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Jean Ann's Story

My story begins on a hot summer day in northern Michigan. My hubby and I were vacationing at his parents' home, which was located in the boonies, on a lake, in the woods. There were deer in the yard on a daily (and nightly) basis. One day hubby was washing the boat and I was sitting on the lawn watching him and chatting with him. I sat there in one spot for over an hour ... probably closer to two hours. I noticed nothing out of the ordinary or felt nothing out of the ordinary.

Three days later I awoke with a bull'seye rash on the back of my right thigh. It was big, and growing bigger by the minute. It also itched like crazy. Later that day I started feeling sick ... like I had the flu. But it was July so I couldn't have had the flu!!! Mom-in-law was trying her best to find something to put on the rash that was threatening to take control of my leg. She gave up and called her local pharmacist. As she was describing the rash to him, and telling him that I was also sick, he told her to take me to her doctor immediately. He thought I could have Lyme Disease.

So, off to the local doc we went. I was protesting and mumbling all the way ... didn't have time for this ... had to go fishing and enjoy what was left of our vacation. The doc was nice and I enjoyed meeting him. However, I did NOT enjoy what he had to say..."If I were a betting man, and I'm not, but if I were I'd bet the farm on Lyme Disease." So, now off we go to the hospital for blood tests and then to the pharmacy to get my prescription for antibiotics filled.

The flu-like symptoms continued ... the rest of the vacation was history (For me anyway). I spent it sleeping!! Back home to OK we go(And I slept for two days in the car while poor hubby had to do all the driving). I reported in with my own doctor and told him what was happening. He called the MI doc and requested copies of the lab work. Many weeks later ... or so it seemed ... the lab work comes back. The Lyme titre is positive. High positive! So, I continue the antibiotics for six weeks. Now I have another blood test and it comes back high positive - still.

By now, several months have passed and I am still having flu-like symptoms along with the extra added attractions of a stiff neck, arthritis in my knees and fingers, extreme fatigue (like I had never felt before) and a few other assorted goodies. My favorite was the "losing" of words. I would be talking along and all of a sudden totally forget what I was going to say. Or the word I was going to say was gone. Totally gone! Like someone had reached into my brain and taken it from me. Now, this was probably the most frustrating thing I had ever experienced (And still is...but more on that as I continue).

My doc is frustrated now too so he sends me to a Rheumatologist in Oklahoma City. He's cool! Nice guy. He takes pictures of my "Lyme fingers" to use in a study he is doing (Very photogenic fingers). He also thinks I will improve with a 14-day course of IV Rocephin. Sooooo, off to the local hospital I go, Rocephin in hand. I dropped the stuff off and made arrangements to report there every morning at 8:00 to sit for an hour while it drips in. stuff here!! The next morning I present my arm to the nurse and she tries very hard (trust me on this) to insert the heparin lock. She couldn't find a good spot so she put it on the top of my right hand. I remarked then that I was a secretary and had to type a lot...and am also right handed. She assured me that there would be no problem. Famous last words!!!

The thing stayed in for ohhhhh, about three hours before popping out. The next morning a different nurse removed it and placed it on the side of my left arm. Neat! It worked! And it was really attractive, especially the pretty white netting stuff over the top. That was there to stop me from catching it on something and ripping it out of my arm. But it added a touch of color to whatever outfit I had on. :-) We went along fairly well for eight days and then my arm got infected from having the lock in one place. Cellulitis City!!! Time to change the lock. My doc happened to be doing rounds when this was going on so he stopped by to chat. When he saw how infected my arm had become he raised holy hell and chewed some nurse butts (That was pretty neat!!). And on top of everything else, I was allergic to the tape they used in the hospital so I had to take my own tape!! Geez!!!

Again, things were fine until day 12. I won't scare you with all the details but let me just say ... I had the worst delayed reaction to Rocephin that anyone ever had. The doc was truly concerned for my well-being. And so was I!!! Scared me silly!!! But as you can tell, I survived and carried on. After all that, I had another blood test done and the thing came back even more positive than the previous two. Amazing!! So, back to the OKC doc I go. We cussed and discussed and I made the decision to stop treatment. My option was to stay on antibiotics for the rest of my life and since I am not a pill-taker, or a big fan of IV's, I chose to not do that.

It is now eight years later and I still have flares. Apparently the disease is here to stay but you know what? I've gotten used to it. Don't like it...but am used to it. The fatigue gets unbearable at times and when that happens I give in to it and sleep. That's the best thing for me to do. I continue to have headaches and neckaches. I have had Lyme induced Meningitis. I struggle daily with the neurological problems. Forgetting words is horribly frustrating. As you can tell, I am a "wordy" person and when I can't think of the word I want it really, REALLY pisses me off. I seem to have a learning disability now too and that is also extremely aggravating. I just can't learn something as fast as I once did. I used to think I was smart ... now I really wonder!!

So, that is my story. I hope I didn't bore you too much. I deal with the flares when they happen and go on with my life. There are many, many Lyme patients out there who are in much worse shape than I am. If you know someone with Lyme please offer to help them in any way you can and give them big hugs!! If you have LD, you have my sympathy!! Be well!!

Jean Ann

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