Making Drugs Obsolete: The Electroceutical Revolution - A Fibromyalgia and ME/CFS Perspective

[Cort]

“Every cell in the body is within shouting distance of sensory neurons, so in principle bioelectronics have great potential.” Neurosurgeon Kevin Tracey

This is the first of three blogs looking at major NIH projects which, while not being aimed at fibromyalgia or chronic fatigue syndrome (ME/CFS), could profoundly affect how they are understood and treated.

The NIH's Stimulating Peripheral Activity to Relieve Conditions (SPARC) is exploring an entirely new way of treating disease. It proposes to tweak the electrical circuits (nerves) in our bodies to return people to health.

[fright]

[/fright]These nerves (every nerve outside the brain and spinal cord) control the health and functioning of every organ in the body. SPARC is slated to spend $250 million over the next seven years in an attempt to learn how to manipulate these nerves to reduce pain, relieve inflammation, heal heart problems, fix gut disorders and more.

Nobody knows if the self-proclaimed "high-risk" project will be successful, but if it is it could usher in a new, side-effect free way of treating illnesses that could put drugs to shame.

The peripheral nervous system is stunningly complex but the general idea is not. It simply consists of using some sort of generator to send electrical impulses down a nerve, causing it to fire. The crude technology used today employs a kind of scattershot approach which ends up activating bunches of nerves.

The "Electroceutical" Revolution?

But with better nerve maps and more refined tools it should be possible to activate just the right fibers in the right nerves to, say, stop some inflammatory processes in their tracks. Or to tweak nerves to fix gut problems, reduce pain, reverse heart failure, or treat diabetes. These are just a few of the possibilities proponents of the electroceutical revolution can envision.

These electroceuticals are either placed on the skin or are surgically implanted where they emit electrical impulses that either fire up or silence nerves. They need not be near the organ of interest at all; one device for patients with bladder problems is placed on the soles of their feet.

Disruptive Technologies

“... a unique program management structure.. allows SPARC to swiftly adopt new breakthroughs and emerging technologies, and nimbly incorporate ideas and expertise. These awards have the potential to catalyze next-generation neuromodulation therapies that could bring improved specificity for patients over both drug therapies and previous-generation devices.” SPARC Program Manager Gene Civillico, Ph.D

DARPA - the Department of Defense's Defense Advanced Research Projects Agency - calls these technologies disruptive and they are. We rely on drugs for most treatments but drugs are often slow to work, expensive, and because they are imprecise in their effects, often cause multiple side-effects.

Because electroceuticals could, by turning on or off nerves that control how our bodies work, potentially be able to precisely target damaged areas, they may be more effective than drugs and virtually side-effect free.

An Organized Approach

Instead of letting the field develop on its own in a haphazard manner, SPARC is taking it on in an organized manner. First they're focusing on precisely mapping the nerves in the body and understanding their function. As they're doing that they'll be collaborating with companies which will be building the better tools of the future. The private sector and academia are collaborating on projects as well.

This is the kind of work that only a research funder with the clout and funding capability of the NIH has the capability of doing.

SPARC provided $20 million to 27 research projects in 2016 and aims to boost that to $250 million over the next six years, but that may end up being just a drop in the electroceutical bucket. In “A Spark in the Periphery” Emily Walz reported that GlaxoSmithKline and Verily Life Sciences (formerly Google Life Sciences) are pumping more than $700 million into a company, Galvani Bioelectronics, that will develop miniaturized electronic devices for peripheral nerve stimulation.

DARPA, the Defense Advanced Research Projects Agency, is getting into the act as well, devoting $90 million into the hunt for better electroceuticals. Plus it has its ‘Targeted Neuroplasticity Training’ program — to explore how to stimulate peripheral nerves to improve how the brain learns. Its goal is to speed up the time needed to train defense personnel but the technologies it produces could surely help to enhance cognition in disease states as well.

Plus, two large centers focused entirely on bioelectronics at the Karolinska Institute in Sweden, and the Feinstein Institute in New York, are being built. One estimate suggests the electroceutical market (which includes brain stimulation) will be worth $25 billion by 2021.

