Hello readers! I’m back from my trip to sunny California where it was cold and rainy for most of the time. Being British, I’m used to rain and it didn’t bother me too much although my poor partner did end up walking around a fair bit with soggy feet. This is a long-ass post as I wanted to review the clinic properly in case anyone wants to know the nitty gritty of it. If you’re not that interested and just want 1 line on it – It’s awesome. End of.
Anyway! The clinic’s called Gordon Medical Associates and is located in Santa Rosa. You can google them to find their brilliant website. This is what I learned about California (San Fran especially), there are many hippies and health conscious people, there are more gluten free, non GMO, non MSG etc shops than I’ve ever seen before put together. There are also more runners in leggings and trainers than I’ve ever seen. So it makes sense the clinic is located in California. Also California is one of only a handful of states where Lyme treating doctors are protected legally. Other states explicitly have a law to protect them, whereas California has a thing that allows doctors to treat outside of established medical practice as long as you agree to and sign a piece of paper saying you understand it’s alternative. It’s genius and the UK needs the same! It means doctors are free to treat you in a way that they think is best, rather than having their hands tied by guidelines – which for Lyme and associated diseases, are just plain wrong.
To put this into context, this is my third private clinic, outside of the UK’s NHS. The first was Breakspear in the UK, the second BCA in Germany. GMA seem to specialise in us medical refugees, the patients other doctors don’t know what to do with! They understand Lyme and co really well, but also everything else that goes along with it, and I mean everything! They know all about complex thyroid issues, heavy metal poisoning, mould, everything that can contribute to complex illness like CFS/ME, MS, dementia, auto immune conditions, the works.
GMA is located on an industrial estate of sorts, a lot like Breakspear. It was raining when we got there and we’d allowed plenty of time for getting lost. Which we did do… in fact we got lost and had to turn around and ended up driving on the wrong side of the road as Wendy was still getting used to driving on the right. Cue me screaming WRONG SIDE! And us swerving to the right. Luckily at 9 am on a raining Tuesday morning there weren’t any other cars about.
The reception is suitably hippy. There’s ‘relaxation’ music playing and an indoor water feature made of stone and bamboo. I was wondering if I’d be asked to remove my shoes in full Buddhist tradition, but I wasn’t, much to my disappointment as I had brand new novelty socks on.
My new doc, is really approachable. Not at all like all the previous (30 or so) doctors I’ve seen. She’s just normal, you can talk to her, she laughs at my jokes, she’s just ‘normal’! Most doctors are so intelligent or just plain lacking in social skills that it’s like talking to a robot. She’s a Naturopathic doctor (ND) The system in the US is different to the UK, ND’s have the same amount of training as medical doctors (MDs) but the last year or two is spent learning natural medicine rather than specialising in a medical field like MDs do. NDs therefore can prescribe conventional medications just the same as MDs but have a more holistic approach. She likes to mix and match prescription and herbal medications depending on the patients needs. And before you ask, yes, herbal stuff can be just as strong and work just as well, if not better, than prescription medications. I’ve tried a few and tend to react exactly the same to like for like herbals and prescriptions.
I very much feel that GMA’s approach is the best I’ve seen so far. They don’t do one standard treatment plan for each disease or issue, unlike Breakspear to an extent, and definitely BCA who have a one size fits all approach. They really take on board all your individual problems and make a plan to suit you as an individual.
My doctor is the first I’ve seen to really understand my gut issues, even though as Lymies go, my gut issues are incredibly basic. She’s been the only one to spot that I have low stomach acid which is a major contributing factor, I didn’t even realise this myself, despite knowing a fair bit about Lyme and associated diseases and problems. The HCl pills are already working wonders!
She’s also been the first doctor to diagnose me with babesia. Babesia is a common co infection which is incredibly difficult to test positive for due to the number of strains and a bunch of other factors. I’ve always believed this is my biggest issue but previous docs have gone purely by my negative tests. Without me pushing the babesia issue, she came to the conclusion on her own based on my symptoms that babs is my biggest issue. She also thinks a lot of the crazies (mental health issues) that I’ve always put down to Bartonella, are actually Babesia induced, hallucinations being a prime example.
