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  1. Antonia, The general consensus is that the mites on cats or dogs are a different species, however, as pointed out above, scabies and other demodex can infect a human from a pet. There should be more research on this but as it stands now the data shows that the species of mites on humans are different than on pets, generally speaking. Each mammal usually has its own species of demodex mites. The point of this post is that since we do know that mites can travel from pets to humans, there is a possibility that demodex do indeed infect humans from pets. No one certainly wants to be infected with scabies and avoids any contact with an infected human or pet.
  2. I didn't read this till after my previous post. Good you are taking Tumeric and probiotics. Keep taking them.
  3. Not sure which Blueberry Kind bar you are eating but I found the above Nutrition Facts Label to show you how much carbohydrate is in this bar which shows 24 grams in a 35 gram serving. You can subtract the 2.5 grams of dietary fiber since fiber has no significant energy to consider.* So technically the above serving is 21.5 grams of carbohydrate in a 35 gram serving. That means this bar is 61% carbohydrate. This is a high carbohydrate food. When you carefully go through the Nutrition Facts Label for everything you eat in a day, you are probably, without a doubt eating a high carbohydrate diet. There is ample evidence that sugar/carbohydrate is a rosacea trigger in anecdotal reports. For that matter, any proposed rosacea trigger is based upon surveys or anecdotal reports, therefore, listing sugar/carbohydrate as a rosacea trigger is just as valid as any other proposed rosacea trigger, no matter who makes the list. So usually the question is what should you eat for thirty days to see if reducing sugar/carbohydrate improves your skin? Eat high protein and fat. Eating high protein/fat for thirty days poses absolutely no health risk contrary to what you might learn from any source. After the thirty days you can then decide based upon what you learn whether this improves your rosacea and other issues. This will not be easy because sugar is an addiction. So you simply have to balance whether having your skin issues improve is worth the effort to get off of sugar for just thirty days. Also since you are taking doxycycline, you will need to build up your good flora with probiotics, which is now an accepted medical treatment for rosacea. Short term antibiotics for rosacea may be required to control rosacea, but long term antibiotic treatment for rosacea can produce some unwanted side effects and risks. You need to decide whether taking long term antibiotics are worth those side effects and risks. Probiotics offer an alternative. How long did you use Soolantra? Why did you stop using it? It is good you are taking supplements, herbals and vitamins. Have you read this post? Don't give up, you will find a way to control your rosacea and other issues. *To learn why fiber is not a significant source of energy, read the article, Carbohydrate Not Essential For Human Survival
  4. Methanobrevibacter smithii image courtesy of Cedars Sinai Bacteria has been implicated in rosacea with a huge amount of clinical papers on this subject. Demodex is now without a doubt linked to a significant number of rosacea cases. At least one fungus has been associated with rosacea, and we have papers indicating treatment for one particular protozoa improves rosacea, however virus has not been ruled out in rosacea. The human microbiome includes the skin which contains a number of different microbes. [1] One microbe that has generally been totally ignored is archea, which has never been ruled out as having anything to do with rosacea. Archea and Rosacea "Methanobrevibacter smithii is the predominant archaeon in the human gut." The general public has little if any knowledge of this microbe which has been known to exist in the human microbiome for some time now. "Archaea are a major part of Earth's life. They are part of the microbiota of all organisms. In the human microbiota, they are important in the gut, mouth, and on the skin. They may play roles in the carbon cycle and the nitrogen cycle." [2] The chief reason that archea is basically totally ignored as having anything to do with rosacea is that there is no known archea human pathogen. Furthermore, due to the bias the scientific community has towards bacteria which focuses research on bacteria ignoring most of the other microbes, including archea, little is known about archea. "A deeper knowledge of human microbiome composition and microbe-host interactions will contribute to clarify the mechanism of development of rosacea and possibly will provide innovative therapeutic approaches." [3] Basically we have no idea what role archea plays in the skin microbiome due to a lack of investigation into this subject. Hence, little is known of what role archea may play in rosacea. There is absolutely no motive to investigate this since who would fund such a study? Hopefully someday some research will discover the role archea plays in the human microbiome and whatever revelations are discovered may alter our understanding of archea. Do you want to fund such a study? Could 10K members of the RRDi get together and each donate one dollar to fund such a study? Only with your help could we reach such a goal. Think about it. [4] End Notes [1] "Microorganisms inhabiting superficial skin layers are known as skin microbiota and include bacteria, viruses, archaea and fungi." Future Microbiol. 2013 Feb;8(2):209-22. doi: 10.2217/fmb.12.141. Skin microbiota: overview and role in the skin diseases acne vulgaris and rosacea. Murillo N, Raoult D. "In the GI tract, the microbiome is made up of trillions of microbes including bacteria and other microbes such as fungi and archaea. The skin is also colonized by an equally complex microbiome that varies with host genetic and environmental influences. Emerging research suggests that the collection of microbial communities that populate the skin and GI tract, rather than single microorganisms alone, is responsible for disease." Dermatol Pract Concept. 2017;7(4):31–37. Published 2017 Oct 31. doi:10.5826/dpc.0704a08 Diet and rosacea: the role of dietary change in the management of rosacea Emma Weiss and Rajani Katta "Human skin hosts a diverse ecosystem of bacteria, fungi, viruses, mites, and archaea." Skin Microbiota and Your Health, by Chris Kresser, Kresser Institute [2] Archea, Wikipedia [3] Journal of Clinical Gastroenterology 48 Suppl 1, Proceedings From The 7th Probiotics, Prebiotics & New Foods Meeting Held In Rome On September 8-10, 2013:S85-S86 · November 2014; DOI: 10.1097/MCG.0000000000000241 Skin Microbiome and Skin Disease The Example of Rosacea Mauro Picardo [4] More thoughts on this subject to think about:Rosacea Research in Perspective of FundingRosacea Research in Perspective of Idiopathic Diseases
