dry eyes for four years now, finally i have achieved progress with a few medications

[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).
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 ))

[Bekkestad]

Amazing story! Gives hope to a all suffers out there.

[ringo]

thank you for your reply

Hello,

Thank you for your reply, i want to spread the word about my treatment somehow, so others can benefit! I realised that most doctors, especially in Europe, have never heard of more than half of the medications I am using, or have never prescribed it for treating dry eye. Dry eye is a very tough condition to treat as it involves a vicious circle in which the functions of immune, neural and lacrimal functions in the eyes are compromised in an interdependent fashion.It is subject to improvement, but results come with time. Most doctors try a medication at a time, for a short time, adn usually there are no results. In the case of dry eye, treatment requires a powerful combination of medications (like for ex. steroidal and non steroidal antiinflammatory drops complementing each other's action enhanced by the synergistic action of Restasis).
By the way, with regards to the Pilocarpine pills i am taking, i forgot to explain that they are a kind of substitute for the neural messenger acetylcholine in the eye glands an other exocrine glands.I saw previously a thread on stress causing dry eye-- and yes, it is very much the case with prolonged chronic exposure to stress (the neural messenger in the lacrimal gland is called acetylcholine, and it has to bind to certain receptors in the lacrimal gland in order to cause lacrimation; if its function is disrupted, dryness sets in, followed by inflammation, which in turn produces certain substances precluding acetylcholine from binding to the receptors, etc., it becomes a vicious circle).

[Lucy]

Ringo, I haven't read your posts yet. PLEASE BREAK FOR PARAGRAPHS EVERY FEW SENTENCES. We have bad eyes and it's almost impossible to read something like your posts on a computer. Thank you. Lucy

[ringo]

here is my post again with paragraph breaks, thanks Lucy

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 ))

[bernmee]

Now I like it!

B.

[ringo]

thanks

I am sorry for the way my posts looked previously, and for the repetition, but this is my first time ever posting anything in a forum... thanks for your feedback

[Aaron77]

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).

WOW! the list of side effects and potential side effects must be huge, hopefully its not too long before you can cut back on the doses.

[Lucy]

Ringo (love that), this post looks much better and I could read through it. Thanks and I'm sure it was easier for most people to read all the way through too. Now, you need cats and name them: John, Paul and George. That's a lot of cats though. Lucy

[ringo]

WOW! the list of side effects and potential side effects must be huge, hopefully its not too long before you can cut back on the doses.

Aaron77,

Thank you for expressing this concern which i had when i started this treatment. I agree with you that there are possible side effects, and only from the FML and NSAID drops if we are talking about any real risk of side effects.

I am monitored constantly by my doctor, and he says that up to now, thank God, thare are no adverse effects on my eye pressure or cornea.

Before I started this regimen the damage to my cornea was severe, I had to have my eyes patched constantly with ointments. I couldn't stand opening my right eye. The pain was unbearable, and I had to leave my work...I was even hospitalized. I had episcleritis in addition to the corneal erosions.

Now my eyes have healed, and my intraocular pressure is lower than what it was before the steroids, because the strong inflammation was causing it to rise.

I do look forward to tapering on the medications, mostly because it is hard to keep up with the regimen.

[ringo]

Ringo (love that), this post looks much better and I could read through it. Thanks and I'm sure it was easier for most people to read all the way through too. Now, you need cats and name them: John, Paul and George. That's a lot of cats though. Lucy

Hi Lucy,

Thank you for your feedback.

Ringo was the name my cat came with from the rescue center. I love my cat and he has helped me through my darkest most depressing times caused by this condition, including losing my job, personal problems in my family, almost going througha divorce, etc. I used to think he was the only one who really understood my pain and felt for it.

I am puzzled by your comment that I need more cats and your suggestion to name them. What do you mean?

[calli66]

Thanks for posting, Ringo---lots of information and lots to think about! I had heard of Acetylcysteine but I don't know much about it. I have Sjogren's and I often think about all the free radical damage done to my body. It would be great to have a doctor such as yours who really takes treatment seriously.

My eyes are doing OK, but I have other problems due to the Sjogren's. I think the Acetylcysteine and Vit C would help. I've already increased my C, but not that much (2000 mg).

Calli

[ringo]

Hi Calli,

Thank you for replying.... I am really sorry to hear that you suffer from Sjogren's too. I hope what I posted will help you too, coz it helped me.

