I almost hesitate to write this. Not because it’s been months since I wrote an article but months since I’ve seen a potential game changer. So I write this with fingers crossed. Since the hospital called to confirm my appointment, I’ll accept it (but don’t underestimate the chance for a SNAFU or FUBAR).
Part of dealing with tick-borne illness(es) has to do with the order of addressing problems as well as how to address them.
EMGs of my leg/arm had been taken in 2005, 2006 and 2007. The doctor of the last one was so sure of its thoroughness, he said “you’ll never need another.”
Well, I had one earlier this year that showed peripheral neuropathy, whereas for years as my mobility and balance declined, this could not be found. Why now? And what does it mean?
My guess is that it was not well detected before and got worse because I was not really being treated for my problems — not Epstein Barr, not Babesia duncani (WA-1) and in all likelihood, the survivor of some issues helped Lyme hide in their biofilms, This has led to a demylination, but it lacks the pattern or markers of MS (which most want to say I have). Someone would have had to drop their denial that Lyme can and does survive for me to avoid my present condition. Thanks to that attitude my present problems are extra difficult to eradicate because the have led to my present neurological dysfunction. To have been treated long term means insurance companies, among others with monetary interests here, will not be happy.
Yet while the underlying cause will spark an argument (and I’m sure some will still want me to say I have MS), what I clearly do have as a result is called CIDP — Chronic Inflammatory Demylinating Polyneuropathy. The “chronic” part is where hope for recovery dims. But if inflammation can be controlled, can’t demylination be controlled? The open question is whether or not — and to what degree — can this be reversed?
I have no idea. Frankly, that gets back into the question if it is possible to be properly treated from the beginning. It almost never happens. What now? My initial treatment — after an EM rash and fever of 105 degrees — was 2-3 weeks of Amoxicillen. Just lame and the continued lackt of systematic assistance is why I am in this boat. We tend to be under-treated and when that under-treatment is exposed as inadequate, we are told we have a mental problem because that HAD to be sufficient treatment. We “can’t” have Lyme. It isn’t sufficient. Heck, I didn’t even hear of the word Babesia (associated with myself) until 2012 and EBV until 2013. And that might not be everything. It is no wonder why my lack of peripheral neuropathy became CIDP at some point in the last few years (confirmed in 2015).
It is criminal what is done to people with tick-borne illness for the sake of saving big companies money. In reality, they should be sued for causing my situation to become possibly untenable. THEY should be paying for this. Yet I have had to jump through a lot of hoops to get this treatment and I will have to jump through hoops to get to the infusion center for my treatment (about an hour each way). I have a mixture of excitement and fear. Excited to try IVIg therapy and fear it won’t do enough.