On Wednesday March 5, 2014 at 4pm, I had a doctor's appointment. Due to the doctor I've been seeing for the past couple years reducing his patient load, this was my first appointment with the other doctor in the practice, the other doctor in the team that work together to help so many with chronic illness.
During this appointment, twelve months after my doctor first suggested the possibility of Lyme disease, I received confirmation:
I have Lyme Borreliosis, along with Babesiosis (Babesia). There are other co-infections and complicating factors which cannot yet be ruled out.
I went through a mix of emotions over the next few hours. Disbelief, shock, and then excitement and joy at the thought that with treatment there is actually a very real possibility that I could get significantly better.
A couple more medications were added to my treatment protocol: Firstly, rivotril, and secondly, I have been put back onto the dreaded azithromycin. The drug that made me terribly depressed on just 1/4 tablet last time. My doctor is certain that having been on minomycin for a couple of months now, and with the assistance of the rivotril and a detoxing juice that she has instructed me to drink every day, I will not have such horrible herxing this time around. I have been taking 1/4 tab of azithromycin, 3 days per week for the past couple of weeks. Apart from it causing me to have weird and, at time, unpleasant dreams every night, as it also did last time, it seems to be so far so good. This next week I'll increase to 1/4 tab 5 days per week which I'll do for a fortnight before the big jump to one whole tablet per day, 5 days per week. I've been instructed to call my doctor in the next week or so to give her an update on how I'm doing. Or, at least, speak to the nurse, who'll then pass on the message to my doctor. At the end of this appointment, I had some blood taken, just to check up on a few things.
About a week later, I received a call asking me to come back in to have a chat about my test results. I thought this strange, but wasn't really concerned as it was just basic blood tests that had been done. More intrigued.
As it turns out, I was right about it not being anything worth worrying about. My doctor just wanted to talk to me about my ANA levels (Anti-nuclear Antibody). The accepted range for ANA is <160. Mine reads as >1280. It's been at this super high level since it was first tested in 2012. That's not ideal but at the same time I'm not freaking out about it. Strong positive ANA is associated with significant autoimmune disease, including Scleroderma, Rheumatoid Arthritis and Lupus. It is also not necessarily associated with either Lyme Disease, it's co-infections or my other diagnosis of a genetic connective tissue disorder, similar to Ehlers-Danlos Syndrome, so it's worth noting.
My doctor thinks that we might be able to lower my ANA level by completely eliminating dairy and eggs from my diet. For the past couple of years I've been off of cows milk products (apart from a very occasional treat, I admit!) and also haven't been eating eggs, apart from in small amounts occasionally such as in a cake that I didn't bake myself. I have, however, been eating goat's and sheep's milk products. My doctor says that these things now have to go. So, for the next 3 months not a speck of dairy or egg is to pass my lips. I will then have my ANA levels retested, and if they are still through the roof then I'm off to see a rheumatologist. She also increased my dose of plaquenil to 2 per day, 7 days a week (up from 1 per day, 5 days per week), to try to help with my aches and pains and the cramping and stiffness that I get in my hands (though the cramping is definitely better since starting daily magnesium injections in December), and also increased my dose of minomycin from 2 tablets a day, to 3 tablets a day, 5 days per week.
My next doctors appointment is in early June. I've already got the pathology request to have my ANA levels retested, along with checking a few other things, so I'll get that done a week beforehand so we can discuss the results at my appointment. And then? Who knows what the next step in this adventure will hold!
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