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New Lyme disease culture test now available!

Discussion in 'Lyme Disease and Co-Infections' started by richvank, Oct 17, 2011.

  1. richvank

    richvank Senior Member

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    Hi, all.

    A new culture test for Lyme disease has been developed and is now available within the U.S., except for New York and Florida. Dr. Burrascano says this is the real deal. It should make the detection of Lyme disease cases much more reliable. Information is available here:

    http://researchednutritionals.com/Announcements/LymeCultureTest.pdf

    As I think we are all aware, it has been very difficult to detect Lyme disease in many cases, and there have been many people who have carried a diagnosis of CFS for years, only to find out that they actually have Lyme disease. This promises to be the "gold standard" Lyme disease test.

    Best regards,

    Rich
    justinreilly and WillowJ like this.
  2. floydguy

    floydguy Senior Member

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    Thanks Rich. I've seen this picture before. I hope it's true this time. I eagerly await to see what happens. I have several doctors that are convinced that I have Lyme but have never responded to anti-biotics, only to anti-virals.
  3. Esther12

    Esther12 Senior Member

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    Without knowing anything about the particulars of this test, I just want to make a generalised warning about the quackery that surrounds Lyme disease: if you're seeing an alternative practitioner who tells you that you have Lyme disease, there's a good chance that they are wrong. Make sure that you know all the details, and check out the the test being used is respectable.
  4. redo

    redo Senior Member

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    I wouldn't call them quacks esther. They are (in most cases) honest people doing their best to help. Little is known about whether chronic lyme is an ongoing infection or a disease which is triggered by early lyme (exactly like ME is triggered by stuff). Perhaps it would fit into the trigger list I made here: http://forums.phoenixrising.me/show...he-Gut.-Why-we-get-ME-CFS&p=212989&viewfull=1

    What I do know is that many improve, and improve a lot from the treatment. Why? I can't tell for sure. Some also get worse, and some stay the same.
    justinreilly and WillowJ like this.
  5. Esther12

    Esther12 Senior Member

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    I expect that there's a lot of good intentions too, and didn't call anyone a quack... but there is quackery around Lyme disease.

    I don't think that there's much doubt that Lyme disease can trigger long term problems, or that there can be a problem related to long-term infection, with patients with these problems often being poorly treated by more mainstream medicine... but there's a lot of misleading and inaccurate claims around Lyme disease, and I would encourage anyone to be very careful and sceptical of any statements that are being made to them by alternative practitioners. I wanted to make a generalised warning, rather than a specific accusation.
  6. madietodd

    madietodd Senior Member

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    The release says "sensitivity is 80% if the patient is symptomatic at the time of the draw," so this might not be so helpful for people thinking they might be chronic. One of my daughters showed up with concentric rings all over her back and legs - she would have been a good candidate for this. But of course we started her on treatment right away; who would wait 6 weeks to treat suspected lyme?

    So I'm a little confused about the usefulness of this test. I guess it all depends on what they mean by "symptomatic."
  7. floydguy

    floydguy Senior Member

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    The same most definitely can be said of CFS. In my case, I am from New England and most definitely have gotten bitten by ticks and have some of the tell tale signs like Bells Palsy.
  8. soxfan

    soxfan Senior Member

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    I plan on showing this to my doctor...he will definately test me if I want. I have been sick for 7 years with diagnosis of Lyme and CFS. I also live in NE and have been exposed to lots of ticks. I would just be interested in my results no matter what it shows.
  9. Esther12

    Esther12 Senior Member

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    The same certainly can be said for CFS!

    One worry I have is that those who have definitely had Lyme disease, and then go on to suffer from long term problems, can end up getting sucked in to dodgy stuff, because there's so little help available to them from the mainstream. Someone I know well had this happen, and has only recently come to realise that a lot of the medical advice they'd received from a semi-alternative doctor was based upon bad evidence, and that much of the advice probably led to more harm than good.

    I know it's a complicated one, with a lot of uncertainty... but I think that some patients think that the alternative stuff around Lyme is based on more solid science than it is, and I wanted to make it clear that everyone should try to be careful.
  10. leela

    leela Slow But Hopeful

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    Rich,

    Thanks for pointing us to the new test.
    I'm curious why you separate Lyme and ME as decidedly separate. Or do you? Maybe that's not what you meant.

    As someone with a "CFS" diagnosis for six years before discovering I also had Lyme bugs, my presumption was that with a long-term
    immune struggle, any bug you get exposed to that normally would be dealt with swiftly by the immune system is able to gain ground and take hold, going chronic.

    In this sense, I think chronic neuro-lyme people end up with a condition that is essentially ME, and ME people end up with Bb or Ba or what have you as one of the smorgasbord of pathogens that use us as a fancy hotel.

    I've noticed that PWME never have exactly the same combo of bugs, but usually a personalised cocktail mixed from the pool of bugs healthy people live with just fine in latency. So since Lyme is now so very prevalent, it doesn't seem at all unlikely that PWME would be less able to control an exposure than healthies.

    It seems likely to me that it's less an either/or situation, and more a primary/secondary thing. Personally I look at the Bb as just one more ingredient in the pathogenic recipe for ongoing illness.

