Lyme Update

Despite a day or so of electric shocks, mainly in my left hand, and deep, unpleasant spinal reverberations (which I blame on a wobbly post-spinal surgery blip, rather than anything else), I have written to those who know the answers with questions about Lyme.

To date, my questions have not been answered satisfactorily, or, er, at all. 

However, these are early days. I don't expect a prompt solution to my problems, nor even a swift answer to my emails. I am merely one of scores of patients. I recall from my days in the law how difficult it is to allocate time to deal with every client. Often enough, the ones who were imminently due in court would be prioritised. So it must be in medicine, too. Those who are on the critical list must come first.

I'm not on the critical list. But I am seriously, perhaps even critically, perplexed by what's happening to me.

Comments

[Richard]

This is genuinely crappy, Alex. How can they tell you you've tested positive for Lyme but might not have it, especially when all the symptoms quite clearly show that you have got it? (I mean, you haven't got it.) Are the doctors that bad or is Lyme really that rare/hard to diagnose/hard to treat?

It's eye-opening to read all this. Did you mention how you got it or how you think you got it? I think it's great that you're raising awareness and I really hope you'll be up and surfing again soon. All the best.

[Tarnya White]

I would love to know who you have written to and what they have to say.

Personally, I would stop relying so heavily on them and their tests to prove if you have Lyme or not. You know you are ill, you have the rash and ample evidence of persistent infection. You are bright. Take control of the situation. Don’t wait around while those unqualified to do so decide your fate. The longer the infection is left the harder it is to treat. No one is better able than yourself to make decisions about your health and well being. No one will fight as hard, as you have to fight when it comes to Lyme, to get appropriate treatment.

Only someone familiar with the disease can diagnose it. Only someone experienced in treating it can effectively do so. The NHS don't seem able to offer you either of these…

You are very unlikely to get that, oh so rare, CLINICAL DIAGNOSIS out of the NHS now – too much publicity and where is the expertise to make it anyhow!

If you can, go and see a Lyme literate doctor. (We took my son to the States – with great results).

Good luck, keep strong. Keep writing. Lyme is a medical scandal in this country, it needs to be aired.

[Sarah Chissell]

Alex
Don't accept that you are merely one of scores of patients. You are the most important one, as far as you are concerned.

Please read "Cure Unknown" by Pam Weintraub. This book will go some way to answering your questions.

I wish you a speedy recovery but it may take some time. Please take control of your destiny.

[Ali Edwards]

Alex - I read your column often. We holiday in Sennen each year: it is the most beautiful part of the country. I am sorry to hear of your ongoing battle re: Lyme, not least as I have just got my GP to agree to test for Lyme. I have been unwell for 3 years with various symptoms ranging from sudden onset dizziness/disquilibrium, visual juddering, wooziness, fatigue and then recurrent mouth ulcers and now joint pains. All of these tend to come and go in phases and have been diagnosed variously as migraine vertigo, basilar migraine, menopause, virus and age. Having read so much about Lyme I really do not hold out much hope getting any resolution from the GP but he has also referred me to rheumatology too so may get some help there. Good luck with your battle. Hope to see you surfing at Sennen in July!