Twitching Anxiety

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Lymess
Regular Member


Date Joined Nov 2017
Total Posts : 40
   Posted 11/27/2017 1:06 AM (GMT -6)   
Hi Everyone,

I have been diagnosed with Lyme, Bartonella and borderline Babesia. I have had bodywide twitching everyday for 3 years. But my anxiety has mounted yet again....I have fine twitches in the arches of my feet calves and hands for the last 9 months. Small muscle craps in the last 6 months. Also some muscle atrophy. My anxiety takes me to the worst scenario....that this is progressing to a serious MND.

I have been on herbs for two months and mag supplements with no change in the twitching. I am scared Mommy of two beautiful young babies.

I have read that twitching is a symptom for some, but on here I find it not a top common symptom.

I guess my question is do you have twitching everyday? Bodywide or fine localized twitches? Amplified reflexes?

All responses are much appreciated.

Thank You,

Lymess

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 11/27/2017 2:15 AM (GMT -6)   
Lymess - I had body wide twitching too. It started a few months after my initial symptom - first area was my back - left side.
It subsided with treatment. Magnesium supplementation didn't help mine - but Treatment did.
They do make an appearance sometimes - usually when I'm herxing - but other times seemingly for no reason.

I also had muscle atrophy (along with tremors, and weakness )
When I went to the Neurologist - I sat in the waiting room for my appt and thought to myself "Please let it be MS or Parkinson's - but NOT ALS)
I was a mess emotionally during that time period - some very dark days.
Yes - I had the twitching everyday for many months.

The Neurologist sent me to a Physiatrist who did an EMG and NCS - I remember reading hyperflexia on one report - my left arm had different numbers than my right arm. Apparently that's not what you want to see. Think the ratings were from 0 to 4?
I think a number 2 is good ?
But it's best to have both numbers match on left and right side.
Maybe that's the report that I read hyperflexia.

Are you being treated by a LL Dr?
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

mudshark
Regular Member


Date Joined Aug 2017
Total Posts : 119
   Posted 11/27/2017 7:58 AM (GMT -6)   
Twitching in my calves was one of my first symptoms about 3.5 years ago. I also had leg and foot cramps at the time and some odd sensory things with my feet. At first I thought it was dehydration, but supplements didn't helps and I later came across ALS as a possible cause and started freaking out. I went to doctors got checked out and was told it was benign, so I stopped worrying about it. It went away completely after a few weeks and stayed gone for about 3 years.

Then back in March of this year it came back, but this time with many more odd symptoms and more widespread, including fine twitches and tremor in my hands. After months of more testing by all sorts of specialists they only thing they could determine was some sort of idiopathic peripheral neuropathy. But it didn't explain all the other odd body-wide symptoms. My own research started pointing to lyme and even though my testing has been negative so far my LLMD is treating based on symptoms and history of tick bites, which have been very many.

The good news is the twitching has really subsided a great deal since taking abx for the past 2.5 months and to the point I rarely notice it anymore. The tremor in my hands has also improved a great deal.

Also one of the facts about twitching that re-assured me was that in the case of ALS it only appears after clinical weakness in muscle. It is not an initial symptom.

Post Edited (mudshark) : 11/27/2017 7:02:10 AM (GMT-7)


magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 1246
   Posted 11/27/2017 8:01 AM (GMT -6)   
sounds like parasites to me-have you treated parasites?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 11/27/2017 9:12 AM (GMT -6)   
Mudshark - I also read that ALS twitching isn't an early symptom - more late stsge
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

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 335
   Posted 11/27/2017 9:23 AM (GMT -6)   
From what I have read, I personally believe twitching is a very very common symptom of tick borne infections.

Twitching was one of my most annoying and persistent symptoms before I started treatment. I had twitching in one eyelid constantly every day for 2+ years straight. Twitching in my legs was almost daily. Lots of twitching in my upper face. Arms and hands and fingers would twitch occasionally.

Since treatment my twitching has been reduced by at least 95%.

