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

Jesse2233

Senior Member
Messages
1,942
Likes
5,364
Location
Southern California
Another successful Lymenet user
Jolley
Member
Member # 46454
posted 09-07-2017 07:12 PM

Phoiph thank you! I'm feeling symptom free mostly and have for quite awhile. My doctor suggested cutting back to diving 2-3 days a week. I feel torn as part of me wants to dive two full years and another part of me is so ready to be done with the time commitment of daily dives. How do you start cutting back?Posts: 57 | From Washington | Registered: Aug 2015 | IP: Logged |
 

Jesse2233

Senior Member
Messages
1,942
Likes
5,364
Location
Southern California
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
Nice find Steve! Good luck and let us know how you do!
 

Jesse2233

Senior Member
Messages
1,942
Likes
5,364
Location
Southern California
From a ME/CFS patient on MyPatientMatch

One hour in a hyperbaric chamber at 1.3 atm once or twice a week has done more to improve my health than anything I've tried in almost 30 years of ME/CFS.
Later he answers a question with more details

>1 yr ago by stbrown
Hi Cazcat,

Sorry but I didn't see you post until now, 7 months later. It definitely is not a coincidence as I noticed a good feeling in my head towards the end of the treatment and 20 years of monthly crashes disappeared. I've still been sensitive to exertion and stress as I was before, but the chamber seemed to keep me afloat in a subpar but functional state. Also, when I stopped using it the regular crashes returned.

I got a prescription from my doctor and bought my own unit used from the following company:

http://www.oxyhealth.com/solace-210.html


My unit is the one shown (Solace 210) which I bought for $5000 (US dollars) used. I think they're about $7000 new. This is the best investment I ever made as it's kept me functional enough to teach for a living for over 9 years now. I cringe to think of my life without it.
Adds more later
forgot to mention that I initially tried using a hyperbaric chamber at an alternative health clinic before I bought one. Each session was $75 and most places cost ~$200/session. So even at $75/session it paid for itself in a little over a year since I use it twice per week
 

Jesse2233

Senior Member
Messages
1,942
Likes
5,364
Location
Southern California
Another ME/CFS + Lyme patient from MyPatientMatch

Hyperbaric Oxygen Chamber Therapy (HBOT) Review

by Luke>1 yr ago


Back when I was trying an onslaught of antibiotics for Lyme I tried about 30 "dives" in a Hyperbaric Oxygen Chamber Treatment (HBOT) along side the antibiotics. It definitely made me feel better but the results were very transient, once you stop taking dives the benefit are gone after a few days. So the only way this treatment could be viable for me would be if I had unlimited funds or my own chamber.

Swallow dives would do nothing for me. I would do 55 minute sessions at 2.8 ATA which is about 60 feet dive depth or 41 PSI. The chamber was pressurized with air and I would wear an oxygen helmet. There was a 5 minutes air break in the session.

me/cfslyme diseasemultiple chemical sensitivitiespostural orthostatic tachycardia syndrome (pots) / orthostatic intolerancehypothyroidismmigraineseosinophilic esophagitis (eoe)

0
6
 

ryan31337

Senior Member
Messages
555
Likes
1,272
Location
South East, England
Oxygen toxicity can cause damage to cells as the partial pressure of O2 increases. Typically treatments were performed for 90 minute at 2ATM with 100% O2. We really didn't see evidence of O2 toxicity. Occasionally we would see barotrauma. To your point above, at 33 feet depth at 100 percent 02 for 90 minutes should be equal a hard chamber HBO. I have been a certified diver for 48 years and nitrox for the past 10 years.
I've heard some people say developing O2 toxicity is more of a risk underwater vs dry dive...I have no idea if there is any evidence behind those claims or why that would be the case though.

