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

[SB_1108]

@SB_1108 @NelliePledge @NotThisGuy @Laurajnyc @pattismith and anyone else currently doing regular HBOT

how are you guys doing with your treatment?

I did it for about a month without the oxygen concentrator but realized that I needed to change my supplements and buy the concentrator. So I’m about to start back next week. The reason why I needed the break is because I kept getting sicker (not necessarily related to the mhbot, just generally had a health decline). Now that I’m more stable, I feel comfortable starting again.

 

[pattismith]

I started some cessions with my big professionnal O2 concentrator, but I had to stop after a few. I had inflammation in the oral cavity from it, so I guess I was too much sensitive to oxydative stress.

I'm on an AMPK rampage at the moment.

Can I hook HBOT in? Well ... Hypoxia is a cause of ampk activation.

Might it give ampk activation a break and allow things to get back to normal?

Hypoxia also activates the Hypoxia induced factor (HIF1), which switches the Th17/TregFOXP3 balance in favor of the Th17...I can't tell if it is good or bad to activate this HIF1, but a PR member who suffers from Psoriasis (Th17 increased) and ME have noticed that his ME disappears when his Pso comes back, so it may be interesting to dig into this...Although too much Th17 is not good either and can promote some auto-immunity...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3387678/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2140184/

 

[Jesse2233]

I have a cold so I can’t dive until my sinuses clear. Still using supplemental O2 w/o pressure.

The cold (sore throat, sinus congestion, headache, extra fatigue) is my first since falling ill.

Not sure if it’s from...

1. mHBOT waking my immune system up to fight latent infections (as some “never get sick” peeps have reported on Lymenet)

2. overdoing it in Sunday (I foolishly tried both alcohol and coffee within a couple hours of each other, walked 5k plus steps, stood for several hours, missed my dose of LDN, and only got 3 hours sleep. Should note this genuinely feels like a cold and not PEM)

3. or just coincidentaly picking up a bug

I’ve also been reading accounts of people using mHBOT soon after MAH ozone, and that the two have preceived synergistic benefits. The mHBOT supposedly allows the ozone to penetrate deeper into tissue, delivering benefit to areas (presumably organs) it normally wouldn’t

 

[Stretched]

Are you guys using doctors rx for acquiring O2, or is it commercially available? Thanks.

 

[Jesse2233]

Are you guys using doctors rx for acquiring O2, or is it commercially available? Thanks.

Generally requires Rx but my vendor does not

 

[NelliePledge]

Ive only managed to get to the centre for 3 sessions so far not even 1 a week yet. I'm hoping as of next week to make two a week but we will see if I manage it.

I've done two sessions a week for the last two weeks. Now up to a total of 7 sessions and doing depth of 24 feet. I'm cautious about saying this because it could be unrelated I feel like I have a little more energy. Sleep hasn't improved in terms of getting off to sleep which is my big issue.

I had HBOT at lunchtime on Tuesday and then popped into my town centre to a shop walking there buying a couple of items standing at the till and walking back my energy lasted longer than the last time I had been to that shop in the summer. May be a coincidence or placebo - we shall see with more sessions over the next couple of months whether this is maintained or not. Hopefully it is an indication of something more as it was only a small difference.

 

[Jesse2233]

This is an interesting slide from a LymeDisease.org presentation on patient reported alternative treatments (that I would be remiss not posting).

Source:

(At 24:10)

Obviously it's not a strictly defined ME/CFS data set but hyperbaric ranks pretty low (I'm guessing Oxygen is either supplemental O2 w/o pressure or IV ozone).

My understanding of this data is that most people only use HBOT for 20-40 sessions, and in that time lasting benefits do not tend to show up.

Alternatively of course there could be a reporting bias in the aforementioned long term anecdotal accounts from those who benefit singing their gains from the mountaintop (and those that don't benefit don't bother to comment).

 

[Stretched]

Nice chart! The above coincides with my own more topical research.

 

[pibee]

Herbal is easily accessible, while HBOT isn't. you cant compare. but as i've spent much time on Lyme groups i know few things : HBOT not so good rep, there a re many ozone fans who say it's the best lyme treatment. and i noticed mHBOT is popular and successful for autistic kids.


http://www.personalconsult.com/articles/hyperbaricoxygenefficacy.html

http://www.personalconsult.com/articles/hyperbariclymefraud.html

 

[Murph]

This is an interesting slide from a LymeDisease.org presentation on patient reported alternative treatments (that I would be remiss not posting).

View attachment 25210

That chart is very kind to acupuncture and homeopathy by virtue of stacking don't know votes as negative votes. I see no reason not to omit them from the analysis, in which case it looks more like this. (Three columns with differen measures of effectivness, all omitting the not sure votes.)

 

[Jenny]

Reporting back on HBOT. I've done 10 sessions over the last 3 weeks.

Three at 8 feet, 6 at 16 feet and 1 at 24 feet.

16ft is 1.5 ata and 24ft is 1.75 ata.

No problems with it, but no improvements either. I had hoped that at least my sleep would have improved, but it hasn't.

It's early days though - I'm going to 33ft after a few more sessions next week.

 

[NelliePledge]

So oxygen gets a better score than hyperbaric. And homeopathy near the top of the list. Mmm.......?

