Sleep and time travel

I have been having an exciting time of it recently, traveling the globe (well, a week in Spain) and indulging in a spot of time travel whilst I was there (temporarily inhabiting the body of a frail 80 yr old woman, which was nice). All rather exhausting, so I've been thinking a lot about the land of nod and it's importance for health.

So, Spain. We had family 'do' on the Costa Blanca - My Grandma-in-Law had her 80th birthday, so we flew out to see her and had a wee break. Due to a hermetically sealed, sauna-like travelodge room and a restless toddler, we had no sleep the night before we flew.  So we get to Edinburgh airport in a state of advanced Zombie-ness. Industrial quantities of tea kept me going until we got to Alicante, when my legs decided they'd had enough and turned to silly putty. Cue using the buggy as a walking frame, feeling tired and ratty whilst trying to appease a tired, ratty two year old. By the time we'd got to the apartment, all I wanted was to pass out in a darkened room - but no sooner had I achieved unconsciousness when I was awakened by the arrival of a new temperature controlled chorizo and beer storage unit (a fridge). Marvellous. Whooosh, Da-da! I had been transported into the body of an octagenarian ex-pat, complete with achingly slow, shuffling walk, inability to tackle stairs without risking a coronary, and need to sit down every few minutes and gasp. Add in a bit of dizziness/tippyness, headache (like a dehydration headache but without the dehydration), weakness, tendency to swoon on standing up, shooting pains in muscles and joints and an encyclopaedic knowledge of the price of every grocery item in every shop in the entire town. It took 4 days before I could re-inhabit my own 39 year old body, blumin 'eck.

Mind you, if there is ever a place where you want to be 39 going on 80, this town is it. It's like a scene from 'Cocoon' - an endless sea of leatherette pensioners of various European origins. A finer array of tartan shopping trolleys and huge beige knickers cannot be found outside of Bournemouth. At every turn there are benches and mobility scooter hire shops (my vanity, tight fistedness and ego were the only things stopping me from hiring one). Rather than feel embarrassed at my dawdling, erratic gait, I fit right in - my relative lack of wrinkles surely just a result of recent radical facelift? It all goes a step too far when Grandma (80, arthritic, bad hip, very slimline) offers me her arm for support. I about died.

Basking like a lizard on the one good weather day we had.

It was  mostly a no-drug week, so with just my 'neutraceuticals' for medicine, I needed to sleep - 14 hours a day, toddler style. It worked, and 4 days later I was feeling relatively ok, and up to the punishing schedule of sitting about in armchairs chatting about clogs and cheese pies. The weather was mostly appalling and dodgy Spanish electrics meant the flat was cold, so I didn't get much opportunity for vitamin D replenishment, but we had a nice time anyway.  The night before we came back I had ran out of my sleepy supplement (GABA) so had a rubbish night and thus had to play the 'excuse me I'm a cripple with a whingeing toddler' card when it came to boarding the plane and jumping queues.

A night in my own bed, GABA'd to the eyeballs, and I was ok again, only to come down with my scheduled 4 weekly flare a day later- grrrr.... I still had three days to go before I could take my scheduled antibiotics, so decided to be a bit nawty. I didn't want to miss the opportunity of blasting the feck out of some spiros, so I took two days of Metronidazole (flagyl) at 400mg twice daily- cue super-herx within 10 hrs of taking the first dose. Woo - hadn't had that on Tinidazole (an antibiotic from the same class). Bleargh, felt rotten, legs and other symptoms got worse, tinnitus came back, but only for two days, which was  a relief and nothing compared to the herxes some people get. (The Metronidazole was purloined from my partner- a prescription for a dental abscess that never happened - another example of dishing Abx out like smarties for everything except Lyme)

So what had I learned? Flagyl is good shit, respect for the dawdling grannies out there (now I understand why it takes a whole day to go the supermarket), and the importance of sleep.

So, I thought I'd whitter on about sleep and how to achieve it. Insomnia has to be one of the worst, most bloody annoying symptoms of tick-borne disease. For me at least, both my Babesia and my Lyme seem to be responsible for that 'wired but tired' feeling. I get insomnia when I have my 4 weekly Lyme flare and also inbetween for bouts of 3-4 nights when I also have night sweats and tumultuous dreams (Babesia I suspect). I have always prioritised sleep and have been known to go to bed at 7.30 pm. I often nap during the day when my daughter naps (absolutely dreading it when she drops her nap!). My partner is fantastic and gets up with the wee one when she wakes, often at 5.30 am, and lets me get a bit more sleep.

