3/20/2007 Edit: Decided that there was no value in listing the doctor’s name so edited the post to just using a pronoun for the name
Extremely disappointed!!! I did not expect him, or any doctor in Texas, to be an expert in Lyme, since it is a rare disease here. What I do expect is that as a doctor you either do your homework on a given disease (Lyme), or you refer me to someone who is familiar with the disease. I can even accept that you would have to follow-up with me after consulting with some reference materials and other specialists. Possibly, he may be an acceptable doctor with diseases he is familiar with; just not with diseases he doesn’t. What I really object to is his radical unpreparedness and blissful ignorance for my case. Overall, I was left with the impression (based on a general attitude) that he is not enthusiastic about his work, and thus does little reading of journals, etc. to stay at the forefront of his specialty (I would think that my case could add a little spice to an otherwise same old routine). Some tidbits from Friday’s visit:
- 30 minutes late for the appointment (trying to ignore his previous indiscretion, and then again.) He was late because he was reviewing my chart (I was the only appointment today), and he arrived minutes after I did. I would expect an infectious disease doctor to review his upcoming schedule so he can prepare for any diseases that he might not be that familiar with, and so he doesn’t look like an idiot when talking about the disease. He obviously did not want to proceed down that route, and would prefer to look like an idiot. He has had my lab work and back pictures (Bartonella Rash) for two days, and my suspected diagnosis (Lyme) for a month. Let’s wait until the appointment to quickly read over the chart, and any old textbooks I have laying around.
- In his first few sentences he made it clear that he had no idea about the C6 Peptide test, and the test’s significance. He said there are lots of “Mom and Pop labs” that do some weird tests. Of course this is not a weird test, and has been suggested as being the new “Gold Standard” for Lyme (although with criticism). Eriksgirl tries to explain the test with little success. He said he needs to call the labs director so that he can figure out what the test revels (like maybe it’s a positive test for Lyme disease!). Of course this should have been something he did before visiting with me, see #1.
- The CD-57 test was also mentioned, and he said that has nothing to do with Lyme. Eriksgirl did not go into a description of why this level is important in assessing efficacy of treatment. Again see #1.
- After discussing my symptoms, and that I am self-admitted in a light period at the moment, he thought there was basically no reason to think that I have Lyme and to question the diagnosis of Multiple Sclerosis. This was even after reading aloud the referral letter from my neurologist saying that there was “compelling” evidence for a potential Lyme infection, but an infectious disease specialist would have to make that determination. How we could see the exact same text two different ways is a mystery to me. He went on to say that a neurologist should be able to diagnose lyme disease based on the neurological symptoms (I guess so much for Lyme being the great imitator).
- He went on to ask what I wanted to achieve by being treated for Lyme (e.g. take high dose antibiotics). Apparently the wrong answer was to not have Lyme. He said that treatment of Lyme is a clinical one (and to some degree I do agree, but with the CD-57 it is less so; secondarily I would think you would rely on diminishing Herxheimer reactions), and without anything to treat there are no objectives. No clinical objectives = no reason to treat with antibiotics. He thought it was better to treat the Multiple Sclerosis rather than worrying about Lyme.
- He went on to offer a 3 week treatment of IV antibiotics to set my mind at ease. Eriksgirl noted later that apparently I am a hypochondriac, and he will treat my neurosis with 3 weeks of antibiotics to make it all better. I declined. (3 weeks of antibiotics would be insufficient for chronic Lyme anyways, which furthers my assessment that he doesn’t have a clue about treating Lyme). Secondly, who “hands out” high-dose anything if you don’t think the patient needs it?
- Eriksgirl mentioned that we will be going to see a Lyme specialist in PA for a second opinion (can he be considered a first opinion?). He noted that he thought it was a “waste of money.” I understand his hubris because he is an such an expert in Lyme, knows what all the tests mean, and the proper treatment methodology for chronic Lyme so there is no need for a second opinion from a Lyme specialist (especially no need to see the doctor who recommended the lab and all the tests that got run by that lab).
- I also noted that I was referred because of the recurrent rash that occasionally appears when when I am having problems (but definitely not always). He said that Lyme does not have a rash that appears with exacerbations; of course that was after I told him that it was (most likely) a Bartonella rash. He dismissed the rash as being Bartonella; noting that Bartonella does not have a rash (or so he seemed to indicate), and if I had Bartonella that I would have gotten over it by now. He also noted the Bartonella is not a tick borne disease; but instead is the disease of cat scratch fever. In the end he never suggested any cause for the rash simply leaving it that it was not a Lyme induced rash.
- He also noted that Lyme would not cause abnormal MRI’s (e.g. lesions). The insinuation was that abnormal MRI’s would be one more indication that I have Multiple Sclerosis, and not Lyme. This was despite the fact that my neurologist referred me to him for this assessment (and the neuro personally mentioned that if I have Lyme I could be cured; meaning I was misdiagnosed).
- He also noted that the treatment would be with Penicillin. That sounds like a fine choice, but from what I understand I will need to be treated with two antibiotics because an antibiotic that has good tissue penetration does not typically have good blood-brain barrier penetration and vice-versa (The International Lyme and Associated Diseases Society, p.6, Section 10); something I would expect and ID doctor to know. Then there will probably be yet a 3rd antibiotic to treat the Bartonella.
Endnote: Going in, I did not have high expectations that he would be able to help with the Lyme because of the rarity of the disease in Texas. It was a long shot, and it was worth a try. I was simply put off by his gross ignorance, apparent lack of interest in my case, and unwillingness to learn more about the disease. Overall this experience was for the best because I have been working on a list of questions to ask the doctor (which I did not have for the original meeting, so bizarrely it worked out for the best that he canceled) so I will be better prepared for future visits.