Not a Top 10 List

1. I fear I'm driving the neurologist mad by emailing him too often asking when the biopsy will happen.

2. He seemed, to my super-sensitive, neurologically befuddled brain, a tad curt in a reply earlier, giving little away other than that he'd pass my enquiry on to a colleague.

3. Oh dear. I didn't ask to be ill with Lyme, the biopsy wasn't my idea and it was the neurologist who said - two weeks ago - that it'd be happening quickly lest the rash disappeared.

4. As it happens, the rash seems to be undergoing a renaissance. Ali down the shop noticed it this morning and Karen confirmed that it's looking quite impressive. So why worry about waiting for a biopsy! My rash is in fine fettle and doesn't seem to be going anywhere in a hurry!! RELAX WITH THAT RASH!!! WHO CARES ABOUT THE BIOPSY?!?!??

5. Well, the problem is that I'm driving myself mad thinking about what Lyme has in store. Perhaps nothing - maybe my immune system is mostly Lyme-proof.

6. After all, the lumbar puncture proves (quaint concept!) that I haven't got neurological Lyme.

7. So I'm left with the severe fatigue, lousy headaches and inability to cope with unexpected noise - all of which might (who knows!?!) be caused by something other than Lyme.

8. Despite, that is, the four positive blood tests for Lyme and the lovely and ongoing erythema migrans rash.

9. As to which (and Lyme generally): for all that people advise me to seek private treatment, this isn't an option.

10. So I sit around, stupidly waiting for a biopsy, which won't in itself be conclusive evidence that I haven't got Lyme if it's negative. I can't think of anything to do, other than work and, every two or three days, compare the way that my cervical myelopathy was treated with the way my Lyme disease is going. The comparison only ever yields one result: I email my neurologist to ask "Any news on that date you promised - you know the one, the rock 'n' roll, really sexy autopsy, I mean biopsy?" And in doing so, I'm sure I drive him mad, which probably doesn't help me get the treatment that might get me better, and just adds to my own madness - and so the cycle continues.

(That was not a Top 10 list. Ed.)

Comments

[Jan]

Alex, have you contacted Bada-uk yet? You say private treatment isn't an option, they may be able to help you get the right information together for your GP to treat you. Alternatively, an initial appointment with a private consultant would not necessarily mean a huge financial outlay, as they would be able to inform your GP what treatment you should be on. I'm concerned this delay will cause further damage.

It sounds possible to me that your neuro is actually delaying or backtracking due to the political nature of it all:-( I have known people with seemingly good support from their 'specialists' who have suddently stopped being supportive and dropped them.

[Best neurosurgeon]

Your blog is awe-inspiring. I have found many new things. Your way of staging is also fascinating. You have elected very incredible topic. I appreciated it.

[Ticksick]

Sell a surfboard, sell a wetsuit, sell anything to fund the first LLMD appointment.

You already have plenty of positive NHS test results, so no need to spend further money on private tests confirming borrelia in the first instance. Your GP may then follow prescribing recommendations made by LLMD and then you will be on the right path to better health.

[sandy]

And if all that fails - why not let's all fly to China!! We could charter a plane. Do they have surfing there? Oh here we go: http://www.youtube.com/watch?v=4hVw2vMoJdg
and also: http://www.foxnews.com/search-results/m/29232054/surfing-pooch-promotes-chinese-school.htm

Sorted!

[Joanne]

Alex I think you have joined the denialists.

http://www.expertbusinesssource.com/articles/blog/1260000326/20090911/head-in-the-sand.gif

I think you need to be proactive if you want to enjoy this again.

http://www.extremesportscafe.com/Graphics/surfing/surfinginthecurve.jpg