Julie Rehmeyer's 'Through the Shadowlands'
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Long-term treatment with antibiotics and sensitivity

Discussion in 'Lyme Disease and Co-Infections' started by deleder2k, Jan 5, 2015.

  1. deleder2k

    deleder2k Senior Member

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    Has anyone read "Prolonged antibiotic therapy in PCR confirmed persistent Lyme disease" ?

    While the study called "Two Controlled Trials of Antibiotic Treatment in Patients with Persistent Symptoms and a History of Lyme Disease" concluded completely different.. http://www.nejm.org/doi/full/10.1056/NEJM200107123450202


    How could two trials like this end up with a completely different result? I know they are different in design, but how could the studies end up with two completely different conclusions?

    I am also wondering what the sensitivity is for Western Blot and Elisa.

    CDC says:
    It says that 65% sensitivity is misleading, but how much is it? I've heard 95%, but that information was not from the CDC
     
    Last edited: Jan 5, 2015
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  2. xrunner

    xrunner Senior Member

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    It's usually in the details.

    I could not read the first paper but I noticed a couple of things:
    1.treatment was tailored based on clinical response
    2. treatment went on continuously for at least 6 months (I guess much longer than that)

    The other trial concluded against "long-term" abx treatment but after only 3 months
    which consisted of 30 days of iv ceftriaxone followed by 2 months of 200mg of doxycycline.

    Having being treated for three years on and off I know that, for the purpose of treating a disseminated Lyme, 30 days of ceftriaxone are nothing whilst 200mg daily of doxycycline are ineffective (in my case it worked at 400mg).

    For results I think you need more effective treatment protocols, eg. combinations of abx based on individual response, also considering possible co-infections, and a longer treatment plan which seems what they did in the positive study.
     
    Last edited: Jan 5, 2015
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  3. Aerose91

    Aerose91 Senior Member

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    It seems treatments that are successful are so far and few in between. Who are the doctors who are giving the correct and successful doses of antibiotics and seeing some people have complete recovery?

    My current doctor is against all antibiotic therapy which makes me nervous. Even though I know they are toxic for you in the cases of late stage Lyme it seems not only necessary, but imperative.
     
  4. Valentijn

    Valentijn Senior Member

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    Funny how they don't cite to anything regarding their own statements, or even provide an actual number. Just ... "It's not 65%". They're also referring to the sensitivity of two combined tests, instead of one. I'm not sure how they'd be calculating that, exactly.
     
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  5. deleder2k

    deleder2k Senior Member

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    If your current doctor is against all antibiotic therapy I would go see another doctor.
     
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  6. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I have not looked at the papers in detail but are the results in fact different? Maybe in the controlled trial the percentage improvement was the same - but the same in the placebo group too? Probably not, but if the first study is not blinded and controlled the results are effectively meaningless - just like PACE. Judging by the way it is written and the bad arithmetic (about 38.8 + about 56.7 + about 5.6 = about 101.1) I would not have much confidence in it anyway.

    I think you have to consider these figures in terms of sensitivity to predict that you already know that the patient has definite clinical Lyme disease. If the history does not provide definitive diagnostic evidence (which will be the case for nearly all ME/CFS sufferers) I doubt the figures are helpful. Unless there is some other way of proving infection at a late stage, and I think the whole point is that there isn't, then there is no way of working out how sensitive an antibody test is.
     
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  7. Aerose91

    Aerose91 Senior Member

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    Are abx something that should be done asap or is it more important to get the toxicity down first? I.e. PC therapy and methylation. I don't know if the clock is ticking on the effectiveness of antibiotic therapy.
     
  8. justy

    justy Donate Advocate Demonstrate

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    Havent you had a positive Lyme test? I thought I saw you had. In which case then It would seem appropriate to treat that as soon as possible. I think most people with Lyme have at least 1co infection - they are difficult to test for.

