteopath previously about this he suggested there was little difference between Dr Hall’s and K laser’s protocols other than the use of pulsing. He appeared to suggest that Dr Hall’s K Laser may not have the pulsing facility. He offered this to me but Dr Hall appears to have done OK without it so I didn’t bother.
I Emailed him for the K Laser protocol and his reply was:
“The guidance that K Laser has given is to use acute thoracic setting once anteriorly and once posteriorly, this gives a total of about 4800 – 5100 joules at an average power of 10 watt using the intense super pulse (ISP) feature of the K Laser.”
I guess it’s interesting to know K laser’s thinking but I doubt whether one protocol is going to work fantastically better than any other version.
Peter
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Thanks @petergoodwin for getting back to us regarding this protocol inquiry! I am sure @steve-dragoo and @let666 will be grateful. I appreciate your sharing 🙂
Charlene.
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Here is the link to the newer Egyptian study published last year. http://www.ejbronchology.eg.net/article.asp?issn=1687-8426;year=2018;volume=12;issue=3;spage=317;epage=322;aulast=Sayed
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Thanks John! I know some folks were really curious to read this, so thanks for taking the time to share/post it 🙂
Charlene.
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To share an update with you, I had my pulmonary function test today, I had been declining all year with 4 pulmonary function tests done in last 12 months and each test showed decline. Today’s test showed no decline and showed improvement on all . good news. I have done 17 treatments, Last pulmonary function test done in November and started laser January 17, I am very pleased and happy . I lost my increased saturation’s outside two weeks ago, last week on Thursday my chiropractor changed the head on the laser from wide to narrow and the next day I lost my cough. My cough was real bad and now I hardly cough. What a wild adventure.
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Hi John,
I am so happy to hear this update, and that your PFTs showed an improvement – how incredible is that! I can’t imagine this is a coincidence, which means the laser therapy must really be effective for you. That is wonderful! I’m curious: did your doctor/the tech ask what you’ve been doing to suddenly see a stabilization or improvement? If the doctors see it in test results from their patients, my hope is that someday soon they’ll start talking about laser therapy as an option. The more people who see this, and hopefully give it a try, the better!
Thanks so much for sharing, I know others will draw a lot of hope from your story and update. Glad you’re doing so well. Keep up the amazing work! 🙂
Charlene.
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When I started laser Jan 17 I was doing 3 times a week and then my saturation’s increased when doing outside walking to the point I did not need supplemental oxygen and I went to two times a week doing laser. Two weeks ago I developed a bad cough, worse then normal and was trying honey, ginger, etc, but nothing gave me continued relief I also lost the increased saturation’s when walking to where I had to use my supplemental oxygen to do a mile and half walk, my saturation’s stayed the same when sitting or walking 100 feet.. When I discussed this with my chiropractor last Thursday he changed the head of the laser from wide to narrow, the next day my cough is gone, I still get a one cough now and then but no out of control cough, 99% better. I started back at 3 times a week this week doing laser. What Andy Hall has said all along and what other people have reported is that the laser appears to stop the deterioration of the lungs. My lung breathing test was done by the same tech who did the last two tests, I had four tests last year and all values ( FVC, FEV1, FEF25-75, PEF ) all had deteriorated every visit last year, all these figures increased on this test done March 7. I was hoping for stable results but was very pleased with the increase, at least no more deterioration. Time will tell where we go from here. This is especially important for me because I have liver disease fro cured Hep C three years ago, this means I do not qualify for a lung transplant without doing a liver transplant , (my liver is working fine) and can not take the drugs available.
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Hi John,
Thanks so much for providing that clarification, as I was curious to what you meant when you said lost the outside saturations as well. It sounds like this was due to your cold/cough, and hopefully now that the cough is gone (thanks to the change in your laser protocol!) it’ll improve again. I can’t imagine the feeling of seeing your PFTs not only being stable but improving, that is wonderful news! Will you try the walk outside again soon to see if the saturations outside hold, not requiring your supplemental oxygen again? Let us know when you’ve tried, but don’t push yourself too much as you don’t want your cold/cough to return. You all are amazing, being willing to share your success with laser here! The more success stories we have, the better 🙂
Talk to you soon,
Charlene.
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Hi Steve, I use Alacin which is the extract in garlic that gives the benefits but only stronger without the taste and smell, I take it every day, costs $15 a bottle that lasts 3 months. I have not been sick since starting taking alacin Jan 2018. Sounds like your mixture is working, may try it. I use honey and ginger tea.
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I just finished my first month of Laser therapy at 3 times a week. I definitely feel better. After 1st month, my resting pulse ox has went from 94 – and H.R. in high 70’s to HR to 97 – and 68 HR.
