Yesterday I had my second appointment with Dr.M. It was a discouraging visit. She seemed surprised that I wasn’t feeling better after 3 weeks of new antibiotics…surprised in a “You should be feeling better!” way that felt almost accusing to me. But then, she decided to hold off on treating for Babesia for another six weeks, even though she still really seems to think I have it, because my test results came back negative again. (So did my tests for Bartonella, for which she is currently treating me, and she told me at my last visit that the Babesia tests weren’t very reliable…but I didn’t have the fortitude to push those points after I asked one question that she blew off.) Instead, she is going to have me double my minocycline dose and wait another 3 weeks. If I’m not noticing any change by then she’s going to have me stop the tinidazole and azithromycin and add ciprofloxacin, 500 mg twice a day.
I'm not sure what caused this change in treatment plan. Maybe she wants to exhaust possibilities for treating one coinfection before she starts treating the other one, to avoid confusion? Maybe she thought the Bartonella would be gone after a month, and she was never planning to treat both at once? I thought she was… so I wish she had clarified that better, or that I had been clearheaded enough to ask. I did ask her if it was possible that she was using the right antibiotics, but that my immune system was too compromised for them to work properly, and she said yes. She wants me to try taking transfer factor (bovine colostrum) to boost my immune system.
Next I asked her if she could recommend a GP experienced in treating chronic Lyme patients to whom I could transfer my general health care. I explained what had happened with my current GP. Her response was that she didn’t know of any one else, and (said with a laugh) that patients like me were family physicians’ worst nightmare and that even she wasn’t sure what to do with me. This made me want to burst into tears…or invective…but I was too tired.
I told her that the depression and sleep problems had gotten worse, and mentioned that my therapist had referred me for a neuropsych consult, but that the neuropsychiatrist was hesitant to prescribe anything for me. She suggested trazodone. She was willing to write me a script, so I took it. She said to take it on its own about an hour before bed (i.e., without Lunesta, although she said the two can be taken together). I tried that last night, but it didn't work -- got dizzy, and my blood pressure dropped to 90/54, but I still wasn't sleepy. I ended up taking a Lunesta pill at around 1:30 AM. I think I was asleep by 2:00, and I slept till almost 9:30, when a hang-up call woke me up. I feel hung over, so increasing the dose probably isn't going to be an option, but hopefully it will still help with the darkness that has taken over my brain. I might try taking it earlier in the evening, to see if that helps with the hang-over effect.
The last thing I asked her about was a weird rash that appeared on my legs around the time I started taking the azithromycin and minocycline. It hasn’t been itching, so I decided just to wait until my next scheduled appointment to show it to a doctor. She said it was weird, that it didn’t look like a fungal infection, and that I should go see a dermatologist. I called one when I got home, and they had a cancellation for this afternoon.
Oh, and she commented that my Vitamin D levels were low -- this, with me taking 2450 IU per day.
So that was today…plus diarrhea that broke through my current dose of Lotronex, nausea and nasty gut pain, and having to ask my helper politely TWICE (once each way) to please stop chattering to me as I wasn’t feeling well.
So…some good information, BUT: I am so tired of being blamed when I don’t respond to treatment the way I’m expected to. I am so tired of being told I’m complicated. No, I’m not complicated, my illness is. I’m actually pretty simple -- I’m a sick human who wants to feel better. Do my doctors think I’m resisting on purpose? It is painful, hurtful, frustrating and many other things to have to put up with blame and offhand rude or inappropriate comments almost every time I go to the doctor in order to get help. Who wants to be "every doctor's worst nightmare"?
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