Involuntary Noises, anyone else?

New here. Been sick with Neuro Lyme & Co's for 2+ decades. Been treating (the second time around) for the past year & a half. (thought I was over it in the past but after some big stressors in 2016 it totally nailed me again)...


I am VERY affected in the brain & neurologically. For the past year of my latest treatment sprint, I developed involuntary noises coming out of my mouth...it is so embarassing. Never had them the first 6 months of treatment. They started out as loud quick noises that sound like I was getting very startled by something. Now they've turned into this low loud growling sound. My Lyme Dr that I was working with last year told me that he's seen this in some other patients and that it's unfortunately a part of herxing/die-off, especially with Bartonella (which I have bad).


My body is going at turtle pace with treatment, detoxing, etc and now a year later I am STILL dealing with this issue. Sometimes detoxing takes it away, sometimes it brings it out, sometimes treatment takes it away, sometimes it brings it out with herxes....it's a total confusing mess and EXTREMELY frustrating because sometimes I get caught in these 'waves' of it where it just won't stop, sometimes for hours at a time....it's almost constant, loud and totally disrupting to me and my family. I have so many awful neuro-rocking-pusling sensations from the infections, treatment and detoxing and rage/irritability, seizure-type symptoms etc and this sound comes out when all those rocking-pulsing symptoms, etc are super-strong and going haywire.


My current VERY experienced Lyme Dr has never seen someone this bad with these sounds...she's seen this but not as bad as I have it currently. She said it must be bronchial spasms...gave me a Mag IV for it and it did absolutely nothing, didn't stop it. Put me on Klonopin because I was so desperate, I got caught in a few week period where the noises wouldn't stop from morning till night...that helps calm it down sometimes and other times doesn't at all.


My question is... I am going CRAZY thinking I am the only Lymie out there with this massive life-disrupting problem. All my other symptoms are totally life-altering where I'm a house-hermit but this is even more isolating because I don't want to be around anyone other than super-close family when it's bad. I am a people-person and it's like I have to avoid the world because of it. I have read only a couple posts on other lyme forms of some people making involuntary noises but I can't imagine anyone gets it this bad like I do??? I've been avoiding posting this because I'm afraid no-one will be able to relate to it.


Does anyone else out there have bad involuntary noises from treatment and/or detoxing?? Is it just part of this awful healing process for ANY of you? Even on days where I could go into a store with my mom to shop b/c my physical strength is now kinda better than before (before I couldn't walk at all), I can't because of the noises...even when I'm quiet I never know when it will rev up again. My mom who has been by my side this whole time through this is telling me it will go away eventually as I continue to heal and it's just unfortunately part of this whole mess for me. She says even though my Dr has never seen it this bad, all that means is my body is unique but I will still get over this. I just don't know. I wish I could find a magic switch to turn it off.


I've seen people on YouTube who have vocal tics with Lyme and I'm assuming it's just a bigger form of that with me but sometimes it just won't freaking stop...day after day after day. This morning it wouldn't stop, loud and driving me insane while I was feeling all the rocking/pulsing/rage stuff I get from Bart and Bart die-off, etc. Then I just took some Chlorophyll and I'm quiet. And back and forth and back and forth I go. There is no rhyme or reason to it. PLEASE tell me I'm not the only one or you have at least heard of others go through this!!!! I feel so alone in this as a chronic Lymie.


I think it is related to the toxins somehow, I'm a slow-crappy detoxer. On days where overall my symptoms are dialed back, the noises are sometimes dialed back more.

Post Edited (carolynjc) : 9/10/2018 4:00:35 PM (GMT-6)

Hi goshawk,

Thank you for taking the time to reply to me. I have heard of the temporary tourette's symptoms with lyme, I'm not sure if that's what this is or if it's related to my detoxing issues.

I am on a really good protocol with a knowledgeable llmd. I definitely have no problem killing these infections. My treatment kills it; I'm just a constant herxer and have never been able to consistently stay on treatment...I push through treatment for a bit and then have to take a break. I was on antibiotics my whole life, before and after chronic lyme. Unfortunately they destroyed my gut so I have to treat 100% natural now and work on healing my gut too.

