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Twitches - yours and mine...comments please

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Posted 12/16/2015 4:11 PM (GMT 0)
Ya know, I've read enough threads on here to know that twitches are a common symptom for many of us.

I think I've experienced twitches because there have been times I've seen my skin move when the sensation was happening.

I also experience what I call poking (stronger) or tapping (weaker) sensations that remind me of baby kicks and there is no visible anything happening on my skin - the sensations feel more "internal" I'm not sure if those would also be called twitches.

How would you describe your twitches?

Opinions on my situation surely welcome :)

Thanks to all who post!
Posted 12/16/2015 4:16 PM (GMT 0)
Last night my left nostril twitched. At night when all is calm I can feel my insides vibrate. Very low and not annoying, but it is there. I will get a sharp stab in various places that makes me jump and say "oh." Yesterday my kidneys were hurting. I drowned myself in lemon water, apple juice and plain ole water. I was afraid I had a kidney infection because of that back pain. It went away. Lyme is so freakin weird.
Posted 12/16/2015 4:45 PM (GMT 0)
To me it sounds like you have not only some muscle twitching, but some nerve involvement as well (the poking). What feels like a baby kicking or even turning over would be muscles either twitching (baby kick) or spasms (baby turning over).

I still have a bit of twitching going on, but I've recovered around 80 - 90% now, which is nothing short of a miracle in my eyes. I grew up with twitching and muscle spasms so much so that I thought it was normal and didn't even question it until it was happening almost constantly (day and night), and others were commenting on it (embarrassing!). My muscle spasms have almost completely quit as well. It's rare - and weird now - to have one, although I did yesterday, but I think that was due to a number of things, not residual Lyme stuff.

I'm not sure how long it takes the myelin sheath to repair itself, but I know that nerves can take up to 7 years to regenerate - or find a new pathway to grow. My last husband had his arm amputated in a horrible work accident, so we learned all this the hard way.
Posted 12/16/2015 5:09 PM (GMT 0)
My twitching - is sometimes visible, and other times not. The really strong ones are visible.

It's not painful, but annoying.

I do think it is nerve involvement causing the twitching.
Posted 12/16/2015 5:29 PM (GMT 0)
Thanks for the input, ladies!

It sounds like the consensus thus far is that I'm dealing with various manifestations of muscle twitches....that are most likely caused by nerve involvement - right?

I guess I'm slowly, slowly, s-l-o-w-l-y healing because my lower legs used to feel like they were retaining water (I'm guessing they were numb - this was back when I met my LLMD).

That symptom has been gone a long while and seemed to be replaced by what I'm now realizing were muscle twitches all along.

Ironically, the visible ones started when I started Buhner.....along with other "fun" herx symptoms lol

So, Trav - as someone who has healed and is aware of the journeys of others who have healed......how do things go as you get closer to being fully healed?

I'm thinking that symptoms might slowly lessen overall......herxes become less and less "dramatic" until there are no herxes.....and then those final symptoms dissipate.

Is that an accurate summation?
Posted 12/16/2015 5:50 PM (GMT 0)

cd3764 said...
So, Trav - as someone who has healed and is aware of the journeys of others who have healed......how do things go as you get closer to being fully healed?

I'm thinking that symptoms might slowly lessen overall......herxes become less and less "dramatic" until there are no herxes.....and then those final symptoms dissipate.

Is that an accurate summation?

That is pretty much how it happened for me - and for most others. Some have their very first symptoms return just as they are nearing the end of their treatment, but I was infected for far too long and at far too early of an age for me to remember what my first symptoms were.

What you saw with your legs is common and part of " like the layers of an onion" analogy that is still said sometimes.
Posted 12/16/2015 7:02 PM (GMT 0)
Cd's description explains the type of twitches I've had and sometimes still have. IMO, they are caused by separate issues and differing conditions.
Posted 12/16/2015 7:35 PM (GMT 0)

Georgia Hunter said...
Cd's description explains the type of twitches I've had and sometimes still have. IMO, they are caused by separate issues and differing conditions.

Even though muscle twitching is on every Lyme symptom list and is easily explained this way??? Why would you think it's caused by other issues? Why NOT Lyme?
Posted 12/16/2015 7:37 PM (GMT 0)
Well, I had nary a twitch until lyme disease...again one of my first symptoms.
Posted 12/16/2015 8:13 PM (GMT 0)

Traveler said...

cd3764 said...
So, Trav - as someone who has healed and is aware of the journeys of others who have healed......how do things go as you get closer to being fully healed?

I'm thinking that symptoms might slowly lessen overall......herxes become less and less "dramatic" until there are no herxes.....and then those final symptoms dissipate.

Is that an accurate summation?

That is pretty much how it happened for me - and for most others. Some have their very first symptoms return just as they are nearing the end of their treatment, but I was infected for far too long and at far too early of an age for me to remember what my first symptoms were.

What you saw with your legs is common and part of " like the layers of an onion" analogy that is still said sometimes.

Thanks so much for your sharing, Trav!

