IGenex, Positive Lyme Labs NOT of likely value to ME/CFS

Discussion in 'Fibromyalgia Main Forum' started by mindblower, Oct 5, 2008.

  1. mindblower

    mindblower New Member

    For those convinced positive lyme test results from IGenex or any lab for that matter are significant to a ME/CFS diagnosis(ie, taking as fact mere theory of lyme as of central relevance to if not the same condition), the following recent Science Daily article interviewing a U.C. Davis researcher should give you pause.

    Chronic lyme has no diagnostic and anyone suggesting as such is being irresponsible. Chronic lyme remains a likely bogus diagnosis and the profound failure of repeated rounds of antibiotics in the study of thousands suspected of possibly having it weighs against its validity-- a fact vested interest LLMD's and expensive ME/CFS "experts" may not disclose to their patients.

    To sum, keep an open mind, but be careful to NOT let the flies in when talking lyme.


    MB[This Message was Edited on 10/06/2008]
  2. Juloo

    Juloo Member

    Be careful to read exactly what the article says...

    And here I thought mine and my husband's symptoms reversed because of treatment.
  3. lpn9999

    lpn9999 New Member

    I read the article (and the study) and my take is that the scope of this study is much narrower than the headline indicates. One major question in the Lyme world is whether the bacteria can survive despite a course of antibiotics. This study showed that, especially in cases in which initial treatment is delayed, it can (at least in mice).

    The authors, however, wanted to make it clear that this study did not prove or disprove that those surviving bacteria could cause chronic lyme. As they say "further studies are needed": key remaining questions include whether the bacteria are capable of reproducing or will slowly die out.

    A quote from the article:
    [Begin quote]
    "In future studies we need to look at the long-term fate of these bacteria," he [Barthold] said. "They seem to be non-dividing. If so, are they permanently crippled by the antibiotics and eventually would die out, or would they grow back over the long term and cause a recurrence of the disease?"

    While the residual bacteria do not appear to cause disease, they may contribute to the persistence of Lyme disease symptoms, the researchers suggested.
    [End quote]

    The full study is a bit heavier lifting, but at least it's pretty short. Others may interpret the findings differently, but I think the quote below sums up well. It's also worth reading to get their take on finding the bb in the body. Testing was not easy.

    Abstract: http://www.ncbi.nlm.nih.gov/pubmed/18316520?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

    Full Text: http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=18316520

    [Begin quote] Our results show that spirochetes are viable and transmissible and express antigen (based upon immunohistochemistry results) following antibiotic treatment, particularly when commenced during the late stage of infection. However, the few residual spirochetes appeared to be altered in their ability to replicate, and this may explain the lack of inflammation that we noted in SCID mouse tissues. Although overt disease may not be present, the continued expression of lipoproteins by B. burgdorferi may contribute to persistence of constitutional symptoms. Spirochetal lipoproteins have been shown to potently elicit a wide variety of proinflammatory responses (12, 13, 18, 19, 31, 36, 39, 40, 50, 57, 63, 65, 66, 69). This may explain the slow recovery period (termed “post-Lyme disease syndrome”) that has been noted following antibiotic treatment of patients (67). Further studies are needed to determine the eventual fate of the persisting organisms following antibiotic treatment in the context of controlled animal studies.[End quote]

  4. frango2

    frango2 New Member

    I am getting better by treating this bogus diagnosis...

  5. SkeptikSharon

    SkeptikSharon New Member

    I read this article very carefully and do not see where it says that chronic lyme disease is a BOGUS diagnosis. What I see is that they suspect that some of the bacteria has evolved to escape both the immune system and antibiotics. One quote that stood out to me was this:

    "When the antibiotic treatments were completed, DNA analysis showed that small numbers of the Lyme disease-causing bacteria remained in the tissues of the antibiotic-treated mice. Ticks allowed to feed on these infected mice were also able to acquire and transmit the infectious bacteria. Curiously, despite the apparent viability of the bacteria, they could not be detected by standard laboratory cultures."

    This, at least to me, means that antibiotic treatments kill off large numbers of the bacterias, but some small numbers still remain. If they did not, then ticks feeding on those infected mice would not be able to pass it on from there. All this means is that long-term antibiotic treatments may not do any good, and may actually cause more harm than good. That does not mean the DIAGNOSIS is bogus, just that maybe doing more than a couple rounds of antibiotic treatments may be pointless and cause even more harm than good. And it also points out that the bacteria may not be able to be found through our current testing abilities AFTER antibiotic treatment has been given. But what about before? It does not say that previously undiagnosed chronic lyme disease cannot be detected. If you are previously diagnosed, you have probably not gone through the antibiotic treatments, and most likely some bacteria may be detected.

