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HBOT for ME/CFS/CFIDS

Discussion in 'General Treatment' started by redrachel76, Jul 20, 2018.

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HBOT- Has a course of this treatment helped you?

  1. Yes It helped a bit

    0 vote(s)
    0.0%
  2. Yes It helped Moderately

    2 vote(s)
    20.0%
  3. Yes It helped a lot and I feel much better

    3 vote(s)
    30.0%
  4. No It made me worse

    0 vote(s)
    0.0%
  5. No, I felt no difference in symptoms, but did not worsen symptoms

    4 vote(s)
    40.0%
  6. I felt so bad on HBOT that I was forced to stop before I finished my course of treatment

    1 vote(s)
    10.0%
  1. redrachel76

    redrachel76 Senior Member

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    Please Only answer if you have finished a course of HBOT or COMPLETED a significantly large number of 20-40 treatments.

    Feeling better or worse after just 1-10 sessions does NOT count and will skew the results.

    I have put in an option for people who have worsened so much that they had to drop out.

    I am considering trying this treatment and the results would be very helpful for me and others who want to try HBOT, considering how little research there is.

    The only specific CFS study was an uncontrolled Turkish study for only 13 patients. This involved just 15 treatments.

    There was an Israeli study on 60 patients with fibromyalgia, but I was told by the head doctor of the research that he did not exclude CFS as a secondary diagnosis. This involved 40 treatments.
     
    Last edited: Jul 20, 2018
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  2. Moof

    Moof Senior Member

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    I know someone with moderate ME who improved quite a bit on this therapy, and he continues to have it – he feels it helps particularly with brain fog and pain. (I didn't fill in the survey, however, as it isn't first-hand experience.)

    EDIT: I didn't know home-based HBOT existed until other members added their experiences. Just to clarify that my friend uses a large professional chamber, which is run by a local MS charity. They offer 'dives' at different pressures, and he spent quite a few months building up to doing the deeper ones. I've only done one dive so far to check that I could cope with the noise; it's on my list of things to try again when I'm on a better level with autistic sensory overstimulation (always worse in the barbecue / gardening / playing ridiculously loud music with the windows open season!)
     
    Last edited: Jul 21, 2018
  3. Learner1

    Learner1 Forum Support Assistant

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    I've been doing 2-3 60-70 minute sessions weekly for about 18 months.

    I wouldn't say its a cure in itself, but has been a nice complement to anti-infection treatments, IVIG and a robust nutrient protocol. Hypoxic is a part of many patients' illness, and getting the oxygen in is helpful. It also helps nutrients get into the tissues.
     
  4. Wayne

    Wayne Senior Member

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    Hi @Learner1, are you using an at home mHBOT unit? Or the higher pressure professional ones. -- Thanks!​
     
  5. Learner1

    Learner1 Forum Support Assistant

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    It's a 1.4 atm soft sided one. More would give me too much oxidative stress. This is plenty.
     
  6. used_to_race

    used_to_race

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    I am posting this from a 1.3atm home HBOT which I have been using 6 times a week on average for a couple months now. I'm putting that it has not made a difference either way in terms of symptoms, but I can't say for sure because I am on multiple treatments. I read a lot of research before taking the plunge on this machine and I think there is something to it, but it can take a lot longer than 40 sessions. I have found one or two other things to be beneficial, and I have never been more than moderately ill. For me, committing to an hour a day has been really tough along with full-time work and I probably wouldn't recommend it unless you have time to kill (which I know many people on here do).

    You'd also have to consider the stress of going back and forth between a clinic daily if you don't purchase/rent a machine.
     
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  7. Runner5

    Runner5 Senior Member

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    PNW
    What is HBOT
     
  8. Learner1

    Learner1 Forum Support Assistant

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    Pacific Northwest
  9. Wayne

    Wayne Senior Member

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    I did about 12-13 sessions a couple months ago. They significantly improved my mood and sense of well being, but I don't recall any clear indications they significantly improved my overall health in that short time. However, my experiences did tell me that ongoing and regular sessions would probably help considerably longer term.
     
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  10. Silencio

    Silencio Senior Member

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    I did 37 sessions back to back intensive hbot at 2.4ata in a 2.5 month period. It did nothing at all for me, and I’m quite dubious now of the claims that it helps actual ME patients. It was a huge effort and expense for myself and my caregiver.
     
