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

[ErdemX]

@ErdemX,

do you have pain or autonomic dysfunction and if so, did the Hbot change it? is it expensive in your country?

I don't have autonomic dysfunction but I have a constant high level of pain, which is usually well controlled with Lyrica. So I did not have pain problem at that time.

I paid 25 Euros for each session (because my condition is not covered by public insurance) with a discount. Normal price should be like 35 Euros for a session.

 

[ErdemX]

thanks for sharing that @ErdemX

Besides the energy and the glow did you notice any improvements in areas like brain fog or restorative sleep?

I also had some moderate improvement in brain fog, so in general it felt like going to a better direction. But I can't say 41 sessions led to an important improvement.

 

[Hip]

There has been a lot of debate on whether Chronic Lyme and ME/CFS are the same disease

Even if Lyme and ME/CFS were the same disease, but just caused by different pathogens, any success that HBOT has in treating Lyme would not necessarily translate to helping virally-triggered ME/CFS, because HBOT may work for Lyme by killing the Borrelia bacteria.

Borrelia is a microaerobic bacterium (microaerobic = living in environments of very low concentration of oxygen, making it almost but not quite anaerobic).

Now oxygen is toxic to anaerobic bacteria. Thus the increased blood and tissue oxygen levels achieved during HBOT may conceivably have a bactericidal effect on Borrelia, which is as near as damn it an anaerobic bacterium.

It says here that:

Obligate (strict) anaerobes die in presence of oxygen due to the absence of the enzymes superoxide dismutase and catalase which would convert the lethal superoxide formed in their cells due to the presence of oxygen.

 

[NotThisGuy]

Even Lyme and ME/CFS were the same disease, but just caused by different pathogens, any success that HBOT has in treating Lyme would not necessarily translate to helping virally-triggered ME/CFS, because HBOT may work for Lyme by killing the Borrelia bacteria.

Borrelia is a microaerobic bacterium (microaerobic = living in environments of very low concentration of oxygen, making it almost but not quite anaerobic).

Now oxygen is toxic to anaerobic bacteria. Thus the increased blood and tissue oxygen levels achieved during HBOT may conceivably have a bactericidal effect on Borrelia, which is as near as damn it an anaerobic bacterium.

It says here that:

In the thread the user "Phoiph" said he had bartonella and HBOT was the only treatment that helped him.
So I don't know if you can determine the success of HBOT by infections of aerobic or anaerobic pathogens

 

[Hip]

In the thread the user "Phoiph" said he had bartonella and HBOT was the only treatment that helped him.
So I don't know if you can determine the success of HBOT by infections of aerobic or anaerobic pathogens

I can't find the comment you are referring to (and there does not appear to be any user called "Phoiph"). But since people can have Lyme with confections such as Bartonella, it's possible that they did have Lyme without knowing.


I know one ME/CFS patient on this forum who was taking regular twice weekly HBOT sessions for free at their local multiple sclerosis hyperbaric chamber, and they said that it helped with the tiredness, but no major improvements. And I know another ME/CFS patient who completed a full course of HBOT, but with no noticeable benefits. I have not come across anyone with ME/CFS who achieved major improvements on HBOT, nor any studies showing major benefits (like remissions) for ME/CFS.

If it were cheap and easy, I'd be tempted to try HBOT for my ME/CFS; but considering the cost, it does not seem like a good value for money gamble.


This may be of interest: Glisodin supplement protects against HBOT DNA damage.

 

[NotThisGuy]

It's in the thread quoted in the first post here:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/125201?
Last post.

 

[gettinbetter]

If it were cheap and easy, I'd be tempted to try HBOT for my ME/CFS; but considering the cost, it does not seem like a good value for money gamble.

Does anyone want to split the cost of a portable HBOT unit here in the Bay Area?
Send me a private message

 

[Hip]

It's in the thread quoted in the first post here:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/125201?
Last post.

Ah, thanks (I thought you were talking about this PR forum thread).

Phoiph does say on that thread that she "had severe neurological Lyme w/Babesia & Bartonella for 8 years".

It's interesting that Phoiph says she found it took over a year of daily 1 hour treatments with a soft HBOT chamber to see significant results. It seems like you do have to make a major commitment to this HBOT therapy in order to see results in Lyme disease.

 

[Jesse2233]

@Hip

If you join this group https://m.facebook.com/groups/208141325919395 you'll see many people with ME/CFS who have achieved remission or near remission with regular, long term, ongoing HBOT. Most of them are in the U.K. and get a substantial discount by going to subsidized MS centers

 

[Hip]

If you join this group https://m.facebook.com/groups/208141325919395 you'll see many people with ME/CFS who have achieved remission or near remission with regular, long term, ongoing HBOT. Most of them are in the U.K. and get a substantial discount by going to subsidized MS centers

Thanks Jesse, I have just now applied to join that Facebook group, and will have read of it. I have an MS charity HBOT centre just over a mile away from me, but unfortunately when I went there a some years ago, they told me it was just for MS patients. It is possible they may have changed their policy now though, so it might be worth me asking again.

 

[aaron_c]

@Jesse2233 you're saying that many of the people who are recovering with HBOT (or mHBOT?) in the group do not seem to have Lymes?

 

[Jesse2233]

@Jesse2233 you're saying that many of the people who are recovering with HBOT (or mHBOT?) in the group do not seem to have Lymes?

Yes that's what it seems like from what they say. I should note that not all of them are reporting recovery but many are significantly better (functional lives) to a degree I've not seen with other treatment reviews. The common denominator seems to be consistent use over a long period of time.

