I have waited a few of days before writing my blog this week for two reasons:
a) I was angry and didn't want to be unreasonable in what I wrote, and
b) I was exhausted
A few days ago I went for a double-ology hospital appointment. Cardiology- I was having an Echocardiogram to check for physical heart defects following three ECG's showing conduction problems. Neurology- to be assessed for what seem to be neurological symptoms (most obvious being my odd walk).
Cardiology was fine- just a scan, very interesting seeing an ultrasound of my heart- all flappy valves and blue and red colours swishing about-an abstract painting in my chest! They couldn't see anything obviously wrong, which is reassuring, just a bit of dodgy wiring then.
Then I went for a half hour walk around the hospital grounds to get my legs nice and wobbly- this was in addition to not taking my tablets for a few days - the antibiotics had been working too well and my legs were quite good, but I wanted them to see me in a wobblier state. I feel quite smug since the not taking antibiotics for a few days resulted in a marked deterioration, and then going back on them (after seeing the neurologist) has resulted in an improvement again- hey presto!
Neurology- ummm.....an experience. Prior to our consultation, I sent the consultant a summary of my current tests and symptoms and previous illness plus a copy of my talk for medics that I had given at the hospital previously. I thought she might appreciate some background as I've had a lot of private tests etc that are not in my NHS notes. The talk was really to show that I know what I'm talking about re Lyme.
The first thing that she said was "Thank-you for that, did you think I knew nothing about Lyme?" (pissed off tone). Good start then. Then she said " I'll just say straight off that I am not going to argue with the Infectious diseases consultant (who says it's a post infective response to a Rhinovirus (cold virus!)). You've had adequate treatment and you've never tested positive".
So you've got an open mind then?! If 'adequate treatment' leaves the patient still unable to walk properly, dizzy, nauseous, knackered, twitching muscles, swollen glands, headache, insomnia, night sweats, travelling joint and muscle pains and slipping into mental deterioration, then I'm not sure it's adequate is it? I have never tested positive on the 5 NHS ELISA's I've had for Lyme- this is true, but then they have never done a western blot (they refuse to do so since it is a two step testing procedure and you have to get a positive or equivocal ELISA before they will do the western blot- at 53% sensitivity, I am not suprised I have never had a postive ELISA!). I pointed to my two positive Lyme IgG Igenex western blots (privately done, I explained, a specialist laboratory in tick-borne disease that is accepted by many state health boards and an insurance company in the US)- no comment from the neurologist.
.. and so it went.. cursory Neurological exam (we only had half and hour).. I couldn't touch my finger to my nose, or do the heel down the shin thing properly, and my left leg was so weak I could hardly lift it from the bed. No comment on any of that.
"people with Lyme disease don't walk like you do, they are either ataxic (kind of juddery and all over the place) or spastic (rigid muscles)". I agree, my walk is neither of these things- but I pointed out the Lymie I had met who had a walk exactly like mine. No comment. I inquired whether an MRI would be worth repeating (I had had one back in 2008 which showed two non-specific hyperintensities- I wondered if there might be more of them now) "no, it's not cerebellar" she said. OK, I thought but perhaps it's somewhere else in my brain, or spine, even? No, she said. Without an MRI, how can she tell that?? I know there are some general patterns to Lyme, but one thing I have learned about this disease is that it is incredibly variable- no two patients are alike and the symptoms depend on where the bacteria is attacking-since it can attack and invade many different organs and tissues, the symptoms can be many and varied. Her rigid thinking about my walk made no sense.
" we will send you for nerve conduction tests and check your thyroid again". I had nerve conduction tests back in 2008, but they showed nothing. I told her this, she said "if they show nothing again, then it's not muscular and it's not nerves" What is it then? I asked- because it's not psychological, I said (I thought this was where she was headed). "functional illnesses do exist, soldiers in the war found their legs wouldn't carry them over the trenches". Slightly flabbergasted at this ridiculous comparison, I pointed out that they were experiencing traumatic events and I had a very nice life with no traumas. No comment from her. I really resent this 'functional' nonsense- just because they don't know what it is, they can't admit that, instead they turn it on the patient- it must be in their head. Arrogant and simplistic. She wasn't altogether keen when I asked for her to send me copies of any letters she writes. She had to say yes, but she didn't like it. As well as wanting to know what is written about me, I thought it might dissuade her from writing anything too outrageous to my GP- at present the GP is sympathetic.
So yeah, waste of time, she had made up her mind from the outset. It couldn't possibly be Lyme since chronic Lyme does not exist. I wasn't surprised. Every senior hospital doctor I have met has come out with similar stuff. I've been told I have a "software problem" by another Neurologist and sent to a psychologist (who said I had no mental health problems). The infection consultants have said "post-viral fatigue","suspected mycoplasma" "virus", "post-infective response to a Rhinovirus" (my favourite!) and also a seemingly made-up phenomenon of "inflammatory memory" where my body had "remembered how to react to an infection and had reacted to another bug as if I had Lyme" . What a creative lot of people they are!!
There have been a few doctors who seemed more open minded. My current GP seems to believe me, for now at least (but no NHS diagnosis=no NHS treatment). A registrar in infectious diseases conceeded there was a "possibility" that this was a Lyme relapse "we don't know everything about Lyme" he said. A junior doctor seemed to think it was Lyme, but got overruled by a consultant. An F1 said "well, there's clearly something wrong".. but as a junior he could do nothing..... grrr....
I know it's Lyme. The four private Lyme doctors I have seen have all said it's Lyme. My tests say it's Lyme. My response to antibiotics tells me it's bacterial. I'm just thankful I have the money and mental resources to be able to seek out private treatment- I know so many people who are not able to do that. If I'm upset at my NHS treatment, how must they feel when their only hope for diagnosis and treatment is withheld from them ? They are told it's not Lyme by ignorant, arrogant people who read a few guidelines and articles, accept their contents completely and without question and then act as if they are experts in this astoundingly complex disease.