I don't know what to do

[magicmadcap]

I have eye mucus, itch, burning, ghosting and lots of other symptoms along with pain and discomfort. I've seen 1 optometrist, 3 ophthalmologists and a cornea specialist and they all tell me my eyes are fine and they can see nothing wrong. I'm miserable and I don't know what to do. Does anyone have any advice? I've been so depressed for the past year. I'm only 24! I've been given artificial tears, allergy drops and restasis and nothing gives me any relief. Could a mild steroid clear it up? I'm at the end of my rope. Any advice would be wonderful. Thanks.

[Rebecca Petris]

I am so sorry for what you're going through.

To address this issue of doctors saying you look fine while you know you're not fine, I always recommend that people complete the OSDI questionnaire and take it to the appointment, discuss it with their doctor and request that it be made part of their medical record. Symptom data is very important with ocular surface disease and the real specialists know full well that they do not always correlate well with what they can see through their fancy gizmos.

If even with that you do not feel your doctor is taking your symptoms seriously, then it's time to move on again. I know it's frustrating, but with dry eye persistence is vital and DOES pay off, especially in this area of getting a doc who will really help. If you need a new doctor choose them carefully and if possible get a recommendation from someone here.

[andreapandrea3]

I'm 24 too--and feel your pain! I, personally, had no luck with steroids...in fact, I think the first time I was prescribed actually did more damage than good. But if there's one thing this wonderful site has taught me, it's that everyone's story is different and not everyone has the same results.

Keep searching for a doctor who has a good dose of empathy and a good dose of common sense. I went through 9 of them before I found one who was willing to help.

And can you pinpoint what started your dry eye problems? That may help you pursue this from different angles...

[magicmadcap]

I never had any eye problems until I stupidly overused visine redness relief for about 2-3 weeks straight because at the time I thought that by making my eyes whiter I was helping them. I know now how wrong I was. Ever since the visine incident my eyes have not been quite right. I really don't understand it. I feel like I've ruined my life and caused so much unnecessary misery for me and my family.

Every doctor I talk to says that visine cannot cause permanent damage. How could 2 weeks of visine cause a lifetime of restasis?? I often think that I could have something besides dry eye but who knows. If I do, then the doctors are unable to diagnose it. It's not really the itch and pain that bothers me. I just wanna be able to SEE like I used to.

I've heard that if the ghosting is from dry eye then artificial tears or something would clear it up. Has anyone ever heard of dry eye causing ghosting that cannot be fixed by putting drops in? The doctors tell me that my corneas are fine, so chances are it has something to do with my tear film.

It seems like there is a film or coating on my eyes that is causing all of this. Like a slime or something. I can see specs or some kind of debris (maybe mucus) moving up my cornea with every blink. I can also see like waves going up the cornea when I blink.

I've been so down and feel like giving up but I know I just have to stay positive and keep trying to get to the bottom of this. I've been told to just live with it but there is really something wrong and I'm not gonna stop til I get an answer. Thanks so much for the support guys. ;}

[ringo]

hello everyone, thank you for this great forum! just like many of you, i have been suffering from dry eye for years now, and my life has become much harder coping with it than i have ever imagined. Besides the painful dryness i have filaments which are truly debilitating.I want to share my story because some of the medications I use now are doing miracles for my condition, and i am starting to see my eyes beautiful again, after so many years I had forgotten how they really looked like when they were healthy.
I was diagnosed with Sjogren's syndrome after a biopsy was done to my salivary glands, and doctors discovered lymphocytic infiltration (that is the evidence for this autoimmune disease, which affects the tear and salivary glands). I had severe corneal erosions, and even got hopsitalized last summer, becoz of the unbearable pain. I had tried Restasis on its own, but it barely kept the condition from only getting worse; the moment I stopped the restasis, it deteriorated fast. Then, after being completely desperate, thank God, i met a doctor, who prescribed for me Doxycycline by mouth (100 mg a day), FML drops (4 times a day for 2 weeks, then 3 times a day for 3 weeks, and from then on 2 times a day for as long as it takes, now it is 3rd month i am using it), Diclofenac/Voltaren drops 4 times a day for as long as improvement is seen, Restasis 8 times a day, artificial tears with hyaluronic acid, Acetylcysteine drops 5 % 4 times a day for the filaments,PILOCARPINE tablets to produce tears 5mg 4 times a day, Acetylcysteine tablets 2400 mg a day (it is available in GNC under the name NAC and in pharmacies under the name ACC as powder sachets), vit C 2000 mg a day,cream with b-sitosterol around the eyes (thats a natural plant-derived potent steroid). That was quite difficult to keep up with in the beginning, but I stuck to it, as the doctor told me it is only up to my perseverance to achieve results, and he said they wont come fast, but slowly and very gradually, so i need to be patient. That was better than what all the previous doctors said-- they claimed my condition is incurable and will get worse with the years. This doctor told me there is hope; he said that acetylcysteine is undergoing trials for treating multiple sclerosis (may eb the most severe autoimmune disorder) and AIDS. He said that he expects positive results at the high dosages he has given me. In addition acetylcysteine is a powerful free radical scavenger and detoxicates even mercury from the body, besides dissolving the mucus in the eyes, it somehow "normalizes" the function of lymphocytes(responsible for the eye inflammation).Dry eye is a very tough condition to treat, and the key is to stick with a combination of powerful medications that complement each other for a considerable amount of time. Usually doctors would prescribe one or two things only at a time, and for a short time " to see if it works", and of course they wont see any positive results this way.Its no wonder Restasis itself should be taken for at least 6 months.
Now comes the miraculous part: I have been sticking to his prescription religiously now 4th month,noticing as he promised remarkable improvement in the way my eyes feel and LOOK. Also about 20 days ago I went to the American hospital in Bangkok, THailand which is a state of the art medical institution, with the most amazing facilities I have ever seen.It has the reputation of being one of the best hospitals in the world. There I was told that the erosions have completely disappeared, my tear flow has considerably increased (7-10 mm in both eyes), inflammation has imporved drastically, and filaments decreased. They conducted salivary gland biospy to confirm my diagnosis of Sjogren's syndrome. To everyone's surprise, they discovered NO lymphocytes in the glands, neither any other inflammatory cells!!! I have the results with photos from both before and after my treatment....i showed my previous results to the doctors there and they just thought it is a miracle....or the old results were someone's else's by mistake, which i know they weren't!Of course, i check my intraocular pressure often because of the FML drops, and if you decide to apply my treatment you should do the same. Some people respond badly to steroids (their pressure rises). I am extremely happy and hopeful now! I am also hopeful that what i shared here can help at least some of you get better!
Thank you all for sharing your stories here. Please let me know if the information i shared has been useful to you.
Regards,
Dani (username Ringo- thats the name of my cat ))

