LLMD letter, excercise intolerance, nightmares and LDA uncertainties

An exciting pick and mix of a post this week folks, some juicy detail on my American consultation, super sour sleeping issues, fluffy flump marshmallow leg video and  a fizzy stick of news from Lyme Disease Action to round things off. Yummy in my tummy.

So, got my letter through from my American LLMD. Wow, 11 pages of small text, what detail! The things they noticed are amazing - things I didn't even realise they were observing! 6 pages on my history alone, and all accurate. Skin- she calls the rose spots cherry angiomata, notes mottling of skin and moderate dermatographism- which is a tendency for skin to form raised welts when scratched (googling this is fun- I am now seriously tempted to write messages on my arms by scratching them- what hilarity- who needs notepaper!). This may or may not be associated with thyroid/autoimmune/coeliac problems, there seems to be little reliable info on it. Cherry angiomata could possibly be associated with Babesia or Bartonella, wading through the guff google churns out on the subject is tricky. They are very common though and many normal healthy people have them.

Have some exciting things going on facially- one eyelid was slightly droopy and the laughter line between nose and mouth on that side was flattened (I'm assuming this means I'm either just naturally a bit picasso-like or could have slight cranial nerve damage). Slight Saccades noted, which I think means my eyes track a bit jumpily. I had moderate fascicilations (twitching) of my tongue- wow! I hadn't noticed, but had noticed twitching of my other muscles, especially thighs and triceps. She calls the spots on the inside of my cheek 'Petichial lesions'- but doesn't say what this means - she told me it was a Bartonella sign. My gag reflex is intact but hyopreactive- so I'm guessing this could indicate some cranial nerve damage. ' They note a 'full' thryroid and ask for a thyroid ultrasound due to some patients having developed malignancy of the thryoid. (I'm sure the NHS will ignore this). 

Neurologically, I have diminished strength in legs and grip. Dysmetria- the tendency to overshoot or undershoot- was noted on heel-to-shin test and finger-to-nose test on the left. I was really pleased to see this- this has been a consistent finding on all neurological tests when I am wobbly (goes away during good periods)- the  NHS 'you're just a nutter' neurologist saw this on me but completely ignored it in her letter about me.

Cardiac- a grade 1 heart murmur is noted. They ask  my GP for an assessment of cardiac arterial status since they have seen patients develop premature atherosclerosis and vasculitis. (GP says she will ask but the cardiologist is likely to say no).

She notes a positive Murphy's sign on abdominal exam, which she is concerned could mean a buggered gallbladder (subacute cholecystitis) so she asks for a scan- the GP has already said the hospital are likely to say no to this. 

They go on to detail treatment plan and recommendations,- nothing is missed, but no outlandish claims are made either. All very thorough and professional and not at all 'quacky' sounding. I'm impressed.

As for my health- I've been having a good old ride on the Lyme rollercoaster this week. Seemed to be improving after a flare, but then went downhill again- vile technicolour nightmares (are there any disaster/horror movie makers out there who want some ideas?), insomnia, weakness, fatigue, nausea, brain fog, and a bit of tippy feeling back. Not sure whether it was a Babesia Herx (Lyme MD blogger thinks they do exist) or just side effects of my scrumptious Mepron- it takes two weeks to reach therapeutic levels apparently and can cause some tasty side effects. I had similar nightmares and depression/mood swings when on mefloquine (for malaria prophylaxis) years ago, so I'm thinking the Mepron (a similar kind of drug) could be the culprit. I am pretty exercise intolerant again -  I went swimming again with kiddo and John and have a good illustration of what happens when I do that (video below):

 

As you can see-I'll not be doing any ultra-triathlons anytime soon. The effects lasted for a day and a half- quite annoyingly. Before I got ill again, I was getting my fitness back, doing hill walks carrying the bub and decent length bike rides- just doing the household chores was a challenge yesterday. Humph.

In other (much better!) news, Lyme Disease Action have just published their review of the uncertainties- a collaborative process with the James Lind Alliance, patients and clinicians. The Department of Health and the Health Protection Agency were there, to witness the proceedings and so they could see it was a rigorous and transparent process (let's hope they were listening!) . Here is the top 10 list of things we don't know about Lyme disease. 

Now, to an educated Lymie and most LLMD's, this may seem like stating the obvious- we have always known that there are big holes in the knowledge about diagnosis, testing, treatment and transmission routes. However, it seems that the 'officials' and most doctors didn't know this- apparently, many doctors told the LDA that they thought there were NO uncertainties regarding Lyme disease! Not surprising, really, the (IDSA) guidelines and BIA position statement really overplayed the 'long term antibiotics don't work' hand and 'diagnosis is easy, Lyme is rare, testing is reliable,' seemed to be the message given out by the HPA over the years. This was a gross misrepresentation of the Lyme Literature. At last- it's official - there's lots we don't know about Lyme. 