I did get a genetic test and am honestly a bit confused over the results. I've listed what I'm seeing on my report below. Last year I went to a genetic expert. She told me I definitely have detox issues. She said I needed glutathione. I started a small oral dose of the glut and after a couple of weeks on it, I completely fell apart. I had to stop the glut and it hammered me so much it took me 5 months to come out of it. I really need the guidance of a genetic expert but it's impossible in the past several months to make an appointment with these very disruptive noises. It would cause a scene and I would struggle even talking to the person when it's bad.

I've had three things that made me totally debilitated and completely stopped my forward progress. The first was the glutathione. The second was something I never saw coming...I was starting to make progress on my llmd's protocol. I ordered a healing gemstone necklace that was meant to "gently" detox the body. I wore it for 2 days and went from being able to function in my house to barely able to crawl to the bathroom, total debilitation and physical and brain torture. After the necklace I had to stop treatment for months because I was herxing so severely on the tiniest dose of anything. The detoxing methods that I was using prior to the necklace were also unbearable. I had to slowly push through detox-hell for months until I came out of "necklace mode."

After the necklace bomb subsided I was able to resume treatment and detoxing slowly and was back on a path. Part of my detoxing was rubbing castor oil on my liver throughout the day. I decided to try a castor oil pack, this was bomb number three. This completely threw me off the rails; couldn't handle treatment or detoxing for 2 1/2 months. My llmd had me start with 1 drop of chlorophyll every other day to try and slowly detox because her theory was that the castor oil pack threw off so many toxins that I was overloaded with them. It's just a big mess, on treatment, off treatment, noises can be very violent on a daily basis and so much physical and brain suffering. My llmd doesn't seem to be very knowledgeable about genetics. It's really hard for me to even get to her, so if anyone here can shed some light it would mean everything to me. The problem is, someone could tell me after seeing my genetic report that I need to take a certain supplement and it could set me off on bomb number 4. This is an awful situation. I don't know if my genetics are playing a role, or if I'm just a slow detoxer and have to stop and start and stop and start and just recover a lot slower than others.

This would be a lot easier if I could email someone my genetic report or attach it here, but I don't see a way to do that. I'll just list the highlighted genes from my report and what it says next to each one. The report is from pure encapsulations and recommends supplements next to the different gene mutations. The genetic expert I met with last year said I have methylation issues and blocked detox pathways.

The genetic report I'm looking at assigns a color to each gene mutation...green, yellow or red. I'm assuming the yellow means I am most likely dealing with the issue?

YELLOW:

CBS, C699T - Higher conversions of homocysteine or cystathionine

COMT, V158M - Reduced detoxification of catecholamines and estrogen

FUT2, G772A - Modified risk of low B12 status; potential for lower intestinal microbial diversity

MTHFR, A1298C - Reduced ability to activate folates to 5-MTHF

MTR, A2756G - Potential B12 depletion

BCMO1, A379V - Reduced ability to convert dietary beta-carotene to active vitamin A

GSTP1, I105V - Reduced ability to conjugate certain toxins with glutathione

MTHFR, A1298C - Reduced ability to activate folates to 5-MTHF


My current detox methods:

G.I. Detox, sometimes I use Bentonite Clay instead or charcoal
Chlorophyll
Milk Thistle Tea
Dandelion Root Tea
Detox salt foot baths
Detox foot pads
Wahls Diet, which I know is helpful for detoxing
Dry skin brushing
Lemon oil
Rub castor oil on my liver throughout the day - cannot do pack

Just purchased and going to experiment with:

Burbur/Pinella
Neuro-Antitox II (I was told by the genetic expert last year that I have an issue with ammonia. I know ammonia is a big issue and I read that growling respirations can come from excess ammonia)

It seems like any time I try to help my liver beyond a tea or rubbing castor on it, I bomb out. I'm wondering about starting a capsule of milk thistle, but don't know if it would be too much for me.

Thank you so much, I appreciate your time.

Carolyn