Part 4 of 13 of Anna’s Story at CanadianLymeStories.com
Many of the people in our doctor’s practice have been diagnosed with chronic fatigue and fibromyalgia. His is a holistic approach that looks at all sorts of aspects of complex illness; finding ways to allay symptoms while also looking for the underlying cause. Many of his suggestions are not easy to follow; eliminate gluten and then perhaps dairy, maybe sugar and/or all carbs, stay on track with a wide variety of supplements, come for vitamin and mineral IVs, keep regular bedtimes.
Our friendships flourished as we, his patients, worked to implement his multiple suggestions. Some were easier than others. Some caused real conflicts with the people closest to us. Food issues proved some of the trickiest. From my wildly unscientific sample, however, we all seemed to improve when we made these lifestyle changes. We were, though, all subject to setbacks. Perhaps this is what led him to test us for our CD57 markers, a test considered to be an indicator of tick-borne infection.
That was our second really bad meeting. It was a couple of years after our first tough meeting (after my Hashimoto’s diagnosis) and I was feeling pretty good. If I overdid it I would pay, but I had started exercising like a fiend (which really helped) and was being very careful with my diet. I wasn’t working much, my kids liked school, my husband was nice about me napping when I needed to; life kind of rolled along. I had finally adjusted (kicking and screaming) to this new person-who-has-to-be-very-careful-with-their-health-but-is-getting-stronger-all-the-time version of myself.
Then my doctor told me that I had tested positive for an indicator of Lyme. He said I needed to spend another $700 to get a blood test from California because the Canadian one was no good. (A stupefyingly awful political issue about which Elizabeth May has tabled a bill in Parliament.) This was not good news, but I put off thinking about it, paid up and got the blood test.
It was only when the Igenex test came back, mostly indeterminate, and I thought, ‘Good, it’s indeterminate, I’m off the hook,’ that my doctor sat me down. ‘Any positivity in the result means there is Lyme present. It explains a lot, and you need to deal with it. There’s a doctor in the States, Maureen McShane. I want you to make an appointment and go to see her.’
Now I love my doctor, as I’m sure is obvious, but I could not have been less interested in hearing his opinion on this topic. I was also not at all interested in looking at the long term effects of walking around with Lyme bacteria and its co-infections; the shocks it would be sending through my already jumpy immune system, the way it would be interfering with my digestion and absorption of minerals, the inflammatory effect it would be having on my joints and other soft tissue, the continued slowing of the mental functioning that I needed to work or get through any given day. I was even less interested when I read up on Dr. McShane and realized her preferred treatment plan was a prolonged course of antibiotics.
Now came a period to which I would have to refer, with no hilarity at all, as my Prolonged Fit over my Lyme Diagnosis. It is not my proudest moment. Truth is, I was shattered. It had such an awful Snakes and Ladders feel; to be right back at the beginning of something new when I thought I was at the top, just waiting for the right roll to get me off the board.
I wept and sulked and stayed out late. I drank and ate things I knew would make me sick. I felt completely sorry for myself. I didn’t talk to people because when I am really upset I don’t. I didn’t even call Sara because what could I say, ‘CAN YOU FUCKING BELIEVE I have what you have?!?’ Even to my own ears (which were just about being pickled in self-indulgence) that sounded self-indulgent. But it didn’t last. I remember what my therapist once said to me when I first went to therapy and was crying all the time. She said, ‘Oh yeah, that happens. But then you can’t cry any more and it stops.’ Which is kind of what happened to me.
And when I stopped crying and generally having a fit, my natural curiosity took over. I did have to start looking into things. And when I did, I had to make a plan to go see Dr. McShane. (Luckily the waiting list to see her was so long it gave me months and months to get used to the idea.) I think I might have been the only person who, when told that it would be a five month wait, refused being added to the cancelation list. Truthfully, it was going to take me that long to calm down.
On to Part 5: Coping
Keywords: Related conditions, chronic fatigue, fibromyalgia, long term effects of Lyme