Hello, I just wanted to post here to give an update on my EC after years of having it, and coming on these forums. I still see plenty of old faces. After all the tests I have had, and all the trials and experiments I had done on myself, I have been able to control my EC for over a year. The cause of my EC is contact irritation, I believe the primary culprit was my toothpaste. Troubling though is that toothpaste is not the only irritant that may affect my EC. I can certainly vouch for the fact that sodium lauryl sulphate (SLS) may be a major factor in my EC, as it is found in soap a ...
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Hi, there have been studies that show celiac sufferers often do not always heal from eliminating gluten, and there is some indication that more than gluten is causing people not to heal. I suggest you read this web article: http://scdlifestyle.com/2012/03/the-gluten-free-lie-why-most-celiacs-are-slowly-dying/ I don’t agree with the wording of the title, but please read the article fully and you will see that the majority of people who only go gluten free will not heal their gut dysbiosis. The article includes peer reviewed research and journals so it is worth taking seriously. ...
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I just wanted to say I am following a dietary protocol to heal my leaky gut.I’ve not been active on this board for some time. I would suggest everyone with peeling lips gets a comprehensive stool analysis which includes a fecal secretory IgA, calprotein, Eosinophil Protein test. Why are these tests important? They are important because they let you know the health of your gut, and you want all three to be within normal range. You want to be celiac tested, this is done via a blood test. Why? Because you want to know if you are gluten sensitive or gluten intolerant. A gut healing pla ...
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Are you saying all the problem lies in the stomach and low stomach acid? I did a stomach acid test and it came back fine. How do you account for the people that have cured their problems from modifying their diet and how do you account for tests like inflammatory IgA which can directly test levels of inflammation in the gut ? What infection are you refering to? I was tested for parasites with the stool tests and do not have any, no h pylori.   [End]
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Hi everyone, some of you may perhaps recognise my username from the peeling lips forum. For the past 2 months I have been on a rigid gut healing protocol planned by a naturopath. It involves taking supplements as well as fermented foods and basic meat and vegetables. I am perhaps one of the few people that is treating myself using real data. A stool test I had confirmed high inflammatory IgA which my naturopath says is one of the biggest indicators of leaky gut. My bowel movements are all over the place at the moment, lots of bloating and diarrhea. In fact I went to the toilet ...
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HI longterm, the whole program is done on a juice fast. It is not cheap but it is a once in a lifetime. It would be interesting to see if my EC does disappear completely. All programs have the liver cleanse and colonics, these are a must I think. It must be a minimum 7 days as this is the minimum term required to cleanse the blood. I don’t know how I feel about the Lyme.   [End]
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Hi everyone, well I’m still battling a range of skin complaints although EC is the least of them at the moment. I would like to overcome lichen sclerosus and folliculitis and conventional medicine is not helping me. I am going to attend a detox camp in Thailand which involvs a heavy metal detox, liver detox and daily colonics. I feel this will be more sensisble than trying to do these things at home and also it will involve travel to a new place. I am planning on AT LEAST 10 days with view to do more, I have been saving for some time to fund the trip. Once I’m through the cours ...
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Thanks longterm, that’s not a treatment I’ve heard of before but I’ll be sure to read up on it and post back here in a couple of days.   [End]
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You can see from the photos in my blog that the damage was and still is severe. The hope is that by protecting the area with aquaphor for long enough it will heal. I suppose if you put enough on at night it may offer enough protection. I just hate the taste of the stuff, but should probably get over it.   [End]
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90% but much like you it’s the area that is damaged which I find most difficult to heal. It may be a case of buying a few gumshields and sleeping with them - it’s something I really need to work on and figure out a solution.   [End]
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Yes it does sound like it is a wound and not caused from disease.The tell tale sign is if your lips are sticky and sore when you wake in the morning and stuck together. This is because both ulcerated areas are pressed together over night and when you wake you pull the wounds apart opening up them again. Leaving them alone is a red herring and I’ll tell you why, the areas that are scabbing over may not be the areas that are damaged. The reason they may be scabbing is because of damage elsewhere. MY lip biting was worst just inside the mouth, not the outer part of the lips, but becau ...
