Nobody Else with Speech / Tongue / Mouth symptoms?

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Happy33
Regular Member


Date Joined Dec 2014
Total Posts : 35
   Posted 4/13/2015 3:57 PM (GMT -6)   
Lyme is not shy in presenting a laundry list of symptoms and I have had quite a bit of them but when I post about mouth related and speech / tongue related symptoms I don't seem to get many people that identify and experience similar symptoms.

Is this not common? It's on the list of known symptoms but I really want to gauge if other people are experiencing this or not.

Please share if you've had any mouth/tongue/speech related symptoms. I am panicking a bit over here.

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 4/13/2015 4:04 PM (GMT -6)   
Please don't panic! What kind of symptoms are you experiencing? I've had almost all of the symptoms listed in the "Master Symptom List" for Lyme in our "New to Lyme?" thread, so I've likely had a lot of the same symptoms.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
Back in treatment for new Lyme case 8/2014
*I can usually post a link to any info that I post. Wish to see a link? Please just ask!

Dannarahn
Regular Member


Date Joined Mar 2014
Total Posts : 218
   Posted 4/13/2015 4:21 PM (GMT -6)   
I have had speech problems and was wondering the same thing. Some days others can't understand a thing I say.

When I saw the first Lyme doc last year, and i told him about it, he said the same thing as my second Lyme doc. He said "I don't like that". Apparently it's when the spirochetes go "deep". One doc said "I can't bring it back, but I'll keep it from getting worse". PS it improved after 6 months of rocephin. But, long story short, I had to pull the PICC and it really got worse after a few weeks while I was gearing up for another PICC. I am back on rocephin and hoping I will sound like myself again in the fall. I feel like my tongue is too big for my mouth, and my muscles in my mouth aren't really working too well (like the rest of my body).

It's definitely worse at night, and considerably worse if i eat gluten. Between that and the severe balance issues (and plenty more) people think I am drunk all time!

I would welcome other people's input. Not that I wish this bizarre symptom on anyone, but it's comforting to know I am not alone with this problem.

Hang in there because it can improve. It's a long haul... :-)
Lyme, Babs and Bart dx Feb 2014; tick bite in 1991 and again 2012; Lyme for over 20+ years. Mostly neuro lyme

Happy33
Regular Member


Date Joined Dec 2014
Total Posts : 35
   Posted 4/13/2015 4:31 PM (GMT -6)   
In and off sensations that my tongue is eithe swollen or irritated at the base. It affects my speech a little. People say they can't hear it but I can tell that certain sounds like W or L or S are a little off at times. It's also very sporadic...changes in a matter of minutes. My mouth in general feels strange, tongue feels like I burnt it in certain spots and it goes away and comes back also. Yesterday I was over producing saliva and felt like my jaw was fatigued and sore near my ear. Mouth felt fatigued. Today just my left side is a little swollen feeling from my neck to my throat and tongue and even lips but on the left only...this is accompanied with left shoulder, arm and neck pain.

Dannarahn
Regular Member


Date Joined Mar 2014
Total Posts : 218
   Posted 4/13/2015 4:43 PM (GMT -6)   
Happy33, you had the "extra saliva" too? I get that and I sort of feel like I am drooling a bit, but no one else notices (I've asked people I know well to tell me if they notice a symptom with me so I can tell when it's improving). At least 4 people said they understood me better before i went off meds.

May I ask what meds you are on?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33965
   Posted 4/13/2015 4:50 PM (GMT -6)   
I have a tingly tongue sometimes...and sometimes pronouncing words wrong...not sure if that's my mouth/tongue...or my brain.

I think it will go away with treatment...
Symptoms started Sept, 2013 (maybe sooner?)
Buhner's protocol May 15/14 to July24/14
Igenex positive July 3, 2014; Doxy: July 4-Aug.24/14
Zithro July26-Aug.24/14
Amox 1000mg x3 + Probencid started Aug. 29/14; added biaxin 500X2 Sept. 26/14
Disc. amox and added Ceftin Nov. 20th. End of Jan/15 pulsing Tindamax ; disc biaxin
Buhners bart herbs started Dec/14

MarieLS
Forum Moderator


Date Joined Dec 2012
Total Posts : 2690
   Posted 4/13/2015 5:51 PM (GMT -6)   
It often feels difficult to move my tongue the way I want it to, as if it is stiff and swollen. At those times I find it difficult to speak. It twitches too, and I have what they call a geographical tongue.
I have the extra saliva too, or is it rather having difficulties to keep a normal quantity of saliva in my mouth?
Husband looks at me as if I'm nuts when I drool when speaking (this is not constant LOL, I don't leave a trace).
Moderator, Lyme Forum

Borrelia/Bartonella/Yersinia/Chlamydia Pn.

