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Thread: Hoping to be on the Road to Recovery

  1. #1
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    Default Hoping to be on the Road to Recovery

    On Saturday I was breaking out with papules and pustules more than usual. So many bumps all over my face, I was/am so fed up. My derm had put me on Protopic and Tacrolimus, but now this wasn't working and my PPR was getting worse. So frustrated, angry (prob not good for my rosacea lol), and just plain tired!

    For just over two years I've had horrible PPR which began a few days out of the month right before my cycle started and then one month it decided to never go away. I had to do what the doctors told me not to do: STEROIDS. Specifically, betamethasone. At least my skin was beautiful and clear again while I waited for a diagnosis. As time passed, derms couldn't tell me what what wrong with me from just pictures, and I didn't want to stop steroid use because I would look horrible! To make a long story short(er), I found a new derm who put me on Minocycline for three months and Elidel. He said when the three month course of Minocycline was completed we would look at treating the premenstrual "acne." He said that the long term steroid use will cause me PPR. He said no more steroid use. I reluctantly complied. He said my face will go through steroid withdrawal and I will break out. He was right. My face exploded here and there and I have looked awful for almost three months. Until today.

    So anyway, on Saturday I just couldn't take it anymore and hit the computer for several hours of research (I shoulda done this two years ago). Most websites don't offer much information, it seemed as though Rosacea and PPR were a mystery with no definite cause. Don't eat spicy foods, dairy, avocados, tomatoes blah blah blah. Don't get angry, emotional, drink wine, coffee blah blah blah. I went off dairy and almost died from not being able to eat my most favourite food in the world, cheese! And, I'm sorry but I cannot give up coffee or red wine!!!

    Then I thought to myself, hmmmm... recently I was diagnosed with corneal neovascularization, I wondered to myself if that is related to Rosacea so I started another Google search. Low and behold there seems to be a relationship between Rosacea and corneal neovascularization. Then, what causes neovascularization? Oh, Demedex mites is a possible cause? Then I found the link between the Demodex mites and Rosacea. Interestingly, spicy foods, avocados, tomatoes and a bunch of other food items the doctors tell you to limit when you have Rosacea, cause blood vessels to dilate which heats up the skin and can cause flares. It just so happens to be that hot skin is the perfect place for a Demodex mite party...and of course proliferation.

    Btw, here's a really interesting peer reviewed article from the Journal of Medical Microbiology: http://jmm.sgmjournals.org/content/61/Pt_11/1504.full
    And, from the British Journal of Ophthamology: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1772908/
    Another interesting research article I found, but I can no longer find the download link and most sites only off the abstract, "Papulopustular rosacea, skin immunity and Demodex: pityriasis folliculorum as a missing link" by F.M.N. Forton This was published in the Journal of the European Academy of Dermatology and Venereology

    I gotta ask one question. What is it with doctors? What's wrong with them? Okay, they don't care, they have too many patients and... right, they don't really care. I cannot believe that the answer to my PPR was sitting in my medicine cabinet all this time and no doctor was able to tell me about the likely cause of Rosacea: Demodex mites and that Tea Tree Oil will kill them. Worst case scenario is that I'll be loading up on Kwellada as I have read that Permethrin will kill them but I'd rather do natural first before applying a synthetic topical.

    On Saturday night I loaded the tea tree oil onto my face, washed my hair and body with tea tree shampoo, changed the bedding, bathed the dogs and went to sleep. Two sleeps later all of my bumps are gone, but I have a bit of redness and irritated skin from the non-diluted tea tree oil I used, (yes, I know I'm supposed to dilute it but I want to knock these little bastards hard on their asses and off my face!).

    If things go sideways, I'll let ya'll know and then back to the drawing board but I am really hopeful. In the meantime it's just me and my new best friend Tea Tree and we are gonna rock out.

  2. #2
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    Since my initial post, (time lag cuz it was a few days before being published by admin), I have read many journal articles about Rosacea and its "possible" link to the immune system, sibo, H. Pylori, etc. It's pretty clear to me that complicated is an understatement. While treatment with kwellada or tea tree oil will kill demodex mite, I might have a bigger problem. I took a blood test this week for H. Pylori. And, I took a trip to the health food store and got mastic gum, licorice root, probiotics, l-glutamine, reservatrol, and green tea. I have read that these items can help with H. Pylori and can help heal the gut. Incidentally I had an ulcer last year and I'm pretty sure it's coming back. I was not prescribed any antibiotic for it, just an antacid.

