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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Long-term daily mHBOT and full recoveries w/ ongoing maintenance

Hip

Senior Member
Messages
17,824
I was at a deeper pressure than before 24 rather than 16. Deepest is 33 sorry not sure what the measure is called.

Those measures could be equivalent to dive depths in meters, in which case 16 meters would be equivalent to 1.6 atmospheres pressure. In dives, you increase the pressure by 1 atmosphere for every 10 meters you go down.
 
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Jesse2233

Senior Member
Messages
1,942
Location
Southern California
Doing my 5th horn dive now, which is around my 20th dive overall

Have to say I'm noticing some profound improvements in mental and physical stamina. Steps per day is again approaching 3k (had dropped off IVIG), and mental clarity and sharpness is better than it's been at any point since onset. As an example I was able to see the new Blade Runner film in theatres with almost no sensory overwhelm. For comparison back in February, a slower gentle movie about orphan children I tried to watch in the same theatre was too much and I had to leave after 20 minutes.

I also spoke to Phoiph (the originator of the Lyme thread referred in this thread).

She's been very supportive through this whole hbot experience, truly a godsend.

Sincr becoming well from mHBOT several years ago she's guided ~200 people with chronic complex illnesses in getting mHBOT.

Some takeaways from our call:

- she's observed no differences in how those diagnosed with Chronic Lyme, ME/CFS, or POTS respond. She said she has seen recoveries across the board using the same treatment protocol of 1 hour a day w/ supplemental oxygen at 1.3 ATA over 6-18 months

- she believes benefits come from mHBOT's metabolic mechanism of action

- she strongly cautions against too much too soon as people with our condition are sensitive and should work up extremely slowly (20m to start without supplemental oxygen)

- she has seen people do best when they are doing no other treatment besides mHBOT, clean diet, lots of resting, and very gradual increases in activity

- she says there's an initial honeymoon period and one should be careful not to overdue it during that time

- she advises one rest immeadiately after mHBOT to allow the body to fully benefit
 

Hip

Senior Member
Messages
17,824
Have to say I'm noticing some profound improvements in mental and physical stamina. Steps per day is again approaching 3k (had dropped off IVIG), and mental clarity and sharpness is better than it's been at any point since onset. As an example I was able to see the new Blade Runner film in theatres with almost no sensory overwhelm. For comparison back in February, a slower gentle movie about orphan children I tried to watch in the same theatre was too much and I had to leave after 20 minutes.

Sounds very encouraging. It's good to use objective measurements of improvements in symptoms, in the way that you have done with your sensory overload responses to going to the cinema.

This is because memory can be unreliable when it comes to how we subjectively feel; subjectively, I find I can only really say whether I am feeling better or worse today than I was yesterday or the day before; but it is very hard to remember how you subjectively were feeling say one month ago, or 3 months ago, compared to today. By subjectively I of course mean the way humans are self-aware of their own mind state and the sensory conditions of their body. So memory of our subjective mental state seems to fade fast, whereas we remember much better any external tasks or activities we engage in (objective conditions).

One of the objective measures I use is my ability to write software (which used to be my profession): I find that with the brain fog of ME/CFS, computer programming is usually beyond me; but on occasions where I have temporarily made major improvements, I suddenly find myself able to program again. So this I use as an objective measure of the severity of my ME/CFS.
 
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Hip

Senior Member
Messages
17,824
By the way, four days ago I emailed the HBOT expert (Prof Harch) that you recommended to me in the HBOT Facebook group, regarding the issue of whether breathing near 100% oxygen via a non-rebreather mask at normal pressures (NBOT) might be just as effective as mild HBOT. So far, no reply.

Tomorrow my oxygen concentrator machine arrives, so I will be joining you in these oxygen experiments.
 

