… and then there were three

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.

6 thoughts on “… and then there were three

  1. My husband recently finished reading “The Top Ten Lyme Disease Treatments”. Do you recomend “Cure Unknown”? Does it provide treatment stategies?

  2. I definitely recommend it as it helps to provide important, well researched background on the condition. It will not tell you how to treat though.

  3. I thought that Pam did a great job. I cried when she described the sensations she experienced because mine were pretty much the same, except I also had skin lesions common to late stage spirochetal disease. The treatments have to be finely tuned to each persons presentation and symptoms as well as co-infections. Dr. Burrascano gives a good treatment plan with the ILADS guidelines.

  4. Thank you for the wealth of information you’re providing! I’m in Pittsburgh also. I was bit by a tick in the Laurel Mountains almost two years ago then started to have severe neurological symptoms for about a month after. I didn’t correlate the two at the time, but my Dr. ordered a western blot along with lots of other labs to see what was going on. I never had a rash so I told her it was silly to run the test. It came back with band 23 reactive on the igm and only band 41 on the igg. She confirmed that I did not have lyme and I was relieved :) fast forward almost two years later and I’m still having extreme symptoms that have lead to dead ends. After researching my symptoms I keep seeing lyme come up. Do you know of a local doc that will test ignex lyme labs? I’d like to get tested so I can rule it out and move on or get a diagnosis and seek treatment. Any help is appreciated!

    Tired mama :)

  5. Thank you so much for your quick response Jen! I’ve called Franne and left a message. Hoping an appt. is in my near future :) if, by chance, the results are that I do have lyme, I plan to treat it with herbs. The Buhner protocol seemed to fit my lifestyle.
    I also just read another one of your posts about the tick you acquired over seas. Oh my! I had no idea that transmission could happen so quickly. We are an outdoor family constantly in the woods. We pull nymph ticks off EVERYDAY in the summer! The hip area and armpit seem to be their favorite spot on me. My boys acquire them daily between their toes and on their groin area. Does wearing bright colors make a difference?

  6. Good luck wit that! I have seen recommendations to wear white, just because it is easy to see. For me, I just make sure we do frequent tick checks when the kids have been outside in an infested area.

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