Two years of uninterrupted remission, with no end of joy in sight

[Rojzen]

October, 2010 will mark the third anniversary of my first attempt to venture into a large hall/space, and outdoors, without my moisture chamber glasses tightly affixed. I am already, though, well in to my second year of full remission from the disablingly severe dry eye that defined my life from 1998 through early 2008. Many community members here know my story, but I wanted to visit again, to make sure that newer members in search of a real basis for hope know that remission is possible.

The 10 years during which I did not improve included trials of every then-available therapy (some rather obscure and experimental). Some of those 10 years included a little pain relief, through systemic neurogenic pain medication. The BEST moments of those10 years were spent here, at DEZ, where I met and formed the hope that kept me going. Rebecca's miraculous and unrelenting dedication to making Dr. Holly's drops available to us was what ultimately started me on the physical healing.

Seven months after using no treatment other than Dwelle, I was able to spend extended periods without goggles/chambers on. Shortly thereafter, I set aside the chambers for good. All the while, my symptoms steadily dissipated. Today, while I would surely still be classified a dry eye patient, so long as I continue with my Dwelle treatment, I am only very rarely aware of any ocular sensitivity.

Over the years, I am learning that a decision to commit to a single, sustained treatment can be very difficult for anyone who has forgotten how to hope. Even a colleague in suffering may not be able to convince. For those, however, who are able to dare to hope, I recommend with my whole heart the writings of Dr. Holly regarding oncotic pressure (as affects tear film stability) and the healing of abnormal corneal epithelium. Visiting and revisiting these writings can be a life-changing experience.

[Plat]

Great to hear that you are doing well.

Just curious. Has anyone else used dwelle for a prolonged period(3-6 months) and seen improvement?

[VirginiaDryEye]

I've use Dwelle w/ Restastis and Lotemax.

While the winters are still a bit challenging; I'm really close to normal from May through November. I have no idea how much each of these three treatments contribute to my relief. My doc says he's a little "chicken" to cut back on either the Restasis or the Lotemax.

[stella]

Hi Rojzen - dear friend and fellow sufferer
So good to hear from you, and so pleased to hear you continue to be well
I still recall your helpful posts with all the atention to detail that you were so good at ,also the beautiful wedding photo of yourself
I am good too at the moment
Back on doxy which is definately helping
It is 2 and a half years since i took it, so thats pretty good

I recieved a bottle of Dwelle a few weeks ago from Rebeccas shop but am keeping it in reserve until my symptoms get bad again
Its more difficult for us in Europe as we have to get it posted long distance
The best thing would be to get large supplies at a time although I would have to be sure it worked well for me to do that

of course i keep up the eyelid hygiene routine - which is a life long commitment -It does make my eyes look red and puffy Fortunately i wear glasses and that hides the problem and also glasses magnify your eyes making them look bigger

Do you still do eyelid hygiene ?
All the very best
Stella

[MNJen]

Syptoms

Glad to hear you are in remission. It is so hard to even imagine. I know I do not want to hold out hope. Cannot handle the let downs.


Can I ask what your DE issue(s) was? Was it AD, MGD?
I am severe AD.

Thanks!

[Rojzen]

fear not hope and fear not Dwelle!

Hi, dear Stella, compatriot of longstanding, and thank you to others who have responded and posed questions. . .Praises, in meantime, to doxycycline for coming to the rescue for so many. . .

First: Yes, I still do modified lid hygiene, but I keep it very gentle, and focus primarily on doing only a little more than massage, as I remove the Dwelle residue. I suspect that the mechanics of gentle stimulation of the meibomians is more important, for me, than is a chemical cleansing away of residue or dead tissue. . .

RE: my diagnosis, and how it may relate to Dwelle's success for me: I have generally been an MGD patient, but there have been times of severe AD for me, as well. Here's my thinking, though: One of Dr. Holly's premises is that correcting surface-tension abnormalities in the tear film is key to helping the corneal epithelium to heal from microscopic-to-grosser levels of erosion that develop after a period of dry eye. I have found nothing in Dr. Holly's writings to rule out that Dwelle can help to correct AD tears, but at the same time, I've never heard of a case of AD dry eye that didn't also manifest with some MGD.

Even, therefore, if Dwelle were more useful in MGD cases (and I don't know that it is), the MGD component of predominantly AD cases would still potentially respond to Dwelle, thereby potentially getting the corneal healing process to start. In turn, improved corneal integrity plays its own role in maintaining normal tear behavior. . .(All of this is so much better said in Dr. Holly's writings, of course.)

