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Everything posted by smart2005ct

  1. Hello Brady! Greetings from Wuppertal Germany! I have succeeded with God help and the CEO of my bank to land in Germany at the door of prof. dr. Percy Lehmann at Helios Clinic. Keep the fingers crossed for me. Very interesting report. I have the feeling that for the very first time they got it that we are all unique and different and we need unique treatments. Also I am so glad that they have realized how big the psyhological burden is for Rosaceans and how Rosacea can destroy your social life. I cant wait for better days and a new life and the the same thing for all of us. Keep in touch. Hugs. PS: I am glad to be connected on LinkedIn with two of the authors of this report Dr. Anthony Bewley and Prof. Dr. Uwe Gieler
  2. Very good question ( I am positive we all know the answer which is called BIG ECONOMIC INTERESTS or in a single word MONEY). It is enough to watch this short video and see that along the time mankind used radioactive products for beauty and heroin for cough. It took a lot of time to admit that tobacco is dangerous for human being health too. Maybe centuries will pass till sugar will be on the list. Meanwhile lets just be happy Chocolate is on the list...... What can we do if Rosaceans are not united in a world of DIVIDE ET IMPERA!???
  3. Dear Brady, I have just send a message to Helios Clinic in Wuppertal, Germany. I am very eager to know what can be done for me. Sometimes I wish I was Madonna just because of this https://www.facebook.com/donate/280231332752230/280231336085563. I had a short change of messages with Helene Segara yesterday and even she is a very well known international artist is struggling to collect money to protect animals in France. It is heart breaking. Problems are everywhere on Planet Earth and if artists have problems in raising money from donations what a humble citizen like me can do? I will keep you posted always. God help us all.
  4. Dear Brady, I did not send an email to Bianka Sobolewska, M.D. in Germany because in her profile is written that she deals with Ocular Rosacea. From those contacted, from Helios Clinic in Wuppertal Germany the managers told me that Mr. Percy Lehmann, M.D. is in his vacation and will be back in the office today and they will tell me what can be done for me. Also Mr. Stefano Veraldi, M.D., Ph.D.  answered me from Italy but he told me that only a consultation will be necesary and no hospitalization and I am very afraid of trying anything alone at home and being the only one seeing the consequences. Finding financial support for the solution it is still a challenge. With all my psyhiatrical medication(an anxiolytic, an antidepressant and a supplement with vitamin B12 and amino acids for physical and intellectual fatigue that is an adjuvant to treatment with anxiolytics and antidepressants) for so many years my situation is still peaks and valleys and I still have days when I am terribly tired(like at the debut of it in September 2009) and all I can do is to lay down in bed and keep my eyes closed. Finding a solution that works for me is a very difficult task. When I am fine I think that I can conquer the world, when I am terribly down all I want is to end up asap. I feel like in September 2009 I jumped in in the roller coster of death. It is like God Almighty is putting me to an endless test of faith. I am just wondering what Rosaceans could do without a beacons of light like YOU???
  5. Dear Brady, Mr. Alexander Egeberg, M.D., Ph.D. from Denmark was so kind and prompt and answered me immediately. He said that even all Roscaea symtoms are not present in my case he still belives that I have Rosacea. He recommended me Sumatriptan wichi is a anti-migraine drug for erythema that has vasoconstriction effect. That should be good for the skin if recently I was not diagnosed also with vertebro-basilar circulatory insufiency(which I believe I have since my face started to burn even I was diagnosed recently as I was having hypoxia crisis before) caused by cervical spondylosis and neurologyst and rheumatologist are prescribing me Cavinton Forte(vinpocetine) which is a vasodilatator. My question is how a person with vertebro-basilar circulatory insufiency can take vasodilatators if on the skin of the face is having FACIAL VASCULAR HIPER REACTIVITY SYNDROME??? How these two conditions can be treated successfully together? Man oh man. Each doctor is limited to its area of expertise. How can I found the solution? I am waiting for other doctors replies. Oh God!
