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  • Keeping hope alive today, or trying hard

    Hello to all!

    This is my first post and I am feeling sick to my stomach writing it as I know what I am about to share has been so difficult for me and involved so much suffering. It has been helpful knowing that I am not alone. I am still looking for my answers, but I will share what I have tried in case someone is able to offer some advice, or just connect, or is helped by what I share. I am 31, female and was healthy prior to this issue starting about 8 months ago.

    Doctors/"Care" I have received:
    3 general practitioners - elevated ANA, negative for autoimmune diseases
    two ophthalmologists
    two optometrists
    two dry eye specialists
    an acupuncturist - 6 sessions, some relief temporary
    an allergist - no findings
    functional medicine MD - current, see below

    I was told my condition is mild dry eye, bilateral with ocular pain and now diagnosed corneal neuropathy. My MGD is not "the issue" and they even removed it from my chart. I do not have bleph or demodex, no staining, mmp-9 negative.

    Things that I have tried and currently still doing:
    Xiidra 2x day
    Autologous serum 6x day
    artificial tears 3-10x daily
    lotemax once per week if pain is bad
    saline preserv. free for burning
    Refresh PM ointment
    omega 3 1300mg
    CBD capsules
    vitamin D
    vitamin B complex
    Vitamin C
    screen protector for blue light
    humidifier
    glasses and no contacts
    exercise
    warm compress
    cold compress
    CRYING

    Things that I tried and stopped:
    Borage oil
    Maqi berri
    Optimel Manuka
    coconut oil
    lid wipes
    lid scrub (once in a while)
    elimination diet (admittedly, I was hungry and I failed after 6 days so didn't really figure anything out)
    eliminating alcohol (admittedly haven't eliminated it as I am not coping very well currently)

    I could use some words of support, hope, triumph stories. I work in an office, in public health and I am struggling there to keep up with work and my attitude semi-positive. I can't wear eye makeup and even walking to work the wind brings a lot of pain. I tried two therapists and didn't care for them and didn't want to waste my energy. My relationships are impacted, I am impacted. I have had worse moments, but am really down right now and the future is daunting. I had HIGH HOPES for the serum and it seemed to be helping, but has reverted back. I have only been on it 3 weeks.

    Currently I am also trying low dose naltrexone. Anyone else? I just started. Also progesterone. Those two daily. I have hope those will help balance my immune system and inflammation for some relief. I am also going to travel home to see a cultural healer, traditional indigenous medicine (could help my spirit in the least).

    Thank you all for your stories and I send love and light to you. X

    Mel







  • #2
    Oh, I forgot lower silicone plugs currently and have tried allergy drops that did nothing.

    Comment


    • #3
      Welcome, Mel.
      So your issues are: mild dry eye, bilateral with ocular pain and corneal neuropathy? Any ideas sources/causes??

      Things that you tried and stopped: why stopped? because of improvements?

      Comment


      • #4
        Thank you.

        Yes, those are my issues according to the dry eye specialist, and the positive ANA.

        Ideas for causes are many. I wore contact lenses for 15 years, took mostly good care of them and did not sleep in them, but extended wear on monthlies when I was low on money. I didn't wear my glasses often, because I can see better with contacts. I also was on birth control for many years. I had e.coli last year and I thought it resolved on its own, but it could have possibly disrupted my immune system, not sure. I also lived in an apartment last year that had mold and dust. I live with two cats and have never been allergic, but now have carpet. It could also be an illness I am still unaware of with symptoms presenting only as eyes and headaches, fatigue.

        Comment


        • #5
          Do you spend much time on computers/personal devices? Did this come on slowly or quickly? How would you rate your overall diet...lots of processed food or are you a good cook? Do you sleep well, drink lots of fluids?

          Comment


          • #6
            As you've seen lots of different doctors I'm assuming they already did this, but has anyone inverted / flipped up your eyelids to check for giant papillary conjunctivitis due to the contact lens wear? Have they also tried to express the meibomian glands and are they functioning fine?

            From your list, I think I didn't see scleral contact lenses (sorry if I missed it), and as you say your vision is better with contacts it could be worth looking into those. They're made of a different rigid material and have a gap over the cornea to fill with saline and artificial tears. Some get on better with buffered rather than unbuffered saline and a few drops of Celluvisc or other artifiiasl tear. Preferably with Hydra-PEG coating on the lens too to increase comfort. I'm not sure where you're based but in America there are lots of options such as PROSE, LaserFit, Eye Print Pro etc. PROSE can be covered medically for many. The owner of this site wears Eye Print Pro with Hydra-PEG and runs a Facebook group with tips / advice:
            https://www.facebook.com/groups/1499817493657314/

