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I'm glad that I've found this site, I didn't know there ...

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I'm glad that I've found this site, I didn't know there were so many people who suffer from blepharitis. I was diagnosed with it a couple of years ago after I had a bad eye infection. It's nasty, I have a constant feeling of grittiness in my eyes and really bad itching. Then I get blurry vision which is a real pain, some days I can't drive. It's so frustrating! If I manage to get the symptoms under control it does go away for a few months. But if it gets bad I feel like somebody has punched me in both eyes, and even the bathing techniques are painful. Why isn't more research being done into this condition? I read somewhere on a forum that a guy was told by a doctor, the reason for lack of research is because the symptom doesn't cause blindness. Pretty ridiculous really considering some of the advances of science. They can clone sheep, put man on the moon and create designer babies, but they can't help an eye condition, except to tell people to wash it with Johnsons baby shampoo!

[i:1d8cdd7693]This message was automatically imported from the original Patient Experience[/i:1d8cdd7693]

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  • Guest
    Guest

    Posted

    I'm glad you've found this site. I've found it quite useful too. Sadly though, even though my doctor tells me it's quite a common affliction - I've yet to actually MEET someone who has it! Like someone else has said, when you say you have inflamed eye lids, they say "Well - drops will soon sort that out" - but of course drops alone don't do a thing. And when you try and explain the inconvenience of the lid cleansing and hot flannel treatment, no one is particularly interested. You could be right. It all sounds pretty pathetic - which is probably why no one has done any research and come up with a cure!

    Sould we form a group?

    Write to our MP?

    Meet for support?

    Open a web site to share experiences?

    Anything to take my mind off the misery!

    Carolyn

    [i:cc38ceb0c1]This message was automatically imported from the original Patient Experience[/i:cc38ceb0c1]

  • jenny_74
    jenny_74 Guest

    Posted

    "I read somewhere on a forum that a guy was told by a doctor, the reason for lack of research is because the symptom doesn't cause blindness. Pretty ridiculous really considering some of the advances of science. They can clone sheep, put man on the moon and create designer babies, but they can't help an eye condition, except to tell people to wash it with Johnsons baby shampoo!"

    Its  been a long time since you posted this...but I read it just now and I totally agree with you and love the way you put it...

    Wish you well

    Jenny

    • lynda79
      lynda79 jenny_74

      Posted

      Dear Jenny,

      Just found out today that the UK wipes have .3% Benzalkonium Chloride in them.

      I used the US ones with Benzethonium Chloride at only .03%. That is a huge difference.

      Please use the safer ones. It does explain why Honjon went down so fast but it is not safe around the eyes.

      Sorry, I did not know this before. Trying to get the word out to order on-line.

      Thinking of you,

      Lynda79

    • jenny_74
      jenny_74 lynda79

      Posted

      Hello Lynda,

      I follow everything what someone says on the forum as I get an e-mails on my phone.I appreciate you addressing it to me personally as you did to everyone else too...

      When i first started to look for the wet ones I ordered some from England and when i received i realised they contain benaalkonium chloride.In the meantimeI found e bay seller from USA who sells the red pack ones with bezenthonium chloride and ordered them insted.So I was only using red ones while the blue pack I first bought is in my cupboard....After I read your last few messages I went to check what is the percentage of B:C inside and all I could find was this: BENZALKONIUM CHLORIDE /0.0975 G IN 100G OF DOSED LIQUID/

      Well, I am not pharmacist to understand what it means, I am glad I didnt usethem on my used of potentional higher dose you warneed us about..

      They wont be wasted of course, I will use them on my journeys or so...

      Thank you dear Lynda for letting us all know...

      Let me use this opportunity and tell you that my eyes are excellent and at the moment I am cleaning them only once in the evening..

      Will keep in touch

      Take care,

      Jenny

       

    • lynda79
      lynda79 jenny_74

      Posted

      Dear Jenny,

      I am so glad you got the info so fast. I wondered how Honjon could go down so fast. Not sure what that means but I will find out from a Dr. how much that is. I worried that I had to get that info out. I hope people see this.

