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

[Hip]

I go on road and mountain bike rides now. This past weekend I did 76 miles on Saturday and 53 miles on Sunday. Over the 4th of July weekend I rode from LA to Santa Barbara and back (115 miles each way). I'm working from home full-time and volunteering. Bad days are fewer and farther between. Still have constant sore throat.

Sounds like you have more-or-less fully recovered from ME/CFS. That's great.

I wouldn't be able to say the HBOT or the hydroxychloroquine is specifically responsible for the improvement - I suspect both to some extent.

What was the reason you started taking hydroxychloroquine? As an autoimmune treatment perhaps?

In this post you say you started hydroxychloroquine (Plaquenil) in August 2018, so that is now two years you have been on this drug. From that post, it sounds like you made quite significant improvements in just the first two months on hydroxychloroquine. What hydroxychloroquine dose have you been using?

I recently speculated in this thread that hydroxychloroquine + zinc might be effective for the enterovirus infections found in ME/CFS. Supplemental zinc may be important to elicit the antiviral effects of this drug.

I've just started taking hydroxychloroquine 200 mg + zinc 50 mg daily, in the hope that this might help my enterovirus ME/CFS. So it's interesting to see that you did well on hydroxychloroquine + HBOT.


What viral infections are associated with your ME/CFS? Is just EBV?


Were you using a home soft HBOT chamber (the ones that are typically 1.3 atm pressure)?

I've considered making a separate thread to document things.

That would be great. I recently started a thread called List of ME/CFS Recovery and Improvement Stories, and it would be good to include your story in that thread.



I saw in your other posts that you were mild, bordering moderate, on the ME/CFS scale of very severe, severe, moderate, mild, remission (before your hydroxychloroquine and HBOT treatment).

So it sounds like that as a result of treatment, you made a 1½-level improvement on that scale, moving from mild/moderate to remission, over the last two years since Aug 2018.

 

[used_to_race]

Sounds like you have more-or-less fully recovered from ME/CFS. That's great.

Yeah I would say that I'm about 90% back to normal.

What was the reason you started taking hydroxychloroquine? As an autoimmune treatment perhaps?

My doctor thought there might be some evidence I have an inflammatory process going on. Cytokine results and most inflammatory markers were mostly normal and I didn't test positive for any specific autoimmune pathologies, but there were some slight findings and a positive ANA. I think the other evidence he was looking at was a pattern of capillary density in my fingernail beds that is characteristic of undifferentiated connective tissue disorders. Based on this, he thought it was worth the limited risk to give the drug a try.

In this post you say you started hydroxychloroquine (Plaquenil) in August 2018, so that is now two years you have been on this drug. From that post, it sounds like you made quite significant improvements in just the first two months on hydroxychloroquine. What hydroxychloroquine dose have you been using?

I had a lot of ups and downs in the 6 months after starting the drug. But yeah after about a month I started feeling better, but the whole holiday period of 2018/19 I was feeling rough. This was after I got a colonoscopy to rule out IBD and I think the effects on my gut lingered for a while. In reality, it was a gradual process of improvement - the bad months turned into bad weeks, and now it's usually just a bad day or two every so often. I'm taking 400mg daily. A lot of people have side effects with this drug but I am lucky to have none that I can discern.

What viral infections are associated with your ME/CFS? Is just EBV?

Yeah I never tested positive for anything except EBV and HHV6. Negative via Dr. Chia's tests for all the enteroviruses (maybe I had a weak titer for one or two of them, I can't remember). Negative for everything on the Igenex panel. Negative for CMV. Illness onset was after acute EBV infection in 2016.

Were you using a home soft HBOT chamber (the ones that are typically 1.3 atm pressure)?

Yes. I was using it basically daily until maybe 3 months ago. Now I just use it when I have free time. I'd like to know if it was ever helping but I'm afraid that would be hard to say - I don't particularly feel like discontinuing completely and running the risk of getting worse again, although it would likely be a gradual process. Same thing with the HCQ.

So it sounds like that as a result of treatment, you made a 1½-level improvement on that scale, moving from mild/moderate to remission, over the last two years since Aug 2018.

Yeah that's accurate. At my worst I was perhaps moderate but definitely not severe. I never had consistent PEM as I understand it, but I’m pretty sure not everyone who posts on here really does. Sometimes exertion of any sort would seem to make me worse, other times I would rest and just feel worse afterward anyway. I definitely had POTS which is 99% in remission due mainly to the fludrocortisone I believe. My immune system isn’t great still - I think I got sick 4 or 5 times in the first few months of 2020, and although I recovered pretty quickly each time, I know that’s not normal.

