26 year old with MGD due to eyelid inflammation

[DryinNYC]

Hi all-

I'm a 26 year old guy from Atlanta, Georgia. Right when this all struck, I was moving to NYC and had gotten into my dream PhD program. Unfortunately my eyes got so bone dry that I had to move back home with my parents and quit my job, so despite my username I'm actually in ATL!

I'll try to keep it brief, but here is my story:

I took Accutane during my Junior year of high school (2007-2008). Toward the end of my senior year, I started to become contact lens intolerant. I reckon because of Accutane, I had some mild MGD issues and mild dry eye. I switched to glasses and never had any problems. However, I wanted to play sports in college, so I actually decided to have LASIK done in December of 2010. Post LASIK, I had no issues at all, luckily. (Looking back, I would never have done it again, even with my good outcome- just too risky!)

Fast forward to this past December 2016. I had a big outbreak of eczema in my arm creases (always got it there throughout childhood- no big deal). However this time it appeared on my upper eyelids. The arm crease irritation went away as usual, but the eyelid inflammation never truly went away. It wasn't super noticeable so I just didn't bother with it. I suppose now that this is some sort of rosacea or skin issue.

I began to feel dryness in March 2017 and it got progressively worse. I first was able to see the doctor in early May and my schirmer scores were 7R and 4L. When I was tested again in August, they were 4R and 3L. I don't have visible gland plugging, but rather inflammation deeper in the eyelids that is causing poor quality oil. I reckon over time the bad oil disrupted my tear film, causing dryness and inflammation, which caused my schirmer scores to drop.

I still haven't found a local doctor that I truly like, but I was able to see Dr Latkany in NYC. He suggested I take better care of my allergies- I'm thinking that when allergy season hit, that's what tipped the scale and caused the snowballing dryness. I also want to give a big shoutout to Scott Kornfeld at Woodbury Optical. When I was in New York, he made me a pair of custom moisture chamber glasses that look amazing!!

My current regimen is:

Xiidra 2x day
Pazeo 1x day
100mg doxy 1x day (6 week prescription, currently starting week 5)
Cold compresses
Moisture chamber glasses

I've had very mild improvement. Nothing to write home about, and certainly nowhere close to comfortable, but Pazeo/doxy has helped somewhat.

I've tried in the past:
- Warm compresses (these just made the inflammation worse)
- Omega 3 supplements
- PRP eye drops
- I had one session of IPL but I decided to stop because it only treats the lower eyelids, and my big problem is the upper eyelids
- Occusoft
- Cliradex


My next step is to go the naturopath route. I figure it can't hurt anyway- but I truly believe my issue is a skin problem that is affecting my eyelids, rather than an actual eye problem. I have my first appointment on Thursday. I'm also going to start trying acupuncture in conjunction with the holistic medicine. Fingers crossed, but I know it will take a long time.

If you have any ideas/questions, shoot me a message! I'll be on here routinely.

Best,

Russell

[deep_dry_eye]

Have you tried LipiFlow? Do you have a good diagnostic on whether its MGD or something else? Did you get scans? How many MGs are open? You need a good diagnostic first before being able to proceed with treatment. Getting a good diagnostic is not easy, I haven't been able to get one still myself after 1yr. Also, for quality of life, you can consider sclera lens.

I'm just 28 as well, it's been miserable as well for me since I've been unable to work

[MGD1701]

Hi Russell

Did you check if you have CCH/ Conjunctivochalasis which often under-diagnosis?

[m4shore]

Hi all-

I'm a 26 year old guy from Atlanta, Georgia. Right when this all struck, I was moving to NYC and had gotten into my dream PhD program. Unfortunately my eyes got so bone dry that I had to move back home with my parents and quit my job, so despite my username I'm actually in ATL!

I'll try to keep it brief, but here is my story:

I took Accutane during my Junior year of high school (2007-2008). Toward the end of my senior year, I started to become contact lens intolerant. I reckon because of Accutane, I had some mild MGD issues and mild dry eye. I switched to glasses and never had any problems. However, I wanted to play sports in college, so I actually decided to have LASIK done in December of 2010. Post LASIK, I had no issues at all, luckily. (Looking back, I would never have done it again, even with my good outcome- just too risky!)

Fast forward to this past December 2016. I had a big outbreak of eczema in my arm creases (always got it there throughout childhood- no big deal). However this time it appeared on my upper eyelids. The arm crease irritation went away as usual, but the eyelid inflammation never truly went away. It wasn't super noticeable so I just didn't bother with it. I suppose now that this is some sort of rosacea or skin issue.

