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.





 

Confessions of a bad Lymey

I bet, like most facets of life, there are things that Lyme people just don't admit to.So here goes:

I'm a bad Lymey. I eat sugar (in small amounts). If I fancy a biscuit, I have one (but not every day). If it's custard creams or pink panther wafers (with added Vitamins A, D and E, so practically a health food!), I scoff for Scotland. Part of the reason I shop at Lidl is avoidance of sweet supermarket temptation (terrible packaging, no finest lemon tarts). Now the buggers are putting in an instore bakery. Candida-tastic. I hear from the US that sugar 'feeds Borrelia'. I can't find this in the literature (and I haven't looked very hard) so I'm ignoring it and feeding my thrush instead.

I also have a wee drinkypoos on a Saturday night. I know alcohol and Lyme do not mix. Lyme hangovers are like being trapped in a lift with death metal mood music. John Prescott is trapped with you and he's farting and punching you in the face whilst forcing you to eat used cat litter.....So I only have one glass of wine, but it makes me feel normal (and incredibly pissed for an hour).

I sometimes forget to take my tablets. I'm rubbish at taking them on time. I bought the biggest 7 day pill organiser I could find and then taped two of them together so I could fit all my tablets for the week in it. It takes an hour to fill it up. It's the size of Wales.

I went to a witch doctor. She pretty much had chickens feet and dried newts round her neck. She called herself an 'Energy Practitioner'. It was really weird, but I was so incredibly desperate to be well again, I did all the mad stuff she 'prescribed'. I even spent loads of money on a stupid widget that I had to wear at all times. It was supposed to neutralise bad electromagnetism from wireless gadgets and pylons. She was appalled that we had a cordless phone. At the time, I thought it was probably a bit mental. Looking back, I think it was very mental. The Klinghardty potions I took might have had an effect though- I did get 2.5 years of total remission (on the other hand, the antibiotics may have had something to do with it). I like to think I have an open mind and hey, we only understand a fraction of how the world works anyway, so who knows....

I worry that I have given it to my daughter and partner but am in denial about it. I was asymptomatic when I was pregnant but had only been free of symptoms for a few months and wasn't on antibiotics. She seems healthy, so I'm trying not to think about it. My long-suffering partner is always tired, he gets a lot of headaches. I don't want to be one of those families where everyone has it. 

Our carpets are gross. They are only held together by the stains. We can't afford to replace them now we've got to pay for treatment and neither of us can be bothered to shampoo them.

We moved to a house in a lovely street where everyone keeps their front gardens immaculate. Except us. I'm hoping to discover a new species of primate in it at some stage.

When I first got ill, I went on Eurolyme all the time and looked at You Tube videos of people with Lyme. Bad Idea. Got a bit obsessed and depressed about how F**ing Sh**ty it all was. I know much more now so don't do this anymore. Having a toddler who refuses to let you use the computer for more than 5 milliseconds at a time helps.

I'm taking a shed load of supplements and I don't have a clue why for most of them. The Lyme doc didn't have time to explain and I didn't the brain power to take it in anyway. I don't think there's much hard evidence for a lot of this stuff, but I want to get better, so I'm not questioning it for now. I know they make my wee smell of cabbage. It's not as impressive as Rifampicin pee though - that's the colour of Irn Bru!

.. so now you know! ;-)

Constructive things to help yourself.

What a fab couple of weeks! I'm still on my delicious antibiotic/supplement cocktail (Spirochete Sunrise anyone?)  (Azithromycin/Amoxycillin and Artesunate 4 days a week and Tinidazole/Artesunate 3 days a week). Of course my recovery is just due to placebo/occult magic/psychosomatic/me just snapping out of it- or might it be sustained bactericidal action of via the wonders of modern medicine??? ;-). I know what I think....

