feel like I have almost tried it all .. advice needed

[zoe]

Hi!
I have had MGD /blepharitis for about 10 year. I went from moderate to severe over the last year. I just had Lipiflow done 3 weeks ago and my eyes have not gotten better. I have rosacea and am taking 40 mgs of Oracea daily. I have been on almost every drop.( tobraex, lotemax, azasite, restasis). Recently I had my hormones checked and I have zero testosterone and low progesterone. I have not tried the following:
testosterone cream for eyes
lacriserts
special contacts

I do have lower plugs and did have an upper plug removed due to the fact I had too many tears pooling down my face and I could not see. I now have a Schirmer score of a zero in one eye. Should I give the upper plugs a try again since my eye is bone dry.
Also I have lost lashed and have dry cracked skin in the corners of both eyes. Any advice would be appreciated!!!!

Zoe

[Guest]

I sympathize... it's frustrating to see things going downhill with no end in sight!!!

However, there's hope... have you considered allergies as a possible cause of your bleph?

In my case, I also have rosacea, and MGD. However, to my shock, when I gave up eating wheat, my stuffy nose/sneezing went away, heartburn went away, MGD cleared up almost completely (it now only flares if I eat wheat, or totally stress out my eyes in a major way dryness-wise), geographic tongue goes away and canker sores/mouth ulcers totally gone also. (I'm only mentioning the non-eye related stuff in case someone else sees some of themselves in my situation... I know it must sound a bit out there for all that stuff to clear up from simply giving up wheat, but it is what it is...) Needless to say, it was nice to be able to stop taking my steroid nasal spray, stop taking heartburn meds, stop taking oral antibiotics for the rosacea and MGD etc. Also, all of those symptoms I mentioned weren't so horrendous or anything that I gave them much thought... they were just little annoyances that I thought were being managed as best as they could be... was shocking to have them ALL clear up by simply giving up a food.

It might be worth getting allergy tested... also, since there is still so much unknown about how our bodies work, maybe consider giving up the food most commonly associated with allergies for a month to see what happens... if anything improves, you can add back the suspect foods one a week to see which ones are triggering any issues. You may turn up nothing by doing this, but if you DO find a correlation between giving up a food and your symptoms, trust me, you'll be glad to have found something out that helps you and that you have total control over!

If allergies end up being a dead end, don't give up... this is just a puzzle to be solved... (granted, it's an annoying-as-all-hell puzzle, but still... most puzzles CAN be solved, so there's hope for your puzzle too)

[LaDiva]

zoe, I suspect your low T may be most of your problem. Can you get your doctor to balance your hormones? Sounds like more than something a cream can tackle. I am going through the same thing, with a slightly different twist. Not sure my balancing act will help, because my T is low normal, but progesterone is all but gone, and loads of estrogen. It is impossible to know, but I'll bet that would make a difference for you. Also, I agree with SAAG regarding allergies. Stress also cranks up my inflammation. Good luck!

[zoe]

I sympathize... it's frustrating to see things going downhill with no end in sight!!!

However, there's hope... have you considered allergies as a possible cause of your bleph?

In my case, I also have rosacea, and MGD. However, to my shock, when I gave up eating wheat, my stuffy nose/sneezing went away, heartburn went away, MGD cleared up almost completely (it now only flares if I eat wheat, or totally stress out my eyes in a major way dryness-wise), geographic tongue goes away and canker sores/mouth ulcers totally gone also. (I'm only mentioning the non-eye related stuff in case someone else sees some of themselves in my situation... I know it must sound a bit out there for all that stuff to clear up from simply giving up wheat, but it is what it is...) Needless to say, it was nice to be able to stop taking my steroid nasal spray, stop taking heartburn meds, stop taking oral antibiotics for the rosacea and MGD etc. Also, all of those symptoms I mentioned weren't so horrendous or anything that I gave them much thought... they were just little annoyances that I thought were being managed as best as they could be... was shocking to have them ALL clear up by simply giving up a food.

It might be worth getting allergy tested... also, since there is still so much unknown about how our bodies work, maybe consider giving up the food most commonly associated with allergies for a month to see what happens... if anything improves, you can add back the suspect foods one a week to see which ones are triggering any issues. You may turn up nothing by doing this, but if you DO find a correlation between giving up a food and your symptoms, trust me, you'll be glad to have found something out that helps you and that you have total control over!

