KV’s Lyme Story


It CAN happen to you.  Imagine waking up one day and not being able to remember. Now imagine mixing that with excruciating headaches, vertigo, joint pain, hand tremors, vision problems… I’ve wanted to write this “rant” on Lyme disease for over a year and a half now. Unfortunately, due to my Lyme disease, I have been unable to write more than a sentence at a time. It’s very hard to take the memories I do have and put them in paragraph form without sounding stupid.

I have a different outlook on life since just a year and a half ago I was convinced I was dying. Please, no pity, and please, do not feel sorry for me. Just read this and put it in your memory bank. You or someone you know might need this information someday. I’ve already saved at least one person from going through the hell I’ve lived up until now.

It all started with horrible pain in my left knee. I dismissed it as an injury I incurred after twisting my ankle one summer. Then the other knee started to hurt. I went to the doctor and was told I did not have Lyme . I was also told that it was probably mild arthritis. This started in my early 30’s. I went for acupuncture and took loads of ibuprofen to deal with it. (It restricted my activities in a major way.) Years passed and then the pain started to migrate into my neck, then into my left elbow, left shoulder and then both of my wrists. The last straw was when I could barely move my left foot. Anyone who knew me would have known there was something terribly wrong. I HAD the worlds most flexible feet. Back to the doctor I went. I asked if I could have another Lyme test. I was told that since I tested negative just a year prior that I couldn’t have one. I was never told that the test has one of the worst reliability records in the history of medical testing. I never saw the negative blood report that says right on it that a negative test DOES NOT guarantee that you DON’T have Lyme disease.

January 2009 It started with horrible head pressure and squeaking in my ears. The squeaking turned into rice krispie crackling sounds that would wake me from a deep sleep. Then the excruciating headaches came.( I was convinced it was a sinus infection.) I talked the doctor into antibiotics and met with a specialist. After having hearing tests, and the like, he concluded it was not sinus related and that it sounded urgent since I was losing my memory. Neurologist concluded I was ibuprofen dependent and that was what was causing all of the problems. He sent me home with steroids that I never took. (DO NOT take steroids if you think you might have Lyme disease.) I was written a prescription for physical therapy for my neck problem. In just a few short weeks, I went from bad to worse.

The headaches were constant and worse than any migraine I had ever experienced. No medication could touch them. I loss the ability to read or look at the computer because of the horrible vertigo. I could barely walk or sit. Every joint in my body felt like it was on fire. At that point, I couldn’t even remember the simplest things. Through all of it, I only missed 2 weeks of work. I would wake up and try to get things done before noon. I could not function past noon. It took me over two hours to get dressed and ready. (Try getting dressed when every joint hurts more than you can imagine. ) I worked, through my agony and memory problems ,for a whopping two hours a day. I would then head off for 1 1/2 + hours of physical therapy 2-3 times a week.(Physical therapy lasted 7 months.)

I couldn’t remember words, sentences or how to type. There were times when I would put the wrong words in a sentence. My short term memory was gone and I could not remember what I had said just seconds before. I could not remember the sequencing of things I was doing on a daily basis. I couldn’t remember how to make my breakfast. At night, I’d get in the shower and not remember if I had washed my body or hair. I’d stand there forever trying to remember and would often do it 2-3 times , just in case. I saw a bunch of really clueless doctors. I was eventually diagnosed with Fibromyalgia by the rheumatologist. He walked away saying- he didn’t think I had MS. He highly doubted I had Lyme. IDIOT! He gave me medication that said right on it- could cause memory loss. If I ever see him again, he probably won’t see the light of day. Hopefully, I’ll remember what he looked like. After a bunch of my friends suspected Lyme, I decided to pursue a Lyme literate infectious disease specialist. I didn’t go in saying that I thought I had Lyme. I gave her 7 years of records and all the medical tests. One test came back indicating Lyme was very likely the candidate for my misery. She saved my life. I am now going on a year and a half of high dose antibiotics. It’s very controversial. If I had chosen the previous diagnosis, I would probably not be writing this right now. I can guarantee that I would have no memory, be on disability and be wasting away.

IF YOU GET THE LYME RASH, YOU HAVE LYME DISEASE. If your doctor says you don’t – find one that will give you the antibiotics that are needed. (I wouldn’t settle for less than a month of them) Not everyone gets the rash. Please read the facts here- http://turnthecorner.org/content/facts-about-lyme Common disease vectors are mice, robins and deer. There have been cases all over the U.S. and around the world. PLEASE BE INFORMED. DON’T FORGET TO DO TICK CHECKS AND KNOW THE SYMPTOMS OF LYME. A special thank you goes to Greg (for never giving up and letting me keep my job), Lisa (for helping sort out the facts), Randy (for listening and finding me a doctor), Cindy (for sending me a big Lyme info packet from NH), Tim ( World’s best physical therapist & “cheerleader”) and John (for saying “Are you sure you don’t have Lyme disease?) THANK YOU will never be enough.

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