Thanks for updating us. Very interesting what you said about not having normal responses to antibiotics in light of your Neuroquant.
What responses did you have to antibiotics? Which abx?
Did you ever go through the Shoemaker protocol or take Cholestyramine?
I never got improvement with antibiotics. Sometimes I took combos that most on here feel are pretty potent and didn't feel better or even worse (doxy/rifampin/bactrim/plaquenil). However, I would feel a bit worse with most other combinations (mostly insomnia, flair in urinary symptoms, some achiness in hands) but it would not subside as a normal herx would. I always wondered if it was candida flaring with antibiotics. The combinations I can remember are:
biaxin/plaq/flagyl (did have some kidney pain)
parasite meds: biltricide
alinia (i think with the above combo)
No response to full dose of byron white A-L or A-Bart. Did Green Dragon Core herbs (JK, CC, Andrographis, Sasparilla) for over 2 years. I thought LDI helped decrease my internal buzzing but when I tried it just recently it did nothing. Currently trying Zhang herbs - Coptis, Circulation, HH along with Biocidin and doing Diflucan.
I have tried welchol with no success. Never tried CSM. Modified citrus pectin helps me sleep so I stick with it. This doc I see now is doing a modified Shoemaker. I am finishing up desmopressin right now for low ADH. I'm taking resolvins to correct MMP-9. He has not mentioned CSM. I think next we will retest MARCoNs and if that comes back clear give VIP a try. I am going to request a script
for CSM next month when I see him. I'd like to see if it helps.You're seeing one of the most experienced LLMD's right?
What does he say?
Have you and your LLMD thought about
trying Mepron? If it is Babesia holding you back, the malarone might not have been enough of the atovaquone.
(Not questioning your Doc...just trying to trouble-shoot...)
I thought you had improved quite a bit, though with treatment?