My Eye Update & A Warning to Soft Contact Lens Wearers
 

About a month ago, I started to experience some eye and vision problems. I have been undergoing a few different courses of treatment which did not improve my eye problems. On Tuesday a corneal specialist was called in for a consultation and decided to take some eye cultures, both swabs and scrapings. After a few hours of phone calls to different eye hospitals and doctors, I was diagnosed with an extremely rare eye condition called acanthamoeba. Fortunately for me, it is still treatable. There is a chance that I might have some vision loss, but the prognosis is cautiously optimistic.

I need to use five different eye drops and take pills for the next month or so. I began this treatment on Tuesday after trying to locate all the medicine that I need. One of the drops was sent to me via Fed Ex yesterday since we could find only one pharmacy in the US that makes it. I used over 50 drops yesterday in a "shotgun" approach to remove this parasite from my eyes. I use one drop on the hour, the second at :15 later, and a third at :30 all day long plus two different drops in the morning. I see various eye doctors daily since this condition and treatment need to be carefully monitored.

I learned that this condition is found primarily in soft contact lens wearers. I have been wearing them since I was a teenager and never heard of it. Many patients suffered from it about 15 or 20 years ago when hot tubs became popular. People can get it by wearing their soft contacts while swimming, using a hot tub, bathing, or showering as well as using tap water instead of solution and rinsing the contact cases with tap water. It's very rare, but it can happen. I just want to warn all of the people who wear soft contact lenses not to do any of these things. I don't want anyone to experience what I am because this is extremely painful and potentially vision threatening.

Thanks for the warning. I hope things get better for you.

peaches, i am so sorry to learn of your eye problem. it must be just awful for you. i hope that you will have a full recovery!! thank you for telling us all about this. both my teenagers wear contacts, so i will be sure and have them read your post , hope that this is over for you real soon. lisa

I keep my soft contacts in when I'm in the water...did you open your eyes underwater, or did it just happen that the water was able to get in?

P-n-C, I hope that you get a full recovery.

Woah, thanks for warning us, I've never heard of anything like this. I hope you get well soon. :)

Thanks everyone. I'm doing my best to be a good patient and follow doctors' orders. It's weird. I'm not sure how I got it. Apparently, I was doing many things wrong. I change my solution in my case each time I wear them, but I also rinsed the case with tap water. Sometime I showered with them in.

I started to take SCUBA lessons and was swimming regularly a few months ago, but I didn't wear my lenses while diving or swimming only because I was afraid I would lose them in the water. I wore goggles or a face mask, but I'm sure I got water in my eyes. I would get out of the pool and pop in my lenses immediately because I have really bad vision without correction. I probably still had water in my eyes when I did that. This parasite gets in the eye and is trapped behind the contact lens and begins to grow.

i'm having eye problems too...but he thinks its just cornea erosion...which is bad, but not terrible. it's either that or an ulcer...i go back tomorrrow

Wow -- how shocking! I shower in my contacts daily. I guess I'll just stop showering. :)

What were your initial symptoms?

Did you have the disposables or regular soft contacts? I hope you have a swift & complete recovery!!

I actually rinsed my contacts with distilled water when I first had them...then boiled them in the little boiling unit....I can't believe it now. This was before I drank too, LOL.

Yup, when I first started wearing contacts (in '91, I believe), I had to wash them w/ this soap stuff, rinse them w/ saline, then stick them in the unit that would heat them up for an hour or so. It was such a pain.

I am glad things are going better for you! Hope to see you soon ;).

Thanks for the warning. Hope you have a speedy recovery...

I use my contacts when I'm in water...pools and showering. The reason being that I have really poor vision and I wouldn't be able to see a thing if I didn't wear them. Wearing glasses in the shower really isn't an option. :) I wash my contact lense case out with warm water and soap.
Did your doctor tell you what to do in these circumstances (blind if you don't wear corrective lenses in the shower, how to clean the case, etc.)? I'm curious because I am slightly more worried after hearing your story!
And I'm so glad that they were able to catch it. I hope that you have no remaining problems from this and it can all be put behind you.