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How do you clean your teeth then Quest? -------------------------------------- Whiteshark is right to mention shampoo, toothpaste and mouthwash although I would add soap as a potential culprit also as it does come into contact with the face through the hands, even if the face is not directly washed in it. He’s got the right approach in listing all those potential irritants. Those 4 are the biggest contact irritants for EC in my view especially if the EC is trauma induced from biting. A wound cannot heal if it is constantly being stripped back from irritants. I also think this is ...
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Yeah sorry maybe I shouldn’t have said that about moisturising and leaving them alone because there is merit in it. What I was trying to say is it’s important to remove the irritants but I guess it’s been said enough times. The steroid cream/ointment will prolong the healing because it’s designed to stop the inflammation but that’s part of the healing cycle so it’s needed.   [End]
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I would not leave them alone I would get them manageable so that you do not feel they look bad. There is a lot of misinformation on this board about leaving them alone and moisturising them. It isn’t necessary. As I said there is a sequence of things and the most important is removing sources of irritation such as that found in hygiene products. You could in theory leave them alone for years but if you are applying contact irritants they will never heal because you are constantly re-damaging them. Sorry if this goes against some of the other advise on here. Personally, I have done the leav ...
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Yes I would agree CNM. I found the new skin was crinkly and very delicate. I have symptoms very similar to rhinitis as you describe. A coarse dryness in the nasal passage which was very uncomfortable and random intense sneezing. I’ve only ever been patch tested for contact chemicals and not airborne allergies like dust. The test picked up a few sensitivites to common substances found in cosmetics like balsam of peru and sandalwood oil. I avoided exposure to these substances but still found my nose issues continued. I’ve always suffered from drymouth and extreme thirst. At the mome ...
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Hi Kutiyoung, I’m sorry to hear you’ve been having trouble with this. I’m one of the ones that has had EC for 20+ years (I’m 31) and at my lowest I have felt the same way. My EC is in remission now but due to the nature of the condition it affects everyone differently and even success stories are full of ambiguity because it’s difficult to know actually what made the change. There are many that are cured without ever really knowing the reason. The most important first step is to look at your environment. What is coming into contact with your lips that may be making the problem worse. ...
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Hi Tans, the worst of my symptoms are dermatitis on my face and scalp and I have lichen sclerosus on my foreskin and anus, which means the skin is damaged from friction. LS is more common in women and they say it is an autoimmune condition. I am a guy with it. I can say that yes the antibacterial herb is helping and so are the supplements I am taking with it, which is a vitamin B complex, mineral drops and cat’s claw + magnesium. My energy levels are up but I am still plagued by these skin problems. I have exfoliative cheltitis on my lips also but that is mostly in remission no ...
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Hi everyone, I am seeing a nutritionist who has me on a citrobacter elimination protocol which involves 1-4 weeks of tanalbit and another 4 weeks of uva ursi. She thinks that my gastro issues are related to this citrobacter infection in my gut. The infection was picked up in a GI test I had done. I have loads of skin symptoms which are hard to manage and I want to get on and treat these ASAP. When I finish this protocol she intends to have me take a viral load test and she says that my lysine levels are low which may indicate viral load. She says it also indicates candida overgrow ...
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Yeah I also have/had a lot of dermatitis as well as EC and I don’t think they are separate issues. i think they have the same cause. Sun helps me too. I also use an anti-dandruff shampoo but I think we should both accept that using a product to disguise the dandruff is not solving it, only masking it. Focusing on killing yeast or strategies to kill yeast should not need to factor into your thinking process, it should be something your body keeps under control without you thinking about it. Aim to get to the point where these problems are resolved without having to micromanage them, ...
