Monday, 10 September 2012

Introducting Lymey Wifey

Hello World,

Just thought I might start a wee Lyme blog to share my accumulated Lyme Disease know-how, rant a bit, document my progress on (and hopefully, off) treatment, and put out some stuff which might help people in their battles with the medical establishment.

So, who is this Lymey Wifey? Well, I'm not really a wifey (I have a fantastic partner, John, but ssshhh- we're not married) and a gorgeous 20 month old daughter. Wifey is just what they call women in this part of Scotland, a rather endearing term, I think you'll agree. John is what they call a Mannie. I do love Aberdeen, we're not Scottish (Sassenachs), but I find myself increasingly jibbering in Doric or Scots.

So, I'm an Ecologist/Entomologist/Evolutionary biologist by training, spent a number of years working in grotty, mouldy basements full of cages of insects and some really cool places full of midges and mosquitoes. I have a PhD on the sex life of the dung fly - always a conversation stopper at parties. I have always been a hillwalker/rock climber/mountain biker, and so has John, which is how we met. Currently on a career break to be a full time mum, which is fab.

I got Lyme disease in  May 2008. One fateful, beautiful day on the lovely Isle of Rhum (West coast of Scotland) and my life was really changed forever. Here is my timeline of how I got well again:

http://www.lymediseaseaction.org.uk/wp-content/uploads/2011/08/Story-Nicola-Seal.pdf 

I got treatment (cue 19 months of LOTS of different antibiotics, a lot of money and hassle, lots of disappointments and eventual remission). 2.5 yrs of being completely well, absolutely no sign of the Lyme. We had our beautiful daughter, moved house, I gave up work and John  got a new job. Life was really very good, then BAM! The Lyme came back, totally out of the blue. Gutted, really didn't want to believe it, but there it was- definitely, definitely Lyme- exactly the same as last time. (Probably triggered by a minor virus from my daughter)

The curious (and quite unusual) thing about my Lyme is that it's primary symptom is an abnormal gait. I walk like a Zombie C3PO! Myopathic gait they called it. My knees turn in, my thighs are very weak, my feet have poor control and plonk down noisily and sometimes one foot drags a bit and catches on the floor. Occasionally I can't walk at all and have to crawl. It's very variable- some days I can walk normally (albeit with weak legs) and some days I have to use crutches (which are wildly impractical with a toddler). I have had to use a wheelchair at airports. I'm always better in the morning, my batteries are really cheap value ones and run down very quickly. Often the first few steps are fine, then the weakness kicks in and I go flopsie daisy again. I used to stomp up mountains regularly, so this flolloping about like a malnourished kitten is a bit hard to get used to. I can do stairs normally (well, slowly and with much puffing and panting at the mo), but the flat is bad, down slopes worse and up slopes better. Weird.



Anyway, the fortunate (ish) thing is, this gait problem means it's really easy to recognise when I've got the Lyme, it's so characteristic. I grade my legs 1-5. 1 is normal gait, 5 is hardly able to walk or cannot walk. The day I got the Lyme back, it was a 3, then rapid (few hours) progression to a 5, with me slumped on the kitchen floor quite scared. I felt awful, the flu- like symptoms were back (no runny nose, or cough, but fever, chills with spasms of huge shivering, headache, swollen glands, pain in muscles and joints, stomach pain). Off to hospital, few nights there, didn't sleep much, felt rotten, sore throat, swollen glands, awful night sweats, fever, blood pressure kept dipping for no reason, (78/44 at one point), chills, headache, weakness, tippy/dizzy feeling, nausea, nasty pains in joints and muscles, dental pain in a couple of teeth (had gone to dentist few weeks earlier and been given all clear), twitching muscles. I could only walk short distances if I held onto furniture, and then very slowly. I had to have a wheelchair in the shower as I couldn't stand for long. They gave me a weeks worth of Levofloxacin (they suspected Mycoplasma), I got a lot better and I was discharged. They pretty much refused to even consider the possibility that it could be a Lyme relapse. I knew that this was what it was, as the symptoms were exactly the same as last time- and the gait was so specific and exactly the same. Of course two days after the Levofloxacin ran out, I was back walking like zombie C3PO and feeling like poo again.

Sometime after, I got a rather amusing letter telling me they had isolated Rhinovirus (the virus that causes common colds) from my nose, and therefore it was just a Rhinovirus.Wow, that's a pretty nasty cold.

Managed to get appointment at private clinic nr Luton that I'd been to before. Also went to Yorkshire to see a GP who I'd heard treated Lyme. Diagnosed clinically with classic neuroborreliosis by both of them, with letters to my GP. The Yorkshire Doc observed reduced reflexes on my left side and the Luton Doc observed slight ataxia. Both could see I was having real difficulty walking, both thought this was the Lyme.

