New Forum: Laser Therapy Results.

[Michael Lamkin]

Great idea Charlene. I’d be really interested in seeing the results whether they be favorable or otherwise. It would be great to find a meaningful treatment without the use of drugs which I personally despise

Have a great day!

[Charlene Marshall]

Hi Michael,

Thanks for writing! I completely agree with you, it would be nice to find an effective solution to manage the IPF-related symptoms that do not include drugs. I can’t provide any personal experience with laser of course, but know others speak highly about it so I thought if we could capture some of their experiences, along with quantitative gains here, it might help others make an informed decision about laser – should they choose to look into it. I’m grateful to everyone willing to share their experiences here; it is a special group of people wanting to help others in this forums community. Take care, and thanks again for writing 🙂
Charlene.

[john styles]

I have done 25 laser treatments, started with a treatment on Jan 17 then did next two weeks at 3 x a week and then 4 weeks a twice a week and then next two weeks at three times a week and last two weeks at twice a week and now scheduled for once a week. Results of a followup lung function test showed improvement. Saturation’s improved 2 points and energy has improved. I am walking 1  1/2 miles a day.  2  1/2 years ago I was  diagnosed  with usual interstitial  pneumonia.  Encouraging seeing improvement.

[Charlene Marshall]

Hi John,

So great to hear from you – I’d been wondering what you’ve been up to lately! Thanks for connecting back and letting us know how the laser is going for you. I would suspect even energy levels improving you’d consider a bonus? I certainly would so I am glad to hear that. Kudos to you for walking each day, and happy to hear your function test showed improvement too! We’re looking at capturing these results for others considering laser – look what you’ve helped to create 🙂 Glad to hear from you and hope you continue to do so well!

Charlene.

[Karen Frame]

Hello all.  I am not sure if I am doing this correctly but here goes.

i have completed 8 sessions of laser therapy and have felt a difference in several areas. First, I definitely have more energy and my mood is better.  I walk at the mall a couple times a week.  I have been stopping every 5 min to bring my oxygen back up before continuing for another 5.  My O2 was dropping to mid 60’s and taking about 2+ min to recover to 94, I was using my POC at level 5.  I would make the mile in 6 intervals. Last time I was a able to do the mile in 5 intervals and my 02 mostly dropped to 70 and my recovery was about a min.  At home I use a glider, started at 12 min on level 5, and my O2 would drop to high 60s after that time.  Recovery was also slow.  So my improvement here has been pretty dramatic as I now go for 16 min on level 4 and my O2 just dropped to 87 and was up to 92 in less than a minute.  I have to add that I have been on a strict anti inflammatory diet as well which means no dairy, soy,grains, legumes, or fruit other than berries, so most vegetables (but not all),a small amount of good protein and berries.  I will eventually be able to add some things back in.  Hope this wasn’t too much information.  Good luck to everyone and keep on keepin’ on!

Thank you Charlene for making this information available to us all .  YOU are an angel!  And thanks to Dr. Hall for giving us something we can actually do to help ourselves.  Bless you

 

 

 

[Charlene Marshall]

Hi Karen,

You absolutely posted correctly, thank you for sharing your experience and results of the laser therapy! I am really glad you’re getting some positive results, and feeling better. A lot of people have noticed an improvement in their moods I’ve read, and I would consider that an equally important bonus as this can be what is so difficult for many of us living with IPF. Really glad to hear some of the quantitative results as well, this is truly wonderful news for you. Do keep us posted on your continued progress if you wouldn’t mind 🙂

Take care and thank you for your kind words, they started my Saturday off on a wonderful note. I am just so thankful to be part of such a wonderful online community.

Wishing you well,
Charlene.