 

[Jesse2233]

This is a great in depth overview of HBOT for ME/CFS by Dr Jamie Deckoff-Jones.

http://www.x-rx.net/blog/2012/04/oxygen-primer.html

I believe she considers it her most effective treatment, more so than antiretrovirals

Her conclusion...

But whatever the mechanism, the proof is in the pudding. Relief is relief. Patients know it if they feel it. If it doesn’t make them feel better they can turn it off. The patients tell you what they need, if you listen. They tell you they have air hunger and are short of breath. Well, not at all surprisingly, oxygen can relieve it. The disease is characterized by diffuse vascular spasm

 

[Jesse2233]

From PR member @Theodore on another thread. 50 sessions of hbot greatly improved his pain symptoms, helped with fatigue, and normalized his SPECT / PET scans

Ok so today I just finished my 50th sessions.

Joints pain are almost gone even if sometimes it's still here but very little.

Fatigue is very variable, sometimes I am great, feeling like I am cured (at rest) and sometimes only slightly better or even the same. So it's very difficult to judge to this point, I am gonna wait because the effects can last up to 1-2 months according to the hyperbaric doctor.

Memory trouble wasn't a big problem but I have it, it's still here as usual, very weird because one of the purpose of HBOT is to enhance blow flow...Tuesday I am having a PET Scan and a SPECT Scan and the hospital is going to do a comparative analysis between the images before HBOT and after.

And later when I asked him if the scans improved...

Indeed!

Almost a normalization of the PET Scan. Spect scan much better but according to the doc, it wasn't a big deal of a hypoperfusion

 

[Jesse2233]

A patient's HBOT story from ProHealth relayed by @Wayne

You asked about my hyperbaric chamber, which is my lifesaver. Honestly, if I skip about 10 days, I start to feel a kind of toxic-unto-death feeling that is just horrible. One hour session keeps that at bay for about 10 days and makes me feel more whole, energetic, and has done good things for my digestion, and I think somewhat saved my brain )))).

I have my own home chamber. This is extremely convenient but its also an expensive item. However many chiropractors and holistic docs carry them these days. To find someone in your area you might google around or you can call oxyhealth, the firm that makes them, in California and ask for a referral.

I would highly recommend it. I went to look at your profile, which I remember reading a while back (I admire your spiritual overview and that pic near Moab is beautiful). I can tell you hyperbaric has really had a tremendously beneficial effect on the wired/tired/toxic feeling and on headaches. It sounds like you suffer from this and I think you are on the right track thinking it might help you.

 

[Jesse2233]

From @Mithriel

I have been going foYea r HbOT every week since 1995. I have had ME since 1968 and atypical MS since 1989.

Basically, the oxygen speeds up healing. Broken bones and cuts mend fast. I think it heals lesions so that scar tissue doesn't build up.

Dr James who introduced HbOT for MS believes that anyone with neurological symptoms should be given it as soon as possible to prevent deterioration. It has certainly been that way for me. I was losing the ability to walk and needed my food cut up and fed to me.

It helps makes me feel brighter, like a day at the seaside (!) and improves sleep but most of all it has stopped what seemed to be an inexorable deterioration.

I think a single session of an hour once a week is different from daily cannula oxygen so Dr Cheney's ideas don't apply.

Mithriel

 

[Murph]

I really like @Jesse2233's broad and open minded evidence gathering approach. I'm not sure I have ever observed someone so diligently work to recover their health! You're an asset to the search for treatments.

However, somewhere between the long time frames taken to achieve remission, the high prices and the lack of plausible mechanism for it to work, my normal willingness to draw evidence from patient reports ebbs with this particular treatment.

Anything you can do for ages and not see an improvement, while the fans tell you you just need to keep going longer, try harder and/or spend more sends me little warning signals.

I'll willingly be corrected, but this is my gut feel.

 

[Murph]

Anything you can do for ages and not see an improvement, while the fans tell you you just need to keep going longer, try harder and/or spend more sends me little warning signals.

Just to argue against myself here for a moment: The parable of the alien race with the block of ice.

They warm it up from zero kelvin to ten kelvin. nothing. 50 kelvin. still solid. 150 kelvin. They've really put a lot of energy into this thing and nothing is happening. 200 kelvin. no change. 250 kelvin. this is starting to look pointless. 260 Kelvin. Nada. this stuff is not going to turn into a liquid. maybe one last blast? they get to 270 kelvin and the bloody thing still sits there looking square and firm. It's time to stop spending good energy after bad. This is a dead end. They quit, disappointed to have not obtained a liquid, and fly off.

 

[Jesse2233]

Thanks for the kind words @Murph

I've never tried HBOT, so for all I know you may be right. It's always wise to have some healthy skepticism.

For me there are enough suggestive studies, compelling anecdotes (in a condition where such anecdotes are fairly rare), and a low enough risk profile (beyond money and time), that it's worth it for me to try. If I go through 40 sessions and it does nothing, then I know it's likely not a good modality for me. But if it gets me to a functional (working) level, and I end up buying a unit for $5k which I use everyday, then it will have certainly been worth it.

 

[gettinbetter]

Hello All
Exiting news
I found an affordable HBOT company in Albany California Bay Area
They are significantly cheaper than the other places I've called
They are called Holistic Hyperbarics
They use soft shelled chambers
http://www.hh-bayarea.com/
510-648-9496
Talk to Alex
If you use them please mention my name Steve from Phoenix Rising this gives me free sessions
I am not invested in the company in any way just wanted to pass along this information for people that want to try but can't afford it