Vagus Nerve

The vagus nerve is the big elephant in the room in the electroceutical revolution. The largest nerve in the body, it innervates and is responsible for the health of every organ in the body. The road to stopping inflammation, to curing heart disease, to stopping gastrointestinal illnesses could run, at least in part, through the vagus nerve. Numerous studies suggest vagus nerve activity is blunted in fibromyalgia and chronic fatigue syndrome (ME/CFS).

Vagus nerve stimulators have been used in epilepsy for decades and show promise in fibromyalgia and possibly ME/CFS, but they don’t work for everyone with vagus nerve problems, and are crude compared to what we may see in the future. Fully harnessing the power of this complex nerve (the neck area of the vagus nerve contains over 100,000 fibers) is going to take some work, though, and significant resources are going to be needed to precisely map out its and other nerve pathways. The goal, ultimately, is be able to tweak just the right nerve fibers to effect the results desired.

SPARC just released its first slate of grants in which the vagus nerve plays a major part. One SPARC study, for instance, will seek to understand how stimulation of the vagus nerve endings in the ear impact the hypothalamus, heart and brainstem. Another will determine how activation of the sympathetic nerves leading to ganglia in the neck affect breathing and blood pressure and produce inflammation.

Almost half of the SPARC funded studies will focus on the "second nervous system" -- the gut. One will map the vagus nerve innervation in the small intestine to learn how it affects gut motility and functioning in hopes of finding new ways to treat the pain associated with irritable bowel syndrome and other "sensory" gastrointestinal disorders. Another study will identify all the genes expressed by the nerves in the gut in the hopes that researchers will be able to manipulate specific neurons in the gut to improve gut motility or movement (or the microflora).

Reducing Inflammation

The immune system may ultimately be the biggest target for ME/CFS. It became clear in 2000, that besides everything else it does, the autonomic nervous system is also an important immune system regulator.
It was then that Kevin Tracey and others discovered an "inflammatory reflex" which senses inflammation in the body and relays that information to the brain, which then prods the vagus nerve to tell T-cells in the spleen to tamp down that inflammation.

[fright]

[/fright]That message may very well be getting missed in ME/CFS and FM -- two possibly inflammatory disorders with blunted vagus nerve activity. Tracey founded a company called SetPoint that hopes to use electroceuticals to reduce inflammation by activating the vagus nerve.

SetPoint recently announced it had been able to reduce pro-inflammatory cytokine production (TNF-a) by targeting a fairly select group of vagus nerve fibers. That could spell good news for SetPoint's future given the multi-billion dollar market existing for cytokine inhibitors. SetPoint says its implantable microregulator will last for 10 years.

New Tools

Developing new instruments is a major goal. To that end a Colorado team is developing an optical or light probe that will not only be able to report on the activity in the different branches of the vagus nerve but which stimuli can activate them. A New York team is developing a wireless tool to monitor the activity of vagus nerve endings that innervate the gut.

Stanford University is producing ultraminiaturized stimulation devices that can be injected rather than surgically implanted into deep tissues. University of California at Berkeley has produced a long-lasting dust-sized sensor that can not only monitor nerve traffic but manipulate it as well. Another group is developing viral constructs capable of targeting specific sensory neurons with the goal of adding people with interstitial cystitis and similar diseases.

Conclusion

Mapping the nerves, understanding what each does, and building new tools to manipulate them will take time, but the promise of the "electroceutical revolution" is immense and major pharmaceutical companies like Glaxo-Smith Kline are investing heavily in an electroceutical future.

The downside right now for fibromyalgia and chronic fatigue syndrome (ME/CFS) is that SPARC is mostly interested in learning how to manipulate organ functioning and no organs have been specifically tied to either disease. Vagus nerve problems, however, have been tied to both, leaving vagus nerve stimulation a possible future therapy. With that and all the nerve issues popping up in fibromyalgia, it's hard to believe that SPARC won't turn up something that won't apply to both diseases over time.

 

[Learner]

These all sound very promising. There are also Rife machines and Deep Brain Stimulation for Parkinson's.

But, how do all of these interrelate to EMFs being something that creates Cell Danger Response in Naviaux's world? And grounding, shielding from EMFs, etc.?

My sense is there are answers out there, but there are some risks and gotchas along the way along with some miracles...and that we're 10-15 years from a good understanding.

I've had some recent experience with cranial sacral work, neural therapy and injection therapies which made dramatic and immediate changes in my functioning and pain levels. And I know people who have had good results with acupuncture and biofeedback.

