This topic contains 174 replies, has 20 voices, and was last updated by  Charlene Marshall 2 days, 10 hours ago.

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  • #17605
     Charlene Marshall 
    Keymaster

    Please continue your wonderful discussions pertaining to laser therapy under this topic. I have closed the laser therapy and laser therapy part II topics, as members have mentioned they’re having a hard time keeping track of posts and contributing their thoughts. In an effort to ensure everyone can find posts as easily as possible (until we get an update from WordPress), I hope this platform can host our ongoing discussions regarding laser therapy.

    As always, thank you for being part of such a wonderful community!
    Charlene.

  • #17612
     Terry Moriarty 
    Participant

    Thanks, Charlene, for keeping this discussion going and keeping it civil and supportive.

    I want to let the group know that a Facebook group has been started “Laser Therapy for Lungs”. The intention is not to take away from PF News discussion here, but to be a bit more private. Plus, bring in others who are on FB, but not here.

    If you want to join, search on the title given above. When you get to the group’s page, select ‘join’. You will have to answer a few question to be approved as a member. That’s the advantage of being a private group. People from both this discussion and one on Inspire who really want to understand the possibility of laser therapy have joined this group. But, there has been cross posting here, so you will still know what’s going on without joining the FB group. I know I will continue to watch both discussions.

    Thanks, Charlene, for letting me post this.

    Terry

    • #17626
       Charlene Marshall 
      Keymaster

      Hi Terry,

      Thanks so much for your kind words, and I am really glad you shared the Facebook group about laser therapy here too! I truly believe that the more information shared, the better it is for all of us. Sadly, there are enough IPF patients to go around, and there needn’t be any concern for “competition” among platforms. Its so important that information sharing exists for the benefit of the patients so I truly thank you for posting this for us all 🙂

      So glad you’re part of this community Terry!
      Warmest regards,
      Charlene.

       

       

      • #17688
         Steve Dragoo 
        Participant

        @tmoriarty

        Hi Terry – I tried to find the group on FB but could not.  John had mentioned it to me and I searched.  Kindly send a friend request on FB. thanks – Steve

  • #17622
     leontis teryazos 
    Participant

    Dr. Hall, ( @drandyhall )

    Seems there was a problem with copy and paste and my post did not show table 2. In any case table 2 shows 6 MWD in meters (mean ± SD) as 30.94 ± 11.52 for baseline and 93.63 ± 29.96 after 10 days of treatment for study group. You can study downloaded if go https//doi.org/10.1016/j.ejcdt.2014.06.012<

    • #17684
       Andrew Hall DC 
      Participant

      Hi Leontis,

      Yes I did see that.  Agreed that 30 meters is next to nothing, esp for a 6 MWT.

      But I can say the results of the study is impressive.

      • #17687
         leontis teryazos 
        Participant

        Dr. Hall,

        I am guessing they could only cover 30 meters because they had to stop and sit down several times but still this part is very strange as patients were not in critical condition. In any case 6 min walking test results are amazing as in the 2018 Egyptian study the group dong the laser therapy went from 24 meters to 52 meters and in the 2014 Egyptian study they went from 30 meters to 93 meters. This laser acupuncture with low level laser. With such impressive results I am wondering if the laser acupuncture method may be more effective than what we are doing now. Doing both would be too time consuming and costly. Please let me know what you think about this as I imagine when you started your own laser therapy 4 yrs ago you probably did not know about these laser acupuncture studies.

      • #18595
         Betty Edwards 
        Participant

        Many of the Laser Therapy posts on this forum talk about a cold laser.  I talked to a Tucson Chiropractor named Dr Parks who has a K 4 laser. He says it is a hot laser that creates heat. He also says there is no Class 4 laser by K that is cold.  Dr Hall, can you please clarify.  I don’t want to start treatment with the wrong kind of laser.

      • #18596
         Andrew Hall DC 
        Participant

        Hello Betty,

        There IS a lot of confusion about ‘cold lasers’, even among the doctors.  Most of the Class IV laser manufacturers don’t want their lasers described as ‘hot’.  And many go by cold laser.  Generally though, a Class III laser that is under 1/2 watt (500 miliwatts) is thought of a a ‘cold laser’.  But rarely will you see a Class IV laser referred to as a ‘hot’ laser.  They usually simply go by ‘Class IV laser’.

        As you probably know, it really does require a Class IV laser with high wattage to get to the lung tissue.  If you keep that laser in one place it can get hot, but if the treatment is correctly applied, what you feel is just a nice healing warmth.

  • #17625
     Charlene Marshall 
    Keymaster

    Hi Leonitis,

    Yes, the formatting because a major problem when you copy and paste information from another source (ie. Microsoft word) into the textbox here. Can you type in your replies in future please, instead of copying and pasting? I had to go through and edit your post again to remove the code / problematic formatting.

    thanks,
    Charlene

  • #17642
     Peter Goodwin 
    Participant

    Quick update on my laser therapy, now completed 9 sessions. Before starting laser I paid for an extra lung function test, knowing I was due for my regular test in March. Pleased to say FEV1 and FVC are up 7% and 4% respectively. 02 remains 2/3% higher than when I started and fatigue is not the problem it was. Still waiting for any improvement to my  breathing.

    • #17685
       Andrew Hall DC 
      Participant

      Peter,

      So happy to have you report postitive changes.  I hope that you find that you breathe easier soon. Glad you have less fatique.  It’s just great that you are heading in the right direction.  Know that we ALL will continue to keep good thoughts for you as you move on with your laser therapy.  Thanks so much for reporting to us, and we will be looking forward to hear how things are going later on!

      Andy

  • #17682
     Charlene Marshall 
    Keymaster

    Hi Peter,

    Oh this is wonderful news, I am so happy to hear of such a positive update on your 9 completed sessions of laser therapy! Also, really great thinking on getting pre/post PFTs to compare after laser. This really has the potential to show a positive difference from laser, and it looks like that was the case for you. Wonderful! Thanks again for sharing, and really happy to hear both your FEV1 and FVC have increased, along with less fatigue. Please us posted on how you continue to improve with the laser, I’m always eager to hear!

    Cheers,
    Charlene.

    • #17699
       leontis teryazos 
      Participant

      Charlene,

      I would suggest if possible you start a new thread called Laser Therapy Results and each one of uses this only to post what results they are getting after laser treatments. Some people are reporting results as PFT, 6 min walk distance, oxysat, exercise tolerance, etc. but it does not matter as all results useful. People not getting any results should also post this although so far no one has said this. This would let us show this thread to our doctors and not have to go through all the other posts. First one to post results was Andy in his original email.

      • #17716
         Charlene Marshall 
        Keymaster

        Hi Leontis,

        Thanks for the suggestion, that is a really good idea! I’ll let folks contribute a bit more to this one and then when I make another discussion group pertaining to laser, I’ll introduce the “Laser Therapy Results” group too, where people can post how laser is benefitting them. I know Steve and Dr. Hall are looking at ways of compiling this  information in future too, so I’ll make sure they haven’t come up with an idea of equal brilliance already and consider doing a new forum soon on laser therapy results. Compiling the information and positive results is really helpful I agree, it would be really easy to then take it to physicians for future patients considering laser. Lets keep this idea in mind, and I’ll chat with Steve and Dr. Hall who are also brainstorming ideas on how to capture this “data”.

        Cheers,
        Charlene.

      • #17761
         Andrew Hall DC 
        Participant

        Hi Leontis,

        I know that Charlene said at one time that we need to keep track of it all.  I said we are doing a study and we will compare PFT’s and CT’s, but of course the results won’t be ready for at least a year. The thing is though a lot of the patients doing laser at present and reporting success aren’t even enrolled in the study.  I’ve been thinking about a way to keep track in the meantime, and I hear back from some patients that are not even on PF News.  But there are SO MANY that report good positive changes. And you are right, I’ve been helping patients with IPF/lung fibrosis for 3 years, and I hear back all the time, and NOT ONCE have I heard that there wasn’t at least some minor improvement.   Another thread on PF News would be great, but then I know poor Charlene is already overwhelmed with everything she has going on. The thing with Charlene is that for her it’s not just the laser therapy thread but ALL THE THREADS.   It takes an amazing lady to do what she is already is doing!!!  Not sure I have a good solution yet but I’m working on it…..  Maybe Charlene would have an idea thats not going to overwhelm her more than she already is.  I worry about her…….

      • #17779
         Charlene Marshall 
        Keymaster

        Hi @drandyhall, @let666, @steve-dragoo

        I hope you’re all having a nice weekend!

        Andy, thanks so much for all of your kind words below about my role with the PF forums. They are a little overwhelming at times, simply because of the growth but I wouldn’t have it any other way. It means the platform is helpful for others, and this is what we set out to do 🙂

        I am completely open to starting a new thread titled Laser Results or something similar, if you think it would be helpful? I know Steve has emailed a Google doc which could be useful in capturing laser results, but I do want everyone to be able to access it from the forums, and I know a lot of people aren’t familiar with Google docs. Maybe we use that platform to compile contact information/service provider details of those using laser (like we’d emailed about Steve) and use the Laser Results new topic thread to capture quantitative and qualitative results from forum users. What are your thoughts?

        The only thing I’d want to be sure of, and this is where I’m hoping the three of you might be able to help me, is I’d like to ensure clear parameters are set for people adding in their results. As an example, maybe we ask people to write in their results after a ‘X’ number of laser treatments, and we ask for those results in certain form (ie. PFT improvements in numbers)? Am I being too specific? Just knowing how quickly the laser threads evolved and grew, I want to make sure the results thread is somewhat organized and consistent so that if someone uses it to bring to their physician, the information is easily able to be followed. What do you think?

        Curious to hear your thoughts, and if it is easier, we can continue this discussion via email if you want? Steve you have my email, but Leontis, it is: [email protected]. Let me know how I can help!

        Thanks,
        Charlene.

      • #17801
         Andrew Hall DC 
        Participant

        Good morning Charlene,

        I think a laser thread called Laser Results would be awesome.  It would solve a lot of logistic issues trying to keep track of it all. I do know that Leontis and Terry Moriarty have expressed that they would not mind being involved in that. Terry and I discussed maybe doing it on my website, but a couple of my concerns is that if people would like to report their improvements, if it’s on my website I don’t need any liability problems as far as the HIPPA laws are concerned. If patients want to voluntarily leave their name on a thread here then we would be HIPPA compliant. They could also use an alias if they wish. The other concern is that I would like these results to be easily accessed by everyone instead of chasing down a Facebook site or private website.  PF News would make it very easy for all.  But honestly Charlene, I know you do have your hands full. I don’t want you to be more stressed out……  But it would be awesome to have it on PF News somewhere.

        I understand what you are saying as far as maybe limiting reporting to just objective changes. But, I think that most patients are already reporting both objective and subjective changes.  Of course the pulmonologists are more likely to take the objective changes into consideration for recommending laser therapy to their patients, I think that the subjective improvements are a big thing too, just like Marsha reporting that I have more energy to clean the apartment and stuff.  This is important because her ‘quality of life’ is improving.  And that’s really what we all want for everyone.  Longer life and better quality of life. And I think it’s important for pulmonologists to see, and the patients can print the thread on improvements for them.

        I do think that it’s also important for the patients to report how many treatments they have had, how they are doing, and then even give updates as time progresses.

