Tongue problems.

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OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 563
   Posted 4/18/2018 6:17 AM (GMT -6)   
Does anyone in the forum have a permanent fasciculation on the tip of the tongue? I am terrified that I will progress to a bulbar ALS ....

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32667
   Posted 4/18/2018 10:39 AM (GMT -6)   
I didn't have a fasciculation on my tongue, but for a short time when I was checking for bulbar ALS, my tongue has some subtle movements - but not twitching - more worm like.

I haven't checked lately...but the NP at the J clinic looked at my tongue and never mentioned anything. (I can't remember if I told her about what I saw)


You're in treatment now...so try not to worry about the bulbar ALS. (I know it's easier said than done)
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 4/18/2018 1:21 PM (GMT -6)   
Yes, girlie... i shouldn't be worried... but i have numbness i my tongue every time when i'm on abx sad and i look the twitchings... and think that i'm going to die from this... it's horrible

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32667
   Posted 4/18/2018 1:27 PM (GMT -6)   
OriolCarol said...
Yes, girlie... i shouldn't be worried... but i have numbness i my tongue every time when i'm on abx sad and i look the twitchings... and think that i'm going to die from this... it's horrible


I know - I have worries, too...not about dying though...just that I'm going to be debilitated like this the rest of my life.

Keep treating....that's all we can do.
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 4/18/2018 1:41 PM (GMT -6)   
You're right, Girlie. We have to be brave

My doctor told me not to stop the antibiotic, but he has decreased the dose. He wants to add plaquenil, he says it will help to modulate my immune system and it is also effective against borrelia ...

I am currently taking minocycline (300mg, but down to 200), rif (600mg) and artemisinin. I had to stop ceftriaxone because it hurt my stomach and I had diarrhea ...

I am afraid of adding plaquenil ... but he says it is safe and that it will help me.

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 563
   Posted 4/18/2018 2:24 PM (GMT -6)   
Today my anxiety is better, no more panik atacks... and i think that today i will can sleep at home... because these days i've been sleeping with my dad on the car near the hospital...

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32667
   Posted 4/18/2018 3:17 PM (GMT -6)   
OriolCarol said...
You're right, Girlie. We have to be brave

My doctor told me not to stop the antibiotic, but he has decreased the dose. He wants to add plaquenil, he says it will help to modulate my immune system and it is also effective against borrelia ...

I am currently taking minocycline (300mg, but down to 200), rif (600mg) and artemisinin. I had to stop ceftriaxone because it hurt my stomach and I had diarrhea ...

I am afraid of adding plaquenil ... but he says it is safe and that it will help me.


What I don't like about the plaquenil is the long half - life - something like 50 hours.
So, after being on it for months...it will take a very long time after stopping for it to leave your system.
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 : 32667
   Posted 4/18/2018 3:19 PM (GMT -6)   
OriolCarol said...
Today my anxiety is better, no more panik atacks... and i think that today i will can sleep at home... because these days i've been sleeping with my dad on the car near the hospital...


Your dad and you have been sleeping in the car by the hospital?

Oh my - you poor girl. I'm so sorry that you feel so worried.
What a wonderful support your father is...
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 4/18/2018 7:45 PM (GMT -6)   
Yes, girlie.... i hope it will be better with the time...

I'm scared because all my body is twitching... i feel my muscles pooping, twitching... i hope it'll be the bacteria leaving my body... it's horrible

PDXtransplant
Regular Member


Date Joined Jun 2017
Total Posts : 207
   Posted 4/18/2018 9:12 PM (GMT -6)   
My first major lyme symptoms resembled panic attacks that sent me to the ER 5 times in one week, two by ambulance. Luckily, my liver enzymes were crazy high, so there was obviously something wrong, they just didn't know what it was. However, by the time I was back in the ER for the 3rd time, the Drs started to suggest it was anxiety or panic attacks causing my problems. I still get angry over how clueless the doctors were and how they treated me. I'm approaching my year 'anniversary' of the initial event that sent me to the ER.

During that first ER visit was when I started getting muscle twitching. I also had partial facial and possibly vocal cord paralysis, which also caused swallowing difficulties, add it all together and I really thought bulbur ALS was a possibility. I started examining my tongue for fasciculations, convinced I saw those too.

I completely empathize with you. I live by myself and when I was going through this, my dad flew out to stay with me. While we didn't sleep in the car near the hospital, every night I went to bed afraid I would wake to one of the episodes that would send me to the ER. It was a rough time. But hang in there. I felt as if the progress was really slow despite the fact that my dr said I was improving at a faster than normal rate. So expect a long road. Try not to be afraid. Lots of us have been there.
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