Waiting for a "grand theory of everything" which would make pulling the appropriate "electrical"tools out of the toolbox at the right times to solve problems, rather than this frustrating stabbing in the dark with various modalities....but of course, we need to do what we can to survive until the perfect answers shake out....

 

[Cort]

These all sound very promising. There are also Rife machines and Deep Brain Stimulation for Parkinson's.

But, how do all of these interrelate to EMFs being something that creates Cell Danger Response in Naviaux's world? And grounding, shielding from EMFs, etc.?

My sense is there are answers out there, but there are some risks and gotchas along the way along with some miracles...and that we're 10-15 years from a good understanding.

I've had some recent experience with cranial sacral work, neural therapy and injection therapies which made dramatic and immediate changes in my functioning and pain levels. And I know people who have had good results with acupuncture and biofeedback.

Waiting for a "grand theory of everything" which would make pulling the appropriate "electrical"tools out of the toolbox at the right times to solve problems, rather than this frustrating stabbing in the dark with various modalities....but of course, we need to do what we can to survive until the perfect answers shake out....

Glad to hear you've found some help. Do you have any experience with Dr. Perrin's techniques? I wonder if they are similar to what you've done?

 

[Learner]

I'm assuming you mean Perrin's lymphatic drainage technique for removing toxins? I haven't specifically done it, but am familiar with like techniques.

It's a long story, but I am toxic all the way deep into mitochondria, due to crappy methylation genes (I have Rich VanK's methylation block setup and labs to go with it), and I have mild lymphedema in my leg and foot due to my cancer surgery.

I've been steadily detoxing over the past 5 years, in layers, working with a top naturopath. We're getting toxins out of my mitochondria and have opened all my detox pathways to escort them out of my body, which has been a struggle, stressing kidneys and liver. I can't sauna and sweat as it flares the lymphedema.

I was fortunate to go early on to a retreat done by Northwest Lymphedema Center, where I learned manual lymph drainage (self massage). It helped some - the general concept was to mobilize lymph near the neck and chest, then work down the body, a section at a time to the extremities, working the lymph toward the neck, where it supposedly dumps into the system that flushes out of the body. Amazingly, the cancer folks aren't clues into mobilizing toxins, they are focused on the hydraulic problem.

I found it somewhat helpful. Then I was sent an ND who was an expert at "strain-counterstrain", which focused on sliding the fascia over the muscles related to specific trigger points to move lymph through the body. It was much more effective, but the effect didn't last more than a day.

Then, I had the good fortune to be in a significant car accident. My physiatrist, a DO, sent me off to 12 sessions of cranial sacral therapy.

I'd think it's BS if I just read about it, but as I lay there quietly, the therapist slowly worked her hands up my spine from my tailbone up to my skull. The theory seemed to be to move the spinal fluid and encourage bound up fascia to release. OK, OK, I thought. Am I wasting my time, it just finding another place to have a nap in a dimly lit room? And just when I was thinking how silly it was, I'd have some profound twitch, and by the next day, an area that had been consistently painful or tight was much better. For good...

He also sent me to a massage therapist who turned out to be "the lymph whisperer." She practiced the Chikly method, which was far superior to the MLD and strain-counterstrain as the effects lasted, and it made the lymphedema diminish by 70%.

She would make the lightest stroking motions around and below my collarbone, and she was able to see and feel my lymph moving. She used some of the same locations on my torso to continue encouraging the lymph to move upwards, finishing with my legs.

After both the strain-counterstrain and the Chikly technique, I'd need to empty my bladder which seemed to fill up more than usual during the treatment, likely as my body got rid of the toxin filled lymph.

Someone on PR was discussing encouraging the lymph upward could push it into the brain and cause inflammation and brain fog.Though I was told by the various practitioners if you can get it into the collarbone area, it will head downward to the kidneys, but I wonder. I had sneaky noises at the base of my skull as the fluid moved, and swelling beglhnd my ears with lulymph that had to be coaxed downward.

Having quizzed doctors, therapists, and experienced patient's who advocate nationally, I was struck by how little research exists - it seems to be in the realm of PTs and nurses, not doctors who publish research. And though I asked about toxins, detoxing, etc. no one knew, which felt odd, as these therapies are aimed at cancer patients who are likely all toxic.