        The amazing thing about all of this is that when we consider the SOC (standard of care), meaning treatment by pulmonologists, it is always about drug therapy.  There of course are Ofev and Esbriet, both of which have proven in any patients to slow progression and extend life.  But very few times do we hear about actual objective ‘improvement’ with ANY of the drugs.  I’m not saying that it doesn’t happen, but it certainly doesn’t happen often. We see more ‘improvement’ with pulmonary rehab that has nothing to do with drugs.  The cool thing about laser therapy is that actual ‘improvement’ happens all the time, in fact as you know we have just come to expect it. The question is that how much improvement can we achieve?  It will be awesome to follow so many people and find out. The study we are doing we will find that out, but it will take at least a year or more for the conclusion phase.  I don’t think any of us want to wait that long.  In the meantime, a thread that we can all see showing individual improvement would be awesome!

        Andy

      • #17802
         Steve Dragoo 
        Participant

        @charlene-marshall @drandyhall @let666

        Hi Charlene – the google doc is for the 3 of us to create a doctors panel which could have a “patient results” sub-forum if that would be useful.

        So I really like your idea but I wouldn’t send anyone to the doc – it is only a brainstorming whiteboard to create a great foundation that you and Andy like – so input via the doc or email to us is good regarding the panel – as I am not trying to leave anybody out.

        I only started the doc for seeds to create what you guys want; Andy for other doctors to join and what they might appreciate seeing and learning about, Charlene to keep it as easy as possible for you or your assign to manage, and patients with statistics that are relevant and anything else that is relevant to the laser panel you and Andy want in it.

        If you want more feedback from others regards the panel/sub-panel, then I need to give them access to the google doc or as we have been doing email and c.c. other participants so the conversation is in one place.

        We are headed in the right direction.  So good to help others here…  Thank you  – Steve

      • #17811
         Charlene Marshall 
        Keymaster

        Oh that makes sense Steve, thanks for clarifying!

        Do you think if we created a Laser Therapy Results topic thread on the PF News forums that it would duplicate the work of the Google doc in any way? I just want to ensure we’re not doing that and am open to whichever platform you both think is best to capture improvements of those trying out laser. You or I could transfer any quantitative improvements (ie. patient PFTs) from the new topic thread onto the Google doc, so we have some tangible reports to collect? I think the Google doc could also be dual-purposeful in the sense that we could use a tab to start collecting laser therapy practitioners information, inviting them to contribute to the discussions. This was one of the uses of the Google doc too, right? I have lots on my mind in terms of managing the forums so I may have misunderstood. Let me know if I am on the right track! 🙂

        I hope you’ve had a great day!
        Charlene.

      • #17803
         Steve Dragoo 
        Participant

        @charlene-marshall – I realized I misspelled Andy’s member name in the post above.  Can you change that, please?  would like him to see it. Thank you – Steve

      • #17807
         Charlene Marshall 
        Keymaster

        No problem Steve! I’ve fixed it for you 🙂

      • #17805
         leontis teryazos 
        Participant

        Andy,

        I would suggest to try and keep things simple for the Laser Results thread.

        For example people could report their results after every 5 or 10 treatments.

        Pulmonary function tests are important because they are verified by a third party. One very simple test to is the 6 min walking test, where you record how far you go in yards or meters in 6 minutes. In addition to distance it is useful to record what your oxysat and heart rate are at the end of the 6 minutes. Some people need to use oxygen to do this and if they do they should record what level oxygen they are using. This is what I have been doing with my wife and it is also one of the key results recorded in the Egyptian studies.

      • #17812
         Charlene Marshall 
        Keymaster

        What do the three of you think ( @let666, @steve-dragoo and @drandyhall) about creating some kind of introductory paragraph/sentence about what we’re hoping to achieve with this new Laser Therapy Results thread, and sending it to me via email? It just might provide some guidance to people looking to capture their improvements that way …. open to all suggestions!

        Thanks,
        Charlene.

      • #17810
         Charlene Marshall 
        Keymaster

        Hi Andy,

        All great ideas, and I just emailed Leontis to confirm that setting up a Laser Therapy Results topic thread would be really simple to do, and a contained space where everyone can read the successes members are having. You also raise a really good point about the HIPPA laws, and people voluntarily contributing their results ensures we will be compliant. My only concern with a forum topic as a “house” to the result is that its not easy to upload a document into a topic thread. You can click the “photo” icon at the top, but in  order for the photo to actually load successfully, it needs to be linked to another URL space online. Do you think this might frustrate members, as we may need them to type out their results?

        I am open to members contributing any type of improvement, or positive change: subjective or objective 🙂 I just wonder if some guidance for what we hope for members to post on the new thread would be helpful to those considering posting… thoughts? Between the three of us ( @let666, @steve-dragoo and yourself) perhaps we could come up with a brief introductory sentence or two about what we’re hoping to achieve with the new Laser Therapy Results topic thread? Do one of you want to email me a blurb of what you hope to capture using the new topic thread? I think you all have more knowledge of it than I do, and it would help in terms of workload. I would then use that quick introductory sentence/paragraph to introduce the new topic thread…

        I too think this could be really beneficial for pulmonolgists to read/see first hand that other patients are responding so well in terms of quality of life. I think you’re all onto something!

        Let me know your thoughts, and I could get the new topic thread up as early as Monday. My co-moderator has a good topic scheduled for tomorrow (Sunday) and then I can coordinate getting a Laser Therapy Results topic up, no problem. Thanks for your willingness to help us all!

        Charlene.

      • #17819
         Andrew Hall DC 
        Participant

        Hi Charlene, Steve, Leontis, and I would like to keep Terry in the loop.

        I just got the email from Leontis, very good.  However, I think that reporting at 10 and 20 treatment levels might be a little difficult for some people to keep track of.  It would be kind of nice to hear of positive changes even after the 3rd or 4th treatment, as we hear already of patients reporting less severe and frequent cough, and early increases in oximeter readings.  I think that the ‘scientist’ part of some of us may kind overwhelm some patients, and I don’t know that everyone doing laser therapy is going to want to do a 6 MWT or whatever.  It would be great if that were the case, but I would like to have EVERYONE report what they are feeling and not be pressured to do something they are not comfortable with.  In other words, I don’t think we should come off with either do a 6 MWT or don’t bother….. Some patients may just be more comfortable with monitoring their resting O2 levels. I’m really ok with that, but of course like all of us I would like more ‘meat’ as in a walk test or whatever.  It would be awesome to hear about everyones PFT results, but some patients don’t get them done for as long as a year.  But I also think Leontis is right, they don’t have to send the entire document, just forward the main things and how they might have changed.  I think being ‘too stuctured’ may be a mistake.  I just want everyone to feel comfortable reporting how they are doing, or even ‘not doing’.  As I say, I still haven’t heard anyone yet say that laser therapy did not help in one way or another. If that happens, and it probably will sometime, I want to know about it.

        Maybe we could suggest that the patient try to report every two weeks as opposed to X number of treatments, but have them tell us how many treatments they have had to that date.  Just ideas I wanted to throw out there.

        For now, I have to say I really like Leontis’ statement for the beginning of the new thread.  Keeping it simple is really a good thing.  Having a google doc to go with it would be great too.  I just think that if the patients can easily make a copy of it to present to their pulmonologist we might see more acceptance for laser therapy by them.  And to have the treating doctors monitor it, it will help also. They too need confidence that what they are doing is not a waste of their time.

      • #17821
         leontis teryazos 
        Participant

        Dr. Hall,

        What I meant was to give us results AFTER 10 treatments and then again after 20 treatments. It would be  too much to have people give results every few days.

        As you suggest could also be every 2 weeks but then to be meaningful would need to know how many treatments so that is why thought simpler to do it after every number of treatments. Other thing forgot to mention is that if reporting 6 min walk test should include if using oxygen and at what level. In any case we should finalize all this using Dr. Hall’s next input.

      • #17822
         Andrew Hall DC 
        Participant

        Hi Leontis,

        I really am flattered that you value my opinion so much.  The truth is that I’m new to this kind of thing, that being setting up a new thread, etc.

        I think that you are right about the patient reporting after 10 and 20 treatments, and perhaps every 10 after that.  On thing though that I would be very interested in is how the patient is doing very early on, say after the first 5 treatments. The reason is because when treating musculoskeletal and neurological conditions, when the patient is put on a treatment plan, the first few (4-5) gives you a very good idea of how the patient will do over the course of the treatment plan. This is true for example treating a chronic shoulder problem or fairly acute Bell’s Palsy case.  So, I would like to hear about early changes like my resting O2 has gone from 94 to 96, and I seem to have more stamina.  Then at 10 treatments, we can see what other changes take place and again at 20 and so forth.

        I also agree about the need with a 6MWT to report the O2 that the patient is using.

      • #17824
         leontis teryazos 
        Participant

        Andy,

        You make good points so how about wording for introductory message to be something like.

        This is a new thread and is should be used only to post results or opinions on your health after for before and after laser treatments.

        We suggest you report your results after 5, 10 and 20 treatments.

        Pulmonary function tests results are important because they are verified by a third party. One very simple test you can do is the 6 min walking test, where you record how far you go in yards or meters in 6 minutes. In addition to distance it is useful to record what your oxysat and heart rate are at the end of the 6 minutes. Some people need to use oxygen to do this and if they do they should record what level oxygen they are using. In addition you should report any general comments you have about if you feel better and can do more things than you could before. Lastly if you do not feel better or feel worse or can do less than you did before you should also report this. We look forward to hearing from any of you doing laser therapy.

         

  • #17691
     Steve Dragoo 
    Participant

    Good posts.  I go for number 10 Friday but the first three were at the wrong protocol.  Having good results and look forward to my next breathing tests.  @Want to add serrapeptase and a good B complex vitamin have significantly helped energy and mucus – now if I can just get rid of the dry cough… Steve

    • #17724
       leontis teryazos 
      Participant

      Steve,

      Would be interested to know how much Serrapeptase you are taking to get these good results

  • #17700
     Terry Moriarty 
    Participant

    Steve, I found a bunch of Steve Dragoo on FB. You’ll need to narrow it down for me.

    When I select Groups and put in Laser Therapy for search criteria, the group shows up.

    • #17734
       Steve Dragoo 
      Participant

      Hi Leontis – I started nid-December with 120000 SU (not IU) daily in 2 doses.  Now at 320000 SU daily headed to 500000 SU in a couple more weeks.  I have discovered it’s good to stay away from any food and maybe especially meds for at least 2 hours before and after. If you take any time release meds with 3 or 4 hours like I do.  It is very safe and one member told me yesterday his pulmonologist recommended it for lung mucus.

      STeve

  • #17701
     Steve Dragoo 
    Participant

    @tmoriarty

    Terry – Click on my picture here it is my facebook page pic.

  • #17725
     Floyd C Montgomery 
    Participant

    I simply cannot find anyone in the Lancaster, PA area that can or will do laser treatment. There are 2 Chiropractic practices that advertise having levrl IV lasers, but neither have responded to any inquiries I sent them. What would you suggest I to try to find someone to do the laser treatment?

    • #17750
       Charlene Marshall 
      Keymaster

      Hi Floyd,

      Sorry to hear you’re having trouble locating a laser provider near you. Not sure if you’ve tried this yet, but if you go to Dr. Hall’s website ( http://summit-chiropractic.com/laser/class_iv_laser.asp ) there is a spot on there where you can type in your Zip code to hopefully find someone near you. Or, @drandyhall might be able to help you but we know he is really busy with inquiries flowing in from all over the world. Not sure if this helps?

