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  • #31
    My eyes are extremely watery! They're so watery I have a hard time talking to people face to face. They also burn at times. When I wake up in the mornings I have tons of crusties all over my eyes as-well. My eyes are very red and bloodshot too. My right eye seems to be slightly worse than my left. I seem to have worse days then others.

    I started taking Doxycycline which helped dramatically for the first 2 days. After the first two days, I've been back to having an extremely hard time again.

    Ever since this started I have had bad black bags underneath my eyes. I'll never forget waking up on August 26th of this year looking into the mirror seeing these black bags for the first time. My heart dropped because I felt like it wasn't a quick fix. I look extremely tired 24/7. This bothers me the most out of all of this. I'm a very fit guy working in the fitness industry with black bags underneath my eyes. I feel like my reputation is diminishing.

    Part of me feels like this is some type of deficiency in something.. I need to get blood work done. Most importantly, I need a doctor that cares.

    Comment


    • #32
      Originally posted by sdeneve View Post
      My eyes are extremely watery! They're so watery I have a hard time talking to people face to face. They also burn at times. When I wake up in the mornings I have tons of crusties all over my eyes as-well. My eyes are very red and bloodshot too. My right eye seems to be slightly worse than my left. I seem to have worse days then others.

      I started taking Doxycycline which helped dramatically for the first 2 days. After the first two days, I've been back to having an extremely hard time again.

      Ever since this started I have had bad black bags underneath my eyes. I'll never forget waking up on August 26th of this year looking into the mirror seeing these black bags for the first time. My heart dropped because I felt like it wasn't a quick fix. I look extremely tired 24/7. This bothers me the most out of all of this. I'm a very fit guy working in the fitness industry with black bags underneath my eyes. I feel like my reputation is diminishing.

      Part of me feels like this is some type of deficiency in something.. I need to get blood work done. Most importantly, I need a doctor that cares.
      If you can get over and see dr cremers or dr korb, those are two amazing doctors. Pedram hamrah is another great doctor. I see Pradeep Jain at UIC.

      You coukd be right, coukd be a low test issue or something just stupid like the way you’re sleeping. I wish you luck. Sorry it took so long to respond, have been mentally feeling down lately.

      Comment


      • #33
        Originally posted by Dowork123 View Post

        Doxy has been proven safe In the literature for rosacea patients at doses of 200mg a day for up to a year. I think you should just take it forever.

        I’m not saying your mentally ill....


        So you’ve had this for 20 years? May I ask, do you snore? Are you overweight? Do you sleep on your side/stomach? Do your eyes hurt worse in the morning or as the day progresss at night?



        Hi,
        Uhh, I live in Canada. I'm pretty sure Canada has a little bit more sensitivity to taking antibiotics than the U.S. has.
        Our doctors are trained to only prescribe antibiotics if patients really need them. In fact, when I was on the minocycline (similar to doxy), I had another doctor tell me to immediately stop them. Everytime you take antibiotics, you increase the chances of creating a superbug that doesn't respond to the antibiotic you were just taking.
        You must be aware of the superbugs and strains of bacteria that no longer respond to several antibiotics? Like MRSA?
        This is caused by antibiotic overuse.
        You must be aware of this? So no, taking minocycline or doxy forever is not an option. It's very irresponsible, and might even cause a much more serious problem.

        Uggh, I'm not mentally ill at all. I wish I were lol. I'd probably have more fun in life.
        It was my current family doctor who said to me, that if I mention my eye problem again to him (I had only mentioned it 3 times), he'd make an appointment for me to see a psychiatrist.
        It thought it was disrespectful of him to say that.
        I get that doctors are probably dealing with legit people with mental health issues throughout the day, and i'm another patient they see for less than 5 minutes.
        I don't have mental health issues. Never been on anti-depressants or anxiety medz ever in my life.
        I had a different family doctor in another city I lived in for 14 years. That family doctor was amazing. And in 14 years, he never suggested I was mentally ill...ever.