The other part of my car accident rehab was an injection therapy called prolozone. Developed by MD Frank Schallenberger, it involves injecting lidocaine, nutrients like Bs and amino, and ozone into injured areas around nerves. I had it done on my neck, back, shoulder, and a very panful spasming part of my in nervy high that had vexed me for 6 weeks. Amazingly, each time of the3 sessions made a dramatic difference in pain and function by the next day. It was one of those "Why didn't I do this sooner?" moments each time...

I've also tried Muscle testing, Rife machine, and Frequency modulation. All hyped well, but I couldn't tell it helped. Tried acupuncture, too, which bin think helped somewhat.

My humble conclusion? There steps lot of modalities. Matching up what problem us being solved with what the mechanism is important. I think there's a lot if hype. And s few facts. Best to collect anecdotes beforw all the data comes in, and make judicious personalized decisions. It wait 10 years...

I'm crashing right now's so I hope this is useful and I answered thecrught questionBC diy

 

[Cort]

I'm assuming you mean Perrin's lymphatic drainage technique for removing toxins? I haven't specifically done it, but am familiar with like techniques.

It's a long story, but I am toxic all the way deep into mitochondria, due to crappy methylation genes (I have Rich VanK's methylation block setup and labs to go with it), and I have mild lymphedema in my leg and foot due to my cancer surgery.

I've been steadily detoxing over the past 5 years, in layers, working with a top naturopath. We're getting toxins out of my mitochondria and have opened all my detox pathways to escort them out of my body, which has been a struggle, stressing kidneys and liver. I can't sauna and sweat as it flares the lymphedema.

I was fortunate to go early on to a retreat done by Northwest Lymphedema Center, where I learned manual lymph drainage (self massage). It helped some - the general concept was to mobilize lymph near the neck and chest, then work down the body, a section at a time to the extremities, working the lymph toward the neck, where it supposedly dumps into the system that flushes out of the body. Amazingly, the cancer folks aren't clues into mobilizing toxins, they are focused on the hydraulic problem.

I found it somewhat helpful. Then I was sent an ND who was an expert at "strain-counterstrain", which focused on sliding the fascia over the muscles related to specific trigger points to move lymph through the body. It was much more effective, but the effect didn't last more than a day.

Then, I had the good fortune to be in a significant car accident. My physiatrist, a DO, sent me off to 12 sessions of cranial sacral therapy.

I'd think it's BS if I just read about it, but as I lay there quietly, the therapist slowly worked her hands up my spine from my tailbone up to my skull. The theory seemed to be to move the spinal fluid and encourage bound up fascia to release. OK, OK, I thought. Am I wasting my time, it just finding another place to have a nap in a dimly lit room? And just when I was thinking how silly it was, I'd have some profound twitch, and by the next day, an area that had been consistently painful or tight was much better. For good...

He also sent me to a massage therapist who turned out to be "the lymph whisperer." She practiced the Chikly method, which was far superior to the MLD and strain-counterstrain as the effects lasted, and it made the lymphedema diminish by 70%.

She would make the lightest stroking motions around and below my collarbone, and she was able to see and feel my lymph moving. She used some of the same locations on my torso to continue encouraging the lymph to move upwards, finishing with my legs.

After both the strain-counterstrain and the Chikly technique, I'd need to empty my bladder which seemed to fill up more than usual during the treatment, likely as my body got rid of the toxin filled lymph.

Someone on PR was discussing encouraging the lymph upward could push it into the brain and cause inflammation and brain fog.Though I was told by the various practitioners if you can get it into the collarbone area, it will head downward to the kidneys, but I wonder. I had sneaky noises at the base of my skull as the fluid moved, and swelling beglhnd my ears with lulymph that had to be coaxed downward.

Having quizzed doctors, therapists, and experienced patient's who advocate nationally, I was struck by how little research exists - it seems to be in the realm of PTs and nurses, not doctors who publish research. And though I asked about toxins, detoxing, etc. no one knew, which felt odd, as these therapies are aimed at cancer patients who are likely all toxic.

The other part of my car accident rehab was an injection therapy called prolozone. Developed by MD Frank Schallenberger, it involves injecting lidocaine, nutrients like Bs and amino, and ozone into injured areas around nerves. I had it done on my neck, back, shoulder, and a very panful spasming part of my in nervy high that had vexed me for 6 weeks. Amazingly, each time of the3 sessions made a dramatic difference in pain and function by the next day. It was one of those "Why didn't I do this sooner?" moments each time...

