Has anyone in this area had Lyme disease? Petition being launched
Posted By: Denise Longman
Date: 4 Jun 2010 at 09:45
I didn't catch Lyme disease in this area, but I ended up having it for 20 years before I knew what had made me ill.
I got it after tick bites in Scotland when I was on holday there and the tests were negative so I was labelled as having ME.
I didn't even know that ticks carried disease, but they can carry all sorts of diseases and the symptoms can come on gradually or up to a month after the bites.
Once I started looking it up I realised that this whole area is quite a hot spot for Lyme (also called borreliosis) especially Thetford Forest but also in any of the heathlands and broads if there are any ticks there.
It's not just the deer that are important carriers so much as sheep, birds, especially pheasants, hedgehogs, and even your own dogs could bring the ticks in, and catch Lyme themselves. Even horses can get it.
Since I found out I had it, by having private tests, it's been such a struggle to find any doctor who knows how to treat it, and there is a big disagreement between what you can find out from the science compared with what the official line is on treatment. So I've ended up having to buy my own antibiotics which is a nightmare trying to decide how I can afford them.
After 5 years, I'm still ill, but a little bit better with some of the symptoms once I began taking the antibiotics. So I decided that I would organise a petition, especially after I found out that the Dutch have recently collected 65,000 signatures asking for something to be done by their government.
Our petition is all being done on a shoestring budget with a few people helping, and we know it might take a while to get going. It's only been up since the 15th April, and 1 of the days the web site that hosts the petition went down, but hopefully it's all ok now.
Please have a look at the petition (and please sign it if you agree with it!) you will see what we are asking for, but most of all, look at the comments from people who have signed already - some of them are heart-wrenching.
On Monday 26th April,I was on the Blythe Community, Radio Blythe 105, when Sylvie Jagger asked me questions about Lyme.
Some people have copied the petition details onto paper and have been collecting signatures. On the petition site it tells you the address to send it to. I will try and get out myself to do this but I rarely feel well enough to leave the house. But I'm definitely a lot better than I was before the antibiotics. 9 years of having terrible vertigo have now gone, and some of the areas of pain. Taking an antimalarial drug for 6 moths, which of course I had to pay for myself, was one of the best improvements.
Here's the petition link - I know it all sounds so complicated but please believe me, this is a hidden disease which is getting worse across Europe, and it's definitely needing more publicity.
I would one day like to build up a support group in the Beccles and Lowestoft area for people with Lyme, and also to let all those who have been diagnosed with ME, Fibromyalgia and some other diseases like ADHD, Bipolar disorder, Panic attacks, Arthritis, Autism, Parkinsons, Polymyalgia Rheumatica, Thyroid and loads of other conditions that they might possibly have had the disease without knowing it.
One of my friends, Joanne, had to retire from the Civil Service a few years early, with Polymyalgia Rheumatica. After about 2 years she decided to try antibiotics because she had other symptoms which pointed to Lyme. Well, after a few months she could tell there was improvement and after a year she was almost completely better.
She has a blog : http://lookingatlyme.blogspot.com/
Hope I haven't scared anyone! It's better to know though, and be aware of ticks.