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ME/CFS: A disease at war with itself
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Has anyone tried hyperbaric Oxigen therapy?

Discussion in 'XMRV Testing, Treatment and Transmission' started by roma, Nov 15, 2010.

  1. roma

    roma

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    I have been doing a lot of research and looking for ways to get better i now have been sick for about 7 months and my body seems to be able to put up a good fight but im taking a lot of vitamins and supplements which are merely making my immune system work extra hard which eventually won't work anymore, the brain problems seem to be the worse even though i take vitamin b12,b6 and fish oil, i feel really weird sensations in my head hot and cold feel tingling and like it's getting numb and sometimes i feel like im being hit with a sharp metal(which hasn't happened in a while than god), anyways i started going to the spa lately to try to clean my skin from dead cells as the hot water and the vapor seem to actually help, sometimes i go the pool as well and i seem to feel a lot better when im in there not sure it it is real or not or maybe im just distracted by being surrounded by people and forget about my health problems, i think it really helps me feel better which is why i started doing some research on how to get more Oxigen to the brain and the Hyperbaric Oxigen came up im wondering if anybody here has tried it and if it has help, i have seen videos of kids with autism that after a couple of months of therapy they start to get a lot better, supposedly helping the brain heal , so im thinking antiretrovirals to stop virus replication + vitamins and supplements to help the immune system + hyperbaric Oxigen therapy for brain healing, once the brain is infected with xmrv there's no way to flush the virus out of the brain(yet) but as long as we can stop virus replication the oxigen therapy should be able to help the brain heal...
  2. ukxmrv

    ukxmrv Senior Member

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    This used to be popular way back in the late 80's/90's and CFS patients used to go to MS centres and use their facilities. More recently Dr Cheney has cautioned against this due to PFO's in patients and oxygen toxicity. I've had no experience so I hope patients with experience will comment and let you know how it worked for them.
  3. My CFS Dr says she has had some patients who have tried it and have become a lot worse. So I'd be careful - maybe this is why Dr Cheyney is not advising it.
  4. anne_likes_red

    anne_likes_red Senior Member

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    I have, yes.
    I've written about my experience here before....not sure when or I'd pull up the post!
    I used in it conjunction with high dose Vitamin C and I had very good short term results which were valuable at the time, although long term it didn't stop the progression of ME/CFS.
    My understanding at the time was that the treatment greatly increased my levels of superoxide dismutase...and this is partially what benefited me.

    ETA I looked but still couldn't find that post. Actually, I may have deleted it b/c it contained personal information about my doctors that I decided I didn't want to share on a google searchable forum.

    Basically my treatment was five consecutive daily one hour sessions in a hard chamber - not a home chamber - with an oxygen mask. This was in 1997, and again in 1998 & 99.
    I can't remember the depth or the concentration of oxygen. Immediately prior to each chamber session I had 45 g of IV Vitamin C.
    The treatment was very effective for the acute symptoms I was experiencing at the time, but it's really important I state that these symptoms were not typical CFS symptoms though they were related to my "initiating event". My HBOT treatment was suggested by and supported by my GP (General Practioner - MD) and by a specialist colleage of his who supported me in the city I travelled to for treatment.
    As far as my ME/CFS went with HBOT and Vit C, I was functioning at around 75% at the time of treatment - so quite well really - and I suffered no ill effects.
    Cost was not high for me. I think around the equivelent of $250 US for each 5 days of treatment. The airplane fares and accommodation costs etc were much higher.
    (If anyone wants to know more specifics please PM me.)
    Best,
    Anne.
  5. Wayne

    Wayne Senior Member

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    Hyperbaric Oxygen Therapy (HBOT) Article

    [FONT=Arial, Helvetica, sans-serif]Hi Roma,

    I would love to try HBOT, but do not have the resources to pursue it at this time. I too did a fair amount of research, and discovered a several articles by Jill Neimark who feels it has helped her deal with chronic Lyme, something that many PWCs have.

    Anyway, thought I would share the following article by Jill Neimark in case you had not run into any of her writings.

    Best, Wayne
    ..................................................................

    Healing Chronic Illness at Home

    Oxygen, Ozone, Sauna and Detoxification for Lyme Disease, Fibromyalgia, Chronic Fatigue Syndrome, and MCS 11-21-2003

    By Jill Neimark with Byron White, N.D.

    Jill Neimark is an author and journalist who writes frequently on health and science for national publications. Ms. Neimark is also a Lyme patient. Byron White, N.D., is a naturopath who suffers from Lyme disease and employs a variety of home-based therapies to successfully manage chronic illness.
    .............................................................

