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Thread: I'm curious how many of you have been diagnosed with pityriasis folliculorum?

  1. #11
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    Quote Originally Posted by Tom Busby View Post
    Hi Sarat, the primary problem with employing skin scraping or biopsy is that everyone has a resident population of demodex, so a doctor can easily brush it off, because of course, he would find demodex. (Dr. Forton's article states that 100% of his subjects were found to have demodex.)

    And, there is no test for the allergic reaction (cascade of signs and symptoms) that result in demodicosis. So we are left with observation and logical inferences.

    However, docs don't like to say or imply, "try this and see what happens," but under the circumstances treating a likely allergy to demodex involves a topical arachnicide (miticide) like Soolantra, which is in fact the only logical approach. Plus of course, daily showering with mild surfactants, rinsing completely, and then applying a non-occlusive lotion to minimize TEWL.
    There is a video here on the science of testing for demodex mites in rosacea from Professor Frank Powell's research:

    https://www.youtube.com/watch?v=WnnbwHWSHTQ

    As the video implies, there is a greater interest in demodex mite caused rosacea in Ireland and some European countries, more scepticism in the US, and virtually no interest in the UK in this amongst dermatologists.

    What mild surfactants and non-occlusive lotion would you suggest?
    Last edited by antwantsclear; 29th December 2018 at 10:26 AM.

  2. #12
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    that video is disgusting and fascinating at the same time lol. I talked to my Dr today about all my skin issues and demodex mites, he really didn't know much but read what I brought him and was texting his friend who's a dermatologist about pityriasis folliculorum. The dermatologist talked about doing a skin biopsy and to rule out morgelloan's. Kind of annoyed that morgelloan's was brought up by the derm, but thankfully my Dr went ahead and prescribed the Soolantra.

    One thing that could be an issue though, is if this helps my Dr doesn't want to refill the prescription. I can understand where he's coming from, he's not a derm and said he rarely deals with skin issues so I get his hesitation. i'm assuming i'll know whether or not it's working before finishing the full 45mg tube anyways

  3. #13
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by SaraL View Post
    that video is disgusting and fascinating at the same time lol. I talked to my Dr today about all my skin issues and demodex mites, he really didn't know much but read what I brought him and was texting his friend who's a dermatologist about pityriasis folliculorum. The dermatologist talked about doing a skin biopsy and to rule out morgelloan's. Kind of annoyed that morgelloan's was brought up by the derm, but thankfully my Dr went ahead and prescribed the Soolantra.

    One thing that could be an issue though, is if this helps my Dr doesn't want to refill the prescription. I can understand where he's coming from, he's not a derm and said he rarely deals with skin issues so I get his hesitation. i'm assuming i'll know whether or not it's working before finishing the full 45mg tube anyways
    There was a period about ten years or so ago that demodex mites were not taken seriously when rosacea was discussed (does anyone remember Dr. Linda Sy?#). This goes back a very long time ago (over a hundred years actually*), but now that Soolantra has become the gold standard of rosacea treatment, along with Oracea, most dermatologists are now treating for demodectic rosacea first to rule out the mites. Of course, not all cases of rosacea are demodectic, so it is simply one of the many treatments in the armamentarium used. At least now demodectic rosacea is accepted by those who are professionals in dermatology. As you know not all physicians are keeping up with the latest information out there for not only rosacea, but for all the diseases, since it is difficult to keep up with everything and that is why physicians specialize into narrow practices. Glad your physician gave you the Rx for Soolantra. You should know within 30 days whether it works or not for you.

    #Dr. Linda Sy said in 2000, “I personally believe demodex mites are incidental parasites that prey on compromised skin causing secondary symptoms, not unlike bacteria & fungi. They are not the primary cause of rosacea. Therefore, I suspect that not all rosaceans have demodex as a relevant factor.” She also points out in the same post that “Demodex folliculorum has been mentioned as an aggravating factor to rosaceans for many decades and yet, I have not seen any formal double blind study done on this front. (This supports the wisdom of independent research funding by rosaceans). As you have presented, articles have been published, reporting individuals (a number of whom are immunocompromised) who responded to rx of demodex .” See end note 64 for more examples like this.

    *"From these and other statements it is seen that in suggesting the thought that these minute forms of life are etiological factors in even some of the phases of acneform diseases, I shall be but little in accord with the highest authorities. In antagonism to these views, I may say that the results of my observations appear to indicate a close relationship of the parasites with the diseased condition."
    Demodex Folliculorum in Diseased Conditions of the Human Face
    Proceedings of the American Society of Microscopists, Vol. 8, 1886, page 123, Published by: Wiley-Blackwell
    Last edited by Brady Barrows; 30th December 2018 at 08:28 AM.
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    Quote Originally Posted by Brady Barrows View Post
    There was a period about ten years or so ago that demodex mites were not taken seriously when rosacea was discussed
    I remember it well Brady, even slightly more recently than 10 years ago I'd suggest. I recall clearly how even mentioning demodex in an online post would quickly bring multiple howls of derision. I'm glad things have moved on...

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    I seem to have these small white "spikes" all over my face. Including my forehead and eyebrows. Can I put soolantra on these areas of the face? I will be seeing my dermatologist this upcoming week. I am afraid that he may but out of touch. But I'm going to try to reason with him. Of course in a respectful manner.
    Also can anyone give me some ideas on cleansers to use? I haven't washed my face in a long time. I've only been using water. Which has clearly exacerbated the issue. I'm afraid of using the wrong soap or cleanser. Any advice would be greatly appreciated.
    One more thing. Is it important to cleanse the skin before applying soolantra? Or does that even matter?

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    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by Mothinrust View Post
    I seem to have these small white "spikes" all over my face. Including my forehead and eyebrows. Can I put soolantra on these areas of the face? I will be seeing my dermatologist this upcoming week. I am afraid that he may but out of touch. But I'm going to try to reason with him. Of course in a respectful manner.
    Also can anyone give me some ideas on cleansers to use? I haven't washed my face in a long time. I've only been using water. Which has clearly exacerbated the issue. I'm afraid of using the wrong soap or cleanser. Any advice would be greatly appreciated.
    One more thing. Is it important to cleanse the skin before applying soolantra? Or does that even matter?
    I simply use water to wash my face. If you want a soap, make sure it is not irritating your skin, i.e., Ivory Soap, a gentle soap without a lot of additives may suffice. There are other cleansers that some rosaceans advocate, i.e., Albolene, Sulphur Soap, Purple Emu, and the list goes on and on. You just need to find one that doesn't irritate your skin and everyone is so different that you simply have to find what works for you.
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