Bells Palsy

msmagooAugust 14, 2007

My 19 year old daughter woke up yesterday with Bells Palsy, we've been to the doctor and have rec'd medication, she was also tested for Lyme disease. I've heard horror stories about it never going away, the doctor said it could take weeks or months. She's taking it really well, please give me some encouragement, the doctor says it is fairly common. Thanks, Magoo

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My DH had that, so I know it well.

His Bell's appeared spontaneously (and suddenly) about 36 hours after he had had major surgery and I totally freaked because I was sure I was looking at him having a post-op stroke. We were back at the hospital as fast as I could get us there.

(His BP symptoms were unilateral facial droop, and it was only visible for a few days before going away completely and never returning, not even more than three years later.)

The ER doc was a bit perplexed, but while we were waiting for the neurologist to arrive, I happened to ask about the results of the pre-op blood work. We live in an area of endemic Lyme disease and in a 19th c., always under reno lead paint infested house so we always ask for a lead titer when any blood is drawn and I just happened to have also asked for a Lyme anti-body test when they did the blood work for the surgery. The Lyme PCR test takes a few days and my DH had already been discharged to home before the results arrived. As soon as the ER doc saw the Lyme test results she said the BP was likely the result of Lyme, and just coincidental to the surgery, and not a stroke as we had feared. My DH had had a single, reaction-free (i.e. no skin rash) tick bite about a month earilier.

Anyway, my DH was re-discharged with scrip for 30 days of oral Doxycycline for the Lyme and an appointment with an infectious disease specialist. And that's when it got a bit more troubling.

The ID doctor was not happy that my husband had begun taking the Doxy before having a spinal tap done because his belief was that Bell's Palsy as a symptom of Lyme indicated the possibility (even likelihood) that the Lyme had progressed to neurological-stage Lyme disease with its ominous possibility of serious, or even permanent, organic brain dysfunction if left untreated, or not fully treated. My husband had the spinal tap right away and a week later it came back pos. for anti-bodies to Lyme (at least enough of the correct ones, and not equivocal), so unfortunately he had to move on to the next level of treatment.

That was hard to face up to, but he did it: Implantation of a PICC line (a short-term, but left in place for the full course of treatment - 1 month- IV catheter in his arm) so he could have daily doses of ceftriaxone/Rocephin antibiotic. That's the only one used to treat Lyme beyond the Doxy level. He went everyday for a month to a nearby hospital to have the infusion done. Despite our worries the PICC line/Rocephin treatment went just fine, except for the collossal pain of going there everyday. In some circumstances you can get the drugs and infuse yourself at home, but for various reasons that was not possible for us. At the end of the treatment he was deemed cured of the Lyme, because he is completely asymptomatic (of course his only symp. was the Bell's and that went away before he'd even had the tap done), and because he's had no other symptons of indicating progression of the disease. No further blood testing has been done because he will probably always test positive for the Lyme anti-bodies and there is no real quantitative measurement.

Now I am not telling you this to worry you, but to give you info in case the Lyme test comes back positive. I think many other regular docs (like the ER doc, but not fortunately, the ID specialist) might have said just stick with the Doxy and don't bother with the spinal tap, but the ID doc was correct because the tap came back positive, and therefore my DH did need the IV Rocefin. If he had not gone ahead and had the tap, he might have just gone on his merry way until other, more serious, problems developed done the road.

IV treatment with the ceftriaxone is quite expensive: the daily dose runs more than $600 just for the drug, but most insurance companies have direct purchase arrangements with drug companies that bring this down, considerably, even if you as we do have one of tose high-deductible policies.

Lyme disease has unfortunately attracted a whole lot of controversy over the best treatment, and a goodish (and quite vociferous on the net) number of Lyme disease patients believe they have contracted a chronic, non-curable, disease needing months and months, if not years, of antibiotic treatment. And it has also spawned more than few questionable Lyme disease centers preying on patients that believe themselves incurably afflicted.

In doing my research I was given the name of such a center from someone my SIL -an RN herself-knew. When I spoke with this Lyme "specialist" center they wouldn't see us unless we brought a certified check for $5K to the evaluation/initial consultation. (And we have excellent health insurance, so that wasn't the problem.) I am just pointing this out because these Lyme "specialists" turn up right away in google searches, and many of them may be quacks. My advice would be to stick to your best local infectious disease docs, connected to major teaching hospitals.

Now, having gone on at length about the Bell's/ Lyme connection, I want to point out that Bell's does happen for other reasons, though it apparently is becoming more commonly associated with Lyme as Lyme is more-often diagnosed.

At any rate, even if all the tests come back positive, and there is need for advanced IV treatment please don't make yourself too crazy. I had never heard of this, and was unduly worried about all aspects of it when we were suddenly faced with it. But the most important thing is that my husband has recovered fully from both the Bell's and the Lyme. I am hoping your daughter recovers equally well, from whatever she has.

