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.....

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.

Tuesday, 6 November 2012

Feeling good and Lyme Protest starts

Woooooo!!!!!! I just had a whole day without any symptoms at all! Whizzing on up that rollercoaster with the help of my little antibiotic-fuelled jet pack. Marvellous. I even did loads of jobs (including a 3.5 km beach walk) and was still ok- no thunderbirds legs or anything. So chuffed, and the last few days have been fine as well, little niggles and bit of insomnia and  muscle twitching and slightly thunderbirdy walking, but mostly fine.

Got the letters from my Neurology and Cardiology appointments back. Not as bad as they could have been. 

The echocardiogram showed mildly impaired LV systolic contraction, a mildly thickened atrial valve, hypokinesis of mid to apical anterior wall, and mild hypokinesis of apical anteroseptum. So, I'm not a doctor, obviously, but the repeated 'mild' in there tells me it's not too serious! My palpitations and breathlessness on exertion have mostly stopped now, so I'm not worried at all. I didn't get chance to discuss with the GP. To be honest, I ration my visits with her so that I don't appear like a maniac hypochondriac. I've got an asthmatic cough following a cold at the minute, and I guess I could do with an inhaler, but I'm reluctant to go the GP and add to my already bulging file of notes.

The neurologist- well - GRRRRR!!!!!!. She stopped short of actually coming out and saying 'Functional', but she did say "It is very difficult to explain this lady's gait abnormality anatomically. It is unusual. It does not appear secondary to proximal weakness, peripheral neuropathy or ataxia and may not have a neurological basis. I have explained to her that unfortunately we do not always find a neurological cause for abnormal gait and that may be the case in this instance".

Right- so on the day I saw her, I had had no antibiotics for 3 days and was as weak-legged as a drunken kitten. I had a very weak left leg, which I could barely lift from the bed and it fatigued so quickly that she had to support my leg to do the reflexes. I could only just push against her on that side. I really struggled to do the heel down the shin test, especially with the left leg. I couldn't touch my finger to my nose with my eyes closed on the left side, I missed by more than an inch. Did she mention ANY of this in her letter? NO! she even denied proximal weakness and ataxia- which I was showing clear signs of!!!!!

She is referring me for nerve conduction tests. I doubt they will show anything, they didn't last time and my USA Lyme doc considers most nerve conduction tests to be too crude. Oh, and she called it "Lyme's Disease" twice in the letter. I can live with typos, but getting the name of the disease wrong is a bit much.

In other news, I made a crazy spur of the moment decision and offered to be UK co-ordinator for a Lyme protest to be held in May next year. The idea is that countries across the world join together on one day and each hold a protest against the lack of diagnosis, recognition and treatment of Lyme disease. I think it's a really good idea- the whole world is affected by the flawed IDSA guidelines- most countries seem to take their lead from this work of fiction, so we are all facing similar denialist attitudes towards chronic Lyme. The idea that Lyme and infected ticks and hosts respect arbitrary political boundaries is ridiculous too, yet people are repeatedly told "we don't have Lyme in such and such an area/country, so you can't have Lyme". What a crock of excrement. er-- birds fly you know! Mice, voles etc move about, even mammals can migrate and move long distances.  As an ex-ecologist/entomologist, I would be willing to bet a large sum of money that where there is suitable tick habitat, sufficient hosts, suitable temperatures for development of the ticks and pathogens, and where people come into contact with the ticks, there will be Lyme and it's little co-infection pals.

So yeah, lets all stand up (or sit down if you can't stand!) and be noticed. Recently there was a protest outside the IDSA conference in San Diego. It seemed a real success, alerting IDSA doctors to the controversy, see .San diego protest report.

I think a properly conducted, sensible (but visible and frank) protest in the UK, on the same day as the 15 other countries who have signed up, would be good publicity. I will do my best to ensure that the messages we put out are not too outlandish (please, no biowarfare references- I know people feel strongly about this, but I think the majority of Lyme sufferers see it as a distraction from the main issues). I don't mind references to diseases that Lyme has been linked to, as long as the links are substantiated by some scientific evidence. We need to make sure we have credibility in the eyes of the sceptical and conservative medical professionals/policy makers/politicians.

If you want to find out more, please see our facebook page:

Worldwide Lyme Protest- UK.

Get involved, come along or send someone in your place. If you are too sick to come in person, send us a message and we will put it on a flag for you. We hope to set up a website soon.We are not sure where it will be yet, but we hope it will be a great success.