  5. A paper written in 2017 about diet and rosacea never once mentions sugar/carbohydrate as a rosacea trigger and parrots the diet triggers promoted by the NRS while admitting that "Dietary triggers are also frequently cited by patients, although there is a lack of research in this area. In one survey by the National Rosacea Society of over 400 patients, 78% had altered their diet due to rosacea. Of this group, 95% reported a subsequent reduction in flares." The NRS has never listed sugar/carbohydrate as a rosacea trigger, even though the number of anecdotal reports continue to grow that indeed sugar/carbohydrate is just as valid a rosacea trigger as any of the other NRS proposed triggers. The paper about diet and rosacea is cited below: Dermatol Pract Concept. 2017;7(4):31–37. Published 2017 Oct 31. doi:10.5826/dpc.0704a08 Diet and rosacea: the role of dietary change in the management of rosacea Emma Weiss and Rajani Katta
  6. Welcome to the RRDi community support. If you are suffering from rosacea plus gastatory face flushing* and erythromelagia, we can only empathize with your situation. Your condition is extreme and quite unusual. Not many rosaceans are suffering as much as you are suffering. Have you tried avoiding sugar and carbohydrate or at the very least reduced your intake to see if this improves your situation? Sugar is the fire that burns rosacea. It is not expensive to avoid sugar, in fact, you will save money avoiding sugar. Basically, all you do it eat high protein/fat for thirty days to see if your skin improves. Eating high protein/fat for just thirty days and drinking lots of water is not a health risk since it is only temporary. You may learn that you need more protein/fat instead of the high sugar/carbohydrate to control your rosacea. For example, you may not know how eating macaroni and cheese is a high carbohydrate meal. Our bodies are mostly water, protein and fat and carbohydrate only takes a very small percentage of our body mass. It is simply something that you can rule out to see if this helps your skin. In order to recommend topicals, we would need to know what topicals you have tried. Also what oral medications or vitamins/supplements or any other oral treatments have you tried? How long have you been suffering from this? * "Gustatory flushing affects both sides of the face and is associated with excessive salivation, tear production and nasal secretion with no history of parotid gland injury. This may be reproduced by chewing a chilli pepper and holding it in the mouth for 5 minutes." Flushing, DermNet NZ
  7. Belo Essentials Tranexamic +Kojic acid Belo Essential Kojic Acid +Tranexamic Acid Soap Belo Essentials Tranexamic +Kojic acid Intensive Whitening Face And Neck Cream
  8. Colorized electron micrograph showing malaria parasite [protozoa] Image courtesy of Wikimedia Commons Protozoa and rosacea has not been considered in any clinical paper known to date. However, there is a "link between protozoa, vitamin B12 deficiency, acne and depression" according to at least one clinical paper. [1] This same source states the following about rosacea: "Rosacea is another inflammatory skin disease that causes facial redness but it is different from acne, the common denomination being inflammation. Metronidazole, a synthetic antibacterial and antiprotozoal agent of the nitroimidazole class, is used against protozoa such as Trichomonas vaginalis, amebiasis, and giardiasis. Metronidazole is extremely effective against anaerobic bacterial infections and is also used to treat Crohn’s disease, antibiotic-associated diarrhea and rosacea. The nitroimidazoles class of agents used to treat G. lamblia infection includes metronidazole, tinidazole, ornidazole, and secnidazole. This class was discovered in 1955 and was found to be highly effective against several protozoan infections." [1] "Protozoa constitute a group of microorganisms, also known as protists, some of which are responsible for serious diseases in humans, such as malaria and Chagas' disease and inflammatory disease conditions." [1] A significant number of worldwide deaths due to diarrhea are caused by three protozoas - Entamoeba, Cryptosporidium, and Giardia. The human microbiome includes a number of different microbes, including protozoa. The NRS substantiates that protozoa are included in the human microbiome by publishing this statement, "Microbes include bacteria, fungi, protozoa [bold added] and others, and may be found in greatest concentrations in the ears, nose, mouth, vagina, digestive tract, anus and the skin." [2] Very little is known about protozoa and rosacea. What exactly are protozoa? "Protozoa (also protozoan, plural protozoans) is an informal term for single-celled eukaryotes, either free-living or parasitic, which feed on organic matter such as other microorganisms or organic tissues and debris. Historically, the protozoa were regarded as "one-celled animals", because they often possess animal-like behaviors, such as motility and predation, and lack a cell wall, as found in plants and many algae. Although the traditional practice of grouping protozoa with animals is no longer considered valid, the term continues to be used in a loose way to identify single-celled organisms that can move independently and feed by heterotrophy." Wikipedia Treatment Used for Malaria Has Proved Successful in Rosacea There has been some treatments for malaria [protozoa] that have been used to treat rosacea such as mepacrine, artemisinin, artesunate, chloroquine, and hydroxychloroquine that have proved successful in some rosacea patients. Protozoa has never been ruled out as having a connection with rosacea. There simply isn't data on this subject. There needs to be a clinical study done on protozoa and rosacea. Who would fund such a study? Since protozoa has never been ruled out in causing rosacea, who would support such an investigation? Would you? Just think if 10K members of the RRDi each donated one dollar and insisted on supporting a reputable clinician to study protozoa and rosacea, what might be discovered? If you have a comment about this, please find the green reply button and let us know your comment. End Notes [1] Research, September 2015; DOI: 10.13140/RG.2.1.1087.9200 PROTOZOAL LINK BETWEEN SEVERE ACNE, RISK OF ATTEMPTED SUICIDE AND IMMUNE SUPPRESSION: A direct peripheral blood test to confirm microparasitic infections, Beldeu Singh [2] The Ecology Of Your Face: Demodex, Rosacea And You, National Rosacea Society
  9. I hope others try this. I was just pointing out I couldn't find any essential oil available. Are the leaves available for purchase somewhere?
