Help! 3 eye doctors and still not convinced!

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I HAVE HAD THE WORST 4 MONTHS OF MY LIFE!

It started 4 months ago when I caught bacterial conjunctivitis. I bought antibiotic eye drops and it cleared up in a couple of days, however, 3 days later I noticed red vessels in my eyes flaring up again. This went on for 2 months and with each flare up I would use antibiotic eye drops and in would go down. I went to my doctor who suggested that I could have blepharitis so she referred me to an eye specialist. 

When I saw the first eye specialist I was using doxycycline already from my gp. He said my eyes looked fine and it does not look like bleph.

Eye doctor number two was rude and dismissive he said he saw some papillary injection under my eyelids and this is caused from allergies. I have never had allergies in my life!! And this started from the day i caught bacterial conjunctivitis, he could not see a correlation!!!! 

Eye doctor number 3 said I have dry eye and some allergic response!

I am not convinced with this. This is ruining my life, my eyes are always mildly red and they feel itchy. I have used lid cleaner, warm compresses and they don’t reduce the redness at all. 

I have had steroid eye drops that seemed to bring down some swelling. I have used antibiotic drops like fucithalimic which seemed to help a lot!!!!!

Why are no doctors helping or listening to me! This started 4 months ago since i caught bacterial conjunctivitis. I told the doctors about the bacteria blepharitis and they all just dismissed this and said blepharitis is from dandruff or malfunctioning glands! They didn’t even seem to know about this form of staph bleph!

​Please someone out there help me!!!!! Anyone had a similar experience?? I feel like I am the only one in the world who has this annoying, hideous thing L

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  • Posted

    Hi Ana, you say you have seen 3 eye doctors, were they all under the same Consultant?  I ssume they were Ophthalmologists in a hospital.

    First of all, have you had a look at this leaflet?  https://patient.info/health/Blepharitis.htm

    It is very informative.

    Secondly,  I have a very rare eye condition and also have Blepharitis and dry eye.  I have found that quite often, junior doctors don't have the knowledge of the more senior doctors and often give the patient conflicting advice.  At one point, with me, it got so bad, that they were contradicting each other and not listening to me.  I asked to see the Consultant, so that I could quote him whenever i was given conflicting advice.

    You can treat dry eyes and blepharitis yourself.  You can buy drops for dry eyes, ask for an ocular lubricant.  A long time ago, I was prescribed hypromellose eye drops, which are a lubricant.  I discovered I was allergic to hypromellose, so I use Liquifilm.

    As for blepharitis, my Consultant told me to run some hot water into your basin, put a drop of mild shampoo/handwash into the water and soak a flannel in it, then put the hot flannel over your eyes until it cools and repeat.  He told me not to get any cream near my eyes because that will clog the glands, which is part of the problem.  

    The various doctors and nurses had told me to use a cotton bud dipped in water with a drop of baby shampoo in it, which achieved nothing.  The Consultant's way works well.

    Good luck.

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    • Posted

      Hi

      Thanks for your helpful reply. Yes they were Ophthalmologists. One was a junior and the other two were pretty experienced. 

      Yes I believe I can manage this myself now.  I have given up on doctors it seems they don't want to deal with things that they can't quite figure out.

      I will use the eye drops and the shampoo and see how I go for the next month.

      Thanks again for your advice 

      Ana

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  • Posted

    Hi Anna

    I wnet back and forward to a hospital for 3 years, saw 3 different docs and contradictary advice like you. One said baby shampoo the other said NO,. I had steroid drops, various eye drops prescribed for me, even a nose sprayeek

    I eventually gave up and tried Lindas advice about "wet ones" have you read her posts. I didnt believe it but was so desperate I thought i would try it. So bathed my eyes most mornings and nights with hot water {no shampoo}. Used the wet ones about 4 times a day to clean my eyelashes. I used a different bit for each lot of eyelashes. Just cut one wet one up....goes quite a long way. I was being prescribed hypermelros {Sp} drops by the GP then one of the eye docs wrone and told her to prescribe Optive plus to be used 6 times a day. I'm stilkl getting both prescribed an i use the optive plus {6 times a day}  and before I'm due my next prescription I have run out or the 28 days is up. So I swap to the hypermelrose ones until I get my new lot.

    It seems to have worked. I never did use much mascara so that was no problem but I did use creams and eyeshadow. I stopped the eyeshadow and just used one cream

    Right it depends were you are....Im in the UK. The wet ones over here that have the ingredient lynda said worked have to be the blue original pack. in the USA its a different one. I've told you about the eyedrops and then I bought an over the counter eye lubricating cream {like a gel] Boots own make.  and that worked. I used that if the eyelids were itchy. I used Boots simple cream for eyes {under}.

