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

[Jesse2233]

thanks @Learner1

remind me how many dives you've done and how often you do them?

 

[Jesse2233]

From a poster on the Lyme thread who no longer suffers from PEM

Update:
Starting in May 2016 I worked up to 1 hr/day with the mask, taking 149 days. I am now at 237 days and have had great improvement. I have lots of energy, no longer suffer post exertional malaise, and feel happy nearly all the time. My cortisol levels are normal for the first time in 17 years! I never did the antibiotics or other Rxs because of chemical sensitivity, and am seeing some improvement there too. I am still severely underweight and my gut bothers me...no changes there, despite all my hard work.
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/125201/22?

 

[Jesse2233]

Another nice one

mofarmerswife
Junior Member
Member # 48102 posted 12-17-2016 07:56 PM
Hello, all -

It has been quite some time since I last posted here, but Phoiph asked if I would share the update for my husband, Mofarmer.

Mofarmer has been ill with tick disease for 12-14 years - but has really gone downhill healthwise in the last 3 years.

He was finally diagnosed with Masters disease (the Midwest equivalent of Lyme) in September 2015. After rounds of antibiotics (with very little gain), we decided to go the mild hyperbaric route, with coaching from Phoiph.

Mofarmer has now completed 138 dives (on his way to 730 - the total for 2 solid years of diving), and is definitely making progress.

One encouraging sign - the slow but steady return of his personality. Mofarmer was an energetic, full of life, quick to laugh person before the tick disease robbed him of his ability to think and interact well with others. Over the years, he drifted into "yes" and "no" as his primary conversation, as he was self-conscious about slurring his words, or trying to talk through the brain fog (with no success).

This year, for the first in several, he is excited and pleased about Christmas, participating in Christmas activities and thinking about/buying gifts. As his caregiver, I feel like I'm having my Christmas right now just seeing him come back to life and to me.

We give the hyperbaric chamber all the credit - and it is truly creating results! At a recent doctor visit, we were astonished when his red blood count, white blood count and platelets all came back in the NORMAL range! Literally, it has been years since that last occurred - he is definitely healing internally.

Phoiph asked me to share this good news with you - because I read this forum every day, and search for things that cheer me up on bad days, and encourage us to continue on the long path. There is hope, and there can be progress.

Mofarmer and I wish you all the very best for Christmas, and the hope of "BETTER!" for us all for 2017!

MofarmerswifePosts: 3 | From Missouri | Registered: May 2016 | IP: Logged |

 

[Jesse2233]

And one more...

I love it very much, at the same time I’m still very sick, but I'm slowly making progress.

I'm about 15-20% better than I was before I started diving.
When I skip 3-4 days I feel more tired and weak.

I couldn’t tolerate most of foods, meds, herbs and supplements. That has improved a lot thanks to mhbot!

Mhbot has been the only therapy that stopped my ongoing getting worse year after year. By the time I started I was more dead than alive.

I’m mostly bedbound for almost 10 years but now I'm able to exercise. I ramped up from 30 seconds to now 15 minutes every day! (hometrainer and light weights)

[ 05-03-2017, 08:12 AM: Message edited by: Survivorgirl1 ]

 

[Learner1]

thanks @Learner1

remind me how many dives you've done and how often you do them?

I've probably done 90-100 and I go 2-3 times a week for 60-80 minutes.

The stories you posted track with what I've heard elsewhere. Its helpful especially if there's an infectious agent that the oxygen can go after, an injury, or other condition causing hypoxia.

 

[Jesse2233]

hey @Cort

now that you're back I wanted to ask if you'd heard of any patients seeing benefit from long term mHBOT.

I know you correspond with many people so I thought you might know

 

[gettinbetter]

This is certainly exciting news

finding someone who already has one through a support group.

Anyone in the San Francisco Bay Area?

I pay about $40 a session. Found them through GroupOn...

You are in the Pacific Northwest where?

 

[Cort]

hey @Cort

now that you're back I wanted to ask if you'd heard of any patients seeing benefit from long term mHBOT.

I know you correspond with many people so I thought you might know

Hi Jesse

I did a blog on HBOT. One small study showed that it could have excellent benefits for fibromyalgia so we have to be aware of that. It emanated from Israel I believe.

