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

starlily88

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Starting in Jan 2018 two months, eyelids itched terribly.
Had had corneal abrasion Sept/Oct 2017 from eyelid opening from sleep, tearing whole cornea, did erythomycin ointment.......
Saw at Wilmer Eye Clinic, Director of Dry Eye there. Said "it's Blepharitis"
Stuck sharp object in corners of my eyes, tears came. She said "No dry eye, tears fine"


Did Tobradex, steroid and anti-biotic ointment on lids, did eye bead mask heated in microwave,
did Systane drops. Took 3 months to even feel a bit normal.

Since then, got Corneal Abrasion in other eye this Dec 3, 2018.
Whole month feel awful every single moment.

Told by Resident in practice - I have Anterior Basement Membrane Dystrophy (ABMD), common with Blepharitis, - it is corneal disease where one layer of epithelium over cornea not right, etc.

In last year been told - it's Blepharitis, It's ABMD corneal disease. No, it's Dry Eyes (told that Dec 11, 2108).
Told to use RESTASIS - cost so very high - It is $37.00 using insurance - with 30 vials of sterile dry eye solution.
Told to use MURO 128 - $20 bucks with insurance - put inside eye rim before sleep.

Today saw another Corneal Specialist - said I am "asymptomatic"
Then calls in an eye drop for itching, then tiny tiny tiny little ointment that costs $101.96 with insurance!
So he doesn't see the dry eye, the enlarged Meibolime Glands?

Then I look at old forums on here - Some use Borax with water boiling mix - for eyewash.

All these very "big" known Corneal guys seem to all disagree.
Then I think - this is part of ME -

Please tell me all the cures all of you have been doing for dry eyelids and very itchy eyes/eyelids, dry eyes.
I have stopped doing Netflix on my computer - it makes my eyes dry - unless I look away for 20 seconds, after 20 minutes on computer. Should only watch Netflix on Flat Screen, don't have one..

Happy New Year to all you people on here, only place you know how hard life is with ME/CFS.
 

BadBadBear

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I had severe dry eye feelings when my body got acidic. I had some unknown gap acidosis early in the course of my illness that caused it. I think my tears must have been acidic and irritating to my eyes! I developed a pterygium from the acid.

For me the ultimate cure ended up being daily bicarb to get out of acidosis.

I even was tested for Sjogrens at that time, my eyes felt soooo bad.

Ymmv!
 

ljimbo423

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@starlily88 - I have a lot of problems with my eyes but not to the extent that you have. My eyes are often dry, bloodshot and feel like they have dirt in them.

I sometimes wake up in the middle of the night with one eye that feels like somebody had ground dirt in it. It's very painful and makes my eye water like crazy.

I have OTC eye drops that do a pretty good job of relieving the pain. Just Visine and sterile water drops. I hope you find something that gives you some decent relief!:)
 

Shoshana

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@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!
 

Judee

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Yes, I think it is a part of our disease, unfortunately.

I've had dry eyes for the last few years and it became a real problem last year when I got diagnosed with the following:

• Blepharitis of both eyes with rosacea
• Vernal keratoconjunctivitis of both eyes with limbar and corneal involvement
• Meibomian gland disease, unspecified laterality

I was put on a bunch of meds along with the hot packs for 20 minutes every night. I had tried a store bought boric solution similar to this one before I finally had to go to a doctor to find out what was going on. It did soothe my eyes but didn't solve the problems above.

I use Ketotifen drops now because he said the allergy inflammation looked very bad and even though I was told to wean off the others he wanted me to keep using something for the allergies 2-3x per day.

"Tears" actually dry my eyes out more o_O so I tried a drop from Europe that has hyaluronic acid in it instead. That initially soothes and kinda coats the eye but later my eyes feel more itchy and irritated so I only use that along with the Ketotifen if my eyes are unbearably dry. (Here is that European Drop if you want to look at it. The bottle is very frustrating to use though.)

Also when the doctor told me to use warm compresses, I just assumed that meant wet wash
clothes. I've since tried that and the microwave pads and think the wash clothes work better because they actually do lend moisture.

I take a clean wash cloth and wet it with water from our purified tap, squeeze out the excess, and then microwave the cloth on a clean saucer for about 25 seconds. (You do have to let it cool some, hence the saucer, but I like to do it this way because I feel like I'm sterilizing the water/wash cloth too.) Then I lay down with it pressing it onto my eyes gently so it touches the entire length of the eye lash for 10-20 minutes. Don't press hard though or you'll see "stars" when you finish.

