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Lyme Disease Message Board


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Dear Ticker,

I finally have some news for you. My last e-mail let you know that I had an
appointment with an infectious disease doctor and he told his nurse he could help me after reviewing all the stuff I sent him about my case. When I got
there the first thing he said was he didn't believe that I had Lyme. Well you could have knocked me over with a feather and his nurse was totally embarassed too. He did some base line type blood work and said he really didn't think the insurance would pay because only the one band came back positive but he would see. I got a call 2 weeks later that they had approved
the meds. Was I surprised! I really thought he would sabotage the paperwork to the insurance because of his feelings. Anyway this past Wednesday I had the pic-line put in and then went to his office for my first dose because they have an infusion room and an on staff pharmacist there.
They did the first dose and showed me how to do it at home. I had to go
back the next day so they could change out the bandage and give me a weeks worth of meds. I am to go back every Wednesday for blood work
and to get the next weeks meds. He put in for at least 6 weeks just to see
if it helps and then we go from there. I told his nurse that I didn't want him to do this just because I wanted it but she said she really thinks he has
feelings it may be Lyme because he would not be doing this if he was sure it wasn't Lyme. I sure hope I start to see some improvement before the six
weeks is up. When I got up Friday (after 2 days of meds) I can't say that I felt better but something felt different in my legs. I can't really put a finger on it but they didn't seem as tight or something like that. I got real excited but later in the day and today it was the same old thing I have been experiencing for almost 4 years. I know in my heart it wouldn't work that quickly but I got real excited and now I'm just saying to myself this will take time. The nurse and pharmacist say at least 2 - 3 weeks before I see anything. Does this sound right to you? So far no real problems with the meds other than diarrhea but that I can tolerate. I am taking the acidophilus
to keep the good bacteria functioning. One thing I have noticed is that I get real limp (no energy) after a dose. Is this normal? I also told them that I feel like my glands are swollen but it is real funny that my throat hurts more in the front than the sides a few hours after the meds. This feeling does go away after about 6 hours. They thought I might have drainage or am getting a cold. They said this was not the throat closing problem because I would definitely know if that was happening to me. By the way the meds I'm taking is Rocephin 2g. The nurse that changed my dressing on the second day sounded like that was a lot. I wonder why he would give me a high dose if he didn't think it was Lyme. I will say that he said the Doxy would not get it if I had been sick for so long and that it was neurological now; which it definitely is at this point. I wish
I knew when I could expect anything in the way of permanent change or even just change I could identify so
that I didn't feel as though I am doing this for nothing. Actually I don't feel this is for nothing but it is a big commitment for a test that came back negative. I guess I just have to hope for the best and if it doesn't do the trick at least I've ruled out Lyme. I love his nurse and pharmacist because they insist I'm going to be there "miracle child" (at the age of 56!) and make the doctor not always have a black or white attitude. I hope they are right. If anybody out there can give me some feedback about the amount of time it took them to get better (even just a little) and what to look for in the process please let me know. Say a prayer for me that it is Lyme and I'm finally on the right track! Even with insurance it will be an expensive thing to do but well worth the money if it gets me better. I really don't want to have negative thoughts because that doesn't help and I do know you can have Lyme without a positive test but I'm still doing a lot of praying! I even enlisted the doctor and his staff who put the pic-line in to pray for Lyme. He couldn't believe they were trying to tell me that I had MS at the age of 56, he said it was highly unlikely to occur that late in life. Isn't it terrible that you pray for a disease! But at least it would finally put me on the road to recovery. I apologize for my rambling but after almost 4 years I can't help it. Thanks again for your help and prayers and I'll keep you posted with my "progress". See I do have a positive outlook!!!
Love,
BETTERDAYSFORME





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