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Eye tearing was actually chronic gram negative bacterial infection

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  • Eye tearing was actually chronic gram negative bacterial infection

    The gist of my story here is that I was living with tearing and eye issues for years. Doctors and Ophthalmologists diagnosed it as "dry eye".
    Just had an eye swab 2 weeks ago, and it was a gram negative bacterial infection -- something that has been chronic for YEARS. And this wasn't something new or recently acquired. I've been living with it for more than 22 years, and no doubt have been infectious to others in that time -- direct touching or even indirect touching with shared surfaces like door knobs, cups, pens, etc.

    For a full story of my history, check out my 1st posts. But i'll recap here:

    Basically, I had an eye infection in 1997. Went to the doctor, was given antibiotic eyedrops. 2 weeks later, still waking up with my eyelashes gunked shut in the mornings. Went to the clinic again, the doctor gave me a different eyedrop. She said tersely "only for a week", like I should feel guilty and thankful I was getting antibiotic eyedrops in the first place. Doctors are very reluctant to give antibiotics out, and she made it perfectly clear with her voice that I was getting them reluctantly.

    2 weeks later, still infected. A month later, by then, it was already my new "normal" that I would wake up and wash the gunk away in my eyelids and eyelashes.
    Long story short, I was very busy at work. We would have monthly deadlines, and i'd be at work sometimes till 10pm, only to leave work, and come back early the next morning. I simply did not have time to keep running back and forth to the doctor waiting for an hour or more, wasting money on eyedrops that didn't work. And after the 2nd time nothing worked, that was it. I gave up. And just got used to my eye tearing and washing my face several times through the day. After washing my face, my eyes would feel "clean" and light. Then, as the gunk built up gradually, making my eyelids heavier and heavier maybe 1-3 hours later, i'd visit the washroom, and do another wash. And repeat. This is how I managed it -- for the past 22 years.

    I noticed several people around me -- colleagues/coworkers, family and friends would sometimes come down with eye infections. It took several years for me to make a connection between me, and people getting eye infections. Maybe they wouldn't get a full-on eye infection. Maybe they would just complain of burning eyes. Maybe they would get a thick red vein in their eye, that would not go away. Or maybe they would get red eyelid margins. I started writing down dates and people effected. And I told my family doctor. He did an eye swab. The test came back negative. He laughed at my eye concerns that it could be contagious.
    And down the rabbit hole I go.

    I visited Ophthalmologist No. 1 in 2007.
    She didn't identify anything. I complained about the tearing. The first thing she thought, was dry eye syndrome.

    Fast forward to about 2014. I have a new family doctor.
    He sends me to Ophthalmologist No. 2.
    That Ophthalmologist did a tear duct test.
    To rule out the tearing isn't something more serious, like a clogged tear duct or maybe a tumor obstructing the flow of tears. He also did a swab test. It came back negative. I mentioned to this Ophthalmologist about my concerns it was contagious and my examples of several people coming down with eye issues around me. He then says "Well if you go around TALKING ABOUT IT ALL THE TIME". I've mentioned my eye concerns to a total of 8 people (all medical professionals) over the past 12 years. If anything, my problem is that I wasn't talking about it at all. I was keeping it bottled up. I didn't want to burden people constantly talking about my eye problems. Or instigate myself for their eye problems they might be having now.
    Again, I'm in the twilight zone.
    No one was believing me.

    Those results were sent to my doctor. That Ophthalmologist diagnosed me as having "dry eye", and wanted me to get the Lipiflow treatment, which costs $1000 CDN (I'm Canadian).
    I said no, because i read a hot compress/warm wet washcloth will do basically the same thing -- if I had MG disfunction, to melt the "fats" clogging the MG, it's a lot like warming up butter -- you just need to apply a hot compress long enough to "melt" the fats clogging the MGs. 6 minutes at 40 degrees celsius, which you can do easily in a bathtub or sauna.

    I saw another Ophthalmologist No. 3 in my city a couple years later. She did the same tear duct test, to rule out the tearing might be from something more serious like a tumor or tear duct obstruction. The saline solution poured back out. And she concluded I had a tear duct obstruction. She wanted me to make an appt for me to do a LacriCATH probing at the Hospital -- a minimally invasive surgical procedure. It's minimally invasive -- but still invasive. There could have been bleeding -- no doubt scarring. I declined. It was too much of a shock for me, and I honestly did not think I had a nasal lacrimal duct obstruction. If I did, it would hurt. I would know it just by feeling it -- it would be like a big red sore on my face.

