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Hi everyone, Im new to this site, but I already love it! Everyone has been super nice and supportive. Thank you. I thought I should tell my story, and if anyone has questions or anything in common please post back  I was bitten by a tick when I was 3 yrs old, my mom found it in my hair it ws embedded in my scalp. She doesnt know how long it had been there, she thinks 24 hours at least. We lived in michigan so ticks are fairly common. because it was on my scalp I never got a rash or anything. Skip to 9 years later..... I am now 12 and traveling from Kansas (where i now live) to Indiana to visit family. On the way there we stopped in St. Louis for the night, but when I got out of the car to go into the hotel I could hardly move I hurt ALL over so bad! I felt like I had a high fever, I soaked the sheets with sweat, I couldnt move my neck hardly at all. My parents thought I caught some sort of flu bug. The next morning I was beter but still felt bad. A few days later I woke up in the middle of the night with horrible stomach pains. So my mom thought it was my appendix and we rushed to the ER in Indiana. The doctor there said it was not my appendix but of all things it was Pancreatitus. Now for a 12 yr old to have this is pretty rare. The only thing they could do for me was have me go NPO ( nothing by mouth) and dope me up on pain meds until the pain went away, and then they could introduce food again slowly. I was in the Indiana hospital for a week and then released only to end up back in the hospital in Kansas a few weeks later. This went on for years...anytime i would have a "flare" the doctors assumed it was pancreatitus , take food away had give me demeroyl. I got down to almost 80 lbs at one point b/c of this. My times spent in the hospital were full of random tests the docs did to try to figure out why this kept happening. I had every test done..Upper/lower Gis, endoscopies, Ct, MRI, tested for CF, MS,had a bone marow biopsy to test for leukemia, had a lymphnode removed to test for lymphomia, they took my gallbladder, appendix im pretty sure just to elimate things. And countless blood tests. I was told .... You are only here for the pain meds Your illness is like having a broken leg that gets hit by a bat and just never heals ( I still dont know what that means.) Im doing this for the attention Im bi polar Im depressed I just have to suck it up and deal with it, there are people worse off. You have Fibromyalgia, and a possible form of MS...etc... I missed TONS of school , lost friends.... this wasnt anyway to go through your teenage years i mean they are hard enough with out being the "sick girl". My PCP was my saving grace. He ALWAYS believed me and never quit on me. He would write, we will say, "wordy" letters to doctors who put me down. He is also the one who ALWAYS suspected Lymes. The first time I was tested was when this first happened but it came back negative, but really positive and they just didnt know enough about it. He then tested me again almost 2 years ago with a cd57 test and it came back 98% active for lymes. Since then I have done the doxy, ketek, Rocephin through a picc line, vitamin C, 3 Lak, pro biotics.......but I have also developed small seizures. I have had one Grandmaul the rest are starring off with seizing. My doc thinks it is in my CNS, brain, muscles and everywhere. I also get heart palps, we arent sure if this means its in my heart too. These symps among ALL the others... blah. A girl in the community here lost her life to lymes. We still are not sure how, she was taking heprin and had some sort of clot. but this freaked me out. I am with a wonderful guy and have been for 4 years. He is very supportive and has seen me at my worst. But i always worry about my future. Will I be able to keep a job, can i have kids, will this just get worse? Fleeting thoughts of ending it all have happened...but I remember my faith, and I wont let this disease win like that. Im "better" from when I was 12....but still have BAD days.. Im learning thanks to this site that im not alone in this and even though I am prob always going to have bad days ill get though them. Thanks for listening ... sorry this is so long... Try and have a good day!  Kendra From Kansas |
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