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I have usual intestinal pneumonia, diagnosed October 2017. When I was diagnosed I had 55% lung function and as of November 2018 I was down to 35%. I am on predisone 10 mg daily and will be tapering to try to get to o mg daily. I use portable oxygen. Yesterday when I did my 1 mile walk I started out with a setting of 5 on my pulse concentrator and usually have to stop at least 6 times to get my oxygen back up from low 80 or high 70 to 90. Not going more then 100 feet I noticed I was at 97! I turned it down to three within another 100 ft and was still at 97! I then removed my oxygen and completed my walk not going below 90. Last week I started treatment with a class 4 cold laser at my chiropractors office at 10 watts doing 4 minutes on front and 4 minutes on back for 4800 joules. I had Found Doctor Halls article on Pulmonary fibrosis he had used the laser on himself and now 4 years later had no new fibrosis and actually improved on his pulmonary function tests. I had found the Egyptian laser study for copd and results were positive. I do not quallify for drugs as I have cersois and do not qualify for transplant. I think Doctor Hall may be a hero for trying the laser on himself, Dr Hall is in Sonora California and partially retired. Do not expect any study done on this as there is no drug money and do not expect a pulminologist to approve as it is not accepted treatment. I am hoping and now have a positive attitude.
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Have you only had one laser treatment? Do all chiropractors use cold lasers in their therapy? This is Lynn (Dogwood)
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Hi all,
I just met with a chiropractor who is willing to give me the laser treatments. I gave him the link to the study done at Cairo University and came home to look at it more closely and it seems that the link has been removed. Would anyone know why this was done. Perhaps because too much time has elapsed? No too versed in these things,so I wonder if anybody here would know.
Thanks,
Barry
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John Styles, I am interested in the article by Dr. Hall about cold laser. May I ask where you live and who performed your therapy?
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@lo3241 Hi Barry – Dr. Hall will contact or you have your chiropractor contact him for the protocol. Dr. Hall has a brief page he has started for this study and the link is here: https://ipflaserstudy.com/. There are other things you can do to help IPF be less of an impact on your life but the laser is probably tops if the right protocol is used.
Take Care – Steve
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Hi John,
I am a chiropractor and use class IV laser in my office. I am so happy to hear that you are getting this treatment. My father passed away on the 20th of this month after battling PF for 6 years. I wanted to use it on him, but he simply lived too far away. I have no reason to believe that it will not offer you some benefit. What that will be, I do not know, but light therapy is powerful and NOT hogwash. I hope you all the best. I would love it if you would keep me informed with your progress — if you don’t mind. [email protected]
Megan
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Hi John,
Thanks so much for sharing this information with us, it seems to have sparked a bit of interest from folks on the forum. I’ve never heard of cold laser therapy before, really interesting! Do you know of other centers that also employ this option for patients with PF if it seemingly this effective? Would be so great to know that other areas are offering something that helps folks with their PFTs so much and hopefully even slows down their disease progression. Surely, some physician somewhere would pick it up and find some money for it if it is so helpful for patients. Do you have the article to share with us from Dr. Hall? Even if it is a personal / opinion piece about the effectiveness of this, not necessarily literature-based? Would love to read it if so.
Thanks John, so glad this seemed to help you.
Cheers,
Charlene. -
Dr Hall is a chiropractor in California that has IPF, he has a web site ipflaserstudy.com I had two treatments last week at a chiropractor here in Florida cost $40 a treatment and two this week with one planned Friday. The Egyptian study was done in Cairo by one of our country’s top scientist recognized by George Bush and Obama, his office for research is out of Georgia Tech.
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Thanks again for the information John, looks like you’ve given people lots of homework to research more about this cold laser therapy. So glad it seems to be working for you 🙂
The only caution I have for folks is to be mindful of bias, and that the article isnt grounded in research or literature. I know not everything has to be, just my duty to outline this for people out there as a forum moderator. I will be checking it out myself for more information, but will be ‘proceeding with caution’ I think. If anyone finds more information that was helpful, please do share with all of us and I’ll do the same.
Regards,
Charlene. -
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Hello everyone. The Egyptian study for laser for COPD was done by one of Americas top Scientist Mr Seyed, he has been recognized by George W Bush and Obama and his research office is at Georgia Tech. You can find the laser study by googling ” Egyptian laser study copd” I live in Florida and the cost from my chiropractor is $40 a visit. I had to supply my chiropractor with the Egyptian article and Dr Halls post for my chiropractor to treat me, I have been treated for two weeks and next week will be my third week. I have had some amazing results, I usually run 90 to 92 sitting or standing saturation level and still do at times but usually a day after treatment I have been getting some 96 to 98 saturation levels. I do not think this is a cure but may stop or slow the disease. Anyway, I am feeling better. Dr Halls web site is ipflaserstudy.com not all chiropractors use a cold laser and the one Dr Hall is using is a cold laser 4, seems the 4 penetrates deeper.
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Hi Everyone,
John was kind enough to email me the journal regarding laser therapy from the Egyptian Journal of Bronchology. You can download it here for free if you’re interested in reading it:http://www.ejbronchology.eg.net/ it’s called Low-level laser therapy in chronic obstructive lung disease.
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Diane,
I too suffer from a esophageal dysmotility (nutcracker esophagus). When I investigated lung transplants in 2012, I was told it may disqualify me because it can’t be cured and may damage the new lungs. I have additional disqualifying conditions.
I’m delaying my decision on the laser treatments for a couple of months. I’m also obese and have been on a medically supervised diet. So, far I’ve lost 40 lbs. My pulmo says that weight loss can result in lung stat improvements. I think I should test out one change before introducing another one, so I know which is actually working. Have PFTs scheduled for May. If no improvements, I’ll probably try the laser treatments.
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Hi, Charlene,
I cannot find Megan’s reply concerning laser therapy. Could you send me the information?-
Hi Lynn,
Sure, I will go back to try and find it. I thought it was on this thread, but I agree with you, I can’t seem to find it either now. The forums have been very fussing this weekend, not sure what is going on: some folks say they’ve posted things and I can’t find them, and other posts that I remember were there aren’t anymore. In any case, I’ll go back to my e-mails and see if I can track it down. I think it said Megan herself was a chiropractor and uses cold laser therapy in her clinic/office. Let me see what I can find…
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Hello
This laser study done in Cairo was published last fall 2018, there is some reference to people being treated for IPF, seems everyone responded but treatment was only for 14 days. Dr Hall used the laser on himself 4 years ago and is still using it. I know you can not compare animals to humans but there is a article on google about a Westie dog that had pulmonary fibrosis and the vet used the laser on the dog, the dog did not progress with the disease and died of some other cause 5 years later. Chiropractors use the class 4 laser and know of the benefits and Dr Hall said it needs to be a class 4 laser to go deep enough. These are not cutting lasers. I figured what have I got to lose? This is a terminal disease with aprox a 5 year life span. I was deteriorating. I googled chiropractors with class 4 lasers and the first one I talked to was familiar with the laser and had seen results for other issues but not lungs. When I shared with him the information from Dr Hall and Egyptian study and told him this was a terminal disease he agreed to treat me. The reality is there is no big profits for research on lasers for pulmonary fibrosis so no study will probably be done soon. I know we are all dealt a bad hand with this disease. As for me I am doing the laser, may not be for everyone. I just wanted to share what appears to be something good when there is not much that can be done for this disease. Hope you investigate it and make up your own mind.
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Great reply John, thanks for clarifying that. I agree, since it isn’t grounded in literature, not everyone may be interested in seeking out this therapy but if you are, seems like it could be worth it. I am really glad its helping you! I posted the direct link to the article you emailed me (thank you for that) above so hopefully those who are interested can check it out. 🙂
Appreciate all the time and thoughtfulness you’ve put into the correspondence regarding laser therapy. I’m sure it will give folks lots to think about.
Talk to you soon,
Charlene.
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Hello, hello Charlene, John, et. al.,
I reached out to Dr. Hall and he responded pretty fast. Here is what he said:
Hello Steven,
I would be pleased to register you for our IPF study. I am attaching an IPF Laser Study Questionnaire for you. What is required by our participants is to send copies of your Pulmonary Function Tests and copies of Lung CT scan reports. All personal information is kept confidential. My mailing address is on the bottom of the Questionnaire. Have you started Laser Therapy yet? Do you need help in locating a doctor with an appropriate laser? I would be happy to help you with that.
Thank you for participating in this important study!
Dr Andy Hall.I also started researching buying a class IV laser because I will be unable to go to a local clinic in a couple of months and if it works I would want one handy. This new info we have thanks to John may be nothing short of amazing!!!
steve
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Awesome, thanks for posting this Steve!
Sounds like it might be easy to get involved in Dr. Hall’s study if you can obtain copies of your reports for him. Do you think you’ll proceed?I didn’t know you could buy the lasers yourself. Where have you found some within your researching, Steve? Are they expensive? Goodluck and keep us posted.
Charlene.
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I do not know if purchasing a class 4 laser is a good idea, medical and veterinarians use them and you would need instruction and practice on how to operate one, I did notice a holistic center had one. Seems the laser works but we are in uncharted territory, Dr Hall used it twice a week for a month and then once a week. The Egyptian study they used it 5 times a week for two weeks, I have used it twice the first week and 3 times the second week and I am scheduled for 3 times this week. I also noted they used it on other groups and had positive results and at the end of the study it mentioned no funding for the study. Again I do not think the laser heals but it may prevent the disease from progressing if we are lucky.
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Hi All – after I go to LLLT a few times, I will be comfortable understanding the process but I need to see their equipment to decide what to do. I briefly looked for class IV but no satisfying answers yet. The laser is not a cutting laser and it is best to not touch skin much and keep it moving. The rest I hope I can figure out.
Dr. Hall asked for medical history and I can get that through the veteran’s website, so they will have me in their system. I certainly will ask Dr, Hall to get a chiro for me back east.
John, I deeply and greatly appreciate you posting this incredible find. – Steve
A quick footnote:
Amla has increased my O2 readings consistently 3 or 4 points and slowed my heart rate 10 – 20 BPM. But even with that, I get short of breath sometimes. I think that is because our lungs do not get rid of CO2 efficiently which makes finding meds/supplements/foods/exercise important. If anyone has insight please share for each other…
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First of all, Charlene, I want to thank you for your dedication to this website. It’s amazing, and you are doing a fantastic job! I thought I would join this forum. I have had a huge number of IPF patients contacting me due to this forum. As per the last post by John, you must be a doctor to purchase a Class IV laser, you must be ‘credentialed’ for Class IV lasers, and also, for most people they are costs prohibative. Mine was $27,000. Since 2003, I have owned 4, currently have 2.
Charlene mentioned that laser for IPF is not grounded in the literature. Of course, that is exactly what we are trying to do with this study. I have done other research, lastest regarding a manual I wrote that included 269 of my patients. That research was not published, but I expect the research for IPF will be. I want everyone to know that I would be happy to answer any questions regarding laser for IPF, either on this forum or by personal email. The results from all the IPF patients using laser have been positive. The results John found are not unusual. Increased function and oxygenation. Do I consider Laser Therapy to be a cure? The simple answer is NO. A cure would eliminate the fibrous tissue and the laser does not appear to do that. But the results so far show that it arrests the formation of new fibrous tissue and increases lung function and increases oxygenation. Not all IPF patients that use laser are enrolled in the study, but they do stay in contact. The study only recently was begun due to the fact that all those using laser responded so well. It could no longer be ‘coincidence’. But my experience with research is that you can’t go by 12-15 patients. We need a lot of patients for this study for it to be valid.
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Hello Dr. Hall,
Thanks so much for joining our forums, and for all of your kind words regarding this site. It is filled with such caring, supportive and helpful people – we’re pretty lucky to have such a unique “community” via this platform, and one that makes it so easy for us to communicate from all over the world. Glad you’ve found us!
I agree with you about the importance of being educated when it comes to using a laser, in any form of treatment for IPF. That cost would certainly prohibit most folks from purchasing one privately, but would somewhere that sells these even permit someone to buy one without a medical license? I’d be really concerned about improper use.
