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Lowestoft Online > Community > Strictly Lowestoft > Debate Lowestoft Issues > Topic: Has anyone in our area had Lyme disease? petition being launched re treatment
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Author Topic: Has anyone in our area had Lyme disease? petition being launched re treatment  (Read 5096 times)
Denny23
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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 next week, 26th April, at midday, I will be going on the Blythe Community, Radio Blythe 105, when Sylvia Jagger will be asking me questions about Lyme.

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.

http://www.ipetitions.com/petition/uklymepetition/

I would one day like to build up a support group in the 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.

Best wishes,
Denise
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Jamesw82
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Its funny you've posted this because i was drying myself off after a bath on sunday night and i saw something on my arm, at first i thought a money spider had got into my towel and got squashed on my skin but I couldn't brush it off! Looked more closely and it was a tick! it looked dead so i got some sharp tweezers and pulled it out, the mouth parts thankfully stayed attached! I assume i picked it up on Saturday whilst on Gunton Warren/heath. I once had 3 bites whilst on holiday in Dorset a few years back but to my knowledge I haven't  had any ill effects, is there any simple test such as blood test, that can be done to see if you have it?

I dont think i have any of the symptoms that you described but its a bit uneasy that you can have a the diesease without knowing it HuhHuh Sad
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Denny23
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Posts: 33
Hi James,

Blood tests are where the problems are, because they are not reliable. The body does not make enough antibodies for the tests to measure until the bacteria have been in you for 6 weeks approx. and by then it's spread and begun to multiply.

I do know some people who have just gone straight to their doctor and asked for a couple of weeks of antibiotics even though they had no symptoms. But the GP might not be very well up on Lyme and think there's no risk, so some people have gone and bought private stocks of Doxycycline (or  Amoxycillin for children under 12) from the Internet.

Some ticks are not infected; the problem is though that more and more of them seem to be carrying Lyme and other bugs as well, even viruses.

One top American specialist has said he believes in the "one bite too many" theory - that we can fight off a few of the spirochaetes but after a while the immune system cannot cope.

Ray Mears has now got Lyme, but he had it for about 10 years before he found out and must have gradually got more ill. I wish I knew what treatment he had, and where he caught it.

Plenty of people believe they got bit years ago, and then a recent bite triggers it off. But it's also thought that a great life stress like a car crash or berevement or sometimes a vaccination, can tip things over the edge. The borrelia cannot make their own cortisone so they think here comes a feast when their host is churning out any of the hormones -adrenalin even oestrogen, progesterone, testerone etc, because they can break them down into the cortisol they need.

I do go on a lot about this illness, my appologies.
- I used to be a science research technician at Manchester medical school. Walking was my hobby, going up munroes in scotland, or just going along the Edale tracks in Derbyshire, up on the moors above Rochdale at Littleborough, Lyme park (!!) in South Manchester and walking all the way to Buxton from there once.

Dorset and the West Country are having a big problem with the numbers of people actually getting Lyme. Around Bath university a great researcher called Klaus Kurtenbach was looking at ticks and said they were getting more numerous and a higher percentage infected. he reckoned pheasants were keeping the infection and acting as a source for infecting more ticks. Then some people criticised him and said how is it all the gamekeepers aren't getting Lyme.?

But the response to that is what if they were getting it and it was showing up as backache, headaches, gut problems, eye problems, personality problems especially bipolar and depression, even anger and rages....the list is so long of what it can do. One of the frightening things is that it can cause a sudden stroke, but which doctors would think of looking for a bacterial infection if someone goes into hospital with a stroke?

But then after all those worries, the best thing to do is to think that the tick was probably not infected - BUT watch out for any change in your health - tiredness, aching or stiff neck and headache, eye pain.
Watch things for a month - it took mine a month then I had the worst bout of 'flu I'd ever experienced in July, I couldn't get out of bed for 2 weeks.

Everyone is different. At least I didn't get paralysed, but after the second fever about 5 weeks later, it was as if I had to learn to walk again. I was only 33 and didn't dream of going to the doctors about it, all I could think about was work and would I lose my job if I didn't get back as soon as possible.

But after the 3rd fever I didn't seem to recover: I felt so miserable and totally as if i was being worn out of all my strength and vtality, and a tooth fell out, I couldn't think properly and my neck and shoulder hurt all the time, and I got cervical cancerous cells as well. I think that was all part of the infection. I found it hard to talk and find words, and I kept going to have a sleep in the postgrads offices hiding from everyone.

So the GP ordered lots of blood tests for every possible thing (but in those days they never told you what the tests were for actually). I said to him do you think it could have been those sheep ticks that bit me in Scotland, and he said don't be so ridiculous, ticks don't carry germs. What an idiot he was, and also me for beliieving him. All tests were negative.

Then every few months I would have to have time off work, and also I began to be allergic to everything that I wasn't before, and felt one minute like I was going deaf, and the next as if the slightest sound was banging in my head. Also great sensitivity to light at times. No one knew what was wrong with me and I suppose they thought i was perhaps making it up, as the symptoms waxed and waned, and then changed completely to something else (which is classical for Lyme)

I worry a lot about people who go outdoors, perhaps dressed properly enough to keep ticks off them, like gamekeepers, but then they still do not realise a tick has cralwed through a gap in the clothing. They might bring in ticks into the house, or the larder where they might hang up a brace of birds which also would have ticks dug into them.
 A kid goes into the larder and a tick might just still be alive enough to head for the next host, a child or any animal, as it has finished sucking the blood of the bird and knows it's gone cold.