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  11. redrachel76

    redrachel76 Senior Member

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    I am just tagging people who mentioned trying HBOT in past forum posts. I would be great if they could say whether it helped them or not in the poll @cigana @SB_1108 @Jesse2233
     
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  12. Jenny

    Jenny Senior Member

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    I haven’t answered the poll as my experience doesn’t really fit. I felt a lot better after about 16 treatments, going 4 or 5 times a week. This lasted about 5 weeks. Then I got flu and couldn’t go for a while but then continued, mainly twice a week. During this time I felt I was slightly better, though not as good as in the early weeks. At least I didn’t have a major crash.

    Then, 2 days after the 53rd treatment, I went into a major relapse. I’ve been mostly bedridden for 5 weeks, and so haven’t been able to go to the centre.

    Either it’s not working for me at all, and the good period early on was just a random remission (I do get these), or it only works if I have treatments 4 or 5 times a week. That would be pretty impossible to continue for more than a few weeks.

    Hope this is helpful. Good luck!
     
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  13. redrachel76

    redrachel76 Senior Member

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    The early improvement sounds like a random remission. If it was really helping then that massive crash after your 53rd treatment would not have happened, unless you had really overdone things outside the chamber. :( Thank you for telling us.
     
    Jenny likes this.
  14. HGParrot

    HGParrot

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    I will have been going for 3 years in September.

    The first few months were sporadic as I struggled to get there and had to stop for a few weeks due to a cold, I noticed an increase in symptoms when I couldn't go. I then built up from once to twice a week as my symptoms improved (at 24' chamber at MS Centre), about a year ago I tried increasing from 24' to 33', I had initially been hesitant to do this due to ear pain but as I had been going regularly and potentially other changes to things like diet & environment my ears had got better/used to it,

    I felt no difference in my ears pain wise when trying 33' so over the next couple of months did one 24' and one 33' then eventually both 33' I wasn't particularly expecting to notice a difference between 24' and 33' but I did notice some further improvement. Over this past winter I trialed increasing to 3 times a week to see if it would help reduce the usual decline in symptoms I see Sept-May time each year.

    I found if anything it made me worse as the energy to get there wasn't worth the benefit of an extra session (although I only did a few weeks of this, had I stuck at it it may have helped but I decided to go back to what I knew worked). What is right for my body is twice a week (Mon & Thurs) for an hour at 33' (circa 90 mins in tank inc getting to pressure and back to normal pressure at end). Once a week does not give this same benefit and I notice the difference in my symptoms if i have to skip a session.

    When I initially started it was a real struggle to get there, I could only manage once a week at 4pm, and not even every week. I was then able to manage twice a week some weeks getting to an additional session on another day at 2:30 but often that was too early. It was a good 6-9 months before I really felt any better and it was a very gradual process.

    I have moved from 10 to 20 on Dr Bell's severity scale, which is massive in terms of quality of life. I don't have to be in darkened room much of time, when laid in bed I don't always have to be in full rest mode and can manage things like, going online, doing (the easier) puzzles in a puzzle book, listening to music (occasionally and only certain music), hold conversations, watching a tv show or two on my phone for parts of the day.

    I get out the house twice a week to HBOT, once or twice a week to massage and last year was managing a few days out over summer, this year my bf is ill and using up my energy so have declined but not to the same extent as before. I have managed a couple of social things and 2 HBOT sessions after these I felt much better, it was a really marked difference of me almost not going as didn't think I'd have the energy to get through it to coming hope and doing a bit of gentle gardening. Often it's not so apparent, going will make me tired initially and then later than eve I perk up.

    I tried a lot of things before finding something that helped me, I don't find 100% oxygen alone helps or the SoeMac device it has to be hyperbaric oxygen. I've seen people mention mixed results with the home ones, my understanding is they don't get to the same pressure which could be the cause of the discrepancy.

    The studies done are not realistic/relatable to the real world. A severe housebound patient, who spends most of their time in bed is not going to be well enough to do such an intense course of inital treatment, plus many centres such as the one I go to are not even open 5 days a week.

    I find it uncomfortable sat in the tank for 90min, my hip usually ceases up, often I am counting down for it to be over, it has been pretty hot & sticking recently especially if there are 6 or 7 of you in there but it's more than worth it.