    While the appearance of my skin has improved with tea tree oil, it is quite irritated and I need to take a break because my skin is red and flaking so I have switched to kwellada as of today. Since Sunday, the bumps have not reappeared and while my skin is irritated it is looking better and so I am still hopeful! I saw my derm today and I was prescribed 100mg of doxycycline for a month. My derm is skeptical of the Demodex theory and tea tree. My GP didn't even know what demodex was and no doubt I sounded crazy when I was explaining it, "No, really! Little bugs live in our hair follicles and come out at night, and leak their gut bacteria all over our faces..." Lol.

    To be continued...

  3. #3
    Senior Member Kisha's Avatar
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    Quote Originally Posted by Kylie View Post
    Since my initial post, (time lag cuz it was a few days before being published by admin), I have read many journal articles about Rosacea and its "possible" link to the immune system, sibo, H. Pylori, etc. It's pretty clear to me that complicated is an understatement. While treatment with kwellada or tea tree oil will kill demodex mite, I might have a bigger problem. I took a blood test this week for H. Pylori. And, I took a trip to the health food store and got mastic gum, licorice root, probiotics, l-glutamine, reservatrol, and green tea. I have read that these items can help with H. Pylori and can help heal the gut. Incidentally I had an ulcer last year and I'm pretty sure it's coming back. I was not prescribed any antibiotic for it, just an antacid.

    While the appearance of my skin has improved with tea tree oil, it is quite irritated and I need to take a break because my skin is red and flaking so I have switched to kwellada as of today. Since Sunday, the bumps have not reappeared and while my skin is irritated it is looking better and so I am still hopeful! I saw my derm today and I was prescribed 100mg of doxycycline for a month. My derm is skeptical of the Demodex theory and tea tree. My GP didn't even know what demodex was and no doubt I sounded crazy when I was explaining it, "No, really! Little bugs live in our hair follicles and come out at night, and leak their gut bacteria all over our faces..." Lol.

    To be continued...
    Okay, PLEASE just take a minute and look at my blog. I blogged everyday through my demodex treatment using tea tree oil and my face is as close to "cured" as it's going to get. It's not cured really but as long as I use my oil, it stays clear so more like managed.

    Please don't put 100% non diluted tea tree oil on your face. At this point you could probably do a 50/50 mix, but don't burn your skin and eyes with a 100% tto. Also, with the TTO treatment for demodex your face will start to look better and then it will turn on you and look worse....like worse than it proabably ever has and that is because you will have a huge die off of mites and your skin will react to it. After that it will look better and then the eggs will hatch (I know, it's freaking disgusting) and you will have another huge die off and your face will look horrible again. Good news is after that, if you keep using the oils, your face will really start to clear up and look "normal".
    Please go have a peak at my blog, I post lots of pictures and info. Good Luck!

    http://itsjustyourface.blogspot.com/

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    Hi Kisha, thanks and I visited your blog! I've been doing 50/50 jojoba and tea tree. I've noticed that instead of pp now, I have small hives and they are really itchy. They do go away when I take reactine. I'll take a wild guess that there's less demodex in my follicles but when they move to the surface I break out in hives...? Who knows!
    But my skin continues to improve and like you mentioned I'll have a day or two of hives.

    I have many allergies and I am allergic to dust mites so maybe these two mites have some similarities in their genetic proteins.

    I've been to an eye doctor and was diagnosed with old blepharitis. The eye doctor did confirm that demodex is the main cause for bleharitis.

    I took a blood test for H. Pylori and tested negative.

    Kisha, do you ever get break outs or hives? And, when does it usually happen? Is there a pattern?

    Cheers!







    Quote Originally Posted by Kisha View Post
    Okay, PLEASE just take a minute and look at my blog. I blogged everyday through my demodex treatment using tea tree oil and my face is as close to "cured" as it's going to get. It's not cured really but as long as I use my oil, it stays clear so more like managed.

    Please don't put 100% non diluted tea tree oil on your face. At this point you could probably do a 50/50 mix, but don't burn your skin and eyes with a 100% tto. Also, with the TTO treatment for demodex your face will start to look better and then it will turn on you and look worse....like worse than it proabably ever has and that is because you will have a huge die off of mites and your skin will react to it. After that it will look better and then the eggs will hatch (I know, it's freaking disgusting) and you will have another huge die off and your face will look horrible again. Good news is after that, if you keep using the oils, your face will really start to clear up and look "normal".
    Please go have a peak at my blog, I post lots of pictures and info. Good Luck!

    http://itsjustyourface.blogspot.com/

  5. #5
    Senior Member Kisha's Avatar
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    Quote Originally Posted by Kylie View Post
    Hi Kisha, thanks and I visited your blog! I've been doing 50/50 jojoba and tea tree. I've noticed that instead of pp now, I have small hives and they are really itchy. They do go away when I take reactine. I'll take a wild guess that there's less demodex in my follicles but when they move to the surface I break out in hives...? Who knows!
    But my skin continues to improve and like you mentioned I'll have a day or two of hives.

