Just thought I'd drop in and give another quick update on DS since Girlie asked on another thread. I'm in my busy season and not on as frequently.
DS is seen by staff at JC in DC. His last appt was a few weeks ago and for the first time, his 3 biggest concerns were empty - meaning he had no symptoms to report. He is even off his inhaler although he is still testing low positive for mycoplasma and will continue to test monthly for a while.
Because he is in lacrosse season and college recruiting season he asked if he could stay on meds a few more cycles before dropping to maintenance (1 wk on/1 off) after telling me minutes before we went in that he was DONE - no more meds. Between that comment of frustration that you all can relate to and the walk into the clinic, he decided he didn't want to change anything since things are going well. I on the other hand am counting the days until he's backing off the meds. It is probably good he continues as is to really clear out that mycoplasma.
He has always felt "better" every spring/summer but this is by far the best he's been in over 3.5 years since he was bit (2.5 years in treatment at JC).
For those who are at JC, I hope you find it works for you. Everyone is different but here's an overview of how it went for DS. It was a long slog but we stuck with it and he rarely missed a dose. They did have to back track and re-hit some of the infections a few times but most of the time, there was progress, slow and steady if we looked at his symptom lists. At the beginning, new symptoms popped up, some old ones would go away and then come back for awhile (this was when he went back on babesia tx for example). It was over a year maybe a year and a half before his immune system came back online and he caught a cold. Patience has been the name of the game for DS and anyone with late stage/chronic Lyme.
I promise to post a few more updates over the next year or two because of course we all wonder if/how long remission can/will last with this type of treatment. I know I search for threads on that topic now that he's almost there.
Parent of teen DS w/ CDC+ Lyme test Nov 2015, late stage Lyme + mycoplasma (stubborn/lingering), bartonella, babesia. Currently treating with pulsed antibiotics, moving toward maintenance and headed into remission - no sick days this school year yet
Website I started: ParentsofLymeKids.com
aka Lyme Disease 101 for Parents