Sunday, October 23, 2016

waiting on medical tests bites

Bad pun. Sorry. It's just an expression that fits.

I don't remember being bitten by any tick in recent years, but I'm sure that's what happened. I do recall a tiny (and I mean just a couple millimeters) brown bump on my skin that I thought was a blood blister simply disappearing one day as suddenly as it had appeared. I never thought of it then, but I think of it a lot now.

I'm waiting on lyme disease testing. I've been to a doctor outside the normal clinics who has an open mind and takes the time to consider EVERYTHING.

He suggested that ALL of my symptoms over the last year and a half fit with Lyme Disease. I've been researching everything I can since then while waiting on the Igenex testing for Lyme and co-infections. I believe he's right but am waiting to move forward on treatment until we know what exactly I have. The rising white blood counts I've had on blood tests over the last year and a half point to a growing infection, and LD fits.

I have good days and bad days. Mornings are usually my best time of day and then it's generally downhill the rest of the day, but occasionally I have a good day all day. The worst for me are neurological symptoms--brain fog, memory problems, severe insomnia (still!), and air hunger being the most intolerable. There are also itching, pins and needles, and crawling feelings on different areas of my skin plus aches and muscles twitches and headaches. Some days I can't tolerate sunlight. Noise stresses me out something fierce, and it doesn't have to be a lot--several babies fussing in church one day ran me out because I couldn't take it. I can't describe the tension that rises up through me into an anxiety attack. And then there's the sometimes debilitating depression. It's worse than any simple blues when it comes on. This isn't all in my head but my brain and nerves feeling like they're on fire.

I've learned to deal with it through supplements and diet and have managed to slow the degradation of my quality of life. I'm holding pretty steady while trying to patiently wait, and am getting my nutrient levels up that have been shown to be deficient and some that I suspect to be deficient. I still have some histamine intolerance, but an immune system under attack will call in all its forces, including the mast cells that release histamines; unfortunately having the immune system going full-bore for so long is stressful on the endocrine system, which is where the Hashimoto's and adrenal issues have come into play.

The big picture in my search for the root of my health problems that came on a year and a half ago is not what I would have expected. I'm relieved to find an answer and anxious to get rid of this. But I've had it this long and understand that I may never be able to rid my body of the bacteria after all this time. From my understanding, late-stage Lyme really can't be cured but it can be treated and put into a state of remission indefinitely, as long as my immune system stays strong.

What's more frightening is that it's here. I didn't necessarily have to go out of state to get the disease. In my research, I came across some information about Lyme in North Dakota, and these are reputable sources:

NDSU Extension Service--https://www.ag.ndsu.edu/cpr/horticulture/ticks-with-lyme-disease-in-nd-05-05-16

CDC-- (New Lyme-Disease-Causing Bacteria Species Discovered) http://www.cdc.gov/media/releases/2016/p0208-lyme-disease.html

Entomology Today--https://entomologytoday.org/2014/09/04/ticks-that-vector-lyme-disease-move-west-into-north-dakota/

I'm making it my mission to spread this to any doubters or naysayers who think ND doesn't have LD--it's here, has been for some time. We have deer ticks infected with Borellia in our state, and not just the old B. burgdorferi but a new species that causes Lyme, one that may not show up positive on the current tests, one called B. mayonii. Once I get my test results, you can be sure my primary care physician is going to get an earful from me, especially when he was so dismissive of my symptoms being "anxiety" He'll be getting a lyme education, so hopefully the next patient doesn't have to go through all that I have...When it comes to our health, we have to be our own best advocates. "Never give up; never surrender."

I will update again when I have more to report. It's been four and a half weeks since my blood went out to the lab for testing. I hope to have the results any day now.

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