This process may seem like unnecessary, tedious red tape to some Lymies, but I think you've got to play the authorities at their own game- what the LDA have done is move us from a fringe, sidelined position and got us represented - in an official capacity- to get the truth out to the mainstream medical community.

I can't thank them enough. Of course, this is just the beginning, much work has now to be done publicising the findings and filtering them through to policy and research.

 

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 ;-).

First trip to Washington

Hi folks, some of you may have noticed, I took down my Washington blog post. After some editing, I've now put it back up, so here it is:

 

Well, what a busy couple of weeks it's been. My dad and I went galavanting off across the pond in search of the famous Dr X and his gang. Four flights later, I'm back in blighty and very glad I bothered. Dr X and his able PA (Physicians Assistant, kind of like a Dr 'Lite') were fab, the level of experience just really showed. 

My dad and I at the White House (sniper on the roof!)

First of all, their clinic is quite well organised it seems. You have to fill in long forms and write out your chronological history and send all test results before you go. They then can review your case before they've even seen you, which saves a lot of time- and we all know we forget things at doctors appointments. Some people might be put off by seeing a PA, rather than a 'real' doctor, but to my mind, this is just an efficient way of doing things- the PA (we will call her PA), went in to consult with Dr X several times during my consultation and my meds schedule was drawn up by them together. I was there for around 2.5 hrs. Dr X also came in to say hi and explain a few things at the end. Seeing PA meant I could get an appointment within 6 months, unlike most LLMD's who are either not taking on patients or there is a huge waiting list. Also, it's really good value for what you get- my consultation was approx $650, which for 2.5 hrs, plus the write up and aftercare (you can ask triage nurses questions for free), I think is good- when compared to similarly qualified professionals hourly rates. 

They are also really honest- they give you this big spiel to read about how there are other options (IDSA treatment or no treatment) and that they cannot guarantee results, and that no-one knows what the optimal treatments are as the science is lacking. I was impressed with this. You get given plenty of time to read this and then have to sign to agree to being treated with long-term  therapy, which may or may not produce results.

They are quite drug-heavy, which I am fine with for the antimicrobial drugs, but I felt they were a bit OTT in my case with the pain and sleep meds, which I have decided to not take for now as I don't have that much pain. I talked to my GP about it (an intelligent woman who seems to believe me, but is stuck in the middle between a believable patient and two Lyme-denying hospital docs). She has prescribed me something for neuropathic pain (which is intermittent and relatively infrequent but when I do get it, it does stop me sleeping). So I'm taking 10mg Amitryptyline just before bed, which has a side effect of drowsiness, so helps me sleep. I get insomnia in bursts of 3 ish days, but not at the 4 weekly flare time, so I'm thinking that it might be a Babesia symptom.

So, PA took my history, and said she thought I definitely had Bartonella and most likely Babesia. She saw small raised spots on the insides of my cheeks and what she called rose spots on my front. She said these were indicative of Bartonella. No-one has picked up on this before, but when I look it up later, I see that she is right. I remember commenting on the rose spots to John when I first got Lyme- I wondered whether they were related as I couldn't remember seeing them before and they were close to the site of the bite. They seem so insignificant though, that I just dismissed it.

'Rose spots' on my torso (the bigger one is just a mole)

As to the Babesia and other co-infections, I asked what co-infections did she think I'd got and why did she think that. She said "probably all of them" and she said it was just "because I'd been ill so long, had relapsed, had persistant Lyme". "most of our patients like this have the co-infections". So, I guess it's just statistical probability that I have them. They didn't do co-infection testing for me because the tests are so unreliable and also, it would be expensive and I don't have insurance. I have negative Igenex for Babesia microti, Ehrlichia and Bartonella henselae, but she agreed that that "means nothing". So, they are treating me for Babesia (Mepron and Artemesinin), Bartonella and Lyme. PA said my earlier rash pictures were a dermatological Herxheimer reaction, she has seen it in other patients- excellent!.

They did a physical exam and she heard a grade 1 heart murmur. This was probably the slightly thickened valve seen on my Cardiac ECHO.  I wobbled forwards on the Romberg test and was doing a great C3PO impression on the day. I had stopped my antibiotics for 3 days prior to my appointment, so was lovely and symptomatic. I struggled with the heel down the shin test, but not sure whether this was just weakness or Ataxia. My hips didn't crunch, so no obvious arthritis there, despite occasional hip pain.

