HBOT Hyperbaric Oxygen Treatment UPDATE (lyme)

Discussion in 'Fibromyalgia Main Forum' started by victoria, Nov 30, 2006.

  1. victoria

    victoria New Member

    Hi all,
    To recap for those who don't know, my now 19 yo son was dx'd with chronic lyme according to CDC standards on Western Blot and clinical picture about 18 months ago at age 17; according to the clinical picture and the certain changes they see in the bands, it correlated to his having been suffering from it for at least 2 years, probably more like 5 tho.

    He started with a lot of undue anxiety/depression, quickly progressed into sleeping 16 hours/day but unrefreshed, brain fog, and migrating pain in muscles, joints and limbs, extremities falling asleep, carpal tunnel in both wrists etc, plus lost 10 much-needed lbs, very low BP and pulse (48).

    I AM POSITIVE he'd have been dx'd with CF/FM as all his 'regular' blood tests came up normal and while the internist agreed at least that SOMEthing was wrong, he didn't know where to refer him.

    It was my response on the Marshall Protocol at the time and my growing awareness of Lyme as well as other stealth pathogens, thanks to this board, that led me to take him to the best LLMD in the SE.

    He has been doing oral abx since dx. It has been very slow, some of his physical symptoms have improved but his neuro/cognitive problems so far have not improved at all. Bartonella is suspected as a co-infection as he herxes to the specific abx used for it.

    Well, because he is only slowly progressing on the oral abx, and we have hesitated at the IVs -- as it would mean relocating to a different state during the treatment, we decided to try hyperbaric oxygen treatment as it has had success even with those that IV abx have not helped. (. . . but of course it has not helped everyone. )

    SO --
    My son had his first treatment today, 1.5 hour 'dive', is going to do 'double-dives', ie, 2X/day 5 days per week for total of 40 treatments over approximately 4 weeks. (We elected to do it this way since it is a drive of about 1.5 hours each way, altho we have to allow 4 hours in between.)

    He felt sick and irritable initially right afterwards, but since it was by then noon and he hadn't had much to eat, I felt a lot was due to that. He was feeling a bit better by the time he ate and we drove home ... but a few hours after that he was feeling not only a whole lot better but with a sudden surge of energy!

    I am keeping my fingers crossed...

    I was prepared for him to just herx like mad, as that is what research has suggested happens to many if not most while being treated... altho the clinic said the few lymies they've treated have felt relief from the pain in particular and have not herxed at all.

    They also told me that some people (with no obvious health problems) come in for treatment 'just because it helps them think better'!

    I will keep you all updated over the next month... this is really fascinating...

    all the best,
    Victoria


    [This Message was Edited on 11/30/2006]
    [This Message was Edited on 12/02/2006]
  2. u34rb

    u34rb New Member

    Victoria,

    Good to hear that your son has started HBO for Lyme. What pressure or depth has he started at? And when you say 1.5 hour dive, what is the time spent at the treatment depth since this is what counts?

    All the best.
  3. AllWXRider

    AllWXRider New Member

    Hyperbarics uses increased air pressure inside a chamber. 100% oxygen is administered via a mask during the procedure. 1 ATM=~15psi. At normal air pressure, the red blood cells are the only carriers of oxygen, but at 2~2.6 ATM, even the clear plasma of the blood carries oxygen.

    A good website for reference is www.hbot4u.com , but there are many. Dr. Carl Baugh is using hyperbarics trying to rebuild a theoretical pre-flood atmosphere:
    www.creationevidence.org

    Dr. Baugh and William Wong N.D. also are using Magnetic Pulses for biological research. Dr Wong treat patients using 10-13 Hz and has had good success. www.drwong.us

    I made my own magnetic pulse machine using a PC power supply 3.3 volts @25 Amps. I sewed wire inside some scrap fabric in a spiral. A 555 timer pulses a MOSFET transistor. Just in case you know a friend who is an EE, they could build one for you.

    Oh, don't forget about tranfer factors. ProHealth has a targeted type for Lyme disease: Immune Transfer C
    http://www.transferfactor.ws/ [This Message was Edited on 12/01/2006]
  4. victoria

    victoria New Member

    altho I'm not sure I could follow all that info about the magnetic pulses... I am operating on about half of my usual sleeptime...

    I had to get up wayyyy too early for me this AM to get him there by 9, and had to drive home in rush hour at end of day. I will have to look at that maybe Sunday after I've had a day to recover! I do know about the transfer factors, somehow I keep forgetting to order it, thanks for the link again.

    u34rb... not sure about exact time spent at target pressure, but believe as much as possible; I wasn't in the room for the whole consult yesterday as I stepped out of the room when the doctor examined my son yesterday, altho my husband was - therefore I missed part of the conversation.

