This topic has 126 replies, 22 voices, and was last updated 1 month, 1 week ago by Charlene Marshall.

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    • #17924

      We would like to hear how you have done with laser therapy.  Please report after the 5th, 10th, and 20th treatments.  Please report changes in your resting oxygen levels, any change with a 6 minute walk test or other objective test, changes in supplemental oxygen use, and any changes in your quality of life. 

    • #17933
       leontis teryazos
      Participant

      My wife Elizabeth has IPF and started laser treatments on Feb 15 using a class 4 K Laser in Montreal and under guidelines set  by Dr. Andy Hall. I am recording her 6 min walking distance results to see if she is making progress. Just before laser treatments started she was able to walk 247 meters and her heart rate was 107 at end of walk. Today after 11 treatments she was able to walk 364 meters and her heart rate was 97 at end of the walk.

    • #17939

      Thank you for starting us off with the information/collection of laser therapy benefits, @let666. Really glad to hear that she seems to be benefitting from laser therapy! What wonderful news that she can walk a further distance with a reduced heart rate. I hope these benefits continue for her and thanks for sharing. I know lots of folks are watching this site for information about laser, and we hope this information helps them in some way if they choose to consider laser for themselves.
      Charlene.

    • #17955
       Andrew Hall DC
      Participant

      Has anyone heard of Bridge Therapeutics BBT-887?  A new drug developed in Korea, it has shown to remove fibrous tissue in the ‘mouse model’, and they have used it on 23 IPF patients with ‘promising results’.   I just read about it and we may actually be on the verge of a real ‘cure’ for IPF.  The phase 2 trial is starting.  Man, this can’t be approved soon enough!!!

      Andy

       

      • #17993
         leontis teryazos
        Participant

        @drandyhall,

        Also take a look at Lung Therapeutics IPF drug LT1-03. It also looks very promising.

        • This reply was modified 8 months, 2 weeks ago by Charlene Marshall. Reason: tagging
        • #19455
           Denny
          Participant

          The problem is it takes 3 to 4 years to get through the trials and development. One article just came in on TD 139 in which they are doing phase 2/3. IT IS A POWDER NASAL SPRAY THAT IS WORKING ANS NO SIDE EFFECTS. The company is Gallecto and they are doing a clinical trial soon in Europe and North America. Read the article  because it sounds great but 2 years away. PRM 151 sounds good too in a clinical study.

    • #17962

      Hi Andy,

      No I haven’t heard of this yet, but our research/science team at BioNews may be preparing something about it or have heard about it. They’re a great group of folks! Where were the patients located that it was used on Andy, were they based out of Korea or somewhere in the US? Truly just a question of curiosity! I sure agree with you about this not being approved fast enough, gosh, I hope I live long enough to see the day where this disease is cured! Can you share more information about this drug as you come across it? Thanks for bringing it to the forums!
      Charlene.

    • #17975
       Steve Dragoo
      Participant

      @drandyhall

      Hey Andy,

      Yes, I have been in email contact with the group since last September. My last correspondence was in early January where my contact stated they have not started phase 1 trials yet but when they do start phase 2 they will include IPF patients.  That is currently an unknown date- possibly late this year. I have a Ph.D. nurse friend from S. Korea and I asked if she could locate the herb but she was unsuccessful. Need the group’s contact info? Best to you friend – Steve

    • #17990
       Shumita Ralli
      Participant

      Hi All

      Thanks for sharing such valuable information. It’s encouraging to find out about potential cures which are in r&d.

      i read recently that a clinic in Mumbai has had some success with stem cell therapy which helps rejuvenate scar tissue. Sadly my dad’s pulmonologist has advised against this as he’s uncertain about the quality of the research in unknown clinics in India. He has however recommended that I continue to explore stem cell therapy as an option for my dad in the western world.

      if anyone has any pointers on stem cell therapy research, please let me know. I’ll be back in Australia shortly where I will continue to seek out more information. I’ll share in this forum as I find out  more.

      Best wishes.

      • #18018

        Hi Shumita,

        Thanks so much for your kind words, and glad you’re finding the forums a helpful platform to discuss options for your Dad. I’ve been thinking of him this week, and hope each day is getting a little better for you all since the news of his diagnosis… how are you doing?

        Interesting that the pulmonologist encouraged you to investigate stem cell therapy options for your Dad in the western medicine world. Did he/she have any recommendations as to where to look or inquire about this? Ron highlighted the statement on stem cell therapy on the Pulmonary Fibrosis Foundation’s website about exercising caution when investigating this treatment option. It is unfortunate that we have to be a bit skeptical about this option because there have been known scammers out there who take advantage of us with PF. Just something important to keep in mind, but perhaps your Dad’s physician knows of some credible research going on in the areas of IPF and stem cell therapy? Do keep us posted if you wouldn’t mind 🙂

        Thanks again,
        Charlene.

    • #18005
       Ron Johnson
      Participant

      @shumita,

      See pulmonary fibrosis.org under Announcements regarding caution for stem cell therapy.

    • #18019

      Good morning @ronjohnson, yes, an important thing to remember! Thanks for sharing this link with all of us 🙂

    • #18067
       Shumita Ralli
      Participant

      Morning All

      Ron, Charlene, Andy, Steve, extremely grateful for your inputs on this forum.

      @drandyhall , thanks for sharing the links re stem cell research. Disappointed to read about the scams but still hopeful that we’re on the brink of something from a credible source soon.

      Now researching the recently FDA approved PRM151. Unfortunately my dad has not tolerated nintenadib and our options at this time are non existent.

      Stay well, stay strong!

      regards

      Shumita

       

       

       

       

       

      • #18073

        Hi Shumita,

        Thanks so much for getting in touch with us, and for your kind words. I’m really grateful you’ve found the forums and even moreso, that you find them helpful and informative!

        I was sad too about the scams re: stem cell therapy and the fact that so many occurred, the PF Foundation had to put a warning on their website about them. Stem cells are being used for so many things nowadays that I can only imagine it is a matter of time before they’re useful in someway to help those of us with IPF… fingers crossed something positive is on the way soon!

        Has your doctor reduced the dose of OFEV for your Dad, to see if he tolerates a lower dose (ie. 100 mg as opposed to 150mg twice daily)? I know sometimes this helps and even a small dose of the anti-fibrotic medication can be better than nothing. Sorry if they have, and I am just asking random questions…

        Thinking of you and your Dad as you investigate further options. Feel free to get in touch if you have any other questions.

        Warm regards,
        Charlene.

    • #18079
       Shumita Ralli
      Participant

      @charlene Thanks, yes we tried low dosage 🙁

    • #18085

      Oh bummer, sorry to hear that Shumita! I thought maybe this would be an interim step to help your Dad manage some of the unpleasant OFEV symptoms. Sorry the reduction in dosage didn’t help at all. Goodluck in your quest for something for your Dad… do keep us posted if you come across any gems and I’ll do the same!
      Charlene.

    • #18087
       Steve Dragoo
      Participant

      @shumita

      I don’t remember if I have mentioned these to you and I am not sure where your father is located. These are what I believe help me improve significantly from where I was 4 months ago.

      Serrapeptase – caution – ask me…

      Warm water w fresh squeezed lemon/lime and a little real honey and nothing else for at least 20 minutes. (I drink 2 big glasses every morning).

      Gym – even if the only thing is a recumbent bike for a few minutes it still helps

      Diet rest water

      Laser

      Other things: good B complex, vitamin, D3 taken with K2m7, astragalus, nattokinase. Our PF newsletter.

      Hope you will find something that helps your dad.

      Steve

    • #18180
       Shumita Ralli
      Participant

      Thanks Both, for your response and advice. I’ll keep you posted. Regards

      Shumita

    • #19270
       Marsha
      Participant

      I am so pleased to report that my recent PFT, 6-minute walk and CT scan indicate that I am experiencing every single benefit of laser therapy since I started treatment last February! And I have the tests to back it up!!</p>
      The Radiologist’s findings unequivocally state that all aspects of my CT scan (of just two days ago) are unchanged from my CT scan from January 2019.

