Demodex/autoimmune...but why??

[jthomp]

Demodex….but why??

So, I recently decided that Demodex is causing the worst of my problems. I have so many pieces of this puzzle to try to put together (just like everybody else here). I’m just so frustrated and as I was researching on how to treat the Demodex with tea tree oil I started to go in a different direction. I also have ocular rosacea and MGD (left eye only). I am sure I have an overgrowth of demodex because I have the cylindrical dandruff around my lashes, lash loss, misdirected lashes and lots of inflammation. So here are some of my many questions: WHY do I have an overgrowth of demodex? Is it because I have a decreased immune system? Is it because I have an autoimmune disorder? Is Rosacea the autoimmune disorder or did the demodex cause the rosacea? Or did the rosacea cause the demodex? Or do I have an autoimmune disorder that caused the rosacea??!! Who knows right??

DEMODEX:
~I feel like I need to treat the DEMODEX for sure. WHAT’s the best way to treat it? I have tea tree oil from Desert Essence (100%) and I’m mixing that with castor oil. I use castor oil around my eyes and in my eyes because that’s the ONLY thing that works for the dryness(I am worried about it being toxic to my eye). I have tried Cliradex, but it is very irritating to my eyes. Does anyone know if this mixture of TTO and castor oil will work?

DEMODEX question: If they live off of oil, will the oil I use make them worse? Or is it just sebum they live off of? I was thinking the castor oil would smother them on it’s on, but it hasn’t.

AUTOIMMUNE disorder:
~I have had a negative ANA (saliva) and have had my thyroid checked in the past, so how do I find out if I have an autoimmune disorder and which one it is? My other systemic problems are fatigue and interstitial cystitis, but no joint pain to speak of. Sjogrens was also negative.

HOW would I treat an AUTOIMMUNE disorder anyway? DIET & increase immune system….how do I do that and which diet? I take vit D3, vit. C, Taurine, NAC, Omega 3, ACV, probiotics, EPO and biotin.

~ Since INFLAMMATION is a big part of my problem, I was trying the anti-inflammatory diet, but it is pretty hard for me. I hate not knowing EXACTLY what is going to help so that I can focus on that one thing. And not knowing for sure if it’s the demodex, rosacea or MGD causing the inflammation.

SO sorry for the long post, but thanks for letting me share with people who understand my pain and if you can offer any suggestions I would truly appreciate it

[littlemermaid]

Jeanne, Just to let you know we are in exactly the same boat here ~ were you on any oral meds or using creams on your face before this started? Are you aware of any specific hormone or nutrition problems? We've done well with 1:50 organic tea tree shampoo:warm water as an eyelid cleaner. We used it 4wk then weekends only then off. Maybe we should think of 'rosacea' as hypersensitivity. We've done better gluten and sugar-free. Do you have any skin signs of rosacea? Is it still just one eye? Are you doing OK with the painful cystitis?

[Faith1989]

I feel like I may be in this category too. My optho thinks I have a rosacea issue, although super mild on my face (my cheeks get slightly red sometimes, but all in all my face looks clear). My GP said he disgnoses rosacea daily, and I do not have a trace of it. My naturopath thinks I have an autoimmune issue causing my problems. Regarding demodex, when I use TTO scubs, my lids express clear oil within days and the redness goes down. Diet has also played a major role, sugar (even fruit) is an issue for me, but usually one peice a day is okay.

I would google the autoimmune paleo diet, but be careful about the fruit. Most sites say 10g a day is okay. If I eat mostly meat, and veggies my symptoms go away. Once I cheat, my lids turn bright red within days. I do not know if this is because of rosacea or autoimmune or both?

Also, I forgot to add, mine is just ONE eye too. The left one is great, even normal, the right is the one that gets inflammed.

Mystery.

[jthomp]

Littlemermaid,

I have taken Oracea and used metrogel. Neither one seemed to help much. I wish I could use Metrogel on my eyelid and in my lashes. I'm 46, so I do have some hormonal imbalances. I use some essential oils and Evening Primrose which have been helping. I do feel like gluten and sugar are problems for me (and my weakness). I have rosacea on my cheeks, that's where it started. I really do think it's our diets that are causing the auto-immune disorder and the pesticides can cause a hormonal imbalance as well. It's just so difficult not to eat what's available.

Yes, I do think of rosacea as being "hypersensitive" to everything. It's so unpredictable and I just can't figure out all my triggers and it's never consistent anyway.

Faith, It's my left eye only, It seems like if it was an auto-immune problem that it would be both eyes? The dr. says that it is both eyes, but only the one causes me all the problems. That's why I think it's the demodex that are just really liking that eye for some reason. I wonder if I have more sebum on that eye. I need to know how to decrease it I'm always thinking about this and what I should do. There's got to be an answer that's easier than what I'm doing...besides it's not working anyway.

I'm wondering if I should get a prescription for Ivermectin and if that would work.

Thanks for your feedback

[littlemermaid]

There is hard research coming up now that changing the gut microbiome eg with diet or antibiotics improves autoimmune eye inflammation but no one quite knows where we are going with this yet ('Altering the gut microbiota ameliorates experimental autoimmune uveitis', Yukiko Nakamura, poster 2497 Immunology/microbiology, ARVO 2014).

Ivermectin may be a sledgehammer to crack a nut if a TTO shampoo regime works - we do ours maybe once every 3m. Plus, by definition, demodex is 'normal' so it's about keeping things in check rather than eradication. Have you found an ophthalmologist or optometrist who knows how to check for demodex overgrowth around the lash bases? - more of them actually know how to do this now. As you say, it looks like bugs get more opportunistic when our immune system is down, and also rosacea people are sensitive to the bugs' products.

There is also hard research coming up now on metabolomics - genetic markers, serum metabolites and dry eye disorders ('A metabolome-wide study of dry eye disease',
Jelle Vehof et al., poster 334 Dry eye disease, ARVO 2014). This might start to answer some of our chronic MGD and hormone questions.

We know there's a problem with lipids, sebum and meibom so maybe we need to look at diet before fish/flaxseed oils help http://www.ncbi.nlm.nih.gov/pubmed/23747164

On demodex, Scott Hauswirth OD at ARVO 2014 http://www.healio.com/optometry/corn...ry-eye-allergy 'demodex infestation can be asymptomatic'.