I've also tried Muscle testing, Rife machine, and Frequency modulation. All hyped well, but I couldn't tell it helped. Tried acupuncture, too, which bin think helped somewhat.

My humble conclusion? There steps lot of modalities. Matching up what problem us being solved with what the mechanism is important. I think there's a lot if hype. And s few facts. Best to collect anecdotes beforw all the data comes in, and make judicious personalized decisions. It wait 10 years...

I'm crashing right now's so I hope this is useful and I answered thecrught questionBC diy

Thanks!

This - The other part of my car accident rehab was an injection therapy called prolozone. Developed by MD Frank Schallenberger, it involves injecting lidocaine, nutrients like Bs and amino, and ozone into injured areas around nerves. I had it done on my neck, back, shoulder, and a very panful spasming part of my in nervy high that had vexed me for 6 weeks. Amazingly, each time of the3 sessions made a dramatic difference in pain and function by the next day. It was one of those "Why didn't I do this sooner?" moments each time...

Sounds like prolotherapy ? Mike Dessin really liked prolotherapy

 

[Learner]

Both are good, but prolozone is better. I've had both done, and would do either again sooner.

Prolotherapy uses dextrose (mostly) to create localized irritation to promote muscle growth. The needle is guided with fluoroscopy or ultrasound. It generally takes 2-6 sessions to work.

I'm allergic to dextrose, so the doctor used testosterone, making 9 injections down each side of my neck after numbing with lidocaine. It hurt for a couple of days, then gradually got better. Using ice or anti-inflammatories is out as inflammation is the desired goal. It took 3 treatments, 1 month apart, and my neck felt like new. It was "Why didn't I do that sooner?"

With the 2nd car accident, I actually wanted prolotherapy again, but the new doctor refused to consider anything other than dextrose. In researching what could be injected, I learned about prolozone.

It's similar, but since the ozone infuses the tissue, it doesn't have to be as precise, and the nutrients speed the healing process. And he not only injected near my spine, but also did trigger points of muscles that were tight and pulling and causing pain. There was a little discomfort that night, but the days after were great, without the pain I had with the prolotherapy.

Most conventional doctors don't know about these and my physical therapists knew very little about them. They are both great modalities for the right problem.

 

[Wayne]

I've only perused the information in this thread for now, but just revisited an open window of mine (been open for a LONG time) that seems to be connected to this thread. Here's a link:

Scientists are trying to create an 'off switch' for disease -- and it could completely transform medicine

Here's some introductory paragraphs...

Imagine a world where we treated deadly diseases with electricity instead of pills or chemo. We might not be as far from this reality as you think.

Normally, our nervous systems send signals to our tissues and organs to suppress inflammation, a phenomenon known as the inflammatory reflex. But sometimes, this system gets out of whack, and can even result in diseases like rheumatoid arthritis and inflammatory bowel disease.......

Now, some researchers have found a way to deliver electrical stimulation to just the right areas to stop chronic inflammation in its tracks — a therapy they’re calling bioelectronic medicine.

 

[Eric]

I'm assuming you mean Perrin's lymphatic drainage technique for removing toxins? I haven't specifically done it, but am familiar with like techniques.

It's a long story, but I am toxic all the way deep into mitochondria, due to crappy methylation genes (I have Rich VanK's methylation block setup and labs to go with it), and I have mild lymphedema in my leg and foot due to my cancer surgery.

I've been steadily detoxing over the past 5 years, in layers, working with a top naturopath. We're getting toxins out of my mitochondria and have opened all my detox pathways to escort them out of my body, which has been a struggle, stressing kidneys and liver. I can't sauna and sweat as it flares the lymphedema.

I was fortunate to go early on to a retreat done by Northwest Lymphedema Center, where I learned manual lymph drainage (self massage). It helped some - the general concept was to mobilize lymph near the neck and chest, then work down the body, a section at a time to the extremities, working the lymph toward the neck, where it supposedly dumps into the system that flushes out of the body. Amazingly, the cancer folks aren't clues into mobilizing toxins, they are focused on the hydraulic problem.

I found it somewhat helpful. Then I was sent an ND who was an expert at "strain-counterstrain", which focused on sliding the fascia over the muscles related to specific trigger points to move lymph through the body. It was much more effective, but the effect didn't last more than a day.