      Charlene.

    • #17760
       Andrew Hall DC 
      Participant

      Hi Floyd,

      I did some checking, and yes there are 2 DC’s and a podiatrist within 25 miles of you.  Seems strange they won’t return your calls. But if you extend to 50 miles there are a LOT of providers, in fact 13 that are not podiatrists.

      I assume you are using the K-laser provider service?  If you need some help please let me know.

  • #17730
     Peter Goodwin 
    Participant

    For those considering serrapeptase please be aware this will prevent blood clotting. However, if you’re on warfarin, clopidogrel, asprin or other blood thinners, it may not be a good idea to take serrapeptase as well. See your doctor first. You should also not take it 2 weeks before surgery.

    • #17735
       Steve Dragoo 
      Participant

      Hi Floyd – go farther out to look also call them if you know the protocol and that will depend on the type of K-laser, manual/no manual settings. I kep looking to because new providers may be found.

      I even looked for veterinarians that specialize with West Highland Terriers because they are prone to IPF.  Maybe Andy can contact the two for you???

  • #17732
     Steve Dragoo 
    Participant

    @petergoodwin

    Serrapeptase does not prevent blood clotting however it might – emphasis might thin the blood and clean it – it dissolves dead protein and that’s pretty much it.  The dose you take matters and I am using 320000 SU daily headed to 500000 SU.

    Just yesterday a member here was going to ask his pulmonologist about it but when he mentioned his lung mucus the doctor suggested serrapeptase. Of course, using it with other drugs should be researched at WebMd or similar.  You need to take it by itself and nothing before or after at least 2 hours 0r as I do 3 or 4 hours.  And do not take it with any other meds as that is dead protein meaning it will dissolve faster.

    Nattokinase, on the other hand, has many benefits and can thin the blood but does not stop clotting either.  It is fermented soy with the vitamin K2 generally removed and the soy is changed significantly too.

    • #17740
       Peter Goodwin 
      Participant

      Thanks Steve.  A little complicated as I’m also on clopidogrel but serrapetase does appear to have many benefits.

      I’ll ask my Doc if I can substitute the clopidogrel with serrapetase. Not sure I’ll ever be brave enough to take 500,000 su’s though.

  • #17742
     Steve Dragoo 
    Participant

    Peter – I am not recommending any dosage because it depends some on your body.  Serrapeptase can cause a little nausea if you take it too close to food or meds and also because at first, it acts a little as a detox.  It is a blood cleaner and reportedly a scar tissue reducer but not sure if that works that way in the lungs.  Something really safe for almost anybody is autophagy- your body self cleans when you fast and generally recycles it.  I will start doing both and I take nattokinase plus other stuff that helps too.

  • #17722
     Terry Moriarty 
    Participant

    Steve,

    This is so frustrating. I found you on FB, but can’t friend you. Can friens the other Steve Dragoo, but not you. I’m an FB newbee.

    Here’s the link I think will work For the FB group.

    https://www.facebook.com/groups/259133335009145/?ref=gs&fref=gs&dti=259133335009145&hc_location=group

  • #17746
     Charlene Marshall 
    Keymaster

    Hopefully @steve-dragoo can help @tmoriarty 🙂
    Thanks for sharing the Facebook group link, it might be easier for the two of you to connect on Facebook through that group, as it likely won’t have more than one Steve Dragoo in it!

    Chat soon,
    Charlene.

  • #17759
     Marsha 
    Participant

    Hi, Andy @drandyhall!  Just checking to be sure you received the test results I mailed to you.  If you have, no need to respond!

    I saw Dr. Cebek this morning (#9).  I am feeling so good that I was able to even do some apt. cleaning yesterday (without even needing to raise my oxygen to a higher level during exertion)!!   Of course I am extremely careful not to overdo it and take little breaks if I need it.

    I hope you and dear Charlene @charlene-marshall are also taking little breaks at least to smell the beautiful roses you both are working so many hours each day to nurture and tend.  (I am the coral one, fifth row back, second from the left!)

    Blessings and love to you!  Marsha

     

    • #17771
       leontis teryazos 
      Participant

      Marsha,

      If possible could you please let us know in simple terms what improvements you had in these tests. We are trying to keep track of actual results anybody has when doing the treatments as this is very useful for our own confidence and also convincing doctors to support doing this.

       

      • #17780
         Charlene Marshall 
        Keymaster

        Just chiming in here to tag Marsha ( @marshaharris ) for you Leontis. Sometimes the forum threads get too big and difficult to follow 🙂

        Charlene

  • #17820
     Terry Moriarty 
    Participant

    In case you didn’t see, the laser therapy discussion on Inspire has been shut down. I hope that those interest k ow to come here or to the FB group. Charlene, Thanks so much for your unbias monitoring of this discussion.

    • #17831
       Charlene Marshall 
      Keymaster

      Hi Terry,

      Wow, I didn’t know this as I am not part of that group… how awful. I’m sad to hear that this platform has been shut down for people wanting to discuss laser as an alternative therapy. I’m proud this thread remains open for people to contribute to, and in an unbias way. We’re all just trying to do our best, and I feel sad that a platform engaging patients with IPF/PF would shut that down. Hopefully folks know to come here to discuss it if they wish, or to just “listen in”… that is okay too. All are welcome 🙂

      Charlene.

      • #17833
         Terry Moriarty 
        Participant

        Someone gave a status report. budhenry jumped on that person, as expected. Someone else responded a bit harshly to budhenry and it was over. I don’t know who reported the thread to the Inspire administrator, but it’s unfortunate that they didn’t “reprimand” individual offenders, rather than punishing all of us.

        Hopefully, those interested in this discussion have moved to your conversation here and/or to the FB group.

      • #17853
         Charlene Marshall 
        Keymaster

        Hi Terry,

        Thanks for letting me know about this and I completely agree with you – it should have been the individuals causing problems or not respecting one another’s conversation that was reprimanded, not the whole discussion where others might have been benefitting. It’s a really interesting topic because I know folks are still skeptical, especially since it isn’t anything supported in the literature yet, but I just can’t understand why others have to offer their negative opinions when someone is finding it helpful for the management of their symptoms. If it is helpful and folks can afford it, who is someone else to say they shouldn’t try something, right? This is what I just can’t wrap my brain around… what other choice do we have? This is why it’s so important for me to leave this topic thread open because it is simply a discussion platform. Sad that it ended the way it did on the Inspire forums, especially for members who were finding it beneficial. Thanks for letting me know!

        Charlene.

  • #17825
     Terry Moriarty 
    Participant

    Hi all,

    I’ve reached the point where I can’t read any of the organizational comments because I use a Surface tablet and the indentation the PF News website uses for replies eventually hides them from me.

    I volunteered to collect all the responses and put them into a spreadsheet, primarily so we can analyze for trends across the group. There will be multiple sources of responses: PF News (here), the FB group and people communicating directly with Dr. Hall.

    I think there may be a privacy concern to be considered. Not everyone may be comfortable posting their results publically. Charlene, is there any way to make the results discussion private? Even though the FB group is private, we know that FB itself doesn’t really respect its members privacy. For these reasons, I think individuals should report their results through a private channel, possibly by email to Dr. Hall’s website. Then, I can collect the data and, periodically, provide a report of trends by different criteria Dr. Andy selects. If I’m the only one concerned about privacy, I’m happy to collect the data through whatever transmission means you select.

    Thanks, Terry

    • #17827
       Andrew Hall DC 
      Participant

      Terry,

      I agree that some may not be comfortable as far as privacy concerns. It would be nice to be able to have an alias or something for those few that do have concerns.

  • #17826
     Terry Moriarty 
    Participant

    A clarification about the 6 minute walk.

    It’s primary purpose in the US is to determine how much oxygen a person needs. The test is done by starting with no oxygen. If the O2 level drops to 88%, the test is paused for the person to recover and get back to normal O2 level. Then the person is put on oxygen (usually 2 lpm) and the walk is repeated. If the O2 level drops to 88 again, the process is repeated, gradually increasing the lpm, until O2 stays above 88. That’s the lpm that becomes your prescription. I’ve only had one place record the distance I went.

    So it’s a good thing to track your distance during the 6mw, but it is essential for Dr. Andy’s study to track the change in oxygen level from one test to another. And to follow the procedure of stopping to rest, restore and increase your oxygen lpm, so he knows your highest and lowest O2 level during the walk. I think this is what the researchers Dr. Andy is hoping to attract will be expecting to see.

    • #17828
       Terry Moriarty 
      Participant

      I planned to assign a unique id to each person. Just a remnant of my database design career. It’s just what we automatically do <g>. Hard to break old habits.

  • #17829
     Charlene Marshall 
    Keymaster

    Hi All ( @tmoriarty, @drandyhall, @let666 & @steve-dragoo)

    I’m really sorry to admit that I am feeling pretty lost and a bit overwhelmed with this idea now. There are lots of discussions going on about this, great ones, but I fear “too many hands are in the pot now” and it isn’t clear for me what I need to be doing.

    Can we please correspond to make a plan via email? The forums platform, once too many replies are linked to one person’s comment, tend to narrow the responses making it hard to read. I also think the more it this is discussed out in the open, the more people might want to join in, which is fantastic but not helpful in the initial stages when we’re trying to organize how to proceed.

    I can start a topic new topic called Laser Therapy Results tomorrow (Monday), no problem and make the description exactly what Leontis shared, which is (verbatim):

    This is a new thread and is should be used only to post results or opinions on your health after for before and after laser treatments.

    We suggest you report your results after 5, 10 and 20 treatments.

    Pulmonary function tests results are important because they are verified by a third party. One very simple test you can do is the 6 min walking test, where you record how far you go in yards or meters in 6 minutes. In addition to distance it is useful to record what your oxysat and heart rate are at the end of the 6 minutes. Some people need to use oxygen to do this and if they do they should record what level oxygen they are using. In addition you should report any general comments you have about if you feel better and can do more things than you could before. Lastly if you do not feel better or feel worse or can do less than you did before you should also report this. We look forward to hearing from any of you doing laser therapy.

    Are we in agreement with this to start? Then others can let me know what else I need to do. I don’t think we can make this new topic thread private Terry, the forums aren’t meant to be for private discussions which is why I hope if people volunteer to add their results, they know it isn’t going to be anonymous. We also need to be really careful (in fact, I don’t really think we should be doing this…) with taking people’s results offline and compiling it into any type of spreadsheet/data, because if that is shared with anyone, it is technically a breach of privacy unless we have everyone’s written permission to do that.

    What are your thoughts?

    Charlene.

     

    • #17834
       Terry Moriarty 
      Participant

      I agree we should move to email to plan the process. One person send out the initial email and we all do reply all to that. Could you be the central point for these emails, Charlene?

      I don’t think the base spreadsheet with individual results be shares. Only the analysis Dr. Andy needs from it, such as average, mean and medium changes in collected data points, such as PFT (FVC, FEV1, TLC, DLCO), CT scans (changes in grown glass opacity, honeycombing), 6mw(oxygen lpm, distance), general feelings regarding improvements or lack thereof.  These are the indications of progression for HP.  Are there others for IPF?