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The reason I use the term thrush and perioral dermatitis interchangeably is because I see them both as having gut dysbiosis as the same route cause and I also don’t have a 100% diagnosis of either. Dermatologists have not been of much use to me. If you search citrobacter on here there are many examples of it : http://www.curezone.org/forums/search.asp?q=citrobacter+freundii&action=Search what I found so eerie was how many of my symptoms were described by others with this bacterial infection. No specific mention of EC though but MANY skin related issues. GI = gastrointestinal. ...
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I think a lot of your research is well founded and that I’ve come to the same conclusion about candida not being the problem it is made out to be. Ultimately it is a yeast we need to live and is kept in check by the vast majority of people, only overgrowning when not challenged by beneficial bacteria. The point is why is it overgrowing and what can you do? Is it actually the problem at all? A comprehensive GI test will show you exactly what is going on and a good naturopath, but there are people here that just don’t do it. They think they are going to cure their EC from treating it a ce ...
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Hi everyone, well my EC is still in remission but I continue to suffer from my other long term skin issues. I am in the 3rd week of an 8week program which is designed to eliminate a bacterial infection I have of citrobacter freundii. This was picked up on a stool analysis I had which identified it. The prescriptive agents to treat this are : ciprofloxacin tetracycline trimethoprim/sulfa and the natural agents are: berberine oregano plant tannins uva-ursi I have done enough research to know to avoid the antibiotic options and so the routine I am following is prescr ...
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Mainstream Lyme tests are useless because MDs use CDC guideline which are outdated and inaccurate. In my country the national health service (NHS) tested me as negative, but the private lab I used tested me as positive. My EC has not come back, it has improved since removing gluten and improved further with Lyme treatment. Lyme disease and co. are immunomodulating bacteria and as such it’s highly likely such opportunitic yeast (otherwise harmless) like candida then become a problem to the body. I’ve already said this I know. A lot has been said on this board about biofilms (the sti ...
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Hi everyone, I am currently treating my Lyme disease which i believe may be the culprit in the localised and systemic thrush infections I get (mostly on the skin). I am looking for a place that sells pure nystatin powder without a prescription and that delivers to the European mainland or better yet the UK. I would be very grateful if someone can help me. Thanks.   [End]
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Borrelia populate the mouth and in the urinary tract in very high numbers. The bacteria operates by modulating the cytokine response - upregulating certain white blood cells and down regulating others. In short they cause and then feed off of the damage caused by inflammation. I don’t know anything about antibiotics , I haven’t sourced a Lyme literate doctor because I want to try herbs first. Any antibiotic routine will be long term, because this is what is required for chronic Lyme. The trouble is that antibiotics are not very good at treating Lyme especially if you’ve had it for as l ...
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I’m not going to reply to each of you guys, rather I’ll do it in one post. I’m going away for a few days tonight so I won’t be able to reply to anything until at least tuesday. These are the answers to questions as best I can give: 1. What am I taking, how am I using? I am using Stephen Harrod Buhner’s core herbal protocol. Here is the book: https://www.amazon.co.uk/Healing-Lyme-Borreliosis-Coinfections-Rickettsiosis/dp/0970869649/ref=sr_1_4?ie=UTF8&qid=1488555758&sr=8-4&keywords=stephen+harrod+buhner and here is a simplified routine from a follower of his: http://buh ...
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It’s been a while since I came on here and I won’t be coming back for a while after this post either. I am progressing with my lyme disease treatment which involves potent herbal tinctures. My lip EC is now in complete remission and I am currently focusing on the other symptoms which were caused by this disease. As I mentioned in a previous post it is vital that everyone with EC get lyme tested. I recommend ArminLabs in Germany as they offer proper Lyme testing. A lot of mainstream health centres do not offer adequate tests and so many people are being told they are false negative ...
