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Lyme testing

Discussion in 'Lyme Disease and Co-Infections' started by Esther12, Sep 10, 2013.

  1. Tito

    Tito Senior Member

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    I would be tempted to ask: do ME/CFS patients with a positive Lyme test get cured with antibiotics?
    Because if the answer is 'not really' then it is like mycoplasmal infections 10-15 years ago... It is irrelevant.
    I personally do not see the point of testing A, B and C if there are no treatments for these diseases. Of course, I exclude here situations when a diagnosis is necessary to get social security benefits, etc.
  2. Ema

    Ema Senior Member

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    I can't speak for anyone but myself, but I saw my first improvements on abx for Lyme. It isn't a cure but anything that takes the burden off the body is a plus in my book.
    SOC, roxie60, madietodd and 2 others like this.
  3. Tito

    Tito Senior Member

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    Of course, it is always a plus.
    Do you know whether there are studies with percentages on this?
  4. Esther12

    Esther12 Senior Member

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    That is another issue - even if the tests are utterly unreliable, they could still be socially useful! Which is another illustration of the difficult and often ridiculous situation that so many patients are in.
  5. beaverfury

    beaverfury beaverfury

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    If you look for me/cfs recovery stories on the net it can get quite downheartening. But it's a different result if you look for antibiotic treated Lyme disease recovery stories. There's loads of them!

    If you take away dodgy lyme testing and dodgy lyme diagnosis you are left with the conundrum of a lot of ill people recovering on antibiotics for some unknown reason.
    We don't have the same situation with untreated me/cfs.

    As someone with limited medical knowledge I don't have an answer for this. But as someone who has been diagnosed with lyme and has improved on Abx I can say that it has been worth the gamble so far.
    To be sure it's not all beer and skittles, but my number of good days has improved and the intensity of many symptoms has lessened. This has resulted in improved functioning for me.
  6. Vordhosbn

    Vordhosbn

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    If a warning sticky can't be agreed upon, a debate thread like this one would be fair and allow people to make their own mind up. If I was newly introduced to lyme or similar by such a forum, I would appreciate the balance. Although, it may need to be occasionally summarised somehow on the fist page as the thread length increased.
    barbc56 likes this.
  7. Tito

    Tito Senior Member

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    You perfectly point out how the issues are intertwined:
    Can people have both ME/CFS and Lyme at the same time? Or was ME/CFS a wrong diagnosis and people actually had Lyme all the way? Or people had 'contained Lyme' that is now full blown because they 'caught' ME/CFS at a later date? Or Lyme was just acquired during the course of ME/CFS? Or it could be that for some people it was scenario A, for others, scenario B, etc. Or is a Lyme positive test of no relevance because antibiotics would bring in some ME/CFS cases a positive outcome anyway?
    It could explain why some people functionally get much better, slightly better or just no better.
    There might be anecdotal evidence on the web, but a proper study is of course always better. It would be the opportunity to identify the different profiles (if any) and their potential outcome. Antibiotics are cheap compared to drugs like GcMAF, antivirals, etc. I am surprised that there does not seem to be proper studies on the effectiveness of antibiotics for us with or without a positive Lyme test.
  8. barbc56

    barbc56 Senior Member

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    According to the studies, there is no such thing as chronic lyme. If you continue having symptoms after the recommended time, it may be that you are reinfected or something else is going on such as Fibromyalgia. There is late stage lyme diagnosis but that means you are getting symptoms because you were not treated when you got the infection.

    IMPO, I would steer clear of LLMD's and go to an IDSA doctor. LLMDs often go by symptoms that are vague and could apply to many health conditions plus the criteria for diagnosing Lyme from the blood test is not as rigid as the IDSA doctors.

    The attorney General of Connecticut sued the IDSA for neglecting to include long term antibiotic use in their protocal for the treatment of Lyme disease. An independent panel approved by both the IDSA and ILAD came to the following conclusion:

    http://www.theday.com/article/20100423/OP01/304239950

    http://www.idsociety.org/AR_Connecticut/

    http://www.idsociety.org/uploadedFiles/IDSA/Topics_of_Interest/Lyme_Disease/Policy_Documents/Lyme Disease Testimony-Global Health Subcommittee.pdf
    http://www.nytimes.com/2012/11/15/h...oms-of-lyme-disease-study-finds.html?hpw&_r=0

    The full study the above article refers to.
    http://www.nejm.org/doi/full/10.1056/NEJMoa1114362
  9. Ema

    Ema Senior Member

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    The problems with those studies and articles have been discussed ad nauseam.

    Obviously you are entitled to your opinion, but I could not disagree more with everything you have written.

    My LLMD is a board certified internist. My initial appointment lasted over two hours while she took the most comprehensive medical history. These are true investigative doctors for the most part which is what those of us with chronic illnesses so desperately need whether it be Lyme or some other disease.