I use the treadmill 3 times a week and start at 2.7 mph and finish at 2.5 mph. Prior to treatments, I would have to stop after 1-1/2 laps as pulse ox was in lower 70’s, and rest for 2 minutes before finishing at 2.5 mph. Now I slow down to 2 mph for 1/2 lap and back up to 2.5 mph. No more stopping to rest!
After 1st week of laser, at 1-1/2 laps, P.O. was at 83 and H.R. at 130. Now P.O. at 83, but H.R. is at 113.
Now after 1 month at finish of mile, P.O. still at 84, but H.R. 110 (down 3 points).
These changes, although maybe small, are all improvements, instead of getting worse.
I am looking forward to 2nd month @ 2 treatments per week. No function tests till June, but will keep you posted. – Jack
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@caneelbay!
Hey John – you can add some fresh red onion too and rotate your different concoctions even go 3X daily when sick.
I had a laser treatment today and shared your previous post with him. He is onboard and would like to know your doctor’s name. Is your doc in FL? Thanks – Steve
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@jackblum
Hey Jack – awesome results. I am experiencing similar results and about to start week two of 3X treatments. Initially, we started with the wrong protocol because some K-lasers are preset w specific programs w no manual option. Once I asked about the protocol and went to Dr. Hall as was good.
Steve.
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I am so glad they were willing and able to adjust the protocol for you Steve, and that you’re happy with the laser treatments now. I know this was really important for you to try! 🙂
Enjoy your day, and thanks as always for being so supportive and encouraging to all of our members!
Charlene.
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@caneelbay1,
Hey John – you can add some fresh red onion too and rotate your different concoctions even go 3X daily when sick. I had a laser treatment today and shared your previous post with him. He is onboard and would like to know your doctor’s name. Is your doc in FL? Thanks – Steve -
@caneelbay1
Hi John – The Philippines we use a strong lemon that looks like a small lime called calamansi (or calamondin) – I like it a lot better than lemon/lime and it is more powerful. Glad you know about the allicin in garlic.
Kindly send your doctor’s name and contact info so I can share it with mine. This could lead to some interesting discoveries. Maybe Andy would be interested in starting a doctor’s panel – that could definitely help get the word out. I am sending my doc marketing idea that will help him get more patients over time and starting a panel could really ramp up that benefit to more w IPF, ILD etc. Thanks – Steve -
Hi Jack,
This is wonderful news, thank you so much for sharing your update with us after the first full month of laser. I am so hopeful that this seems to be working well for so many folks, and your numbers definitely show an improvement. You’re right – any small improvement is a “win” in my books, so I am thrilled for you.
Obviously it is important for our saturations to improve, but even the HR numbers you showed declined and there is something to be said about our hearts not working too hard despite having poor lungs. That is great news!
Kudos to you for also using the treadmill so regularly. While I know it is important, it is not always an easy task so good for you! Looking forward to hearing about your PFTs in June and hope the second month of laser therapy go well for you.
Cheers,
Charlene. -
@jackblum
Jack,
I do not understand what you meant by results you posted on March 8 that say below. Can you please explain in more simple terms what was your oxysat and hear rate before treatments and after the first month.
“I just finished my first month of Laser therapy at 3 times a week. I definitely feel better. After 1st month, my resting pulse ox has went from 94 – and H.R. in high 70’s to HR to 97 – and 68 HR.”
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I feel like were on wagon train live. We have Steve, Jack and myself doing laser with Andy Hall as the guide. I guess you can tell I like westerns but this is real pioneering, setting out on our own to get treatment. I hope everyone who tries laser posts results, good or bad so we all get a good grasp of the benefits. Some increase in saturation and stable lung function tests will be the goal.
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Completely agree with you both @caneelbay1 and @steve-dragoo… pioneers for sure! So many folks in addition to you both, and Jack that are finding the laser therapy beneficial. I can think of about 6 members who have written to us and explained the benefits for this type of therapy, even small gains are important to note at this point. Now, I wonder if it is a matter of figuring out how to compile this information. I wonder if @drandyhall has an idea of what might be most helpful in terms of noting patient success stories/experiences with laser? I like your idea of a forum specific to this too Steve, keep me posted on the idea/evolution of that and how I might be able to help when it comes to modifying the site to give us a good platform for this. I’ll run it by Bionews first, but can’t imagine this being an issue if we don’t endorse anything but instead just share experiences with others!
You’re both amazing, thanks for the dedication to this site and sharing the benefits of laser with those who might need it. Take good care and let me know how I can be of most help as your ideas continue to evolve…
Charlene.
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Hi Charlene and everyone,
Yes, we need to document all the changes patients are experiencing with laser therapy. This is why we are doing a study on laser for lung conditions. But the only way it will really happen is if patients get involved with the study. Otherwise, all we really have is scattered comments of how it helped (or not). So, we are enrolling patients in the study and will have ‘baselines’ measured on each patient, and keep track of the changes using laser therapy using subsequent PFT’s and CT scans. It really is a huge undertaking, but I’m up for it.