I've been on an 8 mile cycle . There were no hills, I went fairly slowly and my legs were replaced by a pair of Jellyfish for a day or so afterwards, but hey- I did it! I've had energy to tidy the house and do a bit of gardening and even do crafty things in the evenings rather than pass out on the sofa. My sleeping has been mostly fine - what a relief that is- the 'tired but wired' Lyme insomnia is so frustrating! The headaches are gone, the dizziness is nearly gone, the twitching nearly gone. Most days I'm walking normally or nearly normal. Some days I don't feel ill at all, apart from being tired and a bit weak. Big smiley faces all round :-))))))

So, I thought I'd jot down some things I think are quite useful for the average Lymey to do:

1) Keep a symptom diary. 

Lyme is so mhhhasively up and down, so variable from day to day that sometimes it's hard to see the patterns of things. It's also helpful to write down when you had doctors visits and tests. I like to give a numerical score to my legs 1 being normal gait and strength, 5 being can hardly walk or cannot walk. That way, I can draw a graph of  leg severity which (as you can see below) shows an average 28 day periodicity- useful as that is characteristic of Lyme. Don't be scared to write down wierdy things that you are not sure if they are Lyme - quite often these symptoms are transitory and quite odd, but this seems to be something we see in Lyme and tick-borne disease- shifting fluctuating symptoms. I've had urinary incontinence just for 1 day, bladder pains just for an hour or so, dental pain that came and went but was always in the same few teeth (but the dentist said the teeth were fine), randomly occurring tendency to collapse when standing from sitting, pain in muscles and joints that shifts location from day to day, hour to hour, transitory numb patches on my shins and one thigh, transitory (up to 20 min spells but usually few mins) muscle twitching in thighs, upper arms, buttock, eye, tippy spells that can last just for a few seconds. On their own these symptoms can be explained away or ignored, but when they are added to the other pieces of the jigsaw, they can be suggestive of Lyme.

2) Request your medical notes.

You are entitled to see all your medical notes. They have to let you see them unless (text below taken from Department of Health guidance)

Situations where health information may be limited or denied
20. The Data Protection (Subject Access Modification) (Health) Order 2000 enables the
data controller to limit or deny access to an individual’s health record where:
• the information released may cause serious harm to the physical or mental
health or condition of the patient, or any other person, or
• access would disclose information relating to or provided by a third person who
has not consented to that disclosure unless:
- The third party is a health professional who has compiled or contributed to the
health records or who has been involved in the care of the patient.
- The third party, who is not a health professional, gives their consent to the
disclosure of that information.
- It is reasonable to disclose without that third party’s consent.is they think it would harm you or you might harm others by seeing them

You may have to pay a small admin fee to see them/get photocopies. The reason I think this is important is that I have found that details are important with Lyme and the details of tests, suspected diagnoses and observations often get overlooked. You may also want to see what has been written in letters about you- this can be quite revealing. Note- they do use code/technical words and terms. 'Functional' means it's in your head, essentially.  You may have notes that are wrong- for instance some doctor had written down that during my last acute phase I had a runny nose and cough- this is wrong, I had neither of these things and I pointed this out to the Infection Consultant overseeing my case. I have no idea why the doctor wrote this, he was foreign so there may have been language difficulties. This may have partly been why the consultant was happy to put this acute phase down to a 'Rhinovirus'. (which most people would go,' ooooh, a Rhinovirus, sounds nasty' - except the Rhinovirus is the causative agent of the common cold).

You can also ask for any consultants etc to copy you in on letters that they write to your GP. Saves time in requesting copies later (which can take several weeks). They might not like this, but they should comply with your request. 

3) Write down the things that suggest you might have tick-borne disease/Lyme.

I did this and keep it updated. I find having the bits and pieces in one document helpful. I have private tests and letters from private docs which are not in my NHS notes so I put these in the 'evidence' Doc which I keep updated. I guess there are pros and cons to doing this- the NHS may think you are being a bit obsessive and really 'want' to have Lyme. They might get uppity at your suggestion that you might have Lyme etc- Some doctors don't like being 'told' things like this. This is what I have written:

Evidence I have Chronic/relapsing Neuroborreliosis- Dr XXXXXXX 18/09/12.

