What It’s Like to Live with LYME DISEASE | Bustle

In 2018, over 33,000 people had confirmed cases of Lyme disease in the U.S.. This tick-borne illness is one of the conditions that is actually quite difficult to diagnose. Most patients are able to treat the symptoms with an antibiotic. However, according to the Lyme & Tick Borne Diseases Research Center at Columbia University Irvine Medical Center, around 5-20% of patients with Lyme disease will go on to have chronic symptoms. Those odds become higher, the longer an infection goes undiagnosed.

Bustle spoke with New York based comedian Tori Piskin, who has been living with chronic lyme since her senior year in college, to understand why getting a diagnosis for lyme is anything but a direct line.

Check out Tori's channel: @toripiskinhair

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[AxisMundi]

I had two ticks buried in me. Got them out early. Never had a rash. Even so I get symptoms like this every so often. The really disturbing thing is that doctors have always discouraged me from getting tested. They always say it's a "medical rabbit hole" not worth exploring. Way too expensive. This disease is horrible, so why are medical professionals so unwilling to test for it?

[aphoenixperspective]

“And now that tick has HPV 😄”
Omg I lost it 🤣🤣🤣🤣

[NiwatoriKaiju]

Thank you so much. Misdiagnosed for over half a year. I went from being a healthy young woman to nearly disabled and my family suffered trying to figure out what was going on. Thank you, this helped me not feel so alone

[deborahkish]

I got Lyme disease 38 years ago. It took 27 years to get properly diagnosed. I'm in late stage.

[TonTon.]

I’ve been at this for 12 years now. Up and down. These past few months, I’ve hit an all-time low. There’s so much. Words don’t do it justice. My psyche is breaking. I think about self-harm every day, all day. I’ve tried so many things. It’s hard to function in society and I don’t really have anyone to rely on. Trying to get better costs money and there’s no promise that anything you try will work in the long run. I’ve spent tens of thousands of dollars, just to keep breathing, right? To suffer. Good moments are so fleeting. I’m so forgetful. I forget why I keep living. I hate to be so negative. I’m sorry. I know I’m not alone in this. I pray you all keep the strength and sanity, huh? Myself, I’m finding it really difficult to hold on. I’ve been having these mental breakdowns. I really feel crazy, some days. Crying, screaming, hurting myself, laughing like I’m psychotic. How can this be real, I ask. Enough is never enough. And, yeah, most people don’t care. They don’t see that I’m sick. And, you know, healthy people, when they have a rough day, they can just like... go eat a pizza or ice cream, right? Comfort food. My GI system is so fucked up, I eat about a dozen different food items... all the time, green veggies and lean meats. If I eat anything else, I get deathly ill. It’s candida/mold or something. I’d ask for a hug, but... honestly, they don’t even help. I’m so detached from everything and everyone. I wish I would die, really. This is hell. And people talk about God. Hahahahahah....

[samharper]

This is a horrific disease. I’m late stage misdiagnosed/undiagnosed for 12 yrs. We need help !!!

[allisoneuph]

Thank you so much for this video. I have neurological Lyme. It’s hell! We need so much help and awareness

[BrynnMcmaugh]

28yrs of suffering and i just found out its lyme. Way to go Us health care system. Lyme disease is a gift that keeps giving. Even though i don't want anymore gifts it keeps giving me gifts

[lesroberts]

I have just been diagnosed and I was given doxycycline which I reacted to and had to go to the hospital today. This is the first thing I’ve looked at regarding this issue and I’m worried about it. It was good to hear someone talking about coping with it, i just didn’t realise how much it can effect your life.

My Lyme is 24/7/365, has been for over 16 years. I used to have a great sense of humor, but this shit has killed it. Still, I admire you for finding a laugh or two in your struggles.

For me, the fatigue, numb brain and dizziness, are the worst of my symptoms, but I have many more. Still looking for a guiding light somewhere out there.

[vickyhamlin]

Thanks for sharing. I've been bedbound 8 years this year, I got diagnosed a few years ago. It feels relentless and neverending. You give very accurate descriptions of certain symptoms. Yes to the neurological symptoms - I always feel like someone is behind me, I'm detached from myself looking at myself through a video screen and I'm constantly in fight/flight mode. Such a debilitating and devastating disease.

[kclarke]

You are right it is HELL, took 3 years to recover. I seriously feel lucky to have survived it. No drama, it is awful.

[kaylo]

I had Lyme when I was 10 and wasn’t treated until my legs started losing function. One doctor said it was psychosomatic, but then I tested positive for Lyme. I thought I was cured of it, but last year, I had the rash come back. After antibiotics, it disappeared, and then came back on the opposite arm! I was slurring words, losing weight, feeling cognitively slower, exhausted. Took about two weeks for the symptoms to leave. But there was no possibility of reinfection. There needs to be more research because I want to know if it’ll keep coming back like that and effecting me at random times throughout my life. I’m lucky that my symptoms clear up quickly after treatment but I always live in fear whenever I have a bug bite and I don’t remember being bit (because I think it might grow to a bullseye). If anybody has any good information or websites on it, that would be helpful.

[ookipuki]

It can make u literally IN...SANE!!!
Its so painful too. I hurt so much for my partner.

[growthspurts]

That’s really helpful, thanks, you made the awareness of Lyme disease less painful
…..

[robertcurry]

I have it too. It comes up bad when you eat sugary stuff. The bacteria thrives with high carb foods. Take liquid canacurcumin and it helps alot

[GOSSIP_SIM]

Misdiagnosed with MS over 10 yrs ago I found out last year that I actually have Lyme. Fatigue, rigidity in joints-especially hands in the morning, muscle spasms, legs pain- constant pain that doesn’t go away with medicine, teribile headaches, eye sensivity when it comes to led lights, diziness . Get properly tested. 🤞
Oh. And don’t assume anybody will actually understand what you’re going through. As long as you look healthy, the people around you might say you’re just exaggerating.

[jackierickson]

I got lyme's disease at age 11 and I can say it ruined most of my childhood, I am better now but I still have some side effects from it but I have been able to do so many more things, and I am so thankful it is gone. I definitely want to celebrate Lyme disease Awarness month in 2022!

[theresilientspud]

I'm bedridden from chronic lyme disease that was misdiagnosed for 18 years. This disease is no joke. Its ruined my whole life. I feel this person is not a good representation of what living with Lyme is like. Its pure hell

[lauraallen]

I have had it for over a year now and started my true battle with it this year. You're right. Just about learning to live with it. Independence robbed. Lets keep fighting girl!