One more thought...just last night I was reading from cfsremission.com and he made the comment that when he tried Mutaflor his, "Dry Eye and Dry Mouth disappeared after 4 days." (Mutaflor is something I've been wanting to try for some time so will be ordering that after the first of the year.)

Here is the link if you want to read the page yourself.

I'm glad to see your again. I also had been wondering how you were doing as I hadn't seen you on PR for a while. Sorry you are going through so much though. Hope some of these comments help.
 
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Asklipia

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I had the same problem as @starlily88 for years. In the left eye.
Eventually I moved house next to an ophthalmologist who noticed and prescribed Tobradex a drop morning and evening for 15 days, then 15 days imperatively NO Tobradex. This for 6 months. (I had been prescribed Tobradex before but only 5 days at a time but it did not help). Also at the same time I used WetOnes wipes three times a day over the closed eye and eyebrow, for about two months.
I felt very much relief, but after a couple of months, the problem came back, but less intense, so I started again. It stopped, then came back less intense.
During all that time I was on high Thiamine supplementation. Because these eye problems are a sign of Thiamine deficiency.

I think now I am free of the problem (about two and a half years into this treatment, and the problem had lasted for years). No blepharitis etc for the last 5 months. What amazed me was how long it took, more than two years, to get rid of the consequences of Thiamine deficiency.
If the problem comes back I am sure it will be much less than before and I know what to do.
Be well!
Asklipia
 

starlily88

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@starlily88 - I have a lot of problems with my eyes but not to the extent that you have. My eyes are often dry, bloodshot and feel like they have dirt in them.

I sometimes wake up in the middle of the night with one eye that feels like somebody had ground dirt in it. It's very painful and makes my eye water like crazy.

I have OTC eye drops that do a pretty good job of relieving the pain. Just Visine and sterile water drops. I hope you find something that gives you some decent relief!:)
Thanks for everyone's excellent replies to me.
To Lijimbo423-
I did find that using an Ointment before sleep keeps my eyes in moisture heaven.
Years ago my dry eye Optician made me use GenTeal Night Time Ointment (Walmart).

Sounds like you are doing fine with just Visine.
Thanks for your help and support, Starlily88
 

starlily88

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I use lubricating eye ointment multiple times a day as well as before bed and during the night if I wake up.
Thanks AndyPandy.
I use Systane Balance- a lubricant restorative eye drop 3/4 times/day.
I use Muro 128 by Bausch and Lomb - only 1/8 ounce/3.5 gram ointment tube - this is sodium chloride hypertonicity ophthalmic ointment - which is for corneal edema. Supposed to be used 2 X/day - lasts for couple weeks if I am lucky.

I have been using Bausch and Lomb Erythomycin Ointment - first for each corneal abrasion. Now I put a bit
onto left eye inner top corner - my Mebolium gland is so swelled up, it is very painful and itchy.

I use Zaditor (name brand) for Eye Itch Relief - made of Ketotifen Fumirate. This is AntiHistamine Eye drops.
Since this KETOTIFEN Fumirate/AntiHistamine eye drops worked for me last fall 2017 for allergy eyes but not now -
was given a Prescription of this.

Called PAZEO 0.7% Solution drops which sells for $212.00!!!
I got to pay $37.00 with my insurance, lucky me. This is working - but will last maybe 20 days if lucky.

For my Blepharitis - or I call it my Itchy Eyelids, which are so severe I can't stop scratching, can't think, can't watch movie - it is like torture.
For this itchy eyelid - Nothing worked.

He gave me a prescription ointment called LOTEMAX in the states
This is made of Loteprednol Etabonate 5 mg (0.5%) with White Petrolatum, Mineral Oil.
BTW, I did ask this Dr "how expensive is this? All eye stuff too expensive for me" His reply "not much at all"

Yep, the price is $310.00 for the tiniest tube I have ever seen!!
I got to pay $105.81 US dollars. It lasts for maybe 5 days.
I almost did not pay, but I am so so miserable.

I did mix baby shampoo, sterile water, and 100% Australian Tea Tree Oil (Trader Joe's) - used this with cotton balls to clean lids and eyelashes. Only did one drop Tea Tree Oil - still burns, but for me doesn't work. This does work for lots of people with Blepharitis, keeps eyelids clean of bacteria, mites, eyelash gunk.

