The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Lyme Disease - Is it a subset of CFS/ME - MUST Reading

Discussion in 'Lyme Disease and Co-Infections' started by LHCTom, Mar 17, 2012.

  1. LHCTom


    Lyme Disease Presenting as Chronic fatigue

    Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome

    Chronic Lyme Disease in British Columbia - The best summary I've ever seen! - A must read for CFS patients
    Jarod and cigana like this.
  2. cigana

    cigana Senior Member

    That is a huge percentage. I believe KDM also reports significant percentages.
  3. slayadragon

    slayadragon Senior Member

    One thing that we know is that Lyme bacteria makes a toxin very similar (but not identical) to toxin made by some species of mold. (Dr. Ritchie Shoemaker discusses this in depth in some of his books, such as "Desperation Medicine.")

    If that is the case, and if CFS is driven in part by the presence of mold toxin, then it would make sense that Chronic Lyme and CFS would present with similar symptoms but be distinguishable by protein analysis.

    However, even if this is the case, in many/most/all cases it's still likely more complex than a case of mistaken identity. For instance, Shoemaker reports (and I agree, based on my observations) that having a history of toxic mold exposure can (for genetically susceptible people) make Lyme disease more severe and more difficult to treat. And having a history of Lyme disease can make subsequent exposures to toxic mold more damaging, he suggests. Apparently the toxins accumulate in the system over the long term and contribute to the illness in additive (or maybe even multiplicative) ways.

    We have enough case studies now to suggest that many/most/all people with CFS react strongly to very small amounts of mold toxin (e.g. contamination of objects stored in certain moldy buildings). Many people who define themselves as Lyme sufferers (including those who got sick following a tick bite) also respond to very small amounts of toxic mold.

    My own suspicion is that the reason that many people benefit from antibiotics to treat Lyme even though they do not show up as having any unusual amount of Lyme bacteria on Lyme tests is that they are reacting to tiny amounts of Lyme toxin, and thus need to get rid of every last spirochete and cyst in order to get the toxin levels down to a level low enough that they're not bothered. It would be nice to see studies on this.

    Dr. Klinghardt, who is one of the most prominent Lyme doctors, recently stated that the most effective way to treat Lyme patients is by looking at their living conditions and having them move if they're getting big mold exposures. And though not everyone in the Lyme community feels that they have the ability to move from bad places, the importance of considering mold is now a regular discussion topic on Lyme boards.

    So I'm going to suggest that it would be a mistake to take away too much from the studies listed above with regard to the idea that a lot of Lyme patients are "misdiagnosed" as having CFS. Rather, I think that Chronic Lyme and CFS are overlapping illnesses, and that both Lyme and mold (including internal fungal infections) need to be considered in all patients regardless of what label they choose to use.

    Of course, if people are going to define CFS as "mystery disease" (to be treated just with palliative drugs such as Florinef), then I can see why rediagnosing that illness as "Lyme disease" would be a step up (even when, as is the case here, treating the Lyme component results only in improvement rather than anything approaching wellness). I think we can do better than "mystery disease" at this point though.
  4. Sushi

    Sushi Moderation Resource Albuquerque



    Your last link doesn't work for me--does it work for others?

  5. slayadragon

    slayadragon Senior Member

    I couldn't read it either.
  6. Old Salt

    Old Salt Rowing the boat

    S/W Pa.
    Having lived with this disease for 40 years, I believe you hit the nail on the head.
    I'm trying a Digestive Enzyme protocol. It's helping already!
    Wayne likes this.
  7. Ember

    Ember Senior Member

    Try this.
    Wayne likes this.
  8. globalpilot

    globalpilot Senior Member

    Wayne likes this.
  9. ukxmrv

    ukxmrv Senior Member

    Lyme disease was one of the exclusions for the original Fukuda CFS dx so maybe what needs to be done is to improve testing so that these cases are picked up earlier. I know that is easier said than done but patients with Lyme need better testing. These groups are full of patients who took years to get a result that they felt was accurate. That's a huge amount of time without what could have been trying to treat the wrong thing.

    Lyme disease can't be a subset of CFS if it's an exclusion for the diagnosis. It's misdiagnosis.

    Either that or common coinfections with all the viral activity we see in some CFS patients. I think until testing improves we just won't know the full story. Also studies on treatment. One report is just one patients story.
    redrachel76 and ahimsa like this.
  10. Wayne

    Wayne Senior Member

    Ashland, Oregon
    Hi Lisa, great post. I think you would find this 7-minute video interesting:

    7-Minute Video -- Dr. Raj Patel interviewed by Scott Forsgren (

    Mold Illness and Its Application for Lyme Disease
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    if lyme is a major issue, what is the success rates of treatment and what type and length of treatments used? I think one big issue is accuracy of testing, almost impossible in australia and dam expensive to get blood sent overseas from way over here. Sometimes i think it might be best to just do the antibiotic protocols and see what happens, might fix my sinusitis up??

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