Thank you so much for your willingness to answer questions Dr. Hall. I highly encourage people to do their research, and connect with you if they want to learn more but of course involved their current care physicians too whenever possible. I am really happy to hear the positive outcomes you’ve had thus far, and look so forward to hearing more about this as the data emerges. I’m really glad John brought this to light for so many folks!
Take care,
Charlene.-
Dr. Hall,
Is your research study strictly for people with IPF? I have Chronic Hypersensitivity Pneumonitis. So I have fibrosis. I’m on 6 lpm oxygen 24/7. On my last PFT, FVC was 39% and DLCO of 19%. I have no other symptoms except the need for oxygen. Am I a potential candidate for your study?
Thanks
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Hi Terry,
This is one of those things that lately I have been giving a lot of thought about. I can tell you that in my experiance that a study needs to be well designed for it to be valid and presented. I don’t think that several conditions should be ‘lumped together’. Having said that, I think the best thing to do is to have a study of strictly IPF patients, and a side study of other Fibrosis conditions. So, the answer is yes. Lets face it, we can’t wait on the NIH or any other organization to take the bull by the horns and do these studies with laser. It’s just not going to happen, and if it does it will be so far in the future that it really won’t help us with these diseases that we all suffer from now………
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Hi Terry,
Had no idea you were in Sacramento. I would like to suggest Dr McGinnis. I have known him professionally for decades and in fact I personally credentialled him for Class IV laser many, many years ago. He has a Klaser that I highly recommend. Please tell him hello for me! Dr McGinnis phone is: 916-929-8155
Andy
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So glad your’e able to be part of our forums and help out folks looking into laser therapy Andy. Very much appreciate it, and I hope Terry gets connected to see if it helps with HP. Wouldn’t it be interesting to eventually cross-reference the studies and see what happens to both diseases when treated with laser therapy? I’ll keep my fingers crossed that we can move forward with this eventually.
Hope whenever you are it is warmer than the -35 degrees celsius it is here in Canada at the moment. Sure makes breathing outside difficult for those of us with IPF.
Take care,
Charlene. -
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Hi Terry,
Yes, there is an ongoing commitment to laser. I continue to use laser every week, and expect to forever. I don’t know what the fees that the doctor charges, but it might pay to shop around, no use paying more to a doctor for the exact same service/protocol that you can get from another doctor cheaper.
Andy
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Thank you Charlene,
The thing I first noticed about this forum was the warm caring supportive attitudes. I felt very drawn to it. I think that all of us that have been diagnosed with IPF are ‘in the same boat’ and we can really relate in ways that even our own families can’t do.
You are very insightful about Laser Therapy. Class IV lasers are not toys. Only medical professionals are allowed to purchase them. There are some dangers involved, for example even a quick flash to an unprotected eye will cause permanent damage to the retina. As I mentioned, you must be credentialed to use a Class IV laser. I used to credential other doctors. A Class III laser is much different, lay people are able to purchase them, BUT realize that Class III lasers only have a power level of up to 1/2 watt, not nearly enough power to penetrate the chest wall and get deep into the lungs. They are not adequate for use for IPF. I highly recommend at least 10 watts of power to get to the target tissue (lungs).
I too am thankful for John for bringing Laser Therapy to light for a lot of people. I feel that there are alternative treatments that can be very helpful for IPF like Stem Cell Therapy. I’m for ANYTHING that will help an IPF patient. But patients can’t make choices for themselves if they don’t even know what choices are available to them.
Again, thanks for allowing me to join this forum, it is very impressive…….. and I feel somehow like I”m ‘at home’ on this site. Looking forward to sharing some of my artwork on the hobby thread.
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Hi Dr. Hall,
Thanks for your reply and for contributing to post such helpful and supportive information to our forums! We’re very lucky to have this platform for supporting one another, I know as a moderator, that it is a true privilege to be among such wonderful people. Glad you felt that way upon joining us, everyone is very supportive and helpful.
Makes complete sense re: the lasers and the importance of holding a license in order to purchase and use them safely. Its a really interesting topic that John brings up, and certainly one I am going to spend some time reading into more in the coming weeks. I’ve heard there aren’t any credible stem cell tests yet for the treatment of IPF, is this true? I know UCLA is doing some leading research in this area, but I haven’t heard of any other centers. I am curious for this to start emerging, as stem cells have been used in other areas of medicine very successfully. So far what I know is that any paid stem cell trials are scams for patients.
I look forward to continuing to get to know you, and thanks again for joining us!
Charlene.
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Thanks for the quick response, Dr. Hall. I’ll start looking for someone near Sacramento. Will be watching this space to see how others are doing.
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Hi Charlene,
I want to thank you again for the amazing job you are doing moderating this awesome site. You know, when I joined I really wasn’t sure how well I would be welcomed. It has been incredible. I seriously have never in my 66 years seen such a loving, supportive and caring group of people. I LOVE this site. Having IPF I really do feel at home here. We can ALL really relate with each other.
I know that I cannot morally or ethically bypass people with Usual Interstitial Pneumonia, HP or any other fibrous lung disease in an important study. They must be included as their lives matter! We all need to look after each other.
Yeah, the country and Canada is in a deep freeze. The wierd thing is that where I live at 4,500 ft, the last 5 days or so has been unseasonable warm. I went to the lake fishing on Friday, and it was a gorgeous 65 degrees. It’s beautiful there, and when I go by myself like on Friday it is like a spiritual time for me. Lots of contemplation, thinking and making mental lists of all I want to accomplish and how to do it. Catching fish is almost a distraction. I caught and released 8.
You might realize that I am dedicated to what I do. I try to respond to peoples questions right away. But Tuesdays are not good for that. I think I mentioned that I semi-retired last April and I work a day and a half a week. Tuesday is my full day, and then Thursday afternoons. Yesterday I left for work at 7:45 am and I didn’t get home until 8:15 pm. By the time I got some dinner I was just too exhausted to get on the computer. When I work, I really work. But the good thing is that working a day and a half means five and a half days off! I’m loving it, and it gives me time to work on the things I’m dedicated to. I keep wondering when to work on the 3rd edition of my manual, I’m out of the 2nd edition and need to print more. I will find time, somewhere, but sometimes a guy just needs to ride his Harley or go catch a fish! We need to enjoy the time that we have on earth, and having something like IPF makes it even more important. Anyway, Charlene, know that you are loved by everyone…….
Blessings,
Andy
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Hi Andy,
Thank you so much for your kind words. I read them this morning, but then didn’t have a chance to get back online, and they truly set my day off to a good start. I am so glad you found the forums, and thrilled that you feel welcome and supported here. I couldn’t agree more with you re: the supportive, kind and caring nature of everyone on this site. It really is such a unique place!
It would be so interesting to eventually see the effects of laser therapy on UIP, NSIP and HP patients as well, since all these diseases are linked with the common thread of lung fibrosis. Maybe someday!
So many people on the forums enjoy fishing, and I am so jealous. Do you eat what you catch Andy? Fresh fish and seafood is the best. I will miss this truly after I have my transplant, as I read recently patients aren’t supposed to have it after getting new lungs. The temperature and weather sound beautiful there! It seems many parts of the world are “unusually” or unseasonably either warm or cold. I guess we have global warming to blame for that one.
No problem at all re: taking time to reply to everyone. I can’t keep on top of it all some days either, and hope folks know that I’ll connect as soon as I can. You sound very dedicated to your work, but please don’t work too hard and ensure you find that good balance of doing things for you and for others. 🙂
Take good care and thanks again for joining us on here!
Cheers,
Charlene.
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Hi Lynn – I take Amla in fine powder in some hot water and started with a half dose sometimes 2x per day. I bought it through Amazon. Went to my cardiologist who is from India and he laughed when I told him and said good news.
It is a little tricky to dissolve so I let it sit a few minutes then stir and add more water more stirring. Also I have a small sealed jar which helps – put the water in first. Hope it helps you. – Steve
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Welcome home, Dr. Andrew!
You are correct, people here can share and understand certain aspects of this disease better than family and slowly educating and explaining to them is important. Without a cure or stoppage, IPF final stage can be very disconcerting for our loved ones.
Would you be willing to share a little history about your IPF? When did you first discover it and how long do you think you had it before discovery? As a physician, I will assume you are more aware than most of your body when changes come about.
Regards class IV – fully understand. I will be out of US in the Philippines soon and that was one reason I am looking for class IV. I have two family members as doctors, one of them is in the Philippines. Also a few nurses and pharm sales in the fam too. I worked cardiology in the US Navy and greatly enjoyed the experience. Never one to be shy about learning new things, this is a special one to my heart but if I can’t do – no worries. Just glad you joined us…
Blessings – Steve
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Hi Charlene – I forgot to mention I go for a consult Wednesday to start laser therapy. Is it available around you anywhere? I did not know you are scheduled for a transplant and maybe the therapy would help you. I am sure there are strict – maybe stringent requirements you must adhere to in order to maintain your position for that…
Go throw some water in the air outside and add it to your “bucket” list. Peace in your heart – you work so hard for us here… Steve
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Sure Steve, would be happy to share my story.
Just over 5 years ago a developed a cough. Didn’t think too much of it, but it slowly over a long period of time got worse and worse. I figured I had maybe aquired a new allergy or something. Then, I soon noticed that when hiking in the mountains where I live I started getting winded easily. Really wasn’t like me. And then I had to swim a hundred yards out to my moored boat at a lake at 7,000 ft elevation, (the same lake I got my mile swim merit badge as a boy scout). This should have been a piece of cake swim, but less that 40 yards into it I ran completely out of breath. Really thought I could drown out there. I made it to another boat 20 yards away, and after a while was able haul my body into it. I borrowed a life vest and after a 15 minute rest trying to catch my breath at managed to get to my boat with a lot of effort. I would have died had it not been for the life vest. HUGE WAKE UP CALL! The next week I called my family doctor and he referred me to the pulmomologist. I should have not waited so long with the cough that got worse and worse, and yes, I am a doctor, but I’m still a guy! I feel the ladies smiling here, because there is a lot of truth to that statement. Women are much more likely to seek care earlier than men…… Anyway, the pulomonologist did a CT scan and Pulmonary Function Test and we sat down together. He said I had IPF and the it was going to take my life. Shocked, I asked how long I had. He said I expect to put you on oxygen in 4 years and you will likely be dead in 5. I told him that I was just way too busy for that what with my very busy practice and Laser teaching schedule. Besides, hell, that just didn’t fit with my long term plans. The thing is that the males in my family have great longevity. My 96 year old father still runs 20 minutes before his circuit training at the gym 3 mornings a week!!! He is still a board member of the Credit Union he founded 70 years ago. So, the pulmonologist rx’d Symbicort. On the way home from the Pulmonologist I cried for a short while. Not so much as that I was just handed a death sentence, but because 23 years earlier I had a VERY serious health issue and was told by 4 diffenent Neurosurgeons that I would never work again and that they would have me strung out on Oxycontin and I would spend the rest of my life on the couch. It was hell recovering from that problem but I did manage to get myself back to work in 18 months. I have been an over-achiever my whole life and those were very dark days for me. I didn’t want or need another serious problem. Therefore, the tears…… But just like the health issues I had, the neurosurgeons could not help, I went back to my Chiropractic roots and overcame that problem. With the IPF, I decided that there was no cure and I need to get back to my roots again. Being an expert in Laser Therapy, I began treatment on myself using my best professional judgement as per dose, frequency, etc. Had no idea if it would help, but the International Laser Conferences I had attended had had a Cardiologist from Denmark that cured Myocardial Infarction, a Nephrologist from England with success on Kidney issues and a doctor from Russia that cured Pancreas issues. Why not try it for IPF? What the heck did I have to lose? Low and behold, my subsequent Lung Function tests improved. Subsequent CT’s showed no additional honeycombing. I’ve been very faithful using the laser every week. Presently, over 4 years later I’m better than when all this started!
So Steve, ask a simple question and get a five page answer!!!!! Sorry…….. (:
Blessings everyone……..
Andy
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Thank you so much for taking the time to share your story Dr. Hall. I always appreciate learning about others, and their ‘journey’ to diagnosis as it seems so different for each of us. I was 13 months before I had a final diagnosis, and learned only in hindsight that the doctors suspected it was IPF for 4 months but were determined to find something else, given I was 28.