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
That's great @Hip! Looking forward to reading your results

Totally agree on the objective measuring. It's a bit tricky with cognitive metrics, though I suppose one could do a standardized set of tests. I have a trivia app on my phone that I've used as a rudimentary substitute

I've not heard back from Dr Harch either. I spoke to one of his nurses and she said he's currently very busy. I'm also reading his book "Oygen Revolution". One interesting thing he notes is the the synergistic benefit of LDN and HBOT in a Parkinson's patient (pg 149).
 

Nickster

Senior Member
Messages
308
Location
Los Angeles, CA
LDN has really helped my son with his immune system. He used to have severe allergies and now he barely uses a Kleenex. Also, it helps a bit with his pain. He still has all of the other me symptoms such as fibromyalgia, fatigue, disautonomia and brain fog.
 
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Jesse2233

Senior Member
Messages
1,942
Location
Southern California
Had a brief respite from POTS after a session of mHBOT today that I want to document. Resting HR is around ~48bpm usually increases to ~75, today after standing for 20m my HR was only 58

upload_2017-10-26_22-10-55.png


Several hours later POTS as normal returned.

Also noticing brief moments where my personality and old interests are returning.

I need to be careful testing my limits. After mHBOT tonight I drove about an hour on Los Angeles freeways at rush hour, which was still a bit too much for me.
 

pattismith

Senior Member
Messages
3,930
@Jesse2233 , your results look promising!

By the way, four days ago I emailed the HBOT expert (Prof Harch) that you recommended to me in the HBOT Facebook group, regarding the issue of whether breathing near 100% oxygen via a non-rebreather mask at normal pressures (NBOT) might be just as effective as mild HBOT. So far, no reply.

Tomorrow my oxygen concentrator machine arrives, so I will be joining you in these oxygen experiments.

I think I shall receive my non rebreather mask soon, so I will update my own trial too.:thumbsup:

I will be very careful, because my lungs, nose and throat are already damaged, so I will start short cessions I think.

However, I started a new brand of Ubiquinol a few days ago that seems quite powerful on me, and I feel great today!
 

ivorin

Senior Member
Messages
152
@Hip and @Jesse2233 Help me out here boys, what's the equivalent of 20 mins no supplemental oxygen mHBOT with an oxygen concentrator. How much O2 per liter and for how long, my physics are not good enough to calculate it. Also, what do you expect the difference is if I use the nasal cannules instead of a mask. I have a concentrator and would like to try it as close as possible to the protocol numbers. Cheers, let's make these experiments happen :)
 

pattismith

Senior Member
Messages
3,930
Also, what do you expect the difference is if I use the nasal cannules instead of a mask. I have a concentrator and would like to try it as close as possible to the protocol numbers. Cheers, let's make these experiments happen :)

nasal cannules wouldnot work, because you need to breath 100% oxygen, which can't be reached with nasal cannules.
here what it looks like:

https://image.slidesharecdn.com/oxy...ygen-delivery-system-14-638.jpg?cb=1485713341

I bought mine at Distrimed, it costs peanuts, but I haven't received it yet, so I can't say if it works properly:

http://www.distrimed.com/product_info.php?products_id=6913
 

ivorin

Senior Member
Messages
152

Hip

Senior Member
Messages
17,824
My oxygen concentrator machine arrived yesterday, but there is an issue: although in the specs it says my machine can deliver 90% oxygen, and can deliver 5 liters per minute, it turns out that it cannot do both at the same time.

When set to 90% oxygen, my machine outputs only 1 liter per minute; and when set to 5 liters per minute, it supplies only 30% oxygen. (It did occur to me that this might be the case, and I made mental note to ask about this before buying the machine, but of course I forgot my mental note — brain fog strikes again).

These are the settings available on my machine:

90% oxygen at 1 liter per minute
70% oxygen at 2 liters per minute
50% oxygen at 3 liters per minute
40% oxygen at 4 liters per minute
30% oxygen at 5 liters per minute

At rest humans breathe around 6 liters of air per minute, so at a minimum, you'd really need to more-or-less match this air flow, and that's why 5 liters per minute would have been just about adequate.

