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80% of CFS sufferers have Lyme? Is this true or an exaggeration by LLMDs to make money?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by leokitten, Oct 31, 2013.

  1. leokitten

    leokitten Senior Member

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    I just went to an LLMD for the first time, want to get the more sophisticated Lyme and other pathogen testing. He told me that they are finding 80% of people with CFS are testing positive for Lyme using labs like IgeneX.

    I am very worried because I think in a corner of my mind that these LLMDs, who don't take insurance and are very expensive, are pushing people to turn up Lyme positive to make $$$$ by using labs that might be good but seem to have such a low stringency for what is positive that almost everyone is positive.

    I tested negative twice using the CDC two-tiered test from Quest, but it's very difficult to know by symptoms because the symptoms between CFS and Lyme are the same.

    Has anyone done the IgeneX test and turned up negative?
  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I did the Igenex testing years ago, shared it with my "good" treating Dr of 5 years now, he has gotten feeling much better. I don't think he say anything from the Igenex testing that he thought was worth treating, at least that is my take away at this point and time. I have never been on antibiotics for long period of time.

    GG
  3. vamah

    vamah Senior Member

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    I got a negative igenex test and know someone else who did also. It may have to do with interpretation. Igenex says that to be positive you have to have a certain number of positive bands. Some doctors and others feel that ANY positive bands indicate an infection. I suspect the truth is in between those two somewhere. I still suspect I may have lyme.

    Perhaps 80% of people withcfs who decide to visit a llmd are positive because they have other reasons to suspect lyme and that's why they went to a lyme doctor in the first place.

    Testi g from places like igenex is very controversial. ( There was a very contentious thread on this forum recently.) But the notion that everyone tests positive on their tests is just untrue.
    Wayne, dannybex and leokitten like this.
  4. leokitten

    leokitten Senior Member

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    The thing is though based on symptoms every CFS suffer should suspect that they have Lyme, the symptoms are 100% identical essentially. I posted another thread asking if there were any tell-tale symptoms that could differentiate and no one has an answer.

    I think it is crucial for all CFS suffers to determine as best they can if they have Lyme or other similar pathogen because these infections could have been the root cause to all their other problems and if you treat everything else and not that it is possible that everything will just come back.

    It is unlikely in general that herpesviruses are the root cause and known that Borrelia and other pathogens are seriously damaging to the immune system so after years of chronic infection and immune damage you get an explosion of latent viruses which can be the start of CFS.
    Wayne and SOC like this.
  5. SickOfSickness

    SickOfSickness Senior Member

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    LLMDs can have different interpretations but there is a commonly used standard in the Lyme community though, to trust this one well known Lyme doctor, and doctors who follow his guidelines. It should be easy to find but I forget his name.

    He says which bands matter the most. IIRC you only need one of those bands positive (or maybe two), to be given a positive result. Some bands don't matter IIRC.

    I agree. Also I believe that most of us with ME/CFS have a compromised immune system, and we pick up many common infections.

    I read on a Lyme forum that IGeneX can miss some positives too. Supposedly (IIRC) there is another lab that is even more sensitive than IGX. Sorry I do not remember where I saw this. I am pretty sure of what I read, but who knows where that information came from.
    L'engle likes this.
  6. vamah

    vamah Senior Member

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    In my case, I know that I have been bitten by deer ticks on a couple occasions. I thought I removed them in time and never got a bullseye rash, but not everyone gets the rash. This is a big reason I suspect lyme. Also, I have a low cd57, which can be indicative of lyme. It is true that many symptoms of cfs and lyme are similar, which is why you have to take tests and history into accvount also.

    @SickOfSickness I think the other lab you are thinking of is infectolabs, which does a different sort of lyme test than other labs. It is in Germany, however, so shipping blood there can be expensive and unreliable for those of us not in Europe.
    WillowJ and Valentijn like this.
  7. SickOfSickness

    SickOfSickness Senior Member

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    And as you were saying before, there are LLMDs that would diagnose Lyme even with negative lab results. They would diagnose because of symptoms, and if you remembered having a bite or were in tick-infested areas.