    We did have the option of 1 hour or 1.5 hour sessions, and I do know it follows the 1998 study's recommendations and the textbook's recommendations.... 2.4 is the pressure... this doctor has also consulted with one of the good LLMDs in the northeast who's used HBOT and I think also my son's doctor.

    My son had much better experiences today on both dives, thankfully, he was much more relaxed after this AM than yesterday, plus he'd made sure he'd eaten some breakfast, altho he did experience some panicky feelings toward the end of it --

    -- I felt it was cuz of the lyme and/or bartonella and/or ? dying, as those were some of the very first obvious neuro signs way back when... he'd never had problems like that before age 15.

    By the time we got home after the 2nd 'dive' this afternoon (2 hours later :(( due to Friday afternoon rush hour!) he was really feeling a surge of energy...

    I really have my hopes up... but waiting to see. According to that original study in 1998, something like 91 out of 100 pts experienced major herxes after 5 treatments that lasted until after they stopped treatment, then got better. So I am still keeping my fingers crossed...

    all the best,
    Victoria

  5. u34rb

    u34rb New Member

    I have discussed the HBO treatment of Lyme with the experts in Scotland, and the considered opinion is an initial protocol of 20 sessions over four weeks at 2 ATA. And the time spent at the treatment depth of 2 ATA would be 60 minutes, with a 5-minute air break, (breathing only compressed air, not 100% oxygen), after 30 minutes. So the total time spent inside the chamber would be about 90 minutes, allowing for the time to pressurise, any air break and the time to depressurise.

    Here we would probably use two sessions a day for gangrene. And a pressure of 2.4 ATA would be better for gangrene than 2 ATA. There is a hospital based HBO facility here that treats head, neck and some other major surgery patients at 2.4 ATA and for 90 minutes at this pressure.

    I would not suggest that your protocol is over the top, so long as you continue to get results, and your son can continue to tolerate it. I think it would give the maximum bangs for the bucks, and the 4-hour break between sessions is important. I look forward to hear about further progress.
  6. deliarose

    deliarose New Member

    can i ask how much it costs and whether insurance will cover any of it?

    Urb34: I know you feel HBOT has helped you. But do you know what caused your CFS? Could it be a stealth virus.

    HBOT sounds like a good idea because of its impact on white blood cells etc...

    But I hear so much conflicting stuff.. Cheney thinks its bad for the heart condition he sees in a lot of CFS patients.

    I have no idea if his heart idea even holds water....but it makes me think twic.e

    Best
    delia
  7. ANNXYZ

    ANNXYZ New Member

    I am hoping for the best Victoria.

    How are you progressing with lyme ? Are you having any energy? Do you still feel fluey all of the time ?

    Other things that you might want to consider for you and your son : rife and glyconutrients .

    Ambrotose increases the herx symptoms A WHOLE LOT for me. It is POTENT and other docs are using it with ABX . It has been proven to increase white cell counts .

    There are many folks on lymenet site who testify that they got major benefits from rife machines , many who had
    not had good results with ABX .

    I hope you both get much better!
  8. victoria

    victoria New Member

    but maybe in the end it doesn't matter... I don't know.

    We bought the textbook, 'Textbook of Hyperbaric Medicine' by K.K. Jain published in 2004, and he actually recommends 40 sessions at 2.4 . . . and it was what was done in the '98 study by Fife.

    Well, and I imagine it's not too hard to imagine different groups disagreeing and having different opinions, and it may boil down to - that nasty word again - subgroups of patients responding differently?!

    Delia, I believe the clinic charges $150/session normally, and, for anything other than the 17 diagnoses the FDA approves it for, you will have to find an 'alternative doctor'. This of course lessens the competition as no hospital or university will do it for my son.

    My son has no insurance as he is 19 and not in school, so prior insurance for him was automatically terminated at age 18... and now that he has a history of the chronic lyme, what ins company is going to cover anyway ... & he can't work anyway.

    He has applied for SSI - of course was turned down, it's on appeal... As soon as he was denied SSI, tho, he was then given a Medicaid card; plus, because the ages of 18-21 are sort've a grey area (he's considered a 'child' yet considered an adult by our state), he qualifies for some other type of state program for children.

    The clinic where we are taking him told me they do treat some Medicaid pts, and there's a ruling somewhere that if a therapy can help a patient even a little bit, that Medicaid has to pay for it. We'll see... they seem pretty confident about getting Medicaid to pay for it tho.

    If ultimately they will not, there's a charity program of some sort that will pay half the cost... I guess the rest will be put on account if necessary; we haven't gotten that far yet.

