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What an interesting tale Matthew’s long COVID/ ME/CFS recovery story is. It is interesting because it’s a blend of old and new: the old – Matthew benefitted greatly from a POTS diagnosis and treatment regimen at the Bateman Horne Center – and then finally recovered using a “new” treatment – hyperbaric oxygen therapy. He wrote about his experience in “The Long Haul: My Four-Year Battle to Beat Long COVID, ME/CFS, and POTS“.
Matthew was not a novice to rare or unusual diseases. He was diagnosed with hyperparathyroidism – which affects 0.3% of males – at the age of 19. Then at the age of 44, after almost choking to death, he was diagnosed with a severe case of achalasia. It was long COVID / chronic fatigue syndrome (ME/CFS) / POTS which nearly killed him, though.
Matthew’s story of his struggle to find knowledgeable doctors and get help is familiar but comes with a twist. While Matthew did get “full” workups from 3 hospitals – which turned out to be pointless – and did see 20 doctors – who got his diagnosis wrong – he was able, through the internet, to properly diagnose himself and find his way to knowledgeable doctors within 2 years.
Matthew first became ill in 2020, and I imagine things are better now. After MEAction’s work at the Mayo Clinic, I would hope that if Matthew hit the Mayo Clinic today, he would be quickly diagnosed. Since Matthew became ill, two large ME/CFS/FM/POTS/long-COVID centers have opened up: Metrodora, and David Putrino’s $10 million Cohen Center for Recovery From Complex Chronic Illnesses. Plus, the RECOVER Initiative has produced 15 long-COVID clinics. Progress is being made.
THE GIST
- Mathew’s long COVID/ ME/CFS recovery story is. It is interesting because it’s a blend of old and new: the old – Matthew benefitted greatly from a POTS diagnosis and treatment regimen at the Bateman Horne Center – and then finally recovered using a “new” treatment – hyperbaric oxygen therapy.
- Mathew’s long COVID story started in Feb 2020 at a concert in North Carolina. The dizziness that would become a hallmark of his illness and plague him began about 2 weeks into his COVID-19 experience. His other major symptoms were brain fog, post-exertional malaise, and fatigue. During the day, he typically spent 6-12 hours in bed.
- Matthew characterized his experience with the medical profession as “deeply perplexing, troubling, gut-wrenching, agonizing, frustrating, and frankly unacceptable”. While Matthew did get “full” workups from 3 hospitals – which turned out to be pointless – and did see 20 doctors – who got his diagnosis wrong – he was able, through the internet, to properly diagnose himself and find his way to knowledgeable doctors at the Bateman Horne Center within 2 years.
- Midodrine improved his symptoms by about 25% over several months. Adding in Abilify, low-dose naltrexone, and Paxlovid helped significantly. Matthew felt his symptoms improved by about 5% a month, every month for two years, and was about 80% better when in November 2023 – without warning – he experienced a major relapse that left him spending 20 hours a day at times in bed.
- Mathew turned to the Aviv Clinic in Florida where he engaged in an intense 3-month hyperbaric oxygen therapy protocol that utilized extensive testing, and a personalized treatment regimen that included exercise and brain training.
- It took Matthew two weeks before he experienced a “zero symptom” moment. That ultimately progressed into a zero-symptom day and a zero-symptom week. He said he entered the 3-month program feeling like he was nearly dead and left it feeling fully alive again. Three weeks later tests confirmed that blood flows to the brain, his exercise capacity, cognitive abilities, etc. had improved. Seven months later he was still well.
- Several studies and case reports suggest that HBOT therapy can produce at least temporary improvements in long COVID, fibromyalgia, and ME/CFS and one study suggests the results may be permanent.
- A systematic review reported that HBOT showed “some benefits for long COVID symptoms” and a meta-analysis of 4 FM randomized-controlled HBOT fibromyalgia trials concluded that “prolonged treatment sessions may help with pain relief”. Several long COVID and ME/CFS HBOT studies -some quite large – are underway.
- Mathew reported that he felt that everybody with long COVID that he met at least improved, some had dramatic improvements, and some, like him, recovered completely.
- Few of us have the means to duplicate Matthews’s HBOT program, but Matthew’s story points to something important and hopeful – and that’s the role that increased oxygen levels at the tissue level may play. The implications of increasing oxygen levels include the possibility that finding ways to improve blood flows (possibly by reducing sympathetic nervous system activity), removing blood clots, increasing oxygen levels, enhancing mitochondrial activity, and reducing inflammation can be quite helpful.
- Given HBOTs expense and the long time component one wonders if the process could be sped up. Could anticoagulants, mitochondrial supplements, blood volume enhancers, or immune modulators done in conjunction with HBOT help?
- We should learn much more about HBOT, long COVID, and ME/CFS over the next couple of years.
Matthew’s Story
At the time Matthew got ill, he seemed to be living the dream. A successful professional at the top of his field, he had a good family, many friends, and was financially secure. A well-known criminologist, university professor, (and part-time brewologist), Matthew authored 25 books over time.
Fixing his achalasia required three surgeries but left him, once recovered, with a burning desire to start living, and that meant traveling the world – and so he did, ultimately visiting all 7 continents.