      In addition, as I posted previously my PFT indicates that my FVC went up by 6% and my FEV1 went up by 8% in comparison to my PFT from a year ago.

      No change in the amount of oxygen I require at rest or with exertion.

      My pulmonary fibrosis remains  extensive and severe, true.  There is no cure.  However, based on the positive results reported on this site by so many people who suffer with IPF, I firmly believe that laser treatment therapy is so worth trying not just for better numbers but how better numbers  manifest in enhancing one’s quality of life, in my case, elevated energy and a feeling of empowerment associated with being proactive in seeking out and commiting to the potential benefits of undergoing laser treatment therapy.

      I am so grateful to God for leading me to His Angels:  Dr. Hall, Charlene Marshall and all of you who participate on this site! Blessings…

       

       

      • #19279
         Andrew Hall DC
        Participant

        Marsha,  I too along with Charlene and everyone else am THRILLED with the positive changes you have had.  Wonderful to see no changes on your CT scan!  So glad you started laser therapy, and I hope we see more positive changes in the future.   Way to go girl!!!!

        God Bless you!

        Andy

    • #19272

      Oh my gosh @marshaharris, I am so happy to hear from you and thrilled to read this news! Congratulations on table results since January, that is excellent. @drandyhall, did you see Marsha’s update? So wonderful that not only do your numbers reflect stability, but how you feel has improved too. Amazing news Marsha, thank you for sharing that with us!!! Sending you a big congratulatory hug!

      Charlene.

    • #19281
       john styles
      Participant

      Congrats Marsha ( @marshaharris ) !  It is comforting to here of your good results.  I have also experienced the same results, more energy and and an up tick in the pft results. What is your schedule of treatment? I am doing about 1 treatment every 5 days, for example if I do a treatment on Wednesday, I then do a treatment on Monday and then Friday. How long are you doing laser? I am doing 3 minutes over each lung front and back for a total of 12 minutes at 9 watts on a light force laser. I also do about 10 seconds over the acupuncture puncture points with the laser turned down to 1 watt and the head changed to a narrow head.  God bless Andy, I had said a prayer and the next day I found his post and contacted him and started laser January 17.  I am down to 37% lung function so stability results to me are a big accomplishment especially after deteriorating last year.  Please keep posting, it is important we share our results.

      • This reply was modified 6 months, 3 weeks ago by Charlene Marshall. Reason: tagging
    • #19334
       Stephanie
      Participant

      Hello. I am new to the forum and just have a brief question.  After contacting Dr. Hall and reading about laser treatments, I have tried to locate a provider who will treat me. My local provider was not interested in even reading about the process. Therefore, I will have to travel to have the treatment. Does anyone know of the provider in the Los Angeles area who can help me? I have called several chiropractors in the area but again no luck.  Any assistance would be greatly appreciated.

    • #19336
       Andrew Hall DC
      Participant

      Hi Stephanie,

      I can tell you that Melissa Ritter DC in Newport Beach would accept you as a patient.  May be a long way for you to travel but she is in the LA area.  I have known her for over 10 years and knows laser therapy as well as anyone in S. Cal.  She has credentialled other doctors, etc.  Her phone is 949-833-3472.

      • #19337
         Stephanie
        Participant

        Thank you so much. I will give her a call on Tuesday. Have a wonderful Memorial Day weekend.

    • #19996
       john styles
      Participant

      Thought I would post my 5 month update. Started laser Jan 17, I m currently doing once or twice a week at 9 watts with 3 minutes over each lung for a total of 12 minutes then switching to a small head laser and adjusting to one watt and doing 10 seconds over the acupuncture points for the lungs.  I carry a pulse meter so I can monitor my saturation’s and since starting I have more energy and saturation’s have increased a couple of points. I just returned from Paris and Provence and in Paris the saturation’s were 2 points lower probably due to pollution but when I traveled to Lyon the saturation’s returned to my normal and when I returned home my saturation’s were 3 points lower when walking, after 3 laser treatments the saturation’s have returned to where they were before going to France. I did use a pulse oxygen machine on the flights but I used one last year.  I had PFT tests in March and April and they showed improvement from test done in November 2018. I am stable and stable is a big to me, especially after deteriorating all last year. Special thanks to Andy Hall who had posted about laser and talked to me and thanks to Andy I started laser.

    • #19997
       Steve Dragoo
      Participant

      @caneelbay1

      Hey John,

      Anytime we are stable and generally maintain it is a big win in my mind.  Glad you have done so well, that is very promising for you and the class 4 laser Andy introduced us to early 2019.

      I know the laser was improving the numbers and my stamina but I am unable to find a class 4 here in the Philippines. I flew over here without O2 after moving and on the go for 48 hours before I rested – the longest I have gone in many years. Suffered no real breathing issues except a very quick session of feeling slightly out of breath but it passed fast – twice. Haven’t found a concentrator for night time yet so no O2 at all in the past month. Just returned from Malaysia back to the Philippines and we were pretty active there.  Since I could not find the right laser here, I decided to go with Wei laboratories products and they have helped significantly in just 6 weeks (subjective because I have no test results to back up my claim – other than what I mentioned already).

      So I suggest K-laser and Wei could knock it out of the ball park. If I had a class 4 here I would do both and get tested to prove the point. Probably won’t be stateside again until January or so but will do all the tests I can then.

      Steve

       

    • #20004
       Andrew Hall DC
      Participant

      John,  so glad you are still doing so well.  Awesome!  Happy you had a good trip to France.  Steve, I started the Wei products about the same time you did.  I think there is some improvement with my cough, no change in my O2 levels but the laser has maintained that pretty high anyway.  Mostly I want to find if it will reduce the fibrous tissue as they claim it can.  I get another CT scan in a couple months and I”ll  be done with the 3 month protocol of taking the product. Will be interesting to see if there are any changes.

      There is an IPF patient in the Netherlands that inhales ‘nano-nutrients’ just before a laser treatment and he swears by it.  When you think about it, it makes sense.  We need good nutrition in our lungs for them to heal and coupled with the ATP production in the lungs with the laser it gives the lungs a great opportunity to give them the nutrients to actually reverse the disease process.

      Andy

       

    • #20007
       Piet Potgieter
      Participant

      Andy’s last paragraph confuses me: do we eat through our lungs and what is ATP that is produced? How does this Dutchman inhale nano nutrients? @drandyhall?

      Regards,

      Piet.

      • This reply was modified 5 months, 3 weeks ago by Charlene Marshall. Reason: tagging
      • #20010
         Andrew Hall DC
        Participant

        Hi Piet ( @Piet-Potgieter)

         

        Sorry about the confusion.  ATP (adenosine tri-phosphate) is increased with laser therapy.  It is the substance that our cells derive their energy from, but also is the substance that the cells use to heal with.  This is one reason why laser speeds the healing of all tissues in the body (skin, muscle, bone, nerve, etc)  The vast majority of laser therapy providers use laser for musculoskeltal and neurological conditions but if works well for other conditions as well including lung diseases like PF.  However, as you know we need good nutrition for the cells to heal with as that is what provides the ‘building blocks’.  What specifically the Dutchman uses in the nano-nutrition I don’t know, nor do I know the technique he uses to inhale them.  But not all nutrition needs to be through the stomach, just like someone needing an IV to deliver nutrition after GI surgery when the patient is unable to eat.  The nano nutrition is microscopic and delivers the nutrition right to the lungs where it is needed.  So, it makes sense to me that with the ATP production and having the ‘building blocks’ delivered right where they are needed at the right time (moments before laser therapy), this could be a big deal.

        Andy

        • This reply was modified 5 months, 3 weeks ago by Charlene Marshall. Reason: tagging
    • #20013
       leontis teryazos
      Participant

      Andy,

      Could you let us know what Wei products you are using that you think could be helpful.