We can’t wait 10-15 years for someone else like the NIH to do this. At this time, they have no interest. In the meantime thousands of patients are dying. So, what’s in it for the patient to get involved? Number one is that they may find like so many others including myself that laser therapy can be very beneficial for them. They can also know that they will be helping other lung disease patients both present and future of an alternative treatment that may improve the quality of life and perhaps prolong the life of those patients. I believe thats HUGE! We are all stuck with these diseases whether we like it or not, and for the minimal amount of effort sending copies of the PFT and CT reports this can be a really big deal. All the patients that get involved truly are pioneers, and eventually the little bit of effort by them could help alleviate tremendous suffering by lung patients. Pesonally, I feel a moral responsibility to be involved with a study.
I wish the study was a full-blown Clinical Trial, but it’s not. Those cost a huge amount of money, money that I don’t have. This study is a ‘preliminary’ study to help convince the NIH or others to finally do a large, formal Clinical Trial depending on results. But I realized a couple years ago, with all the reports of patients that improved with laser for their IPF/lung fibrosis that this just CAN’T be co-incidence.
I would love to have a forum with all the doctors also. I am daily on the phone or email with doctors. The cool thing is that with them having understanding of what laser therapy does, they are excited about the prospects. One of the comments I hear from them all the time is “I see no reason why laser therapy wouldn’t work, why hasn’t anyone thought of this before?” There is a lot of excitement with the treating doctors, and it makes me feel good that so many want to be involved and are caring and compassionate.
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Hi Dr. Hall,
Nice to hear from you, thanks for giving us some of your precious time this morning as I know you’ve been very busy with people inquiring about laser from all over the world!
Thank you for the reminder about the study for laser on patients with IPF, I’d forgotten that this initiative was already underway and such a great way to determine the data we need to compile success stories. I agree, it is really important for people to give involved regarding this, and they can from anywhere in the world, right Andy? Its just a matter of getting the data to you, or do they have to be enrolled from a location geographically close to you? I agree with you, that the benefits just can’t be co-incidental! Starting somewhere is important, especially for bigger agencies to pick it up and complete full clinical trials, like the NIH. We’re so thankful you’re willing to identify that ‘somewhere’ by starting this study 🙂
I know Steve is still thinking about the best way to encourage physicians to use this site, and then I can create the platform for it if we decide to go ahead. It would be cool to have everyone in the same area discussing protocols, etc. and hopefully save you a bit of time! I know lots of people have been connecting with you, so maybe a forum where information could be posted might lessen the workload on you too. Just a thought!
Enjoy your Saturday!
Charlene. -
@drandyhall – Well said, Andy. As a marketer, I see ways to really increase exposure and bring in new eyes and minds. Dr. Harrington should be involved as this will eventually lead to more sales of the K-laser. So I will work on some ideas for this and send them to Charlene and you and anyone else that has a doctor they want to bring in and how we might go about that as patients w the lung disease. If you have a list of doctors and want to share it with me privately we can go over what it might look like to get them involved. Charelene should be kept in the loop too… – Steve
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Hi Steve,
I had not given any thought to a group dedicated to doctors. But sounds like an awesome idea. I don’t have a ‘list of doctors’ but I do have lots of contacts of the doctors that have reached out to me. And there’s a bunch! I would love some help getting this done. I have to tell you though, that right now I seem to have a full plate. Sometimes I don’t feel like I can keep up, I’m doing a juggling act but I don’t want to drop the ball…..
I’ll work on a list though……
Andy
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@Charlene-Marshall – exactly my thought too. One general location for posted protocols, maybe FAQ’s and discussion board – save Andy and other doctors a lot of time… Steve
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@drandyhall
Hey Andy – I understand juggling and hope to prioritize someday soon – kidding I do that a lot and learned I had to in order to survive running 3 corporations simultaneously and a 4-state chapter of American Telemarketing Association back in the day.
The panel/forum idea will take a while to formulate but if you have a list or someone who can put it on an excel spreadsheet, I can post it on Google Docs and give you and Charlene access to see progress on it once we decide what to do.
Thank you for being the one who has started this by your brave decision to self treat a few years ago. What I really enjoyed about starting a company was watching it take on a life of its own. Talk soon… – Steve
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Thanks so much for being so invested in helping us with this @steve-dragoo! I know it’ll take some time to formulate a plan, and then decide how best to move forward, keeping the work Dr. Hall has done in mind too. I am open to learning how we might be able to use the forums as a platform to help with this task, but whatever is easiest for everyone.