His long COVID story started in Feb 2020 at a concert in North Carolina – putting him among the first people in North Carolina to come down with COVID-19, and ultimately long COVID, ME/CFS, and POTS.
Mathew’s strange 24-hour dizziness was one of his most discomforting symptoms.
The dizziness that would become a hallmark of his illness and plague him for the next 4 years began about 2 weeks into his COVID-19 experience. His other major symptoms were brain fog, post-exertional malaise, and fatigue.
During the day, he typically spent 6-12 hours in bed. When PEM really hit, he was unable to do simple things like cooking, cleaning, or walking the dog. Nothing had prepared him for the level of debility he was experiencing, and at one point he began to think about suicide.
His journey through the medical profession didn’t help. While he recognized that long COVID was new to medicine, he nevertheless characterized his experience with the medical profession as “deeply perplexing, troubling, gut-wrenching, agonizing, frustrating, and frankly unacceptable”.
Besides being told that he would have to wait for the science to catch up, he was given multiple faulty diagnoses including benign paroxysmal positional vertigo, persistent postural-perceptual dizziness, vestibular hypofunction, Mal de Debarquement syndrome, and brain tumor – none of which fit his particular symptoms.
For instance, while Mal de Debarquement syndrome can produce symptoms that feel like you are on a boat, it does not produce cognitive problems nor the 24-hour dizziness, does not make one sweat more, and is not worsened by cognitive or physical exertion, etc. It generally took Mathtew a few minutes on the internet to understand that none of his diagnoses fit him.
As his doctors muffed diagnosis after diagnosis, and more and more tests were unrevealing, he grew more and more desperate to have something – anything – show up. Instead of being delighted by an MRI which did not find a brain tumor, the result nearly brought him to tears.
By the time he was finally diagnosed with post-viral syndrome by a neurologist, he was already $6,000 out of pocket.
Not knowing what ME/CFS or POTS was, Mathew’s doctors kept providing wrong diagnoses.
As so many people have, Matthew, based on his online searches, first diagnosed himself with ME/CFS and/or POTS, and then headed to the Bateman Horne Center in Salt Lake City, where the NASA Lean test and the clinical examination confirmed the diagnosis.
Midodrine improved his symptoms by about 25% over several months. Adding in Abilify, low-dose naltrexone, and Paxlovid helped significantly. Matthew felt his symptoms improved by about 5% a month, every month, for two years.
Dr. Bateman told Matthew she thought he would eventually fully recover, as in her experience, long-COVID patients did better than ME/CFS patients. Matthew got to the point where he was able to go on less strenuous hikes, do home workouts (pushups, pullups, situps), and travel a bit. The travel was exhausting, but it was doable.
Matthew was looking into new treatment options when in November 2023 – without warning – he experienced a major relapse that left him spending 20 hours a day at times in bed. Perhaps the most disturbing thing about the relapse was that he could not find any reason for it – it just happened – and he was back in the soup.
After a great deal of back and forth, questioning and hemming and hawing, Matthew decided to go for a “hail Mary” – a 3-month course of a new and mostly unproven treatment – a course of hyperbaric oxygen therapy at the Aviv Clinic in Florida that would set him back tens of thousands of dollars.
It turned out to be a very good decision.
Matthew’s Aviv HBOT Experience
Aviv’s “Dive Tank”
At this point, Matthew would probably be considered to have a mild to moderate case of ME/CFS. He was still teaching and was well enough to travel, but was largely sedentary.
Three straight days of testing, including MRI and SPECT brain scans, started his stay. (Dr. Hadanny said that if the initial brain scan does not show problems AVIV may not accept the patient because they don’t think the protocol will help.) During a cognitive test when asked to name as many words that start with F as he could, this university professor could only come up with six.
Hyperbaric Oxygen Therapy
Breathing pure oxygen through a mask will not do it. Dr. Amir Hadanny in Jackle Baxter’s “The Long COVID Podcast” first explained that it’s all because of Henry’s Law which states that more oxygen can be delivered into the tissues at higher pressure. Dr. Hadanny began examining HBOT in traumatic brain injury patients in 2008 and now leads Aviv Clinic’s hyperbaric oxygen therapy program.
Aviv states that the hyperbaric oxygen protocol increases oxygen levels in the body 10-15-fold (!). The participants alternate breathing pure oxygen with oxygen breaks, during which they take in normal oxygen levels – a process Aviv states helps the tissue rejuvenate.
The process Aviv uses tricks the brain into thinking its suffocating – it’s not.
The process seems very hormetic. In the “hyperoxic-hypoxic paradox (HHP)”, when the participants remove their masks after breathing a high-oxygen mixture, the sudden drop in oxygen fools their brains into thinking they’re suffocating.
The brain is not actually experiencing a hypoxic or dangerously low oxygen state – it simply thinks it is – and so goes into repair mode, producing some nice new factors: blood vessels, stem cells, and oxygen (energy). This same set of factors – increasing blood vessels, activating stem cells, and providing oxygen – is what HBOT does.
Hadanny stated that wounds in the brain – parts of the brain that are metabolically impaired in long COVID – are similar to wounds in the body. While many hypotheses have been put forth to explain those wounds the end result is the same – metabolically dysfunctional or low-energy areas of the brain.