    Those results were sent to my family doctor. He then made an appt for me to see a ENT specialist (Ear, nose and throat). That doctor was ready to do X-rays and said he'd be doing "lots of work on me". This was for surgery on the nasal cavities. It wasn't funny anymore. I also mentioned my eye concerns to this doctor. He then says "well there is the power of suggestion", to suggest that my "eye concerns" were just me being paranoid and that I'm going around talking about it constantly. He did a swab of my nasal passages in case there was a fungal infection -- something that hadn't been tested for.
    It came back negative.

    Now my family doctor had test results that were negative for bacterial and fungal infections from two specialists, and a letter stating I had a tear duct obstruction from another. Nothing explained why people around me were getting eye infections, and complaining about burning eyes, tearing eyes, veiny red eyes, etc. It was like I was so frustrated with no one to help me.
    My family doctor also sent me to an internist -- a specialist for medicine. I told him all about it. His line of questioning was all focused on my hygiene.
    By the end of our long talk, his only advice was to "wash my hands more".

    I also phoned the nurses line 2 times, because there is no way to actually talk with a microbiologist or epidemiologist directly -- they don't see people/patients.
    None were able to help me -- it's like every avenue to get help all came to a dead end.

    From then on, my family doctor did not believe me that I might be "contagious". It was a horrible feeling. My own family doctor didn't believe me. He called my eye concerns "an obsession" -- I mentioned my eye concerns a total of 3 times. And he said the next specialist appointment he makes for me will be with a psychiatrist.

    I shut down.
    I didn't do anything.
    I just lived with the tearing, as I have for the past 22 years. I saw another friend of mine come down with an eye infection and his eye is red now. Even months later, he's putting in lubricating eye drops. It was really getting to me. And I wanted to know what was going on. I even considered going to University to become a microbiologist. If no one knew what this was, then I had to take matters into my own hands.

    So this spring (2019), a year after the (questionable) diagnosis I had a "naso lacirmal duct obstruction", I finally got my family doctor to make an appt for me with an Ophthalmologist in another city, as our city only has 2, and I had saw both. I did the research and found the clinic, and I had to tell my family doctor where it was. I was really taking matters into my own hands now. I just don't trust anyone anymore -- even doctors and specialists.

    3 months later, I finally saw Ophthalmologist No. 4. He did the tear duct test, and the saline solution poured back into my throat -- there was NO obstruction after all.
    I was wrongly diagnosed by Ophthalmologist No. 3 as having a tear duct obstruction. She had incompetently put the probe in wrong.
    It's not funny. She wanted to do minor surgery on me. I was sent to an ENT. I was looking at serious surgery.

    Ophthalmologist No. 4 gave me Systane, an eye lubricating drop -- because again, all he thought I might have was dry eye.
    I used them a couple times. It didn't improve my tearing at all -- if anything it made the tearing worse and the "gunkiness" and heaviness of my eyes worse. I came across on a website on the internet, that if you use Systane, and your eyes get "worse", to stop it immediately, because that could be an indication of a bacterial infection.
    What also clicked in my head, was how abnormal I was to constantly wash my face every 1-3 hours just to feel "normal". It dawned on me, there are people who don't even wash their face for days.

    My eye issues were also controlling my life. I was invited by family to go camping this summer. And I didn't go. Only because I knew that when you are camping, you have less opportunities to wash your face with warm/hot water every couple hours when you are roughing it in the wilderness. And as I explained in earlier posts, I almost self-isolated myself. I would try not to touch people. Or hug. I was less social. It's been horrible. And the worst was it seems like no one believed me what I was observing -- I counted more than 40 people who had come down with eye infections or eye afflictions (tearing, burning, redness, etc) that were close to me.
    The doctors and specialists didn't seem to care. They had the results that said it wasn't an infection. I was just a psycho boy in their eyes.

    So I decided to stop washing my face for a day or two. When I got for a day without washing my face, and the eyes, it's an uncomfortable feeling, as the eyelids get heavy and I can't function normally without being conscious of them.
    And sure enough, the gunk started to build up around my tear duct and my eye lashes looked stuck together. It wasn't extremely bad, but just enough to be noticeable upon close inspection. That's how I would describe this -- as a low-level infection. I could almost be considered "asymptomatic", except for how it feels. Ophthalmologist No. 3 even said my eyes "looked healthy".

    I tried making an appt. with my family doctor -- the same guy who said i should see a psychiatrist about my "eye obsession", but it was 7 days wait for the appt.
    And I didn't want to wait any longer. So I went to a walk-in clinic and saw a doctor there. He immediately looked at me, and said I had a bacterial infection.
    He did a swab. He told me I could get the results in 2 weeks.
    It was the longest 2 weeks of my life.