    Three and a half years ago, on a pleasant June afternoon, my life plunged off a cliff into free fall. I walked in a Connecticut garden and twelve days later had a big bulls-eye rash on the back of my knee and a classic case of Lyme disease. Even though I went on antibiotics at once, I slid into a nightmare of ill health.

    Antibiotics stemmed, but did not kill, the infection. As the spirochete relentlessly invaded my nerve tissue, I felt as if electronic buzzers were being pushed incessantly throughout my body. I suffered from vertigo, terrible thirst, and incredible pain in my neck and back. I was also crushed by a fatigue so profound I figured if it lasted, Id eventually waste away and die.

    Thus began an odyssey that has not yet ended although I am improving steadily and without using antibiotics. In the course of research, I met and befriended a knowledgeable naturopath who suffers from lyme himself, Dr. Byron White. Together we have put together an approach to healing therapies that you can do at homeall of which should be monitored by your doctor, of course. These therapies are intended to restore oxygen to hypoxic cells, kill pathogens, help detoxify the liver, colon and entire body, and use hypothermia to improve immune function and metabolism and help the body sweat out toxins. These profound healing therapies employ both age-old naturopathic techniques and state-of the-art modern tools, and they are ideal for the chemically sensitive who cannot tolerate drugs.

    A hand-tailored approach in our own homes allows us to move from illness to health slowly, carefully,
    and with needed rest and ease. It is important to fit the treatment to the person and not the person to
    the treatment, explains Dr. White. Each persons body goes through a natural building and detoxification cycle as it heals.

    [/FONT][FONT=Arial, Helvetica, sans-serif]HEALING AT HOME: THREE ESSENTIAL POINTS

    [/FONT]
    [FONT=Arial, Helvetica, sans-serif]Before you begin a healing journey, its important to know that:

    1) No matter how bad it gets, you can get better.

    2) Patience is key, because each body is different, and you must allow yourself time for trial and error, and for cycles of improvement as well as mistakes and setbacks. Think of yourself on a treasure hunt, picking up clues along the way.

    3) If possible, seek therapies you can do at home in your own time, and on your own schedule, while listening to your bodys responses and discussing them with a trusted medical practitioner who will be your guide in healing.
    [/FONT]
    [FONT=Arial, Helvetica, sans-serif]HYPERBARIC OXYGEN[/FONT][FONT=Arial, Helvetica, sans-serif]: Restoring The Entire Body

    The first therapy that both Dr. White and I use is hyperbaric oxygen. We both own portable hyperbaric oxygen chambers that have made a significant difference in our health. These home chambers are approved by the FDA, are available by prescription from your doctor, and pressurize to low, safe levels4.5 psi, or about 3 metres below sea level. They are often called mild hyperbaric oxygen chambers. With the use of an oxygen concentrator and a medical passthrough, they can increase tissue oxygen levels up to 400%.

    Hyperbaric oxygen treatments trigger a marked increase in the ability of white blood cells to destroy bacteria, help new blood vessels grow, saturate tissues with healing oxygen that helps stop damage from toxins and inhibit the growth of anaerobic bacteria. They also improve brain function. One specialist in mild hyperbaric therapy, Gunnar Heuser, M.D., Ph.D., found that using these chambers, circulation and blood flow improved in the brain (using specializing scanning imagery), after only ten sessions. Rhett Bergeron, M.D. offers mild hyperbaric for patients in his two clinics outside Atlanta, Georgia. Most individuals with chronic illness suffer from hypoxia, he notes. I have found that patients respond extremely favorably to the hyperbaric treatments, says Dr. Bergeron. Mild hyperbaric has been shown to be just as effective as treatments at greater pressures and the patients like how it makes them feel.

    The first hyperbaric chamber in medicine was made by a British physician in 1662. However, hyperbaric treatments just recently became available for home use in a portable chamber. I learned about portable chambers through Lance Brubaker, who was diagnosed with lyme in 1990 and now works with Dr. Bergeron. I had benefited from hyperbaric at much higher pressures in clinics, but the cost was prohibitive, and I hated having to relocate to get my treatments, and I never was able to take off enough time to make a long-lasting difference in my health.

