I'm on my way to Washington to see my LLMD, I'm gutted because I don't want to leave our 2 yr old daughter as I just spent 5 days in hospital with pericarditis (infection/inflammation of the sac surrounding the heart). After toddler nightmares and lots of tears, she finally got mummy home and I waltz out of the door again, breaking her heart but hopefully not literally mine.
I have bit of a dicky ticker anyway- they have found what looks like cardiac damage from Lyme. Previous NHS tests have shown what looks like either damage to the heart muscle, or furred up coronary arteries, or both. Of course, the NHS being the chronic Lyme-deniers that they are have decided it would be historical heart muscle damage, but they do at least accept that it could be due to Lyme. I'm waiting on a cardiac MRI and possibly angiogram to find out more.
The last couple of months I've been having sharp random chest pains so I made a GP appointment to try to get the MRI hurried up. A few days before the GP appointment, our daughter gets hand foot and mouth disease (not foot and mouth- she's not a cow!:-)) I do my usual googling and see that the virus that causes this-coxsackie virus- is also quite fond of infecting hearts and doing nasty things. So I moan about this on Facebook, ooh, daughter in isolation (cancel the childminder/play dates) and say I hope I don't get it as I'd read it can infect the heart. I think I may actually be mystic meg....
The day before the GP appointment I feel terrible- extremely breathless, heart feels sore and not right, its racing and thudding on slightest exertion, bit of a temperature.
Cue more moaning on Facebook. Lyme friends urge me to go to A and E. If it's life and death, I would consider going, otherwise the judgemental looks and wanky attitude when you tell them you have Lyme isn't worth it. Besides, I'm not traipsing kiddo into A and E.
GP says I'm tachycardic (high pulse rate) no shit Sherlock. My BP is 139 over something-that's high for me, normally I'm 110, 115 max. I express concern that I've caught kiddos coxsackie virus and its caused carditis. She says I'm worrying about nothing, coxsackie B causes carditis, wheareas coxsackie A causes hand foot and mouth. I tell her I've read sources which suggest its not that simple, that some coxsackie A strains can cause carditis and some coxsackie B strains can cause hand foot and mouth. She says she will try to hurry up my MRI. The appointment is over. I can barely make it down the corridor from her room....this just isn't right, my instinct is disagreeing within her.
Next day at home, I nearly pass out just crossing the room. Carrying kiddo upstairs for her nap feels like a near death experience. I call John home from his important meeting, I am quite scared, off to a and e we go.
Dickhead carpark barrier guy directs us to some car park down a hill instead of letting John drop me at the door. He obviously has amazing medical knowledge and X-ray vision as I'm just going A and E for a splinter.....grrr....collapse on pavement, nice passing nurse brings me a wheelchair...
The new emergency care centre is super posh and the have me triaged, bled and hooked up to an ECG in minutes. They persuade the cardiac ward to take me -this is Friday afternoon- not a good time to be admitted-skeleton staff, no scans and a couple of junior doctors responsible for wards full of patients. I'm slightly shitting it at this point, perhaps this is Lyme carditis? Feels like pericarditis (gets worse on leaning back, breathing deeply or picking things off floor). If its Lyme carditis I'm pretty sure they'll do everything they can to avoid giving me antibiotics, or even diagnosing me. I ask them to ring my LLMD who doesn't work weekends but their office is open for a few more hours. The registrar - who won't even come talk to me- says he won't and forbids his junior from doing so either. Great.
|Me and my telemetry heart monitor- very star trek!|
I've apparently not had a heart attack so they don't seem very bothered. The resting pulse of 109 is concerning me, but not really them. Next morning, the cardiologist agrees with my instinct of pericarditis but refuses a trial of antibiotics "we'll have to talk to the infection unit first" they say.... The same infection unit that said I had a cold, not chronic Lyme and refused to treat me for my relapse last year " Lyme doesn't relapse" they said. Bollocks.
Sat am- Bedside heart ultrasound shows fluid around my heart- not tons but enough to explain my symptoms and suggest pericarditis.