Started getting sick about 20yrs ago, diagnosed 2,5yrs ago.

Started treatment August 2012: 15 months of abx, followed by a modified Cowden Protocol since December 2013. On LDN for pain.

~The wound is the place where the Light enters you~

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 4/13/2015 6:07 PM (GMT -6)   
I figured as soon as you posted the symptoms that you were having that we would get a conversation going!

My kids used to tease me that I had my own language and that it was too bad that no one else could interpret it! LOL! We Also had the game "Guess what word Mom is trying to find!"

A lot of what you described, Happy, is due to nerve issues, and so it's explained by Neuro Lyme and/or Bartonella - which will all go away as you heal.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
Back in treatment for new Lyme case 8/2014
*I can usually post a link to any info that I post. Wish to see a link? Please just ask!

Louise74
Veteran Member


Date Joined Mar 2014
Total Posts : 1035
   Posted 4/13/2015 6:22 PM (GMT -6)   
I was diagnosed with burning mouth syndrome and another similar pain condition that affects the mouth nerves. I was also diagnosed with severe tmj and they wanted to break my jaw. Nice huh. I have lots of issues with my throat, mouth and jaw

SailorKim
Regular Member


Date Joined Jan 2015
Total Posts : 170
   Posted 4/13/2015 7:05 PM (GMT -6)   
I have this as well. Sometimes it feels like my throat gets involved with all the fun and it's like I get tired talking, if that makes sense. It isn't always, but if I really get to yacking, it seems to really be more pronounced.
I try every day, some days are harder than others, but I try.

MTHFR gene mutation, mycoplasma, EBV, chronic Lyme

Kitkate
Regular Member


Date Joined Jun 2014
Total Posts : 148
   Posted 4/13/2015 8:07 PM (GMT -6)   
I have the tongue/mouth issues (tingling, burning, swollen and sluggish tongue) as well as throat pain/irritation, swallowing difficulties. I was doing better with these symptoms until work stress came into play in the last couple of weeks. They are very annoying and can be scary.

Dannarahn
Regular Member


Date Joined Mar 2014
Total Posts : 218
   Posted 4/13/2015 8:39 PM (GMT -6)   
Traveler
You mentioned Bart - is this a Bart or lyme problem? I ask because I am not on a Bart med now, only rocephin and tomorrow I add Malarone. Next week I add Zithromax.

dorifish1
Regular Member


Date Joined Mar 2015
Total Posts : 38
   Posted 4/13/2015 9:03 PM (GMT -6)   
my tongue has been so thick since getting sick, and a few years before i knew what was wrong, i was producing too much saliva on one side of my mouth, and it happened at work often, which was in 2007

which was embarrassing, but had no idea what was causing this

sorry you all are going through this, thanks for sharing ,

Post Edited (dorifish1) : 4/13/2015 8:19:46 PM (GMT-6)


Happy33
Regular Member


Date Joined Dec 2014
Total Posts : 35
   Posted 4/13/2015 9:08 PM (GMT -6)   
Thank you everyone on this thread. I am always overwhelmed by how kind, caring and engaged everyone is on this site.

Traveler, you are fantastic and always know what to say to ease my anxiety and fear.

I am moving to a fully herbal protocol after 4 months of standard antibiotics and a few weeks of no treatment at all. I am going to kick this lyme and feel 100% again. I'm determined and focused.

I will probably be back for more reassurance as symptoms scare me back to thinking this could all be part of a scary 3 letter acronym disease but for now...wish me luck!!

Thanks again everyone!

lymegreenson
New Member


Date Joined Feb 2015
Total Posts : 17
   Posted 4/13/2015 10:35 PM (GMT -6)   
My son had this. Sometimes he would just let his tongue hang out and couldn't speak. Other times he would say he could not swallow pills. His tongue sometimes looked fat or swollen. It was a source of great anxiety for him (and me).

I do wish you luck Happy33! My son hasn't had those mouth problems in awhile and we don't miss them. Hope yours go aways soon too!