I hope you are getting better each day.:)

P-n-C, I hope your recovery goes well!

Thanks for the warning. I've been wearing soft lenses since 5th grade, since I am, to put it simply, f'ing blind. Must start a more stringent eye care habit...

Thank you for the warning, I really appreciate it! I was a competitive swimmer in high school and I still swim a lot for fun, and I always wear my contacts in the water. I do wear goggles, but it seems like some water always gets in.

I hope your condition gets better, it's great that they are still able to treat it. Keep us updated on how you are doing!

Me too - and I shower with mine in. Whoops.

I hope you feel better soon Cream!

that sucks peaches! i hope you make a speedy recovery. man, its stories like this that makes me glad i got lasik...(although who knows years down the road what the long term effects will be).
but for now, im glad i got the lasik!

PnC, I really hope that you make a full recovery! I had never heard about this condition before, so this post is great for all of us that wear soft contact lenses (including myself). Things like this are reminders for us to take great care of ourselves.

Thanks for the well wishes and kind words. I really appreciate it.

I saw the eye doctor again today. Actually, four doctors saw me. They see an improvement since Tuesday and Wednesday so the medicine is doing its job. I gave myself 54 eye drops :eek: yesterday so it better be working! I'll be doing that until Tuesday when I see the corneal specialist again. The truth is I'll probably be treating this for at least one month.

Apparently, I am the talk of the ophthalmologists in New York. This condition is quite rare so the doctors line up to look at me. I am the first patient the younger doctors have seen with this condition in real life. The older doctors saw it a lot in the late 80s and early 90s so they know what to do.

I'll answer your questions now. I have regular soft contact lenses which I never wear while sleeping. My prescription (+7) doesn't come in disposables. Also, I can't get LASIK because my prescription is so high.

The first symptoms felt like allergy eyes. The were itchy and red so I was treated for allergic conjunctivitis. A week later they became light sensitive and painful so I went to the eye hospital where they diagnosed and treated me for keratitis and iritis in my right eye. After almost three weeks of treatment, there was no improvement. Eventually, they became more painful, felt dry, and felt like something grainy was in them. My vision began to diminish.

I'm not sure what to do about showering if you can't see. The doctor said to use one of those all in one cleaner disinfection solutions like Renu. Clean your lenses whenever you wear them and disinfect them for at least 6 hours. Change your lens case monthly. Rinse the case with solution, not tap or distilled water.

I hope you get better!

You have me all scared now.

Question: does it make ANY difference whether a person is short or far sighted? (probably doesn't. and the fact that I swim in the sea as well as shower and sleep with my contacts doesn't help. Or the fact that I don't change them after a month. I'm so screwed). But really, does it make a difference whether you swim in a pool or in the sea? Cos I did take my contacts out while on the swim team, but I never take them out when I swim in the sea. Your story has got me so scared.

peaches, glad to hear that the diagnosis and treatment seem to be on the mark. continued thoughts and prayers being sent to you.

sigmachicard, hope your condition improves and that it becomes no more serious than it already is. you too will be in my thoughts and prayers.

Eye problems are nothing to mess around with. I'm glad y'all shared your stories, 'cause it appears that I need to be more careful with my eye care (I've had eye problems, too, and I don't want more!). Peaches-n-Cream, I hope you get better soon!

Any cute single ones for MEEE??

HAHAHA Just wanted to make you laugh a little...speedy recovery!

Six different doctors saw me today. The corneal specialists thinks that I am responding very well to the medicine. He reduced one medicine to every three hours, reduced another medicine to every other day, eliminated one completely unless I have pain, and is still keeping me on two eye drops hourly. I don't have to return to the doctor until next Tuesday unless I have a problem. This will take a month or so to cure, but so far I'm improving. My eyes are really sore from all the drops, but I'm not in the pain I was in before this treatment.

Lol Michelle! :p There is one young male resident who might be cute, but I can't really see well enough to tell. He's really nice. :)

Hi Peaches. I'm glad to hear you are getting better. I'm passing this info on to my roommate, because she is experiencing some of the same symptoms. I hope it isn't this, but we are both guilty of poor contact hygiene. I have not taken off my contacts in a week, but I'm definitely cleaning them out today.