I bet ending up short of breath while swimming was really scary, I am so glad you had access to a life vest to help keep you afloat. Not being able to complete an activity was my cue that something was wrong as well. I was in Australia and climbing the Sydney Harbour Bridge, which seems like it would be strenuous climb but really isn’t. When I became super winded, after playing hockey and swimming for years, I knew something wasn’t right. Are you still on the Symbicort? I was prescribed this as well but can no longer get a deep enough inhalation to take in the medication of a turbuhaler. I had to switch inhalers, and I am on several now, although not sure if any of them are doing any good or not.
Your story is amazing and I am so glad that you did give the laser therapy a try for IPF using your professional knowledge and judgement. This is huge for many of us, if we consider this alternative therapy and gain some success in slowing down the disease progression! Thanks again for sharing and being so thoughtful in all of your replies 🙂
Cheers,
Charlene.-
Dr. Hall,
thank you so much for sharing your story as well as all of your information. I really appreciate the humor in a story about something so tragic as Pulmonary Fibrosis. If it were not for some humor, I would be hysterical. My husband was diagnosed in 2014 and it after a few months of pretending it really was not the case, I spent the next few months crying. I am now very proactive in my husband’s health.
Thank you again for all your input!
God bless all of us
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Hi Rebecca,
Thanks so much for chiming in and joining this topic thread. I completely agree about the importance of humour! Somedays I focus on the emotional, tough stuff and some days I choose humour to get me through and I know I am better off the days I choose to laugh. Its important to find a balance but so thankful we can find humour amidst tough situations still!
Take care,
Charlene.
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Thank you for sharing Andy!
We can all learn from your experiences and add to the collective (No I’m not a Borg)!
So if the class IV helps the heart, kidneys, etc, – would it help with fluid filled lesions in the kidneys?
I think I read about your father somewhere a while back – pretty cool… SteveD
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Great question Steve!
I just discovered at the doctor’s yesterday that one of my medications is causing trouble with my kidney function. Now I am kind of on the hunt to find out what I can do to preserve it because I need the medication causing the problem. That said, I’m not really researching much yet as I am waiting for the lab to call me back today or tomorrow with more details then I’ll know how to proceed and what I need to do.
Talk to you soon!
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@Rebecca-Schrantz-Lilly Thank you too for sharing Rebecca. Your insights and testimony can help my wife too. Spring is almost here! – Steve
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To Charlene, Dr. Hall, Terry, John, Steve and anyone I have left out.
I have an appointment with a Physical Therapist on this coming Monday to try the laser. It is a class 4, K laser. I have chronic hypersensitivity Pneumonitis, but if it stimulates the lungs and helps with oxygenation, count me in. I have am appointment with my transplant surgeon next Thursday, and I will be having the 6 minute walk test and breathing rests. We will see if there is any improvement since the last time 6 months ago. Dr. Hall, do you think I should have more than 1 treatment before I see the doctor?
Can you have a treatment every other day, or will it be harmful? The PT will know all this, but I want to know now, if possible.
Thanks, Lynn-
Hi Lynn,
This is great news, and I know Terry is inquiring about whether or not laser therapy might help with HP as well. Glad you found someone local that can help you with this, and that Dr. Hall provided you with some guidance on how much to do ahead of your appointment with the transplant surgeon next Thursday. Please let us know how both the laser therapy treatment goes (I am assuming it wouldn’t be painful, right?) and then the 6-minute walk test next week. I’ll be thinking of you and hoping everything goes well!
Take care,
Charlene.
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Wonderful Lynn! You probably won’t see a great deal of change with one laser treatment, and every other day would be very appropriate in the beginning of treatment. Laser Therapy is cummulative, the more you do the better the results. Then again, as far as one dose you could over do it, just like a medication, just because a little is good, a whole lot in one dose isn’t good. In other words using a Class IV laser for an hour would be a huge mistake. By the way, I have talked to several laser experts around the country and they all think a better dose would be 10 watts, continuous wave, 5 minutes on the front of the chest and 5 minutes on the back using an intercostal application (between the ribs). I will be looking forward to seeing how it goes for you!
Andy
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@Lynn-Schmitt, et al,
Lynn that sounds like terrific news. Would you mind sharing how you found the PT to do the class IV? I am so new at this type of massive potential, I would like to learn a little more. Appreciate your input. – Steve
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Hey Andy – I forgot to ask about your dad. Seems I read something about him a couple years ago, don’t remember where though. So can you share a couple of insights?
I knew a couple of heavy hitter religious figures out in LA when I had one of my direct marketing agencies and visited potential clients in LA a couple times. – enjoy! – SteveD
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Hi Lynn, Its going to work, stick with it and share your results. I would say good luck but I do not think luck has anything to do with the results. I finished my 7 treatment yesterday and I am scheduled for another tomorrow. Amazing results.
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I think this laser treatment will treat most lung conditions, again google the ” Egyptian laser study copd” the 3 or 4th page references that in Cairo they used the laser on children with asma, copd adults and people with pulmonary fibrosis and other lung conditions, but their study was only done for 2 weeks but everyone improved. long term we have Dr Hall a true pioneer and in my opinion a brave person who has used it on himself for almost 5 years with no progression of the disease. Dr Halls results are better then a lung transplant, at 5 years with a lung transplant there is 50% survival rate and the anti rejection drugs are hard on the other organs of the body. As for me, I have done my 7th treatment and scheduled tomorrow for another treatment. I feel good, a lot better then I was prior to treatment. Still have issues with bending over or hills but I have just completed 4 one mile walks I was high 70 low 80 during my walk with having to stop about 6 times, now I stay above 90 and do not have to stop. I feel better, Amazing results. Most all study’s are done by the drug company’s in anticipation of profits, its up to us to do this and get the word out, aprox 40,000 people are diagnosed with this disease every year. If we do this and all start reporting the results we will save lives starting with our own life.
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My sister has IPF and is not a candidate for a lung transplant, having had lung cancer last year and going through an arduous course of heavy metal chemo that left her with several complications. She is curious to know if the stage of one’s IPF has a bearing on the possibility of improvement from this laser therapy. She is not end stage per se, but was diagnosed in 2014 and her condition has gotten worse. Dr. Hall, do you have any input on this issue? — Donna Murray
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Hi Donna,
Thanks so much for getting in touch with us and for joining this topic of conversation on behalf of your sister. So sorry she is going through such a tough time at the moment. The laser therapy discussion sure has been interesting, hasn’t it? I am curious about it myself and keep my eyes peeled for responses that might interest me, or to learn about it as much as I can. Dr. Hall is a great resource for us! I am sure he will answer your question about laser therapy for your sister as soon as he can 🙂
Take care,
Charlene.-
Donna, I could not find your original post, but I think it was for your sister. I’m trying to not make final conclusions on Laser Therapy until proper research is complete. However I can tell you about the anecdotal results that we have observed. As I recall, your sister was maybe late stage or close to it. And yes, I have personally worked with a late stage patient. Very late stage. She was able to reduce the amount of oxygen she was on 24/7. The nice thing is that after about 3 weeks of treatment, she was able to go out to eat and even took in a couple movies, where before she was housebound. She told me she had more ‘spunk’. Sadly though, her brother and sister, also having IPF passed away within two weeks of each other. They both lived out of state. Our patient on her last visit said she would not be back, she wanted to join her siblings. She quit laser and just gave up in her grief. She passed 3 months later. Honestly, can’t say I blame her. She had no family.
What we have found so far is that Laser Therapy arrests the progression but increases function and oxygenation. And that is why this late stage patient was able to get out again. This is also why in my opinion that the sooner an IPF patient starts the better. Just like early detection of cancer or anything else, the sooner you identify it and ‘jump on it’ the better. I started Laser Therapy like the day after diagnosis and I know that is why I am doing so exceptionally well over 4 years later. But honestly, I still have a lot of questions. Like, how long will this prolong your life? I don’t know….. Will the IPF flare up down the road for some funky unknown reason even if doing laser? I don’t know……
Anyway D0nna I hope I was helpful. I do think your sister would see some postive change. However, we need to have realistic expectations for a later stage patient. I Would be happy to answer any other questions. Blessings to you and your sister.
Dr Andy Hall
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Charlene,
I have just joined this forum and would like to complement you on your excellent leadership for PF patients. Your kindness and care for others comes through and your carefulness to maintain the proper perspective is truly appreciated. My prayer is that you and others who suffer this disease may find what we need to better our health and find “peace which passeth understanding”.
Blessings to you, Ron
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Hello Ron,
Thank you so much for joining our forums and sending big welcome to you! Your kind words truly touched me today, thank you very much I am very appreciative of them. This forum is filled with such kind, supportive and wonderful people that I consider it a real privilege to be able to moderate this site. We’re all in this together, and it is so nice to be surrounded by people who truly “get it”. I am so glad to be here, and glad you’ve found us and joined the forums too. Please feel free to take a look around and connect anytime.
Warm regards,
Charlene. -
Hi @drandyhall,
Are you able to see Donna’s post if I tag you in the reply? It should be above, and her sister Marsha kindly responded as well. If you don’t see their messages for some reason, please let me know and I’ll make sure to put you in direct contact with them as I think you might really be able to help. Take care and I hope you’ve had a nice weekend!
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Hi Charlene!
Glad to be back….. My wife and I were 3 1/2 hours away for the weekend seeing friends near the coast. We had to leave early to come home after learning we have a blizzard coming. What a difference 9 days makes, I was fishing on my boat in 65 degree weather soaking up some sun and getting some fresh air. We got home only to find the power had already gone out and our house was freezing. The power is back on. For now. I did however finally get back to Donna and Marsha. I have more replies to make, mostly on my personal email regarding laser and IPF. Hope I can get it all completed before we lose power again. They are predicting about 4 feet of snow at my house. I posted on the thread about the cold weather and how it makes my cough so much worse. Right now, I’m hoping I can make it to work on Tuesday. But with all the snow, the roads may be impassable. Ugg……. Not really looking forward to the snow blower and shovel work ahead of me the next few days. Hope it’s warming up where you are.
Oh yeah, I know you asked if I eat the fish I catch and yes I do some, but I hate to freeze fish, I love it fresh, and I like to maintain the resource by releasing all the fish I can.
Blessings!
Andy
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Hi Andy,
Thanks so much for getting back to me, and I hope this note finds you safe from any impending blizzard/snow storm! Sounds like you had a nice weekend, and no problem at all for taking some time to reply about laser therapy or to any threads on this forum, for that matter. I know you’re busy and we all understand that and appreciate your contributions to the forum!
Let me know if you can’t get ahold of Donna and/or Marsha, or for some reason your replies aren’t reaching them. The forum can be finicky some days, and I swear it has a mind of its own. I will ensure you can connect with them directly if you fear your replies aren’t reaching them as I know they’re eager to hear from you when you have some time.
Stay safe in the storm, and I hope your power has remained on. Thankfully, it is starting to warm up here – it is +8 degrees today which seems like tropical weather compared to what we had last week. I can’t believe the difference. Anyway, stay warm and we look forward to hearing from you when you have some time.
Cheers,
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Dr. Hall, thank you for your response to my last post! I will contact your referrals tomorrow to see if either administers the laser therapy I am seeking. I’ll let you know if I find someone.
My paperwork, CT scan and test results I will mail to you as soon as I have them all together. All I need is your mailing address!
This is so exciting. I feel grateful for you and all the help you have given Donna and I on our mission to get me going to receive laser treatments close to home.
You are an amazing human being. Thank you for helping me. Blessings to you,
Marsha ???
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Marsha, thank you for your kind words. Very sweet! Please let me know if the doctors don’t get back to you as I will personally call or email them for you.
The mailing address is on the ipflaserstudy.com website, but I’ll give it to you here.
Address:
Dr Andrew Hall
PO Box 1100
Twain Harte, CA 95383
Thanks again for being involved in the study. We are still very shy for the numbers of patients we need for a valid study.
Blessings,
Andy
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Dr. Hall, I inadvertently sent the above posted to you in mid-sentence…..I was saying since we’ve been communicating I feel a profound lightness of being in place of the heaviness before. Blessings to you and your family! And thank you!
Marsha
UPDATE: I can’t find the first half of this continuation. Good news that one of your referrals is willing to treat me as part of your Study! I gave you info and let you know he, Dr. Gary J. Cebek, would like to talk with you. He gave me his number, 724-327-1220 if you wangt to call him. I will reconstruct the missing info tomorrow when I am less tired (and spacey!).
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I am so happy to hear this @marshaharris!
What an amazing community we have here, to bring hope and light to others as best we can, whether it is through research, studies or even friendship. I am so lucky to be part of this community! Wonderful news re: one of Dr.Hall’s referrals being willing to treat you. Please keep us posted on how you make out with laser therapy. Sending hugs to you
Charlene
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Hi Melissa – yes humor helps us to focus outward and just keep doing what we can. Now when spring comes, I can just see you on the mower tooling around your yard but you gonna have to build a ramp if you want to ride it in your home. Next best thing is to rig a tent and stay there when it warms up some.
I do have high hopes laser therapy will work for us but on another thread several talk about herbal products they swear by at a lab in USA called Wei. If one doesn’t work, the other might and possibly the two together could change the entire IPF landscape. Wouldn’t that be amazingly – the grassroots (we patients of IPF) come up with the solution that cures. Take that big pharma… Take care – Steve
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Hi Steve –
I totally agree with researching IPF and trying anything we might think will be of help. We advocate for ourselves and share information to others when we can. I just started pulmonary rehab and go twice a week. I also will have my first laser treatment tomorrow, weather permitting. It is snowing in Massachusetts with ice to follow. I recently joined a Facebook page devoted to West Highland terriers with lung disease. Many of the treatments are similar to ours and they have been doing the laser therapy treatment for PF for a number of years as you probably know. Whether dog or human we all share similar diseases and definitely have most of the same body parts! I have been reading your posts and am certainly interested in the treatments/meds/supplements and so forth that you are trying. We have to keep the research moving forward!
Melissa
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Hi Lynn – So to answer – yes I am on O2 at night at 2L. But there have been several times during the day I started to reach for it but didn’t. As I adjusted to some new supplements, I feel a little strength coming back and I am sure part of that is anticipation of reuniting with my wife after a 1-year absence and the promise of better weather just around the corner.
I go for a consult for class IV Wednesday but I think the end result will be more effective when I keep trying various herbs, diet, exercise, and spiritual walk, maybe add in Wei at some point. There also seems to be a couple break through’s on the horizon with clinical trials – all good… Steve
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Hi Melissa – I hope all goes well for your laser treatment tomorrow. All class IV here are too far except one and it isn’t the right laser and the price is way too high. Sad news but it is not in my hands but God’s. So I wonder how to find out if a veterinarian has one and will use it on humans?
The two supplements that help the most are astragalus and serrapeptase – they may even be part of the Wei Labs concoction that others here swear by. These two have all but stopped a runny nose and lung congestion.
Other supplements that help are a good “B” complex, D3 and K2 m7, amla for the heart but a caution on all of these. Make sure they suit you. I can give more info on why and how much if you want. Take care – Steve
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Hi Steve –
I make notations of all the supplements,etc., that you post so I can research them to see if they might work for me. I am on several heart meds and I know you know such information needs to be taken into consideration before we try them.
The Facebook group I joined is called Westie Lung Disease – IPF in USA. Several members (humans with the disease) have recently posted about Dr Hall and there has been very positive feedback.
I was impressed with the chiropractor I saw on Wednesday – she had already initiated contact with Dr. Hall. The laser procedure itself produced some slight warmth in the targeted areas. She also did some work on some tight areas on my upper back which she finds is typical of people with breathing issues. I go back tomorrow.
I am not looking for any changes after one treatment but as time goes on, I hope to see some changes in my O2 levels/overall breathing. Even a slight change would be most welcome!
Thank you for all the info you are posting!
Melissa
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Thanks for asking about my dad Steve. I had a conversation with my dad about a year ago that had a profound affect on me. I will try to not make this too lengthy.
When they passed out the parents, I struck gold! Mom and dad were always very supportive for me and my two brothers. My older brother is also a doctor. My younger brother is a professor of Nuclear Medicine. Mom passed away 4 years ago this week from a very aggressive lung cancer. She passed just 13 days after diagnosis. I hope that when I die it is with even half the grace and dignity of my mom.
Dad was the head administrator of a hospital in Modesto for 34 years. He also founded a credit union in Modesto. Dad is 96. He goes to the gym on Monday, Wednesday and Fridays. He RUNS for 20 minutes before his circuit training. On Tuesdays and Thursdays he goes to bible studies. He is involved in 3 different churches. He is a VERY spiritual man. He is very smart, very high IQ, but very wise.
Just about a year ago, he came up to Sonora at the end of the morning so we could go to lunch together after his adjustment at the office.
During lunch, we talked about family stuff, and then as as always he asked how I was doing with the IPF. I told him I was doing great, the laser was still working. Then I said, you know dad, I often wonder why I got IPF. You know that I have always lived a healthy lifestyle, good nutrition, exercise and a good mental attitude. It doesn’t make sense to me. He said he wondered the same thing and actually prayed about it. He said it was in Gods plan. I said I didn’t really like God’s plan….. Dad asked about the other IPF patients that I had found laser providers for. I said that just like me, they had all improved. He said that you know son, this condition never improves. You know, there are a couple drugs out there that slows progress for some people, but it doesn’t make you better. I said, wow dad you have done your homework. He said that like you son, I always do my homework. His said that this could be one of the greatest discoveries ever for IPF patients and that this was part of God’s plan. I said that some studies really need to be done, but that I had contacted the NIH, the American Lung Association and some other organizations, but that none of them were interested. He said that God’s plan is for me to do a study on this. I told him that the clinical research I’ve done was on muscle release technique and adjusting techinque. The thought of doing research on a disease that kills people scared the pants off me. I may not be qualified to research that was of such a serious nature. Besides, there is no way I could get the numbers of IPF patient to do a valid study. And with the HIPPA laws in this country, some pulmonologist or other organization just simply can’t send me a list of names of patients and stuff. Not going to happen. Dad said that your mother and I have never taught you boys to back down from a challenge and that it’s in God’s plan. He said that he has confidence in me and that I have had research experience and that I have lot’s of underst.anding and expertise with Laser Therapy. Dad said I want you to listen to me very carefully. God has a plan, and He will put the right people in your life at the right time. It will happen when you least expect it. He went on to say to have trust in God and have trust in yourself. He said be patient. I said thank you dad for all of your wisdom and support and advice, I appreciate it more than you will ever know. I love you dad. I love you too son……
So dad I have two more questions for you. Number one, how was your lunch? It was great son! Question number two, do you have room for dessert? He said sure, and I’ve been looking at the pies in the display case. I’m thinking about the lemon pie. I said yeah, I’m looking at the apple pie. Dad, let’s indulge!!!
So. The time has arrived. The right people are in my life. The time is now…….
LASER LIGHT LIGHT= Letting In God’s Healing Touch
Andy
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Andy,
Thank you for your story! My husband was diagnosed in 2014 with IPF. He is on Esbriet’s generic which we get out of the country since our insurance won’t pay for it. He is maintaining but I would love to find someone in the Phoenix area that has the class 4 laser therapy device. Any information you can provide will be most appreciated.
I too believe in God’s plan but I am thinking since my husband is still with me, God wants me to keep searching. He helped me find the generic version of Esbriet so I know He wants my husband to still be with me.
God bless you and your dad!
Rebbyreb
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Hi Melissa – as I learn more about serrapeptase it seems it is almost too good to be true. I found a couple of videos on YouTube that were helpful. Typically if there is ever any reaction it is an ongoing detox because of how our bodies store stuff and of course, there are some cautions if you have liver or kidney problems at high doses.
I worked in cardiology when in the Navy so I know the meds typically prescribed could over time be reduced using serrapeptase and another one I am learning more about but don’t recommend yet anyway is nattokinase under the watchful eye of your doctor. – Steve
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His LIGHT is always laser-focused, Andy.
It is good to understand we have a purpose and not just an accident to wander aimlessly for a few decades and disappear. I read about a guru recently who says you cannot stagnate in life because you’ll go nowhere. Interesting comment, made me remember how many people think we came from a stagnate pond. Just isn’t possible, perhaps they have not heard of irreducible complexity…
Thank you for sharing about your father and joining PF News.
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Andy Hall,
Thank you so much for sharing your experiences and your research. I was diagnosed with IPF in October 2017 and have lost ground over the past year but have recently felt much better. I would appreciate a referral for someone who does laser therapy (Class 4) near Ft. Worth, Texas.
Regards, Ron Johnson
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I’m intrigued by your work Dr Hall and would like to find someone in this area. I don’t want to burden you, but how do I go about finding a chiropractor that is knowledgeable about this treatment?
Marylin-
Marylin, you make me smile. It’s very easy! All you or anyone else has to do is tell where they live and I will be happy to do a search. Trust me Marylin, it is NOT a burden to me at all. I just got home from work not too long ago and had dinner. I work all day on Tuesdays and Thursday afternoons and never really get a break while working, so those days I may be slow getting back to people. I don’t usually get home til about 8 pm or so. I always work til I’m done, and it can be a long day but I can’t turn any patient away…… Also, I’m in California and seems like most people are on Eastern time. But I promise everyone that I will respond.
So please let me know where you are and let me help you.
Andy
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Hi Andy,
Laser therapy sounds very enticing. I have been diagnosed with IPF for 4 years. I use O2 on exertion. Was on Esbriet but was unable to withstand the side effects, tryed Ofev which caused elevated liver ezymed.
I had a bilateral mastectomy & have bilateral silicone implants, would this prevent me from having Laser?
I live in the Chicago area.
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Hello Maureen,
I love your name, same as my mom’s! I always thought it was such a classy name….
Anyway, mastectomy are not a problem with the laser. There is no contraindication. I believe that the sooner one starts laser therapy the better. I have heard from a number of IPF patients that they do not tolerate Esbriet or Ofev very well, and therefore they are looking at laser as an alternative. My pulmonologist advised Esbriet for me but my insurance didn’t cover it and at $9,000/month it was out of the question.
Chicago is a big town, I think there are many different zip codes there, let me know what yours is and I will find a laser provider near you.
Best wishes,
Andy
BTW: do you watch the Super Bowl? Go Rams!
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Thank you so much for your response, Dr. Hall. I’m not sure what happened to my post, but you have given me hope that if Marsha can find someone to work with in Pittsburgh she may see some improvement. And thank you Charlene as well. You are a wonderful moderator for this site. I have followed the PF News for many months and will continue to do so. Marsha has joined as well and was excited to hear about this topic.
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I have just joined this forum and would like to complement you on your excellent leadership for PF patients. Your kindness and care for others comes through and your carefulness to maintain the proper perspective is truly appreciated. My prayer is that you and others who suffer this disease may find what we need to better our health and find “peace which passeth understanding”.
Blessings to you, Ron
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Hello Ron,
Thank you so much for joining our forums and sending big welcome to you! Your kind words truly touched me today, thank you very much I am very appreciative of them. This forum is filled with such kind, supportive and wonderful people that I consider it a real privilege to be able to moderate this site. We’re all in this together, and it is so nice to be surrounded by people who truly “get it”. I am so glad to be here, and glad you’ve found us and joined the forums too. Please feel free to take a look around and connect anytime.
Warm regards,
Charlene.
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Thanks for your quick response Allen Hall
I live in a suburb Palos Park, just southwest of Chicago. Was Dx 4yrs ago, am presently being tx at Loyola.
My concern was not about the mastectomy, but about the cohesive gel implants being problematic as they can be affected both by warm & cold temperatures.
I am a football fan, but moreso a Chicago Bears fan. Since there not in the Superbowl??!!
Hope to hear from you soon
Maureen
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Hello again Maureen,
The good thing about laser is that it warms tissues but when properly applied does not ‘heat’ the tissue. During treatment you feel a nice healing warmth but again will not burn if done correctly. That is why we use laser with patients that have metal implant, screws, pins, etc with no problem at all. Currently I’m treating a patient that shattered both bones in her ankle and she had metal straps, screws and pins to hold it all together. We use laser to stimulate and promote healing. It will heal in half the time and increase tensile strength to the bone, making it even more stable.
So, using the laser with the implants should not be an issue.
I found Integrated Healing Solutions in Orland Park near you. Phone: 708-403-5075. In Chicago proper there are a LOT of laser dodctors.