    So I saw the same clinic doctor 5 days ago for a follow up for the results. I was extremely anxious. I thought maybe he'd tell me like the other doctors there was nothing -- everything negative and that I really was just a paranoid delusional.
    I was nervous.

    He brings up the results on the computer screen, and tells me I have a gram negative bacterial infection (and another one I can't remember the names). Gram negative bacterial infections are NOT as common as gram positive bacterial infections, and can be chronic because your body can't get rid of them. It would explain why the 2 different antibiotic eyedrops given to me 22 years ago didn't work or do anything for me. It would also explain why the 2 cycles of minoycline i was one for 2 months in the past 2 years also didn't do anything. It also didn't help that the doctors didn't care about my concerns either.

    I'm currently doing anti-biotic eye drops that treat gram negative bacteria. We'll see how it goes.
    22 years later, and this story isn't over yet.

    The take away here, is that eye swabs ARE NOT 100%. (And NO, I didn't just acquire a new infection where the recent swab picked it up.)
    Specialists like Ophthalmologists are sometimes wrong -- get second opinions.
    None of the doctors -- including the Ophthalmologists -- told me NOT to wash my face.
    They SHOULD HAVE told me to let the bacteria "fester" a bit for 1-2 days and let it build up, so that when they do the eye swab, they have more bacteria to swab to culture with. But none of them did.

    I'll update this when I know more. It's not over yet.

  • #2
    Good luck with your treatment. Tearing is very annoying and hopefully this treatment plan will work. I had tearing problems twice. One was caused by a blocked tear duct and one was caused by loose conjunctival tissue. For the blocked tear duct I needed a stent placed in my tear duct for 3 months and for the loose conjunctival tissue I needed amniotic membrane transplantation surgery.
    My tearing was resolved in both cases.


    • #3
      Hi wakeupscreaming, thank you for you post! It make me think about my condition:
      Can you be more specific on which bacteria did you test?
      When you say tearing, you mean excessive tearing or low tearing? I'm not english so I am not familiar with medical terms.

      After 5 different opthamologists, I know for sure only these things:
      1) I have follicular hyperthropy in conjuntiva. It is an "allergic reaction" that can be realted to allergies but it is also can be related to bacterial infections.
      - Common allergies path: I did all kind of allergic test and I'm allergic only to spring allergies and cats/dogs, nothing that can explain a 2+ years of chronic reaction. Classic oral antihistaminic / antihistaminic eye drops doesn't work. The only thing that works are mast cell stabilizer eye drops (ketotifen, nedocromil).
      - Bacterial infection path: an ophtamologist made me take swab test for: 1) bacterial culture 2) mycetes 3) chlamydia trachomatis. results all negative. I don't know if they are gram positive or negative. PS: the lab said to stay 3 days without putting anything in my eyes before taking the swab.
      2) I have a low schirmer test score: I did it 3 times in two years, it oscillated from 0 to 5mm max.

      I think that there are two possible explanations, but I'm not a medic:
      1) I have a "low-level" bacterial infection, because my eyes seems asymphtomatic and also eye doctors said that the eye is in good condition except for puffy eyelids. It could be the cause of a low tearing.
      2) For unknown reason I have low tearing, and tears contains a natural anti-bacteria. So no tears means growth of bacteria in my eye. Mast cell stabilizer eye drops makes the eye inhospitable for bacteria and they stabilize the eye condition.

      If you can be more specific on which swab tests you did I would be very grateful.
      Could you also update us on how it is going your therapy?


      • #4
        I remember your case and you saying you felt you had some chronic infection. Very glad to hear it sounds like you are finally starting to get some answers! How ridiculous is it that it took so long? The health care system is so awful now, I have had very poor treatment like you mention as well, even with problems that are super easy to diagnose, have been led to believe it was all in my head too for years on end when simple tests would have caught them. It is just outrageous that you had so many around you exhibiting similar issues and they can't even piece together there's some common infection among you all!! I can relate to what you say too about being less sociable, not wanting to hug people, not wanting or really even being able to go on certain trips...I can't go camping either...I can't travel for say a whole day without needing to rinse my eyes somewhere either.

        The last week or so I have had increased tearing am starting to think I now do have an infection, I don't know how to get someone to actually run tests on my eyes to find out if there is one and what kind. You'd think if you paid eye care people to look at your eyes that if you asked they'd run the tests but oh no, even then they can't be bothered. I was going to look up to see if there aren't home testing kits for this now. I'm nearly at the "become your own microbiologist" point myself.


        • #5
          wakeupscreaming, did the anti-biotic eye drops cure the gram negative bacteria infection?



          • #6
            Hi wakeupscreaming , how is it going? are you feeling better?


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