HBOT has the potential to enhance oxygen delivery to the tissues, improve mitochondrial functioning, help repair tissues, clear out blood clots, and reduce inflammation. On paper, it sounds great!
The AVIV Protocol
Aviv states its HBOT protocols activate stem cells which then repair tissues.
Aviv incorporates both exercise and brain training into its protocol. While both seem daunting to an ME/CFS/long-COVID patient, the idea seems to be that as the body gets more oxygenated, the mental and physical exercise helps integrate the oxygen more and more into the tissues and rebuild them.
On its website, Aviv states it treats the following conditions: reversing the biology of aging, post-concussion syndrome, long COVID, fibromyalgia, post-stroke recovery, Lyme Disease, post-traumatic stress disorder, athletic performance, and carbon monoxide poisoning. Its long COVID page includes several recovery stories.
Dr. Hannardy reported that the 40 days of HBOT therapy Aviv uses for other conditions turned out not to be enough for people with longer duration (>6 months) long COVID. Sixty days are needed to grow the new blood vessels and neurons that produce long-term healing.
Besides doing 2 hours of HBOT a day (4 x 20-minute sessions, breathing 100% oxygen) for 60 days, Matthew’s team at Aviv came up with an exercise plan that included doing 10,000 steps a day, lifting light weights, elevated heart work (123-138 beats/minute 4 x a week in zone 3 – moderate exercise) which involved slow jogging, and hiking once or twice a week.
Matthew was willing to try walking, but when he learned the only way to could get his heart rate up enough to get into Zone 3 training was by jogging, he balked. While Dr. Bateman had warned him about becoming deconditioned and had him doing pushups, pullups, and situps, jogging – even slow jogging – was something else.
It was explained that the only way to get the stem cells into his brain was to get his heart rate up enough – and for him, that meant slow jogging. Matthew signed on and between his HBOT sessions, he did his slow jogging. At first, the jogging was as slow, messy, and painful as he’d anticipated, but it got easier as the HBOT therapy continued.
He also spent 45 minutes a day performing a variety of mental exercises using the BrainHQ computer program while in the hyperbaric chamber.
Results
Three months later, Matthew reported he was symptom-free and jogging. Seven months later, he remained recovered.
It took Matthew two weeks before he experienced a “zero symptom” moment. That ultimately progressed into a zero-symptom day and a zero-symptom week. He said he entered the 3-month program feeling like he was nearly dead and left it feeling fully alive again.
Three weeks after the treatment ended, he returned for a post-treatment assessment. He was told that his cholesterol and triglycerides fell, his testosterone increased, he gained 5 lbs of muscle, lost 11 lbs of fat, his VO2 max increased by 18%, his anaerobic threshold increased by 38%, blood flows to different parts of his brain increased from 5-10%, and his cognitive performance in many areas increased significantly. He considered himself completely cured.
By the time his book was published in June, he had completed 4 5Ks. When I recently communicated with him Matthew, he said he’d maintained his recovery 7 months later.
Hyperbaric Oxygen Therapy (HBOT) Studies
One review points out that HBOT appears to be targeting some pretty heavy-duty processes believed to be in play in long COVID, ME/CFS, and fibromyalgia. They include “ameliorating and reversing microvascular pathologies such as endothelial dysfunction, microvascular rarefaction, improved blood-brain-barrier features, mitochondrial function, cellular metabolism, inflammation, and oxidative stress”.
Indeed, several studies and case reports have made it clear that HBOT therapy can produce at least temporary improvements in long COVID, fibromyalgia, and ME/CFS. A systematic review of 10, mostly small, long-COVID HBOT case reports/studies reported that HBOT has shown “some benefits for long COVID symptoms” but that more rigorous, large-scale trials are needed. An Israeli study found improvement in brain perfusion and microstructural changes in multiple areas of the brain. The researchers reported that “HBOT can induce neuroplasticity and improve cognitive, psychiatric, fatigue, sleep and pain symptoms of patients suffering from post-COVID-19 condition”.
A meta-analysis of 4 FM randomized-controlled HBOT fibromyalgia trials concluded “prolonged treatment sessions may help with pain relief” and called – not surprisingly – for larger randomized, controlled trials with larger follow-up times.
A 2015 Israeli HBOT FM study employing a now familiar protocol (40 daily sessions, 5 days/week, 90 minutes each, 100% oxygen with air breaks at 2.0 ATA) found that HBOT improved brain activity where it was most needed: that is, it improved frontal cortex activity (seat of executive functioning) and decreased activity of the formerly hyperactive brain regions that amplify pain.
Depending on who you are you might get some, moderate or really good improvement
A big question has been whether the improvements will last once the treatment is stopped. Few people have the means, of course, to periodically return to get HBOT therapy. HBOT’s ability to achieve long-term improvement – such as Matthew experienced – was borne out by a recent Israeli study published in Nature. (Dr. Hadanny referred to this study as an Aviv study but it was done at the Shamir Medical Center in Israel and did not appear to include the exercise and brain retraining aspects.)
The Israeli study followed 31 long-COVID patients who underwent a similar protocol – 40 daily sessions. (Hadanny now asserts that 60 sessions are needed for long COVID).
