Hyperbaric Oxygen Treatment Lyme, CFIDS/FM

Discussion in 'Lyme Disease Archives' started by victoria, Oct 21, 2006.

  1. victoria

    victoria New Member

    I just realized it... very interesting, but long, I'm just reprinting here the part about HBOT.

    AND interesingly enough, the 2 people she mentions (one a doctor and one who builds home-use chambers) happen to live in/around Atlanta... close for me!)

    ---------------------
    Healing chronic illness at home:
    Update -
    Lyme, Chronic Fatigue Syndrome, and Fibromyalgia Related News
    ImmuneSupport.com 06-27-2005
    By Jill Neimark

    About 18 months ago I wrote an article with Byron White about my approach to healing lyme disease at home—an approach that applies to many chronic illnesses, infections, and neurological disorders. I have since improved steadily and in small increments, adding in other approaches as well. Although I still have a long road to travel to become the person I was before lyme, herein I offer an update. I hope some of you will be inspired and helped.

    I: Oh The Horror

    A brief update: Lyme disease felled me in 2000 and life has not been the same since. Although I took a total of six weeks of antibiotics in the very early stages, the drugs did not cure me and I felt so ill on them I chose to shift to alternative medicine.

    At my worst, I was so sick I could barely get around the neighborhood, had profound, debilitating fatigue, sleep problems, muscle pain, low grade-fevers, crushing migraines, nausea, and a constant feeling of being poisoned and ‘buzzy’ all over. I also had muscle weakness and burning that made it difficult to stand in line at the post office or a movie.

    After being treated with hyperbaric oxygen in two separate clinics, and improving, I slowly relapsed each time. I joined various health newsgroups and one day on a yahoo list called oxyplus I heard about a guy named Lance Brubaker who had recovered from lyme using a home hyperbaric chamber. At his worst, he could not walk 100 feet on his own. He’d built his own in 1994 but now had a portable home chamber and though he is in remission, still uses it regularly.

    Now he works like the workaholic he always was, and travels all over America and the Caribbean—in the service of alternative medicine and, not surprisingly, portable hyperbaric chambers.

    II. Home Hyperbaric: The Foundation

    As I’ve described here before, I got a used home chamber from Lance and it changed my life. I got the large size because I tend to be claustrophobic (there are three sizes, like three beds for Goldilocks).

    This chamber is portable, FDA approved, and goes to 4.2 psi (pounds per square inch). It pressurizes with air, venting 50 liters every 3 minutes, and I breathe in oxygen using a medical passthrough and a simple plastic mask.

    Using my chamber, I returned to the land of the living. Although there is debate in the lyme community and clinics about the most beneficial pressure for lyme (a home chamber uses relatively low pressures, whereas clinics tend to treat lyme at 2.4 ata), I’m certain my chamber suppresses the lyme bug and even more importantly, replenishes my entire system. The home chamber pushes 200-400% more oxygen into the tissues.

    Borrelia burgdorferi is oxygen sensitive as it is microaerophilic—it can handle small amounts of oxygen but, for instance, will die in air which contains 21% oxygen.

    I think one reason the home chamber helps so much is it counteracts many of the ways borrelia damages the body. Borrelia alters pathways and chemicals in one’s neuro-immuno-endocrine system in order to create a hospitable environment for its penetration and survival in all the tissues of your body. Glutamate is often upregulated, leading to sleep disorders and chronic pain and hypersensitivity.

    In fact, glutamate upregulation is known to be a serious problem in pain disorders, ALS, perhaps MS and certainly in chronic lyme and fibromyalgia. NMDA receptors are upregulated, correlating with anxiety, panic attacks and sleep problems.

    Oxygen metabolism is downregulated, leading to a permanent hypoxic state in which all organs suffer. Pro-inflammatory cytokines and molecules called matrix metalloproteinases are upregulated, leading to profound fatigue and damage to blood vessels and cell membranes.

    All these shifts in our biology are good for the bug and bad for the host (me or you.) And these shifts are common in CFIDS and other infections similar to lyme. Pressure and oxygen can truly offset a lot of the ways chronic infection disables the body.

    My chamber usually sits right by my l-shaped desk at a bank of windows where I write. I use it whenever I want, for however long I feel I need it. I lie in my chamber with my ipod turned to a playlist I named “Soothing,” and because the pressure and oxygen feel so good, I find it a good place to relax and meditate.

    With this chamber in my life, I still most definitely live in the shadow of lyme but I function and don’t fear disability. It is the life of someone managing a chronic illness while still trying to figure out how to get totally well.

    After two years of owning a chamber, it had become as ordinary to me as my morning tea. I had not realized that it was still my liferaft until I discovered that the seam of my chamber had a leak.

    This is unusual but my chamber had originally been in a clinic and already had many hours of use when I got it. I had to dismantle my chamber and ship it back for repair. I went four weeks without a chamber.