  6. Dear Brady, Thank you for the suggestion with the dermatologysts I should contact. I would like to let you know that I cannot open the CVs of Thomas Jansen, M.D., Stefano Veraldi, M.D., Ph.D. and Evelina Buinauskaitė, M.D., on our website. Even so I succeeded to contact the last two of them. In the case of Thomas Jansen, M.D. and Husein Husein El-Ahmed, M.D.  I dont think they still work at the places that are mentioned on our website. Even so I have succeeded to contact seven of them. I pray to God they will answer me. Take care.
  7. Good morning Brady, Thank you very much for your very prompt feedback. I will contact each one of them right now. I am terribly scared as I dont understand if my diagnostic is worst or milder than Rosacea. At the first visit at the last dermatologyst in Bucharest I was diagnosed with PHOTOSENSITIVITY SYNDROME and given XYZAL and the sunscreen Anthelios Ultra SPF+50 fron La Roche Posay(at that time the analysis for Erythematous Cutaneus Lupus were not ready all). Xyzal was doing no difference on my face and the sunscreen I had to give up on it in the sixth day due to terrible pains in the skin(The same thing happend with ozonated olive oil cream in only seven days a few weeks later). At the second visit I asked the dermatologyst what is my diagnostic if is not Lupus there is still Rosacea? If is Rosacea why Rosacea products are not doing me well? I was diagnosed with FACIAL VASCULAR HIPER REACTIVITY SYNDROME and PHOTOSENSITIVITY and I was advised to not apply any cream on my face, to stay away from the sun and extreme temperatures. Also she told me that no dermatologyst can help me with my condition in Romania not even the famous Romanian dermatologyst prof. dr. Ioan Nedelcu. In 2015 and 2017 I was seen by a dermatological commission at Constanta and told that I have Rosacea ETR and my condition can be treated in Romania. Also they did not approved my request for treatement abroad saying that my treatement is drug based and not surgical. The opinion of the last dermatologyst from Bucharest is completly different. I really dont know what to expect for my future and who can really help me. God help me to not lose hope and faith. Thank you once again Brady. Have a great weekend. Kind regards
  8. Dear Sir/Madam, I was diagnosed with Erythematous Rosacea in 2014(some dermatologist said it was ETR). Before that date (something like 2011-2012) when my face started to burn daily I was diagnosed with seborrheic dermatitis but always prescribed Rosacea medication. The only thing that worked for me from what was prescribed by dermatologysts was Clonidine that made the burns and flushings from daily to weekly. I have never tolerated for a long period of time a topical cream/oitment on my face (for Rosacea, sunscreen or any other cream). The most tolareted one was for 12 consecutives days. After a few days two things happens: - I start having terrible pains in the skin - the skin saturates very fast with cream even if it was applied only once per day and appears acne and red bumps. So I have to stop appling the creams immediatly as the situation is becoming worse. My skin was ranked by dermatologysts as very sensitive, very reactive, very intollerant, very dry, very photosensitive. I cannot tollerate the heat and cold weather, sun, hot water, steams. Without any cream my face cannot manage the impact of heat or UV radiation without terrible pains too. Recently I have seen a dermatologyst in Bucharest, Romania. I done 4 tests for Erythematous Cutaneus Lupus and the tests were negative. Yesterday I was informed that what is happening to me is not Rosacea and the diagnostic is FACIAL VASCULAR HIPER REACTIVITY SYNDROME and PHOTOSENSITIVITY because some other Rosacea symtoms are missing(no flushing anymore, no burning, no bumps and pimples, no visible blood vessels, etc). I was advised to not apply any cream on my face, to stay away from the sun and extreme temperatures. I know that VASCULAR HIPER REACTIVITY and PHOTOSENSITIVITY are among Rosacea symtoms and in this world are more than 3000 skin diseases. My questions for you are: Can FACIAL VASCULAR HIPER REACTIVITY SYNDROME and PHOTOSENSITIVITY exist as specific diagnostics for a skin disease?(I cannot find any specific information on internet about this diagnostic and I am not a doctor to be able to judge)? I was informed that no dermatologyst from Romania can help me and the only solution is to go abroad for treatment. I wish I could afford to come to USA but I cannot find any finacial support to cover the cost no matter where and who I asked for help. My second question is: Is there any hospital in the European Union where I can have treatment under supervision of a dermatologyst to help me to manage my condition? Is there any medical solution for my diagnostic? Thank you for taking the time to read my message and your feedback. Kind Regards
