I DO NOT have Bleph! Misdiagnosed 10 times!

Posted , 7 users are following.

Yesterday I was told I DO NOT have blepharitis. I was misdiagnosed with it by 4 eye specialists and 6 optometrist before I went and seen the best of the best to be told I absolutely do not have it. My Crohn's disease is in fact causing my eye to be inflamed. Hence being on the FODMAP diet is the best option and is working! In just a week I have seen significant changes and improvement. 

The specialist I seen yesterday also told me that all of the eye drops, steroids, lid wipes, hot compresses etc, have just flared the eye and eye lid up even more as they eye doesn't take well to misused products and it causes further issues and sometimes long term or unreversable issues. Please be careful with your "bleph". Make sure you get many opinions as I did and spend the money to see the biggest and best specialist you can. I have now wasted over $6,000 over the last 11 months on this thinking I had bleph when all it was, was simply the need to change my diet and my tablets that I take for my crohns! 

Please be careful!!!!!!  Just because it looks like bleph doesn't mean it is! 

Also be sure to see a Dermatoligist before accepting you have Bleph as this specilaist told me there are several skin conditions that happen around the eye, eye lids and lashes that are misdiagnosed for Bleph, when it is simply a cureable skin cond.

1 like, 18 replies

18 Replies

  • Posted

    I'm so happy you were finally diagnosed correctly. I went to 4 doctors and weeks of allergy testing that charged my insurance $100's.

    mine is under control but I still feel it could erupt at any moment. I use the wet one wipes. my derm didn't like the, and said don't use them. she then gave me another ex, which would be the 4 th one and co pays now adding up to real money. 

    i stuck with wet ones and Vaseline. I try to never ever touch my eyes with my hands.

    one doctor said it was bleph but all other thought it was allergy that presented like bleph.Im just so happy I can wear my make up!!! 

    Sorry for typos my iPad does what it wants to.

    • Posted

      Hi Karen, 

      Thanks for the reply. It is good to hear you can now wear make up. I am still not wearing any for the time being, but I cant wait to be able to wear it again. My aim is to be able to wear it on my 24th birthday this year! So I have until the second week of June to get comfortable with make up. Fingers crossed my skin (dematoligist working on this with me) will like it again.

    • Posted

      My brother-in-law is an opthamologist in U.S. (Florida, which

      is where I live) and cautioned me about using Vaseline in

      the eye.  He said the grease could get behind the eye ball

      and cause problems.....just a heads up....probably need to

      ask your doc if it's okay......don't want more problems than

      you already have.  And you're right once you put your

      fingers in your eyes the day is going to be bad. 

    • Posted

      Faye, you are correct it is not a good idea to use vaseline close to the eyes as it can cause more issues, for example, it can block the memb. glands and make Bleph much much worse and it can require surgery to unblock the glands again. 
  • Posted

    Glad you are finally sorted.  Yes there is a long list ot problems that can mimic blepharitis.  Some are potentially serious but fortunately rare.  In general there is no point in contnuing treatments that don't work so the bottom line is don't persist with treatments that could be worse than the disease!

    Actual blepaheritis is not serious but definitely annoying and requiring regular attention to "lid hygiene". In the case of crohn's disease there are modifying treatments for the bowel inflammation that may also benefit the eye symptoms.

    • Posted

      Your right Robert. I am no longer on any treatments other than doing a Johnsons baby wash/mixed with water, clean twice a day. Just to ensure my eye is always clean and free from any dust, dirt, etc.

      I am currently on a modifying diet which is helping my crohns and my eye. win win!

  • Posted

    hopefully things will be looking up for you from now on .

    In the UK your doctor would have to get you an appointment with an opthalmic surgeon to be absolutely sure .If in the case of posterior bleph , and if you were over a certain age , it can so wrongly be diagnosed as " an age related eye  dryness problem " . that was as in my case until it went " non posterior" and then the doctor got me to see a specialist who after 30 mins gave the diagnosis .

    sorry to hear about the Crohns , but good news about the future of your eyes !