 

[Sushi]

I am starting “mild” (soft chamber) HBOT tomorrow!

 

[used_to_race]

I am starting “mild” (soft chamber) HBOT tomorrow!

Did you get a home chamber? Which brand?

 

[Swim15]

Has anyone been able to make any in depth comparisons between HBOT and frequent or high dose ozone therapy? Would be much cheaper and easier long term to me than having access to HBOT

 

[Sushi]

Did you get a home chamber? Which brand?

Yes, a Newtowne. I got it assembled with some difficulty and have done the test inflate but have had to postpone my first ‘dive’ until the experienced diver who will be with me on FaceTime (in case I have questions) recovers from a crash.

 

[Sushi]

Has anyone been able to make any in depth comparisons between HBOT and frequent or high dose ozone therapy? Would be much cheaper and easier long term to me than having access to HBOT

I did IV Hydrogen Peroxide and rectal ozone years ago and they helped a lot but the IVs were too hard on my veins—I couldn’t do it again because of that. Note: you can rent home soft hyperbaric chambers from the companies that sell them.

 

[Swim15]

Been looking at buying a chamber but would really like something that goes into the 2-3atm range. Pretty cost prohibitive though.

would be cool if enough people on here got together to get one but having it in a central location would be the main issue.

So fucking frustrating that there are some viable options out there that are just too costly.

Still going to hit up a few of the people I know that are worth $100 million + and see if they’d throw $75k my way though

 

[used_to_race]

Been looking at buying a chamber but would really like something that goes into the 2-3atm range. Pretty cost prohibitive though.

Why do you want something in the 2-3atm range? Is there any specific evidence you've seen that this is a more effective range?

 

[Swim15]

Why do you want something in the 2-3atm range? Is there any specific evidence you've seen that this is a more effective range?

A number of people, like the one above anecdotally, that higher pressures help them more. More so want to do something to it’s full potential so I can say I haven’t left any stones unturned but may have to settle with a 1.5atm

I’ve seen a lot of 1.3atm but does anyone have any links for 1.5?

 

[used_to_race]

A number of people, like the one above anecdotally, that higher pressures help them more. More so want to do something to it’s full potential so I can say I haven’t left any stones unturned but may have to settle with a 1.5atm

I’ve seen a lot of 1.3atm but does anyone have any links for 1.5?

You're just going to have oxygen toxicity more readily if you're frequently using 2 or more atm. You can run the numbers but I don't know how safe it is to be in 2atm with supplemental oxygen for more than 30ish minutes at a time. When I did the calculation for 1.3atm and guessing the % oxygen I was breathing, I determined that it was just about safe to stay in the home chambers for several hours at a time, in case I wanted to sleep in one overnight - which I've never felt comfortable with doing. I guess the main factor is the % oxygen but if you are going up to 3atm I would certainly imagine you're taking a risk. Besides, it's not necessarily better to have higher pressure. I think the cardiovascular system has barosensor cells or tissue structures that simply respond differently to different balances of pressure/time of exposure. If we don't know the mechanism of action, we can't really speculate on what works or why - and it's really hard to do a randomized controlled trial of HBOT because of the cost and time involved, not to mention how hard it is to fake pressure. Frankly I don't see how it could ever be studied in even moderate ME/CFS without shipping home chambers to all participants at enormous expense. And then the placebo effect in this disease is apparently huge - just look at the recoveries in the Rituximab phase 3 trials in the placebo arm.

I also want to emphasize that I have no idea if it is the HBOT that is helping me or the prescription medications I am taking. Of the three things I'm consistently doing (plaquenil, florinef, and hbot), the only one I am confident is truly helping is the florinef. I have low-moderate confidence in the other two interventions to be honest.

 

[Wayne]

Been looking at buying a chamber but would really like something that goes into the 2-3atm range.

@Swim15 -- I started out at 2.0 ATM in a clinical setting. After a 5-6 dives, I requested it be lowered to 1.75 ATM, because 2.0 felt like it was too intense. I eventually purchased a 1.3 ATM unit, and feel it is more than adequate to saturate my body with oxygen. The woman I purchased the unit from told me that if I wanted to get more oxygen that would be similar to being in a 2.0 ATM chamber, then I could just stay in another 15 minutes or so.

I've read that if a person is going to do long-term HBOT therapy, the lower pressures are actually the way to go. There are apparently certain "effects" that can happen when doing long-term HBOT at higher pressuress that don't show up at lower pressures (I don't recall what they were).

