Dystonia

As I wait the results of the MRI I got done today, this whole time while I feared a rare disease that effects 0.006%-0.4% of the population at any one time, being a logical and super analytical person I just had to find more statistically probable answers.

During my 2 weeks of research I would learn more and more about particular subjects, conditions, and areas of the body. If I hit a research wall it will get me down. However a wall is being hit because there's a connection to something else. Once that's realized I start learning and researching this and it makes things make a bit more sense, until another wall. Until another connection is found. And repeat.

This research started with faciocranial bone growth, so I was focusing on this in particular (top down). This lead me to many very rare disturbing conditions (as expected when googling). My understanding grew about my condition as being bone movement, bend and flexing, not growth. This opened research doors to so many things. It also explains the relative fast change that would be biologically and scientifically impossible if it was real bone "growth".

Independently, I would find the connection between this shift with dental misalignment which is exacerbated by TMJ. TMJ of varying degree is actually pretty common among people with lyme because lyme infamously destroys joint tissues.

Then one night when I was laying in bed I started thinking about my recent health history (over the past year) and weird things started happening then.

A year ago. What seemed like over night my right collar bone very noticeably started to protrude. Ignored it. Then around the same time as I would lay down to sleep, I felt my left hip protrude much more than the right. Ignored it (as you can't freak out with every little thing with lyme).

Move forward a few months TMJ symptoms. Move a few more months forward my nose starting to be slightly crooked to the right. During the same time my left rib begin to wing out as my right rib stayed in place (most noticeable when laying down).

Remembering all of this made me do measurements. My left hip is lower than my right. My right collar bone that protrudes is shorter (proving bending and flexing and not growth).

All this research has brought me to Dystonia.

Dystonia is one of those things where the name isn't used in the main stream medical community, until it's super severe but the concept of Dystonia (and it's cause) can be much more common in people.

Here is a good link that describes what is happening to me: https://biomechanical-dystonia.net/2016/10/25/bio-mechanichs-of-dystonia/

Pay special attention to #1,2, and 3. #1 the picture shown (head side bend/cranial shift) is not really an exaggeration. I am proof of that, as I have right side head bend and collapse. Under this misalignment and strain I learned it also can cause the frontal bone to flex and protrude forward and when it does the floor of the frontal bone (which would be the ceiling of the holes where your eyeballs are in) flexes up. These two things causing a more prominent fore head and brow bone.

Another link of a woman that "cured" herself:

https://curefordystonia.com/category/what-causes-dystonia/

She was a very severe case where she basically had tourettes.

Then I read her solution and it lined up with what I was already thinking of as solution. Fix Dental/TMJ issues, practice the very best posture, I was going to take it a step further and go to a Chiropractor, and alignment promoting stretches everyday.

Do any other of you lymies have experience with mild to moderate dystonia (not super severe)?

Thanks.

Edit: while this movement/misalignment was happening parkinson symptoms in my right arm/hand came back, as well as nerve pain, sciatic nerve pain, and muscle twitching.

Post Edited (dacarte3) : 6/14/2018 2:32:34 PM (GMT-6)

I had dystonia specifically caused by Bartonella encephalitis. It's not a common symptom but does happen.

It's gone with antibiotic treatment.

It was kind of stumbled on when I was given strong migraine medication when I was in the ER with horrid head pain and I went into bad seizures, twisting, etc.

If you think about it it makes sense. Migraine medication constricts blood vessels which for some people with Bartonella or Lyme is a problem. If you are already dealing with inflamed blood vessels in your brain and you constrict it more that not good at all.

The solution for my dystonia was vasodilators, dilation of the blood vessels in my brain. They kicked me out dystonia episodes within minutes.

I am not sure how it works for everyone with dystonia. The brain is so unbelievably complicated.

Side note. I have no history or family history of seizures or dystonia. This all started and ended with Bartonella. I was diagnosed with dystonia from encephalitis by doctors.

I did not have TMJ issues. There are a TON of different types of dystonia however.

Mine was more a tremor ( Parkinsonian type ) and very abnormal twisting of the neck, hands, and elbows. I couldn't hold my head up straight. When you see pictures for dystonia online I was exactly like those.

I am not aware of muscle wasting dystonia. Perhaps your issues are the area of your brain affected by Lyme?

Dystonia tends to be spasms and episodes. It goes away after a period of time then comes back.

It's thought to be deep neurological in nature with is why deep brain stimulation is often used as treatment.

I talked a bit to the Dystonia Foundation. They had some interesting insights.

I guess the silver lining is if it's infection based and you tackle the infection it can go away.