    I have many allergies and I am allergic to dust mites so maybe these two mites have some similarities in their genetic proteins.

    I've been to an eye doctor and was diagnosed with old blepharitis. The eye doctor did confirm that demodex is the main cause for bleharitis.

    I took a blood test for H. Pylori and tested negative.

    Kisha, do you ever get break outs or hives? And, when does it usually happen? Is there a pattern?

    Cheers!
    I don't ever break out in hives. If you are using a good pure tea tree oil that doesn't have any additives and isn't chemically distilled than it should not cause a allergic reaction. Maybe it's the jojoba oil or maybe you need to dilute it a little more, your skin might be extra sensitive to how strong it is.

  6. #6
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    Greetings all,

    I want to share an update regarding my "rosacea."

    After I suspected my type two rosacea was caused by demodex mites, I continued to use tea tree oil combined with moisturizer at night and I used metro gel during the day. This combo worked well together. I did notice that in the late evenings my facial skin would become itchy with bumps just beginning (perhaps the metro gel wearing off) so I would wash my face and apply the tea tree and moisturizer combo - itchiness subsided immediately and emerging bumps gone. I should note that my scalp was usually tingling and itchy at night time which I found annoying and gross cuz I knew these little critters were in my scalp.

    Fast forward to February and I told my derm to prescribe me ivermectin in the oral form. He complied reluctantly. Within 5 days my skin transformed yet again. It got even better and super clear. No more itchiness in the late evenings and my scalp was no longer itchy at all!

    A few weeks later my symptoms began to return which I found defeating. I decided to try 5% nix on my face over night. The symptoms disappeared the next day and have not returned since! I should mention that I resumed the tea tree oil and moisturizer combo at night and the metro gel during the day as a maintenance program to prevent a re infestation.

    Incidentally, I spoke with my veterinarian about demodectic mange. She told me that in her experience, mange is typically found in a few situations. One situation is when a puppy's immune system is immature and they can develop a localized infestation of demodex that usually clears as their immune system matures and another situation is found in certain breeds with compromised immune function. In the dogs with compromised immune function they have recurring mange over their lifespan and it becomes a management issue with the course of treatment being natural remedies that support and improve immunity and pharmacuetical treatments mainly oral ivermectin.

    In the world of optometry blepharitis is mostly if not always caused by Demodex infestation. Treatment is ivermectin oral or cream. In the world of veterinary medicine, mange is caused by demodex infestation and is treated with immune support remedies and oral doses of ivermectin.

    When will dermatologists get an education? It is my humble opinion that big pharma has a major influence on our treatment plans or the lack thereof. I won't get into that here because that's a long, complicated and controversial topic but it's something to think about.

    In the meantime, I thought I would share my update and thank this forum for existing

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    As someone who has had blepharitis for a while and seen ophthalmologist and read a bit I've never heard or read of ivermectin for blepharitis. They almost always want to prescribe an oral antibiotic along with a regime of cleaning the eyelid rim and antibiotic gel drops. They also usually recommend warm compresses.

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    Another TTO success story, in case anybody needs any further persuasion.

    I had classic, severe perioral derm in my early 20s that responded completely to the throw-the-kitchen-sink-at-it approach of my derm (topical salicylic acid, topic ?erythromycin, and some kind of oral antibiotic). Things were pretty much OK for about ten years, episodic pustules and papules only, no big deal. Through my thirties, things became more chronic. In my forties, it kept getting worse. Several times a week, this is what I'd experience:

    1. Stinging, itching, crawling, tingling feeling over an area of skin lasting a few hours, heralding the appearance of...
    2. One or more bumps, at this stage more like tiny, inflamed blisters than pustules, each 1-3mm.
    3. Usually I'd end up picking at them since they were so crawly-feeling. If I did this, they'd scab, If I didn't, they wouldn't, but either way...
    4. Next phase was a raised, firm pinkish papule, also 1-3mm, almost scar-like but softer. This would last for a few weeks, then...
    5. Resolve into a non-raised, circumscribed, very slightly flushed and hyperpigmented area of skin at the site of the former papule, which would eventually fade.

    Total time from first tingly/crawly sensations to complete fading and normal skin: 3+ months. Because they take so long to heal and I kept adeding new ones, my skin looked worse each week.

