An extremely exciting idea

[lelagy]

Hi guys,

I'm a post lasik dry eye sufferer - I've been for serum quite a while now. The last few weeks I've been trying out a new treatment based on some conclusions I've drawn from articles I've read. It involves a bit of risktaking, so I won't explain what I do until in a few weeks after evaluating this, but the results are extremely promising. I will post a report here in the middle of May.

[westsnoop]

lelagy, I find posts like yours frustrating. You will find this a supportive community, and overall a desperate one. My desire to know if you are on to something is akin to a need to know. I would have preferred you not broach the subject of an mysterious new treatment rather than tantalize.
That being said, dam* i hope you are on to something.

[Guest]

Totally agree westsnoop.

Why not just tell us what you're up to and let us know how it's going week by week? That way no one feels like they're being led on in the dark, right?

I assume you posted this because you were just so excited by this thing, and not to frustrate anyone... but we can't help it... it's kind of frustrating if you don't spill the beans and just tell us what you're referring to... sorry

[DCRdryeye]

I agree too, why tell us you're onto something then keep it to yourself. We are seeking out every possible treatment from around the globe and are desperate for relief and something that finally works. So as SAAG said, spill the beans or don't post at all. All you are doing is causing us frustration. I'm suspicious though, don't like the sound of risk taking.

[westsnoop]

lelagy, in the thread below this you talk about anti-depressants as being a factor in your dry eye. If risk taking means suddenly quitting those drugs I think you should get the advice of your Doctor. I apologize if I am reading something into your post.

Edit: I read some of your posts in other threads and I get the idea (in very basic terms) what you may be trying to do. I think I read between the lines incorrectly. Sorry,

[soaps]

Lol share
i don't get how people say i have read this or that or u should research this etc.
it's like umm i have severe severe dry eyes i can't read without pain. i read here but skip long posts.
so if u can quickly summarise ur findings please do.
Hope u ok and perhaps we can provide some advice if u share

[lelagy]

I must say I got very hurt by your harsh feedback :-(

I won’t go into a discussion on whether I shouldn’t have written what I wrote since I think it’s a total waste of time and energy. So if you want to criticize me more, don’t expect any answer from me. Then again, I guess the strong reactions are a result of desperation, and I totally know about that desperate place.

I did a lot of thinking before posting what I did. My thinking was like this: I think I might be onto something that can really help people (and no, as someone was speculating – it has nothing to do with antidepressants). The reason for not sharing it immediately was that I didn’t want to expose more people to risk – I have extrapolated from some results from studies on animals – so I found it better I try it first – the last thing anyone of us need is adverse reactions from treatment. I had another treatment idea that I tried out a few months ago, and a few weeks it seemed like it worked really well, and I was so eager to post on the forum to tell you guys, but then some adverse effects started showing, so I’m really glad I didn’t post. So that’s one more explanation. But still I wanted to provide some hope – when I was at my worst, I would have preferred to read that someone was maybe onto something, than being in total hopelessness (since everyday was a struggle – I know you know all about this). These were my objectives for doing this post – if you don’t agree, please at least respect this and realize that it came from good intentions.

I will write up my idea and post it on the forum as soon as I can. It’s not possible to explain it in a few short sentences, so it will take some time.

And I want to ask two things from you guys who posted the criticism: if you decide to try this and get any side effects don’t you dare criticize me for it, and, if the treatment works for you, please provide me with some positive feedback at least in parity with the negative one you just gave me. Sorry, I got very angry and hurt so that’s why I word it like this.

[Guest]

Then again, I guess the strong reactions are a result of desperation, and I totally know about that desperate place.

And I want to ask two things from you guys who posted the criticism: if you decide to try this and get any side effects don’t you dare criticize me for it, and, if the treatment works for you, please provide me with some positive feedback at least in parity with the negative one you just gave me. Sorry, I got very angry and hurt so that’s why I word it like this.

No worries... look at this as a collaborative effort then, rather than as you being responsible for what comes of sharing your ideas. Everyone is responsible for what they choose to do to themselves, and most definitely, you shouldn't be held responsible for sharing something that you are thinking might be helpful.

