Hi Klutzo

Discussion in 'Lyme Disease Archives' started by victoria, Dec 11, 2006.

  1. victoria

    victoria New Member

    I'm reposting my post to you from the post about dogs being treated better...

    Haven't seen you in a long time, glad to see you back.... I'm so sorry you're not doing better than you are at this point.

    Have you tried HBOT? Just curious... there are a couple of discussions about it on the Cf/FM board as well as my posts on this board (I'll bump them here)...

    I got really interested in it for my son since he's been on abx for 18 months and progressing so slowly. Of course, as usual, it doesn't help everyone, but there's also a recent article written by a woman who knows she has Lyme and bought her own refurbished unit -- so it was cheap(er) than a brand new one -

    and when she had to have it fixed after using it daily for at least 4-5 years, she realized how much good it had done her. The month she was without it she started going downhill.

    Here's the url:


    We're allowed to give urls if it is a non-profit and/or a non-competing site... and one can (I think) always give what terms to google and which entry it is (ie, it's the 3rd one down)...

    We were thinking of buying a refurbished HBOT unit ultimately if it seems to make a difference in functioning for our son and 40 treatments are not enough (the given protocol for HBOT treating Lyme). The cost for the used units seems to be $10-$15K (new is around $100K), altho I'm not sure how we'd get trained and get the oxygen as it is pure, not compressed 'air'... but we'll cross that bridge if/when we get there.

    There also seems to be some evidence for it helping at lower pressures and maybe compressed air, altho the textbook says that Lyme is an aerobic bacteria, so higher pressures have to be used in order to kill it. So that part is a bit confusing at this point...

    I remember reading -- I think -- you also tried neurofeedback and it helped you cognitively, but you had to keep going to maintain benefits...

    I wonder if there's equipment now that's reasonable that you could buy on your own in order to keep using it more cheaply? We also looked into that as my husband's area was physiological psych. and used biofeedback in clinical practice... but doing the HBOT first... and neurofeedback is not a cure, as you know, unfortunately.

    all the best,
  2. klutzo

    klutzo New Member

    Hi Victoria,
    Thank you for the info about which URLs can be posted. For some reason I could not open the "Message Board Rules" to see if they had changed.

    I cannot afford HBOT. I also cannot afford Neurofeedback. I looked into it, and knew several others who did it, but it proved to be pallative only, like so many other things.

    The few people I know on the other Lyme Boards I go to who have gotten well enough to work again, which is my criteria for "well", have done at least 4 years of alternated/pulsed ABX, usually with concurrent heparin injections to remove fibrolynic deposits that Borrelia hides behind. They still have to go back on ABX periodically.

    Many have also tried HBOT and all sorts of other things as well, so it's hard to figure out what it was that did the trick. They had to spend big bucks though....that was one common factor for all of them.

    I am sorry you turned out to have Lyme. How I long for the days when I thought I had "just fibromyalgia", a mere "glitch in the brain"! I had hope then. Ignorance was bliss.

  3. victoria

    victoria New Member

    However, it appears for once that my son may have 'lucked out' a bit, in that Medicaid will pay for the HBOT here... just won't pay for any of the out-of-state doctor visits or meds rx'd by him. His LLMD doesn't feel the heparin would help, that getting rid of the infection(s) is what counts; hard to say.

    I don't know that I have Lyme specifically; I'm doing the marshall protocol as I don't have insurance & don't qualify for SSD/I, and figured it was the cheapest thing I could try, and have had results... however, I'm stalled because of 'Life', taking care of my son plus MIL with severe dementia.

    Would you believe I'm actually happy somebody caused me to total my car and break my arm 2 years ago? I got a relatively decent settlement, which has been set aside for any treatment necessary for my son firstly... then me, if there's anything left.

    I know he, and I, will have to do meds routinely for the rest of our lives... that is a small price to pay if we can get any of it into remission...

    I find myself being drawn to certain things intuitively, as if my subconscious mind was putting it all together for me... for instance, I still want to also run away to a raw food place for a month, just have this realllly strong feeling it would help even if I wasn't 'perfect' forever after.

    But who knows, maybe sometime someone will come along with a magic bullet... altho I'm not holding my breath...

    all the best,

  4. klutzo

    klutzo New Member

    I am very glad your son's HBOT is being paid for. That is a surprising blessing, considering how tight Medicaid is.

    I hope you are being carefully monitored while on the MP. It is not without risks. I am strongly TH2 dominant, and have a perfect 25D/I25D ratio, so it's not for me. I am allergic to all Lyme-killing ABX anyway (allergies to everything being one sign of TH2 dominance), so I could not do it if I wanted to. Good luck with it.

