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I feel your pain, ouchmyeyehurts, I had a cornea transplant on 4/11/06 and have finally been diagnosed with acanthamoeba keratitis after having a biopsy post-surgery. The severe amount of pain I have suffered has changed my life in so many ways, I have re-aligned my priorities. Suddenly the little things just fade away and you focus on health and family.
My problems started in June of 2005 - right after I started using Renu with moistureloc, (mf...) Of couse, I did not make that connection until after I heard about it in the news and went to my cabinet to see what product exactly I had been using. My doctors said the same thing - have you been swimming? In dirty ponds, or rivers? Had I made my own contact lens solution? (i was shocked to hear people really do that).No, no and no. Nothing made any sense. I am a healthy young person with just a slight nearsightedness problem, I don't even really need contacts unless I want to see lots of detail. I am the one in my family who always yelled at my little brother to not sleep with contacts in, to always wash his hands, etc... and ironically this happens to me.
My doctors also could not figure out what the problem was for months. Maybe some kind of keratitis, maybe fungal, maybe a herpes of the eye, nobody really knew so they started treating me for everything. Fungus, Antibacterial, Antibiotics, Anti-parasitics - I was spending about 2000/per month out of pocket in the beginning and I have excellent insurance. My eye was scraped a few times but nothing would grow in the cultures - which is what seems to be the norm from what I am reading.
After finally seeing a doctor who suspected acanthamoeba keratitis, I was rushed to the Mass. Eye and Ear clinic because I was told I was in danger of losing my eye. Once the heavy meds were started that night - I had to put 5 drops in my eye of different medicines at least three minutes apart AROUND THE CLOCK FOR 3-4 WEEKS! So I set up 3 egg timers so that they would wake me up every 20 minutes to start the process of putting in the drops. I was in EXCRUCIATING pain. The kind of pain I would never imagine. I put aluminum foil on all the windows in my home to block the light. My right eye was almost swollen shut most of the time, and of course I was on every pain medicine out there. I could not even function for at least 4 months. No driving, no going outside (too bright), no working, no reading, even TV was too bright to watch. And most of the time I was so sleepy or sick from all the drugs anyway so I just tried to sleep as much as possible.
I became dependant on the pain medicine, I couldn't go without it or I would get sick. And yet it made me feel sick, but helped the pain. From Vicodin to Oxycontin, to Fentanyl patches I was so miserable. One Saturday morning I just said screw this - and decided to go cold turkey off the pain medicine and just try to deal with the pain on my own. So after 7 days of at home detoxing - which was almost as bad as everything else - I couldn't stand the pain any longer and went back on the meds. And again became dependant. And again had to detox a few months later at home when the pain started to subside.
The only way I could describe it to people is it's like someone poured sand on the front of my eye, and then took a thousand tiny needles and stuck them in the bottom and rear of my eye really quickly in and out shooting needle pain, and then put something all the way around the eyeball to put pressure on it, and then did something to make my eyelid swell up and close. pleasant...
I am so grateful to the doctors at UCLA Jules Stein, they have been like a second family this past terrible year. If anyone out there has a similar story you can email me. I have been looking for a support group in my area with little results. Especially if you have had Acanthamoeba, I would love to chat, offer advie, or support. Thanks for reading about my story, sometimes it just feels good to share.
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This is exactly what has happened to me. You just described my 2005 summer completely. It is was a rough year for me. I actually have never taken the time to have the surgery yet and am very blind in that eye.
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I am so very happy to have found two people who have gone through the same thing as me. I too have ancanthameoba keratitis. It happened to my left eye. I have lost all vision in the eye and wear a patch over it and still wear sunglasses almost one year later. I cannot get a transplant until I complete a couple more months of treatment so my chances are are better of not rejecting. I still can't drive. I lost my job. My life will probably never be the same. My insurance premium has sky-rocketed. My infection started only three or four weeks after starting using the moisture-loc solution. I am located in Louisville, KY. I have a wonderful doctor, whom I believed saved my life. Where are you all?
I am still suffering physically, but most of all I can't get rid of this horrible depression. I have no confidence and every aspect of my life has changed. I dont know how much more I can handle. I dont know what I am going to do. I have been borrowing from family to get by. I can't even get unemployment from the state. Where you able to keep your job? Do you get unemployment? Disability? How are you surviving? Samkherm - how was the recovery after surgery? What kind of sight do you have now? Is it painful? Was it outpatient? Have you had any complications?
To warn you both, Bausch & Lomb has contacted me at my home. Sent mailings to get me to sign medical release forms, tried to get information from my doctor without my permission, and best of all, they sent me postage paid material to mail my solution to them. They also tried to pass for the FDA when they called my house. Do not fall for their tactics!!!! Tell them to contact your lawyer and hold on to your solution for dear life!! Call your doctors and share this info with them so they know that they are trying get info without patient permission. B&L needs to take responsibility for their mistake and pay us what we have lost!!