  9. Hello Brady! Greetings from The Black Sea! You are right. The sad true just received in a message from Renee Marie Stephano(president and co-founder of the Medical Tourism Association) yesterday: "During this process, I learned a life lesson that I now know is the dirty little secret of healthcare: the system is rigged. The industries of health are rigged. They are designed for profit, not for people." You said that rosacea sufferers are mostly centered on their own rosacea issues and that is true in case over the years they have not succeeded to control/ manage their rosacea like in your case. The last dermatologist I have seen in Bucharest told me that she has no miracle solutions for me as an example(the last cream that was prescribed to me Anthelios Ultra SPF50+ from Roche Posay was tolarated by my face only six days ending in terrible pains in the skin of the face). Still fighting everyday here. Life is not a fairy tale cause life is real. Going to a Ozone Center for other medical problems and seeing on the website of the best dermatologist in Romania dr Ioan Nedelcu uses laser, IPL and Ozone as terapies to control Rosacea (http://drnedelcuioan.ro/servicii-medicale/dermatologie-consultatii-tratamente/cuperoza-rozacee) I asked the owner and doctor of the Ozone Center if I can make cosmetic injections with ozone. She told me will not be a good ideea and the best thing to do is to try ozonated olive oil (a brevet that belongs to Nikolai Tesla from 1904. Here is the product recommended http://www.rheumapraxis-altstetten.com/en/oxaktiv-cosmetic-eng) and I am in the day forth(till now is more than all right but on my face no cream passed the test of more than 12 consecutive days. I am praying here that this time to be the lucky one) and counting, hoping for a solution. I tried to search on our website ozone therapy and ozonated oils and there is no article and no information about it (I wish I was the one writting it). There is an article here https://www.amaskincare.com/how-to-get-rid-of-rosacea-top-treatments saying that: "#4 WAY OF HOW TO GET RID OF ROSACEA – THE MAGIC OF OZONE One natural remedy stands alone among the myriad of other natural therapies, both in its therapeutic effectiveness and the enormous amount of scientific study dedicated to its clinical use. Ozone. Ozone is a completely natural element readily found in nature and that can be generated in a pure form for medical use. It is a form of oxygen (O3) that has tremendous capacity to stimulate healthy physiological activity in every organ system of our bodies, all the way down to the level of individual cells. There is so much therapeutic value to its clinical use, that I will dedicate a series of articles about Ozone Therapy. For now, know this. Infused into natural oils such as olive oil and sunflower oil, topical use of these “ozonated” oils is safe, easy, and extremely effective to use as a rosacea treatment. In our experience, clinical protocols that combine the use of ozonated oil with laser treatments is the single most effective way of how to get rid of rosacea." From whom can we know for sure that ozonated olive oil and sunflower oil are good for Rosacea??? The guys from PureO3(http://shop.puro3.com) told me that ozonated jojoba and coconut oils are also good for Rosacea. Also I wish I could try and afford to buy the LaFlore Probiotic Concentrated Serum recommended by dr. Whitney Bowe here https://www.allure.com/gallery/probiotics-skin-care-products but the prices are beyond my current financial possibilities(https://laflore.com/shop-retail). Take care. PS: I will have a look at your diet as in my case no salt, no sugar products, no dairy products, no cereals, nothing made and difference. So the only diet remained to try is a diet without food.
  10. Dear Madam, Thank you very much for taking the time to answer my questions. I am already a vistor of your web-site and your recommendations posted there(since a lady from Denmark named Tanja Eskildsen recommended to read your book). I will keep my eyes on your future career and web-site too. Thank you once again, All the best for your professional and personal life. Best regards from the other side of the Atlantic Ocean.
  11. Welcome Brady, I promise to come with more things I have discovered reading in the last two months(something about grape seeds extract, something about omega 3 from fish oil, something about curcumin, kefir etc) I am very glad that you are always an open-minded person and always open to learn. We should never stop doing that. We must learn and educate ourselves as it look like nobody is going to help us. So the more we know the less we can hurt ourselves.