[magoo]

hi ringo, you went to a lot of work to post all that information but without any paragraph breaks it is extremely difficult to read. many (most) of us have vision problems and breaking up posts with lots of paragraphs really helps.

otherwise, for many, all that info won't be read

[ringo]

hello everyone, thank you for this great forum! just like many of you, i have been suffering from dry eye for years now, and my life has become much harder coping with it than i have ever imagined.

Besides the painful dryness i have filaments which are truly debilitating.I want to share my story because some of the medications I use now are doing miracles for my condition, and i am starting to see my eyes beautiful again, after so many years I had forgotten how they really looked like when they were healthy.

I was diagnosed with Sjogren's syndrome after a biopsy was done to my salivary glands, and doctors discovered lymphocytic infiltration (that is the evidence for this autoimmune disease, which affects the tear and salivary glands). I had severe corneal erosions, and even got hopsitalized last summer, becoz of the unbearable pain.

I had tried Restasis on its own, but it barely kept the condition from only getting worse; the moment I stopped the restasis, it deteriorated fast.

Then, after being completely desperate, thank God, i met a doctor, who prescribed for me:
1. Doxycycline by mouth (100 mg a day),
2.FML drops (4 times a day for 2 weeks, then 3 times a day for 3 weeks, and from then on 2 times a day for as long as it takes, now it is 3rd month i am using it),
3.Diclofenac/Voltaren drops 4 times a day for as long as improvement is seen,
4. Restasis 8 times a day,
5.artificial tears with hyaluronic acid,
6.Acetylcysteine drops 5 % 4 times a day for the filaments,
6.PILOCARPINE tablets to produce tears 5mg 4 times a day,
7.Acetylcysteine tablets 2400 mg a day (it is available in GNC under the name NAC and in pharmacies under the name ACC as powder sachets),
8.vit C 2000 mg a day,
9.cream with b-sitosterol around the eyes (thats a natural plant-derived potent steroid).

That was quite difficult to keep up with in the beginning, but I stuck to it, as the doctor told me it is only up to my perseverance to achieve results, and he said they wont come fast, but slowly and very gradually, so i need to be patient.

That was better than what all the previous doctors said-- they claimed my condition is incurable and will get worse with the years. This doctor told me there is hope; he said that acetylcysteine is undergoing trials for treating multiple sclerosis (may eb the most severe autoimmune disorder) and AIDS. He said that he expects positive results at the high dosages he has given me.

In addition acetylcysteine is a powerful free radical scavenger and detoxicates even mercury from the body, besides dissolving the mucus in the eyes, it somehow "normalizes" the function of lymphocytes(responsible for the eye inflammation).

Now comes the miraculous part: I have been sticking to his prescription religiously now 4th month,noticing as he promised remarkable improvement in the way my eyes feel and LOOK.

Also about 20 days ago I went to the American hospital in Bangkok, THailand which is a state of the art medical institution, with the most amazing facilities I have ever seen.It has the reputation of being one of the best hospitals in the world.

There I was told that the erosions have completely disappeared, my tear flow has considerably increased (7-10 mm in both eyes), inflammation has imporved drastically, and filaments decreased.

They conducted salivary gland biospy to confirm my diagnosis of Sjogren's syndrome. To everyone's surprise, they discovered NO lymphocytes in the glands, neither any other inflammatory cells!!! I have the results with photos from both before and after my treatment....i showed my previous results to the doctors there and they just thought it is a miracle....or the old results were someone's else's by mistake, which i know they weren't!

