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    Posted June 14, 2014 by
    Green Bay, Wisconsin
    This iReport is part of an assignment:
    Living with a chronic illness

    My Chronic Lyme Story

    In 2007 I was at the top of my physical fitness; 48 yrs old and very active. That Sept I was in a car accident and 10 days later we had a carbon monoxide poisoning in the house. I was never the same after that. Things started to go wrong like weird pains, ear and sinus issues and so tired. Eventually I had to use a wheelchair to go any distance like shopping in a grocery store or even making it to my mailbox. My mind was getting foggy and I would have episodes of spasms that caused my ribs to dislocate. Years spent having to stay totally still to keep the spasms from getting too bad. But every blue moon I would be totally fine with no problems at all. First just a day or two, then four days, one time it was 17 days. No one could figure it out. A friend brought the Under Our Skin video over. I recognized myself, especially the good and bad day part. I tested CDC positive and started looking for someone to treat me. By this time I could barely get up, couldn't follow a simple TV show or read anything. Swallowing was hard and exhaling was worse. I started to wonder if this had happened to my kids and niece. All but one tested positive and he was IND. I found Dr. Cameron in Mt. Kisco Nov. 2009. I was flown out and someone finally understood what was wrong. Maybe it was because Dr. Cameron saved me and gave me the hope I would make it that to this day I believe in his protocol. I knew he was the lead author on the National Guidelines Clearinghouse ILADS protocol Maybe because I had first been to a "storefront" Lyme doctor who let me go due to complications and left me worse than before I started treatment if that was even possible to believe back then. I tried orals for a few months but things kept getting worse not better. I couldn't see and would lose my hearing, or worse I was talking to the walls. They put in the IV. 9 months later I was able to walk through the airport without the wheelchair. I knew there was hope. Clindamycin was added to the IV and my brain started to clear up a bit. Now all these years later I still see improvement. I will not stop until I am symptom free for at least two months while on the antibiotics as per ILADS published protocol. I knew it would be 3 to 5 to 7 years...I am hoping for 5 years now. Bart has been the hardest thing to get rid of. It has been over a year now and still feeling it in there. I have not jumped on any sidetracks while going through this all. The days were really, really bad back in the worse... suicidal thoughts would just pop into my head and pain was so intense that even nerve blocks wouldn't stop the spasm. Numbness, legs buckling for no reason, face and hands contorting...you name it it happened after I started the medications. I got way worse during treatment and I was barely alive before I began. I knew my kids had this and I had to believe I could get better...I had to believe Dr. Cameron. So far he has not steered me wrong. I look at my niece Angeli and see her back on her skis and I know I can do it too. I know that many say they can't handle the antibiotics but those alone are what got me back to where I am today. I do eat sugar and whites but only in very small amounts. Food never seemed to make a difference in my case. I do not drink and have 1 coffee a day. I rest when my body says to and I do not fight the fact that I have something serious and I need to take care of myself. Every med change brought on worse symptoms. I would ride it out until it eased up and then give it a few months and switch again. Eventually the good days came closer together and then they stayed for longer periods of times. I have not had a spasm in almost a year. I have to address parasites but I will get it done. I am heading to Sochi soon. I walk like my eighty year old mother but I can do it now when I never thought I would ever walk again.
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