Hello all. I’m so sorry for taking so long to respond but the medicine they put me on, Plaquenil takes several months to start working. In my case it started working after about 4 months. 3 months into treatment my exfoliative cheilitis improved TREMENDOUSLY. I’m talking about an 80% reduction in symptoms. Before treatment my lip peeling and bleeding was so bad I kept getting comments from people that I need chapstick. I should add that I now keep a medical journal of how I feel and I should also add that I have Lupus too. The plaquenil has helped with those symptoms along with Mobic an ...
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Hi there Exxtol, I have xerostomia as well as EC and would be very grateful if you could let us know if any of your Sjorgen’s syndrome medications help your EC. I am particularly interested in whether you think saliva stimulant’s like pilcoapren help the condition in any way, if you have tried those? Hope you feel better soon.   [End]
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Do you eat gluten or some other grains ? Grains free diet seems to help people with Lupus. Also liver flushing and possibly fecal transplant . The problem is in your Gut, and have been there since you were young, even before you were 14, probably thanks to antibiotics you consumed since childhood or maybe because you were not breastfed, or maybe because of medications your mother have taken before you were born, or during pregnancy . WS   [End]
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Hello, I’m a 33 year old male who was recently diagnosed with Sjogrens Syndrome primary w/ some Lupus overlap. Coincudentally I’ve been suffering from exfolliative cheilitis since I was 14. Most of it is fungal related. I’ve probably had Sjogrens since I was a child. Only now do my lip symptoms make sense. The cheilitis was the first to come. Then IBS by 17. Then eye problems by 20. Followed by white tongue/thrush at 22, that would come and go up to the present. I have many more symptoms but these are specific to the ”dryness” part of the disease. Long story short in my case, Sjog ...
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Hi Emma, no problem, glad I could help. I have mouth breathing at night. Very hard problem to stop (have been wearing this ridiculous looking chin-strap thing for a while, which helps a bit). I don’t think it’s the only problem in relation to EC, though. It’s most likely like additive factors which prevent the lips from achieving homoeostasis. I definitely think xerostomia is a big factor in this, though.   [End]
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For possible Seborrheic dermatitis on face and lips, has anyone tried Head & Shoulders shampoo? One could let the shampoo drip over face and lips when washing it off.   [End]
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had thyroid tested multiple times everything is fine. the specialist im seeing thinks i most likely have raynauds syndrome which is also connected to sjogrens. i already eat alot of seeds and nuts will try the sea salt thanks.   [End]
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tested and diagnosed 9 months ago yes all symptoms have continued to get worse since going gluten free. haven’t had any improvements other than iron levels returning to normal. which is why doctors suspect there is something else autoimmmune related going on as well as celiac.   [End]
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thank you so much for taking the time to search your research this is one of the most helpful and informative things i have read. don’t have mouth breathing at night wish it was that simple   [End]
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A medical professional once told me that cold hands and feet are usually a sign of a thyroid problem. Thryorid problems can cause dry lips...not that it’s the cause of your EC. I heard that eating 1/4 cup of sunflower seeds, pistachios, or brazil nuts every day can jumpstart your thyroid. Of course, having a little salt with iodine helps too. I would drink water with idoine enhanced sea salt since salt helps your body absorb water better. You could try these nuts and salt for about a month to see if improves your cold hands and feet. It would also be beneficial to swish salt water in your ...
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emma6 when did you get tested for celiac in 2008 or recently in this year? do you still have joint pain, swollen glands, cold hand and feet, sneezing etc. while on gluten free diet?   [End]
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You wrote that you’ve only been on a gluten-free diet for 9 months? Do you know that it often takes 3-5 years for the gut damage to heal from celiac disease? Of course, if you didn’t consume as much gluten in your diet or didn’t go so long undiagnosed, yoru gut would heal faster due to less gut damage. It’s possible that your gut still isn’t healed. Have you gained weight? Celiacs are usually very skinny and start gaining weight once they start absorbing nutrients better. May I ask if you’re buying gluten-free packaged foods? Those aren’t good for you because they lack many vitamins tha ...
