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  • john-styles

    Member
    July 26, 2019 at 5:38 am

    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.

  • sam-bilotta

    Member
    July 26, 2019 at 6:40 am

    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

  • Charlene Marshall

    Member
    July 26, 2019 at 3:16 pm

    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.

  • andrew-hall-dc

    Member
    July 30, 2019 at 8:58 pm

    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

    • peter-goodwin

      Member
      August 3, 2019 at 5:27 am

      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.

       

      • andrew-hall-dc

        Member
        August 3, 2019 at 11:25 am

        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

    • peter-goodwin

      Member
      August 5, 2019 at 7:26 am

      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

      • andrew-hall-dc

        Member
        August 7, 2019 at 8:51 am

        Peter,

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

        Andy

    • dianaj

      Member
      November 2, 2022 at 5:57 pm

      Thank you for your help!  It’s so sad to see that pulmonologists are not even talking about this.  It seems that they don’t even know that it’s an effective treatment.  But if they did, could they talk about it?  Is this something that is taboo to tell patients?

  • joseph-collins

    Member
    August 5, 2019 at 3:30 pm

    @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

    • andrew-hall-dc

      Member
      August 7, 2019 at 8:40 am

      Hi Joe,

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

      Andy

  • joseph-collins

    Member
    August 7, 2019 at 10:10 am

    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!!

     

    • andrew-hall-dc

      Member
      August 7, 2019 at 1:03 pm

      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

  • john-styles

    Member
    August 7, 2019 at 11:28 am

    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.

  • piet-potgieter

    Member
    August 7, 2019 at 11:16 pm

    Congratulations Joseph and Andy!

    Are you on Ovef or Esbriet?

  • leontis-teryazos

    Member
    August 8, 2019 at 7:05 am

    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.

  • joseph-collins

    Member
    August 8, 2019 at 1:13 pm

    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

     

  • leontis-teryazos

    Member
    August 8, 2019 at 3:40 pm

    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.

  • joseph-collins

    Member
    August 8, 2019 at 4:08 pm

    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

     

  • jaime-l-manriquez

    Member
    August 10, 2019 at 6:25 pm

    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

  • Charlene Marshall

    Member
    August 11, 2019 at 7:34 pm

    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.

  • john-styles

    Member
    September 13, 2019 at 6:08 am

    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.

    • Charlene Marshall

      Member
      September 13, 2019 at 7:16 pm

      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.

      • steve-dragoo

        Member
        September 14, 2019 at 2:04 am

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

  • john-styles

    Member
    September 13, 2019 at 1:39 pm

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

  • david-swain

    Member
    September 13, 2019 at 3:42 pm

    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.

  • john-styles

    Member
    September 14, 2019 at 5:52 am

    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.

  • marshaharris

    Member
    September 19, 2019 at 1:24 pm

    @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

     

     

  • leontis-teryazos

    Member
    September 19, 2019 at 2:45 pm

    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.

  • steve-dragoo

    Member
    September 19, 2019 at 6:05 pm

    @marshaharris

    Terrific Marsha!

  • andrew-hall-dc

    Member
    September 20, 2019 at 12:04 am

    Marsha,

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

  • denny

    Member
    September 20, 2019 at 8:35 am

    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!

  • steve-dragoo

    Member
    September 20, 2019 at 6:27 pm

    @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

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