[Kristina grilo]

I’ve been doing the laser treatment, I’m on number 16. When I first started, my 02 was 94, now I’m at 96, 98. I have not done a PFT because I dont have health insurance and the test is 700 dollars, I will do one if needed but for now I don’t see the reason. I do have the CT scan that was used to diagnose my IPF, will do another one in a few months to compare. The laser therapy is most definatly working, I feel way better than just 2 months ago when I was diagnosed. I’m going to continue with the laser and hope that a cure will happen soon…

[Charlene Marshall]

Good Morning Kristina,

Thank you so much for sharing your experience with us, and I am thrilled to hear that you feel laser therapy is working for you. I am finding myself a bit in disbelief that so many people are finding this beneficial, and glad to see some of it captured here for others who might be considering it. Wishing you nothing but the best and thank you for sharing your experience with us. Please feel free to write any time 🙂
Charlene.

[george connell]

I am about to begin a laser treatment program.  Is there a protocol or number of treatments per week/months?

 

Thanks, George C

[Peter Goodwin]

Hi George

According to Dr Hall the current protocol is:

10 watts, continuous wave. 5 minutes on front of chest, 5 minutes back of chest both with an intercostal application. 3x per week for 4 weeks, then twice per week for 4 weeks then once per week thereafter.

Good luck.

[Steve Dragoo]

@georgeconnell

Hi George – reach out to Andy and also see his protocol on his website.  The total joules is important too.  The k-laser my doctor uses does not have manual settings so we modified the time to ensure I got enough joules.  It also modulates not continuous and that may be better or at least equal to continuous because modulation puts out different light.  Success on your treatments. -Steve

[Peter Goodwin]

Just a quick update. I try to take short walks daily but last weekend I decided to start timing my walks over a specific distance. I figured this would show progress, good or bad, over time.

So, seven walks in all. Only a short distance. My time on 5 of the walks was within 10 seconds of 7 mins 30 secs. On the two other days I had my Laser therapy and took the walk when I got back – and those times were 7 mins 1 second and 6 minutes 41 seconds. A truly remarkable difference on the Laser days.

[Charlene Marshall]

Hi Peter,

Thank you for getting in touch and sharing this update on your walking times following laser therapy. The improvement noted is great, way to go! This will help others see a tangible difference that laser seems to be making for so many people. I haven’t tried it yet, but hope all the results on this thread (in whatever capacity they’re captured) helps people make an informed decision about whether or not laser therapy might be helpful for them. Thanks for contributing to that Peter!

Regards,
Charlene.

[Terry Moriarty]

Has anyone using laser therapy seen improvement in their PFT DLCO percentage?

I’ve been waiting on making the decision on laser therapy because I started a medically supervised weightloss program in October. I wanted to see if there were improvements from that before starting something else. I’ve lost 50 lbs. so far and have seen lots of improvements. Lower lpms, walking farther, gone from wheelchair back to walker. FVC, FEV1 and TLC improved. But DLCO remained unchanged at 19%.

Thus my interest in knowing about laser therapy’s impact on DLCO.
Thanks.

[Steve Dragoo]

@tmoriarty

Hey Terry,

That’s terrific on the weight loss. Did yo9u do any autophagy (random fasting at least 16 hours)? I am losing weight too as it is the single easiest most can do for improvement in endurance and even strength.

Kindly explain your lpms and DLCO acronyms.  – New to me… Steve

 

[Tom Dowell]

I changed to a chiro that has the lastest 20w Klaser from one that had the 10w Klaser. It has a built in lung protocol. I have had 4 treatments with the 20w and have seen improvement over the old one. My cough is about gone. Has anyone else ussd the newer Klaser?

[Terry Moriarty]

DLCO = carbon monoxide diffusing capacity. It is a measure of oxygen/ carbon monoxide exchange through the lung walls. My score of 19% is considered to be extremely low.

LPMs = liters per minutes for oxygen. I’ve been on oxygen for 7 years. My prescription is now 6 lpms, however, at my last 6 minute walk I used my portable oxygen concentrator at 6 pulses per minute or about 3.6 lpms. That’s an excellent improvement.

The diet is a very low calorie ketogenic diet. under 1000 calories/day. must be medically monitored. I was already obese and had gained over 100 lbs when on prednisone from 2011 to 2014. I managed to lose 70 lbs on my own. Took 4 years. Then I plateaued. Started this diet last October and have lost 50 lbs so far. This is working for me and fairly easy to keep up with.