    Ann - I do know about rife and the ambrotose etc... but we don't want to throw too much at one time at him. It's nice to know what is doing what - or not - as the case may be. And don't want to spend any more $$ than we need to. Even tho my son has Medicaid now, they will not pay for his doctor's visits because it's out of state nor any meds rx'd by him.

    I'm doing ok, just haven't been able to get on with phase II because of all this... we also have my MIL with severe dementia with us... just holding the gains I've made...

    all the best,
    Victoria


    [This Message was Edited on 12/02/2006]
  9. victoria

    victoria New Member

    Besides doing a google search, you can also go to

    http://www.acam.org/dr_search/

    (American College for Advancement in Medicine)

    to their find-a-doctor link.

    best,
    Victoria

  10. fmfriend

    fmfriend Member

    He has a hyperbaric chamber in his office. He has a world class clinic to deal with Lyme. Unfortunately the powers that be who want to try to hold back the real treatment for lyme and want to deny its very existance "The medical board" have given him alot of trouble fighting him tooth and nail, because he was using antibiotics and IV therapy which is what I need right now.
    This man is an awesome Dr.,and person who genuonlly cares.He sits with you face to face and cares for you. His intellegance is profound and his willingnes to lay down his very life for the cause of treating lyme is and someday hopefully soon to be commended to the hihgest degree.
    Check out his Web site .. It is JEMSEKSPECIALTY... AND IT IS A .COM
    Please everyone check it out. He is helping alot of fms/cfid people.I believe he is going to make a major breakthrough with FMs/cfids. He uses natuaral supliments, abx, antvirals and such methods as hyperbaricks. And research!!
    Victoria your in georgia right? Hes in Charlotte NC. Not too far from you. I am so fortunate to have found out about him. Check out all the great info on his site there is a drs.area that has alot of info to try to educate the general MD population but its not too technical.
    I went to the clinic yesterday and found out just how sick I am. I am very,very sick.
    I would love to talk to you about my test results or whomever else you would suggest who is up on lyme. Im just learning. There is alot to learn as you know. I need a better understanding of my test result.As you know it takes more than an office visit to learn about all this and I have some questions about my lyme tests.
    I tested CDC standard posative for many strains and also have many virul things going on.
    I cant sem to get on to the lyme board today some glitch I need tech support for.
    I realy want help interperating some things on my tests from you lyme litterate people..which I guess Im going to have to learn too.
    Im glad you've found help with hyperbariks(sp?)
    I hope to try it as soon as I can. I know it will help alot.

    Blessings~ Sally
  11. victoria

    victoria New Member

    and Dr. J IS my son's doctor...

    I took him there immediately in spring 2005 when I suspected lyme (after his 'regular' blood tests showed up normal), thanks to referrals from others in Georgia thru lyme flashnet who told me to not waste time and money with doctors in Atlanta etc...

    it is just that he is 200 miles away, so, to have to live there for a month or so doing HBOT is not feasible for us...

    2 others in my local support group went to see him after my son's diagnosis, and were being helped with abx, but because of the restrictions now and because their tests didn't show up positive according to CDC standards, could no longer get prescriptions from him :((

    One was able to find a doctor to still get them, but not the other.

    I am very thankful my son showed up positive according to CDC protocol not once, but twice... not only now because of theproblems with restrictions, but because he still had a bit of a problem with denial at the time.

    Nothing else showed up on the tests, we spent about $10K just on that in 2005, altho I know the tests for the other possibilities are even more unreliable. We do suspect he has bartonella because of his response to abx for it.

    so when's your next app't? I'll be going with my son in a few weeks actually...

    The saddest thing is that it has been estimated an average chronic lyme pt spends $65,000 to finally get that diagnosis...

    best,
    Victoria

    PS - Hope you are aware of the LDA's petition protesting the IDSA's 'guidelines' on treating Lyme; it's also on the Lyme board, but this way you won't have to wait til Monday to get to the website to sign it.
    http://www.lymediseaseassociation.org/referral/Petitions/Petition.php?id=1


    Also bumping my post about writing your federal reps to support the Lyme bills calling for more funding for research etc.
    http://www.immunesupport.com/chat/forums/message.cfm?id=945193&B=FM#947146



    [This Message was Edited on 12/02/2006]
  12. u34rb

    u34rb New Member

    deliarose,

    I don't know for sure what has caused my 'chronic fatigue with pain', but it could very well be a “stealth virus”. Watch this space!

    I am aware that Cheney considers CFS as contra-indicated for HBO. I don't understand this. In Scotland nearly six years ago my diagnosis indicated HBO for treatment, no questions asked, except I explained that I had read extensively on the subject and considered myself a candidate for HBO. It proved to be the single most important decision in my life.

