I tell myself often that I should be writing less about Martin’s breakthrough performances and more about the process of biomedical recovery and homeopathy: what his blood and urine test results show, which supplements we’re using, how antimicrobials are affecting chronic Lyme disease, how I’m tweaking his diet and why.
Recall the correspondence I had with Martin’s biomed doctor about the hyperactivity Martin was experiencing. I guessed that the culprit might be a yeast resurgence. The doctor thought we were too quickly increasing borrelogen and banderol—hose are antimicrobial herbs we use treat Lyme disease and bartonella, a common Lyme co-infection—without enough time for Martin’s body to adjust. She suggested that we go off banderol temporarily, and that we build the borrelogen more slowly. Relevant to this post, she also wrote, “Please start the other mitochondrial support as we discussed, as the supplements should help not only ‘floppiness’ but also his ability to handle the anti-microbial herbs.” (She was responding with my terminology. I’m pretty sure that “floppiness” is not a real medical term.)
At the time, Martin had been off target mitochondrial support for a few weeks; we use MitoSpectra, and I was unhappy that our supply of pills had gone bad. I looked into MitoSynergy but decided against it, because its components did not seem to be in bioavailable form, e.g., it has standard B6 instead of p-5-p, and folic acid instead of 5-methyl folate or folinic. I also thought about giving Martin the mito-support elements separately: levocarnatine, CoQ10, B-complex. On the other hand, Martin takes so many pills and drops already. Where possible, it reduces the protocol burden to use combined forms, even if the combined forms tend to be more expensive. And blah blah blah. Meanwhile, Martin was off mito support while I mulled all this.
MitoSpectra’s customer support offered to replace the spoiled pills and told me to keep the next batch refrigerated to prevent them from going bad. After speaking with the biomed doctor, I decided to put Martin back on MitoSpectra. I expected that the mito support would improve Martin’s “floppiness.” I was less certain why the doctor thought that it would help with hyperactivity and overload from the antimicrobials.
It did. Immediately after speaking with the doctor, I took Martin off banderol and reduced borrelogan to just one drop, to start building again from there. That helped. Slight hyperactivity lingered, as did trouble falling asleep, and I worried about starting to build borrelogan again, however slowly. Then the new MitoSpectra arrived, and within a day Martin’s behavior leveled off.
Why? Even after five years of biomed, during which I’ve known that Martin has mito processing issues, I still don’t fully understand how the mitochondria fit into all aspects of Martin’s health. I associate Martin’s mito issues with his lack of energy and low muscle tone; in the earliest days, before biomed, Martin spent continuous hours lying on the floor, usually on his side, usually pushing a toy back and forth or engaging in some other repetitive behavior. We’ve remedied that, and made progress on floppiness and exhaustion. Yet mito issues continue sprinkling their special mischief over Martin’s progress.
Mitochondria organelles are the power plants of human cells. Their job is to turn oxygen and sugar into adenosine triphosphate (ATP), the energy that powers the cells to do their assigned jobs. Mitochondrial disorders, as I understand them, can be extraordinarily serious and can result in complications ranging from undergrowth and developmental delays to seizures. Conventional medical wisdom holds that mitochondrial disease, in the true form, is genetic and incurable, though treatable in ways that may assuage its effects.
According to the CDC, “More research is needed to find out how common it is for people to have autism and a mitochondrial disorder. Right now, it seems rare.” The CDC’s page, I note, has relatively little information about mitochondrial disorder, and much of that limited space is devoted to autism (and, you guessed it, vaccines). The CDC’s need to deny an autism-mitochondria connection makes me suspect that the question is being asked often, and a link in fact is suspected. TACA calls the role of mitochondrial function “[o]ne of the most exciting areas of research in autism spectrum disorder.” Even Autism Speaks (hardly cutting-edge science, in my opinion) offers: “Over the last decade, there has been great interest in the possibility that mitochondrial disorders may underlie some of the symptoms of autism spectrum disorder (ASD). Currently we believe that around 5 to 10 percent of children with autism have mitochondrial dysfunction as the underlying cause of their symptoms.”
Martin has mito dysfunction. That is diagnosed. No question there. So what is the mito dysfunction doing? Why would it cause increased hyperactivity when he’s dealing with antimicrobial Lyme treatment? Maybe cells without a power supply can’t fight the antimicrobial effects like they should. Maybe mito dysfunction keeps the entire system in such precariousness that what should be a mole hill—launching the battle against Lyme—morphs into a mountain. Maybe Martin, even after he functionally recovers, will still need mito support. Maybe he won’t.
The reason I shy from writing about the process of recovering Martin, instead of the victories and setbacks, is fear of admitting how little I understand about that process. (Also, it hardly makes for exciting writing.) I am a humanities-type mom wading through science-y stuff. When I try to write the science, I perceive my own shortcomings.
As of today, Martin is off banderol and rebuilding borrelogen slowly. The hyperactivity has dropped, considerably. Emotional dysregulation, on the other hand, is substantial. Martin is anxious, and having meltdowns.
Despite the mitochondrial support.
Because—who knows?
Finding My Kid 