Blessings Maureen!
Andy
ps, I think the Bears overall had a good season……..
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Hello!
This new member is happy to have found this group! I am very interested in the cold laser therapy issue and have read all of the posts regarding this potential treatment. My IPF was discovered when I went to the emergency room in 2014 for what I thought was asthma. Turned out I was in Afib and spent 4 days in the ICU to figure out which meds were needed to better control my heart rate. A routine chest X-ray showed some abnormalities – there initially was a conflicting diagnosis of a either a respiratory infection or interstitial lung disease. IFP is now my diagnosis. I believe I had symptoms as far back as 2008. My plan is to find someone near where I live who is able to perform cold laser therapy.I live in Groton, Massachusetts and would also be willing to participate in any study!
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Hello Melissa! Welcome to this group! You have certainly found a group of wonderful, caring and supportive people. I have found two laser providers both within 25 miles of you. King Chiropractic in Chelmsford, phone: 678-821-9014, also, Condon Chiropractic Office, phone: 978-474-4500.
If for some reason that doesn’t work out for you let me know and we can find more but further away. So happy for your willingness to participate in the laser study!
Again, welcome Melissa!
Andy
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Andy,
Thank you for your quick reply! I will make phone calls tomorrow to both. I have remained in NSR since July thanks to Dofetilide and a cardioversion. My cardiologist was hoping it would make a difference in my shortness of breath but unfortunately it did not. Now my focus is on better lung health and this is a promising start! I am both hopeful as well as excited!
Melissa
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Hi Melissa,
Thanks so much for joining the forums and sharing a bit about your story with us. So glad you’re here, and I know Andy will help you connect with someone who does laser therapy in your area! He is an excellent resource and so glad he’s now part of our community. Goodluck and feel free to write us any time!
Warm regards,
Charlene.-
Hello Charlene-
I am indeed happy to be a member of this group! You provide hope as well as a wealth of information and I look forward to all new publications. I retired from teaching a year ago so I could concentrate on my health. Being short of breath with simple exertion pretty much sucks for us – hope the word “sucks” isn’t offensive! We make adaptations to keep as normal a life as possible. For example, I have a stool on wheels so I can move around the house without getting too winded. I walk when I can to accomplish tasks but when walking proves too much, I have wheels! I started pulmonary rehab last week and we will see how that goes. Many thanks for accepting me into this group!
Melissa
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Hi Melissa,
Thanks so much for your reply and your kind note about the forums! This online community is a pretty special one – very supportive, encouraging and helpful towards one another, so I am glad you found us and look forward to getting to know you a bit more through this platform.
Glad you were able to retire and focus on your health, I can only imagine how tiring it would have been to teach with IPF. What grades/ages did you teach? No offence taken here at all with the word “sucks” – I couldn’t agree more that it sure does. I try to keep up with friends my age (31), especially when it comes to shopping, traveling, etc. and when I can’t, the word sucks comes to my mind too. I love the idea of having wheels, maybe I should look into this for longer, more physical outings. I would be easier then lugging my oxygen along I would imagine!
I hope your pulmonary rehab program goes well. I greatly benefit from it when I do a session of it. Goodluck and keep in touch!
Charlene.
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Hi Charlene –
I was hoping to respond back to you earlier but unfortunately,I tend to be a procrastinator by nature!
Regarding teaching, I have Masters in Intensive Special Needs and my students presented with a variety of physical/cognitive challenges. I had a lot of staffing so despite the IPF diagnosis, I was able to work with few issues. I was fortunate to be able to have my health insurance covered by the school upon retirement and so I decided to stop working and concentrate on my health. The only possible drawback has been in terms of physical activity levels. I was more disciplined about getting out and moving about for obvious reasons when working and have become more of a slug since being able to stay home and that has impacted my breathing to some degree. Being “deconditioned” is not our friend! So, rehab is helping for sure and I learned the hard way that I need to keep moving.
Thanks to Dr. Hall,I am seeing a local chiropractor who took it upon herself to reach out to Dr. Hall before she started treating me. I had my first session on Wednesday and will go back for a second one tomorrow. She also did some spinal manipulation after as she found me to have some tightness in the upper back which is often related to people who have lung issues. I have a small tattoo on by upper right shoulder which she was initially concerned about because the treatment over a tattoo can produce a burning sensation. I told her to go ahead anyway and the good news is, with the exception of a slight warmth, everything was good.
I joined a Facebook page a few weeks ago called Westie Lung Disease – IPF in USA. I initially came across the study while doing a treatment search for IPF and from there I was able to find your section on laser studies. Yesterday while I was waiting for rehab to start, I took a look at the Facebook page and was excited to find posts regarding Dr, Hall and his work with human IPF patients. This is another avenue for us to exchange information to help find a cure for this terrible disease. The posts regarding Dr. Hall were very well received by the group’s followers.
I hope all is well with you!
Melissa
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Hi Melissa,
Lovely to hear from you, thanks so much for such a thorough response. Its awesome getting to know folks on the forums so I really appreciate the time you took to post your reply for me 🙂
Your Masters sounds incredibly fascinating to me! We don’t have any Uni programs like that around here, but it would be something I would highly prioritize studying. How neat! I work with a large caseload of children under 18 years old providing collaborating care for kiddos with mental health, behaviour or developmental difficulties. I also support a lot of children and families through grief. I love my job, but is can be exhausting especially as my IPF progresses. I do agree with you though re: the physical activity levels. On the days I work from home, it is a lot easier to just stay in bed then get up and do anything and as tiring as it is, I know being active and going to work is good for my lungs. I am really glad you’re doing the rehab program though, it is so helpful isn’t it? Is it through your transplant centre?
I am so glad to hear that the laser therapy went well on Wednesday and hope your second treatment did also. It’s so nice having Dr. Hall here on our forums, and hearing all the positive experiences patients and colleagues alike are having with him and his laser therapy. So glad you’re trying this out, and do keep me posted if you find you notice any eventual changes after a few treatments. I’m so curious to know! 🙂
I agree about this site too, being a wonderful platform to exchange and discuss information. I know my friends and family try hard to understand what I am going through, but there is just a level they can’t understand. Its so nice to be among people on this site who truly “get it”. Everyone is also so lovely, welcoming and supportive. I’m glad you’re here and hope you continue to find it of benefit.
Feel free to write any time!
Enjoy your weekend,
Charlene.
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Dear Dr. Hall: Thank you for your thoughtful response to Donna Murray, my sister, regarding our interest in Laser Therapy. Since my diagnosis in 2014, I have received no treatment except oxygen. My disease is now severe due to progression and lung cancer surgery/chemo in 2017. I am not a candidate for transplant.
After reading all the posts about Laser Therapy, I have hope that being part of your study might slow down progression of my IPFB and positively affect the quality and length of my life. Would you kindly send me the paperwork I need to complete for your consideration of me being a participant in your study? I am prepared to obtain the results of the two tests you need to be sent to you with completed paperwork. I also would be so grateful for your help in finding a Dr. or other health care provider in the Pittsburgh (eastern near Monroeville) area.
Please let me know if you have any comments about my plan and/or additional steps I need to take to make this happen for myself and others who have our disease.
Please know that your readiness to spread the word by building a platform that will create active interest and excitement in the minds of those to whom it is presented speaks to me to the extent that I want to do whatever I can to help get things moving. That is, after beginning Laser Therapy…
I get a bit carried away when my enthusiasm is at the fore as you have probably noticed…it has been a very long time since it’s been awakened!
I look forward to your response to my desire to be a participant in your very important Lazer Therapy Study. Thank you, thank you, thank you for spreading the word to me. God bless you!
Marsha Harris 1100 Penn Center Blvd., Apt. 910, Pittsburgh, PA 412.390.4189
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Hi Marsha,
Thanks so much for joining the forums and for getting in touch with us. I am just doing to tag @drandyhall to ensure he sees your note and I am confident he will reply as soon as he can. I would imagine you’re anxious to get in touch with him, so I hope my tag helps him see your note.
Take good care, and I look forward to getting you know you a bit more throughout your forum contributions. Please feel free to write us any time 🙂
Charlene.
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Hi Melissa – Mom had a very serious fungus infection in her lungs and towards the end, she rode around in the house on a scooter like a proud Harley biker – O2 tubes and all. So one time I took her to a Wallingford Crystal Store ( and took the light-weight scooter). When she got inside she was riding the narrow aisles like a two-year-old running the playground. I was scared. That stuff was expensive. – Steve
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Hi Steve-
Love the story! I am thinking I should invest in something motorized! Would be great for yard work, but then again, I can use my ride on mower! It is not just for cutting the grass – motor over to one flower bed, clean it up and on to the next.Would also be helpful with yard decorating for the holidays – just throw decorations in the cart and set them up where needed. I would consider a hoverboard but my coordination leaves a lot to be desired. We survive with creativity and a definite sense of humor!
Melissa
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Hello Marsha,
The first laser I found in Pittsburgh is with the Pittsburgh Pirates. Most all pro sports teams have Class IV lasers. Doubt they would see you. However, the good news is that there are a couple more near you. Laser Pain Relief Center, ph: 724-327-1220, and Consales Chiropractic at: 412-678-9123.
Speaking of the Pirates and pro baseball, most all pro teams, baseball and football have Class IV lasers. I have seen a pitcher for the New York Yankees. My laser saved his career. In fact he is on my chiropractic site helping me demo a muscle release technique that I researched in my office. I created my manual from this research called CLNRT, or Cranial Laser and Neurolymphatic Release Technique.
The initial paperwork for the laser research study is on the ipflaserstudy.com website. If you fill that out, then provide copies of the PFT’s and copies of your C/T scan reports we will have you enrolled in the study. I want to thank you SO MUCH for your willingness to participate!
Blessings,
Andy
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I think we finally resolved the issue of replies / correspondence between yourself and Dr. Hall. Were you able to see his response to you above? 🙂
Charlene.
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Hi Marsha,
Your last post seems to have vanished. But wanted you to know I had a long talk with the doctor today. He is doing some research on IPF, and we discussed at length the treatment protocols. He has been in practice 41 years, just 3 less than me. Very friendly and a nice man. He did mention that some manipulation of the thoracic spine may be in order to help ‘loosen’ the chest walls. If you are not comfortable with that then simply decline. I do however think it could be helpful, but we really need to concentrate on laser. He knows exactly what to do with the laser.
Andy
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Hi, Dr. Hall and thank you for your feedback on your call with Dr. Cebek. I have no problem with having my thoracic spine adjusted. And I agree with you, he seems to be a kind man. I will call him on Friday for information about the cost of treatment and how many times a week I will be treated.
Question: My most recent tests were done around 2 years ago. I have an appt. with my Pulmonologist this Thursday and will ask her to order tests that are up to date if you prefer that the results I send you are current. My latest CT results are from 3 months ago. Will you need more current CT results?
You have been so attentive and helpful to me! I am so grateful to you. Thank you! Marsha ?
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Wonderful Marsha!
Yes, I think things will go very well with Dr Cebek. A new PFT would be great, and copies of the first ones would be great as we can get a baseline. The CT scans are actually pretty recent and a new one is not really necessary at this time. Copies of any previous ones again will help establish a baseline and would be very helpful.
I find that with my chronic cough, doing my job at the office that is physical, wrestling my snow blower and shoveling makes my thoracic spine and ribs get sore and tight and periodic adjustments give me some relief. Dr Cebek was very interested in doing this with you, but I want you to be comfortable with it all. I think it really is a good idea, as I said , very helpful for me.
I’m excited to see you begin this journey!
Andy
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Greetings, Andy! Thank you for your feedback relative to your conversation with Dr. Cebek. I, too, feel he is the right Dr. for me. I just called him to ascertain the cost of my sessions and adjustment of my thoracic spine. He was with a client and will call me back sometime this afternoon!
Yesterday I requested the results of my original and my latest CT scan as well as results of my first and my latest PFTs. As soon as I receive them I will fax them to you and submit my registration to you online. Does that work for you?
I certainly hope your snow-shoveling days are over and the temperature has risen enough that you can actually enjoy your beautiful outdoors!! I’ve never mentioned that I lived and worked in San Francisco from 1979 to 1989 and still feel enamored when I even think about the richness of the Bay Area’s outdoors. I could go on and on!