I was showing all the signs of endstage ILD, including difficulty eating. It could take me 2 hours to eat a chicken caesar salad. I was totally out of breathe. When my FVC dropped from 45% to 30% and DLCO from 25% to 19%, I knew I had to do something. All my doctors said lose weight.  My FVC is back up to 40% and I’m walking more. So I’m sticking with this program.

[Charlene Marshall]

Thanks for breaking down the commonly-used acronyms Terry! I know this will be really helpful for folks new t the forum, or even those pondering our regular use of them. Appreciate your sharing about where you are in relation to these measurements/tests as well. 🙂

Take care,
Charlene.

[Steve Dragoo]

@tomdowell

Hi Tom,

The treatment I get is with a preprogrammed format and we use the Thoracic program – which modulates the NM, at 12 watts, and about 11000 joules.

My lung situation is more complicated as the last CT scan last week showed several cysts, sometimes they cause a cough. Also, have an enlarged lymph node that the doctors are discussing what to do if anything.

The cough diminished a lot but mostly from serrapeptase before I started the laser, however as the cysts grow the cough will most likely increase.

Hope that helps you,

Steve

[Lorraine]

@steve-dragoo:

Are your doctors ok with you having laser treatment, given that you have several cysts and enlarged lymph node?

The reason I ask is because  because I Googled: Low-Level Laser Therapy contraindications and read ”Do not laser potentially cancerous lesions—LLLT can stimulate proliferation of existing cancer cells.”

My concern is that I have nodules on my lungs, most likely benign, and a newer larger one, prior to laser treatments. Dr. Hall looked at my last two CT scans and did not think the treatment would be harmful (to the nodules), instead he thinks the treatment will help.

That said I am just wondering about your CT scan results since having laser treatments, better, worse, stable?

Thank you.

[Andrew Hall DC]

I just got my results from my last PFT done on 4/10/19.  I am still better than when I had my first one on 8/26/14.  I am not on Ofev or Esbriet, gave up the inhaler as I found it was doing more harm than good, especially as far as the cough goes.  Still using laser once per week.

8/26/14   FVC 3.35   FEV 246   FEV1/FVC% 69

4/10/19   FVC 4.34   FEV 3.03  FEV1/FVC% 70

Andy

 

[Peter Goodwin]

Hi @drandyhall,

Excellent news on your PLT’s, gives further confidence to those contemplating Laser therapy.

6 or 7 weeks ago you posted on facebook on K Lasers progress with a ‘science based’ protocol for lung diseases. Are they any nearer to establishing a consensus on what works best?

Regards

Peter

 

[Andrew Hall DC]

Hi Peter,

Dang, we are SO close, but it has been painfully slow for me working with doctors spread out all over.  One of them has had some serious health issues that has put things on hold.  I truly hope it is complete very soon. I will let everyone know as soon as it’s done.

Andy

[Steve Dragoo]

@lorraine

Hi Lorraine – no she does not know and I saw that study before I first started the laser.  Enlarged lymph could mean a number of different issues or none.  I have had a slightly above average WBC for many years and often wondered if my body was battling something that had not been uncovered.

The reading on the CT scans is that the cysts and fibrosis are stable. Lymph may be an issue. I sent the reports to the laser doctor and we will talk about them Tuesday.

I need more information from the pulmonologist about the lymph and what they want to do so that could change my thinking about the laser. I could also do fewer laser treatments.

Thanks for mentioning this.

Steve

 

[Lorraine]

@steve-dragoo:

Glad to hear the CT scan results are stable. I hope you continue to get good news and the talk on Tuesday goes in your favor. Sending positive vibes.

Lorraine

[Lorraine]

@steve-dragoo: https://www.coldlasers.org/therapy/contraindications/

[Lorraine]

@steve-dragoo! Thanks Steve for your insight and comments concerning the link I posted regarding low level laser therapy contraindications. You put me at ease.

[Charlene Marshall]

Hi @drandyhall,

Thank you so much for sharing some quantitative data with us regarding your PFTs! So glad you’re doing better on this recent test, compared to the first one in 2014. Even to have our PFTs maintained over a few years; I’d consider this a win. Thanks again for sharing!