I began to feel dryness in March 2017 and it got progressively worse. I first was able to see the doctor in early May and my schirmer scores were 7R and 4L. When I was tested again in August, they were 4R and 3L. I don't have visible gland plugging, but rather inflammation deeper in the eyelids that is causing poor quality oil. I reckon over time the bad oil disrupted my tear film, causing dryness and inflammation, which caused my schirmer scores to drop.

I still haven't found a local doctor that I truly like, but I was able to see Dr Latkany in NYC. He suggested I take better care of my allergies- I'm thinking that when allergy season hit, that's what tipped the scale and caused the snowballing dryness. I also want to give a big shoutout to Scott Kornfeld at Woodbury Optical. When I was in New York, he made me a pair of custom moisture chamber glasses that look amazing!!

My current regimen is:

Xiidra 2x day
Pazeo 1x day
100mg doxy 1x day (6 week prescription, currently starting week 5)
Cold compresses
Moisture chamber glasses

I've had very mild improvement. Nothing to write home about, and certainly nowhere close to comfortable, but Pazeo/doxy has helped somewhat.

I've tried in the past:
- Warm compresses (these just made the inflammation worse)
- Omega 3 supplements
- PRP eye drops
- I had one session of IPL but I decided to stop because it only treats the lower eyelids, and my big problem is the upper eyelids
- Occusoft
- Cliradex


My next step is to go the naturopath route. I figure it can't hurt anyway- but I truly believe my issue is a skin problem that is affecting my eyelids, rather than an actual eye problem. I have my first appointment on Thursday. I'm also going to start trying acupuncture in conjunction with the holistic medicine. Fingers crossed, but I know it will take a long time.

If you have any ideas/questions, shoot me a message! I'll be on here routinely.

Best,

Russell

Hey,

Have you considered Scleral lenses?
It's works for many dry eyers who've failed to find relief with anything else, including myself.

It can be problematic with inflamed eyelids, but definitely potentially doable.
Worth looking into.

[hosanna13]

Sounds like your problem is multifactorial: MGD, inflammation, and aqueous deficiency. Accutane can be considered chemotherapy. It's scary how easily dermatologists jump the gun on giving everyone accutane (and mutiple cycles of it) because it's so profitable (like LASIK). It likely exacerbated your underlying eczema and killed off your meibomian glands too.

Do you find Xiidra helpful? Have you tried lacriserts?

[DryinNYC]

Hi all-

Quick update. So I went to see a Naturopath and had a bunch of tests done. I found out a lot of stuff that might be useful!

1. Food Sensitivity Test - I found out I have a sensitivity to 26 different foods. The most severe ones were gluten, wheat, bran, milk and cheese, and eggs. But there were also lots of sensitivities to random healthy foods like: broccoli, bananas, cucumbers, eggplants, etc. The amount of sensitivities I have means I have "leaky gut" syndrome that allows food into my bloodstream and triggers an inflammatory immune response.

2. Neurotransmitting chemical markers (called an HPA test)- Showed that I have very low levels of dopamine, serotonin, etc. This is obviously the mental aspect/depression from having dry eye syndrome.

3. GI tract/stool test - This showed that I have a certain bacterial overgrowth of my intestines. It also showed a massive anti-gliadin IgA presence (this is the gluten response!). Lastly it showed a high amount of calprotectin in my stool, which again shows the intestinal permeability (leaky gut).

4. DNA test- This test showed that I have a genetic defect called MTHFR where my body can't produce folate, which is essential in a lot of bodily functions, including utilizing nutrients.

5. Blood test- This showed very poor liver function (the liver is necessary for detox!). I had high reading of ALT SGPT which shows liver damage. My liver is only working at 66% capacity. It also showed a severe vitamin D deficiency.

My naturopath is cautiously optimistic that by treating all of the things going on inside, we'll be able to quell the inflammation in my eyelids and get my back healthy!!

The path forward is as follows: Doing a Whole30 program and avoiding all my food sensitivities. The Whole30 is basically a totally organic GAPS diet for 30 days. I also will be drinking bone broth every day to help repair my leaky gut. Regular exercise every day, as well as 10 minutes of meditation. I'll also be taking vitamins and supplements to help rebalance my body and get it back on track.

It's been six months of ZERO help with regular doctors. I'm excited and hopeful about this. Hopefully by this time next year, I'll be able to start the PhD program I should have been in right now!

