Tonge myoclonus and fasciculation

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OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 563
   Posted 1/22/2018 5:10 PM (GMT -6)   
Hi friends!

I need your help. I am terrified and very afraid.

I have a symptom, which I think is unique and not read in the forum.

In my tongue I have myoclonus and a constant fasciculation at the tip of my tongue. Today another one has appeared in the middle, and if I stimulate my tongue hit it more worms move ... I'm scared, I'm afraid that it will advance like a bulbar ALS and die ...

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 1/22/2018 5:37 PM (GMT -6)   
When I had lyme I had twitches in the weirdest places.

When well, I have had eye twitches, but gosh no other place. With lyme they were all over my body. Absolutely no rhyme or reason.

If you are super concerned, you should call your doc. It is better to call and alleviate your stress. Stressing about it will make your lyme worse!! Trust me, I was so good at getting worse by stressing.

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 337
   Posted 1/22/2018 5:58 PM (GMT -6)   
Twitching has been a major symptom for me. Back when my twitching first started, my tongue was twitching bad. Several times every day for about 5-6 months straight I think. It was very annoying and troubling. I was worried about seizures, ALS, MS etc.

My twitches were on the underside of my tongue. Like near the saliva ducts. Around the same time, my eyelid and face started twitching too. Eventually, the tongue twitching subsided and body twitching and myoclonus ramped up.

Since starting treatment, my twitching has been almost completely erradicated.

I believe twitching is a very common Lyme symptom. My LLMD said it is one of the most common, and something he weighs heavily in clinical diagnosis.

I forget your history. How long have you been treating and what protocol?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32652
   Posted 1/22/2018 6:27 PM (GMT -6)   
OriolCarol said...
Hi friends!

I need your help. I am terrified and very afraid.

I have a symptom, which I think is unique and not read in the forum.

In my tongue I have myoclonus and a constant fasciculation at the tip of my tongue. Today another one has appeared in the middle, and if I stimulate my tongue hit it more worms move ... I'm scared, I'm afraid that it will advance like a bulbar ALS and die ...


I didn't have twitching of the tongue (other areas of my body, I did though) - but I had what looked like worms moving.

I haven't checked lately, though.

Have you discussed this with your LLMD? Try not to worry about it advancing to bulbar ALS, as you are in treatment now.
You don't have problems swallowing, do you? Or speaking?

I would discuss your concerns with your LLMD.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 563
   Posted 1/23/2018 9:46 AM (GMT -6)   
I try not to despair, but it is impossible.

This has gotten worse with the treatment, that's why I'm scared. Theoretically it should stabilize or improve, but not get worse sad

Maybe vitamin B deficiency is related?

Fissures have also appeared in my tongue ....

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 563
   Posted 1/23/2018 11:34 AM (GMT -6)   
But... When i check my vitamin b12 levels, i'm so high... It's a joke sad how is it posible? T'he intervalo reference is between 200-400. I'm on 1000

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 337
   Posted 1/23/2018 1:56 PM (GMT -6)   
I am curious how long you have been treating and what are you trying?

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 563
   Posted 1/23/2018 2:21 PM (GMT -6)   
Hello! I have been with doxycycline and cefuroxime for 20 days, and I did not notice anything ... I kept getting worse, then I did 3 weeks of ceftriaxone and I stopped, because I was very sick, I had two rest and now I have two weeks with 2gr of cefrriaxone, 600mg of rifampin and 100mg of minocycline ... Interestingly this week I lost the sensitivity in the tongue, after a dose of minocycline and now I look at my tongue and I see this ... I have worried a lot, because I do not know if it is the lyme, the nerves irritated by toxins, or a neurotoxicity of cephalosporins ...

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 337
   Posted 1/23/2018 3:13 PM (GMT -6)   
It probably is highly possible that starting strong antibiotics in combination like that is causing dye-off and irritating your nerves and causing twitching.

I so hope you will start to improve and twitching will resolve like it did for me.

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 563
   Posted 1/23/2018 6:41 PM (GMT -6)   
I hope it is a herx.

But I do not understand one thing.

When I started with the antibiotic it got worse in all aspects. Then, when I stopped the antibiotic, that effort did not disappear, that is, it stayed ... Now I go back to the abx and I get worse again ... So we could say that I have been in a herx, approximately a whole month.

I thought of a medication allergy, but I do not think a side effect of ceftriaxone are fasciculations on the tongue hahaha

I thought about the treatment with herbs, but I do not think it has the effect in my case, with all the symptoms I have, imitating symptoms of ALS, MS, arrhythmias etc ... I can't hardly believe that herbs work like abx.

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 563
   Posted 1/26/2018 9:55 AM (GMT -6)   
I attach a picture of my tongue. Here the fasciculation at the tip is not appreciated. But ... do you see this tongue normal? Before, I had it different, much more pink and smooth, now it's like "old" and I have loose papillae, like spun ...

Can vitamin B deficiency cause changes in the tongue?

I attach a photo.

https://imgur.com/a/Jw1HM

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32652
   Posted 1/26/2018 12:53 PM (GMT -6)   
OriolCarol said...
I try not to despair, but it is impossible.