    Ema
  10. barbc56

    barbc56 Senior Member

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    I have read quite a few posts on Lyme boards and was concerned about the advice I saw there as it is not scientifically based and goes against standard medical practice.

    And yes there is freedom of choice.

    Why do you think the studies are not valid? Could you point me to the other threads/posts? Thanks.
  11. barbc56

    barbc56 Senior Member

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  12. globalpilot

    globalpilot Senior Member

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    I've been wondering lately if it isn't the case that a lot of people being treated for Lyme and recovering might have 'small intestinal bacterial overgrowth'. The treatment for that is short (1-2 weeks) and almost all relapse. But maybe the longer term antibiotics are helping subdue the overgrowth , if it exists.
  13. Ema

    Ema Senior Member

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    The scientific methods can be and are fallible and studies tend to be narrowly focused and biased based on who is funding them. Typically the results papers are not even written by the research authors but often by marketing experts hired by drug companies. It is naive to put one's faith in such studies blindly without recognizing the limitations. You can make studies show just about anything you want. Statistics are easily manipulated. Murine models are criticized as not being representative of the human body. The list goes on and on yet some people still think of studies as the be-all end-all when they are just one tiny piece of the puzzle.

    Anecdotal evidence should not be the end-all obviously either but it should not be disparaged as worthless either. There is a happy medium between the two. Anecdotal evidence should inform unbiased science but that is unfortunately not the world we live in today.

    Google will provide you with a wealth of better written rebuttals to the studies "disproving" chronic Lyme than I ever could do in a short time here.

    Suggesting that people avoid some of the most cutting edge, curious, innovative physicians out there carte blanche is just irresponsible in my opinion. If you send people to a typical mainstream doctor, they will not be tested or examined in any depth in most cases and will leave discouraged and disheartened with a prescription for antidepressants. Who knows how many years of suffering they may go through before trying again? I wouldn't want my words to be responsible for that.

    Standard medical practice for many years for ME/CFS was CBT. Just because something is standard of care doesn't make it right. Medicine should be always evolving.

    Ema
    SOC and Lymelight like this.
  14. barbc56

    barbc56 Senior Member

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    I guess debating the scientific method might be best on another thread. While the scientific method is not perfect I believe the chances of it helping outweigh the harm of medical practice not based on science. I can best sum up my concerns as addressed in the following article:

    http://scientificmethod.com/bpg36_impofsm.html

    Antibiotics can make people feel better as they have anti inflammatory properties.But long term use of antibiotics as suggested by the LLMDs come with huge downsides such as antibiotic resistance. The following recent study found other problems with overuse of antibiotics that directly affect our population.



    Read more: http://digitaljournal.com/article/354041#ixzz2fCY4seqU


    I would have to say that the reliance on just symptoms and of course for some conditions this is the only way of diagnosis, but the list for Lyme is so vague they could fit other conditions which might be overlooked.

    Standard medical practice for me/cfs does not mean the same a condition is treated like ours. Yes studies can be flawed but the ones I site appear to be solid.

    I am not saying people should avoid the treatments recommended by an LLMD but just giving some of the evidence for the other side of the issue. Then people can pick and choose to do what they want.
  15. beaverfury

    beaverfury beaverfury

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    The above, is an article about an article about a review of data.

    http://www.nejm.org/doi/full/10.1056/NEJMoa1114362#t=articleDiscussion

    This is a study only about the recurrence of Erythema migrans in lyme disease. Any connection to systemic symptoms of lyme can only be speculated. Though there's nothing wrong with speculation.

    http://wyss.harvard.edu/viewpressrelease/117/
    Long term antibiotics cause side effects?! Hold the press.

    http://www.idsociety.org/AR_Connecticut/The pdf from this site states-
    "four placebo-controlled randomized trials do not support the use of long-term antibiotics as an appropriate treatment for Lyme disease."

    Yet when you follow up on one of the researchers in the trials cited , http://www.ncbi.nlm.nih.gov/pubmed/23091568
    BA Fallon, on NCBI pubmed.gov, is a member of a team which concludes this-

    A reappraisal of the u.s. Clinical trials of post-treatment lyme disease syndrome
    RESULTS:

    "2 of the 4 U.S. treatment trials demonstrated efficacy of IV ceftriaxone on primary and/or secondary outcome measures."
  16. beaverfury

    beaverfury beaverfury

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    http://www.ncbi.nlm.nih.gov/pubmed/22922244

    This is a new review of some of the 4 randomized clinical trials mentioned in the pdf of the IDSA, quoted above.

    Antibiotic retreatment of Lyme disease in patients with persistent symptoms: a biostatistical review of randomized, placebo-controlled, clinical trials. Nov 2012.

