So..since July I've noticed the left side of my face sometimes feels odd. It doesn't tingle or appear to droop. But...it FEELS like it wants to droop. It feels as if it is getting pulled down and back a bit.
It comes and goes.
This started a month after I reduced my Minocyline dose to 100mg 2x / day and added Zith (500mg / day) and Malarone.
Over the past month it has gotten worse.
Met with my LLMD on Monday and we discussed this. We are going back on 200mg of Doxy 2x/ day and I will also add in Rifabutin (this is with the Malarone.)
I've been on the Doxy now for 4 days and the feeling on the left side of my face is even worse. I also notice more "brain fogginess" when my brain had been very clear / normal for months.
Very concerned this is a relapse or progressoin of symptoms. Or it could be a herx.
Thoughts? Anyone else get this?
I've read from TF that Dr. B feels this can happen if treatment isn't agressive enough. Problem is, my treatment to day has been very agressive. OK..the Mino dose from July - Oct was low, but I also take Tindamax and a host of other treatments.
Very worried this means things are going badly and worry I may need IV.
Thanks for your comments.
Posted by Hoops123 (Member # 18333) on :
Good thing you have the app't with Dr H coming up. Hang in there.
Posted by LymeGoAway (Member # 25041) on :
Is there any possibility that you could have been re-infected?
Posted by bcb1200 (Member # 25745) on :
No way. No chance for re-infection.
I'm beginning to think it is a herx. I was on minocycline from April - this week (6 months). 400mg at first then down to 200mg.
I don't think Mino was doing much for me and that perhaps lyme was progressing while I was on it. Dr. B recently stated in one of his lectures that his patients typically didn't get any benefit from Minocycline, even though other docs patients do. He theorized it was due to a specific strain in his region that was resistant to Mino.
Perhaps I have this strain and the mino wasn't effective against it. Yes, I did start to also take Zith in June. But, according to Dr. B Zith is great against Babs and Bart, but not so great vs lyme. Biaxin is better and it should be combined with Amantadine or Plaquenil. I am on just Zith as it is part of my Babs treatment.
So perhaps the Bb was progressing all the while from April - Oct, causing me the facial issues and part of the reason why I was feeling so off the past few months.
I restarted the Doxy tuesday and I immediately knew it was hitting something as I had increased brain fog, TMJ pain, headache, etc. THings are flaring. And now that I think of it...it likely isn't lyme as it typically takes lyme 2 or more weeks to return (Babs / Bart are usually within days.) So..since it is day 4, it can't be a lyme regression. It's just too soon.
It's got to be a herx either due to lyme die off, or Bartonella as Zith plus Doxy is a good combo.
Here's hoping. I'll keep you posted. In the mean time I'll suck it up.
Posted by lymegal23 (Member # 28573) on :
I'm really interested in seeing what other people post here to answer this
It definatly sounds like a herx of some sort.
Your doc probably lowered your dose too soon.
Unfortunately everthing is just trial and error. UGH!
I hope this subsides for you~!!!
Posted by RC1 (Member # 31923) on :
I always herx when I just change abx. It doesn't matter that I've been on them before. It will always start 3-4 days in too.
I just went off Mino and started Doxy again and I herxed.
Posted by Lymetoo (Member # 743) on :
I would think it is quite possible. So sorry you are having trouble again. Praying you find the treatment you need.
Posted by sammy (Member # 13952) on :
I get eyelid twitching and drooping with Lyme herxes and flares. Sometimes the drooping lasts only a few minutes, other times it can last for days. It really is a creepy feeling when your face does this.
Posted by glm1111 (Member # 16556) on :
Absolutely possible. I had a Bullseye my LLMD found on top of my head after 30 yrs of being bitten, and had bells palsy appear in my face when I was herxing
Gael
Posted by BoxerMom (Member # 25251) on :
I had the exact symptom you are describing - the pulling feeling - but mine was on the right side.
This was preceded by several months of intermittent twitching in the muscles around my right eye.
For me, this was Babs flaring, and I had to increase my meds a great deal to get this under control. Sublingual B-12 helped, too.
Being stressed and overtired also contributed to the facial pulling.
I also experienced pain in my teeth. All of these were new symptoms for me, after 3 years of consistent treatment. Babs' herxing produced the same set of symptoms.
I just changed from Babs' meds to Lyme and Bart meds, and I am herxing like crazy. Honestly, I can't believe my pathogen load can still be high enough to produce this level of herxing.
Unreal.
Posted by Shahbah (Member # 28735) on :
I get that a lot too, on the left side of my face, but i always wonder if it's froma flare or a herx, how do we know?... for me it also comes with headaches...
Posted by jackie51 (Member # 14233) on :
I've had this symptom on and off for 25 years. I'm not sure which infection it is though.
One thing to remember is that there are so many infections that haven't even been "discovered" that we carry. Hopefully we get lucky and the arsenal of abx we take for lyme & co will hit them.
Good luck and I hope you're feeling better.
Posted by lightfoot (Member # 2536) on :
Hi bcb! Sorry you are having puzzling stuff going on. I can only share my experience.
I had mild bells palsy on the left side prior to treatment on and off. Also for months while being treated with IV Rocephin. During those many many months I didn't have much in the way of herxes, I put this down to herxing.
I haven't had it for many months since off of ABX.
I also had a perfect bulls eye appear while doing the IV Rochphin. There was absolutely no chance that I had been reinfected.
I know that some symptoms are more scary than others but I try to remember that a symptom is a symptom and can appear at any time and may not be a reflection of the tretmamt. It's been my experience anyhoo.