            For neuropathic pain it looks like you've already tried lots of things like serum. If you can get it covered medically, as it can be expensive, perhaps Prokera amniotic membrane bandage contact lens is worth a shot (worn for 1 or 2 weeks) as like serum that has nerve growth factors. Regenesol I hear could be released February 2018 by the same makers of Prokera though, it'll be amniotic membrane / umbilical cord tissue eye drops so easier to apply. There's also some who find relief with nerve signal blocking medication like gabapentin, amitriptyline etc. Here's an article which mentions those:

            http://ophthalmologytimes.modernmedi...peutic-dilemma

            Hope you find relief soon.
            Sufferer due to Toxic Epidermal Necrolysis.
            Avatar art by corsariomarcio

            Comment


            • #7
              Hi PrettyEyesMel,

              I really hope you find some relief soon. Maybe I can't help you but be sure you are not alone, don't give up. I am feeling very down myself, but WE are not alone! Everyone in here is soooooo nice and they always try to help you, I feel like I have a great group of friends who understand what I'm going through.

              Don't give up,

              Comment


              • #8
                Hi PrettyEyesMel
                Diet plays an important role. Keep inflammation under control is super important.

                The combination of GLA + omeag 3 works more effective than omega 3 alone - many reports support this.
                It works for me too - just in about 1.5 months. First I added omeag 3, then GLA and such combination really works better.

                Good to identify causes so you can deal them more effectively.
                Last edited by MGD1701; 21-Nov-2017, 13:28.

                Comment


                • #9
                  Thank you all so much. I have daily headaches and having to drive gives me so much anxiety, I am really struggling. I tried GLA for a month and didn't think it helped. I think the serum is helping, but today was another rough day. I asked about scleral lenses and they told me it may not be worth it right now as my vision changes. I don't know if I will spend the money and then not have great vision? I am just wearing glasses right now. On my most recent chart report it says asymmetry. I am not sure what that means.

                  Tomorrow I am going to start another attempt at the elimination diet. I don't eat a lot of processed foods, but I drink alcohol regularly because of stress and hard time coping with this. I know I need to cut that out. Your words do help!

                  -Mel

                  Comment


                  • #10
                    Hello Pretty Eyes Mel
                    I too am fairly new to these forums, but the help I have received here is a jackpot of information and support. I was in such despair.... lets just say I found these guys and hope was renewed. Don't give up. Read read read and educate yourself. The information available here is up to date and soooo helpful.
                    Also speaking of doctors , there is also a different specialty in the Optometry side of eye doctors that seems to consist mostly of the true scientists and healers. Vision Development Optometrists. I just recently found out about this specialty.
                    My past experience with eye doctors is horrible , the optometrists seems lazy laid back, just give you a prescription and send you on your way. The Ophthalmologists seem to just want to do expensive surgeries and Lasik. They dont seem very interested in finding the true root of their patient's disorder to treat successfully, takes too much time and the money return is minimal compared to surgery. Seems like the doctors trained at COVD (college of optometrist in vision development) answer to the true calling of a healer. I don't know if they could help you. But I do know that they will bend over backwards to try. And they are full of information. Sorta like OD vs MD . Specially when it comes to interacting with patients as in bedside manners.That has been my limited experience. Just thought I'd share and give you a little hope. Don't give up. And be patient with the Autologous Serum drops. Keep using them regularly.

                    And lastly WE ARE HERE. And we care. This is a community. It's made a huge impact in my life and I sincerely hope it does in yours too.

                    Comment


                    • #11
                      Hi Mel
                      GLA: allow me to remind, the points are: combined with Omega 3, food/salad. one month is a bit short.

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                      • #12
                        Dianart1

                        ​​​​​​​Thank you so much for your post. I will look into this specialty you shared about, I didn't know about it previously. I am not giving up yet!

                        Hm, would the doctor be an O.D, FCOV? when I am searching my area I am having a hard time distinguishing a specialist. I am in Minnesota.
                        Last edited by PrettyEyesMel; 28-Nov-2017, 00:56.

                        Comment


                        • #13
                          MGD1701 What do you recommend for GLA? I was taking Borage Oil with GLA in combination with theratears. I think I gave up in part, because I was frustrated with how many things I was taking. Also, something was causing my stomach pains/issues. I think it may be CBD actually, but not sure. It's a lot to manage.

                          Comment


                          • #14
                            Hi Mel,
                            GLA:
                            black currant jam, (cold pressed) Hempoil
                            mix with (bio cold pressed) Flaxseed oil, salad (different colors of vege) (or + avoado (oil), nuts).

                            Theare are many (cases) articles/reports suppport such combination work more effective and it works for me too -
                            mainly thin the oil but it also helps with tear production and inflammation, what I have read.

                            Many doctors in USA recommend
                            *HydroEye (ScienceBased Health) contains omega-3s and omega-6, GLA
                            *PRN
                            Last edited by MGD1701; 28-Nov-2017, 08:15.

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