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

Jesse2233

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On LymeNet there is a (loooooong) thread of users purchasing soft hyperbaric oxygen chambers (mHBOT) making substantial progress and in some cases full recoveries. Most (if not all) of them have hallmark symptoms of ME/CFS and some also carry it as a secondary diagnosis.

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.

There has been a lot of debate on whether Chronic Lyme and ME/CFS are the same disease, I'm not interested in relitigating that here. Instead I want to share this thread to give hope, and to see if anyone here has had a similar experience.

One user's remarkable story:
Hello, all...

I was just about to start a new thread on mild hyperbaric, then found this one...

I believe you both are referring to my story:

I had severe neurological Lyme w/Babesia & Bartonella for 8 years...considered an antibiotic failure, and so ill I was homebound for 5 years straight.

My symptoms were extreme and relentless; too many to list here. I was told, even by LLMD's, that I needed a miracle, and there was nothing more they could do for me (I tried many, many protocols with never any improvement, just a continual spiral downward).

I eventually became so toxic and environmentally sensitive that I could do no formal treatments (except homeopathy) for 5 years before starting MILD hyperbaric treatment w/supplemental oxygen (I bought my own chamber and self-treated 1 hour daily).

I now have my life back...working again, running (I had been a runner for 17 years, pre-Lyme), traveling, etc. It has been a miraculous recovery, and it is 100% due to mHBOT (along with meticulous diet, and gradual exercise).

I believe success depends on the frequency and consistency of use...many people say they "tried hyperbaric, but it didn't work"...but if you query them, inevitably they didn't do it consistently or frequently enough...or for a long enough duration. You must be committed to this treatment to have success.

I almost made the fatal mistake of returning my chamber after 40 consecutive "dives", not feeling any improvement at that point. Fortunately, I was talked into continuing treatment, and felt the first "change" (not necessarily "improvement") after about 2 months.

It was a rocky, 2-step-forward, 1-step back road, but after several months, although I was not completely well, I was functional again, and after 1-1/2 years, I was "back"...

Now, 2 years from the beginning of treatment, I am still noticing benefits from the chamber...and truly have my life back...very active again...no medications...no restrictions...

Low (pressure) and slow WORKS...I'm living proof...

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

Jesse2233

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From another user also diagnosed with CFS/ME. She's experienced quite the improvement (and also documented it on YouTube). In a nutshell she went from housebound to weight lifting, running 5k's, and working full time.

I think I saw a comment wondering what my 100% will look like...lol

A day in the life of Peimomma at 100%
0500 wake up
0530 run/weights
0800 start work....YAY a job!!!
1730 arrive home from work
1800 cook/eat dinner
1900 project around the house, shopping, walk
2000 read a book, watch TV, internet surfing
2100 prepare for bed
2200 sleeping

It will be at least 9-12 months until I will feel confident in doing the above without being worn down and possible relapse. I do take days off of everything except diving so I don't burn out. after a day or two off I'm excited to get started again with my workout, seeing people, appointments and more.

My schedule these days looks like this
0600-0700 wake
0730- mHBOT
0930- coffee detox or not
1000- morning errands outside the house
1200- lunch
1230- rest for an hour outside or just light reading
1330-1400 house work, laundry, meet friend
1600- run/weight workout with husband
1730- cook/eat dinner
1830- rest, hangout, read, phone calls
2030- prepare for bed
2130- sleeping

[Before mHBOT schedule]

0600-0630 wake to see hubby out the door
0700- back to bed
0900- coffee detox, massage
1000- out of bed to do a chore like one load of laundry or vacuum downstairs
1100-1200 lunch
1200- clean up kitchen from the morning
1300- lay down for a nap
1500- greet husband
1630- watch TV with no particular interest, just wasting time
1730- eat dinner, I rarely prepared meals because of fatigue and or pain
1800- back to couch usually wrapped in a blanket to keep warm
1900- prepare for bed
2000- sleeping for maybe 5 hours before waking for 2-3 hours.

Rarely spent time out of the house unless husband drove because it caused to much confusion and fatigue for days. I met with a friend a few times a month to sit and talk or some walking but usually ended up with sore hips and back for the next three days....ugh, I don't miss those days.
Most of my time was spent putting around the house or resting. To even lift a light 2 pound weight would give me a 3 day migraine.

Today I was doing shoulder press with 30 pounds, rows with 55 pounds, 100 kettlebell swings, 30 second plank twice and 45 pound goblet squat and this was after my 1.5 mile run. No headaches or body pain. I usually get my 10k steps not trying now along with the weight workout.

This week has been slow because I've been without a car but I've made good use cleaning walls, and other chores that never get noticed.

I think the thing I've noticed with the working out is that my body was very very out of shape. It has taken 3 months to build to my current state of function. I started in May walking the 10k steps M-F and then added beginners yoga halfway through the month to start building strength. Every two weeks I upped my schedule and added in something to challenge my body.
 

