Finally starting figure it out

So I've been dealing with the off-balance, off-kelter wonky feeling for about a month now.

I've experienced this symptom a couple of different times in the 2.5 years with lyme, but this is the longest most persistent episode. In the past, simply treating lyme resolved the issue. Another time it was properly neuro-detoxing. But this time, none of these things are helping. So I really starting closely monitoring and noting my symptoms and everything that is occurring and when, to try and find a pattern.

Observations over the last month:

1. facial, skull wasting - fat and collagen loss. Muscle reduction/changing in structure (not necessarily loss). My temporalis muscle (which pretty much expands the entire side of the head) has changed it's structure. Meaning enlarged in some areas while receding in other areas.

2. Clicking of left jaw muscle when hyper extending the jaw

3. The jaw muscle right over the temple, while still very much there and flares up according while chewing recedes into the skull much more than it probably should when hyper extending the jaw.

4. further loss of fat and collagen (not muscle) near temple, forehead, and brow ridge. This sucks because it' makes my forehead look bigger as you now can see the frontal bones and orbs a bit more. Not more than anyone else with very little body fat but still strange because it's like looking at a new face I got to get use to seeing now. Which unfortunately is not a new thing, for my face has "changed" several times since getting lyme, kind of "use to it" now.

5. Now the part that connects the symptoms above with my diagnosis:

The symptoms get worse after eating. For the longest time I thought it was something I was eating and it may be a gut issue. However, there was no rhyme or reason to it. I could eat the healthiest meal possible and it would still flare. Then it finally hit me (because of all the other symptoms), what if it's not WHAT I'm eating but the simple fact that I AM eating, meaning chewing.

Then I researched TMJ (as the other symptoms match) and sure enough TMJ and chewing can cause the dizziness, off-kelter, wonky feeling for multiple reasons.

Link: /www.medcentertmj.com/tmj-disorder-causes-treatments/could-your-tmj-disorder-cause-dizziness/

Information online plus anectodal evidence for other's with TMJ online experiencing the same thing, helps connect the dots for me.

Now I know TMJ is a phenomonen/symptom and NOT a root cause. I'm fully aware lyme and co directly or indirectly can create TMJ/D.

*whew*, so with all that said, like with many things with lyme when one "figures it out", what do I freaking do now? I don't want further muscle dysfunction and wonky dizziness to occur after I eat (for 1 to 2 hours) every single time.

For those lymies that have experienced TMJ/D and resolved it I would love your insight.

Thanks.

ArtAngel said...
Would love to help. I have experienced the same thing but it has gone now. I don't know what was causing it and it was seriously worrying me. What has changed since is that I have hit the lyme and mycoplasma and got really vigilent about detoxing.
I hope someone has some advice for you..............all the best

If you don't mind can you explain a bit more detailed all your TMJ/D like symptoms you once had? Thanks.

I have no help really, just can relate.

My symptoms started in 2009. For several weeks, I had that wonky feeling in the head that I described to doctors as an "off" feeling in my head. It wasn't dizzyness or lightheadedness. It just felt like something was off kilter in my head. It was so bad for 2 weeks that I couldn't watch TV or drive. When I tried to drive, I felt like if whatever it was in my head that was off kelter went even a hairs breadth further off kilter, that I would lose control of my whole body. I envisioned my head spinning around and flying off like The Exorcist or something. It was very worrisome.

The worst of it lasted 2 weeks. After that, as the months and years went by, it would reappear fleetingly (thank God) and go away. It has never kept me from driving again.

All that was years before I knew I had Lyme or started treatment. There have been times during heavy herxing that I've felt it again, but in a different sort of way - more like being off balance.

I haven't had TMJ popping sensations, but did have tightness in the jaw joint that comes and goes.

I haven't noticed structural changes in my head specifically, but I did in my body. I was diagnosed with CIRS from mold and lost over 20 lbs. My body morphed multiple times from late 2016 to late 2017.
There were times I didn't recognize my own body, and it wasn't just because of the weight loss. I had weighed the same thing 20 years ago as well as in my teens, and my body had never looked like that before.

Most of this "morphing" occurred while detoxing mold before starting Lyme treatment.

I had TMJ come on briefly out of the blue about 10 mo into treatment. It resolved itself after about two weeks. I guess it kinda resembled all the other 'pains' I experienced that would show up and disappear.

Descarte - sorry about the late reply.
My symptoms were mostly feeling off balance. I would think I was walking straight and crash into the walls going down the hallway. In those days I was almost bedbound. My concentration and memory was bad too. My jaw hurt and there there a serious clicking sound mainly on one side and in the evening it would be sore and aching.
I did try the TMJ treatment kinesiologists here in Melbourne Australia do but I only got temporary relief. I did notice I got a temporary increase sense of wellbeing and energy with the treatment but as I said it didn't seem to hold, over time so I didn't find any short term solutions.
Now there is a slight amount of clicking sometimes on the left handside (with non of the intensity that was there before), no dizzyness, no pain. My energy and wellbeing has improved a lot mostly from lyme treatment and detoxing.