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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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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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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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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
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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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Denny23
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Hi Caz and all,

On Bank Holiday Monday there was an hour long programme on radio Scotland with Kay Adams as the host (she used to be on TV in the Loose Women programme).

it's been put on youtube in 6 sections starting here:

http://www.youtube.com/watch?v=N1_KMS0ILOI&feature=related

There was an Infectious Disease doctor in the studio with her and a lot of pre-recorded interviews and there were people with Lyme who phoned in. The ID doctor didn't even know about the co-infection Bartonella being transmitted by ticks.

He was saying that after the recommended treatment of a few weeks of antibiotics, they offer Cognitive Behavioural Therapy (CBT)and graduated exercise therapy (GET)and these have been proved to be beneficial in people with ME  - (That is totally untrue - the evidence shows only a temporary lift from CBT and the GET actually makes people worse! All the evidence has been gathered now under the FINE and PACE trials and it cost millions to do but has proved to be a waste of time and money in ME/CFS patients)

They were swamped with callers trying to get through. Some of the cases were so sad to hear. One woman was nearly better after spending £12,000 to £13,000 at a private clinic, and they did quite a long interview with her. She said she would be in a wheelchair now if not for the 2 years of antibiotics, the 1st 6 weeks were intravenous, then after that oral ones.

They missed out a pre recorded interview with one of the very few doctors in the UK who treats Lyme properly, who ends up with people going to see him privately with their long-term chronic Lyme, and he gets them better, sometimes not 100% because of the damage and the way the bugs have taken residence in the body, but a lot better than they were.

Another doctor who was interviewed admitted that Lyme does cause ME, but he said only a small proportion of the numbers of ME. How does he know that? He is the Lyme laboratory doctor in the NHS up at Inverness.  A few years ago, this same doctor, Dr Darell Ho-Yen, published a scientific paper saying he had retested some negative blood tests of suspected Lyme, and they were positive after all.

How many people with ME and Fibromyalgia and other diseases really have Lyme?
Some people will be having palpitations and they are told it's all in your mind, and when they start to get more and more symptoms, odd pains and dizziness and memory problems and what we call "brain fog" they end up getting sent to the psychiatrists.
Doctors have a kind of code which says if you have more than 5 different symptoms, you are basically making them all up because you have made yourself ill.
A handy get-out clause for busy doctors.

The tests for Lyme are really inadequate, and they never test for the co-infections that are carried by ticks.

People have been e mailing Kay Adams asking her to do another programme. I hope she does, but the BBC will be very wary of being too controversial I'm guessing.

About the worms - I know of 4 instances of GPs or consutants saying to people who have had worms seen in their blood (either by their own microscope or a doctor who has started to learn about this subject) that we all have worms in our blood. What utter stupidity!

A scientist called Klapow has found a worm in ME patients, about 12 or 15 years ago, I forget, and he has patented it because it is so unusual. It's a strongyloid worm species, I think he's been allowed to name it Cryptostrongylus Klapowi. It's hard to get rid of, as the worming medicines only kill the baby worms, so some people are deciding to take repeated doses over years.

It seems that some of us unlucky people have been infected with several things at once, but no one is looking and we are too troublesome for doctors. Unless the orders come from the top, no ordinary doctor likes to stick his/her neck out.

People are getting less help than you would give to a dog. But why? I cannot understand why it's all so secret, unless the escaped laboratory germs theories are true! For further info on that try googling Plum Island + Lyme. Perhaps it's the cost of treatment, but they treat AIDS with expensive drugs for years.
Thing is, I don't care how it all started or whatever, or whether it's global warming or too many people living near to the countryside (yes, that's one of the proposed reasons for the massive increase in tick-borne diseases), I just want the disease to be taken seriously, people to be warned that it's everywhere and can be carried all over on birds and mice and squirrels, and people need long term care and treatment if they didn't get it treated in the early period of the infection.

That's why I began the petition, because until there is more of a fuss from the general public, the government will carry on doing nothing.

