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

[MEPatient345]

Severe ME (mostly housebound, lying down all day but not bedridden)

 

[Wayne]

How I understand HBOT works is that it creates a spark of oxidation, which then triggers a larger, counter antioxidant response by the body. So, if too much pressure or oxygen is used, it could theoretically cause too much oxidation. But I'm not entirely sure about it.

Hi @junkcrap50,

I'm not clear either on all the mechanisms that make HBOT beneficial. But what I did read recently is that at least part of the benefit comes from oxygen being able to get directly into parts of the body that are not accessible to the oxygen from red blood cells.

I believe that's why mHBOT has been very helpful for many people with Lyme. The Lyme bacteria isolate themselves away from the blood stream, and take up residence in places like the joints (cartilage), teeth and bones, and the brain (and other parts of the neurological system).

Not only can oxygen not reach them in these secluded places, but antibiotics can't either. Which is why many people who take antibiotics for Lyme often either don't get any benefit at all, or the improvements are transitory. Where the Lyme bacteria is killed if it's in the blood, but survives if it's hidden away, and given a chance to spread once antibiotics are stopped.

I'm of the opinion that modern medicine knows relatively little about various kinds of infections that may be lurking in our bodies. Some have estimated there may be as many as 300 tick borne diseases that are still to be discovered. I suspect a good number of these unknown infections play a big role in ME/CFS, and would think mHBOT could be helpful in treating them.

I did 10 sessions back in April at a local HBOT center. The first 8 were at 2.0 ATA, which I discovered were too intense for me. The last two were at 1.75 ATA, and I fared much better. I'm currently in the process of acquiring a 1.3 ATA mHBOT chamber for use at home.

I expect to use it extensively, hopefully 2x/day for months or years. Given the many decades I've been ill, I don't expect it to give me all the benefits I may derive from just a few sessions--which in my mind would be less than 100, or even several hundred. I had noticeable improvements in just the 10 sessions I did, and I'm expecting to build on those improvements with my own chamber.

[Will likely be getting the 33" diameter Summit to Sea Dive model]. [NOTE: -- the short Youtube video in the link shows a 28" diameter model. They just recently improved that to a 33" diameter.] -- Here's some more pricing on the various Summit to Sea models:

Hyperbaric Dives | Chambers​

 

[cigana]

I believe that's why mHBOT has been very helpful for many people with Lyme. The Lyme bacteria isolate themselves away from the blood stream, and take up residence in places like the joints (cartilage), teeth and bones, and the brain (and other parts of the neurological system).

Not only can oxygen not reach them in these secluded places, but antibiotics can't either. Which is why many people who take antibiotics for Lyme often either don't get any benefit at all, or the improvements are transitory. Where the Lyme bacteria is killed if it's in the blood, but survives if it's hidden away, and given a chance to spread once antibiotics are stopped.
​

Sometimes I wonder if MECFS could be caused by something that reduces blood flow to these areas. Then any infection a person has can flourish in the secluded places and can't be detected in blood tests - the symptoms of each person depend on the infection (Lyme, for example).

 

[bthompsonjr1993]

I've had full remission from HBOT. I had done 80 dives using the professional, hard shell chambers. It was not until dive ~75 did I get full remission. I noticed benefits right away in the first 10, then sort of slowely improved or plateaued for a while, and then jumped to feeling better than I did when healthy at around 75. Massive confidence, lightening quick thinking, huge energy, etc. Full remission and feeling superb was lost when I kept doing the HBOT dives and I think I did too much of it, making me feel worse. But I still had the majority of benefits. I think if I stopped right when I was "cured" it would have lasted for quite a while.

I recently bought a soft shell chamber to do HBOT at home more cheaply than at a clinic, but have been delayed in using it while getting it repaired. It was sort of a last resort move, thinking that HBOT was the best thing that's helped me. Its good to know that some people needed to be doing their dives for several months if not years to see improvement.

Did you supplement oxygen with a mask? Or just sit in the tank normally?

 

[junkcrap50]

Did you supplement oxygen with a mask? Or just sit in the tank normally?

I supplement with an oxygen mask. But I use a higher quality non-rebreather mask. Not the simple ambulance masks that you can find on amazon. I use this apparatus but I bought a more comfortable and better fitting mask with a strap. It essentially provides 100% oxygen.

http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

A face mask part more like this. Essentially this setup.

This link talks more about non-rebreather EWOT masks: http://biotoxinjourney.com/the-case-for-mild-hbot/#Masks_038_Cannulas

 

[bthompsonjr1993]

@junkcrap50 this is very helpful, thank you!

