A “good enough” diagnosis

It’s been an interesting week, if you consider Sunday to be the end of the week and not the beginning.

On Tuesday, I got the results of several blood tests and allergy tests, and met with my immunologist. Then I had a really whacked-out week and didn’t feel like processing everything here in writing. I mostly felt like eating chocolate.

The good news is: I tested negative for any food allergies on the skin test. Yay!  I’ve done elimination diets before (for my sinus/bladder/fatigue problems) and have felt no difference, so this confirms my suspicions that I can eat almost anything. My other assorted blood tests also came out fine. My environmental allergies were numerous and severe, but I was already aware of those.

The bad news: My blood test showed recently active or reactivated Epstein-Barr virus. I am 0% surprised. All of my symptoms started after I had a very bad case of Mono 5 years ago.

This is not terrible news, because it’s what I already suspected. I can’t technically be diagnosed with CAEBV (Chronic Active Epstein-Barr Virus) because I haven’t had consistent blood tests showing the virus as currently active. My specific diagnosis is “Post-viral Infectious Fatigue Syndrome,” but for health insurance purposes and recognition here in the US, I have been diagnosed with Chronic Fatigue Syndrome (CFS).

The other bad news: According to my new doc, most of my treatment last year was useless and even somewhat harmful. I’m usually a little skeptical when one doctor is strongly dismissive of other doctors’ opinions and treatment, but this time he confirmed what I’d already experienced. I’d been going to a medical practice where they prescribe loads of supplements and herbs that have no research backing them. I ended up in the ER twice last year after my doctor urged me to keep taking huge quantities of magnesium.That’s a whole other story.

All of this brings us to…

The pretty good news: I now have a treatment plan (yay!). I was given the option of taking valgancyclovir, with the caveat that it can have some pretty nasty side effects and is usually only used (with mixed results) in very bad cases. My other option was eating well, getting lots of rest, allergy shots for my many environmental allergies, and – the big one –  Graded Exercise Therapy (GET). I’m going to forgo the medication and try the GET and general healthy-living, some of which I already do. I have 3 PT appointments lined up, and I’m looking forward to it.

While a CFS diagnosis comes with its difficulties (no cure, few standard treatments, stigmas and skepticism from others), I at least know that my symptoms seem to be caused by EBV. This gives me a more concrete idea of what’s going on. What my doctor told me was in accordance with the recent research into CFS: they don’t know exactly what causes it yet, but most people experience some major illness before CFS sets in, and there seems to be some co-morbidity with allergies and other immune system issues.

So, what’s the best news?

I feel strangely free to take care of myself now. I began doing that more last year, with the help and guidance of several amazing women. But now I have a real plan. I have something I can tell people when they ask me to do a triathlon with them, or go for a hike, or have a drink. The very idea of doing physical therapy makes me hopeful and less afraid that I’ll overdo the exercise and crash again.

I’m not alone, either – I can connect with other people who have the same diagnoses and similar struggles. I can read about some wonderful success stories to give me hope.

I can take this CFS diagnosis. It’s mine – it’s my life. I don’t have another one. I’ll stop fighting my reality and do what I can with this right now.