LED red intranasal light therapy

Sasha

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I'm thinking it makes sense to try the 810nm intranasal unit since that's the frequency that they reckon targets the brain rather than the blood (if I've understood that correctly).
 

Chris

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Sasha, thanks for pouring a flood of news into this thread! Yes, I have read that piece by Lew on the Neuro, and he has a similar piece on his development of the 810, which is very interesting. I just don't know enough about that cheaper thing to comment, but the 3minute shut-off point is really surprising, and the packing of at least two diodes (laser or LED?) into one nasal unit is also surprising. As the person who posted on Cort's site, and who I assume is going to Fred Kahn's clinic, says, they may have been using too high an input. I did comment on this in my longer post above. I am familiar with Margaret Naeser's ongoing research for the Vets--looks frightening!

I have also been in touch with another person going to Kahn's clinic in Toronto, and her last mail suggested she was improving, but not yet enough to recommend this treatment to others--and of course it is expensive. Prof. Naeser is using Vielight units in her research, as well as MED-X units and that helmet thing. She thinks it is important to take the intranasal route in addition to the transcranial one, since it offers the easiest access to the cerebellum and mid brain where much of the ANS is situated--that old part of our complex brains. The bone between the brain and the nasal cavity is much thinner than the external skull.

Lew has focused the transcranial capsules of his Neuro on the Default Network, but a preliminary investigation of that left me with a feeling that it's functions are not yet clear at all, and so I wonder... I fail to see how the 810 will reach that network, too. I frankly try to watch TV or read while using the nasal units, and that seems to me one of their advantages--one can do other things while treating oneself. I would be reluctant to give that up. Lew has some ongoing research on both the 810 which he has promised a blog about, and the Neuro, which is being tried out for kids in the Autism spectrum--it will be good to get some more real life results to put beside that short but informative poster presentation of Rudi improving his dementia (Alzheimer, or vascular?) by using the 633 and 810.

Margaret Naeser's work with Vets is, I think, using a large-scale and intensive approach but applied I will assume only every few days over a defined, not too long period, with maybe breaks between two or three sets of sessions. I don't know that, but I will for the time being assume it. So far I think the basic approach of not using high intensity for long periods makes sense, and I think using the low level intranasal units over a long period, with periodic short breaks, has the chance of providing a minimally intrusive therapy with slow results but minimal chance of major setbacks. But we can exchange experiences here, I hope.
 

Sasha

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Thanks, @Chris - interesting that you've managed to track down another PWME being treated by Fred Kahn.

Frustrating that there are no completed high-quality trials as yet.

I haven't been able to find any info about the MED-X device that you mentioned. I wondered if you could say a little bit about it?

Also curious as to why you started out with all three things - the MED-X, and the two wavelengths of Vielight. You weren't tempted to start off with one and work your way up? :)
 

ScottTriGuy

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Hey folks,

I'm the guy who replied on Cort's other site about using laser therapy. Indeed, I am seeing Dr Kahn, though I haven't been to see him in a few months.

I started on April 22 - I remember the exact date because it marked an upward, though not recovered, trajectory. I also remember the exact date I first had m.e. symptoms, August 10, 2012. Two life changing days.

I've been renting the laser therapy home unit and using nearly daily since April. I use the 'red' and 'infrared' settings. I place it on the back of my lower head / upper neck. I'm contemplating buying a unit.

Though I was interested to learn that the nasal light gets to the ANS better.
 

Sasha

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Hi @ScottTriGuy! Thanks for posting on this thread - that was a very interesting post that you made on Cort's forum.

I'm glad you've found something that's been helpful for you. If you've the time (and energy!), I wonder if you'd like to say what your starting point in terms of health was in April, and what things are like for you now? And perhaps whether you were already on an upward trajectory?

My interest in this (and @Chris's, and perhaps some other people's on this thread) was also started by reading the Doidge book.

What laser unit do you have? A transcranial one? It sounds as though you can switch between red and infrared.

I was thinking of getting the 810 nm intranasal LED unit (I have ANS symptoms as well as the usual ME stuff of fatigue, PEM, insomnia, etc. and read that the intranasal route is better for getting close to the bits of the brain that control the ANS).

Any tips? In your message on Cort's site you seemed to think that you'd rather overdone things at first.

I'm still surprised that no-one responded to your post!

Anyway, thanks again for posting. I'm finding this a very interesting topic. I wish we could all do something a bit more systematic that would lead to some decent data for other PWME but I don't think we're really in a position to do that very well. We can't run a placebo control for ourselves - but I'm thinking of getting myself a Fitbit Charge HR to measure my sleep and activity to at least have an objective measure of those things as time goes on.
 