This topic thread is now also getting a bit too big for my liking. I really worry when topic threads get so large, as it takes time for people to sift through and find replies. For folks who aren’t too familiar with the site, I worry that they’ll get tired of trying to track replies. Maybe we could continue dialogue about this through a message thread with @drandyhall for now? I may have to start a new topic for Laser Therapy Part III 🙂
Let me know your thoughts, and I’m just about to spend time catching up on the dialogue back and forth between you two, to see if there is anything else I can do to help at the moment or wait for further ideas/thoughts from you both…
Cheers,
Charlene. -
Hi again Charlene,
Yes, it’s amazing that patients and doctors alike are contacting me from everywhere. All over Europe, the UK, Africa, S. America, Australia, Canada to name a few. I had another conversation this morning with a gentlman from the Netherlands, he/they are considering a traveling laser therapy provider for lung patients and has lots of questions regarding the ‘perfect laser and perfect dose’. And like the Disney song, “it’s a small world after all”, no one is excluded from the study, there are no geographical boundaries. These diseases affect people all over the globe.
I wanted to tell you about the meeting yesterday. I drove the nearly 3 hours to Sacramento and met with Dr McGinnis and spent a good part of the day with him. It’s funny that many years ago I intoduced him to laser therapy. He went on to become one of the top Class IV experts especially in regards to modulation/frequencies. He has credentialled doctors all over the western US and Canada. He is consulted by doctors the world over, and he ‘beta tests’ new lasers going on the market by K-laser, in fact had one at his office for a month. So cool to check it out. Very awesome piece of equipment. We had long discussions about the frequencies we need specifically for IPF/lung fibrosis. Those frequencies have all gone into one of his lasers. We are not done, as we need more specific frequencies for limiting fibroblast formation. But frequencies for inflammation, alveolar healing, microcirculation, stabilization of cell membrane, oxygenation, lymphatic stimulation etc are already into the laser. We are getting close, but not quite there yet. The other 2 top Class IV experts are not physically near by, and we do have some logistic issues. ,
Dr McGinnis can relate to deadly diseases. Several years ago he was diagnosed with throat cancer and has been looked in the eye by his oncologist and said that he may not survive. However he is doing well though he speaks with an artificial voicebox installed in his throat. But he continues to work. He is passionate about laser therapy and is a very compassionate doctor. During our discussions he said “Andy, you do know that what we are doing today can very well prolong tens of thousands of lives later”. I said, yeah, I agree….
Dr McGinnis used the updated but ‘not completed’ laser on me. I have to say that for the first time after a laser treatment, my chest felt ‘light’ and I had no cough for a couple hours. Now, could have been my imagination or wishful thinking, but I don’t think so. We are very close to having a final product, but we are just not there yet. I for one can’t wait!
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@Charlene-Marshall
Hi Charlene – Yes Andy should be a major part of this panel. If it is to work it will take the open efforts of all having success and sharing their doctor’s contact information. I can eventually have a simple sharing mechanism for these new doctors and be an initial contact. This started with John saying pioneer and my doctor wanting to talk to John’s doctor @caneelbay1. This concept can grow legs far beyond anything we have thought of here so far. – Steve
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@drandyhall – great news Andy. It would be good to share the protocol specifics as my doctor is wanting more info and wants to connect with other doctors here and elsewhere that are having success with a more specific laser treatment. I would like so much to hear about it too because I see a grassroots possibility and panel here and of course I want the most accurate protocols available. We are at the right place at the right time… Steve
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Yeah Steve,
We are soooooo close to being done. Has taken quite a while, but it’s important that it be done right. When we have a consensus of all 4 of us, we will release the protocol, get the word out, etc.
Also, when the protocols are released, we discussed explaining the rationale for each frequency. I think you will be impressed. It will also be a great thing for all the treating doctors to know exactly why these particular frequencies are being used and the importance of each one.
Andy
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Sounds absolutely amazing Dr. Hall, what wonderful work you’re doing on behalf of so many now and as Dr. McGinnis said, for the tens and thousands of lives in the future…. wonderful! So glad you have networked with so many folks who are interested in learning more about laser, especially in their areas all over the world. So exciting!
I am getting a little lost @steve-dragoo on what we’re trying to do/organize, simply because this thread is getting too big. Do you mind sending me a DM/email about it, so I can get caught up to speed? This forum alone had 16 replies to it today and with the lack of organization due to the WP updates (and probably due to how tired I am too ;)) I am having a bit of a hard time catching up. I am really eager to hear though, as I see you and @drandyhall have been having some great discussions!
Cheers,
Charlene.
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@budhenry – Posting on this board can be tricky. If you type in Word or other and cut and paste it seems to post a lot of the formatting characters in your post.
No potentially fatal disease is easy for that person or family and clinical trials by their nature are unproven. That’s one of the reasons I like this forum so much. There are lots of good ideas and deeply expressed thoughts and I know here, as in other places there are the silent ones who benefit from just reading not necessarily commenting. To them, I hope our conversations bring some peace and maybe even hope to know they are not alone.
