Blepharitis, Dry Eye, Corneal Abrasions................

[Judee]

First off - how did you get diagnosed with Blepharitis?

He just looked at my eyes with the magnifying equipment that they use and said I have it. I also have skin issues that look like I have rosacea so that might have been a clue. It was over a year ago so I don't remember everything he said. He gave me a lot of information on a lot of things in addition to a lot of instructions on what to do. I'm sorry. I wish I could remember more.

Vernal Keroconjunctivitis

When I look this up, it seems to indicate seasonal conjunctivitis and he did keep saying my allergy reaction was really bad and that if I didn't get that under control I would end up with corneal abrasions like you have.

When I went to him, I thought I just had very bad "pink eye" which I tried different home remedies on including that boric acid solution but I finally made an appointment because I could see my iris raising up off of my conjunctiva and that scared me enough to go in. I think that is what he meant by, "both eyes with limbar and corneal involvement."

I looked up the Eye Wash Bausch and Lomb you used - you said it didn't work long run, so don't bother with it?

It didn't help the issues resolve but it did soothe and moisturize for a while. I think at that time I was trying so many different home remedies that I probably didn't try it more than 2-4 times because the redness wasn't going away, so I went onto the next thing. It's a low price but I know when money is tight, everything adds up so I don't know what to tell you on that. Sorry.

I did try Australian Tea Tree Oil mixed with Johnson's Baby Shampoo - just tiny drop of Tea Tree oil, with 2 drops of baby shampoo in 100 ml water - to wash lids, lashes. The Tea tree oil is very strong so be careful.

Actually I tried the tea tree too. He prescribed something called Avenova spray solution for the Blepharitis and that worked very well and felt really nice but is mega-expensive out of pocket. (I managed to find a website in California that sells it over the counter (much cheaper) to their patients only. I didn't realize that was a criteria and for some reason, the first time, it let me order some but after that it won't accept my orders.)

My insurance won't cover it because as the doctor explained the company originally marketed the product over the counter but then decided to go the prescription route instead because they could make much more that way. Well that messed up how the insurance companies look at the product and consequently coverage. It is over $300 as a prescription.:thumbdown:

There are generic "equivalents" on Amazon. I bought this one but I find it slightly irritating which I didn't get with the Avenova.

So that is when I tried the tea tree. It was too strong but then I mixed it with some almond oil in a ratio of about 1 drop of the tea tree to maybe 2-4 tsps of the almond oil and that was do-able; still a bit strong where you get the warmth of the tea tree but also soothing.

Olopatadine hydrochloride

That was the original allergy drop he prescribed for me but it didn't do anything so I tried the Ketotifen and found it worked better so asked him if I could use that instead.

Thanks so much for the link to Amazon for the German eye drop Hylo-Forte Hyaluronic acid.

I didn't get his permission to use this. I just knew that the tears that he prescribed were not working for me so I was looking for an alternative. I can't do anything with petroleum like the ointments have because of a sensitivity and was looking for something else to keep the moisture in since my eyes feel so dry sometimes it feels like the whole eyeballs are shrinking in the sockets.

How long does the HYLO-FORTE from Amazon last you?

I think when I was using it more often, maybe once or twice per day, it lasted about 1-2 months and that was with me wasting a lot of the product because the dispenser is difficult to work with and I kept missing my eye. I've gotten somewhat better at aiming but one time it took me 14 tries just to get one drop into the eye.

I can't remember the ingredients because I threw the box out but they are minimal--only about 4 ingredients but I suspect I am probably allergic to one of those.

Of course thinking about it, I don't notice the irritation right away. It's just that by the end of the day after using it my eyes are a bit red and the eye lashes feel gloppy and itchy so maybe it is plugging the glands a bit with the coating. On the eyeballs it actually feels very good. Maybe I should just wait an hour and then wash my eyelashes to get it off of those. I still think it is a good product.

Lastly read the guy's thing from cfsremission on Mutaflor - I don't get it, what is Mutaflor?