I remember you mentioning some having their very first symptoms return just as they are nearing the end of their treatment and I'm hoping my herxes with post-novacaine-type feelings on the left side of my mouth indicate as such. That was my 3rd symptom to develop after the weird toe sensation and then fluid-retention-type feeling lol

Yikes at the challenges trying to describe the weird experiences Lyme and Co's bring upon us ;)
Posted 12/16/2015 8:15 PM (GMT 0)

Georgia Hunter said...
Cd's description explains the type of twitches I've had and sometimes still have. IMO, they are caused by separate issues and differing conditions.

You have to know, GH, that I won't let you get away with a comment like that without me asking you to expand on the topic.

How did twitches evolve for you? Did you have them pre-Lyme and Co's?

Mine all developed after starting treatment and I'm definitely curious to hear what you think might be causing them to linger. God knows I'm taking a LOT of stuff to heal, restore, whatever my nerves and their myelin sheaths.
Posted 12/16/2015 8:18 PM (GMT 0)

DHICKS19 said...
I get muscle twitches anywhere but the most annoying is my left eyelid
Sometimes I won't get any at all then some days my eyelid twitches all day long....

Eyelid twitches are so very annoying - so sorry you had to deal with this!

I can't say I've had any since the tick bite and you already know my stupid deal lol
Posted 12/16/2015 8:19 PM (GMT 0)

Girlie said...
Well, I had nary a twitch until lyme disease...again one of my first symptoms.

Lyme and Co's bestow upon us the weirdest "gifts" - eh? blech, really lol
Posted 12/16/2015 11:34 PM (GMT 0)
my twitches were just like mini - spasms. But when they first came on, I mean, they were roaring spasms and I couldn't sleep. I will never forget how scared I was, bc at this point I didn't know I had lyme yet, but I knew something was awefully wrong.
Posted 12/17/2015 10:27 AM (GMT 0)
Don't worry Trav, I know Lyme can cause twitches. I was differentiating between the internal bump, bump, bump compared to the muscle twitch you can see. One is smooth muscle, one is skeletal muscle. They are different and work on different pathways.

cd, I've had eye twitches for most of my life. They weren't common, but maybe a couple times a year. After treatment and changing my eating, I can't remember the last time I had a eye twitch but I do have muscle twitches once every week or two. i think I could do away with those if I ate correctly but I'm studying how far I can go with diet and remain healthy. I'm basically eating my way towards sickness in an attempt to find my sickness threshold. I'm getting close to the breaking point as my daughter and wife had a virus last week and both ran high temperatures and felt really bad. I did not get sick but I did get the virus. I was hunting one morning and my blood sugar plummeted when it should not have. I had eaten adequately but with the virus, it hit rock bottom. My GFR (glomerular filtration rate) increased that morning as it normally does with a viral infection and I urinated about 3 or 4 extra times that day.

I've posted on twitches before and think many are Mg/Ca and acetylcholine issues in most Lyme patients. The bump, bump, bump of our internal smooth muscle twitches is something else. It's more likely hormone or immune system mediated. I wish I was knowledgeable enough to go into a lot of detail but I don't have a lot of experience or research time on this one. I've spent most of my research time on skeletal muscle and not a ton of it. Twitches are a symptom, they're not the cause. I spend most of my time looking for the cause.
Posted 12/17/2015 1:27 PM (GMT 0)
Chapelle -

Thanks for your sharing! Your infections really came on with a *bang* and I'm so very sorry. However, I think you realize that you healed faster than most and I'm thrilled for you! Thanks for coming back here to post! Everyone benefits.

Georgia Hunter -

Thanks for your additional sharing! I remember your earlier posts and agree about the possible causes for visible twitches. I'd like to think the smooth muscle twitches are immune mediated and that might translate into a sign of healing for me ;)

Mister Mike -

Thanks for your posts! Yes, I started 1 drop of Lion's Mane TID on 11/17 and got up to 1/2 tsp TID by the end of the month. It might be helping.

I take soooo much stuff to help with my nerves/myelin sheaths since my issues always revolved around them that it's hard to give anything specific credit - perhaps I'm experiencing the benefit from herbal synergies.

I do know that my home-made Stephania is helping more with my Bells-Palsy-type herxes than WE's or SW's preparations.

Thank you very much for sharing the list of herbs/supplements that can help with nerve issues! I've been taking Ashwagandha, Avena Sativa, B1, B6, B12, BioSil (silica), Omega 3's for awhile and you already know about Lion's Mane.

Lemon Balm and St. Johnswort have the potential to lower thyroid function so I've shied away from them because I'm having enough trouble maintaining optimal thyroid levels as it is.

Never heard of Gotu Kola and will research. And, I will definitely check out the others to see if I might want to switch things around (again :)

I think the thing I need most at this point is patience....and time. After all, I really only started Buhner on August 1st with 1 drop of Cryptolepis while still following Cowden.....and I've only been up to full doses on everything since earlier this month.


Thanks again everyone for your contributions!!!
Posted 12/17/2015 6:21 PM (GMT 0)
HI CD, I have muscle twitches. They are becoming less and less though. Some times it is one area that is a continuous twitch for a minute or so. But mostly it is like my foot will move on its own. When I was really bad my head would jerk one way or the other. or my shoulder would move up and down really quick.

