Has anyone here had Lyme disease? Petition being launched as NHS denies treatment for chronic Lyme
Date: 4 Jun 2010 at 10:24
Hi,
I've posted a similar message on the Lowestoft and Beccles forums because thre will be people like me who don't know that Lyme disease is a killer, and a cause of chronic illness which doctors are not aware of.
here's the online petition.
http://www.ipetitions.com/petition/uklymepetition/
You don't have to pay to sign, although the web site server company asks for donations after you have signed, you can ignore that.
And here's the thread on the Lowestoft community forum:
http://www.lowestoftonline.com/community/index.php/topic,16557.0.html
if you look at some of the comments on the petition pages you can see that people are going through a terrible time and most people are having to get private treatment.
The official line is that it's rare. But so many people with ME, fibromyalgia, arthritis, multiple sclerosis-like symptoms, bipolar disorder, schizophrenia-like symptoms, you name it - even autism and ADHD,- they are gradually cottoning on to the fact that the bacterial infections from ticks can cause all of these illnesses.
I had ME supposedly for 20 years and then had 2 private tests which showed the Lyme bacteria in my blood. The NHS tests had been negative.
I didn't get bitten here, it was in Scotland when I was on a hill walking holiday.
It was on midsummer's day 1985 when I got a dozen ticks on my shins after walking through heather and bracken near to the coast on the Applecross peninsula. I thought they were fleas and actually I didn't notice them anyway because the bites are painless and it wasn't until the next morning when I saw them. I was not aware that they had to be pulled out with tweezers; instead I scratched at them and probably left some of the mouthparts embedded.
Nothing really happened until a month later, although I did begin to feel strangely tired the very next day, and as if a lot of thoughts were always going through my head. I wasn't one for going to the doctors, and when I did get the flu-like episode in the July, and even though it was like the very worst almost paralysing bout of flu I'd ever imagined, I didn't go to the doctors then either.
Anyway, it's a long story of being repeatedly ill and getting more and more symptoms, but now I've been on and off antibiotics for 5 years I'm in much less pain and my thoughts are a little bit less "brain-fogged". My life has been ruined though, as I lost my marriage first of all, then my career as a scientist, then my house and gradually all of my social life. The worst thing was being labelled as having ME, because that was somehow pushing the blame onto me as being a yuppie flu person who couldn't stand the stress.
Actually, I am from a very working class background; I never managed to be a yuppie! I wish I was, then perhaps I could afford the private treatment.
1000 people every year fly from Sweden to Germany, to get treatment for Lyme disease. Germany is the best place for knowledge and treatment, apart from some really good doctors in the US and Hungary, but it is still private and sometimes very expensive.
I want to help other people not have to go through what's happened to me. Children are especially at risk, and the rash is only there in less than 50% of people, or it could be hidden by the hair, so it can be hard to tell whether a tick has even bitten you. If you do get a circular rash, sometimes one that looks like a target/bull's eye, then you've got Lyme disease, and you should see a doctor asap. Sometimes there are other bacteria there in the tick, ones like babesia which is a bit like malaria, so not all cases of Lyme are just Borreliosis.
But how to tell if you've caught it if you don't even remember being bitten by a tick? Some people swear it was a horsefly, but no one knows whether those insects can pass it on. The bacteria (which are twisted long things called spirochaetes, and related to syphilis) - have been found in mosquitos and horseflies, but only ticks have been proved to pass the bugs on. No studies have actually been published on whether the flies and mosquitos can pass it on! so it's not actually been disproved or proved.
A very long message here, please excuse my going on about it so much, but also - please support our petition and we might get something done.
The Dutch handed in 65,000 signatures in March this year and their parliament is now obliged to hold a full debate. Let's see if our new government with it's spring-cleaning attitude will do something, and stop telling us that the disease is rare and easily treated and the tests are the best in the world. That's all spin, i.e not the truth, I can assure you!
best wishes,
Denise