Monday, 18 February 2013

Money can't buy health..except it can.

I am doing well. Very well. I have money. Not a lot, but enough. The only reason I am not wheelchair bound, the only reason I have a healthy daughter, the only reason I don't have more extensive permanent heart and nerve damage, the only reason I can expect to recover, is that I can afford to pay for treatment. I am a working class girl who has worked her way into a more affluent life. I share my life with a wonderful man who earns enough to pay my medical bills. We live frugally, swopping nights out, new clothes, home improvements etc for antibiotics and consultation fees. My parents dipped into their retirement funds to get me well. I didn't grow up thinking, oooh, one day I'll be able to afford life-saving medicines when I get seriously ill... that's what the NHS is for. Sure, it's not perfect, but we live in a country where no-one is denied life-saving treatment because they cannot pay. Unless you have tick-borne disease, then you're absolutely screwed.

So, what does it cost? I had around 19 months of treatment from 2008-2010 when I first got ill. I spent around £13,000 then. I got nearly two months of doxycycline and 4 weeks IV ceftriaxone on the NHS, then they washed their hands of me. So, I went to the best place in the UK for Lyme and we spent all our savings and my parents money on getting me well. The clinic isn't some swish private hospital full of money grabbing doctors. It's a bit tatty and old and hidden on an industrial estate near Luton. It seems expensive but I don't think they don't make much money on the essentials, I couldn't buy antibiotics and equivalent quality supplements cheaper elsewhere - and I did look. Their consultation fees are standard rates for private doctors, nothing ridiculous. They are sticking their heads above the parapet and treating us when no-one else wants to risk it. For that, I am eternally grateful. They aren't perfect, but they are there. A lot of my money went on private nursing care - £8400 for 8 weeks of IV ceftriaxone at £175 a day, 6 days a week. The clinic didn't earn a penny out of that. They don't allow it now due to the risks of something going wrong, they have to watch their backs. Unfortunately, most of their doctors have now left and UK patients now have very limited choices.

Thanks to that treatment, I had 2.5 years of being completely well. We had a gorgeous daughter, who seems perfectly healthy, she is the best thing that has ever happened to us, and I am thankful for the opportunity of having her every day. I went back to work, got back on my bike, did some hillwalking, took up pottery, moved house to a nice suburb, enjoyed bringing up my daughter. When I relapsed June 2012, I knew it was Lyme immediately. I found myself on the kitchen floor, unable to walk, with a raging flu-like illness, thinking, this is it, it's back. Cue the usual rigmarole of being admitted to hospital and them telling me a load of old rubbish-"I'm not convinced by your legs" (she wrote "functional?" in my notes-that old chestnut). After toying with the idea of Mycoplasma, they settled on it being a cold virus. Laughable, except it wasn't actually funny.

I recognised the distinctive gait problem, migratory joint and muscle pains, twitching, sore throat, severe flu-like illness with soaking sweats and  bone-rattling chills, erratic blood pressure etc. I knew it was Lyme so I got my partner to make an appointment with the Luton clinic straight away. They confirmed it (as did a new doc on the Lyme block who we went to see for good measure)- classic relapsing neuroborreliosis. I got another positive Igenex western blot (IgG). This time, it was a different doc and they decided not to give IV and go the oral combination antibiotic route instead. After a couple of months, it was clear it was working, but I had a few nagging doubts about whether this was the best standard of care I could get, so I did some research into other options.

I looked into European clinics but had doubts about the most well known one and couldn't get enough information to make a decision about the others. It's a cloak and dagger world, most places don't advertise and they don't make public the details of their treatments. In the absence of solid clinical trials on what the best treatments are for chronic Lyme, I wanted to go where the greatest level of experience was.

I decided on America. Ringing around all the big name US LLMD's I had heard of, my options dwindled. Some where frighteningly expensive. Some didn't treat people outside their state. Some required very frequent in-person visits. Some weren't taking on patients at all or had waiting lists over a year long. I was left with one option, and I'm glad I took it. I don't think they'd suit everyone, but they suit me. They confirmed my suspicions that I probably had co-infections. They said probably Babesia and Bartonella and maybe others. They had extensive clinical experience, which meant they saw  things that less experienced docs might have missed. They didn't run loads of expensive tests which would probably be unreliable and ultimately pointless. I think it helped that I already had two positive Igenex IgG's for Borrelia burgdorferi, once recent one and one in 2008. I think it also probably helped that I had already been diagnosed by several other UK LLMD's, and had responded well to treatment. I also think being articulate and not incredibly ill or cognitively impaired was in my favour. I could express myself well - in person and during phone consults. I had written an extensive chronological history, which they found very helpful. Thankfully, they decided on oral rather than IV treatments for me. Apparently, only 25% of their patients need IV treatments- and they see a lot of very sick people. This meant we stood a chance of being able to afford it.