  12. Dear Brady, Thank you very much for your message and arguments. I am very glad that you can take 3000 mg a day of vitamin C. If I do that I will be burnt alive(my photosensitivity will become unberable). Once again it is swown that we are unique individuals with unique reactions. I have read this aricle of "Mental Health Treatment That Works" (knowing that Rosacea may cause Anxiety and Depression) and I have noticed the same mega doses(http://orthomolecular.org/resources/omns/v01n11.shtml) and Linus Pauling was mentioned in the article. In this article https://rosadyn.com/rosacea/suppliments-vitamin/vitamins-supplements-rosacea-triggers/ is mentioned that if taken in mega doses vitamin C should be taken only in buffered form, Nobody is warrning Rosaceans about that. "High Doses of Vitamin C— Vitamin C is a superb vitamin for rosacea sufferers. It not only strengthens blood vessels throughout the skin, but it stimulates the production of new collagen and elastin which helps to strengthen thin, fragile rosacea skin.The two variables that one must be cautious of is the use of pure, unbuffered Vitamin C (ascorbic acid) and the dose. If you take more than 250 mgs at a sitting there is a good chance that this high dose of unbuffered Vitamin C can cause gastric upset — which in turn, stimulates the release of multiple dilator and inflammatory hormones from the stomach and intestine — causing facial redness and flushing.Most M.D. Naturopaths and Certified Nutritionists recommend taking only buffered forms of Vitamin C (Chelated Vitamin C or Ester C) to prevent gastric side effects and in doing so, one can often take much larger doses — even taking 1,000 mgs several times a day."
  13. Dear Brady, Thank you very much for your feedback and for your explanations about soy. The truth abouth soy maybe somewhere in the middle. Maybe one day we will know the whole truth. I would like to notice another thing. Why are large quantities of Vitamins C recommended for Rosceans? I had the chance to discuss with Dr. Madalene Heng, MD, FRACP, FACD, FAAD from Psoria-Gold with the help of her daughter Siana Cutter about high doses of vitamin C. Dr. Heng said that they may cause photosensitivity and in her book called Below the Surface: A Guide to Better Understanding Acne and Rosacea, 2014, ISBN-10: 1490469583 she said that high doses are common histamine releasers. Also doing my own research I found out that Vitamin C is the nr. 3 vasodilatator supplement (https://drgapin.com/11-supplement-vasodilators-ease-ed). The three ones - photosensitivity, histamine and vasodilatation are known as not being good Rosaceans. So why the recommandations for high doses of Vitamin C for Rosaceans??? Thank you very much for contacting Dr. Bowe for my questions.
  14. Hi Brady, Wow You look fantastic. I am very glad you found a quick fix that works for you. I am not a fan of corticosteroid drugs too. I remember that being in the hospital in the 90s for my seborrheic acne after one week of Prednisone my kidneys were blocked(I was not able to pee anymore) so they stopped giving me Prednison. So we may have different reactions to the same drug. We are all so unique. I have read your book Rosacea 101 many times and I would like to ask you what do you think about this? I also asked on of the MAC members a couple of a few questions after reading her most recent book Do you think there are chances to get a reply from dr. Whitney Bowe? Thank you for your feedback. Take care. Hugs.
  15. Dear Madam, I have read with great interest your new book called the Beauty of Dirty Skin and I have four questions for you (I am very glad to find out from your book that are very specific probiotics that can help Rosaceans and there is hope at the horizon). Reading the chapter 8 of your book I have discovered that you recommend exfoliating the skin with Alpha hydroxy acids( AHAs, also called lactic or glycolic acids) and beta hydroxy acids (BHAs) and also retinoids. My questions are: 1. Can a person with Rosacea Erythematous, with very dry, sensitive, intolerant, reactive and photosensitive skin do that? 2. From the five strains you have mentined in your book as being good for Rosacea which one/ones is/are the best choice for a very dry, sensitive, intolerant, reactive and photosensitive skin? 3. On the internet there is a very interesting article about vitamins and supplements that says that some vitamins are good in small doses rather than big ones like vitamin E (100 to 150 iu), vitamine C(250 mgs) and so on (https://rosadyn.com/rosacea/suppliments-vitamin/vitamins-supplements-rosacea-triggers). In the chapter 9 of your book you recommend higher doses. Are the doses you recommend for Acne or Rosacea? 4. In the chapter 11 of your book you recommend a detox water. I would like to know if drinking alcaline water (made from Coral Calcium and Microhydrinase) can be done while taking probiotics? Thank you very much for answering my questions.
