I've been posting on and off for a while about my various symptoms and being seen at UCSF and having 20 lesions that are very unusual and not classic for MS. Also, my other tests (loads of them) were all negative for MS.
I got a Lyme Disease test from IGenex and if I'm ready it correctly, it is showing postive for Western Blot. I believe that I have lyme disease and am in the late stages of it. They did a lyme test at UCSF (during my lumbar) but it came back negative. However, I understand that many times Lyme does not show in the CSF. So, in my quest for answers, I'm moving over the Lyme forum and will start looking for a Lyme Doctor this morning.
Anyhow, I will check back in, but wanted to share my latest!
I just made an appt with a Lyme Doctor in San Francisco. First available isn't until April 6th! However, people come from all over the world to see this doctor so my chances of a cancellation and getting in earlier are pretty good they said.
I don't know what it will mean for me if I'm in the late stages. I pray that I can still have some sort of recovery from this. I worry though that I might have permanent nerve damage but I guess I will learn more about this when I see the doctor.
I will keep checking back in and keep you updated. I wonder how many of us on this forum that are in Limbo might actually be suffering from Lyme rather than MS????
Oh, I forgot to mention, I went to IGenix Lab in Palo Alto, CA for a blood test. They are a lab that specializes in Lyme. My results were postive for Western Blot from them. Ironically, I had the test in November, but the test went to my fam doc (you have to get a written order from a doctor to get the test and they are quite expensive).
My doc wasn't totally clear on how to read the test and thought it was negative so I let it go. Then, I got a copy of the test and after stuyding it, I realized that I had a positive test.
Hey thanks for taking the time to let us know what you are up to and I wish you all the best in your journey ahead. I am happy for you if you do not have MS and hope that you can get the right treatment and help for Lyme Disease if this is confirmed.
Wow! You had to read the test yourself to figure it out! That's crazy! You sound relieved though - although I'm sure you're not happy to think you have lymes!
So whatever happens with this - I hope you have a good outcome and find some good people on the lyme forum. But remember - we still may share a lot and be able to support - wierd neuro diseases are wierd neuro diseases!
Let us know how you do!
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