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Lyme Disease Message Board


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Lyme or Meniere's?
Mar 28, 2009
Hi,
I've spent the last 3 hours reading many posts on every forum from TMJ to Lyme to ENT, and many others along the way. I have gained more information and continue to learn and try to get to the bottom of my problems.

Here is a quick overview, Nov. 08 I was stricken with a violent attack of vertigo, I have lived with BPPV for many years and it was a minor problem when laying down, this was horrible. I lasted 5 hours where I was crawling to the bathroom, crawling back to bed. Finally was able to get some meclazine down and slept for about 24 hours. When I was finally able to sit up and think I realized I could hear nothing out of my left ear. The following day I was able to sit at the computer, while holding on to every wall and chair to avoid falling. I found a local ENT who specialized in Balance Disorder. I was able to get in the next day. A friend drove, he did 3 hours of testing which basically told me I had profound hearing loss in my [COLOR="Red"]left[/COLOR] ear, some loss in my right, my balance was terrible and I should not drive. He gave me a steroid shot, an Rx for Acyclovir and told me to get on some Metyal B12, and wanted to see me in 3 weeks. I spent a miserable 3 weeks at home, no more vertigo, but terrible balance, fullness in my ear and very, very tired. Back to the ENT, more tests, same, if not worse results, referred me to Physical Therapist for Vestibular Therapy to help with my balance and an MRI and a B12 shot. MRI was normal, PT was helpful. Tried with Epley maneuvers to help with the possibility of BPPV, still could trigger the nystigmus in my [COLOR="Red"]left[/COLOR] eye at a certain tilt of my head. At the urging of friends and family, made an appt. with a Neurologist, she had additional MRI and an Evoked Potential Study for my hearing and more blood-work than I have ever had. MRI showed nothing abnormal, some narrowing, but nothing abnormal for my age, (48). The EPS showed no permanent nerve damaging in my hearing. She gave me an Rx for Tranxene to help calm my nervous system. The bloodwork showed I was B12 deficient, and she wanted the Lyme panal, Lupus and RA Factor retested. I called and asked that a I get a copy of all of the blook test results. The Western Blot Lyme, done twice showed positive P41.
I was able to resume driving after two months, my balance has returned. I saw the neurologist again on Thursday, she said there was nothing exept a spinal tap, that she could test. She felt the blood tests were all fine. I asked her to retest the B12. I discussed a migraine that I had experienced on Wednesday, the first one I have had in 2 years. I took Imitrex and meclazine for the nausea. At 4:00 am when my dog needed to go out, I let him out and suddenly ended up laying on the ground, aware and awake I was falling, but down. I got up, walked to a nearby chair, but was down again. She took my blood pressure sitting and laying and had me stand quickly and took it again. It did drop some and that is what she said happened. I had been in bed all day, hadn't eaten and my blood pressure got low. She said not to be alarmed unless it happened again. I have been freaked out, because this has Never happened before, I just pray it doesn't again!
I woke up Friday with swollen gum tissue on my [COLOR="Red"]left[/COLOR] rear molar, same side as my hearing loss. I was able to get into the dentists, where they have seen me for years and I have always complained about this tooth. It has a crown with a root canal, but continues to hurt. Now it is infected, and I see a endodontist, hopefully next week, but now I'm on Rx antibiotic to clear it up. I sleep with an INT device due to TMJ and teeth clinching. I had helped my migraines and jaw pain for years.
I have an appointment on Tuesday with a local Dr. who only sees patients for Lyme consultations one day a week. I was given his name by a friend who, along with her son, has been diagnosed with Lyme. Is there anything in particular I should be asking this doctor? What information can I provide to him that will be helpful?
I feel like I have written too much for anyone to read, but I have gained so much information from reading other's posts, that I hope this can help me and possibly someone else. I have always been an active volunteer with my two sons and their activities. I have had to slow everything down. My husband travels with his job and I have two teens, that goodness one with a driver's license (I never thought I'd say that!). They are able to get to school and to the store, food, practices etc. Thanks in advance to anyone who has any ideas. I will answer any questions promptly.





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