posted
I haven't experienced facial paralysis, but I have experienced facial twitching and this sensation of my facial muscles seizing up, for lack of a better description.
It seems to be contained to the right side of my face, but sometimes I'll also get it on the sides of my mouth and under my chin.
In my 20 years with Lyme, this only started a few months ago and occurs sporadically. I've been on abx for over a year and a half now.
-------------------- Jennifer Posts: 266 | From Ocean County, NJ | Registered: Aug 2007
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TF
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posted
Nobody can say who is more likely to get bells palsy or when. Lyme can strike any nerve in the body at any time on anyone with active disease. Bells palsy is caused by lyme attacking the facial nerve--one on each side of the face.
I had bells palsy for 3 years not knowing what it was. It was mild, so would be called facial drooping. My husband and I discussed getting me a face lift (which I never thought I would ever consider) because of how terrible I looked (like I was scowling). It was bad. In pictures, it really looked bad.
Then, one day out of the blue after 3 years, I woke up and my face was back to normal.
Once I was diagnosed with lyme, the memory of these 3 years came back to me and I knew then it was bells palsy--bilateral in my case.
Bilateral is highly unusual and is nearly always caused by lyme disease.
It never came back, not during treatment, etc.
I did get trigeminal neuralgia during lyme treatment. That was awful (and "awful" isn't an awful enough word to describe it). I also got horrible burning in the jaw pain that ended up being treated by a dentist performing 2 root canals to no avail and throwing up his hands and sending me to an oral surgeon who said it was "inflammation." Yeah, from what? It lasted for months. I lived on pain pills and anti-inflammatories. This also was lyme disease, based on my research.
So, I had my share of facial pain and other maladies caused from lyme. The bells, however, did not cause me any pain--just deep facial creases evenly on both sides of mouth. Like a scowl !!!
I also had bad dry eye and dry mouth and needed professional treatment for both.
By the way, all these symptoms resolved with good lyme treatment. I am fine today--4 years since i finished treatment.
Here is a recent thread about bells that seems to indicate these people got the bells early on. Can't be sure.
Anyway, you can't make any rule about when it will attack. It can come and go or come and stay also.
posted
fyi, I had that facial numbness also, and now, almost 4 years into it, my eye droops, but not constantly. It kind of comes and goes, but over the past year, it's been around more, much to my chagrin. I hope you're getting treatment. At the time I first started experiencing the facial numbness I hadn't been diagnosed, and wasn't diagnosed for over a year, so by the time I started treatment, the CNS was deeply infected. Now it's harder to get rid of.
Oddly, this symptom didn't occur as frequently over the first 3 years as it does now. I'm not sure why, unless it's that my brain is herxing more now.
just wanted to add that I don't think this is a permanent thing.
Patti
Posts: 975 | From California | Registered: Apr 2007
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posted
Kreynolds, i just read your last response, and it sounds like you're herxing to me. At least that's what I think. I think the IV antibiotics you're on has been getting another layer of the infection before getting to this one. I wish I were on IV abx. I've only had orals for over 3 yrs now, and I think it's a slower treatment.
Posts: 975 | From California | Registered: Apr 2007
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kreynolds
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posted
psano2:
Its funny you mentioned "eye drooping" since having Chronic Lyme/CNS Lyme or whatever you want to call it, my right eye droops. Not here and there.. all the time. My wife actually had noticed it about a year ago and I looked in the mirror and was shocked! Well i guess thats what you get when you have really bad neuro Lyme. Thanks for your input!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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TF
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posted
The jaw locking is a separate lyme symptom. It is not related to bells palsy.
I did not have a feeling of numbness when I had the bilateral bells palsy, so maybe others can say what their case was like. I believe numbness is another separate symptom that is not part of bells.
Lyme can cause numbness anywhere in the body. That is extremely common.
There are no early signs of bells palsy. It happens instantly. Most people seem to wake up with it.
Here is a link to bells palsy symptoms by the Mayo Clinic. It doesn't mention numbness. And, it says it is sudden onset of paralysis and weakness. Says a few more things also, none of which you mentioned, I believe.
Why does this worry you? Worry about trigeminal neuralgia. It makes life unbearable--no exaggeration. Do a search on it. There was a recent post. Bells is normally bearable.
It doesn't matter if a person's case of lyme is severe or not. That does not determine whether or not they will get bells. Also, the vast majority of lyme sufferers NEVER get bells palsy. (I believe I have read that about 10 to 15% of lyme patients get bells.)
Posts: 9931 | From Maryland | Registered: Dec 2007
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kreynolds
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TF:
Well it concerns me because it's a reality with Lyme. I will look into trigeminal neuralgia , I have never heard of it, maybe I did but in laymans terms,lol! Thanks again!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
But, I didn't want you to have something new to worry about! Don't read the link if you think it will just cause you an additional worry, please!
Posts: 9931 | From Maryland | Registered: Dec 2007
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
TF:
Just did some research on it. This I will definately keep in mind! From what I researched and what you have told me it is very painfull! I am not in any pain right now thank god! Thanks again! I really appreciate it.
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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posted
I have had Bell's Palsy 5 times. First when I was nine.
Mine has been bilateral and each episode lasts aout 4 weeks. Mine is usually pretty intense where I have to tape my eye shut so it does not dry out. Which ever side its on usually droops pretty low....
Once it starts to "come back" I get severe facial pain as if the nerves are regenerating. That last about a week then back to normal.
I have just finally been dx'd with Lyme after MANY Years of suffering. I don't know how late stage I am, but we know I have had it for a while.
Sorry I don't have too much info to help you, but I thought I'd just give you my experience. Best of Luck to you!
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