I received the news a few weeks ago that my daughter also has lyme disease. Her Igenex labs (Western Blot) were clearly positive, where they had previously been indeterminate. For my son and I, this was never an issue, and so I hadn’t read up on it much before (though I was familiar with the concept thanks to Weintraub’s book Cure Unknown). Here’s what I found:
An article on testing by Tom Grier published through the Canadian Lyme Foundation references several published articles on people who have proven Lyme disease (e.g., through a blood culture or Spinal Tap PCR), yet were negative on the Western Blot. One reason for this that Grier provides a reference for is that “once an antibody finds something to latch on to in the bloodstream, it is no longer available to be detected with our current tests.” The Jemsek Clinic’s page on testing states that “Unfortunately, almost one/third patients with LD are IgG seronegative during the first year” (emphasis theirs).
But what makes it possible to convert from negative to positive due to antibiotic treatment (as my daughter did)? The Jemsek clinic states that “some of our patients only convert to a laboratory positive after they have received antimicrobial therapy, whether it is oral, intravenous, or a combination of the two. We suspect this phenomenon stems from Bb [the spirochete that causes lyme] die-off on therapy, with an ensuing boosted immune response.” Another doctor who treats Lyme Disease discusses a specific case in which treatment led to conversion on his blog. He states that he has found no publications explaining this, but it is familiar to him from his own clinical experience.
We did not hesitate to treat our daughter. She is on amoxycillin (400 mg 2x/day), as well as Banderol, Samento and Parsely from the Cowden Protocol (all of the herbs in the protocol are covered in this review by an unknown fellow Lymie — her blog has this post only in it, but it’s more information than I could find in a quick search elsewhere, all in one place). I was pleased to see a post today on the Lyme Disease Research Database Blog reviewing recent work by Eva Sapi showing that Banderol and Samento are effective at treating Lyme in the test tube. Formerly a cancer researcher, Eva Sapi is a tenured professor who has become one of the few researchers tackling the most pressing issues of Lyme Disease. I’m glad she went outside of just antibiotics, and glad that these seemingly innocuous drops have something backing them up! We are also giving probiotics, and continuing zeolite (but no other chelating agents). My son is currently getting the same drops, and nothing else while we wait on the results of a urine test for him to see what’s going on with his lead levels.
Both children seem happy (finally, for once!) with their treatment protocols, argue little if at all with me about taking their meds, and everything is going smoothly. Both also seem fairly healthy though my daughter seems to be having some bowel issues and occasionally still complains about fatigue and belly pain. As for myself I have fallen off the bandwagon medication wise yet again and am taking nothing at all right now. My symptoms persist in a mild form (some dizziness and napping, sometimes headaches, but overall a lot of energy).
It’s funny… each new piece of news has caused less of a ripple in our lives. The insane has become routine, and in the process also manageable. Of course it helps that both children are so … alive, happy, able to do and be out in the world. We are lucky, really. At the same time, I find this in other areas of parenting as well, and maybe it’s to the benefit of second children that their parents are just more relaxed about everything. I certainly never imagined being in this place, nor accepting it so quickly.