  16. Very very true. It is what you can read in the most recent book called The Beauty of Dirty Skin: The Surprising Science of Looking and Feeling Radiant from the Inside Out – by doctor Whitney Bowe( one of our MAC). A must read book for Rosaceans. The book can be bought from Amazon (click below). Enjoy, learn and apply. A list wit the best Skin-Care Products Infused With Probiotics here https://www.allure.com/gallery/probiotics-skin-care-products.
  17. Dear Brady I tend to not agree with the statment that "Untreated rosacea tends to worsen over time." I am the living proof that the more I tried to find a working solution the worst the situation become. So treated or untreated rosacea worsen anyway. I think some just may be lucky while others are in a vally from hell all the time.
  18. Dear Rosy Friends(how dear Julie B. Campbell likes to call us), Greetings from Romania to all of you! The treatment that I started more than a month ago works for me very well. No more flushing, no burning and no acid sensations. It is so nice to feel great again after so many years of permanent struggle with Rosacea ETR. I am so well that I can enjoy listening to music again, feeling like dancing in every second, start reading books and looking for a new job in European Union. My daily dose is now Coaxil(1 per day), instead of Bromazepam(1) I take Clonazepam(1), Sanval(1) and Romparkin(half). I am so glad that I finally found a solution that works and is no longer necessary to fight each day with Ministry of Health from Romania to have a medical treatment abroad. Easy easy the things will heal. I will never be Prince Charming again but at least I have finally found the peace of mind. Hallelujah. For my skin I use from time to time Dragon Blood Kit from Utsukusy Cosmetics (http://www.utsukusycosmetics.com/indexeng.html) from Barcelona, Spain. I am also waiting for ZZ cream to try it and see what is happening. I will keep you all informed about my trial of ZZ cream. I pray for all of you to find a way that works well for your type of skin and type of Rosacea. If anyone has a question for me I am ready to answer to you with the greatest pleasure. God help us all. Panda hugs
  19. Wow. Good to know that as I am very sure everyone was thinking that Boris Yeltsin skin condtion was caused by Vodka. It happend to me the same thing. Some of my neighbours were thinking that I was an alcoholic because I was severe red all the time.
  20. It is heartbreaking seeing Rosacea organisations spending the little money they collect on other things than research and Roseceans spending money on products that make no difference for them. Sad sad sad. Somehow someone someday should unite these people suffering of diverse forms of Rosacea and find finally a cure. I think all Rosaceans are fed up with trying and hoping. Hallelujah!!!
  21. I agree with: 1. Fewer than half were satisfied with treatment outcomes. - I am among them 2. Conclusion 1: Education is needed to communicate the long-term nature of rosacea and the need for continued treatment to maintain long-term control. - I think they should become members of RRDi as there is so much useful information here but there still is a lot to be done to find a cure. 3. Conclusion 2: Rosaceans should unite their financial efforts in a single organization able to really do a change in what is happening at this moment asap.
  22. Dear Brady Mille Grazie for answering to my inqusitive questions. You are very lucky for not being forced to take any antidepresants. I have the same problem with sunscreens( I have not tried the EmerginC cream yet that you recommended me). As for shaving it was at 3-4 days before now at 2-3 weeks time. I can hardly touch my skin. Enjoy the Pacific Ocean.
  23. From all the dermatologists I have visited I think only one was fair with and told me the true. He told me that my skin is Hypersensitive and Hyperintolerant and he told me to stop using any cream and to wash my face only with cold water.
  24. Wow wow wow. You are a hero true Brady. I have a few questions for you Brady: - how do you deal with heat and humidity from Hawaii(personally I dealt very well with the dry heat from Libya but very bad with the heat and humidity from St Lucia)? - how much do you spent since you have Rosacea?(personally I think I spend the value of a flat with 2 rooms since I had acne and rosacea) - do you take any antidepresants? - how was your experience with the employers? Was Rosacea a disqualifing factor for employment over the years even the employer said that it was an EOE???(In a further message I will tell you what happend in my case)? - can you jog or you only walk daily??? - do you was your face with hot water?(In my case only with luckwarm water, no steams) - can you shave and how often? - looking back how was your life as quality since the day you are fighting with Rosacea?(While I was having acne I was not able to eat any fat and nothing sweet. I went so far with the restrictions that everything I was eating was lettuce with dry bread in the sun - only flour and water). Thank you in advance for your feedback.