Just curious, as everyone seems to have a difference experience with inhalers… which ones were you prescribed? I have been on Symbicort (but I can’t take a deep enough breath in to use a turbuhaler anymore) and now Sprivia and sometimes ventolin as a “rescue” inhaler. Undecided how effective these are for me at the moment. Curious to hear your experience!

Warm regards,
Charlene.

[Andrew Hall DC]

Hi Charlene,

Yes, I think I’m really winning this battle with IPF.   The PFT’s are still better than when I was first diagnosed, and my resting O2 continues at 97.  So much for the pulmonologist’s prognosis that I would be on O2 by now.

I was on Symbicort, but the thing is that every time I used it I would end up with coughing fits for quite a while afterwards.  My doctor changed it to Bevespi (sp?) and the same thing happened.  I thought that this can’t be healthy, besides my skin has become fragile from it and I think it’s making my hair falling out faster.   Also, during the PFT, they would do a pre tx test and a post tx test, and I was worse after using the inhaler, though I know it wasn’t Symbicort, I found that not only subjectively was I not as good, but objectively as well.  I just seem to do better without an inhaler at all.  I was given a rescue inhaler on diagnosis, but have only really used it once when the smoke from the nearby forest fire was making it tough on my lungs.

[Charlene Marshall]

Really happy to hear this Andy! I, too, am happy that the pulmonologist’s prognosis of when you’d require supplemental oxygen was wrong. Kudos to you in all the work you’ve been doing to maintain your stamina, and PFTs despite having IPF.

Interesting to hear about your experience with inhalers as well, thanks for sharing that. Yes, the Symbicort made me cough drastically after using it as well, but I think it was more the deep inhalation vs. the actual medication I was taking in. I can’t be certain of that though. The Sprivia is much easier to consume, although I’m not sure whether it is effective or not yet, I don’t seem to have any side effects from it so I am taking it as prescribed. Glad you’re managing well without them so far – I suppose the less medications/steroids in our system, the better overall, right? Enjoy your weekend! I hope your weather is starting to get nicer there. While our temps are very slowly warming up, we’ve seen incredible amounts of rain fall and some areas of the province have declared a state of Emergency due to rising waters/flooding. Sad what is happening to our earth…

Take good care,
Charlene.

[Steve Dragoo]

@lorraine – you sent me this and it is the reference I was speaking about earlier. – Steve

[David Swain]

Hello everyone. I’ve been really interested in reading the posts from all who have experienced an improvement due to Laser Therapy.

I started K Laser on 23 March and have had 10 treatments so far. I had high hopes of a similar improvement. Sadly, however, if I’m honest with myself, I haven’t noticed any significant change. The only measurable one is my resting O2, which is the same at 96%.

I’m struggling to find something else I can measure in a meaningful way. This is possibly because, I’m in early stage and have little difficulty with gym workouts or walking for 6 mins, although my O2 often goes down to below 80% while doing these. Maybe walking uphill is a little easier, but again this is very subjective and varies from day to day anyway. I intend to continue with the laser until my next PFT tests in August, when I will have meaningful figures to compare.

David

 

 

 

[Charlene Marshall]

Hi David,

Thanks for sharing your experience with Laser Therapy. We know it may not be for everyone, realistically, but I am glad you’re going to continue trying if you feel it might benefit you or give you some data to compare against come August. I wonder if @drandyhall might have any additional suggestions to optimize the laser and see some measurable differences? I’ve tagged him here just in case, but no pressure either Andy! I see Steve replied as well regarding the protocol, something possible to consider as well. Thanks again for writing and I hope this note finds you doing well others 🙂

Cheers,
Charlene.

[Andrew Hall DC]

Hi David,

Your resting O2 is really pretty darned good, and you may not see it come up, maybe just a point or so.  Because you are starting laser early in the disease, you might not see a whole lot of positive change.  I started right after diagnosis and had some decrease in the cough, but like you I was still very physical and I maintained that.  My O2 levels were at 97 and that is pretty much where it is now.  Where I saw the big change was with the PFT’s.  As you can see be my post above, 4 3/4 years later my PFT is still better than my first one.  I still have the cough, just not nearly as bad as it was, and I need to take my time hiking uphill esp at higher elevations.

