[Andrew Hall DC]

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

Andy

 

[Andrew Hall DC]

Dear Charlene,

First of all, I think you are pretty hard on yourself……  I’ve never met someone SO dedicated and hard working. I honestly don’t know how you keep up with everything you have going on……  You are truly amazing!!!

I wish I could give you a good long hug!  There isn’t a single person that visits PF News that doesn’t just adore you including me!  You give EVERYTHING of yourself, and are encouraging to everyone on this site. You seem to have an uplifting response to everyone in every thread.  You are unbiased and open minded.  And you are appreciated more than you will ever know……

I know what it’s like to get overwhelmed.  With all the emails from PF patients and treating doctors, doing laser doctor searches, the phone calls, still running a practice and getting home late on work days, trying to keep up with the IPF study, doing research, the frustration of working with other doctors on laser protocol that don’t have the ‘urgency’ that I seem to have…….  There comes a point where I need to just back off.

The best stress relief for me is to take the dogs out for a hike.  I finally got to do that today when I got all caught up with everything.  (never really ever caught up) There was still some snow on the ground in our hiking area, but I got a good long hike in and it felt great!  I can’t wait to get my Harley out, it needs to warm up some more before that happens, but for me it’s good for my soul and clears my head.  A day fishing works too.  Can’t wait for Spring to really get here…. I’ve got lots of stress relievers.

Anyway, when you get feeling like you did Monday night, take a deep breath, and just know how much everyone loves you…….

Blessings,

Andy

[Andrew Hall DC]

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!

 

[Andrew Hall DC]

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…….

 

[Andrew Hall DC]

Terry,

Please send me your email address.   [email protected]

[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.

[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.

[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.

[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

[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…….

[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.

[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

[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.

[Andrew Hall DC]

Kristina,

We are THRILLED  for you!!!   Feels great to be going in the right direction doesn’t it!

Don’t worry about budhenry, he has issues, but it is too bad he basically ‘killed’ the Inspire site.  Very sad…

[Andrew Hall DC]

Hi Barry,

So glad to see you have gotten started.  It seems as though some patients see some results in as little as 2 or 3 treatments, others it takes much longer.  I think that chronicity has a lot to do with it.  There is a difference between ‘feeling improved’ and seeing objective changes as with monitoring your O2 levels.  I hear often that the patient feels more stamina, less coughing, and the like.  But often, like Jack Blum just posted, that he is measurably better on the treadmill while monitoring his O2 levels and pulse rate.

Know that laser therapy is cumulative, the more you do the better you do.  This is not only true of lung issues but for musculoskeletal issues as well.  And the same can be said for say a very chronic knee problem, it will take longer than a more acute type problem, and I believe from observation that more late stage lung disease will often take longer to notice subjective changes, though even late stage patients seem to have a least a little improvement with oxygenation fairly quickly.  So, I would monitor your O2 levels at rest and see what happens.

One of my big concerns is that even though we have heard from so many patients with results ranging from slight to dramatic, even with muculoskeletal conditions, we have seen so much success that success is just expected.  We still don’t understand why that is that a small minority of patients don’t respond.  Haven’t really seen it yet, but the same may be true for some lung patients, we now expect success but we just may have a failure pop up.  The problem with that of course is that these lung conditions are deadly, but you can still live with ‘tennis elbow’ or carpal tunnel syndrome.  I dread the time when someone really just doesn’t get better or arrest progression, and it could very well happen as with musculoskeletal conditions.

Andy

[Andrew Hall DC]

Hi Leontis,

I didn’t see in the study of only covering 30 meters before the 6 mwt.  I may have missed it somewhere.  I did see where there was no warm-up before the test.  Maybe we aren’t looking at the same Egyptian study.  The link I recently posted was for the study “Role of laser acupuncture in chronic respiratory diseases”.  Published in 2014.  The good thing with this study is that it wasn’t just for COPD in the other study that John referred us to, but for Asthma, COPD, bronchiectasis, and ILD (interstitial lung disease).  It had positive outcomes for all the patients in the study.