    Location: nasolabial folds, philtrum (between upper lip and nose), chin, occasionally around eyes; recently, increasingly on cheeks and forehead. Strikingly asymmetric (most recent flare is pretty much exclusively on R lower face.)

    Other important details: pretty much normal skin otherwise (occasional zits, which feel totally different and heal much faster). No flushing. Predictable fares with menstrual cycle. I am otherwise healthy, but have environmental allergies and a history of asthma. I also get nummular dermatitis on my legs every winter.

    Meds tried in past 10 years: azeleic acid, metrocream, topical tretinoin, topical clinda, oral doxyclycline. None effective, but I kept on the metrocream and dox as I tried to figure out the next step.

    Three months ago, I went on doxy 50mg BID and it did *nothing* other than make me queasy and alter the flora in other parts of my body. So discouraged! Wondered if I was missing something: was this even rosacea? Maybe I had cutaneous T-cell lymphoma! Scabies! Or some weird kind of chronic HSV infection! Did a bunch of reading, smiled at the idea of Demodex, but then checked out more articles and this forum. The more I read, the more Demodex went from a silly notion to I-wonder-if-this-is-what's-been-happening-to-my-face-all-this-time.

    I decided upon empiric treatment: First I washed my face with Rid shampoo (don't do this -- it's pyrethrin-piperonyl, which is related to permethin but doesn't blast mites, only lice.) Then I whipped up a 50% TTO/50% jojoba mix, which I started using twice a day. (I'm also washing with 1% selenium sulfide shampoo for additional mite-blasting activity, and still using metrocream to keep down any secondary inflammation -- even dead mites can have immune-provoking antigens.) Cut doxy donw to 50mg Q day and will taper it off over the next week or towo

    Results have been very dramatic. Since the very first application two weeks ago, there have been two tiny additional vesicles that were never as inflamed as previous ones, and healing much faster. And all the old ones are healing (that's a slow process, and I don't think TTO will speed it up -- my goal has been to avoid new ones.) Creepy-crawling sensations are gone (BTW, I took those to be irritated nerve terminals, not bugs -- very similar to what I experienced with shingles). One zit by my nose, no big deal (?from the jojoba.) My skin looks and feels markedly better than it has in years. The difference is not subtle. The irony is that all the stuff I'm using was in my own bathroom already.

    In retrospect, there were several clues that Demodex was a major contributing factor in my case:
    1. I only ever had (lots of) P & P in otherwise pretty normal skin, never any flushing.
    2. The lesions were always in "sebum-heavy" areas of my face, but asymetrically distributed. The distribution was sometimes almost linear.
    3. I have a history of getting sensitized to non-pathogenic antigens (allergies and asthma; nummular derm may be something similar).

    It makes sense to me that certain otherwise healthy people can develop robust but ineffective immune responses to either Demodex antigens, or bacteria-inside-Demodex antigens. Our immune systems huff and puff and mount an enthusiastic local inflammatory response that doesn't do anything to keep the bugs in check, but does damage our skin. All that inflammation probably starts a vicious cycle of broken-down-skin --> more bug antigens deeper down in the dermis --> even more immune response, etc. My immune system is a good one -- I'm healthy -- but it is prone to glitches. Perhaps the ability to keep Demodex in line is genetically based. Looking forward to reading more research on this in years to come.

    I recognize that this will be a chronic battle, but for the first time in years, I don't feel depressed when looking at my skin. Will post periodic updates.
    Last edited by omores; 30th April 2015 at 08:36 PM.

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    My eye doctor gave me this product, (tea tree oil eyelid wipes), for my blepharitis: http://www.cliradex.com/resources.html

    The active ingredient in tea tree oil that kills demodex mites is Terpenin-4-ol.

    My pharmacist and I had a conversatiopn about demodex and blepharitis. He told me he fills most prescriptions treating blepharitis with the Ivermectin cream.

    Did antibiotics get rid of your blepharitis?


    Quote Originally Posted by thekarens View Post
    As someone who has had blepharitis for a while and seen ophthalmologist and read a bit I've never heard or read of ivermectin for blepharitis. They almost always want to prescribe an oral antibiotic along with a regime of cleaning the eyelid rim and antibiotic gel drops. They also usually recommend warm compresses.

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    Default Re: Another TTO success story, in case anybody needs any further persuasion

    Hi Omores, that's great news for you! I have allergic asthma and allergies also. In fact, I have a crustacean and dust mite allergy. Doing some online research I looked at a few molecular biology studies and learned about the cross-reactivity between crustaceans and dust mites. I now have to wonder if there is cross-reactivity between dust mites and demodex mites... I have now looked at a couple of studies that suggest there should be further investigation into this.

    Cheers

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