Apr 162007

The second doctor visit was a huge disappointment; especially since this one was supposed to be a “Lyme Specialist.” Also, he really enjoyed to hear himself talk, and it frequently involved sports (side note: I could care less about football, hockey, etc.) – I think he said 30-50 words for every word Eriksgirl+me said. He said that he tries to take a middle of the ground position in the “Lyme wars” (my phrase); but it is obvious he falls in the easily tested for and easily treated camp. Some tidbits from this visit:

  • The rash pictures I showed him he wrote off as just a weird rash, and that the rash is not Bartonella (WTF?!). He repeatedly said that the EM rash does not come back, even though he was repeatedly told that we thought it was Bartonella (also, I think there is a strain of Lyme that affects the skin, and the EM rash can come back). He noted on one picture that he was most interested in this one circular “rash”; since that would be more like an EM rash (ignoring the fact that I would have had Lyme for years at that point – but with no clinical history [see below] that might be a little hard). I decided to skip the detail that the “rash” he saw in that one picture was actually a compression mark from my working on the floor assembling an entertainment center.
  • He also wrote off the Bartonella rash because I tested negative for it on a blood test. He views those tests as very accurate. So Bartonella, and other co-infection, tests are accurate, but the tests for Lyme suck. Right. Furthermore, I thought I had read somewhere that the Bartonella test would be more accurate if you sent a tissue sample from the rash area; of course “more accurate” means that the test is not 100% accurate. Of course it is possible a round of antibiotics I took last year took care of the Bartonella since the rash hasn’t returned in quite a while.
  • He completely wrote off the CD-57 test. I can understand not using it as a diagnostic tool for Lyme, but he viewed it as basically worthless. His point was that until they can definitively prove nothing else lowers that value than he won’t use it for anything. I think a more balanced approach to the test would be the best policy, but what do I know.
  • He absolutely could not get over the Multiple Sclerosis diagnosis. He repeatedly commented that if you were diagnosed with MS by spinal tap and lumbar puncture (I was) than you have MS (as opposed to MRI alone). He tried explaining MS, and demylination, to me (did he really think someone treated for MS for 4 years didn’t know what the MS did to the Myelin?!); but it was clear I had a better understanding of MS than he does. Furthermore, the test run on the spinal fluid was testing for Myelin, and I do not think it would be surprising to find Myelin in the spinal fluid when there is any kind of brain infection since the infection would involve brain/spinal tissue.
  • He asked about current symptoms, but never took a clinical history. This borders on negligent. Because of this he never got the history of entering stage 2 and then stage 3/chronic Lyme. He never got an expiation of when I though I got Lyme. Lyme isn’t the flu; when treating a chronic illness I would think that clinical history is very important.
  • I can’t remember how it came up, but I asked about cell-wall-deficient form of Lyme. He said how can a cell live without a wall (true, but it is a different type of wall that exceeds my understanding of cell behavior). Eriksgirl noted about the CWD Lyme living within other cells. He completely wrote that off, and in general knew nothing about L-Form bacteria (including their existance).
  • I think he wanted to write me off completely, and he never said I had Lyme. He had to keep coming back to the C6 Peptide, but I think he wanted to write that off as a false positive too.
  • His treatment philosophy was to “let sleeping dogs lie” (He couldn’t remember the phrase, but tried several variations). I take this to mean that if there are no symptoms then there is no reason to treat. I am more of the opinion that you treat until there are no more herx reactions.
  • He listened to my chest, but never caught the Mitral Valve prolapse (I’m not sure he listened to my heart, so who knows what he was listening to). He also never checked to see if the Lyme had affected other organs (e.g. liver, spleen). Overall, it was a shoddy exam.
  • In the end I left with a 30 day prescription for 100mg Doxycycline, and if I had problems at the end of the 30 days he would give me another 30 days. I don’t know what would be done after 60 days. When talking on the phone he had said 4 months of IV antibiotics. I can only assume he thought all my problems were MS, and thus not really worth treating me.

Overall, this was like seeing the guy who graduated last in his class from medical school. Of course this doctor is the one who recommended MDLab which got my diagnosis so he isn’t all that bad. I’m sure Eriksgirl will have more to say too.


  11 Responses to “Dr. Visit #2”

  1. Fake it till you make it? Urgh … sometimes I wonder what happens to doctors who graduate last in their class.

  2. sounds very frustrating, to have issues that are not clearly cut and dried, like a broken leg or something. i admire your keep-at-it attitude. maybe get all of these “doctors” together for a conference call? let them duke it out. of course, that might be even less productive. i wonder how many of us now are revisiting that “is it lyme disease?” question….

  3. This guy sounds like some of the bozos that I have run into in the medical profession. I will spare you the stories since it’s your blog on not mine 🙂 I admire your level of education on this. Wishing you the best Erik. Stick to the guns, and kudos to Eriksgirl too. She sounds like a great ally to have on your side.

    ps. The guys last in their class (I think) just go into private practice.

  4. Stick to your guns and keep these doctors on your case. There’s nothing wrong with you helping to educate a professional. Especially if you can help solve a mystery. And when it comes to medical conditions these days, every thing seems to be relatively mysterious!

  5. Mouse,
    Yeah, and the joys of being diagnosed with a syndrome – though I suppose that is changing for me. I guess this is what I get for having high hopes for a doctor. Curse my optimism!

  6. Wow Erik,
    I haven’t checked in in a while- Lyme? Wow. I did read some about that when I was having all the weird syptoms and it does sound like one of those tricky things that is misdiagnosed all the time. The Dr. sounds like a complete slacker, how frustrating! Keep up the good fight!

  7. Gosh Erik, I’m so sorry that didn’t go well. I so understand how frustrated you must be.
    It’s the so close and yet so far because of dumbarses who don’t want to TRY!
    I really hope you can find someone who truly wants to help!
    Good luck!!

  8. It can be a challenge to stand up to doctors, but it can be worth it. For me it paid off when my son was diagnosed with cancer several years ago. My persistence kept him from an unnecessary surgery. A surgery so the doctors could learn about his rare cancer.
    I also work in group homes for disabled and must advocate for them regularly as doctors seem to skim through the appointment. I’ve had a psychiatrist say “he’s doing well, lets cut back on his meds”. Well he was doing well because they FINALLY got the meds right! My opinion was disregarded and he steadily declined till he was unable to live in the community. 🙁 .
    Don’t give up, you’ll find an answer.

  9. lyme can mimic ms!!!! stupid doctor

  10. Hi Eric. I’m in Colorado Springs too and just newly diagnosed a month ago. I’m curious which doc you saw… This doc doesn’t sound competent at all! I’m also on Rebif and have another 3 injections left on the 22mcg, then it will go to the 44. No fun, as I’m already having flu-symptoms and its wiping me out.

  11. Hi, just came across your blog while googling “bartonella rash.” Your visit with the “lyme doc” sounds disheartening. Is he ILADS-affiliated? If not, he’s not truly a “lyme doc,” in my estimation. I’ve met a number of folks who had been diagnosed with MS and it turns out they had Lyme and co-infections. Didn’t get better until they started a Lyme treatment protocol. Best wishes to you.

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