You miss the point, there are a lot of unapproved methodologies that help heal better than chemo/radiation (these don’t heal they generally destroy- possible exceptions noted) without the damage but they are not allowed in USA – at least not yet. It will typically take a grassroots lawsuit to allow them and that is a long and arduous process. So if the K-laser helps, then people want information. If the K-laser doesn’t work people want information. If we are at the beginning of such an event like the journey “The Truth about Cancer” has been on the past several years, then people will want information, not suppression or vague criticism of the unknown – that sounds like it is based in fear and ends in a quagmire too easily. You should do some international research on different color spectrum usage of lasers. It is at least provocative.
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I have come to beleive there are different types of people in this world. Me and my wife when seeing someone ask for food on the side of the road want to help but do not want to contribute to alcoholism or drug addiction so we give the people who are on the side of the road a bag with a fast food gift card and new pair of socks and water. Now we have a new member ” Bud Henry” I think he would run these people over if given the chance. I will pray he has changed. The whole idea of posting about laser is to here from other people that may try laser so we can learn of the long term effects. Bud is only going to be negative and tell us why it will not work. Maybe he has a issues. Bud drove the people on different website to create a facebook closed site for laser therapy and the site is growing daily.
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Hi John,
Thanks for sharing, and I didn’t know about the social media platform that Bud is part of. I do want our site to remain welcoming to everyone, and encourage respectful dialogue but now that I am aware of other social media issues, I will be monitoring his activity very closely. I agree with you regarding all of us just sharing information about laser in the hopes that it will be effective and informative in making choices about care for patients who have IPF. You have done a good thing here, by opening up the dialogue, please don’t think otherwise 🙂
Talk to you soon – I’m just about to reply to your DMs.
Charlene.
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Hi Leontis Teryazos,
I wanted to answer your question about stats prior to Laser treatment. My first post on Laser 2 was on February 17th and explains my oncoming of IPF a little. The month before I started Laser therapy (January),
all of a sudden the bottom started to drop out on my pulse ox and heart rate. It had been steady for over a year of treadmill for a mile at 2.7 mph. In January, after 1-1/2 laps, my pulse ox was dropping to 72 or 73 and my heart rate was going up to over 130. I would have to stop for over 2 minutes before I felt up to finishing at 2 to 2.4 mph.
I got totally depressed because just walking out to my shop, about 100 feet from house, my pulse ox would drop to 75 and heart rate went up. I quit treadmill all together for about 2 weeks. Felt the bottom was dropping out and lung transplant was just around the corner. I have been approved for lung transplant, but DO NOT wish to have one if can be avoided.
February 2nd, I had my first laser treatment. After 1 month of 3 times a week treatments, my treadmill results are as follows.
Pulse ox 83 after 1-1/2 laps and heart rate 113 at 2.7 mph. Slowed down treadmill to 2 mph for 1/2 a lap, then finish the mile at 2.5 mph. At the end my pulse ox is 86 and heart rate 113.
I hope I explained that to where folks understand. If you pulse ox ever drops into low 70’s and heart rate up to 130’s with shortness of breath, it is not a pleasant experience.
If you have any more questions, I will be happy to answer them.
Jack Blum
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Hi Jack,
Thank you so much for your thorough reply to Leonitis. I know it will be helpful, and your post was very informative for me as well – I am thrilled to hear of the gains you’re making with laser therapy, that is wonderful news. You must be happy as well? Any gains, big or small, are just that… gains and are certainly welcome 🙂
So glad you have been able to re-initiate your time on the treadmill again, and are seeing this improvement. I’ll keep my fingers crossed that the trend continues upwards! Wishing you nothing but the very best, and thanks again for writing…
Charlene.
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Hello everyone…..before starting laser theraly, my oxygen level was at 94, after 7 treatments with laser my oxygen is at 97 and 98. I consider that an improvement . Also, I’m not so out of breath and I also feel better. Placebo effect? I don’t think so. I have not gone to a pulmonologist to do a lung test, still waiting on that, but I FEEL BETTER , so, Mr. Budrenry, put that in your pipe and smoke it. My gosh, this budhenry guy is as negative as it gets, he’s the reason I left the inspire forums and came over here, and now here he is spreading his poison here as well, unbelievable, lol.
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Hi Kristina,
Thanks so much for writing to us and sharing some of your experiences with laser therapy. I am thrilled to hear of your improvement, any gains are a bonus for us, aren’t they? I would also consider an 02 increased from 94 to 97/98 an improvement, this is wonderful for you! I am really glad you simply feel better, that is also just as important … no one is claiming this treatment is going to cure our disease, but it is important that we feel better. Really glad you shared this, thank you.
I have removed Bud from our site. There is a few different folks who told me that he is the same individual that caused havoc in other social media platforms, making people leave or feel uncomfortable. I don’t tolerate disrespect, and we tried to encourage him to be kind on the site but he wasn’t so I’ve removed him. Glad you’ve found this community, feel free to write anytime. You are always welcome here 🙂
Charlene.
