your bells palsey experience here. (IGNORE POLL) oops

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zizziz
Regular Member


Date Joined Jun 2009
Total Posts : 41
   Posted 6/26/2009 8:58 AM (GMT -6)   
What scares me the most is reading about this. It can go away with no treatment, it takes 3 weeks to go away, it takes 1-3 months, 6-9 months , up to one year, or it can not totally go away meaning some perminancy.

If you have had this, or currently have it, how long did it take to go away? did you fully recover? Are there varying "degrees" of palsey? I have had it for about 1 week and I can't blink my left eye, whistle, raise my eyebrow, smile on the left side, or eat, I feel like my mouth is swollen, I can't drink out of a glass, and its hard to eat. also I have a hard time with some letters, like "f".

I was told and read about B12 and B vitamins. if you have a recommendation of a certain type, brand, or dosage i'd love to go buy it. I bought this:

natures bounty

high potency balanced B-100 B-complex

b6 100mg 5000%
b12 100mg 1667%

a bunch of others like thiamin, riboflavin, folic acid.....

is this what turns you pee electric neon yellow?

thanks!

veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 6/26/2009 11:46 AM (GMT -6)   
I had mine over a year. and while others say it is completly gone I still see it a bit in my eye.
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 6/27/2009 5:59 AM (GMT -6)   
B vitamins turn the pee neon yellow - that is good, it means you are absorbing them. But you need more B12 than what is in that supplement... MD's who treat Bell's Palsy usually prescribe 1000mcg/day at a minimum. And you may need the methylcobolamin form of B12 instead of the more common cyanocobolamin.

Does Bell's Palsy of the gut count as Bell's Palsy for the sake of your survey? If so, I've had varying degrees of it for a long time. Onset was gradual and usually would come in flare-ups and remissions and it affected mostly my stomach and large intestine, until June 2008, when I woke up one morning completely unable to swallow anything...it was as if my swallowing muscles were non-functional and they spasmed whenever I attemtped to use them. I also felt numbness down my esophagus. Tests showed I also had slow stomach emptying but the doctors couldn't explain why my esophagus wasn't working. An LLND said Bartonella could be doing it, so could Lyme (V.T. Sherr wrote an article about the gastrointestinal effects of Lyme... http://thehumansideoflyme.net/viewarticle.php?aid=62 ). I still can't swallow much of anything, and it is a whole year later. I hope it isn't permanent...

Cheers,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), probiotics, homeopathy.


zizziz
Regular Member


Date Joined Jun 2009
Total Posts : 41
   Posted 6/27/2009 8:58 AM (GMT -6)   
razzle,

I read about methylcobolamin, is that a seperate element in a bottle or is it part of something else. Is that something over the counter at GNC or something? I will look for it today. I accidently made this a poll so ignore that part! :)

1000mcg is that 10x the dose I am taking now? if so that would be 16,000% of the daily value!?

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 6/28/2009 12:45 AM (GMT -6)   
Methylcobolamin is a different form of Vitamin B12, and it can be purchased at a health food store or online. The body will not absorb what it does not need of the B12, and it is water soluble (thus easily eliminated) so don't worry about overdosing. If you are deficient, it takes a lot to refill the stores of B12.

Take care,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), probiotics, homeopathy.


Minx
Regular Member


Date Joined Aug 2008
Total Posts : 62
   Posted 6/28/2009 9:29 AM (GMT -6)   
I had Bell's for 6 weeks twenty years ago with my first round with Lyme.

The family doc did not have me on B12 at the time, but prednisone! Ugh.

I think with most people there is a residual sign of Bell's. I think when I smile, there is a minimal uneveness to my face (maybe eyes & mouth) if someone is looking for it (maybe more so if I am tired) - which I have also noticed on others.

Most seem to improve. Hope yours goes quickly!

zizziz
Regular Member


Date Joined Jun 2009
Total Posts : 41
   Posted 6/28/2009 10:11 AM (GMT -6)   
thanks raz. I already ordered the methyl b12, and I am going to get some at the vitiminshoppe in about 15 minutes.

minx, did the prednisone do anything for you or no? I am 1/2 regretting that I started to take it based on what I have been reading. I am on day 7 of 10 with 2 pills today tommorrow then 1 and 1 so i'm almost done. does the bells palsey just go away all at once or does it go away slowly? it sure came on fast within 2 days.

sometimes I get some tingling in my lips or under my eye, kinda like tiny muscle spasims, can that be good , bad , or indifferent?