This has gotten worse with the treatment, that's why I'm scared. Theoretically it should stabilize or improve, but not get worse sad

Maybe vitamin B deficiency is related?

Fissures have also appeared in my tongue ....


Symptoms often do get worse when we start treatment...and can take awhile to stabilize...and then improve.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32652
   Posted 1/26/2018 12:54 PM (GMT -6)   
OriolCarol said...
But... When i check my vitamin b12 levels, i'm so high... It's a joke sad how is it posible? T'he intervalo reference is between 200-400. I'm on 1000


When mine were tested a few years ago, they were something like 850. (can't remember exact number, just that they were in the 800's.)
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32652
   Posted 1/26/2018 12:58 PM (GMT -6)   
OriolCarol said...
I attach a picture of my tongue. Here the fasciculation at the tip is not appreciated. But ... do you see this tongue normal? Before, I had it different, much more pink and smooth, now it's like "old" and I have loose papillae, like spun ...

Can vitamin B deficiency cause changes in the tongue?

I attach a photo.

https://imgur.com/a/Jw1HM


Well - your tongue looks better than mine....
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32652
   Posted 1/26/2018 12:59 PM (GMT -6)   
OriolCarol - are you detoxing daily?

And does it include a binder?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 563
   Posted 1/26/2018 2:54 PM (GMT -6)   
What is a binder? :C

I'm not doing anything to detox :C I take glutathione liposomal, vitaminc c, and some suplements, but i drink not so much water... because i'm sad and my mind thinks that all this is not going to be useful...

Traditional medicine has touched my psychological a lot, making me almost believe that all those doctors who deny my lymw can't be wrong ...... I must break that wall and be more optimistic, but it's so dificult...

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32652
   Posted 1/26/2018 3:22 PM (GMT -6)   
A binder is a supplement that pulls out the toxins from your GI tract and flushes them out.

A few examples:

- Activated Charcoal
- Powdered Bentonite Clay
- Diamoteaceous Earth

and a pharma toxin remover: Cholestyramine

Gultathioe (liposomal) is a good detox, as well.

You need to drink a lot of water...so try to increase that.

Some more detox:

warm epsom salt baths
dry brushing your skin prior to bathing and showering
milk thistle seed extract - to support your liver (aids detox)
Taking Nutramedix Pinella and Burbur.


You can add fresh squeezed lemon juice into some of your water. Best to drink with a straw to bypass your teeth..as it can damage the tooth enamel.
(and rinse your mouth out with clear water)
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4721
   Posted 1/26/2018 5:55 PM (GMT -6)   
My tounge fascilations started with the nerve damage from bartonella and lyme . They tried to tell me waiy for als and die .. its just bart lyme ....i would start bvt or get some rocephin fast ,wheelchairs and cpaps are no fun ...also iv magnesium and chinese cats claw alnosy immediately helped

TymeToKillLyme
Regular Member


Date Joined May 2016
Total Posts : 33
   Posted 1/31/2018 3:29 PM (GMT -6)   
Hey OriolCarol,

I had major twitching for 2 years straight. It has only recently subsided to about 10% of what it used to be (thank god). I had some what appeared like muscle atrophy at the time which I now believe to be subcutaneous fat that was destroyed by Lyme. It's noticeable in my foot, leg, arm, chest all on the left side. I was worried like you at the beginning too because it happened so fast.

Surprisingly the twitching continues 2 years later but I don't notice much 'atrophy' or more likely fat loss anymore. I assume this can happen anywhere in your body including the tongue. I've had literally every muscle in my body twitch, including intestines, anus, etc. 24x7 for years. I think there are much more likely things you would have noticed prior to tongue twitching if you had bulbar ALS. Swallowing, saliva, voice pitch changes, etc. In ALS muscles twitch because they are nearly dead - and happen after all of those other symptoms are apparent. It's not the same with Lyme twitching which can be an early symptom.

I firmly believe it's caused by the neuro-toxins produced by the dying bacteria that get in the way of your nervous system pathways and cause this randomized twitching effect. This will continue before, after and during treatment. For me it got worse and better in a cyclic pattern during treatment. If you notice it coming in cycles like that you can guarantee it's the same. It will probably spread and move around your body as you treat.

The 100% best thing you can do for yourself is to eat clean and detox - the sauna is one of the best methods and has immediate impact. Forget all those supplements crap everybody is wasting money on. I tried them all - no impact whatsoever. Start doing the sauna and those will decrease guaranteed.

Sweat it out, eat clean, no contact with chemicals or anything else. Don't use harsh cleaning products, stay away from cosmetics, hair product, even use chemical free deodorant. You have to let your body detox.

You will heal, guaranteed. turn

mudshark
Regular Member


Date Joined Aug 2017
Total Posts : 119
   Posted 2/1/2018 6:22 PM (GMT -6)   
It's my understanding the twitching in ALS come after muscle wasting/weakness, so I would not get too concerned that this is the cause. I'm a relative newcomer to the lyme fight and not long into treatment, but I can confirm that symptoms do get worse when you begin killing them.
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