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Do you have any other symptoms besides peeling skin on the lips?   [End]
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Lyme disease has been attributed to many cutaneous skin disorders, you have access to a web browser, why don’t you research this yourself? You took LYMERix? The vaccine was pulled from the market in early 00’s for causing symptoms in recipients similar to, or identical to lyme itself. http://www.yourlawyer.com/topics/overview/lymerix Many class actions lawsuits are still simmering in the works. On the subject of contact irritation/allergic reactions; I have read dozens and dozens of threads on here all claiming x,y,z from either eliminating a certain substance or applying o ...
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Many things have been posted on this board. How do you know the people whom you reference were cured? How are you certain? Are there any scientific papers you can link to these drugs curing EC ?   [End]
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IgE is related to immunity, so if your immune system is creating antibodies to fight off infection IgE levels will be elevated. What I established through an CD57- NK Cells test is that my immune system is already suppressed hence the proliferation of secondary infections or overgrowth like thrush (candida overgrowth) - dermatitis. To take a pill to suppress the bodies intelligent immune response is, I think, one of the dumbest things you can do, considering the body system is behaving as it is FOR A REASON. If you think I am talking nonsense I suggest you research fully what you have been ...
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The jury is still out on my lyme diagnosis as you can see for yourself I posted a topic concerning the results of my lyme test. I tested positive indicating I am harbouring the pathogen within my system. The complications of chronic lyme are numerous as you will see from web research. Symptomology is complicated, sometimes transitory and difficult to explain. To give you my honest opinion right now and a strategy specifically in relation to EC is difficult. Considering I do not have a formal diagnosis from a western medical practitioner it would be foolish of me to rattle off my theory ...
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I cannot say much more at the moment. I’m seeing a infectious diseases doctor shortly. I’ll post updates as and when they come through.   [End]
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I think in your case it warrants an borrelia elispot test from an up-to-date laboratory and a seperate HHV6 test if that is what you think you may have. My nutritionist does think it is plausible for these coinfections to take hold and stay in the body for many years due to the immunosuppression from the borrelia. So I could have one or more of those coinfections, and that could be the reason for my ill health; even my EC. Very worrying that the basal range you mention from your records is considerably different to my lab’s reference range. I suppose there may be some discrepancy b ...
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I don’t understand the % values. My CD57 + NK was measured in ul. What are the healthy cohort ranges for your results ?   [End]
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So I am looking to get my case escalated to an infectious diseases specialist. I think they may be taking this seriously now. Follow up shortly.   [End]
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Honestly? I am always tired. The earlier I get to sleep the more I wake up during the night and the more difficult it is for me to fall asleep. I’ve become accustomed to going to bed later just so I fall asleep easier and only feel partly tired the next day. If I go to sleep early I know I won’t fall sleep till later and I will wake repeatedly. So I’m used to being a walking zombie. I almost never feel refreshed after sleep. I can’t recall a day where I’ve felt I’ve had enough sleep, no matter how much or how little I get. I’ll ask your question to my nutritionist as I’d like to ...
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Found the PM function and pinged you a message. I will ask the question tomorrow when I see the nutritionist. I don’t know what this means at the moment and how it relates to other oppotunistic infections/co-infections. I suppose I should determine this before considering a lyme protocol because viruses are not affected by antibiotics. Thinking logically; surely only HIV and Lyme have the ability to suppress the immune system? (T Killer cells in this case) those viruses do not.   [End]
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here it is continued.. http://curezone.com/upload/_O_P_Forums/Peeling_Lips/T3.jpg   [End]
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Here are snapshots: I can supply you the whole pages privately if you wish. http://curezone.com/upload/_O_P_Forums/Peeling_Lips/T1.jpg http://curezone.com/upload/_O_P_Forums/Peeling_Lips/T2.jpg the bottom part is cut off mid-sentence as it moves onto the next page.   [End]
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Longterm, I appreciate the response. I am a little in shock over this and it doesn’t prove conclusively one way or the other, which is the most worrying thing. I would rather know straight but the test is written in such a way not to fully contextualise the results. The lab is not responding to my request for further information; I suppose they feel they have met their part of the contract and it’s for me to find out more using other means. It does feel pretty horrible. If you are going to check your results make sure it is CD57- NK Cells. Here is a thread discussing the issue. ...