My UK LLMD's had never really been bothered by sleep, but my US LLMD is BIG on sleep, they feel that if you don't get good restorative sleep, you will never heal, and I tend to agree. There is a paper on sleep quality and Lyme - Greenberg et al. 1995, which says "Greater sleep latency, decreased sleep efficiency and a greater arousal index were noted in Lyme patients. The median length of uninterrupted occurrences of stage 2 and stage 4 non-rapid eye movement (NREM) sleep was less in Lyme patients". I have yet to meet a chronic Lymie who doesn't have sleep problems, I think it's one of the most common symptoms. Here is a WebMD article on all the ways poor sleep can make you sick.

So, how to get some shut-eye when your brain is fizzier than a diet coke on a galloping horse? I was offered Lorazepam (Ativan) which is a quite hardcore controlled drug, a benzodiazepene. I thought, 'no, I don't fancy looking Like Zammo' and so politely declined. I imagine if you had really really bad insomnia, and didn't have a toddler to run around after first thing in the morning, then it might be an attractive option.  I asked my LLMD for an alternative and she suggested GABA  and/or Melatonin. Specifically, 500mg-1g GABA at bedtime and or 8-10mg melatonin at bedtime. She said the GABA was best for getting you to sleep and the Melatonin was best for keeping you asleep. I have found 600mg GABA at bedtime works fine for me, unless it's a really bad night, when I'll pop another 400mg. It was about £30 for 2 months worth, from a UK company called Biovea, I didn't bother with the melatonin. I haven't found any hangover effect, but then I'm always a bleary-eyed half-human corpse in the mornings anyway. If you wanted to go the herbal route, I've been told Dr Stuarts Tranquility tea is good. I've taken Valerian and herbal Nytol in the past, to no effect, but they may work for you. If you're thinking you might need prescription drugs to help you sleep, why not ask your GP? They might be useless when it comes to actually treating Lyme, but they may be willing to help with some of the symptoms. They can only say no.....

Of course pain may also stop you from sleeping. I am taking 10mg nightly Amitriptyline  which was prescribed by my GP for my Lyme-associated neuropathic pain. It's a very commonly used drug, and I've found it to be very effective.  At higher doses it is used as an anti-depressant, but at low doses, it is used for neuropathic pain. It does take about 2 weeks to start working, so you have to be patient. I was also prescribed two neuropathic pain drugs by my US LLMD- Gabapentin (Neurontin) and Lamotrigine (Lamictal), but I decided not to take them as they are quite heavy duty and my pain wasn't that bad. I understand why they were prescribed - for lots of people (when they herx especially), the pain is awful, so they wanted to make sure I could ride out the herx, hence their suggestion of being on these drugs a couple of weeks prior to starting the new protocol. My herxes have never been that bad and pain has always been a minor feature of my Lyme. If you are a person who has really bad, painful herxes, it may be worth asking your LLMD or even GP for something similar.

As well as the physiological effects of Lyme and co-infections on sleep, there are the anxieties caused by battling with doctors, worrying about your family, worrying about the money, information overload from too much time on forums and blogs, and the general stress of having this illness. It's no wonder Lyme forums are so active at night! Stress busters others have followed are swimming, yoga, Tai Chi, and walking. Personally, I like to get outside whenever I can, and walk if I feel up to it. I find nature a wonderful stress buster. I also try to avoid doing anything Lymey or be on the computer in the late evening and sometimes have an epsom salts bath with lavender before bed. Sweet dreams everyone.

Money can't buy health..except it can.

I am doing well. Very well. I have money. Not a lot, but enough. The only reason I am not wheelchair bound, the only reason I have a healthy daughter, the only reason I don't have more extensive permanent heart and nerve damage, the only reason I can expect to recover, is that I can afford to pay for treatment. I am a working class girl who has worked her way into a more affluent life. I share my life with a wonderful man who earns enough to pay my medical bills. We live frugally, swopping nights out, new clothes, home improvements etc for antibiotics and consultation fees. My parents dipped into their retirement funds to get me well. I didn't grow up thinking, oooh, one day I'll be able to afford life-saving medicines when I get seriously ill... that's what the NHS is for. Sure, it's not perfect, but we live in a country where no-one is denied life-saving treatment because they cannot pay. Unless you have tick-borne disease, then you're absolutely screwed.