FlossieUK
Regular Member


Date Joined Oct 2014
Total Posts : 330
   Posted 4/14/2015 1:47 AM (GMT -6)   
Strangely enough, I have had a sensation like I've slightly burnt my tongue just near the tip, for the last couple of weeks . . . so this could be lyme related? Or Bart? I've recently started trying to address poss Bart with rifampicin and minocycline. Maybe this has brought out a new symptom?? Interesting to know that others have experienced similar.

Hope your mouth/tongue issues resolve for you soon happyjo.
Igenex, August 2013: IGM - 18+ 23-25+ 30+ 31 IND 34+ 39+ 41+++ 58+ 83-93 IND. IGG 39 IND 41 ++
Igenex multiplex PCR text (detects DNA sequences):
Genomic B Burgdofori NEGATIVE Plasmid B Burgdofori POSITIVE
Invita lab, Germany: "Morphologically positive reaction to borrelia garinii p41 antigen (internal fragment, recombinant) and positive reaction to borrelia burgdofori senso stricto full antigen, indicating an active lyme borreliosis"

ValentineBaby
Regular Member


Date Joined Dec 2013
Total Posts : 101
   Posted 4/14/2015 7:56 AM (GMT -6)   
I often get the feeling that my tongue is swollen. Because of horrendous foot, ankle and shin pain and night sweats I am now also on Zithromax. Began Friday evening and feel like I got hit by a truck today. More pain in feet, shins, hands, ribs and back. Also have nausea and dry heaves. This sucks in plain English.

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 4/14/2015 10:41 AM (GMT -6)   
Dannarahn said...
Traveler
You mentioned Bart - is this a Bart or lyme problem? I ask because I am not on a Bart med now, only rocephin and tomorrow I add Malarone. Next week I add Zithromax.


It can be from Bart or Bart can have an influence in increasing the intensity for some. When Bartonella and Lyme combine, they make the Neuro symptoms a lot worse for many of us.

But - Neuro Lyme can really pack a wallop too!! I just had Lyme this last time and I had to really wonder for a while if I had Bart also - but as I treated my Lyme, the symptoms all calmed down- I didn't have to treat for Bart, so I know that it was just Neuro Lyme.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
Back in treatment for new Lyme case 8/2014
*I can usually post a link to any info that I post. Wish to see a link? Please just ask!

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 4/14/2015 10:45 AM (GMT -6)   
Happy33 said...
Thank you everyone on this thread. I am always overwhelmed by how kind, caring and engaged everyone is on this site.

Traveler, you are fantastic and always know what to say to ease my anxiety and fear.

I am moving to a fully herbal protocol after 4 months of standard antibiotics and a few weeks of no treatment at all. I am going to kick this lyme and feel 100% again. I'm determined and focused.

I will probably be back for more reassurance as symptoms scare me back to thinking this could all be part of a scary 3 letter acronym disease but for now...wish me luck!!

Thanks again everyone!


Yeah, I love this forum!!

And thank you for your kind words - I'm glad that what I went through helps others to understand!!! It gives something back to me, as if I didn't go through it just to see if I could! LOL!!

And do please come back any time you have questions or concerns!! We are all in this together!!

Go get 'em!! Stay determine and focused on your healing!!! yeah
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
Back in treatment for new Lyme case 8/2014
*I can usually post a link to any info that I post. Wish to see a link? Please just ask!

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 4/14/2015 10:48 AM (GMT -6)   
ValentineBaby said...
I often get the feeling that my tongue is swollen. Because of horrendous foot, ankle and shin pain and night sweats I am now also on Zithromax. Began Friday evening and feel like I got hit by a truck today. More pain in feet, shins, hands, ribs and back. Also have nausea and dry heaves. This sucks in plain English.


Agreed, ValentineBaby! This just sucks!! It sounds like you are in a herx, so be sure to increase what you are doing for detoxing. You can use ginger tea for nausea and to calm the stomach (once you feel like you can hold it down) - and don't forget that if it gets too rough, either lower your dosage or stop your meds for a day or two to allow your body to catch up to all of those toxins that are being created by the killing of the bacteria!

Best of luck!
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
Back in treatment for new Lyme case 8/2014
*I can usually post a link to any info that I post. Wish to see a link? Please just ask!

adorn
New Member


Date Joined Jun 2018
Total Posts : 8
   Posted 6/14/2018 11:03 AM (GMT -6)   
My husband was diagnosed with a weak tongue which is causing a slurred speech. This happened overnight but now the dr feels he has ALS. He has severe TMJ which causes pain in his jaw and makes it hard to chew in turn tiring out his jaw.
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