She is the first doctor who I’ve actually talked to about the crazies in all their full technicolour glory. Other docs I’ve started to talk about it and they look horrified or confused and I’ve just given up. She looked like she’d seen it all before and wasn’t phased at all. She also displayed no hint whatsoever of going down the ‘well ALL your physical symptoms must be due to your mental health problems then’ like NHS docs do. NHS docs at the mere mention of crazies say you’re depressed and give you anti depressants like they’re sweets. I’m not even depressed!!
Bartonella was a given despite my negative tests, due to symptoms alone, and then she saw the picture of the bart straie rash I had on my leg… she asked me which leg it was and I said my right, and she said ‘ah the same leg as your joint problems’. That was a penny dropping moment for me. I’d never connected them before, I had read that bart can sometimes cause joint pain but because one of Lyme’s hallmark issues is joint pain I’d just put it down to that. But now I think about it, it makes way more sense for my joint pain to be down to bart because all my Lyme neuro symptoms have 99% gone now, and yet the joint pain remains. Also, joint pain was my first ever symptom at the age of 13, and I’ve suspected I’ve had bart since my teens.
The whole consultation was a series of penny dropping moments for me. Despite being on the treatment merry go round for 18 months and spending all my time online immersed in the Lyme world, there were still pieces of my jigsaw that I couldn’t get into place. She put all those pieces together for me and it was like I could suddenly see the picture of my illness properly for the first time.
The tests she wanted doing were really sensible, unlike other clinics where the testing bill comes with three zeros, this lot only came to $300. (About £200). I was gobsmacked. She didn’t want the Lyme tests repeated (I already had my Igenex positive serology and LTT positive from infectolab), no point testing for coinfections again (I already had 2 negative bart and babs tests, and a bunch of other positives). She only wanted tests that would actually change the way she would treat me, which is HOW IT SHOULD BE. Unlike at other clinics where they want all kinds of tests to ‘prove’ something that has no bearing on your treatment anyway. I’m looking at you Breakspear….
She talked about the general plan for the next few months, other docs don’t tend to do until they get the test results back which is annoying as you come out of an expensive consult none the wiser as to what’s going to happen. The plan is to really concentrate on healing my gut first and foremost. So I have fluconazole every other day for an anti fungal (praise the lord, no other doc would hand over the fluconazole bad boys “Oooooh it’s too liver toxic” they’d say. (Nevermind that the candida it’s treating is also liver toxic, and nevermind that my liver tests have never once been out of range, ever, even when they were expected to be while on IV meds). So yeah, I have fluconazole, a GI repair mix of things like glucosamine, glutamine, some enzymes etc etc, a bottle of gut calming stuff to stop it getting so angry at food, and some pancreatic liver enzymes as judging by my odd looking tongue apparently I have spleen issues. I was mega dubious about this until I got back and started googling. Turns out she’s right about that too!
Once I’ve successfully introduced all that (I only introduce one thing at a time so if I have a bad reaction, I know which thing has caused it, also GMA are the only clinic so far to have advised me to do this. I had previously found out the hard way myself.) Once I’ve introduced all that I’m starting on the lymph detox, as she thinks my chronic sore throat could be a blocked lymph node, I’m not 100% convinced on this, but it’s worth a try as absolutely nothing else has ever worked! Then I’ll introduce mega slowly the babesia treatment. I’m starting on the gentle one (MC bab) as she thinks I’m going to react severely. You start at a mega low dose and work your way up. Then I’ll go onto the stronger stuff (A bab). After that I’ll be giving the bart a good bashing with A Bart. She thinks I can go straight onto the strong stuff with that.
Once my gut is in a better position she thinks I’ll be able to withstand the prescription meds for babs and bart better. Also, starting on the individual herbals means she can ascertain how I react to each so she’ll know which prescription meds will be best later on. It’s all very sensible and exactly how I’d do it!
