7 years and no progress - This is what I've tried - Please Help

[JJdryeye]

I developed chronic dry eye back around 2007 and I've been to five ophthalmologists and tried several things, none of which has helped. I am 39 and frustated over this to point of getting depressed about it quite a bit. I haven't seen a doctor about it in a couple of years, but I'm ready to get serious about it again and find a new specialist. I just want to post all the things I've tried and see if anyone out there can offer some ideas of what I could try next. I know that each case is individual, but I just don't know what direction to go next.

Here's what I've tried, none of which has helped:

-OTC eye drops. None seem to help much, Alcon 'Naturale Free' are the best of the worst for me.
-Genteal gel. I have horrible reactions to petroleum based ointments.
-Restasis 2x a day, for two years.
-Pataday 1x a day.
-Warm compresses using a sock with rice (helps very slightly I guess).
-A dissolvable punctual plug in one eye. Actually made my eye worse.
-Autologous Serum drops
-moisture chamber goggles at night
-Fish oil / Biotears
-Doxycyclene 50mg 5 days a week
-Immunotherapy for three years to treat systemic allergies. Didn't help, perhaps I needed more time.

The only thing that ever made a significant difference were the steroid drops a couple of docs gave me temporarily to get things under control. But since this is not safe long term, it was just a tease.

Tests I've had:

Schirmer's test (7 and 9 out of 15)
Bloodwork test for Sjogren's syndrome: negative

Things suggested as possible remedies by docs, but I haven't tried yet:

-Xibrom
-Flaxseed oil or OmegaCure. (Very concerned about prostate cancer risk associated with this).
-Azasite
-Bepreve


My next step is to try to find a specialist. I feel as though I should find one who will help me search for a cause, rather than just treating symptoms, but I'm not sure how realistic I'm being trying to find a doctor who will actually do this. Any help you all can give me would mean a lot.

[Dog2012]

Why not serum eye drops ?..it helped me first day .

[JJdryeye]

I tried the serum eye drops at Bascom Palmer in Miami. They didn't help at all unfortunately.

[NotADryEye]

JJdryeye,
If you can get to Tampa, I'd try Dr. ******. I've posted a few times on this site about how much he has helped me. And keep in mind that with Dry Eye there are frequently numerous co-morbidities, diseases that occur at the same time. You can not just treat one disease and expect to be symptom free. Plus some of the issues, autoimmune for example, can take a very long time to resolve.

Like you I was a patient at Bascom Palmer and used serum tears for a few months. The tears, and the doctors there, did not help at all. In fact, at this point, I am unable to tolerate most everything.

My daily routine looks something like this. Yours, depending on what is going on, may need to be different. I am unable to tolerate most everything so you'll see there are very few drops/chemicals in the eyes.

Warm compress 3x, for two minutes.
Irrigate 1x with saline, 2 squirts
Cliradex, 1x
Doxycyclene, 20mg 1x, to help with inflamation
Omega 3, 2800 mg, 1x
Sleep with moisture chamber goggles.

My biggest issues are demodex/bacteria on the lashes and autoimmune Hashimoto's thyroiditis which causes inflamation in the meibomian glands. The symptom is soapiness in the eyes. It can be extremely uncomfortable and makes reading/writing/driving virtually impossible.

Your treatment/routine may need to be different. It's hard to say exactly what you might need and what will be effective without an accurate diagnosis. Almost freakishly, Dr. ****** has never been wrong. Even when I write to him via e-mail with a very specific issue, his advice for treatment is always spot on.

I've had posterior and anterior conjunctiovoplasty in both eyes for chalasis and have had meibomian gland probing a few times, all since September 2011, by Dr ******. Also my lower ducts were cauterized by another doctor and upper are partially opened. But I am much better, all thanks to Dr. ******, although we are still treating the demodex/bacteria and waiting for the autoimmune problems to resolve. I try to take it one day at a time and stay positive. Staying positive, keeping your mind strong, is extremely important when you have dry eye.

