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Posted 5/22/2018 6:17 PM (GMT 0)
I would like if other people could answer that.

Do you have fasciculations in diferents parts at the same time?

Do you have twitching when you're walking?

Can you indice twitching, when you push your muscles?

Do you have leg twitching 24/7?
Posted 5/22/2018 6:41 PM (GMT 0)
maybe....

Twitching was one of my long gone sx that recently resurfaced. Just when I thought I was free of it.

I have a spot just below my left eye that comes and goes. Looking in a mirror I can see it pulse. Today it is pretty active starting early this morning driving to work and continuing thru the day.

I does twitch when I walk, but I can't induce it on command.

My left thigh just above the knee is another recent problem spot.
Posted 5/22/2018 6:43 PM (GMT 0)
I'm worried because i can't induced it... push my leg and then pup pup pup... or make strenght wih my hand and then pump pump pump... i'm worried that it mean atrophy...
Posted 5/22/2018 6:44 PM (GMT 0)
If your eyelid is twitching, it's often because your eye is too dry. I keep a handle on my eye twitches with lots of eye drops, it usually makes them go away.
Posted 5/22/2018 6:46 PM (GMT 0)
i notice the twitching mostly in my legs, my calf muscle area, sometimes thighs. occasionally, on my abdomen muscles and pec's.

twitching was very pronounced before starting treatment. but has reduced alot.

i notice the twitching mostly when resting, at night before falling asleep. i dont notice it all when i am up walking about.
Posted 5/22/2018 7:37 PM (GMT 0)
My calves have twitched 24/7 for 16 months now; I have Lyme and Bartonella (Bart test from Galaxy was off-the-charts positive; Lyme was borderline). So many other symptoms have faded with treatment, but that single one just won't stop. 2 Months Doxycycline, 8 months Rifampin/Biaxin/Tindazole, currently using herbs (hout/sida mainly) and other supportive things. They were fading quite a bit on the Antibiotics but I needed a break, 10 months non-stop was a bit much. Will likely dive back in with antibiotics in a few weeks. Sigh.

Sometimes I get "thumpers" other spots (just what i call them lol; usually my arm or thigh, goes hard for 20-30 seconds and fades; sometimes intermittently for 1-2 days).

I've tried it all, Magnesium, no caffeine for 7 months solid, even rubbing prep H on my calves (I know, ridiculous). Nothing seems to make it better or worse except anxiety/panic attacks (my first, and worst, symptom when I started to become sick - and still the worst one when I 'herx').

This is my first post btw - but I've lurked for over a year - and am a true poster-child for chronic bartonellosis, as my LLMD put it.

And yeah I tend to not notice now unless I focus on it. They're just there. Hopefully they'll go away some day as my other symptoms do.
Posted 5/22/2018 7:47 PM (GMT 0)
Welcome Johnny

As for me, i twitch 24/7. Mainly in feet and calves, but other areas too. I've twitched like this for over 3 years.

I can induce twitching in my eyes by closing them really tightly for a second or two. Besides that i can't really induce them. I do have twitching when i walk, but in the muscles that aren't currently flexing. When i flex the twitch stops.

Otherwise i agree with what Johnny said, stress makes them worse, and i get thumpers but those usually dissapear after 30 seconds or so.

Also i've had two EMG tests, about 2 years apart. Both came back normal.

I haven't been on antibiotics for very long, but i hope they start working soon.
Posted 5/22/2018 7:55 PM (GMT 0)
If i have a clean EMG, it means no atropy, but could i have atrophy and a clean EMG? I'm so concerned about it... tomorrow i'll go again to my neurologist to check my muscles again... i can't live with this fear...
Posted 5/22/2018 8:01 PM (GMT 0)

JohnnyG113 said...
My calves have twitched 24/7 for 16 months now; I have Lyme and Bartonella (Bart test from Galaxy was off-the-charts positive; Lyme was borderline). So many other symptoms have faded with treatment, but that single one just won't stop. 2 Months Doxycycline, 8 months Rifampin/Biaxin/Tindazole, currently using herbs (hout/sida mainly) and other supportive things. They were fading quite a bit on the Antibiotics but I needed a break, 10 months non-stop was a bit much. Will likely dive back in with antibiotics in a few weeks. Sigh.

Sometimes I get "thumpers" other spots (just what i call them lol; usually my arm or thigh, goes hard for 20-30 seconds and fades; sometimes intermittently for 1-2 days).

I've tried it all, Magnesium, no caffeine for 7 months solid, even rubbing prep H on my calves (I know, ridiculous). Nothing seems to make it better or worse except anxiety/panic attacks (my first, and worst, symptom when I started to become sick - and still the worst one when I 'herx').

This is my first post btw - but I've lurked for over a year - and am a true poster-child for chronic bartonellosis, as my LLMD put it.

And yeah I tend to not notice now unless I focus on it. They're just there. Hopefully they'll go away some day as my other symptoms do.

