HELP! Twitching and related anxiety is destroying me!

Hi everyone. I'm having some serious panic attacks and anxiety over my ongoing twitching. (I have a previous PTSD diagnosis.) To recap, I had visual exposure to multiple ticks on 6/30, swollen elbow 7/6, possible rash at the end of July (didn't recognize it but did report it to my doctor as skin irritation from clothing), and world rocked by twitching, electric shocks, migrating muscle and joint pain on 7/21. ER put me on doxy where I improved for about 10 days until I stupidly drank alcohol and most symptoms came roaring back. Unfortunately did not recover previous level of functioning. Began treating with a LLMD in September. (thank you this board!!!). Just finished 70th day of doxy, taking a break for my gut, starting Buhner next week.
My issue is MY CONSTANT MUSCLE TWITCHING. I thought I was recovering slowly but recognizably 2 weeks ago but woke up 7 days ago at 5 in the morning with twitching rampage.This has continued for a week. Blood work showed myelin antibodies so I'm terrified my immune system has turned on me. My LLMD gave me a very good prognosis overall and thought the results just showed neurological inflammation. She saw an elevated shingles count in the work and also thinks that's a factor.
My question is how common is this? Realistically, a lot of my symptoms have receded (arthritic pain in morning, severe migrating muscle pain) but the twitching has always been the most concerning. Right now, it is clearly the biggest problem. I have some minor thumb soreness and finger aches and modest muscle pain (I think mostly related to soreness from twitching)(no discernible weakness anywhere) but otherwise I have seen some improvement. I'm simply concerned that the neurological symptoms won't go away. Is there any evidence that they go last. Has anyone had similar symptoms or experience?
I'm not sure if my paranoia is from my PTSD, a symptom of Lyme or just because I'm generally psychologically exhausted from this.
Thanks. This board has been a life saver. I don't know where I would be without it!

I started getting muscle twitching a little over a year ago (last September and in the same week I was done with my 4 week Doxy prescription) and was also very concerned until I started doing a little more research and found that not only is twitching fairly common for people with Lyme, but also common for healthy people as well. It's really not this super sinister thing that Dr. Google might have you believe and should get better over time. Just remember, ANXIETY MAKES IT WORSE! It's not going to go away overnight so try not to worry about it so much and see how you feel in a few weeks.

I have twitching muscles. When I sit down they'll start up. They'll twitch for a few seconds then stop. It's throughout the day but comes and goes. Varies in my arms legs, toes, calves, shoulders...no muscle/extremity is off limits.

Then I'll have episodes of localized twitching in a muscle.

Then I've had weakness, tingles, numbness, but no paralysis, thankfully.

When I had an EMG five years ago, my neuro said my exam was normal. My neuro now said he didn't think I needed one anytime soon. I tested IgM pos for Lyme in 2014 and IgG pos 18 this past summer.

My symptoms coincide with Cat Scratch Fever.

Post Edited (ElizKA26) : 10/31/2019 2:33:57 PM (GMT-6)

“I wholeheartedly disagree with Burghson's comments and others like it that try to insinuate twitching is self inflicted/ anxiety related and could or should be ignored or will go away with positive thinking. Healthy people do have an occasional twitch. Healthy people do not have constant or nearly constant twitching daily for months on end that interfere with functioning.”

I agree totally.

I don’t think I mentioned - EMG and NCS all normal

I had muscle twitching as one of first symptoms years ago, and many years before diagnosis. It created a worst case scenario in my mind, which lead to anxiety.

Though twitches have been gone for a long time, except for occasional ones, still deal with anxiety. It seems to be induced by Lyme or co-infection. All this can make a person very worried, and when you aren't really sure what it might be, that worry is warranted.

Thanks everyone. It is sometimes difficult to know what is real and what is imaginary. I think having gone through this for such a period of time now I’m just mentally exhausted which exacerbates any underlying issue. I'm obviously retreating into worst-case scenario pretty much 24 7 at this point despite my LL MDs suggestion that my prognosis was actually pretty good. I’ve lost 25 pounds over the past 3 months and I think a lot of that is simply due to stress. I really wish there was a good place to get psychological counseling for everything related to this condition.

I searched the forum and found several posts indicating twitching was the last symptom to resolve. Of course, as soon as I write that I get a flare of migrating muscle pain and pain in my thumb. Just to remind me that whatever this is, is still here and kicking my ass.
I have noticed the CALM magnesium drink seems to modestly reduce the twitching. However it does contribute to diarrhea, which is always a concern when one is on antibiotics. Despite this, I think I’ll take running to the bathroom over constant twitching. On my LL M.D. suggestion I’m adding magnesium threonate. I’m hoping this will provide some relief.

I’m not sure whether I should restart the doxycycline next week after my little break or if I should try a different antibiotic with the herbals, or even just forgo antibiotics at this point after roughly 70 days.

"I wholeheartedly disagree with Burghson's comments and others like it that try to insinuate twitching is self inflicted/ anxiety related and could or should be ignored or will go away with positive thinking. Healthy people do have an occasional twitch. Healthy people do not have constant or nearly constant twitching daily for months on end that interfere with functioning."

I was absolutely not insinuating that stress/anxiety were the cause of twitching in this case. I simply said that stress can and most often does make it worse. I was also not insinuating that you can hope and wish this symptom away or that treatment isn't necessary (The OP stated he was seeing an LLMD so I assumed they were treating it). The only thing they can do is keep working with their doctor and see how they feel over time.

I'm also not sure how you state that healthy people can't have persistent twitching while also talking about BFS earlier in your post? That's exactly what BFS is... a benign condition that causes muscle twitching in otherwise healthy people. Obviously this isn't the cause of our twitching, but I wanted HumanConclusion to know that twitching, in and of itself, is not uncommon and effects a lot of people in a lot of different ways.

Regardless, the main point of my post was to try to bring some reassurance to the OP (because I'm pretty sure I understand what he's so worried about) and let him know that many of us have gone down the same road and are doing better. That's all.

I wouldn’t put buzzing, tremors or shaking into the twitching/fasciculation group.
It’s an involuntary contraction of the muscle.
Sometimes it can even be seen.

Yup - I also had the buzzing, vibrating and tremors

The tremors were the first to go.
Vibrating happens now and then.
The buzzing is still happening most days in my right leg.

The fasciculations resolved but every now and then they come back mildly for a day.

The emg and ncs are used to diagnose ALS