posted
I avoid all steroids. During my four years of misdiagnosis, I received steroid injections which caused several new symptoms and permanent damage. When I learned I had Lyme, all steroids stopped.
A couple of years ago, I developed severe chronic dry eye and blepharitis. I use Restasis and several OTC eye drops a day.
Today, I saw my opthalmologist and he said that I had to use FML (a steroid eye drop) 4 times a day for the next couple of months, to treat a new infection (or disease?) caused by the dry eye.
I told him I had Lyme Disease. He looked skeptical and asked me when I was diagnosed. I gave him the whole story (I avoid telling some of my docs that I have it because they don't really need to know and it just causes problems with them).
He told me that I can use the eye drops, no problem. I think he said there is no systemic absorption? I've heard the same about topical steroid ointments but I don't use those, either.
I haven't really found any good information about this. Apparently, for the new eye issue, steroid eye drops are the only cure. But I have Lyme and if they will negatively effect me, I need to know for sure.
Thanks for your help.
luce
Posts: 43 | From Grand Rapids, MI | Registered: Aug 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You need to ask your LLMD.
Sometimes, steroid eye drops are necessary to save vision. However, if not necessary, there are other ways to approach this. I, too, was told to use Restasis and steroids but my eye doctor was clueless about lyme (and all the other stealth infections I have) I use eye drops that my ND - naturopathic doctor - recommends. I am much better with those. But, if I ever needed short course of steroids in an emergency, I'd want a LLMD's advice.
My GP who is not all that informed about lyme did not want me using Restasis. He said I would then have to use that the rest of my life. It's really liquid cyclosporine, the same thing given to patients who have organ transplants to suppress their systems. As I also have HHV-6, that could be problematic.
Does your LLMD know of a good eye doctor. It would be so great if you could see a LL eye doctor.
EyeBob is an eye doctor who posts here sometimes. I hope he will be around. But, today, I would call your LLMD about this.
I also have "chronic dry eye" - it frequently comes with lyme. But, has anyone told you that it's also connected to adrenal dysfunction (and that also goes with lyme).
There are many other ways to approach this once you get the emergency handled. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- From my file notes. Notes, expereinces - or clips of advice that I was given that may help: ---------------
I used Vitamin A eye drops from a compoundind pharmacy. Any doctor can order these. They need to be refrigerated and pay attention to expiration date.
Effect of Retinol Palmitate Eye Drops on Experimental Keratoconjunctival Epithelial Damage Induced byn-Heptanol in Rabbit.
===================
You may need to give the artificial tears quite a bit longer to produce the desired effect.
There is a download from Allergan (allergan.com???) called the Ocular Surface Disease Index (OSDI) which is a 8-10 question survey to help rate your dry eye.
Download it and fill it out, then do a new one every 3-4 weeks while you use the drops.
It's a way to objectively measure whether you're making any progress. The dry eye you describe doesn't necessarily get cured by using drops, but it will improve. How much improvement varies.
Remember to drink lots of water. Research has conclusively shown that the increased intake of fluids can significantly improve tear film secretion.
Certain supplements have also been shown to improve tear production. Specifically, our practice recommends that our patients get adequate amounts of Omega 3 fatty acids (EPA, DHA, ALA) and certain vitamins (A, E, C, B6).
Recently a few products have become available that incorporate these supplements. HydroEyes� from sciencebasedhealth.com and Theratears Nutrition� from Advanced Vision Research are among our favorites.
Of course, a high-quality cod liver oil (by Carlson) taken together with a good multivitamin can accomplish the same effect.
=================
Another product that will help is a nutritional supplement called HYDROEYES manufactured by Science Based Health Inc. at 1-888-433-4726 or ...
HydroEye is available at Promise Book Shoppe, a non-profit book store located in St. Luke's. For more information, please visit their web page or call 1-800-282-9905 ext:3323, Monday through Friday, between the hours of 8:00 a.m. and 4:00 p.m. E.S.T. or email us at [email protected]
Vision: Natural Ways to Maintain Eye Health - By Jim English -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Forgot to mention that if you do use the steroid eye drops - and all the time when on Restasis, you need to be on treatment for lyme at the same time.
Still, I'd not take eye advice from a non-LL doctor. Although, that's easier said than done. My eye doctor is clueless, too. None in my state are LL. I know it's also hard to find LL doctors of any kind in your state.
Lyme affects the eyes in many ways (and also with vision disturbances from inner ear dysfunction that is caused by lyme, too). It is my opinion that all lyme patients also deserve eye doctors who are thoroughly lyme literate.
Hope your LLMD can help.