    Good to know. I did not realize they were overseas. I can imagine some LLMDs may not be ok with us using an overseas lab.
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @leokitten

    If you can get the Infectolab LTT test, it is another way of approaching testing. http://www.infectolab.de/index.php?id=51&L=1

    I tested pretty much neg with Igenex (also had the co-infections testing) yet they found Bartonella by PCR in Belgium. Igenex doesn't test for the strain of Bartonella that is being often found in ME/CFS patients.

    My ME specialist tests thoroughly for Borrelia and co-infections and is finding it in many but I don't know the percentages.

    Sushi
    leokitten, Ruthie24 and Valentijn like this.
  9. SOC

    SOC Moderator and Senior Member

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    Having grown up in the midwest, I thought everybody had been bitten by a tick at one time or another. Is this, in fact, not true? o_O

    I distinctly remember camping somewhere in IA or KS on a cross-country trip -- I believe I got 10 tick bites in a single day. No bulls-eye rash that I recall... not that we were looking for such a thing all those years ago.

    I'm starting to wonder if I should be tested again for tick-borne diseases. I had the standard tests (Elisa and Western Blot?) 7-8 years ago and was told I only had 2 bands and more were needed for a Lyme diagnosis. :confused:

    **Sigh** It just never ends, does it?
    vli, roxie60, Ruthie24 and 4 others like this.
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    In general testing for infections is just so inaccurate, hopefully when the whole cfs mess is sorted they will be able to test infections more accurately and distinguish between active and latent infections, and maybe be able to treat them more aggressively??
    Dolphin, WillowJ, Ruthie24 and 5 others like this.
  11. SOC

    SOC Moderator and Senior Member

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    Let's freakin' hope so! :D
    Ruthie24 likes this.
  12. leokitten

    leokitten Senior Member

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    OMG @SOC this is EXACTLY how I have been feeling since last week when I found out that my two negative Lyme tests might be wrong. After everything I am doing to get out of this hell it's like what f***ing else now?
    Ruthie24, aimossy and heapsreal like this.
  13. SOC

    SOC Moderator and Senior Member

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    Lol! And it doesn't get any better as the years go by with this illness. You think you've covered all the bases and then something new pops up. The worst is when I'm confident I've ruled something out only to find the tests or interpretations were no good.
    So far I've been through:
    I don't have herpesviral infections (I had the tests and my GP and a CFS specialist said...) -- Wrong
    I don't have OI (My GP says I'd be fainting if I had OI) -- Wrong
    I don't have immune dysfunction (GP says I'd be dying of something if I had immune dysfunction) -- Wrong
    and there's probably more.

    Lyme (or more specifically -- some tick borne illness) is probably another one of these things I thought I didn't have to try to figure out. Geez! :rolleyes:
    Ruthie24, Valentijn, L'engle and 2 others like this.
  14. JohnnyD

    JohnnyD Senior Member

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    You all are probably aware, but Peterson and Simarron are raising funds to study tic born disease in post infection.

    • Arthropod-Borne Disease in Post-Infectious Fatigue: Simmaron has been awarded access to samples from the NIH directed XMRV investigation to study the presence of antibodies to vector-borne pathogens in 293 highly characterized CFS/ME patients and controls. This study will assess the similarities and differences in exposure to multiple tick and mosquito-borne pathogens among this geographically diverse patient cohort, with the potential to aid in subsetting and identifying a role of infection in precipitating CFS/ME.
    Collaborators: Wisconsin Viral, Sierra Internal Medicine

    Cost: $300,000
    Sidereal, Dolphin, Ruthie24 and 8 others like this.
  15. alex3619

    alex3619 Senior Member

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    The arguments against Lyme, Herpes viruses and Enteroviruses as a cause are all based on old and dubious science. None of them can be ruled out until we have better ways to test for things. All lurk and evade easy testing. We need some way to scan for them in the whole body, not a blood test at all. Perhaps this can be done using some kind of antibody marker, but I doubt it. It will require a whole new generation of technology using some principle that we don't even know about yet. Nanolabels perhaps that can be picked up on a high resolution MRI? I don't know, I can only speculate.

    In any case it may turn out that the pathogen is not important, its what the pathogen does to change our physiology that is important, and that change becomes persistent. Nobody knows yet. I wish we did. We do know that there appear to be distinct human gene clusters that might differentiate between ME and Lyme, but we need more research to be sure, especially since there is also a big overlap in genes.