Your 6 minute walk test is still a good way to monitor your progress.  You may find that the O2 levels don’t fall as low as you continue with laser.  Again, I think that the main thing is that your disease does not progress.  If you can just arrest or even slow the progression you are way ahead of the game.

[Lorraine]

@davidaswain: I have not noticed any significant changes on my end either and we seem to be on similar tracks. I expect to have a CT scan next month and hope the treatments have slowed down the disease progression. Best wishes, Lorraine

[Steve Dragoo]

@davidaswain

Hi David,

Have you confirmed the laser doctor is doing the correct protocol and amount of time each side?

When I started the laser the end of January we were using the wrong protocol the first 3 treatments.  Since then I have had 18 treatments and increased endurance with O2 generally holding. There are good days and not so good days but I also do a lot more than the laser. So please ask as I don’t want to bombard with unuseful information.

The doctor did 2 recent CT scans, one mid-January the other mid-April and the disease is holding.  She did them this close because I pushed far too hard the last 6-minute walk test and O2 dipped to 85 for a nano-second and she knows I am going on a very long flight soon.  My situation is a little complicated because I have several cysts and enlarged lymph node in the left lung which does affect me sometimes. So it is difficult to say exactly how much the laser is helping.  Sent the laser doctor all 3 CT scans from the past year so I will find out his opinion Tuesday when I go there again. I have decided to stay at 2 laser treatments per week until I leave.

Best to you,

Steve

[David Swain]

Hi Charlene, Andy and Steve. @charlene

Thanks for your encouraging messages. I forgot to say that initially I had some decrease in my cough, but that seems to have returned, although there is little phlegm and it isn’t too bad.

I too, do a load of other stuff. Notably exercise (4miles a day, 10,000 steps, gym), serrapeptase and mitochondrial repair (Carnesine and Cq10), antioxidants etc.

My pulmonologist here in UK is reluctant to do CT scans due to the high radiation dose but he plans another X-ray when I see him in August. I’ve not had an official 6 min walk test, so can one of you tell me how I should be measuring? Is it distance, steps, O2 level during or at end?? I can do 750 steps in 6 mins but my O2 will be down sometimes below 80. Although this doesn’t make me feel particularly breathless and I’m not on oxygen.

Andy. You previously confirmed that my treatment dose was OK. – 10watts average, 20w peak, phase time 45secs, 660, 800, 905, 970nm, 4 mins each lung, each side (16 mins total). Do you suggest any changes in this, please?

Go safely On your flight Steve. All the best David

[Steve Dragoo]

@davidaswain

Hi David – that’s good stuff you are doing. Yes, I was surprised when the doctor did 2 scans 3 months apart.

The 6-minute walk test is a control for distance and time and maybe some elevation. Then sit and look at O2/HR, 85 is a red line for O2, rapid pulse may be an indicator of PH. I was not too concerned over the last one when it dipped to 85 for less than 2 seconds because I know how hard I had worked the previous few days and I pushed the test where I walked about 100 meters farther than before.

My harsh cough has improved significantly from the laser and as you know mucus is greatly diminished by the serrapeptase. A big surprise from the serra is most of the capillary varicose veins on my feet are gone. To help my heart I also take nattokinase.

Regards my flight, this will be my fourth trip to the Philippines and I get great energy from going home after a 14-month absence… Steve

[john styles]

I thought I would update my treatments, with Lorraine making me aware of the acupuncture points I added the acupuncture points to my treatment 3 weeks ago. I take a pulse oximiter with me and the last two treatments I was 91 or 92 prior to treatment but after the acupuncture points were done for about 3 minutes I was 98.  The acupuncture points are on the Egyptian study and the laser needs to be reduced to 1 watt.

[Andrew Hall DC]

Wow John,  that is VERY impressive!  After 3 minutes your O2 was up to 98, how long did it stay that high?