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

I'm attaching a word document which has the petition on it for anyone to download, if they think they could help by gathering signatures from their friends and family or anyone else.
It would be so wonderful and kind if someone would help me in this, as I can rarely get out of the house and when I do I haven't got the energy to talk to people.

It's nicer to have signatures on paper and lots of people are shy of the Internet or don't have it. There is an address for the petition to be sent to at the end of the text - so if you could gather 10 or 20 signatures and send them in, that would be so amazing, and give us a boost to help us keep on going. If they can do it in the Netherlands then so can we, even if it takes 2 years. Just think, in the process of getting people to sign it, they will be warned about ticks for ever.

best wishes,
Denise
* UK Lyme Petition ready for web site.doc (36 KB - downloaded 87 times.)
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Denny23
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This is a new development which I've only just found out about.

A Dutch-based company are making available a method of testing whether the tick that bit you has any Lyme bugs in it. I'm not sure whether they test for any of the other bacteria that ticks can infect people with, such as Ehrlichia (anaplasma), Bartonella and Babesia.

The web site is www.stopthetick.co.uk

On one of the pages

http://stopthetick.co.uk/stop-the-tick/

it says:

Discover a tick on your body? Remove it with the Tick Remover and save the tick. Write down the date you’ve found the tick and keep the tick for research. Medio June the Care Plus® Tick Test will be available in the UK for £ 9,99. The Tick Test is a self test so you can easily and rapidly test the tick on the Borrelia bacteria. The test is reliable when proceeded according to the instructions. Bring the test to your doctor and ask for a treatment as soon as possible!

It doesn't sound too expensive considering what can happen if the tick has passed on the bugs.
The Dutch are a lot more aware of Lyme disease than we are. I'll try and find out what people think of the test in Holland and whether it is sensitive enough.

best wishes,
Denise
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freelance
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Denny23.   Try to see a copy of the EADT supplement EA Life, dated yesterday (Saturday July 10th).
Two whole pages about ticks and Lyme Disease.
If you have not already seen it - it would be worth trying the Journal office to get a back copy.
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Denny23
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Thanks for that info freelance.

The EADT did a very good article in 2005 - I remember cos I was in it! The journalist then went to a lot of trouble to look things up and interview other people too. The health section then didn't get cached on the internet, which is a pity - probably it's still the same now. Will try and ring their office tomorrow.



Re  the tick testing kit: I couldn't get any more info on the one called stop the tick, but in the process of searching the Netherlands web, I found another laboratory, and asking people on EuroLyme it got a very favourable recommendation. Even people from Norway are using it to diagnose Lyme and co-infections, and also to see what the ticks are carrying.

http://www.prohealth.nl/sites/257/Borreliose_ENG_2010v02.pdf

and the English translation of the whole site is here:

http://translate.google.co.uk/translate?hl=en&sl=nl&u=http://www.prohealth.nl/&e\
i=MI4wTJ3eM4zy0gSCxZSrAw&sa=X&oi=translate&ct=result&resnum=1&ved=0CBwQ7gEwAA&pr\
ev=/search%3Fq%3Dprohealth%2Bbv%26hl%3Den%26rls%3Dcom.microsoft:en-gb:IE-SearchB\
ox%26rlz%3D1I7PCTA_en

Perhaps better as a tiny url:

http://tinyurl.com/38za4tq

I hope the UK Lyme Petition site is still working ok, a couple of people said they went to sign on Friday and it didn't work. I've been not up to anything requiring any concentration for a while so haven't checked with them yet.

Best wishes,
Denise
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Alice
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My mother had Lyme disease (caught it in the States when she was visiting my brother) and when she came back here she didn't have any problems getting the NHS to treat it. It's a pretty straightforward treatment, once it's properly diagnosed.  It's treated with antibiotics.