    RESULTS:
    Four RCTs met the inclusion criteria; all examined the efficacy of intravenous ceftriaxone versus placebo at approximately 3 or 6 months. Design assumptions for the primary outcomes in the two Klempner trials and two outcomes in the Krupp trial were unrealistic and the trials were likely underpowered to detect clinically meaningful treatment effects. The Klempner trials were analyzed using inefficient statistical methods. The Krupp RCT was well-designed and analyzed for fatigue, finding statistically significant and clinically meaningful improvement. Fallon corroborated this finding. Fallon also found improvement in cognitive functioning, a primary outcome, at 12 weeks which was not sustained at 24 weeks; improvements in physical functioning and pain were demonstrated at week 24 as an interaction effect between treatment and baseline symptom severity with the drug effect increasing with higher baseline impairment.
    DISCUSSION:

    This biostatistical review reveals that retreatment can be beneficial. Primary outcomes originally reported as statistically insignificant were likely underpowered. The positive treatment effects of ceftriaxone are encouraging and consistent with continued infection, a hypothesis deserving additional study. Additional studies of persistent infection and antibiotic treatment are warranted.
  17. WillowJ

    WillowJ Senior Member

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    If any new testing system did NOT identify more people as having Lyme disease than the current system, there would be a problem because we know the current system misses people with Lyme disease. Research conclusions I got second-hand (I have only so much energy, k?):
    1) it tests only for one strain of Borrelia (from I think the NE of the USA), while we think there are more strains which are pathogenic
    2) people with characteristic rash, known tick exposure, and classic symptoms can test negative to Lyme (and all known coinfections) with the CDC's interpretation
    3) tests in mice show that the current system is incontrovertibly inadequate in mice: while that doesn't always translate exactly to humans, it's reasonable that there is a good chance it does in this case because of the other problems.
    4) the interpretation used by the CDC does not even use an interpretation using the markers most specific to Lyme disease

    I am not sure there are any existing tests which are great, but I am sure that the CDC's test system is shabby.

    The last paper I looked at where someone was trying to demonstrate the CDC's test was valid and superior, they tested the validity of the CDC's test by assuming the validity of the CDC's test. i.e. positive cases were identified by the CDC test, and all the tests were compared to see how well they could identify those positive cases, or some such rubbish.
    snowathlete likes this.
  18. Esther12

    Esther12 Senior Member

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    Any worthwhile alternative test should still be able to hod up under blinded conditions though.

    Ummm - I think some of my posts in this thread been deleted, as there was a section of this discussion I can't find anymore.

    Re some of the discussion above, I think that some confusion can occur because of the different terminologies being used, post-lyme, chronic-lyme, post-treatment Lyme, etc, etc. To me, it does seem that there has been a recognition that Lyme disease can cause serious long-term problems, and that these patients have been mistreated, but the 'mainstream' approach has been very political, and driven by a desire to detach these problems from the alternative testing being used by some, and to brush aside problems with past treatment.

    I really dislike the way in which people in power try to maintain their authority, but these problems don't do anything to validate 'alternative' approaches, or testing which has not been shown to be reliable under blinded conditions. A lot of people with what some now describe as PTLDS have been really badly treated, and I'd like to see more acknowledgement of this, and ideally some level of accountability... but I'm not expecting much.

    Actually, a common theme that I've noticed in medicine is that often there is genuine mistreatment and quackery from those with power at the origins of most patient 'militancy', 'unreasonableness', etc. When one looks at the history of those patient groups that now have a bit of a dodgy reputation amongst doctors, it often leads back to treatment that was clearly morally unjustifiable. Maybe this isn't significant though - it could well be that for all patient groups, you will find that they were treated badly in the recent past. Sickness and disability do not seem to be things people are good at dealing with!

    - sorry for ramble, a bit groggy at the mo.
    barbc56 likes this.
  19. Ema

    Ema Senior Member

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    These labs used by top professionals in the field, such as IgeneX and Infectolabs, are not dodgy in any way shape or form. There is not one shred of evidence to support this idea.

    The best Lyme tests reliably and credibly show whether or not one has been exposed to one of possibly many strains of the Bb bacteria.

    What they do NOT show is whether or not the current symptoms are due to an exposure to Lyme, a chronic Lyme infection or from something else entirely.

    All testing ultimately relies on clinical judgment by a skilled professional in order to make a diagnosis. The same is true for basically all lab testing...should we not do any testing because none of it is perfectly perfect? That seems nuts to me.

    Ema
    roxie60 likes this.
  20. Esther12

    Esther12 Senior Member

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    This study I referred to would seem to show that Igenex were selling unreliable tests.

    Since then, there do not seem to have been assessments of their testing published. This does not inspire much confidence.

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