I (like Girlie) also worried and suspected I may have had MS. I also looked into BFS (Benign Fasiculation Syndrome), and ALS.

Luckily, I was encouraged by people here to see an LLMD. If I hadn't, I bet I would still be a twitching wreck.

I wonder if your treatment should be amped up or changed. Have you tried any antibiotics yet?

Lymess
Regular Member


Date Joined Nov 2017
Total Posts : 40
   Posted 11/27/2017 12:22 PM (GMT -6)   
Thank you Thank you Girlie, Mudshark, Magoo2 and Missouri for taking the time with your honest feedback! Reassurance helps to stay focused on trying to heal. Helps with those dark thoughts and moments. So a very sincere Thank You!

My story kinda goes like this: Had one tick bite that I remember in 2005 at the nape of my neck. Didn’t think anything of it, for I did not know about Lyme in CA or Lyme at all for that matter. No major symptoms manifested to my knowledge. But looking back I can now remember some strange things. Like having to have an appendectomy in 2008.

Fast forward to the birth of my First baby 2014. 4-6 weeks after birth had joint pain in wrists, elbows, bottoms of feet only at night And would subside 20 min after getting out of bed. 6 months later the twitching began. Which has been my main constant disturbing symptom.

I have also experience random sensory things, tingling in feet hands, random numbness, 4 times feel like water running down my leg, hearing will fade out of one ear for a min and return, dizziness, vision problems.

Went to 3 different neurologists, an Rhematoid Dr.
Had an EMG early on (clean)

MRI’s found an Unidentified white spot, which was explained to me as normal for my age or if I suffer from migraines (which I do not)

tested for POTS -tested positive on tilt test

Drs diagnosed me with Benign Fas Syndrome. After reading the forums there and putting my pieces together I sought out an LLMD and was tested for Lyme. Tested Positive only through Igenex.

I feel like since the twitches have not gone away and they now have become fine in some areas. Localized in my feet. And the muscle atrophy. Ihave returned to that dark anxious place of deep worry of ALS & MS.

I remember First Neuro telling me that bodywide twitching isn’t a sign of ALS that ALS is fine and localized and usually starts in the feet. He said the twitches look like they are dancing. This is exactly what my feet do. Sooo scary! Does anyone else’s feet do this? And for how long?

I can’t get his voice out of my head from saying just that. I try to remind myself about the weakness first to give me some peace, but so hard when the darn twitching is constant. My thoughts go right back to the dark place.

I have only just begun treatment with herbs. Wanted to start with a natural protocol first to see if it worked before blasting my immune system with antibiotics. But honestly if you all are telling me that the antibiotics helped make your twitching go away....I am ready to try.

Which antibiotics did you take when you noticed the twitching subside?

Big Thank You’s to All

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 335
   Posted 11/27/2017 12:56 PM (GMT -6)   
I started treatment about 4 months ago. My LLMD has me on antibiotic monotherapy (one antibiotic at a time). Many people have told me monotherapy will not put lyme and co in remission, but anyways...

1st month -Ceftin - worked wonders. The twitching started fading quickly after starting Ceftin. By about day 8 or so I had my first twitch free day in over 2 years. The next 3 weeks after that barely a single twitch here or there

2nd month -Zithromax - seemed to do no nothing for me. Twitching started fading back in after a few days on this one. All symptoms started creeping back on this one. Twitching returned to about 50% of pre-treatment level by the end of this month on Zithromax.

3rd month - Flagyl twitching reduced back down close to Cetin levels (95% gone). Still having monthly flares of about 6-8 days of slight symptoms and some twitching.

4th month - Doxycycline - twitching still almost gone (95% gone) - the twitching that is present is low level and feels different than usual (lighter and shorter). Some new occasional low level twitching in new places that have never twiched before.

I am about to start Babesia protocol.

Interesting you actually had a BFS diagnosis. I used to spend a lot of my time reading those forums. Knowing what I know now, I think many of those people were actually struggling with infections.

Good luck fellow twitcher

Lymess
Regular Member


Date Joined Nov 2017
Total Posts : 40
   Posted 11/27/2017 4:11 PM (GMT -6)   
Thank you bunches for the very helpful informative response Missouri!

