Sample Letters, for those who have not yet contacted their MP

It is really better if you compose your own letter and only have a very quick glance at these sample letters. These letters are not intended to be copied. Please adapt them to your own story.

For those who have not yet contacted their MP

You remember tick bites and/or a typical rash
You don’t remember tick bites or a typical rash
You have managed to achieve part of the fight back to health

Or for those who have already contacted their MP

You remember tick bites and/or a typical rash
You don’t remember tick bites or a typical rash
You have managed to achieve part of the fight back to health

For those have not yet written to their MP or asked him/her to sign Early Day Motion 958 but who remember tick bites and/or a typical rash.

Your own postal address, the date.

Dear (Your MP)

I have recently been (clinically diagnosed with Lyme disease OR become aware of Lyme disease) since being bitten by a tick. It appears there are many serious issues that arise regarding this diagnosis.

I feel very dissatisfied with the information given by the Minister of State, Caroline Flint MP, in her responses (dated 29^th March 2007), to the issues raised regarding diagnosis and treatment of Lyme disease. Points from this response have been issued to MPs and a full response has been issued to the national charity Lyme Disease Action. I have taken an interest in this because it relates to my own ill health.

When I started to have many of the symptoms that might indicate Lyme disease, my GP had no idea what could be wrong with me. Remembering that I had been bitten a few weeks previously, I took it on myself to read about Lyme disease. It is obvious to me that even if my doctor had access to the tests referred to by Ms Flint, he/she was not sufficiently aware of Lyme to order these tests for me. I had to suggest to my doctor that it might be Lyme disease myself.

(Optional extra: I also had a spreading rash, but my GP told me that this was eczema/allergy/give your own experience of whatever you were told).

I have since discovered that in any case there are question marks over the reliability of the current tests. It appears there are many people who fit the bill with their symptoms and their medical history but find that they are Lyme negative when their blood is tested. Even the official medical journals that relate to the internationally accepted tests indicate that Lyme testing, and testing for other closely related pathogens, is a very complex field about which new discoveries are being made quite frequently. Under these circumstances, how can anyone assure me that the tests are totally reliable?

I have also discovered that the world authority on infectious diseases, the CDC (Centers for Disease Control and Prevention) in the USA state that “Lyme disease is diagnosed based on symptoms, physical findings (e.g. rash), and the possibility of exposure to infected ticks; laboratory testing is helpful in the later stages of disease.” This means that a doctor can make a purely clinical diagnosis.

In these circumstances, as I explained to my doctor, I feel that I should be given the benefit of the doubt. After all, if I do have Lyme, I feel I should be allowed, at the very least, to take a trial period of the simple antibiotic treatment that might give me recovery. Others may want to risk it and not take treatment, that’s up to them. On balance, I’d rather risk taking antibiotic treatment that might be unnecessary rather than endure the ongoing symptoms of a life with Lyme disease.

My experience as a patient just does not match up to the account that Ms Flint has given you.

I note that Julia Goldsworthy MP has placed an Early Day Motion on Lyme disease (EDM no. 958) before the House of Commons in this session of Parliament. I would like to request that you sign this EDM since I feel the issues raised about Lyme disease are very serious ones that have affected me directly.

Yours sincerely

(See ‘Writing to your MP’ section)

(Around 590 words)

After you have written your letter you may like to print off our 'LDA Abridged Response’ and enclose it.

If your MP becomes very interested it may be worthwhile to give them the full response of the charity Lyme Disease Action.

Or

For those who have not yet written to their MP or asked him/her to sign Early Day Motion 958 and who don’t remember tick bites or a typical rash.

Your postal address, the date.

Dear (Your MP)

I have recently become aware of the lobbying that is taking place in the House of Commons in support of people who have Lyme disease. I note that the Minister of State for Public Health, Caroline Flint MP, has made a response (dated 29^th March 2007), on the issues raised by Lyme disease. Points from this response have been issued to MPs and a full response has been issued to the national charity Lyme Disease Action. I have taken an interest in this because it relates to my own ill health.

When I started to have a plethora of strange symptoms my GP had no idea what could be wrong with me. However, I remembered reading about a disease that doctors were finding difficult to diagnose because it can vary greatly from one patient to another. I took it on myself to read about this and discovered it was a disease carried by ticks called Lyme disease or Lyme borreliosis. It is obvious to me that my doctor was not especially aware of this possibility, so these tests were never ordered for me. I had to suggest to my doctor that it might be Lyme disease myself. I did not have a rash, and I do not live in a high risk area for tick bites, but in my reading I discovered that many patients don’t exhibit the rash and that the disease has been recorded all over the UK, not just in ‘hot spot’ areas.