    You have a very stressful situation there with you being the caregiver for two ill people. It is impossible for just one person to care for a dementia patient, let alone adding a sick child into the mix. I hope you have help. You do need to sleep sometimes, after all! My FIL went crazy trying to care for my MIL after she got AZD, and I mean that literally; he lost his mind! Please take care of yourself.

    I also feel better when I eat mostly raw. Over the yrs. of my illness, I have developed digestive enzyme deficiency, and supplements just are not as effective as eating the raw food which still has the enzymes in it. In order to eat cooked food, I must take at least one enzyme capsule with each meal....more if the meal has legumes, cruciferous veggies, or a lot of fats.

    I understand about the settlement completely! I was a victim of the Dalkon Shield IUD, but did not join the class action suit because I felt it unfair to penalize the company for something one of their scientists did without their knowledge or approval. Since the scientist had no deep pockets, the company was held responsible. Now I wish I had not been such a purist. We desperately need the money I would have gotten...If I had it, I could afford to see an LLMD, instead of treating myself with herbs, or at least see a holistic doctor and get IV glutathione, etc., since I am allergic to ABX.

    I hope you can manage to have a nice holiday.
  5. victoria

    victoria New Member

    altho I understand and admire your motivation, still you had to deal with the problems caused by that scientist.

    I haven't proceeded into 2nd phase yet of the MP simply because I couldn't afford to be herxing at all... but I have had improvements from it. I do have a doctor that I will be touching base with as soon as my blood test results come back, they now want levels of D before proceeding. My D1,25 was high enough to be a possibility and I do have confidence in the doctor that I've worked with.

    I realize that there are risks... and of course my son has been running an enormous risk too with the abx... and well, so did my daughter when she had Rocky Mtn. Spotted Fever and had IV abx, but it saved her life. I guess I view my son's and my situations as the same, that it is a necessary and calculated risk, as I'm afraid we'll end up allergic as well.

    I'm curious, did you ever try the Salt/C protocol? My son tried it while on abx but seemed to get more herxing than he could deal with at the time.

    Well, I try to eat more raw, but it's reallly hard in winter; my body temp usually dips even here in the south. I love hot spices, but have a duodenal ulcer that prevents me from eating much... the one time I was using cayenne capsules, my body temp was up and I felt great --until the ulcer kicked up :( - and no h. pylori either unfortunately.


    [This Message was Edited on 12/14/2006]
  6. klutzo

    klutzo New Member

    Hi V,
    I cannot do Salt/C since I have high blood pressure that is poorly controlled.

    I have found only one thing, other than my Armour Thyroid, that raises my body temperature, and that is supplemental vitamin D. Of course, you won't be taking that on the MP!

    Back to bed now.....happy holidays!

  7. victoria

    victoria New Member

    Thanks Klutzo, hope yours are nice too. We're doing ours early, this Sunday... maybe... depending on how I feel lol ........ or maybe the week after New years?! -- as our daughter will be with her BFs family in Florida for 2 weeks on break from school.

    I actually did try vitamin D about 7 months before doing the MP, and initially it seemed to help, but then felt no effect... all too true of many things for us isn't it! - and haven't felt any worse doing the MP so can't complain.

    Interestingly, my husband has heightened BP, not enough to take meds but enough that his doctor doesn't like it; when he tried the Salt/C just to see what would happen, he felt that he was herxing. And his BP didn't go up... altho I know that it does for some... again, no magic bullets, sigh.

    All the best!

  8. Kimelia

    Kimelia New Member

    What is the mp that you guys are talking about?

    What does cayenne capsules do for lyme?
  9. victoria

    victoria New Member

    So sorry yet am happy for you that you found out you had Lyme!

    The MP is the Marshall Protocol - it has its own website, marshallprotocol.com, and there are articles in the Library here under CF/FM if you do a search there with the words 'Marshall Protocol". The articles also have the website url.

    It is controversial and experimental, but many who did not have luck with long-term abx for lyme or any help from anything else with CFIDS/FM have found it has helped. Not everyone of course. You need to do your homework reading about it and decide if you want to try it. The basic idea tho is that there are stealth pathogens like the Bb spirochete (Lyme) that are disabled by taking a certain type of medication and allows one to take much smaller doses of abx as a result.

    There are also a lot of posts about it on the main CF/FM board, both pro and con.

    Cayenne doesn't have anything that I know of to do with Lyme, I was just remarking that it did make me feel warm in the wintertime - usually I get chilled quite easily, even here in middle Georgia.

    What doctor are you seeing in Georgia?
    all the best,