The Mutaflor is a probiotic that some ME/CFS patients are using that they have found helps them get better. Dr Myhill also recommends it. You can do a search on PR and find some threads that talk about it and what it is doing for people. That's not to say everyone benefits from it but I thought it was interesting that he said it helped his eyes since so many of us deal with these eye issues.

Sorry for the long post. I do hope I've answered all of your questions in a satisfactory way. You can let me know if you have any more questions for me.

 

[Judee]

I am so exhausted - my life has been reduced to trying to sleep, seeing a dr in an emergency, and trying to pay bills. It is a struggle for me to go much longer like this.....................so having this eye thing has just added so much more misery to me.

I understand. He gave me so many things to do and it seemed to take all my energy and focus just to keep up with the protocol. I hope you get some relief. I agree that it doesn't seem like they always know what they are talking about especially since you are getting so many different answers.

 

[starlily88]

I've started using the Dr. Christopher's Eyebright Drops in my eyes (only one or two drops diluted in two eye-cups full of water), and 10 drops a couple of times per day internally. The ten drops can also be diluted but should be held in the mouth for initial absorption into the body before swallowing.

As far as GERD, you may be able to tolerate the drops if you hold them in your mouth and let the liquid absorb. It's only 10 drops. The amount of cayenne in the drops is enough to be hot in the mouth but the actual quantity of cayenne is very small so it might not be a problem for GERD. If you can't tolerate the drops internally then externally should still be beneficial.

Due to the cayenne the eye drops do sting a little so I just open my eyes for a second and roll them, then close them while the sting fades, then repeat.

I've noticed some improvement in my vision, including reduction in floaters, but it's quite early yet and healing with herbs takes time, usually months. Some people also notice a slight worsening of vision at first but then it improves.



Another tip is to rub a drop of organic castor oil into each eyelid, and into the skin under each eye before going to sleep at night. A person in this post on CureZone claims to have healed 80% optic nerve damage in three months using this method. Someone else on the same thread tried it and found improvement as well. I've read elsewhere that castor oil may help glaucoma as well.



I'm not sure if this product would help you, but I've been using Dr. Christopher's Lower Bowel formula and I'm finally getting regular bowel movements after years of having lazy bowels.

It contains a mixture of herbs plus cascara sagrada which induces peristaltic action in the muscles of the colon. Many doctors recommend only taking cascara sagrada for ten days at most because it may lead to a dependency and even weak colon, but Dr. Christopher and other herbalists have used it over the long term to strengthen the colon and regularize bowel movements. They also add other herbs to reduce any chance of griping or other discomfort. As usual, advice is mixed and contrary, so it's something to consider and decide on your own whether to try it.

You can get Dr. Christopher's Lower Bowel in capsules from Swanson, iHerb, or Amazon.com (one bottle of 100 capsules lasts 16 days if a person takes the recommended 6 caps per day). You can also get it in bulk from Amazon (one bag will make about 1000 capsules). The bulk bag is a much better deal than bottles but the powder needs to be encapsulated. This can be done by buying empty 00 size capsules in bulk and then either manually encapsulating the powder, or using a little $20 capsule machine (size 00) that speeds up the encapsulating process.

Thanks so much PatJ for all this excellent information. I now put Dr. Christopher's Eyebright drops on my Amazon list. Thanks for the "Organic Castor Oil, Hexane Free" I found the best one on Amazon already - very interesting what it does for people - so looking forward to ordering this.

Wow, Dr. Christopher's Lower Bowel Formula!! I read reviews on Amazon - no cramps, no diarrhea, so looking forward - first get the 100 caps to see if it works, then will order the bulk, and 00 empty caps!
This will be huge help - since I barely get any food into me now, my normal "exercise" has ceased this year too.

Thanks so much for taking the time to tell me about these great products, so nice of you to take the time.
Happy New Year, Starlily88

 

[starlily88]

He just looked at my eyes with the magnifying equipment that they use and said I have it. I also have skin issues that look like I have rosacea so that might have been a clue. It was over a year ago so I don't remember everything he said. He gave me a lot of information on a lot of things in addition to a lot of instructions on what to do. I'm sorry. I wish I could remember more.