  10. Mepacrine is one of the Anti-parasitic Prescription Agents. There are some papers indicating using mepacrine (Quinacrine) for the treatment of rosacea. One paper published in The Lancet, May 1952 written by Borrie Peter and another paper published in 1955. [1] Another paper mentions using mepacrine and chloroquine in combination to treat rosacea. [2] Anecdotal Reports Here are some anecdotal reports using Mepacrine: lucy_nic87 reports, "i have now been on mepacrine for about 5 weeks and this last week particularly my flushing has been much reduced. my redness is still there, if anything perhaps a bit worse, but i have not had any of that hot feeling, burning, flushing i was having. my skin in general feels calmer. i am however turning rather yellow which can be a side effect for some. if it doesnt get too much worse i can handle it, but it if increases im not sure." lamarr in October 2008 started a thread about Mepacrine. Halfpipe101 in May 2009 started a thread that his flushing is almost cured using Mepacrine. kev711216 in May 2011 started a thread on success using Mepacrine. Ray at RF [post no 14 on 5/22/2011] wrote, "I've been on quinacrine now for 3 months and I'm happy to report I havent flushed once in almost a month. Scarlet Letters has an interesting article discussing using mepacrine and plaquenil in treating rosacea. End Notes [1] The Lancet Volume 259, Issue 6718, 31 May 1952, Page 1113, Letters to the Editor TREATMENT OF ROSACEA WITH MEPACRINE Borrie Peter Science Direct Acta Derm Venereol. 1955;35(6):446-52. Mepacrine in rosacea. INMAN PM, GORDON B. [2] Br J Dermatol. 1955 Dec;67(12):421-5. Mepacrine and chloroquine in the treatment of rosacea. BRODTHAGEN H.
  11. A recent study published by International Immunopharmacology states that hydroxychloroquine "improved rosacea in rosacea-like mice and mast cells (MCs)" and investigated "the effects of HCQ treatment for rosacea patients". The paper concludes, "In vitro, HCQ suppresses LL37-induced MCs activation in vitro, including the release of inflammatory factors, chemotaxis, degranulation and calcium influx. Moreover, HCQ attenuated LL37-mediated MCs activation partly via inhibiting KCa3.1-mediated calcium signaling. Thus, these evidences suggest HCQ ameliorated rosacea-like dermatitis may be by regulating immune response of MCs. Finally, the 8-week HCQ treatment exerted satisfactory therapeutic effects on erythema and inflammatory lesions of rosacea patients, indicating that it is a promising drug for rosacea in clinical treatment." Since hydroxychloroquine is available worldwide in generic form we should hear more reports from rosaceans who will ask their physician for a prescription to confirm these results. Duff Man reported in 2017 that this worked for him. Another thread at RF in 2010/2011 has a few others who have tried it discuss their experience. antwantsclear [post no 240 and post no 243] reports taking hydroxychloroquine starting in 2011 and continues to use it for flushing. One paper published in the Archives of Dermatology, January 2011, indicates that 3 out of 5 patients with neurogenic rosacea were successful using hydroxychloroquine. More Info Hydroxychloroquine is a novel therapeutic approach for rosacea. Plaquenil (Hydroxychloroquine)
  12. A paper published in the British Journal of Dermatology concluded that after treatment with 1% and 3% Minocycline Topical Gel, this resulted with a "significantly decreased inflammatory lesion counts and a significantly larger proportion of subjects achieved IGA success at week 12 in the 3% topical minocycline group. These findings support further evaluation of minocycline gel for the treatment of inflammatory lesions associated with papulopustular rosacea." Metronidazole will be having some competition.