Then, I had the good fortune to be in a significant car accident. My physiatrist, a DO, sent me off to 12 sessions of cranial sacral therapy.

I'd think it's BS if I just read about it, but as I lay there quietly, the therapist slowly worked her hands up my spine from my tailbone up to my skull. The theory seemed to be to move the spinal fluid and encourage bound up fascia to release. OK, OK, I thought. Am I wasting my time, it just finding another place to have a nap in a dimly lit room? And just when I was thinking how silly it was, I'd have some profound twitch, and by the next day, an area that had been consistently painful or tight was much better. For good...

He also sent me to a massage therapist who turned out to be "the lymph whisperer." She practiced the Chikly method, which was far superior to the MLD and strain-counterstrain as the effects lasted, and it made the lymphedema diminish by 70%.

She would make the lightest stroking motions around and below my collarbone, and she was able to see and feel my lymph moving. She used some of the same locations on my torso to continue encouraging the lymph to move upwards, finishing with my legs.

After both the strain-counterstrain and the Chikly technique, I'd need to empty my bladder which seemed to fill up more than usual during the treatment, likely as my body got rid of the toxin filled lymph.

Someone on PR was discussing encouraging the lymph upward could push it into the brain and cause inflammation and brain fog.Though I was told by the various practitioners if you can get it into the collarbone area, it will head downward to the kidneys, but I wonder. I had sneaky noises at the base of my skull as the fluid moved, and swelling beglhnd my ears with lulymph that had to be coaxed downward.

Having quizzed doctors, therapists, and experienced patient's who advocate nationally, I was struck by how little research exists - it seems to be in the realm of PTs and nurses, not doctors who publish research. And though I asked about toxins, detoxing, etc. no one knew, which felt odd, as these therapies are aimed at cancer patients who are likely all toxic.

The other part of my car accident rehab was an injection therapy called prolozone. Developed by MD Frank Schallenberger, it involves injecting lidocaine, nutrients like Bs and amino, and ozone into injured areas around nerves. I had it done on my neck, back, shoulder, and a very panful spasming part of my in nervy high that had vexed me for 6 weeks. Amazingly, each time of the3 sessions made a dramatic difference in pain and function by the next day. It was one of those "Why didn't I do this sooner?" moments each time...

I've also tried Muscle testing, Rife machine, and Frequency modulation. All hyped well, but I couldn't tell it helped. Tried acupuncture, too, which bin think helped somewhat.

My humble conclusion? There steps lot of modalities. Matching up what problem us being solved with what the mechanism is important. I think there's a lot if hype. And s few facts. Best to collect anecdotes beforw all the data comes in, and make judicious personalized decisions. It wait 10 years...

I'm crashing right now's so I hope this is useful and I answered thecrught questionBC diy

Where and what kind of drive. Can you go to to get this type of treatment?

 

[Learner]

Which treatment are you interested in?

 

[Eric]

Which treatment are you interested in? I'm looking to find a Dr. That will treat for the pain in my lower back due to cfs. I've done all the traditional ways but nothing seems to help. Pain is just 1 of many symptoms but pain is the worst. I keep reading about these new techniques but where can I find a Dr. that is knowledgeable or who has these treatments at their practice. Thank you for your response.
HI. I can't se

 

[Learner]

It's not your kidneys it liver is it? I've had pain in those when my body struggles to get rid of toxins, and sometimes it's hard to tell what's muscular and what's not. If it's kidney or liver, curcumin might help. Or is it intestines or appendix?

You might try neural therapy, cranial sacral therapy, or Feldenkreis if it's just random pain with no precipitating event and you're sure it's not an organ.

If it was an injury, then I'd look to prolozone or prolotherapy. Or a TENS unit.

When I look for providers, I usually Google mycityname and servicename. Then I decide if they know what they're doing or if they're charlatans, then I call and see if I feel comfortable. I got a 10 minute consultation about the polozone for no charge from a provider, which greatly helped in deciding it was right for me.

Let me know if this is sufficient. Good luck!

 

[Suella Postles]

I'm assuming you mean Perrin's lymphatic drainage technique for removing toxins? I haven't specifically done it, but am familiar with like techniques.