    My best guess is that Lyme is ME, just ME with Lyme as opposed to ME with Enterviruses, or ME with Herpes viruses. There is no chronic Lyme disease in this view, there is just ME complicated by Lyme, or ME complicated by some other pathogen.
    Alea Ishikawa, Wally, vli and 10 others like this.
  16. Hip

    Hip Senior Member

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    A post made a while ago on this thread may be of interest. Here it is repeated:

    Most of the symptoms of Lyme and ME/CFS are the same, but there are some differences, so here is my brief Lyme versus ME/CFS differential diagnosis, to help determine which disease you have:

    Lyme versus ME/CFS Differential Diagnosis:

    Lyme often causes pain and swelling (fluid buildup) mainly in the large joints, most often the knees; however, in ME/CFS there is pain in the joints, but without swelling. (The joint problems in Lyme are proper arthritis, whereas the joint problems in ME/CFS are arthralgia).

    Lyme often causes muscle stiffness, especially in the neck. However, in ME/CFS, it is more transient muscle spasms (muscle cramps) that occur.

    Facial palsy (drooping muscles on one side of the face, due to paralysis) can occur in Lyme, but not really in ME/CFS.

    If anyone can suggest any more useful Lyme versus ME/CFS differential diagnosis symptoms, please post.

    Further Considerations:

    Of course, added to this differential diagnosis via symptoms, you also take into account the results of Lyme tests, which although not 100% accurate, are nevertheless another useful guideline to help determine the odds of you having Lyme versus ME/CFS.

    And of course you can take into account whether you live in a Lyme area or not. If you don't, this further stacks the odds against you having Lyme.

    And the classic "bull's eye" pattern Erythema migrans rash occurs in about 75% of Lyme cases, so if you never observed any such rash on your body, then again this increases the odds against you having Lyme.

    Some References:

    CDC - Symptoms - Lyme Disease
    CDC - Fukada 1994 Definition of Chronic Fatigue Syndrome
  17. SOC

    SOC Moderator and Senior Member

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    Very likely, imo.

    I wonder if an immune disorder will be the root of illness with the various infections we get just opportunistic infections. Isn't one argument ME/CFS deniers make that these are common infections that everyone is exposed to, so they shouldn't be causing problems? The "shouldn't" part assumes we have normal immune systems, which is the flaw in their logic, of course.

    Of course it's also possible that some as yet unidentified infection is causing the immune dysfunction....
    vli, WillowJ, Ruthie24 and 3 others like this.
  18. Esther12

    Esther12 Senior Member

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    There was this thread on Lyme testing: http://forums.phoenixrising.me/index.php?threads/lyme-testing.25260/

    Any doctor claiming to a patient that 80% of CFS patients have Lyme is really dodgy, and should not be trusted. There's currently no evidence that the 'alternative' testing for Lyme used by some is able to provide any useful information to patients, and the hypothesis that Lyme is a cause of the ill health for a large number of 'CFS' patients who have tested negative with 'mainstream' tests has not picked up any good supporting evidence over the two decades since it was proposed.

    At first, this idea may have been plausible and worth exploring (although only as part of research, and with genuinely informed consent), but if it were true that this testing were of value, there should be some good positive evidence for it by now, and there is not.

    There is some overlap in symptoms between Lyme and CFS, so it could be worth getting tested, but make sure to use testing that has good evidence to show it's validity, as some of the 'alternative' testing available seems to provide no useful information at all, and can just serve to dump patients with inaccurate diagnoses that lead them to inappropriate treatments (and to lose a lot of time, effort and money).

    Best of luck to everyone looking for accurate answers to difficult questions.
    Last edited: Nov 1, 2013
    wdb, Ruthie24, camas and 2 others like this.
  19. alex3619

    alex3619 Senior Member

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    @Hip, I strongly suspect that muscle stiffness is a feature of ME. I don't think it can be used to differentiate between ME and Lyme, or at best is a dubious characteristic.
    peggy-sue likes this.
  20. alex3619

    alex3619 Senior Member

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    The shouldn't part is also based on obsolete science. Its rooted in old dogma. It would however be fair to say that there is no proof these things cause ME, only strong association.
    WillowJ, Ruthie24 and SOC like this.

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