Thursday, October 9, 2008

Lyme Disease

As you may recall, my first IGeneX Western Blot for Lyme was "indeterminate." The IgG was positive; the IgM was indeterminate. So Dr. R proposed that we try an antibiotic challenge. See, Lyme is a nasty little bug that can hide itself in tissue, so it's not detected in the bloodstream all the time. By taking antibiotics, we wanted to see if some of the Lyme would be killed off, their dead bodies released into my bloodstream, where my immune system would recognize them and start to produce antibodies. Which we would then test. And we also wanted to look at a CD57 test. This test, according to this site:

This is how it works: Chronic Lyme infections are known to suppress the immune system. The Lyme spirochete can affect all major cell types of the immune system, but it most clearly can impact a specific subset of the natural killer cells. This is called the CD-57 subset. Just as in HIV infection, which suppresses T-cell counts, Lyme suppresses Natural killer cell count such as CD57. As in HIV infection, where abnormally low T-cell counts are routinely used as a marker of how active the infection is, in Lyme we can use the CD-57 count to indicate how active the Lyme infection is. When Lyme is active, the CD-57 count is suppressed.

So a low CD-57 is indicative of a more active infection. Dr. R says he likes to see people at around 150, if not higher.

My CD-57 came in at 25. My new IgM test came back positive. Given the two positive antibody test and the results of the CD-57, combined with my symptoms, strong die-off reaction with antibiotics, and possible exposure to Lyme, Dr. R has diagnosed me with Lyme disease. (I should note here that I am not positive for Lyme according to the CDC guidelines. This area of testing and acute vs. chronic Lyme is very controversial and I'm not going to get into it right now.)

Some ticks who carry Lyme also carry a co-infection about half of the time. Based on my symptom set, Dr. R believes I have a strong possibility of also having a bartonella infection. We are not testing for this because only one of 30 strains can be tested for, and it's expensive to do even that.

The other co-infection, babesia, is not of major concern to us right now. I'm not getting tested now, as I have enough on my plate, but in three to six months if there is no improvement in my night sweats, we will look more closely at babesia. (Also, babesia cannot be treated at the same time as bartonella, so we're starting with bartonella.)

The practical changes in my life given this new diagnosis are few. I am continuing to treat for yeast overgrowth. I have about two more weeks on the Diflucan, and then I will continue to take Nystatin. I'm continuing on azithromycin for the Lyme, and we are adding Rifampin for the bartonella. Additionally, we are probably going to increase my clonazapam dose for sleep, and I'm switching from Tramadol to Vicodin for pain.

Rifampin is particularly exciting because it was originally a medicine for tuberculosis and can cause your urine, sweat, and tears to turn orange or red. Just in time for Halloween.

So for those keeping track, I'm currently taking: azithromycin, diflucan, nystatin, rifampin, clonazapam, vicodin, sertraline, ashwagandha, quercetin, B-vitamin complex, nasty drink mix, d-ribose, n-acetyl-l-cysteine, acetyl-l-carnitine, calcium, vitamin c, vitamin d, iron, omega 3, probiotics, and B12. Oh, and there's also my nasal spray for allergies/non-allergic rhinitis. And my birth control pills, which are completely unreliable now that I'm on antibiotics. But the more drugs the better, right? Better living through chemistry and all that?

In a month we will probably add another medicine to fight Lyme, but are holding off right now because I'm having such a severe die-off reaction already.

As for a prognosis, Dr. R says that 90% of his Lyme patients get "better" (feeling good and unlikely to relapse) within two years. Most of the improvement takes place in the first 9 months, after which it plateaus. Some patients improve more quickly; others can take much longer. This, of course, sounds fairly promising. I'm kind of freaking out about the two years thing, but that's a blog post for another day.

That's the round-up of my personal medical status. I need to read up more about Lyme disease so I can understand it better. See, chronic Lyme is even more controversial than CFS. I have some reading suggestions from Dr. R, and I want to have a better handle on it myself before I try to write about "what is chronic Lyme disease."

Also, I'm sure you, like I, are wondering, "Well, does this mean you don't have CFS?" Sigh. I don't know. Maybe. Maybe not. As I've said before, CFS is a kind of waste basket diagnosis, where they put you when they don't know what else to do with you. Some people with CFS have elevated EBV titers, and others don't. Some have elevated HHV-6 titers; others don't. You see where I'm going.

In addition to the chronic Lyme, I also tested positive for C. pneumonia back in August (it's no doubt killed off by the antibiotics by now). I also have very high EBV titers and mildly high HHV-6 titers. My hypothalamic-pituitary-adrenal axis is no doubt out of whack. Neurologically and immunologically, I'm all messed up.

So it is possible that when we have dealt with the Lyme, there will still be other CFS-related problems left. Or it's possible that when the Lyme is gone, my immune system will have rebuilt itself enough to deal with the viral issues on its own. I just don't know.

I used to think that my illness had a cause-effect pattern of a single line of dominoes, like we used to set up as kids. Domino A knocked down Domino B, which knocked down C, then D, and so on.

Now I see the illness is way more complex. It's more like a fancy domino design, where branches break off, and there are little fan patterns, where one domino can knock over two, which in turn knock over three, which then knocks over four.

Stepping back, the complexity can be almost beautiful, but the reality is that I've got a bunch of dominoes to pick up and put back in my toy box. I can't just pick up the very first domino and expect all of the others to jump up and be set right again. And the first domino to fall might not be the one that started the biggest avalanche. Maybe that was domino number 52.

Anyway, I'm stretching my metaphor too far. What I'm trying to say is that I don't know how this will all get resolved, but for now I'm trusting my doctor's advice and dealing with the Lyme and other bacterial stuff first. Because, in the end, it doesn't matter if I understand the exact cause/effect pattern. This illness isn't going to make sense just because I want it to.

So instead of fighting the chaos, I'm going take a step at a time and hope that I'll get through this.

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