I ask that this document be included in my notes.

1.       Positive IgeneX IgG western blot for Borrelia burgdorferi with bands indicating ongoing chronic infection. Appearance of new band (58kDa), not there in 2008 results, and  band 31kDa and 34kDa indicative of chronic Borrelia burgdorferi infection and Neuroborreliosis respectively. IgeneX are a specialist laboratory for tick-borne disease. They are certified by Medicare and Medicaid in the US, their results are accepted by many state medical boards and they do extensive validation and quality assurance of their tests.

2.       Two private Lyme Specialists, Dr XXX and Dr XXX, have diagnosed me clinically with Neuroborreliosis.

3.       Previous laboratory-confirmed Neuroborreliosis history which resolved with extended (19 month long) antibiotic  treatment.

4.       History and symptoms consistent with Neuroborreliosis:

·        21/6/12 Sudden Flu-like illness with Shivers, fever, transient shooting muscle pains, transient shifting arthralgias, headache, slightly sore throat, swollen glands, weakened legs resulting in gait disturbance and severe difficulty walking, could not walk more than 20m (worse on left, ok up and down stairs, very poor on the flat, very very poor on down slopes, slightly better on up slopes), CRP 60, then 88,  fluctuating blood pressure (dropped to 78/44, low on few occasions, not dehydrated – suggests autonomic nervous system dysfunction). Symptoms almost resolved on Levofloxacin, some legs weakness remained- response to ABX

·        1/7/12 – 4/7/12 2 days after finishing a week long course of Levofloxacin, return of poor gait  and legs weakness, especially on left, very bad fatigue and stamina, swollen glands, nausea, temp 37.7, infrequent shooting pains in muscles of legs and arms. Dizziness ‘tippy’ feeling, weakened arms, headache.

·        5/7/12 Palpitations (especially on exertion but also at night) in addition to above symptoms

·        6/7/12 had to use wheelchair to travel more than a few steps, legs very bad.

·        8/7/12 48 hours after starting ABX Amoxicillin (2g/day) Herxheimer reaction- response to ABX, ‘ill’ feeling, v. weak overall, could not hold a pint glass of water in one hand, too heavy. Fatigued, glands swollen, shooting pains in legs, headache, legs especially left weakened and gait very poor. Especially in afternoons/evenings.  Dizzy/tippy spells, faint spells, palpitations, nausea, needing afternoon nap but difficulty sleeping at night, transitory arthralgias in knees, elbows and hands.  Gradually these symptoms improved after about 6 days, remained in Amoxicillin/Tinidazole pulsed therapy – response to ABX

·        19/7/12 – 22/7/12 Symptom flare exactly 4 weeks after onset of initial febrile illness – reflecting 4-weekly flare cycle that us often observed in Lyme patients. New symptoms – worsening ataxia, hand tremor (transitory), bladder pain (transitory) and increased palpitations, twitching muscles in thighs, legs very bad, constant headache, ‘wooly’ feeling in head, suspected mild cognitive problems, positive Rombergs sign, have to use crutches.

·        Some improvement in symptoms upon starting Azithromycin and increasing dose of Amoxycillin and Artesunate- Flare was 5 days later than expected and less severe than expected- response to ABX

·        Continued gradual improvement on combination antibiotics, with increasingly good periods of normal gait and fewer symptoms. Symptoms fluctuate on a 4-weekly basis (see graph of legs). This cycle is a characteristic pattern seen in Chronic Lyme- response to ABX

5.       Three abnormal ECG’s- GP has requested ECHO and cardiology referral. ECG’s showing conduction abnormality- right ventricular conduction delay. Cardiac conduction problems are a well-known manifestation of Lyme disease. I have spells of faintness, breathlessness and palpitations, usually on exertion.

6.       Reduced reflexes in left side lower limbs (fluctuates, sometimes obvious, sometimes not, worse when legs are worse. Observed by GP and Dr xxx)

7.       Ataxia – cannot touch finger to nose on left hand side- sometimes there, sometimes not, happens when legs and other symptoms are bad.

