Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Dear BBC

Today you published the article ‘Matt Dawson: I had to have heart surgery after a tick bite’. At first I was thrilled, it is always uplifting to see articles highlighting this condition being shared by the mainstream media. However as I eagerly absorbed each sentence , I could feel my heart sinking further in my chest. In fact I’m pretty sure it dropped straight out of me and into the flat below under the weight of my disappointment! You could have taken this opportunity to really highlight the world wide issue when it comes to diagnosing and treating Lyme and Chronic Lyme Disease. The fact that you didn’t leap at this opportunity is beyond me. What happened to the BBC being at the forefront of reporting, challenging the establishment, pushing boundaries?

You even went as far as mentioning that if Lyme goes untreated it can go on to attack and cause ‘debilitating neurological problems’. This was your perfect opening to delve into the devastating condition that is Chronic Lyme; you could have examined how the tests for Lyme disease are extremely inaccurate and false negatives are a frequent occurrence; you could have investigated how NICE guidelines have left the few doctors who are up to date enough with the research in the area to believe in Chronic Lyme, unable to treat their patients without risking their medical licence. You could have mentioned how, if you are in the unfortunate situation of having to fundraise money to pay for your treatment, you are looking at a minimum of £10,000 for private medical bills and that there is no guarantee that you will be cured. You could have investigated how many people that are given the early treatment are actually, years later, successfully cured.

I was bitten by a tick at the age of 6, at the age of 22 I was diagnosed with Chronic Neurological Lyme Disease. Almost 3 years on and I am still fighting. Last year I was informed by neurologists that they were 99% certain I had MS, but then my MRI came back clean, when I brought up Lyme my case was swept under the carpet. Sufferers are abandoned, left to battle their own way through the system, made to feel like a fraud whilst their lives and their health fall apart. Unlike your report suggests, it’s not as easy as walking into a hospital and stating you have Lyme and hoping for treatment. It feels like a life sentence.

I am living that life sentence.

 

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Comments on: "Chronic Lyme Disease – An Open Letter to the BBC" (8)

  1. samcharvey said:

    Love this Rebecca – Lyme needs to be acknowledged The BBC should be leading the way!

  2. You have my sympathies. I was surprised that they didn’t mention that the blood test is very inaccurate when he was urging everyone to get tested. I don’t have Lymes, but was diagnosed with ME at the age of 13 & so for more than half my life have been in a similar situation. NICE guidelines are useless for chronic illnesses & it’s sad to see that once again something that could be really highlighting the plight of many people is downgraded to ‘I can’t exercise as much as I want to’.

  3. Linda Samuel said:

    Yes I concur with everything single thing you’ve just said. Each time I build my hope up when there’s coverage of Lyme disease, the sting in the tail isn’t far away.
    I can’t tell what exactly is going on.
    If NICE guidelines were taking a wider longer financial view of this problem they would surely see it would be cheaper to change the testing and subsequent treating philosophy that keep thousands of people chronically dependant on an already over stretched NHS. That’s the financial side of this disaster.
    But what is criminal is the humanitarian fallout if this outdated philosophy.

  4. jillybean525 said:

    Such a beautifully written letter that expresses so succinctly how so many of us feel with Chronic Lyme. Thank you for writing!

  5. In my country is a must to keep a tick and bring it to the clinic lab where it gets tested for various infections as it is a better chance to have a correct answer and start treatment as early as possible. They also offer a jab in winter to prevent encephalitis as the ticks are spreading this disease in my region. Here in UK they don’t test ticks. My 3 months old was beaten in the park in November which was unusual for this time of the year and my son was beaten 3 times… but nothing was done by doctors to check them. I also suspect that my friend suffers from chronic Lyme for years now as doctors don’t know the cause of her joint and muscle pain, numbness of limbs and severe headaches and they refuse to test her for Lyme. I think it would be helpful if they could make a rule here to test all extracted ticks for infections

  6. You have put into words how all sufferers of Lyme feel. Hope they sit up and acknowledge you and get the answers we are all looking for. Well done for taking a stand. X

  7. Glad that someone wrote to you with this open letter there is so much more going on regarding late stage lymes disease , its diagnosis and its treatment, the guidelines for drs the research. Seriously think the BBC should consider a panorama investigation…..??

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