A year later, the patient’s sleep, pain severity, and pain interference remained moderately – or in the case of pain interference – largely improved. Neuropsychiatric symptoms (somatization, depression, and anxiety) were moderately impacted as well.
This seemed to fit with Mathew’s subjective assessment. He reported that he felt that everybody with long COVID that he met at least improved, some had dramatic improvements, and some, like him, recovered completely. Outside of long COVID, he also saw some miraculous recoveries – a stroke victim who was able to walk again, and a person with debilitating nerve pain who ended up being pain-free.
Interestingly, physical functioning, as measured by the physical functioning domain of the SF-36 questionnaire, was not significantly improved. This part of the SF-36 questionnaire asks how much one’s health impacts one’s ability to do things like walking, climbing stairs, etc.
These kinds of heterogeneous results are, of course, the norm, not just for ME/CFS, FM, and long COVID but for many diseases. A look at Health Rising’s Recovery Stories indicates that when given to the right person, all sorts of treatments – antivirals, vaccines, neuroplasticity programs, diets, Ampligen, nicotine patch, IVIG, spinal surgeries, Rapamycin etc. – can result in cures. The big question is how often they do so, and for whom.
With at least four studies underway, some of them quite large (n=200; n=120, n=120, n=60 (Carmen Scheibenbogen), we’ll undoubtedly learn more about the effectiveness of HBOT therapy for long COVID and ME/CFS over the next couple of years.
Conclusion
Few of us have the means to duplicate Matthew’s HBOT program, but Matthew’s story points to something important and hopeful – and that’s the role that increased oxygen levels at the tissue level may play. Until insurance will pay for HBOT therapy – if it ever will – HBOT may be more important for what it’s pointing to than as a treatment possibility for most of us.
The implications of increasing oxygen levels include the possibility that improving blood flows (possibly by reducing sympathetic nervous system activity), removing blood clots, increasing oxygen levels, enhancing mitochondrial activity, and reducing inflammation can be quite helpful.
A recent study, for instance, suggests that using inspiratory muscle training – which can increase oxygen levels – can be helpful.
Given HBOT’s expense and the long time component,. one wonders if the process could be sped up. Could anticoagulants, mitochondrial supplements, blood volume enhancers, or immune modulators done in conjunction with HBOT help with that? If you’re going to spend probably tens of thousands of dollars on an Aviv stay, why not throw in $1,500 worth of oxaloacetate? One would hope clinics like AVIV will eventually provide comprehensive treatment protocols focused on each condition.
We will need bigger and better studies, but if long-duration HBOT protocols can be counted on to provide permanent and moderate or better relief, they have to be taken seriously.
Health Rising is not affiliated in any way with the Aviv Clinics
Health Rising’s End of the Year (Beginning of the New Year) Donation Drive
Matthew’s HBOT experience was a great success which Health Rising fleshed out with study information to get a more complete picture
Thanks to the hundreds of people who have supported Health Rising to the tune of about $50,000 thus far 🙂
Complete and comprehensive – that’s what we aim for at Health Rising. Matthew’s recovery story is a case in point. It was the starting point of a journey into hyperbaric oxygen therapy, not the ending point. We wanted to know how HBOT showed up in studies as well. That’s how we try to get as complete a picture as possible.
If that’s what you like to see, please support us and keep the information flowing.
I rented a chamber and used it daily for ages. Unfortunately it didn’t help my CFS. Possibly gave some headache relief but hard to tell.
Hi Bradley – did you combine it with 100% oxygen?
Yeah. It was the full setup. There was a nasal cannula you attached whilst in the chamber that fed me oxygen.
Good for you for trying! 🙂
Have you tried any brain retraining. I have recovered. It took 14 months of brain retraining and mind body practices.
Hi Brenda, I had been doing brain retraining for about 4 months and just stopped a month ago. Can you tell me which program you’ve been using. Thank you!
I did 1/2 of Ans Rewire and then changed to Re-Origin. I highly recommend this program. It includes brain rewiring, somatic practiced, educational video regarding the nervous system states, visualizations. One of the coaches specializes in somatic and another in leading visualizations. Also a very supportive community.
Applause!! I have definitely found that ways of increasing oxygen to my muscle tissue through specific breathwork and also the Alexander Technique have improved my function dramatically (along with a variety of other alternative modalities). I also use the Oura ring to carefully monitor my steps, sleep, heart rate, HRV. Between all of these elements, I am steadily improving. Thanks Cort for all your ongoing work! I wouldn’t have come this far without you and Health Rising. God bless you and Happy New Year. And to all the others out there struggling with these awful afflictions, keep trying.
Oxygen! 🙂 Can I ask what breathwork you are doing? Health Rising is going to do a blog on breathwork.
Hi Cort:
Yes, I have been following the breathwork protocol recommended by David Deppeler at Breathe Your Truth. He provides his clients access to a machine that hooks up to your nose and measures CO2 outputs. Connected to your computer, you can see your outputs graphically and find the optimal number (35) by controlling your inhale and exhale. He has a number of other strategies delivered via video. The techniques he emphasizes are based on the evidence that we are “overbreathing”. If we carefully follow our breathwork to slow the exhale, increase CO2 in the blood, we can recalibrate our oxygen and co2 levels thereby increasing the amount of oxygen actually delivered to our muscles.
