Tuesday, 20 November 2012

Nerve conduction tests and treatment details

Just got back from being Robowifey! Had an electrophysiology appointment to have nerve conduction studies done. At last - a decent, open minded, hospital consultant! I had been referred to him by the 'you're like a world war 1 soldier' neurologist, but he wasn't fazed by her cynical letter and he approached the whole thing with an open mind. Infact I would say he was actually actively looking for objective evidence of abnormality, which is the opposite of most that I've seen, who just aren't interested.

So, if you've never had this test, it involves a bleepy machine with pads and thin electrodes coming from it. They stick the pads on you, and stick the electrodes in your muscles and zap you with electricity to see how well the various nerves and muscles conduct the signal. It sounds vile but it's not too bad at all, quite interesting to see the trace on the screen. He seemed really thorough and did pinprick sensation tests (prodding me with a needle all over) on my legs and arms. He found a stripe of numbness on my left arm and a patch of numbness on my left thigh that he said corresponded with the muscle weakness in my leg and twitching I get in my tricep. He said he thought it was indicative of a problem with the L3/2 nerve root and C6 nerve root- the bit where the nerve leaves the spine. He also found some slight dodginess in the muscle at the top of my left thigh, possible myopathy he said.

He seemed genuinely interested in Lyme and sounded like he knew about some of the effects that it can have, and he said that my negative NHS Lyme tests proved nothing, "absence of proof is not proof of absence" he said! Absolutely, and very refreshing to hear an NHS consultant who deals primarily with testing say that we should not rely on fallible tests to diagnose.

I do not expect the derisively snorting Neurologist to take any notice of his report and adequate NHS treatment is about as likely as me beating Usein Bolt in a run to the bus stop, but it was nice to leave the hospital not spitting feathers.

I haven't had any antibiotics for two days in order to be adequately wobbly for these tests, and it shows. I'm flaring anyway, but I have been getting the palpitations and random shooting pains back, which I haven't had for a while. By the time I get to the top of the stairs, I am panting like an old English sheepdog in a sauna. In stark contrast, last week, I had more than a whole week with no Lyme symptoms at all!!!!!! (well, one dizzy spell and a bit of twitching, but nothing else, completely normal walking). We had hired a cottage in the countryside for a week and I did 3 bike rides, carried my daughter for a walk in the forest on my own- all without any Elvis-leg after effects at all. Amazing. Of course, the day we got back, I started to flare, the legs went and it was flolloping about, business as usual.  I'm really appreciating the prolonged spell of near normality before I my spirochetes start to party again.

Back in the saddle.
Less than two weeks before I jet off to Washington DC to see my new LLMD. Very excited. They are very organised and you have to fill in a lot of paperwork before you go, so they have your whole history. There is a lot of history to compile, so it has taken quite a bit of effort, but it's mostly done now. When I was ill first time round, I was always looking for people's treatment details, so here are mine (I'd typed them up for the new LLMD). My treatment so far consists of:
Current treatment:

Since 11th July 2012 to present day
Azithromycin oral 1 g a day in two doses 4 days a week (alongside amoxicillin) plus Tinidazole oral 1g a day in two doses 3 days a week
Amoxicillin oral 3g a day in two doses4 days a week since 6th july 2012 to present day
Artesunate oral 80 mg a day in 4 doses 7 days a week since 6th July 2012

Levofloxacin 1g/day in two doses for 1 week 22nd June 2012-29th June 2012

Ribose 2 scoops daily every day since 6th July 2012

Magnesium Citrate 400mg a day in two doses every day
680 mg in two doses every day
every day since 6th July 2012

since 6th july 2012
Alpha-liphoic acid 800 mg a day in two edvoesreys day Since 6th July 2012 
Nutrient 950 (pure encapsulations) 3 caps daily every day since 6th july 2012
since 6th july 2012

Probiotic (klaire labs) 2 caps a day every day since 6th July 2012
Coenzyme q10 240 mg a day in two doses.

Previous treatment:

Amoxicillin 1.5g a day in 3 doses, 7 days a week 17th Nov 2009-end feb 2010.
Azithromycin 1g/day in 2 doses, 7 days a week 17th Nov 2009-end feb 2010
Rifampicin 600mg/day in 2 doses, 7 days a week, 2 weeks on, 2 weeks off. 30th Sept-17th Nov 2009.
Artesunate 80mg/day in 4 doses, 7 days a week, 2 weeks on 2 weeks off. 30th sept-17th Nov 2009.
Rifampicin 600mg/day 7 days a week continuously 15th may 2009-end aug 2009.
Artesunate 80mg/day in 4 doses 7 days a week continuously 15th may 2009-end aug 2009
Amoxycillin/azithromycin/tinidazole 1.5g/1g/1g a day 4/3 days aweek 15th Dec 2008-15th May 2009.
Ceftriaxone IV 2g/day in 1 dose, 7 days a week for 4 weeks, then 6 days a week for a further 8 weeks, 25th Aug 2008-21st Nov 2008
Doxycycline 200mg a day then 400mg a day everyday 9th June 2008, 400mg 19th June 2008-22nd July 2008.

Also, I had some high strength allicin, chlorella vulgaris, Rizol beta and Rizol Gamma oils, Quintessence, diatomaceaous earth, vitamins, and probably other stuff I don't remember Dec 2009-March 2010.


  1. That's a lot of ABs over the years! I think I'd have to put it into some kind of chart to make sense of it. Talking of which, I took your advice of making graphs of my symptoms and today I showed it to a doctor who was really interested. It really helped prove my point that certain symptoms are caused by the same thing and as a result I have another angle to look at in my recovery journey. So thanks for some great advice!

    I hope your trip to Washington is fun and productive! May I ask why you're going all the way there?

  2. HI Decimawho,

    Yes, I did completely recover for 2.5 yrs, no symptoms at all, which enabled me to live a normal life, do a demanding job and have a child, which was wonderful.
    Glad your chart was helpful, I have found mine to be very helpful to me and LLMD's but most normal docs not really interested, great you found one who was.
    I'm off to washington for several reasons, I want another baby and am 38, so want to make my recovery as time-efficient as possible this time round. I want a second opinion about whether I have co-infections or not, and I want to see a highly experienced world-class Lyme doc, just for a second opinion on treatment really. I can afford to do this for the time being, so I thought, Why not? Also, when I made the appointment, Dr S at the BS had gone off sick and I thought maybe she wasn't coming back.