8.       Positive Romberg’s Sign- again, variable, happens when other symptoms are bad.

9.       Raised CRP during febrile illness (60 then 88)

10.   Other laboratory findings:

·         During initial febrile illness, white blood count normal overall, but Eosinophils and Lymphocytes both low on two occasions (22/6/12, Eos- 0.02 (range 0.1-0.5) and Lymph-0.7 (range 1.5-4.0). 23/6/12, Eos 0.04 (range 0.1-0.5) and Lymph- 1.4 (range 1.5-4.0). Eosinophils still low on 24/06/12 at 0.05, but Lymphocytes just back within normal range. B. burgdorferi targets and kills B and T Lymphocytes and Lymphocytopenia is sometimes associated with B.burgdorferi infection. Eosinopenia may be indicative of Babesia infection.

·         Epstein Barr Virus EDNA IgG antibodies and EBV early Ag IgG antibodies reflect latent infection

·         Echo Virus N and P mix CFT consistent with recent infection

·         Raised levels of Aspergillus Niger IgG and Aspergillus Fumigatus IgG

·         Rhinovirus PCR from throat swabs

11.   Thyroid Peroxidase antibodies and Thyroid microsomal antibodies. Suggestive of start of Hashimotos Thyroiditus. Auto-immune destruction of the thyroid is often associated with Chronic Lyme infection (although in my case, this could be a pre-existing condition- family history).

12.   Fluctuating BP in initial febrile illness may reflect disturbance of autonomic nervous system, often associated with chronic borreliosis. I also have increased tendency to collapse and almost faint when rising from sitting to standing. This has happened with increased frequency since this relapse. Example- when sitting BP 106/54 pulse 76. Upon standing, BP 99/68, pulse 107. Tendency towards POTS (But not severe enough to be called POTS).

 

4) Write to your MP.

I don't know how often this happens, but I know one patient to was being denied treatment via her GP. She wrote to her MP and someone had a word with someone and ta-da! she was suddenly being prescribed antibiotics by her GP (with a private diagnosis, tests and recommendations to back it up). So it can help, worth a try, and how are things ever going to change if MP's aren't aware of what is going on in their consitiencies? This is what I wrote to my MSP (Member of Scottish Parliament). I have not had a reply yet, but will chase him up.

               

My address phone number and email here

MSP Name and Address here

Dear Mr XXXX MSP,

I am writing to you to ask for your assistance in obtaining appropriate treatment for a debilitating disease that I am suffering. My condition is treatable but I receiving no appropriate treatment from the NHS and I do not know where else to turn.

So you can understand my current situation, this is just some background on me and how I got this disease:

 I am on a career break to be a full time mother at the moment, but I have worked for many years as an Ecologist, most recently, working for xxxx..

 I contracted Lyme disease in May 2008 from a single tick bite (It is caused by a bacteria which is transmitted by ticks) on the Isle of Rhum. My initial symptoms were typical of Lyme - a severe flu-type illness without a runny nose or cough. I had a fever, sweats, severe headache, stiff neck, bright lights hurt my eyes, stomach ache, swollen glands, muscle pains, sore knees and after a day or so, my legs began to weaken. My GP referred me to the xxx Infection Unit the next day. By the time I arrived at the hospital I could no longer walk and was admitted immediately. I told them of my recent tick bite and suspicions of Lyme disease and was given 200mg a day Doxycycline. I have since been told by an NHS consultant  with a special interest in Lyme Disease (who prefers to remain nameless), that this was an inadequate treatment for what was quite probably Lyme disease of the Central Nervous System (Neuroborreliosis). This consultant said that had I been given the appropriate treatment at this stage (IV Ceftriaxone), I would have probably have been fully cured within a month, and would not still have Lyme disease today. In fact, recent studies show that low doses of Doxycycline could make the disease harder to treat in the long term, as it encourages the bacteria to become ‘cystic’ and these Cystic forms are very difficult to treat with antibiotics.

