Saturday, October 18, 2008

What's in a name?

I tried to explain this issue in another post, but I don't think I did a good job, because I've been asked a few times, "Well, now that you've been diagnosed with Lyme, that means you don't have CFS, right?"

The short answer is No. The slightly longer answer is It Really Doesn't Matter Either Way. I'll try to explain more clearly.

1. What is CFS?
Well, if I could only answer that... Of course, no one really knows. Theories abound, but there's no clear etiology. Entire books have been written in an attempt to answer the question. But here's my guess: Something happens that creates a chain reaction in your body that screws up multiple systems, with an emphasis on the immunological and neurological problems. This sets the stage for even more problems--the invaders. Now that your body is compromised, latent and new infections can blossom and flourish.

In my case, it is likely that old EBV and HHV6 infections (viruses that nearly everyone carries around with no ill effects) got re-activated. The Lyme bacteria may be new, or it may have been hiding in the central nervous system and other tissues, and this was its chance to shine as well.

A good analogy is Iraq after the American invasion. We got rid of Saddam Hussein and swept out the old government and disbanded the old army. Suddenly, there was room for various factions to start fighting for control. Insurgent groups that may not have had enough strength before the invasion grow in numbers and power. They get crafty and suddenly IEDs are killing soldiers and civilians alike, and everything is all confused and totally f***ed up.

To carry over the analogy, my body's old government (neurological, immunological, endocrinological) was overthrown and little factions of viral and bacterial infection started multiplying and growing, occasionally setting up the physiological equivalent of car bombs. And now that there's so much chaos and so many problems to fight, it's all f***ed up.

2. Um, OK, so does this mean you have CFS or not? Maybe. Probably. Because CFS is not a particular "disease" but rather a "syndrome," I think that the various factors of the syndrome include many causative agents. I think that Lyme is one of those agents.

3. So you have Lyme and CFS. I think so. That's my best guess.

4. So what are you being treated for? This is where the "It doesn't really matter if it's Lyme or CFS" thing comes in. My doctor's approach to CFS is a holistic one. His first priority is to make sure that the body is able to function and begin to rebuild the shattered systems. To do this he looks at a variety of issues.

The first issue is sleep. Without proper sleep, everything goes to hell. So I'm to get good sleep. I've got medication to help, and I also use Reiki before bed to help get deep, restful sleep. (Now if I could only get rid of the night sweats that wake me up every night!)

The second issue is nutrition. I've talked a lot about that already. You can read that post here.

The third issue is hormonal. In my case, I'm taking an herbal supplement to help with adrenal fatigue, as well as a thyroid supplement, as my lab tests showed a slightly low T4.

The last issue is infection. Once you've got sleep, nutrition, and hormonal support, it's a lot easier to fight infections--viral, bacterial, fungal. To begin, I'm currently being treated for intestinal yeast overgrowth, based on my symptoms and history.

After the yeast/fungal problem is addressed, we've got to ask--which infection do we tackle next? I know that I've got issues with EBV and HHV6, and back in August I tested positive for C. pneumoniae. And now I've been clinically diagnosed with Lyme. So where do we begin?

We're starting with the bacterial infections. The C. pneumoniae is no doubt gone by now, after the first round of antibiotics. The Lyme will be much more difficult to fight, as I've discussed in other posts.

After the Lyme is dealt with, then we will turn to the viral infections. Hopefully my body will have rebuilt its systems enough by then that it will deal with the viruses on its own and we won't have to turn to either herbal or prescription medications. But anti-virals are still a possibility.

So after the Lyme is gone, I may still have "CFS," or I may not.

5. Gee, that's complicated. Yeah, I know. I'm kind of like an infectious soup right now, no matter what name you want to give it. So I'm taking this one step at a time. Sleep. Nutrition. Hormones. Infections. And I might try to throw a little Having Fun in there as well, because I don't think I'll get well if I refuse to embrace what joy there is in my life--and despite everything, there's so much beauty and love and happiness surrounding me, I feel blessed even on my worst days.

6. Are you going to wax philosophical now? I don't believe that "everything happens for a reason" in the way that people usually mean it. But I do think that every experience has value. I'm trying to live through this with mindfulness, with a willingness to be sick when I'm sick and be happy when I'm happy.

This illness has given me many gifts, despite all that it's taken away in return. I've been forced to open up to radically new experiences, and I've found a new depth in relationships--particularly with my husband, Nick, and dear friend Martin. They have both been a tremendous help and a source of joy. I was about to write that I can never repay them, but then I realized that I don't need to, and they don't expect it, and that's a part of what I've learned...trusting, loving, accepting help, and knowing that there's someone to catch me when I fall.

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