So what has it cost? Since the beginning of December 2012, when I had my first appointment in the US, I have spent £2040 on travel, accommodation and associated costs (for two people, one trip, 5 days), total  consultation fees have been £597 (one in person, one telephone follow-up), bloods were a mere £100- just CBC and metabolic panel, no Lyme tests as I'd already had recent Igenex, drugs and neutraceuticals have totalled £1457 so far- the mepron is expensive, but I've not yet used 2 bottles, at $662 a bottle. I anticipate the per monthly drug bill to decrease as I stop the mepron. Costs should reduce as I get better and I can go longer between appointments and even further when I can start doing 2 weeks on, 2 weeks off the drugs.

Total cost so far for US treatment? About £4230. All costs are approximate, I've bought supplements and drugs from so many different places, it's hard to remember them all. We've spent much less than I was fearing, and it's been worth it, I feel I'm on the right track with these guys and am optimistic that I will be symptom-free within a year (they haven't said that, I have said that to myself). For some people, recovery may be only partial, so some costs could be ongoing. I have a few tips for saving money:

  •  If you have a tight or very fixed budget, tell your doctor that. Be upfront about it, ask them to give you only the essentials. Re testing, ask- "if I don't have this test, how will that affect my treatment?" If they are recommending lots of repeat or other testing, ask "is this really necessary?" Use your judgement, trust your instincts, do your research.
  • Shop around for drugs and supplements. Drugs particularly can vary wildly in price. I used  to find the best price for each drug in online pharmacies. I used my US prescription (which can't be used in British pharmacies), emailed them a copy and ordered over the phone (I couldn't order online they will be set up for US zip codes for online orders,  they have a special international phone number for international orders). You may get hold ups with customs and have to pay extra charges, which is a pain. I've had to wait around 1 month for delivery, but that was at Christmas when customs are super busy. You can't get controlled drugs online, so if you are going to go the temazepam route, get that in the states.
  • If you want to get drugs whilst you are there, I had no problem bringing drugs back through as hand luggage. I had a doctors note from the clinic and pharmacy receipts. I went to a not for profit pharmacy, which I found on an online pharmacy checker. This was much cheaper than normal pharmacies and seemed completely legit- they were founded to serve AIDS/HIV patients. They weren't cheapest for Mepron though, so I had to order that online and wait.
  • Keep your GP on side. Mine has been very helpful. She has set it up so I can have monthly blood counts, liver function, kidney and thyroid tests at the surgery. I then get hard copies of these and email them to the US. The GP has also managed to wangle me some of the testing that the US doc recommended- they've done a gallbladder ultrasound, and I've got a cardiac ultrasound booked in. They refused a thyroid scan, glalbladder CCK challenge and cardiac nuclear stress test, but you can't win em all....
  • If you need help with pain or sleeping, ask your GP. Mine has prescribed me Amitriptyline 10mg nightly, which is for neuropathic pain. I didn't ask for anything for sleep, but have recently started taking GABA at 600mg a night, which was £30 for about 2 months worth, which seems to have helped.
I'm not writing this blog entry because I want to moan about how much it has all cost. Sure, I'd rather have spent the money on new carpets, a new boiler and other such fripperies, but I am one of the lucky ones. I caught this early, pursued aggressive treatment and could afford it. I could also tolerate the treatment because I hadn't had years of these bugs wreaking havoc on my body, untamed and undetected. I hear stories every day about people who are far less fortunate and it makes me incredibly angry. It shouldn't be like this, but it is. Bear in mind the figures above are ballpark only, everyone is different.

Tuesday, 12 February 2013

Vitamins, GABA, pulsed regime and crumpets.

Well, I've not blogged for a while because I've been busier than a bee on amphetamines. 

I've got to squeeze my blogging into my 12 hrs a week that I have childcare (evenings are spent largely comatose on the sofa with a brain comprised of tapioca, so not productive). It's a full time job being a Lymie, angry activist and general troublemaker. I'm not even that ill, I have absolutely no idea how those people who are really really sick manage it - especially those with kids - hats off to you! 

In my 12 hours of toddler-free time, I : blog, organize the UK Worldwide Lyme Protest, reply to emails and phone calls of other Lymies and relatives of patients, order and research supplements and drugs (and with a total of 16 supplements/neutraceuticals, 3 antibiotics and 2 anti-malarials, 1 pain drug to keep on top of, this is a lot of work!), count out my handfuls of tablets into my pill box weekly, swallow and slurp said medication with appropriate food at appropriate times,  fill in paperwork for my LLMD, go to GP and hospital appointments, decipher medical jargon and read latest developments in Lyme world, make official complaints about lying Neurologists (ha ha lady, you're not getting off that easily!), visit hairdressers and dentists, and sometimes I even get to rest or sleep ;-).