  13. Dry skin (Xeroderma) can be a co-existing condition with rosacea. When treating rosacea with topicals or oral treatments, a common side effect is dry skin, and if one already has dry skin, this complicates and exacerbates the dry skin issue further. "Symptoms most associated with xeroderma are scaling (the visible peeling of the outer skin layer), itching, and skin cracking." Wikipedia "Repeated application (typically over a few days) of emollients or skin lotions/creams to the affected area will likely result in quick alleviation of xeroderma. In particular, application of highly occlusive barriers to moisture, such as petrolatum, vegetable oils/butters, and mineral oil have been shown to provide excellent results. Many individuals find specific commercial skin creams and lotions (often comprising oils, butters, and or waxes emulsified in water) quite effective (although individual preferences and results vary among the wide array of commercially available creams)." Wikipedia The Merck Manual recommends the following: "Frequency of bathing should decrease and tepid, rather than hot, water should be used. Skin moisturizers should be used frequently, particularly immediately after bathing, to decrease transepidermal water loss. Thicker moisturizers such as petrolatum- or oil-based moisturizers are more effective than water-based lotions, although water-based lotions may be better tolerated in warmer climates. Moisturizers with additives such as ceramides, alpha-glycolic acids (eg, lactic, glycolic, and pyruvic acids), and beta-glycolic acids (eg, salicylic acid) are very commonly used. Increasing fluid intake and using humidifiers also help." Xeroderma, Merck Manual Women's Health has an article on treating dry skin using The Inkey List treatments and has this to say about the subject: "Dry skin needs – you guessed it – serious hydration." The following four treatments are recommended: (1) Polyglutamic Acid [1] (2) Squalane Oil [2] (3) Rosehip Oil [3] (4) Lactic Acid [4] "Oral hydration is key but directly hydrating the skin with a solid moisturizer is just as important. You must pick a moisturizer based on your skin type. If you have dry skin use a cream with greater oil content." [5] End Notes [1] Polyglutamic Acid THE INKEY LIST Polyglutamic Acid Polyglutamic Acid Serum [2] Squalane Oil Amara Beauty Squalane Oil The Ordinary 100% Plant-derived Squalane [3] Rosehip Oil Bvokey recommends rosehip oil for rosacea. Eva Naturals Rosehip Seed Oil Kate Blanc Rosehip Seed Oil Leven Rose Rosehip Oil Radha Rosehip Oil Teddie Organics Rosehip Seed Essential Oil The Inkey List Rosehip Oil The Ordinary 100% Organic Cold-Pressed Rose Hip Seed Oil Trilogy Certified Organic Rosehip Oil [4] Lactic Acid The Inkey List Lactic Acid Measurable Difference Lactic Acid Face Serum [5] My skin is as dry as the Mojave, what do I do? By Dr. Ali Tehrani, For the Daily Press Etcetera (Moisturizers) There are a number of other moisturizers to consider in our affiliate store. Coconut Oil for Rosacea (as a moisturizer)
  14. "Allergic reactions in the skin can be caused by many different chemical compounds found in creams, cosmetics, and other topical consumer products, but how they trigger the reaction has remained somewhat mysterious." Study may explain how chemicals in skincare products trigger allergic contact dermatitis, New Medical
  15. Time to review the 2018 Form 990 the NRS publishes on their website or you can read for yourself below (click to open pdf): nrs_990_2018.pdf Review Let's first try to concentrate on the positive aspects of this report. The NRS is the leading non profit organization for rosacea that supports research grants for rosacea. In 2018 a total of $12,500 was spent on research grants if you read Form 990, Part IX, Line 1. How can you figure out who received the $12,500? You definitely have to do some digging since the Form 990 doesn't disclose this. The NRS website in its Awarded Grants page shows Dr. Anna Di Nardo and colleagues were awarded $25,000 in 2018. In reviewing the Form 990 it does indeed show that $25,000 was awarded to the Regents of UCSD shown below: So let's give the NRS a benefit of doubt and instead of $12,500 which is shown on Form 990, Part IX, Line 1, and commend the NRS for spending $25K for rosacea research grants. This means that the NRS spent 5.37% of its donations in 2018 on rosacea research. Putting into Perspective How the NRS Spends Donations 2018 donations were down from previous years with a total revenue of $465,042 (in the 21 years I have been following the NRS Form 990s, 2001 was the only year lower in donations). While acknowledging above that the NRS spent $25K for rosacea research, putting this into perspective is the fact for every dollar donated to the NRS in 2018 only a little more than a nickel (5 cents) was actually spent on rosacea research. What was the rest of the donations spent on? Answer: 93% of the donations were spent on two private contractors that are owned by the president/director of the NRS Sam Huff. Here is a screen shot of the names of the two private contractors shown on Form 990: How do we know that Glendale Communications Group, Inc and Park Mailing and Fulfillment, Inc belong to Sam Huff? The Illinois Secretary of State gives the proof. As you can see from the screen shot above, Form 990, Schedule R, Line 2 shows the amount sent to these two corporations which is $432,408. Is this legal? Yes, of course. You didn't know that NON profit corporations can do this? If you want an education, read this post. Here is a screen shot of Form 990, Part VII, Section A, Compensation which is interesting: I didn't know that Zoe Draelos, MD who also serves on the RRDi MAC is now serving on the board of directors for the NRS. She received $2500 from the NRS in compensation. Good for her! Also Dr. Gallo who I have tried to contact to serve on the RRDi MAC to no avail also received $2500. Good for him! Did you note how much Sam Huff receives? The RRDi would love to give Dr. Draelos $2500 but we didn't even receive half that amount in donations so all we can do is keep our website going and keep the RRDi afloat since our donations are quite meager compared to the donations given to the NRS. One other very interesting item on the 2018 Form 990 the NRS has released is the amount of Excessive Contributions which has never been revealed in the twenty years I have been following NRS Form 990s. See below: If you note the screen shot above it says **Do Not File** ***Not Open to Public Inspection*** which if I had paid accounting fees of $26,691 to my accountant as shown on the NRS Form 990 for 2018, Part IX, Statement of Functional Expenses, Line 11, c, it would pose a question why is this made public? We have never before had any indication the amount of donations the pharmaceutical companies give to the NRS. And if you note in Form 990, Part VI, Governance, Section B, Policies, Line 11a, please note the question, "Has the organization provided a complete copy of this Form 990 to all members of its governing body before filing the form?" and also note that 'yes' was checked. This is also restated in Form 990, Schedule O, where it shows the following line: If the pharmaceutical companies discover that the NRS has disclosed its Schedule A, IDENTIFICATION OF EXCESS CONTRIBUTIONS, what might the consequences of this be? I find it odd in the first place that 501 c 3 non profits are not required to disclose the identification of who is donating when it is obvious they are private contributions and not pubic donations. However, you know who makes the IRS rules for non profits? Probably nothing will become of this disclosure but I find it really interesting. The only other interesting item I found was that the NRS reports an expense of advertising in the amount of $74,814 (Form 990, Part IX, Statement of Functional Expenses, Line 12. It also reports on Form 990, Part VIII, Statement of Revenue, Line 2a, Advertising Income in the amount of $85,000. I don't recall seeing any advertisements on the NRS website, but maybe I am missing something? I wish I could figure out how to get advertising income for the RRDi. Does anyone know how this is done? Sure could use some help. For a spreadsheet of all the years reviewed: click here.