Chris

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Hi, Sasha–I shall try to answer those questions reasonably shortly, but the history is a bit complex! Like you, I was fired up by Doidge’s book–I had long known his previous book, so got this quite early–great stuff–I want one of those PoNS units, currently being tried on MS at McGill/Montreal Neuro. Decided I wanted one or two of the units used in the papers by M. Naeser and A. Saltmarche listed in his notes, so wrote to Margaret Naeser, who put me in touch with both Anita and Lew Lim–she copied to them, and both answered to me. Decided to start with the MED-X units because they had been proved in published research, discussed with Anita, and bought two of the capsules ( see http://www.medxhealth.com/cmsAssets/docs/pdfs/Brochures/700-0142-7109-RevD_Home-OG-Brochure.pdf )–pictured is the older model, mine are a little different, and white. She offered me either a 3 capsule console that had been used in one of the research projects, or two single console units, new or used. I ended up buying two new units at a fair price–I am 82 and if I am going to improve it had better be soon, so was prepared to spend some money on a project that looked both promising and interesting. Anita asked for some feedback, but I made it clear that I kept open the possibility of adding a Vielight at some point–Margaret Naeser had made it clear that using both routes was important.

So I started using the MED-X units, aiming to slowly raise the dose using as targets two papers by Naeser et al listed in Doidge’s notes and found in PubMed, aimed at stroke and TBI ( concussion, etc) patients, with "neurodegenerative" diseases like AD and PD as additional targets. But then discovered that a local store carried the Vielights, went to take a look, was offered a free instore trial of the 810, went home and realized that the tinnitus that usually accompanied music had resolved, and a few days later bought an 810. At the same time I recommended a 633 to a friend who while decidedly not ME/CFS has some circulation problems in her right calf and some sinus congestion that I thought the 633 might help. So having learned how to programme the MED-X units (they are designed for use by health care professionals) started ramping up my protocol, meanwhile beginning a major research project into all this fascinating stuff.

As I recorded above, I ran into some problems, but they are now resolved, and I am continuing to use all the units–I added the 633 a couple of months ago after seeing what it did for my friend’s calf–impressed by its work on circulation problems. And Lew told me that in addition to Rudi he now had quite a few users who found the combo very effective. So I did in fact start out with one, and then added the two Vielights sequentially-

To add a bit to my current thinking, it has become clearer to me that though we share some things with Parkinson’s people, we are considerably closer to MS, and so refocused myself and found those very few papers on LLLT in MS, and reshaped my picture of what I was trying to aim at. One problem of course is that we still have no clear idea of the etiology of our disease. But we know that the ANS is central–Julia Newton’s group has made that clear, and I like the comment attributed to Nancy Klimas on post exercise gene expression studies—"first the ANS tanks, and then it takes the immune system down with it." And we have documented circulatory and cardiac problems. In addition, with the Rituximab story updated, there are now strong suggestions that we suffer from an autoimmune attack focused on the endothelium, which of course plays a central role in circulatory and heart activity.

The 633 aims at blood irradiation, and showed it could do good work there with my friend–and now with my varicose veins. Maybe it is partly responsible for the slow diminution of my OI. The 810, using a higher frequency, and also pulsed delivery, can penetrate further, and aims at reaching the brain stem and improving function there, including the ANS. Sounded like a win-win solution to me, and I think it is working, albeit slowly–my age is doubtless a factor there.

A few more things I have I think learned. One is not to use a pulsed unit like the 810 with another pulsed unit–that might confuse the brain. It would be OK to use the 810 with a continuous wave unit. Don’t overdrive–the "hormesis" principle–a tiny bit may be useless, too much may damage, get it just right in the middle–though noone knows exactly where that is. We need to recognize that we are participating in an ongoing and very interesting experiment; we are part of the experimental team, not just passive patients. There is ongoing discussion about the best wavelengths for specific purposes ( essays by T. Karu and M. Hamblin), pulsed or continuous (pulsed seems to be winning–deeper penetration, less danger of heating effects), total energy delivered, rate of delivery: all are still being discussed.

Finally, a few details on the MED-X capsules. Each one contains 9 diodes set at 633nm, power 1mW, plus 52 diodes set at 870nm, power 9.5mW, delivering in total 1 Joule/cm sq. per 45 seconds. Treatment area 22.48 cm sq. –they are quite small, about 3ins diameter. They can be set to light for up to 20 J–this means around 15mins Continuous Wave, around 30 mins pulsed at 50% Duty Cycle. The pulsing can be set anywhere from 2 to 2,000 hz, duty cycle continuous or from 10% to 90%. So almost infinitely adjustable. Since they are designed for programming by health professionals, they use a programming key, which is then replaced by the capsule itself and handed over for home use. One has to learn how to programme them, but details are given in the little booklet that comes with them; a bit tricky, but not difficult. If I can master it, so can you. Each capsule comes with its own power and control unit–quite small. They come with removable straps for use on joints and limbs, but those are too short for transcranial use, and are removable.