    Today I decided before going out that I would put a primer on my lids then some eyeshadow.......they are watering again so I'll have to have a go at them again

    I'm not using the wet ones 4 times a day now by the way

    Love

    Eileen {UK}

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    • Posted

      Hi Eileen,

      Thank you very much for your advice. It's good to hear from other people who understand what you're going through. 

      I have some refresh eye drops now they don’t really seem to help with my redness but I will continue with them as apparently I have dry eye now. 

      I bought the wet ones a while ago tried it a couple of times but still had the redness in the conjunctiva of my eye. Maybe I need to try it for a month or so as I only used it a couple of days then stopped and then started steroids from the doctor.

      What are your symptoms? Do you get a red blood shot eye or is it just the eyelids?

      Thanks again for your response 

      Ana

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    • Posted

      Hi Ana

      They are not so bad now but when they were at their worse......My eyelids were inflammed, constant watering...so much that people would stop me in the street and ask if I was OK {they thought I was crying} Dry eyes was one of the things they said I had. My eyes were also very red. I had never tried eye drops 6 times a day but thats what one consultant said so I tried it

      I also tried the wet ones for a few days and they didnt do any good but when I got desperate going back and forward to the hospital I tried them and perservered and it has worked.

      This morning they are sill watering a bit....nothing like they used to.....but thats because I tried to wear make up on my eyes yesteredayfrown

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  • Posted

    Dear Ana,

    A friend and I were able to kill Blepharitis. My friend used an antibacterial facial scrub with Benzethonium Chloride in it. I looked for that product and it had been reformulated so I looked online and founed that WET ONES, antibacterial hand wipes had that in it.

    I used them (tore each one into 8 sections each time) 4 times a day for a week or litttle more then went down to 3 times a day for a few weeks, then down to 2 times a day for 2 months. My eyes itched once or twice after that. I jumped on them with the wipes for just a day or two and it was gone.

    The doctor who diagnosed the Blepharitis saw it was gone and told me it would come back. I said it had been 6 months.

    I later found out that Blepharitis can be a staphylococcus infection. The wipes kill staphylococcus. I had used antibiotics 3 different times in my eyes and the baby shampoo too.

    Notice what this one doctor online said about where to put the meds.

    " If patients have mild-to-moderate disease, she adds AzaSite rubbed into the lid margins twice a day, which is an off-label use. “Patients put one drop of AzaSite on one index finger, rub it between both index fingers, and then rub it on the four lid margins, where the eyelashes dive into the skin on the top of the eyelid wall,” she says."

    The new little machine for cleaning the eyes for Blepharitis use it on the eye lashes and the lid margins too. They use tree tea oil on the little rotating head to clean the eyes.

    So where you put the meds are important too. It took me over 3 months of using the wipes to kill it.

    I used 2 wash cloths (one for each eye) so that I would not reinfect each eye when cleaning them.

    I had the horrrible itching problem for 6 months. I was able to wear mascara and kill it at the same time. Thanks to my daughters. That involves buying throw away mascara wands online. I used 2 wands each time (1 for each eye). Bought new makeup. I never put a used wand into the new mascara. I still don't. I use wand for both eyes now as don't want that back.

    Dry eyes don't wash the bacteria out of the eyes like normal eye do. I use eye drops that are preservative free (very important).

    The wipes in the UK have Benzalkonium Chloride in them. Both Benzethonium Chloride and Benzalkonium are called Quats. You can google this info.

    Honjon on this site used them and had the same results as well as others.

    The only thing is if a personn is allergic to shampoos, detergents, hand wipes, fabric softeners or spermicidal jellies or even lanolin they should not use these wipes. Over 80% of people can use them.

    I hope this information helps you.

    Lynda79

     

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    • Posted

      Hi Lynda,

      Hi Eileen,

      Thank you very much for your advice. 

      I bought the wet ones a while ago tried it a couple of times but still had the redness in the conjunctiva of my eye. Maybe I need to try it for a month or so as I only used it a couple of days then stopped and then started steroids from the doctor.

      Did you get blood shot eyes and itchy conjunctiva? Or was it mainly just itchy and red on your eyelid?

      Funny how doctors can't really help with these types of things, you would think they would have far better cures and knowledge on some thing that seems not that complex.

      Thanks again for your response 

      Ana

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  • Posted

    Dear Ana,

    I looked up what conjunctivitis was on the Web MD. It is basically Pink Eye.

    Here is some information.

    The surface of the eye is exposed to various external influences and is especially susceptible to trauma, infections, chemical irritation, allergic reactions and dryness.

    The conjunctiva can become inflamed due to an infection or an autoimmune response. This is known as conjunctivitis and commonly referred to as pinkeye.

    An infection may develop when bacteria enter the eye or the area around the eye. Some common infections that cause pinkeye include:

    Staph infection.

    Haemophilus influenzaeHaemophilus influenzae type b (Hib).

    Cat-scratch disease.

    Gonorrhea.