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Bausch and Lomb has also contacted me at my home as well as sent me forms to sign to release my medical records. I was also advised to hang up on them the next time they call and toss there letter away. They are only trying to benefit from this and are trying to keep the litigation down or hidden.
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Please visit Preventblindness.org.
We have a support group called MAAD (Mothers Against Acanthamoeba Disease) under the web forum. Please share your story with our other members. There are more people out there than you realize. It is a devastating infection and my heart truly goes out to all of you afflicted with this infection - us unsuspecting consumers who believe our products are safe.
Prevent Blindness America is in the business of protecting our eyesight. When you visit this site, also please go to the "advocacy" section and urge your representative in your district to sign on to the Congressional Vision Caucus and get HB 2671 passed, crucial congressional action for all of us. Funding for protection of our eyesight has been lacking for years and we need our voices heard to Congress that these issues must stay high on their agenda.
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My daughter feels your pain. She was just diagnosed with this in April11th. She is 20 years old and just a few weeks ago she was a very busy, vibrant college student with so much going on in her life including a trip to Europe. I do not understand how a young girl who the phrase cleanness is close to Godliness is part of her life, and has the most sanitary habits could get this horrifying parasite. Now she is at home having to be withdrawn from school, quit her job, not being able to drive any more and in a lot of pain. I just found out the solution that my daughter was using Equate from Walmart a generate brand.
I see that we are not alone now and would like to assist in trying to form a support group website for all those that have suffered and still suffering with this parasite. Please feel free to respond. We also found out there is another patient that her doctor is treating currently for the same thing.
Please respond back to start a conversation. Thank you
Last edited by toyoungforthis (2007-04-28 10:09:19)
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As I learned much too late, sanitary contact lens usage has nothing to do with getting this fungus. As I worked for an opthamologist for several years, I was very dilligent in sanitary contact lens use. When I got this fungus in April, 2005, nothing had been released about there being a potential problem with the ReNu contact lens solution (even though B & L knew there was a potential problem they were keeping it under a tight lid) my physician was not for sure what it was or what had caused it. This type of fungus usually comes from an injury to the eye, by way of a stick, or some other object...so they were somewhat at a loss as to how I had gotten it, as it is extremely rare. In early 2006 when the news broke that ReNu w/Moistureloc was being pulled from the market, due to a potential link to this fungus, that was when I discovered that the contact lens solution was responsible, as that was the type I was using at the time of my infection. (I still had my unused bottle in the cabinet).
I feel for anyone, young or old, who gets this fungus, as it is very painful and the treatment is very aggressive and expensive. The issue that really bothers me the most, is that companies like B & L are more concerned about their bottom line than the customers they serve. If they knew that there was a problem with their solution they should have immediately pulled it from the market, not played a wait and see game.
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Dear samkherm ( and all others with AK), I've was awke till 5 am this morning reading yours and many other stories about their life after contracting Acanthamoeba Keratitis, tears streamed down my face the whole time, I was diagnosed with AK back in early September 2006 I was the 3rd person in my city to contract the disease ( that I know of) the only difference between myself and your story is that I live in Canada so the problem with contaminated contact solution travelled way past the border and it wasn't B & L I used but Amo Complete contact solution, which was also recalled due to links with AK.