Thinking about it, doesn't a closed-loop rebreather maintain a constant pO2 of ~1.3. Would cost about the same as a soft-shell chamber and be a lot more fun in the swimming pool :D
 

Jesse2233

Senior Member
Messages
1,942
Likes
5,364
Location
Southern California
Another HBOT user from Facebook
I too have ME and Fibromyalgia and have had 34 sessions now at my local MS centre. I'm enormously better, far less pain, more energy less PEM less brain fog. I feel almost 'normal'
I've been ill for 12 years. I'm so thrilled! I have one 16.5' or 24' dive a week now.
more from the same person

I'm hugely relieved to have been able to come off all my painkillers, that in itself has cleared my brain fog as well as the oxygen. I'm feisty again! My sleep is now refreshing. I have ME and Fibromyalgia but I can see a future now.
 

NotThisGuy

Senior Member
Messages
301
Likes
347
So I've calle my local HBOT center.
205€ per session.
The guy said I need 30 sessions for CFS and chronic Lyme and that they only had improvement that lasted years.
I know its hard to trust someone who works there and they for sure didn't called the patients who just didn't come back after few treatments and stopped the therapy.
But anyway it sounds more promising than anything else so far.
Well..... how to afford this now?
 

aaron_c

Senior Member
Messages
681
Likes
1,054
If you are planning on doing at least two months of daily dives I think it is cheaper to buy one and then sell it if it doesn't work. The model my naturopath just bought appears to retail for $4130...at least for now--I'm not sure how long the "sale" will last or if it's a permanent discount. $4130/265=15.6, so after sixteen dives you might as well have bought the thing yourself. At least one hyperbaric chamber on ebay had a 10- or 15-day money-back guarantee, meaning that at the worst you could order it, do 10-15 dives, then send it back and only pay for shipping. I'm looking at the USA ebay, I'm not sure what's available in Germany but mHBOT (soft-walled) should ship relatively easily.

As for the potential resale of mHBOT: I don't see any used mHBOTs on ebay right now, but maybe that is because they get snatched up? I see 12-24 people watching HBOTs and mHBOTs with an "or best offer" option, so I think people are interested.
 
Last edited:

NotThisGuy

Senior Member
Messages
301
Likes
347
the question is if the machines for home are really that safe?
Hip posted some concerns by the FDA and that's pretty much what the guy on the phone from the HBOT center told me aswell.
 

aaron_c

Senior Member
Messages
681
Likes
1,054
Hmm...So I took another look at their website. They may be just who they say they are but why are they anonymous? That's a big red flag for me. Of course people who report concerns to a watchdog organization should be anonymous. But nothing else about the watchdog group should be anonymous. If they are truly a watchdog organization then transparency should be their watchword.

In addition, they link to an FDA report that basically says HBOT hasn't been cleared for use with autism and links it to other questionable treatments for autism. Maybe they are just funded by conservative doctors and normal (HBOT not mHBOT) companies? Otherwise I don't know why they would link to a report that says "don't use HBOT because the FDA says it might not work.

Finally, the story of someone dying: It was a child who asphyxiated because the hose pumping air into the tank became detached and the parents left their kid unattended for a few hours. In order to sue, the plaintiffs contended that they did not know this could happen. Fair enough, but we now know this might happen, and we are all capable of getting out of the HBOT tank if the hose pumping air in stops working. And as far as I can tell the plaintiffs lost their court case, which is probably why the above website said "regardless of fault."

So I'm a little confused and suspicious. Is it an industry hit-job? Are HBOT manufacturers concerned with competition from mHBOT? Is the anonymity used to hide the Sparks family who lost their court case but still want to see Oxyhealth pay for the death of their son (maybe not if this group was around ten years ago)? Or is this another battleground in the conventional vs alternative medicine arena, with the website authors being of the opinion that no one should ever use any treatment that has not been thoroughly proven to be effective (and subsequently approved by the requisite government bodies), even when that means that no effective treatments are available?
 
Last edited:

CFS_for_19_years

Hoarder of biscuits
Messages
2,359
Likes
5,770
Location
USA
If you are planning on doing at least two months of daily dives I think it is cheaper to buy one and then sell it if it doesn't work. The model my naturopath just bought appears to retail for $4130...at least for now--I'm not sure how long the "sale" will last or if it's a permanent discount. $4130/265=15.6, so after sixteen dives you might as well have bought the thing yourself. At least one hyperbaric chamber on ebay had a 10- or 15-day money-back guarantee, meaning that at the worst you could order it, do 10-15 dives, then send it back and only pay for shipping. I'm looking at the USA ebay, I'm not sure what's available in Germany but mHBOT (soft-walled) should ship relatively easily.