  16. We are accepting articles from novice rosacea sufferers or health professionals on rosacea subjects to be published in the next edition of the Journal of the RRDi. There are no charges for submitting your article. You must join the RRDi to submit your article by clicking on the Sign up button and membership is free. You must follow the two steps below to begin the process to have your article reviewed, approved and published (scroll all the way down to view the TWO STEPS required to submit your article): (1) Step One Sign in or Sign up Look at the top right corner of your browser and either Sign up (if you have NOT registered) or Sign in (if you have already registered) See screen shots below to understand what to look for to learn how to SIGN UP or scroll further down to see how to SIGN IN: The Sign in process REQUIRES you to confirm your email address. (2) Step Two NOVICE ONLY After you have registered an account and you are a novice and you are logged in, in the same category forum you are in now, ROSACEA RESEARCH, POST your article on rosacea. You are currently in the following category forum: Look for the green button START NEW TOPIC and click on it (see screen shot below): Post your rosacea article and this starts the review process for novices only by clicking on the START NEW TOPIC green button. Professionals follow the directions below: PROFESSIONALS If you are a professional health care provider, please submit your paper using this form. We only accept portable data files (pdf). Please convert your paper to pdf when submitting your paper. You will be required to have a Google account, either your own Gmail account, or the RRDi will provide a free G Suite account upon request. If you are volunteering on the RRDi MAC a G Suite account will automatically be provided for you. ISSUES WITH THESE TWO STEPS If you are having any issues with the above two steps CONTACT us describing your issue so we can assist you.
  17. There are four Human Herpes Virus known that may have implications with rosacea which should be considered. They are Varicella zoster virus (VZV) (HHV)-3, Epstein-Barr virus (EBV)/ HHV- 4, Cytomegalovirus (CMV)/HHV-5, and Human herpes virus type 6 (HHV-6). [8] If you are suffering with any of these viruses and also have rosacea you may want to ask your physician about antiviral treatment drugs. Virus and Rosacea For more information.
  18. Update of using the ZZ cream. Used one jar of the cosmetic for a month or so and now on the Original ZZ cream again about two weeks in. Here are the results:
  19. Just an update on my venting in this thread, which started on April 8, 2019 (264 days this thread has been up and running) which now has 299 views as of this date (December 28, 2019). I have moved to Alabama and have begun going through the process of registering the RRDi in Alabama which is odd, because I recall one of the members of the board of directors for the Rosacea Research Foundation was a veterinarian living in Alabama. Very few rosaceans will recall all those events back in 2004 when two non profit organizations went in two separate directions. The RRF dissolved but David Pascoe still maintains its website and has now removed the names of those who served on the board of directors. So I put out a request for any member of the RRDi who lives in Alabama to come forward and volunteer to sit on the board of directors and Johannes Schild has filled that spot so that we have two members on the board who are residents of Alabama. We could also continue to be registered in Hawaii if any RRDi member would volunteer to do that, but since volunteering is usually something that our RRDi members shy away from, I doubt if that would ever happen. I personally knew a friend in Hawaii who has rosacea and asked her to do that but she told me she was also leaving Hawaii next year and couldn't volunteer. So if anyone wants to keep the RRDi registered in Hawaii it would be good to contact me asap. So this thread has had an average of just a little over 1 view a day since I initially posted my vent. Not too many care about reading my vent, and at least Apurva has replied to this thread (and I am happy for almost 300 views). However, I will continue my vent. Could one of you who reads this thread explain to me why you think hardly any of the RRDi members don't want to post in the public forum? Why would 1200 plus members join the RRDi and then NEVER post? What is going on? I thought since Facebook and Reddit were PRIVATE (social media groups for rosacea) and for some reason rosaceans prefer to be in private groups, the RRDi has sponsored a private rosaceans group but that has NOT been popular at all. We are spending $10/month to do this and it sure hasn't been used at all. I was thinking about making the public member forum we use through Invision Community into a PRIVATE forum. What are your thoughts about this? The RRDi does have Facebook and Reddit groups but that hasn't proved popular at all. What are your thoughts about all this? Why the lack of posting by RRDi members?