      Also do you have any idea how one get these nano nutrients the dutch person is using.

      • #20020
         Andrew Hall DC
        Participant

        Hi Leontis,

        I’m using the Lung Health formula Wei products.  It is a TCM (traditional chinese medicine) They are expensive, but if they do what the company claims it will be well worth it.  If you want to order some for Betty, give me a few days and I may be able to get you a discount.

        Andy

        • #20024
           Steve Dragoo
          Participant

          @let666

          Leontis – Wei has a standard protocol for all lung issues they support ad the website has some good basic details. They will also provide you a free consult with an independent doctor before, during, and after you start the pills.  Call the main number and they will direct you to a rep (sales rep), ask for info and the free consult. – Steve

    • #20014
       leontis teryazos
      Participant

      Andy ( @drandyhall )

      Can you please contact this Dutch person and find out what exactly are the nano nutrients he inhales and how one can get them.

      • This reply was modified 5 months, 3 weeks ago by Charlene Marshall. Reason: tagging
      • #20021
         Andrew Hall DC
        Participant

        Leontis,

        I have emailed the gentleman about the nano nutrients and asked all the questions, what is in them, how much, where to purchase and how do you inhale them. When I hear back I will let you know……..

        Andy

      • #20023
         Steve Dragoo
        Participant

        @drandyhall

        Andy – let me know if you get a discount, I need to place my third order soon. Thanks – Steve

    • #20025
       leontis teryazos
      Participant

      Steve/Andy,

      We will be seeing a traditional Chinese Medicine expert who helps lung cancer patients in a Montreal hospital with exercise, nutrition, breathing, etc. I will ask him about this product as am sure he will know about it. Steve, do you notice anything better since using it? How much is a 1 month supply? I am somewhat skeptical as unlike some of the other things we discussed there are no studies or trials that these products work.

    • #20030
       Steve Dragoo
      Participant

      @let666

      Leontis – I made a fast decision to start Wei because I cannot find a class 4 laser here in the Philippines and I had several local friends in medical looking here.  I am totally surprised by the significant (subjective) improvements I feel.  The laser was a great help and Wei has boosted me too.  Looking forward to my next tests but they will not be until I return to the USA early 2020.

      I am in the tail end of week 5 in a couple days and have good stamina. Once in a while I am short of breath a few seconds after quick moderate exercise like running upstairs but every time my O2 is 95+ but my heart is over 105. I think this is PAH but even that seems a lot better.

      Really had a very tough 48 hours of moving and flying before I slept (airplane sleep doesn’t count) but had no real issues flying to the Philippines and just returned from Malaysia – no problem. Before Wei and the laser I was going downhill and had little stamina but to be clear I also take some supplements that I know help a good amount. – Steve

    • #20133
       David Swain
      Participant

      Dr Andrew Hall. @drandyhall I have been doing K-Laser since end of March. If I’m honest with myself I don’t think there has been any improvement, as my symptoms are getting worse. My O2 levels are down and I’m slightly more breathless. Do you think this may be due to laser and that I should stop laser treatment?

      I also have an intriguing question. During my last laser treatment, I measured my blood SAT levels with an oximeter. While treating front right lung O2 increased from 95 to 98. On all others areas it fell to 93. We were so amazed that we repeated the front right again, with the same result. Have you met this before and do you think it reflects a variation in the scarring for different parts of my lungs? Should I increase the treatment times in the areas that fell.

      Thanks for all your input and help. David

      • #20145
         Andrew Hall DC
        Participant

        Hi David,

        I have never heard of this before where the O2 raises on one side and decreases on the other.  I think though that it is a good idea to try increasing the dose on the left side to see what happens.  Frankly, it’s a mystery to me why it would do that.  When is your next PFT?  It will be interesting to see what the FVC, etc is doing and if there are changes.

        Andy

    • #20142
       john styles
      Participant

      Hi David, wow those are good sats from where I see my sats at 90 to 91.  Usually my sats will decrease right after laser and then shoot up about 10 minutes later to 96  and then level off a couple points higher at 92 or 93 for the rest of the day.  I am doing laser twice a week. Maybe there is something else going on, maybe check pulmonary hypertension.  Hope it stabilizes and benefits you.

       

      • #20146
         Andrew Hall DC
        Participant

        Hi Jgohn,

        You may be right, pulmonary hypertension could be a cause of what’s going on with David…….  I would love to know what it is that is making his stats change like that.

        Andy

    • #20179
       David Swain
      Participant

      Hi Dr Andy and John,

      Thanks for your helpful comments. I have had a look at the symptoms of pulmonary hypertension and don’t think I have that.

      I measured again at my last laser treatment and this time O2 saturation increased on both front lungs, wheras previously it had increased only on right front. So I think that is good and will measure again during tomorrows treatment. I am discussing with my chiropractor increasing the dose by 1500 joules as Dr Hall suggested on another forum. I’ll keep you posted………

       

      My sats generally are down to about 80% while exercising, but I am not particularly breathless and I am not on O2.

    • #20181
       Steve Dragoo
      Participant

      @davidaswain

      Hey David,

      How do you measure your lungs independently for O2?

      Steve

    • #20182
       David Swain
      Participant

      Hi Steve. @steve-dragoo

      It’s good to hear from you again and that things are working out good for you in the Philippines although it’s a pity you cannot find a laser provider.

      In answer to your question, all I do is read the oximeter on my finger while undergoing the laser treatment on each lung.

      David

    • #20183
       john styles
      Participant

      HI David, you may want to use some oxygen while exercising, 80 is low and can damage other organs.  I do not know where the laser will lead us to, I only hope we have stabilization.  As for now it look promising. Good luck.

       

    • #20221
       Marsha
      Participant

      G’morning, Andy @drandy and Charlene @charlene-marshall!  It feels like forever since we’ve been in touch and I hope you are both doing well.  My reason for posting is confirmation re laser treatment protocol.  Dr. Cebek (who has been wonderful since I started seeing him last February) has recently started scheduling me for treatment once every two weeks.  I thought the # of treatments would eventually settle at 1xwk and remain as such to continue the positive benefits as long as possible.  I wanted to check with you, Andy, to see if this is accurate.  My concern is to ensure what benefits I’ve experienced to date and timing of future treatments that will support this.  Thank you for your input…I am a bit more foggy recently and as always appreciate your help!  Blessings, Marsha

    • #20227
       Andrew Hall DC
      Participant

      Hi Marsha,

      We are all in new territory here with long term laser use.  I honestly can’t say how you will do with laser treatment every two weeks.  I would suggest that you just monitor your progress and see how you do with it.  I continue with weekly treatment because it works well for me, I am maintaining very well.  My concern is that I fear that if we regress I don’t know if we will be able to get back to the level that we were at when we stretch out treatment frequency.  For myself, I don’t want to take that chance, if I slip and get worse I’m afraid that I won’t be able to regain where I am now.  This is a serious and scary disease!   On the other hand I might do just as well at every two weeks or even once a month, but I just don’t know………

    • #20247
       Marsha
      Participant

      @drandyhall  @charlene-marshall
      Thank you, Andy, @drandy for sharing your thoughts on this “new territory” (good call!) of long-term laser use.  You always have a way of clarifying the big picture and then addressing the necessary details within it…surely one of your many gifts that I so admire!  I will address the situation with Dr. Cebek when I see him on the 15th.  I really do not want to risk the quality of life benefits I have realized over the last five months.

      On the lighter side, I am looking for part-time work to finance full-body laser therapy treatments…will let you know how it goes if I can find a Dr. to administer it…one never knows!!                  Best regards,  Marsha

       

      • #20289

        Sending you lots of love and best wishes @marshaharris! It is always so nice to hear from you, and you are so eloquent in your writing and kind words that it just brightens my day 🙂 Goodluck with your chat with Dr. Cebek on the 15th, I’m curious to hear what he says. Do you mind reporting back?

        Best wishes!
        Charlene.