The Doc at the Luton clinic started me on a combo of Amoxicillin (2g a day), Azithromycin (2 g a day) for 4 days a week and Tinidazole (1 g a day) for 3 days a week. They also threw in some Artesunate at 40 mg a day, which is a malaria treatment that can apparently kill Babesia (in case I had that- it's a co-infection but it's quite hard to diagnose) and also Borrelia (the Lyme bacteria). Oh, quite  few supplements as well.




My first monthly flare-up was bad, legs were rubbish and I needed crutches. I was at the Lyme Disease Action conference in Carlisle, which was great, but not great timing. Then I got the dreaded brain fog- awful- couldn't think straight and took my daughter for a walk with no shoes on and put her milk in the microwave instead of the fridge. 

Did a couple of neurological tests on myself- Rhombergs where you stand with feet together and close eyes, I just fell over immediately. You are supposed to be able to stay upright. Also finger to nose touching, I couldn't do it on one side- just the same as last time. I didn't know where my nose was with my eyes closed.  U-oh, I thought, it's in my brain again. 

So off to the hospital again as I thought, surely, they'll be able to see this, measure, this and will take notice. Spend 2 hrs fruitlessly arguing with Dr Dickhead who just kept saying 'I'm not going to have a debate with you' and 'we don't believe in chronic Lyme'. Showed him my symptom diary detailing my good response to antibiotics, showed him lots of papers and abstracts demonstrating persistence of the Lyme bacteria despite antibiotics, showed him papers which showed his tests (which were all negative) were rubbish (53% sensitivity! utter pants). He did a neuro exam where he did the Rhomberg test wrong (my feet were about 6 inches apart) and ignored me not being able to touch my nose. Shutters were down, blinkers were on, no-one was at home. Pointless.

Got a western blot test done, via the Luton clinic- at Igenex laboratories in the states. It was IgG positive for Lyme (Western Blot, bands 31, 34, 41, 58). The IgM was negative and the IFA (Immunoflorescence Assay) was equivocal. For the uninitiated, this means that I had antibodies to Lyme bacteria, and those antibodies were the type seen in chronic infections. So I had been exposed to the Lyme bacteria, and had moderate levels of these IgG antibodies. It appeared to be an ongoing infection since I had a similar result back in 2008, but this time had an extra band- band 58.

It was a pity I was IgM negative, as the IgM antibodies are the type seen in acute infections, but apparently, for some reason, many Lyme patients never get positive results for IgM, and IgM can be quite transitory and fluctuate over time, sometimes re-appearing later in the the infection. As usual, Lyme does not play by the rules that other infections play by.

I couldn't take the Azithromycin for a month though, as I had bad palpitations the day after I'd seen the Luton Doc, so she said to not take it until my palpitations had settled for a month or she had seen an EGC. Got the ECG done at my local GP, and am awaiting cardiology appointment as it shows conduction problems. This is sometimes seen with Lyme and I am expecting it to resolve with treatment. I do get faint and breathless on exertion (and not even much exertion, climbing the stairs will do it). I showed this ECG to the Infection Doc at my local hospital but it was dismissed  as 'common in young thin women' - I'm 38, 5'5", weigh 10 st, so not that young or thin. They just have blinkers on and a total refusal to even consider chronic Lyme, so the suggestion that it could be connected to Lyme was not well received.

The Azithromycin, when I eventually started it, seemed to be the key- really helping (although there are obviously good and bad days). After 3 months treatment on this combo (and upping the amoxy to 3 g a day and artesunate to 80mg a day) I feel much better- the headaches have gone, tippy/dizziness much less, I sleep well 3/4 of the time, the random pains have lessened and I'm getting some quite good days with the legs. It still goes in 4-5 week cycles though, with 2-3 weeks quite bad, then 1-2 weeks quite good then a sudden deterioration. This is a pattern often seen with Lyme (no-one really knows why). 

Got a bit of a rash (slightly itchy, some were a bit like grazes) when I forgot my Azithromycin for a week. I've seen pictures of people having similar atypical rashes when on treatment:

Side of body

I scratched this one a bit

Shoulder


side of body

I've made an appointment in the US to see an LLMD there as my Luton Lyme Doc is unfortunately off sick, and they don't know when she can come back to work. So, off stateside in December- I'll let you know how I get on.

So, that's my Lyme mark II story. I aim to turn this blog into a website, the idea of that is so I can put up helpful things for other Lymies. I'll be writing summaries of various Lyme topics (in layman's terms but listing the scientific references), will put up templates for writing to your MP, symptom diaries, how to put things in writing for your medical records, ways to argue your case, a copy of my Lyme presentation, and my top tips for getting treatment and getting better. I'm not a Doctor, so any advice I give should be read with that understanding. I'm just a reasonably knowledgeable scientist patient.