So, what does it cost? I had around 19 months of treatment from 2008-2010 when I first got ill. I spent around £13,000 then. I got nearly two months of doxycycline and 4 weeks IV ceftriaxone on the NHS, then they washed their hands of me. So, I went to the best place in the UK for Lyme and we spent all our savings and my parents money on getting me well. The clinic isn't some swish private hospital full of money grabbing doctors. It's a bit tatty and old and hidden on an industrial estate near Luton. It seems expensive but I don't think they don't make much money on the essentials, I couldn't buy antibiotics and equivalent quality supplements cheaper elsewhere - and I did look. Their consultation fees are standard rates for private doctors, nothing ridiculous. They are sticking their heads above the parapet and treating us when no-one else wants to risk it. For that, I am eternally grateful. They aren't perfect, but they are there. A lot of my money went on private nursing care - £8400 for 8 weeks of IV ceftriaxone at £175 a day, 6 days a week. The clinic didn't earn a penny out of that. They don't allow it now due to the risks of something going wrong, they have to watch their backs. Unfortunately, most of their doctors have now left and UK patients now have very limited choices.

Thanks to that treatment, I had 2.5 years of being completely well. We had a gorgeous daughter, who seems perfectly healthy, she is the best thing that has ever happened to us, and I am thankful for the opportunity of having her every day. I went back to work, got back on my bike, did some hillwalking, took up pottery, moved house to a nice suburb, enjoyed bringing up my daughter. When I relapsed June 2012, I knew it was Lyme immediately. I found myself on the kitchen floor, unable to walk, with a raging flu-like illness, thinking, this is it, it's back. Cue the usual rigmarole of being admitted to hospital and them telling me a load of old rubbish-"I'm not convinced by your legs" (she wrote "functional?" in my notes-that old chestnut). After toying with the idea of Mycoplasma, they settled on it being a cold virus. Laughable, except it wasn't actually funny.

I recognised the distinctive gait problem, migratory joint and muscle pains, twitching, sore throat, severe flu-like illness with soaking sweats and  bone-rattling chills, erratic blood pressure etc. I knew it was Lyme so I got my partner to make an appointment with the Luton clinic straight away. They confirmed it (as did a new doc on the Lyme block who we went to see for good measure)- classic relapsing neuroborreliosis. I got another positive Igenex western blot (IgG). This time, it was a different doc and they decided not to give IV and go the oral combination antibiotic route instead. After a couple of months, it was clear it was working, but I had a few nagging doubts about whether this was the best standard of care I could get, so I did some research into other options.

I looked into European clinics but had doubts about the most well known one and couldn't get enough information to make a decision about the others. It's a cloak and dagger world, most places don't advertise and they don't make public the details of their treatments. In the absence of solid clinical trials on what the best treatments are for chronic Lyme, I wanted to go where the greatest level of experience was.

I decided on America. Ringing around all the big name US LLMD's I had heard of, my options dwindled. Some where frighteningly expensive. Some didn't treat people outside their state. Some required very frequent in-person visits. Some weren't taking on patients at all or had waiting lists over a year long. I was left with one option, and I'm glad I took it. I don't think they'd suit everyone, but they suit me. They confirmed my suspicions that I probably had co-infections. They said probably Babesia and Bartonella and maybe others. They had extensive clinical experience, which meant they saw  things that less experienced docs might have missed. They didn't run loads of expensive tests which would probably be unreliable and ultimately pointless. I think it helped that I already had two positive Igenex IgG's for Borrelia burgdorferi, once recent one and one in 2008. I think it also probably helped that I had already been diagnosed by several other UK LLMD's, and had responded well to treatment. I also think being articulate and not incredibly ill or cognitively impaired was in my favour. I could express myself well - in person and during phone consults. I had written an extensive chronological history, which they found very helpful. Thankfully, they decided on oral rather than IV treatments for me. Apparently, only 25% of their patients need IV treatments- and they see a lot of very sick people. This meant we stood a chance of being able to afford it.

So what has it cost? Since the beginning of December 2012, when I had my first appointment in the US, I have spent £2040 on travel, accommodation and associated costs (for two people, one trip, 5 days), total  consultation fees have been £597 (one in person, one telephone follow-up), bloods were a mere £100- just CBC and metabolic panel, no Lyme tests as I'd already had recent Igenex, drugs and neutraceuticals have totalled £1457 so far- the mepron is expensive, but I've not yet used 2 bottles, at $662 a bottle. I anticipate the per monthly drug bill to decrease as I stop the mepron. Costs should reduce as I get better and I can go longer between appointments and even further when I can start doing 2 weeks on, 2 weeks off the drugs.

