Reached the end of the line and now I've lost hope.

[unicorn]

Hi Savino,

I think you really could be onto something noticing the correlation between stress/depression and the severity of your eye symptoms. I've had this dreaded disease for over three and a half years now, and the stress, depression and anxiety it's caused has been so extreme there have been times I've considered ending my life.

I too have tried a huge number of treatments, with very little success, but what I do find for sure is that stress reduction is among the best 'treatment' there is. Easier said than done, of course, but for me, mindfulness meditation has been enormously helpful, and I will also say that antidpressants have been benefical too. I wrestled with this for such a long time, as of course you will always read about how they can cause extra dryness, but personally I am pretty certain they don't in my case, and in fact I think my eyes probably feel a bit better now I've been taking them for a few months, because of the improvement in my metal state.

It was just over a year ago that I finally found an excellent ophthalmologist, and one of the best pieces of advice he gave me was to emphasise the importance of staying positive through all this - not in a "hey, look on the bright side" kind of way, but he explained that it would help my immune system to function better, and my eye problems are immune-based. And do you know what, he was absolutely right.

Do I still have dry eye? Yes I do. Do I have hope that this will get bettter? Mostly, yes I do - there are always black days, but as you've said above - the next day may well be better, and there are always new things to try. Even your posts re seb derm, lipids, fat metabolism - have given me new things to consider, and I'm grateful to you for that.

[LaDiva]

Wonderful responses and great things for me to consider. I also believe my problems started with an eye infection, but the problem was most likely already there just waiting for an opportune moment to appear. I've had severe dry eye for 6 years, and it has been a real battle. There are so many different things that affect my eyes: diet, adherence to treatment, weather, pollution, stress, exposure to chemicals, lack of sleep and the list goes on. I am much better than five years ago, but certainly not well. It took three or four years to just be in the position of having a level playing field. I literally had to claw my way back to some semblance of health with regard to my eyes. Not sure if I will get much better or not, but there is always some hope there, and I keep trying. You did not say whether or not you are plugged. With soapy tear film, that is a hard call, but you might consider upper plugs and none in the bottom. Do you have sealed goggles? These helped me immensely and gave the eye surface an opportunity to heal. Five years ago I had a TBUT of 3 seconds, mucous strings, tremendous light sensitivity, soapy tear film and overwhelming pain. My TBUT is around 8 now, no more mucous strings or light sensitivity and less pain. I also only need drops 3 or 4 times a day now, as opposed to using a package and a half a day. It took years, diligence and five eye doctors. I am thinking about changing doctors again as the one I have now is done with trying anything different and is not very empathetic. He sees that the eye surface is healed, and therefor I am well. Not. I agree with everything everyone has said here. Hang in there. It will get better, but you are going to need to be merciless with recommended treatment. Maybe give yourself a rest from the extra vitamins and other self-prescribed treatments for awhile? Frankly, the things that have worked best for me are diet (including omegas), compresses, expression, plugs, goggles, scrubs and stress reduction. I do believe you will get better. Maybe not well, but better. Sending very best thoughts and good wishes.

[geminijo]

Such heart-warming responses, so important when complete loss of hope sets in. I wish you all lived in Christchurch, NZ and we could meet! Just a long shot but is there anybody else on here from Christchurch that knows of a support group for dry eye sufferers?! This forum is the only thing that makes me feel not alone in this battle....

[savino]

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[OompaLoompa]

1. You have listed whole supermarket-shelves of honey, oil, food etc.However, instead of buying tons of honey, oil etc. (probably not even in close consultation with your doctor?) you maybe should have tried cyclosporin/retasis first? This is very strange to me. Cyclosporin by now is an absolute standard approach and before I put honey on my eyes I'd rather go with something that has been profoundly researched and pratically proven to help many dry eye patients.
(Note: By no means I'm claiming that "alternative" treatments are useless. However, it is about priorities.)

