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[QUOTE=Chantel2003;2948383]Hey Sarah,

As you can tell, I still don't know enough about this disease. Thank you for clarrifying everything for me. I really like Dr. forester and I know in my heart that he will do everything he can for me.

No, both of my tests came back negative. I had some positive bands though on my IGM. 39 was IND and 41 was +. That's why he put me on the abx.

I was confused about the CD57 test. I took in so much information that day. Thanks for explaining that to me. I remember now.

Chantel[/QUOTE]

Chantel, from what I have read and what Ticker posted the 41 band is specific for LD, I am also not pos. by CDC or Igenex but I have 41kDa and several other pos. on both IGM & IGG, same with my son. I have been told by 2 different LLMD's that I have LD and my neur. read the results and agreed also. So obviously that's why the LLMD's know we have LD even without the CDC or Igenex agreeing. Plus those are just guidelines they go by for reporting purposes, they even state on the report that double starred bands are significant at IND and +. I know what you mean about being confused. I have spent hour after hour every day for 7 months researching and reading everything and every book I could get my hands on and talking to people about LD. when my son and I got diag. we got his results on a Thurs. here in Texas and Mon. we were in CT seeing Dr. Jones, he had a cancelation or it would have been 3 months to get my son in. They told me about Dr. Phillips and he was able to see me Tues. I didn't even have my Igenex report back yet, but he started me on ABX's because of history and an Equivicol Elisa, and my CD57 came back before my Igenex report and it was 26. We had never been to CT before, and every test we had to take was in a different town. I drove all over that state, at least it's not as big as Texas, LOL But It was very overwhelming. :dizzy: And we only get to see our LLMD's every 3 months. So I made sure that I was going to learn everything I could about LD. Still I hear contradictory things all the time, because this disease is so different from person to person. This board has been alot of help to, we don't have a support group here, but I just finally found another adult here that has LD, the rest are children that go to my son's school. So I feel pretty lonely most of the time. Unless you have LD you don't understand how bad we actually feel. Hang in there, and learn as much as you can. I even go down to the bookstore, get a drink and read their books. Have you found a support group? You know that the board is here for you to help, There also is a monthly newspaper called the Public Health Alert you can order for $30.00 a year You just send the payment to: Public Health Alert 821 Sansome Dr. Arlington, TX 76018. Bryan Rosner sent me the April & May copies of it and it is really a great newspaper, it has personal stories and info about ILADS and IDSA and everything that is going on with LD. Sincerely, Sarah:)





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