I also got a name and an explanation for my thunderbird legs- Acute plexitis. Marvellous! Dr X explained that he thought the Lyme was residing in a biofilm near the nerve roots and then could come out and attack the nerve roots when flare time came or I stopped popping pills. This would explain the Neurophysiologists observation that I "probably had C6 and L2/3 nerve root involvement" (he found subtle numbness in a stripe on my arm and thigh, which was also innvervated by the nerve root which innvervates thigh flexion and triceps (my triceps twitch sometimes).

PA had seen my walk before in patients (yay!) and thought it was the Lyme causing it, and also said the cardiac hypokenesis and conduction delay were Lyme-related. So "SOD OFF!" to the stuck-up Neurologist who said "your walk can't be Lyme as it is not ataxic or spastic"... nah na na na nah...;-)

PA also noted that I was tender just below my right ribs, which is where the gallbladder is situated. She said gallbladders are a kind of seat of infection in Lyme. The bacteria invades the gallbladder walls and can destroy it, turning it necrotic. It can also be a sneaky little hide-out for the little turkey-twizzling buggers, as antibiotics penetrate the gallbladder poorly. So, sometimes Lyme patients have their gallbladder whipped out. She said to ask the oh-so-obliging NHS for an abdominal ultrasound (which will probably come back normal) and a HIDA scan with CCK challenge, which will see if it is functioning properly.

PA also thought that Lyme was sexually transmitted. She said that if someone did a proper epidemiological study, they would find evidence for sexual transmission- so be careful out there folks...

She also said she thought it could probably be transmitted by vectors other than ticks, she mentioned mosquitoes, but didn't cite any particular evidence.

They also asked for a Thyroid ultrasound and nuclear stress test to assess coronary artery status. Apparently, she has seen coronary artery disease in patients with no other risk factors apart from Lyme. I had read that Lyme messes with the Lipid metabolism and I do have a slightly raised cholesterol. I since asked my GP for these tests, but she is doubtful the cardiologist/endocrinologist will do them but she is asking for me.

I also have to have a full blood count and liver function tests every 4 weeks, the GP is happy to do this. They took some routine bloods and checked Thyroid free T3 levels whilst I was there (haven't got results yet). They felt my current treatment was suppressing the bugs but not doing a lot of killing, which was why I relapse so quickly when off the tablets.

So, my treatment plan? Enough oral antibiotics and supplements to stun a horse, but pulsed, with drug holidays (I love that term, does that mean I get to sit on a beach in a sombrero, sipping sangria every three weeks??). THANK GOODNESS I don't have to do IV (well, not at present, we can never say never with this disease said Dr X).

My schedule? Hold on...are you concentrating?....I shall say this only once (it's complicated!)...

Week 1- Mon, Weds, Fri, I take:

Cefuroxime 500mg twice daily

Azithromycin, 500mg twice daily

Mepron 2tsp twice daily

Artemesinin 1000mg twice daily.

Week2-Mon Weds Fri, I take

Cefuroxime 500mg twice daily

Azithromycin, 500mg twice daily

Mepron 2tsp twice daily

Artemesinin 1000mg twice daily.

Tinidazole 500mg twice daily Thurs and Fri

Week 3- No antimicrobials at all (eek!, scared!)

Start over at week 1.

Supplements I am to take (every day apart from not taking alpha-liphoic acid and co-enzyme Q10 on days when I take Mepron and Artemesinin), are:

Alpha-lipoic acid 400mg daily

Co-enzyme Q10 400-600mg daily

Magnesium malate 1250 mg twice daily

Methylcobalamin (B12) 5000mcg daily

Methylfolate (deplin) 1000mcg 3-4 times daily

Nattokinase (a biofilm breaker) 50-200mg daily

N-acetyl L-Cysteine 500mg twice daily

Omega 3  1000-2000mg twice daily

Probiotics1 to 10 billion CFU daily in 3 or 4 divided doses

Resveratrol (extracted from skin of red wine, grapfruit and japanese knotweed) 250-500mg once daily

Saccharomyces Boulardii (a probiotic) 100-200mg twice daily.

Phew!

They also prescribed Neurontin, Lamictal and Ativan (lorazepam) for pain and sleep, but as I said, earlier, I'm going to pass on these for now.