I did a blog on it but according the rules of PR Forums I can't post a link to it. If you search Google for HBOT and Fibromyalgia it will come up as New Age Fluff or something or other. I'm sure that some people offered their comments

Good luck!

 

[Jesse2233]

thanks @Cort I'll check out

love all the blogs and interviews that you do, really looking forward to the Naviaux one

 

[Jesse2233]

The more I research the more it seems HBOT is a promising modality for ME/CFS

HBOT...

• Improves mitochondrial function (1) (2)
  
• Increases blood flow to the brain and other organs (3) (4)
  
• Awakens sleeping neurons and helps heal neurological damage (5) (6)
  
• Has anti-viral and anti-bacterial affects (7) (8)
  
• Reduces the effects of autoimmunity (9) (10)
  
  
• And of course there are these studies on the use of HBOT for fibromyalgia, CFS/ME, and Lyme (11) (12) (13) (14)

I'd be interested to read the thoughts of @Woolie on the brain HBOT stuides, and @Jonathan Edwards on the immunological ones

 

[Hanna]

I am going to ask certainly a silly question here : has ozone therapy comparative positive effects on ME/CFS than HBOT ?
(though HBOT use for fibro study comes from Israel, there is very little chance to get this therapy here).

 

[Learner1]

This is certainly exciting news

Anyone in the San Francisco Bay Area?


You are in the Pacific Northwest where?

Seattle

 

[Learner1]

I am going to ask certainly a silly question here : has ozone therapy comparative positive effects on ME/CFS than HBOT ?
(though HBOT use for fibro study comes from Israel, there is very little chance to get this therapy here).

It's a good question. It's the quantity and intensity of the introduction of oxygen into the body that differs. While oxidative stress is desirable on infective agents, a competent doctor will be monitoring for excessive oxidative stress and compensating.

Ozone can be introduced simply in an IV bag with saline with a fast flow rate. I haven't felt any ill effects from it.

10 Pass ozone involves pulling the blood out of the body, introducing ozone, and putting it back in the body, in a closed loop system.I know 2 people who have done multiple sessions over a few weeks with great benefit, and say it helped them more than anything else, one for Lyme and the other for Epstein Barr. The 2 machines are from Germany.

There are also other modalities, discussed here, though I've heard anecdotally that hydrogen peroxide IVs are hard on veins, with the other modalities being less so

http://www.oxygenhealingtherapies.com/ozone_oxygen_therapies.html

Here's the literature I could find. There are no perfect studies, but you can get an idea of the benefits::

https://www.ncbi.nlm.nih.gov/pubmed/21198421

http://www.blackwellpublishing.com/aphmeeting/abstract.asp?MeetingID=778&id=94523

http://www.sciencedirect.com/science/article/pii/S180886941630129X

http://www.medsci.org/v08p0048.htm

http://o2exercise.com/hyperbaric-oxygen-therapy-vs-ewot-and-improving-stem-cells/

 

[Hanna]

Thanks a lot @Learner1 , I am going to "dive" in the stuff you posted .
Anyone tried both and could give some their impression ?

 

[Learner1]

Thanks a lot @Learner1 , I am going to "dive" in the stuff you posted .
Anyone tried both and could give some their impression ?

You may also find this interesting. I've had it with ozone, and the effect is stronger than just ozone or HBOT, but less than 10 Pass:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4783265/

 

[voner]

@Hanna,

i've researched Hbot a couple times and it's intriguing to me, but the cost factor is way too expensive for me. here's a couple links about that paper that Cort mentioned. The researchers in Israel use a hard chambered, high-pressure Hbot, while most alternative practitioners here in the United States use soft-sided, lower pressure hBot. I think the home units that are sold are low pressure Hbot.

Here is the paper that Cort mentioned:

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0127012

here is a link to the Hbot center in Isreal that is mentioned.

http://www.assafh.org/sites/en/clinic/hifrbaric/pages/default.aspx

good luck on your explorations. I , for one, would love to hear of your experiences...

I would still love to hear input from @Butydoc.

 

[Butydoc]

@Hanna,

i've researched Hbot a couple times and it's intriguing to me, but the cost factor is way too expensive for me. here's a couple links about that paper that Cort mentioned. The researchers in Israel use a hard chambered, high-pressure Hbot, while most alternative practitioners here in the United States use soft-sided, lower pressure hBot. I think the home units that are sold are low pressure Hbot.