I was discharged from the hospital still quite ill, with 21 days of low dose Doxycycline. I was now able to walk, but had to hold onto furniture to get around and could not work. I was very weak and continued to have the headaches, now accompanied by dizziness, nausea, muscle pains, dental pain, joint pain, sleep disruption, unremitting fatigue. I realised that I may still have Lyme disease and went back to the hospital to ask for an increased dose of Doxycycline and I was given an increased dose for a further 30 days. This had some effect but before the 30 days was up, I relapsed. This cyclical pattern (worse every 4 weeks) is characteristic of Lyme disease. The hospital re-admitted me, performed various tests and discharged me with no further treatment. They gave me a diagnosis of ‘post viral fatigue’ or a ‘software problem’ and I was referred to a psychiatrist. The psychiatrist said I had no mental health issues. Prior to this I had been very fit and healthy - munro-bagging, rock climbing, mountain biking and doing lots of field work. Now I could barely walk round Tesco’s and some days I had to crawl around my house. I got sicker without treatment. I found it difficult to think clearly, could not converse properly and forgot things such as my PIN number and names for everyday items. Everyday tasks such as typing or reading became very difficult. I had poor spatial awareness and knocked things off surfaces.

I realised I was very ill and so went to see a Lyme specialist in xxx at the xxx Clinic which had considerable expertise in dealing with Lyme Disease. They diagnosed me immediately with Neurological Lyme Disease and they requested that the hospital give me 3 months IV Ceftriaxone (which penetrates the blood brain barrier so is more appropriate for central nervous system Lyme). The consultant there (Dr xxx), agreed to give me one  month of IV Ceftriaxone and I had to pay privately for the further 2 months, at considerable cost. The hospitalwere not willing to give me further treatment (despite by this time  having a positive private blood test for Lyme disease). Though I tested negative for Lyme by three standard NHS tests, there is much debate about the reliability of these tests. Having been warned by Dr xxx not to treat me, my GP was unable to help me either. Thus I was forced to get treatment via the xxx clinic. After 19 months of treatment with various antibiotics, I was finally well again. I had spent around £13K on private treatment, much of it donated by my parents and partner. My partner and I were finally able to start a family and we had a healthy baby in December 2010. I began to work with the charity Lyme Disease Action, raising awareness of the condition through giving talks to walking/outdoor groups, and most recently to medics at the hospital. I also helped other patients with their Lyme.

Recently I had an unexpected relapse of Lyme disease. This can sometimes happen as the bacteria can lie dormant for years. This was quite out of the blue as I had been completely well for 2.5 years.

Again, two private Lyme disease specialists have diagnosed me with Neuroborreliosis (Neurological Lyme Disease), and again, I have a positive private blood test. I have been to the hospital twice in the last few weeks (because of this relapse) as an inpatient and an outpatient and I am again been denied appropriate treatment for my Neurological Lyme disease. I was offered a short course of low dose Doxycycline, which I declined as it is likely to be ineffective and could in fact make the situation worse by creating cystic forms which are refractory to further treatment.

The doctors at the hospital do not believe in Chronic Lyme Disease. They maintain that Lyme disease will have been eradicated by short course of antibiotics and they say that any further illness called ‘Post Lyme Syndrome’ and is an autoimmune disease or historical damage. They maintain that further antibiotics will be ineffective.

Having been forced to extensively research Lyme Disease I know that there is overwhelming evidence that Lyme can and does persist through even quite long courses of antibiotics. Persistence of Lyme despite antibiotic treatment has been demonstrated in at least 77 peer-reviewed scientific studies. In contrast there really is no evidence for this theory of ‘post-Lyme syndrome’. There are several papers showing that long term antibiotics can help, and anecdotally, it seems to be the case that chronic Lyme patients who do manage to access long term antibiotics recover much or most of their health. I was told by my original xxx Lyme doctor that had I not been treated with long term antibiotics, I would most probably have ended up in a wheelchair and chronically ill. Again, I am being forced to pay for expensive private treatment at the xxx clinic, and having to endure tiring trips to southern England for consultations.