Happy New Year - I watch your beautiful New Year Fireworks 1st. Isn't New Zealand/Australia first in world for New Years? Thanks Starlily88
 

starlily88

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To AndyPandy, I just spent one hour writing you a reply, but it disappeared! I think I am so tired, I did not hit "Post Reply" but must have hit Enter instead.
I do use Eye ointment before sleep, and Systane Lubricating drops many times day/nite.
I love your New Year's fireworks at the Opera House, watch every year!! Starlily88
 

starlily88

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I had severe dry eye feelings when my body got acidic. I had some unknown gap acidosis early in the course of my illness that caused it. I think my tears must have been acidic and irritating to my eyes! I developed a pterygium from the acid.

For me the ultimate cure ended up being daily bicarb to get out of acidosis.

I even was tested for Sjogrens at that time, my eyes felt soooo bad.

Ymmv!
To BadBear - thanks.

I now take Prilosec or Nexiuum 40 mg 2 times/day.
I got uncommon thyroid disease March 21, 2018.
This proceeded my Blepharitis by 6 weeks early 2018 - it was severe, seen emergency at Hopkins Wilmer Eye.

Put on Tobradex, Systane, Microwaved cloths/eye masks, etc. It took me over 3 months to even feel a bit better.
I think the humidity and heat this past summer helped me a lot, then bam, it came on again.
This time nothing worked at all. Then had 2nd corneal abrasion, a corneal disease, along with blepharitis.

Happy New Year, and may this year bring some good healthier days Starlily88
 

starlily88

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Dr. Christopher's Herbal Eyebright formula (tincture) might be helpful for you. It's available from Vitacost or Swanson

This site has more information:
http://www.herballegacy.com/Herbal_Eyebright.html

http://www.herballegacy.com/Eye_Ailments.html
To PatJ, thanks for the reply. I read the first one on Eyebright.
Have you ever done this one?
I looked it up on VitaCost - very interesting - Dr. Christopher's Herbal Eyebright.
I was a tiny bit hesitant with the Cayenne pepper in it - but it seems to work for everyone so I will try it out!

Looked at the Dr. Chris Eyebright caps - that I will have to pass on due to cayenne - in middle of severe GERD.
But did see Nature's Way Bilberry which seems to help everyone's nite vision and eye health.

Thanks so much for your invaluable help in this.
Starlily88
 

starlily88

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Dr. Christopher's Herbal Eyebright formula (tincture) might be helpful for you. It's available from Vitacost or Swanson

This site has more information:
http://www.herballegacy.com/Herbal_Eyebright.html

http://www.herballegacy.com/Eye_Ailments.html
OK read 2nd URL here- thanks. My Mom and her family had Glaucoma, so all this is scaring me, since the Dr looked at my optic nerve, and saw in mid point of nerve, an enlargement of the lumen, which scared me to death, even though he said this is not Glaucoma, but he has to watch this.
Meantime, my real Glaucoma specialist just saw me couple months ago, and never saw anything wrong, but magically told me I didn't need glasses anymore - 20/20 in one eye, 20/25 in other.
Now with all this corneal, eyelid, etc happening, my vision was tested on Thursday - I could barely read the 2nd line.
So my vision is being affected by whatever I have, thanks again Starlily88
 

starlily88

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I had the same problem as @starlily88 for years. In the left eye.
Eventually I moved house next to an ophthalmologist who noticed and prescribed Tobradex a drop morning and evening for 15 days, then 15 days imperatively NO Tobradex. This for 6 months. (I had been prescribed Tobradex before but only 5 days at a time but it did not help). Also at the same time I used WetOnes wipes three times a day over the closed eye and eyebrow, for about two months.
I felt very much relief, but after a couple of months, the problem came back, but less intense, so I started again. It stopped, then came back less intense.
During all that time I was on high Thiamine supplementation. Because these eye problems are a sign of Thiamine deficiency.

I think now I am free of the problem (about two and a half years into this treatment, and the problem had lasted for years). No blepharitis etc for the last 5 months. What amazed me was how long it took, more than two years, to get rid of the consequences of Thiamine deficiency.
If the problem comes back I am sure it will be much less than before and I know what to do.
Be well!
Asklipia
Thanks so much for your reply Asklipia. Boy lucky you moving next door to the opthalmologist.
I too started on Tobradex - but the Ointment back in February 2018.
I was told to put the ointment on my EyeLids 2X/day for 2 weeks, then Once/Day with what I had left.
Like you - I was only allowed to use it for little over 2 weeks - but mine was only externally on eyelids for Blepharitis.