    According to Lance, at his sickest, I literally couldnt walk 60 metres without passing out. I had countless disassociated symptoms, some life threatening. In 1994, he shut down his business and built his own home hyperbaric chamber. I did hyperbaric three times a week for two months, and two times a week after that for two years. I also added in a low temperature sauna protocol, and did a lot of cleansing and detoxify. Today, Lance is fully recovered. Last summer, at Lances invitation, I visited Dr. Bergerons clinic, tried just two sessions in the portable chamber and was delighted to feel improvement in energy and muscle strength, as well as lessening of the buzzing static that seems to accompany lyme, and that author Amy Tan (who suffers from late stage lyme) has called, Dolby digital syndrome.

    (I also got a look at Lances old chamber, which sits like a proud relic in his garage, a testament to his ingenuity and pure guts, as the thing is built out of butane tank and submarine hatch and has no windows. Today he has a state-of-the-art portable chamber in one of his extra bedrooms and still uses it if he feels a cold coming on or wants a tune-up.)

    Before my home chamber I was suffering excruciating headaches that I call lymegrainesthey were clobbering me once or twice a week. Since getting my chamber last July, the headaches have vanished. My energy, digestion and sleep are improved. But perhaps the greatest benefit is how I feel in the chamber: as if all my neurons, which had been unhitched and cut and were just dangling and doing the jitterbug, have been reconnected and are working properly. I even drift off to sleep at times. So, oddly, it has become my favorite placea kind of womb of feel-good safety. I use my chamber about twice a week. to the chamber is typical, according to Dr. Ignacio Fojgel, M.D., Founder & Head of the Complementary & Integrative Medicine Department at Maimonides University in Argentina, and Chief of the Hyperbaric Medicine Unit there. The action of pressure on the autonomic nervous system has never been given its due attention. Many people sleep during the session or become relaxed and peaceful.

    Parasympathetic up-regulation occurs, and a relatively high parasympathetic tone is needed for most healing processes to happen. In fact, in chronic illness, the sympathetic nervous system is often dominant and can trigger nervousness, agitation, hyperactivity, sleep difficulties, and deregulation of hormones and neurotransmitters. Hyperbaric treatment helps restore balance.

    Barbara Kris, a 60 year old from North Carolina, suffers from post-polio syndrome and lupus, and nearly died a year ago from necrotizing fascists, pneumonia and heart failure. Daily home treatments with hyperbaric oxygen, along with alternative therapies like chelating and glutathione, have brought her back to a normal life. People tell me its miraculous. A year ago the weakness in my legs was so bad I couldnt get up from a chair, and my doctor tells me without the hyperbaric treatments I would probably have lost my hand. I am thoroughly grateful and I would not be without my chamber.

    With a home chamber you can calibrate your treatment to your schedule and need. You can also do treatments over a period of months and years, rather than a brief stay at a clinic. When I first began hyperbaric, says Dr. White, I started with very low pressure and no additional oxygen. I was severely deconditioned from illness and twenty minutes was all my body wanted. As my body began to function at a higher level, it began to push out excess carbon monoxide. One of the things your body will do when it gets more oxygen, and thus more energy, is to begin to detox. Over a period of months he built up to higher pressures and added in more oxygen, and watched neuropath pain slowly vanish, while fatigue, balance and memory problems improved.

    There are other methods that may increase oxygen levels although the honest truth is, they are not nearly as powerful as they do not push oxygen into the tissues. Still, we know of one lyme patient who breathes in oxygen through a cannula while increasing his circulation by sitting in a hot bath. For those who are well enough, light exercise on a treadmill or stationery bicycle while breathing in oxygen is also helpful. Finally, one bedridden patient took an oxygen supplement called DiOxychlor along with a supplement called nattokinase, which helps clear fibrin from the blood and allow nutrients to access cells more readily. She noticed improvement after combining the two supplements (today, with many alternative therapy interventions she is 90% improved).
    [/FONT]
  6. Ember

    Ember Senior Member

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    I've tried it twice, both times for radiation therapy damage. Privately, I hoped that it would also help my ME/CFS.

    The first time I had 20 dives, and my memory is mostly of my difficulty complying with the daily schedule. The second time I was given 40 dives, and again I found the schedule quite a challenge. Sometimes getting to the treatment was an ordeal, but I did notice that my energy was improved by the end of each session. Getting back home was never a problem.

    Toward the end of two months, friends said they saw improvement in me. I seemed more like my old self to them. But in the last week of treatment, horrible life events began to wipe out any gains that I might have made.

    So...hard to say. Overall, I think it helped initially, though not dramatically. I was tremendously glad, of course, of any improvement. I don't know whether I could have maintained the improvement under other circumstances.

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