If Lyme Disease was a book, Stephen King would have written it.
That's how twisted this disease is.
People with Lyme Disease experience a carnival of symptoms.
These symptoms bend the mind, and cripple the body.
These symptoms appear so random, and so similar to other diseases, that doctors often spend
years misdiagnosing patients with other conditions like Lupus, Fibromyalgia, Multiple Sclerosis, and Rheumatoid arthritis.
For this reason Lyme is called the great imitator.
It can imitate a host of different diseases, which is why in this video you'll learn to
recognize the symptoms.
You'll learn what to look for, and what the symptoms look like, but more importantly,
you'll get a deeper understanding of how the symptoms feel.
I lived with Lyme Disease for ten years, but it took nine years and almost twenty doctors
to diagnose.
In these ten years , I experienced over thirty symptoms.
These symptoms came in stages, often several at a time.
My initial symptoms were subtle at first.
They got worse, but they came on subtle.
Brain fog, depression, social anxiety, chronic fatigue, memory loss, mood swings, and daytime
sleepiness.
I was 19, and it almost seemed like I had puberty again, except different.
Something I call: Lymeberty.
Lyme messes with your hormones.
It turns us into angsty, terrible little pre-teens.
If you're are a pre-teen with Lyme...you have both.
Learn to laugh.
It's one of the medicines.
Lymberty.
Lymberty robs you of your liberty.
You can't be yourself.
You don't feel like yourself.
You don't know who you're becoming, the same way a pre-teen doesn't know.
You don't know who you're becoming so you have all these different ways of acting out.
After a couple years of living like this, the next batch of symptoms emerged.
Where the first batch messed with my mind, this second batch broke down my body.
These symptoms were: acid reflux, spinal discomfort, food allergies, high blood pressure, itchiness
in public and private places, cold intolerance, cold hands and feet, low body temperature,
a slow heart rate, jaw tension and clenching at night, insomnia, sleep apnea, muscle cramps,
and tremors and fasciculations in my calves, poor coordination, dropping things randomly,
just randomly dropping something while walking, tingling pins and needles in my hands and
feet, electrical sensations down my spine, especially if I did this, when I touched it (my chin to my chest,)
it would cause a sharp electrical pain going down my spine, frequent ear and sinus infections,
musky body odors, a thick white coat on my tongue, and IBS.
I B.S. you not...that S*** was terrible.
Blood tests at this time revealed a very low testosterone for my age, and a low platelet
count.
Symptoms.
With the spinal discomfort, I could never get comfortable when sitting down.
It felt like a snake was in my backbone, and I had to constantly wiggle it out.
Always tring to crack..move it around.
That sensitive snake.
It needs a massage.
My night sweats were so bad that not only were my sheets soaked, my mattress was soaked.
I'd have to change my sheets twice a night sometimes, and not only would I change my
sheets, I would put towels down underneath.
When I was 22, my night sweats were so bad that my skin was moist and clammy all day.
My lymph nodes swelled massively all over my body, and when I saw my infectious disease
doctor, he put me in a CT scan right away.
Afterwards he told me, "I thought you had Lymphoma.
I thought you were a gonner."
Then he put me in an MRI and said, "You probably have MS.
It's not that bad.
Compared to Lymphoma."
That's Lyme.
The great imitator.
Digestion was a huge problem, and I quickly learned through experimentation that I couldn't
tolerate processed foods, carbs, wheat, sugar, dairy and fruit.
The first thing I gave up was wheat, and within a couple weeks my blood pressure went from
170 to 100, 110 sometimes.
That was the first huge indicator for me the power, the effect that food can have on your
health.
The next thing I gave up was sugar, and almost immediately, within a couple days, the night
sweats stopped.
The itchiness also died down, but the night sweats stopped . Any time in following years
where I cheated, and ate something sugary, the night sweats came back.
Sugars also brought on these flash fevers, where I would have a random fever that went
to about 103 degrees, then it'd disappear.
It'd be gone.
It just left me feeling used and abused...like,
why did you do that to me?
My hands and feet were always cold.
My core body temperature went from 98 to 96, sometimes 95.9.
A low body temperature is bad because it allows pathogens to thrive, among other processes
like enzymes...it's bad, you need to raise your temperature for optimal health.
Due to my insomnia, the doctors gave me a sleep study, and they diagnosed me with mild
central nervous system sleep apnea, not obstructive.
When Lyme gets in your brain it's called neuroborelliosis, and that's what caused my ALS-like symptoms.
I often got the muscle cramps in my feet, so bad, like my feet became claws.
It would last for maybe thirty seconds and I had to just had to relax it.
And the same thing with the, when I was sleeping.
I would wake up all the time with Charley horses.
I'd have a Charley horse in my calf or my hamstring and it'd last for like a minute
and I just had to sit there holding it, like my entire leg stretched out.
The pins and needles happened in my legs every time I was sitting down.
My legs would fall asleep.
My hands would fall asleep if I had my arm resting on a cushion.
On a cushion, that was enough to cut off the circulation.
So my circulation was really bed.
And if i was sitting cross-legged my legs would fall asleep in less than a minute.
I couldn't, I hated sitting cross-legged.
I would prop myself up and people would be like, "What are you doing, do you have to
fart?
What's going on?"
The frequent ear and sinus infections, the white coat on my tongue, and the musky body
odors probably meant I had developed a systemic overgrowth of candida, or some other pathogen,
and that's very common with Lyme Disease, to have a co-infection like candida.
When I was 26, many of my earlier symptoms got worse, while a new, insidious group of
symptoms emerged.
SIBO, mindless binge eating, eye floaters, parotid insufflation, where my salivary glands
right here would swell up with air if I blew out like this.
I'd have to deflate them like little balloons.
