Had a very interesting week. In the program Xian's attending they got a chance to see her when she seemed to be in headache mode (poking at her eyes, holding her head, under the blanket of 'fog') and the following day (after a couple of doses of ibuprofen) when the fog lifted a bit. I think it's becoming apparent that there's some internal process going on and at least they are observing it.
However, the really big breakthrough started when I began reading more about lyme. The two links sent to me in the last set of comments got me started on a bit of a trail. (I'll post them here just in case anyone wants to take a look).
The descriptions of the neuropsychiatric manifestations of lyme are probably the closest descriptions of what I've seen going on with Xian of any condition ever mentioned for her, and she's also got a good list of other symptoms regularly mentioned with lyme (night sweats, urinary difficulties, malabsorption/digestive problems, headaches, and more). Also makes more sense in terms of the timeline of her symptoms -- she really was well until abruptly having the beginning symptoms, and those came in mid August, following tick season. I've always figured that she contracted something, as there were really no early clues that she was developing some other sort of condition.
I started looking for lyme stories connected Western Canada and ran across the newspaper article about the local teenager (the Journal URL is long so I'm posting it on a site where it's been pasted) http://lymeblog.com/modules.php?name=News&file=article&sid=1377
I'd first read the article a few months ago and it seemed in many ways similar to Xian's case---but reading it was followed by Xian's metabolic appointment and while I kept thinking about connections to that story, I didn't pursue it further.
A few days I started emailing people -- I still haven't heard back from the lyme doctor or the guy who is the head of CanLyme http://www.canlyme.com/ -- but I've heard they do reply to inquiries and have been very helpful. I reread the Edmonton Journal article and confirmed that the parents were employed by my university. I figured it couldn't hurt to send an email asking if they had any suggestions for us and I emailed Felix Sperling (the father). Well, within an hour I received an email back from his wife, Janet, and after a couple of exchanges that was followed up by a phone call and a visit to her house to pick up a blood test kit to sent to the California lab everyone seems to be recommending. Xian, Rachel and I were there for two hours -- there was another fellow picking up a kit as well. Very, very interesting conversation. I did get a chance to briefly see her son, Ed -- now an 18 year old attending university and who has returned to complete health. Interesting also to hear that though Xian's doctors have all been saying, "We've never seen anything like this," in fact a good many of them were the exact same Stollery doctors who saw Ed, less than two years ago, and who ordered many of the same tests, as well. Both Xian and Ed were investigated for seizures, had an MRI, CT scan, lumbar puncture, spent time being investigated by psychiatry and were seen by the same neuropsychologist, medical geneticist and metabolics doctor. Both had the test for juvenile Huntington's. The differences in investigations seem mostly about their age. Ed was too old for the late onset autism diagnosis so he got labelled with some rare form of early Parkinson's, and there was more focus for him that maybe he was 'faking it'. Another commonality is that his mom and I have both been given the "Munchausen's by Proxy" label (you know, the psychological disorder where you make your child sick to get attention----quite frankly after my experience with the health system anyone who would want to spend more time around doctors has to be mentally ill!! And apparently there's a third teenager locally with a similar set of symptoms. Both boys' families had to fight to get them treated, even with the positive tests -- and while they both got better (and I know at least Ed's family had him do a repeat blood test to see if his lyme had cleared---which it had), their cases are not officially recognized as lyme. The thing that seems puzzling is that you'd think it would be more cost effective to absolutely rule out something like lyme, using a better test, and treating for it if there was any suspicion, since it's a treatable illness in the early stages. In Xian's case, an autism diagnosis (which I believe is wrong, anyway) would have huge costs to the province, as here autistic kids receive $60,000 a year in funding support and that's not counting any other medical or educational costs. In Ed's case, he ended up receiving one to one special education support---and while he was also similarly enveloped in a big fog, his mother says that there's been a lot of evidence that while he was unable to react/express when he was ill, he was still 'receiving' information---he's talked about classes he was in, etc. and at other times feeling like he was 'stuck' in a kind of loop he couldn't break out of. I've always figured that even when Xian has been at her worst, that's she's still been 'in there somewhere'.
The other interesting piece was that fluctuation (on a hourly/daily/weekly level) is apparently quite common with lyme, as are cycles of improvement and then getting worse -- apparently something possibly linked to the life cycle of the bacteria. Xian's had marked periods of improvement and decline -- getting her first symptoms in August and continuing to get worse until the end of September, when she returned seemingly back to normal for a few weeks, until the end of October, when she got a lot worse, with some ups and downs until the end of November when she got a lot worse -- then improved in early January for a bit until she took a big dive in mid February, and then gradual improvements again in late April.
Who knows what the test results will bring and how much of a fight I'll have on my hands to get the requisition signed (or for any treatment that might be required)---though I'll go to a Medicentre if I have any trouble at Xian's clinic---will be asking to see the partner who visited us when she was in the Alex, who also happens to come from Eastern Europe where lyme is a bit more known. But it finally feels like there's a possibility that makes sense and ISN'T something extraordinarily rare. Janet said that there were three cases of lyme carrying ticks (found on dogs) in this city last summer, so it's even possible if she does have lyme that she contracted it here and not on Vancouver Island, where there has been a lot of lyme publicity lately.
After hearing over and over again that Xian's case was so unique and that there's never been anything like it seen by her doctors it feels pretty amazing to discover at least two other very similar stories---with almost identical trajectories in the local health system. You can bet that if Xian does turn out to have lyme that I'll be very vocal about our experiences, but meeting Ed and his family gave me a lot of hope that we can get Xian back to her old self, eventually.