Posted 3/10/2018 12:36 PM (GMT -7)
Hi again! Sorry for all the posts lately...don't really know who else to turn too! I'm hoping to get some input again on whats going on with me. First I'll real quick go over my Lyme history! Symptoms starting in February of 2015, all sorts of weird things that kept coming and going (as we all know the roller coaster of Lyme!) Finally got a diagnosis after a year and a half of seeing every doctor around here and even Stanford!! Started treatment a year and a half ago...here's what I've taken:
Doxy for a long time
Azithromycin also very long
Lots of herbal supplements (too many to list)
Got tested for Babs and Bart a little over a year ago and Babs was positive.
Tried A-Bab, couldn't work myself up, had so many symptoms (chills, insomnia, etc) so we switched to Bab-1
Malarone (started with a quarter tab and VERY slowly worked up to 2 in am and 1 pm) it's been about 9 months since I started, but again the first 4-5 months I was still very slowly working up and every time I had to stop, I would have to work up again, although not quite as slowly.
Crypto plus- a couple months, never got up to full dose
Artemisinin- also never got far at all!
Augmentin- for a few months
BLT- started about a month ago and haven't worked up to even half the dose.
I think that's it.
Detox- activated charcoal, chlorella, neuro anti tox, pinella/burbur, alka seltzer gold, epsom salt baths, dry brushing, lemon water...to name a few!!
Seems like as soon as I start getting a little momentum I fall apart and then when i'm somewhat ok I'm scared to death to add anything new! Anyway, now getting to the present! This week has been hell! Ended up going to ER last night since on top of the symptoms I've had all week (headache, neck pain, back pain, blurry vision, dizziness, shakiness, chills, really horrible anxiety and panic, pins and needles, weakness in legs like sometimes they feel like they could give out and faintness) yesterday I started having numbness and tingling all down on right side, including my face. They ruled out that I wasn't having a stroke (phew), I never told ER doctor my diagnosis (since we all know what he would probably say) but he told me if it continues I should get checked for MS, which I was 2 and a half years ago at Stanford. I did have an MRI too that didn't show MS but wasn't 'normal' either. The weirdest thing with my symptoms this week is they go through a cycle switching every 20 minutes or so, so they don't all happen at once (which I'm very grateful for) and every now and then I'll be symptom free for 10-20 min. My llmd thinks Bartonella might be the problem, I do have some disc bulges in my neck and I had my hair washed at the salon the day before all this happened, so I'm not sure if a nerve was pinched, but even if it was I wouldn't think all the other symptoms would be popping up! So sorry I never meant to make this so long! So anyone who actually took the time to read all this I appreciate! You've already been so much help with my other posts!
My llmd wants me to take klonopin (anti anxiety med) on top of all my herbals to see if we can calm my nervous system down and then he wants to treat Bartonella with Bactrim, but I think I'll do Rifampin, like you mentioned Girlie (even though it really scares me!) So, my question after all of that is do you think the treatment I've been doing for a year and a half has done anything? I can't help questioning my diagnosis especially since I'm not getting better and this flare/herx has been the worst I can remember! We tested again for Babs and Bart and Babs was active and no BArt.