I don't see the cardiologist again for another two days and get no treatment-nothing- until three days later. Then it's ibuprofen- for suspected viral pericarditis. By this stage, I've begun to get a bit better. I managed to speak to the nurse practictioner at the LLMD office on Friday pm, it's a dodgy line and I'm struggling to explain things. She suggests coming off all meds, including my antibiotics, she thinks it might be toxic overload from herxing too hard. The old instinct says otherwise but I do as he says, I trust my LLMD more than normal doctors. So I stop my pills and to my relief, over the weekend, I improve a little bit.
I think it through- viral pericarditis could self-resolve. Lyme pericarditis is unlikely to do so. Also, I was on heavy duty combination antibiotics the week it happened. The coincidence with the hand foot and mouth seems suspicious. My instinct is saying pericarditis from Coxsackie virus.
Monday morning, cardiologist reappears and concurs with my instinct. I know he's coming at it from a different angle though- he says Lyme pericarditis is unlikely- it occurs with acute Lyme. I know this isn't true, it can occur at anytime during a Lyme infection- I've seen papers saying this and LLMD nurse said that too. I don't argue- I think it's viral and since I need him give me expensive scans for my existing heart problems, I don't want to piss him off. You pick your battles when you have chronic Lyme.
I tell him I decided to go back on my oral antibiotics- he says ok and even offers to write a script for the cefuroxime and ciprofloxacin for 5 days -yey!! Free drugs. Yes please! They give me ibuprofen as well, to reduce inflammation.
I'd got john to bring me my stash of drugs from home, I wasn't going to rely on the foibles of the NHS - I had antibiotics and I was going to take them- viral or not- I wasn't about to let Lyme join the party in my heart. Normally in hospital, they take your drugs off you and dish them out to you so they remain in control and know what you've had. Ever the troublesome patient, I refused to let them do that and said I would self administer from my giant pill sorter. The nurses, consultant and junior doctors seemed fine with this. Clearly this irked the hospital pharmacist however, as she came in my room, went through all my drugs to "check expiry dates" and took away the ciprofloxacin that the kindly nurse had given me. When I enquired about the cefuroxime she said they didn't have any. Could they order it? "We'll see" she said. I was pretty sure the evil infection unit two floors up used it. I smelled an attitude...this pissed me off....if it wasn't for the wankers in the infection unit, I wouldn't have chronic Lyme. I shouldn't have to pay thousands of pounds and fly halfway across the globe to be treated for an infectious disease that science said could become chronic and persist. I repeatedly asked for the 5 days of antibiotics that I HAD BEEN PRESCRIBED! and I got a total of 3 tablets of ciprofloxacin out of the 10 I should have got and the cefuroxime never did materialise......irritating.
I continued to gradually get better-heart rate was a less alarming 85-95 (it's normally around 60) and the breathlessness improved ( I could turn over in bed without gasping). I was getting out and going home.
The day I left, I got shifted to the day room so they could clean my room. I'd previously avoided this as I hadn't wanted to infect other patients with this contagious Coxsackie virus.
I got talking to this youngish chap, slim, fit looking, wore walking socks and outdoors trainers. "What was I in for?" he asked "Viral pericarditis but I had Lyme disease as well" I replied. "Really?" He said. " I was tested for Lyme and it came back negative but I wonder if I have it" he says.....former trialthelete, hill walker, dog person. Fit as a fiddle until three years ago when he came down with a mystery illness. Left sided weakness, Bell's palsy, autonomic neuropathy, heart conduction problems, heart muscle damage that was unexplained. He had word finding difficulties and cognitive and memory problems, persistent swollen glands, intermittent stiff neck, headache and light sensitivity that came and went. Thyroid hashimotos, uncontrolled high blood pressure that didn't respond to blood pressure meds and had no family history or risk factors. He had depression, shooting pains, numbness, intermittent night sweats that felt like malaria. His symptoms flared every 4 weeks. He ate healthily, didn't smoke or drink. He had had a lot of tick bites. He lived in a lyme hotspot in Scotland. He had done a lot of open water swimming and had travelled extensively.
No-one knew what was wrong with him. I did. It comes to something when a fleet of top doctors couldn't figure it out but a chance encounter with another patient could. We had a long conversation, I gave him a lot of info. I think his mind was somewhat blown.
"Don't just listen to me", I said. "Do your research and trust your instinct - always trust your instinct, you are the best judge of you...."