        My current doctor might have been joking when he said he'd make a psychiatrist appt for me -- but he didn't laugh. I'm thinking he just ran out of ways to help me, and didn't know how to express his frustration professionally that he didn't know the answer to my problem. I don't have much choice in a smaller town to get a different doctor. My current doctor happens to be from Libya. And out of the handful of new doctors accepting new patients in my town, they are all from the developing world. That's modern Canada for you.

        Yeah, i've had this eye problem for 20 years. It all started when I moved in with a roommate in my 20's. I had no eye problems before then. He didn't have the best hygiene. I didn't realize this until afterwards. It all started with an eye-infection. I went to the clinic, they gave me antibiotic eye-drops. 2 weeks later, didn't work, still waking up with my eyelids crusted and stuck together. I go to the clinic again, they give me a different antibiotic eyedrop. 2 weeks later, it is still not working. And at that time in my 20's having just moved to another city, I didn't have a family doctor, so I just left it at that. I learned to "manage" the eye infection. But I do look back and regret not having s family doctor document how long I had that eye infection, because no doctor believes me now when I say that it lasted for more than a year and a half.
        I walked around with kleenex in my pockets, because my eye was constantly tearing and gunky.
        The doctors all say "oh, it should have cleared up after a couple weeks". Nope. It didn't.

        I might snore every now and then. I'm 6'5" and 200lbs. No, i'm not overweight.
        I sleep on my side and stomach.
        My eyes don't necessarily "hurt". My eye problems include: chronic tearing/discharge, photophobia, occasional burning, foreign sensation. For ex. when I lose an eyelash, I am hyper aware of it. I can't ever remember being so aware of lost eyelashes in my youth or in my 20's -- it wasn't even an issue.
        They feel gunkier when i've just woke up. Then i'll have my shower/bath, and they'll be good for a couple hours. Throughout the day, they'll feel heavier and heavier. I'm splashing warm/hot water on my face every 3-4 hours throughout the day -- every day. And have been for years and years. It's the only way to alleviate the heavy eyelid feeling.

        Anyways, I realize you're trying to help, but seriously, I do think whatever situation I have with my eyes, it is contagious. I've documented people effected by it more than 32 times. How many times does it have to happen, to be certain it's not random? 100 times? 1000 times?
        Problem is, there is no name for it, no understanding, and certainly no "cure" for something science doesn't know anything about.

        I'm considering my options to try to prove it exists, and find out what this is -- and how to manage or cure it.

        Comment


        • #34
          Originally posted by Dowork123 View Post

          Well, let me say this and it’s not to be a downer. I don’t think you’ll know if the spirolactone is causing the issue until you stop taking it and treat the testosterone deficiency. If that sends you back to your old state of not so bad eyes, I’d say you’re 100% correct. Also, it could be contagious, you’re right. But I don’t think the evidence you presented has proven that. I agree that from your perspective, this seems insane. But let me say, as an ex bodybuilder, it’s not surprising that guy got pink eye lol. Especially as an exotic dancer. He puts his face in a woman’s crotch, boom. The people in your office, work in computers all day so I can’t count them. The guy on disability, I’m assuming he’s sick but yes that’s weird. But does this stuff really imply causation. It doesn’t for me...and again, I’m not trying to be a Debbie downer, I just want to be honest so we can focus on your problem.

          Your issue with the sinus sounds very much like me. I think yes, you clearly have MMP9 inflammation if the minocycline worked. Doxy has been proven safe In the literature for rosacea patients at doses of 200mg a day for up to a year. I think you should just take it forever. Start high and then taper into a dose that’s effective and lower than 200mg. I think it’s safe, I’ve been on 200mg for a while and like you said, it changed my life. I won’t stop taking it. I’ll eventuakly lower my dose because we’re attacjing my problem now thank god. But I hated the idea of being on it, but it will help so why fight it? So I say take it, at least until you get a real diagnosis.

