Dry Eye sufferers - please read entire thread

[cureforeverything]

I have just posted this in the blepharitis sub-forum.

Firstly, my very very brief story - Was for the most part completely healthy up to the age of 24/25, sudden onset of 'blepharitis' and 'dry eye', now 3 years later it gets worse and worse. What i've tried so far - 10-15 normal doctors, 7-8 optometrists, 3-4 opthamologists, 2-3 acupuncturists, psychologist, naturopath, reiki, 2 kinesiologists, + many more types of therapies, as well as spending 100s on eye drops, ointments, etc. So as you can see i've tried a vast range of therapies for zero result, and the symptoms continue to get worse. It has affected my work, social life and everything that you guys already know.

The main thing i refuse to listen to from western medicine is that it is incurable. If someone can't tell me what causes something then i refuse to believe that it can't be cured. I can take 'there is no known cure', or 'presently to the best of my knowledge this illness can only be treated and not cured'. But to say something is 'not curable' when you can't even say why it's happening is absolute crap. I know there's a layer of oil missing from the eye, build up of bacteria, excessive production of oils blah blah blah but that is not the cause, they are symptoms of an actual cause, then the eye problems are symptoms of those symptoms. Happy to argue this with any health professional out there.

My rant is now over. So why i'm posting is that i'm going to find the cure, and i'm going to find this cure in the next 6 months because i'm done with this s*** and want my life back. What I need from anyone that's willing, is participation in a survey that i'm currently preparing, i need as many people as possible to participate to give me the best chance at finding the common cause, i already have a strong idea i know it but looking for confirmation and anything else i'm possibly missing. The survey will only take 10-15 mins of your time. I'm really hoping that what i produce is a 'one cure fits all', but at the very least if i can cure one other person on here then i'm satisfied.

If you're interested, please email me.

Look forward to hearing from you.

[cureforeverything]

Ok so email address has been removed from my post, so please if you want to find a cure for your problem please private message me. Come on guys surely you're sick of the years of pain and would be willing to complete a survey/questionnaire in order to help find a cure.

[Rebecca Petris]

Hi CFE,

I did not do that to discourage people from emailing you. If you click on your username, you will see the email option. Anyone who clicks on it fills out a form with an email that goes direct to your email address. You'll get less spam that way than if you post your email address for the world to see.

Have you considered posting your survey in one of the free online survey tools? You will probably get a lot more responses than if people have to email you for it.

[cureforeverything]

Hi Rebecca,

Sorry I didn't intend for my post to be rude, I wasn't aware people could find my email, thanks for the heads up though.

I might have a look at the free survey section, i'm just baffled at the amount of people that write on here with their complaints and worries, yet no-one has responded about this. I'm in a position right now where I'm on the verge of potentially one of the most significant discoveries of so called 'incurable diseases', and if no-one is interested then that's their call. I've been a long time reader of this and many other forums on such issues and would have done anything for an opportunity like this.

Thanks for your help though, i'll just wait and see if there is any interest.

[Guest]

I'm in a position right now where I'm on the verge of potentially one of the most significant discoveries of so called 'incurable diseases', and if no-one is interested then that's their call. I've been a long time reader of this and many other forums on such issues and would have done anything for an opportunity like this.

Grand statements from a stranger on the internet with unknown credentials... (not saying that's good or bad... just observing)

[cureforeverything]

I never asked for money, contact details, social security no., bank account details, or identification. Your observation is unneccesary and egocentric.

[eye_allergy-kids]

I am ready for the survey
I feel the cause is
vaccination
constipation or digestion problems
some sort of problem in small bowell
some problem in colon
all sorts of tinned canned bottled packed processed preservative added food


I request the admin to start a tread " cause of dry eye" "what age it started"

[Guest]

Your observation is unneccesary and egocentric.

Ouch! Sorry if you feel my observation was egocentric.

Look, it's just that we've seen others on this forum in the past who have claimed to have found the cure for dry eye and it turned out to be not quite as fabulous as the individual made it out to be. He had good intentions, as I'm sure you do... but because of things like that, I think many people who have been around this forum for a while are skeptical of anyone making claims to have the "cure" for dry eye.

Add to that the fact that there are tons of different reasons why any particular individual has dry eye (ex. hypothyroidism, nerve damage from refractive surgery, autoimmune diseases, ocular rosacea etc.), that it makes it hard to believe that a person of unknown credentials has found a "cure". When dry eye has so many different causes, there is unlikely to be a single cure... most people probably figure that their issues are likely to be caused by something different than yours, so taking the time to do your survey won't benefit them.

Maybe you'll get more interest in your survey if you remove some of the mystery from your post...provide more info on why you feel that you are so close to finding a cure for dry eye... more info on your own situation and how the cure relates to that and might help others etc.

[Rebecca Petris]

"Egocentric"? Hardly. I thought SAAG was spot on. If you have participated in online communities I'm sure you will appreciate that you have to build up relationships (as in any other kind of community) and let people get a sense of who you are and what you're about.

You said:

"I'm in a position right now where I'm on the verge of potentially one of the most significant discoveries of so called 'incurable diseases', and if no-one is interested then that's their call. I've been a long time reader of this and many other forums on such issues and would have done anything for an opportunity like this."