    I would say it wasn't until I'd done circa 50 sessions on a weekly basis and able to sustain twice a week that I felt it was worth it, up until that point I was more giving it a go and noticing slight improvements but not sure if the energy used to get there and do the sessions was balancing out the benefit and if pushing myself to get there would cause a crash.

    I'm far from well but it's given me enough quality of life back to make me happier and able to engage in the world a little again. I feel I have plataued and am unlikely to see any further improvement but I have been maintaining around the same sort of level and know I decline if I don't go so am happy it's making a difference for me.

    As with everything it doesn't work for everyone and I was lucky to finally find something that helped me.
     
    Last edited by a moderator: Jul 23, 2018
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  15. HGParrot

    HGParrot

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    Bit of background on my ME/CFS as may help for comparison of people it helps vs those it doesn't.

    I was diagnosed circa 2011/12 in my late 20s with CFS, in the previous year I had been over doing things at work, had 3-4 trips to India which I had vaccinations for initially, finding it difficult to sustain, had a work/sleep balance minus the life much of the time in months leading to crash, struggling to get to work on time, getting in and going to bed, sleeping most of the weekend, had issues with insomnia prior to this.

    So thought was just catching up on months of missed sleep after a couple of booster shots had a trip to India for work where I had to miss the first day as felt awful, the most tired I could remember being, never really got over it then under a month later I left work early and went to bed for 4 days from which I have never fully recovered, GP suspected CFS and few months later was diagnosed via process of elimination, I tried to go back to work after a few months via extended phased return, managed to sustain reduced hours for almost a year (work/sleep) when more moderate symptoms until I crashed big time, lost job due to health and remained severe until HBOT got me from severe to moderate-severe.

    With hindsight my symptoms appear to have started when I was 15 and had glandular fever type symptoms due to active CMV virus, I got well enough to go to college/uni and study horses but whilst there at 19 had a flare up of symptoms, blood tests fine etc then seemed to pass, when I finished uni and tried to work I found I wasn't able to do the work I had trained for, just didn't have the energy which at the time I put down to age, chose a different path but had to stop masters due to what I now recognise as brain fog plus fatigue.

    I probably had mild symptoms and had pushed myself past what I could maintain, changed path again and eventually ended up working in an office doing a job I mainly enjoyed, was excelling and I suspect symptoms triggered by vaccinations, then boosters, and generally pushing myself. I don't have active CMV antibodies. Some of my initial improvement was down to stopping work and fully concentrating all of my energy to my health, plus accepting/realising just how ill I was, but this was a few months before I really started the regular HBOT.

    I've done things like eliminated certain foods/played around with supplements until I found ones that contined to help, sought help from naturopath but any improvements from these which happened after I started HBOT can be identified as seperate improvements that add into the picture for certain symptoms not the overall improvement to my health, namely fatigue that the HBOT gives.

    I don't think my symptoms have ever really gone away since I was 15, I just think that they were often mild and triggered by certain events, swollen glands to some degree has been my norm since then, getting worse sporadically. Symptoms potentially started a little earlier as I remember the TB tester making me ill (so ill I missed the vaccine) but around this time I got tonsillitis a lot (they were removed at 15 as got really bad after the glandular fever type illness) so it could have been more linked to that.

    I don't remember exactly how ill I was at 15 to compare the levels of fatigue post CMV infection but my mum has said I was really unwell, it's all a bit of a blur to me. I also have hypermobility syndrome, IBS symptoms since 20ish (managed through diet), depression in past but not currently, was fit & healthy in general in-between flare ups until 2011.
     
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  16. voner

    voner Senior Member

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    @HGParrot,

    Thanks for your posts. what were/are your specific syptoms and which ones have improved? Do you have autonomic system issues? Pain issues? Hypersensitivities? etc.
     
  17. HGParrot

    HGParrot

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    Hi @voner

    The main one to improve is fatigue (physical & mental), pain wise I can't say the HBOT has definitely affected this as being doing other things related to the improvement there, it does have a holistic improvement on pain in so much as more mobile and being laid for long periods increases my pain so being able to move reduces that but I couldn't say the HBOT directly affects it.

