New here and feeling helpless/losing hope

[Ireneerenee]

Hi everyone, nice to meet you

My name is Renee and I've been reading for almost a year but finally decided to join in.

I started using new contact lenses in June 2011 and after that all hell broke lose. Basically my eyes were red, burning, etc, and had 4 rounds of styes and antibiotics, and eventually I went to a doctor and she diagnosed me with blepharitis and meibomitis. She gave me Lid Care to clean my lashes, and though that has helped, everything has stayed the same.

I've so far seen 6 doctors all telling me to just "clean my eyes" and that's it.

I don't know what to do because I have read that all of you have been taking pills, ointments, etc - why aren't my doctors giving me anything?!

Should I go to another doctor and demand he "do something", such as give me some proper medication?

I have attached a picture of the condition of my eyes. As you can see it looks like clogged oil, and my eyes tear up everynight, so much so it go to my bedsheets! I also have constantly red areas of my eyes right next to my tear duct.

Can anyone shed some light on what may be wrong I am feeling really depressed about all this.

Thank you so much,
xx Renee

[HYPERHEAD]

Hi renee and welcome

I suffer from MGD and blepharitis , burning eyes,red tired eyes most days, and I have often felt helpless but don't lose hope as there is always light at the end of the tunnel, there's times when I felt very low but I realised I must stay strong commit to managing and underanding this awful condition.

I would definetly change your dr and or pay to see a decent opthamologist as my drs are pretty useless and dont really have a clue about this condition. Have you been doing regular 10 minute hot compresses followed by lid massages to extract the blocked oils, I use the steam in the shower or a hot facial steam session for 10 mins followed by 30 seconds of circular massages using my fingertips and this helps and gives temporary relief and helps to express blocked oils.

I'm seeing an optholomogist this week as I have suffered for to long now, hopefully they will prescribe anti biotics to help with the blocked meimobiam glands and infected eyelids and that what you should be receiving as well , so definetly arrange to see optholomogist asp as they will move you in the right direction.

[Ireneerenee]

Hi Hyperhead,

Thanks so much for your reply!

I do hope there is a light at the end of the tunnel as well and I hope your doc appointment goes well!

Sorry I was not clear before. The 6 doctors I mentioned in my original message, 3 of them were specialist. One seemed to smirk and laugh at me as I was explaining, they all told me to just clean my eyes.

I have stopped doing hot compresses as they tend to irritate my eyes, but I should again. My eyes look a little better after I take a hot shower.... wonder if I should take a 5 hour shower and see how it goes haha. I am contemplating going to another specialist and demanding they give me proper medication instead of sending me off with just a "clean you eyes everynight" message.

Renee

[littlemermaid]

Renee ~ Did they swab your eyes for unusual infections related to the contact lens solutions that are not bacterial? The smirking sounds familiar. I really wonder whether some recalcitrant meibomianitis will turn out in future to be caused by some unidentified wildlife, or developing allergy/sensitivity to it when it is naturally occurring or in overgrowth.

[Faith1989]

Hello All,

I have the same problem but I have blepharitis PLUS im still rebounding from redness reliever drops (after six months, still hasnt cleared). Its terrible, I used to think I was so pretty ..but now am super self conscious and had to quit my job due to the fluorescent lights! So now I'm jobless, and stuck with these stupid red burning eyes!! I wish I could give you hope Renee but mine is running out. I go back to my doctor tomorow so ill let you know what other meds he wants me to try! Hang in there, other ppl are in the same boat!

[Ireneerenee]

Hi Littlemermaid,

The smirker told me I was probably allergic to the new contacts (no really? i couldnt have guessed! -sarcasm-). He gave me stuff to clean my eyes. The only tests I was ever given was a vision test - they seem to think that if my vision is OK, everything is ok.

So frustrated with them. I don't know if I should bite the bullet and try one more specialist and specifically tell them that i want proper medication, lid scrubs, warm compression, etc, is not helping. I have heard great things about docicyline (spelling). I so badly would like to try SOMETHING, anything!

Thank you Faith for your message as well. I work in the beauty/fashion industry so me not wearing my contacts and eye makeup has really given my self esteem a big blow. I too have been feeling self conscious, also at the redness and just glasses in general. I never knew I was so vain until this happened, haha! I so miss my makeup. I hope it goes well to the doctors... fingers crossed for you xx

[littlemermaid]

I am thinking some help with the doc-shopping might be useful (doxycycline) - maybe ask Rebecca or post up a location. They sound like non-starters so far.

[Faith1989]

Funny thing Ireene is the job I quit was with a makeup company..(I WAS a really successful makeup artist) so this horrific condition has affected my life in more ways than one. I know your feeling desperate, because I do to. I would give anything to wake up one day and have my glamorous life back.. sometimes I ask what I did to deserve this! Until about six months ago, I was going to apply to a really prestigious makeup academy because it was my passion, which got taken away from me! I work across from the MAC counter (at the Clinique one) and I just am so jelous of the girls living my dream that I can't have until I'm better. Im going to give you a list of things/meds I have tried... maybe it may help you?