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I have had my lyme disease results back and the western blot section of the test was negative. For the Elispot test, I tested positive for borrelia b. full antigen & borrelia b. OSP-Mix. My T Cells CD3+ (%) was 82.05%. A healthy range is between 62 - 80 %. My CD57+NK Cells tested as 54/ul. A healthy range is between 100-360 ul. The following formulation was made: ’’The result of the CD57 + NM-Cells count indicates chronic immune-suppression, which can be caused from borellia burgodorferi or other bacteria like chlamydia pnemoniae or mycoplasma pneumoniae. ........... ...
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Jordan, I see you are a nutritionist. Can I ask your views on methanobrevilbacter smithii which has been linked to metabolic syndrome (obesity) and what counter measures a person can take to reduce or eliminate this archaea?   [End]
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I make fermented cabbage (sauerkraut) but I have to be honest in saying that I stopped eating it routinely. I may start up again with only plain water without the salt as I preferred it without. I would think most of the bacteria is destroyed from stomach acid whether it be in pill form, powder or real food. I think the actual quantities required are far in excess of what is sold in pill form. There are thousands of anecdotal cases of people managing severe digestive disorders and other disease through 1-2 capsules. What ever changes have to be manageable, consistent and long term.   [End]
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Longterm, here are the graphic results of the GI test I had carried out. There is a lot of data supporting these graphical representations. It’s mainly for convenience and ease of reference. http://curezone.com/upload/_O_P_Forums/Peeling_Lips/S2.jpg If you notice my diversity is low, fecal secreatory IgA is high and I also was told I have populations of euryarchaeota phylum (methanobrevibacter smithii): http://classificationofthekingdoms.weebly.com/archeabacteria-examples.html which does not appear in healthy cohorts (as per the bar graph). My nutritionist thought it necessary ...
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Bacteria works symbiotically which is why the research suggests taking multi-strain is better than taking high doses of one particular strain. You also have to take into account the quality and shelf life of the probiotic and the duration it is taken. What you can’t deny is that the science proves there is direct correlation between gut microbiome diversity and disease. I experimented with ibbns specific brand ’Nature’s Pearl’ and I noticed no change but there could have been many reasons for this. Like you I was put off probiotics, but only for a time. A lab test I had showed my microb ...
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Are you following a probiotic protocol at the moment?   [End]
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The research suggests the best option is a multi-strain probiotic. I am having trouble finding Lactobacillus rhamnosus GG specifically though here in the UK. http://www.ercprobioticenzymes.com/probioticbacteria.html ; here for example, a product contains rhamnosus but no indication of which variety. ---------------------------------- At the moment I’m taking the following probiotics which I will not name at the moment: Product 1 ) 10 billion per capsule consisting of the following strains: Lactobacillus acidophilus (CUL-60 and CUL-21) Bifidobacterium bifidum (CUL-2 ...
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Get your digestive system and hormones checked. Trying to treat this topically will not work because I believe in the majority of cases the problem is internal.   [End]
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I think you should ask to get your digestive system checked out. A TTG antibody blood test is used to test for celiac disease or gluten intolerance. Often they will do a colonoscopy on the basis of a postive TTG antibody reading. Certainly worth asking the question to a GP or gastroenterologist.   [End]
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You are wasting your own time with this lip soaking rubbish. I remember you saying a few months ago that you had partly been diagnosed with chron’s disease. You dismissed that and decided to focus on soaking your lips in salt water. It is painful to watch you completely waste your time with this and try to convince other people to do to same. It doesn’t work.   [End]
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Quite possibly it can’t but it can be managed and my focus is to find out how best to manage it if I can’t cure it. You have to be prepared to study the data yourself, a good nutritionist will help.   [End]
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I am one of the people you mention having had EC for over 20+ years of my life. If I can suggest a few things: 1) get a GI test ; this will show what is going on in your gut, your immunology, digestion, absorbtion and microbiome. It will show if you have gut inflammation at which point you can look at potential causes of this inflammation. 2) have your doctor run a full blood count and have your thyroid and adrenals all tested. Have a full hormone test if you can. Test for b12 and d3 levels. 3) get lyme tested. You are fortunate to live in Germany; the best health care availa ...