    During this time, I began to slowly re-experience lyme symptoms—increasing fatigue and muscle weakness/burning returned, and with it, something that I can only attribute to the bug’s hijacking of the nervous system. I alternated between periods of panic and deep sadness.

    It was as if a protective barrier were slowly being peeled away and I had to look again into the nightmare scenario of full-blown lyme disease. I could feel the bug resurging. Or, more precisely, it was as if my neurological system—which doesn’t know the English language, and didn’t know that my chamber was out for repair—was signaling very clearly to me that it was being attacked again by the bug.

    I had forgotten what active neurological lyme was like. Those with severe lyme often comment they fear they will die, even though they know they won’t. My only respite was knowing that my chamber would soon be back, the seam leak sealed by the manufacturer, and I’d soon be lying in it, breathing in oxygen under pressure, and thanking God for my good luck.

    For me, the hyperbaric chamber is absolutely fundamental in leading a reasonable life with lyme—while I keep looking for ways to completely eradicate the bug.

    During this chamber-less time I traveled down to Atlanta, where Lance works with Dr. Rhett Bergeron, one of the more innovative alternative medicine doctors in Georgia. Both Lance and Dr. Bergeron are missionaries for alternative medicine, and extremely kind people.

    On the morning I was to return to New York, Dr. Bergeron picked me up at my hotel, drove me over to his office, and gave me a session in the portable chamber there, so that I would be fully able to make the trip home with ease. I also met several other lyme patients under his care, one who had traveled from Maryland for treatment. Dr. Bergeron does not use antibiotics for lyme, but a multitude of other anti-infective and cleansing treatments.

    Lance has a portable home chamber at home, where he operates a business distributing chambers to doctors and patients. He recently sent a chamber to his parents as a gift when they both fell ill.

    Over dinner he said to me, “How can you ever repay your parents anyway? And besides, I’m doing it for me, not them. I am the one who will be responsible for their care as they age. The chamber will protect them. They are already feeling much better and using it daily. I still use my chamber frequently, but I now use my chamber as a stress modulator. I could not keep up this hectic schedule without it. I’ve traveled four days out of every seven for the last month.”

    I recently heard from a former lymie named Thomas who was homebound with chronic lyme and had been on antibiotics for two and a half years to no avail. He had been sick for 6 years. He decided to buy a home chamber after he saw my first article. Now, 18 months later, he emails me,

    “I’m doing better by leaps and bounds. I’m going on lots of vacations, working full-time and commuting 3 hours daily, without taking sick days. For me, the chamber was great. But I also believe it’s been the combined effect of ozone sauna and oral hydrogen peroxide that have put me in the right direction. I also began using glutathione and chlorella and they have only added to the success. It’s just so nice to be feeling decent and go out with friends instead of living in bed.”

    III. Hyperbaric and RSD: An Aside

    When I told Lance I was going to write about my chamber again, he reminded me that it is effective in other chronic conditions. Lance suggested I give a young woman I’ll call Jane Doe a call to hear her extraordinary story.

    She was a young single mother with two children when she slipped down some stairs at work and ended up with reflex sympathetic dystrophy—a debilitating syndrome in which often one’s entire body is in excruciating, chronic pain. He said she’d been cured by the chamber. I’ll reproduce her part of my talk with her here:

    “RSD is paralyzing, stabbing pain that never stops. This was two years ago. I was in so much pain I threatened suicide in front of my doctor and my parents. I was living by myself in northern California and had to get up each day to stoke the fire to keep it warm. I had to crawl to do it, until I got a wheelchair.

    "I was starting to become incontinent and have cardiac problems. I couldn’t hold a fork. One day I put into Google, “RSD cures” and I found out about two people in England who had gone into remission with hyperbaric oxygen. I thought, well, let’s give it a go. I was ready to sell everything I owned just to survive.

    In the beginning, I went into my chamber three times a day for an hour each time. Within six months I was able to walk and drive again. I remember the first day I was able to drive, and I stood on the street afterwards and I just kept saying to myself,

    “This is just incredible to just be standing here, a guest in my own body, not in pain, standing by myself in the world.” These days I go into my chamber three or four times a week, and just go to sleep in there. It’s very relaxing. I’m going back to school to become a medical assistant. I feel nothing but gratitude for the entire experience. I hope my story empowers others.” ......

    (article goes on about other therapies author has used successfully, or not; very interesting, read rest of article at:

    http://www.immunesupport.com/library/showarticle.cfm/ID/6515/T/CFIDS_FM/searchtext/healing%20chronic%20illness%20at%20home )
  2. jarjar

    jarjar New Member

    As I ran across this story a couple of years ago and had to call Lance. We both use to live in Austin and both were diagnosed with cfs in the late 80's. I remember when he was building his first chamber.

    I was in a study with a major college in Texas using the HBO chamber. It helped temp. but that was about it.

    But I think there would be more hope using it daily for very long periods. The problem is like everything else who can afford the machine. If it was a guarantee fix I guess we would all go out and buy one somehow. I would like to see studies done of the home base units.