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Kristina,
We are THRILLED for you!!! Feels great to be going in the right direction doesn’t it!
Don’t worry about budhenry, he has issues, but it is too bad he basically ‘killed’ the Inspire site. Very sad…
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Couldn’t have said it better myself @drandyhall. I’ve removed Mr. Bud Henry from our site, after learning how much difficulty he caused in other social media/online platforms, we do not need that here. I’ve captured his IP address as well in case he chooses to resign up under an alias. I’ll tolerate a lot of things, but disrespect is not something I am willing to have on our site so he has been removed. Thank you as always for your kind words 🙂
So glad Kristina is feeling the benefits of laser therapy as well.
warm regards,
Charlene.
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Thanks so much for your thorough reply, Dr. Hall! As always, your posts are very genuine and informative, I was glad to read your reply to Barry as well. Sometimes we have hold this really good thing that is seemingly beneficial for so many, that we don’t want to accept that it just may not work for some people but you’re right, that is the reality. Hopefully it doesn’t occur, but it is very wise to keep this a possibility in our minds so thank you for reminding folks of this. So appreciate all you do for us, and the dedication you continue to offer patients all over the world, we’re very grateful.
Keep up the amazing work!
Charlene. -
Hi @let666,
Thanks for this post, and connecting with Dr. Hall.
I had to edit your post significantly due to formatting issues, please don’t copy and paste in future if you can as the format gets lost entirely and I have to edit the post. I don’t know if I even captured what you were trying to say to Dr. Hall, as the formatting took so long to work through … truly sorry in advance if I cut off information in your post.
Thanks,
Charlene. -
Hi Barry!
I did some checking to see if I could locate the Egyptian study on COPD. Weird it just disappeared. However, while doing a new search for it I did come accross another Egyptian study that is actually even more impressive. Realize that the Egyptian study on COPD had to do with laser acupuncture and not directly using laser into the lungs, impressive though as all the patients improved using the 6 minute walk test. The other study I found again was about laser acupuncture for a variety of chronic lung diseases, including interstitial lung disease, COPD, asthma, and bronhiectasis. The name of the study is: Role of laser acupunture in chroinc respiratory diseases. Again, the results for all of these chronic lung diseases had significant improvement compared to a control group. This study can be found at:
https://doi.org/10.1016/j.ejcdt.2014.06.012
So glad you are getting started with laser therapy Barry!
Andy
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@caneelbay1
John – that’s great news! I have had several treatments but initially, we were using the wrong protocol. Looking forward to similar results.
What is “I lost my increased saturation’s outside two weeks ago”?
Keep it up!
Thanks – Steve
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@caneelbay1
Hey John – thanks for the update, very valuable material.
When I get a cold I take 2x daily lemon/lime w a little water smashed garlic rested for 15 minutes and either blend or chop garlic and put in the juice. Also, add a little real honey. This is called Russian penicillin and it is effective in reducing the strength and length of the cold. Actually, have lemon/lime w honey every morning and a fresh smashed rested garlic clove a couple of times a week. Until 2 weeks ago, I have not had a cold in 3 or 4 years and it was not too bad and lasted about 5 days. Serrapeptase helped too. – Steve
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@caneelbay1
Hi John – yes pioneers. Was thinking about that earlier today and realized we have a massive opportunity.
We need to start a panel with Andy your doctor, mine and Dr. Harrington to explore ways to get the word out to the public and western medicine – in addition to the abstract Andy is working. I am helping my doctor get more exposure with a variety of suggestions. Since I have been in marketing and sales 36 years there is a lot I hope to share with the panel. This will be a different approach to reach more people affected. So I’ll work on this a while.
But in the meantime send me your doctor’s contact info, it starts there between him/her and my doctor. Steve
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Dr. Hall,
Is laser acupuncture something we should consider in addition to laser therapy?
I took a look at the Egyptian study link results you mention and see in the 6 MWT they were only covering a distance of 30 meters before the treatment. Is that correct as sounds extremely low for 6 min?
My wife, who has severe IPF was doing 240 meters before starting treatments. By the way she is up to 340 meters after 7 treatments, although all this is with oxygen.
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@drandyhall @Charlene-Marshall Hi Charlene – adding you to this post. Maybe you will us to go offline with this conversation?
Hi Andy – that sounds really good. I know many new to the K-laser idea will want that great info as mine is asking questions I don’t know how to answer. So he does want to talk to John’s doctor and maybe others.
So I will create an introduction letter to doctors and then a panel/forum intro letter for Charlene and you to advise me, then we need a doctor’s list for me to start outreach to them. We should concentrate on K-laser users first. Include veterinarians? I would use one if I had not been accepted by Dr. Hundley.
