ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Can you please help me help a colleague by answering these questions?
Were you diagnosed with BP prior to Lyme or after Lyme diagnosis?
What was your BP treatment? Did it work?
How long did your BP last? Does it reaccur?
My colleague is 6 months into Bell's palsey and is not improving that much. She sees a neurologist who has not tested her for Lyme. She does not have any other symptoms that she knows of. She has dogs and walks them frequently.
Do you think she should be tested? Would you recommend IgeneX western blot?
What are the chances that her Bell's palsey could be Lyme?
Any other advice?
Thanks everyone!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
Were you diagnosed with BP prior to Lyme or after Lyme diagnosis? Prior, it was one of my very first symptoms.
What was your BP treatment? Did it work? Prednisone and Valtrex. Well, sort of. I started Doxy one week after the steroids and antiviral, so it's hard to say which, but I was having a resolving of the palsy before the doxy too.
How long did your BP last? Does it reaccur? Lasted one month or so. has not reoccured.
Do you think she should be tested? Would you recommend IgeneX western blot? ABSOLUTELY. Because when I went online to investigate BP, Lyme was listed second on the list of causes. All my docs pooh-poohed it.
What are the chances that her Bell's palsey could be Lyme? HIGH CHANCES.
What is she taking, or what did she take?
Posts: 236 | From Zionsville IN | Registered: Jan 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The chances that her Bell's palsy is lyme are good.
The state of Maryland now has a law that anyone diagnosed with Bell's palsy MUST be tested for lyme disease.
This law is about 20 years old. I believe that it is so important that lyme be diagnosed as quickly as possible (before it compromises the immune system) that any person anywhere who gets Bell's palsy should be tested for lyme.
My reasoning is that the cost is minor but the consequences are major to the person's life if it is lyme.
If the test is negative, that person has to still be on the look-out for lyme symptoms since the tests are not totally reliable.
In my case, I had a mild bi-lateral Bell's palsy that lasted for at least 3 years. It was never diagnosed as Bell's palsy because I never went to any doctor for it. I thought my face was sagging because I was in menopause (also from lyme, by the way).
The only thing I considered doing about it was getting a facelift. I never would have considered a facelift in my life, but this sagging looked so awful my husband agreed that I should consider it. I was in my late 40s at the time. I looked like I was always scowling, with deep lines on either side of my mouth.
This is called "facial drooping" in the lyme world, and it is a symptom of lyme. In fact, bilateral Bell's palsy is almost always lyme disease.
So, my Bell's palsy spontaneously resolved itself (woke up one morning and my face was normal again) and it took many more years before I was ever diagnosed with lyme. It took me studying lyme to even figure out that what I had had was bilateral Bell's palsy.
Since the Igenex western blot is the best test, that is the one I would recommend (or the new culture test for $500, of course). She must be sure the blood is handled properly. See the Western Blot "sticky" post at top of Medical Questions. Otherwise, your money is wasted.
Posts: 9931 | From Maryland | Registered: Dec 2007
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My current LLMD stated that Bell's Palsy is usually Lyme.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I am not sure of what all has been tried. I believe the neurologist was thinking of trying shock treatment again. She is very discouraged. When you don't understand Lyme though, I think it is hard to understand how a tick that you don't recall could cause Lyme and BP.
I remember years ago wondering how in the world a tick could be making my son so sick. It just didn't make sense and I put off testing properly.
My theory on my colleague is that her healthy immune system ( she is fit and trim) has kept possibly an old infection in check. She had a stressful fall and that is when Bell's palsey came out. Again, my theory.
Thanks Beth for the post.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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Julie
Posts: 3 | From Bahamas | Registered: Mar 2010
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Severe Bells Palsy was my first symptom with severe pain in limbs and rest of body following rapidly. Movement of arms was most affected.
Dr. K. states in seminars on Lyme:
Bells Palsy - means Lyme in every case he has. Dental Infections, not necessarily painful, Root Canals, contribute to the condition.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Wow! I appreciate the posts.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
The young girl two doors from me had BP and was treated for Lyme. She remains with BP now and with no other Lyme symptoms.