In Texas, it's not uncommon and people know there that it's always a good idea to watch a tick bite and make sure it doesn't show Lyme symptoms (a red ring or rash around the bite). If you start treatment early in the disease, it won't end up being a big problem.

alice
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Denny23
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Hi Alice,

Glad your mum was treated straight away! That's what I hope will happen when everyone in Britain knows about Lyme and tick-borne diseases (TBDs)- they will be quick to realise that there is a need to get treatment as soon as even slightly vague symptoms happen, even without the bulls eye rash.

The petition is one way of people talking to others and spreading the word. Even if the government ignore it as they have done previous ones, at least people will talk about it and protect themselves.

The whole problem with TBDs is that once the infection has gone past the first stage, the doctors are thinking that it's too complicated and expensive to find out what's going on in each individual patient, and if it didn't kill you then there's no problem. Acute Lyme disease does get treated but so many of us have gone without a diagnosis in the beginning that we need extended treatment because the germs have spread and they seem to evade the normal immune system or switch the immune system off.

The latest overview of the complex of infections is descibed very well in this recent talk by Dr Joseph Burrescano.

http://www.mdjunction.com/forums/lyme-disease-support-forums/studies-research/1675796-dr-joe-burrascanos-july-2010-nutsbolts-talk

It brings in the latest research and Dr B is in contact with many doctors acoss the world. A tick bite can carry so many different germs and it's very difficult for even the best labs to find out exactly which ones.

Many people with ME (which has been given the inappropriate name of Chronic Fatigue Syndrome and thus trivialised in many ways) are suffering not just "fatigue" but some are virtually paralysed and in pain and have problems with co ordination and they nearly always have "brain fog". The symptoms are so similar to Gulf War Syndrome, and it's believed from the results of a prestigious scientist, Dr Garth Nicolson, that Mycoplasma is the infecting organism in both diseases.

In 2009, a team in Nevada found a retrovirus in ME/CFS patients, and this has been confirmed by the American National Institutes of Health, who found it has contaminated the blood supply as well. It's called XMRV and has somehow crossed from the mouse genome into humans.
It's a retrovirus, which means it's incorporating itself into the human DNA.

There is a lot going on that you don't see reported on the TV news!
The Independent covered the XMRV story last week:
http://tinyurl.com/276r42c

Perhaps the XMRV is in tick bites - after all, mice are often part of the life cycle of ticks.
This is at the forefront of medicine and it's going to be very interesting to see what happens.

I know of a few people with well-documented Lyme disease who have had the private test for XMRV and they are positive. One of them is a doctor called Jamie Deckoff Jones; she  has begun taking anti retroviral drugs and is improving, but no one knows whether this will be a cure or whether it will be necessary to keep on taking the AIDS-type drugs for life just like HIV patients have to.

Best wishes,
Denise
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Denny23
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Re: Has anyone in our area had Lyme disease? petition being launched re treatment « Reply #16 Posted: 15 September 2010 at 03:39 PM »
I cannot believe this , but I got bitten again, on 14th August, at a BBQ in a friends garden not far away from my home.

I hardly ever leave the house, that must have been my second social event in a year!

 I don't know whether anyone else got bitten: although I told the hosts, they didn't phone everyone up and ask them to check themselves. But the next day when I'd seen the tick and it fell off me (after having a good feed for 15 hours)I phoned them up and they said they did see a tick crawling over the tent tarpaulin when they were packing things away.

There was no rash for 13 days, then a small one appeared and is still there and this must be day 32 now.

Will write more details in another e mail.

the experience with a GP I asked to see the next day as an emergency appointment was absolutely awful, and showed that he was so ignorant of anything to do with ticks.

The tick is still just about alive in a jam jar, it's a young male and most probably the sheep tick, but I cannot be sure. Not that it matters, all ticks are potentially carrying something.

I took antibiotics for 3 weeks, some were left over ones from my son's acne treatment, the rest were a gift from a friend, then I stopped for a week, and now I have a stiff neck and headache and feel nauseous. A bit worrying. Back onto antibiotics perhaps?