Did your eye doctor also give you antibiotic treatment? Did he assess for staph infection?
Posterior blepharitis or rosacea-associated blepharitis
============================
Rosacea is also very common with lyme and may be caused by infection and, lyme, itself can cause all kinds of eye problems that non-LL doctors can miss as the underlying cause.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I am now wondering if my eye problems are related to Lyme - just diagnosed. For some time I have been having weepy eyes at night that forms a yellowish crust that gets all over my eyelashes and down my face. During the day it presents as some weeping but a clouded white substance in the corners of my eyes.
Is this the same thing you have been talking about here?
I just got back from vacation in CA and saw my mom's Opthamologist (she used to work for him) who sent me to an eye disease specialist - saw him the next day. They did scrapings and sent to the lab which came back negative. He said I'd have to find someone locally.
I called my LLMD and he told me about a LLOpthamologist who I will be seeing mid August. It will be interesting to see what he comes up with.
I wear contact lenses. I am hoping that I don't have to give that up. They are so much more comfortable and I can actually see better with them when it comes to fine print.
-------------------- Dx with Lyme & homozygous for MTHFR. Antibiotics & nutritional IV's didn't help. Posts: 57 | From Kansas | Registered: Jun 2010
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posted
I was just reading about my Restasis and saw that it is cyclosporine ophthalmic emulsion. Cyclosporine is an immunosuppressant so I can't take the Restasis either, right? AAAArrrrgggghhhhh.
I've been through all of the eye drops from Soothe XP to Genteal, TheraTears, Blink, etc. I use them every hour and in the middle of the night. I've been avoiding Restasis because it's expensive but I had no idea that I wouldn't be able to use it. Luckily, I haven't been using it for long.
Does anyone know if there's anything else I can do for my eyes? Thanks.
Posts: 43 | From Grand Rapids, MI | Registered: Aug 2007
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
I have severe dry eyes. Eyes very painful and also extremely sensitive to sunlight, glare etc. To go outside I have to wear tinted jockey goggles. I can cry emotional tears. Seems I lack or have very little of oils from meibomium glands. This from Sjogren's or LD/TBI I don't know. I had Sjogren's test again just this week and apparently is negative for SSA antibodies as well neg ANA and Rh Factor in normal range. Would appreciate thoughts from others this regard. All this to say I use Restastis drops am/pm. Optho says not systemic and he says they are helping my eyes. I have had lower tear ducts closed. I wear bandage contact lenses ie no correction - I think mostly to protect my cornea - they are Ciba Air Optix night/day - but I don't sleep with them in. I usually take 50 mg Doxy/day but stopped this summer due to sun. FWIW I also have dry mouth. This going on for four years - still no def Dx. Optho does not understand why my eyes so painful. Therefore, I ,too, wonder if my severe eye troubles due to LD/Bart. Hope my info helps you. If someone can help me this regard would be so thankful.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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posted
I also have this and have tried all the drops. Eventhough my optho said "no" to Similasan Dry Eye Drops, it seems to help me the most so I use it anyway. She really got mad at me when she asked what made my eyes feel the best and I answered "organic coconut oil"!!!!!!! I asked her what was soooo wrong with it and she said it's the wrong pH. I haven't used it since but when I used it right before bed, I swear it made my eyes "feel" better!!!! I also like Optive.
Is Dry Eye Syndrome something that will reverse with lyme treatment in time??
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
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posted
My eyes are so dry from Lyme that I'm no longer able to wear my gas permeable contact lenses, only glasses now. I too get the yellow crust and white goo in the corners of my eyes.
Posts: 495 | From USA | Registered: Mar 2010
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
This is a most interesting thread.
I've probably had Lyme for 35 years.
About 20 years ago (not sick yet) was diagnosed by an Opthamolgist with Blepharitis. The Dr. wanted me to wash my eyelashes twice a day with baby shampoo with cotton balls and also use an OTC product called Hypo Tears. She said I would probably have trouble with my contacts and I should wear only hpyo allerginc mascara. She also said that while I didn't have the crusty eye and eyelashes - many people with Blepharitis did.
I did the baby shampoo and eyedrops for a while then it got old. Gave up my contacts (couldn't see out of them - eyes too dry)
Fast forward to the early 2000's - got real sick finally diagnosed with Lyme, etc. etc.
A year into my Lyme treatment I was blessed to see a Lyme Literate Neurological Opthalmologist right in my area! He said my dry eye issues were a combination of 1) Heredity (mom's side) 2) Lyme Disease and 3) my medications.
He put punctal plugs in my eyes a few times and also has me use Systane (an OTC product).
