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 www.pharmacychecker.com 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.