Tuesday, 17 September 2013

Washington LLMD trip

Not ideal timing - 3 days after I get discharged from hospital for pericarditis, I am winging my way across the atlantic to see my LLMD. It's 10 months since my last visit, so that's not bad (I had two phone consults in between).

My lovely dad is coming with me, thank goodness, I really need him. After the heart trouble, I am needing wheel chaired about. We only have a fairly rubbish, half-broken non self-propelling wheelchair that a kind friend had given us. So my fabby sister buys me a new spangly one off ebay. Trouble is, when she gets it in the car she discovers that it is the wheelchair of weed - it literally honks of dope! Obviously the mannie who sold it to her was something of a toker! He denies this of course and won't take it back. I have visions of the US customs sniffer dog singling me out whilst the customs offcers get their marigold gloves out, so we take the broken chair of doom instead ;-)

The journey was fine - long, but fine. Met up with an old friend who works for an NGO and we chat about anti malarials and how crooked and corrupted the pharmaceutical/medical world is. I'd been reading this book, which I'd really recommend - about how so-called 'evidenced-based' medicine really is anything but....

Anyway.. I digress. LLMD juicy details for the Lyme nerds amoungst you....I'll do a shit sandwich...

The good....very good physical examination, I seem to have no gag reflex left (tongue depressor rammed to back of throat), ataxia seems gone, capillary refill seemed ok, everything else fine.

The bad- his timescales are longer than I'd have hoped for. 6 months and I'll be 'doing very well' and 12 months-2 years more treatment and I'll be 'good to go'. I know he tapers his treatments for quite a long time though, so I should spend quite a long time with 1 week in 4 on antibiotics. He aims for you to have 3 weeks with no bug-killers without relapse for quite some time before trying no killers.

I ask about having another child. He pulls a face and asks how old I am. 39, 40 in February, I say. Ummm... he says.....I ask what treatment he gives for pregnancy, he says amoxicillin and azithromycin, these they know are safe for the bub. Also 1 week in 3 or 4 antibiotics for my partner. He says they don't know if this helps prevent sexual transmission but it's better than doing nothing. I want to be symptom-free before trying for a bub, I can't risk passing it on to John or a little bean, so I'll just have to wait till then...disappointed.

He wants my gallbladder. Yeah, he's a blood thirsty cannibal with a penchant for bile... no, he thinks it'd be in my best interests to have it whipped out. He says it's diseased (and it does blumin' hurt when he prods it) and that inflammation is causing unnecessary stress on an already stressed system. He gives me a letter to take to my GP about it. When I ask if he thinks it's a refuge for the bacteria, he says they used to test patients' removed gallbladders for Lyme and would find it in a PCR. I'd previously resisted the P.A.'s recommendations that I have it out- the ultrasound seemed fine and I quite like having all the body parts I was born with. He says the ultrasounds are not reliable and they usually find a gallbladder that looked fine on an ultrasound will be partly necrotic/very diseased. Ok, I'll try my best to persuade the NHS then......

More good- I've kicked the Babesia! He says he uses the Coartem as a 'challenge' and if you don't react to it (which I didn't) then you've probably got rid of the Babesia! Yey, whoop, holler!!!!:-)

Overall, he says I'm doing well, not there yet, but doing well. He seemed unconcerned about the pericarditis and Coxsackie. He says the best chance I have of kicking the Coxsackie is to treat the Lyme and thus allow my immune system to recover to fight it off myself. He says conventional anti-virals aren't worth taking. I ask about high strength Allicin (which I'd read was strongly anti-viral)- he says he doesn't know about that. To be fair, he's really not the herbal type of doctor, I think I'm on my own with that kind of stuff. I knew all along that I'd ideally have liked a LLMD who incorporated some herbal treatments into their protocols as I thought that that would be useful. However, it's not that simple. It was a case of finding a doctor who it was practical to see (no frequent in-person visits), who wasn't stupidly expensive and who was taking on patients and who didn't have a long long waiting list. I'm pretty happy with everything else that he's done, so I think if I want some herbal additions I can just research them myself. There may come a time when I want to switch doctors, but for now, I'll stick where I am. There are no perfect Lyme doctors, a lot of them are kind of making it up as they go along-  mine included (check your prescriptions people- I found mistakes!).

The really good thing I like about him is that he seems to be on the ball when it comes to looking for new methods of attack, he's not resting on his laurels here. He is putting me on this new protocol which he says physically breaks down the biofilms. He discovered this 'Lactoferrin/Xylitol' protocol when reading work done on wound healing and biofilms. There are several papers which show that the combination of Lactoferrin (which chelates Iron needed in Biofilm formation) and Xylitol (which physically disrupts the biofilm) can help wound healing. He says its really effective in treating Lyme biofilms, and yes, Xylitol is a sweetener and yes, they are both non-prescription. For the first time ever, he says I need to titrate up the doses slowly as they are so potent and cause big herxes. Woo, sounds good stuff.

I'm doing this in combination with my other killers - Lactoferrin/xylitol for 8 days, with ceftin, rifabutin mon, wed, fri and septra DS, daraprim and folinic acid mon-fri and tinidazole thur + fri.  Then I have Ceftin and ciprofoloxacin and folinic acid for 5 days, then 2-3 weeks off, it depends how I feel. Plus my usual bucket loads of various supplements throughout. He says I can drop the nattokinase which he says is a fairly weak biofilm breaker.

We have a good chat about the political situation with Lyme. I fill him in on what's been happening in blighty, the new 'clinic' and all that. My dad and I are quite impressed by how good value this consultation is - $240 (£150) and for that you get 45 mins with the top man, physical exam, as many prescriptions as you need (I had 8), a colour-coded drug schedule, review of supplements, write-up letter and unlimited free follow up questions from triage nurses (who actually know quite a lot about Lyme). Anyone who says LLMD' s are ripping us off just isn't informed. This guy was seeing two patients after me - and it was 5:15 pm when I left.  He's in early each day and commutes a long way from his family. He has an office full of (generally) helpful support staff he has to keep paid and he has experienced persecution and bankruptcy from just helping people like me. I thank him for doing what he does. He really is one of the good guys.

Some gratuitous showing off about my healthy eating. I didn't have a burger in Washington and subsequent stomach pains at all, honest...;-)

Fire service ambulance. A dicky bird told me this is because people who didn't have insurance weren't getting picked up at the scenes of accidents and so the fire service ended up doing it instead.


Pericarditis and trusting your instinct

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!
Scary 'hospital use only' orange juice- must be strong stuff, perhaps that's why it's in such little cartons- they don't want you to overdose!

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...."