    • #20301
       Sam Bilotta
      Participant

      Hi Charlene

      My name is Sam Bilotta and I live just north of Toronto (Barrie) Ontario Canada. I’ve been diagnosed with IPF in July 2018. I’m currently on the OFEV  therapy (150mg) twice daily.  Reading your forum about Laser Therapy . I was wondering if you knew where in the Toronto area where I can go and give this 4k laser therapy  a try.  Any information would be greatly appreciated.  Thank you

      Sam

      • #20305

        Hi Sam ( @sambilotta ),

         

        So nice to hear from you – hello to a fellow Canadian! I have friends up Barrie way actually. Are any of your specialists out of TGH? I haven’t yet investigated laser therapy providers in Toronto but I’m glad @drandyhall was able to provide you with some contacts! Do you mind reporting back and letting me know what you find out? It sure has sparked my curiosity.

        Kind regards,
        Charlene.

    • #20302
       Andrew Hall DC
      Participant

      Hello Sam,

      I have done a search for youand I have found that in nearby Angus is Angus Therapeutics @705-424-8824.  Also in Wasaga Beach are doctors Adams and Mardi @ 705-429-0911.  If they have questions about treatment protocol know that I will be happy to provide that for them!

      Best wishes,

      Dr Andy Hall

    • #20318
       Sam Bilotta
      Participant

      Hello Dr. Andy Hall;

      I would like to thank you for the contacts that you have provided me with. I will be contacting the Angus Therapeutics since they are only about 1/2hr away from where I live in Innisfil. I will keep you informed on my progress with them. Thanks again

      Regards

      Sam Bilotta

      • #20336
         Andrew Hall DC
        Participant

        No problem Sam.  If there is anything I can do to help please let me know!

        Andy

    • #20319
       Sam Bilotta
      Participant

      Hi Charlene;

      Its a pleasure to meet you despite our circumstances. My pulmonologist is Dr. Anna Day and she works out of Womens College Hospital and is also part of a “TEAM” at TGH. Thanks to Dr. Andy Hall for providing me with some contacts, I will definitely be in contact with them sometime todayand will keep you and Dr. Hall updated on my progress.

      Btw Charelene are you also from the Toronto area?

      Thanks again we’ll keep in touch

      Sam Bilotta

      • #20345

        Hi Sam,

        Oh, I’ve heard many good things about Women’s College Hospital! I’ve had friends treated there before, not for interstitial lung diseases, but I know your pulmonologist would be well connected and skilled just being part of the UHN. I don’t live in Toronto, but about 2 hours from it yes 🙂

        Please do keep us posted on the progress you make in securing laser therapy near your home. That is exciting news! Have you seen the new “Be Amazed” video from Toronto General regarding their transplant program? It gives me so much hope and it is very well done. Here is the link if interested: https://www.youtube.com/watch?v=32ik8x6_wtk&t=2s&fbclid=IwAR284pBWW80nB1dxn6nBiCV1QXyZzLdFy-O1PymucMo1MMR4sjpGPXY9ZHU&app=desktop

        Enjoy your day!
        Charlene.

    • #20363
       Richard Jarvis
      Participant

      Hi,

      My DLCO function had been trending down among PFT’s  from last December and January to my PFT on May 15, 2019.  Following my May test, I began K Laser treatment with Doctor Karen DeSimone of KD Therapy & Fitness in S. Yarmouth MA, following Dr. Andy Hall’s Protocol.

      Prior to my latest test on July 11th, I have had 20 K Laser treatments.  My DLCO function rebounded from  the May test to almost hit the levels of last year’s results.  I cannot attribute the increase in lung function to anything other than Dr. Simeone’s K Laser treatments.  I am continuing treatment while my Pulmonologist continues to step down the dosage of Prednisone (currently at 5 mg) and I am looking forward to my next PFT results in October.  Many thanks to Doctors Hall and DeSimone!

    • #20366
       Sam Bilotta
      Participant

      Hi Dr. Hall ( @drandyhall )

      I called the people at Angus Therapeutics, I explained my situation with I.P.F. and how had read up on the 4K Laser |Therapy. The receptionist (Tracey) wasn’t quite sure about it so she put me on hold for a minute. She came back on saying that she spoke to the Dr. there and he said that they don’t do this kind of therapy there. Maybe I didn’t explain myself properly, or they just don’t know enough about the subject.

      Again any help in this matter will be GREATLY appreciated .

      Regards

      Sam

      • This reply was modified 4 months, 3 weeks ago by Charlene Marshall. Reason: tagging
      • #20507
         Robert Obrien
        Participant

        Hello Richard Jarvis.  Good to see you are experiencing benefits from laser therapy.  What is your diagnosis?  Is your pulmonologist on Cape or Boston?  What led you to Dr. DeSimone?  I have IPF since 2015 and on Esbriet.  Always looking for an edge!

    • #20367
       Sam Bilotta
      Participant

      Hi Charlene;

      I watched that video of UHN “BE AMAZED” and I was truly amazed at what goes on in behind the scenes at TGH.

      and you’re right about the fact that my Dr. is well connected. But sometimes I feel that she doesn’t do enough. I know that i’m not her only patient, but still. Anyway I wrote to Dr. Hall also about the laser therapy place close by my home. apparently they don’t do that kind of therapy .Maybe Dr. Hall can come up with some other suggestion or something that might help me explain to these people better.

      Take Care

      Sam

       

      • #20377

        Hi Sam,

        So nice to hear from you! Yes the video is pretty incredible, I agree 🙂

        Sorry to hear about your doctor though, it certainly can feel frustrating when we feel rushed or that our doctors could do more for us. Glad Dr. Hall is following up and hopefully can provide you with some suggestions and tips on how to pursue laser therapy close to home. Goodluck!

        Charlene.

    • #20370
       leontis teryazos
      Participant

      Richard,

      Very glad to hear you are improving. Did you also do a PFT in July that you can compare to your last PFT?

       

      • #20372
         Richard Jarvis
        Participant

        Hi Leontis,

        Sorry if my post was not clear. Yes I had a PFT in May (before I started K Laser treatment) and agin in July.  My DLCO improved by approximately 10 % according to the July PFT results.

         

        Best regards,

        Dick Jarvis

    • #20371
       Andrew Hall DC
      Participant

      Hi Sam,

      Please provide me with your email and I will send you some stuff that may help get you into Angus Therapeutics and I will offer some suggestions.

      Andy

    • #20373
       Sam Bilotta
      Participant

      Hello Dr. Hall ( @drandyhall )

      Thank you so much for responding so quickly .

      here is my e-mail address

      [email protected]

    • #20379
       leontis teryazos
      Participant

      Richard,

      I am curious about the meaning of DLCO results as not familiar with this. Usually PFT results are measured using FVC, FEV1, etc.

      Do your DLCO results mean the FVC, FEV1 were also about 10% better?

    • #20409
       Sam Bilotta
      Participant

      Hi Dr. Hall

      I Haven’t heard from you in a while. Hope everything is well .

      I not sure if you received my e-mail address. Please let me know.

      Thanks

      Regards

      Sam

      • #20410
         Andrew Hall DC
        Participant

        Got your email Sam, thanks.  I will be sending some stuff that may help you get into the doctor and get treated.

        Andy

    • #20495
       Sam Bilotta
      Participant

      Hi Dr. Hall

      Just want to give you an update about the Laser Therapy.

      Looks like I’m S.O.L.! . The only way that he will do Laser Therapy is first get a letter from my Pulmonologist (like thats going to happen) if its not part of her team of Drs. then she wont have anything to do with it. Get a letter from my family Dr. and I know she wont give me one cause she really doesn’t know too much on the IPF that’s why she sent me to the pulmonologist in the first place. If I do get a letter from any of my Drs. and that’ a big IF, he’ll need to get permission from The Ontario College of Chiropractors in order to perform the Laser Therapy on my lungs. He did say that he is going to get in touch with KLaser company to see if they know of any such treatment done by any other Drs. in Ontario and he will get in touch with me when he finds anything out.