In my experience over the years I've seen people here are quite happy to fill out a survey, as long as it's not going to get them on a spam list or something like that. But expecting them to get excited the idea you (someone we don't know anything about yet) are going to find our cause and cure imminently through it is a bit of a stretch. Bearing in mind that "dry eye" is not "a" disease. It's a catchall term for many different conditions. We've got people here who have nerves severed by surgery, people who have eyelids too short because of an eyelid surgery, people whose lacrimal glands were killed by radiation, etc in addition to the more classic types with chronic bleph, rosacea, autoimmune etc.

p.s. Only about 3 hours elapsed after your first post before you said you were "just baffled at the amount of people that write on here with their complaints and worries, yet no-one has responded about this." You have to give people time here. As in days (at least), not hours.

[Rebecca Petris]

I request the admin to start a tread " cause of dry eye" "what age it started"

If you have a question you want to poll users on, you can go to the Dry Eye Polls forum, then click on "Post new thread" then scroll down a ways till you see the "Post a Poll" option. If you need help just let me know what the poll question is and what answers you want listed as options and I can post it for you.

CureForEverything, the poll option here is probably not suited for the kind of thing you're talking about (it's very limited). You might try SurveyMonkey

[AprilShowers]

CureForEverything: In principle I agree with you, there is a cure but in practice it's a cure for just a tiny percentage of sufferers. My own guess is a lot of MGD problems are dandruff related but they represent about 40% of the total patient influx, you will then have another five sufferers who your cure won't cure. To be frank you need 6 x cures to treat us all, and the Doctors have not found one. Before I write anymore let me add this is what I think my condition is in part [Quote] Dandruff is a form of skin inflammation which has no known cause and can appear at any time, from infancy to old age.

Over the years I have blamed working with glass fibre insulation and asbestos for 25 years, getting cement in my eyes, also oil, petrol, gas, and kissing a wonderful person for 7 years who unknown to me had herpes X-Y-Z, in my most fanciful moments I wondered if I had had one of those laser lights shone on me, or exposed to Kryptonite. We have an eye-condition which scores very low on the Richter scale of human awareness. I wish you well, if you want a good book to read then find a Doctors expose of the Cancer Industry and the Mexican Cancer Cure Scams. My private view is when we feel well our illness is simply in remission and a permanent cure will not be found. Prove me wrong.

[robster]

Cureforeverything perhaps if you were a little less vague people might be more inclined to pm you. If you really do think you're on the verge of a cure why all the cloak and dagger secrecy?

[cureforeverything]

Ok, I can admit when i'm in the wrong, and yes here i'm in the wrong, so i'm very sorry to anyone i've offended, especially SAAG, sorry what i wrote was uncalled for.

Look i don't have any credentials but what i have that dry eye and blepharitis doctors don't have, is dry eyes and blepharitis, and a will to fix it. If normal treatment (lid scrubs, compress etc) worked for me i wouldn't have posted, but it doesn't. I'm not promising and never promised a cure to everyones problem, but i'll refuse to believe that there's not a cure for everything after i saw first hand people cured of cancer, HIV and aids.

I guess i got excited that everything fell into place about why i first got the problem and that it's the first time i've had hope of getting my life back after 3 torturous years. I didn't mean to be secretive or anything, just didn't want to throw out a bunch of information that seemed confusing and unrelated as it is at present. I have pages and pages of research that at the moment would cause more confusion than help.

So I'm going to go about this a different way. I'm going to cure my dry eyes/blepharitis/any other term the doctors want to give it, and when I have I'm going to post on here exactly what I did and hopefully someone, even just one person can use the information to cure their own.

Rebecca feel free to delete the entire thread

[Hopeful2]

cureforeverything,

I think it is great that you want to share your thoughts on a cure!! This is exactly what this community is about . . . a place where we can come together and share the research we have done, the treatments we have tried, the success (or lack of) that we have experienced.

If you have not yet 'cured' you eye situation, you might find it really helpful to share what you have tried to date. . . ask some questions . . . share some thoughts. If a survey format works best for you, go ahead and start a new thread entitled survey.

There are a few surveys posted here and I really have found it beneficial to read the responses of others who share a similar dry eye profile. I would really like to see what questions your are interested in presenting. I bet there are others who have similar questions, so I wouldn't be shy about posting them.

BTW, Rebecca is the most sincere, knowledgable, and compassionate administrator you could find on a health forum . . . maybe you should read through some of her posts . . . you might learn something more about dry eyes, and you will certainly learn of the caring nature of this community that Rebecca has put together.

Hopeful2

[Guest]

Ok, I can admit when i'm in the wrong, and yes here i'm in the wrong, so i'm very sorry to anyone i've offended, especially SAAG, sorry what i wrote was uncalled for.

No worries... no hard feelings!

I didn't mean to be secretive or anything, just didn't want to throw out a bunch of information that seemed confusing and unrelated as it is at present. I have pages and pages of research that at the moment would cause more confusion than help.

You never know what little tidbits of info will help someone... might be worth throwing some of it out here to see what people think.

I'm going to cure my dry eyes/blepharitis/any other term the doctors want to give it, and when I have I'm going to post on here exactly what I did and hopefully someone, even just one person can use the information to cure their own.

Success stories are always welcome - it's great when someone comes along who is able to beat this thing and get their life back!