Reached the end of the line and now I've lost hope.

[savino]

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[BarbaraS]

I am so sorry to hear what are you going through. Do you only have low TBUT, have is with your tears (Schirmer test)?. I think you tried a lot of things, but that does not mean all your options are out. I think that the wright combination, duration and maintenance with treatment is crucial for the success. You tried with some treatment for 2 or 3 months, but I read people having success after 6 months or a year period... I found something about the saponification in one article that can be maybe disscused with yor doctor - about seborrheic blepharitis. Do you also maybe have some skin problems? Seborrheic blepharitis and saponification are caused by fungal overgrowth, so antibiotics will not help but honey is also antifungal and the selsun schampo is also antifungal. And with both of them you said you had some relief. Here is the article:http://www.reviewofoptometry.com/content/c/15811/ Read about Seborrheic dermatitis. I think with using so much things your eyes are really irritated and inflamed at the moment. Because of putting so much antibiotics and other stuff to my eyes and eyelids I also have very inflammed eyes and eyelids. What I was advised was to stop cleaning my eyelids harsh, but instead clean them at the morning and the evening or when needed only gentle with cottons with warm/little hot water. I was advised to use gel at night, and than Systane Ultra and Systane Balance every hour for 2 weeks (one hour Systane Balance, other hour Systane ultra, than again Systane Balance and so on) and then on the 3 week the same drops every 2 hours, and on the 4 week the same drops every 3 hours. I was also advised to do warm compresses for 10 minutes twice a day. And than just to put together my eyes strong and hold them for 10 seconds. Too much warm compression and squeezing and expressing your glands will just cause the further irritation of the eyelids, eyelids need to calm down. I also started to use manuka honey on my face and on my eyelids for 3 hours every day, because of antibacterial, antifungal and antiinflammatory properties of the honey. I hope you find something of described useful.

[savino]

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[littlemermaid]

All good from BarbaraS, same here. Also we (teenager, infected seborrhoeic dermatitis 'rosacea') found diet is a big trigger, even oil capsules flared up the MGs and she used to get red/orange eye, and the ophth could see 'burnt' patches on cornea from enzymes pumping out onto the eye surface. Her triggers are fats, sugar, flour. Although I met a mother who said her son's triggers were orange juice and tomatoes. We also had more success with 1:50 organic tea tree shampoo in warm water as a gentle eyelid margin cleaner (couldn't tolerate Cliradex either). I'm sure demodex love this. Whatever fats and sugars she eats are unfortunately written all over her face within a few hours or next day. Alcohol is an instant red-eye flush. Obviously everyone has different aetiology, and we had infected blocked glands but no saponification. Selsun was a bit harsh so we used sensitive Head & Shoulders not more than twice a week, hypersensitive Simple shampoo rest of time. We always do best on tapering regimes - eg TTO eyelid cleaner for 2 wk then taper off to weekends only, then off, then restart if things started to slide again. I would like her to try Paleo with fish or dairy and wheat-free vegetarian but she says that's not going to happen soon so we still deal with flareups after pizza etc.

We refused isotretinoin because the dermatologists were not familiar with the effect on the MGs or interested in organising monitoring for that.

I've also been reading about dyslipidemia and meibum but got nothing useful to post yet.

After years of this, quality of life and support and kindness you get are as important as professionalism in your doctors. whatever your health hardship is, and this is well worth seeking out, wherever you find it. Counsellors know that people with health issues need extra support to be OK enough to get on with their day, and it doesn't matter who says those kind words. Hope you can find people to see you through this, because it will get easier once you find a regime that works for you.

[BarbaraS]

Savino how does your eye problem started? First I thought for me all started with an eye infection, I was also wearing contact lenses for 10 years. But before all this started I also got seborrheic dermatitis, which I never had before.

[savino]

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[savino]

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[BarbaraS]