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Hi there, I think that the main reason that Exfoliative Chelitis isn’t listed more commonly as a symptom of Sjogren’s syndrome in the medical literature is because, as you pointed out in your initial post, a lot of physicians are unaware of the distinction between Exfoliaitve Chelitis and chapped lips. So what is actually Exfoliate Chelitis, it just defined as ”chelitis” in the medical literature. I see the same phenomenon in the literature on Exfoliaitve Chelitis in HIV patients. I wrote this in another thread, but I will post it here again for convince’s sake. It attests t ...
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for sure at first i was thinking malnutrition was the cause of EC but it doesn’t make sense to me that they got worse a few months after going gluten free. i’ve been reading and researching celiac non stop for the last 9 months i could write a book on it lol the vitamin deficencies i had are now back in the normal range. i wouldn’t even say my lips are that dry just the constant peeling. im stil hoping treating celiac will bring some improvements even if they are very slight   [End]
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thank you thats the same article i found but also the only one i could find. i searched for ages and that study was the only mention of both EC and sjogrens in the same article i could find. just seems odd that if its a common symptoms of sjogrens i couldn’t find much about people with both, even in forum posts. seems like angular chelitis is more of a problem for people with sjogrens. that is all very interesting, its a good theory thank you for replying. its also interesting that AIDs and Sjogrens are both autoimmune i have a dry nose, mildly dry mouth and no eye symptom ...
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Even if your blood test for Sjorgens is negative, celiac disease itself can cause dry lips. ”Since Crohns disease is the inflammation of the Gastrointestinal (GI) tract, located from the mouth to the anus; dry lips can often occur while having it. The inflammation in the GI tract creates pain throughout the body, which in turn lowers your nutrient intake. This lowers your body’s ability to nourish your lips, which in turn dries them out. Celiac Disease is an autoimmune disorder of the small intestine, which the symptoms can include anemia and fatigue. Vitamin deficiencies often occur ...
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yes its unfortunate that it seems when someone gets one autoimmune disease others seem to follow. will do, i get the bloodwork results in two weeks althought the immunologist said he would still suspect it if its negative. just so frustrating that EC was the first sign of me getting sick 9 years ago but no doctors were interested in helping. makes me wonder if i could have prevented getting chronically ill had they actually tried to find a cause back then   [End]
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yes of course i’m gluten free its not an option with celiac disease. cut out oats and quinoa as well and diary free i don’t have any classic celiac symptoms, so i don’t know how long i had it undiagnosed. was first diagnosed with an iron deficiency then got tested for celiac since it was obvious i had malabsorbion. my ttg iga and dgp iga antibody levels were extremely high and have since come down after being gluten free. i was hoping i would start improving but after 9 months all my symptoms are the same or worse. 2008 - got severe exfoliative cheilitis 2010 - EC had improved an ...
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Hi there, Yes, Exfoitative Chelitis is a symptom of Stogren’s syndrome. I looked up some research articles on Sjorgen’s and apparently a lot of people diagnosed with this disorder develop Exfoliative Chelitis see ”Oral mucosal manifestations in primary and secondary Sjorgen’s Syndrome and dry Mouth Syndrome”. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4793060/ ”The most frequent complaints as obtained from history were[...associated with decreased saliva] were dryness of the mouth in the morning and at night, frequent need to sip water, lip dryness, exfoliation, fissuring,[ ...
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There’s a correlation with celiac disease and Sjogrens syndrome. Sjogrens syndrome causes very dry lips. Please keep us updated on your test results for Sjogrens syndrome.   [End]
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220011 can you tell about your celiac symptoms? have you tried gluten free diet.   [End]
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hey does anybody have both exfoliative cheilitis and sjogrens syndrome? is it considered to be a symptom of sjogrens? my autoimmune specialist is testing me for sjogrens as dry lips may be a symptom of it. im yet to meet a doctor who actually understands the difference between dry chapped lips and peeling exfoliative cheilitis. most havn’t even heard of it. i’ve had exfoliative cheilitis for 9 years, tried everything for it. have been very sick for the last 2 years which have made it get worse. also recently dianosed with celiac.   [End]
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UPDATE fast forward to 2017 After suffering with chronic rashes since 2005 I dx myself with Intertrigo and confirmed with a Dermatologist. Not saying what caused or contributed to this over time. I am still pondering that. Of all the things that helped me along the way... As unknown: Rash improved greatly with consistent use of this Salt Remedy Protocol http://bulldancer.wix.com/seborrheic-derm-cure#!key-tips-and-signs/cfvg But would like to know and deal with the CAUSE! Candida die off or perhaps environmental allergy at our Home,–Sometimes better away from home on vacations don’t kn ...