Yeah, seems funny that no one I know has started laser acupuncture for themselves after looking at the results of the study.  But it certainly would make sense to do so considering the outcomes.  I have always said that I don’t care what it is that you do, if it helps…. awesome!  I don’t care if it’s laser therapy, drug therapy, Chinese herbs, Serrapeptase, doesn’t matter.  We are dealing with deadly diseases and we will take whatever we can to get better or just maintain our health.  As far as the study that we are doing for laser for IPF/lung fibrosis, just like the patients on Ofev or Esbriet, laser acupuncture could be factored in as well.

So glad Betty is walking 100 meters more than she was after only 7 laser treatments.  Fantastic!

Andy

[Andrew Hall DC]

Yeah Steve,

We are soooooo close to being done.  Has taken quite a while, but it’s important that it be done right.  When we have a consensus of all 4 of us,  we will release the protocol, get the word out, etc.

Also, when the protocols are released, we discussed explaining the rationale for each frequency.  I think you will be impressed. It will also be a great thing for all the treating doctors to know exactly why these particular frequencies are being used and the importance of each one.

Andy

[Andrew Hall DC]

Hi again Charlene,

Yes, it’s amazing that patients and doctors alike are contacting me from everywhere.  All over Europe, the UK, Africa, S. America, Australia, Canada to name a few. I had another conversation this morning with a gentlman from the Netherlands, he/they are considering a traveling laser therapy provider for lung patients and has lots of questions regarding the ‘perfect laser and perfect dose’.  And like the Disney song, “it’s a small world after all”, no one is excluded from the study, there are no geographical boundaries.  These diseases affect people all over the globe.

I wanted to tell you about the meeting yesterday.  I drove the nearly 3 hours to Sacramento and met with Dr McGinnis and spent a good part of the day with him. It’s funny that many years ago I intoduced him to laser therapy.  He went on to become one of the top Class IV experts especially in regards to modulation/frequencies.  He has credentialled doctors all over the western US and Canada.  He is consulted by doctors the world over, and he ‘beta tests’ new lasers going on the market by K-laser, in fact had one at his office for a month. So cool to check it out.  Very awesome piece of equipment.  We had long discussions about the frequencies we need specifically for IPF/lung fibrosis.  Those frequencies have all gone into one of his lasers.  We are not done, as we need more specific frequencies for limiting fibroblast formation.  But frequencies for inflammation, alveolar healing, microcirculation, stabilization of cell membrane, oxygenation, lymphatic stimulation etc are already into the laser.  We are getting close, but not quite there yet. The other 2 top Class IV experts are not physically near by, and we do have some logistic issues. ,

Dr McGinnis  can relate to deadly diseases.  Several years ago he was diagnosed with throat cancer and has been looked in the eye by his oncologist and said that he may not survive.  However he is doing well though he speaks with an artificial voicebox installed in his throat. But he continues to work.  He is passionate about laser therapy and is a very compassionate doctor.  During our discussions he said “Andy, you do know that what we are doing today can very well prolong tens of thousands of lives later”.  I said, yeah, I agree….

Dr McGinnis used the updated but ‘not completed’ laser on me.  I have to say that for the first time after a laser treatment, my chest felt ‘light’ and I had no cough for a couple hours.  Now, could have been my imagination or wishful thinking, but I don’t think so. We are very close to having a final product, but we are just not there yet.  I for one can’t wait!

 

[Andrew Hall DC]

Hi Steve,

I had not given any thought to a group dedicated to doctors.  But sounds like an awesome idea.  I don’t have a ‘list of doctors’ but I do have lots of contacts of the doctors that have reached out to me. And there’s a bunch!  I would love some help getting this done.  I have to tell you though, that right now I seem to have a full plate.  Sometimes I don’t feel like I can keep up, I’m doing a juggling act but I don’t want to drop the ball…..

I’ll work on a list though……

Andy

[Andrew Hall DC]

Hi Charlene and everyone,

Yes, we need to document all the changes patients are experiencing with laser therapy.  This is why we are doing a study on laser for lung conditions.  But the only way it will really happen is if patients get involved with the study. Otherwise, all we really have is scattered comments of how it helped (or not).  So, we are enrolling patients in the study and will have ‘baselines’ measured on each patient, and keep track of the changes using laser therapy using subsequent PFT’s and CT scans.  It really is a huge undertaking, but I’m up for it.