Dr. Cebek just called me back. His rate is $60 per treatment and his plan is to do 3 treatments Week 1, 2 treatments Week 2 and 1 during Week 3. He added that if treatment doesn’t show any benefit by the 4th week, he would stop future treatments. I’m not sure what I think about his plan. Do you think it’s ok? Thank you for your kind guidance. Blessings,
Marsha
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Hi @marshaharris,
Is this the post you were hoping @drandyhall would see, and hopefully contribute his thoughts towards? It sounds like it might be and it might mean I’ve finally tracked it down. 🙂
Let me know and if not I’ll keep looking. Thank you so much for your patience with the issues we’re having with the site, and I am truly sorry for the frustration it is causing people. I’m trying to get to the bottom of it as soon as possible.
Charlene.
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Hi Marsha,
Please do keep us posted on how things go for you if you wouldn’t mind. I’m curious to hear, and very happy you seem to like the doctor able to help you with the laser therapy! I hope your appointment went well today (if it was today, as opposed to next Thursday) and looking forward to hearing how laser goes for you. Tis’ almost the weekend, thank goodness 🙂
Talk to you soon,
Charlene
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Dear Charlene, I have sent several posts recently, and they have not shown up on this thread. Also, I asked Andy, John and Steve if they were on any oxygen, but none replied. Am I doing something wrong?
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Hi Lynn,
I can’t speak for the other guys, but I’m not on oxygen. I don’t check it often because it is so consistent. It usually runs 97-99 at rest. When I was at the pulmonologist in October it was 99, he mumbled that it was better than his and he doesn’t even have any lung issues.
I too have had posts that didn’t show up, like today when I responded again to Marsha. I guess we just have to deal with a few hiccups sometimes……
Andy
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Hi @lynn-schmitt,
I don’t think you’re doing anything wrong, I see most of your posts – or at least, I think I do! 🙂
This weekend the forum seemed to be having some issues with ‘flagging’ certain posts, requiring me to approve or deny them, presuming some of the replies were spam. Once I safeguarded them, the issue seemed to be resolved but I was a bit behind on replies/approvals this weekend due to a head cold and feeling quite under the weather. Turns out, WordPress which is the platform this sites uses on the backend did a major update over the weekend, which could explain some of the hiccups! It looks like Andy and John replied to your post about oxygen now, were you able to see them?Thanks,
Charlene.
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Dr. Hall, as I told Charlene, I had (2) 9 minute treatments
On my upper and lower left side. Tomorrow we do the same to the right. Do you think this is too much?
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To Charlene, Andy, etc all,
I would like to hear from all participants whether or not you have scarring. Maybe this makes the difference in how well the laser therapy works. Any ideas on this?
Dr. Hall:
Also, I had two treatments on my back side today (9 minutes each). Tomorrow we will do the chest. I will have spent $270 after tomorrow. If there is no improvement in my walk test on Thursday, what would you suggest ? I don’t want to throw money away on a lost cause.Kind regards, Lynn
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Hi Lynn,
Nice to hear from you and hope laser continues to go well for you. Are you noticing any difference at all? Likely too soon to tell but I am always curious. I do have scarring, mostly progressive from the lower lobe of my left lung upwards and my left is far worse than my right unfortunately. This is what also causes cardiac issues for me. I can’t say how bad compared to others as I don’t know anyone else in person with IPF, and unfortunately it seems to be progressing enough that changes can be seen on my bi-annual imaging. Not sure if this helps with your inquiry 🙂
Charlene.
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Let’s be careful here, boys and girls.
An anecdote regardless of how hopeful or miraculous it is is just that, an anecdote. Citing a “Top Scientist” doesn’t make it a peer-reviewed science paper either.
Be wary.
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Mr Dwarbeck, I assume it’s mister and not doctor, I totally agree with anecdotal evidence. When I was first diagnosed with IPF, I started laser therapy right away. 4 of the 5 subsequent PFT’s improved and the one that didn’t improve showed no worsening. I thought maybe I was just lucky. Maybe I was one of those patients that that had a slower progressing IPF than most. After a post on another site describing what happened with me, other IPF patients contacted me, and they improved also. All anecdotal…… And then even more patients with IPF tried laser and they all improved also. When you hear the comments from all the treating pulmonologists of those IPF patients that IPF NEVER improves, and it’s happened over a dozen times, you can no longer call it luck or co-incidence. John Styles who first posted on this forum could not walk 100 feet without oxygen. He reports to me he is now walking a mile and a half with no oxygen. He improved. Awesome! But anecdotal……!!!
Scientific studies usually start because of ‘anecdotal evidence’. And this is EXACTLY why we are doing a study on laser for IPF. Anecdotal doesn’t cut it. I’m no stranger to peer reviewed journals. No stranger to research either, have done some clinical studies in my own office and helped with thousands of dollars of my own money to help fund other studies. Our study is to be well designed to meet peer review requirements. Even the Egyptian study for laser for COPD was not well designed, in fact I honestly have more questions than answers after reading the study. Did they get good results? Yes. But I still have a lot of questions like how were the patients a month later? A year later? What other objective findings were there besides a 6 minute walk test?
If you feel too wary, this may not be something you should do. But I don’t think we have time to waste. This is a serious and deadly disease. The sooner we have ‘proof’ the better. Like I said, even with the anecdotal evidence, anecdotal just doesn’t cut it. This research project is important so it’s NOT anecdotal anymore.
Dr Hall
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Andy,
The cold laser fee is $45 for a 9 minute treatment. I have 2 each day. Tomorrow will make $270. If this is excessive, please find someone else certified to give the treatments. I was resigned to maybe paying $90 per week. But I really can’t afford to pay $90 per day! I don’t feel any better yet.
Let me know what you think.Lynn
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Hello everyone, let me do some updates. First we are fortunate Dr Hall has taken the time to help all of us. Now let me say the best evidence we have is Doctor Hall who has been using the laser with no progression and has several people including me who are doing laser Dr Hall is a real pioneer and caring person but I think the more people who want to do this need to research for themselves. That is where I discovered the Egyptian study done in Cairo and published last year. The scientist who did the publication is Mr Sayed with research center at Georgia Tech. He had no funding for the study but he did study using laser on 30 people with copd and another 50 patients with asthma and 98 additional children with asthma and 31 patients with different lung diseases including interstitial lung disease. The study was short and was for 2 weeks and treatment 5 days a week. The remarkable thing about the study was every patient improved and no issues with side effects. You may ask who is Mr Sayed, he graduated for Florida State with a doctorate degree and did post graduate study at Yale, Harvard and Cal Tech and has been recognized by George W Bash and Obama in 2011 said he was one of the top scientist of the decade. Now we have Dr Hall who has teaches laser therapy and discovered it can stop the progression of the disease and has myself and several others doing laser therapy. As for my self I did two treatments the first week and 2 and week 3 and 4 and plan to continue with 2 treatments for another two weeks and then will go to one a week. I saw my general doctor yesterday to go over my blood work and he noticed my oxygen saturation was 96, last visit it was 92. I just returned from walking 1 1/2 miles with no portable oxygen, before I had to use a inogen g3 on setting of 5 and had to stop 6 times because my saturation dropped to 78, now they stay above 90. I do 9 watts for 5 minutes on front of each lung and 5 minutes on back for a total of 20 minutes. You can find chiropractors who use lasers by google chiropractor laser therapy and putting your city in . Good luck to all, it may not be for everyone but time is not stopping and this disease is nasty. I was planning my obituary but now I am planning some vacations. What a change, my hats off to Doctor Hall. Let me add one additional thing, the day before I found Dr Hall I prayed and then the next day I changed search engines temporarily to bing.
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Let me add, when I was searching for someone with a class 4 laser I called a holistic center that wanted to start me out on 2 1/2 watts and increase 1/2 watt every week. I then found a chiropractor who agreed to treat me, the visits are $45 but I receive a discount for paying for 8 visits in advance. My chiropractor uses a light force ( brand recommended by dr Hall ) and each session is 20 minutes. As far as wanting to see more research on this therapy, guess what? No money in it for the drug company’s who do most of the research. I still have issues with hills and lifting, but I am improving. There is research where the laser was used on mice and on a westie dog, but you can not compare animals to humans.
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Hello Lynn,
A few things to consider. I know you ‘don’t feel better yet’, but it is VERY early on in your laser treatment. It could be a long while before you ‘feel better’, and you may never feel better but do better with walk tests or Pulmonary Function Tests. You may not see improvement with the walk test tomorrow either as again, it’s just too early into treatment. However, of course I certainly hope we see some improvement with the walk test. One of my other concerns is that the Physical Therapist is NOT following protocol for treatment. It’s really not rocket science. If he has the protocol, it’s very easy for a person trained in Class IV laser to follow. I am frankly very disappointed. Protocol DOES NOT include going back 2 times per day at $45 each time. I’ve never heard of such a thing! Let’s touch base again after your walk test. I just have a bad feeling about where you are going and how you are being charged. Something is not right here…….
Also, you have HP and not IPF. I don’t know of anyone with HP that has undergone laser therapy and heaven forbid, it might just not work for that. We won’t know for a while. But Lynn, I just don’t want you going broke in the process seeing someone that does not follow protocol and charges the way he is….
So, again, let’s touch base again after the walk test tomorrow.
Andy
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Hey, Dr. Hall, John, Charlene, etc all,
I like this physical therapist, and I think he is doing his best. However, he has never used the laser for treating IPF or HP. I think I need for Dr. Hall to research chiropractors in Lexington, Ky because I cannot continue to pay $270 per week. I can swing $90, if this helps at all. I will be in touch after my appointment tomorrow, then we will be out of town for the weekend. I have felt short of breath today, but that may be anxiety kicking in. I am always nervous before appointments. Thank you all for your support and advice. Lynn
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Just a thought. I have HP too and I read somewhere that one of the differences between IPF and HP is the location of the ground glass opacity. I know that mine is in the lower lobes. Might that impact how the treatment is performed? My appointment is in 2 weeks and I’ll ask Dr. McGuinness about that. His office said that he has experience treating lung disorders, so I’m hopeful. What do you think, Dr. Hall.
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Hello Terry,
No, I don’t think it will impact how the laser treatment is performed, but of course you should discuss this with Dr McGinnis. As I’ve said, I’ve known him a long time, he has LOTS of experience with lasers and credentials other doctors for laser use. We often sit together at Chiropractic seminars and I’ve told him about the study that we are doing. He knows about it and is very interested. Dr McGinnis thinks ‘outside the box’ . I think the world of Dr McGinnis!
Andy
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I have ground glass at the bottom of my lungs, and I was down to 35% fcv. I think the ground glass may have been antagonized by the 3 ct scans I had last year because they did not find the ground glass until November, I have decided not to do any more ct scans. I f you take into account the Egyptian study it seems the lungs respond to most lung disorders when treated by laser. Just a thought from my chiropractor, you may not want to use laser if you have cancer, no research but the laser speeds up healing and may speed up the cancer, as for me I do not have cancer at this time but I thought about it and did the math, at the rate my lung fcv was deteriorating I thought I would survive longer by doing laser. I think Andy recommendation on type of laser and how long to use the laser and wattage is critical, again I had a holistic center want to start me at a low rate, if I had done the low rate I may not have had the response I had. When I discussed with my general practitioner I was feeling better he told me that is subjective but the increase ability to walk is real and he saw for himself my increased saturation level, he was thinking of recommending to another patient she find a chiropractor with a class 4 laser for her pulmonary fibrosis. I am paying $40 a visit, the chiropractor I see offered me a discount if I paid for 8 sessions in advance, his office policy, other wise I would be paying $45 a visit. Soon I will be on maintenance at one visit a week with a cost of $40-45. Andy results seem to suggest the laser stops the progression of the disease. We all have to be realistic and stopping progression of the disease is huge but as far as healing I do not think it will help. We live in a capitalistic, society, nothing wrong with that as I did well in the real estate business and now I am retired. If we wait for research into the laser to happen it will be after we are dead and gone. Thankfully Andy is trying and on his own with no funding. If the laser was a drug at a cost of $8,000 a year per person you can bet that the drug company’s would be all over it. Few options are available but I like the laser option.
