Monday, 26 November 2012

Pre-USA visit nerves

Bleurgh.... I've been feeling sick for the last 10 days or so, always such a disappointment after feeling completely fantastic for more than a week before that. That's the way the Lyme cycle goes, you'd think I'd be used to it by now. I am slightly worried that I'm plateauing a bit- my palpitations have returned and have been quite nasty, sometimes I feel as if my heart is just stopping, but thank goodness it's always got going eventually. I've been getting a lot of nausea and the tippy feeling has returned intermittently, which had been gone for a couple of months.  I have also found I've been tpynig ervy bdaly, muchos spell checking. I have a mild temperature (37.8) and feel grotty. I have a tiny appetite, which was such a shame when a kind friend made me a lovely afternoon tea. I wondered whether the 2 day antibiotic break that I'd had for the neurophysiologist has set me back further than I anticipated..

I've been getting a bit anxious about the visit to see my new Lyme doc in Washington DC. It's only a week away now and I'm starting to worry about the pulsed regime that they use, and the cost if I have to have IV. I have been reading a couple of blogs and which are written by patients of this doctor. They are encouraging in one way (the patients are improving on the regimes they are on and generally seem to believe in their doc), but also, they seem to be on a lot of drugs, some quite heavy duty IV abx and one of them got sepsis in their IV line, which was a real setback, but apparently quite rare. The picture of the Herxheimer rash in one of these blog posts was identical to my rash - rather interesting. The logistics of it all are not clear to me either- how would I manage IV from another continent? I'm pleased that they seem to use IV Clindamycin rather than Ceftriaxone, which is potentially dangerous for your bile duct (and Dr S who I have been seeing doesn't seem keen on Ceftriaxone again for me).

I'm worried about the concept of having a drug holiday and pulsed regimes. The pulsed regime is that you only have (high dose) antibiotics (IV or Oral) three days a week, Mondays, Wednesdays and Fridays, I think, and then at some point, you have a two week drug holiday, where you take no abx. The idea is to try to stimulate your immune system into kicking in and recognising and attacking the infections. Sounds like a good idea in theory. I'm nervous about it though, I have a toddler to look after and cannot just lie on the sofa all day if I get really sick. Also, I think my Lyme is strongly neurological and does seem to be the 'fast and nasty' type as opposed to the 'slow burn' type- I go downhill quickly when not on antibiotics and I can't afford to lose mobility completely. I also worry about permanent nerve damage if I let it get out of control. I guess they will take this into account. The timing of my appointment also could be better- if I start on a  new regime, will I be herxing for Christmas? (Dear Santa, please can you bring me a sick bucket and wheelchair for Christmas). Due to my sister having a baby just before Christmas, we are driving the 8 hrs down to my folks, and then driving back and having guests stay with us for several days- all really exhausting stuff. I hope I can cope.

Just dithering also about whether to stop my antibiotics for a while before I go. I was going to stop today, but he way I'm feeling, I don't think I'll be able to travel if I do. The idea was that I would stop them so that they could see my funny walk (Ha ha, hilarious, well, it is when my toddler mimics it!) and maybe, just maybe, I would be more likely to test positive for co infections if I was off the abx. Also it would be informative as to whether I could handle a drug holiday or not. Argh -- the indecision!!!

Ach well, had better get on a do the last preparations before going. Typing my diary into excel- what joy, organising photocopies of all my tests and letters and getting the washing mountain cleared are on today's to do list. Oh, and perhaps remembering to eat might be a good idea as well.....

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