Minx
Regular Member


Date Joined Aug 2008
Total Posts : 62
   Posted 6/28/2009 5:19 PM (GMT -6)   
zizziz,

I felt the prednisone did nothing -so did the family doc I was seeing. He sent me to a neurologist about the 4 - 5th week because he thought I was not going to get better since it was a long time.

I did not show any improvement until close to six weeks and, if I am remembering correctly, the Bell's went away on it's own gradually - I think it was gone in less than two weeks from when it started improving.

My Bell's came on within two days too. My first sign was having trouble with my contact lenses. I had to use tons of eye drops so my eyes did not dry out. I still remember showering and sleeping with my eye open - the worst for me.

I don't know about the tingling. I had had intermittent tingling around my jaw since my first infection with Lyme. I am on my third time now and I get rolling tingling/numbness in my head, face, lips.

I wish you a speedy recovery from your Bell's Palsy. Let us know how you make out.

Minx

Evan Fox
New Member


Date Joined Jun 2009
Total Posts : 1
   Posted 6/29/2009 7:45 AM (GMT -6)   
MINX
i got bels from Lyme about 2 years ago - and they still put my on prednisone - i guess thats bad news? why?

also- i have the same thing - i can feel the muscles in my face not working - though visually its not bad - im sure when im 80 (hopeflly i make it) my face will be a little f'ed up

lyme sucks - im amazed at how crapty our efforts are to cure this disease. american health care - not much care at all

Minx
Regular Member


Date Joined Aug 2008
Total Posts : 62
   Posted 6/29/2009 9:25 AM (GMT -6)   
Evan

From what I have heard, (I am no expert) Prednisone (steroids) suppress the immune system. So if you have a brand new infection (Lyme) and you take a medication to suppress the immune system =Whamo! That is how I understand it.

I think the bottom line is steroids can make the Lyme infection worse but I think if someone is on antibiotics at the same time, a low dose steroid might be okay. I learned that from the vet. But again I am not an expert, just learning along the way like you.

This disease is challenging for sure. I am equally amazed how it seems like hardly anything is being done "scientifically" for this disease. Our health care system is a problem for sure, but I see many people not from the U.S. who are coming here because they do not have LLMD's in their country. Great Britian is one. Even though there are problems with our system, I feel very lucky that not to have to go to a different country to find care - that amazes me!

Minx

nariko
New Member


Date Joined Jul 2009
Total Posts : 3
   Posted 7/7/2009 8:42 PM (GMT -6)   
I had bells palsy for about 3 months, but it was only really bad teh first month. I had trouble eating as well, though I could close my eye. I only had to use eye drops the first week or so. My face didnt' droop, it was just paralyzed.

Get LOTS of rest. I rested and reflected, meditated and took up tai chi. It seemed to work okay for me.

No one can tell I ever had bells palsy, though my husband can still see some evidence, and so can I... but really, in the grand scheme of thing... it's really not that bad.

Best of luck with your recovery!

zizziz
Regular Member


Date Joined Jun 2009
Total Posts : 41
   Posted 7/7/2009 11:08 PM (GMT -6)   
funny thing with this is that only 2 weeks later, some of the paralyzation has gotten better, i don't know why so soon because I have have never read anything less then 3 weeks to a month. I still can't blink my eye but I can do about 50% of the movements back. I am hoping for close to a full recovery. thanks for the kind words!

rosesinjanuary
Veteran Member


Date Joined Oct 2007
Total Posts : 748
   Posted 7/20/2009 8:53 PM (GMT -6)   
I had partial bells as a lyme symptom during periods of illness. My daughter graduated I didn't know if i could make it (I fake as much as humanely possible) but my mouth was curled up i couldn't smile i see it in the picttures but it goes away like one or two days if not a day its just a come and g0 like the others buts its like a partial not involving the eye just mouth. lisa

Hopegirl
Veteran Member


Date Joined May 2008
Total Posts : 704
   Posted 7/22/2009 2:24 PM (GMT -6)   
had it 11 yrs ago right after my son was born. I freaked out and was so sad and I remember wearing a patch over my eye. It went away after about 2-3 weeks....my doctor (general) tested me for Lyme but it came up negative, few months later I found a deer tick, no bulls eye so they did nothing for me...now I wonder..

 
 
Monica
 
Lymes, Fibromyalgia, Anxiety, IBS, Reflux, Insomnia,Sleep Apnea
Current Meds: IV rocephin; Opana 15mg
Taking it one day at a time.... 

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