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

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Nicky D
Regular Member

Date Joined Jun 2009
Total Posts : 361
   Posted 12/7/2009 2:54 PM (GMT -7)   
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!

Regular Member

Date Joined Sep 2009
Total Posts : 233
   Posted 12/7/2009 8:46 PM (GMT -7)   
My own experience with "alternative" doctors is that they are more disorganized than traditional doctors. Maybe it's just that they do more themselves and no one is cleaning up after them...

Veteran Member

Date Joined Mar 2009
Total Posts : 4717
   Posted 12/7/2009 10:49 PM (GMT -7)   

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?
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**


Co-Moderator Lyme Disease Forum

Veteran Member

Date Joined Oct 2009
Total Posts : 699
   Posted 12/7/2009 11:06 PM (GMT -7)   
Nicky, if you don't feel confident in your doctor I think it wouldn't hurt to see if you can find someone else in whom you could place your trust for Lyme treatment. I believe in keeping informed and being an involved patient, and I approach my appointments as a collaborator and that sometimes leads me to ask my doctor about other approaches to treatment, but I have a basic trust in the knowledge and professionalism of my LLMD. If I didn't I would have a difficult time not always second guessing everything he recommended and that would bother me. I hope you can find a doctor that feels right for you so that you don't need to be concerned about whether or not you are getting the best treatment.

I don't know anything about when someone should have blood tests for what meds, but I get a blood test every month to test for liver and kidney function (and other things). I got the impression that my doctor does that with patients who are on heavy-duty antibiotics, etc., that could cause a problem.

I have Lyme; it doesn't have me.

Regular Member

Date Joined Jan 2009
Total Posts : 376
   Posted 12/7/2009 11:39 PM (GMT -7)   
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 smile
Lyme, anxitey, depression, chronic C. Pnuemoniae
"... expect the unexpected ..."  (O. Wilde)
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)

Nicky D
Regular Member

Date Joined Jun 2009
Total Posts : 361
   Posted 12/8/2009 10:28 AM (GMT -7)   
Hi Amgaar-

Sorry- I guess I was confused. But congratulations on the SSDI! You must be so happy! Yay!!

I'm a little less brain foggy than today than I have been recently, so I've been able to think things through a bit better. The doctor I see isn't an alternative doctor- he works with a naturopath, but he's an MD. Anyway, I think I was just so foggy that when I got that email i freaked, when it wasn't really necessary. I have an in-person appointment with my doctor coming up, and I'll see how things go. I might also make an appointment with my old naturopath, just to get her opinion (she has other patients who see the same doctor). I think not having a GP is my problem- and maybe not so much my LLMD.

I'd love to find a new GP, but it's kind of tricky. I'm kind of living in two places- the city where I go to school (Edmonton), and the city where I work when I'm not in school, and where I want to move back to (calgary). It makes it hard to find a GP- since I can't see one in Calgary when I'm in Edmonton, and there's such a long wait list in Edmontom that getting one here doesn't make sense. But I should probably find a really good one in Calgary, and just get myself put on the wait list.

Veteran Member

Date Joined Feb 2008
Total Posts : 900
   Posted 12/10/2009 3:59 PM (GMT -7)   
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?
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