If allergies end up being a dead end, don't give up... this is just a puzzle to be solved... (granted, it's an annoying-as-all-hell puzzle, but still... most puzzles CAN be solved, so there's hope for your puzzle too)

thanks for the advice!! I have often thought about going gluten free just to see. I have been tested for allergies many years ago, but not for food allergies. thanks for the advice!

[zoe]

zoe, I suspect your low T may be most of your problem. Can you get your doctor to balance your hormones? Sounds like more than something a cream can tackle. I am going through the same thing, with a slightly different twist. Not sure my balancing act will help, because my T is low normal, but progesterone is all but gone, and loads of estrogen. It is impossible to know, but I'll bet that would make a difference for you. Also, I agree with SAAG regarding allergies. Stress also cranks up my inflammation. Good luck!

Yes do think that my drop in hormones is a huge factor. I recently started biodentical progesterone and testosterone. I was hoping to see a difference, but I have heard it can take a while to adjust the amount. I would love to try the cream on my eyelids, but they are so bad right now that I'm scarred to do anything new. My sleep is disturbed due to perimenopause, so I am thinking testosterone is playing a role in drier eyes. Good luck to you and please keep us posted!

[zoe]

Can I ask if you are trying pellet hormone therapy? My doctor wanted to try the creams first.

[LaDiva]

Hi zoe,
I am taking pills, but just changed my insurance provider and doctors, so that could change. I guess some doctors prefer creams. I was told it would take about three months to turn the hormone imbalance around and see improvement, but I already feel better and it has only been a couple of days. My eyes are about the same so far. They feel a bit better, but still don't look very good. Really hoping this helps, for both of us! Thanks for your good wishes, and I say go ahead a try the T cream. I don't see how it could hurt, and if you don't like it, you can always stop using it. I am quite a bit older than you, so am pretty daring about trying just about anything. Will be interested to know how you are doing in the future!

[spmcc]

However, to my shock, when I gave up eating wheat, my stuffy nose/sneezing went away, heartburn went away, MGD cleared up almost completely.

Hi SAAG,

Can you tell us more about giving up wheat? Is this the same as gluten-free? I ask because I know people give up wheat by not eating baked goods (bread, crackers, cookies, cake etc.) and pasta. But they still eat lunch meats, spaghetti sauce, soy sauce, ice cream, condiments, salad dressings, etc. which all contain gluten. Gluten is used as a thickener in TONS of things that don't seem like "wheat".

Thanks for more specifics on going wheat-free.

[Guest]

For me, it's primarily wheat. A side effect of giving up wheat has been to eliminate most gluten also, but you're totally right about gluten being in a ton of other stuff. For me, my wheat thing seems to be dose dependent - if I were to go back to eating wheat products for breakfast (ex. most cereals, toast, muffins, pastries etc.), sandwich or bagel as main part of my lunch, and pasta for dinner (or maybe garlic bread etc), I'd have all my old symptoms back. On the other hand, if I indulge in wheat once every week or two when out socially, I seem to be able to handle it with minimal ill effects.

I honestly don't know if my problem is just wheat, just gluten, or both. I haven't been motivated to find out so far since what I've been doing has been working for me. Or heck, maybe it's a carb thing... by cutting out wheat, my diet has become much lower in carbs than it's ever been before - rather than toast for breakfast, I usually eat raw fresh fruit and a handful of raw, unsalted nuts... sometimes I'll have oatmeal mind you, which would have carbs. Lunch is usually a huge salad with lean cooked chicken or cooked steak (sliced thin on salad). Supper is half a plate of vegies, small portion of rice or potatoes and generous portion of meat. There are some interesting theories out there that a high carb diet tends to be a pro-inflammatory diet... so that could be part of the reason for my success with cutting out wheat also... who knows...

I must admit, at the beginning, I really, really missed the wheat products... but now that I've been at this for a while, I've grown to enjoy the abundance of fresh fruit and vegies every day... don't get me wrong, I DO still get cravings, but it's not nearly as hard as it was in the beginning (most days it's easy now)

Since you mentioned spaghetti sauce, gluten/wheat free pasta sauce is super easy to make too - brown your meat with onions and chopped up celery, add some high quality canned diced tomatoes, some tomato paste, simmer for 1/2 hr, salt and pepper to taste and voila! Plus, you can make a triple or quadruple batch and freeze most of it (in meal-size portions) for easy meals some other day. I discovered a rice pasta that tastes pretty much like "real" spaghetti too... the only downside is the rice spaghetti doesn't keep well and is best eaten same day it's cooked.

