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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 hospitalized 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 ))
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 hospitalized 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 ))
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