Liesl Wilke

A symphony of B’s (Borrelia, Babesia, Bartonella, Badness)

Lyme Disease is named for Lyme, Connecticut, where several early cases were discovered and studied, leading to the identification of B. Burgdorferi in 1978 (not so long ago). Since then, while testing has improved somewhat, there are still huge problems with diagnosis, particularly in areas of the country less familiar with Lyme. As people move for work, travel, and as disease-carrying birds migrate, the disease becomes one of national importance, but information and good care are still scarce. I worry that only when we lose enough (whatever terrible number that would be) children to undiagnosed and untreated Lyme will the epidemic be recognized and treated as it should. For the most tragic part about Lyme is that if it’s caught early, treatment is simple – a few weeks of antibiotics (usually doxycycline), and the bacteria is controlled. If, however, the infection is overlooked, Lyme and the other bacteria that often are carried by the same ticks, works its way into tissues, the central nervous system, organs, you name it. It takes on several forms and is difficult to test for because the organisms leave the bloodstream and hide (and wreak havoc) in tissues, organs, the brain. Similarly, it’s difficult to treat because the drugs we use have to make their way into tissues, across the blood/brain barrier, and be able to attack B. Burgdorferi in all of its forms to ultimately eradicate (or control) the infection.

Much has been learned about how to attack the different forms (spirochete, cyst, L-form) using combinations of antibiotics, rotating drugs to keep the attack fresh, use of antifungals to maintain balance and to deal with fungal infections and/or mold biotoxins, use of enzymes to break down biofilm (another way the bacteria cloak themselves and avoid death), and for some, correction of other infections in the stomach or elsewhere that have overloaded the immune system such that the antibiotics don’t stand a chance. Still, there is so much more to be learned. This is a very expensive disease to have, and a scary one. It’s not clear whether us chronic patients will ever be rid of the disease. We may have to take an antibiotic for the rest of our lives, though if it meant a return to better health, likely most would find that result acceptable. Not knowing is the hardest part. Am I taking the right combinations? What’s really happening in my brain, my muscles, my stomach? Will I always need thyroid medication? Will I ever sleep normally again?

Here’s a link to my narrative story beginning in 2008, when my health really failed. I was likely infected in the late 1990’s, but never diagnosed. I hope my story may be of help to others on their own journey. Of course, what has worked and failed for me won’t be the same for everyone else, but there is such a paucity of data for us to work with that our stories are often the best we have to offer. Read more HERE.

Also take a look at the excellent documentary Under Our Skin, and the website of the same name. Everyone should know about Lyme. Every time we hike, walk in tall grasses, work in mulch, we must check ourselves for ticks. And if we or our children ever come down with an odd sort of flu after one of these activities, get them some doxycycline. I say better safe than sorry. About half of folks infected have a round slightly raised rash. Document that if you have it. Keep looking until you find a doctor who knows about Lyme. Waiting could mean years and years of treatment and a drastic change in quality of life.