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  • Posted by Charlene Marshall on March 24, 2019 at 7:44 pm

    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. 

    dianaj replied 1 year, 4 months ago 25 Members · 141 Replies
  • 141 Replies
  • leontis-teryazos

    Member
    March 25, 2019 at 10:08 am

    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.

  • Charlene Marshall

    Member
    March 25, 2019 at 8:38 pm

    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.

  • andrew-hall-dc

    Member
    March 27, 2019 at 12:05 pm

    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

     

    • leontis-teryazos

      Member
      March 29, 2019 at 9:11 am

      @drandyhall,

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

      • denny

        Member
        May 28, 2019 at 4:14 pm

        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.

  • Charlene Marshall

    Member
    March 27, 2019 at 7:40 pm

    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.

  • steve-dragoo

    Member
    March 28, 2019 at 11:43 am

    @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

  • shumita-ralli

    Member
    March 28, 2019 at 11:08 pm

    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.

    • Charlene Marshall

      Member
      March 30, 2019 at 7:31 am

      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.

  • ron-johnson

    Member
    March 30, 2019 at 7:26 am

    @shumita,

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

  • Charlene Marshall

    Member
    March 30, 2019 at 7:32 am

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

  • shumita-ralli

    Member
    April 1, 2019 at 3:47 pm

    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

     

     

     

     

     

    • Charlene Marshall

      Member
      April 1, 2019 at 6:13 pm

      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.

  • shumita-ralli

    Member
    April 2, 2019 at 1:01 am

    @charlene Thanks, yes we tried low dosage 🙁

  • Charlene Marshall

    Member
    April 2, 2019 at 11:36 am

    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.

  • steve-dragoo

    Member
    April 2, 2019 at 11:55 am

    @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

  • shumita-ralli

    Member
    April 4, 2019 at 4:07 pm

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

    Shumita

  • marshaharris

    Member
    May 22, 2019 at 6:19 pm

    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…

     

     

    • andrew-hall-dc

      Member
      May 22, 2019 at 8:39 pm

      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

  • Charlene Marshall

    Member
    May 22, 2019 at 6:54 pm

    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.

  • john-styles

    Member
    May 23, 2019 at 5:48 am

    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.

    • dianaj

      Member
      November 2, 2022 at 5:33 pm

      Was acupuncture part of Andy’s protocol, or is it something that you decided to do on your own?

  • stungate

    Member
    May 25, 2019 at 8:57 am

    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.

  • andrew-hall-dc

    Member
    May 25, 2019 at 10:14 am

    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.

    • stungate

      Member
      May 25, 2019 at 10:53 am

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

  • john-styles

    Member
    June 21, 2019 at 5:19 am

    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.

  • steve-dragoo

    Member
    June 21, 2019 at 5:34 am

    @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

     

  • andrew-hall-dc

    Member
    June 21, 2019 at 8:00 am

    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

     

  • piet-potgieter

    Member
    June 21, 2019 at 8:31 am

    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.

    • andrew-hall-dc

      Member
      June 21, 2019 at 10:16 am

      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

  • leontis-teryazos

    Member
    June 21, 2019 at 4:26 pm

    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.

    • andrew-hall-dc

      Member
      June 21, 2019 at 6:20 pm

      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

      • steve-dragoo

        Member
        June 21, 2019 at 7:13 pm

        @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

  • leontis-teryazos

    Member
    June 21, 2019 at 4:28 pm

    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.

    • andrew-hall-dc

      Member
      June 21, 2019 at 6:23 pm

      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

    • steve-dragoo

      Member
      June 21, 2019 at 7:07 pm

      @drandyhall

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

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