The Mepron is pricey, the cheapest I could find is from CanadaDrugs.com at around $660 dollars a bottle This is apparently around 3 weeks supply or maybe more with the pulsed dosing, I have just ordered one bottle for now to see if I'm allergic to it or anything. Takes 2 weeks to arrive from Canada (you fax the prescription). As for the other stuff, the supplements are ordered online (I did it all on Amazon shops, probably not the best way, but they had the recommended brands in UK Amazon stores and it was easy). The Azithromycin, Tinidazole, Cefuroxime I got whilst I was there. We tracked down a not-for-profit pharmacy hidden on the 6th floor of an office block (AHF Pharmacy) and they were much cheaper than normal pharmacies. They ordered stuff in next day for me. They had Mepron, but it was twice the price of Canada Drugs, so I didn't get it. I also got my Neurontin and Lamictal from there. Total cost of these drugs (3 months supply) was $343. The supplements I ordered since, were £180 (some were three months supply, some less). The flights were £550 each, hotel was $400 each (two rooms, 4 nights). So, not a cheap trip, but in terms of Dr X's clinic, certainly not a rip-off, and waaaaaaaay more affordable than IV. I don't have to go back for months, they are letting me have a phone consult for a follow up in 10 weeks. More Yays!

Overall, I'm happy with their expertise and happy (but nervous) about the pulsed/drug holiday idea. Letting your immune system kick in and do some work seems good idea in principle, but also scary. I need to be able to function on my weekends and week off. I don't start it until the mepron arrives, as I want to be on the full whack when I do, so we will see what transpires.

Oh, and they say I've got to go Gluten free, as most of their patients have Gluten-sensitivity. I don't have massive issues with Gluten I don't think, but have had cramps a few times from eating bread, and did read one paper showing Gluten sensitivity can cause ataxia, so will give it a go (whilst hankering for toasted muffins and crumpets).

In other news, the Lyme-denying, derisively snorting Neurologist sent me a letter which is massively infuriating. She is not telling the whole truth (as she also failed to do in her consultation letter) - by omitting detail that contradicts her preconception that I cannot have Lyme. The electrophysiologist's observations of likely C6 and L2/L3 nerve root involvement are not mentioned at all. Neither is the finding that there were possible mild myopathic features on one nerve. Instead, she says "this has not shown any evidence of generalised neuropathy, nor has it shown any definate myopathic changes or neurogenic features" She then offers me a Psychiatrist appointment. Humph.....this is highly unprofessional and I will be making a complaint. She is pretty much lying, which is just not bloody on, you bitch!!!!!!!! (I will word my complaint slightly more politely than this!).

So it's thumbs up for Dr X and Washington in general. Blew apart my preconceptions of American cities- not full of hot dog munching chubbers, unable to walk further than to the fridge and back. No, it was full of joggers, health food shops, funky supermarkets, normal sized portions of decent food. It was also quite walking friendly (apart from the mhhhassive intersections which were too big for my underpowered pins), and dripping with free museums, squirrels, students and blue jays. We even stumbled on the presidential cavalcade one night (blimey, the land of the scared, can't see David Cameron requiring closed streets, 20-car escort, police outriders, choppers etc- madness). All good

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  http://lymeinthecoconut.wordpress.com/ and http://lymeandtheco-infections.blogspot.co.uk/ 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.....

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
L-carnitine
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.

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.

Lidl legs and Lymey Links

Roll up, roll up ladies and Gentlemen! Come and ride the rollercoaster of Lyme. Shoot along a spirochete, blast through a neuron (but watch out for falling debris, it's Myelin sheath is falling apart), whizz round an arthritic knee and end up in a brain punctuated by mysterious lesions. Maximum ride duration is 30 days, after which you don't officially exist, so you will be jettisoned into a giant skip.

I can see it in Blackpool now.. except no-one would go because they'd all be to tired to get out of bed.

So yeah, I was on the slowly ratcheting up-slope and have been on more downward trajectory just recently.

