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Researchers’ discovery may explain difficulty in treating Lyme disease (new treatments discussed)

Discussion in 'Lyme Disease and Co-Infections' started by Antares in NYC, Jun 1, 2015.

  1. Antares in NYC

    Antares in NYC Senior Member

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    Another major university study funded by the NIH proves that the borrelia bacterium survives antibiotic treatment, and propose two treatments to combat it.
    How many studies will be needed for the CDC to change their flawed guidelines?
     
  2. Hip

    Hip Senior Member

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    This is a very interesting new angle on the treatment and possible eradication of chronic Borrelia infection.

    Though as far as I can see, this has not been tried on patients yet. The study was performed in vitro, on a Borrelia culture.


    Also note that I don't think Borrelia persisters are the same as the altered Borrelia form that some evidence suggests can exist hidden away inside cells, as an intracellular infection.

    Borrelia is pleomorphic, which means that Borrelia can change forms, and exist in different forms, such as this possible intracellular form.

    So although this pulsed antibiotic technique may kill off the Borrelia persisters, if there are also intracellular forms of Borrelia, the pulsed protocol may not necessarily kill these.
     
    Last edited: Jun 1, 2015
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  3. duncan

    duncan Senior Member

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    Yes, this is important, on paper, politically. It demonstrates that IDSA-recommended treatment may not be enough. It is especially good timing with new IDSA Guidelines in the offing, which promise to be more of the same old nonsense.

    Unfortunately, the CDC takes its cues from the same folk that keep the IDSA Lyme team on a short rein.

    But, chalk one up for the good guys. Thanks for posting.
     
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  4. Hip

    Hip Senior Member

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    Are there any politics in the world of Lyme disease? I was not aware of this.

    I know different researchers have different views as to the cause of post-treatment Lyme disease syndrome, with many researchers believing that the symptoms of this condition are likely caused by immune system dysfunction or autoimmunity, or hit and run tissue damage; and other researchers believing that a continued low-level Borrelia infection is the cause of this syndrome.

    But it is quite normal for there to be a range of scientific speculations like these when the truth is not yet know. That in itself is not bad politics.
     
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  5. sarah darwins

    sarah darwins I told you I was ill

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    Q. Is there any practical difference between "pulse-dosing" of abx, and the sort of cycles of abx which doctors like KDM in Belgium are using for suspected chronic Lyme?
     
  6. Antares in NYC

    Antares in NYC Senior Member

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    Hip, unfortunately Lyme has become an extremely controversial issue.

    I agree with your explanation, but the reality is way more complicated than that. The side that claims Lyme doesn't exist is the official association advising the CDC, composed of academic researchers with conflicts of interests with the insurance industry, and holding patents on diagnostic tests and treatments. The same group sets the guidelines on treatment of Lyme, which are ineffective and provide up to 50% false negatives --same diagnostics they profit from. What's worse, this camp has actively waged war (though the legal system and media) against any research that proves borrelia resists antibiotic treatment, or any doctor that strays from their guidelines. Therefore chronic Lyme doesn't exist officially, insurance companies don't cover it, and people are left to suffer immensely.

    Over 260 peer-reviewed studies from all over the world prove the antibiotic resistant nature of the Lyme spirochete, which this group denies in the face of overwhelming evidence. The "Lyme wars" is a clear example of collusion and profit above the interest of the public.

    “In the fullness of time, the mainstream handling of Chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.”

    - Dr. Kenneth Liegner
     
    Last edited: Jun 1, 2015
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  7. justy

    justy Donate Advocate Demonstrate

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    @Hip - I thought you were joking or being facetious at first!

    Yes - the politics of Lyme disease are at least as murky and convoluted as the politics of M.E/CFS - just try getting appropriate testing and treatment and it will all become clear.
     
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  8. Hip

    Hip Senior Member

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    I think you would have to find this out by reading the full study, which should detail the time period of the on / off antibiotic cycles in this pulsed-dosing protocol.