    Lance is a Type A hard worker and was encouraging me to help hime sell the units when we talked. I told him my health wasn't at the point that I could tackle that job.

    I'm glad to see him in recovery though as I remember how ill we both were at one time.

    J
  3. victoria

    victoria New Member

    Maybe you should call him up and find out more? - like how he's doing, if there are more studies, and if he figured out what was causing his CF and anything else he's done to help himself?

    My opinion after reading the article is that the author hasn't addressed the bottom cause of her problems basicaly.

    It seems to me the HBOT would be very helpful while doing abx, like my son, if would help shorten time of treatment. The difficult aspect would be how much worse of a herx he could have while doing abx & HBOT, or if pts alternate between one or the other, or what... I don't know, I haven't had a chance to go further, but hope to this week.

    I am waiting for someone to call me back from the clinic first of all. I know my son's doctor offers it, but is too far away to go to on a regular basis...

    The NP had said at his app't last week that they hadn't pursued it with us as our funds are limited/no insurance. . . but if it would shorten the length of treatment, it would be worth every penny, as those pennies will go out sooner or later otherwise. Or so it seems.

    best,
    Victoria
  4. HppeandMe

    HppeandMe New Member

    How much are these chambers and do they have any guarantee? How long and often should a person use it if they basically feel like they are dying from Lyme?

    Thanks for your help!
    Hope

    p.s. If you could provide me with Dr. Lance's telephone number to get more information (if that is allowed) that would be wonderful!
  5. victoria

    victoria New Member

    The article is in the library here, the url is above - the phone numbers of the doctor and Lance are at the end as are several other phone #s/addresses of other therapies the author mentions.

    At this point, I don't know any more than you do... haven't been able to get much farther this week, too much interference from 'Life', sigh!

    But from what I've seen the units are probably reconditioned so cheaper, did also see some individual new units elsewhere priced at $14k, which is cheap comparatively... I'm wondering if it is possible to set up a charity type thing like the UK has for HBOT without getting into legal trouble. Would sure help to offset the cost!

    best,
    Victoria

  6. HppeandMe

    HppeandMe New Member

    Hi Victoria,

    Wow it seems like they are very expensive!! I so would love to give it the opportunity though. What type of charity did the UK do?

    I am interested to see if this is something that I can do. I am so desperate to get my life back as we all are.

    Thanks again for your help!
    Hope

  7. victoria

    victoria New Member

    Check the thread on 'hyperbaric oxygen therapy' started by sheila01 on the CF/FM board --

    u34rb has posted on that thread, she lives in Scotland and does HBOT thru a charitable organization set up for MS plus other problems actually. She says she feels much better, has done it for 5 years I think, and is very helpful.

    She's not been tested for Lyme so why it is helping is unknown exactly of course. She also listed in that thread what times she will be in the Fibro chat rooms Friday and Sat.

    hope that helps!
    Victoria

  8. u34rb

    u34rb New Member

    Hope (and Victoria),

    Actually I'm a 'He'! And I'm only in the chat room occasionally, by arrangement.

    The best diagnosis I’ve had is “chronic fatigue with pain”. But lyme may be the cause. If you want to know why HBOT has helped me (despite having a pretty useless diagnosis), then do a search on HBOT on the fibro message board. Alternatively, get hold of a decent book on the subject.

    If you want to connect with a medical expert (not me!) about HBOT, then post a reply suggesting the best days for you, and we can arrange to meet in the fibro chat room. The best time for me is 6:45 PM GMT. Which I think is presently 2:45 PM east coast US time, or 11:45 Pacific time?

  9. victoria

    victoria New Member

    Sorry u34rb! But hard to tell from your 'name' ... and guys seem to be in the minority here - So I used the generic, hehe!

    It would help if you could fill out your profile... reading/knowing something about people who contribute really can help a lot! At least it makes it a bit more personal.

    all the best,
    Victoria

  10. u34rb

    u34rb New Member

    Victoria,

    Don't worry, no offence taken. Perhaps s/he would be a suitable gender-neutral second-person term.

    I’ve updated my profile, but I can’t compete with yours. Where did you get that photo?

    I’m sure I would be impressed with your BFA if only I knew what it was. What’s “esp door woman for dogs”? Sounds like an anagram, or is it a Captain Beefheart track!
  11. victoria

    victoria New Member

    you don't have much to say for yourself...? like what diagnoses you've had, or not, etc.... what else along with HBOT has worked for you, or not...?

    BFA=Bachelor of Fine Arts

    esp=especially doorwoman for dogs... I have 4, 2 of whom fight... always opening and closing doors to let one or another or group in or out... seems like a main occupation these days, wish they'd tip me!!

    the 'pic' is a cartoon someone sent me... thought it fit, since I'm about 2 weeks late for most everything!
    ;-)
    Victoria



  12. victoria

    victoria New Member