mikebo

My doctor refered me to an immunology specialist about a month ago. At the time he’d sent one other of his patients to him and they’d had good results. Some special bloodwork which isn’t done in many labs would be performed, and depending on the results I’d be put on the same drug as this other patient. The medication, while not illegal, is not FDA approved. I’d be on an experimental plan that would involve being on the drug for two months, and on a placebo for two months, but I wouldn’t be aware which was which.

I met with the doctor and had blood drawn. Two different tests are being performed and in two different locations, Miami and Jersey. The bloodwork has to arrive at the labs in less than 24 hours for the tests to be done. Kudos to Earl, the nurse who literally ran in order to get that in the FedEx overnight shipment. The blood that was sent to Florida is testing my white blood cell activity of Natural killer cells. Your NK cells become more active when you get sick; they attack infected cells rather than going after bacterias and viruses directly. If my immune system is always fighting something, it would explain the constant exhaustion and related symptoms. The Jersey test is a Polymerase chain reaction (PCR) that in this case looks for Lyme disease and a few other tick born infections. If positive, it could be the cause for any supposed NK cell activity. The PCR is bit more sophisticated than the typical antibody testing done for Lyme. It’s also more expensive and difficult to perform. My doctor requested it when I was tested for Lyme a year or two ago, and my local lab didn’t know what it was and couldn’t do it. Both types of Lyme tests risk false-positives however, so I really wouldn’t know anything until I react to medications. I’m getting ahead of myself though.

I received the Jersey results. Lyme was negative, but I tested positive for another tick born bacteria, Babesia. Babesiosis produces malaria like symptoms (fever, chills, sweating, myalgias, fatigue, hepatosplenomegaly, and hemolytic anemia,) which fits with my condition at the start of the illness. Babesia has only been detectable in humans since the late 60’s, and it’s very rare as it usually only infects animals, so there’s still a lack of information compared to other diseases. It can be fatal without proper treatment. Symptoms will gradually disappear over 12 months. It will be my tenth anniversary of the onset of illness this January, so Babesia probably isn’t the whole story.

The ticks that carry this bacteria are generally found on islands off the coast of New York and Massachusetts. I didn’t visit those areas until after the illness began; the only similar type of environment I’ve been to was an ecological trip to Wallops Island off the Eastern shore of the Delmarva Peninsula in middle school; 7th grade I think. On the other hand, there are deer in my yard nearly every day of the year, so there’s always plenty of deer ticks knocking at my door. I’ve never been bitten by one to my knowledge. As I write this, I just remembered being bitten on the neck by a cockroach, or something of the roach shaped variety, back in high school during community service at a thrift shop. Depending upon when that took place, it might fit the timeline. Might be nothing, but worth looking into.

I’m still waiting on the results from Miami, so I don’t know what will happen with the experimental study. The treatment regiment for Babesia on the other hand, I’ll be starting this Thursday. A trio of antibiotics for 5 days, followed by more testing and then depending on those results, repeating the process a few weeks later. The medications: Cefuroxime, Telithromycin, and Doxycycline (which I’ve been on before.) These have some pretty nasty side effects, but then almost everything I’ve taken has had that potential. One can cause blurred or double vision and difficulty focusing, and they all have effects that involve both ends of the digestive process and the adjective, severe. I’ll leave it at that. Should be a fun weekend.

Having a possible specific cause for at least some of my health issues is exciting. Up until now we’ve mostly been combating symptoms (a syndrome is a collection of symptoms without a known cause,) so being able to go after a particular disease holds a lot of promise. If nothing else, we may be able to help some others with Chronic Fatigue with the information gathered. I’ve been burned before, so I’m being cautiously optimistic. Wish me luck, hope to have more news soon!

This entry was posted on Tuesday, November 8th, 2005 at 4:45 am and is filed under Biographical. You can follow any responses to this entry through the RSS 2.0 feed. Responses are currently closed, but you can trackback from your own site.