Crazy Dry Eyes...

[premedboy]

So I've posted my story before on here. In summary, after an eye infection about 5 months ago, my eyes have been dry, irritated, and red. I've been to 14 doctors, took tobradex, lotemax, azasite, besivance, doxycycle, and nothing worked. I went to an opthamologist today, and he thinks it's Sjrogen's syndrome due to me having an autoimmune disease 9 years ago. However, I truly believe that it isn't that because WHY would it start right after an eye infection? I don't get it.

I did a shirmer's test and it was 0 in my right eye, and 3 in my left. My tear breakup time is less than a second. He wanted me to start restasis and start taking hydroeye. I've been taking thera tears nutrition so far and it hasn't really helped yet.

So, first question, do you agree with his diagnosis, or could it be that the infection maybe damaged either one of the glands, or the goblet cells?

Second, is hydroeyes good? Or is biotears better? Or is it okay if I take both at the same time?

Any help would be appreciated.
Thanks!

[premedboy]

Oh and I'm 20 years old.

[y-gwair]

Sorry to hear your eyes are so bad.

If you have already been diagnosed with an autoimmune disease, then it's quite likely to be playing a role in your eye dryness. Autoimmune diseases tend to have a flaring/remitting pattern, and flares can be triggered off by things like viral infections (sometimes flares can also be misdiagnosed as infections too); they can disappear for a few years, then flare up out of the blue again. It isn't just Sjogren's syndrome that can cause dry eyes, and dry mouth; sicca syndrome can accompany other connective tissue diseases, and dry eye can also be an early symptom of thyroid eye disease/hypothyroidism.

If the cause is autoimmune in origin, then you really need to get the exact condition correctly diagnosed; also have your thyroid checked out (thyroid antibodies as well as hormone levels), as thyroiditis often occurs secondary to other autoimmune conditions. Immunomodulatory medications can sometimes help damp down inflammation in glands, especially if you are young and catch it early enough in the disease process, but you really need to see a good rheumatologist to get to the bottom of things.

Good luck.

[premedboy]

Hi:
Sorry to hear you are having so much trouble with your dry eyes.

The drugs you have taken do tend to induce dry eyes. Sounds like both your lacrimal and mybomian glands have shut down. Eye drops provide temporary relief but can cause eyes to become drier over time.

Hydroeye and TheraTear capsules are very similar. They are oily in composition and targets to increase lubrication to your eyes. I don't know about Biotears - which seem to use ferritin as a differentiator.

It would be helpful if you look into getting your tear secretion glands to restore their normal cell function and hopefully return to normal soon.

I decided to go with biotears for now, and if it doesn't work, then try hydroeye.

How is it possible to restore function to my tear secretion glands? Is there any kind of drop or oral medicine that targets and restores these glands?

ygwair:

Here's my thoughts on this. I think that I have always had low tear production (the aqueous part), but these symptoms appeared right after an infection, which leads me to believe that either the mucin or oil part is deficient, which became overwhelming for my eyes to handle. It just does not make sense that it happened right after an eye infection (I got it from my contacts; went on a trip and did not clean them for a couple of days and I am 100% sure it was an infection as I had a fever and a sore throat at the time). What do you think?


Thank you so much guys!

[y-gwair]

I lived with dry eyes/poor tear film for 25 years, that doesn't mean that I don't still have really bad flares. Tear chemistry can change in response to pro-inflammatory substances during a flare, causing inflammation in the tissues in the surface of the eye, which then worsens dryness, which then causes more inflammation and so on in a negative feedback loop.

It's possible that a simple infection disrupted what was already a bad situation (and you could only really be 100% sure it was a bacterial infection if a sample had been tested) but you still need to check the underlying problem if you have an autoimmune-related dry eye. Dry eye problems are very complex and difficult to treat (particularly when there is also systemic inflammatory disease going on) and you need to fight it on as many different fronts as possible to get on top of it.

[premedboy]

I lived with dry eyes/poor tear film for 25 years, that doesn't mean that I don't still have really bad flares. Tear chemistry can change in response to pro-inflammatory substances during a flare, causing inflammation in the tissues in the surface of the eye, which then worsens dryness, which then causes more inflammation and so on in a negative feedback loop.

It's possible that a simple infection disrupted what was already a bad situation (and you could only really be 100% sure it was a bacterial infection if a sample had been tested) but you still need to check the underlying problem if you have an autoimmune-related dry eye. Dry eye problems are very complex and difficult to treat (particularly when there is also systemic inflammatory disease going on) and you need to fight it on as many different fronts as possible to get on top of it.

I got tested for ana and any autoimmune or inflammatory markers and they all came back negative, that is why I am VERY skeptical that this is an autoimmune issue. The infection was bacterial and viral in my opinion (Based on the vast amount of information I learned thus far in my molecular biology track, which I will take to medical school soon enough).

Please let me know what you think is the problem without autoimmunity in the situation.

Thanks

[spmcc]

How is it possible to restore function to my tear secretion glands? Is there any kind of drop or oral medicine that targets and restores these glands?

