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Lyme Disease Message Board


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Hi there! Sorry to hear you're feeling so badly. You'll find a lot of poeple here you will identify with and vice versa. There's wonderful information.

From what I can gather, a huge group of people with Lyme test negative. I was recently diagnosed with a negative ELISA and Wester Blot according to CDC criteria. Just curious, have you seen a Lyme doctor yet or are you still going through the endless circus of physicians who will only view Lyme through the lens of the CDC's very narrow guidelines?

Just curious how you know you need an IV? Have you already gone the oral abx route with no luck?

If you haven't found a Lyme doctor I would strongly suggest it. An LLMD won't look at your Western Blot as black and white positive or negative. He or she will look for Lyme specific bands. They'll be much more open minded and have a lot more knowledge about how Lyme affects you.

I would definitely caution against demanding anything from your doctors, especially since yours seem to so be unwilling to work with you. It's a tough, horrible, demeaning thing to have an illness and be dismissed. But I have found that to be one of the hardest parts of this years long journey to get diagnosed. Even the doctors who believe in chronic Lyme and want to help sometimes have their hands tied depending on where they are affiliated, etc. What I've found is that we (the vast population of Lyme sufferers) get dismissed by so many doctors or told "it's all in our heads" so often that we develop a mistrust of doctors, but if you can find an LLMD who is willing to work with you then you can go back to being the patient and letting them do the work--the way it's supposed to be--we're paying them, after all, lol! Of course we all have to be our own best advocates, but the way I see it my LLMD went to school for a long, long time. He works for a nationally respected medical center and continually is learning about Lyme in a labratory setting and by continuing ed, etc, so his knowledge trumps mine, no matter how much I read on line, in journals, here at Lyme conferences or at my Lyme support group. I'm so relieved to just finally relax a bit (but not completely, I still have work to do) and feel like my doctor is working both FOR me and WITH me, rather than against me!

Good luck to you and I hope you find treatment soon!





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