      I think anyone providing information about their treatment should register for Dr. Andy’s study. Signing up would be providing an agreement to collect this information. Is that correct, Dr. Andy?

      • #17835
         Andrew Hall DC 
        Participant

        Terry,

        Please send me your email address.   [email protected]

      • #17854
         Charlene Marshall 
        Keymaster

        Hi @tmoriarty,

        I’d be happy to do this for all of us, and continue this discussion via email. Did you get my direct message for your email address? Once I have it (and your permission to share it with the 4 people involved in this discussion) then I’ll connect us all via email.

        I don’t think signing up for Dr. Hall’s study would automatically assume permission for us to use the information they post here in any type of data collection, I’d have to check that out. Then again, maybe the way to actually go is encourage folks that contribute to the new Laser Therapy Results thread to join Dr. Hall’s ( @drandyhall ) study for the data collation. Thoughts? Anyway, let’s chat over email, really good stuff here. Either send me your email or Dr. Hall and we can get something started 🙂

        Hope you’re having a nice week!
        Charlene.

  • #17847
     Tom Dowell 
    Participant

    My name is Tom Dowell and I am 79. I was diagnosed with IPF in Dec 2018 but I started losing lung capacity in 2017. I started laser treatment with Hanks Chiropractic in Dallas. Hank contacted Dr Hall and obtained the process from him. I have completed 11 treatments and have seen some improvement. I had a spirometry test in oct 2018,jan 2019 and march 2019. The march test was after 7 laser treatments. In order the FVC results were 2.12,1.87 and 1.91. The FEV1 results were 1.74,1.50 and 1.56. From oct to jan there was significant decline and improvement after starting the laser treatment

    • #17855
       Charlene Marshall 
      Keymaster

      Hi Tom,

      Thanks so much for getting in touch with us, and sharing a bit of your story! Sorry to hear of your diagnosis, and symptoms dating back to 2017. Did it take them long to figure out it was IPF? I hope they’re getting better at this, as I know it can take a long time for patients to get an accurate diagnosis, and then a good disease management plan. Really interesting to hear of your results after 7 laser treatments — with numbers like this, I do find it hard to be skeptical, it seems like improvement is pretty consistent. Thanks for sharing this quantitative data, this is what we need to help others see improvements if they’re considering laser. I know it isn’t for everyone, and I am not encouraging/implying that, but it would be so nice to have a resource for people to see quantitative results IF they do want to consider laser. Thanks again for sharing — wer’e working on a way to collate the data for folks, do you mind if I reach back out you as you continue your treatments? So glad you’re part of our forums community!

      Charlene.

  • #17850
     Michael Lamkin 
    Participant

    I’m guessing that most IPF/PF patients won’t participate in the laser therapy treatments simply because their insurance won’t pay for the treatments. Most patients are probably already financially strained by no longer being able to work.

  • #17856
     Charlene Marshall 
    Keymaster

    Hi Michael,

    Thanks for sharing this really important point, I do think you’re unfortunately correct… it could be a long time before (if ever) insurance covers the treatments, and there are so many financial burdens patients already go through when dealing with this disease and not being able to work any longer. This really saddens me. Maybe some day it could be considered an alternative therapy and would be covered? Wishful thinking I suppose….

    I hope you’re doing as well as possible, it’s been awhile and is really nice to hear from you!
    Charlene.

  • #17878
     Jack Blum 
    Participant

    Hi Terry Moriarty

    Six Minute Walk Clarification

    I have had 12 six minute walks over four years by 4 different institutions. Only once was the test done as you explained in your post. All four places did the test differently. What is the standard? I was approved by St Joseph Hospital in Phoenix AZ two years ago for transplant, when my disease determines I need it. All of my 6 minute walks since 2017 (2 per year) have been done by them and your vitals are taken before and after and you are told to walk as far as you can and stop and rest if needed. Vitals are recorded and the distance is recorded. Are there different standards nationwide? I have yet to find a standard that everyone agrees to. I am not saying either way is the correct way. What I am saying is the results from the two different ways are totally different and how can we compare everyone’s results if the standard for the test is different.

    • #17879
       Terry Moriarty 
      Participant

      I totally agree, Jack. There is no standard for the 6 minute walk. Like you, I’ve done many (8) over 12 years. Two tests were at different COEs. All but one just walked me around for 6 minutes or until my oxygen level dropped to 88. Then they restarted the test using more lpms. In only one case did they make a point of recording the distance.

      Which was my point. If people are going to do a 6mw as one of their benchmarks for progress in Dr. Andy’s study, it is essential that the maximum oxygen level be recorded and it be determined in a systematic way. Pushing themselves to walk farther on insufficient oxygen to show progress probably would not be a good thing.

    • #17887
       leontis teryazos 
      Participant

      Jack,

      Further to Terry’s reply would mention that have been recording 6 min walks for my wife, who has IPF. We determined at start she needs 3L oxygen to keep oxysat at 90 during test so doing all 6 min walks with 3L oxygen. In order to figure out if improving it is important to keep doing all 6 min walks you record at same oxygen level so that is pretty simple. As Terry said very important you use oxygen level that keeps your oxysat above 88.

    • #17901
       Charlene Marshall 
      Keymaster

      Hi Jack,

      Thanks for getting in touch regarding this topic and the standard of care/best practices for the 6MWT. Unfortunately, it doesn’t seem as though this exists and many different facilities do it all a little differently, although in tandem with one another mostly; some small differences seem to occur with each centre. This worries me a bit, but alas, the most important thing is that the test is yielding accurate results for patients I suppose. It certainly is a good question Jack of how can we compare or cross-reference the results of other patients if the process of obtaining them differs…

      Just pondering this myself this morning and taking notes of what other facilities seem to do regarding the 6MWT as I have this coming up and want to ensure it is done as thoroughly as possible. Thanks for sharing your thoughts Jack, and hope this message finds you doing as well as possible. Its nice to hear from you!

      Charlene.

      • #17916
         leontis teryazos 
        Participant

        Charlene,

        As regards the 6 minute walking test it is very important not to over complicate this.

        All that matters is that each person who want to use this to measure improvement does it the same way each time. It is not important that everybody does it the same way.

        For example I use it by walking indoors from one end of our apartment to the other, which is 15 yards and having the oxygen set at 3L. By doing it the same way each time you can see if distance being covered is improving or not and what oxysat and heart rate at end of walk. It does not matter how someone else is doing it as we are not measuring  ourselves against each other.

      • #17949
         Charlene Marshall 
        Keymaster

        Great advice Leontis, thank you for the reminder. I love how you said we’re not measuring our success against anyone else but ourselves, so what is important is focusing on how we do the 6MWT and what our results show 🙂

  • #17886
     John Marshall 
    Participant

    Hi generally and @tmoriarty. What devices are you using to measure O2 levels and FEV1 etc?

    • #17888
       Terry Moriarty 
      Participant

      Hi John,

      Oxygen levels are measured by an oximeter. You can easily get one from Amazon.  FEV1, FVC, TLC and DLCO are stats on a PFT. Your pulmonologist should go over these stats when reviewing your PFT. You should be able to get a copy of your PFT results from the lab that did the test. Only one place tried to charge for it. My Dr. handed me his copy when I let him know.

  • #17902
     Charlene Marshall 
    Keymaster

    Thank you for getting back to John, Terry — I am so appreciative of folks helping one another on this site, especially when I am away as I was this weekend. Very appreciative of you Terry 🙂

    @john-marshall, did this answer the question you needed? Feel free to let us know if we can help by providing more information.

    Cheers,
    Charlene.

  • #17958
     Michael Lamkin 
    Participant

    Hi Charlene

    Thanks for your reply to my post a week ago regarding the laser therapy study and the financial burden placed on IPF patients since insurance companies don’t cover the cost. I saw my doctor today and she said that normally where truly unbiased studies are conducted by doctors there is no charge to the patient for treatments. Although she had heard of laser treatments she didn’t seem to have an opinion either way regarding their effectiveness I’ll keep following this forum to see if any kind of meaning measurable results are reported as I do find the laser treatment therapy interesting.

    I hope all is well with you and everyone else on these forums!

     

    • This reply was modified 4 weeks, 1 day ago by  Charlene Marshall. Reason: formatting
  • #17960
     Charlene Marshall 
    Keymaster

    Hi Michael,

    Great to hear from you as always, thanks for writing! I think your doctor is likely right about the treatments that are free of charge; usually this includes studies and clinical trials too. I think it is great news even that she, as a physician, had heard of laser therapy and didn’t automatically decline its effectiveness… sounds like a good start. Admittedly, laser isn’t for everyone but something I am keeping a “pulse” on by following the conversations in this forum too. We’re working on a way to see if we can produce quantitative, evidence-based results of the laser therapy although the idea is still in its infancy. Even if it helps someone make an informed decision, I consider that a bonus!

    Thanks again for sharing and I hope things are going well with you also.
    Charlene

  • #18221
     Thom 
    Participant

    I’m curious to know what the pulmonologist are saying about cold laser therapy. So far I have not read anything. When I mentioned it to my doctor he actually seemed annoyed that I would even bring it up, his reply was if it’s not FDA-approved I’m not interested. Has anyone’s pulmonologist seeing the results so far of the use of the cold laser. Thank you Tom

    • #18222
       Andrew Hall DC 
      Participant

      Hi Thom,

      What I have found is that the attitudes are all over the chart.  A few of them are opposed to anything but strictly allopathic care, but the ones that really do some research or learn about think that it has good promise.  Pulmonologists don’t have laser therapy as part of their study and most know nothing about it.  What is interesting is that I know of 5 doctors and a Pharmacist that are all doing laser therapy for their IPF, but they have all done their homework…….

       

      • #18228
         Charlene Marshall 
        Keymaster

        Hi Andy,

        Great response for Thom, thanks for replying to him and I hope it helps a bit @thom. I’m not surprised about your physician’s reaction to laser therapy and almost seeming “annoyed” that it was brought up. This is very unfortunate, but I also understand the scope of what they’re working in (not to mention the amount of work Doctor’s have now a days) and wanting treatments to be grounded in literature or FDA-approved. Do I agree? Not really but I certainly understand where they’re coming from. What is unique about cold laser therapy from what I understand is that it is so new, there simply isn’t the research on it yet but I soon hope that will change. I am not endorsing it (I don’t do it myself yet either), just replying with a perspective that I can understand where your pulmonologist is coming from. I do wish more of them could talk to patients who are finding the laser therapy beneficial, as there are lots of people in this situation! Ultimately right now, the decision about whether or not to look into laser is uniquely up to the patient. Feel free to ask any more questions if you have them here, folks are so wonderful and willing to help.

        Cheers,
        Charlene.

  • #18223
     john styles 
    Participant

    my two pulmonologist ignored the laser results. If it is not drugs they are not interested and they can not wrap their head around that the laser may work.  I have completed 12 weeks of laser treatments and 26 treatments and now I am doing one treatment a week.  I have had two pulmonary function tests by two different pulmonologists  at week 8 and week 12 of doing laser and both showed the same results. IMPROVEMENT! I was in steady decline last year, now I have sustained results,  so I am thrilled to have improvement. Saturation’s have also improved by 2 points.  Sad but with laser the reality is there is no big money to be made by the drug company’s who develop the drugs, also  the laser is not approved by FDA for lung treatment.