Total cost so far for US treatment? About £4230. All costs are approximate, I've bought supplements and drugs from so many different places, it's hard to remember them all. We've spent much less than I was fearing, and it's been worth it, I feel I'm on the right track with these guys and am optimistic that I will be symptom-free within a year (they haven't said that, I have said that to myself). For some people, recovery may be only partial, so some costs could be ongoing. I have a few tips for saving money:

•  If you have a tight or very fixed budget, tell your doctor that. Be upfront about it, ask them to give you only the essentials. Re testing, ask- "if I don't have this test, how will that affect my treatment?" If they are recommending lots of repeat or other testing, ask "is this really necessary?" Use your judgement, trust your instincts, do your research.
• Shop around for drugs and supplements. Drugs particularly can vary wildly in price. I used www.pharmacychecker.com  to find the best price for each drug in online pharmacies. I used my US prescription (which can't be used in British pharmacies), emailed them a copy and ordered over the phone (I couldn't order online they will be set up for US zip codes for online orders,  they have a special international phone number for international orders). You may get hold ups with customs and have to pay extra charges, which is a pain. I've had to wait around 1 month for delivery, but that was at Christmas when customs are super busy. You can't get controlled drugs online, so if you are going to go the temazepam route, get that in the states.
• If you want to get drugs whilst you are there, I had no problem bringing drugs back through as hand luggage. I had a doctors note from the clinic and pharmacy receipts. I went to a not for profit pharmacy, which I found on an online pharmacy checker. This was much cheaper than normal pharmacies and seemed completely legit- they were founded to serve AIDS/HIV patients. They weren't cheapest for Mepron though, so I had to order that online and wait.
• Keep your GP on side. Mine has been very helpful. She has set it up so I can have monthly blood counts, liver function, kidney and thyroid tests at the surgery. I then get hard copies of these and email them to the US. The GP has also managed to wangle me some of the testing that the US doc recommended- they've done a gallbladder ultrasound, and I've got a cardiac ultrasound booked in. They refused a thyroid scan, glalbladder CCK challenge and cardiac nuclear stress test, but you can't win em all....
• If you need help with pain or sleeping, ask your GP. Mine has prescribed me Amitriptyline 10mg nightly, which is for neuropathic pain. I didn't ask for anything for sleep, but have recently started taking GABA at 600mg a night, which was £30 for about 2 months worth, which seems to have helped.

I'm not writing this blog entry because I want to moan about how much it has all cost. Sure, I'd rather have spent the money on new carpets, a new boiler and other such fripperies, but I am one of the lucky ones. I caught this early, pursued aggressive treatment and could afford it. I could also tolerate the treatment because I hadn't had years of these bugs wreaking havoc on my body, untamed and undetected. I hear stories every day about people who are far less fortunate and it makes me incredibly angry. It shouldn't be like this, but it is. Bear in mind the figures above are ballpark only, everyone is different.

Vitamins, GABA, pulsed regime and crumpets.

Well, I've not blogged for a while because I've been busier than a bee on amphetamines. 

I've got to squeeze my blogging into my 12 hrs a week that I have childcare (evenings are spent largely comatose on the sofa with a brain comprised of tapioca, so not productive). It's a full time job being a Lymie, angry activist and general troublemaker. I'm not even that ill, I have absolutely no idea how those people who are really really sick manage it - especially those with kids - hats off to you! 

In my 12 hours of toddler-free time, I : blog, organize the UK Worldwide Lyme Protest, reply to emails and phone calls of other Lymies and relatives of patients, order and research supplements and drugs (and with a total of 16 supplements/neutraceuticals, 3 antibiotics and 2 anti-malarials, 1 pain drug to keep on top of, this is a lot of work!), count out my handfuls of tablets into my pill box weekly, swallow and slurp said medication with appropriate food at appropriate times,  fill in paperwork for my LLMD, go to GP and hospital appointments, decipher medical jargon and read latest developments in Lyme world, make official complaints about lying Neurologists (ha ha lady, you're not getting off that easily!), visit hairdressers and dentists, and sometimes I even get to rest or sleep ;-).

