CNS Involvement?

I always hear people talking about CNS involvement with Lyme. I'm pretty sure this is happening with me, but what do other people experience with this? What are some signs you're having CNS involvement?

"CNS involvement" means it's affecting your spinal cord and brain as those make up the Central Nervous System.

The best list of symptoms that I can come up with comes from our own listing in the "New to Lyme?" thread:
CENTRAL NERVOUS SYSTEM/NEUROLOGIAL/NEUROPATHIC/OTOLOGIC:
Abnormal CAT, MRI and/or SPECT scans
Alcohol intolerance
Aseptic meningitis
"Brainfog"; inability to think clearly
Difficulty moving tongue to speak
Diminished or absent reflexes
Fainting or blackouts; feeling like you might faint
Headaches (frequent, severe, recurring)
Hearing fluctuations (sounds fade then return)
Hearing changes, often from day to day (need to turn up, then down, volume of radio, TV)
Joint or arthritic pain not relieved by NSAIDs (ie, ibuprofen)
Libido (decreased)
Light-headedness, feeling spaced-out
Migraine headaches
Muscle twitching
Noise intolerance
Paralysis or severe weakness of limb
Parasthesias (numbness, tingling, crawling, itching sensations) in face, head, torso, extremities
Photosensitivity
Radiculitis
Seizures; seizure-like episodes
Sensory alterations (hyper- or hyposensitivity) - smell, taste, hearing (noise intolerance)
Severe muscle weakness
Syncope (fainting)
Tinnitus (ringing/noises in one or both ears)
Touch or weight of clothing on or against body causes discomfort or pain
Tremors, trembling

Thank you!

Actually I guess I'm not sure if I have CNS involvement.

Some of my issues are numbness, nerve pain, vision problems (blurriness & floaters), muscle twitching (TONS), shakiness, internal vibration feelings, a new difficulty for reading...among others.

Not sure if that is enough to suggest I have any CNS involvement...

RunnerGirl

I have had the exact same symptoms! However, I must admit mine manifest(ed) differently than yours (my vision problems were ocular migraines, for example)....and I also had super-mild Bells Palsy.

I'm going with the thought that I have peripheral neuroborreliosis. If I can't heal from that, then I guess I might pursue CNS involvement.

Maybe I'm being overly optimistic but my LLMD considers me an early case.....and I'm trying to remain positive :)

I just started taking pinella brain/nerve cleanse on Christmas Day - first with 5 drops once/day. I had some weird sensations in my head (toxins moving?) and then I noticed my internal vibrations have been "replaced" somewhat by mild poking or buzzing sensations. Numbness has been "replaced" by stinging pains in my hands (I had some in my feet awhile back). I've had a couple of super-mild, short-lived muscle twitches (didn't have them before)

I'm just now up to taking the recommended dose of 10 drops 3 times/day. Something is going on with my peripheral nervous system right now.....I think it's good....and I think pinella gets the credit for it.

As I move forward in my Lyme journey, I'm really seeing a difference in how I feel based upon how much detoxing I'm able to do each day. The more detox I do, the better I feel.

I finally have a routine that provides for oil pulling, skin brushing, lemon water, milk thistle, organic green drink and pinella daily with exercise hopefully happening with that frequency. If not, it's definitely happening every other day. There have been many additions to my supplement regimen and I've found them all helpful. The changes happened on a step-by-step basis since that works best for me.

And, magnesium is so very important for every aspect of our body's health. I'm taking a combo of Mg citrate and Mg malate that totals 500mg twice/day.

If I have any muscle twitches again, I've decided to see if taking additional Mg helps...

I received inspiration for a lot of what I do based upon stuff shared on here and my further research. I really like Dr. B's Diagnostic Hints & Treatment Guidelines which identified supplements that would benefit me.

It's been quite the process and it's ongoing but, somehow, I feel like I'm making some progress and I sure feel like a turtle lol

Somehow, I'm confident you can relate :)

I am taking only abx and see my LLMD this afternoon with the expectation of him switching them around again. I will also be asking him about starting LDN.

Co-infection testing was negative and my LLMD hasn't dx'd me clinically. There was a time when I had a hot flash in his office (and had a couple to report to him) and he started to suspect babesia. That idea went by the wayside since I haven't had a hot flash since.

The foot pain I'd developed started me thinking about bart but now I'm not so sure. My symptoms are really quite mild overall and I'm sure that's making things challenging for my LLMD.

Months of treatment seems right - blech lol

In his "Diagnostic Hints and Treatment Guidelines", Dr. B mentions a 4-6 month treatment timeframe for early disseminated Lyme *if* the patient hasn't taken steroids and doesn't have immune deficiencies. Obviously, co-infections will add to that window.

The "progress" I've made is improvements in symptoms I developed *after* I started treatment. I definitely have more symptoms than I did before I started treatment - another blech lol

Hope you make some progress!