posted
I was diagnosed with Lyme disease 16 years ago when I was only 7. Due to this, I don't know any of my previous doctors' names, and my parents must have just forgotten at some point.
Every couple of years after I moved out of my parents' house, I would stop by a general doctor to ask about my continuing joint pain, fatigue, eye deterioration, and sleeping disorders wondering if my Lymes was still present. I have always been told that I don't have Lymes anymore until today.
I met my very first Lymes peer today. He told me that Lymes is lifelong and that he will be treated for the rest of his life, as he has been for the past 10 years. He said there was an LLMD in Peoria, IL, but before I could ask his name, the man had to leave.
Please, help me find this doctor so maybe, I can start feeling ok again? If this is true, and Lymes IS for life, then I haven't been receiving treatment for 16 years...
I haven't gained but 30 pounds since I was 7 years old and I eat constantly. My eyes are a medical phenomenon to every new optometrist I see (there's A LOT of scarring) and are getting worse. I'm always pale even if I spend the whole summer in the sun. I'm anemic, hypoglycemic, and the Red Cross has said they wouldn't let me donate my blood even if I did meet the weight limit because it would make others sick. This, IN SPITE OF THE FACT, that apparently, there's nothing wrong with me.
I'm only 23 years old, and I having trouble sitting up to get out of bed in the morning because my back hurts and so do my knees especially. My jaw locks up in the middle of eating for no apparent reason except that it hurts too much to keep using it to chew. I'm constantly staring off into space either because my eyes are tired and hurt, or because I feel like I'm walking around in a haze. I can literally sleep for a full day at times because I always feel exhausted even though I get my 7-9 hours a night. And when I do sleep, the sleeping disorder kicks in which my poor husband has dealth with for 4 years now. I'd explain that further, but I don't really talk about. It upsets me, and sometimes, scares others so I avoid the issue.
You asked in your new members post for me to explain my situation when I sought after a doctor. Here it is. You judge what's happened to me, and if there is hope, please help me find it...
Posts: 8 | From Illinois | Registered: Jun 2011
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I'm not sure what happened in an earlier post, but you deserve to get good care and feel better. You probably are still dealing with Lyme and coinfections.
I will PM you with docs.
I trust that others will try to help you also.
I'm so sorry for your pain and misdiagnosis!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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