Previously, I have written several discussions of Richard Horowitz's fine book on Lyme and Chronic Disease called "Why Can't I Get Better?" Putting these concepts into practice and actually recovering takes a lot of hard work, particularly if your support system does not include a sizable income to pursue expert medical help. Even a rudimentary knowledge of Lyme/coinfections and treating these will make you recognize the incongruities between understanding your situation and endeavoring to improve it.
I am not blessed with a great deal of excess cash, having likely been let go from meaningful employment because I posed a liability risk. Yes, my gait is that bad. While I can still walk, I have little sense of balance and the ways one needs to shift weight to amble forward steadily just isn't happening as it should. It's a clearer issue than any brain fog or pain and competes with strabismus for being the most obvious problem I have.
Medical insurance for someone in my position is always somewhat strange. The need to see doctors certainly exists, but finding one who will help me is often another matter entirely. Because many MDs who specialize in seeing Lyme patients (Lyme Literate MDs) feel it imperative to use longer doses of pharmaceutical medication, often antibiotics in some rotation, insurance companies have helped muck up their ability to do this and remain in any insurance network or even remain licensed to practice medicine at all. I and many other Lyme/coinfection suffers find it scandalous that the CDC guidelines essentially require two different positive tests to treat for Lyme. Moreover, the typical labs conducting said tests only screen for one strain, making the tests of very dubious value. In fact, I only got tested for co-infections on MY request, which demonstrates how much the patient has to know. The fact that my Western Blot test falls below their standards for positive while my ELISA test is strongly positive means I have to treat myself for Lyme, too, because a doctor taking insurance cannot.
Nonetheless, as Dr. Horowitz ably shows, a chronically ill person with Lyme/coinfection(s) stays ill because other things are wrong and require treatment. Hence, the need for coverage and doctors remains, regardless. Well, I endured a major slog to actually get some coverage for 2014.
I knew for well over a year that my NJ self-purchased policy did not meet the minimum standards of the ACA. If I could buy better I would. I could not stand that one test essentially shot most, if not all, my allowance for testing. For example, one MRI fairly early in 2013 did me in, even though that insurance did not cover the entire cost of the test (I will be paying $56 a month well into 2014). Later in 2013, I had a urinalysis done for a suspected UTI and it cost $103. I'm sure I have not seen the last of medical bills for 2013, either, as a blood test for an infectious disease doctor should show up in another month or so (the test was in early December).
So, I am very glad to not have that policy, frankly. The last thing I wanted to do was keep it. Indeed, yesterday, that insurer called my cell phone, likely to try to entice me back into that plan. No, thanks.
I live in NJ. When, in early November, I finally got information from the healthcare.gov site (with help from a Navigator who specifically works with disabled people), I found that I should be eligible for Medicaid. Well, I had gone to my county office of social services weeks beforehand to ask about the Medicaid program for 2014. It was October and a social worker told me that THEY DID NOT EVEN KNOW. WTF? Add your own Chris Christie bridge joke here. Another Bridge to Nowhere?
Anyway, in early November, I put in an application for Medicaid online and received an acknowledgement that stated I would hear within 45 days. When December 23 came and I heard nothing (which was day 45), I went there and was interviewed in person. I must have gone to that office at least six times and called several additional times. Their response to my online application actually showed up on December 24. They required I come in. Delay, delay, delay.
I said on more than one occasion I needed action by the end of January. I am on Malarone based on continued positive tests for the coinfection Babesia (it's a parasite akin to Malaria and attacks red blood cells). I only had only enough pills to last through Super Bowl weekend. I even went there on Friday after calling on Thursday of that week.
Funny that they told me it was in the mail. It couldn't have been. The letter about Medicaid eligibility is dated February 5 and was postmarked February 6. I got it on the 7th (my proximity to that office is why I knew it wasn't in the mail when they said it was).
What money I am given (usually by my mother who is retired btw) goes to a plethora of supplements that I have been guided to take by what someone like Dr. Horowitz has written or what other Lyme/coinfection patients have written (we advise each other because the medical profession en masse often ignores us). In case you want to know, here is what I currently take in addition to the Malarone (which I learned needs to be taken with a fat -- by others who've taken it, not by a doctor): Zeolite, egg protein, various greens (wheatgrass, chlorella, spirulina), probiotics, Hawthorn (for palpitations from the Malarone), Adrenal Support, Thyme (oil), Cryptolepis, Japanese Knotweed, Turmeric, Black Cumin Seed Oil, Stephania, Grapefruit Seed Extract, Liposomal Glutathione (on days I use a FIR sauna), Liposomal Progesterone (occ. as per cycle), Lithium Orotate, Artemisia, Ashwagandha, 5-MTHF. If you don't understand any/all of that, someone you know with Lyme/coinfection(s) will. I take a lot of supplements because I can buy those but also because I think that the right combination will help me recover. It is finding the right combo that may not be there yet. The answer sure is not doing less. It may be a substitution; it may be an addition. It is hard to know when you have to be your own doctor and you never studied medicine or herbology.
If everything with a NJ Cares HMO (Medicaid in NJ) works out, I may in fact be able to pursue seeing a LLMD (integrative or not) who can review what I have done and suggest what I should do, perhaps by testing me for either where I stand or on things not formally addressed thus far. I would like to walk like a normal person again, for one.
I am making Herculean efforts imo to get better, just like I went out of my way to get healthcare and how I have continued to put in a countless number of job applications. It seems to me THE LEAST that could be done for me is to facilitate some healthcare provision to enable me to maximize my potential to get better. That is, for someone to invest in my recovery. I was a productive citizen before. I would like to be one again. I was good at what I did. Frankly, I still think I could do it in my diminished state, but because I do not LOOK LIKE I can, I am not given the chance to see if I can.
Given the way things are, I do not think that asking for an investment in my recovery is too much to ask.
(BTW: If you want to know what I did -- I have a PhD in history and taught college courses to thousands of students before that door was closed on me. I say that I could likely still do it because the issues I had caused by Lyme/Babesia began BEFORE I finished my degree and I had taught thousands of students as I declined. The only thing I ever asked for was a nearby parking space and classes that were not back-to-back on disparate parts of a college campus.)