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Morning John!
I would like to make a couple of comments. As far as the laser for cancer, could not disagree more. Minimal research in the US, but hundreds of studies in Europe. I personally met years ago some of the researchers and the results are outstanding. I was credentialing two osteopaths in Nevada, showing them how to apply laser for musculoskeletal problems, near the end they said “great doc, but the truth is we are going to use it primarily for cancer”. So I programmed the laser for treating cancer for them. It works!
One of the important photochemical processes that happens with laser is stimulation of ATP production. ATP is what the cells derive their energy from, but it’s also what damaged cells use to heal themselves. So, I really believe that for that reason some healing can take place in the lungs.
I’ve been thinking that what I would like to do is instead of just answering questions from everyone, is write about ALL the things that the laser does that is beneficial to lung conditions. Some is a little technical, but there are a lot of very smart people on this forum, and it will help with everyones understanding….. Would like to do it today, but I have to go to work early to catch up. Had to cancel my day at the office on Tuesday due to the snow storm, and I am going to have a crazy day today trying to see Tuesdays patients and today’s patients and get caught up. I’ve never had a ‘snow day’ in all my years of practice. Wish me luck, I’m going to be unindated today!!!
Blessings everyone,
Andy
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Hi Andy,
Thanks so much for being so thorough and generous with your responses to everyone’s questions about the laser therapy. We know you’re busy and appreciate it very much! Please don’t feel pressure to spend time online after a long work day, I want to ensure you’re not wearing yourself out as I know many of us are eager to get answers and ask your advice on this site. It’s okay to take some time and recoup after the day. I’ve have to do that the last few days, and apologize I haven’t been online as much engaging or responding to folks who are writing. I hope to be more present after tomorrow, as we’re merging databases at work right now and it is unbelievably busy, especially the mental tasks and trying to remember, problem-solve through the changes. Sadly, this is a side effect of IPF that I hate: the invisible memory/cognitive struggles. Do you get this occasionally?
Thinking about your idea of writing out all the benefits of laser therapy – if this would be easier for you to put in a word document and email it to me, I can convert it to PDF and post it for the forum to see all together as opposed to individual responses? Let me know if I can help with this as I know that might streamline some responses for you. Great idea, if you have time of course 🙂
I hope the weather has calmed down a bit there for you? Take care and hang on one more day, then it is the weekend. Thank goodness tomorrow is Friday!
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Good morning Charlene,
Yes, didn’t get home after work until nearly 9pm last night. I also have a veterinary side of my practice that I do after I get done with my human patients. Had two dogs to work with last night. A Cocker Spaniel that was paralysed for 4 months before referral to me. We got her bowel and bladder control back after the 2nd adjustment/laser treatment, and now she is up and running, chasing wild turkeys and stuff! The other dog last night was a very large Doberman that was referred by UC Davis for laser after a partial knee replacement. We worked with this dog 9 months ago, same thing, partial knee replacement. Good success with the laser but the crazy dog blew out it’s other knee, so same proceedures and he is responding well again. I love working with all the animals!
Anyway, I’ve spent the last 2 1/2 hours responding to emails from doctors and patients, locating providers, etc. I’m all caught up! I’m trying to pace myself, but I found that I can’t let myself get too far behind either, it just creates more stress.
In answer to your question, yes, I have found that my spelling has gone south…. never had a problem with it before…. I thought I was just getting old and maybe this happens, but I think you may be right about the association with IPF. Not sure how that works, but…….
I’m going to start the essay on laser for lung issues this weekend. It will probably take quite some time to complete, but I feel it will be helpful for everyone. And I appeciate the sending it to you on my Word program and you can deal with it and place it on the forum where you think it may be appropriate.
I’ve been wondering how you are you doing. Have you recovered from the head cold? How are you feeling?
I’m kinda mad at the weather guy. He is precicting another 15 inches of snow here this weekend. Not supposed to start until late today, but I’m really not looking forward to more of the white stuff!
Andy
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Hi Andy,
Thanks so much for getting back to me – sounds like your day was quite hectic. Hopefully you were able to get some rest last night and recoup a bit today. The practice with animals sounds amazing, I am a huge animal lover and so glad you’re finding success with laser treatments to help these dogs. I don’t know what I’d do if something ever happened to my dog, so I am grateful for the time, energy and knowledge you contribute to helping heal them with laser therapy.
I completely understand the concern about not letting yourself get too far behind on replying to people emailing you. When that happens with the forums, it can take days for me to catch up, although I do consider it a privilege to be able to do so. Do pace yourself though, I want to ensure you don’t burn out and folks typically know you will get back to them as soon as you can. You always do and for that, we’re so grateful!
Unfortunately yes, I think those cognitive effects of IPF are very real as much as I don’t want to admit they are. For me, it is mostly memory issues and having process-related stuff. I tend to need things repeated a lot more often than I’d like to admit. I wonder if it is the chronic under-oxygenation?
I will happy disseminate the information on the laser that you’re writing up. It means a lot to all of us, and I’ll make sure it gets onto the forums in the most helpful way possible, and read the maximum amount of people who want to see it. Please ensure your information is on it, so people can give credit AND thanks where due!
I am thankfully nearly on the mend from my head cold, yes. Thank you so much for asking – very kind of you. I have a bit of lingering congestion, but otherwise I am on the mend. My sinuses tend to be a bit sensitive still but Ill definitely take that over how crummy I was feeling. Can’t believe how long it is taking me to bounce back from this though.
Stay safe in the upcoming weather storm. Everything here is ice at the moment, and looks like it’ll be covered in snow over the weekend so I am glad that I’m not planning on doing too much.
Thanks as always for writing, and I hope you have a nice weekend. I’m sure we’ll catch eachother äround”on the forums this weekend 🙂
Take care,
Charlene.
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Thanks, Dr. Hall (Andy),
I was just thinking about your comment about the differences between HP and IPF that may impact the success of laser therapy. I’ve read articles about a significant portion of people being diagnosed with IPF who really had HP. My pulmonologist says he’s only had one, but has sent several over to UCSF for reevaluation. I know that the drug treatment is different too. So I can see why you want to keep your study focused on IPF.
But, I’m still going to give it a try. Won’t be able to do additional CT scans, after the one I’m having next week, or PFTs because I just had the annual ones done. But I can do my own 6 minute walk and track my blood oxygen levels to see if there are any improvements.
Fingers crossed.
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Lynn, I was diagnosed in 2007 and went on oxygen in 2012. Yes, I have scarring and was told I should have a transplant within 12-18 months at that time. Didn’t qualify because I’m quite obese. Guess that doctor was wrong cause I’m still here. PFT stats have always been low (45% range for FVC, 25% range for DLCO), but stable. But in Aug, 2018 they dropped to 35% and 19%. Scared the heck out of me. I had already been dieting and lost about 80 of the 100+ lbs. I gain when on prednisone. In Oct, I started a medically supervised diet and have lost another 40 lbs. Have another 120 lbs. to go.
I’ve already seen my oxygen needs go down. I’m hoping that the laser treatment and continued weight loss will lower my oxygen needs more. I don’t expect to get off oxygen. I’d just rather be around 3lpm than 6lpm.
Start the laser treatments in about 2 weeks. Will let you know how that goes.
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Hi Andy
Good to here you have herd of good results for cancer, my chiropractor did not now for sure, maybe he was just being cautious. I am still doing good, just got back from my walk, still doing a mile and half with no oxygen. Thanks for all your input and guidance, without you I would have not started with laser. I feel for you with snow, here in Florida we are 80 degrees today.
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Embrace that weather John, I am so jealous!
Here in Canada, we are on day two of solid freezing rain. Everything is at least half an inch covered in ice. Although it is pretty, it is nearly impossible to walk anywhere and it took my colleagues over 30 minutes to de-ice their cars this morning. It’s unbelievable since it was +8 degrees celcius on Monday, but -35 last week (one of the coldest days on record for the Province I live in). Enjoy the walking, that must feel so nice to be in the sunshine and warmth 🙂
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Hello, all:
I visited my doctor at U of K today. I had breathing test, chest x-ray and blood work. Everything is stable. No improvement, but no deteriorating either!
Dr.Hall, when you get the time, would you please see if there are any chiropractors in this area (Lexington, KY). I am not going back to my PT because I think you are right. He is not following protocol. I am going to call and tell them I can’t afford to keep going. Please contact me if you find anyone That you would recommend.
Nevertheless, I am pleased that I am staying stable.
John, do you think maybe you received such good results because you had interstitial pneumonia, as opposed to pneumonitis? Just a thought.
Thanks to everyone on this forum. It is so nice to be able to correspond with people who know what you are talking about!
Regards, Lynn
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Hi Lynn,
Thanks for reporting back on how your appointment at U of K went today! I am so thrilled for you to read that your reports showed no progression. I know you were worried about this, so I do hope it brought you some relief to see that things are stable. I am happy for you!
I hope you can find someone recommended for laser if you think you want to pursue it, I’ll keep my fingers crossed for you.
Thank you for being part of the forums too Lynn. I agree, it is so nice to have a platform to connect with such wonderful people, and with those who truly “get it”. Take care and chat with you soon!
Charlene.
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Hi Lynn!
I’m so pleased that your walk test showed no decline. Wonderful news! How have you done in the past with it? Similar in that there was no decline? Or is this the first with no decline?
I have found another laser provider for you in Lexington. I would suggest you contact Today Chiropractic at 859-278-8000. He has a Klaser. Was the Phyiscal Therapist’s name you have been seeing Steve?
Blessings to you Lynn!
Andy
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Hello, Charlene,
I want to thank you for being so prompt with your replies. I am going to try the chiropractor that Dr. Hall recommends, and hopefully, after a few weeks, I will see some results. We all must keep in touch and rely on each other to find any new solutions or treatments that might work. There were no clinical trials at this time. It is quite sobering to think that you have probably 5 years left to live, at best. Here’s hoping and praying for good results for everyone on our forum!
Have a nice weekend,Lynn
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Thank you for your recommendation – I will call first thing Monday. I expressed myself wrongly when I said I did not feel better. I feel good, normal except for tiring easily. I guess I expected to feel this surge of energy, or something similar. You warned me about expecting fast results, but I still hoped I could feel some difference.
Thank you for all of your help to me and all who are reaching out to you. Time will tell, so I am going to hope for the best! I will let you know.Lynn
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Hi Lynn,
Thanks so much for being part of our community, and sharing in discussions about these alternative therapies! I am honoured to be moderating this forum, and love being able to reply to everyone in a prompt manner – I also learn so much from everyone 🙂
Glad you’re looking into the other recommendation from Dr. Hall and I’ll keep my fingers crossed that you do indeed see/feel some improvements within a few weeks. Keeping you in my thoughts and hope you have a wonderful weekend!
Charlene.
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Hi Lynn, I think my results were due to the laser but staying with Andy’s recommendation of class 4 laser and my chiropractor is using a class 4 light force laser and is doing 9 watts and doing a total session of 20 minutes, with 5 minutes on each lung on front and 5 minutes on back. Andy stressed the importance of the class 4 and Andy also noted the Egyptian study may not have used a class 4. I have done 4 weeks of treatment and next week will be week 5. I did 2 treatments the first week and 3 treatments week 2 and 3 and 2 treatments week 4 and the next few weeks will stay with 2 treatments and then one treatment a week. I still get out of breath on a hill or bending over or walking fast. I have been walking for 30 years and when I got this disease usual intestinal pneumonia a form of polminaary fibrosis I was walking 2.75 miles in Oct 2017, then the end of 2018 I was down to 1 mile with oxygen on a setting of 5. I get a boost from being outside in the fresh air. I can walk indoors and may need oxygen for an extended walk. I feel better and breath better. I think the expert on the laser is Andy and my chiropractor is not at Andy’s recommendation of 10 watts but I am doing more sessions in the beginning. I would say carefully make sure you stay with Andy’s protocol for laser.
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Hi Steve I do not experience anything different. I have noticed like the disease being real slow the progress is slow. What I did notice were increased saturation at times, again Andy is the expert. I may have customized his suggestions to the 20 minute session. I think the goal is no progression of the disease, what else we get is a bonus. I have pulse oxygen meters for my finger and I am always watching my saturation’s because I do not want to damage my heart. What I was seeing prior to treatment was readings of 89 to 91 sitting, now I am seeing readings of 91 to 93 and sometimes up to 96. No progression of this disease is the real goal.