My story is really similar to yours. I have worn contact lenses also for 10 years most of the time (I was wearing glasses just when I was at home). I also did not have any issue with contact lenses, I never have a feeling of dry eye and never have tired and red eyes. i was also very cautious with my hygiene regime. I was wearing monthly soft contacts All day clear. In June 2014 i notice my eyes are slightly pink and I immediately went to my ophthalmologist. She prescribed my Azyter 2 times daily for 3 days and advice me not to wear contacts for 3 weeks. I listen to her advice, but after using Azyter my eyes did not calm down, I think they were still lightly inflamed so I went back to ophthalmologist to ask for another appointment. I was rejected by the sister that my case is not serious and that I should just wait not to wear contact for 3 weeks, using artificial tears and everything will be fine. I was so stupid not to insist to see an ophthalmologist again. In these 3 weeks I also notice my eyelids were little inflamed. But everything was in a mild way, so I though I was doing ok. After that inflammation, I could not tolerate contact lenses so well and was later advised to stop wearing them for a year. And in this year my eye will recover and I will be back in contacts. Well that never happened, instead of wearing glasses all the time, my eye just progress and went form having some dryness issues late in the evening and using artificial tears once or twice a day to having problems (itchiness, dryness, burning) all the day. I was diagnosed later with meibomian gland dysfunction, my TBUT was 5 and my Schirmer 7 and 8. They said they do not understand my symptoms and my eye troubles, because it looks like I have mild version of aqueous deficiency and meibomian gland dysfunction. Later I went to second opinion to an optometrist, specialised with dry eye, who said that my glands are not producing clear oil but are blocked.
So to sum up, after some infection the same as you, my glands stop working. And my eyes got worse and worse (I assume that at the beginning some glands were still working and the tear film was stabile, but with some time of not getting lipids into the tear film, the tear film braks and you feel all the irritation).
I will write here on this forum everything, which might help me. It is now also 18 months for me when all this startes, but I am not willing to give up yet. I was working too hard for all my life, just to loose now everything because of some stupid eye inflammation, wrong diagnose and bad medical treatment because of some doctors and sisters who do not care nothing but only earning as much money as possible, and the thing that this condition is so underestimated (current medicine don´t understand a lot about how meimboiman glands work amd they do not even care too much, because it is easier to make milliards from selling lubricating drops and gels, which just maske the symptoms, but not cure the problem and you need to pay for them alone, insurance is off here. The good news is, they are developing some new drugs and putting more effort to research the dry eye and mgd nowadays. But not because they would care for our pain and bad quality of life, but because the number of people having troubles with dry eye is increasing, which means more people will need this new drugs and they will be able to make more money from it.). Sorry I am not in a good mood. Please, inform us how are you doing and if you find something that helped you. We need to fight.

[savino]

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[BarbaraS]

OK at the moment you need to make an appointment with ophthalmologist again. If your eyelids hurt so much, you will need some stronger stuff to calm the inflammation down. I think try to cooperate with your ophthalmologist with the knowledge you have gained. Try to find one who will care, will be willing to try different treatments and will be willing to see you continuously in regular visits, too see how the current treatment is working for you. I think you need to get prescribed some antibiotics and antiinflammatories to stable your eyelids and saponification as much as possible. How long were you on Azyter? Here is one study that Azyter can be more efficient in long term use: http://www.scielo.br/scielo.php?pid=...pt=sci_arttext If the ophthalmologist will describe you steroids, make sure you will be controlled closely by your doc, because of the side effects like developing too high eye pressure. Maybe ask for some topical antiinflammtories, like some topical steroids. After you will stabilise your eyelids, you should find with ophthalmologist your routine to make it stay this way. Just do not allow to be pushed away again with some strong steroids. Explain to your ophthalmologist that this is a chronic condition and that you need to be check up regularly and try to make them think out of the box how they can help you. Giving strong steroids is the easiest way, you will be better, but once going off of it, all troubles will return. Maybe discuss something of trying some systemic antibiotics. There is one study about systemic azytromicyn: http://www.ncbi.nlm.nih.gov/pubmed/25138765 However be careful, strong systemic antibiotics can have a lot of possible side effects. Yes it is interesting that i have similar story and also SD. However my eyelids do not hurt, they are just slightly pinkish. One ophthalmologist said to me my gland produce normal oil and dysfunction is mild, the optometrist on the other hand said to me after expressing my glands that the secretions were thick. Optometrist said, that the eyelids should be soft, so i have my glands expressed at her office for two times now. Now I am trying to make the oil liquid with doing warm compress twice daily. However I think office gland expression is not for you, since you have problem with too much oil and with saponification.

[savino]

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[geminijo]

Hang in there Savino, I know easier said than done x

[littlemermaid]

Savino, see if there's anything in the TFOS MGD Report, IOVS journal March 2011 vo 52 that helps find out what's happened http://iovs.arvojournals.org/Issues....issueid=932970. Eg 'Some of the differences seen in lipid types associated with different forms of blepharitis may be due to the presence of certain types of commensal lid bacteria that can hydrolyze lipids. People with meibomian seborrhea with a clinical appearance of Staphylococcus infection appear to harbor significantly more coagulase-negative Staphylococcus (CNS) strains capable of hydrolyzing cholesteryl oleate than do normal individuals.' Also, contact lenses change the eye surface and limbal cells anyway after a while (search PubMed) so that may be why healing is delayed after such a long-lasting infection. Could be the tear prompt is still reduced through deenervated eye surface, which will heal. Sorry to be armchair Googler, it's just guesswork. Well said, Geminijo, hang in there.

[savino]

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[Bill Sonoma County]

Hey my friend, it is tough. I've had DED fro 40 years. There will be flares and remissions. Best advice: read a few prior "Doctors don't understand posts", one recent one started on Set 10, 2015. Scroll through the comments and when you get to my reply on Sept 11, open up the document on OneDrive. Sorry that this is not easier to access, but I've tried incorporating links at various times and this just happened to be one time that worked. Score your symptoms on this index and take it to a psychiatrist, your primary care MD, and a pain clinic. With persistence you might also find a good ophthalmologist. The DED problem is multi-disciplinary and the solution will be multi-disciplinary. The Subjective scoring index was developed by a physician and will help get your care providers to take this condition with the seriousness that it deserves. You are not alone, people have been through this before and there is hope.