In early Sept, over the course of a few days, I felt like I was getting the flu (everything but throwing up). A week in, I felt so horrible and running a fever (everything from muscle aches to the worst fatigue in my life to heart issues), I went to the doc who said despite the absence of a bullseye, he strongly felt I had Lyme (and he added he treated more people for Lyme this year than the last few years combined). He had me take a Lyme test, explaining the test might be negative since I might not have enough antibodies in my system. It was negative but he put me on 3 weeks of Doxy just in case. I felt much better within a week, but two more weeks in, due to side effects (including two visits to the ER within two weeks for unexplained a-fib), he took me off of it.
Within a few days, I was worse again to the point of not being able to work (severe fatigue and cognitive issues). He had me take a second Lyme test (despite knowing that you can test negative after being on antibiotics). It was negative and he sent me an email that basically said, "Everything looks good! Take care!" (*insert crickets here*). I look great on paper, so there can't be anything wrong with me?
Since that time, trying to figure out what's wrong with me since I "couldn't possibly have Lyme," [even though I have pretty much every symptom]. I've asked my primary care doc to send me to anyone who can help me. I've been to everyone from cardiologists (who suspects a sleep disorder) to pulmanolgists (who told me it was all in my head, that only "morons" try to out-think illness, and suggested maybe I'm bipolar ?!??) to neurologists (who also want me to take a sleep study or put me on narcolepsy meds despite my not having any symptoms of narcolepsy) to gynecologists (to test for early menopause and other issues). I've been blood tested for everything from RA to cortisol levels to lupus, thyroid, you name it.
I have been off of work since mid October, wake up feeling like I'm 90 and hungover, can't function and most of the time and I'm too tired to even read or watch TV. I have splitting headaches, muscle aches as if I worked out the day before and keep having episodes of vertigo. I'm usually very mentally sharp (one co worker once commented that I say one-liners while other people are still thinking of a joke). Now it takes me forever to think of stuff and I'm seriously absent minded, losing things, and doing things like stopping for green lights -- on days I dare to drive. Most of this time has been my waiting weeks for specialist appointments who then make me wait weeks for tests. In a week, FMLA will have been used up and I'm no closer to being healed than I was in early September. I live in a really small town and even average "specialists" are an hour away. Like a lot of people here, I am absolutely at the end of my rope and thousands of dollars poorer due to medical bills even with insurance coverage.
I'm now scouring the internet looking for anything I can on Lyme. There is no way I was fine one week and not the next and it's all in my head. In the past two months, I've given up red meat, dairy and white flour products. Sugar, eggs and processed foods (including sweeteners) are next. I've ordered everything online from adrenal support supplements to iodine to (arriving today) cat's claw and Japanese knotweed. Do I know what I'm doing? Absolutely not. But I'm so desperate to even feel 10% better, I'll do just about anything at this point.
To the doctor who said this may be caused due to "mental issues," it's quite the opposite. NOW I'm depressed because I don't remember what it was like to feel okay and everything seems hopeless.
Thanks for "listening" to anyone who read this (it took me forever to type). I just needed to vent and explain who I am here.
Posted by Lymetoo (Member # 743) on :
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