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Posted 12/27/2012 11:53 PM (GMT 0)
Hi. New to this forum. 4 years ago. Came back from the woods and had a rash on my stomach. Doctors. Thought nothing of it Over 2 years later I one day . Started with constant widespread muscle twitch. 3 neg Eliza. With only some positive bands ..7 clean emgs and a clean MRI . I have suffered from widespread muscle fasciculations for over 1 and 1/2 years. Feet /hands /face /back. /Calves /legs. You name it ,I finally Took the borrelia culture test. And it was positive. And am currently being treated 3 rd month of I V. Abxs. Twitching is my main symptom. Does anyone else have a similar experience or twitching. If so. Please let me know you very much Lou

Post Edited (Lou5342) : 12/27/2012 5:08:04 PM (GMT-7)

Posted 12/28/2012 12:19 AM (GMT 0)
Yes, I have twitching. It's one of my primary symptoms. I can take massive amounts of magnesium and sometimes that doesn't even help to control it. I'm constantly dropping things and it's starting to spread into my face which makes me very self-conscious.

I have Lyme and several co-infections. I'm on oral antibiotics. Hopefully it will go away for both of us soon. Glutathione IV's help my twitching but the positive effects are short-lived. However, if you have a PICC you might be able to do them yourself.
Posted 12/28/2012 12:27 AM (GMT 0)
Thank you summer3 I just started on the glutathione oral this week. And I self administer 2 mag shots a week. I average 2000 muscle fasics a day. Since starting. I v. I get. One two days of a couple of hundred. Then back to a couple of thousand. Will ask about glutathione shots. Thank again lou
Posted 12/28/2012 2:26 AM (GMT 0)
I have muscle twitching all over. My LLMD says that it will improve, along w/ all of my other symptoms, the further I get in to treatment. I'm 4 months in to treatment. The twitching comes and goes for me. When I'm feeling fairly decent, I don't have much twitching. When I'm really ill/flaring, I have it all over. I have Lyme and Bartonella.
Posted 12/28/2012 5:03 AM (GMT 0)
Thanks mystery. And summer
Posted 12/28/2012 10:58 AM (GMT 0)
Wow that's a lot of twitches Lou. I didn't know you could do magnesium shots at home. I'm up to 2-3g per day of magnesium citrate and malate and sometimes that doesn't even work. I hope you are able to try glutathione IV. It's so tremendously helpful for me. It literally is the only thing that gives me reliable relief from symptoms but I wish it would last longer than 1-2 days.
Posted 12/28/2012 11:32 AM (GMT 0)
Twitching and fatigue are the only symtoms I cand seem to treat. but I have learned mine follows high stress. when life is punching me in the face, before long here comes the fatigue and twitching.
the only positive thing about lyme is it makes me slow down and hunt for a better way to live!
Posted 12/28/2012 1:47 PM (GMT 0)
Hi Lou!
Welcome to our community! I'm so sorry to hear about what you are going through - although I am glad that you found us!

If you haven't already, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists (as Lyme rarely occurs by itself), helpful links and pdf's, how to detox when one has these infections, and a list of questions that you can ask any doctor that you are seeking treatment from!

We also have a pretty good search function on this forum to help you narrow down your search for information from past posts. We must be our own health advocates now and the best thing to arm yourself with is knowledge about our infections and the different ways to treat them!

I too had a lot of muscle twitching. Time in treatment, detoxing, and gentle stretching/exercise are what helped me the most. Are you detoxing? That can be a huge benefit for most people with these infections. As I mentioned above, we have our recommendations for detoxing in our "New to Lyme?" thread, 2nd post, about 1/2 way through.