    • #18229
       Charlene Marshall 
      Keymaster

      Thanks for sharing John!
      I am trying to think whether or not I should copy/paste, or ask you to duplicate your reply to Thom into the Laser Therapy Results thread as you’ve outlined some positive results: improvement! What do you think?

      Charlene.

    • #18261
       leontis teryazos 
      Participant

      John ( @caneelbay1 )

      Wondering if you let us know some specifics about your Lung Fuction Test improvements. Whatever you are comfortable with letting us know.

  • #18224
     David Swain 
    Participant

    Hello @drandyhall.

    As you know this discussion about Laser Therapy started while I was on holiday in New Zealand and with your help I was able to find a chiropractic doctor near my home in England and have started treatments since returning. So far I have had 4 treatments using a protocol provided by K Laser. The frequencies are marginally different to those suggested by yourself. They are 660, 800, 905 & 970nm, with a pulse frequency time frame of 45sec at 10W. I receive 4 minutes each side front and back (total 16 mins). Please can you tell me if this is acceptible, or should I request a change?

    I saw my pulmonologist last Friday and sadly my test results showed a slight deterioration, although I feel pretty much the same. I will see him again in 4 months. The test measurements will give me a baseline for the laser treatment, as I have had only 4 treatments before the tests. I am pleased to say that my pulmonologist is quite open to alternative therapies and said he would read the copy of your paper, which I gave him. His main concern was that it was safe and I wouldn’t be harmed by the radiation.

    Thanks for all your help and maybe others will be interested in your reply.

    • #18225
       Andrew Hall DC 
      Participant

      Hi David,

      Glad you made it home safe from New Zealand, I’m sure it was wonderful to spend time with your son.

      The 660, 800, 905, and 970nm are actually the wavelengths that the diodes are at.  And they are great, will work remarkably well.  The nice thing is that there are 4 of them and covers all the bases as far as what they are best suited for.  Depending on the actual Hz or frequncies that are being used, 16 total minutes could be very acceptable.  If you are being treated at CW, (or continuous wave), you are probably getting more joules per treatment than what you really need.

      It’s great that you just had a PFT, even though the slight deterioration of course is not good, but you are right as that it will give you a good baseline for checking again after a course of laser treatment in 4 months.  I’m glad your pulmonologist is open to the idea of laser therapy.  They do seem more open in England and Europe than in the US, but again, most of them in the US don’t know anything about laser, where in England and Europe laser therapy has been ‘mainstream’ for so many problems for decades before being introduced in the US, so more pulmonologists are familiar with it.  Of course it’s safe, and it’s just different wavelengths of light as opposed to some type of ‘radiation’ as in X-ray or Gamma radiation.

      Again David, so glad you are able to start laser, and will look forward to hearing some reports from you as treatment continues!

       

    • #18230
       Charlene Marshall 
      Keymaster

      Welcome home David! I’m hoping the long flight back was uneventful for you?
      Glad you were able to spend that time with your son, and also connect with a laser therapy provider as I know this was something you were interested in seeking out.

      Great to have a baseline for the laser, although sorry the PFT showed a slight decline. Do keep us posted on future test results, and even how you’re feeling as you continue with the laser. I’m glad Dr. Hall responded to you below as well, hope you found comfort in his reply.

      Take care,
      Charlene.

  • #18226
     john styles 
    Participant

    I to am watching my lung function tests,  last year I had steady decline with the last test November 13 2018. I wonder how much I had declined from November 13 to start of laser January 17.  When I did the lung function test March 7 2019 I had improvement  and sustained improvement on April 5.  Now I hope for the same results in October.

  • #18227
     Charlene Marshall 
    Keymaster

    Hi John,

    I sure hope you see positive results in October as well, that is great news! Do you get a copy of your PFT reports at all? I wonder if you might share with us the differences in your FEV1 from January to March tests? Not a problem if you don’t know/want to share the exact number, it just would be so nice seeing some quantitative improvement for folks in our new Laser Therapy Results thread: https://pulmonaryfibrosisnews.com/forums/forums/topic/laser-therapy-results/

    Hoping you continue to feel well John – thanks as always for connecting!
    Charlene.

  • #18240
     David Swain 
    Participant

    Hi Charlene,

    Yes, we had a lovely time with our New Zealand Family. It was so nice to stay for two full months to really get to know our two lovely granddaughters. We are hoping to go again in a years time, God Willing. I’m happy to say that the long flights back were uneventful and I didn’t feel any ill effects, even though my O2 levels were in the 80s. I’m not on oxygen, but my body seems to be able to function normally at reduced levels. Maybe it’s due to the Mitochondrial therapy supplements I take. The journey was helped by a nights stopover in a hotel in Seoul, compliments of Korean Air. Also, flighing Business Class was a big help. This is expensive , but we found a special offer.

    I’m excited to have started Laser Therapy and very positive about the results thanks to Andy, John Styles @johnstyles and the others who have reported.

    I do hope thinks are OK with you. You will be getting excited about your upcoming visit to Hawaii. A holiday does us all good!

  • #18284
     Charlene Marshall 
    Keymaster

    Hi David,

    Thanks for writing back, and so glad your time in New Zealand was lovely with your family. Being alongside our family members can really do a lot of good for our soul and the beauty of NZ I am sure just makes it that much better. Really glad your flight was uneventful too! Was your flight delayed at all, is that why you spent the night compliments of Korean Air?

    Is the laser therapy continuing to go well for you?

    I am doing pretty well also, thank you for asking. This week has been a bit chaotic as I ended up getting a new vehicle sooner than I expected so I’ve been busy coordinating that and then I am going away with some friends this weekend so we’re leaving at 4 am tomorrow morning. Just a really busy week but a “slower” day today which will be nice to give my system some rest before a busy weekend ahead. Once home from this mini-vacay, I will be starting to plan Hawaii so that will be fun. Thanks kindly for asking how I am 🙂

    Take care and I hope you continue to find success with laser.
    Charlene.

  • #18333
     David Swain 
    Participant

    Hi Charlene,

    It’s always nice to hear from you and particularly that you are doing OK. You seem to have a really busy life considering that you are working. Long may it continue!

    No, the flight wasn’t delayed. Everything uneventful and on time in the respect. The complimentary night in a 5* hotel in Seoul was just part of the back to back flight deal from Korean Air. We actually flew business class with a special deal. This was a big help and I would highly recommend if for long haul flights if funds allow.

    Ive had just 6 laser therapy treatments, over 2 weeks. My cough has reduced and I seem to have more energy, although this my be due to going to the gym 3 times a week and walking 3 miles a day, other days. O2 levels may also be marginally higher, but the only comparable measures ar my resting O2. Its early days yet.

    For me, life is very full; particularly with visits to the gym and the laser treatments. Also, visiting friends and church activities are very important. As you will gather, I’m not much incapacitated and the only time I’m aware that I have IPF is walking uphill.

    Take care of yourself Charlene. Thanks for all you do for the forum.

    • #18404
       Charlene Marshall 
      Keymaster

      Hi David,

      Thanks so much for your kind words! I just returned home from a mini-vacation this weekend and think I pushed myself a little too hard with the length of driving I did today — I crossed into the next province. It’ll take me a few days to recover from this trip I think. I hope the ability to be busy and participate in all the things I love also continues for a long time, although I do feel it slowly getting harder and harder…

      Really glad the flight was uneventful and that you were able to enjoy a night in a 5* hotel en route home. This would allow you to rest quite a bit better I would imagine, as opposed to sleeping on the plane 🙂

      Awesome to hear you feel like you’re getting some benefit from the laser treatments despite it being early, that is good news. I hope that continues for you as I know the days are still early yet. Best wishes for continued health and not really noticing IPF other than uphill walking. Kudos to you for being so active, I know that is difficult with this disease.

      Take good care and thanks again for your kind words.
      Charlene.

      • #18418
         george connell 
        Participant

        Hi Charlene,  Is there a way to print out the text of the communications on laser experience.

         

        Thanks, George

      • #18423
         Charlene Marshall 
        Keymaster

        Hi George ( @georgeconnell )

        Great question – let me ask our tech team and get back to you! I’m not sure, but maybe there is a way to transfer all the information onto a word document easily enough, as opposed to trying to print it via these threads which might become difficult to read on a print out. Let me ask and see what I can find out for you 🙂

        Charlene.

  • #18379
     Lorraine 
    Participant

    @let666:

    I realize I am late in replying to your 3/14 post, when you wrote …”and in the 2014 Egyptian study they went from 30 meters to 93 meters. This laser acupuncture with low level laser. With such impressive results I am wondering if the laser acupuncture method may be more effective than what we are doing now. Doing both would be too time consuming and costly. Please let me know what you think about this as I imagine when you started your own laser therapy 4 yrs ago you probably did not know about these laser acupuncture studies.”

    I just started my treatments two-weeks ago, and noticed the following on my chiropractors website:  “The treatment method is referred to by several names such as Laser Acupuncture, Low-Level Laser Therapy, Soft Laser, Low Power Laser Therapy, and Bio-stimulation.” Perhaps this was already mentioned in this thread, but in case it wasn’t I thought I should share this.

    Also, I was wondering if anyone knows what medication the Egyptian study participants were taking?

    Thank you,

    Lorraine

  • #18386
     john styles 
    Participant

    The Egyptian study was for a short duration,most patients  only 2 weeks but what was impressive was that everyone improved.  Dr Andy Hall has been using the laser on himself for 4 1/2 years and a few people have been using it for several years and now a lot of us are doing laser. I for one think there is good results with the laser. No decline is the result we are all hoping for and that takes time to confirm.  Which is better the acupuncture points or over the lungs? That is a good question. Now I have had a PFT after starting laser and had improvement on all FEV after 2 years of decline and have seen some improved energy and saturation so I am staying with Andy protocol but I wonder sometimes about doing the acupuncture points with the laser.

  • #18387
     Lorraine 
    Participant

    Thank you John! After learning about k-laser therapy from you and others on the PF forum, I started treatment on April 3rd and have had 6 treatments thus far.

    Also, I have reached out to Dr. Hall, many times and as you know he is very kind and generous with his time!!! THANK YOU DR. HALL.

    I expect my next PFT to occur on May 10th and another CT scan soon after and will post an update. And because of you, Dr. Hall and others, I too am dedicated to ongoing treatment.

    Ok, given that Laser Acupuncture and LLLT is one in the same …. I have another question, aren’t the lung acupuncture points being treated simultaneously?

  • #18388
     Steve Dragoo 
    Participant

    @caneelbay1

    Hey John,

    I have not read that whole study so thanks for the summary.  when I first started doing laser research because of y0u I found a German doctor that had the color spectrum laser and used all colors individually on patients hooked to what would be like an IV attachment to the vein. So he used the different colors as they supposedly help different functions of the body.

    The doctor I use for laser treatments does not have manual settings so we had to modify what Andy uses. My doc’s laser modulates, uses 12 watts, and a little over 11,000 joules which Andy thinks is fine, I do too. So we do about 7.5 minutes on each side. I know the following is subjective but today unloading groceries I made two quick trips carrying all bags and 7 gallons of water. Just a few weeks ago I had to stop after each load and rest again before unpacking them.  The doctor took back my portable O2 bottles after a 6-minute walk test a couple of months ago.

    Serrapeptase, B vitamin complex, and definitely K-laser are responsible – especially laser. Doing a 3rd CT scan next week and looking forward to hearing the results since I leave for the Philippines next month and have not found a laser over there yet.