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I have Chronic Fatigue Syndrome/Fluoride Toxicity. I too had high candida from taking antibiotics. I got better for a while after taking Diflucan, but then started taking biotin which caused the yeast to flare up again. Took Diflucan again and it was better. I too suffer from estrogen dominanace, and take Bioidentical Progesterone. I am limited to how much I can take, as it makes my muscles very weak. I am wondering if you have this issue with the Progesterone also? I am very weird symptoms also with the low Progesterone, very dry eyes and mouth when I sleep, can’t have too much s ...
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Hi MariaSafari, I would just like to chime in on this one: I took 6mg Boron for about 3 weeks, before I identified it as the culprit of extreme emotional volatility and straight out depression. Seriously, it was in fact a severe depression. I do not believe that Boron directly messes with neurotransmitters, so it must have to do with hormones somehow. Did you ever figure out why you reacted this way to Boron? It could, possibly, be an important clue as to why we are sick in the first place. Kind regards -Polarlights   [End]
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Reading your book Bill- planing my diet and personal Candida protocol...Wondering if you recommend Pure Essence Labs Candex. A Metabolic Nutritionist recommended it to me... I’d used before with antifungals and it helped me but I was unsure then that I had Candida-- well, I am still unsure about that... Anyway wondering if you know anything about Candex?...   [End]
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Most anti-depressants contain some form of halide. Also remember that anti-depressants will cure nothing, since they are only ever meant to ensure that you are not a danger to yourself or to other people. I dislike drugs as a general rule because they don’t tend to cure anything anymore -- all they are supposed to do is just manage your symptoms. This is useless to a sufferer or patient because this means that his or her disease will inevitably get worse -- because they are not treating the core reasons for the disease with never a cure in sight. But this is a brilliant business strategy ...
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Thank you Bill for your sharing. I did not know that any or ALL antidepressants contain fluorine, chlorine and bromine. I can find that they contain fluorine. IF you have a reference on that I’d like to know it. I believe I got my fill of fluoride, chlorine and bromine and gave myself hypothyroidism when I was trying to rehab my knees in a warm therapy pool at a sports club for years. But then for many more years before I’d had a weakness for pastries that I think also contained bromine. I know I made many other unhealthy mistakes. I’ve been in repairing mode for the last 6 years ...
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You are certainly correct to assume that canddia can be a topical(local) infection and can also be sytemic(in the blood, organs and tissues). The reason for this is that candida is a dimorphic pathogen -- it can exist in two entirely separate and distinct living forms. For clarity I shall just refer to these two forms as the yeast form and fungal fom. The yeast form infects locally(skin, uterus, intestines etc) because it is a saprophytic feeder(feeds off dead organic matter), reproduces by budding and has delicate hypha. The fungal form can infect and inhabit the blood, tissues and org ...
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Great ! Thank you, jaguar57, I think this might be Malassezia fungus on my skin because it was Dx as Seborrheic Dermatitis. I am unsure how Internal Candida is related but feel certain that it is.... Since 2005 Doctors, bloodwork and GI tests were not very helpful but I must admit I’ve not whole heartedly done the prescription drugs most of them asked me too. I am a little concerned about treating it topically and having it go internal if it has not done so already -so I feel I must treat as both an internal ’candida’ as well as and skin surface fungus. Candex has helped when I’ve t ...
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consider this: the skin is naturally acidic to prevent fungal and bacterial infections but we deadhead humans wash ourselves with alkaline soap that removes the natural acids that take 4 hours to replenish. duhh. There are one or two acidic soaps available if you look hard to find them. Use that or wash your skin with apple cider vinegar after you bath (because it is acidic) Use baby powder also on moist areas of your skin since candida likes moistness and hates dryness. Also cut out the sweets. Sugar feeds candida no matter where in the body it is, or in your case where on the body. ...