    I understand your concern lest you should be at risk from a procedure that could change your life too. Perhaps you should consider the difference between HBO in a chronic and in an acute situation. In other words, the role of HBO when you are in expert hands in a hospital ER is different to receiving HBO from a centre that simply treats chronic conditions. For example, you are twelve hours into a complicated labour and your foetus is suffering oxygen starvation, or you are twelve years into a diagnosis of MS.

    In this example, the hospital could treat either patient. But as far as the charity operation providing HBO for MS patients at cost is concerned, HBO for pregnant women is definitely contra indicated. This is because the hospital is equipped with defibrillators, blood for transfusions and other intensive care stuff, but on the other hand the charity is only equipped with tea, coffee and biscuits.

    So is any condition a contraindication for HBO? Well, it depends. An acute case in an ER situation probably not, it’s a mater of clinical balance; but outside of a hospital setting there are cases that can be problematical. And then there are straightforward cases that exclude themselves, such as on account of people who are troubled by what they see as a confined space, etc.

    Only you really know your medical situation; you need to keep in control so it’s your call, but maybe you can make an informed decision after seeking out a medical opinion that takes your concerns and considerations into account. Perhaps you could try out HBO in a hospital setting if necessary initially, and when reassured you can widen your horizons and make arrangements that are cheaper and more convenient for you elsewhere.


  13. Chootik

    Chootik New Member

    Hi Victoria.

    I was waiting to hear about this. This is great. I just saw your post, haven't been here for a few days.

    Is you son still feeling good? Any more treatments since the first one? How much is this whole thing if you don't mind me asking?

    I'm so excited that it worked for him. I hope it will be a lot of help. I'm going to start looking around for this too. I'm finishing up some Neurofeedback and as soon as that is done, I'll have more time to do other stuff.

    Ok hon, thanks so much for the update and keep us posted.

    Warm Wishes
    Chootik
  14. victoria

    victoria New Member

    about 2 hours after treatment he feels a boost, altho it doesn't last - yet .... but can differ each time. So far he has not experienced any apparent herxing thankfully, and part of the time he has been on his antibiotics (he pulses them 2 weeks on, 2 weeks off).

    From what I've read, the real gains start coming actually after treatment; protocol is 40 treatments.

    Payment may be different for everyone depending on where and what your circumstances are. I was told that they expect Medicaid here to pick it up because of certain court rulings that have said if a therapy helps a person at all, whether FDA approved for that illness, that Medicaid has to pay for it... so I'm keeping my fingers crossed. The clinic doesn't seem concerned, we haven't paid anything yet.

    I *think* normally it runs $150/session... and if one doesn't have Medicaid but qualifies financially in other ways, there is a charity fund that will pick up half of that cost, but, I don't know if the charity is state based or state run tho.

    And I'm betting if you check around, different alternative doctors & clinics will charge different fees... it's just that the hospitals and 'typical' places will not treat Lyme pts. Hard to say ifyou have 'regular' health insurance if it will pay but well worth finding out and trying to get an exception made if possible.

    best,
    Victoria

  15. fmfriend

    fmfriend Member

    It is so nice to know someone else who knows my Dr.
    It seems to me he may be really reaserching CFIDS/FMS along with lyme. They are so intermingled in thier symptoms.
    I am really sick right now and havent been able to get on here for awhile thats why I havent responded till now. I open up read a few and fall asleep.
    I dont have an appointment till mid January after his restrictions will be lifted I think.

    He is trying to get my viral overload under some kind of control. Even on 1 gram of Valtrex 2x a day I still came down with active mono again. Fever, spinal headache, bubbles on the roof of my mouth,and ugh!! the fatigue and pain.
    I have to go but Im so glad your under good care. Oh About the big expense . It hasnt cost me more han my usual copay. Im disable, so have medicare and a secondary insurance through my husbands work. Im glad I opted to go to him instead of the FFC. I would be broke and no better off. At least he is smart enough to take it slow because it is senseless to set your self up for a major crash.

    Mabey we can coodinate a visit sometime on the same day and meet. Id love to meet you. I always get so much from your posts.

    I'll talk to you soon.
    Blessings ~ Sally :)
  16. victoria

    victoria New Member

    For whatever reasons (results of tests?) my son doesn't seem to be having issues with virii... many of the LLMDs do feel that CFIDS/FM are caused by Lyme or mycoplasma or one of the other stealth pathogens, bacterial and/or viral ... I know my son had a LOT of tests, can't even remember all of them, but everything was negative but Lyme 2X.

    But you know, that is how I started at 18 - one year of mono along with hepatitis plus the type of meningitis that goes with mono - I was never right after that. But no tests have ever shown it was active.

    From what I understood, the restrictions last one year; he has reorganized as a research clinic, it appears to be a better way for him to go.

    all the best,
    Victoria