  20. Demodex Canis image courtesy of Wikimedia Commons Most clinical papers on rosacea refer to only two demodex mite species found in humans, demodex folliculorum and demodex brevis. For example, Wired magazine in its article on demodex reports, "Our network of skin caverns offers food and shelter to two different species of mites: Demodex folliculorum and Demodex brevis." However, there are a large range of demodex mite species (one source says, "approximately 50,000 species have been described" [1]). In dogs there are at least three types of demodex, Demodex canis, D. injai and D. cornei. [2] There are different species of mites living on birds and rodents. In fact, just about all mammals have some species of demodex mites living on them. Can any of these mites, especially on pets transfer to humans? The answer is yes. "Human infestations with mites such as Cheyletiella and Sarcoptes scabiei are reported occasionally. The transmission rate for S scabiei var canis from dogs to people is estimated to be 10-50%, and close, prolonged skin contact is the most important route of transmission. Cheyletiella mites from animals are also reported to bite humans readily; however, clinical signs may not be common, or possibly not recognized. One source estimates that approximately 20% of pet owners with Cheyletiella- infested animals are affected. Not all mites, even those known to have zoonotic potential, will readily infest people. For example, human infestations with species such as Ophionyssus natricis or Lepoacarus gibbus appear to be uncommon." [1] "A twenty-year-old girl student who feeds a Miniature Pinscher crossbred dog in her house for a while noticed common itchy papulopustular lesions, incrustation and some alopecic loci in her dog and admitted to Selçuk University Faculty of Veterinary Medicine, Department of Parasitology. Itchy papules and pustules were also observed in dog's owner face and arm about three or four weeks later. Skin scrapings and hair samples were taken from the patient and the dog and examined with light microscope. Adult and egg forms of Demodex spp. were detected in both patient and dog specimens in microscopic examination." [3] "Mange is a skin disease that is caused by two different species of mites. Sarcoptic manage is caused by Sarcoptes scabiei. Demodectic mange can be caused by several mites of the Demodex family. Sarcoptic mange is extremely itchy and highly contagious to other animals and humans. Demodectic mange is not as itchy, and while it can be transmitted to other dogs, it is not contagious to humans or cats." [4] "Scabies, an infestation by the itch or scabies mite, Sarcoptes scabiei var. hominis, remains a major public health problem worldwide and a common cause of PUO in returning travelers. The worldwide prevalence of scabies has been estimated to be about 300 million cases/y. Although more often associated with crowding, homelessness, institutionalization, and immunodeficiency, scabies occurs worldwide in both sexes, at all ages, and among all ethnic and socioeconomic groups." [5] "Sarcoptes scabiei or the itch mite is a parasitic mite (an arthropod) that burrows into skin and causes scabies. The mite is found in all parts of the world. Humans are not the only mammals that can become infected. Other mammals, such as wild and domesticated dogs and cats (in which it is one cause of mange) as well as ungulates, wild boars, bovids, wombats, koalas, and great apes are affected." Wikipedia Generally speaking it is rare for humans to contact mites from pets, but it can happen as the above sources are cited. Usually, the only species of demodex mites found on humans are demodex folliculorum and demodex brevis, but in some cases cited above, other mite species are found, with the exception of scabies, as noted above, which effects millions of humans. Also see: What is the difference between demodex, dust mites, bed bugs and scabies? Demodex Update End Notes [1] Acariasis, Mange and Other Mite Infestations, June 2012 The Center for Food Security and Public Health, Institute for International Cooperation in Animal Biologics, College of Veterinary Medicine, Iowa State University [2] Arachnida, Canine Parasites and Parasitic Diseases, Science Direct [3] Mikrobiyol Bul. 2018 Apr;52(2):214-220. doi: 10.5578/mb.66410. [A dog related Demodex spp. infestation in a student: a rare Demodex case]. Esenkaya Taşbent F, Dik B. [4] Mange in Dogs a.k.a. Sarcoptic mange, Demodectic mange, scabies, etc PETCOACH EDITORIAL [5] Journal of Travel Medicine, Volume 17, Issue 1, 1 January 2010, Pages 21–31, Mite‐Transmitted Dermatoses and Infectious Diseases in Returning Travelers James H. Diaz, MD, MPH&TM, Dr PH
  21. Sugar image and Fire image courtesy of Wikimedia Commons The RRDi is the only non profit organization for rosacea that lists sugar and carbohydrate as rosacea triggers (see the RRDi Trigger Factor List). Search all you can and you won't find either one listed on the other non profits for rosacea trigger lists. Why do you think this is the case? There is ample anecdotal evidence from rosacea sufferers that reducing sugar and carbohydrate in the diet improves rosacea while ingesting huge amounts of sugar and carbohydrate triggers rosacea. Trigger factors are simply discovered by anecdotal reports from rosacea sufferers in surveys and polls. What many rosacea sufferers don't understand is that sugar is carbohydrate, which is simply carbon plus water. There are absolutely no essential nutrients in carbohydrate, none. Increasing sugar/carbohydrate into your diet is a rosacea trigger. Sugar is the fire that burns your rosacea, the fuel for your inflammation. High Sugar Content Leads to Inflammation. If you are skeptical about this why not try eliminating or reducing sugar/carbohydrate in your diet for 30 days and see if your rosacea improves. Then eat a significant amount of sugar/carbohydrate in the diet after this 30 day experiment and notice what happens. Most rosaceans will not try this simple experiment to see if sugar/carbohydrate is triggering rosacea because most are addicted to sugar. Yes, sugar is an addition. For those septics, they will have to find another way to control their rosacea. Trigger avoidance is an accepted medical treatment offered by most physicians who parrot the NRS Trigger Factor List. However, you will be hard pressed to find a physician who parrots the NRS Trigger Factor List to mention you should avoid sugar/carbohydrate. The RRDi Trigger Factor List is much more extensive and continues to grow as more anecdotal evidence comes in from rosacea sufferers. Just picture in your mind that sugar is the fuel that is burning your rosacea. If you reduce the fuel that is burning your rosacea, you will help put the rosacea fire out. Etcetera Sugar And Rosacea Sugars to Avoid