Are these all people who have actually experienced the approach they are commenting on. Seems plausible the large unsure score for hyperbaric is due to A - not actually knowing what it is, B- not having access to it

 

[NotThisGuy]

did anyone actually found some more information about the decrease of 2,3-Bisphosphoglycerate and possible backfire of long termn hbot?

 

[JES]

@Hip Have you had a chance to properly test your oxygen machine yet? My unit arrived a month ago, it worked for two seconds when I first plugged it in, then the screen went black. Nothing I did has brought it back to life. I'm not too fuzzed about it since this machine didn't seem ideal to reach the kind of oxygen levels that would be required. I had a look at some other units and the ones that provide 5L/min at 90-95% concentration are typically around twice as big and twice as expensive, for example this one.

I might invest in a proper machine after Christmas, although the thing I would be really interested in is mHBOT with supplemenetal oxygen. My inquiries revealed that oxygen chambers require prescription on every American site I went through. In Europe it might be possible to buy one without prescription, but the price is high.

 

[Jesse2233]

@JES you may be able to find one second hand in the US w/o the need for a prescription

Update:

Since my first dive on 9/20/17 (80 dives total) my TNFa has gone down substantially (77 to <5; Ref <22 as measured by ARUP) and my NKC function has gone up (9 to 22; Ref 7-125 as measured by Quest).

Of course correlation is not causation, but previously my TNFa had been steadily inching up.

Steps per day and ability to drive have also improved

 

[Hip]

@Hip Have you had a chance to properly test your oxygen machine yet? My unit arrived a month ago, it worked for two seconds when I first plugged it in, then the screen went black.

That does not sound very good. I hope you are going to be refunded.

You bought the same model as I did, right, this one here? Mine is functioning OK so far. When you plug the power lead in, you get a bright blue illumination behind the water tank, which comes on even with the power button switched off (the power button is the leftmost of the 5 buttons in the front of the machine). This blue light comes on as soon as the machine is plugged into the mains power.

So you'll want to check that this blue illumination behind the water tank is on, otherwise you may not have plugged in the power lead properly. The Chinese adaptor plug they supplied with this machine was badly made, and hard to push the plug into, so I used another Chinese adaptor plug that I already had.

When you actually turn the power button on, the LCD display lights up blue, and the oxygen immediately starts getting pumped.

I use the machine on the 75% oxygen at 2 liters per minute setting (which actually gives you more oxygen than the 90% at 1 liter per minute setting). I have not noticed much from using, apart from perhaps a slight improvement in my ADHD symptoms in the hours just after breathing the oxygen. I am using it for 1 hour daily, but not every day.

 

[Jesse2233]

A nice story from a very severe Lyme patient with many ME/CFS like symptoms

Tickboy
Junior Member
Member # 48796 posted 12-19-2017 04:45 AM
Hi everyone! I used to post on here as Lymeboy. But then I had a freakout and deleted my account! Anyway I am back. I have a LOT to say. But for the moment I will just say that I've been doing MHBOT for over a year and I can report amazing results. Mind you, I didn't get where I am with just the chamber alone. But in conjunction with everything else I've done to get where I am, it has been a friggin miracle. Literal miracle. I am not "cured" but Iam in better physical shape than ever and I feel grateful and healthy every day and still going at it. It's late, so I'm gonna cut it short, but I will be checking in to help out and answer questions for anyone looking for their path. (We are all different and what worked for me may not for others)
I had a bad case of neuro Lyme. I had heart issues, fatigue, severe shivering chills, and over the course of 6 years or so, I had every damn symptom lyme can throw at you! Today I am winning the battle. Let's hope it is for good.

It can be won. For me, I wouldn't be alive if I hadn't undergone a complete change of lifestyle and way of thinking. Sounds like a lot but it is the simplest part of all this Lyme business.

I will keep in touch. I've been out running around living the life I thought was gone forever. In fact, being crazy already, I went a little crazier and lived about 3 years worth of life this past year. Injuries sustained and all.

I want to help those that are still suffering. I've been through a lot and I think I have some good stuff to offer here.

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/125201/34

 

[Jenny]

I'm feeling hugely better. This good spell started after 14 HBOT treatments, about a month ago. I've had the best Christmas for 15 years, quite literally. I've now done 23 sessions and have reduced them to once a week over the last 2 weeks.

I'm active all day, don't have to rest after 10 minutes of activity as was the case for the last couple of years, can walk a mile with no problems (haven't tried any further yet), gastro symptoms are better, don't feel cold all the time any more, vastly improved appetite, sleep problems have disappeared. I still have a fast heartbeat and hot flushes though, and don't feel too good in the mornings.

All this may of course just be a random remission (I've had those before), but there's a good chance that the HBOT is really helping. If this is the case, it is the only treatment out of the dozens I've tried over the last 35 years that has had such a dramatic and immediate effect. It remains to be seen whether just one session a week will be enough.

How are others doing?

 

[Hip]

I'm feeling hugely better. This good spell started after 14 HBOT treatments, about a month ago.

Would you know if you are a viral ME/CFS patient, or if you are a Lyme disease ME/CFS patient?

My presumption is that theoretically, HBOT may work better for Borrelia than viruses.

 

[voner]

@Jenny,

did/do you have any pain symptoms? Did it help them? If so what were they etc.