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Tongue fasciculations - slowly going numb - anyone else have this symptom? Help!

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Posted 6/15/2012 3:18 AM (GMT 0)
Hello,

I have recently been clinically diagnosed with Lymes and have taken a few different antibiotics. I have spasms everywhere, shaky muscles when I try to use them. I'm still strong but they shake, like they're electrically shorting out when I use them. My tongue is also crawling and is going numb. I can physically see it move in the mirror. It used to go numb and come back, but now it's staying numb. My right hand is getting slower as well as my right foot. Is any one else having symptoms like this? I think my lyme doc. want's me to try IV antibiotics. I'm nervous about trying this but I"m about out of options. Has anyone gone through this? He says I"m unique. I'm wondering if I really have lymes because I had a couple of indif... bands on my western blot. Any advice or similar stories would be much appreciated.

Thank you,

Steve
Posted 6/15/2012 4:06 AM (GMT 0)
Hey Steve,

I had crazy twitches like you describe everywhere! I still have them in my legs actually. I would get them on my tongue too- definitely a weird feeling! And with all of my twitches you could see the muscle moving- they would actually move my thumb sometimes, if they were in the muscles in my hand.

Anyway, with anything like this ALWAYS make sure a doctor is aware of what is going on, just in case. However, what you are describing is part and parcel for Lyme, unfortunately. Talk it out with your doctor, and pick a treatment that he thinks will work AND you are comfortable with.

I haven't had IV because of the difficulty in getting it and the expense involved, but I know people for whom it has been a lifesaver. But the choice is very complicated, because it isn't just about the medicine- you have to be able to get an IV
Posted 6/15/2012 1:22 PM (GMT 0)
Zeusy,

Thank you for the reply.  I have the twitches everywhere also.  The thing that scares me the most is my tongue crawling and being numb.  I lead music in a praise and worship band in a church of 1,000 and I'm living my dream and don't want to quit.  Talking is pretty important too... lol.  I have talked to my normal doc. and have seen a neuro 3 different times and they said they don't know what's wrong and to come back in a year.  It's been a little over a year and I do have another apt.  with my neuro.  I'm really just trying to decide if it's lymes or not.  I have taken several different antibiotics and none seem to help.  My next step is IV antibiotics.  It just scares me thinking of having a pick line in my arm all of the time, taking care if it, etc.  But if I have to , I have to.  So Zeusy, have you ever had tongue twitches or numbness in your tongue?

Posted 6/16/2012 3:13 AM (GMT 0)
Hey Steve. Yep, as I said, I got them in my tongue. My tongue never went numb, but I got twitches in it.
Posted 6/16/2012 4:01 AM (GMT 0)
Not to jump to alarming conclusions, but, is there any swelling your tongue as well? With drugs, allergic reactions are always a possibility. The entire time I was on ceftin I had a mild allergic reaction - every time I'd go off and then back on I'd have some swelling in my tongue.

Are you detoxing? A lot of times your body's reaction to killing off the bacteria (known as a herxheimer reaction or "herx") causes the worst of your symptoms (not necessarily the infection itself). Unfortunately most doctors don't really address the importance of detoxing and focus more on what their job is - getting the infection under control. If you haven't already, I'd suggest looking through the "New to Lyme" thread - there's a section on detoxing there that's really useful, as well as a lot of other great information as well.

In the meantime, supplementing with magnesium may help with the twitching - although I'd probably talk to your doctor first - magnesium is one of those things that's great for us but may also be great for the bacteria to help them survive.
Posted 6/16/2012 1:31 PM (GMT 0)
Yep, the tip of my tongue has been numb to varying degrees for almost 7 years now.
Posted 6/18/2012 6:01 AM (GMT 0)
Hi, concerned tongue twitchers.

You are not that unusual. My tongue symptoms about drove me nuts. I twitched from head to toe and tongue too. The cause is the cranial nerve involvement. Lyme favors the cranial nerves. Look this up...your doctor could read about this. My LLMD said I HAD to do IV's because my brain was clearly affected and infected. When it interferes with the muscles of your face and head...as in classic Bell's Palsy, this is classic Lyme and associated illnesses. The IV's are spooky, but manageable. I did the pic line. I really don't know if I would have survived without IV treatment...and I would never say do it lightly...or without necessity. It is your life. If anything else would have corrected the severe neurological infection I had...I would have welcomed it. There is some evidence that IV allicin (the active chemical in raw garlic) would knock it out...that is readily available in China, but not here.

After IV's I saw a LLMD who immediately saw a residual tremor in my tongue. He said I obviously sustained cranial nerve damage in nerve #12 besides the Trigeminal nerves. To this day I have trouble swallowing pills. These tongue symptoms are nothing to fool with. They underscore how aggressive the Lyme infection is.