I sometimes get that thumping as well. Pretty nuts.
Congrats on being the poster-child for Bart! Do you have swollen glands, raised nodules along shins, morning foot pain, headaches, and strange neurological phenomena then?
Posted 5/22/2018 8:05 PM (GMT 0)

OriolCarol said...
I would like if other people could answer that.

Do you have fasciculations in diferents parts at the same time?

i do, but not often, very rarely and only when i have a very bad herx.
I had this when first started mino in 2015. 36h after initiating mino, i had twitches all over my body, and they were visible to other ppl. I remember i came to the office and they were all staring at my arm ...

OriolCarol said...

Do you have twitching when you're walking?

i have no idea. maybe. i walk so the muscles are usually stretched so i cannot pay attention to what is twitching and what not


OriolCarol said...

Can you indice twitching, when you push your muscles?

huh ?

OriolCarol said...

Do you have leg twitching 24/7?

no. it flares sometimes. then i have weeks of complete silence. but that is precisely how RRMS is going.

If u are trying to find a pattern, u will fail. In lyme there is great variety of neuro symptoms . U can have anti ganglioside antibodies, or u may not have them. I do not have them... others on forum do.
U may have axonal motor neuropathy, i do have this which suggest motor neuron disease of some sort. But it's not ALS.
/www.healingwell.com/community/default.aspx?f=30&m=4016705

Things do not fall into "the right places" when u try to diagnose lyme. It is a tissue disease. Tissues are very complex things. If u get an immune mediated reaction in some tissue, that involves multiple antigens, that can look like anything ... there's no point in looking for a pattern. U have neurological symptoms plus positive WB and u respond to antibotics => u have lyme. The rest are just details....u have ALS or not, u have MS or not ... these are not diseases, are symptoms of something...

Post Edited (mpost) : 5/22/2018 2:08:51 PM (GMT-6)

Posted 5/22/2018 8:29 PM (GMT 0)

Fronton said...
I sometimes get that thumping as well. Pretty nuts.
Congrats on being the poster-child for Bart! Do you have swollen glands, raised nodules along shins, morning foot pain, headaches, and strange neurological phenomena then?

Swollen glands, headaches, and neuro stuff, throat issues, morning foot pains were not as severe for me but the burning feet/calves were awful... reflux, insomnia, severe anxiety, jerking involuntary movements, tremors, fatigue, rashes, low blood pressure, high heart rate/skipped beats/chest pain, joint pain...

The list goes on forever, lol. After a full year of treatment its mostly the twitching, neck/headache pain/lightheadedness, minor throat stuff and minor sleep stuff. Symptoms down from like 40 to 4 or 5.

But the #1 indicator of a herx or flare for me is sobbing...Basically not being in control of anxiety/emotion and becoming weepy. Happened when I first became ill, the first couple weeks of Rifampin combo, the first couple weeks of Hout/Sida herbals... Almost like my bat signal smile
Posted 5/22/2018 8:42 PM (GMT 0)

OriolCarol said...
If i have a clean EMG, it means no atropy, but could i have atrophy and a clean EMG? I'm so concerned about it... tomorrow i'll go again to my neurologist to check my muscles again... i can't live with this fear...

I went through all of this, multiple neurologists and fear and scary forums (not positive, helpful forums like this one). I had the EMG and other tests. My Neuro was a complete jerkwad/dismissive... but twitching is pretty much never a pure indicator of a neurological disease. And if we're talking the SCARY one (that I don't mention by name), the people who do have it have such fine, light twitching that the neurologists need to use a special light to see them. The Doctor's usually see it, not the patient. The patient usually starts with weakness. Can't button a shirt, cant use a leg...etc. Even asking if I might have it, he kinda looked at me like... "No."

I don't know you and I'm not a neurologist - so I can't speak in absolutes. I just know that for me personally my healing didn't really start until I learned to let go of the severe fear and anxiety of the unknown's, to accept my situation and to live one day at a time. It took me months though and I realize saying it on a forum isn't going to make it happen. I hope you find some peace.

And, If it is Bartonella, it in itself causes said anxiety/fear... sad
Posted 5/23/2018 8:09 PM (GMT 0)

JohnnyG113 said...

I went through all of this, multiple neurologists and fear and scary forums (not positive, helpful forums like this one).

u heard that ? we are too positive here !!

get a bit more depressed people ! we are overflowing the planet with joy and happiness !
Posted 5/23/2018 8:42 PM (GMT 0)
He's an idiot... i went today to neurologist and he said i'm neurotic and paranoic.... i pray him of he could do me an EMG and nerve conduction and desagree but cost me 20 0 dolars....i'm feel like an idiot now.... i'm feel soo idiot... i hate myself.
Posted 5/23/2018 8:50 PM (GMT 0)
Oriol - take a deep breath....

You're not an idiot...you are scared. I've been scared many, many times with this disease.

Try to do something to get your mind off this disease - for at least a few hours per day.
This is a long haul treatment...so please give it some time.

Take warm baths, do some light exercise, listen to music...and try to find some peace....for a few hours each day.