After 23 years of increasing fatigue to the point of total exhaustion 2 years ago, I have been implementing his approach for the last 2 years and have experienced noticeable recovery that continues.
The Alexander Technique has also assisted as well through developing new neural pathways so that my muscles are no longer firing all the time. The technique develops a way for the muscles to rest which has been hard to find.
I am not fully recovered. However, I do feel that new neural pathways are operating and brain fog is much reduced. I would pin the breathwork as a lynchpin for my recovery because it required very little muscle exertion to implement and I could see progress though tiny little steps everyday.
It has required a lot of discipline to keep implementing the breathwork patterns. However, very little cost. Also, as soon as my symptoms start flaring I just have to go back to the breathwork for improvements.
I am now able to walk about 10-12,000 steps a day without PEM. (15,000 or one hour of walking in a row definitely still triggers symptoms.). I am able to follow a recipe, in fact I am making two recipes for New Years Eve Dinner. And, I was able to take five strenuous travel trips this year. I do have to be VERY careful with pace and breathwork and sleep patterns. So, this is not waving a magic wand, nor am I “normal”. However, with discipline and little tiny steps every day, I am so much happier, more able to be productive in the world. And, as I mentioned, I found my way to David’s work due to your articles emphasizing the oxygen-muscle delivery issue. from being a former high level athlete, I knew my symptoms felt like muscle depletion and that if I could just get more oxygen to them, I might feel better. David’s work seemed like just the ticket and it has helped a lot.
I have a neighbour who cured herself of Long Covid by buying a used personal HBOT machine ($5000) and using it daily for 45 minute sessions. She had a job she loved and didn’t want to take time off for being sick. She invited me to try it, said I could use it any time, but the one session I did had me screaming to be let out due to excruciating ear pain. Turns out my ears don’t handle increased air pressure very well. I have since found out that there are ear plugs to help with that, but I was scared to try it again. She sold the machine a year after she recovered, no relapses so far. We both got sick early 2020, she is fully recovered and I am not. Missed opportunity, but at the time I just assumed this illness was temporary. lol.
I think his methode is bases or almost the same as Buteyko.
https://en.wikipedia.org/wiki/Buteyko_method
It also helped me a lot.
Thanks for this link Gijs. It does sound very smiliar. And, also thanks for the info on the HBOT machine Elizabeth. Seems like this journey is so individualized. The trick seems to keep trying things as frustrating as that is…. and if something is working… keep doing it even if “science” doesn’t support it or doctors, family, friends don’t believe you. Keep going! Keep trying! Value yourself and your life. Find the support you need.
Wow Jayne, you seem to be doing really well. I’m interested in breathing and oxygen and CO2 approaches at this point, as I have been in the past and not followed through, and I’m going to look into the two you mention. Thanks for your input.
Hi Tracey:
Thanks! Yes, I am doing better than I ever expected. However, the work is constant and requires focus.
You might take a look at my response to Frank below which has a few more details. Also, feel free to respond to this thread if you have follow-up questions. I get an email that notifies me. I would love to see more folks improve based on this technique. And, it does seem a little tricky. (no silver bullet here.)
Take care and best of luck for all your work towards better health in the new year.
Hi Jayne,
glad you improved through breathwork!
I tried Buteyko breathing (low and infrequent breathing in order to increase CO2 levels) for some days and my brain fog heavily got worse. Maybe this is a normal reaction and I have to try longer? How long did you exercise before you got better?
Hi Frank: My “better” has been frustratingly slow but definitely steady and has taken the course of two years and still continues. Also, I have revised my expectations about “normal” performance.
A few things come to mind as you discuss your results:
1) Too much hypoxic breath can trigger fight or flight and increase symptoms. (not good!) So, the trick can be to figure out how much “restricted breathing”. Two things that helped me determine that…. a) access to the device called a capnotrainer. This illustrated my CO2 outputs graphically on my computer. I could see/experience “The right” amount of CO2. David Deppeler at Breathe Your Truth was my link to this type of breathing and the capno trainer. b) sticking to what is called “feather breathing” and “slow the exhale”. These are very simple methods to restrict breath and, as a result, not as likely to trigger more fight or flight. Essentially, we are creating more exhale than inhale and that will ensure more CO2 in the bloodstream. I do also mouth tape every night and am convinced that nasal breathing alone helps me. Not sure if you would find that too triggering. So, maybe approach that cautiously if inclined.
b) I track my health and vital statistics and sleep patterns very closely on the Oura Ring which help me gauge my pacing. Without it, I am not really certain what is going on with my body. (Temp, heart rate etc.). This can drive me a little crazy – think OCD. However, it has been a vital part of my journey. Right now, I am tracking my “Daily Stress” load. This tells me when the oxidative stress is happening and I can implement my breathwork and Cognitive work to try to get back to a more relaxed state.
c) You can download the app Relax Lite (for like $5) onto your phone. And, it will help you with Slow the Exhale. You can set the breath to be inhale for 4 and out for 6. It will essentially count for you. I used that every day for about 6 -12 months.