When I look this up, it seems to indicate seasonal conjunctivitis and he did keep saying my allergy reaction was really bad and that if I didn't get that under control I would end up with corneal abrasions like you have.

When I went to him, I thought I just had very bad "pink eye" which I tried different home remedies on including that boric acid solution but I finally made an appointment because I could see my iris raising up off of my conjunctiva and that scared me enough to go in. I think that is what he meant by, "both eyes with limbar and corneal involvement."



It didn't help the issues resolve but it did soothe and moisturize for a while. I think at that time I was trying so many different home remedies that I probably didn't try it more than 2-4 times because the redness wasn't going away, so I went onto the next thing. It's a low price but I know when money is tight, everything adds up so I don't know what to tell you on that. Sorry.



Actually I tried the tea tree too. He prescribed something called Avenova spray solution for the Blepharitis and that worked very well and felt really nice but is mega-expensive out of pocket. (I managed to find a website in California that sells it over the counter (much cheaper) to their patients only. I didn't realize that was a criteria and for some reason, the first time, it let me order some but after that it won't accept my orders.)

My insurance won't cover it because as the doctor explained the company originally marketed the product over the counter but then decided to go the prescription route instead because they could make much more that way. Well that messed up how the insurance companies look at the product and consequently coverage. It is over $300 as a prescription.:thumbdown:

There are generic "equivalents" on Amazon. I bought this one but I find it slightly irritating which I didn't get with the Avenova.

So that is when I tried the tea tree. It was too strong but then I mixed it with some almond oil in a ratio of about 1 drop of the tea tree to maybe 2-4 tsps of the almond oil and that was do-able; still a bit strong where you get the warmth of the tea tree but also soothing.



That was the original allergy drop he prescribed for me but it didn't do anything so I tried the Ketotifen and found it worked better so asked him if I could use that instead.



I didn't get his permission to use this. I just knew that the tears that he prescribed were not working for me so I was looking for an alternative. I can't do anything with petroleum like the ointments have because of a sensitivity and was looking for something else to keep the moisture in since my eyes feel so dry sometimes it feels like the whole eyeballs are shrinking in the sockets.



I think when I was using it more often, maybe once or twice per day, it lasted about 1-2 months and that was with me wasting a lot of the product because the dispenser is difficult to work with and I kept missing my eye. I've gotten somewhat better at aiming but one time it took me 14 tries just to get one drop into the eye.

I can't remember the ingredients because I threw the box out but they are minimal--only about 4 ingredients but I suspect I am probably allergic to one of those.

Of course thinking about it, I don't notice the irritation right away. It's just that by the end of the day after using it my eyes are a bit red and the eye lashes feel gloppy and itchy so maybe it is plugging the glands a bit with the coating. On the eyeballs it actually feels very good. Maybe I should just wait an hour and then wash my eyelashes to get it off of those. I still think it is a good product.



The Mutaflor is a probiotic that some ME/CFS patients are using that they have found helps them get better. Dr Myhill also recommends it. You can do a search on PR and find some threads that talk about it and what it is doing for people. That's not to say everyone benefits from it but I thought it was interesting that he said it helped his eyes since so many of us deal with these eye issues.

Sorry for the long post. I do hope I've answered all of your questions in a satisfactory way. You can let me know if you have any more questions for me.

Judee, thanks for your great reply. It saddens me that my Glaucoma Dr did in fact use lens to see that I had
"allergic conjunctivitis". Then I looked to see when I got blepharitis and conjunctivitis diagnosis it was June 3, 2017! So I have been suffering for One year and Seven months!
This dr is quite frustrating to me because he should have told me this would cause more corneal abrasions, and been serious with me. I saw him weeks after his resident told me I had blepharitis and corneal abrasion.

He saw that I started to grow cataracts maybe 5 years ago - not bad though.
His resident came in to look at my eyes first, and said to me "well I see you have had cataracts for 3 yrs now"
I was globsmacked! I asked him why he didn't tell me?
His answer after treating my Mom with Glaucoma/Cataracts for years, and me for 21 years - "well it hasn't affected your vision, so why mention it until it impacts your vision" I tried so hard to find another Glaucoma Dr but can't.