    • Posted

      Hi David, yes in Aus our doctors send us to an OS as well. I seen many of them though and then seen an excellent one to get the result of absolutely not bleph, the other day. He couldn't believe others had said I had it. He said it was clear, very clear, that I didnt and that I should put in complaints for lack of care etc. 

      It is amazing how many OS and eye specialist actually have no idea what they are talking about, or, are to lazy to diagnose corrrectly and just palm it off as Bleph.

    • Posted

      On the diagnosis issue , I'm wondering why they can't take a " swab " from around the eyes or better still from the glands themselves and come up with a "profile" of exactly what the bleph germ is and use this as the bench mark for diagnosis . You see these programmes on Tv where they 'll swab say kitchen or bathroom surfaces and grow " cultures" in the lab and identify them , so why not for bleph sufferers or suspected bleph sufferers ? We have a tv prog here called " embarrassing bodies " , maybe someone with a bad , ugly case could get on this Tv prog ?

      If there is anyone reading this who is engaged in bleph research ( thinking Birmingham area of the Uk where I'm told they are looking into research ) would you please make a mention on the site . PLEASE !!!!!!

    • Posted

      that sounds like a great idea...I feel like everyone gave my eyes a quick look and just decided whatever.... 

      i won't be using the Vaseline anymore though due to the comments about how it could travel in your eye. I never put it that close to my eyelids . still don't need another problem. 

    • Posted

      Interesting idea but the problem is the bugs are allegedly "commensals" meaing they live on the skin without causing problems in most people. The species include Staphlococcus epidermidis, various diptheroids and corynebacerium species. (The latter are also implicated in acne.) Perhaps the bacteria secrete toxins, perhaps the problem is more due to the host raising an excessive local immune response causing inflammation.

      If these bacteria were not present perhaps worse organisms would live there like Staphlococcus aureus and Pseudomonas to cause serious corneal ulceration and blindness.

      The lids are teeming with bacteria and they don't just lie on the surface but also penetrate deep into the lash follicles.

      Perhaps this explains much of the general advice to clean the lids: bacteria grow on moist dead skin. Simple cleaning gets rid of enough bacteria to make the eyes more comfortable.  Also grubby greasy skin flakes when broken down by bacterial enzymes release irritable fatty acids and so cleaning also helps by removing the bacterial food supply.

    • Posted

      i came across an image of a "bleph" related- problem bug once on the web ( greatly magnified of course ! ) and it gave me the creeps to think  that it's "relatives" were living in my glands and blocking them !

      Have you gone down the wet ones route yet or are you coping without ? Without my glasses on , going anywhere near the eyeball suface is a dodgy mannouver . I'm still using blethosol soaked into a cotton bud tip and doing the upper lid is a nightmare , the bottom lids not so bad . For the past few days the right eye , again , has been bloodshot but only on one half of the eyeball so I'm wondering if the gland openings on that particular side of this eye are blocked most of the time ?

      Good posting Robert , thanks

    • Posted

      I'm trying the wet ones....into 2nd week....I don't see anyone complaining of the same problems I have....I was told about 25 years ago that I

      had blepharitis and the only help was the usual...soak, clean with

      baby shampoo....It has gotten worse of better over the years but

      I don't have some of the horrible issues some bloggers do.

      I mainly have a crust at the base of upper lashes and nothing at all

      on the bottom.    No issues inside the eye...no bloodshot or

      tearing.  When I soak some of that grit on the upper lid flakes

      off into my eyes and I feel like I have sand in my eyes all day.

      No amount of drops wash it out.  I ordered the Optrex but

      it's taking forever to arrive coming from the UK I guess....I do feel I'm getting some relief with the wipes.  I'm sure things got worse

      when the spring allergies arrived for all of us.....I'll just keep

      experimenting and see what works for me.