They are also available as a set of 3 capsules controlled from a single control unit. Two separate capsules can be hand held over the chosen areas of the skull; to use a 3 capsule unit, you would need to get something like a breathable swimming hair cap to hold them in place on your head.

I have no idea how this compares with the units rented and sold by Fred Kahn (see his Bioflex site), and would be interested to learn.

Finally, Anita Saltmarche told me she handles retail requests for MED-X, who are set up for sales to professionals–she worked for the company for several years, and was associated with the development of these units. I have her permission to give out her email to anyone seriously interested in buying these units, but I will not give it here. PM me if you want to know more.

I like the units, and they are much cheaper than the Bioflex units from Kahn’s outfit, though probably less powerful and do not contain any laser diodes. I have not done a thorough check of what there is available on the market–there are quite a few–but am content to keep working with these units, some of which Margaret Naeser is still using in her research treatment.
 

ScottTriGuy

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@Sasha

In April I had the most extreme symptoms I've experienced - I was housebound - deep fatigue, nausea, malaise, brain fog, constipation, pain/pressure back of head/neck, very strong heart beat, short of breath, anxiety attacks, disrupted sleep.

By the third day of laser therapy all of the above lessened a helluva lot, but did not disappear. During the initial 5 days of treatment, I was also receiving an extra treatment with what I'll describe as a laser 'gun', that got deeper into my skull. If you haven't, its well worth reading both Doidge's books - I think he describes it there.

(Also from his second book, I'd be interested in trying the PoNS, portable neruo stimulator, it is being researched with MS patients who have gait problems and war veterans with traumatic brain injury. I believe it will be for sale in Canada in 2016.
http://www.heliusmedical.com/ )

I did seem to have an 'over-reaction' a week or so into it, but in hindsight I had increased the frequency on my own accord. One of those, 'If once a day helps quite a bit, then twice a day will help twice as much'. Since that 2 weeks of every other day, I've been using it daily. I have the Bioflex Home Unit II -
http://torontopainrelief.com/products_rentals_home2.html

Laser therapy allowed me to return to work - albeit with mild to moderate symptoms - I've also recently had genetic testing via 23andme and organic acid testing and have tailored my diet accordingly - and had a good feeling day last Wed but did too much - "If walking 30 minutes went ok, another 15 will be ok" sort of thing - well, it wasn't - so still learning that less is more lesson.

In addition to what Doidge finds about laser therapy, I theorize that it is helping stave off depression symptoms. I know many folks with m.e. experience depression as another symptom - and it is now known that inflammation contributes and in some instances causes depression. Laser therapy decreases neuro-inflammation. As does medical marijuana.

I also just got a Fitbit Charge HR a few days ago. Taking a shower causes my heart rate to go over 100, that was interesting to learn. No wonder I have to have a lie down after.
 

Chris

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@ Scott--thanks for adding to this thread! And thanks for giving a link to the device you are using; is it LED or laser? I am going to guess LED, but that is a guess. It looks good, but maybe expensive? Glad you are still doing OK, though a retreat from those first heady days--I had a rather similar response. Can the Fitbit Charge HR give a continuous reading of the HR, or only a short response to a specific request?

And is there evidence that the PoNS device will be available for sale direct to consumers in 2016, or just to health care professionals? I agree it sounds very interesting indeed--though of course if there really is an underlying pathogen constantly mining away within us, it may prove difficult to keep ahead of it and actually make real progress....
 

ScottTriGuy

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@Chris
It doesn't state if its LED or laser - and I'm not sure how to tell. There are 'red' and 'infrared' attachments. I suspect they are LED.

The Fitbit only gives a HR reading when the button is pushed and then for about another 3 seconds. Less then desirable.

I don't know if the PoNS will be available consumer direct, that would be a good question for them.

I concur, its treating the symptoms, not the cause.
 

