Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

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

Discussion in 'General Treatment' started by Jesse2233, Sep 4, 2017.

  1. junkcrap50

    junkcrap50 Senior Member

    Messages:
    227
    Likes:
    308
    I don't mean to scare you or make you second guess yourself, but I worry about the pressure they're using. Seems to high based on all the other research. Dr. Harch in NOLA who's pioneered HBOT therapy for head injuries, autism, and chronic illnesses prefers 1.5ATA and says better results can be achieved at that pressure. Higher pressures are used for killing Lyme and for typical HBOT uses like wound healing and diving accidents.

    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.

    On the other hand, I have met an integrative doctor who treats chronic illnesses with high HBOT pressure. So, who knows.
     
  2. Silencio

    Silencio Senior Member

    Messages:
    255
    Likes:
    979
    Hi @junkcrap50, yeah it is deep, and obv a lot deeper than mhbot. There are a couple people in the Facebook group who have tried that depth and been ok. Some people say “deeper is better” in that group although most of them were still referring to 33ft at an MS clinic, not 45. I am a bit worried about it, but I’m here now.. I’ll give it a shot and see what happens. I’m only going to pay for one session tomorrow so I can see how it goes.

    Thanks for the warning tho..
     
  3. ErdemX

    ErdemX Senior Member

    Messages:
    113
    Likes:
    239
    Istanbul
    @Silencio I have 40 sessions of experience with HBOT last year at 2.4 ATA. At that time my CFS severity was just like you. As I mentioned earlier, after a couple of sessions I was hit by a huge fatigue wave and needed to rest with zero energy all day without doing anything. But after 2-3 weeks it went away and never came back. After 40 sessions I was a bit better. Also I must say that I wish I have done more than 40 sessions before stopping, because for some people what makes the treatment works is long repetitions.
     
    Silencio likes this.
  4. Silencio

    Silencio Senior Member

    Messages:
    255
    Likes:
    979
    Thanks @edermx.. hoping I manage like you! I am prepared to feel worse in the first few weeks based on other feedback too. I may have to just go slower if I need to than every day.
     
    ErdemX likes this.
  5. junkcrap50

    junkcrap50 Senior Member

    Messages:
    227
    Likes:
    308
    No problem. It may still be alright and work.

    Here are some more anecdotal stories. I've received 80 HBOT dives at Dr. Harch's clinic and it's been the single most important effective thing for my CFS/ME (I have a textbook case - viral infection started it, cognitive dysfunction, PEM, etc. - thought my CFS has always been more cognitive than physical). At dive about 76 I felt "cured" and literally fantastic. I felt I had my "swagger" back - like I had taken the pills from the movie Limitless. Unfortunately, I did 3 more dives, noticing my joint pain first and headaches later. My "cure" faded away and I believe I became oxygen toxic or had too much oxidation, going past the point of positive returns.

    During my 80 dives, I slowly some incremental progress, punctuated with mini-plateaus. After dive #1, I noticed a benefit right away - my parents and doctor also noticed a benefit. I felt like a weight was lifted off my brain or a cloud disappeared. My irritibility was much decreased and I had a bit of my personality return. It basically felt like I had less brain inflammation and some more brain perfusion. Dr. Harch said that, if HBOT works for them, most people notice a small benefit on their first dive, however but not everyone who improves does. So if no benefit isn't seen after dive #1, one may still see benefit from HBOT.

    During my treatment, a parent of mine, who also has textbook CFS and textbook physical PEM (though doesn't have as many cognitive symptoms besides ADD), also did treatment along side me. He/she did NOT notice a benefit from HBOT after dive #1 and didn't notice any benefit until late into 80 dives - not until dive # sometime in the 60s. So he/she had no response for 60 dives and then huge response after 60 some dives. His/her benefits lasted longer than mine and was able to go off all his/her medication. So unfortunately, it took a lot of dives and a lot of money to see a benefit for my parent. Don't know why, maybe it was how our CFS differed slightly.

    Several years later, the same parent did another round of many HBOT dives, however, this time for an infection and wound-healing in his/her foot. This was done at 2.4ATA or thereabouts and numbered in the 20s. We were excited he/she was eligible for HBOT and that insurance paid. But were surprised that he/she noticed no improvement or difference in his CFS. It was effective and curative for his/her infection and wound.

    So, it was interesting that the higher pressure didn't help that time. But I can't be sure if it was due to the dive depth or because he/she was a slow/very late HBOT responder. It's a toss up.
     
    Abha, ErdemX, sb4 and 2 others like this.
  6. MartinK

    MartinK

    Messages:
    65
    Likes:
    91
    Hi all!
    Im really happy - last week I was started HBOT after long mailing with our hospital...
    This chamber is for 4 peoples - only sitting (that is really hard for me with my OI and bad back) but I'm trying hard to prove it! We go down to 14 meters and one relation is for 120 minutes.

    I feel immediately after HBOT some changes - brain fog i gone, muscles pain is smaller and inflammation too. Fatigue is better...really good feelings!
    But, fact is...when I'll get home, after 1 - 2 hours after HBOT I feel really tired, I want a lot of sleep, its like a PEM...but little bit different.
    Someone had same problems after first HBOTs?
    I'm little bit scared from this changes! Any help, experience?

    Bath in epsom salt help me a lot, when this PEM coming after HBOT session.

    I would like to try so much HBOT, when I lie down! Now I dont know, if this short, but big PEMs and drowsiness are from HBOT or from my OI - exertion, when Im sitting in chamber...

    Is possible that this worsening after HBOT make detox process or killing Lyme and viruses?
    I hope so a lot!!!