Though I'm happy with my 1.3 ATM, I do wish at times I had a 1.5 ATM. One of the reasons I purchased a Summit-to-Sea model (besides being one of the least expensive) is that they are all tested and approved to handle 1.5 ATM. Europe doesn't have a 1.3 ATM maximum law like the U.S.. but they didn't want to make a totally different model. I've heard you can purchase a different pressure valve that can replace the valve that prevents pressures higher than 1.3 ATM.

Another thing I discovered: In the beginning, I would try to do an HBOT session every day. After a while, I discovered that it was actually too much for my body. And I've since settled into about a 3x/week regimen. It seems to work better for me, and I no longer come out of a chamber feeling somewhat of a "hangover".

I used to think this hangover was from some kind of detoxification process, but I've since come to believe I was saturating my body with too much oxygen on a daily basis. -- My average length of time in the chamber is about 45-60 minutes, and I almost always go to sleep after about 10-15 minutes. -- If you thought in terms of not needing $75K for a high pressure chamber, perhaps your potential source of financial assistance wouldn't have to be limited to somebody worth around $100 million!

 

[Swim15]

@Wayne thanks for the info! That’s really helpful and in that case maybe a 1.3-1.5 would be plenty. Could also add 100% O2 and I’m sure that would help.

How much have you improved functionally and what virus were you treating if you don’t mind me asking? If you got labs done

 

[Sushi]

Been looking at buying a chamber but would really like something that goes into the 2-3atm range. Pretty cost prohibitive though.

If you are in the States you can only go to 1.5 in a home unit as Wayne mentioned.

I’ve seen a lot of 1.3atm but does anyone have any links for 1.5?

Summit to Sea.

I've heard you can purchase a different pressure valve that can replace the valve that prevents pressures higher than 1.3 ATM.

Yes, Summit to Sea has the option to switch to a 1.5 valve on most units.

Here is a head scratcher: I live at 5000 ft so my baseline ATA is .835 rather than 1. When my chamber is at full pressure the ATA is 1.135--which is the same increase in pressure as going from 1 to 1.3 (if I have calculated correctly). So the question is do you get the same therapeutic benefit going from .835 to 1.135 as you would going from 1 to 1.3? To get to 1.3 I'd have to have a Summit to Sea with a 1.5 valve.

BTW there is a very cool app called Free Air Pressure that lets you track all this while in the chamber.

 

[Swim15]

Checked them out and may do that...I contacted them to see if they had a 1.5 adaption and they said they arent allowed to sell more than 1.3 in the US. Did you see anywhere you could get one online?

As far as your calc I would think that’s correct

 

[Sushi]

.I contacted them to see if they had a 1.5 adaption and they said they arent allowed to sell more than 1.3 in the US.

You called Summit to Sea or a distributor? There are a number of people in the mHBOT group who have Summit to Sea models that go up to 1.5 ATA. The person to talk to a S to S is Bruce.

 

[dahsar]

Checked them out and may do that...I contacted them to see if they had a 1.5 adaption and they said they arent allowed to sell more than 1.3 in the US. Did you see anywhere you could get one online?

As far as your calc I would think that’s correct

Did you get one? Very interested in trying HBOT but at a clinic for 15 sessions

 

[Sushi]

Did you get one? Very interested in trying HBOT but at a clinic for 15 sessions

Depending on what the clinic charges, it might be less expensive to rent one. Most of the major brands will rent them or do rent-to-own.

 

[gerard]

Hi, I have been treating with mild hbot daily for 2 years and 1 month - while on the Wheldon antibiotic protocol for chlamydia pneumoniae for 1 year 8 months. I am not cured but there is slow constant improvement of my condition. I have went from 15% to 60% functional. My impression is that hbot alone will not remove chlamydia pneumoniae.

Here is a before after hand photo - 10 months treating with both hbot and wheldon protocol.

 

[dahsar]

If you are in the States you can only go to 1.5 in a home unit as Wayne mentioned.
Summit to Sea.
Yes, Summit to Sea has the option to switch to a 1.5 valve on most units.

Here is a head scratcher: I live at 5000 ft so my baseline ATA is .835 rather than 1. When my chamber is at full pressure the ATA is 1.135--which is the same increase in pressure as going from 1 to 1.3 (if I have calculated correctly). So the question is do you get the same therapeutic benefit going from .835 to 1.135 as you would going from 1 to 1.3? To get to 1.3 I'd have to have a Summit to Sea with a 1.5 valve.

BTW there is a very cool app called Free Air Pressure that lets you track all this while in the chamber.

I’m interested in the Shallow Dive by s to s.

What do you think?