So anyone looking to buy an oxygen concentrator, be aware of these issues. I guess it would cost more money to get a machine capable of 90% oxygen at 5 liters per minute.

I am still going to try using my oxygen concentrator, but I will not be able to get the 90% oxygen level I was aiming for. I have also come up with a (rather complex) method that I may be able to employ to get my machine to provide 90% oxygen at 6 liters per minute, so that's something I may try later.



what's the equivalent of 20 mins no supplemental oxygen mHBOT with an oxygen concentrator.

It's hard to do an exact calculation (because of the complexities explained in this post), but as an approximation, I'd estimate that a mild HBOT session at 1.3 atmospheres without extra oxygen is going to increase blood levels of dissolved oxygen by a tad more than 1.3, so let's say 1.5 times.

Thus to get the same effects from an oxygen concentrator at normal pressure, given that the oxygen concentration in air is normally 21%, you would have to be breathing 21% x 1.5 = around 32% oxygen.

So breathing around 32% oxygen at normal pressure should be equivalent to mild HBOT at 1.3 ATM with no supplemental oxygen.
 
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Ember

Senior Member
Messages
2,115
The key difference from the HBOT reports I've read on PR and the ones on this thread are frequency and quantity of use. Some of these patients went a full year every day before seeing significant improvement. Official HBOT studies (scarce as they are) are much shorter term, encompassing only 20-60 sessions....

I want to share this thread to give hope, and to see if anyone here has had a similar experience.
A word of caution may be in order. I did 60 HBOT dives—20, then a gap, and then 40 more—with no significant improvement in my ME symptoms. That was seven years ago. I was warned at the time about developing cataracts as a possible consequence. And sadly, cataract surgery hasn't gone well for me.
 

Hip

Senior Member
Messages
17,824
I was warned at the time about developing cataracts as a possible consequence. And sadly, cataract surgery hasn't gone well for me.

Sorry to hear that, @Ember.

Did your cataracts appear at the time of doing HBOT, or was it only some years later that they appeared?
 

Ember

Senior Member
Messages
2,115
Did your cataracts appear at the time of doing HBOT, or was it only some years later that they appeared?
My cataracts were identified during an eye examination within a year of the completion of my HBOT treatment, as I recall, and they developed in a gradual but seemingly accelerated fashion as I was told that they might. I only recently had an operation on my right eye.

Some of the HBOT patients treated with me were lucky enough to be followed up in a cataract study, but the study closed with the patient who completed immediately before me. I haven't checked for the results of that study.
 

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
@Ember thank you for sharing, I'm sorry you had this experience, stories like yours are important to be aware of

Cataracts are certainly a real potential side effect of HBOT. Do you remember what pressure you used and how long your sessions were?
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
A word of caution may be in order. I did 60 HBOT dives—20, then a gap, and then 40 more—with no significant improvement in my ME symptoms. That was seven years ago. I was warned at the time about developing cataracts as a possible consequence. And sadly, cataract surgery hasn't gone well for me.
As I've mentioned in earlier posts, it is very wise to monitor antioxidant ststus while doing oxidative therapies. While oxygen has many benefits, too much of a good thing can be bad.

This paper, among others, link is cataracts to oxidative stress, and I've seen others where they can be slowly rebmversed with antioxidants.

https://www.hindawi.com/journals/omcl/2013/587826/

My doctor ran a NutrEval test after a few months of HBOT and a few ozone IVs and UVBI treatments. Though I was taking a comprehensive set of antioxidants, we found we needed to increase antioxidants further to provide balance. Too many antioxidants can backfire, too, so its monitoring and finding the sweet spot.

I'm taking 50,000 IUs vitamin A, 4g vitamin C, taking PolyMVA (alpha lipoic acid) and ALAmax, a mixed tocopherol vitamin E supplement, and having glutathione IVs, along with a complete methylation protocol.

Doing single treatments without s comprehensive approach can create unexpected consequences. Taking a thoughtful, comprehensive approach is a wiser choice.