  22. Rotavirus image courtesy of Wikimedia Commons Virus and Rosacea has never, ever been ruled out as a cause. Cite one paper that concludes virus is not a cause of rosacea. Why can't you find any paper that states this? Bacteria has been implicated in rosacea with a huge amount of clinical papers on this subject. Demodex is now without a doubt linked to a significant number of rosacea cases. At least one fungus has been associated with rosacea [1], and we have papers indicating treatment for one particular protozoa improves rosacea, however viruses have not been ruled out in rosacea, nor archea, for that matter. The human microbiome includes the skin which contains a number of different microbes, including virus. To help understand why virus should be considered in a differential diagnosis of rosacea which includes a very long list, take measles as an example, which most people do not associate with a virus. The medical name for measles is 'Measles Virus', [aka morbilli, rubeola, red measles, and English measles]. "Both rubella, also known as German measles, and roseola are different diseases caused by unrelated viruses." "A red, flat rash which usually starts on the face and then spreads to the rest of the body typically begins three to five days after the start of symptoms." [9] There are other diseases that you may not be aware of that are caused by virus such as smallpox, polio, cowpox, and influenza, all of these diseases can appear with facial erythema. There are other virus to consider that the symptoms include erythema or pimples on the facial skin, such as HIV, Herpes, Poxvirus, and this list continues. It is possible that a virus may be at the root of some cases of rosacea to consider and should be ruled out, but what physician considers ruling out virus in rosacea? Are there virus diseases that present with erythema? Could rosacea be caused by a virus? Virus and Rosacea Virus are very tiny compared to other microbes, on average 100 times smaller than bacteria.* Viruses are in bacteria, demodex, fungus, archea, and throughout the human body in the blood, as well as human cells and comprise more weight in the human body than bacteria by a factor of ten times. [2] Virus are in plants, animals, insects, fish, in the oceans, and comprise more weight on planet earth than any other life form including all the animals on land or fish in the sea combined! There are scant few, if any, clinical papers on virus and rosacea. There are a huge number of clinical papers on bacteria and rosacea and if you can find any paper on virus and rosacea, please find the green reply button and give the link to the paper! Wouldn't you think that a microbe that weighs ten times as much as the bacteria in the human body deserves some kind of investigation as to whether virus has anything to do with rosacea? One theory on the cause of rosacea involves a disorder of the innate immune system [3] and one paper explains what happens: "Recognition of bacteria and viruses [bold added] initiates the inflammatory cascade involving the release of cytokines, recruitment of immune cells, and production of AMPs and ISGs. AMPs and ISGs represent one of the most important and robust immune mechanisms in the skin. However, pathogenic bacteria—such as S. aureus—and cutaneous viruses [bold added] have evolved mechanisms to counteract innate immune mechanisms." [4] As you can see from the above paper which is typical, the focus is always on bacteria with a token mention of virus. Most, if not all clinical papers on rosacea rarely mention the word virus and focus mostly on bacteria. Our investigation found scant few papers that mention virus and rosacea which we list in the next subheading. Coronavirus and Rosacea Clinical Papers Mentioning Virus Associated with Rosacea "Granulomatous rosacea has been reported in children as well as adults, and in association with infection with the human immunodeficiency virus (HIV)." [5] Herpes Simple, a virus, has been associated with granulomatous rosacea. [6] "Two months after the beginning of the anti-retroviral treatment, the patient developed a progressively extending facial eruption resembling rosacea." [7] Human Herpes Virus There are four Human Herpes Virus known that may have implications with rosacea which should be considered, since there are absolutely no papers ruling out human herpes virus and rosacea. They are Varicella zoster virus (VZV) (HHV)-3, Epstein-Barr virus (EBV)/ HHV- 4, Cytomegalovirus (CMV)/HHV-5, and Human herpes virus type 6 (HHV-6). [8] If you are suffering with any of these viruses and also have rosacea you may want to ask your physician about antiviral treatment drugs. [8] Bacteriophage Scoll below for information on bacteriophage, a virus (third post). Anti-viral Treatments Shown Successful in Treating Rosacea Ivermectin (also shown effective in treating rosacea) Acylovir (papers about treating rosacea with Acylovir} Hydroxychloroquine is a novel therapeutic approach for rosacea (see also the fifth post in the current thread you are reading now). Hydroxychloroquine Suppresses LL37-induced Mast Cells Imiquimod Cream [possible anti-viral treatment] (read the fourth post in the current thread you are reading). Conclusion There are numerous clinical papers discussing the innate immune system reaction to rosacea and without a doubt, information about this subject enhances our knowledge on rosacea. However, because of a scientific bias towards bacteria ignoring virus (virus has ten times more weight in the human body than bacteria), this bias continues to influence and support more bacteria research on rosacea than researching virus. There needs to be more clinical studies done on virus and rosacea. Since virus has never been ruled out in causing rosacea, who would support such an investigation? Would you? Just think if 10K members of the RRDi each donated one dollar and insisted on supporting a reputable clinician to study virus and rosacea, what might be discovered? End Notes [1] Candida Albicans [2] Human Microbiome, Brady Barrows [3] Immune System Disorder Theory [4] PLoS Pathog. 