      Thanks for getting back to me.

      Thinking of you,

      Lynda79

    • jenny_74
      jenny_74 lynda79

      Posted

      Dear Lynda

      I also went down very fast and i am still using it as an extra precaution...there was simply no need to use it 4 times for a month and then 3 etc...Although we have or had the same condition, there are some differences in symptoms and severity...Some people only had it for few months and some for years.. some people have more problem with glands or sebhorea what dont seem to be the case with us...

      Lots of people quit smoking but it is chronical thing as this condition so they cant say that they are clean after a month or so...i hope i will visit this site in a year and say that i am still symptom free...Dont get me wrong...i am thrilled now, my eyes are clear and they dont itch...the real test will be when i stop using them for good..and see what happens...sorry i simply have to be slightly reserved and allow the time to do the thing....although i am very optimistic..I think this is an excellent therapy but it is still "under research" sort of..And we voluntier in it..

      Dont be worried about Honjoun.The wipes he used cant be worse than antibiotics..Antibiotics are legal thats al

      l..And symptoms reoccur soon after you use it...so the question is would you rather  take a legal drug for nothing or something alternative what actually helps?

      We all made choices here....i am glad i did...Maybe one day wet ones get official in treating this...Or something slightly preformulated..You need to go further with this and I know you try to.I hope somebody do the study in the future and give people  " medically accepted"

      Treatment.

      Lol

      Jenny

    • lynda79
      lynda79 jenny_74

      Posted

      Dear Jenny,

      Thank you for such thoughtful words of encouragement.

      I just e-mailed the Dr. who is interested in the antibiotic angle of this I presented to him.  I asked him to explain what the info was on the back of the UK wipes that Eileen gave me. Should know in a day or so.

      Thanks ever so much,

      Lynda79

    • jenny_74
      jenny_74 lynda79

      Posted

      Dear Lynda,

      Hope you remember me...

      My Bleph seems to be coming back! It itches sometimes and I am conscious of my eyes especially the edges...I must have re-infected myself or I had very poor hygene.I was completely symptom free for approx 3 months and I foolishly didnt use any extra things such as wipes, drops etc

      I started using wet ones again once or twice a day...

      I do think that reason I got it back is not in short period of use, it is my sensitivity to bacteria or re-infection or both..In the meantime I stopped having probiotics and omega 3 daily ...

      I was careful with make up and was using mascara wands...it could be the water after heavy rains, could be the money I am in touch at work....

      It is not bad at the moment but need to prevent it .

      Any suggestions, advices??

      I was enjoying my symptom free life, working hard this summer but reading comments from time to time.

      Regards from Croatia, Dubrovnik

      Jenny

    • mary72917
      mary72917 lynda79

      Posted

      Hi, Linda,

      have just read Jenny's reply to you. I'm using the large pack, blue Wet Ones.

      o.o975g in 100g of dosed liquid . What is the problem with these? I'm very confused. Thanks so much for all your imput and helping so many people,

      so clarification would be great regarding these wipes.

    • lynda79
      lynda79 jenny_74

      Posted

      Dear Jenny,

      Of course, I remember you. You and Jeanette will always have a special place in my heart. 

      My daughter reminded me that one time it did come back when I tried to use mascara the normal way. I use 1 wand now and use it on both eyes but do not put it back in the mascara. It was a trigger for me.

      A washcloth could have bacteria on it from using it on another part of the body then the face by accident. I've done that. I then used an antibacterial soap on my eye area. Talk about being afraid.

      Yes, money is really dirty. You can carry wipes with you for your hands. They can be the alcohol ones too. Anything that would help to clean the hands. It seems we touch our eyes often and do not realize it.

      I jumped on mine but it did not take as long to get rid of if just came back. A day or two of using the wipes did it. You can try that antibacterial hand and body soap once or twice a week. I keep a bar just for my face now in the cubboard.

      Remember that dry eye doesn't wash out the bacteria like normal eyes do. Dr. told me to put eye drops (no preservatives) in my eyes every 1/2 hour if watching TV or computer. Like I can do that! I do give it a try.

