Just thought I'd drop in and post a few items from DS's appointment with C - first time with her. She was extremely thorough in her explanations. We actually met Dr. J for a few minutes when he dropped in for the first time as he doesn't generally work with pediatrics. We're so grateful for this dr and his clinic!
DS has been treated there for almost 3 years after at least 1 year untreated/undiagnosed. He has been feeling really good since July 2017 and been in a sort of maintenance mode since last Nov. However he keeps getting myco, beats it back and then is reinfected especially in Sept when school starts.
Here are some takeaways (remember they're particular to his case, not everyone, but may be of interest to those treated there but not yet at remission to know what's at the "near" end ;)
Continual reinfection with myco even though he's with no symptoms means his immune system, while much stronger, is still not quite there. So we drop back to fewer weeks off for a few cycles and then bump up again to many more weeks off. Periodic blood work continues.
When I asked about
future steps, they said - once a patient, always a patient (not sure if that's really who completes treatment and is in remission, always a patient). We can always call back if things regress too much after he's completely off abx in a few months and they'll reassess. Our last few appts are 6 months apart btw.
He is to ramp up detox whenever symptoms creep back in - and she said they will if he doesn't get good rest, good food and listen to his body. Detox she mentioned is sweating, healthy diet of protein, veggies and fruit, probiotics, good, regular rest. He already exercises/sweats a lot. If a few creep up and they don't resolve with detox, then he should call.
Babesia is the infection they most frequently see regression with after a patient is off abx. It causes the most trouble in their experience. Also stated that all infections and many viruses (EBV, herpes etc) are still in there, it's just that the immune system is repaired enough to keep them at bay as long as one takes care to not over do it and pull back right away.
Gallbladders - they are noticing/hearing about
many younger patients needing to have the gallbladder removed due to babesia. She pointed out its
location and asked about
discomfort there-he hasn't had issues thankfully.
I think that's it.
Parent of teen DS w/ CDC+ Lyme test Nov 2015, late stage Lyme + mycoplasma (stubborn/lingering), bartonella, babesia. Ongoing treatment with pulsed antibiotics, moving toward maintenance and headed into remission.
Website I started: ParentsofLymeKids.com
aka Lyme Disease 101 for Parents