8 comments:

  1. Thank you for doing this, Nicola. I'm an American expat living up near Inverness. Had a positive borrelia result in June on my first Lyme test. Too long a story, but i reckon i've had it for 10 yrs, with the usual laundry list of symptoms. I'm finally seeing Infectious Disease consultant, Dr Grant Franklin, next week at Raigmore Hospital which i understand is a UK testing centre for Lyme. I really look forward to following your blog. :) Liz

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    1. er Good luck with your consultation go well prepared with supporting information I hear this guy is slightly more receptive than most but still a long long way before being Lyme literate. However how you deal with him may have consequences good ones hopefully that send out ripples for the benefit of so many other patients.
      My GP has been very supportive here in Surrey just as well as there have been several other cases locally at least 7 that I have spoken with so guessing many more. Also other surgeries in my locality finding patients not just with early stage Lyme but also chronic Lyme. Bonny mess when education comes from grass roots. I watched the video of And the Band Played On, the history about the discovery of HIV and the AIDS epidemic - so paralleled what the Lyme community is having to deal with even to the problem over the blood banks with.This is the link if anyone is interested https://www.youtube.com/watch?v=DIHy4_31Db4&feature=player_embedded#at=80 Interestingly Prof Luc Montagnier the co discoverer of HIV and Nobel prize winner is now involved with supporting ILADS view on Chronic Lyme Disease and other stealth infections which he believes are the underlying cause of many chronic illnesses.

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  2. Really well done putting ths together Nic. I seem to keep find myself telling your story to various folk, outdoor enthusiasts & others, but the details are always more than I can get across. Sorry not seen you for a while but will get over there sometime. You keep seeming to be away when I think I can detour there from Kingswells! Take care. Mike x.

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  3. So good of you to share your story Nicola I look forward to posting about it on my blog http://lookingatlyme.blogspot.co.uk/ It gives a very different story to my own but helps to show how many different symptoms patients can experience with Lyme disease. here's hoping your improvements are soon and steady.

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  4. Hello Nicola,

    I admire your determination not to meekly and silently accept that "professionals" can abuse their power and authority to thoughtlessly "sh*t on you", as they are sometimes unfortunately - in my experience and opinion too - prone to do.

    Your strategy of using the internet to shine a light in a dark place looks like a good one to me. Fingers crossed that you, and others like you, are helping, and will continue to help, both yourself and each other this way.

    That said, the reason I am commenting is mainly just that I read with great interest through your account of your recovery from your first bout of illness
    www.lymediseaseaction.org.uk/wp-content/uploads/2011/08/Story-Nicola-Seal.pdf

    and noticed a couple of small possible typos which I thought you might like to be aware of, in case you are not already.

    -Firstly June 19th 08 and June 15th 08 events are out of chronological sequence.

    -Secondly right near the end, should "December 2009" read "December 2008"?

    No need to leave this message on your blog if you prefer not to: I don't mind either way. I am really just using the blog as a way of communicating the above to you personally.

    Regards,

    Dave

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  5. I have just found your blog - love your humour and no nonsense practical approach. I too contracted Lymes in Scotland in 2008 (had the rash but didnt realise what it was)but it took nearly 2 years of increasing illness before I myself diagnosed it and insisted the doctor test for it - the tests came back positive. One month of antibiotics was not good enough and I ended up taking them for 8 months...I was diagnosed with Chronic fatigue post Lymes by the infectious diseases clinic in Dundee. I consider myself as cured as I will probably ever be but dread it coming back. Mine was mainly severe brainfog and exhaustion and weakness. I now live in Australia and there is a lot of debate here with medics insisting that it doesnt happen here - so many people have the symptoms... Keep up the good work!

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  6. thank you for your blog...unfortunately the doubting Thomas's of the medical world are still thriving today 2016.!!! fortunately my GP did eventually refer me to the Hallamshire where I received the IV infusions, but after 10 days I developed C.diff...so they were abandoned. I did however feel a lot better after the C.diff disappeared. A couple of months on I feel as though the Lymes has reappeared in the form of lethargy, joint pain and fevers. Brain fog has just reared its ugly head with the accompaniment of the staggered gait, although that seems to have subsided at the mo.
    During the early hours of today however, I woke with acute pain in my shoulder joint absolute agony...have spoken to my GP who says no nothing to do with Lymes, must be a trapped nerve..Im to see him later today. Iv spoken to the Consultant who treated me at the hospital last year and his opinion is that I am not suffering from Lymes again as the first lot of antibiotics would have done the job.!!

    I think now after some research I am going to investigate sending my own blood sample to Inverness as they appear to be up to date on findings in their Labs...Hopefully my GP will agree to this....watch this space. Nicola I would however like to have the GPs name in Yorkshire. thank you and good luck

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  7. I would like to contact you. I have the EXACT same rash and my doctor ordered a lyme test three days ago. you can reach me at redheadmry@comcast.net. I was soooo thankful I found your rash pictures. I was bit by biting flies in wyoming while camping three months ago and the last two and a half months have been hell.

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