Posted 12/7/2009 3:54 PM (GMT -6)
I've been having doubts about my doctor for a while- not that he doesn't understand Lyme disease, but just that he's not as good as I originally thought. He only ever asks about how I feel overall. So, if i feel worse (more tired, in more pain, on a scale or 1-10), what he does is add in more supplements, and keep on the same antibiotics. It doesn't matter if I am just more tired, or fainting/collapsing- it gets treated the same way. His notes are also very disorganized-he faxes me a copy after every appointment, so I don't have to write things down, but my notes are always better than his. And he hasn't done a single blood test since I started treatment 4.5 months ago. (and I thought one of the drugs I was one (Rifampin, Ceftin or Bactrim, don't remember which), required regular blood tests...but I got that information from a Nurse who has been retried for a long time, so it might be wrong).
Anyway, now I don't know what to do. At first, I thought that I just expected too much for him- all he could do was treat for Lyme, and so it wouldn't matter what my specific symptoms were, since he could only treat the big picture anyway. But it's getting increasingly frustrating to go to him with a problem, and get nothing from him...for example, ever since I started treatment, I've been having huge problems with near-passing out/dizziness/low-blood pressure like symptoms, but all he has never once actually addressed the problem. And my family doctor no longer sees me, and the drop-in clinic has my file from before I got diagnosed with Lyme and thinks I'm crazy, so I can't get help from anyone else.
I don't even know if there is another doctor I could see, anyway. This doctor does phone appointments (which I can tell you aren't nearly as good as in-person appointments, but I couldn;t afford to fly to Seattle every month), and only makes me fly down every 4 months. He also uses a Canadian pharmacy, so i get my prescriptions covered. I just feel like I'm using him to get antibiotics, but not really as a doctor. I mean, he does pick which antibiotics I get, but that's about it. I also could be over-reacting. I wasn't thrilled with him, but it wasn't until this month that I became worried, because I got an email from someone else I know who sees the same doctor, telling me that they had a terrible experience- eerily similar to mine so far, but worse, because one of his symptoms was tendon pain from Levaquin, and the doctor left him on it until a tendon ruptures. He felt exploited, and was telling me not to recommend this doctor to anyone else.
So now I don't know what to do. I have a very good naturopath in my area I can see, but I wasn't really getting much improvement with natural treatments, and she recommended I try to get on antibiotics. If I found a doctor in canada willing to give me antibiotics (which I didn't), she would have been willing to oversee it, and direct the doctor, since she trained with LLMDs in the US. So, technically, I could use her to oversee my treatment with my current doctor. But that would be really expensive, because I'd have to pay for both out of pocket, and it would be difficult because I moved for school, and am no longer in the same city as her. Or, I could continue with my doctor, and just hope that everything works out.
I would just love to have a doctor where I didn't have to be a doctor myself- and I don't really feel I have that yet. I am still the one who needs to check and make sure none of my symptoms are serious, not him. If Agmaar is still here, I know they saw the same LLMD, and I'd love to hear what they experienced (you can email me from here). It would be nice to know if that other person was just an unfortunate fluke in the repertoire of a good doctor (sorry if that didin't make sense, I'm a bit fuzzy today, and couldn't think of a simpler way to say that).
Sorry this is long...I wasn't up to thinking it out in a concise way, so I just wrote out all my thoughts. Thanks for putting up with me!