HBOT/Hyperbaric Oxygen for LYME son had 1st session today

Discussion in 'Lyme Disease Archives' 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 irritability, added 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 that I'd been doing for about 5 months at the time plus 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.

    SOOOOOOOOOOO --

    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 very irritable initially right afterwards, but since it was by then noon and he hadn't had much to eat, I felt a lot was possibly 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!

    SO 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 with HBOT ... altho the clinic said the few lymies they've treated have felt relief from the pain in particular and have not herxed at all.

    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]
  2. HppeandMe

    HppeandMe New Member

    Yes Victoria!

    Please keep us posted! Is your insurance covering this or are you paying out of pocket?

    If you are paying out of pocket and don't mind me asking. How much are the treatments? How do you find a place that does this type of therapy?

    Good luck!! I am excited for you and your son!!
  3. victoria

    victoria New Member

    cost is an issue for most of us!

    Once he was turned down by SSI on initial application, he was then given a Medicaid card by our state; because of his age he also falls into a 'grey' area as he is 19... qualified for 'extra' care as sort of still considered a child, if that makes any sense, until he is 21. Actually none of it makes sense to me, as one program he did qualify for and one he didn't... At any rate, so far the state won't pay for anything done with the LLMD as the doctor is out of state, won't even pay for RXs from that MD.

    However, the HBOT is being done in-state, and the gal who takes care of the $$ issues told me there was a ruling that said if a therapy would help a person at all, that they (Medicaid) had to pay for it... so she is working on it. I guess they expect that Medicaid will pay eventually as so far they've not asked us to pay anything, and we made our app't 3 weeks in advance...

    But, if they ultimately will not pay for it, there is now apparently some charitable fund that will pay half of it due to his financial circumstances, which would ultimately leave the cash cost at $75/hour -- I believe she said normally otherwise it was $150/hour.

    So, not bad all things considered; it's just that we're having 2 sessions/day 5/week, and I think these sessions will be considered 1.5 units since we opted for 1.5 hours, not 1 hour sessions. I'm not sure exactly how we'll work it out if/when it comes time to pay, but we've been preparing so hopefully it won't be too bad if/when we do.

    He had much more relaxing experiences today (he did 2 'dives'), says he gets a surge of energy within 1.5-2 hours after the session... also reported he'd felt some panicky feelings toward the end of the first session, my feeling is it was a bit of a herx since that kind of feeling was part of what he initially experienced when he started getting ill.

    I am just keeping my fingers crossed, as the original study in US in 1998 reported that it helped many who had failed IV abx etc, 91 out of 100 experienced difficult herxing after 5 sessions that continued thruout the 40 sessions and lasted a while after all sessions were done -- but then got better. I'm hoping he just won't experience any more herxing than he has to the abx...

    Oh - to find a doctor, do an online search, or go to http://www.acam.org/dr_search/
    (American College for Advancement in Medicine)
    to the find-a-doctor link for those who do alternative nutritional etc therapies. Most hospitals and 'typical' clinics will not do this for anything but the FDA approved diagnoses, like gangrene or the bends...

    all the best,
    Victoria


    [This Message was Edited on 12/01/2006]
  4. kellyann

    kellyann New Member

    What exactly is this HBOT treatment that your son is receiving? Can you tell me what it is like? Is it some kind of oxygen treatment?

    I am still taking the Bicillin LA injections twice a week. I think it is helping. I think I am starting to feel better. I am super tired though. Especially the day after I take the injection I am wiped out. So I figure it is fighting the Lyme and I am having a lot of die off. I hope it's die off anyway!

    I wish you and your son all the luck in the world with the new theraphy!
    Take care!

    Kellyann
  5. victoria

    victoria New Member

    It is pure oxygen at a high enough pressure to kill the spirochetes and any other bacteria, aerobic or anaerobic. His doctor in NC offers it but it is too far away to do on a regular basis. I bumped my initial post about an article posted in the newsletter from prohealth/immunesupport where a woman found HBOT made a huge difference in her life.

    We had to find an 'alternative med' clinic to do it as the hospitals and most clinics will not do it for anything besides the few FDA approved conditions/diagnoses like the 'bends' (that scuba divers can get from coming up too fast) or for wound healing or gangrene.

    We are hoping it will expedite treatment... from what I've read, most gains are seen after treatment ends... and suppose to work better if you're also on abx treatment... and has helped those for whom abx have failed.

    That is GREAT you are feeling better! I am so happy for you, hope it won't take too much longer to be done with it basically!

    all the best,
    Victoria


    [This Message was Edited on 12/04/2006]
    [This Message was Edited on 12/04/2006]
    [This Message was Edited on 09/17/2007]
  6. victoria

    victoria New Member

  7. Chootik

    Chootik New Member

    Hi There.

    Happy New Year! Hope 2007 will be a great year for you and your son.

    I was wondering what's the update on the HBO treatments?

    Are you seeing a big difference yet? I still haven't found one around here and dont' think I can afford one right now anyways.

    Keep me posted if you get a chance

    Thankx
    Chootik
  8. victoria

    victoria New Member

    Hi Chootik, thanks for asking...

    We saw his LLMD 12/19 at which point my son was not feeling too well: hyper-irritable and hyper agitation, started having violent dreams... his LLMD said immediately to take a break from everything, and told us he did it a little differently as to pressure and frequency, which we are going to try - ie, take it a lot slower.

    The new protocol will basically be to weekly do 1-2 days of one session of HBOT/day while taking abx, and only do it 2weeks/month (both abx and HBOT).

    He was due to start back today but has the flu... but I also think he is going down because of certain symptoms worsening, so told him to start the abx anyway.

    Time will tell... herxes are as bad as the disease all too often, and he goes backwards so easily, it's like walking a fine line.

    And again, I/we have to remember that it doesn't help everyone with lyme, just like everything else. :(

    good luck with what you're doing - how are you doing?
    Victoria


    [This Message was Edited on 01/08/2007]
  9. kriket

    kriket New Member



    How much do they charge for the oxygen chamber therapy?

    Kriket
  10. victoria

    victoria New Member

    Sorry to just now be able to answer, I haven't been on in a while...

    The charge is normally $150/session... think it is for 90 minutes... not sure what other clinics charge, as I'd called first the closest one which was open to dealing with Medicaid as it happened (thankfully). Just keep in mind it probably needs to be an 'alternative med' clinic.

    best,
    Victoria

  11. Chootik

    Chootik New Member

    Thanks for the update.

    Hope your son is doing better now! I still haven't tried the HBO. I think for now that's on the back burner.

    I'm doing ok. Lyme is active though. MY NK57 test came back way low so I know the damn thing is active.

    I'm still on Cumand/Samento. I am doing another IGENEX Test this Friday and according to that probably will start a course of Antibiotics. I also got a Lyme Transfer Factor from doc, seems to be working. If you want I can give you details, you might want to try for your son.

    I'm still working on detox. It's just really hard to do everything when you're working full time and trying to get better! I wish I didn't have any bills to pay so I could consentrate on this and get better once and for all.

    Anyways, good to hear from you and good luck with everything.

    Hugs.
    Chootik