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Yes I am taking lacobacillicus acidophilus at the moment, not exactly the same strain you mention there. No adverse effects at present. I’m hoping to post a full protocol of all the protocols I I will be taking shortly but I want to be lyme tested first. I have the test organised for next week and I will get the results within 7-10. My GI test was useful in seeing what sort of bacteria populations I have. Expensive test though not a lot of people will be able to easily afford.   [End]
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Just to make you aware that this is a troll member who goes by various different aliases. His most commonly used alias is ’Carokann’. He/she has been coming on this board for some time to get attention. I believe the mods did something about him/her before but clearly he/she has found a way back. The person has a mental illness and while I ordinarily would think the person sick, in this case I don’t think they can help it. The person has been known to repond to themselves with another alias creating what looks like a conversation between two different people. If you see this subject co ...
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’’as iv always said the anxiety and depression is due to the ec most good dermatologist know that people who suffer from chronic skin conditions also are effected with depression and anxiety.’’ Which is why it’s important to test for diseases which can manifest such symptoms. All processes within the body occur symbiotically. You take the line that eczema seems to just befall unlucky people and that you are one of the unlucky one’s. The optimum condition for the body is health. If you have not been told why your lips are peeling you cannot expect the same people to treat them either. I ...
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I think the same. Just another symptom suppressant, not a cure.   [End]
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I think lips are designed to be durable and not fragile. I’ve seen videos where people have bitten another person on the lip during rough sex or intense making out and there’s plenty of examples online of impact trauma from accidents affecting the mouth area yet there is no obvious EC. In my opinion it is unlikely that any mechanical irritation or trauma of a normal person’s lips would cause EC. Nothing has ever come up in my research to suggest it starts with trauma. I am not convinced my EC was caused from biting and I’ve never seen proof that anyone else’s has either. In the pas ...
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I don’t see why it’s not a serious question? Longterm is trying to establish causality. Sometimes you read or see things and you think hmm maybe that idea is worth exploring. I understand how he thinks. Nothing can be ruled out, we are a forum of EC sufferers with little or not support from mainstream doctors. You have to explore everything.   [End]
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Yea this appears to happen with the state labs, they are incompetent. This is the second time the doctor asked me to take TTG antibody test so if I have to go back for a third time I’m going to have to find out myself why the lab’s not getting it done.   [End]
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Just some further feedback on this issue. Seems my stomach acidity is just fine so no trouble there. STILL waiting on the outcome of my TTG antibody test which will confirm celiac if positive. However, my calprotein level was tested a second time (by the state lab this time) and it came back 17mcg/g compared to the private lab which showed 10mcg/g. Both of these are well within range. A high range would be 60mcg/g - 150mcg/g. From this my doctor ruled out IBD but not IBS, but was hesitant to diagnose at this time without the results of the TTG antibody test. They are taking their sweet ...