(OR) However, I do live in an area where there is a known higher risk for Lyme disease because we are near the Exmoor/New Forest/South Downs/Wiltshire/Berkshire/Thetford Forest/Lake District/Yorkshire Moors/Scottish Highlands/any known local hotspot).

I have since discovered that in any case there are question marks over the reliability of the current tests. It appears there are many people who fit the bill with their symptoms but find that they are Lyme negative when their blood is tested. Even the official medical journals that relate to the internationally accepted tests indicate that Lyme testing, and testing for other closely related pathogens, is a very complex field about which new discoveries are being made quite frequently. Under these circumstances, how can anyone assure me that any tests I take would be totally reliable?

In these circumstances, as I explained to my doctor, I feel that I should be given the benefit of the doubt. After all, if I do have Lyme, I feel I should, at the very least, be allowed to take a trial period of the simple antibiotic treatment that might give me recovery. I know I might not have Lyme, however, I understand this possibility. On balance, I’d rather risk taking antibiotic treatment that might be unnecessary rather than continue to feel ill and maybe in the future find out I could have been treated all along.

Ms Flint’s answers so far do not answer my questions about this worrying situation.

Yours sincerely

(See ‘Writing to your MP’ section)

(Around 650 words)

After you have written your letter you may like to print off our 'LDA Abridged Response’ and enclose it.

If your MP becomes very interested it may be worthwhile to give them the full response of the charity Lyme Disease Action.

For those who have not yet written to their MP or asked him/her to sign Early Day Motion 958 but who have managed to achieve part of their fight back to health.

Your postal address, the date.

Dear (Your MP)

I have recently become aware of the lobbying that is taking place in the House of Commons in support of people who have Lyme disease. I note that the Minister of State for Public Health, Caroline Flint MP, has made a response (dated 29^th March 2007) on the issues raised by Lyme disease. Points from this response have been issued to MPs and a full response has been issued to the national charity Lyme Disease Action. I have taken an interest in this because it relates to myself and my own former ill health, now much improving/ed.

I feel very dissatisfied with the information given by Ms Flint in her public responses.

When I started to have many of the symptoms that might indicate Lyme disease, my GP had no idea what could be wrong with me. Remembering that I had been bitten a few weeks prior to feeling unwell, I took it on myself to read about Lyme disease. It was obvious to me that even if my doctor had full access to the tests referred to by Ms Flint, he/she was not sufficiently aware of Lyme to order these tests for me. I had to suggest to my doctor that it might be Lyme disease myself.

In my reading I discovered that in any case there are question marks over the reliability of the current tests. It appears there are many people who fit the bill with their symptoms and their medical history but find that they are Lyme negative when their blood is tested. Even the official medical journals that relate to the internationally accepted tests indicate that Lyme testing, and testing for other closely related pathogens, is a very complex field about which new discoveries are being made quite frequently. Under these circumstances, how could anyone have assured me that any tests were totally reliable?

It seems that even the world authority on infectious diseases, the CDC (Centers for Disease Control and Prevention) in the USA state that “Lyme disease is diagnosed based on symptoms, physical findings (e.g. rash), and the possibility of exposure to infected ticks; laboratory testing is helpful in the later stages of disease.”

As it happened my tests turned out to be negative. In these circumstances I explained to my doctor that I felt I should be given the benefit of the doubt. Luckily he/she proved to be open to the idea. I have already started to take the simple antibiotic treatment that might give me recovery. After some difficult times in the first few months of treatment, I am at last finding that I am having more and more better days. I can start to plan my life more. It is just great to be feeling better. I know of others who have done this and many of them have got their lives back. I have no regrets whatsoever about doing this.

(OR for those lucky enough to be well along on recovery road, perhaps give an example of how you took treatment in the past, recovered and now no longer have to claim disability benefit).

My experiences do not match up to the account that Ms Flint has given you and I am very worried for others who have not been lucky enough to do what I have done.

Yours sincerely

(See ‘Writing to your MP’ section)

(Around 670 words)

After you have written your letter you may like to print off our 'LDA Abridged Response’ and enclose it.

If your MP becomes very interested it may be worthwhile to give them the full response of the charity Lyme Disease Action.

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