My Dr. is Head of Dry Eye Clinic at Hopkins - and she never gave me Tobardex drops.
I was very surprised she didn't want me to be on it more - because it barely helped me.
Since I had one refill left - I got desperate in August 2018, and renewed it- lasted little over 2 weeks.
I never did get better this whole time- even with hot compression and Systane drops.

I also found out about Wet Ones from a Forum on here - told that the Benzalkonium chloride 0.1% anti-bacterial is
excellent to use on eyelids and eyebrows. Funny you are first person to mention eyebrows.
My eyebrows itch so much - for last 1 1/2 years. When I tell a Dr they think I am crazy.
I used Dandruff shampoo on them the other day- they itch as much as my eyelids do.
So I went to Walmart other day - bought the Wet Ones. Wanted the Sensitive Wet Ones but they don't have
the Benzalkonium in it.

First off - you are the first person to tell me about Thiamine deficiency.
Thank you for that. Also - how much do you take - how many mg?
Where do you buy it, do you get certain brand?

Also - like you I am very disappointed that nothing I do helps me at all. I have not had one month, or one
week without suffering. I have seen forums where people have this for 5 years, 15 years.
What gets me is that I have seen many "top" doctors in dry eyes, blepharitis, corneal problems.

None of them say remotely the same thing. One says it is this, another says it is something else.

What gets me is - Not one Doctor tests for Anterior Blepharitis or Posterior Blepharitis.
No one tests to see if you have Mites on eyelids. No one does test for dry eyes (there are 3 tests).
No one has even tested my corneas. And no one has tested or examined my Meibomian Gland to see if
I even have Meibomian Gland dysfunction.

If one has MGD (Meibomian gland dysfunction) there are things to help it heal.

So out of everything you did - do you think taking Thiamine was the thing that helped the most?
Also - not one dr will give me script for Tobradex so I am surprised they let you do it off/on for 6 months.

Tobradex supposedly can raise your eye pressure (I have family history Glaucoma) ,and it also can give one
a virus - supposedly. My Corneal Fellow at Hopkins refused to give me Tobradex - I asked him 3 times why?
He would not tell me like it was a big secret. Tobradex was the one thing that gave me horrible itching relief, although it was temporary, and only lasted a few hours.

My Glaucoma dr has Blepharitis - he told me when I saw him Fall 2017 for my exam.
He takes Doxycycline every single day. I read a JAMA study on how Doxy helps blepharitis and cornea.
I asked him for script - he said NO.
I don't know why a well educated Glaucoma Dr who has seen me 2X/year for last 21 years won't let me
take what he is taking - for same disease.

So I got script for Doxycycline from Dr at Hopkins - but he only gave me 2 weeks supply.
My Glaucoma Dr takes it every single day for years - so you know it helps.

Sorry for being so long. This is very frustrating that no one tests me - the tests are pretty non-invasive, and no one agrees on treatment - and nothing works anyway.
So if Thiamine is the answer - don't you think it is shocking that not one doctor knows this?

Thanks Starlily88
 

Asklipia

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@starlily88
I don't think I got cured by Tobradex. It helped enormously not to feel pain and relieved inflammation.
I don't think I would need it anymore.
The Wet Ones helped too for the same reason, making sure I had no infection.
The root of the problem is cured by curing Thiamine Deficiency, but this takes a long time, or at least it did for me.
I took two years to cure it completely (I am not sure it will not come back but it hasn't for the last 5 months).
My neighbour ophthalmologist was very surprised, he told me more and more people had this problem, that no-one was ever cured by the Tobradex but at least they could half of the time lead a normal life.
I told him about the Thiamine, but because in my country this lipophilic thiamine I use is not on the list of prescription medicines, he cannot prescribe it to his patients. He could prescribe repeated Thiamine injections but his patients are reluctant.
Anyway here are a few links :
https://forums.phoenixrising.me/index.php?threads/high-dose-vitamin-b1-thiamine.34387/
https://www.hormonesmatter.com/solving-medically-unsolvable-thiamine-oxalates/
I have been using lipophilic thiamine instead of normal thiamine (hcl) because it bypasses some of the problems of thiamine absorption.
At the moment I only use Allithiamine 50 mg + Benfotiamine 200 mg + magnesium (ionic). If I take less for a few days I feel something is wrong. I have been taking up to 600 mg of different lipothiamines combined.
https://forums.phoenixrising.me/ind...ent-story-focus-on-thiamine-deficiency.24059/
I cannot use the Lipothiamine Dr Lonsdale recommends because it has ALA and because of past mercury problems I cannot take it yet. Once a week 50 mg maximum.
My eyebrows have stopped itching, but they are very sparse now, and haven't grown back. Yet, should I say? I still have hope. Please keep me informed if you get results.
Good luck
Asklipia
 
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starlily88

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Yes, I think it is a part of our disease, unfortunately.