I wish you well. I see no option but to get to a LLMD for guidance. If they don't see this as familiar...they are not an LLMD.
Posted 6/19/2012 2:49 AM (GMT 0)
Lyme Warrior Lady,

I really appreciate your post. I think I'm going to go ahead with the IV antibiotics. I think I'm just afraid I don't really have lymes but like you said, it's my life so it won't hurt me to try them (at least I hope it won't). I do have an LLMD here in Columbia Missouri and he has recommended that I do the IV antibiotics. Thank you again so much.

Steve
Posted 4/10/2014 1:41 AM (GMT 0)
Oh there are other people with tongue twitching. I have it, as well as everywhere else. I do not have a diagnoses yet, but think lyme is a big possibility for me as the neuro/rheumy haven't figured out what's going on.
Did any of you have pain in your teeth as well?
I know this us an old thread, but thought I'd check.
Thank you. :)
Posted 4/10/2014 1:59 AM (GMT 0)
I also have cranial nerve involvement. My tongue gets like tremor waves coming down it. It's more severe than just a twitch. I'm not sure how to describe it. My bottom lip also goes severely numb. I have gotten a shooting pain in my tooth on occasion, and my eye has twitched nonstop for months...among other crazy symptoms.
Posted 4/10/2014 2:15 AM (GMT 0)
Delmar,

I don't have the twitching tongue but I do have teeth pain. I also have issues with chewing the insides of my jaws. There is a white line of skin on the inside of my jaws from chewing them now (both sides). I don't know how to stop doing this either.
Posted 4/10/2014 2:28 AM (GMT 0)
Yes, I'm a tongue twitcher, but my tongue never went completely numb. That's a little scary, isn't it? Sorry you have to deal with it. I've had other areas of numbness, especially fingers and thumbs, and I have a lot of twitches. I've given up on that stuff and the slurred speech (I hate the latter), but I know it can be really tough.

And teeth pain, and trouble chewing SUCKS! I do have those problems.

Again, sorry.

Margaret
Posted 4/10/2014 3:37 AM (GMT 0)
SteveM, your in good company here, if you can't tell already!! about 60% of my symptoms are from my neck up. Tingling tongue, tingling "explosions" across my face, twitching, floaters in my eyes, I also see LLMD in Columbia Mo. Have you tried all the abx he suggests? I will tell you that my neuro symptoms really improved after taking Flaygl for months. It is very strong and I could only take small amts for quite sometime. Hang in there whatever you decide! :-)
Posted 4/10/2014 6:31 AM (GMT 0)
I can't controll my tongue either - lol, that came out the wrong way...

very annoying, can go on for hours and hours. It hasn't gone numb though, my face regularly does, but not my tongue.

In fact, there are days I can't controll my tongue. I'm going through some major herxing now (increased my cowden with 1 (!!) drop of Samento, and my speech is so bad since. It feels like I can't form my words because of my tongue not cooperating.

Posted 1/25/2015 6:56 PM (GMT 0)
My tongue is twitchy as well, very annoying and a tad scary
Posted 1/25/2015 10:43 PM (GMT 0)
I'm still having it! I had it for about 2yrs now, and gotten 'used' to it, in the sense that it doesn't scare me.
Are you taking magnesium Mikes44? Some are really helped with twitching in general when taking magnesium.

Marie
Posted 1/30/2015 4:30 AM (GMT 0)
Yes Marie I take a lot of magnesium. I think anxiety is a major contributor to my twitchy tonge.
Posted 8/10/2016 4:36 PM (GMT 0)
Hey all,

I know it's been a year and a half, but I'm just now finding this thread and was wondering how you all are doing with your symptoms? Were you able to overcome the tongue twitching / numbness, and if so do you have any tips on what helped?

My own situation... I was diagnosed with lyme 3 years ago, was bit and got the bullseye rash 9 years ago. My tongue constantly tremors (especially when I stick it out), so do my eyelids when closed, and I have tremors / twitches in my hands. Recently I started getting a burning sensation in my tongue and jaw muscles. It's all scary, because even though I believe it's lyme, you also worry about things like Parkinson's and ALS.

Anyway, let me know how you all are doing, it always feels good to know you're not alone in this battle.

Justin
Posted 8/10/2016 4:58 PM (GMT 0)
Hi Justin, welcome to our community!


While I don't have the tongue fasciculations - I have had them just about everywhere else in my body.


Have you been treating Lyme disease for the past 3 years since diagnosis?

Because you are new to this forum, it would be helpful for you to read through the thread at the top of the page titled: "New to Lyme?..Start Here!" It's packed full of useful information.
Posted 8/10/2016 5:11 PM (GMT 0)
Hey Girlie,

Yes I was first treated by an LLMD in New Jersey, then recently I started getting treated by supposedly one of the top LLMD's in the country in DC (the one in the film.) That's when it gets scary, when you're doing the ABX, supplements, eating right, and exercising a lot and your nervous system is still deteriorating...