So, what's been gaaaan oon? Well, I had a great phone consultation with my lovely PA (Physicians Assistant) in the states. My routine bloods are fine apart from my pituitary is a bit naughty and is producing too much Thyroid Stimulating Hormone. My Vit D levels are mega low- 15 and they like them to be nearer 100. Googling seems to suggest 30-80 is a more realistic target to aim for, so I'm popping Vitamin D at 10,000 IUD a day with  1g Vit C for absorption. Living in northern Scotland is not exactly conducive to sunbathing, so that's not really an option and you're not getting me on a sunbed, I'm not from Liverpool ;-) Vitamin B12 is also quite low at 492 when it should be more like 1000. I have no idea what units she was talking about by the way, lets call them 'Bobs per Blob' for fun. I also have low ferret (Ferretin and Iron) levels - I'm always losing those little mustelids. So, some work to do there with diet and pills.

I'm still finding it really hard to get to sleep, even when exhausted I lay there for a good 2 hours waiting to drop off. I baulked at the idea of taking the suggested Lorazepam, so she suggested something called GABA and also melatonin. I look GABA up and find it's an amino acid which can be used to down-regulate nervous activity, so is used in anxiety, sleep and as it also increases lean muscle mass, is also abused by bodybuilders. It doesn't seem to be available in many UK internet drug shops. This is apparently either the work of big Pharma taking it off the shelves because it works too well and competes with their pharmaceuticals, or the work of the UK government banning it because of it's use by bodybuilders- depends who you talk to or believe. Sounds good, so I've ordered some.

We had a really excellent conversation about pregnancy and Lyme but this is such a big topic, I'll save it for another post.

Overall though, I'm doing really well on their pulsed regime and I've not had the expected disastrous jelly legs during the one week in three where I don't have any antimicrobials. Infact, the last 4 weekly flare co-coincided with a week off the drugs and I was fearing the worst. We had a long drive down south for a family do and I was kind of dreading it, but instead of the full fat Elvis on a dozen cheeseburgers legs, I had a rather pathetic Shakin' Stevens affair, despite a couple of beers at the do and gluten-tastic food all weekend. Shattered when I got back and could hardly walk for my gallbladder appointment today, but  that's not suprising given I had such a hectic time and had to fast for my scan. They said my gallbladder looks fine but is quite 'gravelly'- perhaps I can use it to mulch the garden....

So in the way that cancer patients visualise their tumours and give them pet names, I've been having Marvel comic style fantasies about what is happening within my body. I've called this particular comic strip "Good cop, badass cop".. Good cop is a gentle chap with a soft welsh accent, he comes out on the drugs holidays to coax my various parasites out of their hidey holes. He promises a lovely warm bath for them comprised of antibiotic-free blood and with a side order of vulnerable tissues and red blood cells. So out they trot, my spirochetes, plasmodia and Bart bacteria, they do a bit of line dancing before "SCHLUPP"  a white blood cell comes along and gobbles a few up. Then along comes baddass cop, a nasty Schwarzenegger type figure with his heavy artillery of Azithromycin, Ceftin, Tinidazole, Artesunate and his special chemical weapon- toxic sludge Mepron. "BLAM!" "KERPOW!" "KERAAANG!"... the casulalties lay strewn about whilst the rest scurry off back to their refuges of biofilms, blood-brain barriers and connective tissue and they curl up into their cysts. There they sit, hunkering down until good cop comes along again to tease them back out into the open. 

Well, with my limited understanding of immunology and overactive imagination, that's how I see it!

I've also been struggling with the whole gluten-sensitivity thing. So, my LLMD says 'most chronic Lyme patients we see have gluten sensitivity". I admitted to having had a couple of episodes where I'd had cramps and trots after eating bread, so they say "lo, you must hereby forgo your lovely comforting delicious toasted bakery products and eat foul, dry, gritty pale imitations instead". Being a bit emotionally attached to toasted teacakes, I am rather reluctant to give them up. I have eaten bread and related goodies loads of times and not noticed stomach issues, so the few times it has happened seems like a price worth paying. Then again, I saw a paper that said that gluten sensitivity can manifest  with such strange things as Ataxia:

http://www.ncbi.nlm.nih.gov/pubmed/20170845.

 This paper says:

Most patients who present with neurological manifestations of gluten sensitivity have no gastrointestinal symptoms.

The range of neurological manifestations of gluten sensitivity encountered in our specialist clinic over the past 15 years are listed in table 2. Cerebellar ataxia is one of the two most common neurological manifestations of gluten sensitivity. In a series of 500 patients with progressive ataxia evaluated over a period of 13 years in Sheffield, UK, 101 of 215 patients with idiopathic sporadic ataxia had serological evidence of gluten sensitivity.

 
So just because I don't bloat like a rotten pig when I eat crumpets, doesn't mean it's not having an effect on me..mmmm.

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