2. Did you get tested for candida?

[savino]

Bashkaran K., Zunaina E., Bakiah S., Sulaiman S. A. et al. (2011) Anti-inflammatory and antioxidant effects of Tualang honey in alkali injury on the eyes of rabbits: Experimental animal study. BMC Complementary and Alternative Medicine

Shenoy R., Bialasiewicz A., Khandekar R., Al Barwani B. et al. (2009) Traditional medicine in Oman: its role in ophthalmology. Middle East African Journal of Ophthalmology 1

Albietz J. M. & Lenton L. M. (2006) Effect of antibacterial honey on the ocular flora in tear deficiency and meibomian gland disease. Cornea

Sethi H. S. & Rai H. K. (2005) Bullous keratopathy treated with honey. Acta Ophthalmologica Scandinavica

Mansour A. M. (2005) Reply. Acta Ophthalmologica Scandinavica

Meda A., Lamien C. E., Millogo J., Romito M. et al. (2004) Therapeutic uses of honey and honeybee larvae in central Burkina Faso. Journal of Ethnopharmacology 9

Mansour A. M., Zein W., Hadda R. & Khoury J. (2004) Bullous keratopathy treated with honey. Acta Ophthalmologica Scandinavica

Karabulut E., Durgun T. & Durmus A. S. (2004) Use of honey in treatment of cornea alkali burns. Indian Veterinary Journal

Al-Waili N. S. (2004) Investigating the antimicrobial activity of natural honey and its effects on the pathogenic bacterial infections of surgical wounds and conjunctiva. Journal of Medicinal Food

Bielory L. & Heimall J. (2003) Review of complementary and alternative medicine in treatment of ocular allergies. Current Opinion in Allergy and Clinical Immunology

Mansour A. M. (2002) Epithelial corneal oedema treated with honey. Clinical and Experimental Ophthalmology

Vit P. Stingless bee honey and the treatment of cataracts. In: Munn P & R. J (Eds). Honey and healing. Cardiff: International Bee Research Association

McDowell A. G. (1996) Daily life in ancient Egypt. Scientific American

Alio J. L., Ayala M. J., Mulet M. E., Artola A. et al. (1995) Antioxidant therapy in the treatment of experimental acute corneal inflammation. Ophthalmic Research
Mozherenkov V. P. & Prokof'eva G. L. (1991) Apiterapiia glaznykh zabolevanii (obzor). Vestnik Oftal'mologii

Sarma M. C. Honey in the treatment of bacterial corneal ulcers. Personal communication cited in Efem, S. E. E.; Udoh, K. T.; Iwara, C. I. (1992) The antimicrobial spectrum of honey and its clinical significance. Infectio

Popescu M. P., Paloş E. & Popescu F. (1985) Studiul eficacităţii terapiei biologice complexe cu produse apicole in unele afecţiuni oculare localizate palpebral şi conjuctival in raport cu modificarile clinico-functionale. Oftalmologia

Osaulko G. K. (1953) Use of honey in treatment of the eye [in Russian]. Vestnik Oftal'mologii

Emarah M. H. (1982) A clinical study of the topical use of bee honey in the treatment of some ocular diseases. Bulletin of Islamic Medicine

[OompaLoompa]

Oh, so you also suffer from cataracts, ulcers etc.? If so, you should have mentioned it since you then have a very specific case of dry eye.

If not, why do you give links to studies that have nothing to do with dry eyes?

In fact there seems to be exactly one study in that list that actually deals with honey in dry eye treatment.

Also, you can post studies all you want, there is a reason why none of the doctors or facilites (universities) I have been to have ever (!) even mentioned honey. They do top level research there and smearing honey on your eyes is not the priority in dry eye treatment.

Additionally if you look through medical papers about that topic or read on serious webistes about it you simply won't find much about treating dry eye with honey.

What is so strange about trying to find a solution?

As I said, I'm not trying to discredite alternative approaches here. And of course there is nothing strange about "trying to find a solution" itself. It's about the order, about priorites.

I've recommended restasis to one of my doctor's but she wouldn't put me on it.

And?

1. I had one retarded doctor too who didn't want to prescribe Azyter (azithromicyn) to me even though TheaPharma itself stated in an email to me that they literally don't see any risks, only benefits in attempting to treat dry eye with azithromicin.

I went to another doctor, explained my situation to him in 5 minutes and walked out with a prescription.


I was just trying to give an advice but whatever.

[savino]

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[OompaLoompa]

It's not a "problem", it's a point, an argument.

Emotionally I do understand that one might have the feeling of having "lost all hope", of feeling helpless.

However, from a rational point of view I find it absurd to claim "having reached the end of the line" and having "lost all hope" to then list tons of honey, oils, food etc. while you didn't even try many of the standard approaches in current dry eye treatment.

