I think someone check in last week. Usually when people are feeling better or are better they don't need this site.
Heather
I'm still taking abx, but need to think about a good ending protocal. I like the idea of taking abx periodically down the road and checking for reaction or herx. Will have to talk to the llmd about it in a couple of months.
It has taken 3 years to get where I am. Discovering celiac, what I believe was the cause of my compromised immune system, and greatly reducing wheat in my diet has gone hand in hand with long term abx,heat, diet and exercise changes.
It takes lots of time and sticking to the "plan".
Mel
Don't give up the abx. You are feeling better? everyone is different. Is this first diagnose and treatment?
I have been abx for 9 months. Initial diagnose in 96. Undertreated with 30days abx. No co-infection test. Symptoms coming back in 2000.
I am feeling much better and about 85% closer to the real me. If this is recent diagnose, go for the gold baby.
You're in great shape already.
Lisa
i was first dx'ed in 1998, and i was a sophomore in high school. i missed school for two years, and i couldn't have a tutor or anything. for most of that time i could only speak in partial sentences like "could I have a..." "where..." and for about 5 months my speech was reduced to one syllable utterances and a lot of screaming. i couldn't read, for a few months my parents had to feed me, and i ended up not eating enough during that time. there was a period of wheelchair use, and a time where it took about 15 minutes to get to the bathroom...there were lots of iv's. lots of money my parents never got back. 4 treatments total, the one that finally worked took 7 months. i also took a lot of psychiatric meds, some of which did more harm than good, but we were willing to trade that for the chance that one would work, and we found some that did the job, after a while.
i eventually (after 2 years) got back into high school - I felt a lot older, and i was really insecure, and the worst thing might have been the fear of a relapse. i started with a partial schedule, as a sophomore, and it worked somehow. i started off in remedial english, but i felt like i was ready for the regular level classes, and my parents and sister were really supportive. of course i owe most of what i have to them.
that year was really rocky, but it ended, and so did high school. now i'm 22, life is nowhere near perfect, i'm still really high strung (often, not all the time.) but i'm in college now, at a hard school, doing two majors, english lit and theatre (i guess i have a cool resume having been unable to read, then in remedial english, then regular, then honors, now it's my major, they tell me to write a book about it or something...whatever. i still have some minor health problems, i don't know if post-lyme syndrome is real or whatever, but it did wear me out. like wrists and feet that bother me sometimes. i also have to watch what i eat, my blood sugar is unpredictable. i have a lot of tense moods, but hell...i guess i'm doing ok, even if i don't always feel ok. i'm just trying to be honest with myself. i don't really know what to tell you, except to talk about myself. i guess if it helps, i'll keep doing it. as long as i can keep it real.
i don't know what else to say except good luck with this.
dan
[This message has been edited by TrueCornsilk (edited 30 July 2005).]
[This message has been edited by TrueCornsilk (edited 30 July 2005).]
I know that there is a "success stories" post around here somewhere, but on my end, the search function doesn't work and I can't pull it up.
I am a success story. I AM NOT cured, but I am a success.
I don't know how long I had lyme. I could never guesstimate that no my best brain days. All I know is that in September of 2002, I went down HARD with all neurological symptoms ( severe migraines, severe 24.7 vertigo) and an associated array of 74 other symptoms. Yes, 74.
it took 9 months to be diagnosed. I did 18 months of antibiotics and pulled myself off due developing extreme sensitivities to not just antibiotics, but food. I had developed a horrible case of leaky gut syndrome and yeast. Six months after I stopped antibiotics, BUT YET DUE TO THEM, I was and continue to be pretty much back to normal. That was last August that I went off abx.
I now take Bicillin LA, one injection in my behind once per week. I have to go back to oral antibiotics next month to nail a coinfection ( bartonella) that I didn't fully get rid of.
My daughter was more than likely born with her lyme. She did 3 months of zithromax ( at the age of 6- so it was in there a while) and recovered wonderfully for a year and a half.
Unfortunately, she recently relasped and is back on medication.