Also, tooth decay, extreme eye pressure, a weak urinary stream, like I couldn't pee hard
enough, it just came out so slow.
I would also pee 3-4x a night, waking up and never getting a deep sleep.
Bone ache, these achey breaky bones that made me feel...ancient.
My heart hurt.
My heart literally hurt.
Like someone was pulling a string through it, really quickly, like a pluck, like a doctor
was pulling out your stitches with one, methodical rip
rather than threading it out.
One of my ears dropped, like permanent palsy, like you see my glasses, they don't sit right.
It both of them touched right there, this would be how my glasses should be.
My ear dropped.
My glasses used to fit.
When talking to someone sometimes I couldn't remember the word I wanted, and I developed
this weird type of stutter, not so much stuttering but pausing, like my mind was glitching.
Like the word was right there on the tip of my tongue, but there was a hook with a line
pulling it back down.
I couldn't get it out.
Like a lag in a video game.
Sometimes when I stood up too quickly I'd have this weird sort of seizure, where I would
jerk and fall to my knees.
It wasn't like a typical...I've seen epileptic seizures, but this was...I don't know, it
was strange.
Until I was 27 I worked and ran a lot, because exercise was the only thing that treated my
depression and anxiety.
But around the age of 27 I must have burned out, because I couldn't recover anymore.
Even if I did a single squat, I was out for a week.
Imagine you haven't worked out for two months, five months, whatever, and then one day you
do a massive workout.
You know how that next day how sore you are?
How that soreness has a sharpness to it?
Like a creaky, plastic sharpness?
That's how it always felt after even a single squat, after a single mile of running.
My whole body felt like that all the time.
It got to the point where I didn't want to leave my apartment anymore because I hated
the idea of climbing back up the stairs.
Like the stairs were an insurmountable odd against me.
Like I didn't own my body anymore.
Like my body owned me.
Like owned.
Like OWNED.
Like I got owned by my body.
That's how it felt.
This group pf symptoms freaked me out because...it goes to the root of human fears.
Like, one day I was brushing my teeth and then I looked in the mirror and saw my my
teeth were decaying...on the outside.
I saw the roots, and what looked like scabs caving in.
Like something was eating my teeth. That's the stuff of nightmares.
Don't mess with the teeth.
That was game over for me.
I was like ok, something is wrong here.
I have to move.
I also had a few thick white hairs growing on my chin.
If I grew out my beard, these white hairs, I had three or four of them, spread out.
That was clearly showing that my body was stressed, and prematurely aging.
It confirmed how old I felt.
Then one day, when I was 28, a little over a year ago, it felt like my stomach jumped
into my esophagus, like my stomach was right in my xiphoid process, like right there, that
little knot.
And I had pain radiating all around my liver and gallbladder.
And it turned out my heart rate had dropped to 25 beats per minute.
25 beats per minute.
And I had a splitting headache that gave me new appreciation for the cliche, to split
your head in two.
Cliches, when you're sick and you're living them, they're the most real thing you can
experience.
Like oh my god, splitting my head in two, I get it.
But by this time I had so detached from my body that I didn't worry.
Intellectually, I felt like I was dying, like this is the end.
Like finally, whatever it is that I have, it came for me, and I'm going to go.
And so chill, like I was, like nothing was wrong in the world, I walked a mile to Weil
Cornell, the Presbyterian hospital in Lower Manhattan.
I walked there, checked myself into the ER, and said, "I have a heart rate of 25."
They didn't let me leave for four days.
They did every test you could imagine.
I will show you every test they did on me, and I've never seen doctors who were so confused.
Ever.
These doctors were flummoxed.
I had pure consciousness I was articulate, I couldn't explain things.
I told them what was happening.
And I did these heart tests, and they said they, literally, literally, they said they
had never seen such a strong heart.
So whatever was happening was obviously electrical.
it wasn't my heart that was bad.
Something else was going on.
But they didn't get it.
They didn't get it.
This was like the first time that doctors had seen that I had symptoms, I wasn't making
them up, and they could not make sense of it.
I was secretly very happy.
I was like, "Hell yea!
Now you see I'm not making this s*** up, doctors.
I'm not making it up.
I can't consciously lower my heart rate.
I'm not a yogi.
Like the nurse, one of the nurses looked at me, when I was checking out, because my heart
rate had raised to 40, and I was like I am getting out of here.
I can't spend another day in the hosptial.
You guys don't know what's going on.
I'm going to figure it out.
So one of the nurses looked ot me and said, "I have never seen someone who was, who looked
so ill, but seemed so healthy."
It's the paradox of Lyme.
I don't udnerstand it either.
I don't know.
So, after this episode, I finally realized that the traditional doctors could not help
me, so after this I sought out a funtional medicine doctor and that's a story you can
hear in my last video, My Life in the Lymelight.
If you have or know someone who has Lyme, or might have Lyme, please share this video.
And share it with their friends and family.
Because they need to know what it's like.
They need to understand.
They need to know that this disease is not just in that person's head.
It's true, and it's real.
And we need help.
We need to heal.
In the next video in this series I'll share with you my bloodwork, and all the random
tests I took over the years.
Thank you for watching.
Subscribe because you will help build this channel, and that will help spread the word
on Lyme Disease, on what we need to do to, to truly heal ourselves.
And don't forget to play.
Make yourself play.
Live whys and profit.
Just find a way.
Even if it doesn't feel natural at first, play, for me, in the first, when I first started
playing around, like being playful with myself again, trying to feel young, it did't feel
natural, but work through it.
Nothing feels real with Lyme.
Just play.
Just bring that lightheartedness back into yourself.
So thank you again.
Live Whys an Profit.
Even if you can't sing.
Yea.
Play on.
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