I must attract ticks, perhaps some people do more than others.

best wishes,
Denise
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Joe
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Re: Has anyone in our area had Lyme disease? petition being launched re treatment « Reply #17 Posted: 15 September 2010 at 05:30 PM »
Well I can relate to this.  I was at Bonds Meadow last Sunday & got bitten about 5 or 6 times on my arms.  Not sure what bit me, ticks, horseflies. mosquitos, etc, but it sure did hurt like hell.  Not so bad at first, but later that night it was agony.  Next day woke up to severe swelling on both arms so straight after work saw a pharmacist, who prescribed Clarityn allergey tablets (with antihistamine) & a cream called Hc45.

Next day was even worse, both arms felt like over inflated balloons, couldn't wear my watch because couldn't fit it on my wrist!  Don't know if the Clarityn pills were doing any good, but the Hc45 cram was great providing temporary relief.  But both arms still ache like hell, especially when going to bed & when getting up.

Now 3 days later the swelling is just starting to go down.  I've never had a reaction to insect bites before but this time they definately hit me with a vengence!
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Re: Has anyone in our area had Lyme disease? petition being launched re treatment « Reply #18 Posted: 15 September 2010 at 07:08 PM »
It is rare to get bitten by a tick. Mosquitoe s or Horseflies. My advice is to take an antihistamine tablet as well as using the cream. Its double defence then.
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Re: Has anyone in our area had Lyme disease? petition being launched re treatment « Reply #19 Posted: 15 September 2010 at 08:36 PM »
My Mum is prone to being nibbled by insects - if there is one within a 10-mile radius, it will find her - and swears by Piriton daily during the spring/summer.  It won't prevent bites but it can lessen the effects or help prevent infection from a bite.  Use with a good anti-mozzie cream or spray.

Tick bites sound very unpleasant Sad.
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Denny23
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Re: Has anyone in our area had Lyme disease? petition being launched re treatment « Reply #20 Posted: 19 September 2010 at 08:55 PM »
Hi Joe, I hope your arms have gone down to normal now.
Anti histamines definitely help with any stings and inflammation from insect bites, but tick bites are painless.

Mosrt people do not know that a tick or several ticks are latched onto them sucking their blood - this is what happened to me 25 years ago, and again 5 weeks ago. I never felt a thing. And the rash that did appear after 2 weeks was completely pain free and itch free.

Please be careful of tick bites - it can happen to anyone, in a garden, a park or in wilder places.

The tick that bit me is still alive and I will try and find out exactly what species it is.

The GP who saw me the next day was not just rude and unsympathetic, but he showed such ignorance that I was very surprised and actually really upset and walked out of the surgery in tears.

Someone I know in the Bury area has had a much better response from their GP-  my friend was given a few weeks of doxycycline to take - just because she had discovered what must have been hedgehog ticks on her ankle for a day.

So now she can rest assured she has beaten the bugs before they got a chance to grow and multiply. Perhaps there were no germs in the ticks on her ankle - but it only takes a few and you could be like me with no life, everything ruined, each day a struggle to get dressed and try and beat the pain and weakness. Ticks are really dirty creatures - whatever they were feeding on before (it could have been a rat even) they will have picked up the viruses and bacteria in that animal or bird.

Doxycycline is really cheap and it's been given for several years at a time to people with acne.

So why was the GP who saw me so rude and ignorant? What's bugging him I wonder?
he said things like "we don't get ticks here" "Only deer ticks carry Lyme disease". "You never get ticks in a garden"
and the strangest thing of all, for an educated rural doctor to say " that's not a tick, it's just a creepy crawly" Plus "you can only get bitten if you were sitting on the grass",  and "it never bit you."

I don't like being called a liar. I think he has a problem so I will hopefully never see him at the surgery again. My own GP is a really nice one, and I only saw that one because it was a very short notice appointment.

I was about to show him where it had bitten me, where there was the slightest raised lump, but he didn't want to know.

What's worse is the ignorance shown, because people like him are paid over £100,000 a year to keep us healthy and he should know by now that Lyme disease is easy to catch and hard to cure, that the ticks are not even called deer ticks (that's only what they call them in some parts of America) and most of them are the Sheep Tick, ixodes ricinus, or the many different types that live on mice, birds squirrels etc.

