Glad you had your appt Rikky1. Very interesting to read what you are doing and compare it to what DS has done. What it shows me is that they continue to mix it up in different combos for different patients. Also DS may have a bit different protocol since he's a teen and not considered an adult.
They really do listen to what your current issues are and adjust for that - continuous improvement. Most patients do seem to need to re-hit various infections for a few months. Babesia re-hits seem pretty common. Breathing and fatigue are the two symptoms left for DS but fatigue has pretty much gone away and hits of albuterol for breathing have been much less this summer - yeah!!
DS has been treating for 1.5 years and is greatly improved, particularly in the summer. He is now starting a 2 weeks on, 2 weeks off cycle (had to stop that for awhile because of reinfection with myco and re-treatment of babesia). The goal is maintenance before long but we'll have to see how he does this fall when school re-starts.
DS has always had 1 week off except for the last cycle as we were trying to re-hit babesia but that ended up being for only 1 cycle of no breaks. The way it was explained was 1) it gives the body a break and 2) allows the immune system to eventually start taking over since it has been suppressed by the Lyme. I will say that the first 6 months were awful and also that DS was always asking during the 1 week break when he was going back on by the end of that week because he felt awful - even though he was so sick while on them too. It's been at least 9-12 months since he's asked that. For quite some time he's felt the same off and on meds - pretty good - that's how we measure progress and now we are trying to measure it with more weeks off.
JC has worked well so far for DS. I'm now hoping to add in some herbs as we hopefully are hitting the final stretch. As far as seeing Dr. J - we were told Dr. J doesn't meet pediatric patients so we see a NP and it's been fine - they consult with Dr. J and among themselves and it hasn't been a problem for us but it may be for others.
Parent of teen DS w/ CDC+ Lyme test Nov 2015, late stage Lyme + mycoplasma, bartonella, babesia. Currently treating with antibiotics/anti-malerials, multivitamin, magnesium, CBD oil.
Website I started: ParentsofLymeKids.com
aka Lyme Disease 101 for Parents
Post Edited (yancync) : 8/13/2017 3:58:06 PM (GMT-6)