Jesse2233

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any idea how much it costs?
They're pricey, around $12k new, $6k used. Dives at a clinic are $150-200 a session

Another route is rentals, group buys, or finding someone who already has one through a support group.

My understanding is that used (assuming it's in good repair) can actually be better because they've already off-gassed for those who are chemically sensitive.

Tagging @Learner1 and @Theodore as I know they are both avid HBOT users
 

SB_1108

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I just purchased a soft shell mild hyperbaric oxygen chamber. I haven't used it yet so I can't comment on its effectivess. I was originally looking at the Solace model from Oxyhealth which was around $8k after shipping/taxes. But I also researched Newtowne Hyperbarics and ultimately decided to purchase their smallest unit for about $4k. I'm still setting it up and trying to figure out how it all works but hopefully I can provide some updates later.

It will be difficult for me to differentiate any improvements from some of my other treatment protocols that I've been working on recently - stem cells, mold avoidance and multiple gut healing supplements. I'm just throwing darts at this point!
 

voner

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i would like to hear if @Butydoc has anything to say about this or any opinions. he's a M.D. and has experience with a different kind of hbot (i think).
 

NotThisGuy

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this looks very interesting.
If I had the money I would purchase one right away.

edit:
just wondering: they say in this thread you also need an oxygen mask.
Isn't it proven that oxygen therapy makes CFS worse in the long run?
Also it increases oxidative stress... if people feel better on antioxidants it might backfire....
on the other hand it kills the pathogenes which lessens oxidative stress in the long run....


we need more discussion about this and report on one's experiences
 
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junkcrap50

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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.
 

voner

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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.
@junkcrap50,

would you tell us what specific symptoms resolved? how long did that resolution last?
 

Jesse2233

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just wondering: they say in this thread you also need an oxygen mask.
Isn't it proven that oxygen therapy makes CFS worse in the long run?
Also it increases oxidative stress... if people feel better on antioxidants it might backfire....
on the other hand it kills the pathogenes which lessens oxidative stress in the long run....
You don't need an oxygen mask although some people do supplement oxygen while undergoing HBOT. Most people on that thread did not.

I can't think of a study where oxygen therapy has been shown to make CFS worse. I do recall Dr Paul Cheney mentioning concerns over oxidative stress. My understanding is that in HBOT there is a paradoxical phenomenon where the mild oxidative stress causes the body to endogenously produce increased antioxidants such as glutathione.
 

NotThisGuy

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that guy who recovered in this thread you posted said he did supplement oxygen.

I think cheney was it who said something in the blood gets used up with oxygen (i think it was something that binds oxygen to blood cells) and so in the long run it makes cfs worse.
 

Jesse2233

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that guy who recovered in this thread you posted said he did supplement oxygen.
I missed that, thanks for catching

I think cheney was it who said something in the blood gets used up with oxygen (i think it was something that binds oxygen to blood cells) and so in the long run it makes cfs worse.
Hmm would be interested to know what that was, I've not heard that
 

Learner1

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You don't need an oxygen mask although some people do supplement oxygen while undergoing HBOT. Most people on that thread did not.

I can't think of a study where oxygen therapy has been shown to make CFS worse. I do recall Dr Paul Cheney mentioning concerns over oxidative stress. My understanding is that in HBOT there is a paradoxical phenomenon where the mild oxidative stress causes the body to endogenously produce increased antioxidants such as glutathione.
To answer some of the questions...

- the prices you quoted are about right. It's possible to rent by the month. A Russian doctor near me has a clinic with 4 chambers, and I pay about $40 a session. Found them through GroupOn...

- the soft sided 1.3 atmosphere is fine... More pressure is not necessarily better. The mask helps get the oxygen better into you. The one I have is simple, fits over my nose and mouth, elastic around back of head and little inflatable bag in front, like on an airplane.

- it has helped combat the infections I have, and gets more oxygen into my system. Stopping for awhile made my symptoms and titers worse.

- Sick people can have hypoxia. This helps. Best to exercise and get nutrients before a dive, as the dive helps things circulate better throughout the body.

- oxidative stress can happen. Its a balance. More glutathione can be produced.My doctor had me compensate for low antioxidants by increasing ALA, vit A/C/E, and dark berries.

I sleep really well in it, too and feel rested (for once) when I get out. This study says HBOT decreased symptoms:

https://www.ncbi.nlm.nih.gov/pubmed/23682549

There are other valid oxygen therapies, too. I've done UVBI, and have talked to one of Dr. Rowan's serious Lyme patients who did 10 pass ozone and swears its the only thing that's helped him. A friend with chronic EBV did 10 pass ozone, too, and has had a lot more energy since - with 10 pass you get more oxygen faster.

Attached is a paper on UVBI and one on ozone and impact on sphingolipids.
 

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