Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard
Never heard of Invisible Illness Awareness Week? You're not alone. Jody Smith sheds a little light to make it more visible
Discuss the article on the Forums.

Possibly positive news on Lyme treatment UK?

Discussion in 'General ME/CFS Discussion' started by Maria1, Dec 4, 2015.

  1. Maria1

    Maria1 Silence speaks volumes


    I've searched to find the source for this article, but gave up. Looks like it might be a step in the right direction though ...

    The case study sounds alarmingly like me, except I've given up on pushing for diagnosis, and still 50/50 on whether I might have it. I know I'm not alone on PR with that one. I'd add a smiley here, but it's not really funny :ill:

    Now, of course, it's got me wondering whether to take it all on again (My NHS test was negative) but I just can't afford the energy. Just thinking out loud; there is no answer!

    One thing from the article is that it looks like it comes from the Dept of Health. If the DOH included the case study in its press release then that is very interesting, as it publicly admits the test its uses can be wrong. But maybe that's just wishful thinking...
    Last edited: Dec 4, 2015
    maryb and Bob like this.
  2. msf

    msf Senior Member

    From the article:

    One patient who had to wait more than three years for treatment was Laura, who has asked that only her first name be used.
    In January 2012 she noticed a red bullseye rash on her right shin. The rash is the most distinctive feature of Lyme disease, but Laura was not aware of that. A couple of months later, she said, she began to feel “foggy, confused, forgetful”, and it was “hard to make decisions, hard to think, hard to read, hard – pretty much – to use my brain”.
    Despite living close to Richmond Park in west London, where Lyme disease is known to exist, GPs thought the most likely cause was chronic fatigue.

    So the GPs basically said, it isn´t this disease that we know the cause of, it´s this thing that we don´t know the cause of that has the same symptoms. That doesn´t seem like good science to me.

    It still amazes that some people think Lyme is a non-issue in ME patients - they obviously have a lot more faith in doctors than I do.
    Last edited: Dec 4, 2015
    Antares in NYC, Bob and Valentijn like this.
  3. digital dog

    digital dog Senior Member

    I lived next to Richmond Park most of my life. Used to play hide and seek in the bracken.
    Reading more about Lyme I do wonder whether I should bite the bullet and be tested.
    Im so sick of paying for tests and seeing doctors though :cry:
    Bob and Antares in NYC like this.
  4. Antares in NYC

    Antares in NYC Senior Member

    Word! It also bothers me to no end how many doctors use CFS as a dustbin diagnosis. It translates to "I don't know what you have, but I won't bother to look any further... good luck to ya!"

    I'm convinced that in ME/CFS, many paths lead to Rome. And one of those paths could be Lyme. In my opinion, all infectious agents with wily immune evasion strategies should not be discarded as potential triggers of ME/CFS, whether they are viruses, bacteria, mycoplasma or other.
    Last edited: Dec 4, 2015
    Art Vandelay and Mel9 like this.
  5. Bob


    England (south coast)
    I might have bumped into you. I used to go there on my bike, and my sledge in winter. Petersham Hill was fun to go down!
  6. digital dog

    digital dog Senior Member

    Yes!!! Loved sledging down Petersham Hill in the snow and jumping over the stinging nettles in the sun :woot:
    One of my dreams is to go back to the Isabella Plantation early in the morning one sunny day in May. I used to go there feeling so ill that I would love to wander around the flowers feeling semi-normal. Getting tearful now....
    Where on the South Coast do you live Bob? I live there too.

See more popular forum discussions.

Share This Page