lyme disease research

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13d
Posts: 40
Joined: Wed Oct 04, 2017 9:28 am

lyme disease research

Post by 13d » Sat Jun 23, 2018 5:40 pm

yo! yo!

as some of you know, i've been pretty messed up health-wise over the past few years & stuggled to get the appropriate treatment as my condition is not recognised very well in the uk.

i collapsed around 3 years ago whilst living china & have been majorly fatigued since, with a page long list of other unpleasant symptoms going on. lyme disease was something that kept coming up due to my symptoms, so i eventually had a test on the NHS which was negative...

i didn't think too much more about the test until a bit later, as it just kept coming up as a possibility. i did a fair bit of research & found that the standard NHS tests for lyme can be negative, even in some of the worst cases of lyme, for several reasons.

with this in mind, i tested privately with a specialist lab in Germany & my test results showed active infection with Borrelia burgdorferi (lyme) & Babesia microti (a malaria-like blood parasite).

i thought yay! finally an answer & now i can get some treatment.. nah, the test results were dismissed as "irrelevant" by the infectious disease dr here.. the test i had is not validated for testing lyme apparently, although it's accepted by doctors overseas.

after a few months of expensive private homeopathic treatment, around a month ago i had another private test to check how things were going - several lyme-related infections were identified from antibody response & Babesia (malaria-like blood parasite) was again indicated as being active.
this test IS validated & i've issued it to my gp, neurologist & it's been forwarded to infectious diseases - still, i've heard fuck all back :twisted:

anyways.. some of you may be familiar with John Caudwell (billionaire, phones4u guy).
he & his family have been suffering from lyme for years & they were tested using the same lab as me, i think, in Germany.

on Monday, John is making a live announcement on facebook & he has requested support from all lyme patients, families, friends etc. for his proposal. i think this is going to be a strategy for research, better testing & treatment for lyme patients, so many who have basically been left to rot

how can you help? if you have a spare minute or so, you can watch this facebook video / send the template email at the top of the comments section to your local mp & a copy to jeremy hunt.. every email counts & this could go a long way to finally getting this horrible illness recognised by doctors here (i know more about lyme than most doctors i've spoken to in the UK, it's ridiculous) and help the many, many suffering now & the people who will contract this in the future.

so yeah, if you're bored & wanna help, you can have a watch + send an email ♡ thank you

http://www.info.doh.gov.uk/contactus.nsf/memo?openform (Jeremy Hunt email, template can be found in link below, top of the comments section)

https://www.facebook.com/johndcaudwell/ ... f=mentions

steve
Posts: 259
Joined: Sat Sep 30, 2017 6:14 pm

Re: lyme disease research

Post by steve » Wed Aug 01, 2018 5:49 pm


mishmosh
Posts: 117
Joined: Sun Oct 01, 2017 11:08 am
Location: UK

Re: lyme disease research

Post by mishmosh » Thu Aug 02, 2018 10:43 am

In case you missed it, there was an item on Lyme Disease on BBC1's Countryfile last Sunday.

steve
Posts: 259
Joined: Sat Sep 30, 2017 6:14 pm

Re: lyme disease research

Post by steve » Thu Aug 02, 2018 3:51 pm

mishmosh wrote:
Thu Aug 02, 2018 10:43 am
In case you missed it, there was an item on Lyme Disease on BBC1's Countryfile last Sunday.
https://www.bbc.co.uk/iplayer/episode/b ... ile-exmoor

13d
Posts: 40
Joined: Wed Oct 04, 2017 9:28 am

Re: lyme disease research

Post by 13d » Fri Aug 03, 2018 9:50 am

thanks guys..

Yeah, lots of exposure this week.. I'm in a Facebook group with some of the people interviewed.

Trying to make things happen regarding improved testing etc.. ticks are everywhere.. I was talking to my dentist the other day and she had one in the house from her dog.. Her kid pointed it out to her..

Anyone out walking dogs in grassy or wooded areas should check for ticks.. they're in people's gardens..

I'm open minded but I'm not one to go nuts over conspiracies.. I've seen a few people mention plum Island, there's a video on YouTube.. bit fuct up if true..

but yeah, this needs attention and action, yesterday.. think there's a lot more exposure to come

Fogg
Posts: 83
Joined: Sun Oct 01, 2017 3:28 pm

Re: lyme disease research

Post by Fogg » Sun Aug 12, 2018 8:15 am

This woman has a story so similar to yours. The NHS mis-diagnosis, presumably the same private lab in Germany.

https://www.gofundme.com/jillybeanshealingfund

I just chanced across that on Twitter. It seems we definitely need a better understanding of Lyme in this country.

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