I've had dry eyes for the last few years and it became a real problem last year when I got diagnosed with the following:

• Blepharitis of both eyes with rosacea
• Vernal keratoconjunctivitis of both eyes with limbar and corneal involvement
• Meibomian gland disease, unspecified laterality

I was put on a bunch of meds along with the hot packs for 20 minutes every night. I had tried a store bought boric solution similar to this one before I finally had to go to a doctor to find out what was going on. It did soothe my eyes but didn't solve the problems above.

I use Ketotifen drops now because he said the allergy inflammation looked very bad and even though I was told to wean off the others he wanted me to keep using something for the allergies 2-3x per day.

"Tears" actually dry my eyes out more o_O so I tried a drop from Europe that has hyaluronic acid in it instead. That initially soothes and kinda coats the eye but later my eyes feel more itchy and irritated so I only use that along with the Ketotifen if my eyes are unbearably dry. (Here is that European Drop if you want to look at it. The bottle is very frustrating to use though.)

Also when the doctor told me to use warm compresses, I just assumed that meant wet wash
clothes. I've since tried that and the microwave pads and think the wash clothes work better because they actually do lend moisture.

I take a clean wash cloth and wet it with water from our purified tap, squeeze out the excess, and then microwave the cloth on a clean saucer for about 25 seconds. (You do have to let it cool some, hence the saucer, but I like to do it this way because I feel like I'm sterilizing the water/wash cloth too.) Then I lay down with it pressing it onto my eyes gently so it touches the entire length of the eye lash for 10-20 minutes. Don't press hard though or you'll see "stars" when you finish.

One more thought...just last night I was reading from cfsremission.com and he made the comment that when he tried Mutaflor his, "Dry Eye and Dry Mouth disappeared after 4 days." (Mutaflor is something I've been wanting to try for some time so will be ordering that after the first of the year.)

Here is the link if you want to read the page yourself.

I'm glad to see your again. I also had been wondering how you were doing as I hadn't seen you on PR for a while. Sorry you are going through so much though. Hope some of these comments help.
Judee thanks so much for all this information. Just finished researching what you replied!!
OK hope you don't mind questions because I have a lot!

I have been going thru this mess of itchy/pain - it is overpowering my life now, it seems to get worse and worse.
First off - how did you get diagnosed with Blepharitis?
I was told with my first corneal abrasion summer 2017 - the Resident who I know quite well told me - because I assume she "saw it"? Then I had my exam with her boss - my Glaucoma dr. He told me "No, you don't have
Blepharitis, you have allergic conjunctivitis" He knew his resident had told me I had blepharitis, and I do have it.

I was told to start doing Ketotifen Fumarate sold in States as "Zaditor" (Walgreens).
I now buy it at Walmart - Walmart brand Equate - Eye Itch Relief - AntiHistamine eye drops.
They did help back then, but not now at all.

So I was told last year I had "Conjunctivitis" in both eyes like you.
Unlike you - not told I had "Vernal Keroconjunctivitis with Limbar and Corneal Involvement" - can you explain what the Vernal Kero......... means, and the Limbar and corneal involvement?
I was told that with Blepharitis - it often affects the cornea - so the Director of Dry Eye Clinic down at
Hopkins Wilmer Eye Institute saw me early Feb 2018 with unending itching/pain - she told me I had to see
her every 6 months - to keep watch on my corneas.

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?

December 2018 has been seeing my Glaucoma Doc's Residents - meeting late at Kreiger Eye - to find I have yet another corneal abrasion - this is when I knew I had much more than Blepharitis.
Of course not one dr at Hopkins or Kreiger told me I had "Anterior Basement Membrane Dystrophy" which is a
fancy word for corneal problem - that often goes with Blepharitis.

It is when one of the epithelium layers protecting the cornea is not in good shape so it doesn't protect one's cornea very well - causing problems to your eyes, vision, itching, etc.
Have no idea why all these very bright drs at Hopkins and Kreiger which is part of Hopkins decided to never tell
me that I have ABMD or EMD, whatever - I was shocked when I had to call Resident on call 2 weeks ago due to vision loss - my bad left eye - looked like I had sheet over it - everything went white for 5 hours.