I had accepted Sjogren's like terminal diagnosis; moreover it affected my eyes worst and constantly reminded me of its presence in my body. I was so gloomy, especially with doctors giving up on my treatment when they realise I have Sjogren's. Oh, we can only provide moderate palliative measures...you know that is for life...and so on, and so on...

My doctor told me that there are old superdrugs, whose uses far exceed their label use. Like Acetylcysteine, for example. It actually reverses autoimmunity, by normalizing the function of immune cells and neutralizing many inflammatory cytokines. It also is the most potent free radical scavenger naturally present in our bodies. It is the precursor to gluthathione, vital substance in all the processes taking place in cells.

Gluthathione is found to be in very low levels in patients with Sjogren's. Anyway, the mechanism of how Acetylcysteine works is complicated to explain here, but it does work! and that is scientifically andclinically proven, its not anecdotal.

The thing is that people with compromised immunity (autoimmunity, AIDS, cancer) benefit most when they take it in higher than the prophylactic doses beneficial to the general population. I am taking 2400 mg. Please try with the same dosage.

That is the dosage generally prescribed to AIDS patients. In their cases, ACC is able to maintain a healthy functional population of T-lymphocytes years after untreated with ACC AIDS patients have passed away. ACC has been extensively used to control inflammation with cystic fibrosis of the lungs and other autoimmune conditions affecting the lungs.

If you have problems with your eyes, try Evoxac or Salagen. They also do wonders for eyes...and dry mouth.

In people with Sjogren's ACC is known to have increased ocular comfort and overall wellbeing dramatically (at doses 400 mg a day which is 6 times less than what I am taking).There are plans for clinical trials with higher dosages like mine.

For some reason, however,outside the medical publications and encyclopedia entries on ACC, few doctors are aware of the potent effects of ACC. It is also advertised as used only for breaking down mucus in the lungs. I find that rather odd.

Another drug with potent antiinflammatory action is doxycycline. It doesn't only help blepharitis.

And I cannot stress enough the wonders that plant-derived steroids do for Sjogren's patients. These steroids have a very good safety profile unlike synthetic steroids. They are known as phytosterols and sterolins. You need tpo take high dosage for noticeable effects for some time.

Plus of course, taking oxidants like vit. C and E and A...minerals like Zinc,i can actually check what I have been taking exactly and post it for you.

I did not believe that taking all this will help me., because doctors told me that my condition is INCURABLE, and even the newest breakthroughs for rheumatoid arthritis like Actemra, anti-CD22 and what not, had no effect on improving Sjogren's patients.I had lost hope. And I was getting worse.

But I persevered with ,my regimen. I thought, well, I have to be on medication for life anyway. Let's do the maximum of what I am capable of, and the rest is left to God.

I pray and read a lot too. That helped me cope psychologically. I also travelled a bit, to places I have always wanted to go. Like the Tiger Temple in Thailand for example. That was healing experience for me.

And here I am, wondering how the lymphocytes disappeared from my glands. When the doctors said, they will not only never disappear, but proliferate. And even warned me of possible lymphoma.

I personally think it is the ACC that contributed most to my improvement. The most instantaneous effect is seen when you drink a glass of hot water with 600 mg sachet of ACC dissolved in it. I could actually feel my eyes relieved and my energy surging.

ACC is always taken with Vit. C. There is a very specific reason for that... I can quote it for you if you need me to.

Anyway, hope that helps. Please try ACC. Even healthy people benefit hugely rom it. It is one of the drugs in life-extension formulas...

You can also try suplementing with Q10 and L-carnitine. They are potent anti-oxidants and immune system boosters too.

[Lucy]

I am puzzled by your comment that I need more cats and your suggestion to name them. What do you mean?

Surely you jest? I was referring to the band mates of the great rock group from England, the Beatles. Ringo was the drummer the the others I've named had other places in the band. Perhaps you're too young? Lucy

[ringo]

Hi Lucy,

Thank you for the clarification.

You put a big smile on my face....

I am 27 years old, and surely I have heard of the Beatles, but that one of them was called Ringo-- that's news to me!

You have a great sense of humour though.... I really loved the idea-- i should get 3 more cats and start a cat band

by the way...could you briefly tell me about your problem with dry eye and your progress on it? that is only if it does not put too much strain on your eyes, i understand perfectly if you are unable to at the moment.

i know i must have missed many of your posts, you have been a member here for some time...