One for the Newbies

The ace people at Lyme disease UK asked me to write a guest blog post for their website, so I thought I'd also put it on my blog, here it is:

So, I’m, a guest blog! How exciting, do I get fluffy towels and a mini hand soap? Cool.

I was asked to write about my experiences of the NHS and Lyme, and working within the system. My experiences- ‘mostly pants’ just about sums it up. Working within the system – accept they will know as much about Lyme as I know about football and get from them what you can.

Firstly, I should emphasise that I am one of the fortunate ones. I got diagnosed quickly and could afford to ditch the NHS numpties and get help promptly, many (most) aren’t as fortunate, so my story represents the ‘not too bad’ end of the spectrum, believe it or not....

One day, 5.5 yrs ago, a teeny tiny tick on the west coast of Scotland changed my life irreversibly. As an ecologist/entomologist, I had heard of Lyme, so my first doctor was Dr Google, who suggested that the severe flu-like illness, sore knees, stomach ache and headache, 11 days after a tick bite ‘could’ have been Lyme. Then followed Dr “yeah, it’s not flu” (GP), Dr “you are drenched in sweat” (Infection registrar), Dr “mmm...scratchy head at negative NHS ELISA”, and Dr “here’s some low dose doxycycline, take your meningitis symptoms and inability to walk properly home with you” (Infection registrar).

I negotiated for an increased dose of doxy from Dr scratchy head and after 4 weeks of that, I was a bit better but still walking like an arthritic antelope and feeling grim, so back into hospital I went under the ‘care’ of Dr Scratchy head and his sidekick Dr Klutz. Dr Klutz earned his title by leaving a dinner plate sized bruise on my arm from taking blood - eliciting a ‘wow!’ from Dr “well, there’s clearly something wrong with you” (Junior). Dr Klutz then got his gold star in cack-handedness by cocking up my lumbar puncture, leaving me with the mother of all postural headaches for 6 days. Spinal fluid leaking, head in a vice, throwing up from the pain, I stagger down the corridor, crying, looking for a nurse to give me painkillers. They had put me on the top floor alone so they could forget about me and ignore my buzzer. Passing Dr Klutz, with tears streaming down my face, he ignores me and then refuses to come speak to me about why I have a hole in my dura. That was a fun week.

An MRI of my brain showed some hyperintensities but these were glossed over by Dr “you have a software problem” (Neurologist). Software boy referred me to Dr “you’re not nuts”- a  consultant psychiatrist. Meanwhile, Dr Scratchy head had gotten back another negative NHS ELISA and had morphed into Dr “you’ve had enough antibiotics, away with you”. His pal, Dr “post viral fatigue, dismissive wave of hand” concurred.

My private specialist experiences were somewhat better- Dr “ you’ve got Lyme. Me- but, ergh,...but.. I’m telling you, you’ve got Lyme...hard stare”. OK then. She brought in Dr “ooh, lets video your funny walk” and I also saw Dr “let’s not stop the antibiotics yet, I don’t want to see you in a wheelchair”. With their help, I got well, eventually with the ingestion of a ton of antibiotics (3 months IV Ceftriaxone, followed by 16 months combination orals). No symptoms at all for 2.5 years, then I relapsed, possibly due to a combination of stress from a house move, a miscarriage and a minor bug.

This time, I was what they call a ‘patient expert’. I’d given talks on Lyme, had a filing cabinet full of Lyme papers and kept up with the latest research. I wasn’t taking any shit but at the same time, I knew fighting the NHS was probably going to be fruitless. So I’d try to get out of them what I could. For actual Lyme treatment I knew I would probably have to pay privately. Knowing this made the whole thing a lot less stressful- my life wasn’t depending on these people. I knew that I knew much much more than them so their ill informed opinions didn’t really matter to me. They still came out with some corkers though. Dr scratchy head became Dr “it’s a rhinovirus”. This is what causes the common cold- some cold!. I was referred to Dr “you’re like a world war 2 solider who’s legs wouldn’t carry them out of the trenches” (consultant neurologist). She was also known as Dr “pants on fire” as she had ignored the findings of the electrophysiologist – Dr “absence of proof is not proof of absence”, who found some evidence of nerve root problems. He was actually interested and open minded and thought for himself. Of course Dr “pants on fire” didn’t want to hear his opinions or believe the results of her own tests, so she stamped “nutsoid” on my file. So I stamped “official complaint” on hers....

Fortunately, my GP, was an intelligent woman who seemed to believe me. I found her by asking another doctor at the practice who the best person was to deal with Lyme. I was completely honest with her, gave her some recent key papers (but not too many). I drip fed her info and kept in fairly regular contact, seeing her when I thought she could help me with something. She couldn’t do anything re treatment as she was she was out trumped by the hospital doctors. She did agree to give me monthly liver function, kidney, thyroid and blood counts though. She also wrote to various NHS departments asking for heart scans and tests (that were done- my heart is officially poorly), thyroid scan (refused), and gallbladder scan and removal (scan done, removal pending). She asks “what can I do for you?” when I go in and though I know I can’t ask “give me free and competent NHS treatment”, I can at least get painkillers, omeprazole, ECG’s and a sympathetic ear from her. She doesn’t pour scorn on my American Lyme doctors opinions and she agrees that stealth infections are ‘scary’.

So what have I learned from all of this? You probably have to be your own doctor. Yes, I know this is probably like asking Kerry Katona to perform brain surgery, but that’s the way it is. You need to take ownership of you. Read, read, and read some more. If your symptoms don’t fit your diagnosis, don’t just accept it. Use all the resources available to you - UK Lyme disease discussion group on facebook is a great place to find out more and get support. Lyme Disease Action,(including their two email addresses for patients and medics ),  Eurolyme, Dr Burrascanos Guidelines (which are a bit old and not referenced but are still very useful, especially for people new to Lyme). I also quite like the german guidelines  which are well referenced, acknowledge the areas of uncertainty and are reasonably detailed. Tick talk Ireland have a fantastic blog, I particularly like their articles on  Mythbusting and Guide for Newcomers.  BADA UK have good info on tick removal, prevention and other tick borne diseases.  Lyme books such as Cure Unknown and Dr Horowitz’s new book would be worth reading.  Watch “Under our skin” (available on you tube, bit cheesy but helps beginners understand the controversy.) Probably best steer clear of other you tube videos unless you want to become massively depressed about it all.  You can also watch my overview talk on Lyme which I gave to medics at my local hospital in 2012 (join the facebook group and it’s in the files).

Getting a diagnosis is just the first hurdle. There are a ton of treatment options, some pricier than others. Choose carefully, seeing a Lyme doctor privately can be very expensive – especially the start up costs and you don’t want to make an expensive mistake. I have a collection of patient reports on various Lyme doctors and clinics, if you would like a copy or would like to contribute with a short review of your own, please email me at nseal@yahoo.com. Most of all- do not give up the fight and trust your instincts.