Success at last - my eyes are now perfect!!!!!

[Pat Baker]

I've had 3 years of misery with dry eye/mucus fishing syndrome. I've seen 2 opthalmologists, 2 homeopaths, tried acupunture, reflexology, had tests for Sjogren's, Lupus, allergies. Have tried every topical ointment, eyelid scrubbing, eye drops, cortizone, penicillin, heat pads, ice packs. My specialist said there was nothing more he could do for me. I fished mucus all day, every day for 3 years. My eyes burned, itched and ached 24/7.
3 weeks ago I visited my GP for flu, and almost jokingly suggested he take a swab of the mucus. Tests came back showing I had an infection - "acinetobacter baumanni" - commonly known as the "hospital bug" as it's usually contracted in hospitals. The only treatment this will respond to is Sulphur - I went on a very inexpensive course of Sulphur tablets (South African brand name "Purbac"), and within 4 days my eyes were absolutely perfect - no pain, no mucus, no redness. Whoooooopeeeeeee!!!!!!!!!

PS: Have been on every antibiotic possible as well - saw my GP virtually every month for 3 years, and at no point did he consider doing a swab of the mucus, which in hindsight seems the obvious thing. I have always had dry eyes, but never had the chronic pain, flaking eyelids and masses of mucus. Other sufferers should get the mucus tested as a first resort and work from there, rather than taking ransom (and often useless) medication.

[Mawsky]

Oh my goodness I thought that this was a pretty serious bacteria, i believe that it can cause some nasty wound infections, and respiratory too. Did you have any other symptoms? Were you feeling poorly, other than the eyes? I actually work in a hospital, so as you can imagine I'm very curious about this. Did you have a lack of tears? I had problems with the mucous before my eyes quit producing tears. But dont notice it now as i have so little moisture. I am so glad to hear you are better!

[Stanza]

Wonderful news!!!!!!!

[Pat Baker]

Thanks!!!! I am feeler better and better and walk around like a resurrected corpse cos I can't believe I feel so NORMAL!!! Three solid years of severe pain aint no joke!!!

[Pat Baker]

Get checked for infection if you have eye problems!!!!

I replied to you, but it doesn't seem to be showing on the page, so I may not have completed the post correctly (I'm a new subscriber to the site). In case you didn't see the reply, yes, I had vague low-grade flu-like symptoms - weariness, lack of energy, often feeling feverish, but whereas I've always been a heavy "sweater", I stopped sweating altogether for the last 3 years, even though I live in a tropical climate. My mouth was extremely dry, so I started chewing gum, and couldn't do without it. I never had mucus before the dry eyes, but have had dry eyes since childhood - simple eye drop lubricants were always enough to give relief. I have had a few medical procedures in the last couple of years, and can only guess that the infection may have resulted from a sinuplasty I had done to straigten my septum, which went well. The eye problem started about 2 months later. If you suspect you may have an infection, for goodness sake get a swab done. It may make all the difference. I must have taken every medication in the world - even steroids - you name it. I feel so normal and well now, and gettting better by the day!!!!

[poppy]

I am happy that a couple of us have found a cure. I would like to ask for a swab but how do you bring this subject up with your doctor? I can't imagine a GP doing one - even if they technically can - in Australia where I live. And as far as I know an optometrist can't do one in Australia. I've been so hurt by eye docs that it is just so hard for me to consider asking them for something, or even daring to ask a question, at my next visit in a couple of days. I've had them get angry with me and shout at me or just give me patronising looks. It doesn't seem to acheive anything when you ask the doctor to do something and they only make a half hearted effort in order to placate you.

[littlemermaid]

How can I get a swab?: Poppy, same for us, I know how you feel. It's a mystery. Any doc, dentist etc could do a swab and send it off to microbiology.

Health service hospitals have microbiology labs, private clinics use agencies. They don't hesitate for standard blood tests. Maybe it's the way ophth learn to diagnose by slit-lamp observation, leaving behind systemic disease training. Maybe they assume infection is the usual suspects, feel professionally foolish if investigations are negative. Definitely budget pressure to minimise testing in public health services. Maybe they assume antibiotics deal with any possible infection anyway; if patient comes back unresolved, think again.

GP assumes hospital ophth know what they're doing, use hospital testing, refer on to specialisms like endo. Ophth prefer to assume GP is looking after 'the whole patient', esp hormonal, not comfortable treating systemics. If GP thinks systemic causes are being overlooked by ophth, they could test or refer on. Thus dry eye patients with systemic causes needing testing get overlooked.

Also, to the ophth hospital depts, we present as chronic on follow-up and end up being seen by less experienced docs and registrars. Tetchiness = don't know. It becomes a bit of lottery to see someone who is in a position, or has the knowledge, to do a bit of lateral thinking. I was wondering if there was a young brainy ophth you have liked, and could request for future appointments?

Ironically, a swab and skin scrape is the first thing a vet does for unresolved eye problems, results in 3 days. I did ask the vet if I could bring the kids to him... he looked a bit heartbroken and said 'I know...'

Poppy: Any candidates for a pleasant yet focussed friend to go to eye appointments with you, be your patient advocate, ask a few 'innocent' questions? Or do you like Patient Liaison Service? Personally I love eye charity senior volunteers - some of them take no nonsense, and they know the docs and local service all too well.

Pat Baker: What a brilliant post, so kind of you - this post was so important for docs as well as patients.

[dijon84]

Littlemermaid: When I recently went to my GP, I asked if he could take a swab of my eye mucus to test if there is anything abnormal and he said he can't help. Please can you let me know if you have any suggestions for other types of health providers (UK-based) that might be able to help? Thanks

[littlemermaid]

dijon84: Wish I knew. Don't understand what the problem is. NHS hospital ophth clinics are under big pressure to reduce lab costs, but eg keratitis from fungal infections from contact lenses can't always be seen in slit-lamp, so somebody must be swabbing and culturing with only their suspicions to go on.

Private ophth to do a simple swab would presumably be 2 consultations + microbiology lab fee. Maybe private GP would do it for less.

Mermaid's orthodontist was so incensed by her turning up at 6m intervals with an undiagnosed red eye, he offered to do it himself through his plastic surgery business. He says the GPs would just send it off to the same lab business anyway.

We need a friend in microbiology or histopathology. Things can only get better. STI clinic swabs the eye as standard, some do results while you wait...<joke> but they wouldn't know what they're looking at.

[dijon84]

Thanks - will try the GPs again, as there's several GPs at the practice I go to that could see me - hopefully will give a different result. Otherwise might have to go private.

[donkey]

these Sulphur tablets, do you just take them like a pill or did you make some sort of eye scrub or drop? also what was the dosage?

i've read sulphur works well at reducing skin irritation as well.

[jads]

wow what an unusual case ! A great result though.

[Colin P]

Ive had an eye swab, no big drama! my private opthamolagist suggested it!.
It involved 2x oversized cotton buds, and a bit over-enthusiastic swab when youve pulled your bottom eye-lid forward for a swabbing.
Swab sticks put immediatly in capsules and went for test. Cost was £199 as i was private; results took a week to come through.

[cvowr]

Hi Pat Baker,

I didn't understand very well what you said. You did a "swab" the inside of the lower eyelid? I found this remedy in Brazil under the name Bactrim. How many pills took you? How many days? I think this does not apply to me, my dry eye is due to damage by UVC radiation. However, I could have secondarily acquired this bacteria. It's an idea though very unlikely, because in day after accident I had drastic decrease of the mucus ("eye goop" or "eye boogers") and not increase it. Today is very rare that I stand up with mucus in the eyes.
sorry my english
Hugs