I will inquire and propose this to my LLMD! I’m am thrilled that your twitching has depleted to 95%! Such hope! I can only hope for you and other twitchers that it stays!!!

Curious what other symptoms you had?

Yes, I too don’t believe that BFS is the root cause.... it’s just a symptom of what I believe to be other infections as well.

mudshark
Regular Member


Date Joined Aug 2017
Total Posts : 119
   Posted 11/27/2017 7:31 PM (GMT -6)   
My twitching began to subside after taking penicillin in advance of a tooth extraction, which had been causing infections in my gums. The improvement in the twitching and some of my other symptoms led me to be more convinced I had a bacterial/tick-bourne infection. That also helped convince my LLMD, who put me on doxy and amoxicillin, which I have been taking for about 3 months now. My twitches are very few and far between now.

Like you I had a lot of other weird and seemingly unrelated things going on that were pointing to something more systemic - something more than ALS, MS or similar would cause such as:

* twitching - primarily in calves, but also lips, face, upper legs, back, fingers
* leg muscle cramps
* leg muscle soreness / tenderness to touch
* exercise intolerance
* painful shin bones to touch
* altered sensations on bottom of feet
* severe foot pain in soles of feet
* foot and leg muscle tightness
* intermittent shakiness and weak feeling in legs
* burning skin on lower legs and forearms
* urinary issues - difficulty starting stream, frequency, excessive volume, nocturia
* alcohol intolerance / severe hangovers on little alcohol
* headaches
* intermittent generalized fatigue
* thumb and forefinger tremor
* occasional days feeling anxious, shaky, jittery and generally hyped-up all over
* interrupted sleep
* balance issues

This is just a few of the symptoms off the top of my head I have been having since March of this year. I presented a page and a half list of symptoms to my LLMD and he got quite a kick out of it. A lot of these would come and go intermittently and not all would be present at once, but after 3 months on abx darn near all of them are either gone or greatly subsided. Only those that I feel are related to Bart remain (foot and lower leg issues).

I don't think I'd be working about ALS if I were you. You would have to have clinical weakness, and it is a weakness that does not come and go intermittently. It's always there and only gets worse. That comes before twitching.

PDXtransplant
Regular Member


Date Joined Jun 2017
Total Posts : 207
   Posted 11/27/2017 8:47 PM (GMT -6)   
I have a lot of muscle twitching, too. Mine started along with some of my other major symptoms in one calf. I went a couple of months without a diagnosis, and the twitching/muscle jerks got pretty bad right before I started treatment. They decreased once I started antibiotics, although they were still present, mostly when I was in bed. Occasionally, I would get one huge body jerk, also while in bed, which would completely freak me out. I haven't had one of those in awhile. But my twitching has recently increased and I don't know why. It seemed to coincide with an increase in my dosage of LDN, but maybe it wasn't that. I'm seeing a new LLND in a week and hope to get some relief from it. I had other symptoms that made me worry about MS/ALS as well, but most of those resolved with treatment.

Lightlife
Regular Member


Date Joined Jan 2017
Total Posts : 185
   Posted 11/27/2017 9:46 PM (GMT -6)   
Twitching is a huge Lyme and company symptom. Full body visable and non visable and fine. And some last soooo long six months or more. Some just a few days or less... I've been twitching for years. Much much less so with treatment. I just increased my herbs and have had a bit of twitching so I know it's all still in there and I must keep increasing doses. And then to address biofilms and cysts. It's a slow road

The head trip about other issues Is the worst. I know too well. Just remember you do have Lyme. And Treat that. That's enough to worry about. When in doubt remember and calm yourself down and say to self it is the Lyme. Because it is. Put away google. You have your diagnosis. Onnto coinfections!