    HBOT is my way with herbs from Cowden, because KDM treatment with "persister" protocol was too scared and dangerous (KDM himself tell me this), I want to try everything but I do not want to destroy many atb (I was on many protocols for Lyme in past...)

    thanks all for some points!
    best regards and brighter days for everyone!

    Martin
     
    aaron_c likes this.
  7. Silencio

    Silencio Senior Member

    Messages:
    255
    Likes:
    979
    Sharing an update..
    I’ve done 31 sessions of 2.4 ata hbot so far, over a 2.5 month period. Unfortunately I haven’t seen any results. I still have all my same symptoms, days of bad PEM, headaches, constant cognitive fog, weakness and fatigue etc. Am quite disappointed this didn’t work for me. I will do 5 more sessions but I think that will be it for me.

    Does anyone else have an update who had seen results with hbot? Did they stick?
     
  8. MartinK

    MartinK

    Messages:
    65
    Likes:
    91
    Hi!
    Im after 10 sessions in 2,4 ATA too!
    And I feel little bit better! PEMs are gone - I make little activity on the weekend and without PEM - Im so happy!
    But, OI is still the same.
    I think, its too early to say more in my cause...
    But I see results...good results...

    Next week I start HBOT with a deck chair - this help me with muscle pain from my OI I hope!

    Martin
     
    aaron_c, JES, cigana and 1 other person like this.
  9. Silencio

    Silencio Senior Member

    Messages:
    255
    Likes:
    979
    sb4 likes this.
  10. Jenny

    Jenny Senior Member

    Messages:
    1,372
    Likes:
    535
    Dorset
    I've done about 40 treatments now, mostly at 33ft. I felt a lot better after the 14th treatment and this lasted several weeks. In January I got flu and the ME symptoms returned to some extent, but not too badly. But the flu meant I had a few weeks off oxygen. In Feb I got back to it and I still go once or twice a week. I'm not quite as bad as I was last year but the improvement I had over Xmas hasn't returned.

    Either it was just coincidence- my symptoms fluctuate a lot anyway, or I need to have O2 4 or 5 times a week. That would be very difficult as the centre is an hour and a half away. I guess there's a possibility that O2 has a cumulative
    effect. So I'm carrying on for a while going once or twice a week.
     
    cigana, sb4 and Silencio like this.
  11. Silencio

    Silencio Senior Member

    Messages:
    255
    Likes:
    979
    Thanks Jenny.. yes it’s difficult to know with fluctuating symptoms. I never had a noticeable improvement in symptoms even with 4 to 5 treatments a week, will be doing my 35th session tomorrow, so I think I will probably give up then. There are not enough patients recounting improvement that only happens after 40 sessions to convince me to keep going. From my basic analysis of the anecdotal reports. it seems the ones who do find it beneficial know either immediately or at least within 15 to 25 sessions. Keep us updated here as to how you get on.
     
  12. used_to_race

    used_to_race

    Messages:
    37
    Likes:
    67
    Just wanted to throw my hat in the ring with all of you here... After trying out 5 sessions of mHBOT at a local center in Southern California, I have rented a machine from a contact elsewhere in the US. The machine I got was a Vitaeris 320 (1.3 ata), and I've had it set up in my apartment for a week now. I've been doing daily sessions at around 60-75 mins per session. I'm typically mild but occasionally (and more frequently in recent months) moderate, and can go over my specific symptoms in more detail if anyone would like to discuss, but I've noticed a little bit of improvement almost across the board since starting. Could be due to placebo effect at this point, but I plan to continue with daily sessions for at least 2 months before considering whether to stop the treatment.

    Incidentally, I looked up the part number on the pressure control valves that my chamber came with, and it looks like the valve company makes parts with the same physical dimensions that open at different pressures. So presumably I could easily modify the chamber to be 1.4 ata, 1.5 ata, or even higher. Currently I'm thinking of sticking with the 1.3 ata, but in the future I may go ahead and swap the valves. I would imagine the zippers and other parts are rated to at least 1.5 ata, but I may check with some folks more knowledgeable than me. The main thing is that there doesn't appear to be a huge difference clinically between 1.3 and 1.5.
     
    xrayspex, Silencio, sb4 and 1 other person like this.
  13. cigana

    cigana Senior Member

    Messages:
    995
    Likes:
    825
    UK
    I tried 2 months at 1.3 ATA with an oxygen rebreather. After about 6 weeks, I had two short periods (an hour or so) where I definitely had much improved stamina, and I'm certain it was due to the mHBOT. This wasn't sustained, but I wanted to carry on long term. Then I came down with chronic sinusitis, which I've never had before, so I decided to stop the mHBOT/oxygen in case that was the cause. I might consider starting again if the sinusitis ever clears up (it's been months now and it's not going away).
     
    xrayspex, Silencio and sb4 like this.
  14. xrayspex

    xrayspex Senior Member

    Messages:
    1,011
    Likes:
    270
    u.s.a.
    sorry to hear that!
    any thoughts on what the mechanism would be to cause sinusitis?
     
  15. cigana

    cigana Senior Member

    Messages:
    995
    Likes:
    825
    UK
    The sinusitis began after I had flu with sinus symptoms, so I don't think the mHBOT caused it, but it may have made it harder to clear, as the air is quite dry when wearing a rebreather. I did also wonder if exposing the sinuses to more oxygen could change the state of the sinus microbiome (which has been linked to chronic sinusitis).
    But this is all conjecture, maybe the sinusitis and mHBOT is all coincidental. I haven't heard of this problem with any other mHBOT users.
     

See more popular forum discussions.

Share This Page