Discussion in 'Infections: Lyme, Candida, EBV ...' started by Andy, Jul 10, 2020.
I’m not convinced all the people he diagnoses with Lyme have it. He re-diagnoses lots of people with ME/CFS as having Lyme so what he may be observing is a lot of POTS in ME/CFS.
I say this everytime Lyme comes up in discussion, but what are the chances of having an ME/CFS-type illness and then getting Lyme ontop somewhere down the line? Quite slim, I'd say. People seem to search for a Lyme diagnosis because it is something that can explain their illness. Actually getting bitten by a tick becomes almost redundant.
This looks pretty dubious. Is it wise for the Mortem group to be tweeting and effectively providing advertising?
Research groups do not normally do that sort of thing.
I'd be interested in knowing what part(s) looks pretty dubious. Anything Lambert is saying in particular, or just the presence of the tweet associated with this Mortem Group?
Btw, I am familiar with neither Lambert nor the Mortem Group, but other than the tickplex reference, I found most of what he had to say simply history and common knowledge. (When he mentioned tickplex I could not help but think of Lipkin's testing platform with a similar name, as I recall.)
I'm one of those slim chances: I got ME in 1983, recovered enough to resume normal life in 1990, then got bitten by a Lyme tick (I had the bullseye rash) in 2001 but didn't know what it was at the time, I thought it was just some weird bug bite and ignored it. Was ill with what I thought was 'summer flu' for weeks, then it subsided but I was not 'right' after that until finally in 2005 I got knocked down with what felt like severe ME all over again, it didn't go away and I became disabled and had to give up work. NHS wouldn't believe I had Lyme (which I had by then learned the 2001 bite must have been) because at first they insisted it didn't exist in the UK, then they said maybe it did and gave me an ELISA test which was negative (as it would be, several years after the bite) and so they said I didn't have Lyme, and simply left me to it with no treatment and to worsen over several years.
I finally stumbled upon someone who recommended a private clinic that is knowledgeable about Lyme - I'm a bit wary of such things but tried it. They diagnosed me on clinical history (including the bite) and a Western Blot test, which the NHS had not used. Was put on a long course of doxycycline and improved dramatically - went from severe ME (so increasingly sick for 8 years I could barely move, had to be taken to clinic in a wheelchair, etc) to moderate (mostly housebound but can walk and be up and about doing things around the house, feel reasonably OK during the day as long as I don't do anything physically exerting). So in sum, the Lyme treatment effected a removal of one 'layer' of disabling symptoms but the ME-specific 'layer' still remains. Just my own n=1 experience, but it is possible.
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