    Stay well… Steve

    • #18390
       Peter Goodwin 
      Participant

      Hi Steve

      Good to hear the Laser is working well for you.

      Dr Halls protocol on his website suggests 10 watts,  5400 joules per dose, 5 minutes front and 5 minutes back.

      You mention your Doc’s Laser uses 12 watts and a little over 11000 joules –  and you are treated 7 1/2 minutes back and 7 1/2 front. Does that mean you are receiving a total dose of 11,000 joules?

      Thanks. Peter.

    • #18399
       leontis teryazos 
      Participant

      Hi Steve,

      By 7 1/2 min each side do you mean font and back or left and right lung area.

  • #18391
     Steve Dragoo 
    Participant

    @petergoodwin

    Hi Peter – yes a total of 11000 but another difference is the modulation it has too. – Steve

    • #18393
       Peter Goodwin 
      Participant

      Hi Steve

      Thanks. I always understood the number of joules administered represented  the ‘dose per session’. So at 11,000 that’s twice what I receive as recommended by Dr Halls protocol. Wish I understood a little more. I have another session tomorrow so I’ll ask my chiropractor.

    • #18396
       A. Houghton 
      Participant

      Hi Peter ( @petergoodwin)  I am a new member and this is officially my first post.  It’s the first time I’ve heard about laser treatment to improve one’s quality of life with IPF; however reading through the posts, I still don’t know who or where to go to possibly connect with a health practitioner in order to learn more about the treatment.

       

      Can you help me?

      • #18419
         Charlene Marshall 
        Keymaster

        Hello there,

        Welcome to the PF forums – we’re glad you’re here 🙂
        This is a very popular topic, and one that is discussed a lot on this platform. I am sure many members here would be happy to help you obtain some information about laser therapy, here are a few folks you can likely reach out to for more information: @steve-dragoo, @let666, @caneelbay1 and @drandyhall. I am also happy to help you as much as I can, although I haven’t yet embarked on my own laser therapy journey yet. Feel free to reach out to anyone regarding your questions.

        Warm regards,
        Charlene.

      • #18422
         Steve Dragoo 
        Participant

        @ahoughton

        Howdy,

        Dr, Hall has a protocol typically used for the specific class 4 K-laser and he can help you find local help if there is some available in your area. I started the laser treatment about two months ago and have been experiencing more energy and endurance but I also do several things in a daily regimen and try to hit the gym 3X weekly.

        Success – Steve

      • #18428
         Peter Goodwin 
        Participant

        Hi A Houghton (What’s the A stand for?)

        Hope I can help.

        Where abouts are you located?

         

        Peter

      • #18426
         Andrew Hall DC 
        Participant

        Hi,

        I would be happy to help you find a laser therapy provider near you.  Unfortunately, right now the site that I go to find providers is down.  Just provide your town and zip code.  To get on the fast track as far as learning about laser therapy, go to my website and click on IPF and you will see an article on therapeutic lasers and how it all works.

        Go to:  summit-chiropractic.com

        I will be back in touch tomorrow afternoon.

        Blessings,

        Dr Andy Hall

    • #18414
       Steve Dragoo 
      Participant

      Hi Leontis – yes front and back. The doctor is on continuous movement on each side and I can hear when the laser shifts to a different modulation. Best – Steve

      • #18432
         A. Houghton 
        Participant

        Hi Peter, so grateful for your help.  The “A” stands for my husband, Arthur.  I am Catherine, his wife and caretaker….and research detective.  I will sign off my posts/inquiries as Catherine.

        We live in New Hampshire.

        Catherine

      • #18466
         Peter Goodwin 
        Participant

        Hi Catherine

        First of all you’ll need a chiropractor who uses a Laser. Go to:

        https://www.k-laser.com/medical-professionals/find-a-provider

        Enter your town and it will show providers near you on the map. Scroll down the page and it will also give you a list.

        Unfortunately most Laser providers won’t know about Laser for Pulmonary Fibrosis so you’ll have to point them to Dr Hall’s website. It’s all explained on  http://summit-chiropractic.com/ipf/

        Dr Hall is very helpful and and if necessary will help you find a provider and guide them through the process as he has suggested in his post above.

        Good luck with the Laser therapy, I know Dr Hall  will help find a suitable provider nearby and guide you through the process.

        Peter

         

  • #18392
     john styles 
    Participant

    Hi Lorraine, for the time the chiropractor spends over the lungs with the laser it should be no extra charge to do a little time over the acupuncture area. After reading your post I sent my chiropractor a e-mail with the Egyptian study attached because it shows the acupuncture sites for the lungs and asked if he could do  a little time over the acupuncture sites.  I was doing laser 5 minutes at 9 watts over each lung for 20 minutes but now I am doing 3 minutes over each lung at 9 watts so I should be able to add the acupuncture sites at no charge.  I was amazed to see improvement on my PFT because the previous PFT was done November around the 3 and I started laser Jan 17 and had the follow up PFT done around March 3 with the same tech who did my PFT tests last year. With steady decline on my PFT tests  I would have been happy with a small decline but to see improvement is amazing.  I also have a weird result, I walk daily, prior to laser last year I was doing a mile and using portable oxygen and had lost my increased saturation’s while walking outside, the saturation’s actually increase while walking outside. About two weeks after starting laser these increased saturation’s came back and I was walking  a 1 1/2 miles. Then about week 6 after starting laser  I lost the increased saturation’s while walking outside, I returned to where I was last year needing portable oxygen to walk. These increased saturation’s returned about 4 days ago.  No idea why. When I get up I walk 40 minutes inside and saturation’s drop to 88 from 91 or 92.  Later in the day when I do a mile walk they start at 91 or 92 then go up to 97, 96 and as low as 90.  No idea whats going on but I will take every improvement I can and I hope they stay this time.  Special thanks to Charlene that lets us post our results.

     

    • #18394
       Steve Dragoo 
      Participant

      Hi Peter – It can be confusing. The 11000 is total for the session and Andy recommended it and I think modulation may affect that but don’t know.  The protocol is not an exact science as I see it.  Best – Steve

    • #18397
       Lorraine 
      Participant

      Hi John:

      Thank you for your reply and insight about your experiences and adjustments to your ongoing treatment.

      Also, I appreciated you telling me that you sent your chiropractor an e-mail with the Egyptian study attached because it shows the acupuncture sites for the lungs and asked if he could do a little time over the acupuncture sites.  I will do the same! And yes, any improvement is great news, and I hope it continues and remains steady. And I hoping for the same!

      And yes, special thanks to Charlene for letting us post on this topic and for preserving the history of LT Part I & II. I think I have read this trilogy several times, since it is so important.

       

      • #18420
         Charlene Marshall 
        Keymaster

        Happy to have done so Lorraine! I continue to watch the Laser Therapy III topic thread too and once/if it becomes too large for people to follow I’ll “close” this one down and start a new one. I think since so many people are interested in laser therapy, it is important to ensure the information doesn’t get lost and is accessible to all. I keep a close eye on this topic, and so glad to see everyone responding to one another in such a kind and helpful manner. This forum really is filled with such wonderful members! Take good care 🙂
        Charlene.

    • #18398
       leontis teryazos 
      Participant

      Hi John ( @caneelbay1 )

      Do you have a document you can post or email to me that shows acupuncture sites for lungs. I definitely would like to show this ASAP to the chiropracter doing the laser treatments.

    • #18479
       A. Houghton 
      Participant

      I just saw this, Peter.  Thank you so much for the information.  You are very kind.

       

      Catherine

      • #18481
         Andrew Hall DC 
        Participant

        Hello Catherine, ( @ahoughton )

        Were you able to get the information you needed?  If not, provide me your city and zip code and I will help you find a laser therapy provider near you for your husband.

        Dr Andy Hall

  • #18427
     David Swain 
    Participant

    Hi everyone. Thanks to everyone who has contributed, especially Dr Hall. I’ve been following the discussion and have now had 7 k laser treatments. I’ll post the results after 10 treatments. Meanwhile, can someone please post a link to the Egyptian Study as I would like to read it. I’m wondering whether to include the acupuncture points in my treatment schedule. It would also be interesting to hear @drandyhall view on this. Thanks in anticipation.

     

  • #18434
     john styles 
    Participant

    @davidaswain , the Egyptian laser study is in google. google ” low level laser therapy in chronic obstructive lung disease”  it should come up. The research was done for a short period but done on about 200 patients, all had improvement.

    • #18437
       leontis teryazos 
      Participant

      Hi John  ( @caneelbay1 ),

      Do you have a document you can email to me as an attachment that shows acupuncture sites for lungs. I definitely would like to show this ASAP to the chiropracter doing the laser treatments. My email is [email protected] and would much appreciate getting this from you.

  • #18439
     Kiran 
    Participant

    Hello

    Just wondering if there is anyone on here suffering from IPF, on laser therapy.

    Thank you.

     

    • #18448
       Charlene Marshall 
      Keymaster

      Hi @kiran,

      Yes, most of the people contributing to this topic thread have IPF and are actively being treated with laser therapy. Take a thorough read through everyone’s comments on how it seems to be helpful to them, and hopefully it gives you more information to make a good decision about whether or not you want to pursue it. Totally an individualistic choice 🙂

      Feel free to be in touch if you have any other questions. Please note: this platform is NOT endorsing laser therapy as an effective treatment for IPF. We’re just trying to provide an unbiased spot for folks to talk freely about it and whether or not it is helping them. BioNews does not endorse laser therapy, but happy to hear people talk about it freely on this site.

      Take care,
      Charlene.

  • #18440
     David Swain 
    Participant

    Thanks John. The only study I can find is for 30 participants with COPD (not IPF) and uses 5-30W lasers. So, not only is this a different disease, but the treatment is completely different to the class IV 10watt laser treatment being discussed in this column. Maybe I haven’t found the Study you refer to which you said included 200 participants. Anyway, thanks for your help, but I wonder if those Egyptian studies are relevant to us, who suffer from IPF.

  • #18441
     john styles 
    Participant

    Hi David, the Egyptian laser study starts out with aprox 30 people with copd, then further into the study they used the laser on 90 children with asthma and the study mentions Mohamed and others  who used on on 31 people with different diseases including interstitial lung disease which is a form of IPF.  I do not think  the Egyptian study is good for much more then it is amazing that everyone improved,  they only did the study for 10 days and a lower level laser.  As for me I think the main person is Dr Hall who has used the class 4 laser for 4 1/2 years and before I started using the laser Dr Hall  had several people using the laser. I do not think we should expect much more then no more progression of the disease, at least that is what I am hoping for.  I have personally seen how this disease sneaks up on myself as it progresses robbing me of simple functions.  My next PFT is in October and I am hoping for stable results as was my last PFT in March. I sent the Egyptian study to my chiropractor who e mailed back and said he could hit some acupuncture points. I guess no guarantee on what will be the outcome. Here is hoping.