     You may have Blepharitis and Pink Eye. The staph may have gotten into your lashes or lid margins. You need the antibiotic for the inside of the eye (Pink Eye) but if it is Blepharits you have to kill it on the outer lashes and lid margins.

     Dry eyes keep bacteria from washing out like normal eyes.

    This sounds like a terrible cycle you seem to be repeating.

    If it was me I would do the lashes 4 times a day when using antibiotic for the Pink Eye. The problem is it takes 3 months (maybe less for some) to kill it on the lashes and lid margins. You can keep it from reintering you eye, perhaps with diligence.

    Just what information I found. Hope it helps you.

    Lynda79

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    • Posted

      Thanks Lynda. 

      Yes I agree it travelled from my eyeball into my lashes and now it keeps going back into my eyeball and giving me pinkeye. I'm going to try the wipes and use an ointment at night for my eye. The tricky thing is I need to keep getting a prescription for the ointment from a doctor. 

      I'm getting my eyes checked on Wednesday by an optometrist so I will see if he can give me another prescription. 

      Will give it a shot.

      Thanks againsmile

      Ana

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  • Posted

    Hi Ana,

    Greetings from New Zealand. I can reeeeally sympathise with you on this one...I too have had the worst 4 months of my life with my bleph. Got so stressed over it I broke out in shingles which I think was a direct result of being so stressed and exhausted.

    I was also shuffled between doctors who were somewhat dismissive (which seems to be an overarching theme on all these bleph discussions world wide - why is that?!?) and for months I was flip flopping between allergy drops, lubricating drops, antibiotic drops, the hot compress babyshampoo routine - I was shoving so much crap in my eyes I don't think they knew whether they were coming or going!

    By the way, I tried Lyndas Wetwipes advice - went so far as to order them from the UK but they just 'burnt' the eyelid skin so I ended up looking even worse...a word to those wanting to try this - try a small amount on your inner wrist to make sure you don't have an allergic reation!

    I have a professional job and have been struggling with not being able to wear makeup anymore and am so tired of people asking "what's wrong?" due to the fact that I look like I spend my life crying with my red swollen eyes...went on holiday to Australia hoping it might get better but it got WORSE and pretty much ruined my holiday (and very nearly my relationship).

    When I got back I stormed into the hospital (actually I had shingles so I pretty much shuffled in) and demanded to see the eye specialist where I told him how it was ruining my life and if they don't do something NOW I was going to throw myself (or him) out the window.

    Jokes aside, I had read that Dioxycycline was used in some patients so I asked him if that was a possibilty...and he told me "well, it really is the last resort, but since you have been struggling with this for some time I will prescribe some for you..."

    Well, it's nearly two weeks later on 100mg of Doxycycline once a day and I am a changed person. To be honest I don't know whether to be ecstatically happy or really freaking angry that I could have been given this MONTHS ago and it would have saved me from having to go through this nightmare. My eyes still aren't 100% and I have the occassional relapse but I feel like I'm functioning much better and I've been sleeping too - hallelujah!

    So basically I have settled into a good routine of the Doxycycline plus hot washes at least twice a day, after which I have been applying a tiny amount of 1% hydrocortisone on my lids which the pharmacist told me would heal up the inflamed skin - plus it stops the insane itching - and then applying 100% pure Vit E oil after the hydrocortisone has had chance to sink in. This seems to help moisturise my eyes and it won't be long before I will stop using the hydrocortisone as my eyes are looking better every day, even though I have aged 10 years with this thing :-(

    I hope this helps - do ask your GP about Doxycycline - it has certainly worked for me.

    All the very best to you - you wouldn't wish this thing on your worst enemy!

    Cheers, Sophia

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    • Posted

       

      Hi Sophia!

      Thanks so much for letting me know about your experience! Also, I am from New Zealand too!!! Good to hear I'm not the only one that has been going through absolute hell! Sorry hehe. I know it takes a toll on you. For me I felt like all I thought about is this condition, it gets you down when all you can see and feel is your eyes…I've also nearly fell out with my partner he is so sick of me talking about my eyes lol... He was the one who passed the initial infection on to me... Can't hold him to it though.

      I used the doxy for 5 weeks and I do think it helped but I think I needed it for a longer time. That was prescribed from my gp. The problem is now I have seen 3 different eye specialists who have not given me a blepharitis diagnosis. They just flog me off with mild allergies!

      Interestingly I had a sinus infection 4 weeks ago and my doc prescribed me antibiotics for a week and my eyes defiantly went down from them too.

      Arghh, I'm on my last bit of hope with this. It gets me down to think I could have this localised infection forever.. Oh well, I guess sometimes things happen in life for a reason and we have to take what we can from this. Maybe it's to be more resilient or maybe it's to not take life so seriously  [razz]

      Anyway I’m glad you have found something that settles your eye. Keep me posted on your progress 

      ​Ana x

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