Come find the Sun

Lyme Disease: A first hand experience

on March 15, 2013

I’m not sure why I haven’t written this blog on my experience  with Lyme Disease. Maybe I’m still harboring deep resentments from the trauma of it,with the medical community and with some of my family, and how a bug as small as a freckle almost killed me.

It’s almost Spring again and my mind is already on the reemergence of those little buggers. Wondering if it’s been cold enough this winter to kill them, and if not, there will be double the little invaders to watch out for. As you can see from this map, it’s not just Connecticut’s problem anymore.They’ve been hitching a ride with the migrating birds and spreading around to places where the medical community has no clue what to do for the people suffering from it. Not that the medical Community here in Connecticut knows exactly what their doing, even after 25 years it still seems to be a mystery.English: National Lyme disease risk map with 4...
This journey began for me, while on vacation with my family , in the summer of 1990. I noticed a large red swelling on my arm and felt like I had the flu. After a few days the blotch and the flu symptoms disappeared and I felt better and my life went on, back to work, kids, husband, house. But I never really recovered, I was exhausted all the time. The winter of 1991 the violent headaches began, vomiting, weakness, terrible pain in the back of my neck and the feeling I was going to pass out, was always present on a day-to-day basis. My nightmare was in full swing. My body was telling me something was seriously wrong and I was still trying to do it all. Denial and I come from some very stubborn stock, I’m guessing.

The doctors couldn’t figure out what was going on, they thought it might be Lyme Disease but, all the tests were negative. (at that time the doctors would NOT treat you without a positive Lyme test) I had CAT scans, MRI’s, Spinal taps, you name it, I probably had it done and still no answers, but I kept getting sicker. By this time my vision was double and failing,my left arm and my legs were numb and I couldn’t rely on their functioning. Feeling this way became part of my life and I was still going to work. It took all my strength to do it. Some days I don’t remember how I got home. Scary. cognitive issues began to be noticeable, I couldn’t remember anyone’s name at work or if I had finished a task. I would double-check everything 10 times, which means I didn’t get a whole lot accomplished, don’t even know how I managed it for so long. MY work suffered, my family suffered, and I felt like I was slowly dieing.Still the doctors were grabbing for anything to explain what was happening, MS,Epstein Barr Virus, it was all in my head, Depression. There is nothing like a doctor telling you that  your NOT sick, when your body and mind are falling apart. Looking back on it now, they were blaming ME for THEIR failure. Why couldn’t they just say ” We don’t know”, instead they devastated a very sick woman hanging on to their pride. The stress of this betrayal by the medical community only made me sicker, because it was not just the medical community that was questioning my sanity but some of my family members as well, they believed the doctors! My husband Scott was the only one that believed me. God bless him. He could see the muscles spasm up and down my back. He was and still is my champion. With his help we finally found a doctor that would treat me without the positive Lyme test. 8 weeks of IV antibiotics and my body couldn’t handle any more,it had enough. Walking was only done by holding onto the walls and that was to the bathroom. I  was pretty much bedridden for the next 2 years. My mind was mush, my speech was slurred, and on occasion I couldn’t remember my children’s names. Nothing seemed to work- at least not together or at the same time. Chills, sweats. My body needed to heal. Slowly, very slowly my body started to regain some strength and I needed to find a way to help my body recover.

In my next blog I’ll tell you what worked and what didn’t.  I hope someone else suffering with this disease can benefit from my trial and error of recovery. Because I did bring myself back to a functioning vital human being!


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