  25. My dear friends in need, My drama story started in 1989 as a result of seborrheic acne and between 1989 and 1997 my face was chemically peeled of thousand of layers and after that treated with a corticoid like Flocinolon N cream. As a resullt of that my face was red all the time(actually the colour of my face was the one of a sour-cherry), the skin was very sensitive and I was dehydrating very fast. Between 1997 and 2012 I had no ideea that what was happening to be could be rosacea. At that time I was still able to go to the beach during summer days(I live close to the Black Sea) but I was not able to shave very often as my skin was immediately irritated and I was not putting any cream on my face or taking any pills other than aspirin. In September 2009 a new problem started at the level of the head - the cronic fatigue of the brain. Till October 2010 I had no neurological or psyhiatrical treatment for that. Somewhere in 2012 my face started to burn and flush at a specific hour 6.30 pm for hours. No dermatological or psychiarical treatment worked for me. No rosacea cream was working for more than 2-3 days and no pill was having a positive result. During the last 7 years I had 2 MRIs, tests for hystamine, bacteria, fungi, malabsorbtion, H. Pylori, food alergies, gluten, vitamin D3, heavy metals and so on. Nothing wrong was found. In November 2015 clonidine was prescribed to me by a dermatologist(Mirvaso was also prescribed by the same dermatologist with no positive result) and the flushing and burning became more rare from daily one to 2-3 per month but very severe. The following antidepresants were prescribed to me in the last years: Anafranil, Esprital, Cymbalta, Zoloft, Cipralex, Alprazolam, Abylifi, Fobiless, Mirtazapine, Trittico and the last one I have tried - Seroxat - I was almost ready to die a couple of times in August 2017. I was on the edge of collaps and I was thinking that the best way out for me from this story it will be to commit suicide(my mind was imagining all kind of scenarios from taking all the pills in the house to throwing in Danube with my car or in a deep vally in the mountains). Despair and disappointment were my only daily so called friends. In these circumstancies I wish I was dead as there was no life in my life anymore. Beyond flushing and burning I was having a permanet acid sensations in the skin that I was not even bearing to sweat on my face(Niacineamide was the second medicine that helped me for a while because I was not sweating any more). In the last four years I have send numberless petitions to the Prime Minister and the President of Romania to determine the Ministry of Health to let me consult a doctor abroad( I wanted to see dr. Chu in London). But after years of waiting they finally analyzed my case from June to July 2017 and decided to not help me as only surgical treatments are a priority to be treated abroad according with Romanian law. So you can imagine my psyhological status every day. Two weeks ago I have chaged the psychiatrist after 3 years of variable results at the same doctor and the month of August in which a new psychiatrist tried on my brain Seroxat(while taking Seroxat I was lethargic and not able to wake up from my bed) with very bad concequencies. What is my new treatment? - Coaxil(3 per day), Bromazepam(1), Sanval(1) and Romparkin(half). What is happening to me now is almost unbelievable: no more acid sensations in the skin from the very first hour of the day, no more sweating, I am able to stay in the sun without exageration, I can shave being able to leave from the house in the same day, I sleep very well, I started to enjoy hearing music again and I am almost ready to dance in every second. God what is this? Am I in remision or am I cured? I have 4 different psyhiatrical diagnostics (In Romania a dermatologist will never prescribe an antidepresant) and the opinion of psychiatrists is that I have a persistent somatic delirium disorder and that I, by my fear of a heavy / incurable disease, set off all my splendor. I can hardly believe it as the medicine for that disorder - Olanzapin is the only medicine known today for persistent somatic delirium disorder - taken for two years changed nothing in the picture. Dear friends keep the fingers crossed for me. I'll keep you up to date with what's happening to me. A great weekend to all of you. Hugs and kisses. God help us all.
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