My name is Kath and I have been diagnosed with Lyme for 10 months... I never recall being bitten and my symptoms were pain in my knees. I was tested 3 times for Lyme but all came back negative. My doctor took xrays and said I had arthritis.
He gave me an excersise program and put me on pain meds. My knees got worse; they became very swollen and started to get disfigured. My memory got worse and I started falling down whenever I reached up for something. Finally, he gave me another test which came back positive for Lyme...I was then placed on oral antibiotics for a month. No improvement, so I went into the hospital for IV antibiotics.
I had to begin my IV treatments as an inpatient because I am on social security disability due to bipolar disorder, and Medicare doesn't pay for out patient treatment for IV for Lyme -- makes sense doesnt it?? Ha ha .... Anyway, after 22 days of PICC line IV I am worse now..I spend a lot of time resting. I am on a very strong dose of pain med's called oxycontin which costs about 8oo dollars a month.
My doctor (who is not a Lyme specialist) is asking the manufacturer to pay for it as I am "too poor to pay attention"..LOL ...I have been looking for a chat room and yesterday I found you guys.I was so blessed to see a group of wonderful folks who had the same thing that I did and were willing to share their stories and encourage one another.
One thing that upset me is that some folks have been fighting this dreaded disease for many years and had little or no improvement.. I found so much information that I am reading everything I can on Lyme so I can share it with others. One day I would like to start a support group in my home as there are none in Ulster County, NY.
Thanks so much for allowing me to share my story. I am a single mom of a 21 yr old daughter who lives with her children, and I have 2 boys at home, Matt age 8, and Davey age 5 ...I have a wonderful church who prays for me often and I get around a little bit. My pride is the only thing that keeps me from asking for help with chores. I used to be a "clean fanatic" but now I don't get to do too much because putting weight on my legs causes me tremendous pain..
My doctor says he is concerned that I may get blood clots in my legs so he calls me often, even from his home. I haven't found another doctor in the area that specializes in Lyme that I feel I can trust. ..I will continue working with my doctor who is doing everything he can, including talking to other physicians and researching Lyme. He usually refers other Lyme patients to specialists but he said he will work with me as he has been my family physician for 10 yrs, and I trust him.
He is a brilliant man which also helps... He usually refers Lyme patients to other doctors but I choose to stay with him for now.. I am praying that this will go away sometime, but at least I have my family to be thankful for. I do take a lot of vitamin supplements as suggested in my nutritional book, so that may be helping me as well.
May God bless you all. By the way, another doctor who is an infectious disease specialist that I went to several times, suggested total knee replacement, but I said no.. I am believing in that day I will get better or another treatment will come out..Thank you everyone for your support and may God Bless you all.
Kath
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