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Also to say the warmth was below the naval around the pubic region.   [End]
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Well it wouldn’t be worth me opening a thread or Pming you about something you don’t want to discuss and I do respect your wishes for me not to post anymore so I won’t. I hope this is your answer and that other people find this to be so.   [End]
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Just my opinion. I don’t speak for anyone else   [End]
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It’s good that you tried it and that now you know. In fairness to lily I think she realises now it’s a management technique and you are not the first person that’s tried it for it not to work.   [End]
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Yes I’ve been instructted by the nutrtionist to trial the HCL tablets which I will be doing today or tomorrow. I’ve been told to take one shortly before dinner. Wait 5 minutes and keep going like this until I feel warmth in the stomach. I suppose this will give some indication if I’m producing enough stomach acid normally. p.s have done this test now and I noticed a warmth after just one tablet. Reported the results back. Not sure if this is my problem?   [End]
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Yes I would say if you notice nothing after 4 weeks it’s not your problem. I’m not claiming it’s going to be the reason for everyone’s EC. It’s enough of a concern for me to get the proper stool/blood tests which are fortunately now available. Probably not the best time to start due to the time of year and the amount of food on offer   [End]
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Ok fair enough. So you’ve been tested for gluten sensitivity and it’s all come back negative? Been tested for lyme and it’s all negative? Had stools samples/blood tests and no digestive or hormonal issues? No inflammation detected? No other issues other than EC? Yes it is demoralising for me but I just fear whether you’ve had proper diagnostics with correct feedback. There is a lot to get wrong and you know that as well as I do. I have about as much interest in stringent diet plans as you do, believe me when I say that. I’ve tried a few myself and it’s compounded my probl ...
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Why don’t you post examples of what you mean by ’’dribble and old theories’’ ? I have to look at myself because I don’t think it’s new or positive? ... I am looking at myself and everything so far suggests that EC is at least in some way related to the gut. I’m curious to know why that is or isn’t the case for you? ’’Most are dribble and equate to nothing’’ .. Give examples of what you mean ? You say I’m about alternative ’’stuff’’ and ’’doing diets and this and that’’ ??.. I’ve eliminated gluten. That is the only lasting change I have made so far to my diet and my lip p ...
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I think you are the one posting negative crap to be quite honest and I take offence to that. I and many people are trying to get to the route cause of our EC, you clearly have given up and you cannot explain why you have EC but you claim you have the answer for everyone. You try it, it’s your idea.   [End]
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It would be useful if you could post photographs of your lips. You don’t photograph your face only the lips, like I have done.   [End]
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Are you gluten free now ? Do you want me to post results of my GI test, it’s about 5 pages worth I can post in .jpg format.   [End]
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My vitamin d3 and b12 are within range, so I think these are not preventing absorbtion of other vitamins. I have not had my zinc tested but I will be soon. I think it’s important to find out what’s going on before taking supplements, which is why I ordered a private GI test which showed some concerns. There is no point taking supplements if the gut is not healthy and there is malabsorption. I don’t avoid any foods so I’m not missing out on anything. I’m waiting on a blood test for the gluten yes. The reason it’s taken so long is because some of the tests I am having on the stat ...
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If you can relate to my lips with your own then I’d say it’s worth another shot. I have noticed on here that not everyone’s EC looks the same, some people do not experience the same redness on the inner mouth as I did, although I only became aware of the redness when I started photographing them. Living with your lips you forget what they really look like unless you can look at them up close without movement. It’s surprising what I started to see by studying the photos. I looked for a long time without realising the redness was not just my natural lips, it was not normal. I think I ...
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Sorry about missing your question there. Here’s an updated pic from today: http://www.curezone.org/forums/fm.asp?i=2347391#i   [End]
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Thanks for sourcing that info. So perhaps I have IBS/gluten sensitivity after all. If I am full blown celiac I would not be surprised. All of this certainly explains why my lips improved as they did eliminating gluten. I can honestly say my lips have never been better as they are now. I’ve always wondered why the redness/inflammation on the inside of lips kick started the drying and peeling process all over them, and why that was. So perhaps what I was seeing all along was the condition of my gut which was/still is inflammed. My GI test was done not long after I stopped the gluten but ...
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My inflammation and immunology readings as follows: Calprotein 17 mcg/g Eosinophil Protein X 0.5 mcg/g BUT Fecal secretory IgA 517mcg/g which is on the high end, so this is why they are flagging it. I don’t understand why though as it appears to be a transitory reading (snapshot in time). https://www.gdx.net/core/interpretive-guides/GI-Effects-IG.pdf In otherwords the gut is changing and responding all the time to what we eat. So it is misleading to rely on a secretory IgA reading alone. There are many sources that suggest higher levels of secretory IgA is healthy ...
