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Beaver gets Lymed. (Trimethoprim, Plaquenil?)

Discussion in 'Lyme Disease and Co-Infections' started by beaverfury, Apr 1, 2013.

  1. Lotus97

    Lotus97 Senior Member

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    I was happy to know what was causing my illness. I just don't I have any viruses in addition. Since I've had joint pain for the past 5 years I was diagnosed with fibromyalgia (I had various diagnoses before that as well). That seemed to go over better with people, but it still doesn't explain why. And after some research, it seems the symptom list for CFS, ME, and fibromyalgia are almost identical. We still don't know exactly what's going on with everyone and why different illnesses cause the same symptoms.
  2. GcMAF Australia

    GcMAF Australia Senior Member

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    Don Lewis in melbourne says that when GcMAF gets the immune system going, then as it is acting where the problem is , then this causes the effect to be felt where the problem is.
    So the area around the tooth makes sense.
    The Lyme awareness campaigns are hitting pay dirt.
    Every day people are on fb telling of people they have helped, and more awareness.
    Fed govt set up a high Committee at top level.
    may 11th world wide lyme awareness protests.
    many in australia<
    Bell tower to be lit green
  3. GcMAF Australia

    GcMAF Australia Senior Member

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    Toronto's CN tower and the Peace Bridge in the USA and Niagara Falls (Canada, USA border) are lighting up green, Perth's Bell tower and (from memory) Council House (a govt. building) are lighting up green in Australia.
    merylg likes this.
  4. SickOfSickness

    SickOfSickness Senior Member

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    This from your original post is where I am.

    Well, I am not on the fence, treating myself for Lyme is not on my list yet. I see you decided and started last week. I would probably treat myself if my infection was newer, with higher positive levels, and if I had exposure to infected ticks or a definite bite. I agree with the posters who said it's very hard to eradicate. I don't think I can handle going through that.
    GcMAF Australia likes this.
  5. GcMAF Australia

    GcMAF Australia Senior Member

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    Lyme can be chronic,
    lying almost dormant but doing great damage
    The damage is not related to how long ago the tick bite occurred or bacteria levels.
    these trhings just have not been studied.
    The effect of antibiotics is also a very good question.
    Some people are using other techniques
  6. beaverfury

    beaverfury beaverfury

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    Hi GcMAF

    This seems to be what was happening with me.

    I'm not a great detective. It has taken me years to pinpoint a problem in this area.
    At least by taking the leap into drug treatment this problem has uncovered itself.

    I just don't know if it is a co-infection of anaerobic bacteria that has weakened my immune system and allowed lyme to flourish, or if it is actual borrelia that have got into the the jaw area? It's uneducated guesswork for me at the moment.

    Connie Strasheim suggests that long term antibiotic use can weaken your immune stystem.
    This doesn't please me.
    I've told myself that i will only do six months of antibiotics. But...never say never.
  7. beaverfury

    beaverfury beaverfury

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    Hi SOS,

    Did you get positive test results? I'm becoming glad that i saw the ticks on me and that my test results seem quite positive. It at least gives me some clear direction in my head. (Positive outcome is different matter.)
    It's awful not knowing one way or another.

    I'm getting my butt slightly kicked by treatment though.
    Trimethoprim= no sleep. Didn't get to sleep until 3.30am this morning. Normally sleep is not a problem for me.
    But now i seem to be amped up at night.

    Maybe i shouldn't have mowed my lawn yesterday, because today i woke up thoroughly smashed.
  8. GcMAF Australia

    GcMAF Australia Senior Member

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    People are getting diagnosed 10-20 years after a tick bite,
    Some have no recollection of tick bites
  9. SickOfSickness

    SickOfSickness Senior Member

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    I got positive results by ILADS standards. Probably a waste of money if I don't want to do the antibiotics courses the ILADS doctors say I need. I should have spent it on something else.
  10. Lotus97

    Lotus97 Senior Member

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    I had been making a slow, but gradual recovery over the past few years until I started to relapse at the end of last summer. I don't know anything for sure, but I'm thinking part of it could have been Lyme being reactivated. I'm not sure if I would have been better off treating it or not back then, but now I'm too sick to do any treatment.
  11. beaverfury

    beaverfury beaverfury

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    UPDATE. Good news.

    I have made great progress so far. The first three weeks were very hard, mainly because of lack of sleep but also with a little pain and an unpleasant nausea, especially when raising the dose of Trimethoprim.

    The target is 600mg of Trimethoprim. I am at 450mg now.
    At 300mg, and with the aid of some sleeping tablets, i felt pretty bloody good. Just like the old days.
    I didn't get any energy slumps and my body felt clear. No' lack of oxygen feelings' and no 'funny head symptoms'.
    Cognitively i'm good. Bright and happy.(My memory is still unimpressive.)