As for the potential resale of mHBOT: I don't see any used mHBOTs on ebay right now, but maybe that is because they get snatched up? I see 12-24 people watching HBOTs and mHBOTs with an "or best offer" option, so I think people are interested.
The following link shows recent COMPLETED eBay offers, i.e., they were either bought, bid on, or the listing expired. A GREEN price means the item was bought or bid on. A black price means the listing expired. You have to click on the listings to see if they are used are new (there were a few used ones). The listings are shown from lowest price to highest.
https://www.ebay.com/sch/i.html?_sa...15&_clu=2&_fcid=1&_localstpos&gbr=1&_zpclkd=1
 
Last edited:

aaron_c

Senior Member
Messages
681
Likes
1,054
Thanks @CFS_for_19_years. So just looking over this it seems like the smaller (and cheaper) chambers were more popular. The used ones that were sold lost...maybe $2000 off the value of new, comparably sized tanks. It might be more for the very expensive versions that don't seem to get sold much, and it might be a little less for the smallest chambers--when a seller accepts a "best offer" then you can only the seller's asking price (that didn't get met).

It seems like much of the risk in buying and then reselling mHBOT is that the price of tanks might go down in the mean time, pushing your resale value lower.

Still, I see that a tiny used tank went for $2024, which is not bad at all (for the buyer).
 

Jesse2233

Senior Member
Messages
1,942
Likes
5,364
Location
Southern California
An interesting HBOT autoimmune recovery story of a woman and her children. CFS is mentioned as one of the diagnoses received by her children.

Note that this woman has a financial stake in HBOT
I intend to focus on my three little girls. However, I think it is also important to explain the illness that I had. In doing so I feel it would be easy to understand the familial disorder, and by using Hyperbaric Oxygen therapy we all were able to regain our health and lead a normal life style. In 1991 I was diagnosed with Lupus, Cerebral, Vasculitis, Rheumatoid Arthritis, Including auto immune markers in the spinal fluid that indicated a demyelination process of acute Peripheral Neuropathy, all of which were documented by S.P.E.C.T. Brain scans, blood test, skin biopsy, spinal taps, along with lower and upper EMG's.

To shorten this story, I was treated using Hyperbaric Oxygen Therapy, or HBOT for 28 treatments, I was sent back to the doctor who ordered additional S.P.E.C.T. Brain Scans, spinal taps, skin biopsy, EMG's and blood test. All of which returned to normal. My Doctors have since written many letters fully endorsing Hyperbaric oxygen therapy treatment!

I have three little girls, all are two years apart in age, during the time of my illness and recovery all three little girls had very unusual illness constantly throughout their childhood. This illness included, joint pain with swelling, grand and petite maul seizures, bladder and kidney infections, Asthmatic bronchitis, Otitis Media, high protein in urine, back, neck, knee pain, gastrointestinal reflux confirmed biopsy, chronic constipation, with fissures, head aches, skin rashes, unable to go in the sun, skin thickening, yeast infections both vaginal and under arms, delayed speech, positive ANA's with patterns abnormal S.P.E.C.T. Brain Scans. All three of my children missed at times 60 days of school in a year. Final diagnosis, Collagen Vascular disease with lupus -like, Scleroderma overlap, connective tissue disorder, and at times their records read, CFS, and FMS. In short, a disease process in which the bodies immune system attacks its self, in the case of my three girls, Central Nervous system, Joints, skin, both internal and external.