I hope this helps. You can check out David’s Breathe Your Truth website for more details. It tends to be geared toward athletes as folks like us are not big breadwinners and therefore not high net worth clients. However, David has been extremely approachable and has a lot of online streaming affordable options. I would recommend checking out his website. Maybe send him an email and see what he would recommend for you. Stay in touch and let me know if you have other questions. I get reply an email when you reply to this thread.
Wow, Jayne, thanks so much for all this great info. There are probably numerous factors that contribute to my MECFS, but somehow I don’t doubt that my breathing g practices, especially in the past when I was working very long hours, contribute. I’ve checked out David’s website and will write to him as soon as I get a chance. To start, it sounds like you do his basic program for $47 or 97? My email is traceye478@gmail.com if you want to connect with me that way. Thank you
Thanks a lot Jayne for so much info, yes probably I overdid a little bit with UNDERbreathing. I will keep on exercising at a more moderate plan!
All the best to you from Germany!
That is a lot of steps!. Thanks again for sharing 🙂
I’m glad Matthew has recovered, and I’m always grateful for you sharing these experiences, Cort. But I’m sure many, like myself, wonder what this would cost. I found this info in a CNBC article about the Aviv Clinic.
From CNBC “At Aviv, long Covid patients sign up for 40 to 60 two-hour sessions — once a day, five days a week, for eight to 12 weeks. The clinic charges $36,000 to $51,000 for those 40 to 60 sessions, including personalized care outside of chamber sessions, Elamir says: meetings with physiologists and neurologists, dietary plans, brain imaging and medical assessments.”
I’m guessing that almost all of the readers here cannot begin to afford that, not to mention the additional expenses of living in Florida for the duration of the treatment.
I know some may not be comfortable sharing financial info, but it would be helpful if more of that was shared in these recovery stories. And not just the cost, but how they afforded it, if they had a large chunk of savings, went in to debet, raising money on GoFundMe, were gifted money by a friend or relative, etc.
Otherwise, a story like this does not give me hope, but only drops me further into the despair of disabling chronic illness.
Phew! I could not find out how much the clinic cost (or I would have put it in the blog. Didn’t expect it to be that much though.) Mathew stated in his book that he was in good financial shape when long COVID hit – owned house and car outright and that money was not a concern – and it sounded like he was able to maintain his professor ship. Even then he said it was a difficult decision.
Like the blog said I think his and others experiences with HBOT probably points more to why getting more oxygen into the tissues is important and to look for other ways to do that.
Has anyone benefited from just using an oxygen machine?
Happy new year!
I need to see more evidence on hyperbaric therapy. My CFS is manageable / mild, but it’s my daughter that I really want to help. If strong evidence showed that this therapy really does consistently help, and to significant levels, then I have the means (at a stretch!) to try it for my daughter. But I need much stronger evidence to justify this.
Changing the topic – Cort, are you going to do that article on Nancy Klimas? After Nath’s study came out, she said the primary issues in ME/CFS derive from the brain. Recently, I found some really interesting research on a substance called ‘oleoylethanolamide’ (OEA). Dr Klimas’ name was against this in a study on this substance in GWI. Apparently it works on lipids, brain inflammation and immunity – all things implicated in ME/CFS!
It’s in a clinical trial for GWI.
If you were able to ask Dr Klimas’s thoughts on it it would be appreciated!
Details on the clinical trial:
https://clinicaltrial.be/en/details/32312?per_page=20&only_recruiting=0&only_eligible=0&only_active=0
Health Rising already featured PEA in an earlier blog. I take Pealut for FM from a company called Neurogan. My neuro-inflammation gets worse when I sleep. My neck and shoulders get stiff, and my nose becomes stuffy. Since taking pealut, my neuro-inflammation is reduced, and I have had no negative side effects from taking it. It also contributes to better sleep, I believe.https://www.healthrising.org/blog/2022/12/13/pea-luts-long-covid-chronic-fatigue-syndrome-fibromyalgia/
Hi Karen, OEA is a different thing to PEA
Good to hear – thanks for sharing that. I haven’t tried PEA yet.
I wonder when we can expect the results of Dr Scheibenbogens HBot trial…
Maybe that will show further evidence…?
Yes, the Klimas interview is coming up. I’m afraid its been done but thanks for the tip on ‘oleoylethanolamide’ (OEA) – I hadn’t heard of that before. 🙂
I save this on every post about hyperbaric oxygen, but I think it’s worth repeating that hyperbaric oxygen therapy needs to be approached with caution. We now understand that HBOT functions by introducing a large unnatural dose of oxygen to the bloodstream which results in an intense spike of oxidative stress. Now you would think that would be a bad thing for a population that is already suffering way too much oxidative stress for various reasons, which it very well may be for certain patients. When HBOT works it stimulates epigenetic mechanisms that turn on the bodies ability to fight oxidative stress. however, whether or not this mechanism can be activated really depends on the cellular health of the individual person. If the cells are too exhausted to activate this mechanism, then you’re basically just poisoning yourself with more oxygen. People in the mitochondrial disease community who face similar issues with oxidative stress have had mixed results. For some people it’s a miracle care and for other people it does nothing or makes them sicker. I just wanted to mention this because HBOT is generally misunderstood, including (frighteningly) often by the practitioners operating these clinics.