On the topic of condiments, once you're no longer eating bread, you don't have much need for condiments or sandwich meat. Also, for salad dressings, I was making my own with olive oil and balsamic vinegar for a while, so that took care of any gluten/hidden-wheat worries there.

As for soy sauce, if your store has a wide-enough selection, there will be some soy sauces that do not have wheat additives in them... I have a VH brand one where the only ingred's are water, glucose-fructose, salt, caramel, hydrolyzed soy protein, corn syrup, citric acid and sodium benzoate.

As for other hidden sources, best advice is to either learn all the lingo (which I have no patience for... yet), or just go to a cooked-from-scratch diet... that's the easiest since you're adding all the raw ingredients yourself. Easy to switch to corn starch for a thickiner in gravies/soups, easy to make homemade soups where you know exactly what's in them etc., plus eat lots of fresh vegies and fruits to fill you up, plus lean protein sources that you prepare yourself (no processed luncheon meats!!!)

Also, after another member of this forum suggested it to me, I tried Udi's gluten-free bread - it's the best non-wheat bread I've tried so far. I've been enjoying it once in a while for breakfast - toasted, then topped with a mostly-fruit jam (ie. not the stuff that's all sugar), then some slices of brie... mmmmm....s Haven't tried it for sandwiches yet since I'm afraid it will disappoint me... I am super picky about bread and like it soft and super fresh... in my wheat days, I'd only buy bread if it was made fresh that day... (maybe I had to eat too many sandwiches made with many-days-old bread as a kid... who knows... ever since living on my own, I'd always indulge in only the freshest bread... hah... what a bread-snob I must sound like!!! )

[LaDiva]

SAAG, I quite eating wheat, rye and barley, but for some strange reason can eat spelt bread. The other three give me major headaches. I was waking up just about every morning with big ugly headaches, and don't have them anymore. Udi's is great stuff, and if you drop it on your foot, you don't break a toe! I've got to stay away from tomatoes, vinegar and soy sauce though because of Rosacea.

[marsupial32]

Hi, Zoe, I cannot imagine the pain of 10 years of MGD--I have had it for the past19 months & I became a different person--really anxious and depressed. It destroyed my quality of life. None of the ophthalmologsts I went to diagnosed it so a doc they referred me to mentioned meibomian glands, but never said that they were a cause of my dry eye. I started Googling the term and found this Dry Eye site with its wealth of info. I also found Lipiflow mentioned here & tried it last summer at the Stein Institute, UCLA. It helped for about 2 months but my eye started regressing again. I also found out about Dr. Connor who has patented various creams such as testosterone for treatment of MGD. His creams are not yet on the market so my endocrinologist prescribed a compounded 3% transdermal cream. I tried it for several weeks but it did not help very much. It caused increased inflammation. It also was not supposed to have any systemic effects, but it did. Enough got into circulation causing swollen,sore breasts. Other antibiotics, steroids, and, in general, anything with the BAK preservative I could not tolerate. Restasis which has helped many people also caused increased inflammation. I almost gave up but in Jan. I was able to switch to a PPO & went back to my old ophthalmologist who, in addition to doing cataract surgery on my eye, also referred me to a great doc at Doheny Institute to see if my corneal damage, dry eye & inflammation could be treated. It could and it was! I received a prescription for autologous serum which sounded like the perfect solution since it is non-allergenic, preservative free & has almost the same chemical makeup as tears. I have been using it for 2 weeks & the effects are remarkable. After only a day the swollen lid was normal, all inflammation was gone, no burning, blurring , crusting--it is as if nothing was ever wrong. I don't know if the serum is a solution for everyone, but it is worth looking into. As for hormonal imbalance, it is certainly a factor since it is mostly menopausal women who are more prone to MGD. I have been taking bioidentical hormones (estradiol, progesterone) transdermally for years & my levels are good so this was evidentally not a factor. I have read that the meibomian glands make their own testosterone from a precursor & do not (at least in women?) get much from the normally low amount in circulation. The T cream sounded perfect but for me it was not the solution. If you Google "autologous serum eye drops" you will find lots of references. It is not a new substance since it has been around since Dr. Fox's work in 1984; it seems to have been resurrected in the last several years, but none of the docs at my previous HMO ever mentioned it. Read up on it; it may help. See if your ophthalmologst knows about it!.