Anyone Else with Speech/Mouth Issues?

I know there is a whole shopping list of symptoms for Lyme but I randomly see people talking about difficulty with their speech and It would be very reassuring to hear that i am not the only one that is experiencing this.

I am 34 and was diagnosed with Lyme by an LLMD in late November of 2014 after presenting symptoms for almost 2 years and getting a CDC positive IGM and partial positive IGG Western Blot , completed oral antibiotic treatment roughly 1.5 months ago and have been on herbal detox and vitamins since.

All of my symptoms have subsided except for my speech issues. I feel that my tongue is slower and that I am having a harder time pronouncing some words. It's almost like I know what i want to say but it's harder to say it and sometimes the words will get a little jumbled together. It's like my mouth is a little lazy. It gets better and worst throughout the day or week. Sometimes it feels like my tongue is burnt or my lips are swollen etc... Also, the glands in my throat are swollen and my neck is stiff and painful on one side. it's important to mention that the speech issue is very subtle and that nobody around me, wife, friends claim to notice any difference in my speech however, I am noticing that it's just more difficult to talk for me. I have to really push on certain words to get them out properly.

I am really worried that this is ALS. I feel that the speech issue is progressing and it's also a symptom that I didn't have from the very beginning.

Should I go get checked out by a doctor for ALS? I have been to the neuro twice before but at the time did not have speech / mouth issues. Also, it's been more than a year since i saw the neuro or got a brain MRI which came back clean.

Please help me! I know I'm detoxing but this is the ONLY symptom I really feel and it's really scaring me.

Has anyone else experienced anything like this?

Happy,

Do you have Bart in addition to lyme? I ask this because most of my tongue (I have burning tingling , sometimes thick slurring tongue) and swollen glands in throat as well as stiff throat. My stiffness also goes up into my face. My symptoms were mild until I started NAC about two weeks ago and my symptom got intense again. NAC is a biofilm buster and I feel like it's breaking up some stuff . I believe my oral, throat issues are mostly due to Bart.

Hello! Because of this post I joined HealingWell. Thank God I found like company!

Long story short, 15 yrs undiagnosed Lyme. LLMD said I was surpressing it very well until my Epstein Barr reactivated 2 yrs ago.

Most of my symptoms are mouth/throat. Be carefull what you wish for, but sometimes I just long for good old fatigue and joint pain of lyme. I wouldn't wish this set of symptoms on my worst enemy.

Burning mouth, feel like someone pulling my tongue down my throat, throat spasms and stiffness which radiate into my ear, roof of mouth. I feel like I am teething like a baby.

I am on an antiobiotic break now b/c I have to take a Bart test which requires you to be off them. I already have a blood test which shows bart in system. This new test will show whether its past or active.

I am so depressed. Living like this for two yrs. I refuse all meds. Klonopin made me a zombie and didn't touch the pain. Same with neurontin.

Please tell me some of you are getting better I cant wait to be put back on abx meds. Although I had this one year ago and it came back recently while I was on Valcyte for my ebv, Wondering if that drug - super toxic - did something to my throat.

One other member said that it felt like when they were on a ventilator - YES YES YES that's exactly what it feels like. When I was on a ventilator for open heart surgery (to correct a valve which now we know was from lyme deterioration). Thats exactly what my throat feels like! Like I have constant strep, tonsillities, something in there irritating it.

Help, someone please give me some hope! Going to see neurosurgeon in two weeks but what can he do? Its the Lyme, Nothing he can do, right?
L

At the moment, my speech is acting up. I keep making mistakes and jumbling up words and mixing two words together. Sometimes when I'm thinking of what to say while speaking, I get a mind block and I make a lisp sort of sound.

Hi Pyrs2!
Welcome to our community!! I'm so glad you joined us!!

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.

I see that you are already seeing a LLMD, that's sure good!!

I healed from a 40 yr infection with just herbs and since I've been on here for the last 7 yrs, I've watch quite a few people move on and heal - so yes!! There are some good stories to be told!

and I would agree - if it's Lyme, the Neurosurgeon can't help, unless he is Lyme literate - then maybe.

Thank you all for your replies!

As for fungal/yeast, I thought of that and thrush too (same things?) but drs said no b/c no white coated tongue. Is there something over the counter I can try just to see?

When I do get the jabbing intense pains in tonsil area and ear they are one sided mainly left. However the choking, strangling tongue pulling sensation and spasms and burning and teething are all over. So its a bit of both. Yes, I went to two ENTs thinking its oral cancer and feeling for glands/lumps all the time. I am even having an endoscopy next week just to make sure not the esophagus. But this feels so diff't than heartburn.

I am sorry you are all suffering, but glimmer of hope - after 40 yrs recovery with herbs!? Amazing. I must start turning from Western meds a little and branch out. My first bout of this (not as severe though) a yr ago was indeed helped by accupuncture.

I heard that Lyme attacks the weakest links in you. So I already told you I had mitral valve prolapse since I was a teen (now 46)- so it attacked my valve which degenerated rapidly 8 years ago - two months after running a marathon with no issues. During that open heart surgery (which was a CAKE WALK compared to lyme!) they pulled out the ventilator very quick b/c I was waking up and breathing on my own. That quick removal damaged my vocal chords and I had to have yet another surgery 3 months later -- all healed perfectly well but I find it soooo interesting that Lyme is now attacking that as well. Even though I never had any symptoms for the past 8 years, its as if the lyme knew that i had a prior problem there in my throat. Or maybe it really is nerve damage from the ventilator.

So thats what I want to neurosurgeon to take a look at. He is well versed in glossophalyngeal neuralgia, which this sounds like. I dont know how well versed in Lyme. Its worth a shot. I honestly feel that this is also somehow vagus nerve related b/c in true Lyme fashion of wandering symptoms, I had three months of weird waking up episodes where I felt that I was powering down in my sleep and not getting blood flow to my heart, head, etc. SCARY stuff. All testing was normal, but I have had heart palps all my life - this was totally different. There is some nerve dysfunction going on. I would say 90% of my symptoms are neuro based, but after going undiagnosed 15 yrs, thats to be expected so late...

I have 3 kids, two of whom are Kindergarten age and I am so not the mommy that they need right now. From the neck down I generally feel okay- I just want to lob my head off b/c they are so trecherous. The symptoms make me so snappy. I just can't believe I have been living like this for two years - a year ago I kept saying wow next summer this will all be over and it isnt! Its like I am living groundhogs day in a bad bad way.