Best of luck everyone! I'll jump on and provide updates from time to time.

[MGD1701]

Thanks for sharing. So glad you have finally found help - I envy you. Good luck to you too.
My family dr even complained I requested (too many) tests. Actually just ran some basic tests (humble requests).
Some I needed to pay such as Vit. D - glad I did as it turned out the level is far too low .
He once said just put drops for dry eye.

[DryinNYC]

Definitely no relief yet though. Granted it's only been a day! I reckon it'll take at least a few months.

[MGD_OcularRosacea]

Hi DryinNYC,

I'm a fellow sufferer of MGD, (I developed it suddenly a little over a year ago). I'm 30, also had to quit my job and move home. It sounds like we've tried a lot of the same things, and I'm also currently working with a functional dr. and did similar testing to you. I'm being treated for leaky gut and candida overgrowth. I did the Whole 30 already, and am currently eating dairy and gluten free, as well as no added sugars and corn/soy. I've been doing this for almost a year and it hasn't helped. I'm curious to see how yours goes. I did not do the food sensitivity test though - do you know what test you took exactly?

Also, how did you like Dr. Latkany? I'm considering making an appointment with him (I've also traveled to see a few other specialists).

[DryinNYC]

Hey man- I did a 96 panel IgG food sensitivity test. It revealed quite a lot.

what tests did you do/what were the results?

Dr Latkany is really cool. He's not a miracle maker, but he definitely does a lot better at pointing you in the right direction than most doctors.

[MGD_OcularRosacea]

I did Geneva Diagnostics Organix (urine test), Diagnostic Solutions GI Map (stool test), Bio Health HPA Stress Profile (hormones) and was also tested for Sjogrens (so far I don't have any of the antibodies). I had high IgA like you, H-pylori, Giardia (which is a parasite!), and slight yeast overgrowth. Weirdly I have zero stomach issues, so it's a bit hard to believe in all this. I did take antibiotics for the H-pylori & Giardia though. I started seeing a new functional dr and I just did another blood test - I'm waiting on those results. I'm currently getting IPL treatments with Dr. Toyos in Memphis, and am using Restasis and PRP drops, and Omega 3 of course. My upper lids are also my worst - which is unusual. Toyos said my oil is like butter. He also said to stop all lid scrubs and warm compresses because he believes it makes it worse. I'm interested in trying Tacrolimus ointment because I read a different thread on here with a success story.

I just feel like it's so hard to find anyone that truly gets this (as I'm sure everyone on here can relate to) and I feel really hopeless.

[sophie0416]

I’m 26, and I feel like all of you, hopeless. Good luck NYC guy, I really really hope this works for you; no one should suffer this miserable symptoms specially at suck young age.

[DryinNYC]

I did Geneva Diagnostics Organix (urine test), Diagnostic Solutions GI Map (stool test), Bio Health HPA Stress Profile (hormones) and was also tested for Sjogrens (so far I don't have any of the antibodies). I had high IgA like you, H-pylori, Giardia (which is a parasite!), and slight yeast overgrowth. Weirdly I have zero stomach issues, so it's a bit hard to believe in all this. I did take antibiotics for the H-pylori & Giardia though. I started seeing a new functional dr and I just did another blood test - I'm waiting on those results. I'm currently getting IPL treatments with Dr. Toyos in Memphis, and am using Restasis and PRP drops, and Omega 3 of course. My upper lids are also my worst - which is unusual. Toyos said my oil is like butter. He also said to stop all lid scrubs and warm compresses because he believes it makes it worse. I'm interested in trying Tacrolimus ointment because I read a different thread on here with a success story.

I just feel like it's so hard to find anyone that truly gets this (as I'm sure everyone on here carelate to) and I feel really hopeless.

I forgot to mention that I actually used tacrolimus and elidel. Neither really did much for me, and it wasn't worth the risk of cancer without the reward of eye relief.

dont discount the gut health though! I really think it's related because my dry eye started immediately after taking antibiotics for bronchitis. I have zero digestive issues as well, but those types of overgrowth can steal nutrients that your body would have gotten! I wouldn't dismiss the guy health issue! You should definitely be on a probiotic though. All those antibiotics also kill off the good bacteria and you need that to keep the bad bacteria is check.

[MGD_OcularRosacea]

Mine actually started a few days after a course of antibiotics for a UTI...

[MGD_OcularRosacea]

What antibiotic did you take for the Bronchitis? I took Ciproflaxin.

How long did you try the Tacrolimus? Was it an ointment or drop?