If I had to speculate, I would say that whether Dwelle will assist in a given case, regardless of causation, may depend on dosing frequency and technique (time of day/night, length of keeping eyelids closed after dosing) and, most of all, on dosing duration. If I had not found remission on my twice-daily regimen, I'd have moved up to as many as 8 doses a day (I recall that Dr. Holly advises against more). . .and then would taper downward, if I could. I would not give up until I had maxed out on Dwelle, because it was clear from the start that even infrequent dosing was changing my tear film. And I don't plan ever to discontinue Dwelle, in light of what it has achieved. . .

More importantly, though, I so wish I could help friends here to overcome their fear of disappointment. Lately, I am hearing privately from many who deserve a real break, and who have put their hearts and souls into seeking a cure; but no one who inquires, so far, ever leaves the exchange willing to study Dr. Holly's writings, and then to use these materials as a source of hope.

Can it be that we sometimes allow something as surmountable as possible temporary disappointment to stand in the way of what can, for some, be the equivalent of cure?

If I had to guess about that issue, I'd say that doctors probably have convinced many of us to avoid hope like the plague. The endearing doc, reported in this thread, who is "too chicken" to stop Lotemax is an example, perhaps. . .Lotemax is a corticosteroid. . .At some point, this doc may become "too chicken" to continue with it, given its potential risks, and I am hoping that his/her fear will then be forced to morph into a good old-fashioned dig through the literature that leads to hope of more lasting and safer solutions (like long-term high-oncotic pressure drops). . .

In any case, fear not hope, and fear not Dwelle! (:^)

[liz56]

Hi, Rojzen!

I'm so happy for you!

And, plat, yes, I am a regular user of Dwelle, and it has helped me in the long term.

--Liz

[Rojzen]

friends! TBUT today up to >10; subjective and objective

Hi, Liz! Wondrous to you see again, and please know you're on my mind each and every time I reflect on Dwelle's benefits to corneal healing. Examples of Dwelle helping both as a solo therapy and as a component of a multi-approach strategy are so important, I think.

I have an update for this thread, in meantime. Just got in from a visit to my local ophthalmologist, and my TBUT in one eye has jumped from a range of 0-4 seconds, last year, to consistenly over 10 seconds now. The other eye is experiencing a nasolacrimal duct drainage issue that has caused some prolonged irritation, but even in that slightly irritated eye, TBUT today was consistently 4 seconds, up from 0-4 last year. Once drainage is fixed, I sense TBUT in both eyes will read steadily at >10, which is normal range. And though I'm having the irritation in one eye, there is no pain, redness, or menthol sensation accompanying it. . .

Since I've used nothing but Dwelle or FreshKote for the past year (and longer), I think it is safe to say that time has continued to work with Dwelle to create and enhance tear film stability in my previously tortured eyes. . .

That said, I KNOW that it is very possible to feel good even when TBUT is poor, because even a year ago, (about a year after start of Dwelle as my solo therapy), my eyes were feeling very comfortable, all the while my TBUT was still in the 0-4 range in both eyes.

[Guest]

So nice to hear that you're still doing so well! I remember reading your threads way back when I was a mere forum lurker, and being so excited that someone who had suffered for so long was able to finally get their eyes under control! It's fantastic that the improvements have been so long-lasting!

[Plat]

Hi Rojzen, do you use dwelle prior to taking TBUT. Thanks

[liz56]

Rojzen,

I'm happy to hear about your improved TFBUT! Mine's still low at 2 seconds, but I do have the problem with unevenness caused by the dystrophy. Imagine the pain without Dwelle.

How often are you using Dwelle these days? I use it about every four hours. It's such a treat; I look forward to putting it in.

Thanks, again, for letting us know how you are doing.

--Liz

[Rojzen]

Hi, Chemia! and thank you for the warm thoughts. It has been a pleasure hearing from you, and your questions have always prompted me to go back into Dr. Holly's writings in order to understand them more deeply. Plat and SAAG, your comments and questions are most excellent, too. . .They help me to paint a fuller picture.

