Well, there is a soap opera feel to this, and chief contributor to this winds up being the disrespect patients with tick-borne illnesses receive. So thanks CDC/IDSA for the extra layer(s) of bullshit we endure.
No one with Lyme or related illness will ever say "it's better than cancer." Walk a few feet in our shoes. In recent weeks, I have seen evidence of physical abuse, mental torture and even got a small dose of it myself, courtesy of my mother. She has no clue about what she forgets setting me off. In that latest episode, she suggested I could get a steak from the Olive Garden.
I can't believe she forgot what happened the last time she gave me an "unlabeled" steak -- meaning GMO fed and full of antibiotics. It was explosive, it was within 24 hours and it was right in her upstairs hallway, trailing down my body to some carpet. Really? You could forget that? And then you wonder why I'm going postal...
I finally had at least one experience most every "Lymie" knows. Recently, I made a bargain with Satan, essentially. In my state, one can obtain "alternative meds" like a Medical Marijuana card (I'd settle for Low Dose Naltrexone at this point, for something different) only if/when conventional means fail. This "bargain" involved one lab test (negative) and a two week trial of the drug no Lymie wants to take: Prednisone.
This is not my first rodeo with Prednisone. Previously, I took it for months, had IBS issues going on and off it, saw little help with my problems and before that year was out (within 6 months) had to buy my first cane owing to balance/mobility issues. I reluctantly agreed to try 10 mg/3X-d. The experience amounts to what I'd expect: GI distress, IBS issues (despite taking 3 Librax/day), brain fog, severe balance problems. In short, it's a nightmare. And what is it supposed to help? My cold, swollen, red right foot. Marginally helpful and surely zero with the temperature. Even through a sock and shoe, I know when it is refrigerator cold.
So, again, my mother delivers the classic line: the failure of Prednisone is "all in my head." Sure, that's why it don't work. If I had that kind of power, why would I need a doctor or be disabled?
Sure, she's old. She hasn't read much about this. But she keeps hitting every single line that infuriates a person with a tick-borne illness. No, you don't know what it's like. Same went with she told me her back hurts sometimes, as if that's the same thing as a back spasm. Anyone who's had bouts with the latter know the level of dysfunction and lack of control. Tick-borne illnesses also have a lot of control issues with one's own body, though how visible they are and what specifically does or does not happen varies patient to patient. This is why Dr. Richard Horowitz has called Lyme "the great imitator."
This isn't necessarily a diatribe against my mother. She's more symbolic of a lot of angst caused every day by people who don't know better or refuse to acknowledge that they are wrong. That supposed "doctor" who ripped RHOBH Yolanda Foster for her "fake disease" inflicts a great deal of pain and absolutely doesn't care that it goes well beyond Ms. Foster's health. Just today Dr. Horowitz pointed to a Johns Hopkins study citing the persistence of Lyme at a high percentage supposedly after that "short course of antibiotics" treatment. That is, the "short course" fails more than it succeeds. I coulda told them that. I had that treatment and others and here I am in probably the worst shape I can remember. Even my PCP on my last visit said she was worried about me.
She wants me back in physical therapy, for one. I think it's pointless until this ridiculous trial of Prednisone is over and either that doctor helps me or I try somebody else. Indeed, I am looking into going a variety of ways with various types of therapy/practitioners. Maybe chiropractic, maybe biofeedback, maybe PT, maybe Network Spinal Analysis. Maybe a new LLMD, maybe not. Maybe returning to a previous OB/GYN, maybe not. Since I have not seen possible bills and such from what I have already done, I want a better idea of where I stand before I press ahead.
I've also had a delay in the kind of nutritional therapy I want based off my 23andMe raw data and report I obtained from it. The therapy was going to be approved by Medicare but has hit a snag. The doctor trying to offer it said "blame Obamacare" but I don't. You see, the GOP had been fixing to make cuts in Medicare for a long time and built them into any budget or attempted repeal effort. So cancelling the Affordable Care Act will not somehow restore Medicare's ability to cover a therapy I want. I just don't see that simple substitution.
In any case, I received word from my insurance company that if I continue to want a premium waiver owing to my present (and unemployed) condition, I need an attending physician to back it up. This also may give me the opportunity for her to do the kind of pre-screening that must occur before this nutritional therapy can begin (it's an IV therapy, which I think is necessary given my gut issues).
Here's the kicker: for most of my life I was terrified of needles. As a kid, three nurses had to hold me down for a blood draw pre-surgery (adnoids removal). I used to need to take Xanax or Valium for a blood draw, MRI or similar scenario. Now I use EFT (Emotional Freedom Technique) and I get through it. I never planned on being a pincushion or seeing so many doctors. But here it is.
And I have to figure out my own way through this maze, thanks to the assholes who refuse to either acknowledge or aid those who really need help.
Mon Feb 09, 2015 at 11:54 AM PT: Got the doctor who prescribed Prednisone to tell me I could stop taking it now. Even an IBS attack can't dampen my joy over this.