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  • #16
    Hi all, over the last three months I developed dry eye (0 on schirmer tests but negative antibodies for Sjogren). I'm seeing a specialist at Sydney Eye Hospital who has suggested it could be linked to my gut bacteria following antibiotics I took about a fortnight prior to symptoms starting. I'm seeing a naturopath and I am starting high dose probiotics. My GP is dubious, and the last ophthalmologist I saw told me the cause was academic and treatment would be cyclosporine. So I'm scared, I have punctal plugs in my eyes and still need eye drops at work about every hour. This is only the third day of probiotics but I thought I would reach out to you all in the hope someone might have something encouraging to say.

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    • #17
      Hi Dibbie

      So you have MGD and inflammation? If so, oil/glands status, any idea causes? Do doctors recommend you any home regimen, warm compress...etc?

      It seems a trend for doctors to use cyclosporine/Restasis (new version: Xiidra) to treat MGD as they beleive
      early intervention is effective/important since MGD is progressive.

      If one doctors among 12 doctors I visited in the past 5 years ever gave me one of above drops,
      I could have kept more glands ALIVE, unfortunately, most glands are GONE for good.

      Drop: Does it help when you use every one hour? if not, maybe it is WRONG drop? if MGD, you need oil-based.

      Please keep us informed of your probiotics plan, maybe it would help me. Thanks!
      Last edited by MGD1701; 05-Jul-2017, 04:53.

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      • #18
        Hi Dibbie. I also had zero Schirmers, and at my worst 0-1 TBUT. I had severe dry eyes resulting from MGD and blepharitis, likely due to Sjogrens complicated by excessive computer use, although have tested negative for over five years for any autoimmune antibodies or other factors.

        It took several years to find resolution, but for me what worked was 1) probing to unblock my meibomian glands which almost all were blocked, including with scar tissue, and 2) drinking fresh lemon juice in green tea 2x daily to change my oils from thick "Crisco-like" oil, to flowing so that my glands did not get blocked again. I think somehow the antioxidant, antibacterial, and anti-inflammatory properties of the lemon/tea got rid of the bad bacteria in my body/gut, and helped my immune system function correctly, including the oils in my glands and possibly my lacrimal glands. I may never really know, but that's my theory given I likely have Sjogrens or some other autoimmune disease. For you, it may be something different that works.

        So I think you are on the right track addressing your diet and seeing a naturopath regarding gut bacteria or some other problem where diet and possibly supplements can help. They also test for different vitamin deficiencies and toxins in the blood regular medical doctors often do not test for. I honestly feel many diseases can benefit from fixing things from the inside out.

        However, often help from the right dry eye specialist is also needed, like I got with the probing procedure. Like MGD1701 asked, do you know if you have MGD or aqueous deficiency? You might have an aqueous issue given your Schirmers is zero, but you could also have MGD, which is the cause of almost 90% of patients with dry eyes...has your doctor pressed on your glands to see if little, no, or thick oil comes out? Did they take your TBUT? If aqueous deficiency or MGD can be identified or ruled out, that can help determine (or eliminate) which of the many treatments still available would be appropriate for you.
        Last edited by Hokucat; 05-Jul-2017, 04:00.

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        • #19
          Hi all, sorry I didn't see these replies til now.

          Update: I've done a CDSA 3 (poo sample) and results came back confirming 0 lactobacillus good bacteria and other good bacteria lower than it should be too. I've been on high dose probiotics for three weeks and they have now added lactoferrin with SB bacteria and I'm taking an antiparasitic to try and kill off dientamoeba fragilis. I can't say I've noticed an improvement in my eyes yet but I will see Sydney Eye Hospital again next week. The naturopath says I will need to take the probiotics for at least 3 months. My problem is an aqueous deficiency I believe. My meibomian glands weren't an issue on my last few checkups but I do use a warm compress twice daily and clean the lid margins with a weak bicarbonate solution. I found a website that suggested that lactoferrin given orally was helpful in increasing tear production in Sjogrens patients, and I also found something that said lactoferrin is produced in the body as a by product of gut bacteria doing their thing. The naturopath is confident she can fix my gut but no one is sure what will happen with my eyes. And of course there are still a number of specialists insisting it is Sjogrens. I'm going to ask Sydney Eye Hospital if serum eye drops would help until my gut is healed better but the wait time to produce these is 6-8 weeks. Has anyone got any thoughts on this?

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          • #20
            Hi DibbieNZ,
            thanks for sharing. Some dr say probiotics helps. I hope it will give you relief.

            Sjogrens: I just watched a viedo that the 'show' (sorry, not sure the spelling) test for Sjogren in USA. Seems it is pretty accurate.The panel also discussed treatments (serum drops is one of them). Here is the link/detail, if you miss my earlier posting.

            Panel Discussion - May. 2016 ophthalmology management
            Moderator: Kendall Donaldson, MD, MS

            Panelists: Marguerite McDonald, MD; Cynthia Matossian, MD; Alice Epitropoulos, MD

            http://www.ophthalmologymanagement.c...sease-in-women

            MGD: if your dr press/check your glands (with finger, q-tip etc) and see clear oil secrets, then you dont have MGD. The problem is many/most doctors still do NOT do it - that is why many of us suffer!!

            Please keep us updated.

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