Yes, I used Dwelle prior to this morning's TBUT test. I dosed my a.m. drops at about 7:30, and then saw the doctor at about Noon. Interestingly, the flourescein and dilating chemical used for the exam were predictably deleterious. After the exam, I rinsed the eyes with sterile saline, and then instilled Dwelle a few times, but for several hours, old symptoms returned, until Dwelle and my cooperating tears/cornea could catch up. No surprise there, for me, since I do need to keep steady with Dwelle in order to remain stable. I cannot say whether Dwelle was actually still present on my ocular surface during the TBUT reading (my doc knew I'd used Dwelle today, btw), but I don't focus on anything but whether my operating TBUT, with or without Dwelle still present, is good. And as I've mentioned, it no longer concerns me at all that I am dependent on Dwelle for prolonged stability of my tear film, since Dwelle is so benign. What is most interesting so far, though, is that the benefit I receive seems to be additive/cumulative, in that one year on Dwelle improved my TBUT only slightly (but improved symptoms greatly), while 2 years on Dwelle seemed to produce a significant improvement over TBUT measurements from all prior years. This evening, btw, I am back to AOK, as the effects of the flourescein and other tear destabilizers wane...

To answer further: My glands are still mostly atrophied (and sluggish, at best, where they do function), and Chemia, you have, through this question, zeroed in on exactly what I believe to be Dr. Holly's most important implied finding: i.e., that the secretions (e.g. mucin) of corneal tissue, and the integrity of corneal epithelium, are most directly related to tear film stability, with lipid secretion by adnexal (e.g. meibomian) glands being important, but less determinative. I do indeed suspect, Chemia, that the only reason I've been able to reverse my symptoms, despite glands that were described not only as atrophied, but even overgrown with metaplasia, years ago, is because Dwelle altered the function of my corneas.

Further answer: I have not used antibiotics (oral or topical) for at least 8 years, now, though I would not hesitate to try them again if they seemed appropriate. I currently have one punctal plug in one lower punctum. A parallel plug in the other eye fell out over 10 years ago, and the lingerer in the first eye remained. My doctors and I opted not to remove the lingerer, over the years, but also not to add any plugs. Before I started on Dwelle, the TBUTs in my two eyes were generally the same, even though one eye was always plugged. In addition, my symptoms in the plugged eye were always worse than those in the unplugged eye, before I started on Dwelle. Except for my current epiphora in the UN-plugged eye (probable nasolacrimal duct obstruction), my two eyes have felt pretty identical, on Dwelle, despite different plug status.

Bottom line, of course, is the body's ability to change and improve, even after long years of malfunction. For me, the catalyst has been Dwelle, and I suspect that Dwelle, taken long-term, could be the catalyst for many. Regardless, though, of particular catalyst, our bodies seem also to want to heal, though they also seem to want us to supply a good jump-start (:^)...

[Rojzen]

frequency of dosing (answering Liz)

Yes, dear Liz, imagine that pain! I'm so hoping that pain is now a very distant memory for you. I remember the indescribable courage you demonstrated in the early days, when fragile corneas forced you to sleep upright, and to avoid jostling of any kind. I am learning, from your post tonight, that dystrophy will naturally make tear film stability difficult, but I hope that like me, you have been able to remain largely pain-free even when TBUT is at 2 seconds. Inasmuch as Dr. Holly clarifies the relationship between the condition of our several cornea layers (and the degree to which they sometimes allow fluid to seep where it shouldn't be) and tear film stability, I wonder if I can find something in his writings to explain why pain may not be directly linked to TBUT (i.e., why one can be pain-free, even with a poor TBUT). . .

To answer about dosing: I'm still generally using a drop of Dwelle in each eye immediately before sleep, and a drop in each eye the SECOND I slowly open eyes in the a.m. (after which I keep eyes closed for about 5 minutes, before opening them again for the day) as my daily routine. . .

I have wondered, btw, whether, if improving corneal integrity was the reason for my remission, I might have recovered more quickly by using Dwelle at least 4 times daily, for these past 2 years. . .Hmmm. . .Food for thought. . .I so treasure my Dwelle that I'm reluctant to use it up quickly, but possibly it's time to experiment to see whether even more improvement is possible through more frequent dosing over the next year or so. . .

[boston]

Question about Dwelle and its crusties!!

People, I love the way Dwelle feels, and it does make my eyes feel better, BUT I am reluctant to use it unless it is before bed because of the crusty build-up that forms all over my eye lashes.
Does this happen to all of you all, or is there a way to avoid this? I seem to get a white build-up all over my lashes, and people look at me weird and tell me to wash my face.

[Rebecca Petris]

I'd try wiping the lashes with a damp tissue after applying the drops... and try to use as small a drop as possible.

Me, I like applying it very generously, then I wipe off the mess with a wet washcloth when it's just starting to solidify. But then, I only use it night and morning, so I don't have the issue during the daytime.