I mean, if someone posted "I have the cure for dry eye and it will help all of you be normal again for sure!!!" I'd say they over-stated their case and ought to have toned it down a notch.

But if someone merely says that they have been researching possible things that may help, this is what they did, this is why they thought it made sense, and this is the result for THEM, that's cool. That's helpful and interesting reading, right?

[Tanner]

Many of us are desperate and those of us stuck at home staring at the wall in dim lit room (year 2) are more. I agree you shouldn't be held responsible for an idea. You are very smart in realizing for some it is like teasing. Out of many people on this forum, you are someone whose ideas I would really like to know. It is very nice of you to take the time to post your idea.

[lelagy]

Hi again!

Thank you for your friendly feedback! Now I feel so much better :-)

I will post an explanation of my idea in a few hours maximum!

[lelagy]

Guys! Here is my idea. I paste it below and also attach it as a PDF, which is easier to read.

Treatment of dry eye with 100 percent serum and DHA

I got this treatment idea when I read a few articles on Pubmed (a database where you could find medical articles). The articles are listed below if you’re interested. If you don’t manage to read or understand the articles, don’t worry, it’s only to provide background.

Neuroprotectin D1 Synthesis and Corneal Nerve Regeneration after Experimental Surgery and Treatment with PEDF plus DHA
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2868452/

Involvement of pigment epithelium-derived factor, docosahexaenoic acid and neuroprotectin D1 in corneal inflammation and nerve integrity after refractive surgery.
This article wasn’t available for free, and it was to big to attach, but at least you can read the abstract here: http://www.ncbi.nlm.nih.gov/pubmed/22579364

Omega-3 fatty acids in dry eye and corneal nerve regeneration after refractive surgery.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2856794/

Recovery of corneal sensitivity, calcitonin gene-related peptide-positive nerves, and increased wound healing induced by pigment epithelial-derived factor plus docosahexaenoic acid after experimental surgery.
This article isn’t free either, but you can read the abstract here: http://www.ncbi.nlm.nih.gov/pubmed/21911652


In the articles, animals that have undergone experimental corneal surgery are treated with a combination of the unsaturated fatty acid DHA (http://en.wikipedia.org/wiki/Docosahexaenoic_acid) and PEDF (http://en.wikipedia.org/wiki/PEDF). One of the results observed is increased neuronal regrowth in the cornea. The hypothesis presented in the article(s) is that PEDF converts DHA into something called NPD1 (http://en.wikipedia.org/wiki/Neuroprotectin) and that NPD1 enhances neuronal regrowth.

I’m on 100 percent serum, and I thought “what if PEDF is present in serum?” (since it’s very expensive to buy). And yes, it is, in relevant concentrations. I came across articles that reported levels of around >3000 ng/ml of serum in healthy subjects. Actually, the levels might be much higher in people with some medical conditions. 3000 ng/ml means that each daily dose of serum contains around 1000 ng per eye. In Sweden, you get the serum in plastic 1ml syringes (don’t know the proper word in English, but this is what I mean):
This is what I mean with a syringe: http://www.netmedical.se/products/Po...4-4af3d612dc01


Each syringe is filled with maybe 0,7 ml serum, and you’re supposed to use one per day, shared on two eyes. This means that the daily dose of PEDF that you get in this way is 3000 * 0,7, which is approximately at least 2000 ng, and then splitted in two (since it’s for two eyes), 1000 ng. I know that you always lose some of the drop because some is spilled/drained from the eye, and the mode of distribution was different in the animal experiments (they put the PEDF on a patch and placed it inside the eyes of the animals), but I think the amount is still quite decent – in the animals, a daily dose of 200 nanograms was distributed in each eye (400 nanograms on a patch that was left in the eye for 48 hours).

Next thing was getting some DHA. I found out it’s sold to companies (I don’t think you can buy if you’re a regular person) by Cayman Chemicals (https://www.caymanchem.com/app/template/Home.vm) or Cayman Europe if you live in Europe. This is what I ordered: http://www.caymaneurope.com/app/temp...alog/90310/a/z
It costed me around 130 dollars I think, including shipping.