Add your thoughts too… Thanks – Steve
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@Charlene-Marshall
Hi Charlene – thank you for keeping these forums open for discussion. I know somewhere this newsletter has a link to all known clinical trials around the world and many times these trials start with induced IPF in lab mice/rats. It would be interesting if we can get to that stage with a class IV laser. Of course it is useful to have scientifically proven data at our fingertips and there is a lot of research in countries outside of the USA regards lasers and other useful medical solutions where big pharma is not pulling as many financial strings.
I can’t imagine how some lab or other group came to the conclusion that wiping out the immune system and only killing the daughter cells in cancer could be called a success. Maybe that’s why it’s called remision not cure.
So here’s to the poison of out choice. Cheers! Mine is remaining positive and helpful and curious and investigative as long as I can.
Thank you and all who contribute – good, bad, or indifferent. – Steve
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Hi Leontis,
I didn’t see in the study of only covering 30 meters before the 6 mwt. I may have missed it somewhere. I did see where there was no warm-up before the test. Maybe we aren’t looking at the same Egyptian study. The link I recently posted was for the study “Role of laser acupuncture in chronic respiratory diseases”. Published in 2014. The good thing with this study is that it wasn’t just for COPD in the other study that John referred us to, but for Asthma, COPD, bronchiectasis, and ILD (interstitial lung disease). It had positive outcomes for all the patients in the study.
Yeah, seems funny that no one I know has started laser acupuncture for themselves after looking at the results of the study. But it certainly would make sense to do so considering the outcomes. I have always said that I don’t care what it is that you do, if it helps…. awesome! I don’t care if it’s laser therapy, drug therapy, Chinese herbs, Serrapeptase, doesn’t matter. We are dealing with deadly diseases and we will take whatever we can to get better or just maintain our health. As far as the study that we are doing for laser for IPF/lung fibrosis, just like the patients on Ofev or Esbriet, laser acupuncture could be factored in as well.
So glad Betty is walking 100 meters more than she was after only 7 laser treatments. Fantastic!
Andy
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Hi @budhenry,
Welcome again to the PF forums, and thank you for contributing the information below regarding laser therapy. You’re right, everyone is entitled to pursue options that they think might be effective for them and ultimately, it is their responsibility to investigate any potential scam out there targeting patients with IPF.
It sounds like you’ve had a successful transplant, which I am thrilled for you and so glad you had this option. Some folks are not given this chance, and are seeking to find other options to manage their disease (not cure it), even if that means just lessening some of their symptoms. Please be respectful of a difference of opinion, and be cautious about your beliefs when posting about a topic on the forums. No one is claiming that this is FDA approved, you’re right, it isn’t but if someone finds it effective and they’re willing to pay for the treatment to see if it works, then they are entitled to do that barring any/all potential risks. Also, all FDA approved trials do have to start somewhere, perhaps this is a grassroots approach to getting enough data (evidence-based or experiential) for a larger clinic trial to be done on laser therapy for future FDA approval? I certainly don’t have the answers, and am not interested in arguing but I do need to ask that you, and everyone else, respect what others try in their desperation to live with this disease as long as possible. Sadly, we all know there is no cure.
This platform seeks to support discussions about options for managing the disease, and simply learning to cope with it as well. No one is asking for Go Fund Me donations to help pay for their laser therapy; that behaviour would not be tolerated on the forums and shut down very quickly. As a result, I have removed the links in your post about scammers collecting money for their treatment, it is irrelevant here and not taking place on this forum. Please note that I also posted the exact same link you did regarding the worldwide clinical trials taking place for IPF, from the government site you also linked. We encourage folks to look there for current studies taking place, or that are in the clinical trial phase. Dr. Hall has stated that his collection of data pertaining to laser therapy is not for a clinical trial, it is mere data collection at this point to help with a study he is working on.
Thank you for sharing your thoughts, they are valued but please be mindful that others are entitled to seek out whatever options they see fit to help them manage their disease.
Warm regards,
Charlene. -
@Charlene-Marshall
Hi friend – I think I will email you any more ideas regarding the panel/forum and just up to this point there is no form yet just ideas to help create the form (panel/forum). So any ideas keep them coming.
Just like to add that a business partner and I once created a client’s tremendous and valuable house file by setting up 2 whiteboards. The first day all of us (about 20or so) threw anything at the first board no matter how ridiculous it seemed. Day 2 we took those ideas and created 5 – 10 top points. From these 2 boards the group “Teen Suicide Prevention” was created and in 18 months we had over 90,000 donors nationwide – long before the internet in the mid-eighties.
We are at the first whiteboard stage and all ideas are welcome. – Steve
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@budhenry
Circuitous logic is what most skeptics use – well – because that’s all the thingies they’ve got. haha haha, I also once heard an argument that some people were considered brainless because no one had ever seen their brain and no one could prove otherwise. But I see your point. No, I’m not digging at you (well maybe a little) or trying to insult your intelligence.