 

[Wayne]

This link talks more about non-rebreather EWOT masks: http://biotoxinjourney.com/the-case-for-mild-hbot/#Masks_038_Cannulas

@junkcrap50,

Very timely post for me. I got my HBOT unit last week, and am expecting the O2 concentrator this week. I've been wondering what I could use instead of the cheap cannulas I used at the HBOT clinic. This would appear to be the answer. But I'm not clear on some of the points. Junkcrap, is that you speaking in the video? Could I run any questions by you? -- Thanks for the links!

 

[junkcrap50]

@junkcrap50,

Very timely post for me. I got my HBOT unit last week, and am expecting the O2 concentrator this week. I've been wondering what I could use instead of the cheap cannulas I used at the HBOT clinic. This would appear to be the answer. But I'm not clear on some of the points. Junkcrap, is that you speaking in the video? Could I run any questions by you? -- Thanks for the links!

No. That's not me in the video. That's the guy who runs the biotoxinillness website. Sure you can ask me anything on here. Here's a helpful chart if you're considering options other than cannulas: http://biotoxinjourney.com/the-case-for-mild-hbot/#HBOT_Partial_Pressures_of_Oxygen_Table

With my mask, and the mask in the video, I believe it's delivering 100% oxygen, not the 70% the table shows.

 

[Learner1]

Great link, thanks. I've been doing 2-3 sessions a week with a good mask for over a year.

Curious how you are determining where the "too much oxygen" point is... I think there is such a point and have worked out what works for me but am curious about what others are finding.

 

[junkcrap50]

Great link, thanks. I've been doing 2-3 sessions a week with a good mask for over a year.

Curious how you are determining where the "too much oxygen" point is... I think there is such a point and have worked out what works for me but am curious about what others are finding.

I'm following the established guidelines of only doing a set of 40 dives at a time, for 1 hour, 5 days/week, with Sat. & Sun. off. Then I take at least a 4-6 week break of no dives. Then I repeat the 40 dive set. But of course, I pay attention to my body and have stopped before reaching 40 dives (I keep a dive log book). I stop whenever I feel any increase in inflammation (or any negative change at all): headaches, stiff muscles, joint pain, poor sleep, malaise, etc. A person's sign to stop after too much oxygen is different for every person.

What I"ve typed above is basically what Dr. Paul Harch advised me when I did 2 sets of 40 dives with him in his clinic using the hard shell, 100% oxygen chambers. He does the same thing, but stops after 2 sets of 40 dives. He says he doesn't usually see anyone benefit beyond 2 sets and that's usually the maximum the body allows before oxygen toxicity. In the cases where he does more dives after 2 sets, he usually only does "tune ups" for people who's symptoms have returned. The amount of dives is dependent on the patient and how soon/frequently his/her symptoms return. But his tunes up are usually only 1 week of 5 dives, no more than every 4 weeks.

Since I"m doing a soft shell mHBOT chamber and not using 100% oxygen, only supplemental with a mask. I feel my oxygen dose is not as high as Dr. Harch's treatment. I have not yet exceeded 2 sets of 40 dives. I just finished my second set of 40 using the mHBOT and supplemental oxygen 2 weeks ago. I haven't noticed any improvement or change really with the mHBOT treatment (not think I would using a hard shell HBOT chamber) so I'm very disappointed. But I will likely keep doing sets of 40 dives with long breaks in between in about 4 more weeks.

 

[Learner1]

I find there's a point I get a "sick headache" occasionally and its time to get out. And when I first started, and was doing UVBI, too, my antioxidants became more depleted than they usually are - every single one was low, not just glutathione and vitamin C.

But, keeping at a slower steady program of 2x a week for 70 minutes seems to help.

 

[used_to_race]

What I"ve typed above is basically what Dr. Paul Harch advised me when I did 2 sets of 40 dives with him in his clinic using the hard shell, 100% oxygen chambers. He does the same thing, but stops after 2 sets of 40 dives. He says he doesn't usually see anyone benefit beyond 2 sets and that's usually the maximum the body allows before oxygen toxicity. In the cases where he does more dives after 2 sets, he usually only does "tune ups" for people who's symptoms have returned. The amount of dives is dependent on the patient and how soon/frequently his/her symptoms return. But his tunes up are usually only 1 week of 5 dives, no more than every 4 weeks.