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Are there distinctions between Candida Fungus Skin Infection vs Internal Candida? My Genova GI Effects Test did not show Candida! And multiple dermatologists have Dx as Seborrheic Dermatitis so since 2005 I’ve been suffering with rashes that would come and go. I’d been cleaning up my diet for years but went on vacation last spring and fell off the wagon with regard to sweets. For the past years I’d had rashes (I thought were Seb Derm) improve with Salt Baths. I’ve alway suspected candida since once before I took an antifungal and it cleared for a while and antifungal foods have caused f ...
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Had all these symptoms on and off for 12 years until I got about 12 liver flushes under my belt the last 2 years. (I’ve done 16 flushes at this point) No more mysterious disabling fatigue, no more flu like symptoms. I did Andreas Moritz’ way, his book is very helpful. Good luck... HM   [End]
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”that taking DHEA is similar to, yet not as detrimental as, taking cortisone.” I really don’t think that is true. Look at the diagram here http://en.wikipedia.org/wiki/File:Steroidogenesis.svg Notice that cortisol and other glucocorticoids are not downstream from testosterone and DHEA ( not abbreviated in the diagram ) At your age you might like the effect of 10mg x2 per day of pregnenolone, maybe even more if followup tests suggest that. Unfortunately a few people who are chemically sensitive might not even tolerate those low doses. I don’t see why you think there is a ” ...
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I had heart palps on too much dhea even though I liked some of the effects of it. My doctor tested and suggested the dose. I did better on a precursor, pregnenolone plus just 6mg DHEA a couple times per week. Followup tests of those and related hormones were all in the middle third of the ref range. Response to these hormones is fairly individual especially in people with some chem sensitivities. So much more could be said about this, including liver sulfation, zinc, relationship with cortisol, etc. Followup saliva test would be around $125. If your hubbie wants the be ...
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Thank you. Yes, I agree with what you are saying. I am 65, 15 years post menopause and I took 100 mg DHEA per day since May of this year so I’ve taken it between two and three months. Because of my PAST adrenal insufficiency problems, I felt like maybe I was starting to have some adrenal problems again. My husband ordered the 50mg DHEA for both of us because he found on a forum he is on that taking DHEA is similar to, yet not as detrimental as, taking cortisone. (For ten years I took Medrol for Lupus and RA. That is what put me into an adrenal crisis several years ago and I ended up at ...
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DHEA in high doses is DANGEROUS and can produce excessive testosterone in women. I suggest you quit DHEA IMMEDIATELY. I had adverse reactions to a 5MG dose (and I’m a male), I can’t begin to imagine what I would have felt like on 100! What did you take the DHEA for? And for how long have you been on it? Never take medical advice from just any one, consult a doctor or practitioner. People on forums are even sometimes equipped with much better information, you should have asked here prior to taking ANY hormonal supplement. Even the most conventional health websites on the first page o ...
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I’m 65 and have been taking DHEA as my husband’s urging for maybe three or four months now. I’ve been getting sicker and sicker so finally tonight put several of my symptoms into a search engine and find that many of them could be related to DHEA. I’ve been taking 100mg a day for all this time and feel like I’m dying. I had a very severe adrenal crash a few years ago and went to the Mayo Clinic to get straightened out but the past year I’ve been feeling like I’m having adrenal problems again. My husband takes the DHEA and suggested it for me. I wish I would have researched it myself be ...
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reverse adverse borate effects on 5-a reductase T--- DHT conversion with appropriate amount of mentha spicata   [End]
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Hi Gina, I do believe I might have low iodine because all the symptoms seem to match - and physicians never found any deviants in my thyroid hormone blood work. Strangely enough, no one ever bothered to check my iodine levels! The onset of Sjogren’s, feeling extreme cold to the point of hypothermia, extreme fatigu (sleep up to 16 hours/p/day, couldn’t even hold a pocket book without falling over), slight goiter and low libido, all occured at the same time. So I’m willing to give the iodine a go. The only thing I’m hesitant about is iodine causing anxiety in me. Emotionally I’m ...
