Monday, 2 August 2010

Raising the awareness of Lyme Disease

Further to my previous post regarding the avoidance of Tick Bites and the potential contraction of Lyme Disease, Joanne posted a comment regarding the general lack of awareness of Lyme Disease. I had gathered a certain knowledge of this illness whilst I was reading about it but would request that you stop by Joanne's Blog to get a better understanding of the symtoms, the cure and just how difficult it can make life. It is only in this way that we can raise awareness, reduce the chance of contracting it and should we be unfortunate enough to contract it we would be aware of how to treat it.


The Odyssee said...

Some good info at Joanne's site. I hadn't seen it before so thanks for that.

Denise Longman said...

Thanks Maz for helping people to become aware of the potential dangers of tick-borne diseases.
if only people had been told about ticks by the powers that be at least 20 years ago, thousands of us would not be in the pain and disability we are in now.

I'd be grateful for your readers to have a look at our petition. We are emulating the Dutch who have collected more than 65,000 signatures.

The idea is for people to collect signatures on paper as well as the online collection, and in doing so they talk to their friends, colleagues, family etc, and spread the word about how easy it is to catch Lyme and how hard it can be to obtain proper treatment.

PS I did 3 Munros Maz! It's the thing I miss most of all now. I used to go to Scotland every summer, remember it being zero degrees C on 1st June when we camped near Cape Wrath.

All the best,

Joanne said...

Many thanks for raising awareness of Lyme Disease and linking to my blog.

Only this week I heard of a local man who has recently been diagnosed with Lyme disease. He like me was diagnosed with Polymyalgia Rheumatica some years ago and spent many years on steroids, which as we know suppress our immune system thus allowing infections to progress.
I heard that he had been diagnosed with Parkinson's last Christmas and sent information on to him to get checked out for Lyme Disease, something the NHS would not generally do. I knew he worked at an agricultural college locally and also know of 23 other cases of Chronic Lyme disease in patients locally.

Eventually after looking into the information I had sent I spoke with him and his wife by phone. It turns out that he had a known tick bite prior to the Neurological symptoms and had a rash on his shoulder for over a year that had mystified his doctors.

He eventualy went to the Breakspear Hospital and saw a Prof. who specialises in Lyme Disease he was diagnosed and had positive serology from a specialist US lab due to the shortcomings of our testing here in UK.

His GP is very supportive and will be happy to follow the specialists recommendations.That surgery is only too well aware of the devastating consequences of un treated lyme once it has progressed to affect the brain. Another of their patients only treated on the short course recommended by NHS developed Psychosis as well as many other typical Chronic Lyme symptoms. He went into his garden doused himself with petrol and set fire to himself. He died the next day. His wife had not been able to get his doctors to treat according to ILADS on long term antibiotics. Since she has passed on many useful research articles so that his doctors were better prepared in the future.

Although these are two very extreme cases there are infact many hundreds of patients that I am in touch with in the UK really struggling with Chronic Lyme Disease. Most of us were dismissed initially as having ME/CFS, Fibromyalgia, some get diagnosed with MS and at least one other with a Motor Neurons diagnosis.

Not everyone infected goes on to get chronic health problems there appears to be a genetic suscepability.

Not every tick is infected but we can't exactly ask it.

So awareness and protecting oneself are the keys.

Maz said...

I have linked the petition into the post I did recently. The good news is that it's had a significant number of views already so I hope it continues that way.

I'm yet to get up to Scotland for a bit of munro-bagging - we've got a Ben Lui trip planned next year but Mrs. M is pregnant so doubt I'll have much freedom to get away until March/April anyway.

Joanne said...

You might be interested to read this newspaper article about Allan Mitchell a keen canoeist and holder of a mountain climbing record is on a mission to warn other outdoors enthusiasts about Lyme disease.

The Weekend Dude said...

Maz, thanks for linking to the petition, the greater the awareness the better for sure, we need to spread it far and wide.

Scotland is truly an amazing place (along with a lot of otehr places in the UK), a great neck of the woods to get away from it all. Good luck with the wee one also, is this the first?

Joanne, all these articles just go to show how much suffering people endure as a result of Lyme Disease not being diagnosed swiftly. It is a travesty that this is still the case.

Maz said...

Indeed it is our first & thanks for the best wishes! Very excited & nervous too...

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