Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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A question for you lovely people please? About something I read on FB in the ME chat room

Discussion in 'Lyme Disease and Co-Infections' started by Ellie_Finesse, Jul 6, 2017.

  1. Ellie_Finesse

    Ellie_Finesse Senior Member

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    Someone wrote this on there:-

    'Hi guys I'm looking for some retweets and sharing of this if possible. Our lovely taoiseach or prime minister was quoted as saying that the cdc says there is no chronic lyme disease and that people who say there is are on par with people who say they have chronic fatigue or with the people who say they got ill after the hpv vaccine. Can you help me to show him how many of us there are and that the cdc is not always right.'

    This was my reply:-

    'I'm a little confused by this, I can't find anything anywhere that says the CDC think that Chronic Lyme Disease doesn't exist. However, there is no definition for Chronic Lyme but there is for Lyme Disease. I can't seem to find anything that says the Prime Minister was quoted as saying it either. I'm not saying that he didn't, just that I couldn't find it.

    My understanding is that Chronic Lyme is just a term that is used to describe persistent ongoing symptoms of the disease, like chronic migraines. I might be wrong!'

    I am just curious if anyone has seen this anywhere on the internet? Because I am so nosey, as my son kindly informed me last night lol, whenever I read things I always like to search for it on internet to verify.

    What are everyone's thoughts on this?
     
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  2. duncan

    duncan Senior Member

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    Don't think chronic Lyme. Think late stage Lyme refractory to treatments. I suspect both the IDSA and the CDC would have trouble denying that late stage Lyme refractory to treatments doesn't exist. The issue would be frequency.

    Lyme bacteria have over the past two or three years been proven resistant (i.e.,persister cells) to conventional Lyme treatments in vitro.

    If you accept the widely-acknowledged figure of 10-20% of Lyme patients do NOT stay well following conventional treatments; persister cells may help explain why. Beyond that, Lyme is known to screw up victims' immune systems, making it more difficult to resolve an infection that might otherwise resolve it with a dose or two of abx.
     
  3. Jo Best

    Jo Best Senior Member

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    Apparently, the Irish Prime Minister, Leo Varadkar, said this on live TV in Ireland, so I think the concern for patients with Lyme Disease in Ireland is that this is what the Irish Prime Minister has said is the CDC position.

    A couple of tweets I've seen...



     
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  4. HowToEscape?

    HowToEscape? Senior Member

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    Well, there does seem to be some unclarity around this issue. There are a set of doctors who claim to be 'woke' to Lyme disease which no one else can detect, and who provide treatments such as long-term IV abx which no one else approves of. Patients tend to get worse after seeing these docs, which is written off as "they're getting better, but the hidden Lyme is dying off". That is controversial.

    That tick-borne disease is hard to detect isn't controversial. Lyme isn't always detected easily, and there are several pathogens other than Lyme which are equally nasty and even harder to treat. There can also be long term consequences after Lyme itself is gone. But "Chronic Lyme", meaning an undetectable but persistent disease is most certainly controversial. I'm not qualified to evaluate it on its merits, but to my simple ears the "Lyme Literate Brave Woke Rebel Doc" circle sounds like a scam.

    OTOH, Nature is not your friend and it has a big bag of tricks. A pathogen that confuses or hides from your system seems to be not impossible.
     
    Last edited: Jul 6, 2017
  5. duncan

    duncan Senior Member

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    This is not what is meant by chronic Lyme disease. On a basic level, chronic Lyme disease is Lyme disease that persists for an extended period, e.g. beyond six months, usually despite treatment. That's what makes it chronic. Sometimes it can be detected via conventional tests that support a clinical diagnosis, sometimes it cannot. The concept that chronic Lyme is a label invented by ILADS doctors to attach to a patient that is never 2T positive is a myth. An equally absurd notion is that all - or even most - chronic Lyme patients are patients that never had Lyme.

    Lots of myths and half-truths floating about.

    The way to avoid some of the confusion is not to indulge the chronic Lyme label nonsense, and simply revert to fundamentals. Stick with late stage Lyme. I certainly wish the CDC would.

    But the CDC is highly regarded, and it is unfortunate if not surprising if this Prime Minister embraced its insights.

    It should come as little surprise to any in the ME/CFS community that government agencies can get a disease wrong.
     
    Last edited: Jul 6, 2017
  6. sarah darwins

    sarah darwins I told you I was ill

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    I wonder if it's a reference to some replies he gave when minister of health a coupla years back. He doesn't say exactly what's been suggested on Facebook (no real surprise there) but he sticks to the usual 'expert' line:

    Part of a longer Q&A transcribed here: http://oireachtasdebates.oireachtas.ie/debates authoring/debateswebpack.nsf/takes/dail2015030300030
     
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  7. TrixieStix

    TrixieStix Senior Member

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    @Ellie_Finesse

    I see the term "chronic Lyme disease" used in a couple different ways and not meaning the same thing.

    One being to denote ongoing symptoms that persist even after the Lyme infection is successfully treated. There is talk of the possibility that in some people the Lyme infection triggers an autoimmune reaction which is the cause of the ongoing symptoms rather than an actual continuing active Lyme infection. This being why these people don't get better when given more antibiotics.

    Then secondly there are people who use the term to mean an ongoing active Lyme infection.
     
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  8. Dolphin

    Dolphin Senior Member

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    I believe this was the exchange in the Irish parliament last week:
     
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