I haven’t written one of these in quite a while. A lot has happened, but I’m not sure any of it assisted my overall health.
I finally found a neurologist willing to talk about Babesia and its impact on my circulatory system. I have one leg/foot very different than the other. It’s like I’m two people at the same time. The color, temperature and volume differ in each foot. The musculature in each calve also provide contrast, though detecting it easily can depend on vantage point.
Anyway, the prescribed route forward involved a therapy called IVIg. It’s an immunoglobulin or immune system boost against autoimmune disease. The diagnosis used to justify this therapy was Chronic Inflammatory Demylinating Polyneuropathy. Certainly, my body behaves in a way that gives credence to that label.
Yet other than some feelings of activity in nerves “waking up” (ranging from involuntary spasms to very painful twinges) I have not seen any improvement in doing this treatment every month for over a year. I kept waiting for it and in the beginning I thought I could get there. But alas it did not occur in any meaningful way to date. It is rather depressing that in a previous checkup the neurologist thought there was some change in strength but this time he seemed speaking more about “maintenance” — as in the fact that I haven’t gone blind yet (something that happens to those diagnosed with CIDP; of course, I don’t know how much risk of that exists here).
During my last doctor visit, I expressed frustration as to why I’m continuing this treatment, especially as the infusion clinic wants me to have a port installed. The alternatives did not seem inviting as Gamunex, the drug I receive, is supposedly less harsh than another methodology. One Facebook IVIg recipient touted getting a higher dose, though I am already dealing with side effects like palpitations (which I treat with Hawthorn) and headaches. Maybe but maybe not? What else is out there? Anything?
I found that the NIH is conducting studies with people with significant neurological issues (mine affect gait and eyesight — I can’t look at a camera straight without double vision). We’re talking stem cell therapy. Indeed, my last Lyme doctor (LLMD) told me I wouldn’t recover any significant mobility without it.
I do qualify, though the neurologist wondered if infection(s) would render me outside their criteria. The catch? The patient is responsible for paying for the treatment. I was very surprised. Aren’t you? Isn’t research like a public service and either it costs you nothing or they pay volunteers? Not here.
Bigger catch? It costs $17K. And it would involve travel. So I finally decided that the universe is pushing me to take a different direction. I started a Go Fund Me to see if I can raise at least a sizable portion of the costs.
I appreciate all shares or the info if you can help, as well as donations. And if you have ideas about how to make this campaign successful, please share that with me. Thanks so much.
www.gofundme.com/lisakazmier
#DitchTheCrutches