      Thanks again for all your help Dr. Hall. Can”t say we didn’t try.

      Sincerely

      Sam

       

       

       

      • #20504
         Andrew Hall DC
        Participant

        Wow Sam,

        What a shame!  I would certainly hate for  you to not get laser therapy.  Who knows?  Some pulmonologists dont’ have a problem with laser therapy at all, there is always the outside chance you could get a letter from him. Worth at least trying.  I think all of us in the US are blessed that we don’t have these kinds of problems getting treated.

        I’ll keep good thoughts for you……..

        Andy

    • #20505
       john styles
      Participant

      Hi Sam,  looks like you are having a rough start to trying to start  laser. You are about 2 hours from Niagara falls and there may be a chiropractor there that has a class 4 laser.  I remember when I was in Belfast Ireland that has socialized medicine a couple years ago I got sick and the concierge at the hotel I was staying at got me an appointment with a private pay doctor and within hours,  <i>I</i> was seen by a doctor and had a prescription all for about a $100 dollars. Here in the USA I have found it easy to find chiropractors to treat me, I am currently in the Mountains of North Carolina for a few weeks and called ahead and explained to the chiropractor I had a terminal disease and the laser had given me results and would he or she treat me and I got  a yes answer. That is the same way I found the current chiropractor who treats me in Florida. We are in the same situation as you in Canada, I have medicare here in the USA but it will not pay for any unapproved treatment, same with private insurance.  I found no polmonologists I talked to would consider laser.  Good luck.

    • #20506
       Sam Bilotta
      Participant

      Hi John

      Thank you for the kind words. Its funny that you mention Niagra Falls.

      My wife and I are actually taking a trip down there this weekend to meet up with some relatives that live in Central New York State , its like a half way point for both parties :). I guess while I’m down there I might as well look up some Chiropractors that have a Class IV laser and see if they  have to say.

      Thanks Again

      Regards

      Sam

    • #20515

      Goodluck Sam! Please keep me posted on what you find, as I am curious since we’re within the same geographical proximity. Safe drive to  NY! 🙂
      Charlene.

    • #20563
       Andrew Hall DC
      Participant

      GOOD NEWS!

      The updated laser therapy protocol is finally available.  To see the update, and print for your doctor, please go to my office website and click on IPF.   summit-chiropractic.com

      Sorry to everyone for this to take so darned long……….

      Dr Andy Hall

      • #20620
         Peter Goodwin
        Participant

        Thanks @drandyhall . Only just seen this. (I find it difficult to navigate this forum, hope others haven’t missed it too).

        Recently been diagnosed with PH and Bronchiectasis. Would Laser therapy be beneficial for these too?

        Regards.

        Peter.

         

        • #20627
           Andrew Hall DC
          Participant

          Hi Peter,

          I honestly don’t know if laser will be helpful for PH and/or Bronchiectasis.  This is all new territory, but I don’t think it would hurt to give laser a try.  I will keep good thoughts for you……

          Andy

      • #20635
         Peter Goodwin
        Participant

        Hi @drandyhall

        There are 9 frequencies on your web page, each lasting 25 seconds, so total time is 3 min 45 seconds. However, you also indicate a time of 4.5 mins for each quarter lung and my chiropractor believes these 2 figures aren’t compatible. He suggests there may be a one or more frequencies missing.

        Could you confirm the protocol on your website is indeed correct.

        Many thanks.

        Regards

         

        Peter

        • #20730
           Andrew Hall DC
          Participant

          Peter,

          There is one missing…….  Difficult healing.  17024 HZ,  10 watts, 25 seconds.  Thanks for bring that to my attention!

          Andy

    • #20667
       Joseph Collins
      Participant

      @drandyhall Andy, in the first paragraph Of your personal story it states that you were diagnosed in 2004. I believe that to be in error. Please verify date as I was diagnosed in May of 2014 and thought my IPF was paralleling yours.

      Regards,

      Joe Collins

      • #20728
         Andrew Hall DC
        Participant

        Hi Joe,

        You are right, a typo, I was diagnosed in 2014.  I will contact my webmaster and get that changed.

        Andy

    • #20731
       Joseph Collins
      Participant

      Yesterday, 8/6/19, I had a PFT at my pulmonologist’s office. This was exactly 5 months since my last one, (3/6/19), and the first since I have been receiving laser therapy.

       

      MY MARCH READINGS WERE,       FEC/FEV1/TLC/DLCO = 37/45/61/21

      MY AUGUST READINGS WERE,     FEC/FEV1/TLC/DLCO =. 43/51/52/26

      “The pulmonologist comment was that I was “REMARKABLY STABLE overall from a lung standpoint, is stronger today.” This was followed by, “He now relates he’s been getting laser therapy from a chiropractor and he believes that the laser therapy what made it better. This of course is likely nonsense but it’s not likely to be hurting anything.”

      I am going into my sixth year of this disease and only have had the one pulmonologist so I have a hard time understanding his position on laser therapy since I have never, not once, showed the improvement that was evident yesterday. He has seen me gradually slip away but is totally blind to my effort to climb back and hold on. Further down in his comments he doubled down on his earlier comment. Perhaps the time has come to go Doctor shopping! If the next eleven treatments work as well as the first eleven I may look for a half marathon to run in!!

       

      • #20739
         Andrew Hall DC
        Participant

        Hi Joseph,

        I am thrilled to hear of the positive change!  Boy, how the attitudes and acceptance of pulmonologists vary.  Some are like yours, and others are totally for laser therapy.  Go figure.  My pulmonologist totally ‘gets’ laser therapy, knows it helps, but said he would never actually refer a patient out for ‘any alternative care’ and that he is totally allopathic.  Seems weird that a doctor treating a deadly disease wouldn’t recommend something that would help his patients live longer and healthier.  BUT, I bet that if he was to be diagnosed with IPF he would run down to my office as quick as he could for laser therapy!  I considered changing doctors also but the attitude is not going to bother me.  I told mine that because he told me IPF was incurable I was taking responsibility for my own health and treatment and that I was only going to use him for the CT’s and PFT’s that I was going to need to monitor myself.  He didn’t like it…….  but that is exactly what I’m doing.

        Andy

    • #20735
       john styles
      Participant

      Hi Joseph, congratulations.  I agree about the pulmonologist, hard to understand that almost all of them are blind to the laser benefit of stopping or slowing the progression. I have two pulmonologist and both dismiss the laser.  I welsome stability after last year of deterioration. I am scheduled for a pft in September.

    • #20751
       Piet Potgieter
      Participant

      Congratulations Joseph and Andy!

      Are you on Ovef or Esbriet?

    • #20757
       leontis teryazos
      Participant

      Joseph,

      Those are impressive improvements in your PFT. Just wondering are you doing anyhing else different such as taking supplements? Also do you feel better and can walk a little further without getting as much out of breath? I had my wife do 6 min walking test before she started the laser treatments and she had about a 50% improvement in distance after about 20 treatments.

