I had put up a post on FaceBook last week telling those who had a NetFlix subscription about a movie called “Under Our Skin”. It’s a documentary made in 2009 that discusses Lyme Disease, what it can do to a person, how it kills, what the controversies are over long term and non long term treatment (money, huge surprise there huh?). It also follows a few patients on their never ending journey. I personally identified with the young blond girl they profiled. While I haven’t yet experienced the severity of her seizures I can surely understand her inability to swallow, walk, be too tired to even talk. The movie for me, was highly upsetting and very frustrating because I have had Lyme Disease and 2 other tick illnesses for almost 17 years now.
Having moved to South Carolina in 2002 for financial reasons, I haven’t had anything in the way of treatment since then and it’s now 2011. I also lost my ability to swallow 99.9% of all solid foods which as one can imagine reeks havoc on my weight and the rest of my body. I have had stomach testing done etc and all I am ever told is, I have a small sliding hiatus hernia, GERD and massive inflammation from my throat down to my small intestines. With the added comments that “We don’t understand why you have such a hard time swallowing”. Of course they don’t. They don’t understand Chronic Lyme Disease. I have tried all their medications which either did not work or made things worse and that is because, it’s not what I need. I have a brain infection now. The Lyme infection has moved into my brain and it is affecting all the muscles in my body including those responsible for swallowing and digesting food which is also becoming a past time of my body.
So, the other day, once again, I began making some contacts in the Lyme world to see if there are ANY doctors here in the South who treat and understand Chronic or Long Standing Lyme Disease and, as expected. There are none. Zero. Zilch. I did contact a doctors office in North Carolina, which would have been a 5 hour ride and absolutely grueling on my body but so worth it if I could finally have a doctor who could help. Sadly, I was told, NO doctors who will treat Lyme Disease in the entire COUNTRY will take insurance any longer because they fear that the CDC will contact their medical boards and have their licenses revoked to practice. You’re probably wondering why. Simple. The CDC has accepted treatment guidelines from a group made up of either 14 or 16 doctors who ALL have financial stakes in medications etc for the treatment of Lyme Disease. These doctors, and I say that VERY lightly, then put out useless guidelines that entailed any patient who complains of still being sick after “3 weeks of treatment” is either A) mentally unbalanced or B)Never had Lyme at all. This then gives way to the Insurance companies to deny claims. It’s all nice and tidy isn’t it?..
Now, here comes the doctor who WANTS to help patients like myself but, they can’t because if they do that means sometimes, YEARS of treatment and once the insurance company gets wind of this, they contact the CDC who then contacts the medical board and there ya have it. Before the doctor knows it, he’s being investigated, hauled into court numerous times and no matter what he does, ultimately, he will be sanctioned and or lose is medical license along with every dime her or she has trying to defend themselves in a losing battle.
After learning no Lyme Literate doctors in the entire country will take insurance for someone like myself I then asked this nice woman in N.C., “well, how do people pay for treatment?” her answer, “Unless they are rich, they don’t.” I then contacted another group made up of doctors who are trying to help people like me and was told they only know of “TWO doctors in the entire country who will take insurance but, they won’t treat agressivly like you need them to for the reasons you already know but, some treatment is better than nothing.”
My options now are, as far as I know…Stay here in the south and do what I’ve been doing which is praying and nothing more, or, sell everything we own with the exception of the clothing on our backs. Rent a home back north and see both of these two exclusive doctors who won’t treat like I need to be treated in the hopes it will work somewhat and not put me back where I was 16 years ago which was, bed ridden.
Now you know why I haven’t been feeling well emotionally on top of not feeling well physically. I don’t see I have many options unless of course somehow I win the lottery, or some rich kind person comes along and offers to pay for my treatment until I need it.. Both of which won’t happen. I do know that if something doesn’t happen that eventually this disease will kill me but, I don’t have any options because the bureaucratic bullshitters and money hungry hoarders at the top aren’t giving me any. I honestly don’t know how these people sleep at night..
“First Do No Harm”… not in this day and age..