Neurological nightmare

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Date Joined May 2017
Total Posts : 398
   Posted 3/10/2018 2:36 PM (GMT -6)   
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'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 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.

Forum Moderator

Date Joined May 2014
Total Posts : 33798
   Posted 3/10/2018 5:09 PM (GMT -6)   
tonya - i'm sorry you are struggling so much.

I have had some pretty rough times, too. Sometimes fear sets in...when I start thinking that maybe there's something else contributing to these symptoms...and I will never get better.
But, then I have a good day where I'm almost symptom free..and I feel good. That reassures me that if I can have a good day like that....then I can have all days like that. And if there truly was something sinister - structurally that I wouldn't have the good days.

So, were you taking Bab-1 plus Malarone, Crytolepis, Artemisinin, Augmentin and BLT - all daily.
Or did you try each of them separately?

...which ones are you currently on?

I wouldn't worry about Rifampin...i haven't had any issues with it...What antibiotic will you be taking with it?
It's much easier to take than the Mepron.
I find Bactrim harder to take. (And I can't get the Stevens Johnson syndrome risk out of my head...I've seen the pictures....and anytime I get a spot or a rash....I worry that's what I have) This is my second time trying ramps up my nerve pain...but hoping it's killing the bugs in that area.

I wonder if your LLMD would be on board with you pulsing the antibiotics. I find it much easier to tolerate...even with taking 2 antibiotics (plus high dose Artemisinin) along with the Mepron being double dose than what most LLMD's prescribe.

Hope you feel some relief, soon, tonya! sending you a big (gentle) hug.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

LymeSick 🌟
Regular Member

Date Joined Aug 2017
Total Posts : 234
   Posted 3/10/2018 6:50 PM (GMT -6)   
If you're going to take Klonopin you should really consider getting advice from a psychiatrist.

Klonopin is a CYP3A4 Substrate, Rifampin is a CYP3A4 inducer.

In fact, Rifampin lowers the effect of a lot of antidepressants that way, I learned the hard way.

Regular Member

Date Joined May 2017
Total Posts : 398
   Posted 3/10/2018 7:25 PM (GMT -6)   
LymeSick- Thanks for responding! I so appreciate any input!He doesn't want me taking klonopin and Rifampin together, at least that's what I'm assuming. In fact he wanted me to do Rifampin and I was too scared so he said let's do Bactrim, but after getting Girlie's input I think I'll ask him about trying it after all. He has me off everything until we can try to get my nervous system to mellow out, since I feel like it is totally being attacked! Everything I'm feeling is very much like MS, which I know Lyme can mimic but I can't help but have a little worry! Did Klonopin help you when you weren't taking Rifampin? I've done ok with a very small dose of Ativan when I really needed help.

Girlie- Thanks again for all your help! Sorry I sound so desperate...which I guess I am!! I guess the thing that I'm having a hard time with, is that these symptoms haven't really popped up since the very beginning way before treatment. Is that normal? I'm just concerned that treatment doesn't seem to be working. I know the CD57 isn't super reliable but it also went down from 70 to 42. I'm doing my very best to try not to get to worked up or scared since I know that will never help me but make things so much worse...but it is hard! As far as the treatment plan goes I was on Malarone, doxy (think for awhile it was augmentin), azithromycin, cryptoplus all together for a few months, then we tried to add artemisinin and then diflucan and I just fell apart...not quite as bad as this, but still bad. So we stopped everything and slowly added doxy back and malarone and a then later a few drops of BLT, I got up to about 14 drops and had just made it back up to 2 malarone in the am and 1 pm. It doesn't really seem like a herx since no amount of detoxing seems to help so I don't know what it is!! Thanks again for your support!

Regular Member

Date Joined Dec 2017
Total Posts : 156
   Posted 3/10/2018 9:14 PM (GMT -6)   
I also have many of those symptoms the pscholgical ones are the worst for me! I do feel alot better after detoxing I think that was a big problem for me and Im hoping I learned a lesson. I also get in the trap of turning a corner and then going down hill latley my down hill have been better than last year about this time so progress is being made. I hope to have enough funds to get into a llmd in WI in June. Do you ever get sweats and red in the cheaks? I know the medical system around her will test for lupus. I am confident to say its not lupus because it happens around the same time every month.

I know it hard but you can do it!!! I miss some of the old things like going for a drink or eating a cheat meal. Which I still do every now and then (BEEN BOOZE FREE). My gut or second brain is telling me that this will be remitted even though the future is uncertain. YOU WILL GET THROUGH THIS AND YOU ARE COURAGEOUS!

Regular Member

Date Joined May 2017
Total Posts : 398
   Posted 3/10/2018 10:48 PM (GMT -6)   
Thanks for the encouragement Woodduck12! I know what you mean I miss my old life too! Having a big glass of red wine and a big bowl of popcorn...although I do sometimes have the popcorn. I really did take my health for granted, never really gave it any thought, but I know if I ever get it back I will be beyond grateful every day! It's so great to have the support and encouragement on this forum!
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