This has been a very interesting thread. Thanks for sharing your story, Jules...and I'm really glad you're on the mend, at least from the Lymes.

It is so difficult, with all of these weird diseases that dress like one another, to get an answer, isn't it? It frustrates me, as I'm sure it does so many of you.
Sure wish the medical community would get the whole thing straight and get the knowledge they need to test us for these things, instead of shooing us off with a dx of depression and throwing rx of ADs at us as they usher us out the door. What if it's Lymes, MS, or something just as weird?
We, as patients, just want to make sure that the docs have it right and that they're not giving up on us...is that so wrong?:confused:

Again, Jules, thanks for letting us know how you're doing...take care of yourself!!:hug:

I should've clarified my question better. I know that Lyme sx remit as in the aforementioned waxing/waning but what I meant by complete remission was wondering if neurological sx can actually disappear for years at a time. That's one of the reasons I never did my kit -- I have little reminders here and there but I guess I felt that if it was Lyme I'd have more going on without so much time in-between. (Though granted, I haven't been dxed for all that long...) That said, I went to throw my kit out the other day and couldn't bring myself to do it! It's been sitting in my kitchen for over a year and of course now this discussion means I definitely won't be throwing it out anytime soon, LOL.

Since the time I've been dxed I've seen several people who suspected MS go on to get an Lyme dx and I think 2 people whose MS dx was reversed. As mysterious as MS is, I think Lyme might have it beat! I know the problem with testing is also that there can be false postives as well as negatives.

Natalie, that's quite a story! :eek:

Jules, seriously, I know the fever stunk but it seems like it's a really good thing you got it! I know that not everyone gets a fever or rash so if anything neurological appeared you might have just chalked it up to MS doing it's thang!

It's a good thing you were proactive Natalie. It could have been disastrous otherwise. It was for the daughter of a friend of ours. She went untreated for almost 2 years before the docs finally tested her for Lyme. She was hospitalized for 4 months once they discovered what it was. And we live in perfect Lyme territory! They never once suspected it! Go figure...

She's doing very well now.

4 months in the hospital?? Scary. Lyme can be nasty if it goes untreated for awhile. I'm so glad your friend's daughter is doing well now.

Not a lot of people get lyme in TX. But my aunt is an E.R. nurse in Maine -- she spoke to the infectious disease doctor at her hospital and he thought the IgeneX lab was valid even thought my infectious disease doc. here thought it was a joke. But I found a lyme literate doctor, drove 3 hours to somewhat rural TX, and aggressively pushed for IV antibiotics. I had to stay overnight in a hotel for 3 days to insure everything was okay at the start of the treatment. But I really wanted to wipe it out of my body before I started any MS drugs. And I figure if I didn't really have lyme then nothing really lost in the long run. Fortunately, my insurance paid for it all as it is costly.

There is a Dr. Brian Fallon at Columbia Univ. who recently started a lyme clinic. He believes there is such a thing as chronic lyme (again people debate this). He is a psychiatrist and does a lot with neurological lyme stuff. He also feels that longterm antibiotics, particularly IV antibiotics, can be helpful for those people with stubborn infections or neurological lyme problems. One of the nurses that came to my house to check out the PICC line said she used to work in Virginia and she had seen some terrible cases get miraculously better (people who couldn't walk, think, or talk) after months and months of IV antibiotics.

Anyhow, maybe if I had not gotten the rash and fever while in Washington DC I wouldn't have caught the MS as early as I did...because I had never had any MS symptoms that I can think of -- and I've racked my brains to go back in time and try to see what I could recall and there is nothing. Sometimes I wonder if the mono or the lyme triggered MS. Guess I will never know.

But like you Jules, I thought, what rotten luck! MS and lyme.