We can’t wait 10-15 years for someone else like the NIH to do this.  At this time, they have no interest.  In the meantime thousands of patients are dying.  So, what’s in it for the patient to get involved?  Number one is that they may find like so many others including myself that laser therapy can be very beneficial for them.  They can also know that they will be helping other lung disease patients both present and future of an alternative treatment that may improve the quality of life and perhaps prolong the life of those patients.  I believe thats HUGE!  We are all stuck with these diseases whether we like it or not, and for the minimal amount of effort sending copies of the PFT and CT reports this can be a really big deal.  All the patients that get involved truly are pioneers, and eventually the little bit of effort by them could help alleviate tremendous suffering by lung patients.  Pesonally, I feel a moral responsibility to be involved with a study.

I wish the study was a full-blown Clinical Trial, but it’s not.  Those cost a huge amount of money, money that I don’t have.  This study is a ‘preliminary’ study to help convince the NIH or others to finally do a large, formal Clinical Trial depending on results.  But I realized a couple years ago, with all the reports of patients that improved with laser for their IPF/lung fibrosis that this just CAN’T be co-incidence.

I would love to have a forum with all the doctors also.  I am daily on the phone or email with doctors.  The cool thing is that with them having understanding of what laser therapy does, they are excited about the prospects.  One of the comments I hear from them all the time is “I see no reason why laser therapy wouldn’t work, why hasn’t anyone thought of this before?”  There is a lot of excitement with the treating doctors, and it makes me feel good that so many want to be involved and are caring and compassionate.

[Andrew Hall DC]

Hi Barry!

I did some checking to see if I could locate the Egyptian study on COPD.  Weird it just disappeared.  However, while doing a new search for it I did come accross another Egyptian study that is actually even more impressive. Realize that the Egyptian study on COPD had to do with laser acupuncture and not directly using laser into the lungs, impressive though as all the patients improved using the 6 minute walk test.  The other study I found again was about laser acupuncture for a variety of chronic lung diseases, including interstitial lung disease, COPD, asthma, and bronhiectasis.  The name of the study is: Role of laser acupunture in chroinc respiratory diseases. Again, the results for all of these chronic lung diseases had significant improvement compared to a control group.  This study can be found at:

https://doi.org/10.1016/j.ejcdt.2014.06.012

So glad you are getting started with laser therapy Barry!

Andy

[Andrew Hall DC]

Marsha,

Wonderful!  So glad you feel some relief!  I found Dr Cebek to be a great guy and knew that once you got in there with he and his staff you would be comfortable. I could tell on the phone he was very caring.  We will all welcome news on how things go over the next few weeks, but for now just happy that things are going well and you are up and around.  It may take a while to get acclimated to the pulmonary rehab but I know that will be very helpful for you as well as everything else.

Andy

[Andrew Hall DC]

Hello Delio,

As you may already know I am very particular about which lasers you should utilize. I feel that by far K-laser is the best due to the wavelengths and penetration of their lasers. Again, serious disease requires serious lasers.  In my search, there are about 21 k-laser providers in and around Toronto.  I suggest that you send me a private email and we can get this figured out for you. I can tell you, just like the vast majority of laser practioners, they have been trained mostly for musculoskeletal conditions, but if they are given the protocol they will know exactly what to do.  Send me a private email at   [email protected]   Also, go to my website, which is located at      summit-chiropractic.com    and click on IPF.  You will see an article I wrote on laser therapy and especially how it relates to lung diseases. At the end of the article are current treatent protocols. Print the article for the doctor.  It will be good review for the doctor as far as the photochemical processes that take place and the protocol. I’m always happy to answer any questions for you or the doctor.

Dr Andy Hall

[Andrew Hall DC]

Hello Delio,

Were you able to find a provider in Toronto?  I have helped others in that area find a provider and there are a LOT of them in the Toronto area.  Please let me know if you need help.

Dr Andy Hall