2018 Dec; 14(12): e1007353. Innate antimicrobial immunity in the skin: A protective barrier against bacteria, viruses, and fungi Margaret Coates, Sarah Blanchard, and Amanda S. MacLeod Deborah A. Hogan, Editor [5] The granulomatous reaction pattern David Weedon AO MD FRCPA FCAP(HON), in Weedon's Skin Pathology (Third Edition), 2010 [6] JAAD, January 2015Volume 72, Issue 1, Pages e36–e37 Granulomatous rosacea manifesting after herpes simplex 2 infection: A case of Wolf's isotopic response Kaitlyn N. Mula, DO, Nicole M. Cassler, MD, Jeffrey N. Lackey, MD [7] Dermatology 2002;205:394-397 Ivermectin-Responsive Demodex Infestation during Human Immunodeficiency Virus Infection, A Case Report and Literature Review C. Aquilina, R. Viraben, S. Sire [8] Four Human Herpes Virus May be Implicated in Rosacea The 4 Common Viruses That Can Trigger Thyroid, Autoimmune, and Brain Problems, Dr. Will Cole [9] Measles, Wikipedia ------------------------------------------- *How Tiny Are Virus? Some authorities say ever smaller. "Personally, I always liked the metaphor that if a cell was a baseball stadium, a virus is the size of the ball..." So Just How Tiny Is a Virus? By Stuart Fox "Viruses are usually 20 to 300 nm. That is as tiny as we- an average human being are to the Earth." How tiny is tiny?, Neha Patil, The University of Melbourne "Named after the Latin word for small – parvus – viruses in the Parvoviridae family are just 23-28 nanometres (nm) in diameter." KEEPING UP WITH VIRUS TAXONOMY: SMALL VIRUSES, EXTRA SMALL VIRUSES AND A VIRUS USED TO PROTECT AGAINST FUNGAL DISEASE, by Laura Cox, Microbiology Society "Most viruses vary in diameter from 20 nanometres (nm; 0.0000008 inch) to 250–400 nm; the largest, however, measure about 500 nm in diameter and are about 700–1,000 nm in length." Virus, Size and shape, Encyclopedia Britanica ________________________________ 1 Millimeter (mm) = 0.1 Centimeter [or 1000 Micrometers (μm)] (one thousandth of meter) 1 Centimeter (cm) = [10 Millimeters (mm)] (one hundredth of a meter) 1 Micrometer (μm) = 0.0001 Centimeter [or 0.001 Millimeter (mm)] (or one millionth of a meter) 1 Nanometer (nm) = 0.001 Micrometer (μm) (or one billionth of a meter)
  23. image courtesy of Wikimedia Commons Acne Vulgaris is a completely different disease from rosacea, however some authoritative sources report that acne vulgaris can co-exist with rosacea.[1] In past literature, 'acne rosacea' was the term used to describe adult acne, and, this term is sometimes still used. [2] However, rosacea is generally confined to the facial area while acne vulgaris can be not only on the facial area but also on the trunk (chest and back). Treatments for acne usually irritate or exacerbate rosacea and is one of the differentiating diagnostic marker for a rosacea diagnosis. [3] According to the American Academy of Dermatology, acne is the term for plugged pores (blackheads and whiteheads), pimples, and even deeper lumps (cysts or nodules) that occur on the face, neck, chest, back, shoulders and even the upper arms. Acne affects most teenagers to some extent, but can also affect adults in the 20s, 30s and 40s. [4] Usually when pimples and pustules are present physicians treat acne vulgaris with acne (condition) treatments. [5] Acne is technically a condition while acne vulgaris is a disease. When acne treatments exacerbate the condition usually this indicates Rosacea Phenotype 4, changing the diagnosis in the patient and switching the treatment to rosacea. [6] This naturally begs the question, what is the difference between acne and rosacea? [3] A proper diagnosis needs to be from a physician. [7] End Notes [1] "It should be noted, however, that it is possible for acne vulgaris and rosacea to appear at the same time in the same patient." Medscape [2] “It is interesting that the original term for rosacea was “acne rosacea”, which has more features in common with acne than currently realized. If the “acne” portion had been retained in the later works, rosacea might have received much greater investigative attention.” A Personal Critique on the State of Knowledge of Rosacea Albert M. Kligman, M.D., Ph.D. Department of Dermatology, University of Pennsylvania, Philadelphia, PA, U.S.A. [3] What is the difference between acne and rosacea? Diagnosing Acne vs. Rosacea (Stanford Medicine 25) [4] Rosacea 101: Includes the Rosacea Diet, page 2, Brady Barrows [5] "If self-care remedies don't clear your acne, see your primary care doctor. He or she can prescribe stronger medications. If acne persists or is severe, you may want to seek medical treatment from a doctor who specializes in the skin (dermatologist)." Acne, Symptoms and Causes, Mayo Clinic [6] "Your doctor may prescribe an oral antibiotic such as doxycycline (Oracea, others) for moderate to severe rosacea with bumps and pimples. If you have severe rosacea that doesn't respond to other therapies, your doctor may suggest isotretinoin (Amnesteem, Claravis, others). It's a powerful oral acne drug that also helps clear up acnelike lesions of rosacea. Don't use this drug during pregnancy as it can cause serious birth defects." Rosacea, Symptoms and Causes, Mayo Clinic [7] Diagnosing Rosacea
  24. There has been at least three pharmaceutical companies researching and testing a topical minocycline foam or gel for rosacea. We await to see the results of these clinical trials and if these are effective and which one will be released first. It looks like Foamix, a subsidiary of Menlo Therapeutics, has announced Zilxi as the front runner if you scroll past this post and go to post no five in this thread. We will continue to follow the other 'horses' in this race. (1) FMX103 Topical Minocycline Foam, Foamix Ltd (2) BPX-04 Minocycline Topical Gel 1%, BioPharmX, Inc. (3) HY-01 Minocycline Gel 3%, Hovione
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