  • #18429
     Lorraine 
    Participant
  • #18430
     Lorraine 
    Participant

    @davidaswain ,

     

    This is better … (scroll down to # 4 and click to view lung points)

    http://www.ejbronchology.eg.net/article.asp?issn=1687-8426;year=2018;volume=12;issue=3;spage=317;epage=322;aulast=Sayed

     

  • #18469
     john styles 
    Participant

    I just got back from a laser treatment, my chiropractor did about 30 seconds over the acupuncture points after the laser treatment, he had to turn down the laser to 1 watt due to it is a class 4 laser.  Have to wait and see if there is more improvement.  Thanks Lorraine

    • #18562
       Lorraine 
      Participant

      Hi John @caneelbay1

      After my laser treatment this morning, my chiropractor assistant — went over the acupuncture points, front and back. Going forward this will be part of my regular treatment. Also, she had printed out the lung acupuncture images, 4 a-c, from the study.

      Wishing you the best.

      Please keep in touch,

      Lorraine

      • This reply was modified 1 week, 1 day ago by  Lorraine.
  • #18475
     Lorraine 
    Participant

    Glad to hear John and I hope you see more improvement! I will talk to my chiropractor about this on Wednesday. Best wishes, Lorraine

  • #18485
     Kiran 
    Participant

    Hi Charlene

    Thank you for your response.

    I have been following this thread for a while. Trying to gather information for brother in UK.

    I am also hoping he considers Laser therapy.

    Thank you

     

    • #18500
       Charlene Marshall 
      Keymaster

      Hi Kiran,

      That is great, I’m really glad to hear that the site has been helpful and informative for you. Feel free to reach out for more information at any time, folks are wonderful on the forum and always willing to help.

      Regards,
      Charlene.

  • #18480
     Michael Lamkin 
    Participant
    • #18494
       Charlene Marshall 
      Keymaster

      Thank you for sharing this @michael-lamkin! I know others will appreciate having the link so readily available, so thank you for the time you took in sharing that with all of us.
      Warm regards,
      Charlene.

  • #18488
     David Swain 
    Participant

    Hi Loraine. Thanks for posting the links for the Egyptian Study. I am now reading the 3rd one worked well. For the information of others, this is the link for the Egyptian Study, showing the lung acupressure points.

    http://www.ejbronchology.eg.net/article.asp?issn=1687-8426;year=2018;volume=12;issue=3;spage=317;epage=322;aulast=Sayed

    • #18617
       Lorraine 
      Participant

      Hi David and Steve:

      I just started taking Methyl Protect, 2 tablets with breakfast, 2 at dinner.

      Also, my naturopathic cardiologist is also treating me and others for PF and wants me to go for IV Nutrient Therapy. I will TelMed with him next week to find out if he found a functional doctor nearby that takes insurance. I will also find out the contents of the cocktail. Number of treatments etc.

      Have either of you tried IV Nutrient Therapy? Any thoughts?

      Thank you,

      Lorraine

       

       

  • #18601
     Kiran 
    Participant

    Hi

    Is there any one in uk, who has had Laser Therapy for IPF?

    Thank you

    Kiran

     

     

    • #18604
       Peter Goodwin 
      Participant

      Hi Kiran I’m in Sheffield and use an osteopath with a K laser. I’m lucky, the nearest then is 40 miles away either in Nottingham or the North West. If you google K Laser providers UK it will show a map where they all are.

      My 02 sats are up a couple %, my fatigue has lifted and my walking has just started becoming a tad easier. The real aim of course is to slow or stop progression, anything else is a bonus. I’ve had 2o sessions at £40 a time, I think chiropractors are a little cheaper.

      Peter

    • #18619
       Steve Dragoo 
      Participant

      @lorraine

      Hi Lorraine – I have not heard of those meds. Are they in any way related to WEI Institute? When I see a concoction of ingredients, I do what I can to research them to try and ensure they are all useful. Certainly interested in what you discover.  Please let us know.  –  Steve

      • #18620
         Lorraine 
        Participant

        Hi Steve:

        You can get Methyl Protect tablets from Amazon. I did not hear about them from the WEI Institute, I heard about them from my naturopatic physician. Methyl Protect contains: Folate, Thiamine (Vitamin B1), Riboflavin (Vitamin B2),Niacin, Vitamin B6, Vitamin B12 (Methylcobalamin), Biotin, Pantothenic Acid, Choline Bitartrate.

        Methyl Protect supports:

        ~Cardiovascular and Neurological Health

        ~the Maintenance of Healthy Homocysteine Levels Already Within Normal Range

        ~Healthy Methylation of Estrogen, Dopamine, Epinephrine, Heavy Metals, and Environmental Toxins*

        My Homocysteine Levels are at 15, my naturopatic cardiologist told me to take Methyl Protect to reduce my levels to 7. He says Homocysteine is a real indicator of a heart attack. Also, it would be helpful to PF.

        And yes, I will let you know what I learn about the IV Nutrient Therapy and if I proceed with treatment, I will let you know what cocktail they give me.

        Best wishes,

        Lorraine

      • #18621
         Lorraine 
        Participant

        Hi Steve: I cut and paste the following for better accuracy.

        “Methyl Protect is a comprehensive formula designed to support optimal methylation and help maintain healthy homocysteine levels already within normal range. It features five key nutrients that are involved in homocysteine metabolism: folate as calcium folinate and Quatrefolic† for increased bioactivity; trimethylglycine; and vitamins B12, B6, and B2. These five nutrients, provided in activated forms, support enhanced methylation and overall cardiovascular health.”

      • #18647
         A. Houghton 
        Participant

        Hi Steve ( @steve-dragoo ) ..In my travels, I bookmarked and quickly glanced at the WEI Institute website.

        Can you or anyone else shed some light on their protocol?

        Thanks,

        Catherine

  • #18602
     David Swain 
    Participant

    Hi Kiran. I live in Exeter and have started laser with Dr Julien Barker, South Street Chiropractors, South Molton, Devon.

    I’ve had 8 treatments so far.

    • #18622
       Steve Dragoo 
      Participant

      @lorraine

      Hi – B complex is very good, it alone has added endurance to my day. When I do blood work that is one thing I have not seen on the tests but there are so many initials and acronyms I’m not sure what to look for on previous results. But I don’t eat much meat anyway.

      Thanks for your info. I think almost all of us probably have heavy metals floating around.

      Stay well,

      Steve

  • #18603
     Kiran 
    Participant

    Hi David

    Thank you for your response. Would you by happy to give me an insight to some questions I have please?

    I gather from your posts your Pulmonologist is ok for you to have laser treatment. Just wondered – Are you on one of two recommended treatment? Have you noticed any benefit from laser? – ( Sorry I am aware you will post after having 10 sessions -just  yes or no will do.)

    Are you benefiting from taking Serrapeptase?

    I really want my brother to consider laser therapy.

    Thank you

    Kiran

  • #18609
     David Swain 
    Participant

    Hi Kiran. I forgot to say that I’ve taken Serrapeptase for 15+ years to help with angina. I no longer suffer from angina and taking the serrapeptase may have slowed the progression of IPF, which due to a persistent cough, I suspect I’ve had for a long time, before it was diagnosed in March 2018. As I said before my cough has now reduced due to the Laser therapy. David

  • #18611
     Steve Dragoo 
    Participant

    @davidaswain

    Hi David,

    How much serrapeptase are you taking daily?  I started about 4 months ago and noticed fast results.  Regards your angina, serrapeptase is a good blood cleaner but I would also suggest looking at nattokinase for angina. I do take both and the natto reduced my heart rate in just a few days.  Adding the natto to the serra, a good B vitamin complex, and K-laser I almost feel 60 again…  Steve

    • This reply was modified 6 days, 7 hours ago by  Steve Dragoo.
  • #18615
     David Swain 
    Participant

    Hi Steve, @steve-dragoo.

    It’s good to hear from you again. I’m trying to take 360SU of serrapeptase per day, but this is difficult to remember to take it between meals. So, I guess I mostly take 240. I omitted to say that I’ve been taking Nattokinase as long as the Serra, as this was the combination, which I believe cured my angina. My heart rate is very low, usually 50 to 60, but somtimes dropping to 46. May I ask why you take the B complex?

    I try and walk 10,000 steps/ 4 miles a day and/or go to the gym. However this is proving difficult at present, due to the time needed to travel for my laser.

    Until recently I’ve had lots of energy and endurance, but this isn’t so good now. I particularly struggle when walking uphill, though many of my friends would not notice it, as I’ve always been faster than them. My O2 after walking 500 steps uphill can go as low as 75. I hope it will improve with the laser, though this hasn’t happened yet. David

  • #18616
     Steve Dragoo 
    Participant

    @davidaswain

    Hi David,

    I know we had a brief conversation a while ago so was wanting the dose so others can see.  I assume you mean 320000SU? Now I take 400000 SU daily in 2 separate doses and make sure I remember as it is more important than food.  Natto certainly helps the heart rate slow down quickly, some are concerned about bleeding but I have had several scratches and minor cuts with no problem stopping.

    As we age B12 is harder to uptake and the B complex I take covers the spectrum including niacin.  B complex has definitely improved my endurance and so does working out at the gym.  It’s a struggle for me too but important. I am diabetic and overweight so those both affect my blood sugar.

    I am not sure the laser will improve O2 however I usually see a couple of points higher O2 for a day or so after the laser.  As more a precaution the doctor put me on a CPAP with 2.5L of O2 at night and that may have a benefit for a few hours after I rise but so does the lemon/lime first thing.

    So altogether B, D 3 and K2m7, astragalus, serra, natto, Omega 3, niacin, metformin, water, diet, hot lemon/lime juice (w water and a little real honey), exercise, and laser for lungs liver and kidneys. – Not in that order… – Steve

    • #18624
       leontis teryazos 
      Participant

      Hi Steve,

      I am wondering about Natto being able to help the heart rate slow. I have looked up Natto and no article says it does this. It can lower blood pressure but this is not the same thing as lowering heart rate.

  • #18625
     Steve Dragoo 
    Participant

    @let666

    Hi – Because nattokinase is anti-inflammatory and a bit of a blood thinner/cleanser (much safer than aspirin) it can lower heart rate.   It certainly has lowered mine. There are times when it can jump up like yesterday at the gym on the treadmill (very slow but incline) and after several other exercises first, it was 135 briefly.

    Other meds may increase heart rate which I cannot speak to and many with IPF also acquire pulmonary hypertension and that too will increase heart rate.  I have PH but my resting heart rate is low 60’s high 50’s and I am 70 and overweight and diabetic. Before natto, I would rarely see HR in the high 60’s it was mostly in the 70’s and low 80’s. I do take other supplements/vitamins and who know if natto is synergistic with one or more of them. Hope that helps you… – Steve

    • #18626
       Steve Dragoo 
      Participant

      @let666

      I want to add I doubt it is synergistic as I take it separately by itself once per day and not a huge dose since it was new to me a few months ago. – Steve

  • #18627
     leontis teryazos 
    Participant

    Steve,

    Can you please let me know how much natto you are taking.

    That is great that your HR rate is so low.

  • #18628
     leontis teryazos 
    Participant

    Steve,

    What do you think of this combination product.

    Dose is 1 pill daily Solaray, Nattokinase Serrapeptase, 30 Vegetarian Capsules
    1 Vegetarian Capsule, Amount Per Serving % Daily Value Nattokinase (Soy Bean Fibrinase) (Supplying 3000 FU [Fibrinolytic Units])150 mg*Serrapeptase (Supplying 60,000 Units [2000 U/mg])30 mg**Daily Value not established.

     

     

    • This reply was modified 5 days, 3 hours ago by  Charlene Marshall. Reason: formatting
  • #18629
     Steve Dragoo 
    Participant

    @let666

    Hi – Sorry I cannot read your last post.  I know these forums don’t do well with cut and paste many times.

