OK, since I’ve gotten so many e-mails telling me how much they want me to write more about my experiences with Lyme disease, turns out I do have something for today.
Did you know, for example, that Lyme disease sufferers see an average of 5 doctors before they get a diagnosis?
Sure enough, Doc 5 is the one that just put me on more antibiotics, because, frankly, he knows something about the disease, unlike Doc 4 who didn’t and didn’t think I even had Lyme.
I thought it might be interesting to provide a brief summary of my Doctors.
Doc 1 wasn’t even a real doctor. She was a physician’s assistant, and she prescribed an antibiotic that wasn’t appropriate for Lyme, while we waited for the test results which were negative because she tested me too early for antibodies to be present (as it turns out). This while she told me emphatically (contradicting what I read, even if the test is done at the appropriate time) that the test is never a false negative. If I had actually been treated effectively at this time, I would have saved a lot of time and money (but not experience).
Doc 2, after I dropped Doc 1 is now my new general practitioner. She said my symptoms didn’t fit anything, and couldn’t find my Spleen, which had been hurting me still 5 weeks after I first started seeing her. But she did order the Cat Scan which revealed that it was enlarged, eventually, and she is responsive and listens to me and defers to experts when she doesn’t want to make a mistake.
Doc 3 was the neurologist doc 2 referred me too, before we knew it actually was Lyme disease with whom I spent the most money, and who finally ordered another Lyme test, after I came in with a list of possible illnesses that I could have, based on my own research, because no one else was getting anywhere.
Doc 4 was the infectious disease specialist that both doc 2 and 3 referred me to for his expert opinion on Lyme treatment, after the test came up a bit contradictory, though he personally had only one confirmed case in his career and declared that I didn’t have Lyme with the certainty we often see in evangelicals talking about evolution. In response to information I had brought up from my extensive research (which came from a medical doctor who had much more experience with Lyme than he), he spoke words reminiscent of said evangelicals. "It’s all theory!” he said. (His bio, in mentioning that he does Christian mission work, supports my profile).
Doc 5 was the infectious disease specialist I sought out to replace Doc 4. I got the referral by calling my dad, who called a pathologist friend of his who researches at Yale, which is located in a hotbed of Lyme activity, near where I picked it up, who asked a colleague of his for a recommendation in Atlanta who gave up Doc 5, who, it turns out, worked in Connecticut, when it was first being discovered, alongside the doctor who NAMED it.
That was a recommendation I could work with.
And Doc 5 said I definitely had Lyme. I asked him on what basis he came to the conclusion, the tests, or the history, or the symptoms, and he said, “ALL OF IT. You have classic Lyme symptoms, with classic incubation periods. Everything fits!” Although I had by this time completed one round of the antibiotics normally prescribed for early Lyme, from the Doctor who didn't think I had it, he prescribed me another round to be safe because mine had moved, at this point, beyond the early stage.
(for those of you who don’t know, Lyme Disease, a tick born illness named after Old Lyme Connecticut, where I visited my parents this summer and got bit, is much harder to cure the longer it goes without sufficient treatment).
His office used all of the latest technology, a cool wrist band automated device that you put on to take your blood pressure, a thermometer that you wave in front of your forehead to get a temperature (very "bones" if you know Star Trek), and when they take your blood, they give you a card with instructions on how to pull up the results online.
Ant they did take blood - to check for two common coinfections that often accompany Lyme disease.
The only thing they haven’t figured out is how to get said blood without sticking you, and the nurse that did the sticking had an interesting quick jab technique the likes of which I had never seen, and which she had to execute three times before it finally worked. I had to watch while she adjusted the needle in and out, trying to find the blood (I thought maybe I had run out). She had apparently gone too far, and only as she was pulling the needle out in resignation did blood start to fill, but by the time she discovered that, she ahd removed the needle, and she had to stick me again.
She said she was usually a one stick nurse, but I wonder what she meant by usually. 51% of the time, perhaps?
Third time and second arm was the charm.
To top it off, I have a physical (long time ago scheduled) with Doc 2 on Monday, and I was kind of hoping to have some veins left for sticking. I’m tired of being stuck.
So there you have it. Because you asked for it (but not really).