I had heard that Dr. Paul Harch MD treated children with success, I sent my own S.P.E.C.T. Brain scans to Dr. Paul Harch MD and begged him to treat my three children. He agreed to meet with us in New Orleans. I drove the three children out to New Orleans to meet with Dr. Harch, For I knew that this was the only treatment that would work and I felt it had saved my life! Please understand that a person with a DX as I could normally not be able to drive from California to New Orleans alone without being completely well. Again to make a long story short, all three of the children were given S.P.E.C.T. Brain Scans before and after treatment with Hyperbaric Oxygen Therapy, or HBOT, blood work as well, the first set of blood tests revealed a Sedimentation Rate of more than 100 in one child, upper 60's in the other children, indicating gross inflammation. After using Hyperbaric oxygen therapy the test returned to normal! In addition the S.P.E.CT. Brain Scans were improved near normal as well after 40 treatments of
Hyperbaric Oxygen Therapy.

Since that time my children have received Hyperbaric Oxygen therapy about twice monthly. The difference in our life is without words! They have improved health, they can now play in the sun, and all of their grades have improved to the point of Principals Honor Roll and the program for the gifted. There treating Md.. writes an RX for Hyperbaric yearly. Hyperbaric and Dr. Harch have impacted my life to which it will NEVER be the same. I can never thank Dr. Harch enough. We are deeply grateful to him.
It is for these Reasons we have opened our center for Health, Rapid Recovery Hyperbarics. We do not feel that one must lose their home In order to gain their Health!

http://www.hbot4u.com/history.html
 
Last edited:

Jesse2233

Senior Member
Messages
1,942
Likes
5,364
Location
Southern California
from 2precious on ProHealth, assuming their diagnosis was chemically induced CFS
I had a toxic chemical inhalation injury and it had multiple effects, including hypoxic areas in my brain observed on SPECT scans, severe chronic fatigue, pulmonary problems, etc. I also developed severe bone infections in my jaw that did not respond to 13 surgeries and 19 rounds of antibiotics. I had 60 treatments in the hospital high pressure (2 ATM) units that stopped the bone infections and helped clear the brain fog and the severe muscle pain. It was important that HBO be given in succession as it helps the body to form new capillaries to bring blood to idling brain neurons to cause them to fire again. The bone infection was actinomycosis, and the oxygen under pressure was able to stop it and halt the bone infections that had destroyed 60 percent of my left mandible. At that time the low pressure HBO units came out and my neurotox physician began treating me with it when the muscle pain became bad. Initially I started with 40 treatments, then went to 20. Approximately every 6 months I needed a series. While it is not a cure, the amount of relief of pain and great improvement in cognitive function and quality of life was the biggest relief. Within 2 weeks of a treatment series, there is notable improvement. I eventually was prescribed a unit at home. That was covered under Workers Comp. It allows me to be treated when I need it, and not have to wait months for authorizations. I use it when the pain gets bad and nothing else is helping give relief. A 2005 study done at the Univ. of PA by Stephen Thom, MD showed that hyperbaric treatments increased number of the patient's own stem cells eightfold and that may play a role in helping the body to repair itself.
 
Last edited:

Mithriel

Senior Member
Messages
688
Likes
818
Location
Scotland
I had never really thought about how HbOT works and just found out recently.

Oxygen is carried round the body by red blood cells and that is what doctors look for and want to keep to a certain level. However some is carried in the interstitial fluid round the cells, but is considered insignificant so is ignored. Dr James' reasoning was that this oxygen becomes important when the small blood vessels are damaged so haemoglobin can't reach where oxygen is needed but the fluid still bathes the area. The HbOT increases the amount of oxygen in the fluid so that it is available in these damaged areas.

It is interesting that mitichondrial studies have shown we have more mitochondria in the interstitial fluid than controls do.

It is one of these areas of medicine where doctors are not taught about certain things that may turn out to be important. Dr James gets very frustrated that the profession is happy to put up drips to get fluids and minerals into the body but won't do anything to help oxygen get to anoxic areas.
 
Last edited:
Messages
805
Likes
3,597
@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
yes there's one about 5 miles from me and Ive heard from a woman in the local ME group on facebook that she's had a lot of benefit from it going from severe to moderate/mild ME in the last year. you join the centre which is a charity then the sessions are £12 a go so Ive decided to take the plunge (sorry couldnt help myself):rolleyes::whistle::redface:
got an appointment next week