Another thing that I've learned that helps those muscle issues is to stay away from lemon, lemon juice solids in foods, pickles, pickle relish and all other pickled foods. They increase the muscle twitches/spasms/cramps. Seems too easy, but it really makes a difference!
Posted 12/28/2012 3:33 PM (GMT 0)
Much appreciated info Traveler. Thanks

Post Edited (Lou5342) : 12/28/2012 10:00:50 AM (GMT-7)

Posted 12/28/2012 3:44 PM (GMT 0)
You're welcome! smilewinkgrin Please let us know how you decide to proceed! We are always curious about different treatments!
Posted 12/28/2012 5:00 PM (GMT 0)
Will do traveler. I am goin try Throw whatever I can at it. If it weren't for the positive Borrelia culture test from advanced labs I would never think it was Lyme. This site is the first time I've heard of anyone with similiar symptoms I actually video taped hundreds of muscle fasicultions for dr s to see. As you know many of them didn't believe they were real
Posted 12/28/2012 6:01 PM (GMT 0)
Yep! Common for doc's to think it's all in our heads when it comes to these infections! I was turned away from every dr's office in my rural area when I was first trying to find help. I was told that "We aren't up to taking on such a complicated case at this time" - what BS!

Do be careful to not throw too many things at your symptoms all at once, and do start each thing slowly, giving several days in between so that if you have a reaction, you will know right away what you reacted to.
Posted 12/28/2012 6:10 PM (GMT 0)
Good advice traveler. Believe me youget the same reaction from many drs in the big cities

Post Edited (Lou5342) : 12/28/2012 5:30:27 PM (GMT-7)

Posted 12/28/2012 7:53 PM (GMT 0)
Twitching was my very first symptoms and has progressed and is now the most annoying one! I remember on one of my old abx I had non stop twitching for 3 days! Drove me crazy.
Posted 12/28/2012 9:24 PM (GMT 0)
I was almost grateful for my fasciculations when I was pre-diagnosis, as they were at least something objectively visible that I could demonstrate to doctors. Its hard to be grateful about something that annoying and odd (I got them in my belly alot, which looked a little like the start of the chest-eruption scene in Alien), but I'm sure others know what I mean.

At their worst, I would be awake for days. I describe sleeping with heavy twitches like someone tapping you on the shoulder/tricep/calf/back/etc at random intervals all night long. Occasionally one spot would go crazy and twitch almost constantly for hours on end. There's no way to fall asleep other than to just eventually collapse.

I got a chuckle when I read that you recorded them; I also resorted to shooting high-def videos of bizarre twitches. I had a neurologist telling me I was crazy, then I brought him a video of my collarbone twitching and asked how precisely one might bounce that particular muscle without moving anything else... he then modified his opinion to benign fasciculation syndrome, which was magically unrelated to all my other magically unrelated non-diagnoses like fibromyalgia, chronic fatigue syndrome and idiopathic neuropathy.

A few months on IV Rocephin and they were reduced about 90%, along with most everything else. They occasionally flare with the rest of my symptoms, but its nothing that keeps me up for days anymore.
Posted 12/29/2012 12:28 AM (GMT 0)
Wow. Thanks spall. You described my twiches exactly. Mine appeared 18 months ago. Suddenly. With no let up. Not one day The only difference now is I will get a few days in a row of 80 pct less twiches. While on the abx. But. Then back to lots of twitching
Posted 12/29/2012 1:12 AM (GMT 0)
Yes, even in big cities, we're often treated like we're nuts. I was told by many Drs. that everyone gets muscle twitches and that it was benign. What a load of crap. Everyone does NOT get hundreds of muscle twitched a day all over their body and it's not benign when there are tons of other neuro. symptoms to go w/ it.
Posted 12/30/2012 4:23 PM (GMT 0)
Great responses thanks. Are any of you able to trigger twitching by rubbing the affect limb or area or tapping it ? i can cause fasiculations bt tapping. Or vigorously rubbing the calf bicep. Leg ect... Also do any of you have the sensation of small jumps in some areas.?? Toes. Fingers. Ect...

Post Edited (Lou5342) : 12/30/2012 1:38:08 PM (GMT-7)

Posted 1/1/2013 7:36 PM (GMT 0)
Interesting. And yet you suffered the twitching prior to staring I V No doubt there is a correlation between the meds and the twitching... I have been twitching for 19 months. And only this past few days. I have gone from a few thousand a day to a few hundred.. Today I had some huge twitches. felt like it actually grips the muscle hamstring for a few seconds and lets go. Also tip of the tougue has been going. I am on rocephine 4 months Thanks
Posted 1/2/2013 1:06 AM (GMT 0)
Thanks Brian. I too just started with 4 grams However. It is dosed all at once. I wonder if I shoulask dr to change to 2 grams. Twice daily instead.
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