posted
Besides my fatigue and pain -- I would say that my most annoying, and most debilitating symptom is in my mouth.
I can not talk without straining from the bottom of my throat. Also: my tongue never feels like it is "working correctly" (if that makes any sense)
Going from certain syllables, to certain other syllables just don't happen as easily. I just tried to record a phone voicemail greeting message and had to do it 7 times. I couldn't say "I can't get to the phone" It was the transition from "cant" and "get" that I was having trouble with. People tell me they don't notice -- but when I speak it FEELS different than it used to. It's like my tongue is learning how to move again -- or like its forgetting how.
I have high EBV levels (still) and I am going to an ENT (as reccomended by my LLMD) to see about getting my tonsils out. Maybe this is stemming from them. I don't know.
All I know is I hate talking to people now because of how it feels to talk. It just feels uncomfortable -- physically.
I am currently on Doxycycline and Omnicef. This will change at my 3 month marker most likely (I've only been on tx for a little under 2 months). I have to talk to my doctor about this anyway: but I figured I would ask here too. I am at my wits end.
Rocephin / Zithromax / Supps Posts: 107 | From Plainview, New York | Registered: Sep 2008
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bettyg
Unregistered
posted
if GENEAL doesn't stop by, go to SUPPORT to look for her ok!
she's had problems and was a speech teacher...
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I've had many of the problems you describe. My speech just freezes or gets stuck for seconds - seems like minutes.
It happens more in new environments, busy environments with lots of stimuli (to me). It happens with new people - or old friends who wear earrings or have a new pair of glasses - or when someone even blinks. My brain just can't track everything.
The speech thing is very scary. I even saw a neurologist and my speech was awful. But not on all words - more when the fatigue hit the floor or I could not think of words.
Often I'd get stuck on vowels - it sounded like a kid playing and holding a long word while going over railroad tracks - bumpy.
The neurologist actually looked at me and said my speech was "just fine." It clearly was not. But he also said the the 3 positive tests for various tick-borne disease from Igenex meant nothing. That there is no lyme in my state so I had to be just "fine."
The speech can improve - mine has - but I hope you have a LLMD to determine how much is temporary from lyme - or if you should be assessed further.
Actually, this sort of thing can also be connected to the inner ear. With lyme, inner and middle ear function is often affected and the brain gets overloaded. The the speech stalls. Very complex.
When your speech gets stuck, just stop. Slow down. Try to swallow or yawn. Soon you will be amazed that you will think of different words that are easier to mouth. I had trouble with "seven" and my phone and address both have several. I wanted to move to #1 Oak St. - just to have an address I could give out.
This can get better. Again, I hope your doctor can guide you.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I've had many of the problems you describe. My speech just freezes or gets stuck for seconds - seems like minutes.
It happens more in new environments, busy environments with lots of stimuli (to me). It happens with new people - or old friends who wear earrings or have a new pair of glasses - or when someone even blinks. My brain just can't track everything.
The speech thing is very scary. I even saw a neurologist and my speech was awful. But not on all words - more when the fatigue hit the floor or I could not think of words.
Often I'd get stuck on vowels - it sounded like a kid playing and holding a long word while going over railroad tracks - bumpy.
The neurologist actually looked at me and said my speech was "just fine." It clearly was not. But he also said the the 3 positive tests for various tick-borne disease from Igenex meant nothing. That there is no lyme in my state so I had to be just "fine."
The speech can improve - mine has to some degree but I have a long way to go (and I used to give speeches before large crowds). I hope you have a LLMD to determine how much is temporary from lyme - or if you should be assessed further.
Actually, this sort of thing can also be connected to the inner ear. With lyme, inner and middle ear function is often affected and the brain gets overloaded. The the speech stalls. Very complex. Be sure to tell the ENT you see about your speech.
I saw a neurotologist - one who has neurological training beyond beyond an ENT. He explained how much the ears have to do with all sorts of neurological functions - including speech.
Keep track if this happens more around fluorescent lights or mini-blinds or other sorts of visual or auditory settings or If perfume or cleaning chemical exposure affects this, too. (If so, switching to all unscented products can help).
When your speech gets stuck, just stop. Slow down. Try to swallow or yawn. Soon you will be amazed that you will think of different words that are easier to mouth. I had trouble with "seven" and my phone and address both have several. I wanted to move to #1 Oak St. - just to have an address I could give out.
This can get better. Again, I hope your doctor can guide you.
It seems that it is not as much of ap roblem with slurring, as it is a problem with the pronunciation of certain syllables on top of the way my tongue seems to be working. I don't really have too many cognitive problems. (As in earrings or eyeglasses wouldn't distract me)
Sometimes I forget words, but it's nothing too severe. It's more the tongue issue that bothers me so much
It is good to hear that all these speech problems can be resolved though!
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