      I am working on that.

      Let me know how you are getting along with this and get on it right away. You may just have to be a hand washing person. Who cares if someone says anything. Eyes are more important.

      Your friend,

      Lynda from California

       

    • lynda79
      lynda79 mary72917

      Posted

      Dear Mary,

      I used the US wipes and they have .3% Benzethonium Chloride in them. Now, Honjon used the ones you have mentioned. His comment that these helped him to kill it made me do research and realized that Benzalkonium Chloride (in the blue wipes) are Quats like Benzethonium Chloride.n

      The only thing is I do not know what the difference is between the two. For example, the blue ones could have more of one thing and less of another. 

      One girl in the US said she used a store brand and it had a lot less of the Benzethonium Chloride in it. She said they burned her eyes. I told her most do not have that reaction and she should try the red hand wipes, Wet Ones.

      Some are getting them online.

      Bear with me, I took the survey on this site and could not read the school system. There is a language difference. The same in the pharmacy or drug department (chemist) too.

      Sorry I cannot do the comparing that you need.

      If the blue ones are too harsh give the red ones a try. Read Honjon's info too.

      Hope this helps just a little,

      Lynda79

    • jenny_74
      jenny_74 lynda79

      Posted

      Dear Lynda

      Exactly! You have that special gift to say right thing for everyone.

      I never use anything special to wash/ dry my face.Ok it is always a clean towel but no washcloths or facewash...

      I dont put used mascara back inside but what I should is properly clean my eyes after make up.After removing make up i should extra wipe my eyes with something antibacterial.I do sometimes but obviously I have not been consistent.

      Also I noticed in previous years that it was getting worse in cold wer weather??

      I am not as worried and afraid as i was before finding out about this site.I am using wet ones once or twice a day and it helped...I will continue until I kill it but I can see already that it wont take long.

      Let the other people see that this is chronical and if one doesnt accept new habits or become uncareful, it can come back...

      As i said, no huge deal.We have the experience, knowledge and this web site...

      Thank you for everything.

      If there was a forum reward, you should get one!

      All the best to you and your family

    • lynda79
      lynda79 jenny_74

      Posted

      Dear Jenny,

      Don't know if I mentioned this before but staphylococcus is on our eyes normally. Perhaps with Blepharitis, we cannot get rid of it with the dry eyes.

      That is why keeping the eyes and face clean are important. The daily shower and then taking off the mascara to keep eyes clean. If your eye tingles at all, perhaps, you could just use antibacterial soap (closing eyes and rubbing lashes) to keep everything under control (after you kill it again).

      The wipes are drying and they are not for daily use, just to kill the Blepharitis. Like I mentioned for me it is just a couple of times a week that I use that soap on my lashes. You may want to use it daily for a week or so or every other day. See what works for you. Plus, it could help to cut down the amount of time you need to use the wipes again.

      Hope this info helps. I think about things for a day or two and then remember different things I have done and why. May not work for everyone but the antibacterial soap will do something more then baby shampoo.

      People who are allergic to the wipes could try and use that to cut down on the staphylococcus on their eyes. May not kill it but sure would help.

      Sending love,

      Lynda

    • jenny_74
      jenny_74 lynda79

      Posted

      Hi

      You are right as always.I know there are lots of products out there but which anticaterial facewash you dou use? Solution called blephasol could be also good to be used on daily basis as it is specifically designed for this condition..I got it once from one of british on line pharmacies...

      I think I have to visit one of the pharmacies ASAP...Get my cleansers, eye drops etc..

      Best,

      Jenny

       

    • lynda79
      lynda79 jenny_74

      Posted

      Dear Jenny,

      I use a bar of antibacterial soap, like you woud use in the shower. The only difference is I keep one just for my face. I don't use it everyday on my lashes and face.  If I have done something stupid which happens occasionally I use it or justt a couple of times a week to be safe.

       I use a Neutrogena natural pump thing to take off my mascara because my daughter got it for me. I don't use water safe mascara either. I use the kind that can come off with just water.

      Hope you are well soon.

      Your friend,

      Lynda

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