Who here is "done" w/ treatment but still has muscle twitches?

As an example, IIRC, Chapelle has been done with treatment for almost a year now but still has some muscle twitching. It seems to be the last symptom to "heal" for a lot of folks. My doctor is stepping down my treatment and although my twitching has gotten significantly better, I still get them. It is my belief that this could vvery well be the nervs healing and not an active infection. Chapelle, does your twitching continue to improve even being off of abx? Anyone else care to chime in?

My LLMD wanted me to consider stopping all treatment next month and "let (my) immune system take over".

I'm always curious what motivates LLMD's to say this when the patient still has some symptoms (always mild for sure)....especially when those LLMD's are ILADS-trained. There must be some defining factor for them (I'd hope anyway ;)

Do you herx anymore?

Would you share just how your doctor is stepping your treatment down?

Thanks for the replies.

Other than twitches, I don't really have any other symptoms. A very occasional mild leg ache and maybe a frontal lobe headache every now and then. If I did not know I was bit by a tick, I would attribute the other symptoms to normal aches and pains.

And CD, to answer your questions, I do not herx but I never really have....I started abx 6 weeks after a known tick bite so I don't think my bacterial load was the great to begin with.

I see Dr. J in DC, and for my "stepping down" protocol, he has me taking an abx cocktail only on the first 3 days of each month, with xylotol/lactoferrin. I am VERY much looking forward to this, as I think my body needs a break from all the abx toxins (liver). I also no longer need draw blood every 3-4 weeks!

Fronton said...
And CD, to answer your questions, I do not herx but I never really have....I started abx 6 weeks after a known tick bite so I don't think my bacterial load was the great to begin with.

I see Dr. J in DC, and for my "stepping down" protocol, he has me taking an abx cocktail only on the first 3 days of each month, with xylotol/lactoferrin. I am VERY much looking forward to this, as I think my body needs a break from all the abx toxins (liver). I also no longer need draw blood every 3-4 weeks!

Thank you for sharing this!

You and I obviously joined this forum around the same time. My signature tells my story but it's been clear to me for a long time that my ILADS-trained LLMD is very much unlike Dr. J. Good for you and who knows about me lol

My LLMD just did not prescribe aggressive abx for me nor has he ever thought I was dealing with more than Lyme (and I think I have been).

I didn't really have much by way of symptoms after the tick bite and by the time I met my LLMD 8 wks. later and started better treatment than what my PCP prescribed after the tick bite. I have definitely herxed quite a bit (but nowhere near what some people go through).

The fact that you haven't really herxed could be a sign of a low bug load and/or an efficiently-detoxing body.

Would you kindly share how muscle twitches manifest for you and just how frequent they are?

No matter what, I am thrilled that you are thisclose to full healing and wish you the utmost best!!!

Dr. J really seems to know what he's doing and I wish you the absolute best in what looks to be the final leg of your journey!

Please keep us posted.

Thanks everyone. cd, my twitches honestly hit me like a freight train about 4 weeks after being bit - It was not at all gradual. Paired with the twitching, I had myoclonic jerks and night (aka sleep starts, aka hypnic jerks). It was very bad.

My twitches I have now are less frequent. They can happen anywhere, and you can see the skin move.

I do have to note something on here I noticed yesterday. I had a headache in the morning (drank too much wine night before), and after taking some Ibuprofen, I almost had no twitching for the rest of the day. I wonder if that indicates inflammation of the nervous system (leftover damage) as I am still "healing".

Have you ever tried Japanese Knotweed, Fronton? It's great for inflammation.

Did/does Dr. J have you taking things to support your body, for immune support and/or for inflammation? Somehow, I think the answer is "yes" but would appreciate you sharing.