    We should always be careful and consider very carefully our treatment options, whether we have found Lyme bacterias in our blood, or viral or funghal infections. Plus, as of yet, do we even know if having long-term infections can cause permanent changes to the body, perhaps leading to CFS? There is just too much we don't know yet, as is made quite clear in the article.

  6. mindblower

    mindblower New Member

    AND that doesn't discount that occassionally some with an ME/CFS diagnosis with positive lyme test results(like the three I have from three different top lyme labs, though I know I don't have lyme disease nor respond to lyme protocols), respond to certain degrees to antibiotic therapy.

    Unfortunately this fact doesn't prove that lyme got knocked down, IF indeed it was at an infectious level in their bodies in the first place. It's a question in these cases as to what really did happen in them in light of the fact that antibiotic therapy has been shown scientifically to be a profound failure overall(in ME/CFS or whatever we want to call it), positive lyme labs or not.

    The antibiotics used in lyme can knock down c. neumonia, mycoplasmas, h. pylori, and many other bacterial infections too, which even they may simply be present at relatively
    low-below disease causing levels in the body in ME/CFS cases, not at all necessarily what is causing this persistent condition.

    The above link article's U.C. Davis researcher correctly emphasized this point and that speculation aside this for chronic lyme in particular is without scientific foundation. It remains at best a speculative diagnosis, but more accurately stated given the evidence, likely bogus.

    Keep taking those antibiotics if they're really working for you. But skip the assumptions I suggest and more importantly, unnecessary non-diagnostic lyme tests.

    A good LLMD should be able to go ahead and prescribe lyme antibiotics to try in ME/CFS cases without wasted fanfare, time, and your out of pocket money on testing.


    [This Message was Edited on 10/06/2008]
  7. Rafiki

    Rafiki New Member

    Thank you for posting what you did. I totally agree but felt far too much weariness regarding this entire issue to formulate any coherent thoughts.

    There is so much we just don't know. It is all opinion at this point. Everyone is entitled to their opinion but we have not yet reached any consensus or certainty. Although I do not have Lyme, I am being treated with abx. It is a decision I took based on positive experience with abx and sufficient suffering and desperation to make this calculated risk worth taking, for me. I am also mindful of the considerations regarding abx resistant bacteria and the world beyond my body. I put more than myself at risk. The calculations are not easy to make.

    I really think we need to learn to deal with the uncertainty that still shrouds ME, FM, Chronic Lyme, etc.

    We don't know. There is no certainty. I thinks it's better to admit you don't have all the answers when you don't because it allows you to change and adapt to new information more easily.

    I really wish it were possible to have a reasonable dialogue about this issue but I've all but given up hope that it is.

    Thanks again.

    Peace out,

    [This Message was Edited on 10/06/2008]
  8. Catseye

    Catseye Member

    Hi mindblower,

    how did you determine you don't have lyme disease? Maybe you've said somewhere else and I didn't see it?
  9. mindblower

    mindblower New Member

    Are you sure you don't mean "troubled" more than curious that I KNOW this about my ME/CFS case? ;)

    I'm teasing a bit of course and see most post responses to mine so far here are mostly not hearing what I'm actually saying, my key points, which are well reasoned, worth hearing, and from years of research into ME/CFS and lyme no doubt.

    Anyway and to answer your question, simply review my profile, my two posts so far besides this one on this thread, and my posts to another lyme associated thread here just recently.

    These answer your question in as a succinct and complete way as I know possible at the moment.


  10. acer2000

    acer2000 New Member

    There are two issues here that get thrown under the "chronic lyme discussion". They are really different issues.

    The first is people who clearly were diagnosed as having Lyme (had known tick bite, had rash, developed symptoms), then had the "standard" treatment but still had symptoms after the treatment, or the symptoms came back after the treatment. This is really the question of treatment adequacy. This is technically what the "chronic lyme" question centers on.

    The second issue is people who are sick, have symptoms that are "CFS-like", but had never been diagnosed as having lyme and have never been treated with antibiotics. Perhaps they didn't have a rash, or never saw a tick, but nevertheless got sick with a "flu like illness" and didn't get better. These people haven't been treated yet so they are really not the subject of the discussion about "chronic lyme" like in this article. This is also likely to be the majority of the people on this board. The real question in this population is not whether their original lyme treatment worked (because they never were diagnosed correctly at - they were labelled CFS) but whether WB testing for lyme is accurate once the disease is past the "acute" phase. IMHO this is a totally different issue that the "does chronic lyme exist" issue that these articles typically grapple with. Its an issue of diagnostic accuracty...