    • #20762
       Joseph Collins
      Participant

      Piet and Leontis, when I was diagnosed the Ofev trial was still ongoing. My pulmonologist asked if I would be interested in joining it. After he told me how rough the side effects were and how expensive it would’ve once approved I opted not to get involved. I refused all medications until 4/17/2018 when it appeared that the disease was on the move again. At that time I was put on 30 mg Prednisone per day for a 30 day evaluation. On the 28 th day I suffered a heart attack which stopped the trial and resulted in me getting my first stent. Both my cardiologist and pulmonologist were convinced that the blockage was likely the cause of my breathing problem. From that point until recently I had zero stamina and could barely walk from the den to the bathroom. Bathing and combing my hair was pure torture! Then on February 10; 2019 I acquired a second stent. Shortly after that I started to bleed internally. The first indication was a blood test in March which showed my hemoglobin level to be one point below the normal range. Unknown to me the level kept dropping until June 27 when another blood test found I was critical. This resulted in being hospitalized for two units of blood and a search for the source of the blood loss. I was scoped from the lower end as well as the top then swallowed a camera capsule but no source was found. I was sent home but two weeks later blood tested positive in my stool. Back to the hospital where they found and cauterized two small lesions just above the entrance to the small intestine.  Another unit of blood and back home. Still not feeling well I scheduled an appointment with my cardiologist to see if my heart could be the problem. She found nothing but did agree to order a blood test to check my hemoglobin which was back critical again. Four more days in the hospital and three more units of blood. Another capsule scope which was negative for blood leak so back home. That was last Saturday August 3. Another blood test on August 6 showed my hemoglobin improving so, hopefully, I have that behind me. It was during this time period that I managed to log 13 laser treatments. My DC could not have been more accommodating. I suggested we postpone the treatments until I had sorted out the bleeding problem but knowing I had a PFT scheduled for August 6 and at least as curious as I was as to what the result would be he juggled his schedule so we could push on. We are both happy with the results and looking forward to the next PFT in four months. With any luck the results will be even better! I am Darrel’s first and only IPF patient but after my first results he is inclined to offer the service to others who need it. A positive result this next period would really convince him that he needs to do this.

      Sorry for the length of this but I wanted to show the whole picture. For any treatment, including laser, to work under these conditions is, in my opinion, absolute magic!

      joe

       

    • #20766
       leontis teryazos
      Participant

      Joseph,

      Sorry to hear what hell you have been through. However, sure sounds like you are getting better so stay in touch with your results and I will do same.

    • #20767
       Joseph Collins
      Participant

      For those that may be interested below are the results of all the PFT’s I have had since I was diagnosed. I tried to post it as a spread sheet but can’t seem to get it right so you will need to adapt as I did. Below each date is four stacked numbers. These represent FVC, FEV1, TLC and DLCO. Not the way that I had hoped but the info is there if you care to work for it.

      Joe

      Date

      FVC

      FEV1

      TLC

      DLCO

      11/14/2014

      47

      58

      71

      42

      5/18/2015

      52

      60

      65

      39

      11/16/2016

      45

      55

      53

      36

      11/15/2017

      44

      55

      44

      50

      4/17/2018

      41

      50

      51

      37

      8/16/2018

      43

      53

      46

      55

      3/6/2019

      37

      45

      61

      21

      8/6/2019

      43

      51

      52

      26

       

    • #20782
       jaime L manriquez
      Participant

      Hello Charlene, what a great news about new trials happening now, like you said, Hope we live long enough to be able to see an get the cure to this horrible deseas. Still fighting with this phlegm of mine.

      all the best

      jaime

    • #20796

      Hi Jaime,

      Thanks so much for writing – it is nice to hear from you! Sorry to hear you’re still fighting the phlegm, such a pain in the neck isn’t it? Hang in there and I hope you find an effective remedy soon. I too hope we live long enough to see a cure for this disease, or in the very least, something that can reduce the scarring damage caused by the fibrosis! Fingers crossed – I know there is a lot of amazing research underway out there, just hoping someone has a break through soon! Talk to you soon, Charlene.

    • #21279
       john styles
      Participant

      My 6 month update on doing laser therapy, I had my pft test yesterday and and my pulmonologist ( he heads the transplant department for a major hospital , he does not indorse laser or believes it works) said I was rock solid stable. My pft are steady since last November. My dlco actually rose 2.8 points. I followed Andy’s protocol for first 3 months then settled into twice a week at 9 watts for 12 minutes. I have been very steady in doing laser, when in the mountains of North Carolina I have a chiropractor who treats me. The only time I was not doing laser was when I was in Europe for two weeks. I found it very easy to find a chiropractor to treat me. I tell them I have a terminal disease and tell them that laser may help and they agree to treat me. I have usual interstitial pneumonia a more aggressive form of IPF. I can not take the drugs due to liver scaring and a transplant would require a double liver and lung. So being stable is huge. Slowing the progression is like an extension on life. I have been stable for 10 months and prior to November I was in  steady decline.  Sometimes I would wonder if it was working but I have kept with the laser. Thanks to Andy for letting us know it was an option.

      • #21291

        Congratulations on your news of being stable, John! I agree, this is very good news – I always say ahead of my appointments “I’ll consider stable a ‘win'”…. happy for you! Keep up the great work, as whatever it is you’re doing – whether it be keeping active, laser or a combination – seems to be working and I am grateful for that! As David says, “keep on keepin’ on”…. thanks for the update on how you’ve been doing 🙂

        Charlene.

        • #21297
           Steve Dragoo
          Participant

          Glad to hear about your success John.  I appreciate the encouragement through your success… – Steve

    • #21286
       john styles
      Participant

      I am showing my age, the above is my 8 month update of laser therapy.

    • #21287
       David Swain
      Participant

      Hi John ( @caneelbay1 )  I’m so pleased you are still doing well and that Laser seems to be working for you. I have been following Andy Halls’s protocol since April but my test in July showed a reduction in FVC from 83% to 77%. This reduction has meant that I will be eligible for Ofev or Esbriet, as here in UK we are only considered if FVC is below 80%. I’m due to see a different pulmonologist about this on 14 November.

      For years, even before I was diagnosed with IPF, I’ve suffered from Burning Mouth Syndrome and change of taste. This is worst at night and I’m wondering if it is connected with IPF. I’d be interested to hear if anyone else has experienced this.

      I try to keep as active as possible, as I find this helps. Generally managing to walk 12,000 steps or 4miles a day.

      I have recently started taking CBD oil and think this is helping, particularly with O2 levels. For the present, I’m pressing on with Laser in the hope that I will stabilise. We must all “keep on keeping on” to battle this disease.

      • This reply was modified 2 months, 4 weeks ago by Charlene Marshall. Reason: tagging
    • #21300
       john styles
      Participant

      Hi David, I increased to twice  a week laser treatments with 3 minutes over each lung front and back for a total of 12 minutes about 5 months ago. I think the drugs are good and would take them if I did not have liver scaring.  Hope the drugs help. I went from fvc 1.98 in March 2018 to 1.70 in November 2018 and started laser Jan 2019 and now my fvc is 1.73 as of September. My Dlco went from 11.2 in March 2018 to 10.4 in November 2018 and September 2019 is 13.2.  I do not know if this will keep working but hoping it does.

    • #21359
       Marsha
      Participant

      @drandyhall

      Hi, everyone!  Time to share my numbers for my latest PFT done a few weeks ago.  Please note that I began treatment February 2019 according to Dr. Andy’s protocol and for the last two months have been treated once a month.  Current numbers are as high or better than those I posted in April:  FEV remains at 91; FEV1 up 2% to 91, and DLCO up 5% to 33.  I am thrilled that at present my numbers still reflect improvement (or better) even though the number of laser treatments per month is dramatically reduced to <1 since June.

      Thank you, Dr. Andy, for all you’ve done and continue to do for all of us who suffer this dreadful disease.  Blessings to all!  Marsha

       

       

      • This reply was modified 2 months, 3 weeks ago by Charlene Marshall. Reason: tagging
    • #21361
       leontis teryazos
      Participant

      Marsha,

      Just curious if you know what your numbers were before you started the laser treatments.

      The FEV and FEV1 numbers of 91 seem to be numbers of a normal person with good lung function.

    • #21362
       Steve Dragoo
      Participant

      @marshaharris

      Terrific Marsha!

    • #21372
       Andrew Hall DC
      Participant

      Marsha,

      Know that we are all THRILLED  for your progress.  You are inspirational!!!

    • #21373
       Denny
      Participant

      Good for you John! I am paying close attention to your numbers because I also have usual interstitial pneumonitis. I have raised my DLCO numbers from 59% at diagnosis to 89% in June. All of my other numbers are good. I haven’t started the laser therapy yet but I will when needed. the Wei herbs have improved my numbers a lot!

