Twitching

Given all you have tried biochemically and immunologically, I think that I would try bodywork, physical therapy, and/or acupuncture next. Nerve flossing, traditional PT, trigger point therapy, dry needling, acupuncture, etc. Have you tried any of those things?

Has anything ever decreased the twitching? Is it 24/7? Do the muscles jerk visibly?

My first guess is that it's a nerve problem, and if it's bilateral, then the nerves that are being irritated could originate in your lower spine. Personally, I would see a craniosacral therapist with a PT background or chiropractic background, so they can check out the lower spinal nerves for you and see if there's a physical issue causing the nerves to misfire. They also might be able to palpate the area and see if there is tightness in a ligament or muscle that could be causing the dysfunction, directly or indirectly.

Do you stretch out your feet and calves for a few minutes a few times per day?

What is the position of your feet and ankles when you sleep?

This post actually caught my eye because about a year ago I started having twitching and pulled muscles in my calves and big toes. Drove me crazy because I couldn't figure out why. What I figured out eventually was that my firm mattress and heavy comforter were pressing my feet and ankles into a pointed-toes position all night, so the ligaments got tighter and tighter over time until I started stretching them out regularly. In the process I also figured out that my hamstrings and arches were incredibly tight - so tight they didn't even feel tight anymore, just restricted my range of motion - so I've been gradually working on those issues. I'm not saying this is what's going on with you, just another thought.

For supplements, I would suggest the following, although I imagine you've already tried a lot: lion's mane mushroom, calcium, CBD or other cannabis preparations, curcumin, omega 3 fatty acids (from algae, flax, or fish). An anti-inflammatory diet could have an effect, but I don't know how direct that effect might be.

Do you have other symptoms as well these days, or is this your primary symptom?

Pre diagnosis and treatment I twitched all the time - mostly the arms.

When it was really bad - I could see the muscles in my arms twitching.

My bad side (left) twitched more than my right.

It went away with treatment and time.

I also had the EMG and NCS done by a Physiatrist.

Did you ever treat Babesia with strong antimalarials - ie Mepron or Malarone?

Some llmds/llnds say you need to treat Babesia first and then do bart after. Although when treating Babesia - were also treating with Lyme antibiotics - and some Lyme abx also do work on Bartonella too.

But you did treat Babesia already

You mentioned Rifampin.

What about Rifabutin?

I treated bart with Rifampin with my llnd.

A few years later Dr J treated bart/Persisters - but with Rifabutin instead.

If you haven’t already - I would ask your dr to prescribe a few months of Rifabutin (paired with one or two additional abx)

https://www.livestrong.com/article/511834-vitamin-deficiency-with-muscle-twitches/

https://www.chronicbodypain.net/muscle-twitching-what-vitamin-are-you-missing/

I had a pretty severe b12 deficiency a few years ago, level of 50. The doctors couldn’t believe I was still walking around. The symptoms are pretty similar to Lyme disease and there’s also a lack of knowledge about it, as I found out at the time. I’m on injections for it now. It is possible that’s my b12 deficiency has caused this twitching and it could be nerve damage.

I haven’t tried Rifabutin, isn’t it the same class of antibiotic as Rifampin though? I’m from the UK and heard Rifabutin is pretty impossible to get over here. I’ll ask next time I see my doctor but I’m pretty reluctant to start more combination antibiotics now, as I’ve been on them for 3 years and it’s totally wrecked my gut. I’ll run it by him next time I speak to him though.

Hi Allen,

Twitching use to be one of my worst symptoms. I had it all over my body. I had tried lots of treatments but nothing helped until I did five months of Mepron/Azithromycin for Babesia. This made a HUGE difference with the twitching. It was probably around the three month mark of taking Mepron that my twitching became less frequent and less severe and by the the five month mark it was basically gone. That was almost a year and a half ago and there is still no twitching. For what it is worth, I didn’t have the some of the common Babesia symptoms (I.e. night sweats) so doctors just assumed I didn’t have it. I thankfully ended up seeing a doctor who insisted I get tested for Babesia and it turned out that I did have it. My Igenex FISH test came back positive. Getting the Babesia treatment improved not only the twitching but so many other terrible symptoms. If you are able to, getting a Babesia FISH test may be worthwhile.

KellyR said...
Hi Allen,

Twitching use to be one of my worst symptoms. I had it all over my body. I had tried lots of treatments but nothing helped until I did five months of Mepron/Azithromycin for Babesia. This made a HUGE difference with the twitching. It was probably around the three month mark of taking Mepron that my twitching became less frequent and less severe and by the the five month mark it was basically gone. That was almost a year and a half ago and there is still no twitching. For what it is worth, I didn’t have the some of the common Babesia symptoms (I.e. night sweats) so doctors just assumed I didn’t have it. I thankfully ended up seeing a doctor who insisted I get tested for Babesia and it turned out that I did have it. My Igenex FISH test came back positive. Getting the Babesia treatment improved not only the twitching but so many other terrible symptoms. If you are able to, getting a Babesia FISH test may be worthwhile.

Hey Kelly,

I already treated Babesia at the start of my treatment with Azithromycin and Malarone, it didn’t touch the twitching at all. My doctor is treating me for it again, next week, at end of treatment just to make sure it’s gone.

have you ever done a couple weeks of anti parasite meds?if not its worth a try

Allen - I have twitching as my last symptom too. about a year ago it was basically non stop in my calves (not foot arches though). Now it is maybe 10 twitches at random a day, which is not bad at all. Still treating to try and completely get rid of before I go off of abx. I will say that I race bicycles and it’s way worse in my legs after a long hard ride. Super annoying!