What Kind of Outcome are We Hoping For?

A lot of people have asked me about what I have to expect in terms of treatment and recovery from Lyme. The answer is that I don't really know. Lyme disease affects each person differently, which is one of the reasons that it's so difficult to diagnose and treat. Still, there are similarities and we can point to generalities in trying to chart a course for treatment and recovery. I've blogged before about the course of treatment I've opted for, which is sometimes called combination antibiotic therapy or long-term antibiotic therapy. It's controversial, and according to the CDC it hasn't been proven to make a significant difference. But the doctors that do it (visit the International Lyme and Associated Diseases Society to find out more about the reasoning behind it) report that it works to improve and treat about 80% of patients at various stages of LD. Among the doctors that do it, (referred to as LLMD's or Lyme-literate medical doctors) and the patients that have received it successfully, (and there are lots of them,) everyone is in agreement that the treatment is measured in years, and not in weeks or months. This is hard to wrap your head around, since with modern medicine, we have become accustomed to taking "miracle" pills or procedures that usually make us feel better in a few days or weeks. Treating LD is a marathon and not a sprint.

The reality for me is that when I began this journey with my initial diagnoses in January 2009, the doctor's best estimate at the length of my treatment was between eighteen months to two years. Now over a year into treatment, we are probably looking at another year or two of antibiotic therapy, and continued immune support for the rest of my life. I've had a couple major set backs, but for the most part, my treatment has been going really well. There is no cure for Lyme disease, but it is possible to get it under control. It basically goes into a remission of sorts, or dormant, with the possibility of recurrence under the right conditions (like when your immune system is down because of illness, stress or other factors) -- kind of like chickenpox and shingles. This is the reason that I'll work the rest of my life to actively support my immune system.

For the forseeable future, I'll continue to do exactly what I've been doing. Then after a few more months of improvement, we'll gradually start to cut back on the antibiotics I'm taking, slowly weening me off the high doses I'm currently on. Over time, I'll be able to stop the antibiotics all together, which will be wonderful! Basically, each of these steps will be determined by how I am currently doing, and how many different symptoms I'm dealing with at each appointment. The decision to begin cutting back on the antibiotics will be made when I am either symptom-free or mostly symptom free. Some of the symptoms may be permanent damage from the effects of the infection and the inflammation it causes, rather than being caused by the active infection itself. Obviously, we are hoping to get rid of all of my symptoms, but only time will tell.

I know that antibiotic therapy is controversial, but I feel like it's saved my life, literally. Each day is a challenge, and this is definitely the most difficult thing I've ever done in my life, but it's worth it! I've had a paradigm shift over the past two months as I've begun to love taking my antibiotics. No longer an annoyance, I realize that they are helping me to get my life back, and I look forward to taking them...giving my body and my immune system the boost it needs right now, until it's strong enough to be able to fight on it's own. I'm grateful for the physicians who have been open minded enough to listen to their patients, and to take a risk in the hope of relieving suffering and improving quality of life. I know that this treatment has done both of those things for me, and I am anxious to continue it!

Right now, Bryan and I are taking each day at a time, working on challenges as they come up, and enjoying and making the most of my good days, (which are happening more and more often!) Bryan has a degree in Biology with a minor in Public Health, so he had to take some classes on infectious disease during his studies. He says LD is the craziest disease he's ever heard of. I have to agree with him. There are so many random symptoms and issues that come up at the strangest times. We aren't really too concerned with most of these things, since we now understand what's going on with my body and why. For a long time, we've had to deal with many more questions than answers. I think that we're finally to the point where we're beginning to turn that around. It feels great!