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LYME DISEASE PARLIAMENTARY MEETING HOUSE OF COMMONS 19TH JANUARY

Discussion in 'Lyme Disease and Co-Infections' started by justy, Jan 20, 2015.

  1. justy

    justy Donate Advocate Demonstrate

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    Scarecrow, Helen, Valentijn and 2 others like this.
  2. duncan

    duncan Senior Member

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    I wonder if perhaps areas within the UK can begin to legislate change toward Bb, similar to what is being done, slowly, in the U.S. on a State-by-State basis. Provide a legal safety net for clinicians who treat more aggressively or outside of suggested protocol...
     
  3. justy

    justy Donate Advocate Demonstrate

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    Hey Duncan - i'm afraid our centralised state doesn't work like that. Individual areas don't have the ability to legislate. However, I live in Wales and Wales does have control over its own NHS budget, so thinks could be done on a country by country basis - for example Scotland, because of its higher prevalence of tick borne pathogens has a (slightly) better system.

    I'm afraid that all LLMD has packed up shop here due to harassment by the General Meidcal Council. We have a couple of clinics that only now treat VERY conservatively - only one that can do IV's, and they only ususally offer 4 weeks and it is VERY expensive.

    I don't know what if anything will come out of the meeting in parliament - but patients have really had enough, and like in the states, there numbers are growing rapidly.
     
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  4. duncan

    duncan Senior Member

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    And, of course, if the diagnostics employed have been askew for too many for too long, your numbers may be already greater than is generally acknowledged.
     
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  5. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    The Alliance for Natural Health have an article on the event here.

    I'm beginning to wonder whether I might be a Lymie, as the image of a rash on that page looks familiar. I hadn't realised that a Lyme rash was like that. Not sure though - I may have misremembered.
     
  6. duncan

    duncan Senior Member

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    MeSci, the iconic Lyme rash may be the exception rather than the rule, although when you see it, it's pretty cool. Still, I have clinical records of spider bite reactions that, when those records were reviewed by the NIH, I was informed each could have been a distinct EM rash instead of what the mistaken clinician assumed were spider bites.

    Besides, I've had many tick bites, and several normal bull's eye rashes, as well as some atypical rashes with the tick still embedded.

    Moral of the story - hmmm...no moral. No reason why most clinicians would be aware of this EM tidbit anyway. So, maybe, if you get an odd looking rash of unknown cause, run it by your GP, but don't expect them to be aware that EM's can manifest differently.
     
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  7. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Sorry, but what are EMs?
     
  8. duncan

    duncan Senior Member

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    Sorry. Those iconic rashes have a formal name: Erythema Migrans, ie.EM's.
     
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  9. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Ah right - thanks.
     
  10. Scarecrow

    Scarecrow Revolting Peasant

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    The first time I saw a classic EM rash, I was so shocked I almost fell off my seat. I had ringworm - or not - when I was about 9.So I searched for pictures of ringworm and there was no recognition there for me.

    Around the same time as the 'ringworm', I had unseasonal flu, when no one else I knew did. And for a relatively short while I had childhood arthralgia about a year later.

    The beginning of the ME was a further 5 years later.

    I'm now 46. It isn't a comfortable thought that I could have been Lymed and left untreated for 30 years ahem, I mean 35 years.

    Before ME, did you ever have a flu without major respiratory symptoms but with a screaming high fever, and an extreme all of body ache? The other point that stood out about the fever I had is that it started in the click of a finger. I was half way up a flight of stairs and talking through the bannister to my mum and one of my brothers who were in the hall. One second I felt absolutely fine, the next I swooned. I didn't faint but my legs gave way. It puts me in mind of people who say they could remember to the minute when their ME started.
     
    Last edited: Jan 23, 2015
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  11. Sushi

    Sushi Senior Member Albuquerque

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    I did too, sigh, a long time ago. Now I am being treated for Bartonella and Lyme.

    Sushi
     
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  12. duncan

    duncan Senior Member

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    Sushi, do you think you contracted Lyme and company in New Mexico? If so, I'd be waving that flag in the face of the CDC daily. :)
     
  13. Sushi

    Sushi Senior Member Albuquerque

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    No, probably in North Carolina, though there are lots of ticks carrying Lyme in NM--officially recognized or not!
     
  14. duncan

    duncan Senior Member

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    Yeah, not much better recognition in North Carolina either, but I hear you. They need to be doing a better job in distinguishing strains between different regions, instead of just falling back on B31 as a blanket diagnostic for everyone. This is especially true for western U.S. states vs. their NE counterparts seeing as how different ticks are involved.
     
    Last edited: Jan 23, 2015

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