LilaJ
Regular Member


Date Joined Nov 2017
Total Posts : 84
   Posted 11/28/2017 12:08 AM (GMT -6)   
Can abx cure this Lyme and bartonella-lm finding it a bit daunting. Am in UK so no Llmd s l don't think. It's very recent I've started symptoms,but think l.was bitten 6 months ago,so am scared its chronic
The blood tests were negative but the symptoms are overpowering.
The tremors and anxiety have impacted on all social life and don't want to be reclusive but find the anxiety very intense.
I think this is a Bartonella symptom? How do people manage it?
Is there anything apart from abx that also helps?
Good luck to everyone in healing...

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 11/28/2017 1:41 AM (GMT -6)   
Lila - I hope you see this post:

There are some LLMD's in the UK. You can email me (click on the envelope below my screen name on the left)
and I can give you some suggestions.

I didn't really manage my psyche issues - thankfully for me they improved a lot even prior to treatment - on their own. I was not functioning very well for awhile.

Are you detoxing? Particularly taking anything for the brain?

A couple of suggestions you could try:

Nutramedix Pinella - Nerve Brain Cleanse

OR

Jernigan's Neuro Anti-tox II - CNS/PNS


Also taking a GI binder helps reduce overall toxin load. The one I take is Activated Charcoal. But, it must be taken a couple hours away from your antibiotics, other supplements, food, etc.
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

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 335
   Posted 11/28/2017 1:06 PM (GMT -6)   
mudshark said...
My twitching began to subside after taking penicillin in advance of a tooth extraction, which had been causing infections in my gums. The improvement in the twitching and some of my other symptoms led me to be more convinced I had a bacterial/tick-bourne infection. That also helped convince my LLMD, who put me on doxy and amoxicillin, which I have been taking for about 3 months now. My twitches are very few and far between now.

Like you I had a lot of other weird and seemingly unrelated things going on that were pointing to something more systemic - something more than ALS, MS or similar would cause such as:

* twitching - primarily in calves, but also lips, face, upper legs, back, fingers
* leg muscle cramps
* leg muscle soreness / tenderness to touch
* exercise intolerance
* painful shin bones to touch
* altered sensations on bottom of feet
* severe foot pain in soles of feet
* foot and leg muscle tightness
* intermittent shakiness and weak feeling in legs
* burning skin on lower legs and forearms
* urinary issues - difficulty starting stream, frequency, excessive volume, nocturia
* alcohol intolerance / severe hangovers on little alcohol
* headaches
* intermittent generalized fatigue
* thumb and forefinger tremor
* occasional days feeling anxious, shaky, jittery and generally hyped-up all over
* interrupted sleep
* balance issues

This is just a few of the symptoms off the top of my head I have been having since March of this year. I presented a page and a half list of symptoms to my LLMD and he got quite a kick out of it. A lot of these would come and go intermittently and not all would be present at once, but after 3 months on abx darn near all of them are either gone or greatly subsided. Only those that I feel are related to Bart remain (foot and lower leg issues).

I don't think I'd be working about ALS if I were you. You would have to have clinical weakness, and it is a weakness that does not come and go intermittently. It's always there and only gets worse. That comes before twitching.


I'd say that pretty much hits the mark for my symptoms too. I also have some vision issues, and cognitive issues too.

Mudshark- I am curious your Western Blot bands

Garion
Regular Member


Date Joined Feb 2018
Total Posts : 34
   Posted 2/21/2018 4:57 PM (GMT -6)   
I'm also interested in western blot or other tests that you might have done.

Symptoms are very similar to mine

Szabo246
Regular Member


Date Joined Sep 2017
Total Posts : 484
   Posted 2/22/2018 2:54 AM (GMT -6)   
Lila I am in the UK and I’m seeing an llmd, email me if you would like details. There is also a place that offers free rife sessions

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 335
   Posted 2/22/2018 10:46 AM (GMT -6)   
Hey Garion,

I have Western Blot IGG bands 30, 41, 58, 66. The only other test for infections my LLMD ran was for Strep. My strep test came back pretty high.