My eyes are SO much better! In 2006, I couldn't sit near a fan my eyes were so dry and now I'm pretty comfortable. I see my Neurological Opthalmoligist a couple time per year and I'm a happy camper.
He is also keeping a close eye on my floaters.
Posts: 1761 | From USA | Registered: May 2006
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posted
HungrySquirrel, I'm not an Opthamologist, but if it is the only thing that helps, I'd do it.
-------------------- Dx with Lyme & homozygous for MTHFR. Antibiotics & nutritional IV's didn't help. Posts: 57 | From Kansas | Registered: Jun 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
DON"T!!!!
I was misdiagnosed and given steriod drops for my dry eyes. They became so inflammed I could hardly see. It was extremely painful.
I have said this many times. Go to your health food store and get the best brand of hyaluronic acid you can buy. It is collagen which is what the fluid in your eyes are made of. Take at least 100 mg a day and you will see improvement in about 5 days.
A friend told me about this. what a life saver!
As long as I take mine, my eyes are fine. It will also help your joints and skin.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Wow... thanks! I was just catching up with old posts and saw your post about Hyaluronic Acid. I will give this a trial to see if it helps. My eyes are getting very dry again. It seems to be the worse when I turn on the home heat the first time.
HungrySquirrel, yes, I did (last year) put coconut oil in my yes before going to bed because nothing else would help! I ADVISE AGAINST THIS THOUGH as my eye doctor not to because it is not the right ph.
Best,
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
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Oh, well, maybe I do, I grew up in CT and I have arthritis..
But, anyway. A few years ago I had terrible pink eye and then clogged lower eyelid ducts and blepharitis.
They gave me those steroid drops and anti-biotic drops and I just got worse.
I got better by doing twice daily lower eyelid scrubs... I don't remember, but I think I might have bought something over the counter to do it.
AND, a really good doctor told me I had to MELT the OILS that clogged the ducts. He told me to apply a very warm folded face cloth (I squeezed it kind of dry and kept heating it up in the microwave... be careful!) He said to hold it tight and curved to the eyelid area with my eyes closed... several times a day for at least 5 minutes each. It needs a full five minutes to melt it.
I would have to keep re-heating it a little to get enough heat for five minutes.
It took awhile, but my ducts started working very well again.
Good luck. Mary
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Just be sure you buy the vegetarian source , not rooster comb or chicken sternum which is the cheap stuff that does not work as well. I take 100mg a day.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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I spent over an HOUR last night trying to remove my contact from my left eye. I tried EVERYTHING!
I've only been wearing contacts for about a year or so I just chalked it up to inexperience. It's only happened 2-3 times, but last night was the WORST!
I wanted to yank my eyeball out. All I could think of was where I could find a "eye" sized sink plunger to "unstick" this contact. My eye hurt so bad this morning, I had to cancel my cardiologist appt. that was scheduled. I was afraid to drive. It's much better now.
I use ReNu lubricating/rewetting eye drops during the day when I need to, but I didn't use them yesterday (that I can remember.) I think I had them in for too long as well. I wear ProClear Multi-Focal lenses. I love them, except when they get STUCK!
I have noticed that my eyes have started to get increasingly dry, and my mouth is always dry. I even had extremely dry areas on my face a couple of weeks ago, which is unusual for me. I've got oily skin, and the humidity in Houston just adds to that unfortunately.
It's interesting that my GI doctor has ordered an endoscopy with a biopsy of my duodenal sweep. The CT scan of my abdomen showed it to to be distended and he wants to rule out scleroderma.
I never thought of that being an INTERNAL thing, but apparently it can be. I'm hoping it's not.
Anyway, I'm just putting some of these sx together and wondering. I've had neg. lab work in the past for lupus, scleroderma, sjogren's, etc. But then I'll flip flop with a positive ANA, then a negative ANA............who knows?
Just did lab work for ANA today. Did lab work for Spectracell yesterday ---- the micronutrient panel.
I just remembered that maybe 15 years ago or so, I had my tear ducts checked out. My eyes would water constantly with tears only coming out from the OUTER corners of my eyes. It was so bad I would get chapped skin on the corners.
Finally, an eye who knew what he was doing noticed that my tear ducts were blocked. He opened them (NOT a pleasant experience) and said he wanted to try to open them and not put tubes in them first.
He must have done a great job, because I haven't had any problems with my tear ducts since, unless I'm getting dry eye from not producing enough tears? Are my tear ducts messed up? I mean, I cry normally and my eyes water normally (or from the inner corners.)
This is all great info to know about all of the different eye drops. I go see the eye doctor on Monday to see what's going on.
Posts: 268 | From Texas | Registered: Aug 2007
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17hens
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