You're saying that, according to Harch, nobody really benefits after ~80 treatments? If that's so, it strengthens my inclination to send my chamber back...

 

[junkcrap50]

You're saying that, according to Harch, nobody really benefits after ~80 treatments? If that's so, it strengthens my inclination to send my chamber back...

He was speaking about HBOT (100% oxygen 1.4 ATA, hard shell) for head injuries (which is what I was seeing him for, prior to knowing I had CFS. I also had prior concussions, which I thought was responsible for my CFS symptoms), but that's what I remember from back in 2012. That additional benefits are unlikely to be gained by doing more than 80 treatments. Whatever benefits gained in the first 80 dives, are usually all you get. He says that you reach the point of diminishing returns after 80 treatments. But this obviously wasn't true for people who needed tune ups. He spoke about one meteorologist, who visited him for tunes up every 1-2 months.

But there might be new things now and he was speaking in general for most patients. Perhaps those are hardcast rules; perhaps he's trying to help patients save money (as each dive was ~$100); perhaps it's different for different diseases; perhaps that 80 dive limit doesn't apply if you take an extensive break from HBOT beyond 4-6 weeks for set 3; etc. Looking at his website, he seems to have become more involved in treating chronic diseases with HBOT rather than just head injuries and combat related injuries back in 2012. If you want more specific information, look up his published research.

Whether this applies to CFS or Lyme (as Lyme patients have done HBOT for a year before seeing improvement), I can't say. I don't think it applies if you are doing 1.3 mHBOT soft shell without supplemental oxygen.

You could also try calling his clinic and speaking to the receptionist to verify what I said. You won't be able to speak to him, but I"m sure the person on the phone knows enough.

Feel free to message me privately more questions and more info about your experience with HBOT

 

[bthompsonjr1993]

I find there's a point I get a "sick headache" occasionally and its time to get out. And when I first started, and was doing UVBI, too, my antioxidants became more depleted than they usually are - every single one was low, not just glutathione and vitamin C.

But, keeping at a slower steady program of 2x a week for 70 minutes seems to help.

Interesting! So overall, how much would you say that form of HBOT has helped your CFS so far? Has it has a noticeable positive effect? If so, was it slight or very significant?

Thanks for your input, I am trying to decide whether I should get a mHBOT tank myself!

 

[Learner1]

I'd say HBOT has been a helpful part of a comprehensive program that has included IVIG, antivirals, antibiotics, nutrients, and POTS and MCAS meds.

Especially if one's blood is thick, which mine is, HBOT pushes oxygen into hypoxic tissues, helping all the other treatments to be distributed throughout the body.

So, it wouldn't be the first place is spend money, but has definitely been helpful. I am functioning much better tban when I started with it 18 months ago.

 

[bertiedog]

Especially if one's blood is thick, which mine is, HBOT pushes oxygen into hypoxic tissues, helping all the other treatments to be distributed throughout the body.

My blood tends to be on the thin side but I still have tissue hypoxia according to a test done by a private hospital on my autonomic nervous system. I benefit from using my oxygen concentrator every time I use it which is 3 times a day for 30 minutes maximum.

I am hoping to start HBOT sessions soon but cannot do more than 2 weekly. I have tested positive for borrelia and anaplasma so will be interested to see if these sessions make any difference to energy that doesn't run out after 30 minutes and also as to whether my immune system improves during the winter months. Usually it's rubbish at this time and I pick up so many viruses it is ridiculous.

Pam

 

[Peyt]

I don't know how likely Jesse is to see this at the moment but his is an OxyHealth Vitaeris 320.

There will be no difference in the pressure or blood/tissue oxygenation properties of chambers with different diameters. A 21 inch diameter is really small and I would recommend at least a 27 inch model if you are a normal sized adult, although 21 inches would not be totally impossible to use.

Hi used_to_race (or anyone else who may know the answer)
So I am getting very close to renting a HBOT for a month to see if it improves my condition before deciding to make the actual purchase. So I went back to my friend who told me he liked the 21 inch better than the 27 inch and found out one detail that he had left out when we originally talked about this.... The brand for the 21 inch rental was Oxyhealth vs the one he ended up buying (which is actually 26 inch not 27) is "Summit by the Sea"..... just to give you an idea as far as price, a 21 inch Oxyhealth costs close to $7500 (not including the concentrator) vs. Summit to Sea 26 inch which can be purchased for about $4000(not including the concentrator).... both offer the same 1.3 ATA..... Don't get me wrong, my friend is happy with the Summit to Sea brand, but he says if money was not an issue he would have gotten the Oxyhealth because he felt slightly better oxygen delivery….. So I want to do this right from the start, so I am now wondering, has anyone had experiences with multiple brands and is there any advantage to go with Oxyhealth vs. Summit to Sea? … I don't care about the chamber having more windows or bells and whistles like that.. I am concerned about the oxygen delivery. Any thoughts? Thanks so much.