    Dr Horowitz is taking patients and Dr Jemsek -I believe he is in Washington and from what I have read he has very good success rates, but treats very aggressively. Dr H looks at biotoxin illness as well as bacterial load. There is a lot of good info out there onm the Lyme forums etc - I am meeting a lot of people misdiagnosed with M.E when they really had Lyme undiagnosed and many are improving or getting better with various treatments - oral and IV abx, Herbals, homeopathy, Rife etc.
     
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  9. deleder2k

    deleder2k Senior Member

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    I really don't know. I just meant that if you have GP that refuses all antibiotic treatment for diseases you definitely get it for (like pneumonia), I would see another doctor.
     
  10. Aerose91

    Aerose91 Senior Member

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    I had one band pop up for Lyme under LabCorp, then did a more aggressive test (Stoneybrook) and that came back negative. Another quest test came back negative then most recently a quest test popped for 2 bands (39 and 41). I haven't been able to afford the IgeniX test so that's all I'm working from. I really have no idea what to think. However I am working with a couple doctors right now, one is really well versed in methylation and the other is Dr Enlander- he does do IV antibiotics.
     
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  11. Dufresne

    Dufresne almost there...

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    How is it we're reading this first study and talking about the sensitivity of serological testing? This Zecklab in Germany is apparently confirming infection by PCR of skin biopsies. It's in the title of the study. And this was published in 2011.

    http://www.grin.com/en/e-book/16617...firmed-persistent-lyme-disease#preview_footer

    I must be having a bad brain day and missing something. Why is this not replicated or proven false four years later? Why haven't we heard about this?

    I did a search over at Lymenet for "Zecklab" and came up with nothing.

    Does anybody know this lab's reputation?
     
  12. msf

    msf Senior Member

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    'Unless there is some other way of proving infection at a late stage, and I think the whole point is that there isn't, then there is no way of working out how sensitive an antibody test is.'

    I think Prof. Edward's point is a very important one, but there are two sides to it. First of all, this isn't entirely true, as there are new methods (controversial, of course) for confirming Lyme . But if you accept that is currently no way of proving that someone is infected with Lyme, then this has implications for both sides. It means that it is impossible to have total confidence in any claims that a new test is more reliable than an old test, but conversely, it means that it is also impossible to have total confidence that the opposite is the case.

    This means that patients should be wary of both those who claim that the new tests are reliable, and of those that claim that the old tests are infallible. This absence of certainty means that there will continue to be patients (and doctors) who are willing to entertain the idea that the old tests might be fallible, and who, moreover, are willing to undergo treatment for Lyme after testing positive on these new tests.

    I hope that this it is soon no longer necessary for patients to make these judgments themselves, but I am sure that the process of proving Lyme infection by culture will be just as controversial as the process of proving it by antibody tests has been.

    I think it would be more helpful for patients if doctors and researchers were more honest about the limits of their current tests/knowledge, but the adversarial, competitive nature of modern medicine and research means that this is unlikely to happen.
     
  13. optimist

    optimist Senior Member

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    YES! When having been raised by a mom who when she's certain, is always 110% certain, 101.1% seem a bit low.
     
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  14. Daffodil

    Daffodil Senior Member

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    why isn't everyone getting the LTT ELISPOT Borrelia test instead of guessing with Igenex etc.?
     
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Is sinusitis a common symptom with lyme?
    I ask this as i feel alot better on abx for sinusitis and this stops the post nasal drip and severe frontal sinus headaches. I often wonder if it could be lyme. Or sinusitis is just another cfs/me co-infection due to a crappy immune system??
     
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  16. cigana

    cigana Senior Member

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    Yes it is common with Lyme but the problem is, so is everything else! It's almost impossible to distinguish....
    The good news is though at least you understand it might be bacteria related since it responds to abx in you.
    Of course sinus problems are classic with mold, so imo you should seriously look into the possibility of current or previous exposure to damp in your living/work environment.
     
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