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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Getting Desperate

Discussion in 'Alternative Therapies' started by mirshine, Mar 19, 2017.

  1. mirshine

    mirshine Senior Member

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    So I just seem to be getting worse. I thought it was bad when I was stuck at bad.

    I've ordered a blood test kit from Armin to see if I test positive for Lyme or other infections.

    If it's positive i could get an appointment with a Lyme doctor here in Dublin and do a few years of antibiotics.

    Or I could risk hyperthermia treatment in Germany or Austria. Has anyone any personal experience of it? The place in Germany does two sessions of very high temperatures, which seems risky.
    The one in Austria is a day clinic where they do more frequent but lower temperature sessions. Not sure if that would kill off the bacteria though.

    Am so tired and so sore and so weak.

    If it is Lyme I guess the positive is that there is something to treat. Although after six years I don't know how effective the treatment would be.

    Sorry for rambling. I'm just, I don't even know what.
     
    Mel9, Laelia, Binkie4 and 3 others like this.
  2. Silencio

    Silencio Senior Member

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    I am in the same boat as you, but I've already tried and given up on the antibiotics route.
    Maybe you could do that this year, see how you get on, and by end of year the rituximab study will be published, and Ron Davis may have some answers.
     
    jlynx, Binkie4, trishrhymes and 3 others like this.
  3. trishrhymes

    trishrhymes Senior Member

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    So sorry you're having such a hard time. Hang in there, there is hope on the horizon... At least that's what keeps me going.
    Sending you hugs.
    :hug::hug::hug:
     
    Cheesus, Mel9, Laelia and 4 others like this.
  4. Hugo

    Hugo Senior Member

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    Im in the same situation as you except Im post antibiotic treatment and I couldnt handle the antibiotics. Theres a lot you can do but if it will work is another matter entirely. Herb treatment is a kinder but probably a less effective option, in my case my body seem to like supplements like high quantity of c-vitamin and artemisia annua.

    I had great use of Horrowitz book https://www.amazon.com/Better-Solving-Mystery-Chronic-Disease/dp/1250019400 he go through everything nearly in that book. Even classical ME symtoms like POTS and possible way to handle it and threat it. Also LDN for managing pain in some kind of combination with antioxidants.

    There are new ways to use antibiotics that could be milder and more effective. You just take it two weeks and I think you have two weeks off and then you start again with two weeks. The therapy could consist of high doses of tetracyklin and fluconazole.

    Hyperthermia would make my body go berserk. I have problem just after a long shower. But when I saw the doctor serie The Knick (great serie by the way) he threated his partner who had sypfilis with malaria to give her fever (the goal was to increase her body temperature and kill the syphilis bacteria). In his time antibiotic did not exist. That kind of made me think of this treatment again, but its dangerous I would think.
     
    mirshine likes this.
  5. arewenearlythereyet

    arewenearlythereyet Biscuit Antagonist

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    Don't know what to say about tests and treatments etc, but just wanted to say I hope you come out of this bad patch. Sounds like it's awful for you ATM.

    Part of this rubbish disease is that it does play tricks on you ...it's like the most sadistic rollercoaster ever invented. I remember wishing for an alternative diagnosis...I still wonder from time to time whether I have something else and things are deteriorating when I could be cured. I think this is part of accepting what we have. This is made more difficult with all the controversy and lack of real treatment options .......at the moment....all we can do is hope that we can manage our condition as best we can until the treatment is available.
     
    mirshine likes this.
  6. hellytheelephant

    hellytheelephant Senior Member

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    Don't forget our emotions are affected as part of the illness...and TLC is as vital for your wellbeing as any supplement or treatment.

    It sounds as if you need rest more than anything at the moment. Hang in there- there are literally millions of us hanging in there with you. :hug:
     
    Laelia, trishrhymes and mirshine like this.
  7. mirshine

    mirshine Senior Member

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    Thanks everybody for the support. I really appreciate it. I think before my gp had suggested Lyme again I had accepted the fact that I would be waiting for some research to occur that would find a cause/cure.

    But now I'm all over the place! If it's Lyme that would give something to battle. But there's no guarantee that anything will work. I'd almost prefer to be still waiting for a discovery!

    And then reading Dr. Horowitz's book, all the symptoms of Lyme match ME. So now, running through my head, is what if Lyme causes ME. What if that's what they discover. Then what treatments etc. My poor head is spinning. I almost wish the gp hadn't mentioned Lyme! Unless by some miracle that when I get the blood tests and get the results that, if they're positive, that I'm one of the very lucky ones that antibiotics work with. Then I'll buy him some champagne :rolleyes:

    ARghhhh!!!!!

    I really just need to forget about all of this until I get the kit and then get the results. Easier said than done unfortunately!

    Thanks again everyone xxx
     
    Binkie4 and trishrhymes like this.
  8. Hugo

    Hugo Senior Member

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    Seems wise. Since you not recently got lyme if you have it, theres no need to hurry. Also theres Tickplex coming soon I hope.
     
    mirshine and trishrhymes like this.
  9. mirshine

    mirshine Senior Member

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    I got my results back from Armin today, really quick turnaround. And I am very strongly positive for active Lyme disease, if I'm interpreting it correctly. And chlamydia and coxsackie. As in more than 3 is positive and I got an 11 and a 9 on two of the tests! I called my gp and he immediately faxed off a request for an appointment with Dr L and emailed my results onto him. Jeepers I'm all over the place today. I was shocked. I really thought the results would come back negative. Still. I guess the positive is that there is an avenue to explore and hopefully I'll be one of the lucky ones where the treatment works. Dazed and confused since I saw the email from Armin in my inbox. I nearly didn't want to open it :rolleyes:
     
  10. trishrhymes

    trishrhymes Senior Member

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    A lot to get your head around. Hope this means you'll get effective treatment. Do keep us informed. Best wishes.
     
  11. arewenearlythereyet

    arewenearlythereyet Biscuit Antagonist

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    Good luck with it
     
    Binkie4, Laelia and mirshine like this.
  12. Mel9

    Mel9 Senior Member

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    Good luck! Antibiotics have helped me enormously. I hope they help you. Watch out for Herx reactions. They show that the antibiotics are working but are not pleasant. The doctor will give you advice on how to lessen the pain from Herx reactions. Eventually (might take many months) they should lessen and then stop.
     
    mirshine likes this.

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