 

[junkcrap50]

Don't get me wrong, my friend is happy with the Summit to Sea brand, but he says if money was not an issue he would have gotten the Oxyhealth because he felt slightly better oxygen delivery…..I don't care about the chamber having more windows or bells and whistles like that.. I am concerned about the oxygen delivery. Any thoughts? Thanks so much.

If they both give the same pressure, there is no difference in terms of oxygen delivery. I don't know what your friend is talking about.

Oxygen delivery is a function of pressure and concentration. Higher pressure will give you higher oxygen delivery. Adding supplemental oxygen via an oxygen concentrate will give you higher oxygen deliver. Then it becomes a questions of oxygen concentrator flow rate and mask. Brand doesn't make a difference on what you're wondering. Brand only makes a difference for build quality and durability.

 

[used_to_race]

both offer the same 1.3 ATA..... Don't get me wrong, my friend is happy with the Summit to Sea brand, but he says if money was not an issue he would have gotten the Oxyhealth because he felt slightly better oxygen delivery….. So I want to do this right from the start, so I am now wondering, has anyone had experiences with multiple brands and is there any advantage to go with Oxyhealth vs. Summit to Sea?

Possibly the cheaper chamber comes with a lower-quality oxygen concentrator? I believe they need to be designed such that they can pump oxygen into the mask despite backpressure from the chamber. Do you know which concentrators the two chambers come with? Otherwise I'd have to agree with @junkcrap50, it sounds like your friend is reporting a subjective feeling that could have no bearing on anything measurable.

As an aside, I have to say that I am doing a lot better for the last month or so guys. My treatment consists of mHBOT 5-6 times per week, Plaquenil 400mg daily, and a specific probiotic that seems to be working better than the other ones I've tried. I still don't know if I can tell which of these treatments is helping. I suspect it is mainly the Plaquenil and the probiotic, but I will be going to a work conference for 5 days here pretty soon in another city. I'll continue taking the plaq and the probiotic, so we shall see what happens. Following that I plan to try no HBOT for 2 weeks and I will report the results here.

Seriously though I am doing a lot better than 6 months ago, when I was missing perhaps 1-2 days of work per week on average thinking I may need to leave my job. I still have bad days but they are less intense and they don't kill my whole week like they used to. This past week I worked 45 hours, some of which I was on my feet going around the office and setting equipment up. I played in 2 soccer games with an intramural team made up of coworkers (we won both games!), I did some weight work in the gym on Friday, and last night I went to a party till maybe 1:30am and had some drinks. This morning my friends got stranded with flat tires on a mountain bike ride and I drove out to pick them up and load up the bikes. It occurred to me that even 3 months ago I would have been struggling to get out the door and help my friends in this heat but it was no problem for me today. I have been sleeping a "normal" amount at night, perhaps 8 or 9 hours. I'd say I'm at an 8.5/10. Still constantly symptomatic, but as I said, the "flares" are less frequent and shorter in duration. My POTS-like symptoms are pretty much gone. I really think at least part of this improvement is from the plaquenil which I started about 2 months ago. If that is the case then I would expect to continue improving over the next 3-4 months based on reports from RA and Lupus patients. I've had no side effects that I can discern.

I don't yet feel comfortable telling anyone that HBOT helped me, but I think in 2 or 3 weeks I will have a better idea and plan to report back. In terms of HBOT, I started in probably May of this year, and hit the 50 session mark around July or August I suppose. So if the HBOT is helping me now then it's about the right timeline in terms of when I started. I guess I will only know when I cut it out temporarily. Guys I am so over the moon with my recent improvements!

 

[Peyt]

Possibly the cheaper chamber comes with a lower-quality oxygen concentrator? I believe they need to be designed such that they can pump oxygen into the mask despite backpressure from the chamber. Do you know which concentrators the two chambers come with? Otherwise I'd have to agree with @junkcrap50, it sounds like your friend is reporting a subjective feeling that could have no bearing on anything measurable.

He currently has the intensity 10 liter. How can you tell which concentrators are capable of pumping oxygen into the mask despite backpressure from the chamber?