Which brings me to COMMUNICATION. Breakspear were ok at communication, not great but ok. You could talk to patient liaison whenever you wanted, and arrange phone appointments, which was satisfactory. BCA were AWFUL. Holy crap they were awful. It would take me about 10 emails to reception to actually get a reply, it once took 5 weeks to get an urgent phone appointment, I would be stood up for phone appointments, or they’d just be 4 hours late. I complained about it to the head honcho and of course was ignored.
With GMA it’s a whole other world. A whole other world I tell you. You can email your actual doctor, and the assistant replies within 1 working day with what the doctor said. They WANT you to email them all the time with updates as to how you react to different meds and how you’re doing. I’ll be having regular phone appointments, which from other people I know who are patients there, are easy to arrange and they call on time.
The only downside is that they’re on the other side of the world. The jetlag is a bugger. Going there is ok, I just went to bed super early and kept waking up at 5am. But coming back…. total nightmare. I didn’t sleep for 27 hours straight and had all the exhaustion of a long flight. Now I’ve had two 12 hour sleeps in a row and although I’m less tired, my body clock is still on Pacific time!
I’m worried about the faff of getting prescription meds filled over there and getting them shipped over but there are lots of options for how to do it, and I know lots of people who do it so I can pick their brains.
About the costs, it didn’t cost nearly as much as I thought. I had always dismissed going to the US due to cost, without even looking into it. (FAIL!) I wasn’t well enough to have gone before I don’t think anyway, but I am shocked at how little it actually cost. The flights are cheaper if you go out of the summer season. I found that the flights leaped up in price in April, which is why we went at the end of March. I recommend staying in a AirBnB place (google it), as for the price of a standard hotel room you can get a whole apartment with a kitchen so you can prepare all your own food, great for saving money and great if you have a weird diet like me. My doctor’s consult was $510 I think, which is quite pricey, but the tests were really cheap. Herbal medication tends to be cheaper than prescription so you can stick to that route if you want to. Phone appointments are much cheaper, I’ve forgotten how much, but pretty standard compared to worldwide private clinics. You only have to go in person once a year, and if you make a holiday out of it, it’s not too bad. This year we went to Yosemite national park and mooched about San Francisco for a few days before coming home. Next year we plan to see Salt Lake City, Las Vegas, the grand canyon, hoover dam etc) and maybe LA.
Initially my partner wanted to choose a different doctor, but I chose her on a gut instinct. We came out of the appointment and my partner said she was definitely the right choice! When I got back to the hotel that night I felt, and still do, totally unworried. For the first time in my Lyme treatment I feel like the doctor knows more than I do…! (How it should be!) and I don’t have to be googling everything, second guessing, or pushing them in a certain direction. I feel that I can just let go and ‘just’ be a patient, not my own doctor. How it should be! I feel like they’re not going to give up on me if it doesn’t go to plan, like other doctors have in the past. How it should be!
There are no quick fixes in Lyme disease (and especially not in co infections), unless you catch it very early! But for someone as complexly ill as I was when I started out, I’ve already come a really long way. I’m grateful to BS and BCA for getting me well enough to be able to travel to California. To see my new wonderful doctor and to be able to be a tourist and enjoy California as well. But they wouldn’t have got me all the way better. I’m just not willing to settle for 50% better, I want 100% or as close to it as possible. I want to be able to have a career, do sport if I want (well, maybe a yoga class hehe…) have more kids, all the things other people take for granted. I think GMA could get me there.
Maybe GMA wouldn’t be right for everyone, but I think they’re perfect for me and where I am with my illness. I’m definitely in the second half of my recovery, which is usually the hard part to actually make progress through.
I think I’ve pretty much covered everything! Sorry it’s so long! If you have any questions leave a comment and I’ll get back to you :D
Edited to add – I’ve been told naturopathic doctors can’t prescribe conventional medication in all states. They can in California, but if you’re planning on seeing a ND in another state, check before you book!