I'm falling asleep here, better go soon.
I'm very glad to have been able to answer some questions - hope you will perhaps look into taking any symptom seriouslynow and bear in mind the faster you get it treated, the less chance of it going chronic. I really hope it wasn't an infected one.

This nurse's description is good because it gives symptoms and explains the science quite well:

http://clinicianreviews.com/index.asp?show=lesson&page=courses/105213/lesson.htm&lsn_id=105213


Take care,
best wishes
Denise
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Denny23
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Do you think you would support the petition?

We are only asking for what seems logical and scientific, and the problem is too hidden in the UK so we need to wake doctors up, and the government.

http://www.ipetitions.com/petition/uklymepetition/

Den
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Denny23
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I went on Blythe Valley Community radio - and was made to feel very welcome and at ease there - but I couldn't help being a bit nervous and my mouth began to feel very dry about half way through. It was actually really interesting being in their bunker. Reminded me a little of the Frasier programmes on the TV.

http://www.blythvalleycommunityradio.co.uk/

I forgot to say so many things, but Sylvie kindly said she will be keeping leaflets about Lyme and contact numbers and web addresses for anyone who wants information.

The leaflets are made by a charity called Lyme Disease Action,

http://www.lymediseaseaction.org.uk/

They are all unpaid volunteers doing their best to help patients and also to warn people about how to remove ticks and how to avoid them in the first place.

all the best
Denise
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caz2
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 i thought diagnosis and treatment easy in uk i appauled it not... dr's in areas like this should be made aware.the deer population has increased and venturing into towns  so stands to reason ticks will increase.my vet told me about this problem  10years ago,he said people were getting it but going undeteced.i had no idea have pay for antibiotics...it certainly feasable people with m.e and other chronic disorders have got this awful disease.
my vet also told me about some tropical parrsetic worms also trans mutable  and on increase in this country but no tests are done for them.i signed petition gladly.good luck
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Denny23
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Posts: 33
Thanks for signing! It will take a while to get as many as the Dutch did, and on the same ratio we would have to get 240,000 signatures.
Shows how bad the whole thing is in the Netherlands, but who knows how much there is in Britain?

There are over 2000 people signed up to the EuroLyme yahoo group.

We have 300,000 people with ME and millions with neurological diseases like Alzheimers and Parkinsons and MS. Why are these diseases increasing, and also the number of kids with Autism?

A sixth form student in Canada did a project and then wrote a thesis looking at Multiple Sclerosis over the whole of North America, and it mapped exactly the same distribution as Lyme disease. She did lots of statistical calculations to rule out other reasons so it was not a simple task, and was very academically correct.

Many people with MS are finding they have an infection with either Borrelia or with Chlamydia pneumoniae, plus sometimes one of the Herpes viruses. And they are getting slowly better after treating with antibiotics. In the 1950s some scientists already had seen spirochaetes like Borrelia in MS patients, but somehow that work got lost or ignored.

Vets do seem to know more about Lyme and parasites.
Animals sometimes get better treatment for Lyme than humans do!

One doctor in the UK has found that a lot of us with Lyme have micro-filarial worms in our blood. Many of us have taken worming tablets, the ones called Ivermectin.

The whole population of Egypt was dosed with Ivermectin in the first half of this decade, for 4 consecutive years, I can't remember off hand but I think it was just once a year. You can't buy Ivermectin in the UK, not for human use, so we had to buy it abroad. It is very safe when taken at the correct dose.

The worms called nematodes are found in ticks and flies and mosquitos. In the tropics everyone knows they are a risk factor, but there is a wall of silence and ignorance in Britain. Every year, about 5 or 6 people actually catch malaria in Britain, not after going on holiday.

I used to think that medicine and science was working hand in hand but there seem to be big gaps. Public Health is underfunded perhaps?
There are still people dying from Creuzfeld-Jacob disease, or mad cow disease, and some of them were vegetarians. All very puzzling.

Best wishes,
Denise
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Denny23
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I just saw this link to a Canadian doctor talking on his local radio recently.
Click on the arrow under Lyme Disease: it's a long interview over about 30 minutes but it's really worth listening to - explains how he got his symptoms 2 years after the tick bite.

http://zoomerradio.ca/blog/the-news/lyme-disease/

Dr. Doug Wilson, a recently retired academic physician, discusses how Lyme Disease can be misdiagnosed as Alzheimer’s, MS, and Parkinson’s.

Best wishes,
Denise
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PaulGH
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I Love Lowestoft!
Hello, With regards lymes disease ,i was out with my children one evening on lowestoft north beach where the stream comes out onto the beach,i was walking around with shorts on, a few days later i noticed a red patch on my leg i thought no more about it,a few days later a red patch was spreading up my leg which did start to concern me,so i went to the doctors surgery and saw the duty doctor,he asked me if i had been on the beach, i told him yes i was given a full course of anti-
biotics. what he told me really concerned me,i never go to that area unless my skin is fully covered.
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caz2
Guest
i took my cats to vets some years ago and it was the vet who told me about the worms,he told me  travellers everywhere are brining these things back to country.the vet went into great detail with me,turned my stomach.there far more of these tropical diseases than you mention...friend of mine stayed at a hotel at heath row,he got maleria from mosquto brought over on the plane.
i have nursed people with typhpid and that was back in the 70s,we were told keep quiet about it on risk of loosing job...sure things have not changed and yes goverment very quiet,this very wrong..
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