To sum up my life after contracting AK...COMPLETE BLOODY DISASTER....I' a 23 year who had to pu her life on hold because of this company, because its so rare (even rarer in Canada) only a couple of opthalmologists had ever treated it and out of all the trips to the emergency room I made less then a handful of doctors even knew what it was, very frustrating when the doctor your begging to help you needs a lesson from you about the disease. When I first developed symptoms I thought that there was something wrong with my contact lens so I took it out and thought no more of it then that however it progressed so quickly and within 4 days I had a great decrease in vision, I was first treated for a cornea ulcer as well but after 5 days of treatment and no improvement my doctor ( who has been an opthamologist for the past 30 years) suggested right away to do some scrapings which of course came back positive for AK. and then the hell began. Because AK is so rare in Canada we didn't even have the right medication here for the treatment, so I had to apply to health canada to even get the drops brought over the border. I can't imagin having to pay for all this out of my own pocket like you all did, I only had to pay for the medications and even then I figure I've spent about 3 grand, I also had to make 3 trips out of my province to see others doctors with more experience and get guidence about treatment, the last trip I made was to Ottawa where I had my cornea transplant ( I couldn't recieve this type of surgery inj my own province)
my life has changed so much because of this I don't think I'll ever be the same, in the beginning I had to quit my job, I had to drop out of school, I lived in a dark room for months drowning myself in eye drops, the pain was so severe that I dropped down to 94 pounds and was so physically exhausted that I couldn't even feed myself. I seen my surgeon every second day, I had almost every symptom of AK, PAIN!!!! swollen upper lid, redness, tearing, redness, it felt like there was a piece of glass in my eye, itching, extreme sensitivity to light, burning.....not to mention how much it hurt to even put in the drops (especially Brolene and PHMB) I felt so alone, no one around here knew what it was and no matter how many people I begged to help me they all said the same thing, keep putting in the drops there is nothing else we can do right now. the hospital wouldn't admit me in, which was just as well I guess considering no body had any knowledge of it anyways. for seventeen months I suffered through this, and even though I had so many supportive people around me and no matter how much about AK they had learned in a desperate attempt to help them understand what I was going through when I talked/vented to people their expression was always the same because unless you had AK there is no way you could understand how it affects your life. There is a class action now against AMO, which I am apart of but I just feel that there is no amount of money that they could pay me to make me say it was worth it, what this compnay has taken away from me they'll never understand. was there a class action against B&L? if so how long did it take to settle? I truly believe that this disease only happens to those who are strong enough to pull through it, and even though I'll admit that I had weak moments where I just wanted to be put out of my misery and end it all, we should all take some satisfaction from the fact that there are very few people who could have done what we have done, and that is come out of this with at least some out sanity intact. if anyone out there would like to share there experience with me I would love to hear it, knowing that the person your talking too actually really understands what your talking about is priceless. sorry this is so lengthy but thanks for taking the time to read and I would love to hear from any of you, take care Ashley (algreening@hotmail.com)
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Guys I read some article about Lasik and I want to share this to you. Since im also planning to undergo an eye surgery in a couple of months from now but I have a diabetes I hope this can also give you some info about Lasik. Just in case you want to have a vision correction in the near future without the help of glasses or contacts. Anyway, Lasik stands for Laser-Assisted In Situ Keratomileusis. The LASIK procedure is a precise and controlled removal of corneal tissue by a special laser that reshapes the cornea in order to change its focusing power. To be considered for this surgery, a technician must first scan your eyes in order to create a detailed map. By doing this, he or she will be able to adjust the laser to your exact requirements in order to determine whether or not the surgery is possible. You can also see more complete information about the Lasik in www.my2020.com
Last edited by mystoryforu (2008-01-09 13:32:27)
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I suffered for almost 16 years of my life having a hard time to see and wearing those thick glasses that made me like a 50 years old loser. I had my astigmatism when I was young (back in my adolescent’s stage) then last year I decided to be free, free from glasses and contacts that’s been part of me for almost 16 years. Im sick and tired of having a limitation in all things that I do, especially with my favorite sports and doing some stuff, my Astigmatism was really a hindrance to me not only in my passion but in my work, So last year as a thanks giving gift to myself I fly to Kansas to have a Lasik exam in my2020 to determine if im a good candidate and fortunately I was. Right now I can say that im in the process of healing the side effects of it (and its normal) and I feel good and great about myself not wearing those contacts and glasses anymore. Its nice to live like a normal being. just visit them in http://wwwDOTmy2020DOTcom
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I had also been diagnsed with acanthamoeba keratitis...unfortunatly diagnosed 1 moonth late so mycase was probably the worse.. i had to put drops in every 30 mins ..for 2 dyas straight...so wen i would fall asleep a nurse would wake me up..I'm only a senior...in high schooL! so, i didint go to school and had ot get tutors. basically, i had ot quit all sports or activities. i wasnt able to continue things i were doing. ...still on treatment ( 7 months passed..) ...really dont know what is going on..i dont even have insurance to cover all the costs ...so currently deprivedd of education and medical treatment ...=/ ....i cant see from my left eye.wen i first got out hte hospital for the 2 months i was on narcotics to relieve pain and slept for all that time ..................i know many cases usually arent this bad....i never knew such a little thing can change my life...literally forever! ( couldnt tkae the SAT2 ..apply to the colleges i wanted..draw wut i neded to apply and etc) .... -.-
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I'm so glad to find this forum! My daughter is going through a similar situation, She is 18yrs old and a senior in High school. She developed what we thought was a pink eye back in 9/10, so far she has been treated with everything from Antibiotics to anti fungals without success. Finally after six long months and the 4th cornea biopsy she was diagnosed with Acanthamoeba Keratitis. We just started the treatment with PHMB and other drops that are given every hour around the clock. Can you please tell me what was your infection treated with? and how long did you had the infection before they were able to diagnosed it? and how long did you had to wait before your cornea trasplant? my daughter is also a patient @ Jules stein eye institute @UCLA as well as Kaiser patient. Any advice that you can provided will be greatly appreciated. Thank you
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