It's a long story, but I am toxic all the way deep into mitochondria, due to crappy methylation genes (I have Rich VanK's methylation block setup and labs to go with it), and I have mild lymphedema in my leg and foot due to my cancer surgery.

I've been steadily detoxing over the past 5 years, in layers, working with a top naturopath. We're getting toxins out of my mitochondria and have opened all my detox pathways to escort them out of my body, which has been a struggle, stressing kidneys and liver. I can't sauna and sweat as it flares the lymphedema.

I was fortunate to go early on to a retreat done by Northwest Lymphedema Center, where I learned manual lymph drainage (self massage). It helped some - the general concept was to mobilize lymph near the neck and chest, then work down the body, a section at a time to the extremities, working the lymph toward the neck, where it supposedly dumps into the system that flushes out of the body. Amazingly, the cancer folks aren't clues into mobilizing toxins, they are focused on the hydraulic problem.

I found it somewhat helpful. Then I was sent an ND who was an expert at "strain-counterstrain", which focused on sliding the fascia over the muscles related to specific trigger points to move lymph through the body. It was much more effective, but the effect didn't last more than a day.

Then, I had the good fortune to be in a significant car accident. My physiatrist, a DO, sent me off to 12 sessions of cranial sacral therapy.

I'd think it's BS if I just read about it, but as I lay there quietly, the therapist slowly worked her hands up my spine from my tailbone up to my skull. The theory seemed to be to move the spinal fluid and encourage bound up fascia to release. OK, OK, I thought. Am I wasting my time, it just finding another place to have a nap in a dimly lit room? And just when I was thinking how silly it was, I'd have some profound twitch, and by the next day, an area that had been consistently painful or tight was much better. For good...

He also sent me to a massage therapist who turned out to be "the lymph whisperer." She practiced the Chikly method, which was far superior to the MLD and strain-counterstrain as the effects lasted, and it made the lymphedema diminish by 70%.

She would make the lightest stroking motions around and below my collarbone, and she was able to see and feel my lymph moving. She used some of the same locations on my torso to continue encouraging the lymph to move upwards, finishing with my legs.

After both the strain-counterstrain and the Chikly technique, I'd need to empty my bladder which seemed to fill up more than usual during the treatment, likely as my body got rid of the toxin filled lymph.

Someone on PR was discussing encouraging the lymph upward could push it into the brain and cause inflammation and brain fog.Though I was told by the various practitioners if you can get it into the collarbone area, it will head downward to the kidneys, but I wonder. I had sneaky noises at the base of my skull as the fluid moved, and swelling beglhnd my ears with lulymph that had to be coaxed downward.

Having quizzed doctors, therapists, and experienced patient's who advocate nationally, I was struck by how little research exists - it seems to be in the realm of PTs and nurses, not doctors who publish research. And though I asked about toxins, detoxing, etc. no one knew, which felt odd, as these therapies are aimed at cancer patients who are likely all toxic.

The other part of my car accident rehab was an injection therapy called prolozone. Developed by MD Frank Schallenberger, it involves injecting lidocaine, nutrients like Bs and amino, and ozone into injured areas around nerves. I had it done on my neck, back, shoulder, and a very panful spasming part of my in nervy high that had vexed me for 6 weeks. Amazingly, each time of the3 sessions made a dramatic difference in pain and function by the next day. It was one of those "Why didn't I do this sooner?" moments each time...

I've also tried Muscle testing, Rife machine, and Frequency modulation. All hyped well, but I couldn't tell it helped. Tried acupuncture, too, which bin think helped somewhat.

My humble conclusion? There steps lot of modalities. Matching up what problem us being solved with what the mechanism is important. I think there's a lot if hype. And s few facts. Best to collect anecdotes beforw all the data comes in, and make judicious personalized decisions. It wait 10 years...

I'm crashing right now's so I hope this is useful and I answered thecrught questionBC diy

Dr. Raymond Perrin has done an enormous amount of research work to get his doctorate and is a professor at two Manchester UK University. His work up to 2020 is presented in the second edition of his book The Perrin Technique. His next book Through the Looking Glass will be released in November. I'm undergoing it as I write and am now "peeling the onion" of 21 years of varied ME stages which Long Covid has complicated. As this is a technique which we can do ourselves, supporting spaced out Perrin practitioner visits, It suits my self-help ethos perfectly.