    • Posted

      Hi faye , I'm at the easier end of Bleph  now, the dry eye problem . The gritty running eye and infected skin now being a thing of the past . Apart from every night putting the lacrilube in each eye i've been not using anything other than boiled water and soap to keep skin and lashes clean . I'll give the wet ones ago this weekend but only on the non bloodshot eye in case i touch the eyeball with the wipe . I've had to revert to the use of the eyebag now and then and that makes me feel more comfortable but i wouldn't use it whilst an eye was bloodshot . Robert posted some interesting stuff which to me boils down to the fact that regardless of any eye problems we all have numerous " germs " about our skin ( near our eyes ) and it all depends upon what that balance is between them as to whether we're the ones with problems or not .

      It's definately optrex eye bath and lacrilube tonight but no eyebag because of the sensitive bloodshot eye . i keep forgetting to take the cod liver oil at meal times ! i get bouts during the day when the glands  appear to be functioning ok for quite a while but then it's back to square one . As you say keep trying and experimenting to see what helps .

    • Posted

      Simple remedy for blepharitis.  David I am an ophthalmologist and many of my patients have blepharitis. Over the years I have simplified my instructions so people can easily comply.

      Johnsons baby shampoo is often recommended e.g. "make a fresh dilute solution each day with cooled previously boiled water". BUT the trouble is it takes half an hour to boil water and let it cool et cetera when people are often in a rush to take the kids to school or get to work. Also most people make the solution far too strong which causes irritation and defeats the purpose...  This is all way too FUSSY. 

      So now I recommmend ordinay hair shampoo.

      Just get in the shower,

      wash your hair then with the suds on your finger tips proceed to rub on your your closed eyes and lashes with firm pressure from side to side for 30 seconds

      then wash it all away. 

      There it is - job done. 

      This takes very little time. Most people shower daily or every other day.

      The heat of a shower help to open the pores and Meibomian glands better than cold solutions.

      The firm lid massage helps to loosen blocked secretions in the glands.

      If your shampoo causes irritation try the brand "Simple". 

      Never use soap near the eyes as it is too drying and causes irritation.

      I am concerned when people use cotton buds along their eyelashes because it is so easy to cause a corneal abrasion - ouch.

      I agree the Blephasol is a useful cleansing agent but would advise using this in the same way in the shower (a few drops in the palm of the hand, then dip finger tips in it and then rub firmly on the closed lids and lashes and wash off again).

      Alternatively Blephaclean sachets (like mini wet wipes but actually designed for the eyes).

      The wet wipes often recommended on this site are in my opinion far too strong and anyway it is impossible to sterilise the eyelids.

      Of course this won't help everyone - just the majority and there is still a case for treating co-existing dry eyes with lubricant drops or gels etc.

    • Posted

      i've always been a soap , water and hot flannel man . Never had a dry skin around the eyes propblem like the ladies often appear to be blighted with . Maybe facial wipes , preffered by the ladies , are a bit drying , and maybe the lacrilube that i have to use at night would cancel out any dryness issues ?

      The lacrilube takes a fair bit of shifting in the mornings , leave just a tiny bit and the lashes soon transfer it to your glasses . I tried the bleph wipes and they stung like crazy and left me with red eyelids . I use the cotton bud tips fairly roughly on the closed eye lashes but barely touch the open eyelids prefering to dab it on and rely on the soap water and flannel to do the actual cleaning job . i suppose i'm using it more as a lacrilube "dissolver " really .

      The surgeon that i saw almost a year ago said that there was known actual cure and the best one could hope for was to "manage" the condition .

      Could possibly high frequency vibration be used to stimulate the flow of the oil from the glands if the openings were unblocked ? If so i take that a "barrier " or shield would have to be in place to stop the eyeball actually feeling the vibration . Is this already a treatment that is available ? I'm pretty sure that it's been mentioned on here before as a means of getting the glands moving , rather than a treatment for bleph ?

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