Thats exactly my worry… I wonder if there is any way to determine which Patients would benefit and who has to be cautious.
That is my biggest disappointment with trials and studies: I wish they would identify sub groups and potential marker for the success/failure of the studied intervention. I know that it is not easy to do and costs a lot of extra money (time)- but we are left with small interventions for a heterogenous group of patients. Many of us can not afford to get any worse. When I think of the sickest ME patients my heart breaks. I wish we would find a way to also give them some relief.
It’s a good point and the same applies to red light therapy which tries to directly enhance mitochondrial production. Ari Whitten said that a small percentage of people have a terrible time with it and I imagine that’s why.
So far, side effects have been pretty good in the long COVID and fibromyalgia studies but we are all individuals and the studies have been small. Everybody as you note, though, should be cautious. If you can handle it can produce the opposite – one study found “attenuated ROS production, lipid peroxidation, DNA damage, NO metabolites, and inflammation biomarker levels after HBOT. Still, its a bit dicey given what we know about these diseases thus far.
I’m a bit surprised now that you mention the oxidative stress connection that Aviva and other clinics don’t try to boost the antioxidant system at the same time.
Although it’s not really emphasized it seems to me that HBOT is a hormetic treatment; i.e. it works by producing a stressor which the body responds to – if it can.
We all respond to things in so many different ways. When that gets figured out that will really be something…
Hey Cort, I am also one of those people that gets horribly sick from infrared or red light therapy. I think the thing to consider here is that with Peroxisomes not functioning well, improving mitochondrial function will simply fill the cell with more ROS than it can handle, Which at a certain threshold sets off an immune response as well. I have the same effect from exposure to sunlight, which is another source of this radiation, and even from standard doses of B vitamins Possibly for the same reason. It took me a long time to figure out that I actually respond positively to very low-dose B vitamins, which are hard to find.
Wow….we are all sooo interesting. Thanks for explaining! Now people who respond poorly can have an idea why.
Dr. Paul Cheney demonstrated that 100% of his patients suffered from oxygen toxicity. This seems to be the opposite of the effects you would get from Hyperbaric Oxygen Therapy. I am puzzled.
Since most people don’t have access to this what about doing some intense breathwork, especially the types geared towards the parasympathetic nervous system (NOT Wim Hoff types), and increasing oxygen and blood flow that way? I’ve recently tried doing deep slow belly breathing just this week, like 1-2 breaths per minute, for about 15 minutes. I was thinking of working with an actual trained breathwork coach though. Want to make sure I’m doing it right.
Jason, sounds like a good idea to me. I wish I would follow through with some kind of routine. Wow, only one or two breaths per minute?
Cort, you have the best comprehensive resource on the internet for ME/CFS and related conditions. You validate our suffering and pop up in our e/mail with a clue of hope when we need it most. I consider you part of my family Cort….Happy New Year!!!
Thanks, sis! 🙂 I hope your New Year went well 🙂
I’ve been doing HBOT once a week for two years and 6 months ago, bought my own 2.0ata hard chamber. I use it 5 times a week. My baseline definitely continues to improve, but I know when I’ve missed a few sessions. So not the cure for me. 10 years me/CFS and 3.5 years LC vax.
Just bought a hydrogen inhalation machine…. Let’s see what that does 😅
Nick,
Can you share how much improvement you have had and in what areas?
The HBOT has helped with many of my symptoms caused by the vaccine. Breathlessness, increased fatigue, brain fog etc. I have found that the improvement doesn’t last longer than about four days though.
Every story of recovery is like they had four symptoms – I have like 50… We are not the same…
Sounds like post viral fatigue or something.
Those were his main symptoms…. Please check out the recovery stories https://www.healthrising.org/forums/resources/categories/recovery-recovering-stories-click-to-see-categories.123/ I think you’ll find a lot of symptoms. Here are some recent ones:
Jen’s story – bedbound. The most incapacitating symptoms (the full list is far too extensive) have been POTS/dysautonomia, profound weakness, paralyzing near-death level exhaustion (described as metabolic paralysis), and utterly debilitating post-exertional malaise. This “weakness” transcends mere physical fatigue, it manifests as cellular-level frailty, as if my blood is water, my heart struggles for even a single ATP to sustain its next beat, and I don’t have the strength to even open my eyes. People in the ME community call the most severe cases “a conscious coma” and “a living death”.
During my worst episodes, I experienced what I can only describe as “internal shakes”, an invisible high-frequency vibration
From Flo:
Pain that kept me awake (esp. the migraines), and terrible fatigue and brain fog were present since age 29. Multiple infections, environmental, chemical, and drug allergies, and sensitivities. Sinus, throat, and bladder infections, many chest infections, and allergies so strong my palate, ears, and eyes itched and were blocked tighter than a drum. Brain fog, vertigo, light, and sound sensitivity so bad I couldn’t read, watch T.V. or follow a conversation very well.
Melody’s Long COVID story:
She was diagnosed with POTS, hypoxia with oxygen dependence, serious brain fog, developed severe sleep apnea (2023), vertigo, multiple arthralgias (definitely COVID magnified x 1000), insomnia, heart palpitations, hand tremors, fractured ribs and spine, multiple herniated disks; headaches.