I have read that this can be one of the left over symptoms. Not a symptom of a current infection.

DB
Posted 12/17/2015 6:40 PM (GMT 0)
I had the quick twitches - sometimes in three different places...when I first got symptoms.

It was hard getting to sleep - left arm and leg twitching, muscle around the left rib twitching, and then my right leg would kick out every few minutes.

I remember at one point I had some twitches that were slower - and I could see them. The twitch would kind of get frozen...and then release...very strange.

What we go through....ridiculous stuff!
Posted 12/17/2015 7:29 PM (GMT 0)

Dancingbear* said...
HI CD, I have muscle twitches. They are becoming less and less though. Some times it is one area that is a continuous twitch for a minute or so. But mostly it is like my foot will move on its own. When I was really bad my head would jerk one way or the other. or my shoulder would move up and down really quick.

I have read that this can be one of the left over symptoms. Not a symptom of a current infection.

DB

Thanks for sharing, DB! So happy your twitches are becoming less. I can't imagine body parts moving due to a twitch - yikes!!

I, too, have read that twitches can be one of the left-over symptoms. However, I believe I am still infected because I still herx on occasion (and it's very, very mild but still...)
Posted 12/17/2015 7:31 PM (GMT 0)

Girlie said...
I had the quick twitches - sometimes in three different places...when I first got symptoms.

It was hard getting to sleep - left arm and leg twitching, muscle around the left rib twitching, and then my right leg would kick out every few minutes.

I remember at one point I had some twitches that were slower - and I could see them. The twitch would kind of get frozen...and then release...very strange.

What we go through....ridiculous stuff!

I cannot imagine dealing with these types of twitches, Girlie! So sorry you had to deal with them.

I've had my leg go totally numb when in bed (that hasn't happened in a really long while - like abx days lol)

Ridiculous is an understatement ;)
Posted 12/17/2015 8:00 PM (GMT 0)
cd,

I am seeing an alternative health care provider and talked with her regarding Herxes. So we all have toxins in our systems. Some are from Lyme, however, many can be from other things just from living. Like the toxins in our foods, or the toxins from metals, toxins from shampoo, soap, the air we breath, the water we drink, on and on.

So can detoxing from all of these other toxins cause a herx type reaction? Can the symptoms we associate with Lyme also be caused from other bacteria dying in us or other toxins (not from lyme) leaving your bodies? I now believe that they can.

I also do not agree with treating until ALL symptoms are gone for 2 months. I think we could be doing more damage than we think by treating too long. By treating something that does not need treating.

Just my 2 cents. Maybe you are no longer infected. I am not sure, but, I think that there has to be a time where we let our bodies take over and recover from the treatment. Who know's, maybe I am wrong. Time will tell.
Posted 12/17/2015 8:25 PM (GMT 0)
I do want to treat past active infection for a month at least....but the difficulty is what is active infection, and what is damage (for lack of a better word) - that just needs time to heal?

I don't think the Dr. can know for sure...I think it's up to us to try to evaluate....I'm not there yet...but have thought about it.

Will definitely do Buhner's herbs for months after...and slowly wean off...
Posted 12/17/2015 8:49 PM (GMT 0)
yes, I agree girlie, it is an individual decision and a hard one at that. That is why I said only time will tell. My doctor nor I can tell for sure.
Posted 12/18/2015 12:45 AM (GMT 0)
Well I do hope that you will let us know when you do believe you are healed! I love hearing when our members have stopped treatment and are doing well!

There is actually very little dispute between most Lyme patients (online anyway) about toxins causing symptoms any more - thankfully.

As for treating 2 months past the time of symptom resolution - herbs are best for this, as they won't harm you like abx, but even if the person were using abx, a relapse because of coming off of treatment too soon is hard to handle, so for many it's best to just stay in treatment for a few more weeks - but as you have said, it's all an individual decision to be made.

I hope your healing "sticks", Dancingbear!!
Posted 12/18/2015 9:45 AM (GMT 0)

Dancingbear* said...
cd,

I am seeing an alternative health care provider and talked with her regarding Herxes. So we all have toxins in our systems. Some are from Lyme, however, many can be from other things just from living. Like the toxins in our foods, or the toxins from metals, toxins from shampoo, soap, the air we breath, the water we drink, on and on.

So can detoxing from all of these other toxins cause a herx type reaction? Can the symptoms we associate with Lyme also be caused from other bacteria dying in us or other toxins (not from lyme) leaving your bodies? I now believe that they can.

This is 100% true DB and needs to be emphasized. Toxins in our environment contribute to our issues, it is a cumulative effect. Borrelia and the other bacteria add to the problem and are often the straw that broke the camel's back. We can also have H pylori, Staph, Strep, Prevotella, candida, babesia, protomyxzoa, pseudomonas, klebsiella, clostridia, trichomonas, e coli, shigella, neisseria, salmonella, bacillus, mycoplasma, listeria, and there are thousands more. All of these can cause us problems and when combined, they do much more damage. And I didn't even mention but a couple of the tick borne pathogens that many of us are suffering from.
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