Wondering about my LLMD (Agmaar, are you still seing him?)

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!

Nicky,

I'm so sorry you're going through that. I think most of us that are seeing out of state doctors are in the same boat. My LLMD makes me do bloodwork and pretty much everything besides Lyme, with my GP that I have here. I think the best an LLMD can do, is try to treat Lyme the best way that they can.

As far as Levaquin goes, I've taken it many times and never had a tendon rupture. I think most doctors think that the muscle pain is a herx. Maybe the person you are talking about, didn't explain their symptoms well. I'm just guessing of course and trying to see both sides here. I don't know your doctor so I cannot make a judgement.

It's very hard for an LLMD or any doctor to treat someone over the phone, that's why it's important to have a GP. Can you try finding another one maybe?

Hi Nicky -

I've been in lurker mode for a while - trying not to focus so much on my health issues.  I actually see Dr. M in the Seattle area.  And I believe there is also a naturopath that trained with a LLMD. 

I've been really happy with Dr. M.  I'm on rifampin for my chronic Cpn infection and I think it's harsh stuff.  Yeah ... it's well known for being hard on the liver and we do cmp/cbc tests about every two weeks.

There are a couple of good options for you in the Seattle area.  I'll post more tomorrow when I'm fresher.  And I'm still a little numb from learning today I was approved for SSDI

Nicky, I believe I saw the same doctor as you and I had the same experience. It is no coincidence. After traveling over 1000 miles to see him, he did not do a complete physical. Just felt behind my ears for swollen glands and thumped my knees for reflexes. I never got out of my street clothes. He diagnosed me based upon the questionaire I sent to his office by email. There was really no need for me to take the trip except to cover him giving me the abx. He requested $600 in lab work which he never looked at. I know this because I found out the hospital where the work was done never sent it to him.

He takes a long time to return calls when I had problems, up to a week. He gave me levaquin never mentioning the fact that I was at very high risk of developing tendonits, being over 60. When my arm began to hurt he said it was a herx encouraging me to continue taking it until my tendon snapped. Luckily I had enough sense to stop the levaquin without his instruction as it took a week for him to respond. I also had a reaction to amoxy which made my tongue sting and burn and swell so that I could hardly talk. He seemed to think this was a herx rather than a drug reaction. I quit the drug and informed him. Every call cost me at least $100 and I might as well have diagnosed and treated myself. His notes sent to me after telephone calls were never proof read and hard to interpret. He never prescribed liver tests. When I could no longer take abx because I had developed a horrible chemical sensitivity after levequin, I asked if he would give me herbs. He refused saying I would have to make another 1000 mile trip to see his partner.

Isn't there another LLMD in Seattle?