    • #21379
       Steve Dragoo
      Participant

      @deliassen, @caneelbay1

      I think we should do Wei and laser together.  Wei was successful for my IPF and I will only need maintenance doses maybe 2x per year. When I return to the USA I will restart laser.

      Steve

    • #21380
       David Swain
      Participant

      Hi Steve @steve-dragoo

      It’s good to hear that you seem to be doing OK on your long stay in the Philippines, even without the laser treatments. Have you had any PFTs while there or is it just a general feeling? Personally, the laser does not seem to be helping as my PFTs are worse and I’m due to see a nurse on Tuesday about starting medication. Are you on meds as well as all your supplements?

      I’m wondering if the WEI herbs might help, but don’t know how to access them here in U.K. As you are also outside US, do you have any suggestions as to how I can get them?

      I’m also booked for another 2 month holiday in New Zealand in January. Does anyone know of a laser therapist there? I’ll be based on Hamilton, North Island.

      Best wishes – David

      • This reply was modified 2 months, 2 weeks ago by Charlene Marshall. Reason: tagging
    • #21381
       Steve Dragoo
      Participant

      @davidaswain

      Hey Dave,

      No treatments over here. Pulmonologists are almost completely unaware of ILD/IPF as it is quite rare here.  So when I return to the USA sometime in 2020, I will have my local Roanoke, VA doc set up tests she may want to do and I will restart laser therapy. I think laser + Wei will be very helpful for me and I know everyone came to this forum from different causes of lung ailments so I cannot speak to how something may help but certainly hope it does.  That is why I love this forum so much because the moderators are intimately involved with our lung problems and this is a universal place to add insights that are better than many doctor recommendations sometimes.

      I plan on getting an O2 concentrator next month so that will be 5 months with no O2 or laser already – just Wei and various supplements – no meds for IPF.

      Wei shipped here no problem and took about a week to receive – 3 times. So not knowing your particulars and source of your lung disease, I will mention Wei took 3.25 months before I noticed any significant difference in my IPF. Main differences are more energy, stable O2 readings of 95-98, less out of breath when going upstairs, and slower heart rate – was also diagnosed with PAH so a slower heart rate and less out of breath are big. I will add I served in cardiology in the USA Navy, have a pulmonologist friend here, several nurses in the family and friends, and 2 doctors in the family but generally I don’t consult them about IPF.

      Reach out to Andy and see if he has any insight about laser in NZ.  I also brought a lot of supplements and the remaining first batch of Wei in my suitcases and had no issues coming here but I have been in and out of the Philippines over 10 times.

      Hope that helps… – Steve

    • #21382
       Marsha
      Participant

      @drandyhall @let666 @steve-dragoo

      Thank you, Andy, Steve and Leontis for your kind comments regarding my new numbers!

      Leontis, you asked about my numbers when I was diagnosed in 2015:

      Fvc 87, Fev1 97, DLCO 46.

      After lung surgery and chemo in April 2018:

      Fvc 76, Fev1 78, DLCO 38.

      I started laser treatments late February 2019 and did a PFT in April 2019:

      Fvc 82, Fev1 86, DLCO 28.

      And most recently during Sept. 2019:

      Fvc 91, Fev1 91, DLCO 33.

      I’ve not been treated with any prescription IPF medications.  I use oxygen at 2 at home and 3 with exertion.  Since 2015 I’ve been sleeping in a bed with my head elevated (I have GERD for which I take Omeprazole every day).

      So, that’s the big picture (much more than you asked for but I tend to go overboard!).  Plus, I now have my PFT history at my fingertips which will be very convenient for me.

      Blessings to you all and I so appreciate everyone’s input on this site.  Thanks again!

      Marsha

       

      • This reply was modified 2 months, 2 weeks ago by Charlene Marshall. Reason: tagging
    • #21470
       Wendy
      Participant

      I am a non smoker newly diagnosed at age 62 with IPF..my pulmonologist just started me on 10mg prednisone for 2 weeks. He is ordering Ofev for me and wasn’t interested in my questions about laser therapy.   However, my husband and I feel we have nothing to lose by trying it. So we found a chiropractor willing to do Dr. Halls photocall and I start my first treatment on Monday. My o2 on activity goes into lower 80s so they have ordered oxygen for me which I haven’t started yet. I seem to recover in the 90s after a minute or less.  My question is whether there is any known problems getting laser treatments while taking prednisone? I would appreciate any and all advice..very scared about all that is ahead of me. I emailed Dr. Hall about possibly being a part of his study, but no reply?

    • #21490

      Hi Wendy,

      Thank you for writing to us and sharing a bit of your story. I know it can be very overwhelming to be newly diagnosed and think about everything that is ahead of us. Be gentle with yourself and take it one day at a time! I know @drandyhall is quite busy, and will reply to your email as soon as he can. I did tag him here as well, so hopefully he can answer your question about laser therapy. I know lots of folks have had a good experience with it, please let us know about yours when you can.

      Regards,
      Charlene.

      • #21494
         Steve Dragoo
        Participant

        @wendyray

        Hi Wendy and welcome,

        Regards laser contraindications – that is unclear but please be sure the doctor/technician is using the right protocol and confirm each set of numbers. Mine was using the wrong settings for the first 3 visits. Also if you, as I do, have an enlarged lymph node – it is potentially possible to slightly enlarge it more but this therapy is new to all of us so I am not sure it has affected the node. My last MRI showed it enlarged after 3 months of laser treatment but I kept going twice a week longer than needed because I moved to the Philippines and there is no class 4 laser here.

        Please look at some of the other forums as there several other things you might consider doing.

        @charlene-marshall, are you waterlogged??? – Steve

        • #21524

          Great reply Steve! Thank you for being so welcoming and supportive of new members like @wendyray, and many others.

          I’m not water logged yet – I am loving being in the ocean every day. The pacific has a heatwave running through it right now – according to the locals – which has made the temperature like bath water. It’s lovely to wade in but apparently bad for the coral and reefs. I head to Kauai tonight, I don’t imagine the ocean will be as warm there. Lol – stayed tuned!  I’m off to the Na Pali coast next ….
          Charlene.

    • #21506
       Kate E
      Participant

      Hello, all. I’m finally considering pursuing laser therapy. My pulmonologist has said that he would read Andy’s protocol, and last night I downloaded it. Question, though: when you look at the protocol online, you get a chart for programmable lasers and some other info under the protocol section, but when you download it as a pdf, that chart doesn’t show up on the download. If I’m giving the protocol to someone with a K-laser, do they need all of that info or just what shows up on the pdf? Thanks for any help you can give. @drandyhall

      • #21525
         Andrew Hall DC
        Participant

        Hello Kate,

        Pleased to hear you are starting laser!  Sorry it’s taken so long to get to you but I am currently camped in the wilds of Wyoming.  In town now for supplies, etc.  No internet available at camp……

        Usually, the protocol is simply printed without converting to a pdf.  I don’t know if you can just print but that’s what I would suggest.  If you are still having problems next week I will be available again on Oct 10 and I can discuss it with my son ( the computer expert) and he will have a solution.

        • #21526
           Steve Dragoo
          Participant

          @katee,

          Hi Kate,

          The K-laser my doc used had predefined settings so we had to adapt the thoracic setting.  So make sure the numbers add up as we used the wrong timing for a couple of weeks.  Also, try a screenshot of the chart if you need it. – Steve

    • #21522

      Hi Kate,

      Really good question! I’m sure Dr. Hall will reply to you as soon as he can, I know he is a busy man 🙂

      In the mean time, John ( @caneelbay1 ) how did you print the protocol to bring to your physician to administer laser therapy? Are you able to answer Kate’s question? Keep me posted on how / if laser works for you Kate, I’d love to hear!
      Kind regards,
      Charlene.

    • #21523
       Kate E
      Participant

      Thanks, Charlene!