Try Dr. ******:
www.dr******.com
813-875-0000

[JJdryeye]

NotADryEye,

Thanks for your response. I actually only live about an hour from ******. But I just can't afford him. I'm sure he's good, but it's just not possible.

One thing that has really frustrated me is the inability to get a specific diagnosis from any of the doctors I've seen. Unlike yourself and many others on this site who seem to know exactly what they are battling, I just seem to get lumped into a general dry eye category by the doctors and thus given a 'general dry therapy' to try.

What do you think has helped you the most of everything you've tried? Is the Mg gland probing worth pursuing?

[DCRdryeye]

Hi JJ, I've had severe dry eyes since 2007, it's amazing how quickly time flies. I don't see Scleral Lenses on the list, you in the USA so practically anything is available to you. But if price is a problem there is a forum discussing cheaper sclerals (eg: Jupiter lenses). Your Schirmers is not tooooo bad, many of us have 1 or 2. (mines 1 and 0 on the other eye).
Do you wear moisturizer chamber glasses during the day?

[JJdryeye]

DCRdryeye,

I'm actually not too familiar with the Scleral lenses, and they've never been suggested to me. Do you feel they are more of a last resort type of treatment? I don't wear any type of moisture chamber glasses during the day, but I'd really like to get something for driving as the ac is murder on my eyes. I've tried wearing moisture chamber goggles at night, but they actually make my eyes much much worse.

[DCRdryeye]

Yes and you said you've had a break from bothering with your eyes for two years. So you may have missed a few things like Testosterone drops, etc. Yes Scleral Lenses tend to be the last resort, there are many success stories on this forum how they've worked so well and changed peoples lives. Of course, there are the few that can't handle them.
I wear moisture chambers 24/7 I couldn't go more than one hour without being in "agony" without them. You can get them from here at the dry eye shop. In Australia they sell them at "Harley Davidsons Motorcycles" and other locations where we can try them on for fit and style, so they are really to keep strong wind from the eyes. However for us, they work really well.

[NotADryEye]

NotADryEye,

Thanks for your response. I actually only live about an hour from ******. But I just can't afford him. I'm sure he's good, but it's just not possible.

One thing that has really frustrated me is the inability to get a specific diagnosis from any of the doctors I've seen. Unlike yourself and many others on this site who seem to know exactly what they are battling, I just seem to get lumped into a general dry eye category by the doctors and thus given a 'general dry therapy' to try.

What do you think has helped you the most of everything you've tried? Is the Mg gland probing worth pursuing?

JJdryeye,
The best way to find out how much Dr. ****** charges is to call the office. 813-875-0000. Ask to speak with Sherry. She will explain everything.

Getting a diagnosis his 90% of the battle and the term Dry Eye is terribly inadequate. You might have aqueous or evaporative tear deficiency, Meibomian gland dysfunction, etc. etc. Each of these needs to be treated individually, with different approaches. Most doctors, even those who treat “dry eye,” are not specialists in dry eye treatment. So they do what is generally accepted or prescribe treatments that are statistically supposed to work. But for an individual, like me, and probably you, statistical diagnosis or treatment is worthless. I needed individualized treatment (Note: there was the doctor who even after I had AMT surgery for conjunctivochalsis didn’t believe that I had had the surgery because it is very rare and he had never seen anyone in his office with that problem in 30 plus years of practice. And this was a surgeon who was highly recommended. This is another reason why I would suggest Dr. ******.

What has helped me is everything I do. Without the surgery I would still be in agony. Without the probing I would still be in agony. Without treating bacteria I would still be in agony. Without treating demodex I would in much worse shape than I am now. But remember, what works for me may not work for you because your particular manifestation of Dry Eye is not exactly like my manifestation of Dry Eye and our bodies are not the same. So what I can or can not tolerate and works for me may be completely different from what you can tolerate and works for you.

If you are only 1 hour away, why not make an appointment? Call me if you would like. We can talk. I will send you my phone number via pm.