1. Warm Compresses/Lid Scubs - I mean they help to a point but not enough
2. Arex (steroid drop) - Helped at first then stopped working
3. Zaditor (anti-allergy)- Helps to a point but making my dry eye worse
4. Artificial Tears- help for about 2 minutes
5. FML Forte- Helped with the redness but made the soreness worse (couldnt stand the side effects)

I'm going to ask my doctor about Lotemax/Azasite..I've heard good things about both? Has anyone tried either? Did it offer any relief?!

[LisaLis]

Hi Irene, welcome to the group! Some dr.'s really can be jerks. I don't care if they have all these degrees. It is frustrating. I would see a different doctor or call one of them up that you saw and tell him you are in pain and would like to know if there is anything you can use. You have a right you paid them. I went to 2 dr.'s one on Long Island a really impressive background. She loaded me up with drugs. It was kind of scary and nothing working. The only drug that I thought helped a little bit was azasite but now I'm not so sure. I think it brings down some of the inflammation at first but then it really seems to dry out my eyes. I went for a 2nd opinion with Dr. Latkany and he told me to use nothing but warm and cold water soaks and stop the meds. I am diagnosed with occular rosacea/blepharitis. He told me get allergy tested. I am also seeing a accupuncturist who is telling me that my insides are no good. Thick coating on tongue means a toxic body. He believes as soon as he heals the inside and the coating goes away my eyes will be better. He believes the problem is not the eyes but coming from the inside. Keep your chin up, I know its hard.

[Tinkerbell3]

Hi all.

Hi I am a newbie too, please take a look at the Ocular Surface Center, Miami in regard to their research on Demodex (this has probably been discussed already) but it has certainly reduced the time it takes for me to get a flare up of Bleph, MGD under control. I now use Tea Tree oil and almond oil in extremely tiny amounts and wipe with a cotton bud along my eyelashes, up my nose, and along my eyebrows as these tiny mites love hair. They can cause inflammation and certainly blepharitis.

I am also a Nurse and was a Practice nurse for 20 years. One thing I would say is that most GPs are 'generalists' they do not specialise in any particular area and so quite often if it is a bit unknown or specialised then they do not have a clue. Also, same with some Consultants unfortunately. However, just a word of caution re GPs , they can be a funny lot, and you never know when you are going to need them, so I have never relied on one for this condition, but always keep him sweet it is good advice.

[eyemech]

I have been treating patients with demodex for years. If you look at my website...maybe I am not allowed to mention that..there is a link to a news story where I show you how to use the tea tree oil, If you do not use it correctly you can really make yourself miserable.www.houstondryeyeclinic.com
See media and you can see exactly how to apply it. Straight tea tree oil is too strong to put straight on the lids. I recommend mixing it with tea tree shampoo. Does it help? Yes, but only for those who really have demodex. Note: Everyone has demodex. It is a naturally occurring skin mite. It becomes a problem only when you have an over abundance of the little devils. I actually pull a lash out and look at it under a microscope. If there are a bunch of mites on the lash, this can explain the problem. I just thought I would throw this in to help those looking for an answer. Dry eye is a pretty complex issue.

[LisaLis]

Hi Dr. Panzer, I saw your video. I'm starting to wonder if maybe I should try this treatment. I had 2 dr.'s look at my eyes. One, put some drops in first (I think its flouricine) looked with there machine(I think its called a slit lamp). The other just took a look. Is that the accurate way of diagnosing by just looking with a slit lamp?
When you use the tea tree oil mixture how many times a day do you use it and for how many days or weeks? Do I just apply on the ends of the lashes or near the base(skin)?
Now I'm starting to wonder about this, maybe I should ask my dr. about the demodex possibility.
thanks,
Lisa

[Hopeful2]

Hello Dr. Panzer and thank you for the link to the demodex video. I do get clumps of something stuck to the base of my lashes. I guess it could be demodex. I have also noticed the odd black speck around my eyelids. Could this be demodex related? Also, does the demodex mite live in the hair as well? Would this area be treated the same way?

My doctor examined my eyes with a slit lamp and based on this examination decided that demodex are not a problem for me. Would you be able to estimate how many of your dry eye patients are sensitive to the mites? How many of these patients find relief in the demodex treatments?

Thanks so much for the information.

[Ireneerenee]

Hi everyone,

I am so sorry for being MIA, I have been quite ill and then when I get back to work, it's double to catch up!

During this time I have not thought about my eyes one bit... and you what... they kinda look slightly better. I wonder why that is. :?

Faith 1989... I am so sorry for all the hardship your eyes has brought you. It made me so sad to read your post... do they look so bad that you think it will hinder your job? For me it's just the fact that I can't wear makeup/contacts. They are not red or oily (anymore), so they look pretty normal. I have rid myself of all medications and only do a lid wipe once a week because it tends to irritate the eyes. For some reason it seems the less I touch my eyes, the better it looks.

How did your doctor visit go? Oh I hope you'll still get a chance to read this!

Renee

[Ireneerenee]

HI Lisa, thanks so much for writing. I am curious about what the acupuncturist is saying... what does he mean by "insides are not good"? I have had many health problems other than my eyes so I also do wonder... for example I have trigger finger (inflammation of the finger muscles) that hasnt gone away in 2 years. It seems my body just cannot "cure" itself from inflammation; maybe something is wrong on the inside too... Hmm.