          Which leads to dry eye specialists. All the good ones I know are in the United States. The guy at UIC that diagnosed me did a fantastically thorough job. If anyone would have just checked for this eyelid issue, I wouldn’t have suffered for a year. Anyway, they did A LOT of testing. They also track my immune markers to make sure treatment is working. They are just giving people restasis and calling it a day. They’re using medicine and then taking the diagnostics to determine of the treatment is effective. That’s the doctor you need. Have you ever had a TBUT, lissimine green stain, inflammadry, osmolarity, LLT, tear meniscus height, lipiview, schirmers, immune marker washes? If you haven’t had these tests, most likely the doctor treating you has no idea what they’re doing. Even with the testing there’s no guarantee...but without it, you’re throwing darts at a wall and praying. You need a specialist, you may need to leave your country.

          Now im bipolar, so I get the mental illness thing. I’m not saying your mentally ill, but I’m not taken seriously because people think I’m exaggerating my symptoms. It was very clear after I started my treatment at UIC, this was not an exaggeration. So I think sometimes trying to get answers, we get in our own way. Coupled with the fact that the doctor has no idea how to help you, it’s easier for them to say you’re crazy. Because you are crazy, you’re experiencing constant annoying pain. I get it. Most people cannot understand it, even the doctors. So that’s what you’re dealing with as you’re finding out.

          Ill give you you my quick story. I felt just like you, probably saying some wild shit. I thought I had nerve damage, I though I had thyroid disease, I thought I had 20 things and I had 20 theories no how it happened and it was all wrong. I could have NEVER figured this out in my own. So...I have floppy eyelid syndrome. I’ve had it for years now that I look back. Once we treated the condition, I finally got better. But this disease presents as advanced MGD, but if you treat it like that, you get no relief. I can attest to that being true. So my point is that I think you just need to find the root cause. Could be blepharospasm, lagopthalmos, floppy eyelid, etc. but you need a solid diagnosis to direct treatment.

          So you’ve had this for 20 years? May I ask, do you snore? Are you overweight? Do you sleep on your side/stomach? Do your eyes hurt worse in the morning or as the day progresss at night?

          Lets try try to work this out. Let’s try our best to barrow this down.


          "Your issue with the sinus sounds very much like me. I think yes, you clearly have MMP9 inflammation if the minocycline worked."

          Can you explain what you mean by MMP9 inflammation?
          OK, so what's causing the inflammation to begin with?

          I wasn't aware I had an issue with my sinuses. It was the Opth doctor that concluded (I believe wrongly) that I must have a clogged up sinus that's causing the eye tearing. She did the little probe test, where she sticks the needle-like straw into my tear duct of my eye, to see if the saline solution goes into my throat, or comes back out. When she did it, it just ran down my face -- which suggests there was a clogged sinus passageway.
          Thing is, I've had the same test done by 2 other opth dr's (3 years before), and both times it went down through the sinuses and into my throat -- it was not a clogged sinus. Nothing had changed -- I still have the same symptom of tearing eyes.

          I believe the most current Opth doctor did the test wrong -- the way she put it in, or something. So she concluded that my sinus MUST be clogged, and then sent me off to a ENT (Ear Nose and Throat) specialist, with intentions of surgery. Yeah....surgery. So I went to see him, not really knowing what he was gonna help me with, and we talked, and he said he'd need xrays of my head -- for a start. You know, before they do SURGERY.
          And that's when I knew I was in the wrong place. It was like I was in the twilight zone or something.
          And this was all from the wrong diagnosis from the Opth doctor who did her test wrong. 2 of those tear duct tests were negative from 2 other doctors.

          After the ENT specialist told me to get xrays, I was out of there. I haven't gone back since.

          I had read about minocycline before I requested it from my family doctor, and it was described as "we don't know how it works, but it reduces inflammation and helps your dry eye, blah blah". That was paraphrased from a medical online journal.
          i was assuming the antibiotic might work by reducing the amount of bacteria which would help with clearance of the tears, and maybe of any opening or passageways -- including the MeibnGlnds. I mean, they don't even know how it works -- they just know that it does work.