I wish Cort and all of you a Happy New Year.
I’m entering my 21st year of ME/CFS, and here’s what I tested in 2024:
– Hydrogenated water with a device called YROGEN 20: it helps me with fatigue, but I don’t abuse it, otherwise I don’t sleep well at night.
– Photobiomodulation: I only did 6 sessions because I suffered a crash afterwards (a bad memory).
– IV ozone therapy in Spain in October: 8 sessions which also helped me with fatigue, but not with post-exercise discomfort.
I also took a lot of supplements throughout the year because my blood work indicated that I was fair on iron, vitamin D, magnesium, etc. except for vitamin B12 which is too high . If I compare my energy level at the beginning of the year, I can say that I have gained at least 30%.
Currently, I’m testing Pectasol, which is a natural concentrate of citrus pectins, believed to help the body detoxify and strengthen the immune system.
I heard from a woman who was doing ozone therapy with me in Spain. She developed fibromyalgia after a long Covid. She had terrible pain and intense fatigue with post-exercise malaise. She has recovered to 80%. She says she no longer has pain thanks to sessions with a chiropractor using the Gonstead method. For her exhaustion, she doesn’t think it was the ozone that helped her, because it was only when she started taking Q10 IV that she felt much better.
I think this is a very beautiful testimony, because who would have thought that after 3 years of suffering, a few Gonstead chiropractic sessions and IV Q10 could be so effective?
je souhaite une bonne année à Cort et à vous tous.
J’entame ma 21ème année d’EM/SFC, et voici ce que j’ai testé en 2024 :
– Eau hydrogénée avec un appareil nommé YROGEN 20 : cela m’aide au niveau de la fatigue, mais je n’en abuse pas, sinon je dors mal la nuit.
– Photobiomodulation : je n’ai fait que 6 séances car j’ai subi un crash par la suite (un mauvais souvenir).
– Ozonothérapie en IV en Espagne en octobre : 8 séances qui m’ont également aidé au niveau de la fatigue, mais pas pour le malaise post-effort.
J’ai également pris beaucoup de compléments alimentaires tout au long de l’année, car ma prise de sang indiquait que j’étais juste en fer, en vitamine D, en magnésium, etc., sauf pour la vitamine B12 qui est trop élevée. Si je compare mon niveau d’énergie au début de l’année, je peux dire que j’ai gagné au moins 30 %.
Actuellement, je teste le Pectasol, qui est un concentré naturel de pectines d’agrumes, censé aider le corps à se détoxifier et à renforcer le système immunitaire.
J’ai eu des nouvelles d’une femme qui faisait de l’ozonothérapie avec moi en Espagne. Elle a développé une fibromyalgie après un long Covid. Elle avait des douleurs terribles et une fatigue intense avec malaise post-effort. Elle a récupéré à 80 %. Elle dit qu’elle n’a plus de douleur grâce à des séances avec un chiropracteur utilisant la méthode Gonstead. Pour son épuisement, elle ne pense pas que ce soit l’ozone qui l’ait aidée, car c’est seulement lorsqu’elle a commencé à prendre du Q10 en IV qu’elle s’est sentie beaucoup mieux.
Je trouve que c’est un très beau témoignage, car qui aurait pensé qu’après 3 ans de souffrance, quelques séances de chiropractie Gonstead et du Q10 en IV pouvaient être aussi efficaces ?
One little statement, “Dr. Hadanny said that if the initial brain scan does not show problems AVIV may not accept the patient because they don’t think the protocol will help.”, explains the reason HBOT has been rejected by the VA. To this day they are still relying on a compilation of studies done in 2018 to that showed minimal results. It was only being used for wounds and PTSD in veterans. That, along with the multitudes of scammers using fake HBOT, has given it a bad reputation. Thank God the Israelis are doing “real” research and putting their knowledge into practice! In a couple more decades these Israeli DRs will start businesses in the US and around the world. If it weren’t for Drs practicing outside of the mainstream US medical system we’d all be a lot worse off! Thanks for this info Cort! Happy New Year and another donation on the way!
Thanks!
Cort, I didn’t see mention of the risks of this therapy in your article. To anyone considering this, please make yourself aware of the risks, both the medical and the “health and safety” types.
There have been many terrible fires caused by operator error, poor adherence to safety protocols and faulty equipment.
There have been accidents involving home oxygen equipment of various types also.
Please make sure the provider has proper safety standards and a good safety record (no doubt accounting for the expense if done privately).
Article highlighting regulatory gaps in the US:
https://www.sltrib.com/news/2023/09/05/an-explosion-lehi-revealed-gaps/
On the plus side, the article also describes a chamber being used with high safety standards. This could be a useful reference point to help people find a facility that is offering the treatment safely.
(Mal de Debarquement syndrome can produce symptoms that feel like you are on a boat, it does not produce cognitive problems nor the 24-hour dizziness)
I have Mal de Debarquement and it DOES cause 24 hour dizziness and cognitive problems.
However ..this article gives me HOPE
Could have just been time for him. A lot of people get a little better then have a massive crash before fully recovering. I’ve seen it happen to others who never did HBOT. My theory is that people need to hit rock bottom before recovering. Some start out rock bottom, some hit it years later.
Either way, glad he’s better.