On September 5, 2018 I wore contacts for the last time. What I thought was just a little eye irritation ended up being a real life nightmare. I didn’t know that what I was actually happening in my eye was an eye eating parasite called, Acanthamoeba Keratitis and Herpes virus. While it is rare, I have heard from way too many people who are suffering from this horrible parasite to believe that reports of it being 2 in a million are correct anymore.
What I thought would be a quick break from my contacts, ended up being a nightmare that lasted for 7 month fight to keep my eye from permanent blindness. It was painful, scary, and I don’t wish it on anyone. That’s why I have decided to share my story. Like every part of my story. I want to be a warning flag for anyone who might read this and hasn’t ever experienced the Acanthamoeba parasite. Take care of your eyes. You don’t know what you have until it is almost taken from you entirely.
What is it like to have a parasite in your eye?
It is honestly hard to put into words what it is actually like to have a parasite in your eye. Burning, pain, intense light sensitivity, constant streaming tears, and lots and lots of squinting. I shared my entire story in video form. There are a lot of very medical journal sounding articles out there about Acanthamoeba. But what about the people who are actually going through this hell that is an eye eating parasite? I wanted to share my story from my voice. Watch this video to get my full story.
Do you go blind from Acanthamoeba?
You absolutely can go blind from Acanthamoeba. That is why this is something that needs to be taken so seriously. I lost all of my peripheral vision in my left eye but it miraculously came back and healed completely. I do realize that I am extremely lucky that that happened and that it isn’t the case for so many of my fellow Acanthamoeba victims.
How do you know if you have Acanthamoeba?
If you have an eye irritation, go to an ophthalmologist. They are literally trained in all the weird eye things. Do not go to an optometrist. They are trained in checking your vision and getting you a prescription. Do not make the same mistake I made. I wasted 4 weeks of severe pain by going to an optometrist who had no idea what was going on. He continued to tell me, “this is the strangest pattern.” while throwing more steroids at it.
The permanent scarring that I have literally goes up to my iris. I have to take medication and eye drops for the rest of my life to prevent any herpes flare ups from happening. If a flare up was bad enough, it could permanently damage my vision because the scarring is so close. If I hadn’t wasted 4 weeks going to a doctor that was too prideful to tell me that he didn’t know what was wrong, I could have caught the parasite a lot faster.
How do you get Acanthamoeba parasite?
Acanthamoeba is mostly found in contact wearers. It comes from contaminated contact lenses. How those contacts get contaminated can be a number of different things. Swimming in contacts, hot tub in contacts, showering in contacts, topping off your contact case with more solution before dumping out the old solution, and rinsing your contact case in tap water.
I got my parasite from rinsing out my contact case in tap water because had absolutely no idea that you weren’t supposed to rinse your case in tap water. I would rinse it out and put new solution in every night and thought I was doing everything right!
How to avoid Acanthamoeba?
- Don’t wear your contacts in water! Swimming, hot tub, or shower. Just don’t do it!
- Don’t rinse out your contact case in tap water.
- Use solution to clean your contact case.
- Wash your hands before putting contacts in, or taking contacts out.
- Wearing daily contacts.
Obviously I am not a doctor. These are just things that I learned from my doctor. If you are concerned about Acanthamoeba, speak with an ophthalmologist.
Acanthamoeba and Herpes Virus
Not every Acanthamoeba patient will also have the herpes virus. I should have played the lottery because I was one of the lucky ones who did! (Insert MUCH sarcasm here) We didn’t learn that I had herpes until we had most of the active amoeba taken care of. Herpes and Acanthamoeba can look fairly similar, until a microscope gets involved. Eye herpes is basically a cold sore IN your eyeball. Super pleasant! This also creates intense light sensitivity, irritation, and red eyes. It is something that I will live with forever, therefore I take medication for it daily. It is really painful when I have a flair up but by taking my medication everyday, flair ups are pretty much non existent.
Life after Acanthamoeba
When I finally got a clean bill of eye health, my doctor told me that glasses were going to be my best option. He told me that I probably had been a contact wearer who occasionally wore glasses before. Now it needed to be the opposite. I have done exactly that. He encouraged me to wear daily contact lenses when I did choose to wear contacts. It is my new normal. If you didn’t get a chance to watch the video, take the time to watch it. I share basically every detail of my story there.
Have I scared you to death about getting an eye parasite? I hope I have! While I am extremely lucky to have my vision, so many are not that lucky. Take your optical health seriously.