Bell's Palsy on 3/2/2012

Discussion in 'Fibromyalgia Main Forum' started by pastorwife, Apr 19, 2012.

  1. pastorwife

    pastorwife Member

    I haven't been on here much lately, but now I am just not getting out and about like I would like to. On 3/2, I was taken to the ER w/Bell's Palsy on the right side of my face and numbing on the left side of my face. I was sent home w/steroid and anti-viral. On 3/4, I was admitted to a different hospital as the left side numbing spread across my face to my nose and roof of my mouth.

    The process of uncovering the true cause of this has been an eye opener. Lots of bloodwork, CT scans, ultrasound, MRI/MRA's. No answers yet. Lots of guesses. Right now, neuro is trying to rule out Lyme's and said that even tho it was negative on 3/4 that it might take time for it to show up on a blood test. I've had an EMG (one doc thought I had carpal tunnel due to severe pain in my left arm that developed during this time), an EEG and more bloodwork yesterday.

    I'm getting rather impatient with this whole healing process. I do have over 85% recovery of the paralysis on the right side and full recovery on the left side of my face. I was working 2 days/week and have only worked 4 days since this started, usually on a Monday. By my next workday, Thurs, I am exhausted. It seems like the simple task of going to appts and doing laundry once a week (started that this week for the first time) are just too much.

    So here I sit at home, in pain, exhausted, wondering how long this recovery is going to take, if it will ever get better. Wondering if it's Lyme, if it was some other virus. Wondering if my life will ever get back to my old 'normal' which wasn't much, but was more active than this. I try to go someplace, and I end up having to stay home or turn around and go back home. Feeling like 1 step forward to 2 steps back.

    I went to a new rhuematologist and he believes I have most CFS with Fibro secondary. He is running a test for thyroid antibodies as I was hyperthyroid when admitted to hospital and they took me off my Synthroid. Family doc put me back on 2 weeks later after blook work showed I really am hypo and need to be on med. Rheumo thinks the dose has to be monitored better. So then I wonder if this exhaustion and pain is just my thyroid.

    I'm trying to muster up some more patience as I wait for some more answers. If all comes back 'normal' (excluding the thyroid test), then I will be getting a spinal tap (go back to nuero in 4 weeks).
  2. Nanie46

    Nanie46 Moderator

    If you have Lyme, which is very possible with Bell's Palsy, steroids are absolutely contraindicated according to Lyme expert Dr Burrascano.

    See page 12 of the following paper, where it says "Never give steroids...":

    See page 7 for info on testing. The ELISA (Lyme screen) is not reliable and is not even recommended.
    Western blots should be done at a lab like Igenex, who tests for more bands and is a specialty lab for tick-borne infections.

    There is a new Lyme culture test that does not rely on an antibody response:

    It is not likely that your Dr will know any of this, since most Dr's are not Lyme literate even though they think they are.

    Many people with lyme only had an officially CDC negative test result. The antibody tests are very unreliable.

    It is a mistake for any Dr to rule out lyme based just on a negative test result.

    Check out the symptom checklist on pages 9-11 of the link I posted above.

    Pain and fatigue are very common lyme symptoms also.

    Here is some more info too:

    You can find a Lyme literate MD by posting on's Seeking a Doctor Board.

  3. kch64

    kch64 New Member

    How are things going? Any update on your results? Thyroi
  4. pastorwife

    pastorwife Member

    MRI of neck shows a 'mild disk problem' and lab work for Lymes and similar illness came back 'normal'. Neurologist wants to see images to he can determine if disk problem is causing the pain in my left arm. I'm still very tired and in pain. Using my TENS unit helps a little.

    I go to the family doc this afternoon so hope to hear about the thyroid levels and tests ordered by rhuematologist.

    I've worked up to 8 hours (1 day) a week. I go in Monday and can't make it in for Thurs. I realized that on Tues I might be over doing it. Laundry and usually 2 appts. I'm not doing the laundry this week, so will see if that is aggravating the situation.

    Still trying to be as patient as I can waiting for results to come back. Neuro will talk about a spinal tap at appt. in May.
  5. kch64

    kch64 New Member

    Glad you are getting some information. Keep us posted.

  6. Nanie46

    Nanie46 Moderator

    Please keep in mind that testing for Lyme is very unreliable, so getting a "normal" result is not unusual even for people who have lyme.
  7. pastorwife

    pastorwife Member

    Yes, Nanie46, that's one thing I've learned and my neurologist keeps reminding me...a negative isn't a true negative...only a positive is a true positive. My doc wants to review MRI results on my cervical spine (the actual images) as the report has found some problems with c7 but declared them "mild". He believes that is the key to the pain I have in my left arm. Then he will determine if a spinal tap is now in order. MS & Lyme are the 2 top contenders at this time. Right now Meloxicam has the pain under control or I should say 'tolerable.'
  8. Nanie46

    Nanie46 Moderator

    Wow, a neurologist actually knew that a negative lyme test might be a false negative! I give him credit!!

    Perhaps you could consider getting the new Lyme culture test from Advanced Laboratory Services: