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» LymeNet Flash » Questions and Discussion » Medical Questions » I am completely mute

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Author Topic: I am completely mute
lymeladyinNY
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I have spent the last two days completely unable to speak. It started with a bad "electric" headache in the back of my head.

At this point I don't feel like I'll be talking anytime soon. This has been really hard because life goes on.

I can't call anyone and I've been writing notes everywhere I go. It's so embarrassing.

It's also scary. And frustrating and maddening.

I don't know what brought this on and I don't know what to do about it.

Anyone else have this problem?

- Quiet Lymelady

P.S. - this is making it hard for me to sing along with my Mamma Mia CD!

--------------------
I want to be free

Posts: 1170 | From Endicott, NY | Registered: Sep 2006  |  IP: Logged | Report this post to a Moderator
Lymetoo
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I would HATE that!!

Have you called your LLMD??

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95732 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
disturbedme
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quote:
Originally posted by Lymetoo:

Have you called your LLMD??

How can she call?

I'm sorry you're going through this, lymelady! [group hug]

--------------------
One can never consent to creep when one feels an impulse to soar.
~ Helen Keller

My Lyme Story

Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007  |  IP: Logged | Report this post to a Moderator
Lymetoo
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[lol] I believe she has a husband!! [bonk]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95732 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
djf2005
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i did for about 2 weeks when i was very bad off.

no words could utter from my mouth. VERY scary.

it WILL PASS. hang in there. are you on IV?

this is kind of a sign that it might be needed, its a serious symptom as you well know.

derek

--------------------
"Experience is not what happens to you; it is what you do with what happens to you."

[email protected]

Posts: 2269 | From Lansdowne, Pa | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
feelfit
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Lymelady,

I have not experienced this, but wanted to lift you up with positive thoughts and prayers....

You have certainly had your share! Praying for healing to come your way.

feelfit

Posts: 3975 | From usa | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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I had that happen every winter from middle school through my freshman year of college. The docs, of course, could find nothing wrong.

Hot tea with lemon and honey was somewhat of a help, but only if I drank it constantly.

Sorry, I know exactly how miserable that is.

--------------------
sixgoofykids.blogspot.com

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
lymeHerx001
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wow!

What happenes when you try to speak. Can you make any sounds what so ever?

Posts: 2905 | From New England | Registered: Sep 2004  |  IP: Logged | Report this post to a Moderator
IMHisda
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This hasn't happened but my singing voice has definitely gotten worse. Can't sing the right note now. I asked a speech pathologist friend and he said it makes sense since Lyme effects muscles and muscles surround your vocal folds.

--------------------
RV

Posts: 249 | From Healing in USA | Registered: Mar 2005  |  IP: Logged | Report this post to a Moderator
bettyg
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praying your voice will return as quickly as it went away! [group hug] [kiss]
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Peedie
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I'm sorry....I have not experienced this but I can imagine it is very difficult. With this disease...I think...most anything can happen.
Get well soon!
Peedie

Posts: 641 | From So. CA | Registered: May 2008  |  IP: Logged | Report this post to a Moderator
Robin123
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That must be rough. I recall there were a couple weeks when I couldn't get the tip of my tongue to move. Am thinking this is coming more from the brain? From what I've seen, symptoms change and move around.
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Geneal
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Good news is that your language is intact....or you couldn't write this post.

I am a Speech Pathologist as well.

Yes, Lyme can affect muscles for voicing as well as muscles for articulation.

If you can't call your LLMD, then e-mail him asap.

Is it a voicing matter. Can't get a voice?

Is it that you can't get your muscles to coordinate to make speech sounds?

Is it that you can't find the words to say?

I have had speech issues. Mostly word recall and apraxia of speech.

Scary and frustrating.

Any swallowing issues?

Cranial X (Vagus) is often affected by Lyme.

This nerve innervates the vocal folds.

Please get in touch with your LLMD.

Hope this passes quickly for you.

Hugs,

Geneal

Posts: 6250 | From Louisiana | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
ticked-offinNc
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I agree with Geneal, call your LLMD. I had this happen years ago, before I knew I had Lyme. It only lasted a few hours.

My family thought I was looney-tunes. I just could not remember how to talk. The skill just vanished.

How are you doing now Lyme Lady? I will be thinking of you!

Posts: 261 | From Piedmont | Registered: May 2008  |  IP: Logged | Report this post to a Moderator
lymeladyinNY
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Hi guys, thanks for your kind thoughts.

This is so weird - I have a constant headache, but when it gets "electrical", then I have no ability to talk.

I open my mouth and nothing comes out, not even a whisper. I can move my mouth to form words.

Today, the headache lessened somewhat and I was able to speak for awhile with a thin voice. Then I felt the electricity and I opened my mouth - and nothing again!

Right now I am able to croak out words. It sounds like I have a bad case of laryngitis.

I called my LLMD this morning when my voice was thin and left a message but didn't hear back.

She wants me to go on IV per my last Monday appointment but my primary doctor who was sympathetic about my situation and who worked with my LLMD recently moved to another area.

Her replacement, is, unfortunately, a duck of the highest order. He told me he wouldn't insert an IV line for me unless I could "prove" I have an infection.

I think I will need IV to get deeper sometime. In the meanwhile, my LLMD is pushing ceftin to 1 gram and then in two months she plans to start tindamax. Finally! I've been wanting to try it for years and she kept saying no.

Thanks for listening to the mute one! - Lymelady

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I want to be free

Posts: 1170 | From Endicott, NY | Registered: Sep 2006  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
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Lymelady,

Hubby had this problem once early on before tickborne treatment started. He was actually in the hospital and the sitter that was staying with him called me at home to come in at 6:00 a.m. as he thought hubby had had a seizure. This was the first time anyone besides me had actually witnessed one of hubby's "episodes".

By the time I got to the hospital half an hour later hubby was unable to speak. At first I wasn't sure that he knew me. He was able to write some. Within a couple of hours his speech was back to normal. This was very scarey for him as noone was doing anything to help us at the time.

As this was during shift change you can imagine how little cooperation I got from the nurses and docs.

Glad you are doing some better. Definitely think this is a sign of brain inflammation.

Still wonder if additional Bartonella treatment would not be of more help to you than additional Lyme treatment at this time.

Just found out at hubby's last LLMD appointment that the Alinia which he is taking for Babs is actually Flagyl plus one other ingredient. Knew it was an antiparasitic, but had no idea it had Flagyl in it. So maybe the Tindamax will help you. The Alinia is definitely working on hubby's Babs.

Bea Seibert

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kylasrain
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Oh God bless you, how awful! Hang in there! [group hug]

--------------------
http://kylahikeson.blogspot.com

Posts: 97 | From CA | Registered: May 2007  |  IP: Logged | Report this post to a Moderator
canbravelyme
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Yep, this has almost happened to me.

Prior to any treatment, my voice warbled, then sounded like Mr. Roboto, and then would start off ok, go down to a whisper, and then trail off.

Then it became easier to not speak than speak.

I was told by my doctor at the time that this was due to inflammation of the language centre (in my brain).

It went away with abx. Then again, other symptoms have come and gone. I had another episode when I pushed my physical limits about 2 years ago.

Then I went onto be a mess.

Now I'm getting well, thanks to Dr. S. in CA. Thank you Dr. S.!!!

Best wishes, Lymelady, and to all Lyme sufferers,

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.

Posts: 1494 | From Getting there... | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
lymeladyinNY
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Yeah, I'm sure I have bart bothering me. My lower legs and feet hurt like a toothache.

I can talk again today but my throat is really sore from trying to talk through the hoarseness yesterday.

Wonder what will be next. [Roll Eyes]

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I want to be free

Posts: 1170 | From Endicott, NY | Registered: Sep 2006  |  IP: Logged | Report this post to a Moderator
Boomerang
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Oh, lymelady...that sounds just horrible. Glad to hear you are doing a bit better now.
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jblral
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I was just talking to someone today who said early in her Lyme experience, she had vocal chord paralysis. I gather it has improved with Lyme treatment.
Posts: 991 | From California | Registered: Feb 2006  |  IP: Logged | Report this post to a Moderator
lymeladyinNY
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Oh, wow, Kayas mom. I'm so terribly sorry to learn of your daughter's plight. I truly hope she is able to speak again, and soon. [Frown]

I am able to talk again as I write this, but my throat is extremely sore.

Since I started 750 mg of ceftin, the electric headache has disappeared and my voice has returned.

Too bad I feel so sick now that yesterday I sobbed with pain and misery.

It's so upsetting what this disease is doing to young people. I really pray your daughter gets through this all right.

- Lymelady

--------------------
I want to be free

Posts: 1170 | From Endicott, NY | Registered: Sep 2006  |  IP: Logged | Report this post to a Moderator
LymeMECFSMCS
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I am posting this for my friend Sharon.

********

Feel free to post, forward, etc.
Tick-Borne Illness: Voiceless since Nov. 07 and neck rash (ECM?) since July 07. Need help.
Hello. I'm not able to access websites because they make my computer crash, but I've asked a friend to post this for me.

I was diagnosed with Lyme after a tick bite and rash on the nape of my neck in July 2007. The first clue was joint pain, and that led to discovering/remembering the bite and rash, and then I learned all sorts of other symptoms I was having were classic Lyme. I 'm allergic to tetracycline so I went on Amoxicillin, my symptoms got worse, then they got better, and I seemed to be symptom-free except the persistent EM, which I still have, over a year later.

After 2-3 months on Amoxicillin we discovered it was making me insane (rageful, suicidal, etc.), so I switched to Cefuroxime, which caused no noticable side effects. Eventually I switched to a (by reputation) LLMD, who doubled my dose of Cef, started me on monthly week-long pulses of flagyl. All my tests for everything came back negative, FYI, however I was on antibiotics already and had started treatment within 2-3 weeks of the tick bite, so....

Anyway, my symptoms got worse and changed, particularly during the flagyl pulses, and then I was put on rifampin, which made me sicker than I've ever been in my life. Every hour was more horrifying, and I was convinced it was toxifying my liver. After a week, I went off it, and right at that time I lost the ability to speak, as well as developing, in the aftermath, symptoms including such severe muscle pain and weakness that I was often partially paralyzed (mostly my legs, but sometimes arms or neck, etc.), auditory hallucinations (hearing music), etc. Indeed, I was correct that my liver was suffering, as my liver enzymes went up and stayed elevated (but vacillating) for many months.

To make a long story short, a neurologist found nothing wrong except that clinically, I had wakeness, paralysis, aphasia, hyperreflexia, etc., but MRIs of brain normal and spinal cord mostly normal (some bulging cervical disks). Various other doctors, mostly neurologists, refused to see me, including an LLMD in CT who was worrried that I was so sick that if something should happen to me, I would be too far away. The fact that I have a PCP here didn't allay his fears.

Unfortunately, I have other, pre-existing chronic illnesses/disabilities, so I think it's confusing and overwhelming my docs to try to sort this stuff out, but I have never been as sick as I've been since that damn tick last summer.

My LLMD decided I was nuts because of the weirdness of the voice thing and the fact that tests were negative, therefore that there was no proof I still had Lyme, and told me to go off all antibiotics. That was in Feb.

Since the Lyme I've become a full-time wheelchair user and most of the time unable to speak. No more hallucinations and paralysis is very rare, but I cannot bathe myself, brush my teeth, etc. I have too many other symptoms to go into. My main question is about the voice. Usually my voice "disappears" while I sleep, so that I awake unable to talk, and then it usually (but not always) returns at some poitn before I go to sleep (it starts to come back, and I'm hoarse and croaky, and then boom! Totally normal. Next day, can't make a peep again. It often also goes away if I take a nap during the day.) So, this has been 9 months of this.

I would DESPERATELY like to speak to ANYONE WHO HAS LOST THEIR VOICE due to tick-borne disease. If this is you, can you answer any of these questions?

What is the pattern of your speech issues?
Do any of your doctors recognize it as tick-related?
Have you been dx with Lyme, babesia, bartonella, and/or any other illness?
Have you had any effective treatment, and if so, what?

Have any of your tests been positive? Or, if they've been treating based on clinical evidence, what clinical evidence, and how can I get my doctors to believe I'm worth treating?

Please email me at swachsler at aol.com.
I can also speak via TTY or relay if you prefer (it's easier for me because sitting at the computer wears me out) once we make contact. But if you prefer email, that's fine, too.
THanks so much for any help!
-Sharon

Posts: 929 | From Massachusetts | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
   

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