I don't have a working email connected to this site, but if you want to "chat", let me know by posting here and we can get connected somehow.


    Bookmark   August 14, 2007 at 11:51PM
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My DH had it too - in his case it was caused by a case of shingles that had attacked his facial nerve. It took awhile for the characteristic shingles lesions to appear on his ear which led to the definitive diagnosis. In the meantime he was being checked for brain tumors, etc. Once the shingles was treated the Bells Palsy disappeared. He did have some permanent impact on the inner ear/equilibrium but he quickly adapated to that.

    Bookmark   August 15, 2007 at 12:31PM
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I have had Lyme 2x- the first time with the Bells Palsy- scary but it did go away after 2 months and now 5 years later no problems. I did the doxy too and felt mentally slow from the Lyme but after a few mo was fine. I looked like a droopy sided person for a while but it did go away. good luck

    Bookmark   August 16, 2007 at 4:52PM
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I am a Physical Therapist Assistant and have treated Bell's patients many times. It can also come with exposure to very cold temperatures. Some MD's have referred to it as a virus (possibly contagious) but I don't know about this. We have treated it with facial massages, facial exercises and electrical stimulation. I'm sure she'll improve. Most of our patients finished their treatments (about 6 months) and were doing amazing. I'm sure there are newer treatments out there. This has been my experience with Bell's. Much luck, thing's will be ok!

    Bookmark   August 16, 2007 at 10:19PM
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I had Bell's Palsy about twenty years ago when I was in college. At that time, they didn't seem to have any treatment or prognosis for how long it would last. In my case, it went away spontaneously after about a month.

    Bookmark   August 18, 2007 at 11:00AM
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Magoo, how are you holding up, and how is your daughter?

    Bookmark   August 18, 2007 at 8:23PM
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My friend had Bell's as a result of Lyme disease. It did go away after awhile. Unfortunately in his case, he looked better with it.

    Bookmark   August 18, 2007 at 9:44PM
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Magoo, I developed Bell's Palsy after delivering my twins, back in 2003. It was the weirdest thing, in that it progressively got worse over the period of a few days, and after having it for about a week or two, it just went away. I first noticed that my eye wouldn't close correctly, and then the entire side of my face (can't remember which side) went droopy. Please have her follow the advice above, but hopefully it will go away and not be the result of something more serious.

    Bookmark   August 19, 2007 at 10:06AM
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DH had Bell's Palsy about 8 years ago. That was one scary trip to the ER. He regained the movement in that side of his face within a month.

It was hard for him. I can't imagine how hard it would be for a 19 year old to cope with it.

Hope she is doing better.

    Bookmark   August 19, 2007 at 2:26PM
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Thanks to all of your for your well wishes. DD is doing about the same, she's back in college now. She has a follow-up appt on Friday, hasn't heard back from the Lyme disease test, so I guess that is good news. She says she is feeling little twitches in her eye and lips, but it can't go away soon enough. It's been a week now.
Thanks, I'll keep you posted.

    Bookmark   August 21, 2007 at 2:49PM
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Great News, my DD has her face back, she's back in college, but she e-mailed a pic of her beautiful smile. Bells lasted about 3 weeks for her. Thanks to all of you for the kind words and info.
Thanks again

    Bookmark   September 16, 2007 at 11:47AM
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Hurray!! I'm so glad for you, msmagoo.

    Bookmark   September 17, 2007 at 1:41AM
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Mrsmagoo, I'm so glad your daughter's BP resolved itself.

Just to add to the info for anyone else who may come upon this...

I had BP about 3 years ago. Long story, but I noticed I couldn't wiggle my ears... went to look in the mirror and saw that my smile and all facial movements were asymmetrical. My DH is a doctor so he suspected BP and we went to the ER. The ER doc diagnosed me and was about to discharge me with some oral steroids, but decided to call up to ENT and found a doc there on a Sunday afternoon. She was so very helpful -- gave me eyedrops to keep my non-blinking eye from drying out, and some ointment to help ward off eye infection. And taught me how to tape my eye shut so I could sleep. Yep.

One of the side effects of the oral steroids is depression, and I was in a serious funk. Maybe due to the meds, maybe due to being self-conscious about my non-blinking eye and droopy mouth. Also, some foods were hard or impossible to eat and I kept biting my tongue.

I was lucky, and it was pretty much gone within a month.

I have an acquaintance who got BP after an attack of shingles, and she has had it, quite severely, for months.

I found that it is common during the 3rd trimester of pregnancy. I was afraid I'd have a recurrence during my 2nd pregnancy, but luckily I didn't.



    Bookmark   September 22, 2007 at 10:36PM
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