So, what's been gaaaan oon? Well, I had a great phone consultation with my lovely PA (Physicians Assistant) in the states. My routine bloods are fine apart from my pituitary is a bit naughty and is producing too much Thyroid Stimulating Hormone. My Vit D levels are mega low- 15 and they like them to be nearer 100. Googling seems to suggest 30-80 is a more realistic target to aim for, so I'm popping Vitamin D at 10,000 IUD a day with  1g Vit C for absorption. Living in northern Scotland is not exactly conducive to sunbathing, so that's not really an option and you're not getting me on a sunbed, I'm not from Liverpool ;-) Vitamin B12 is also quite low at 492 when it should be more like 1000. I have no idea what units she was talking about by the way, lets call them 'Bobs per Blob' for fun. I also have low ferret (Ferretin and Iron) levels - I'm always losing those little mustelids. So, some work to do there with diet and pills.

I'm still finding it really hard to get to sleep, even when exhausted I lay there for a good 2 hours waiting to drop off. I baulked at the idea of taking the suggested Lorazepam, so she suggested something called GABA and also melatonin. I look GABA up and find it's an amino acid which can be used to down-regulate nervous activity, so is used in anxiety, sleep and as it also increases lean muscle mass, is also abused by bodybuilders. It doesn't seem to be available in many UK internet drug shops. This is apparently either the work of big Pharma taking it off the shelves because it works too well and competes with their pharmaceuticals, or the work of the UK government banning it because of it's use by bodybuilders- depends who you talk to or believe. Sounds good, so I've ordered some.

We had a really excellent conversation about pregnancy and Lyme but this is such a big topic, I'll save it for another post.

Overall though, I'm doing really well on their pulsed regime and I've not had the expected disastrous jelly legs during the one week in three where I don't have any antimicrobials. Infact, the last 4 weekly flare co-coincided with a week off the drugs and I was fearing the worst. We had a long drive down south for a family do and I was kind of dreading it, but instead of the full fat Elvis on a dozen cheeseburgers legs, I had a rather pathetic Shakin' Stevens affair, despite a couple of beers at the do and gluten-tastic food all weekend. Shattered when I got back and could hardly walk for my gallbladder appointment today, but  that's not suprising given I had such a hectic time and had to fast for my scan. They said my gallbladder looks fine but is quite 'gravelly'- perhaps I can use it to mulch the garden....

So in the way that cancer patients visualise their tumours and give them pet names, I've been having Marvel comic style fantasies about what is happening within my body. I've called this particular comic strip "Good cop, badass cop".. Good cop is a gentle chap with a soft welsh accent, he comes out on the drugs holidays to coax my various parasites out of their hidey holes. He promises a lovely warm bath for them comprised of antibiotic-free blood and with a side order of vulnerable tissues and red blood cells. So out they trot, my spirochetes, plasmodia and Bart bacteria, they do a bit of line dancing before "SCHLUPP"  a white blood cell comes along and gobbles a few up. Then along comes baddass cop, a nasty Schwarzenegger type figure with his heavy artillery of Azithromycin, Ceftin, Tinidazole, Artesunate and his special chemical weapon- toxic sludge Mepron. "BLAM!" "KERPOW!" "KERAAANG!"... the casulalties lay strewn about whilst the rest scurry off back to their refuges of biofilms, blood-brain barriers and connective tissue and they curl up into their cysts. There they sit, hunkering down until good cop comes along again to tease them back out into the open. 

Well, with my limited understanding of immunology and overactive imagination, that's how I see it!

I've also been struggling with the whole gluten-sensitivity thing. So, my LLMD says 'most chronic Lyme patients we see have gluten sensitivity". I admitted to having had a couple of episodes where I'd had cramps and trots after eating bread, so they say "lo, you must hereby forgo your lovely comforting delicious toasted bakery products and eat foul, dry, gritty pale imitations instead". Being a bit emotionally attached to toasted teacakes, I am rather reluctant to give them up. I have eaten bread and related goodies loads of times and not noticed stomach issues, so the few times it has happened seems like a price worth paying. Then again, I saw a paper that said that gluten sensitivity can manifest  with such strange things as Ataxia:

 This paper says:
Most patients who present with neurological manifestations of gluten sensitivity have no gastrointestinal symptoms.
The range of neurological manifestations of gluten sensitivity encountered in our specialist clinic over the past 15 years are listed in table 2. Cerebellar ataxia is one of the two most common neurological manifestations of gluten sensitivity. In a series of 500 patients with progressive ataxia evaluated over a period of 13 years in Sheffield, UK, 101 of 215 patients with idiopathic sporadic ataxia had serological evidence of gluten sensitivity.
So just because I don't bloat like a rotten pig when I eat crumpets, doesn't mean it's not having an effect on me..mmmm.