Of course, IPF being as deadly as is it people will look for alternatives since western medicine is entrapped by big pharma and they, as we all know, only want to create customers. Some would probably say similar comments about the group “The Truth about Cancer” because after all the CPA that runs it couldn’t possibly know anything about medicine and since he lost both of his parents to cancer, his grief has blinded him to reality. But wait – thousands have been saved – maybe it was the placebo effect.
Places like the Philippines cannot afford medicine so they rely on old herbal remedies (Chinese and other) that have proven reliable for thousands of years. Did they start that way or was there a dark and sinister personality initially at work that fortuitously was healed by trying poisoned ideology that wasn’t the placebo effect? I don’t know it was before my time and that means I never say their brain and couldn’t prove they had one.
Me? – I learned something long ago – reality is often stranger than fiction and when you or I start our circuitous logic from the wrong perspective, we almost always end at the wrong conclusion. But who could blame us? After all, we’re just dying from a horrible disease and should accept that there is no help for us or so it seems.
Steve
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Hi Steve,
My pleasure, I do want the forums to remain a positive platform for everyone to share their thoughts on relevant topics pertaining to IPF, regardless of being (as you say): good, bad or indifferent. However, it must be done in respect of others, which you always are. The scientific data and evidence-based literature does have to start somewhere, as that collection takes time and people to voice how something impacted them. Maybe the “voices” Dr. Hall is collecting can be that start, who knows…
Everyone is certainly entitled to their opinion, and trying out something that they suspect might work for them. Really, what other options do we have? Thanks for sharing, as always 🙂
Charlene.
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That sounds great Steve, thanks for doing that! It might be a little easier for me to track via email than the forum thread, although I am glad enough folks are contributing to make part II of this discussion just as large. Really appreciate your efforts here, and please let me know if there is anything I can do to help in the meantime.
Charlene.
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Hi @budhenry,
Thanks for your reply.
You are certainly welcome to your opinion on laser therapy being ineffective, but again I ask: you must be kind and respectful in your approach to discussing this topic, or your profile will be deleted. Unless you are a licensed and practicing medical doctor, your opinion countering the effects of laser do not trump those experiencing some gains with it. Nor, is it your place to tell folks it doesn’t work. We’re all just doing our best here in an effort to slowdown an otherwise deadly disease. No one is asking for money, no one is stating that laser therapy is statistically significant in improving or stopping fibrotic growth. We’re all just doing our best, and your comments, while welcomed because they are your opinions, are not kind and borderline disrespectful to others who are simply trying something they hope might help them.If you cannot change your approach to posting on this site (you don’t have to agree, we can be indifferent in our opinions), your profile will be removed.
Thanks,
Charlene. -
Deleted User
Deleted UserMarch 11, 2019 at 2:08 pmHi Dr. Hall,
I just finished my 3rd laser treatment. The doctor was reluctant to start me out at 5400 Jules so I think it was about 4500 or so. After today’s treatment he will reset the laser to 5400. Just wondering if there’s any time frame that I could tell if the treatments are working.
Thanks
BARRY
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Hi Barry,
So glad to see you have gotten started. It seems as though some patients see some results in as little as 2 or 3 treatments, others it takes much longer. I think that chronicity has a lot to do with it. There is a difference between ‘feeling improved’ and seeing objective changes as with monitoring your O2 levels. I hear often that the patient feels more stamina, less coughing, and the like. But often, like Jack Blum just posted, that he is measurably better on the treadmill while monitoring his O2 levels and pulse rate.
Know that laser therapy is cumulative, the more you do the better you do. This is not only true of lung issues but for musculoskeletal issues as well. And the same can be said for say a very chronic knee problem, it will take longer than a more acute type problem, and I believe from observation that more late stage lung disease will often take longer to notice subjective changes, though even late stage patients seem to have a least a little improvement with oxygenation fairly quickly. So, I would monitor your O2 levels at rest and see what happens.
One of my big concerns is that even though we have heard from so many patients with results ranging from slight to dramatic, even with muculoskeletal conditions, we have seen so much success that success is just expected. We still don’t understand why that is that a small minority of patients don’t respond. Haven’t really seen it yet, but the same may be true for some lung patients, we now expect success but we just may have a failure pop up. The problem with that of course is that these lung conditions are deadly, but you can still live with ‘tennis elbow’ or carpal tunnel syndrome. I dread the time when someone really just doesn’t get better or arrest progression, and it could very well happen as with musculoskeletal conditions.
Andy
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Dr. Hall,
The study link for “Role of laser acupunture in chronic respiratory diseases” was in your March 4 post and was below. I read study and copied and pasted results for the group that took the laser treatments and as you can see it says baseline 6 MWD was 30.94 meters. This seems incredibly low distance as from research I have done people with late stage lung problems usually do in 150/250 meter range. Would appreciate if you can let me know what you think….
BMI, spirometric data and 6 MWD for the study group baseline and after 10 days of laser therapy.
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