          Sorry to hear about your Floppy eyelid syndrome. Again, it must be frustrating managing it. It seems like Opth doctors are specialized with the actual eyeball, but so much isn't known about the exterior lube system of the eye. There almost should be doctors that just specialize in the outer eye system, because so much is unknown.

          Comment


          • #35
            You just contradicted yourself, so I stopped reading. If you have eye problems this bad, you need the antibiotics. You referred to MRSA, are you aware of what that acronym stands for? Methicillin resistant staph aureus...MRSA is bacteria resistant to the antibiotic methicillin. You will not create mrsa by taking doxy. You could get ulcerative colitis, doxy isn’t risk free, but please educate yourself about antibiotic resistance. Doxy is safe given this circumstance, period. Steroids are dangerous too, should I stop taking them and become disabled and suicidal? You have to weigh the risks, if you’re worried about a super bug, that’s your business, but you’re going to needlessly suffer because of that thought.

            Also, as someone who’s mentally ill, no, you would not have more fun in life. Don’t discount the mental illness, I’m secure everyone on this site suffers from some type of mental illness or compulsion. That’s not to say they’re exaggerating symptoms, not at all. I’m saying most people wouldn’t invest the time we do into this research. I’ve met people in way worse pain who had never looked up this information. So maybe you should see s psychiatrist. Not for a mental illness, but at the very least to help you mentally navigate the dry eye.



            Originally posted by Guest View Post




            Hi,
            Uhh, I live in Canada. I'm pretty sure Canada has a little bit more sensitivity to taking antibiotics than the U.S. has.
            Our doctors are trained to only prescribe antibiotics if patients really need them. In fact, when I was on the minocycline (similar to doxy), I had another doctor tell me to immediately stop them. Everytime you take antibiotics, you increase the chances of creating a superbug that doesn't respond to the antibiotic you were just taking.
            You must be aware of the superbugs and strains of bacteria that no longer respond to several antibiotics? Like MRSA?
            This is caused by antibiotic overuse.
            You must be aware of this? So no, taking minocycline or doxy forever is not an option. It's very irresponsible, and might even cause a much more serious problem.

            Uggh, I'm not mentally ill at all. I wish I were lol. I'd probably have more fun in life.
            It was my current family doctor who said to me, that if I mention my eye problem again to him (I had only mentioned it 3 times), he'd make an appointment for me to see a psychiatrist.
            It thought it was disrespectful of him to say that.
            I get that doctors are probably dealing with legit people with mental health issues throughout the day, and i'm another patient they see for less than 5 minutes.
            I don't have mental health issues. Never been on anti-depressants or anxiety medz ever in my life.
            I had a different family doctor in another city I lived in for 14 years. That family doctor was amazing. And in 14 years, he never suggested I was mentally ill...ever.

            My current doctor might have been joking when he said he'd make a psychiatrist appt for me -- but he didn't laugh. I'm thinking he just ran out of ways to help me, and didn't know how to express his frustration professionally that he didn't know the answer to my problem. I don't have much choice in a smaller town to get a different doctor. My current doctor happens to be from Libya. And out of the handful of new doctors accepting new patients in my town, they are all from the developing world. That's modern Canada for you.

            Yeah, i've had this eye problem for 20 years. It all started when I moved in with a roommate in my 20's. I had no eye problems before then. He didn't have the best hygiene. I didn't realize this until afterwards. It all started with an eye-infection. I went to the clinic, they gave me antibiotic eye-drops. 2 weeks later, didn't work, still waking up with my eyelids crusted and stuck together. I go to the clinic again, they give me a different antibiotic eyedrop. 2 weeks later, it is still not working. And at that time in my 20's having just moved to another city, I didn't have a family doctor, so I just left it at that. I learned to "manage" the eye infection. But I do look back and regret not having s family doctor document how long I had that eye infection, because no doctor believes me now when I say that it lasted for more than a year and a half.
            I walked around with kleenex in my pockets, because my eye was constantly tearing and gunky.
            The doctors all say "oh, it should have cleared up after a couple weeks". Nope. It didn't.