There are ticks everywhere in this area, because we are as rural as anything, and close to the sea, with seabirds and estuary birds likely to carry ticks on them from wherever they were before.

Anyway, I hope that other doctors are more knowledgable about this and realise that a few £££ worth of antibiotics could save someone from being totally wiped out later in their life, and in the long run costing society much more.

I wonder whether there is some anti -woman mentality going on here as well. it does seem that mosquitoes and gnats bite women much more than men., and it is true that there are twice as many women with ME compared to men.
But for years, doctors have said ME is all just emotional and down to stress, or yuppie flu.

When all along ME people have been suffering so much, how easy it's been to put them down as depressed or worse still, as work shy, hysterical, hypochondriacs etc.

What if ME is Lyme disease? I can't see why not. The truth will come out in the end and I hope there will be some help for all the children and adults suffering so much.
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Denny23
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Re: Has anyone in our area had Lyme disease? petition being launched re treatment « Reply #21 Posted: 16 November 2010 at 12:09 AM »
BTW, the tick that bit me in August is still alive.
It's in a jam jar with some damp cotton wool and a few leaves of basil. Sometimes it stays in the bottom of the jar, other times it's climbed higher up the jar and sits there for a day or two.

The lid is tightly screwed on (! ) but every now and then I undo it to allow air to get in. This does sounnd a bit repulsive I know, keeping it alive for so long, but one day I'll get round to sending it for identification somewhere.
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Peter Kemp
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Re: Has anyone in our area had Lyme disease? petition being launched re treatment « Reply #22 Posted: 13 February 2011 at 09:36 PM »
Hi,  I signed the petition because I had a negative test for Borreliosis (Lyme disease) on the NHS.  But, I cultured spirochetes from my blood (bar is 10 microns):
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Denny23
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There are many contacts now on Facebook - I'm there as myself if anyone wishes to be a "friend" on there, it might help to see all the other people who are joining together, there are many links to patients with ME and Fibromyalgia too.

Fibromyalgia is probably the most common misdiagnosis for a chronic infection with a tick-borne disease, either that or ME.

At the end of April, several national newspapers had Ray Mears telling his story about how he has recovered well from Lyme. I'll try and find the links for those.
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Smiley71
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"Fire Up The Quattro!"
I just signed.... Grin
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The Gospel According To Gene Hunt!
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Denny23
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Thank you for signing Smiley!

Last Monday the Daily Telegraph did a very good article on Lyme disease, with the chair of Lyme Disease Action and another woman talking about how serious their illness had been, how hard it was to be diagnosed, and their fear that treatment keeps being stopped because no one has a decent test to show if the infection is still active.

Here's the link to the Telegraph article, and about 60 plus comments have been added from the public

 http://www.telegraph.co.uk/health/8511954/Deadly-Lyme-disease-on-increase-as-more-of-us-spend-time-outdoors.html

The fact that we all feel much better, with less fatigue and malaise, less joint pain and head pain, less rapid heartbeats and gut problems etc, while taking antibiotics, has had no impression on the health controllers. The Health Protection Agency (HPA) act as if their testing and diagnostic methods are totally OK, and even said this in Parliament, even though in the next sentence they then said that they "are continually looking at how to improve their tests."

What a lot of two-faced statements there are these days, typical of the kind of political spin and double-speak that George Orwell predicted and wrote about in his post WW2 book "1984". They must think that people are stupid, but the real reason people have been conned is because they are so busy surviving and dealing with life's problems, and just haven't been able to read all the fine print. We have all trusted people like those in charge of public health, and who would imagine that this trust has been so completely misplaced?

I think it's time for us - patients, doctors, and scientists - and the general public who are gradually learnig about this hidden pandemic - to speak out and to ask why we've had to put up with such idiots. Those who have been paid to be responsible for the health of this country have been idiotic and ignorant to the point of being criminals, in my view.