    I did a bit of Googling to try to find this info. I could not find the protocol details for this current study, but it turns out that the efficacy of a pulsed-dosing antibiotic protocol for two Lyme patients was presented in a 1991 paper in the Lancet, which I have copied below.

    You will notice that the pulsed-dosing antibiotic protocols used which cured these two chronic Lyme patients were:



     
    Last edited: Jun 1, 2015
  9. Hip

    Hip Senior Member

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    Right, I did not know that this was another situation just like ME/CFS, where the insurance industry have become involved.

    Pure scientific difference of opinion is one thing; but when, for their own benefit, corporate institutions such as the insurance industry exploit and manipulate these scientific differences of opinions and scientific uncertainties, that is quite another.
     
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  10. sarah darwins

    sarah darwins I told you I was ill

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    Thank you, @Hip - that's great work. It's a bit shocking to see such encouraging results form 1991 and to think that some people are still suggesting there's no illness to treat.

    I do appreciate your work on that. I used up my limited mental resources this morning, researching something else, and couldn't face reading any more literature today. I've bookmarked your post and will read it more carefully tomorrow, and probably print it out. I'm due to see KDM in August for test results/treatment plan (hopefully), and I want to be well-prepared to discuss possible diagnoses/treatments. I have a lot of catching up to do. Thank you.
     
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  11. duncan

    duncan Senior Member

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    Hip, my GP asked me the same question: What Lyme politics? I live in an endemic area. I was floored when he asked me this. Like justy, I thought for sure he was being facetious. When I picked my jaw up from the floor, I tried to explain to him, but I think I fell short of an adequate explanation.

    For every anecdote of treatment success in late stage Lyme, I will wager there is at least one of failure. But the claims of failure are denied because of what really amounts to as two Lyme absolutes: The CDC's Two-Tier diagnostic system is 99% accurate, and virtually all IDSA-recommended treatments are successful, regardless of diagnostics post-treatment. That second rule is aided by the sheer absurdity of the first rule, that Bb diagnostics are that accurate. Yep, the duo of ELISA and Western Blot were almost flawless, until money was invested into the C6 alternative by some of the powers that be, and suddenly, those 2T accuracy rates were not so unassailable.

    Of course, arguably the most obnoxious observation in the IDSA Guidelines may be, when looking at post-treatment Lyme disease symptoms, or chronic Lyme symptoms, the authors observed that patients' claims amounted to little more than complaints about the aches and pains of everyday life.

    Want to appreciate Lyme politics in action? Take a look at the list of NIH Lyme clinical studies that look at either Late Stage Lyme, or that target new treatments for Lyme - you will be hard-pressed to find either. Most efforts are specific to acute Bb diagnostics.

    Don't even get me started with the new vaccine, and the political backdrop to that. Why do you suppose that estimates of annual Lyme cases in the United States recently jumped ten-fold, from 30,000 annually to 300,000?

    I am barely scraping the surface.

    Aach, I just accidentally deleted a long second paragraph. And I kept wrestling with wording, even before that. I haven't got it in me to try to reproduce. Sorry if it's a disjointed read. :(
     
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  12. duncan

    duncan Senior Member

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    @sarah darwins, also, many clinicians will break up treatments, especially long term, because it is perceived as dangerous or unwise to continue lengthy abx therapy unabated.
     
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  13. Hip

    Hip Senior Member

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    Yeah I think in 1991 they observed that a pulsed-dose antibiotic protocol worked on two chronic Lyme patients, but they did not really know why they worked.

    Whereas this new in vitro study offers an explanation how pulsing works, in terms of the study's observation that pulsing kills these Borrelia persisters.
     
    Last edited: Jun 1, 2015
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  14. Hip

    Hip Senior Member

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    Why would the IDSA want to discount the severity of chronic Lyme? What political motivation would they have for doing so? And surely if there are patients with severe symptoms that remain after the acute phase of Lyme, this is hard to deny.
     
