Laser Therapy Part III

[terry-moriarty]

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

[Charlene Marshall]

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.

 

 

[steve-dragoo]

@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

[leontis-teryazos]

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<

[andrew-hall-dc]

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.

[leontis-teryazos]

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.

[betty-edwards]

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.

[andrew-hall-dc]

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.

[dianaj]

Hi Dr. Hall.

First off, thank you for working so hard to get your information our there, and for your efforts in starting a trial. Most doctors repeat what they’ve learned in med school and don’t dare think outside the box. In my opinion, that’s what separates a good doctor from a great one.

I came across this study https://www.fiziomedica.ro/Docum/Reduction-of-Post-Covid-Pulmonary-Fibrosis-and-Bronchiectasis-by-Physiotherapy-.pdf.
In addition to laser therapy, it includes three other modalities, one being exercise. The case study was of a 65 year old male with massive lung damage post COVID. The result was remission. No more scarring on his lungs. I am hoping this study is legitimate. They used an MLS multi-locked system, although it’s still a class 4 laser, could it be more powerful? They also did a total of 28 minutes, 14 each side. My question to you is, have you ever tried applying the laser for longer periods of time to see if you would get better results? This study was done for ten days in a row.

Thank you!

Diana Joren

[Charlene Marshall]

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

[peter-goodwin]

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.

[andrew-hall-dc]

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

[Charlene Marshall]

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.

[leontis-teryazos]

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.

[Charlene Marshall]

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.

[andrew-hall-dc]

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…….

[Charlene Marshall]

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.

[andrew-hall-dc]

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

[steve-dragoo]

@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

[Charlene Marshall]

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.

[steve-dragoo]

@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

[Charlene Marshall]

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

[leontis-teryazos]

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.

[Charlene Marshall]

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.

[Charlene Marshall]

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.

[andrew-hall-dc]

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.

[leontis-teryazos]

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.

[andrew-hall-dc]

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.

[leontis-teryazos]

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.

 

[steve-dragoo]

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

[leontis-teryazos]

Steve,

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

[terry-moriarty]

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.

[steve-dragoo]

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

[steve-dragoo]

@tmoriarty

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

[floyd-c-montgomery]

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?

[Charlene Marshall]

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.

[andrew-hall-dc]

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.

[peter-goodwin]

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.

[steve-dragoo]

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???

[dianaj]

with Serrapeptase, there is also a small chance of developing pneumonia.

[steve-dragoo]

@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.

[peter-goodwin]

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.

[steve-dragoo]

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.

[terry-moriarty]

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

[Charlene Marshall]

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.

[marshaharris]

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

 

[leontis-teryazos]

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.

 

[Charlene Marshall]

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

Charlene

[terry-moriarty]

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.

[Charlene Marshall]

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.

[terry-moriarty]

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.

[Charlene Marshall]

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.

[terry-moriarty]

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

[andrew-hall-dc]

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.

[terry-moriarty]

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.

[terry-moriarty]

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.

[Charlene Marshall]

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.

 

[terry-moriarty]

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?

[andrew-hall-dc]

Terry,

Please send me your email address.   [email protected]

[Charlene Marshall]

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.

[tom-dowell]

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

[Charlene Marshall]

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.

[michael-lamkin]

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.

[Charlene Marshall]

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.

[jack-blum]

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.

[terry-moriarty]

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.

[leontis-teryazos]

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.

[Charlene Marshall]

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.

[leontis-teryazos]

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.

[Charlene Marshall]

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 🙂

[john-marshall]

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

[terry-moriarty]

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.