Of course, i check my intraocular pressure often because of the FML drops, and if you decide to apply my treatment you should do the same. Some people respond badly to steroids (their pressure rises). I am extremely happy and hopeful now! I am also hopeful that what i shared here can help at least some of you get better!

Thank you all for sharing your stories here. Please let me know if the information i shared has been useful to you.
Regards,
Dani (username Ringo- thats the name of my cat ))

[msienkiewicz]

Ringo,

Thanks for reposting. That is an incredible regime. I can't image using restasis 8 times a day. Have you tapered off on any of this....

So happy for your positive results.

Melissa

[ringo]

Yes, as a matter of fact i have tapered the steroid FML to twice daily, and the doxy to 50 mg a day....

but the restasis not yet; i was using it twice daily initially with absolutely no improvement, then 4 times daily, and then the doctor decided to see what will happen if i use it twice that much.

it is with my full consent that he gave me all these medications and after the adverse effects were explained to me; i agreed to experiment if i have to.

the doctor said that when it comes to inflammation it is better to hit it hard, instead of trying this and that medication at a time, for a short time. He claims it never works that way for long-standing inflammation like that of dry eye.

Also, i have done extensive tests exploring any other possible medical condition that i might have which has dry eye as a symptom. They even tested the levels of Vitamins in my body, for ex vitamin D! and all kinds of inflammation markers, enzymes, hormones,etc.

[ringo]

Forgot to mention I had my tear ducts plugged as well, after the inflammation was controlled to some extent. That also helped a lot! not least becoz it helps the medications stay longer on the eye surface...

I also can't stress enough the relief that systemic (oral) acetylcysteine provides to the discomfort and pain the eyes...it is felt soon after you start the treatment. If you take it for about a month and onwards, you will notice a considerable improvement.

Thank you for sharing your experience and for letting me know it was worth sharing my experience....

[magoo]

ringo, thanks for the small paragraphs! Much easier to read (and re-read) your interesting and detailed posts. Lots of food for thought there.

Lynda

[ringo]

Thank you Lynda for your feedback.

I hope that whatever helped me, might help others and give them hope, because, yes, even today my eyes are not only better,i see their appearance returning to what it used to be 4 years ago, before this condition started.

This is a much bigger progress than just feeling more comfort....My eyes had completely lost their lustre, and they had become somehow swollen, red,puffy and smaller, the edges of my eyelids were irregular, etc. in addition to the constant pain. When I looked at the mirror sometimes, I wondered, who is that? Is that me?

Now when i look at the mirror, I think, thank you God, my appearance resembles who I used to be before "dry eye".

It is worth the perseverance for all these months....and I believe the key to resolving this condition is addressing the inflammation and filaments, rather than seeking to just alleviate the pain and discomfort with artificial lubrication, humidifiers, and other tools that only fight the symptoms without touching the root cause of the problem.

If we do not intercept the inflammation cascade, no matter how we alleviate the pain from the inflammation....the dryness will never really go away, and the whole thing will be just coping with the problem, rather than truly fighting it.

[odydnas]

Hi Ringo,

Thank you for your informative post, as well as congratulations for your improvement! I had a couple questions...your post seemed to imply that your treatment has "cured" you of sjogren's? Is that true?

Also, does acetylcysteine only help a person who cannot make tears due to inflammation, or can it help those w/ MGD too?

Thanks!

[ringo]

Thank you, i am hoping that through sharing my experience others may benefit in the same way I benefited from reading posts here.

I just posted a reply related to your question i think in the same thread! I think we have been writing at the same time...

Your question was the first thing that crossed my mind when I saw the results showing there is NO lymphocytic infiltration of the salivary glands any more. Samples for the second biopsy were taken from three different layers of the glands, and they showed no trace of the inflammatory clusters that were present before.

As far as my knowledge goes, there has never been published in medical literature a case when the lymphocytes "leave" the glands. The doctors were definitely puzzled and started looking for information.

What they found is that , yes, the definitive landmark of Sjogren's is precisely the presence of lymphocytes in the galnds. Their absence signifies absence of autoimmune activity related to Sjogren's.

Not surprisingly, my tests for auto-antibodies also came back negative. And the tests for inflammation markers too.

When i mentioned the high dosages of ACC that i had been taking for about half a year, the doctors in Thailand were astonished, as they had heard only cancer and AIDS patients, patients with cystic fibrosis,and patients poisoned with metals like mercury or substances like acetaminophen, were treated with such high doses. Lately they had been using it to control inflammation in the amniotic sac in pregnancy as well. That is what they told me after they researched a bit on their computer.But they had never heard of Sjogren's patients using it.

My doctor had heard of Sjogren's patients using ACC with success at much smaller doses than what I was taking. But my condition was so miserable that compared to the cyclosporin they wanted to give me intravenously, I thought it is much better to try with the harmless ACC.

[ringo]

one more thing, regarding ACC helping people with MGD- yes definitely, ACC is prescribed for that, for blepharitis actually, but it is more or less similar.