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Interesting!   [End]
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me too. It has endocrine disruption effects which vary from person to person, there is no set rule that applies to all persons as to how much is too much. It can impact calcium metabolism, but in my opinion there is a better way of accomplishing that without impacting hormonal enzymes, and for that reason I’ll never take any boron again   [End]
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I would search adrenal fatigue / insuffiency, hypo thyroid; to find it most probably related to sjogrens, low libido, depression etc. then start to adress these two glands first. In my case (and a few others I know over here) I couldnt tolerate e.g vit B or A for a while, until my adrenals was up to par. Now no problem with it. If you chose to take iodine (high dosages like 50-100 mg; read the vwt iodine forum) this may cause a detox period, for me it took 3 months. The symptoms of detox will differ related to the issues you have. For me it caused intestinal havoc, flare up of IBS.., ...
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Hi Gina, Well the bromide theory might hold some truth to it, as I’m covered in cherry angiomas! Quit boron totally yesterday - no more depression today... So what would you advice? Bump up iodine first? Then retry boron? Maria   [End]
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my information is basic and simple and true but its up to you to apply it according to your specific situation and needs. be well.   [End]
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Something else going on; my hunch. ”So now I’ve titrated the Boron up to 9 mg, but it’s making me feel awful. I’ve also bumped up the Iodine to 400 mcg. Some bad side effects: - muscle soreness like the flu - feeling nauseous - feeling depressed - over-emotional, cry at the drop of a hat” http://www.curezone.org/forums/am.asp?i=2260716#i Iodine may have this effect at sub-optimal levels, we have seen it several times at the VWTiodine forum. Mg dosages needed to overcome it. search bromide, like here; http://www.breastcancerchoices.org/bromidedominancetheory.html What I did ...
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Here is a start, educational; at any forum you can click on the rated R`s, and it all comes lined up. Success stories, warnings, etc. http://www.curezone.org/forums/s.asp?f=815&c=16&ob=v   [End]
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Cutting it back to 3 mgs per day? That sounds more like a gentle chastisement rather than a defriending.   [End]
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Hi Trapper, Label simply says it contains 3 mg of boron per tablet. But I guess you are male? So your body would break it down different. And don’t forget, I have Sjogren’s syndrome, maybe this causes ad adverse reaction. Maria   [End]
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Signs of poisoning include skin inflammation and peeling, irritability, tremors, convulsions, weakness, headaches, depression, diarrhea, vomiting, and other symptoms. Also, boric acid powder, a common form of boron, is POSSIBLY UNSAFE when applied in large amounts to prevent diaper rash. Boron: MedlinePlus Supplements www.nlm.nih.gov/.../894.htmlUnited States National Library of Medicine i use tons of borax and have taken 9mg of triboron every morning for years. twinlabs was the one that newport recommended from his investigations and thats what i stuck to. i got some other brand ...
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Boron & me are no longer friends. Not only does it make me severely emotional (crying), but also depressed and I’ve noticed a strong increase in anger/irritation too. Plus: the munchies! As this situation is intolerable, I’ve decided to cut the dose to 3mg/p/day, and see how that turns out. Maria   [End]
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Ginagirl, can you plz give me a link to what you call ”RRR” threads. I want to know if I need iodine, I am 31years old but started to notice like swollen area on my right side of the neck :/ and I am always exhausted. I work out three times a week and weight 115lb. Eat healthy and still super fatigue so I want to do a little research before jumping into anything. I am taking chelated minerals which have helped me a lot. But i think I might be needing more then that.Thanks for the help.   [End]
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Hope it doesn’t last too long... Already had to take 1 benzo today...   [End]
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Your going through a detox reaction to the boron and iodine cleaning you out. Take a couple of days off and drink lots of water with a bit of sea salt in it.   [End]
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So now I’ve titrated the Boron up to 9 mg, but it’s making me feel awful. I’ve also bumped up the iodine to 400 mcg. Some bad side effects: - muscle soreness like the flu - feeling nauseous - feeling depressed - over-emotional, cry at the drop of a hat What is this? Herx reaction??? I have Sjogren’s Syndrome. Maria Daily meds/supps cocktail: - 120 mg natural thyroid hormones - 25 mg Seroquel (for sleep) - 10 mg Pregnenolone - 9 mg Boron - 2.5 mg pilocarpine 8x daily - 2.5 mg Dhea - 400 mcg iodine - evening primrose oil, fish oil, vitamine E oil, Vit B + C, low do ...
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