Had a bit of a funny turn in Lidl. I'd been feeling a bit wobbly and rough anyway, but especially nauseous that morning. I perhaps had low blood sugar. I'd had had my fruit, yogurt and oats for brekkie, but the porridge that I'd made to eat before we went was as appetising as a bowl of warm pedigree chum sprinkled with cat sick- so it went uneaten. I'm trundling along trying to ignore the aisle of forbidden pleasures (Christmas sweet treats in already and it's still October). The mannie is testing the new bread ovens and they are sending out stinky fumes all over the shop. The trolley was being particularly un-cooperative and trying to mow down dawdling grannies. I start to get nasty stomach pains, then get really hot and have to strip off to my unflattering base layer. I feel a bit woozy and then feel the legs going. Grabbing onto the trolley for support, I make it to the checkout. The checkout guy is looking at me as if to say "tut, another middle-aged harassed mother on the gin". I'm lobbing the groceries into the trolley with one hand, holding onto the checkout with the other, trying not to keel over. I sit on the packing shelf wondering what am I to do? I can't walk unaided, let alone lift the shopping and my (now whining) toddler out of the trolley and into the car. Driving home would be a touch dangerous methinks. We both eat a cookie and have some juice to see if that helps. It doesn't, but it pacifies my daughter somewhat. In tears, I ring my wonderful partner, John, who arrives on his bike 20 mins later to rescue us. My knight in shining Lycra. I felt really rubbish having to pull him out of work. He looks after us for the rest of the day as I am just a torso attached to a useless pair of legs.

I am a bit wobbly and feel crappy for a week or so after that. Don't really know what that was about. Looking at my diary, it could have been my monthly flare up a few days later than expected. It's not normally that sudden and dramatic though. I guess I should just force myself to eat before attempting the weekly shop. It wasn't like I was particularly stressed, it's very physically demanding at times, but I like food shopping- all that yummy food!!! Ach well, at least I got my bargain pomegranates and avocados...

Lidl legs

So, I thought I'd put up some links to sites I've found particularly informative and helpful. (I would like to do this in a side bar so they are always visible on the blog, but can't figure out how- if you are less of a numpty than me, can you let me know how to do this). Anyway...

Very recently, a Really good, short, intro article was written on Lyme - by a safety union! Really, officials should take note of this writer, its very well researched (I might be a bit biased as it does mention this blog;-)).

For all aspects of Lyme in the UK, the most authoritative place to go is the Lyme Disease Action website. They are a reliable source of information- they have certification from the Information Standard, which is an independant certification scheme for health and social care information which was developed and supported by the Department of Health. They have an excellent range of leaflets, you can print these off and give to GP's or whoever. You can also contact them to request leaflets which you can distribute to doctors surgeries, vets, wildlife visitor centres etc. If I want to fact-check something to do with Lyme, I often use the LDA website. They are also incredibly helpful if you need help with a specific query.

Another good UK website is BADA-UK. They cover more of the preventative side than LDA and have particularly good sections on co-infections and tick removal. Tick removal tools can be bought from BADA and LDA. BADA also sell a DVD called One Tick Away that is worth watching, and they have a children's book- good for schools/youth groups perhaps?

A hidden gem of a website is Brighton Lyme disease support group. The diagnosis and treatment section is particularly good and gives a really good, balanced picture of the situation with Lyme in the UK.

Another site is Tick Talk Ireland. They - rather brilliantly, organised a conference on Lyme in Ireland recently, and they have a particularly good section on testing.

Talking of testing,  these guys at Lyme Research UK are doing a lot of good work on public health policy and Lyme, investigating the failures of testing, and have done a survey on Lyme in the UK and Ireland.

If forums are your thing, I recommend Eurolyme. Like all forums, there is a diverse range of opinion on there, but I find most people to be helpful and reasonably sane and knowledgeable. Unlike some forums, there is no flaming. It is moderated and you should check out the rules before posting. I have found it invaluable over the years, but you sometimes need to ration your time on it as it can be a bit depressing- you should remember it's mostly the sicker individuals who are on Lyme forums, those who have recovered are usually busy living life again.

Blogs can be a bit hit and miss, but there are some I've found to be really informative and helpful and they are all intelligently written- we are not all hypochondriac nutters!

An encyclopedic site is that of  Joanne Drayson. She is a chronic Lyme sufferer  and is always putting up links to lots of Lyme articles. She's amassed a lot of knowledge over the years and is very helpful to newbies on Eurolyme. There might be the occasional thing I think 'whoah, that's a bit far out' but mostly, she talks a lot of sense.

A new blog that I have found hilarious is http://decimawho.wordpress.com/This very funny lady is being treated for chronic Lyme in the UK. A very honest account.

I also like this from another Scottish Lymey Near Horizon. Well written, useful.

Further afield, this blog from a US Lyme doctor. is super-informative and gives a real insight into how a good Lyme doc in the US diagnoses and treats patients.

For a distillation of technical Lyme info into easily readable layman's terms 'Lyme guides', see these articles by sufferer-scientist  Tom Grier. They are really useful.

You will find links to various guidelines within all of those links, but I will be talking about guidelines and what I think of them in a later post.

That's all for now folks, hope you are all ratcheting up that rollercoaster.