    I think it stands within reason that if someone has "lyme specific bands" on their WB test, but perhaps not the 5 or more neccesary to make them positive by "CDC research purposes for acute lyme" it is worthwhile to try ABX, especially if they display the symptoms of lyme disease and you have rules out other illnesses causing the symptoms. You might get lucky and hit the right thing, worst case you take doxy for a couple months and you are no better/worse than before. What do you have to loose? Its not like the diagnostic tests for CFS are any more accurate nor the treatments not just as empirical.

    [This Message was Edited on 10/06/2008][This Message was Edited on 10/06/2008]
  11. Rafiki

    Rafiki New Member

    is pointing fingers at each other and saying that we cannot have a reasoned dialogue because of THEM, it's their fault... nothing will change.


    Be the change you wish to see

    ...or understand that you create the problem.

    Peace out,


    arosenbl0 - It is unfortunate that we were posting at the same time because your post is exactly the kind of post I would like to see more. You were the change.

    [This Message was Edited on 10/06/2008]
  12. mindblower

    mindblower New Member

    I agree with you that if someone with an ME/CFS diagnosis feels strongly that they want to try antibiotics for feared lyme disease there is generally no serious side effect reason to not provide them. Their doc ought consider prescribing them to them for a good solid round or more if asked and after explaining that the anecdotal support for their success is very weak in ME/CFS cases historically and the scientific data for cases resembling ME/CFS(which likely are ME/CFS rather than actual lyme disease, I disagree with your characterization about this) is heavily weighted against any antibiotic treatment success.

    This, again, is fact, not an attempt at being inflammatory and the diagnosis of chronic lyme is an issue that needs to be consistently addressed, I disagree with you on this point too. It is a likely bogus diagnosis and calling it this is not actually intended as inflammatory either, as some have taken it and have inferred.

    It is a fair and accurate description based on the evidence I suggest people consider, which, IMO, is important to state or say in similar fashion to help more honestly guide the use of time and money with questionable medical professionals pretending to patients there is more scientific merit to chronic lyme than there really is.

    Then I disagree with you on another point. A decision to prescribe antibiotics in ME/CFS should NOT be based on non-diagnostic testing like the WB(even if it could show one zillion band positivity is still NON-diagnostic, virtually meaningless). This is not good logic, IMO, nor necessary data to proceed with treatment.

    It is sufficient for any well qualified diagnosis of ME/CFS to have a trial of antibiotics simply based on this diagnosis alone, IMO, if that's what one wants to do despite the odds. That small chance that one might respond favorably, as occasssionaly some have, for whatever undiscernible reason that might be, is worth the go of it.

    Compassionate care has its places and doesn't require odds for success in its sails.

    [This Message was Edited on 10/06/2008]
  13. mindblower

    mindblower New Member

    Nice try. I actually missed mentioning how mold was completely ruled out as having any relevance to my case of ME/CFS.

    I don't sense mold is the ultimate cause of any case of ME/CFS, but I respect any "mold warrior" stance that it is a genuine issue, a serious problem, in some or many possibly very serious.

    Though it can be clearly ruled out, IMO, it should not be overlooked and underestimated until one has done so.

  14. munch1958

    munch1958 Member

    How does this article relate to Igenex labs? I read every word of the referenced article and didn't even see Igenex mentioned. Did I miss something?

    I've been on Abx for 2.5 years for chronic lyme. So far I have gotten rid of TMJ, one big long 25 year long daily background headache that never went away no matter what I did, severe migraines, IBS, GERD, asthma, costochondritis, and muscle pain or FM pain.

    BTW, the thing that finally got rid of the headache was heparin. I used that med for 10 months per the Hemex protocol. Google hypercoagulation by Dr Berg or see my profile. My sed rate was 1 and my fibrinogen value was high. During this time, my long standing IgM high titer to candida was eliminated too.

    I test NEGATIVE on all labs including Quest and Igenex in spite of 2 EM rashes and a funky hand rash that looked like ACA. I have many positive Lyme bands. If Lyme is a bogus diagnosis in my case then I'll take it.

    A diagnosis of chronic Lyme beats the heck out of having FM pain, headaches, IBS, endless food allergies, sensitivities to meds, with no hope of a cure. All of those symptoms are gone as is my "chronic fatigue."