Sushi

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Thanks for the link @ScottTriGuy.
At the same time I recommended a 633 to a friend who while decidedly not ME/CFS has some circulation problems in her right calf and some sinus congestion that I thought the 633 might help.
The 633 aims at blood irradiation,
Maybe it is partly responsible for the slow diminution of my OI.
I have had a 633 for a couple of years. I had not been able to tolerate it for more than a couple of minutes and after many attempts, put it aside. Now, after reading recent posts, I tried it again and did fine with the full 25 minute cycle. I'll try it again tomorrow, but it is pretty interesting that I can now tolerate it. The only thing I've changed is attempting to treat Lyme and Bartonella in the last 18 months.

Since OI is a "big deal" for me too, this could be interesting!
 

Chris

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@ Sushi; sorry, I really misplaced the comment on OI--it really belongs in the discussion of the 810--the 633 might help some too, though, if it helps tighten up veins--so maybe both are helping--the 633 working on the venous return, the 810 on ANS control.

The other thing that helped a bit was doing what Julia Newton called "home tilt training"--see her short paper, "Home orthostatic training in CFS" (PMID 19912315), from which I quote: "stand with their upper backs against a wall and their heels approximately 15cms from the wall with a cushioned 'drop zone'." "maintain this position without movement for up to 40 minutes or until they experienced symptoms." ( I somehow got the full text without paying--probably wrote to Julia--she is on my short list of favourite people, up there with Doidge).

If there is any danger at all that you might pass out, have someone with you. Very boring--I positioned myself with the TV in view--tennis worked fine for me. Julia claims that for those who kept this up, fatigue was also reduced some. I noted no reduction in fatigue, or maybe a tiny bit, but it did reduce my OI, though it did not disappear it. The "without movement" is important--you are deliberately refraining from tightening leg muscles, etc, and so asking your ANS to get to work and do the job it is supposed to do.
 

Chris

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Just a short quote attributed to Kahn, as cited on p. 146 of "The Brain's Way of Healing":
"His review of the literature had proved to him that lower doses of light, over longer periods, were effective for regenerating tissue as well as increasing the general circulation of the blood in the brain."
 

Sushi

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stand with their upper backs against a wall and their heels approximately 15cms from the wall with a cushioned 'drop zone'.
This is essentially replicating the TTT test, but doing it on a regular basis. Glad it helps for you.

Since I have the 633 and not the 810, I guess I'll just have to see what happens!
P.S. when you make a "tag" it doesn't work if there is a space between the @ and the name!
 

Sasha

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Thanks again for a detailed and interesting reply, Chris!

I want one of those PoNS units, currently being tried on MS at McGill/Montreal Neuro.
Sounds like we all fancy one of those. :cool:

I need to print this all off and think about it again...

Laser therapy allowed me to return to work - albeit with mild to moderate symptoms - I've also recently had genetic testing via 23andme and organic acid testing and have tailored my diet accordingly - and had a good feeling day last Wed but did too much - "If walking 30 minutes went ok, another 15 will be ok" sort of thing - well, it wasn't - so still learning that less is more lesson.
All very interesting, Scott, and I'm glad you've had such a positive reaction.

It's clearly no cure but anything that has the potential to make us more functional is worth a good look.
 

Sasha

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So I think I'm going to get a Vielight 633 and 810.

@Chris, do you have any recommendations for how to start off, in terms of scheduling/duration? I see you're now using both devices daily (I think), using the 633 just before you go to bed in order to get better sleep and at least 10 hours between using the two devices.

And I think you take breaks for a few days every now and then?

Just want to say thanks again for the info - this is stellar! :)
 

Chris

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@Sasha; yes, basically I am using both every day, with the odd day's break--but reluctant to not use one or the other at night, since they do both help sleep; still not quite sure which helps more...the real problem being that one day is never quite like the next with this damned disease!

@Sushi--thanks-will try to remember, but I am still a real dummy when it comes to this kind of stuff! And yes, I think the fact that tilt table testing could become a therapeutic mode emerged when people with syncope problems were tested regularly, and it was found they were improving, so the penny dropped.....but Julia Newton was the first I think to try it out on us.

@Scott; it sounds to me as if you have versions of the LEDs referred to by Doidge on p.140 in describing the sequence Kahn uses in some treatments. I would guess they are excellent units, but am fearful of inquiring into the price, so will happily continue using my MED-X units, which are good too, and already paid for!
 

ScottTriGuy

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Sorry--forgot to forward this--Kahn's Bioflex outfit is giving a series of webinars, and tomorrow's sounds very interesting--here is the site, I hope:
http://bioflexlaser.com/events/webinars/

I am registered, and look forward to it.

I just registered too - I'm hoping they'll cover the heart - I have a very strong beat - not fast, just very strong - my whole body pulses with each beat - and in the last few days I've been thinking of using laser on my heart.

I suppose I should make an appt with Kahn and ask him.