    I'd love to hear your thoughts.
    WillowJ likes this.
  11. svetoslav80

    svetoslav80 Senior Member

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    Well there are 2 hypothesis: One that CFS is result of some other disorder (say lyme, other bug, or something else) and second- that it is a separate condition, different from any other know disorder that causes chronic fatigue. I have the impression that most people here have accepted the 2nd hypothesis. When I first came here and said that my prostatitis is causing my CFS, they explained to me that in this case I don't have CFS and just prostatitis, causing fatigue.
  12. leela

    leela Slow But Hopeful

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    Thanks for your input, svetoslav. I still don't think it's necessarily either/or. Sometimes, yes, "chronic fatigue" (not CFS) is a symptom of another disease.
    Personally I fit all criteria for true ME. My original Dx was CFS based on high EBV titres and some other stuff, but whether it's CFS ME or Lyme Dx, it doesn't really matter--since none of these illnesses is yet officially acknowledged or curable.

    I don't need a name, I need to not be sick :)
    ggingues likes this.
  13. richvank

    richvank Senior Member

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    Hi, Leela.

    My hypothesis is that Lyme disease is one of the routes into ME for those who are genomically predisposed to developing the vicious circle that involves glutathione depletion, B12 functional deficiency, a partial block in the methylation cycle, and draining of folate from the cells. Therefore, for people who have chronic Lyme disease, I think the treatment protocol should include both treatment for the Lyme pathogens and treatment to lift the methylation cycle block. I conveyed this view to those attending the ILADS conference in San Francisco (I think it was about 3 years ago), and I've been told that several of the ILADS docs have now started doing that and think it has been beneficial to their patients.

    I also believe that there are people who have ME but do not have Lyme disease. I know that there are some folks who think that everyone who has ME also has Lyme, but I don't agree with that, based on the cases I've studied. I will admit that I have been fooled by Lyme disease more than once, not realizing it was there, which has been quite chagrining, not only to me but much more so I'm sure to the people whose cases were missed (as I'm sure you understand all too well), not only by me, but by their physicians, and that's one reason I'm very happy to hear about this new culture test. I understand that it will not catch 100% of the cases, but it sounds as though it will do a lot better than what we have had up to now.

    I think your hypothesis is a valid one, too. ME could certainly come first, causing immune dysfunction, and lowering the person's resistance to Lyme and its coinfections. Prof. Garth Nicolson some years ago reported that he had found that the longer people have been ill with ME, the more infectious pathogens they have. I think that would square with your hypothesis.

    My general view about the infections in ME is that they can be part of what produces the onset, or they can be a result of the immune dysfunction that occurs after the onset. I think the latter mechanism explains why the viral infections commonly found in ME are due to viruses that most of the population carry, but in the latent state. When the immune system becomes dysfunctional, these normally latent viruses reactivate.

    Best regards,

    Rich
    justinreilly likes this.
  14. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    How is this test better than the testing offered by IGenex? I think I had this test done years ago, and of course I have had Lyme testing done by hospitals, but I think those tests are not as good, at least that is my impression of the testing!

    GG
  15. markmc20001

    markmc20001 Guest

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    can somebody post how much the test costs and if it is covered by medicare? That way we don't all have to call? I need to start pursuing lyme I think.

    Thanks
  16. soxfan

    soxfan Senior Member

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    I am pretty certain I had Lyme first and even though treated after being sick 2 + years I now have CFS. I believe that my body being so compromised those years allowed the virus's to become active because the symptoms I had back in 2004 are different than the ones I have now. The fatigue now is much more debilitating and I am unable to do many of the activities I could back then including runnning even when I was first sick.

    In my opinion I did get rid of the Lyme because I was about 85 percent after being on Rocephin but then relapsed into what I have now. I even told the doctor that the illness I had in 2004 is not the same illness as I have now because it feels totally different...I just think I wasn't treated soon enough and even though I was on antibiotics for a long time my body was still very compromised. I am now working on treating the CFS but will still hopefully be able to get the test done anyway..
  17. svetoslav80

    svetoslav80 Senior Member

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  18. calzy

    calzy Senior Member

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    Does anyone know the name of the Lab in Sarasota Florida that Dr. Cheney uses to test for Lyme? I remember that this is the only lab he would use. A dear friend has "maybe" Lyme. Thanks everyone.
  19. markmc20001

    markmc20001 Guest

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    yikes. That's alot of money!
    l'll keep an eye out and hopefully it turns out to be useful.

    Thanks!
  20. WillowJ

    WillowJ Senior Member

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    This is very interesting to me. I got ME first, and then I think I got Lyme disease. Since I did not have proper testing in the first year, it's a little confusing to me how to be sure that I should be treating for it. I did have a small bullseye rash (after being on a hiking trail, not properly hiking, though... then a bad neurological flare). I also saw a very trustworthy MD who felt I should be treated, but I can't treat with him due to location.

    I am now treating with an MD/ND. It is making me worse, which makes most Lyme doctors happy. I will continue for a while, but not indefinitely.

    Having a better test sounds really great to me. :Retro smile:

    Internet disclaimer for posting personal health info: This is private information posted here only for ME/CFS patients, carers, and their families, and Rich VanK, and is not to be posted/used elsewhere or used for purposes other than to directly benefit individual ME/CFS patients or contribute to Rich's work. Please respect our privacy. Thank you.

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