I always thought of blogs as being narcissistic, business related, or as my sister's, a way of keeping in touch or memorializing.

But, by necessity, I am learning a lot about myself. I find I need to get my thoughts out, and it helps me to know that someone else will read them. So I have created this little space for myself, to express the things I have trouble saying (be it emotional or physical trouble), to share what I'm going through, and what I'm learning through it.

I absolutely welcome comments. It's nice to know how people relate to what I'm saying.
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Saturday, 7 July 2012

Medical Check-in

I've noticed that I'm writing a lot less lately, and mostly it's because I don't have much to say. I wonder if that means I am coming to terms with the way my life is going, or if maybe I've said so much already. Maybe it's a sign that my brain is settling down a bit, and I'm not having quite so many internal conversations that I need to get out so I can relax and rest. That would mean my anxiety levels are down, which is very true.

In any case, today I do have something to say, and it is all good news - at least for someone seeking answers and guidance. It always amuses me that those of us who have these mysterious health issues get so excited when our test results actually show something concretely negative. It's cause for celebration. We tend to feel the same way when we finally get a diagnosis, often after years of trying to get one. It is validating, and it is a relief to know that somebody has some sort of clue about what is going on in our bodies.

I had a follow-up with the doctor from California over the phone. You may recall I really really liked him, and he adjusted a few things, and had some theories about my particular case of ME. We had the results of my blood tests, which showed anomalies, and he was able to explain the significance, because he actually knew and understood what to look for. Without going into the sciency details of the whole thing (I learned a lot, and promptly forgot the details, but kept the overall concept), this is basically what came out of the conversation.

The indicators of viral activity in my bloodstream are very high. There is an active virus, probably lots of them, actually, but one that was definitely identified as being active is the Epstein Barr, which is commonly associated with Mono and other such fatigue-related illnesses (hmmmm). We also now have concrete proof that my methylation cycle is seriously blocked (I cannot for the life of me explain methylation, so here is a link to a pretty simple summary). All of this points to my immune system not working exactly efficiently, and that being a key factor in my illness.

We suspected this. All of it. We knew it to be very likely. But now, to have proof, to know beyond a doubt - that's pretty cool. The doctor was very careful to say that although we know now that there is an obvious viral aspect to my particular brand of ME, that does not prove that it was caused by a virus. The treatments, and my response to them, will help us figure that out. But honestly, I don't really care how it started anymore (unless it means I can avoid relapsing in the future), I just want to feel better and better.

Every time I get some confirmation of something being wrong, every time I understand a little better why particular things affect me, I feel like another piece of the load has been taken off my shoulders.

The best part, though, is that we have a plan to deal with this: first, a short-term long-shot to try out, being a common anti-viral prescription which works in about 15% of cases; second, another anti-viral and immune booster which takes effect in several months, but has a much higher chance of working; third, a new treatment of something I really did not understand but sounded very exciting, which also helps the immune system.

Next step, visit my MD here at home, with my Mom's notes, so we can give her a more detailed update than I've given you, ask her for the scripts we need, and get going!


  1. That is great news Andy! Finding out what is making you sick is the first step to getting you better. Carry on!