From what I understand, Restasis is the only FDA-approved med to increase tear production.

[Michael2]

oh my god, how does someone live with something like this for 25 years? ive been suicidal and severely depressed and its been 12 months. every day i cry that ive lost everything important to me. its posts like that that have made me suicidal. its posts like that that have made me extremely suicidal

[Suzie M.]

From what I understand, every case is unique and what works for one person may not work for another. I joined this group because I believe if we share knowledge, we are far more likely to resolve our respective issues. If you want to talk, I'll give you my personal email. I consider it quite serendipitous that I stumbled on this site while looking for an answer. Hang in there. We can fight this together.

[y-gwair]

I got tested for ana and any autoimmune or inflammatory markers and they all came back negative, that is why I am VERY skeptical that this is an autoimmune issue. The infection was bacterial and viral in my opinion (Based on the vast amount of information I learned thus far in my molecular biology track, which I will take to medical school soon enough).

You said you had a pre-existing AI condition, and that your eye doctor has suggested you look into Sjogrens; if you are mistaken about that, fine; obviously it's some other problem, so good luck with sorting that out.

For the sake of other people reading this thread who may be in a similar situation, there are LOTs of different markers for autoimmunity; without listing them specifically it's difficult to know if they were all included. For the record 'all' of mine came back negative until the rheumatologist asked for additional ANA and various immunoglobulins to be tested, upon which it transpired that my GP had misinterpreted speckled ANAs as being negative, and that IgG was elevated with hypergammaglobulinemia. Most don't even think to test for anti-thyroid antibodies, even though thyroid autoimmunity alone can do a pretty good job of mimicking quite severe Sjogren's Syndrome (including musculoskeletal manifestations) with none of the inflammatory markers specific to true Sjogrens; I can point you to an excellent research paper by my rheumatologist if you don't believe me.

You may have learned a lot in your molecular biology module; many hospital consultants have learned far more but still fail to diagnose conditions accurately if they don't fall within their narrow field of interest which is why we have to be so vigilant and proactive as patients. Correct diagnosis in these matters is important, if only to develop a coping strategy; some types may be self-limiting and need temporary medication to damp down flares; others are progressive and need more aggressive, long-term treatment which is more effective if started early.

[willwork4tears]

I completely agree with y-gwair's posts. I have Sjogrens and I'm also a PhD Immunologist and I completely agree with the advice given about the infections triggering flairs and the need for a complete rheumatological diagnosis.

I've had over $5000 worth of blood tests done for autoimmune disorders and they ALL came back negative. I've had ANA/RF/SSa/SSb run multiple times - always negative. However, my salivary gland biopsy (gold standard for diagnosis of Sjogrens) was positive. So the blood tests are not the end all be all for diagnosis. You definitely need to see a good rheumy if you really want to get to the bottom of it.

[Guest]

oh my god, how does someone live with something like this for 25 years? ive been suicidal and severely depressed and its been 12 months. every day i cry that ive lost everything important to me. its posts like that that have made me suicidal. its posts like that that have made me extremely suicidal

It all depends on exactly what "something like this" feels like... from your post, I assume yours is still not controlled enough that you can treat it and forget about it... but eventually, I think most people either figure out a way to get back to normal, or at the very least, get their symptoms well-enough controlled that they can function normally enough to have a good quality of life. So don't lose hope... keep searching for answers... you'll get there...

[Guest]

I've had over $5000 worth of blood tests done for autoimmune disorders and they ALL came back negative. I've had ANA/RF/SSa/SSb run multiple times - always negative. However, my salivary gland biopsy (gold standard for diagnosis of Sjogrens) was positive. So the blood tests are not the end all be all for diagnosis. You definitely need to see a good rheumy if you really want to get to the bottom of it.

Did you have to push for all of that testing? It's great that you got to the bottom of it finally!

I assume because you're young the first assumption of many docs would be that you didn't have Sjogren's... seems to me that it's normally older women that get diagnosed?? I would assume this assumption would be common for someone like premedboy also... not only young, but male!

[FWM]

oh my god, how does someone live with something like this for 25 years? ive been suicidal and severely depressed and its been 12 months. every day i cry that ive lost everything important to me. its posts like that that have made me suicidal. its posts like that that have made me extremely suicidal

i know what you are talking about

[premedboy]

Did you have to push for all of that testing? It's great that you got to the bottom of it finally!

I assume because you're young the first assumption of many docs would be that you didn't have Sjogren's... seems to me that it's normally older women that get diagnosed?? I would assume this assumption would be common for someone like premedboy also... not only young, but male!

Yeah that's what I thought. But the fact that I've had polymyositis about 9 years ago makes it much more likely that it's sjogrens, even though my saliva glands are fine and I experience no dry mouth at all. I haven't had any symptoms for about 7 years though and my ana and all inflammatory markers are fine.

I mean I'm a very healthy male, lift weights and I'm pretty active, so this eye problem really is weird and it all started from an infection so I was inclined (still a) to think this dry eye problem is from that.

So aside from sjogren's, what else could it be?