Wish I could have had the spray you used for blepharitis - my eyelids right now, even with new script, is like being on the Sahara desert - it is so very dry----so uncomfortable. I am going to look at the Amazon spray. I have used the
Occusoft Eye lid scrubs - 30 packs cost $10.00 Walgreens - but they dry my eyelids a lot.

Thanks so much for your help, and now that I know I have been having this for almost 2 years, getting aggravated having to visit the corneal specialists at Hopkins, over and over.
I have another appt Jan 9th for yet another corneal guy, since Dec 11th saw Corneal Fellow.
Then he wants me to come back in March 2019 to see the BEST corneal dr they have at Hopkins.

Gee all of you guys on here have covered every single part of my eyes, and even my bowel problem.
All of you know more than any Hopkins Dr I have seen ................. such a shame, their dependence on Pharma drugs is ridiculous - if I was still working, these prices would not kill me so much.

Thanx so much Starlily88

 

[starlily88]

He just looked at my eyes with the magnifying equipment that they use and said I have it. I also have skin issues that look like I have rosacea so that might have been a clue. It was over a year ago so I don't remember everything he said. He gave me a lot of information on a lot of things in addition to a lot of instructions on what to do. I'm sorry. I wish I could remember more.

Judee, went on Amazon - found the Heyedrate by Love lash/lid cleaner - I wondered if you tried the Occusoft foam one? I have been using the Occusoft eye lid scrubs - it helps me for about 20 minutes.

Also - I saw the Tea Tree Oil bar of soap - (2 bars) - has oils in it, preservative free, a Nurse loves this, uses for her Meibomian Gland dysfunction, blepharitis, Rosacea. People love this - I am ordering the soap because I think it is most important to keep my eyebrows, lids, lashes, and face very clean. I have been using for first time in my life
a generic "dandruff, dry scalp" shampoo.

Last summer in 2017 with first corneal abrasion, conjunctivitis, blepharitis, I noticed my scalp itched all the time, a lot.
My hair is very dry - so I wash it not as often as other people.
Now - I make sure I use the dandruff shampoo very often - so as not to contribute to my eyebrows itching.
Starlily88

 

[Judee]

***Gross picture alert***

I haven't tried the Occusoft foam. It has a lot of ingredients and I am chemical sensitive so whenever possible, I try to keep it simple and look for products with as few ingredients as possible.

The tea tree bars sound interesting though. Are they fragrance free do you know?

I think it's really bad that this doctor has not been keeping you informed. These are serious conditions.

My doctor said when the allergies are like that it forms little bumps like this picture (vernal conjunctivitis):


And he said those can easily scratch against the cornea and cause the abrasion.

I may try the heyedrate again but add some sterile purified water to it in order to dilute it a bit.

My scalp does get itchy. I had very bad seborrheic dermatitis when I was a teenager (quarter and nickel sized flakes) and the only thing that worked for me then was a shampoo with zinc pyrithione but it is very difficult now to find a shampoo without any fragrance that uses that.
(Edit: Actually I just found one on Amazon. Wonder how long this has been out.)

Thankfully, I am not experiencing it now to that degree at all. Some of the itching for me might also be because I am not able to wash my hair as often.

When I had some in stock, I used to put a drop of tea tree oil in my shampoo and then wash a second time without the tea tree to get the stickiness out of my hair but I've run out now and haven't ordered more.

Well, keep me up-to-date with your situation as you are able. I hope you get some relief soon.

 

[starlily88]

***Gross picture alert***

I haven't tried the Occusoft foam. It has a lot of ingredients and I am chemical sensitive so whenever possible, I try to keep it simple and look for products with as few ingredients as possible.

The tea tree bars sound interesting though. Are they fragrance free do you know?

I think it's really bad that this doctor has not been keeping you informed. These are serious conditions.

My doctor said when the allergies are like that it forms little bumps like this picture (vernal conjunctivitis):
View attachment 30668

And he said those can easily scratch against the cornea and cause the abrasion.

