Insane muscle twitching with mino.

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OriolCarol
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Date Joined Dec 2017
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   Posted 4/19/2018 10:43 AM (GMT -6)   
Anyone has experienced that? It's horrible and constant... could it be a herx?

Runninheid
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Date Joined Sep 2017
Total Posts : 52
   Posted 4/19/2018 12:01 PM (GMT -6)   
My 8 year old son experienced this.

He never had muscle twitches before taking mino, just fatigue, achy joints, painful feet, and anxiety.

When he started Artemisinin and mino, he soon developed the muscle twitches. The muscle twitches eased over time (3-4 months), then he stopped taking both Artemisinin and mino, and now he only occasionally gets the muscle twitches.

mpost
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Date Joined Feb 2015
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   Posted 4/19/2018 12:16 PM (GMT -6)   
OriolCarol said...
Anyone has experienced that? It's horrible and constant... could it be a herx?


it is almost certainly a neurological herx. the bacteria dies, the debris stimulate the immune response in the brain, the immune cells produce antibodies against borrelia. some cross react with nerve tissue and it gives u a bit of nerve damage, which you experience as twitching.

it will get much less intense with treatment. but it takes months.

OriolCarol
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Date Joined Dec 2017
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   Posted 4/19/2018 2:27 PM (GMT -6)   
It's being a heaven... but i will persist...

Than you for your response guys.

OriolCarol
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Date Joined Dec 2017
Total Posts : 730
   Posted 4/19/2018 3:22 PM (GMT -6)   
There is nerves in the chest? I have a lot of pain and i feel it like if i have and angina but ecg, holter etc... are normals

PDXtransplant
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Date Joined Jun 2017
Total Posts : 237
   Posted 4/19/2018 9:26 PM (GMT -6)   
I had lots of muscle twitching through my treatment and it's been one of my longest lasting symptoms. Mine definitely wasn't caused by mino bc I stopped taking that in August but continued to have major issues with it. In the past month, about a year after my symptoms started, my muscle twitching is close to gone. But it took forever and I was very frustrated with it.

Girlie
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Date Joined May 2014
Total Posts : 33967
   Posted 4/19/2018 9:40 PM (GMT -6)   
I had muscle twitching way before I even started treatment.

It was at it's worse in 2013 - a few months after my first symptoms.

All-over-my-body. Horrible.

But, now, I'd trade my nerve pain for the twitching - at least it didn't hurt.

Treatment cleared mine up.

Funny thing - it came back a few days ago - I'm currently taking Mepron, Ceftin and Bactrim.
Came back for a couple of days...and then it's gone again.
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
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Date Joined Dec 2017
Total Posts : 730
   Posted 4/20/2018 6:32 AM (GMT -6)   
And the neurophaty will be cured? I have some residual vibrating in my hands and feets... si i think it's what mpost says... antibodies attack nerves and damage it... but i don't have any other option... if i put abx my nerves damage but if i don't put abx bacteria will kill me... so i'm worried because i think it'll be permanent...

OriolCarol
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Date Joined Dec 2017
Total Posts : 730
   Posted 4/20/2018 6:54 AM (GMT -6)   
When this happens I think of all the most unlikely possibilities except the most logical ones ... I think of a neuropathy induced by the minocycline, a polyarteritis etc ... and I still get scared, before to be in a permanent abx regimen i was changing minovycline several times and i know that borrellia strains don't make resistance to abx but i think i've stopped mino 7 times, maybe it's now resistance... or maybe some strains of borreli can make it... it's disgusting sad

Deejavu
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Date Joined Aug 2005
Total Posts : 4442
   Posted 4/20/2018 6:55 AM (GMT -6)   
Hi OriolCarol,

So sorry to read that you are suffering from this. Are you detoxing (dry skin brushing, detox baths with Epsom salts and hydrogen peroxide, foot baths, etc.)? When bacteria die off they leave over toxins. If toxins are not eliminated they can cause havoc.

When I was sick with chronic lyme I suffered from the toxin Ammonia that caused joint pain, brain fog, fatigue, etc. What helped me was taking a remedy called Neuro-Antitox CNS/PNS which targeted the ammonia in my body and brain (it crosses the BBB).

Some people can actually smell the ammonia from their body. It kind of smells like cat urine.. rolleyes

Hope this helps,
Denise
12 years well ~ used Dr. Jernigan's protocol from his book about Biological Medicine (used Borrelogen, Microbojen and Neuro-Antitox).

I still detox even though healed and drink Green Vibrance. I come back to help others for others helped me when I was sick. Pay it forward! smile

http://javuviews.wordpress.com/2013/04/24/how-i-became-better-from-chronic-lyme

Deejavu
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Date Joined Aug 2005
Total Posts : 4442
   Posted 4/20/2018 9:13 AM (GMT -6)   
Just wanted to add this article regarding ammonia from lyme bacteria:

www.tiredoflyme.com/ammonia-a-lyme-disease-exotoxin.html

Denise
12 years well ~ used Dr. Jernigan's protocol from his book about Biological Medicine (used Borrelogen, Microbojen and Neuro-Antitox).