Lymess
Regular Member


Date Joined Nov 2017
Total Posts : 40
   Posted 2/22/2018 12:52 PM (GMT -6)   
Haven’t checked this post in awhile. Thank you Lightlife and PDXtransplant. Your words are comforting. I am still twitching, but my anxiety is reduced. Currently taking a break from herbs. Sending peace and gratitude to you all.

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 335
   Posted 2/22/2018 1:45 PM (GMT -6)   
Are you doing any treatment at all?

Lymess
Regular Member


Date Joined Nov 2017
Total Posts : 40
   Posted 2/22/2018 2:16 PM (GMT -6)   
Not right now taking month off then will restart

Garion
Regular Member


Date Joined Feb 2018
Total Posts : 34
   Posted 2/22/2018 5:39 PM (GMT -6)   
Hi Missouri, thanks for the quick response. Currently i'm only positive on band 41. I curious what other symptoms did(do) you have?

I'm having an ispot test done this week. Even if it's negative i will probably try herbal treatment to see if i can produce a herx, but i am really encouraged by you saying about 95% of your twitching was gone after a month of antibiotics, even if it came back. I've been twitching for almost 3 years, and it's just gotten worse and worse, i am so over not knowing what it is.

Lymess, i feel you. I had a really bad ALS scare earlier this year. I did an EMG and it came back clean which provided a little bit of relief. Have you ever taken abx or just herbals? And how did you test positive?

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 335
   Posted 2/22/2018 8:03 PM (GMT -6)   
Garion I have been pretty lucky so far. Many of my symptoms have greatly subsided since starting treatment. I have a couple stubborn symptoms I’m working on.

Symptoms greatly reduced or eliminated:
Fatigue
Brain fog/cognition/word recall
Anxiety
Numb patches of skin (mainly shoulder blades)
Burning patches of skin (mainly shoulder blade and torso)
Twitching
Night terrors
Insomnia
Exercise intolerance
Leg/hamstring cramps

Stubborn symptoms im still working on::
Double vision in one eye
Low pulse
Low blood pressure

Garion what lab did you test with? I had a Labcorp test about a week before my Igenex that only had band 58 and 66. The lab selected makes a big difference. Igenex tests more than one strain and handles blood specimens appropriately. Many other labs only test for the B31 New England strain of Borrelia.

As far as treatment goes I have mainly done antibiotics. I also added Samsara herbal powder blend to my dialy protocol. It has several of the Buhner core herbs all mixed together.

After a bad tick attachment, my health and vitality were mysteriously going down the tubes for 2-3 years before I started treatment.

Anyways I’m rambling... does that answer your questions? smile. Feel free to shoot more out there.

Garion
Regular Member


Date Joined Feb 2018
Total Posts : 34
   Posted 2/24/2018 11:25 AM (GMT -6)   
Thanks for the information. I've had labcorp and igenix. Labcorp first round came back with 41, 58 and 66 which are all non specific bands if i'm not mistaken, it's interesting that you had those too. My Igenex test came back with only band * 41 IGM and I 41 IGG. I tested with labcorp again and came back negative on everything.

I guess the only other thing i want to ask, can you give me some hope in terms of treatment? I read and see so many stories of people not getting better that i am really worried things are just going to get worse and worse. You seem to have similar issues to me and it seems like you have had a lot of success in a relatively short amount of time. Did you herx a lot? Are you confident of 100% remission? Do you detox? The detox seems like so much work, it's all overwhelming

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 335
   Posted 3/7/2018 9:24 AM (GMT -6)   
I also seem to be noticing a certain profile of symptoms that seem to accompany bands 58 and 66 lighting up. No, I don't think those bands are specific to Lyme though. My hypothesis is that a particular strain of Bb that light those bands up. Possibly the STARI or Master's Disease strain. Too bad the CDC / NIH have very little interest in investigating.

I hope I can offer you some hope. I have been pretty lucky so far. I do not consider myself in 100% remission yet, but when I think back to how bad I was at the point I started treatment I realize how far I have come in the ~8 months of treatment.

It is amazing! My life is coming back to me. I am catching glimpses of my old self and seeing the grip of anguish, darkness, and misery slip away.

*knocks on wood* lol
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