Here is the paper that Cort mentioned:

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0127012

here is a link to the Hbot center in Isreal that is mentioned.

http://www.assafh.org/sites/en/clinic/hifrbaric/pages/default.aspx

good luck on your explorations. I , for one, would love to hear of your experiences...

I would still love to hear input from @Butydoc.

Hi Voner,

It has been some time since I was a consultant for HBO. We had 7 or eight hard chamber mostly used for wound care where I was the director of the program. At that time, low pressure chambers couldn't deliver they same levels of oxygen content that a chamber that operates at 2ATM using 100 O2 could deliver. No idea how that translate into treatment for ME/CFS.

Gary

 

[A.B.]

The more I research the more it seems HBOT is a promising modality for ME/CFS

• And of course there are these studies on the use of HBOT for fibromyalgia, CFS/ME, and Lyme (11) (12) (13) (14)

I looked at treatment studies. Paper 11 talks about how double blinding in a HBOT trial is tricky, because patients notice increased air pressure, and pressurized air will substanially increase tissue oxygen levels by itself. The authors decided to do SPECT scans with blinded assessment to add some objectivity to the other subjective outcomes. They say there is good agreement between the SPECT and the questionnaires. I can't interpret SPECT scans so it's a bit difficult to interpret this paper. The authors acknowledge the problem with blinding and provide adequate justification for lack of blinding. This paper is about fibromyalgia though.

In paper 12 there is no blinding and it's all subjective outcomes. There is no control group or attempt to reduce bias (as far as I can tell from the abstract). I can't find this on sci-hub. They do claim clear positive results but it doesn't mean much. It's about ME/CFS.

Paper 13 also lacks blinding and has subjective outcomes plus a reaction time test. After 2 hours of treatment every day for a week, the effects on subjective outcomes were very small and only a few were (barely) statistically significant. There was no statistically significant improvement on a reaction time test. It's about ME/CFS.

Paper 14 doesn't adequately report its results or describe its methodology and comes across as junk quality paper. It's also not on sci-hub. It's about chronic lyme.

I quickly skimmed these papers so my analysis could be flawed. I don't think there is much to get excited about. Maybe paper 11 is reliable but that depends on the SPECT scan reliability (would not put much hope in that either). Paper 13 is pretty much a null result.

I won't lose sleep over me not getting HBOT treatment, that's for sure.

 

[Jesse2233]

Thanks for taking a look @A.B. always good to have your thoughtful analysis.

Your concerns on the treatment studies are valid, and given the blinding issues and low funding into both HBOT and ME research, it may be awhile before we have anything more comprehensive. I agree that it was nice to have the SPECT scans included in the fibromyalgia study, and wish the others had them as well.

To me these treatment studies collectively imply "research is promising but not robust." My interest is increased when looking at the broader context of patient reports and the other HBOT studies on its biochemical effects.

It's also worth noting that the studies were short term. The anecdotal stories are much longer term and have even better outcomes.

 

[Jesse2233]

From someone in an HBOT Facebook group

Dare i dream? This morning i am daring. I woke up this morning and before i could help myself i trotted downstairs, kissed hubby good morning and made my own green tea. I could not quite describe how i felt and then I realised that long long ago this is how i felt pre ME and fibromyalgia.
I am a wheel chair user when i go out normally, hubby does all the cooking, cleaning, laundry, help me with personal grooming, chauffeur me around to treatments etc, in short i do very little for myself but rest and do stuff on my iPad whilst lying down. Hubby took me for up to now for 4 hyperbaric oxygen treatments [HBOT] at a MS centre half an hour from here. I thought just the going out so much will completely floor me but instead i feel as light as a feather and raring to go and do things. Yesterday after treatment i went and had lunch with a friend! Today i threatened hubby that i am going to take my kitchen back and start cooking again and i realised i really get so much better it going to cause a lot of adaption in our relationship again. He is retired so being my carer keeps him busy so what will he do when i can take care of us again?
It's still early days with the HBOT treatment and this might just be a temporary improvement but oh the joys of feeling just a little bit like the pre ME me and daring to dream to have a full life again. I have to go now. Want to check for cruises around the world!!