Producer/Host: Magnus Johnstone
Studio Engineer: Amy Browne
Topic: Apocalypse of the Backyard, Part II
What is Lab 257? What is the IDSA vs ILADs controversy? What are the patient advocacy groups for Lyme Disease?
Guest: Randy Sykes of the Greater Hartford Lyme Disease Support and Action Group
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One thought on “Millenialist Special #7 7/23/09”
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Many thanks for such an informative programme. I live in the UK, but the National Health Service here follows the IDSA guidelines on Lyme. As in the US, many people here who have tick-borne infections are misdiagnosed and left to deteriorate. I’m one of them. My health gradually worsened over time from childhood onwards, with flu-like symptoms, foggy brain, fatigue and pains that moved around my body which appeared every few weeks. the symptoms never completely went away. I was told it was all stress-related, or it was a virus, or I was working too hard, or I was imagining it or, more recently, it was all ‘normal’ for my age. A couple of years ago (I’m now in my 50s) the fatigue finally had me on the floor, the level of brain fog and cognitive problems made me think I might have Alzheimer’s and I was having migraine after migraine. I had to give up my work and lost my income. I was written off by the NHS as having chronic fatigue syndrome, but I was pretty sure I had some kind of infection. I thought I was dying and it was very frightening. I found information on Lyme Disease on the internet and finally found a match for all the peculiar and debilitating symptoms I had. I eventually found a Lyme specialist in the UK – there are only 3 of them, and none work within the NHS. I turned out to have 3 different types of borrelia infections, ehrlichiosis and babesiosis. I’ve been on antibiotics for a year so far and, although I’m far from well, I’m already in better shape than I’ve been in for the past 10 years. There are so many of us here in the UK in the same position as I am, and we’re waiting expectantly to find out the result of the IDSA investigations. Thank you so much for spreading the word and educating people.