Thanks,
Justin
Posted 8/10/2016 10:21 PM (GMT 0)
Yep ...chinese cats claw ,high dose fats ,iv phosphitadlycholine ,iv magnisum and rocephin calmed them down a bit ..trying lions mane b12 shots ,lots of fish oil ,ozone and rife for bart ...i think its bart ,myco in the nerves ...could be the ketes too they are in my cells ...bee venom has helped some too...i did get darkfield test positive for toxo...that may be part n parcel..you are not alone ..try it all..iv silver ,h202
a friend was given als dx had foot drop did 2 yrs of bvt ,double h202 3x a week and 100 dives hbot ..she is working again ..she did rife and supplement ivs .
iv curcumin helped too
Posted 8/12/2016 4:12 AM (GMT 0)
Hello,
Just some background- I've never been officially diagnosed with lyme but been struggling with many symptoms for several years and have started to self treat with chinese herbs recommended on the goodbyelyme site... I don't live in a place where any lyme savvy doctors are near enough, or even where lyme is recognized as being a problem by any GP around here (especially if you have not had the official tick with bullseye rash) though I live in a very tick/mosquito-y place.
I have everything Justin posted - the newest scariest over the last few months are the bizarre tongue tremors, but for years so do my eyelids when closed, and I have visible twitching spells that randomly come and go pretty much all through my body, though it seems like different parts of the body are affected different months..... sometimes my feet or hands, sometimes my back or legs...for a little while recently I could not smile without the left side of my face starting to twitch which really freaked me out, thankfully it seems like that has passed for the moment and I pray it does not return......also have noticed extreme eye floaters, headaches, deep fatigue, and also for a long time I feel like my entire body is vibrating/buzzing/burning on the inside it's a horrible sensation I've had to learn to live with and not talk about as nobody around me can relate.
The neuro symptoms are pretty terrifying, I feel for everyone out there experiencing it.
Currently taking a round of Andrographis (supposed to kill spirochetes) and Terminalia Chebula (aka Haritaki) (supposed to break down the biofilm the spirochetes use to protect themselves) The last time I did a month of these herbs I felt much worse initially, which made me think it really is lyme. Also taking vitamins - sublingual vitamin b12, magnesium, vitamin C and D, etc, and have cut out almost all sugar.
Anyway, glad to find this board, love and healing vibes to everyone dealing with this stuff.. it's no picnic.
Posted 8/12/2016 4:22 AM (GMT 0)

jtoth55 said...
Hey Girlie,

Yes I was first treated by an LLMD in New Jersey, then recently I started getting treated by supposedly one of the top LLMD's in the country in DC (the one in the film.) That's when it gets scary, when you're doing the ABX, supplements, eating right, and exercising a lot and your nervous system is still deteriorating...

Thanks,
Justin

So, you're seeing Dr. J. I'm assuming. What does he say about your continuing deterioration?
Posted 8/12/2016 4:28 AM (GMT 0)
Welcome, freakingout - sorry you are feeling so horrible...but I'm glad you found us here.

This is an amazing forum - great people - lots of knowledge and support.
I, too was freaking out when I first came here.
and now...two years later...I'm only freaking out once in a while...instead of every. single. day.

I have the nervous system symptoms - buzzing, vibrating, burning. (and also internal tremors...which are distinctly different from the buzzing and vibrating)

Would you mind sharing what country you are from? (It's okay if you don't want to)
It would help us...help you...if we knew the general area.

Because you are new here, it would be helpful for you to read through the thread at the top of the page titled: "New to Lyme?..Start here!" It's packed full of good information.

Also, wanted to ask - are you doing a lot of detoxing?
Posted 8/12/2016 1:53 PM (GMT 0)
Justin - I have slight twitch in tongue when I stick it out and my eyelids twitch a lot when I close them. I also jump as if someone just threw a ball at my face when I close my eyes (not like the jump when you're falling asleep). I think this has to do with our nervous system and will hopefully get better over time. But from what I know, it takes awhile to heal the nervous system.

It's really hard not to worry about ALS, parkinsons or MS. However, since there is no known cause of those diseases it could actually be Lyme (or other infection) in many of those cases. Also, making sure our gut health is as good as it possibly can be is important. Terry Wahls (who has reversed her MS with diet) recently said she now believes her turnaround had to do primarily with gut health/increasing good bacteria in the gut. A large portion of our immune system is in our gut.

When I first got sick, doctors jumped right to MS. I immediately started Terry Wahl diet and found I did get a lot better. After I found out it was Lyme, I kinda fell off the diet. Now I am back to trying to implement it again, or at least most of it. It is empowering to know that the one thing I can actually control is what I put in my body. Especially since my body itself feels so out of control with the twitching, numbness, vibrations, etc.
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