Instead of their double-talk, and the cop-out which has kept the detection rate absurdly low, the HPA should be actively helping to develop the correct tests which have shown most promise, such as the LUAT urine-based test, and the Fluorescent Antigen one - as well as the traditional dark- field microscopy which is used in all spirochete detection ( eg for syphilis).
Some researchers in other countries are developing the microscopy, and they showed they could visualise the spirochetes swimming around in a mouse's ear blood vessels, in real time. But who has taken that method up? Our Department of Health certainly hasn't. It ought to be available in every hospital - it wouldn't cost that much once it was set up. But any new method needs government funding once the academics have created it.


Instead, they keep relying on antibody tests - which is really awful for those of us whose antibodies have been shut down, probably by the bacteria acting on our immune system , a bit like HIV does in AIDS.


Best wishes,
Denny
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margaretpeek
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Just signed petition.Wish you well with this
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LDA
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Journalists sometimes get in touch with Lyme Disease Action looking for people with Lyme disease to act as case studies.

If you would like to consider being be a case study, please email press@lymediseaseaction.org.uk

Many thanks
Helena
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Denny23
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Thanks Margaret  : )

Every signature is a step towards getting the government to listen and to tackle the problem, instead of pretending there is no problem!
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Denny23
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Hi Helena,

I've sent a message to you through the forum's private messages.

I did contact the East Anglian Daily Times again, in january, and a journalist who had done a big 3 page story about me and Lyme in 2005 said she would do a small mention of the petition.

She didn't tell me which day it would be, so sometime in April I think there was a mention. No one I know saw it and I don't buy a daily newspaper!

Next time I do anything, I would like it to be in a national. We've been very lucky this May to have so many things in the press, and even on BBC in the London regional news on Thursday at about 6.15 pm.

But things are still so desperate, I wish some scientists would speak out.
I want to say something scientific, but in layman's terms.

All the best, look forward to hearing from you : )
Denise
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Denny23
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Last weekend in Washington DC, patients in the US held a march and rally. Here it is on you tube.

http://www.youtube.com/user/DEVO12GA#p/

Just about to watch it myself now, and wish that this weird political strange situation did not exist. The science is openly available - the bacteria persist like chronic syphilis and each patient may have several different bugs as well as the Lyme, including viruses and rickettsias.

BW,
Denise
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Denny23
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Just an update - there will soon be a link to the petition on the new website being launched by Lyme Disease Action

So far we have about 300 signatures on paper and over 550 online.

Unfortunately, patients are still having to find the treatment they need in the USA and Germany mostly.

Considering that this is a disease which could be causing sickness in half a million people in the Netherlands (and probably far more than that in Britain) it still amazes me that there are no specialist clinics being set up, nor special courses organised for doctors and medical students.
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Denny23
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Re: Has anyone in our area had Lyme disease? petition being launched re treatment « Reply #32 Posted: 10 December 2011 at 12:08 AM »
I'm really pleased to let you know that the charity Lyme Disease Action has put a short announcement on their web site with a link to the petition:

http://www.lymediseaseaction.org.uk/resources/latest-news/

It was a bit hard to find once it wasn't any longer in the latest few news items. Perhaps I'll ask if it can be more noticable again
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Denny23
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Re: Has anyone in our area had Lyme disease? petition being launched re treatment « Reply #33 Posted: 09 February 2012 at 09:46 PM »
Just catching up - here's a BBC news item that's important. Will be putting the 2 new scientific studies in following posts soon.

http://www.bbc.co.uk/insideout/west/series11/week6_lyme_disease.shtml
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Denny23
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Re: Has anyone in our area had Lyme disease? petition being launched re treatment « Reply #34 Posted: 13 February 2012 at 12:04 AM »
Persistence of the disease after treatment was recently proved in monkeys at the world's most famous primate research institute at  Tulane university.

This is exactly what's going on in humans, and it also shows up the way antibody tests didn't work

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0029914

Here is an explanation at www.lymedisease.org

http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-new-study-shows-lyme-persists-in-monkeys.html
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