I'm back from seeing the cornea specialist. The bottom line is it could take a year for the acanthamoeba to clear up. I had hoped that this was would be finished by Labor Day, but now we are aiming for Memorial Day 2006. Apparently, this is one of the most difficult eye problems to treat and cure. My regular doctor was upset that I have this, and now I know why.

I still must use two drops every hour. The vision in my right eye is very cloudy and looks like steam on a mirror when you take a hot shower except I can't wipe it off my cornea. The doctor is not really concerned since that ought to clear up in about a month. We're trying to avoid a cornea transplant as much as possible so it will be drops galore until I'm well.

I'm trying to figure out a way to incorporate this condition into my life without having it dominate and define me as it has for the past month. I find it very difficult to function and do the things I want and need to do. I haven't socialized since early June so I feel like a hermit. I am trying to be optimistic and patient, but it's very difficult.

I'm looking forward to buying new cute glasses soon since I will not be able to wear contacts until I am cured, if ever.

ETA: The doctor did see an improvement, but it's a very slow process to get rid of this.

Hey Peaches and Cream

Praying for a speedy recovery. I'm a -7.5 (although I do wear disposables - Focus) so I know your pain, especially when having to wear glasses (YUCK - I only wear mine at night). I've been gulity of poor contact hygiene too so this is definitely a wake-up call for me.

Hugs....

Glad to hear you're doing better Peaches! Hope it clears up MUCH sooner than Memorial Day.

Does anyone know what the threshold is for being ineligible for LASIK?

Thanks Honeykiss. You're so sweet! :)

It feels comforting to have so many family members and friends (both real life and cyber) praying for me and wishing me well. I really appreciate it.

I am glad things are headed in a more positive direction for you. Hope to see you out and about soon. As always, let me know if you need anything ;).

Peaches!!!!!!!!

I am praying you get better real soon... haven't been around much..so when i saw this i was super worried!

hope everything turns out ok.. you seriously gave me a BIG wake up call.. i have been wearing contacts since 6th grade and basically am blind as a bat.im -8.00 in both eyes.

i usually always take off my contacts before the shower, but i pop them right back in afterwards, which im sure traps some water.. im also very guilty of not changing my case and cleaning it as best as it should be. i have been noticing signs that my vision is decreasing again which i am not happy about.. i was hoping for my perscription to be stable for a year or more so that my doctor would consider me for lasik. thanks for making me realize how serious eye care really is.

i hope you make a speedy recovery and find some cute glasses too ;)
keep us updated

Bump
 

P-n-C,

Where are you? Are you OK?

You sound like me!


Aww, Peaches, I hope you are doing better... I'll say a prayer for you!

thanks for the bump russ. peaches popped into my mind this weekend and i was wondering how she is. can anyone give us an update?

Thank you for thinking of me and for the well wishes. I'm here in NYC, using my drops, and going to the eye doctors. I have been staying offline lately because of my eyes and vision. I am extremely light sensitive so I sometimes have a difficult time reading the computer screen.

I have good days and bad days. For a couple of weeks, I was having mostly bad days filled with sleepless nights and severe eye pain. Now most of my days are pretty good: I usually sleep through the night and only have mild to medium eye pain. I'm making small improvements daily.

The good news is I am responding so well to the eye drops that they decreased the dosage. I can now go to the doctor every other week instead of weekly. This will be my first doctor-free week which is nice. The cloudiness in my right eye disappeared, and my vision is improving although everything still looks blurry.

The bad news is it will take at least year of treatments. I was hoping the doctor was exaggerating when he said this, but he was not. This acanthamoeba is a very difficult parasite to kill so this will be a long recovery period. These drops are toxic and can cause pain and other problems with the corneas. Unfortunately, they are the only drops that can kill this parasite. The doctors are optimistic, but they still can't tell if I will need a cornea transplant. I hope not.

We'll be thinking of you. Try to drop in whenever you can to let us know about your progress.

Peaches...glad to know that things are going better and the doctors are optimistic...
you will be in my thoughts and prayers.... keep us updated when you can..


lots of love
;)