New here and desperate

[dominorose]

Due to a major rail strike in France these days, I had to cancel my travel to Strasbourg and my appointment

But I still have my other appt with Serge Doan next week. Just hoping he will take time for me.

[littlemermaid]

Dominorose, I didn't realise you had amoebic keratitis 10y ago? Do the Ophthalmologists you have seen know this? Maybe they can do some more tests, eg cytology, to see if there are any after-effects - cornea specialist should know what to do. Some have confocal microscopes and can see eg unusual nerve regrowth not seen with slit-lamp microscope.

Do you think that maybe your eyes were left dry and sensitive after the infection, and something (computer, virus, allergy, meds, hormones) has brought back dry eyes? Are you able to do what you need to do to get comfortable?

Can you use CBT (cognitive behaviour techniques) with your therapist to rationalise your fears? Life is tough but we have to plan how to cope. You are doing so well - hope you can find good eye docs to work with you.

[dominorose]

Hi LM I will talk to SergeDoan about it, but yes, my opht knows it bc she sent me to the Quinze Vingt hospital ten years ago. At first I thought it could be related bc from september to march, only my right eye (the only one with the keratitis) bothered me, but now, I have problems with the left one, so I concluded it couldn't be related... :/ I don't know.

And yes I know CBT very well, I used it to recover from anorexia/bulimia

I still don't know what the real problem is. MGD is possible, but really, hot compresses do nothing (and seem to make things worse), and I can't see any clogged glands. I have tiny yellow/clear pimples on the top of my upper eyelids, just above the lash lines, and NONE of the 5 DOCS I've seen mentioned them.

[dominorose]

Two pics can you tell me what you think about it? It seems my eyelashes are WHITENING! Could it be Demodex? bleph? I don't GET it

[dominorose]

And the other one:

[Faith1989]

Looks waxy. May be demodex, but only a doc could tell for sure. Demodex treatments really help me but I am not sure if I have it.

[dominorose]

I'm lost.

[dominorose]

Quick question, please help!!

When I clean my lashes, my eyes are tearing again and feel almost "normal", just a slight greety feeling. I get more relief from this than eyedrops! After an hour or so, the dryness comes back. Is it possible that the dryness is caused by the crust in my eyelashes? I don't know how/why, but maybe?

I've searched everywhere on the forum, but it seems like I'm the only one!

[dominorose]

So, an update :

I saw Dr Doan yesterday, it was okay but very painful because my eyes were so dry and it was really hard for me to keep them open w/o blinking. He didn’t perform any Schirmer or TBUT, surprisingly. 9 months with this condition and none of the 6 opthalmologists I’ve seen tested me. Maybe that’s because they feel I am very sensitive and nervous, I don’t know.

Dr Doan confirmed what 3 other ophts told me : so ocular rosacea / MGD seems to be the right diagnosis (why am I still doubting ?).

I was so nervous I couldn’t ask him all the questions I had, but for the most part, I know what I need to know… He told me to continue with Azyter (2 courses of 3 days every month x2 per day) + Doxy 100 + a castor oil drop prepared in a french hospital. I asked him if I could try Ciclosporine, he told me it was « too soon » (BS). Next apointment is in January, I don’t understand why he didn’t ask to see me again sooner…

Whatever. I have to trust the process. After the apointment, I felt really anxious thinking about Nicolas, an older poster of DEZ, who received exactly the same treatment, and it didn’t worked for him. But what doesn’t work for one CAN work for another… I think I don’t trust my treatments enough bc of all the things I’ve read on the internet, and maybe it plays a role in my problem, I don’t know.

I’ve read everywhere you could be positive for Sjogren’s with negative SSA/SSB, and since then, I have this horrible doubt. I have Hashimoto, my mouth isn’t dry, but my hands tend to be very red in the winter… I don’t know.

I saw an allergist yersterday because I had hypereosenophilia in my last blood test. He did perform a skin prick test for dogs/cats, pollens, latex, mold, trees, all came back negative. I don’t understand why he didn’t test me for foods. Do you know any online test I could buy ?

I started another course of Azyter this morning, and this drug is definitely my magic wand. I would love to use it long term if I could, but I know it’s not possible… Just one question : if Azyter works so well on me, does it mean I’m not aqueous deficient ? I really try to find ways to identify if I’m AD without the Schirmer’s…

[kylix]

Hi, I've just read your last post so I guess you are from France (sorry if I'm wrong), why don't you visit prof. Baudouin in Paris? Or there are more really good doctors in France engaged in dry eye research.
Btw. in France (from what I read) you should not be able to get Restasis (cyclosporine A) any longer, but instead you should be able to get Ikervis (formerly known as Cyclokat), also cyclosporine A, but much better. Soon it could reach market in EU, but now it's only available in France where it replaced Restasis. It was not approved either, so it's OK. I guess good doctor like prof. Baudouin would prescribe it. If your problem is mainly allergy based, it could really help you.

[dominorose]

I don't know if the problem is allergy...

I tried to get an apointment with Pr Baudouin but it is IMPOSSIBLE to reach him. Each time I contact his asssitant, she gave me an appointment with a student, but not with him. If only Nicolas could connect, or if I could find his email adress just to know the name of his opht...

[littlemermaid]

Dominorose, are you still on any oral meds that might make your eyes dry? how are your parents coping with all this? difficult times

[dominorose]

My parents told me to be patient, that everything will be ok. They don't "see" my problem, so they think it's no big deal...
What meds could make my eyes worse?

I'm on Levothyrox, Doxy, and vitamins (Omega 3, and Selenium)

[dominorose]

Just to know: on my pics, I have some tiny pimples if you can see : are these clogged glands? When I try to express them they are "hard" and it is really painful, is it normal ?

[littlemermaid]

I think you might mean normal bumpy upper eyelids? maybe compare with a friend. No, I just wondered if you were on antidepressants or anything with dry eye side effects (see meds info and ask Pharmacist). Thyroid imbalances can make us anxious but CBT is a big help with that. But it doesn't mean it's not biochemical anxiety. My friend is hypothyroid and she gets very nervy when it's not well managed. I hope you can find peace and happiness coming to terms with and managing these troubles. Do you have siblings or cousins or aunty or grandmother to talk to?

I think Dr Doan has written about demodex and different types of blepharitis so I would be tempted to trust his judgement because of these interests (never seen him, of course). I'm thinking that although you have long-term follow-up with him, and can request an urgent appointment if needed, maybe also consider a dry-eye Optometrist near home to talk to for support.