I may try the heyedrate again but add some sterile purified water to it in order to dilute it a bit.

My scalp does get itchy. I had very bad seborrheic dermatitis when I was a teenager (quarter and nickel sized flakes) and the only thing that worked for me then was a shampoo with zinc pyrithione but it is very difficult now to find a shampoo without any fragrance that uses that.
(Edit: Actually I just found one on Amazon. Wonder how long this has been out.)

Thankfully, I am not experiencing it now to that degree at all. Some of the itching for me might also be because I am not able to wash my hair as often.

When I had some in stock, I used to put a drop of tea tree oil in my shampoo and then wash a second time without the tea tree to get the stickiness out of my hair but I've run out now and haven't ordered more.

Well, keep me up-to-date with your situation as you are able. I hope you get some relief soon.

The Tea Tree bar soaps on Amazon only contain green tea, organic olive oil, organic coconut oil, tea tree oil - no added fragrance listed.
Yes I get very upset that he doesn't tell me anything, he is very quiet guy - but head Glaucoma guy at Hopkins people don't like at all so stuck right now.
.
Saw the awful pics - I don't have any of these on my eyelids - no swelling. But my Meibomian Glands are big, swelled, and this make the itch awful.
I just bought the Target brand of Dry/Dandruff shampoo - it works fine for me.

I also can't wash hair often due to fatigue. Now I am trying to wash once/week.
It seems like I have skin condition, like psorias or ecxema and my neurapothy causing this.

If you have a Trader Joe's where you live, they carry pure tea Tree Oil for about 8 bucks.
This is probably driven by my autoimmine dysfunction - and with the thyroid disease, makes the skin on eyes much dryer, plus past Meno pause and can't do Hormone replacement.

Thanks for all your great suggestions - will buy the Heyedrate for sure.
Starlily88

 

[PatJ]

no diarrhea

It is possible to get diarrhea if you take too much so it can take some experimentation to find the right dose. The right dose for each person may change over time as well. The 6 caps per day listed on the bottle is just a suggested starting dose. Some people need less, some more, and some need a lot more, especially in the beginning if they've had constipation over a long period of time.

 

[Judee]

will buy the Heyedrate for sure.

I would say to just be cautious with it because it can be irritating even just on the skin of the eyelid.

 

[starlily88]

It is possible to get diarrhea if you take too much so it can take some experimentation to find the right dose. The right dose for each person may change over time as well. The 6 caps per day listed on the bottle is just a suggested starting dose. Some people need less, some more, and some need a lot more, especially in the beginning if they've had constipation over a long period of time.

Thanks a lot PatJ. Yes I won't do 6 caps! I start out very low, my body over reacts to any drug I take, as I am sure most of us do on here. Starlily

 

[starlily88]

I would say to just be cautious with it because it can be irritating even just on the skin of the eyelid.

Judee - seems l will rather do Hylo-Forte first= tho I hesitate even on this one, due to fact I can't open any cold meds with the "push down and turn" child proof tops ever. Thanks for the warning. Starlily88

 

[Gondwanaland]

Drops with hyaluronic acid caused me photophobia and stye.

 

[starlily88]

Drops with hyaluronic acid caused me photophobia and stye.

Thanks for warning me - that is awful. Starlily88

 

[starlily88]

@starlily88
It is nice to see you again, here.
AND, thank you for ALL of those details.
I will want to read them again, and take some notes, as I have had numerous eye pain and difficulties, as well,
as yet, not sufficiently well addressed for comfort.

I cant think of any idea for you at this moment, but I might be able to , later on, when I can get back to focusing on your post, and this issue.
Thanks, very much, for sharing about this!

Hello Shoshana!! Been having a bad time this year. The eye thing started 1 year 7 months ago.
I am pretty frustrated because June 2017 was when I got blepharitis, corneal abrasions.

It is so hard this year to go to brand new GI guy, brand new Hematologist, etc. I lost every single dr I had except for my Endocrinologist. There is a shortage of Internal Medicine drs where I live.
The drs I know have gone "Concierge" - so one has to pay up to $1800/year to see them.