[john styles]

Hi Andy,  not very long about 3 minutes, then instead of 91 or 92  it goes down to 94 and stays at 94 for about 10 minutes but thru the day it bounces back up to 93 or 94 but impressive to see.  I have done this two consecutive weeks, we have tried 3 watts but it is to hot. I am still doing 12 minutes with 3 minutes over each lung at 9 watts then the acupuncture points at one watt with a narrow head on the laser.

 

[Kate E]

@johnstyles  @drandyhall

John, you referred to acupuncture points being in an Egyptian study. Can you tell me how to get to that?

thanks,

Kate

[Steve Dragoo]

@caneelbay1

Hi John,

That’s good news for you and I hope you find ways to keep O2 up after the treatment.  One thing I do is really surprising me – workouts at the gym.  I try not to overdo it but also make sure I do enough. So at first, I am a little tired but then my energy increases and my O2 stays a point or 2 higher consistently.

I am certain serrapeptase, nattokinase, B complex, and laser help the O2 maintain a little better too.

Steve

[john styles]

Here is the link to the Egyptian study.

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

[Kate E]

@johnstyles

Thank you for the link to the Egyptian study!

Kate

[Ron Johnson]

@drandyhall

I have completed over 48 treatments of laser therapy. Below are the numbers for my two most recent PFTs, one before starting the laser and one after. I am also taking OFEV (100 mg), and multiple supplements for nausea control (successful).

FEV1 % Pred    DLCO % Pred       FVC % Pred

January 9, 2019                                             58.9                    38.1                        49.0

April 30, 2019                                                58.6                    39.4                       50.6

Volume is considered Moderate, while Diffusion is considered Severe. This report is considered Stable, which is great news in the world of IPF.

I believe the laser is helping, but I am also doing physical therapy, massage therapy, exercise, and taking supplements for general health. There is no way to tell what is helping and how much in specific numbers, but I plan to continue all of these therapies moving forward. Subjectively, I believe I feel better, with a little more energy and more good days than bad compared to first of this year. However, I think we all recognize the emotional component of this disease, which has a dramatic effect on the physical. Navigating the balance of how much to do when feeling good and how much not to do when feeling bad is an ongoing learning process. Your comments on this forum have helped. We all appreciate those who brought forward the opportunity for laser therapy.

I look forward to Dr. Andrew Hall’s @drandyhall new protocol when it is complete. Questions for Dr. Hall: Will the size of the laser spot (or laser head size) be included for energy density reasons and will the sweep rate across the skin be included? I have had three different technicians apply the laser as well as two different lasers, and they all use a different approach. The threshold of pain (too much heat) is a little hard use as a guide. Also, it would be good to include protocols for both Class 4 lasers, the K-laser and the Lightforce laser if possible. As an aside, my physical therapist asked why the laser power of 10 watts was so low compared to the normal 25 watts used for muscular or joint therapy using the laser? My guess is its the energy density that varies with the type of laser head being used…? Of course, the sweep rate and energy density are directly related. Thank you Dr. Hall for your dedication to helping others with this challenging disease.

God bless all of you as you continue this journey to maximum health and a positive outlook on life.    Ron

[Andrew Hall DC]

Hi Ron,

I would have been nice to see more dramatic changes in your numbers, but as you said, in the world of IPF stable is good.  And the good thing is that even though not dramatic we do see improved numbers.

I will be in touch with the doctors today in regards to the protocol. One of them has been dealing with some serious health issues that has put things on hold. I can tell you that the protocol will be different for K-laser and Litecure lasers as you can’t get real specific with the modulation with a Litecure as you can with a K-laser. Yes, the spot size makes a difference, but the speed of the application doesn’t make a big difference unless it’s too slow as we don’t want to overheat the tissues.  10 watts is a recommended minimum, but it would be fine to use 25 watts.  The time of treatment will be reduced at 25 watts as more joules are produced at higher wattage.

Anyway, happy you are feeling better and that your numbers are stable!  I think that all of the things you are doing are working well for you……..

Andy