Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Word of mouth about remarkable recovery

Discussion in 'Lyme Disease and Co-Infections' started by the_phscale, Jul 24, 2017.

  1. the_phscale

    the_phscale

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    Hi all

    I have an acquaintance with diagnosed Lyme who may have stumbled on something that really did the trick for her. After being sick for I think about three years, she was clued into a treatment called "hyperthermia" where her internal body temperature was raised to over 100 F three or four times over the course of a week. There were some other things involved with the treatment: I know that she had a PICC line in for a while, as well as some other supports.

    Now, just a few weeks after concluding hyperthermia treatment, this person is going to the gym! and doing three mile hikes! and even talking about going back to work part time! She's totally off prescription meds and now just has an herbal protocol. The treatment certainly seems to have worked for her.

    The reason I'm posting here and not asking her about it directly is because this has clearly been a big step forward for her, and I don't want to be a negative nelly coming in and asking all these questions about the legitimacy of the treatment. But, I guess I just find it hard to believe that a person could go from IVs and fairly invasive procedures like having lines placed to rock climbing in so little time. What do you all think? Is she in for a big crash? Could the hyperthermia really have killed off all the Lyme bacteria, just like that?
     
  2. Valentijn

    Valentijn Senior Member

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    This is an ME/CFS forum, not a Lyme forum. Some patients here have been diagnosed with Lyme, but they also have ME/CFS. Lyme is curable with antibiotics, ME/CFS has no known cure.

    Hyperthermia would make most of us very sick. Generally we have trouble tolerating temperature fluctuations, likely due to autonomic dysfunction. Circulation just doesn't happen very effectively for cooling sufficiently.

    That would be IV antibiotics, which are known to treat and cure Lyme. Such a treatment would be expected to cure your friend, especially since there's no indication she has ME. I had a Lyme infection, and experienced some improvements following treatment - but I very much still have ME/CFS.

    Hence her story isn't particularly relevant here, even if the hyperthermia treatment were relevant to her recovery or possible for us, both of which I doubt.
     
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  3. trishrhymes

    trishrhymes Senior Member

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    I just tried googling fever therapy and the first 6 entries all mentioned Lyme disease, including one about quack treatments.

    Also called pyrotherapy, used 100 years ago (before antibiotics) for lots of things. Temperatures raised to 105 F, (41C). Could be dangerous - certainly not something to try at home.

    I think the idea was that fever is the body's way to help fight infection by killing the bugs, so inducing fever might help with chronic infections. No idea whether it worked.

    It seems more likely to me that it was the other treatments, probably including antibiotics that helped this person.
     
    Little Bluestem likes this.
  4. duncan

    duncan Senior Member

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    Except, of course, for those many cases it isn't.
     
    Dufresne, Mel9, sb4 and 5 others like this.
  5. Hip

    Hip Senior Member

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    That is very interesting, @the_phscale.

    I just started Googling a bit on hyperthermia for Lyme, and found out that it was Dr Friedrich Douwes in Germany who discovered this combined hyperthermia + intravenous antibiotics treatment for Lyme, in around the year 2000:

    How I Discovered Hyperthermia for Lyme Disease and Why It Works

    According to the above article, not only does the heat help kill Borrelia, but the heat also amplifies the activity of the antibiotics:

    In terms of the cure rate with this treatment, Dr Friedrich Douwes says in the article it's about 60%:

    And then he says another 30% of Lyme patients improve on the treatment, but are not cured:
    There is an old PR thread on the subject: Hyperthermia treatment for Lyme & Co.

    And someone on PR who went to Germany for the hyperthermia treatment, and got some improvements (but not a cure): Extreme Whole Body Hyperthermia

    However, I can't find many reports online about Lyme patients being cured from this treatment.

    A clinic in Utah offers hyperthermia for Lyme (along with other simultaneous treatments).
     
    Last edited: Jul 24, 2017
    Little Bluestem, Mel9, sb4 and 5 others like this.
  6. the_phscale

    the_phscale

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    @trishrhymes and @Hip, thank you for sharing the information that you found! It sounds to me as though this treatment does have scientific validity, as the increased body temperature improves antibiotic functioning and creates a more hostile environment to Lyme bacteria. I'm very happy for my acquaintance that she was one of the people for whom this treatment really does the trick!

    Given the risks associated with hyperthermia (including the fact that proteins start to denature at temps that high, and brain damage is a possibility), I can see why its a treatment reserved for those who have exhausted all other options. I'll stick to my oral antibiotics for now! But I hope this thread is helpful to others looking for a cure for Lyme. It may not be an option for those with ME/CFS and Lyme, but I started on this forum with a general diagnosis of "we don't know so lets call it CFS" which was later revised to Lyme and co-infections.
     

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