Monday, 7 January 2013

Festive fun and new year bleargh

Well, I couldn't have asked for a better Christmas- lots of family, feasting, crazed tearing of wrapping paper and NO LYME!!!!! Thank-you Santa, just what I wanted. From about the 20th Dec to new years eve there was virtually no sign of the Lyme, which was amazing, such good timing. Not that I did anything to actively make that happen, infact I was SLACK! I mean, Slack, slacker than a bus full of pensioners wearing beige crimplene, stay-press and chinos. Slacker than a tart's knicker elastic, slacker than my jaw would be if the NHS competently treated chronic Lyme. I ate rubbish and tons of gluten (turkey butties, who can resist?), drank a fair bit of booze, didn't keep a diary and stretched my remaining drugs out by not taking them for up to 5 days at a time (I was waiting for my new supplies to arrive). I was absolutely fine - even went on wee walks and had people come visit and cooked lots of meals - nothing Lymey happened. Very very pleased. must be a good sign and I hadn't even started my new drug regime!

Of course, it couldn't last and new years eve it came back and I spent the evening welded to the sofa watching  the tremendously violent Kill Bill. My delicious 'yellow paint' Mepron had just arrived, so I could crack on with my new protocol.  Counted out my new tablets and supplements into my ginormous pill box and slurped down my Mepron ($15 a spoonful!!) with a chaser of olive oil and raw almond butter. A study showed that it was much better absorbed when taken with 23g fat, so, to get best value out of my lovely liquid gold, I thought it best to chow down gross quantities of fat with each dose.mmm..lardy.

'Mummy sick, mummy tablets' as my two year old has now learned to say, bless her....

Not all of my supplements are here yet, annoyingly what appeared to be UK amazon shops, turned out to be US amazon shops, so I've got to pay £26 customs charges to get my remaining loot. grrr...

What is really suprising though is that so far, I haven't really noticed any herx from my new regine and I am a week into it now. The Mepron makes me nauseous, and I have had increased tinnitus and fatigue, bit of insomnia and disrupted sleep and am wobblier than a plate of underset pineapple jelly, but my head hasn't exploded, my legs haven't dropped off, an alien hasn't erupted from my stomach, which is nice....just the usual flare-week grottiness, and I can cope with that. Maybe the Amitriptyline has erased any neuropathic pain, or maybe my bacterial load was pretty low to start with.  I have always been on treatment (except for a few brief breaks) whilst symptomatic and so although chronic, I think my spiros are relatively few in number and thus my herxes are relatively mild.

Still pretty exercise intolerant though. John and I took the wee one swimming yesterday and I got rather ambitious and did 16 widths of the pool. What was a slight weeble wobble on the way to the pool turned into a mega-jelly-weak-as-an-anorexic-kitten wobble on the way out, and I'm still feeble and flolloping today, even put the bath stool back into the shower this morning. Thank goodness for my childminder and my wonderful John.

So, back down to earth with a splat and a wobble after a fab break. Learning to be gluten free (the pasta is fine, found one nice bread- tesco ciabatta rolls) and wearing my new onesie (thanks Sis!) whilst it chucks it down outside and I plan the weeks menu- all healthy, low sugar, no gluten, no booze, unfortunately ;-).


  1. Glad you've had a good time!

    Wanted to have a good pick around in your brain about the artesunate in the pic. It looks like it says take two, four times daily. So that's 160mg a day? I'm on artesunate at half that dose. I also strongly suspect I have babesia, is artesunate the treatment for babesia do you know? If so, could my dose (80mg a day) be the reason why some of my symptoms (a headache every 4 days, air hunger) aren't improving?

    Loving your blog, wish you were on wordpress so I could follow it easier. Grrr *grumble grumble*

  2. HI Decimawho, well spotted! It does indeed say two tablets four times daily, BUT I think that is a mistake, as on the phone and in a letter, Dr M (who prescribed for me in the absence of Dr S) said to take 80mg daily in four doses, so I don't know why it says that on the label and I only just noticed it since you pointed it out now!
    Yes, Artesunate is supposed to be for Babesia, but I don't think Dr S or M were totally convinced I had babesia, perhaps it was a 'just in case' you have babesia type of thing. I think I remember Dr D saying it could well be active against Borrelia as well, certainly artemesia does seem to be broadly anti-microbial. I'm still on 80mg but only 3 days a week now (mon wed fri for two weeks then a week off). I have been hearing from other LLMD's that this pulsed approach to artesunate is better, something to do with you not building up tolerance to it or something along those lines. I am also now on Mepron as well, which is for Babesia that the new American doc thinks I have. The azithromycin will also treat Babesia, and I feel for me that this is a key antibiotic. Details of my new treatment plan are in the washington blog post. Air hunger and headaches every 4 days does sound like babesia, I'd agree.