Everyone on here has helped me tremendously with all the information/experience they have had, and this has
given me hope for the very first time this year!!

Wishing you a Happy New Year Starlily88

 

[starlily88]

Personally, I found that stinging pain in cornea reflects low glutathione, sulfite sensitivity and some deficiencies:

B1 (prefer the fat-soluble forms like Benfo or Sulbuthiamine)
B2
Vit A (Cod Liver Oil is fine)
Molybdenum (I don't tolerate Moly supplements, so I get it from food)
High lysine foods

No prescription drops or ointments helped me.

Thanks for the Molybdenum food list - I love black beans, Garbanzo beans, etc.

 

[TenuousGrip]

One of the absolute best things I've done to keep my "ocular surface" problems relatively at bay was keeping the indoor humidity pretty high.

We have a whole-house humidifier on our furnace (maintaining about 40-45% RH) and I run a relatively small separate humidifier in the master bedroom, by my bedside (maintaining about 55-60% RH in the bedroom at night).

I'm meticulous about maintaining both humidifiers and have had zero evidence of any kind of mold growth.

If I let the bedroom humidity drop much below about 40% I start getting the symptoms and RCEs (Recurrent Corneal Erosion) again.

Indoor humidity can get really low during the heating season in places with harsh winters.

Great resource: https://www.dryeyezone.com/

 

[brenda]

I suffered corneal erosions for a couple of years. You have my deepest sympathy I remember some nights I was too scared to go to sleep.

The thing that helped me the most was a dampened silk eye mask.

Eventually the erosions stopped when I changed my diet especially gluten free. I think inflammation went down and maybe acidity.

 

[StarChild56]

I'm sorry I wasn't able to read all the posts. I have blepharitis in both eyes, dry eye and Meibomian gland dysfunction.

I don't have as much/severe problems with my eyes, but they were very dry, gritty and sore all the time. I use Heydrate and love it. I use it twice a day. I wash my eyes and eye brows, paying particular attention to the lash line, 2x a day with Dr. Bronner's soap (I read something that made me not want to use baby shampoo but forget why). I pat dry with tissues (never using a towel, as you would have to use a different spot for each eye and not reuse). Then I spray my eyebrows and eyelids with a few sprays of the heydrate, and get it in the inner corner and open my lids till I can feel the solution go over the entire part of my actual eye not just the outside.

My eyebrows had gotten very dry and flaky.

I have had a huge relief in symptoms - do not wake up with crusted eyes; do not feel sore and gritty almost every. I've been using it a couple months.

A one month supply on amazon is about $19 - but I think I use maybe twice as many sprays as they say. I was able to buy a 4 oz bottle (it is a spray, it is easy to use) which was cheaper though I did not find that available with my cursory search.

So in case it is helpful, here is the link:
https://www.amazon.com/Blepharitis-...=UTF8&qid=1546321648&sr=8-1&keywords=Heydrate

I hope you get relief very soon

Edited to add:
I had a stye and used the Heydrate one night - it was gone the next morning. I was impressed. I got my first bottle the day after my stye appeared, and used it that night that it arrived.

 

[Gondwanaland]

Thanks for the Molybdenum food list - I love black beans, Garbanzo beans, etc.

I found out the hard way that too much of Garbanzo beans will cause Fibromyalgia.

I just remebered that my eye healed in 24h once I started drinking milk from a nearby farm. Milk from the supermarket doesen't have that power. I think it increased my glutathione. Unfortunately I am lactose intolerant, and milk isn't good for my hormonal problems, so I can't always go this route when my eye hurts again.

Borage oil also felt very healing, but it blocked my thyroid and I crashed badly.

 

[perchance dreamer]

I have dry eyes and find that no other eye drop works as well as Genteal Severe. This is a grossly inflated price on Amazon, but the twin pack of Genteal Severe is generally available at Walgreens and major supermarkets for around $20.

https://www.amazon.com/GenTeal-Lubr...363922&sr=1-5&keywords=genteal+severe+eye+gel

My eye doctor said she keeps hers in the refrigerator, not because it's necessary for storage, but because it feels that much more refreshing.