            I might snore every now and then. I'm 6'5" and 200lbs. No, i'm not overweight.
            I sleep on my side and stomach.
            My eyes don't necessarily "hurt". My eye problems include: chronic tearing/discharge, photophobia, occasional burning, foreign sensation. For ex. when I lose an eyelash, I am hyper aware of it. I can't ever remember being so aware of lost eyelashes in my youth or in my 20's -- it wasn't even an issue.
            They feel gunkier when i've just woke up. Then i'll have my shower/bath, and they'll be good for a couple hours. Throughout the day, they'll feel heavier and heavier. I'm splashing warm/hot water on my face every 3-4 hours throughout the day -- every day. And have been for years and years. It's the only way to alleviate the heavy eyelid feeling.

            Anyways, I realize you're trying to help, but seriously, I do think whatever situation I have with my eyes, it is contagious. I've documented people effected by it more than 32 times. How many times does it have to happen, to be certain it's not random? 100 times? 1000 times?
            Problem is, there is no name for it, no understanding, and certainly no "cure" for something science doesn't know anything about.

            I'm considering my options to try to prove it exists, and find out what this is -- and how to manage or cure it.

            Comment


            • #36
              Originally posted by wakeupscreaming View Post



              "Your issue with the sinus sounds very much like me. I think yes, you clearly have MMP9 inflammation if the minocycline worked."

              Can you explain what you mean by MMP9 inflammation?
              OK, so what's causing the inflammation to begin with?

              I wasn't aware I had an issue with my sinuses. It was the Opth doctor that concluded (I believe wrongly) that I must have a clogged up sinus that's causing the eye tearing. She did the little probe test, where she sticks the needle-like straw into my tear duct of my eye, to see if the saline solution goes into my throat, or comes back out. When she did it, it just ran down my face -- which suggests there was a clogged sinus passageway.
              Thing is, I've had the same test done by 2 other opth dr's (3 years before), and both times it went down through the sinuses and into my throat -- it was not a clogged sinus. Nothing had changed -- I still have the same symptom of tearing eyes.

              I believe the most current Opth doctor did the test wrong -- the way she put it in, or something. So she concluded that my sinus MUST be clogged, and then sent me off to a ENT (Ear Nose and Throat) specialist, with intentions of surgery. Yeah....surgery. So I went to see him, not really knowing what he was gonna help me with, and we talked, and he said he'd need xrays of my head -- for a start. You know, before they do SURGERY.
              And that's when I knew I was in the wrong place. It was like I was in the twilight zone or something.
              And this was all from the wrong diagnosis from the Opth doctor who did her test wrong. 2 of those tear duct tests were negative from 2 other doctors.

              After the ENT specialist told me to get xrays, I was out of there. I haven't gone back since.

              I had read about minocycline before I requested it from my family doctor, and it was described as "we don't know how it works, but it reduces inflammation and helps your dry eye, blah blah". That was paraphrased from a medical online journal.
              i was assuming the antibiotic might work by reducing the amount of bacteria which would help with clearance of the tears, and maybe of any opening or passageways -- including the MeibnGlnds. I mean, they don't even know how it works -- they just know that it does work.


              Sorry to hear about your Floppy eyelid syndrome. Again, it must be frustrating managing it. It seems like Opth doctors are specialized with the actual eyeball, but so much isn't known about the exterior lube system of the eye. There almost should be doctors that just specialize in the outer eye system, because so much is unknown.
              There isn’t always a clear cause of the inflammation. MMP9 is an inflammatory marker found in people with eyelid disease or dry eye. So if you took doxy and it Helier, it’s prety certain you had MMP9 inflammation and the doxy is controlling it.

              Comment


              • #37
                Originally posted by Guest View Post
                Uhh, I live in Canada. I'm pretty sure Canada has a little bit more sensitivity to taking antibiotics than the U.S. has. Our doctors are trained to only prescribe antibiotics if patients really need them.
                I'm Canadian too. However, physicians in the U.S., are also trained to only prescribe antibiotics for patients who actually need them.