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Thank you, John for your imput. I can sit without oxygen, and walk slowly around my house, but need O2 for any exertion. I am going to call the chiropractor Dr. Hall (Andy) recommended and find out if he has treated this before. I can’t afford the pt anymore. I am hoping for some good results! Best of luck to you!
Lynn
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Ron,
I can’t find the post you did about your pulomonolgist in Dallas. She is amazing! We had a very long discussion on the phone. I agree with you, I would consider her to be one of the top in her field. We talked about many of the photochemical processes that take place with laser and her willingness to ‘think outside the box’. She has no place to abide with the ‘medical model’ and is totally open to laser or anything else that will help her patients. I have never been so impressed with a pulmonologist. Sure wish we had more like her. In fact I wish she was close enough to be MY doctor. I would switch in a heartbeat!!! You are very blessed to have her as your pulmonolgist, in fact I’m jealous…….
We need more doctors with her education and willingness to help patients any way possible. It was an absolute pleasure speaking with her!
Andy
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Hi Andy,
I know your reply was to Ron, and so sorry for intercepting – I just wanted to see if I could find Ron’s post as a “moderation required”, and approve it to see if I could make it visible for you. I don’t see anything outstanding, so I hope his post wasn’t lost! Sounds like Ron is in good hands, which I am very happy to hear 🙂
Take care all.
Charlene.
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I have not read through this entire thread, so if this has already been posted I apologize. A quick way to search for a practitioner who uses K-Laser (one of a handful of class IV lasers) is to go HERE. And when you speak to the doctor and should they not know anything about IPF and laser I would direct them to Dr. Hall’s work.
As I said before, I used laser in my office for quite some time and had some phenomenal results, not IPF related. I need to state that I no longer have my laser, due to not being able to work as much while my father was ill, sadly I had to sell it as I still owed on it. That said, it is an extremely powerful and versatile treatment for hundreds of conditions and I would LOVE to see you all find someone who would be willing to treat you and to make it affordable. It sickens me to know there are doctors out there gouging patients!! If you are in the Portland area, where I am at, I know many doctors here offering laser and I would be more than happy to connect you with them, and or talk to the doctor as well.
I am so thrilled to see this thread and what Dr. Hall has been doing with his work.
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Hi Megan,
Thanks so much for getting in touch with us, as always it is lovely to hear from you! It is also so nice to hear that you also had success in treating patients with laser therapy, albeit not IPF-related. I sure hope folks find this helpful if they investigate it and determine it is something they’d like to learn more about. Wouldn’t it be so great for everyone to have the experience John did with his laser treatments? I sure hope people do!
Thanks also for posting the hyperlink that people can just click on to locate a physician using laser therapy in their area. This will be a big help!
Take care,
Charlene.
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Dear Dr. Hall,
I have a consult with Today Chiropractic tomorrow. I need to find out the treatment fee and the protocol of treatment. Thank you for the referral.
My PT is named Steve – how did you know?
I will respond with the results, if I have a treatment this week!-
Hi Lynn,
So glad you are making a change. I will be interested to know what the charges will be with the Chiropractor.
When I did a search for you, I saw the PT with the name ‘Steve’. I don’t know why he wouldn’t follow protocol. None of this felt right to me. I have concluded though, that PT’s seem to want to charge more for the very same service that Chiropractors do. I have spoken on the phone with countless DC’s over the last 3 weeks, and I find that most are excited to begin work with an IPF patient even though they have never treated it before. They are a compassionate bunch. They all have seen first hand what laser has done for all of the musculoskeletal conditions they have treated, and they all feel that it should work well with lung issues as well. I appreciate their enthusiasm! I will be anxious to hear how it goes for you!
Andy
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Hello Dr. Hall,
As usual, I am in a quandary…I went to Today Chitopractic this morning. They praised the K Lazer. HOWEVER, the person I first consulted with insisted that they only use 5 watts on soft tissue. He said it went deeper and spread out. I went ahead and had one treatment, but it did not feel warming at all. I hope it warmed down deep in the lung tissue. I only paid for one visit @ $50. I could get 5 treatments for $225-$45 per treatment, or 10 treatments for $400-40 per treatment. I made an appointment for tomorrow, but I wanted to see what you recommended. I kept insisting that you said 10 watts, ut they insisted that is their protocol. WHAT DO I DO?
Sorry for being so troublesome,Lynn
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Hi Lynn,
Man, I just can’t believe your lousy luck…….. I’ll tell what I would like to do. Please give me your email address and I will forward the essay I recently wrote on laser for lung conitions. On that, I will also include the treatment protocol for laser treatment. If the doctor has a problem with it after that, I would like to discuss it on the phone with him. The good news is that the fees seem much more in line, esp with the package of 10.
I just got home for lunch, the phone lines are back up and I have internet again! The snow storms here have created lots of power outages, can’t wait for spring!!!!!
Andy
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Hi Andy,
I am happy to see your post on the forums – I wondered how you were making out with the recent storm! Glad to hear you’re safe, and that your phone and internet is back in working order. Our streets are a mess again here too, filled with ice and snow. It was another snow day here, everything shut down ahead of the freezing rain. Hang in there – spring will be here soon!
Charlene.
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Dr. Hall, today Chiropractic has an e-mail address. [email protected]. Perhaps you can e-mail him your essay and reference me.
Thanks,
Lynn-
Hi @drandyhall,
Just wanting to make sure you see @lynn-schmitt’s latest post, with both her email and the email of the service provider. I know you’re busy, so I wouldn’t recommend you want to start connecting with others’ service providers as you could quickly become inundated with requests given the number of people on the forums. Just a suggestion, but I know you can likely speak for yourself too so I don’t want to over step. Lynn, they also may not speak to Dr. Hall without documented consent – just my healthcare brain kicking in here. It may be best for you to connect with them, and refer them to Dr. Hall if they have further questions. If you’re a paying patient, which you are, they should be bending over backwards to help you 🙁 I’m sorry to hear this hasn’t been your experience!
Hang in there.
Charlene.-
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Hi Charlene,
The good news is I have power back on. The bad news is I will not have internet service for a week according to AT&T. There are lines down everywhere and the winds are gusting to 50mph. Spooky watching the pines all swaying so hard looking down the canyon from my house on the ridge.
My son, with the computer business has fixed me up with a ‘hotspot’, so I can now use my computer, but I am now over 3 days behind. I have over 30 emails to reply to and 5 doctor consults to do. I feel very overwhelmed right now. I have the morning to do some catching up but need to work this afternoon and won’t get home til 9 tonight. The weather is supposed to finally subside Saturday night, but we are expecting an additional 2 feet of snow in the meantime.
So, I feel awful about not getting back to everyone yet, but it will happen. Just going to take some time.
I know you too are feeling overwhelmed right now, and know that I’m keeping good thoughts for you! Thanks for all your dedication and hard work!!!
Andy
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Hi Andy,
Thanks so much for getting back in touch with us. I am thrilled to hear the power has returned – what a tough couple of days for you, and so sorry to hear of what-sounds-like such a mess of a storm! Do you have lots of back up generators for the important things like heat, refrigeration, etc? I hope so! PLEASE take your time in replying to the forums. I know you are so dedicated and passionate about helping us on this site but prioritize your own needs first, and we can wait. I know the feeling of being overwhelmed with emails, etc. so it isn’t worth the stress to put pressure on yourself to reply to everything timely. Take your time and take care of you.
I am still working hard on a resolution to the forum issues we’ve been having. Keep your fingers crossed it gets easier to navigate soon so all of our wonderful members don’t find it so difficult to move around this site. It sure can be tough!
Hang in there and I’m thinking of you!
Warmest regards,
Charlene.
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Hi Lynn,
I hope the essay and treatment protocol was helpful for your doctor. As I suggested, he could contact Dr Phil Harrington, the medical director at K laser for reinforcing why we use 10 watts. Dr Harrington has reached out to me and he and his technical staff are working on a more perfect protocol for treating IPF. I will let everyone know when that is completed, but in the meantime we are using the current protocol. The K laser people are very excited about laser for lung issues, they are hearing from so many people that have responded, and also many dogs with IPF also.
Andy
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We’re so thankful you also put us in touch with @drphilklaserusa, @drandyhall. Much appreciated and welcome Phil! 🙂
Cheers,
Charlene.
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Dr. Hall, in case my message gets cut, my e-mail is [email protected].
The chiropractor at Today is Dr. Leo Boisvert. He did not treat me, just spoke. The young man with whom I consulted was named Lee or something similar. He claimed that when they programmed the laser and put in type of tissue (lung) it was set to 5 watts
Thank you for your help,Lynn
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John,
My wife is just starting laser treatments for IPF and have been getting good guidance from Dr. Hall. Wondering what exactly are the 35% and 55% lung function test results you had as that is a terrific improvement and there a number of different things measured in lung function tests (FVC,FEV1 and FEV1 ratio).
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Hi @let666,
Thanks so much for writing to John, and sorry to intercept your message. I just wanted to let you know that I am tagging @caneelbay1 (John Styles) in this reply to ensure he sees your note and can hopefully reply. The forum replies to this topic specifically are lengthy so it would be easy to get lost 🙂
Take care,
Charlene. -
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Thanks so much John! Please keep us informed with progress as I hope others using cold laser therapy will also do. This is a very interesting thread and could be the most important one to date.
For those looking for the Egyptian study Low-level laser therapy in chronic obstructive lung disease study referred to it can be found here:
http://www.ejbronchology.eg.net/text.asp?2018/12/3/317/239379
Best wishes to all,
Tony-
Hi Tony,
Yes, isn’t the information that has been discussed on this forum thread fascinating? I can’t believe not only the amount of people who find laser therapy helpful for them in their own personal experiences, but also the endorsements about the work Dr. Hall is doing. I am so glad John brought it up for all of us, and that Dr. Hall has joined the conversation. The forums are very lucky to have them both! Thanks for joining this topic thread and for posting the link to the study, making it readily available to those wanting to read it. I really appreciate it 🙂
Cheers,
Charlene.
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Lynn, you have spent $270??? How many times did you go? That seems VERY excessive to me. Now realize I am VERY reasonable for my laser treatments. I charge $90 for a series of 3 treatments. I can’t believe you have spent that much. I wonder if you were charged excessively for a consult or whatever. Please let me know what the fees are that you are paying. If it is out of line I want to find another doctor for you!
Andy
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Hey John – Our oximeter readings are similar. What has helped mine is serrapeptase and Amla (Indian gooseberry). Amla slows the heart rate 7 – 10% BPM and has increased my O2 about 3 points where it rarely goes below 93. I was starting to notice more chest palpitations and slowed down Amla because I am taking a lot of different supplements and eventually they will slow the heart and increase saturation too.
Serrapeptase may thin the blood viscosity and generally that’s a good thing, unlike aspirin which will thin the blood but may also cause additional bleeding before a wound stops bleeding. – Steve
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Good evening, Dr. Hall,
Thanks for replying so quickly. I know it is midday where you are. I always wanted to live in CA., but with all the flooding, forest fires, and now snow storms, I think I will stay here in the Bluegrass. Although if it doesn’t stop raining, we will have to buy a boat!
I apologize for being so needy, but I am having rotten luck. I never met the main man, Dr. Boisvert, although he spoke in the hallway. I was treated by a guy named Brian, but my consult was with another young man, whose name I can’t remember at the moment – maybe Lee. Although it is a 10 watt laser, he insisted that when they programmed the type of tissue (lung), it automatically set at 5.
My e-mail address is [email protected]. I do not have hope that they will listen to me. I hope this is not God’s way of telling me to quit trying. I am really discouraged and getting “broker” by the day!
I am looking forward to reading your information. Thank you so much.
Lynn -
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Hi John,
Thanks for adding this in. I wonder if others might also be able to ask their service provider/physician for a bit of a discount if they pay for multiple visits in advance? Was this something offered to you, or did you ask? Something to keep in mind for those who are wanting to try the laser therapy and can offer the money upfront for a number of sessions. Thanks for mentioning this – it might be another source of help/assistance for those considering the laser therapy!
Charlene.