Since my Antihistamine drops don't work, and my eyes are so itchy in each corner, and left bottom eyelashes,
this new Hopkins Corneal guy gave me 2 new scripts.
One is Prescription Pazeo- this has Olopatadine hydrochloride, boric acid, interestingly also Benzalkonium chloride which I read is the ingredient in WET ONES from Walmart to disinfect hands. Many use this Benza stuff to clean eyelids/eyelashes for Blepharitis.
Anyway it is pretty expensive at $212.00 - paid less with insurance but it is tiny tiny bottle.

Nothing, and I mean nothing is stopping eyelid itching. SO I bought the Wet Ones from Walmart yesterday.
Again this new Dr gave me Prescription - to put on eyelids - the MOST expensive drug I bought in my lifetime.
This ointment is called Lotemax 0.5% Ointment - has Loteprednol Etabonate, with mineral oil, petroleum.
This costs $310.00!!! Do you believe it? I almost didn't get it, but I am so so desperate after going thru this
for 1 1/2 years, just getting worse. I paid $106.00 with insurance - but can't buy it again.
This month I spent more on eye stuff than I have any month in my life!!

Thanks so much for the link to Amazon for the German eye drop Hylo-Forte Hyaluronic acid. I read the reviews.
Everyone loves these so much - even those with Meibomian Gland dysfunction!!
Everyone hates the delivery system. Also they hate the price.

I was started on Restasis - which is expensive. you get 30 vials - I was to pay $120.00 for 3 month supply.
How long does the HYLO-FORTE from Amazon last you? I know you don't use it much but how long do you
think I could use it - if doing it 2X/day? It costs $24.00 - so it would be cheaper than Restasis.
But my left thumb is useless due to new joint (arthritic) so I can never open anything.

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.

You said using the German Hylo-Forte gets your eyes more irritated and more itchy, did your doctor even approve it?
I saw that there is a Hylo-Tear and a Hylo-Care (has Hyaluronic Acid) but helps the cornea. Wonder if they are as irritating.

Lastly read the guy's thing from cfsremission on Mutaflor - I don't get it, what is Mutaflor? All I got was he does
Niacine/Nadh which I can't do.

Hope you read the Post here on taking Thiamine - that is something I ever knew, so happy to find out.

Reason I haven't been on here is sort of personal if you want to PM me. But I have had the worst year of my life so far this year - starting in Jan 2018 with Blepharitis, etc, then in March 2018 getting rare thyroid disease.
By May 2018 I pretty much knew I was not going to make it - I could not even stand up without passing out.
I had dehydration, no iron (just had iron infusion last week) - and the thyroid disease makes my Gastroparesis 10 times worse - so I stopped eating - basically I could eat a few crackers and water all day, that is it.

I had everything in my ME/CFS so much worse - even things I never had before I got.
Every single step I took - was torture for me. My 10 toes hurt 24/7, my hips hurt so much, my feet could barely walk without so much pain, -= and when I had the audacity to write to my Endocrinologist of 25 years - he would claim nothing I had wrong had anything to do with this strange thyroid thing - which he has only seen 45 cases in his whole medical career (he is 60).

Even when I got severe GERD - I had to go to Hopkins Endocrinologist - who also has little experience with what I have. He thought and said "your thyroid slowed your stomach down to nothing, and your bowels, and since you have Gastroparesis and Colonic inertia - you are down to nothing so anything you eat, just a little broth will come up"
I thought after a week of this GERD that I was dying - I have never experienced what I have this year.

And I still have these symptoms - it has been 9 months of pure H-ll on earth for me.
This disease supposedly runs 18 months but no one knows - and this internist told me it won't ever go away.
I know that I can't live with this much longer.

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.

Every Dr I go to for my eyes - says - well take this, and come back in 8 weeks, or 3 weeks or 3 months, like I am going to have better itching or better vision - and nothing works.
I think not one Dr in the US knows one thing about these diseases, and now this guy saw an enlargement in my
optic nerve - he says"well at least you don't have Macular degeneration" I got so freaked out.

Starlily88
 

PatJ

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Have you ever done this one?
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.

now this guy saw an enlargement in my optic nerve
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.

Gastroparesis and Colonic inertia
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.
 

Gondwanaland

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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.