  15. Hip

    Hip Senior Member

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    There is a paper here which compares three different routes of administration, intravenous, intramuscular and subcutaneous, of the antibiotic cefotaxime used in the above 1991 Lancet paper.

    From what I can see, subcutaneous administration may be just as effective as intravenous. Subcutaneous has the advantage of being much easier to do.
     
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  16. duncan

    duncan Senior Member

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    Hip, first, the IDSA doesn't just discount the severity of chronic Lyme; it disputes chronic Lyme's existence.

    Second, why minimize patients' complaints? Lots of possible reasons come to mind: The potential role of Insurance interests. Legacy concerns. Ego. Competition (by acknowledging the devastating nature of chronic Lyme, the IDSA would concede a major victory to its competition, .i.e., ILADS). Business (if chronic Lyme were proven, this might cut into the strangle-hold some enjoy on the $500 mill diagnostics industry simply by virtue of demonstrating those diagnostics weren't all that accurate.)

    It is VERY easy to discounts patients' complaints. It happens all the time in the Lyme world.
     
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  17. Antares in NYC

    Antares in NYC Senior Member

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    Hi Hip, while the answer is complex and involves many factors, it mostly comes down to money. Most of the IDSA panel members that set the guidelines for treating Lyme have conflicts of interest and collusion with the insurance industry. They did not disclose these conflicts until the CT attorney general forced them to, during an antitrust investigation of their shady practices in 2008.

    Long term intravenous abx treatment for chronic Lyme is very expensive, in the tens of thousands of dollars. So if chronic Lyme doesn't exist, insurance companies do not have to pay for such treatment, leaving patients to fend for themselves. It's obscene, but it is what's happening. Same as ME/CFS: as long as it "doesn't exist" or it's "all in their heads", insurance companies don't have to pay squat, thus adding to their bloated bottom line.

    We live in the age of profit uber alles, even human suffering. The system is a revolving door, with the same folks setting guidelines and then profiting from them. I fully agree with Dr. Leigner when he says that in the future the handling of the Lyme epidemic will be seen as a shameful episode in the history of medicine.
     
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  18. Hip

    Hip Senior Member

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    Are there any good articles that detail the links these Infectious Diseases Society of America panel members have to the insurance industry?

    I know in the case of ME/CFS, the insurance industry links of several prominent Wessely School "ME/CFS is all in the mind" researchers are well known: Simon Wessely, Michael Sharpe and Peter White all have links to the insurance industry. There are good articles on this; take your pick.
     
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  19. Antares in NYC

    Antares in NYC Senior Member

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    @Hip -- I would suggest to check out the Oscar finalist documentary "Under Our Skin", which narrates the convoluted story of Lyme disease from the perspective of patients and the doctors that treat them. It's quite an eye-opener and exposes the corruption at the core of the group setting and enforcing these guidelines. I believe it's available in Hulu and Netflix.

    Here you have some choice clips:

    Collusion:


    Trailer:
     
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  20. Antares in NYC

    Antares in NYC Senior Member

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    The insurance industry lobby has used the same practices to deny ME/CFS and Chronic Lyme. Some articles that you may find enlightening:

    The Lyme Wars - Michael Specter, The NewYorker
    http://www.newyorker.com/magazine/2013/07/01/the-lyme-wars

    Journalist Mary Beth Pfeiffer, herself a victim of Lyme, has done a tremendous job at exposing this corruption, which in all fairness should be a major scandal. She has written a series of exposes, some of which you can find here:
    http://www.poughkeepsiejournal.com/search/Mary Beth Pfeiffer/

    Here's a very informative chart about the major players at the IDSA: http://archive.poughkeepsiejournal.com/Interactive/lyme_ties/

    http://ire.org/blog/transparency-watch/2013/05/20/foia-request-cdc-took-five-years-fulfill/
     

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