    The problem is that every time you raise the dose you get a few days of bad symptoms again, but gradually you adjust.

    I felt so good last week that i started drinking red wine for the first time in years, which was a poor idea as it set me back again.
    But i have started to consider employment again and have been more active and social.

    In short, i am amazed at my progress but am still in the process of dips and troughs as i increase medication.
    I guess i wont know for sure how i am until i stop medicating.

    I have to say that benzos are pretty amazing as muscle relaxants as well as sleeping tablets. I have had several days where i woke up with no muscle pain. A completely clear body.
    I hadn't realized that my muscles had been clenching in my sleep, but they must have been to wake up feeling as i have for the last 3 n half years.
    Note: the benzos were my idea, not my doctors.

    I still think part of my problem was some sort of infection in a wisdom tooth cavitation. Maybe that's why i have responded so quickly. But i'm only guessing.
    GcMAF Australia, Sushi, leela and 3 others like this.
  12. GcMAF Australia

    GcMAF Australia Senior Member

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    dental problems and things around the neck and sinuses seem to be a major thing with Lyme.
    also the muscles.
    I am so glad you are getting some where.
  13. GcMAF Australia

    GcMAF Australia Senior Member

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    "In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in history because elements of academic medicine, elements of government and virtually the entire industry have colluded to hide a disease."
    Dr K Leigner
  14. Ema

    Ema Senior Member

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    God, that "shameful handling" list is going to be a long one...hope future generations are better prepared!

    Ema
    GcMAF Australia likes this.
  15. beaverfury

    beaverfury beaverfury

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    Well, well. Things are not so rosy now are they, monsieur beaver?

    I've had three plus weeks of nausea and very poor sleep. Mighty, mighty peeved.

    Shamefully i confess, i need a break from these symptoms so i have dropped my dosage down to a quarter of the recommended trimethoprim dose and half the plaquenil dose.
    In short, i am not hacking it.

    I'm not feeling quite so positive about this treatment now, but my attitude fluctuates rapidly with my wellbeing on any given day. Reading stories of others failing response doesnt help matters.

    Hopefully i can report more positively in weeks to come. It just shows how recalcitrant and unpredictable these conditions are (lyme,me/cfs).
    GcMAF Australia likes this.
  16. Ema

    Ema Senior Member

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    It's not shameful to take a break! You're not failing...it is a marathon, not a sprint. Hang in there!

    Ema
  17. beaverfury

    beaverfury beaverfury

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    Cheers, Em. It certainly is a marathon.

    It's like Mike Tyson knocking me back on my ass every time i stand up.

    Hopefully he will take a drinks break soon.
    GcMAF Australia likes this.
  18. Creekee

    Creekee Senior Member

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    beaverfury: how are you doing these days? Interested in your current take on abx treatment. Hoping you're seeing mucho improvement...
  19. beaverfury

    beaverfury beaverfury

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    Hi Creekee, Thanks for asking.

    Well.... I have made some improvements,( it depends what day you ask me). But i'm still not happy. I could be a lot better.

    I should be grateful. Some symptoms have lessened considerably after 5 months of Abx.
    For instance, I don't get that lack of oxygen feeling where I have to sit down every five minutes while doing something.
    In fact, some days I can tick along all day if I take things easy. I couldn't do that before.

    My gut feels better, and my cognitive ability has improved to the point where I can concentrate well. I have started painting (art) again because of this improvement.
    (Some of the cognitive improvement I could probably attribute to the GAPS diet I had undertaken earlier).

    In five months of treatment I have had about 3 separate periods of about a week each where I felt pretty much back to pre illness health.
    It was great! For the first time in four years my body relaxed and felt free. I had no pain in these weeks.
    But...it didn't last. My body cycles back into illness again. ( I should have diarised this for patterns).

    I am still no better with exercise. I still crash badly if I overdo it. Same as before.
    I still have pain like before, particularly in the morning.

    The symptom which has got worse is my muscles locking up while I am asleep, generally in my neck, shoulders, back and chest. And of course this affects my sleep quality.

    So... all in all, many better days, which I didn't have before, but still many bad days, some spent in bed.

    I should be happy for the improvements but i'm an ungrateful shit. Life is still difficult and my health still fragile.
    I want nothing less than my old body back.

    I'm really confused as to whether I should continue Abx up to 12 months. I don't know if I sounded convinced about the whole lyme thing before, but now i'm undecided.( It changes weekly).
  20. beaverfury

    beaverfury beaverfury

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    I just read my previous posts where I was having much trouble just taking the Abx for side effects and I have to report that it is very bearable now. Once you get a couple of months on the right dosage these side effects lessen and you hardly even notice you're taking them. (Apart from my muscles locking up in my sleep. That's pissing me off).

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