Sending you hugs.
Posted 5/23/2018 10:41 PM (GMT 0)
Emg is a subjective test anyway. Depends who is looking at it
Posted 5/23/2018 10:45 PM (GMT 0)
Thank you Girlie, you're a good person and this foro give me hope to fight with this ****ing lyme....

Cberg, but a clean EMG, mean no atrophy?
Posted 5/23/2018 11:14 PM (GMT 0)
One friend of me, will give me a favour. He has a friend that is neurophysiologist and doesn't desagree with chronic lyme. He has accepted to study my muscles one for one and study diaphragmatic muscles, because i have a lot of twitches there.

I know that it doesn't cure but give relief to my mind
Posted 5/23/2018 11:28 PM (GMT 0)

OriolCarol said...
One friend of me, will give me a favour. He has a friend that is neurophysiologist and doesn't desagree with chronic lyme. He has accepted to study my muscles one for one and study diaphragmatic muscles, because i have a lot of twitches there.

I know that it doesn't cure but give relief to my mind

Will you let us know how it goes?

Have you got an appt already?
Posted 5/24/2018 1:07 AM (GMT 0)
twitching went away after a few months of bvt , iv rocephin , rifampin and iv magnesium ...i believe it was testament to had bad lyme bart had infiltrated and damaged the nerves ....think of it like a telephone line if the wires cross due to ca /mg or sodium /potassium inbalance, the signal is screwed ...even their toxins can mess with our chemistry and ph per georgia hunter info ...look into the pk(patricia kane protocol) protocol ...if you have als like symptoms you may not know how sick you are ....60k$ and 3 yrs of heavyduty treatment with bvt rife iv abx and herbs to get back to the land of the living...glad to be here without twitching it was so scary and annoying especial when in my chest near heart ...

dumb neuro said emg was not dirty enough despite visible, noticeable wasting on hands and feet via xray and tape measure ...take circumference of your wrists and ankles and calves and fore arms and comare in 2 weeks ..mine were very noticeable ...dont expect help from neuro ...his only options are to kill u slowly with immunosuppresives that cost 30 k or opiod pain meds to manage ..he may give muscle relaxer ...baclofen may help twitch due to calcium channel regulation.... find rocephin stat !!!

take it from some one waited 3 months to get in treatment in face of really scary symptoms and undeniable nerve damage ....when the nerve dies it is very very hard to get back if even at all possible ...every day i waited was more irreversible damage done!!! ...i couldnt make a choice and options and time made me act ...please treat what you know asap! ...then keep learning

Post Edited (bluelyme) : 5/23/2018 7:18:54 PM (GMT-6)

Posted 5/24/2018 1:47 AM (GMT 0)
My neurologist reported no muscle wasting - it was obvious when you compare my left with right.

I use the tape measure for my calves every month or so.

They are stable now (for a couple years) but I’m not taking any chances so I keep measuring.
Posted 5/24/2018 2:11 AM (GMT 0)
Atrophy can come in many forms however people with the Dis ease you are scared of don't have clean emgs. I myself have had a dirty emg with no definitive diagnosis. I saw the top doctor in America on the subject and I don't say that lightly he is literally world renowned. I am telling you from the bottom of my heart do not go down this rabbit hole. Accept lyme if a dr has told you it is lyme. There is no single test for the disease you are worried about and most of all STAY OFFLINE. Have you heard of benign fasciulations syndrome?
Posted 5/24/2018 2:35 AM (GMT 0)

Cberg said...
Atrophy can come in many forms however people with the Dis ease you are scared of don't have clean emgs. I myself have had a dirty emg with no definitive diagnosis. I saw the top doctor in America on the subject and I don't say that lightly he is literally world renowned. I am telling you from the bottom of my heart do not go down this rabbit hole. Accept lyme if a dr has told you it is lyme. There is no single test for the disease you are worried about and most of all STAY OFFLINE. Have you heard of benign fasciulations syndrome?

Good advice - i was so worked up about that disease - when the neurologist said I didn’t have it - I cling to that.
I did read that with that disease muscle fasciculations are usually at the end and not early on like I experienced and you too OriolCarol.

Try hard to Put it behind you - nothing good will come with those thoughts.
Posted 5/24/2018 2:39 AM (GMT 0)
Try pickle juice dill about 2 tablespoons to 4
Posted 5/24/2018 2:42 PM (GMT 0)

Noah2112 said...
If your eyelid is twitching, it's often because your eye is too dry. I keep a handle on my eye twitches with lots of eye drops, it usually makes them go away.

Disagree with this based on my experience of constant significant twitching in one or both of my eyelids almost 24/7 for over 2.5 years. I tried everything to make it stop before I finally found something that made it stop :antibiotics.

I guess eye lubrication would be a good thing to try before anti-biotics, but I wouldn't count on it working.

I also was somewhat able to induce twitching in some locations. I also had big "thumpers". Hardly ever twitch anymore *knocks on wood
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