    My LLMD isn't telling me to "learn to live with it". He's going about aleviating my symptoms one by one and is NOT pumping me up with ADs and other psychiatric meds. I'm not even on the purple pill anymore!

    Lyme being cured with 4 weeks of Abx has never been proven in any scientific study. The Greater Hartford CT Lyme group has been running a reward for any doc that can prove it is cured in less than 42 days for years. So far no one has applied for the reward money.

    The study conducted by Mark Klempner is the basis for the CDC and IDSA rejecting further Abx beyond 4 weeks. Anyone testing positive for Lyme by PCR was rejected from the study for reasons unknown.

    Please read ILADS position paper on the matter:


    The Science Daily article states that bacteria taken from the mice treated with Abx in their study were capable of infecting other mice. That should be evidence enough for anyone to see that spirochetes are still viable. Yet these authors wrote off this significant finding.

    "Curiously, despite the apparent viability of the bacteria, they could not be detected by standard laboratory cultures."

    Spirochetes are very difficult to culture and can take 8 months to grow in a test tube. The article doesn't outline the steps taken for culturing the Borrelia bacteria either. Were they using BSK culture media? Were they playing the primer shell game?

    Furthermore, I don't see why this discussion is on the main CFS/FM board. Doesn't it belong over on the Lyme board?

    [This Message was Edited on 10/06/2008]
  15. gapsych

    gapsych New Member

    Not to be absolutely certain is, I think, one of the essential things in rationality.

    Bertrand Russell

    Sometimes we just need to accept the fact that we just do not know the answers to every question. Maybe someday in the future, but not now.

    This is very different than opinions.

  16. frango2

    frango2 New Member

    but the words of others here...

    So, let me get this straight. Obviously mice can not describe their symptoms so it would be hard to know if the mice were symptomatic, but there were still viable bacteria found after treatment.

    Try and tell a suffering human that they have active bacteria that yes, can explain your symptoms, but trust us, those bacteria are not causing your symptoms.

    I am not part of the group that is going to say, 'gee, okay, you must be right'.

    Thankfully so, because as I mentioned Lyme treatment is helping me get my health back.

    I agree... no mention of how positive Lab results should be disregarded. I am quite certain if I had disregarded my positive test I would be dead.
  17. SkeptikSharon

    SkeptikSharon New Member

    is calling anything a "bogus diagnosis." That is just offensive on any level. That's just like the doctors who still don't "believe" that Fibromyalgia is real or that CFS is real. Its one thing to say that testing for Lyme is not accurate and does not always show something. Its one thing to say that there are no actual diagnostic tests that positively show FM or CFS. Its one thing to say that antibiotics are not always the cure-all for a patient's problems. But its a whole other thing to call something a BOGUS DIAGNOSIS as that is just not something that anyone can say to any certainty. Even that article did not say that Lyme is a BOGUS DIAGNOSIS. All it said was that they just don't know. That is true for the whole FM/CFS thing. The doctors just don't know yet. The testing that is available is not there yet.

    Should we also say that FM and CFS has no diagnostic testing and that they are therefore bogus diagnoses?

    How about, instead, we just admit that doctors do not always have the answers for us, that we do not have enough testing available to say what is going on with each and every patient, and that there can be a variety of causes for all of our problems?
  18. erica741

    erica741 New Member

    Thanks for posting this info from Dr. Crist's website. I just learned more about the Lyme western blot in the past 5 minutes than in the past 5 months since being diagnosed! :)
  19. simonedb

    simonedb Member

    Hey you guys--sidestepping the issue on lymes validity etc I have a different question after reading this thread. I don't know what specialists to listen to anymore, but I did have a positive reaction to the abx doxy when the dentist gave it to me prophylactially for the first time this year for cleaning, for once I didnt have flare up and felt prettty good the next day.
    NOw its making me wonder if wouldnt be interesting to do a trial of it for couple months. I havent gotten into the testing and trying of longterm antivirals and abx at this point. I have had some cfslike problem for many years though and in the past have felt bad when had brief courses of other abx when sick ( I rarely get really "sick" anymore, just chronic pain and fatigue stuff).

    so my question is, what should I say to get an openminded doc to give me doxy for a couple months? I don't think it would be that easy actually as now a lot of them err on the side of not giving out abx.
  20. gapsych

    gapsych New Member

    Antibiotics can also help with inflammation.

    Then there are those who would have gotten better without intervention or the disease may be self limiting.

    I am not saying this to be negative but to offer other explainations of why ABXs may work for SOME people.

    Food for thought.


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