                Originally posted by Guest View Post
                So no, taking minocycline or doxy forever is not an option. It's very irresponsible, and might even cause a much more serious problem.
                Letting your meibomian glands atrophy from lack of effective treatment isn't a good option. Taking any medication long-term isn't ideal since there are always risks to taking them. Don't forget that sometimes we have to choose between two non-ideal options.

                But to say that it's flat out "very irresponsible" is simply not true. And if you are convinced you're right and I'm wrong, I urge you to spend a LOT more time studying all aspects of severe dry eye (including the causes and available treatment options).... because if you do a thorough job of studying those subjects, there is no way you'd ever say it's "very irresponsible" for anyone to use minocycline or doxycycine longterm - because the fact is that some patients require it.

                Originally posted by Guest View Post
                Uggh, I'm not mentally ill at all. I wish I were lol. I'd probably have more fun in life.
                You are naive to say that. For the record, your comment comes across as callous and insensitive to anyone who's dealt with mental illness themselves, or cared about someone who has.

                I've never known a single person struggling with mental illness who felt it added "more fun" to their life.

                Originally posted by Guest View Post
                My current doctor happens to be from Libya. And out of the handful of new doctors accepting new patients in my town, they are all from the developing world. That's modern Canada for you.
                This implies that docs from the developing world are somehow "less than". It may reassure you to know that those docs from the developing world have to pass stringent exams in order to be allowed to practice in Canada - and if they can't pass, then they don't get to practice medicine here. I've received care from many docs in Canada - some trained here, and others trained overseas - they have been perfectly capable of treating me appropriately.

                According to your profile, you're from Alberta (based on the comment threads it appears as though "sdeneve" posted as a guest)- it may reassure you to see the requirements for licensure as a doctor there: http://www.cpsa.ca/registration/appl...dent-practice/ and http://www.cpsa.ca/eligibility/

                I have also personally worked with many foreign-trained health care professionals (doctors and pharmacists, for example), and the standards they need to meet in order to practice here are strict. It's bloody hard to pass licensing exams in a foreign language - and that's what every single one of them has to do in order to get their license to practice here.

                On top of all that, these foreign-trained immigrant health care professionals need the patience to deal with patients who treat them like incompetent idiots because they speak with an accent - when the reality is that their accent is not a sign of incompetence or idiocy but a sign of being intelligent enough to speak multiple languages.

                If anything, I suspect that those who can pull all that off are more intelligent than the average person, to be honest.

                Anyways, after reading this forum for almost 14 years - and participating for 10 of those years - I can tell you that it is very common for docs to NOT have the greatest handle on how to effectively treat patients with dry eye who don't respond to regular treatments. So this isn't a doctor-from-Libya problem - it's an ALL-doctor problem (aside from the rare few who specialize in dry eye and corneal pain).
                Last edited by SAAG; 17-Mar-2019, 03:15.

                Comment


                • #38
                  i took finasteride (anti androgen) twice in 2018 and 2019 for mild hair loss.
                  I also took medication for overactive bladder in 2019.

                  Potentially any of the above could have contributed to my mgd

                  Comment


                  • #39
                    Post menopausal woman with dry eye caused by loss of testosterone here. Sounds like your body got so much test hormone dumped into it that it said, I guess I don't need make this hormone anymore. Try micronized DHEA available on Amazon in a low dose. The parent hormone. See what your body does with it. Mine made testosterone and significantly improved my dry eye. When I read this string it comes across as over thinking. Get down to the basics.

                    Comment


                    • #40
                      I've seen many optometrists and ophthalmologists. Dr. Jillian Wong has all the top equipment to treat dry eyes in Edmonton... she does radio frequency (RF), intense pulse light (IPL), heat, and gland expression (and she has a camera to show you how the expression goes after). She also has hypochlorous acid and other top products. I found her after being referred to a top dry eye optometrist in Toronto... and then tried to find someone with the same RF/IPL machine as him (which she has). She's also kind and doesn't dismiss my pain. There are many optometrists in Edmonton who will try to sell you expensive things that don't work. So, I understand how important it is to find the right person.

                      Comment

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