I ordered 100 mg. On the webpage it’s stated that it’s only for laboratory and not human use, but I ignored this. The DHA comes in an ethanol solution. I calculated that using a 5 microliter pipette would be good (the 100 mg DHA is in a 400 microliter solution, so every 5 microliter “dose” contains a bit more than 1 mg (which is 1000 microgram = 500 micrograms for each eye – in the animal experiments, a patch with 400 micrograms is put in the animals’ eyes and changed after 48 hours).

I ordered this pipette (http://www.amazon.com/Volume-Pipetto...per+scientific), it comes with some pipette tips, so you don’t have to order any pipette tips separately. If you don’t know what a pipette is, here is an explanation: http://en.wikipedia.org/wiki/Pipette

As I said, when you get serum in Sweden, you get it in 1 ml syringes (see picture above). You put them in the freezer, and then you thaw and use one a day (keeping it in the fridge). If you get serum in larger amounts, I don’t know how you would do this – the DHA gets easily destroyed if stored in the wrong way – in the product sheet found on the Cayman Chemical webpage it says that an aqueous solution with DHA should be used within 12 hours (I keep it for one whole day though). This means you don’t want to mix the DHA in the serum (serum is mostly water) and then store it like that for long time. This is how I did: With the pipettor, I put 5 microliter of DHA/ethanol solution in each syringe of frozen serum. I place the drop in the upper part of the syringe and then put it together again, and put the syringe laying horizontally in the freezer again. I prepare about seven syringes at a time, to minimize the risk that the DHA gets destroyed.

When I thaw the syringe I let it thaw horizontally, and then I try to mix the contents by turning it up and down. The solubility (if you don’t know what solubility means, here’s an explanation http://en.wikipedia.org/wiki/Solubility) isn’t great – when the serum is still cold you might see some flakes floating around. I think when the serum becomes more room temperature, the solubility gets higher, so I normally start with letting the serum syringe lay out of the fridge for a while in the morning let the DHA dissolve (and maybe the enzymatic reaction starts as well), for ten minutes maybe. And then I use it as I use normal serum – but, as I said, I use up the whole amount in the syringe on the same day, and take a new one the next day.

I’ve been doing this for a few weeks now and it feels great – I hardly have any dry eye symptoms at all, I can work, I forget about my eyes, etc. BUT please notice that I’m not an eye doctor and I don’t know what this will do to the eyes in the long run. So if you decide to try this, it’s totally at your own risk.

I have tried to cover this as completely as I can. I will try to answer questions, but my time is limited.

If anyone finds it scary to put ethanol (an alcohol) in the eye, please note that the amount is very small – 5 microliter ethanol in around 700 microliter serum. There are normal amounts in regular eye drops.

I realise that these instructions might be hard to understand if you don’t have basic laboratory skills. I’m afraid I can’t really help you with that – if you think you don’t understand see if you can ask someone with that kind of training. But it is really very simple – using the pipette can be learnt easily with some training – read the instruction and practise with water, not with the DHA.

I have dry eye as a result of Lasik surgery. I think this treatment might be beneficiary even for people that don’t primarily have dry eye due to nerve damage, since DHA in itself has been shown to improve dry eye symptoms. Furthermore, in an article I’ve read, people with Sjogren’s for example, also have impaired corneal nerve function, not only people who have had Lasik etc.

If you decide to try this, please provide feedback!!! I study medicine and I hope to be able to write an article about this. I have presented my idea to my tutors, though I haven’t revealed that I’m trying it on myself.

[MartyM1985]

I read about the DHA stuff last month... it's interesting. I was wondering why present treatment options didn't seem to explore the use of it in treating DED.

Just be careful duder, and keep us up to date.

[Guest]

Thanks for posting! I downloaded your PDF to read later on when I have a chance

Crossing my fingers for you that this works!

[Pinky]

Thanks for posting your research lelagy, some exciting stuff!

Seems PEDF is also released by human amniotic membrane (e.g. ProKera, AMX drops):

Suppression of corneal neovascularization by PEDF release from human amniotic membranes.

http://www.ncbi.nlm.nih.gov/pubmed/15161837

[robster]

Having read all your notes it sounds logical, I don't want to be the voice of doom but I think you are taking a risk with the long term health of your eyes. Be careful.