I still detox even though healed and drink Green Vibrance. I come back to help others for others helped me when I was sick. Pay it forward! smile

http://javuviews.wordpress.com/2013/04/24/how-i-became-better-from-chronic-lyme

OriolCarol
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Date Joined Dec 2017
Total Posts : 730
   Posted 4/21/2018 5:30 AM (GMT -6)   
Hi people.

Today my anxiety is better... i have more cramps amb muscle twitching... but i try not to worrie...

Today i've started with plaquenil but with a low dose, 200mg per day...

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 730
   Posted 4/21/2018 5:39 AM (GMT -6)   
I've read some reports about plaquenil and cardiotoxicity... i it common? Ventricular arrythmias, torsade de points etc...

Altought who has more heart problems related, plaquenil or zithromax? I'm worried about cardiotoxicity induced by plaquenil.

Post Edited (OriolCarol) : 4/21/2018 5:25:36 AM (GMT-6)


OriolCarol
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Date Joined Dec 2017
Total Posts : 730
   Posted 4/21/2018 5:54 AM (GMT -6)   
My current protocol now is: Minocycline 300 mg (now cut down to 200), Rifampim 600 mg, Artemisina 400 mg and Plaquenil 200 mg day.

Is it a good protocol? Can it hit hard my liver?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33967
   Posted 4/21/2018 1:40 PM (GMT -6)   
I know that Zith has the warning of Long QT Syndrome, but wasn't aware of the Plaquenil.


It is rare.

You're not taking the Artemisinin daily are you?

Or is it Artemisia (whole herb) you're taking?

Your liver enzymes need to be tested once a month...are you doing that? (along with kidney function and CBC)
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
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Date Joined Dec 2017
Total Posts : 730
   Posted 4/23/2018 6:17 AM (GMT -6)   
Girlie when you had muscle twitching, was it constantlly? Not in the same muscle but every 1 or 2minutes...

Cberg
Regular Member


Date Joined Jul 2017
Total Posts : 52
   Posted 4/23/2018 8:33 AM (GMT -6)   
I understand your concern. My muscle twitching is nonstop , mag supplements helped a bit but also I would check your calicum levels ! I am not exaggerating when I say every single muscle in my body has twitched.

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 730
   Posted 4/23/2018 10:55 AM (GMT -6)   
Yes, it's horrible because i'm all day thinking in ALS...

Ramps, muscle twitching, shortness of breath... it's impossible not think in ALS...

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 730
   Posted 4/23/2018 10:58 AM (GMT -6)   
When the difficulty in breathing manifests itself in ALS patients, is it before or after muscular atrophy?

OriolCarol
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Date Joined Dec 2017
Total Posts : 730
   Posted 4/23/2018 11:18 AM (GMT -6)   
I am afraid that antibodies have been leaked into the central nervous system and are attacking the neurons, or that an autoimmune process has simply been activated by attacking the nerves, and that, even after having reduced the bacterial load, it continues to attack the nerves.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33967
   Posted 4/23/2018 1:27 PM (GMT -6)   
OriolCarol said...
Girlie when you had muscle twitching, was it constantlly? Not in the same muscle but every 1 or 2minutes...


Yes, when it happens...it's constant - even quicker than every 1 or 2 minutes. Like maybe 20 seconds intervals... Sometimes in one muscle...sometimes in several.
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 : 730
   Posted 4/24/2018 11:28 AM (GMT -6)   
I know Girlie, it's disgusting.... Today i have it more prevalent in my legs... but my most annoying place is the tongue...it's numb all time and i can't handle it...i would cut it my tongue when i have this feelling...

I think this week i'll go to neurologist to take and electromiographic.... only to keep my mind in peace about ALS symptoms...

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33967
   Posted 4/24/2018 11:41 AM (GMT -6)   
is that an EMG?


I had both EMG and NCS done on my left arm/hand.

One was pads on various places on my arm and hand.

The other test was poking needles in various places on my arm and hand.


One hurt more than the other.

One made my left leg kick up. (lol)
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 : 730
   Posted 4/24/2018 11:44 AM (GMT -6)   
Yes Girlie,it's an EMG.

My llmd says that it is a small damage to the nerves, in response to the bacteria leaving my body ... it is true that my anxiety, panic attacks, shortness of breath, have improved a lot, but these symptoms of muscle twitching surpass me. ... I have them in the back, lumbar, hand, fingers, neck ....

mpost
Veteran Member


Date Joined Feb 2015
Total Posts : 1527
   Posted 4/24/2018 11:50 AM (GMT -6)   
OriolCarol said...
Yes Girlie,it's an EMG.

My llmd says that it is a small damage to the nerves, in response to the bacteria leaving my body ... it is true that my anxiety, panic attacks, shortness of breath, have improved a lot, but these symptoms of muscle twitching surpass me. ... I have them in the back, lumbar, hand, fingers, neck ....


it is hard to get rid of that twitching. i still have it from time to time.

so what do u think your neurologist will tell u? i have axonal damage and pathological EMG. that was in 2014 so 4 yrs ago. dr told me it's either one of the 3: cancer, autoimmune or infection. lol... thank you doc.

seriously. unless your doc is lyme trained he will only get you more confused.

im still around and can run, jump etc.... so after 4 yrs i guess that rules out als in my case.

probably if i go to a neurologist he'll tell me i have RRMS and hook me to interferon and some -lizulabs for rest of my life... no thanks
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