I have a toddler to look after and we would like to have another child (Lyme can be transmitted to babies in the womb and so I cannot get pregnant whilst I have Lyme- Dr xxx at the hospital was surprisingly unaware of this in-utero transmission). I am struggling to walk most days and have had trouble thinking clearly. I sometimes have to use crutches and occasionally a wheelchair.

I would like Dr xxx to work with the Lyme specialists at the xxx and provide appropriate long term treatment for me via the NHS. The antibiotics themselves are not prohibitively expensive (most of my costs were for a private IV nurse and consultations), so it should not be a decision influenced by cost. Dr xxx would not be contravening NHS or UK guidelines on Lyme disease because there are no such guidelines. There are several sets of guidelines written for the USA, Europe and Germany. It is a grey area as to which guidelines are most appropriate for the NHS to use, and it is really at the discretion of the doctors as to what guidelines they follow.

There is an NHS online resource  available to assist doctors with Lyme, called Clinical Knowledge summaries :

Clinical Knowledge summaries (CKS) says of diagnosis: Consider the possibility of late Lyme disease in people with a history of a tick bite or possible exposure to ticks when they present with any of the following (including:) Neurological disease - Late neurological Lyme disease can present as a slowly progressive central nervous system disorder (encephalomyelitis) or peripheral neuropathy.

Regarding treatment, CKS says: For anything but treatment for early stage treatment of the Lyme rash, advice should be sought from a specialist. It goes on to say that “There is current evidence to support both IDSA (the guidelines the hospital seem to use) and ILADS (the guidelines private Lyme specialists use, amongst others) schools of thought and it may be some time until one set of guidelines becomes generally more accepted than the other.”

As I have European, Neurological Lyme Disease,  the European Federation of Neurological Societies (EFNS) Guidelines would be appropriate in my case. These guidelines acknowledge there are many unknowns with regard Neurological Lyme disease, the EFNS:

·         Point out the lack of European treatment studies and controlled trials on treatment length.

·         Say most recommendations are based on opinion because of the lack of evidence.

·         Recognise that studies show significant treatment failure rates, but make no recommendation as to further treatment.

So, reputable sources of information which the hospital should be using, do not deny the possibility of chronic, relapsing Lyme which may be treatable with longer courses of antibiotics.

I am not alone in finding myself in this situation. I know of  9 other Lyme sufferers in this area who have been misdiagnosed, denied appropriate treatment and abandoned to suffer debilitating chronic Lyme disease by the hospital. There are likely to be many more. These people are now unable to work or on frequent sick leave because of their Lyme. Some are able to afford treatment privately, some are not getting any treatment and some are being treated by their GP ‘under the radar’. This is a disgusting state of affairs, this is a serious, treatable disease, and if caught early is curable. If misdiagnosed or undertreated, patients can go on to endure decades of ill health.

 I have sympathy for the NHS doctors, Lyme disease is not that common (75 cases in this area last year, probably an underestimate by a factor of 10), it is difficult to diagnose and the testing is unreliable. However, their refusal to consider the views of private specialists (unfortunately there are no NHS specialists in Lyme), and their blind refusal to believe in the possibility of chronic or relapsing Lyme, is unacceptable.

If you would like to discuss these matters further, I have included my contact details, above. I would be very appreciative if you could assist me in any way at all with this.

Yours Sincerely,

Quite a lot of dense text and the MP letter is a bit long, I know, but it's quite hard to cut these things down sometimes. Anyway, these are things I've done, I have found them helpful perhaps you will too. They haven't gotten me NHS treatment, but I feel better for having done them, and they might help some people get NHS diagnoses and treatment, you never know. With the blancmange brain and general knackeredness I found it difficult to do these things when I first got Lyme. This is why I've included my detailed diary, etc as it might be easier for someone to do these things if they have a sort of template to follow. The diary has been the most useful thing, there's no way you'll remember everything unless you write it down and the private doctors found it really useful.