Avatar universal

Everyone with neurolyme, help me help the thousands out there.

Hey Folks,

A bit of a background. I’m a researcher that has had experience with neurolyme at one of the top colleges in the world. I believe my experience with neurolyme and all it’s UNEXPLAINABLE AND WEIRD sensations put me in a unique position that help others that might still be struggling with what’s going wrong with them.

It’s evident that folks with neurolyme (or neuro bartonella) have a wide variety of symptoms. But one common trend still remains amongst almost everyone with the condition: cognitive impairment. Yet this concept still remains vague. Some folks call it brain fog, others call it as cotton in the head. This leads to great diagnostic difficulty because something as simple as a vitamin b12 deficiency can lead to basic brain fog. As a result, people that should have been diagnosed earlier with neurolyme delay their treatment resulting in consequences.

I believe neurolyme produces a distinct set of sensations that differentiate themselves based on severity and how the sensations feel. Neurolyme or any other chronic infection produces an immune response in the brain and these immune responses manifest themselves in what people call “weird and vague” sensations. I believe identifying these vague sensations are KEY in achieving a clinical diagnosis, especially in light of all the inaccurate tests out there.

The mainstream medical community, of which I am accidentally a part of (and hope to change) does not of these sensations and there is not classifications system because were are the very beginning in our understanding of the immune system and the brain. But I am confident that the future will result in classification of symptoms that are considered unexplainable right now.

Everyone, for example, says that they occasionally forget things. But when a 20, 30 or even a 40 year old goes in the shower, picks up a shampoo bottle, and forgets what it’s use is, you know that this isn’t a simple b12 deficiency. When you get shooting sensations in random parts of your body you know that it isn’t a simple b12 deficiency. When your head feels like blood vessels in it are actually physically blocked you know that things are more serious than you thought.

As a result, my aim in writing is to help other potential neurolyme sufferers understand what it feels like to have neurolyme. I believe this, in a field riddled with inaccurate testing, might help those struggling with sudden and weird neurological symptoms that no dr. or mayo clinic entry can explain.

As a result, I would appreciate it if you could answer some short open-ended questions below. This would indirectly help me in my research and help others take the first step in figuring out what SUDDENLY went wrong with them.

1). What weird, unexplainable, sensations do you get in your head?

For example, for me my symptoms suddenly started with me feeling really heavy in the head. All of a sudden after a visit to a forested area, I started feeling as if parts of my brain were blocked, almost as if there blood vessels blocked in the head. And this isn’t a methaphor or simile, I actually had a DISTINCT, PHYSICAL sensation in the head. It wasn’t painful but it made it so much harder to think.
Other sensations that I’ve heard folks describing is that their head PHYSICALLY feels like it’s stuffed with cotton and they have access to a smaller part. When they say a smaller part, again this is a physical sensation. It actually feels like the rest of the brain is blocked.

I’ve heard folks say that their head feels swollen and physically feels inflamed.

I’ve heard people say that they get involuntary jerks in their head (like an electric shock but not painful) throughout the day. Sensations such as these travel through the back of their neck, make them feel temporary light-headed and suddenly through no will of their head, their head actually moves an inch or so.

I’ve also heard of people complaining that occasionally for seconds, parts of their brain actually vibrates. Imagine putting a mobile phone in any part of your brain and it’s on vibrate mode. That’s the feeling that some folks have described.  

2). What other weird sensations do you have in the rest of your body?

I get occasional tingling through almost all my body. Sometimes I get pins and needles (the kind of feeling you get when your leg is dead because it’s in the same place for too long).

Another problem for some I’ve seen is that they occasionally get pressure on their face. Again this is a physical sensation and it feels like there’s something heavy underneath their cheek. They’ve done sinus x-rays and they’ve come back normal.

3). What non-physical deficits do you get and how have they progressed?

For example, for me it was the blocking sensation in my brain above. Slowly, it progressed to having a lower working memory. Forgetting things that I used to. Setting a reminder and forgetting it moments later. Being scared to drive because you feel like you’re not as alert as before.

4). What were your initial symptoms and most importantly, HOW DID THEY PROGRESS on a linear timescale?

Again, taking my example, the blocking sensation that I had without anything else led me down a path full of other illnesses. Maybe my thyroid was wrong, maybe I had vasculitis, maybe I had some form of sub-clinical and chronic autoimmune encephalitis. But I was clued in to lyme as this progressed. These blocking sensations would constantly roam around in parts of my head. Before it was right on the temples, then they were on the back of my head. These lasted for year and a half. Slowly, I started getting tingling. Then pins and needles alongside actual non-physical cognitive deficits. This resulted in thinking that this could be serious and it could either be autoimmune or some sort of chronic infection with the second being more likely. This was my stage after 2 years. Tried empirical treatment for this, and because it worked, continued down this path.
5 Responses
Avatar universal
Not ignoring your post; but I just read it and I'm going to have to think about it for a bit before I can answer.
Avatar universal
I may have Lyme, or I may have something bizarre that irritates my nervous system at times. What I had, and for now has disappeared with cooler weather and I hope never returns, presented and felt exactly like very early stage MS. Knock on wood that it never comes back. I've continued to have some digestive issues, but it seems like I might have them more under control for the time being. I'm glad all the weakness and what not seems to have disappeared. I still get the electrical shocks now and then, but not nearly as severe or frequent as what they were earlier this year and during summer. Hope that helps a bit.
I may also mention that the numbness, weakness etc etc, was confined almost exclusively to the right side of my body and later involved the left leg as well.
Avatar universal
I get weird sleepy sensations on one side of my brain. It's maddening. It's like my left eye is tired and the whole left side of my head. I have numerous other symptoms of course, but that one is miserable. I also have tremors, nerve pain in my teeth, etc. I've been through 3 cycles of abx through my LLMD and ai haven't seen any improvement yet. Should I be worried?  I'm just looking to get better and worried because it seems like I should see something by now?
Avatar universal
My Lyme manifested much more in the joints (possibly because it either came with or was triggered by Human Parvovirus B19 which attacks the large joints), and that overwhelming pain overshadowed my other symptoms, which I am now discovering as the pain retreats somewhat with my treatment and I realize I have these other symptoms as well.  I had severe fatigue and brain fog that I didn't even recognize because it had become my normal state of being.  My brain fog feels like mud or quicksand or some thick gel that I have to push the thoughts through, so that thinking feels like a physical effort.  

I get numbness on the outside of my forearms (like they've gone to sleep), and sometimes my skin crawls or itches, which is usually followed by relatively brief pain.  Sometimes it feels like my body can't control its temperature, I'm shivering then I'm sweating, then I'm ok, then sweating again.  My neck is frequently quite stiff.  And the mood swings still catch me by surprise.  
Avatar universal
I have had the vibration feeling in my head at least three times.  I have twitching under my eyes and tingling/asleep feeling in my legs and hands.  Other symptoms are that my tongue is a mess (geographic tongue) and my gums ache.
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