1. Cyclosporin (Restasis)? Why wouldn't you try it? Or, rather why haven't you tried it and instead spent money on honey (^^) before even knowing that the standard approaches don't work for you.

2. You state that you have only used warm (matter of definition but I'd say they should be hot btw.) for 3 months? If your doctors considered it necessary for you to start using compresses you probably should continue. I have been dealing with dry eyes for about 3 years now and I'm still doing hot/warm compresses (actually BlephaSteam). I'd say for easily a year I didn't feel any improvement at all by doing it. Still I continued. And it helps. There is a reason why every doctor will tell you to do it while basically none will tell you to use honey.

2. Doxycyclin: Ok, you tried it but as far as I know 3 months are not enough to definitly know that it doesn't work. Many doctors suggest 6 months or even more.

3. Scleral lenses? To me they sound very promising and even though I'm still trying to find the cause of my problem I would never get the idea to claim having reached the end of the line without having tried scleral lenses.

4. Meibomian gland probing

5. Lipiflow


I'm just trying to point out that rationally you surely are not the "end of the line".


Oh, and just to quote from Optimel quickly: "The reduction in CFUs may also assist in improving the clinical symptoms of dry eye disease(...)"


Edit:
And I'm still interested: Did you get tested for candida?

[savino]

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[Rebecca Petris]

Please keep the conversation civil!

[lizlou29]

I think you are doing the best you can for yourself Savino, you seem to understand your condition pretty well.

Stress is a huge trigger for me too. My eyes went from mildly dry to severely dry after a stressful time in my life. I will second Unicorn about getting the depression/ anxiety/ stress under control as much as possible, I too have had mindfulness sessions and they definitely helped. I don't suffer from depression but if you aren't already taking an antidepressant perhaps look into this and some form of counselling.

Finding a good ophthalmologist was key to reducing my stress levels. I understand how frustrating it is to be sent away with drops and be told to do warm compresses as if this is a cure-all.

Please don't lose hope, you are not alone.

[OompaLoompa]

My main problem is saponifiaction which is caused by bacterial overgrowth

And please stop asking me about candida.

That is the reason for my question about wether or not you got tested for candida. From what you've described you just randomely picked a diet out of the internet, follow that diet-plan for a few weeks and then you were done with it. There are several tests for candida, for example antibody-test.

Now, if you came to the conclusion that "saponification" is your problem in the same, unscientifc way without any help, let alone scientific analysis from doctors, I would be in doubt about the accuracy of your assumption that your whole problem is "saponification".
Also, see what you wrote here (I did read what you wrote.):

I too dealt with incompetent ophthalmologists. (...)She didn't even tell me about warm compresses.

So, if you claim that doctor was incompetent because she didn't mention warm compresses one would assume that you consider warm compresses to be an appropriate treatment in your case? Otherwise that doctor would have acted perfectly competent by not mentioning what does not help you.
However, here you are claiming that Lipiflow would not work while Lipiflow has the same idea behind it as warm compresses. I'm confused.

(And if your problem is bacterial overgrowth those antibiotics did help? Because at least short-time they should be effective then, shouldn't they?)

Three months is enough to see improvement on doxy but I haven't seen none. It is not even advisable to be on oral antibioitics for long periods of time, it's common knowledge.

There are doctors who think different. And you can also find different opinions on the web about that.
Doxycyclin is an antibiotic that has proven to be relatively safe for longer courses. It is arbitrary to draw the line at 3 months.

I've had people contact me who are in the same situation as me feeling helpless and expressing thier compassion. But you probably don't understand.

Which is why I clearly differentiated between an emotional and a rational perspective.


Anyway, I was just trying to help by being relevant to the case. But if you prefer to keep consulting grocery stores instead of trying out the standard treatments that have been established in the sector of dry eye: Ok, that's your decision. (Note one last time: Alternative treatments, including honey, are totally fine and it's good that they exist but it's a matter of wrong priorities if you first buy honey, oil and whatever before something as basic as cyclosporin.)

And again: You haven't tried cyclosporin (restasis) or scleral lenses. Also, I assume you did not get tested for demodex?

[lizlou29]

OompaLoompa please show some courtesy towards Savino who is in need of support, not interrogation. This is a supportive community.

[OompaLoompa]

Yes, and the moment he stops being stubborn what I wrote will actually help him.
But that is up to him now. I'm out of this thread.