    I am taking 2000 FU (200 mg) daily of natto and 205000 SU of serra 2X daily.  I take them separate from each other and definitely separate from food or any other medication especially for several hours and slowly built up to the serra dose.  I have no plans to increase the natto for now as it is working well.  So HR and BP are both very good. I buy Doctor’s Best on Amazon and may switch – even though I have used Doctor’s Best products for decades.

    So I just want to be clear that I take several supplements and do class 4 laser.  The laser improves my O2 readings for about 2 days or so and maybe it helps HR slightly too. However, each supplement/treatment added was added separately for a few weeks before doing anything else. This gives me a comfortable opinion of what helps and how. – Steve

    • #18635
       Charlene Marshall 
      Keymaster

      Hi @steve-dragoo,

      Happy long weekend!
      I tried to edit @let666 (Leonits’) post as best I could by eliminating the spam/coding, not sure if it reveals the formula a bit better? Hope so, I wasn’t quite sure where to edit…

      Charlene.

  • #18630
     leontis teryazos 
    Participant

    I whas wondering what you thought of the Solaray combination product of Natto 300 FU, 150 mg and Serra 2000 u/mg, 30 mg. This is taken once daily. Taking as combo seems like a good idea.

    • #18645
       Steve Dragoo 
      Participant

      @charlene-marshall

      Hi Charlene – thanks Lorainne reposted and we worked it through.

      Looking forward to Monday at the gym and laser. Rented furniture storage space and secured moving help. Laptop windows 10 crashed last Sunday but Dell did something different to windows 10 and it is running better. Had Carbonite clean out all old files and easily got back up and running because I backed up all data on an external hard drive.

      So how you doin? Did you get caught up on all the responses you needed to do on PF News?

      Now only 1,000,001 things left to do…

      Happy weekend – Steve

      • #18656
         Charlene Marshall 
        Keymaster

         

         

        @steve-dragoo,

         

        Hello my friend!

        Glad the responds went through once I release them from the ‘moderation required’ status. We’ve created a “whitelist” on the back-end of the forums, and every time I notice people’s comments being held for moderation, I add their user ID to the whitelist which then usually allows all their posts to go through. There may be an easier way of doing this, but for now it seems to be working. It’s a work in progress! 🙂

        Glad you’re getting things organized for the move, kudos to you! Will you store your furniture and things until you return to the US? Do you plan on returning? You may have explained this to me already and I’ve forgotten, sorry if you have.

        Ah bummer, that sucks about the laptop crash but really smart to back up all your data on an external hard drive. I should do this actually as I have one, but have never opened the external hard drive. Glad the clean out got everything back up and running easily.

        I am doing well, still recovering from my trip last weekend though – I can’t believe how much it took out of me! It was all worth it, but I’d left so much house tidying, errands etc until this weekend so I am slowly getting caught up which feels nice. I am almost through email notifications – about 15 more to go! I hope to have that done this morning, and just poured a nice coffee to work through the rest. Thanks for asking and I hope you’re also doing well 🙂

        Talk to you soon,
        Charlene.

  • #18631
     Steve Dragoo 
    Participant

    @let666

    Because they act differently but both go for dead protein, I take serra and natto about an hour to two hours apart.  When I started serra several months ago that dose was 120000 su daily, now 410000 su daily so I don’t know if that lower dose of serra will help.  Most I have seen take a minimum of 80000su daily. I am willing to take more because of IPF and have seen some info that says it is very safe up to and even higher than 1,000,000 su daily. I’m about halfway there.

    • #18666
       Steve Dragoo 
      Participant

      @charlene-marshall

      Hi Charlene – I knew you were/are busy so I tried not to bug you. Yes to storage and I can’t say when or if I/we will return to the USA but we want to but a lot of that depends on how it goes flying over there without O2.

      They improved windows 10 this I can tell because so far no warning, no update issues, no reboot automatically. So I made a note on the calendar to remind me weekly Sunday evening to back up the hard drive but Carbonite will also go smoother as now they only have this set of data.  The external hard drive is a lot faster to restore but I would lose a week’s worth of data at the most that’s where carbonite comes in handy.

      Lately, I am noticing a little more irritation when things don’t go smoothly and I shouldn’t because hardly anything has ever gone smoothly in my life – one big exception is every time I have flown halfway around the world it has been flawless – that’s amazing…

      Continued wellness,

      Steve

       

      • #18685
         Charlene Marshall 
        Keymaster

        Hi Steve,

        Nice to hear from you — it’s never a matter of you bugging me! I just may take longer to reply, that  is all 😉

        Makes sense re: waiting to see how the flight goes without 02 before deciding whether or not to come back to the US. Will your wife come with you if that is the case?

        Interesting you should say that about the irritation, I find I am a lot more irritable and impatient at times as well and usually it is over something small. I need to work on this, sorry to hear you’re starting to experience it too. Hopefully the flight goes as equally flawless this time around. Will be thinking of you!

        Charlene.

  • #18632
     leontis teryazos 
    Participant

    Your original thought was to start taking things one at a time to see how you react to each one and that makes sense so will follow that plan. You take the Natto to reduce HR but cannot remember what you take Serra for. Can you please remind me so can decide which one to start first.

    • #18690
       Steve Dragoo 
      Participant

      @charlene-marshall

      Hi There,

      Yes, she will return as I am staying there at least until our papers are finished.  The irritability is unusual for me. Yes, I am impatient but it didn’t use to morph into irritation.

      Because of Visa rules over there, she and I will travel to Kuala Lumpur for 5 days and visit all we can, after I have adjusted over there about 3 weeks or so. Going to visit Petronas Towers, small boat night ride into firefly heaven, a nightly symphony in the main park, mall visit, day city tour, local cuisine, and many others to decide about like Batu Budda Caves, Malacca Palace, Menar Towers and much more. When we return to the Philippines I get a special stamp on my passport that allows me to stay in the Philippines 1 year with no fees or strings attached.

      Counting the days…

      Steve

      • #18693
         Charlene Marshall 
        Keymaster

        Hi Steve,

        Oh that sounds lovely, I am so glad you’ll be back with your wife soon! Enjoy all of your travels together, I’m going to have to look some of those places up so I can visualize where you’ll be. I can only imagine that you’re counting down the days, how many left? 🙂

        Take care,
        Charlene.

  • #18633
     Steve Dragoo 
    Participant

    @let666

    I know why I take the serra.  It has a good success record of reducing scar tissue (not proven for the lungs, however) but I started it to reduce lung mucus and it has worked overwhelmingly satisfactorily. It is, therefore, a blood cleaner to a certain extent too as it eats dead protein.

    • #18648
       leontis teryazos 
      Participant

      Steve

      I was about to order the Natto until came across an online article called Nattokinase Scam by Curereality. They warn about serious dangers so wondering what you think. Not sure if Currreality is a site with good reputation.

    • #18698
       Steve Dragoo 
      Participant

      @charlene-marshall

      I arrive in the Philippines 1 month from today.  ALso, they had a 6.1 earthquake not far from Manila yesterday.

      Steve

      • #18703
         Charlene Marshall 
        Keymaster

        Woah Steve, is everyone okay? I didn’t hear about that but sure hope everyone survived an earthquake of that magnitude! I bet you are counting down the days until you arrive, 1 month will hopefully go quickly 🙂
        Charlene.

  • #18606
     David Swain 
    Participant

    Hi Kiran ( @kiran ) ,  Of course I don’t mind you asking. I’m happy to help in any way possible. My pulmonologist seems happy with any alternative therapies. His attitude is that if it’s helpful then go for it.

    At present I am not on either OLEF or Esbriet. My laser therapy is on the schedule which K laser sent to my chiropractor. I’m paying £25 per treatment by booing a number of treatments in advance. Normal rate is £28, which is very reasonable. The protocol is very similar to Dr Andy Hall’s protocol. I haven’t tried the laser Accupuncture yet.

    The only noticeable change after 8 laser is less coughing. I’m not too sure about O2 levels yet, but it’s early days, so I will press on with the laser.

    Hope this helps – David

    • #18649
       Steve Dragoo 
      Participant

      @let666

      I cannot attest to individual products sellers and looked for natto without K2 and all soy is gone but is still listed as an ingredient.  I use a low dose as mentioned and what I did was search on Amazon reading the reviews and questions, watched some videos, used WebMD and a couple of other doctor sites before I bought any.

      Hope that helps you – Steve

      • #18650
         leontis teryazos 
        Participant

        Steve,

        If you Google Nattokinase Scam by Curereality and see all the responses and exchanges at end of article think there is a lot of interesting things there. The people responding who used Natto have positive things to say.

    • #18707
       Steve Dragoo 
      Participant

      @charlene-marshall,

      A store collapsed and there is a video of a large amount of penthouse swimming pool water splashing over the side of a high rise cascading to the ground.  Another showed a tower crane swaying at least 5 feet.  Many missing and plenty are dead.

      3 boxes I shipped arrived just fine..

      Steve

      • #18710
         Charlene Marshall 
        Keymaster

        Oh my gosh, that is awful! I am going to look up that news now, how terrible for the people living there who are affected. Will sure be sending prayers their way, very sad.

  • #18623
     David Swain 
    Participant

    @steve-dragoo, @lorraine

    Hi Steve and Lorraine,

    Thanks for your helpful posts. Yes, I meant to say that I am on 320,000SU serrapeptase. I have never found any problems with Nattokinase and bleeding. I’ll check out the B complex and Methyl Protect although my homosistein and heart are both normal.

    The one think I may not have mentioned before that has really helped my energy levels is a therapy recomended by a health guru called “mitochondrial Rescue.” She suggested this after a heart rate variability test. This fest measures how the body uses energy. The supplements I’m taking are essentially Carnesine and CQ10. After starting them I found an instant improvement and no longer wanted to rest after lunch. There’s quite a lot of research about mitochondria and IPF. I’m including a link to my gurus web site and a more general research paper.

    https://www.mitochondrialrescue.com/

    https://www.jci.org/articles/view/87440

     

  • #18644
     Steve Dragoo 
    Participant

    @davidaswain

    Hi David,

    Yes there is a lot about mitro and ATP. Autophagy is another way for the body to repair and cleanse itself.  Been taking Q10 with ubiquinol a long time. Haven’t tried carnosine but heard about it. If you look at Dr. Ford brewer he has a lot to say what you mentioned.  Dr Axe  (google him) has a short article on autophagy and how to do it. Thanks for the links.  I’ll look.

  • #18669
     David Swain 
    Participant

    @let666, @steve-dragoo

    Hi Leontis and Steve. I’ve been following your discussions on Natto and thought I would let you know that I’ve taken 1600fu per day for many years, with no ill effects. This, in combination with Serrapeptase has “”cured” my angina. BP and heart rate are both low.

    Steve. I wish you all the best as you travel to the Philippines. I’ve done long haul without O2 and was fine. Have you found anyone in the Philippines who can give you laser?

  • #18699
     Steve Dragoo 
    Participant

    @davidaswain,

    Hi David – thanks for sharing your insights.  Haven’t found a laser treatment in the Philippines but I have several people trying to figure it out. Not so worried about the long haul travel just the huge amount of things I need to take care of before I leave as I get tired far too easily anymore if it is hard work…  Thanks!  – Steve

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