    Physical: pre treatment I wasn't able to get around the house without getting out of breath, struggled with meals, getting to bathroom, often ended up laid on floor somewhere in house as couldn't make it to where I needed to go, usually had to have a sit on the stairs, things like lifting fork to mouth were a massive effort. All i could really do was lay in a darkened room, napped a lot, on a better day I might be able to sit up in bed a little and once a week most weeks I'd have saved enough energy for a small food shop at Aldi/co-op/somewhere small, then spend the next couple of days or so putting stuff away as i could/just leave in bags by the door if wasn't frozen. I'd have to sleep after having a shower, eating, any real exertion, I'd often go without food/water for much of the day as didn't have energy to get any. Now I can sit for 90min in Oxygen tank twice a week, drive myself there and back (5 or so min drive), get to massage appointments twice a week inc drive (10-15min drive), I gave up on food shop as do that online now, I've been able to take my friends dogs for a walk to the park occasionally (with stops) for 30mins-an hour (although a lot of that is me sat while they do their thing). Last year I managed a couple of days here and there where I drove approx 30mins-hour, had a day out (mainly in wheelchair) and drove back. I find PEM is not always as extreme, in so much as not so severe for so long, get back to my baseline sooner, I still get out of breath coming upstairs and on days after I've done a bit too much but it's not as constant as it was. I managed to dance at my mum's wedding last year, I've managed to stand for a bit at odd gig here and there over past couple of years (I had stopped going all together, then managed odd one seated), I've had a decline this year down to my by being ill and staying with me much of the time which is quite detrimental to my health but at xmas I felt a lot better and did an hour drive to see my dad, stay for a couple of days with ability to interact whilst there and drive back. I felt so good I thought I might be able to do an hour or two volunteering somewhere each month, would see my friends & family more etc but life had other ideas and I'm no longer as well as that as having to use energy elsewhere.
    I can actually function some mornings now. A few months back I managed to go out to the garden to meditate and do some stretches before lunch time. I had hoped to get into some gentle yoga but I wasn't well enough for that, I do manage to do sporadically maybe every month or so, including some mantras when sat up, compared to only managing some meditiation when laid in bed.

    Mental: I couldn't listen to music, audiobooks, watch tv, do anything much on smartphone, do any puzzles, ask me a simple question and it overloaded me, found it difficult to comprehend things I didn't understand and if I tried I got so tired I would have to nap, i couldn't even work out an online shop knowing if I could it would save my physical energy of going to the store, unable to read books/articles online, on better days I'd interact online via things like Facebook to help with isolation, I'd always make mistakes like put a pan on with no food in it, stir boiling water with my hand, I needed tick lists to make sure I'd taken my medication, supplements etc. Now I am sat writting this, can watch 40min tv shows on my phone, sometimes two in a row provided I'm careful with what I watch as some are too overloading still and send mw to sleep, can manage some radio shows although others still send me to sleep, listen to music occasionally, better with answering questions but some still push me over, I can do some puzzles ie crossword, puzzler books etc here and there, have a couple of card games on my phone, can have a conversation with my mum for 40mins rather than just mumbling down the phone I'm tired and can't speak or ignoring it all together. I still forget things but not to same extent (no trying to stir boiling water for a while). I've been able to read some articles online.

    Misc: I used to be nauseous every morning till at least 11, but that's more sporadic now and not as intense. I still get light-headed on standing, wouldn't say there has been much change to that but my vision doesn't tend do do so black. I have slight tremors in my hands, I don't seem to throw things over my hand so much (this may be more related to dystonia than ME/CFS). No difference in my ability to tolerate flashing lights, they still make me feel ill, don't drive at night due to this. I used to get numbness/pins & needles in arms/hands/feet this has improved but I couldn't say it was definitely down to HBOT in itself. I don't seem to choke on my own saliva as often. I still drink a lot of water (3l a day average), doesn't seem to have affected that. No change to any food intolerances, these have increased but not necessarily linked to HBOT.
    I would say I'm a bit better with temperature changes as recent heatwave has not affected me as much as previous extremes in temp, again couldn't be certain that is down to HBOT in itself.

    ..... brain given up for now will add more at a later date
     
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  18. cigana

    cigana Senior Member

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    Hi redrachel,
    It's too early to say yet so I won't answer the poll (see my previous post about having to take a break from it).
     

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