My best friend was bitten by a tick and had BP. He went to a acupuncturist and it resolved. Years later he is starting to get some joint pain and no other symptoms.
Posts: 2087 | From NY | Registered: Oct 2011
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"Until proven otherwise, a patient's unexplained facial paralysis is caused by the tick-borne spirochetes of Lyme disease"
Buhner's book has suggestions for treating BP as well...
Posts: 396 | From EAPennsylvania | Registered: Dec 2007
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
BP was my first symptom in 1988 & lasted only a week. An ELISA test was negative so the ducks said "could be MS" soon was a " probably MS"...finally after 17yrs of MS diagnosis found a LLMD and positive Lyme Western Blot.
The LLMD was the only doctor to bother to do the WB.
Bell's Palsy is an indication that the Lyme has already entered the nervous system.
BP may go away but the Lyme hasn't.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
Baylor Basketball girls play for the Championship Sunday night and their coach just got diagnosed. She also has hearing/ear and balance probs..BUT of course lyme's not an option.
quote:Originally posted by lymenow: Baylor Basketball girls play for the Championship Sunday night and their coach just got diagnosed. She also has hearing/ear and balance probs..BUT of course lyme's not an option.
- That's horrible!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Anyone else have experience with Bell's palsy?
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i didnt read all above i have experience with a close friend he had lyme for a long time but was not dx he got a bunch of tick bites in a short time(100) and got very sick and got bells and was in hosp - still not dx with lyme
a long time later(months-years) he got dx and txed did not work well
he had a lot of amalgams and rootcanals removed and his tx began to work but the bells never went away
duing thedental procedures he got bells on the other side
we aggressively gave him 400 mg doxy AND the prednisone pack they give you-i forget how many days and i KNOW all llmds say NO steroids...but in this case...he got the pred and doxy within 12 hrs...maybe with in6-8 hrs AND HIS NEWW BELLS WENT AWAY!!!
i have had llmds tell me to take pred short term for life threatening things like asthma...
all i know is he still has his orig bells but the 2nd one we got rid of by being really pushy and getting meds(we didnt push for the pred...but thats what er wanted to give him)-we got and used the doxy on our own
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I have had and still have problems with my jaw and teeth. My teeth chatter very frequently and I grind my teeth non stop. I also cannot stop screwing up my face when I make the effort to think or to speak on the phone. These facial problems have been going on for years. I do not really understand Bells Palsy but I do know that I experience serious neuro problems in my face.
BTW, thanks to a friend here I found Buspar and take quite a lot of it. It really helps, but does not stop it. Cranial sacral therapy helps a lot, too.
I am on Flagyl/Ketek which is of some help, but not enough. What the heck is going on???
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Thanks to the latest 3 posters. I appreciate it. My friend is now thinking about getting tested. We have a naturopath in the area that will test her. I emailed him last night.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
Something just jumped out at me...I am "fit and trim" too and soooo sick with neuro-Lyme. I can, gratefully, do so many things that other Lyme sufferers can't do. At the same time, I am so neurologically ill every single day. 3.5 years of tx (11 months IV) and still seeking wellness....TS
Posts: 566 | From West Coast | Registered: May 2008
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posted
i had BP after diagnosis, 5 years after diagnosis and it was due to cranial/facial nerve inflammation. What helped me were the steroids and going to an accupunturist and getting a TENS unit connected to the needles. This kept the nerves contracting the muscles. You may have to go 3 times a week, but I am convinced this helped.
Posts: 482 | From Oregon | Registered: Feb 2011
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posted
I have a friend that actually got bit by a tick and three weeks later had a bells palsy episode. Supposedly they tested her for Lyme but it was negative. This happened probably 15 years ago.
She continued to see a neurologist. Taking seizure medicine.
Two years ago she had a bad fall and now she can hardly walk. Has had tumors removed from her body and is in terrible pain.
I say YES! Get tested. I just wish I could convince my friend to see an LLMD.
Posts: 182 | From North Carolina | Registered: Apr 2011
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