       

    • #21527
       john styles
      Participant

      Hello, I printed Andys information from his web site and printed the Egyptian study on lower level laser on acupuncture points ( Low-level laser therapy in chronic obstructive lung disease Sayed MA, El-Sherif RM, Mohamed AR, El-Sherif AA – Egypt J Bronchol  ) and gave it to the first chiropractor I use. I have found that when you explain the situation we are dealing with, a disease that is terminal and that the laser has helped people that the chiropractors are very caring and helpful, I use a chiropractor here in Western North Carolina when I am in the mountains. Can not say the same for the pulmonologists who dismiss the laser. Once you start I feel the consistency of weekly treatments is important.  I am doing 20 minutes twice a week at 9 watts and have done laser for 8 months. The only time I have not adhered to a weekly schedule is when I was in Europe for two weeks,  I have remained stable when my pft test done in September 2019 was compared to my pft test done in November 2018. This  is huge to me because I deteriorated 26% since diagnosis in November 2016 and 13% from March 2018 to November 2018.  I use a pulse meter to monitor my sat levels and in the mountains have to use portable oxygen because I live at sea level most of the year in Florida.  I would suggest monitoring your sat levels.  Hope the laser keeps working.

       

    • #21535
       Jack Blum
      Participant

      Hi to all,

      Sorry I haven’t posted for quite a while. I started Laser Treatment in February of this year. I have felt better and have had more energy ever since. I went for my PFT and six minute walk in June of this year. Unfortunately, my Fev1 dropped almost 10% from PFT in December of 2018. The transplant Doctor wanted me to do all of the tests for Transplant all over again! Was done a little over 2 years ago. I talked him into waiting 3 more months and go the PFT and 6 min. walk again. Being totally depressed, I did not report to this blog the results. I did not want to think that Laser did not seem to help me.

      I went over all that had happened and realized that in January, I had an episode on my treadmill where after 1 lap (1/4 mile) I had to stop and quit as my Pulse/Ox dropped to 75% and heart rate went over 130! That had never happened before. I quit the treadmill for 3 weeks and went into depression. It was at that time I discovered Dr Hall and Laser treatments. I have now completed 44 Laser Treatments and went back for another PFT and 6 Minute walk.

      My Fev1 is still at 2.09, but my DLCO improved and I increased my 6 minute walk 23 meters to 508 meters! The doctor said I was stabilized and good to go for another 3 months, no transplant tests!

      I have come to the conclusion that my lungs actually got worse in January prior to starting Laser Treatments. I log info on using my treadmill and pulse ox continues to get better and my heart rate is lower as I increase my walking speed. It has been slow coming back, but I now treadmill at 2.3 mph for 20 minutes daily and yesterday at completion my pulse ox was at 90 and hr at 106.

      Bottom line is do not give up, stay positive, fight depression. Thanks to Esbriet, Laser Treatments and exercise, I am doing ok!

       

    • #21537
       Kate E
      Participant

      Thanks to Steve and Charlene and Dr Hall and John for responding! Much appreciated. @drandyhall this is what I can tell you. When you go to the protocol on your summit website, it directs you to ‘download and print’ down at the bottom. When I did that, it converted it to a pdf, and there’s info missing on the protocol page in the pdf. The chart is missing that refers to the settings for a programmable laser, but it also removes several other lines. I would suggest that you have your son correct that, if he can. I can print the protocol correctly if I just print from the webpage without downloading it first, so I’ll do that for now. Just thought you’d want to know.

       

    • #21538
       Kate E
      Participant

      @steve-dragoo I have one other question for now. I’d like a better understanding of what the chart for programmable lasers is recommending for a protocol before I start calling places around here to see if anyone will do this for me. If one was using that chart, would they be using all of those settings that are listed, from ‘capillary to difficult healing’? Each for 25 seconds? You’d mentioned that your practitioner had used the wrong timing for your first 3 sessions. Thanks for any clarification you can give.

       

    • #21545
       Steve Dragoo
      Participant

      @katee

      Hi Kate – I started laser before Andy and his team posted the protocol so I got numbers from Andy and asked my doctor to tell me what watts, time, and joules he was using and we modified from there.

      So I have not looked at the chart but most K-laser class 4 modulate which means they reach different depths and affect different parts differently. For example, water responds differently than bone to the modulation frequencies but I hasten to add that I know little about this growing science.  Please reach out to Andy for a better example.  –  Steve

    • #21555
       Kate E
      Participant

      Thanks, @steve-dragoo. I’ll email Andy with my questions.

       

    • #21589
       Merle Sweet
      Participant

      After reading many positive responses on this thread to laser treatments I am thrilled to announce I have elected to participate in Dr. Hall’s laser study. I selected a chiropractor who has extensive experience using her clinic’s programmable class IV laser on neuropathy patients and she is delighted to do her part in the study. I am confident she will follow Dr. Hall’s therapy protocol as prescribed.

      I had my first treatment this morning and it went very well. The doc had the laser programmed when I arrived so it was a very efficient application of about 4.5 minutes each on the front and back of the left and right lungs. I have two more sessions this week and will continue with three sessions weekly for four weeks when it reduces to two sessions per week. I am already looking forward to my next PFTs on October 31 in order to compare those results with prior PFTs.

      Many people have reported “feeling better” following treatments. I hope I have the same experience, but I wish there was an objective measure to “feeling better.” Any suggestions?

       

       

    • #21608

      Keep us posted Merle! I’d love to hear about your experiences – this isn’t something I’ve tried yet but I’d love to hear how it goes for you, especially after a few sessions and comparing your PFTs. Best wishes!
      Charlene.

    • #21833
       john styles
      Participant

      Update on my laser experience. Had my lung function test yesterday and I am stable, with some improvement when compared to lung function test done Nov 2018. My FEV1 had improved 10% and Dlco improved 5%. I was first diagnosed Sept 2016. I had been in steady decline since diagnosis with 15% decline in fev1 from March 2018 to Nov 2018. I do laser twice a week for 12 to 15 minutes, I was doing 9 watts and now doing 12 watts. So much to consider when doing this because with lack of a lot of history on laser for lungs. I have been doing laser for 10 months. I do not think laser will cure this disease or improve our lungs but I feel it has stopped the progression. Sometimes I get discouraged when I have difficulty picking up a heavy object or need supplemental oxygen when walking distances but then I thank God I am stable. A lot to consider when doing laser, the size of the laser head matters, the power of the laser and times per week can impact the results as well as if the laser is working properly.

      • This reply was modified 1 month, 1 week ago by john styles.
    • #21836
       john styles
      Participant

      I had my lung function test yesterday, 10 months of doing laser and 12 month update. I am stable, my pft test done november last year showed Fev1 1.41 and Dlco 10.6 and November this year Fev1 1.56 and Dlco 11.2. I am doing twice a week and now doing 12 watts. I can not do the drugs available due to existings scaring in my liver and a transplant would require liver and lung.  I do not think laser is a cure but thank God for stable results. I am very dedicated to staying on schedule, the only time I missed laser treatments was when I was in Europe. I think the power of the laser and the laser head is very important and  if the laser is working properly.  Sometimes I get discouraged when I pick something up or walking extended distances and needing oxygen. I will take the stabilization and be thankful. Big thanks to Andy.

       

      • #21837
         Steve Dragoo
        Participant

        @caneelbay1

        Hey John,

        Any stabilization is a victory. But I also vaguely remember reading somewhere laser is contraindicated with any tumours.  I was using to much laser and it may have slightly contributed to an enlarged lymph node in my L lung.  Since I won’t be able to do any function tests until I return to the USA next year sometime, I don’t know it the lymph has stabilized since I have not used the laser in over 5 months. – Steve

    • #21840

      Hi John,

      Thanks so much for the update and thrilled to hear the good news re: stability. I agree with Steve, and any/all stable results should be celebrated. Kudos to you for being so proactive with your health, and the dedication you have to laser and sharing your results with all of us. Nice to hear from you, and hope you’ve been keeping well overall 🙂

      Charlene.

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