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I got some of these given to me by a nutritionist but I haven’t taken them yet. If stomach acid is low I want to know why? My GI test also picked up some irregularities but nothing major. What came up is that there higher than average fecal secretory IgA and my gut has a low population of variable bacteria (so need probiotics). My Beta-glucuronidase were low (these are gut enzymes) althougth within range. More to say but I have to go out   [End]
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Make sure you report after stopping the soaks please   [End]
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When you stop the soaks can you say how your lips behave then? I can’t see how an active treatment can be any more legitimate than a lip balm or something like that. It’s not about managing or suppressing EC symptoms it’s about finding out why it happens.   [End]
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It’s something they will likely test now I can’t even have a urine test due to excessive creatinine, so despite the test not being sucessful it has given another clue. The doctor I see on monday will most likely think it’s a one off, but if you take into account my history and excessive thirst which a family member can testify is sometimes alarming, perhaps the doctor will have reason to re-consider. Certainly the EC would automatically make a person think it’s dehydration...I also have what I think are extremely heavy/blue dark circles under my eyes which I think are a good indicator. ...
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I’d like to do this but without some indication of what is wrong with me I don’t want to make any more dietary changes or do any detoxes. They couldn’t even do a nutritional urine test because ’’I was dehydrated’’ even though I followed the instructions to the letter and drunk the exact amount of water before doing the sample. My creatinine levels were high (out of ranged). It’s not the first time either, my blood test results commonly show high heamoglobin and I’m asked if I am dehydrated at the time of the test and I say I don’t know. I drink more water than most people, I’m always d ...
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Hi my name’s not Terry but thanks for asking about the coeliac stuff. I am getting results back on the 12th. If you have been tested and it’s come back normal you can rule it out I guess.   [End]
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Longterm, thanks for posting your information. I will make reference to this when I see the results of my lyme test. How did you leave things with the infectious diseases doctor? It appears that is a major question mark unanswered and could potentailly be the source of a lot of your outstanding symptoms? I am looking at the MELISA european lyme test which appears to test borrelia afzelli, borrelia garinii, borrelia burgdorferi sensu stricto. In addition to this there is the ’borrelia western blot’ . Here is the link: http://www.biolab.co.uk/docs/mellyme.pdf the lab is based i ...
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I can’t devise a diet plan without hard data. I NEED to know what is going on first. My life is on hold at the moment, I need empirical data before I make ANY changes whatsoever. The gluten free has helped but that’s as far as I’m prepared to go at the moment.   [End]
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It would be useful to know whether it was a false positive reading to lyme you may have had or a positive reading to lyme your body is still fighting. If it turns out you still have the bacteria that is the cause of your EC without a shadow of a doubt and this is the case for me also. We have to find a test which is proven to be reliable and is not picking up disease which is occuring elsewhere. Everything I have read about lyme disease testing is confusing.   [End]
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Still looking good but still much like the photograph, the peeling has reduced dramatically but it is still happening and it’s not natural exfoliation like normal people experience. I wish I could say it’s gone completelty but I can’t.   [End]
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Lichen sclerosus is an autoimmune skin disease which causes scaring. It can occur anywhere on the body but most commonly the male and female genitals. It has been linked with lyme, hence why I’m not focused on lyme. I’m not prepared to have my foreskin cut into (similar to a lip biposy) to confirm the presence of lyme at this stage because there are less invasive biopsies available. https://en.wikipedia.org /wiki/Lichen_sclerosus ’’Both bacterial as well as viral pathogens have been implicated in the etiology of LS. A disease that is similar to LS, acrodermatitis chronica ...
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This is why I’m not sure gluten is the only factor. I’m certain something is not quite right, or it may be my body detoxing from it. It would be useful to have that information on lyme. I was just told a lyme test done privately would cost £750, so that’s $950 equivalent. No explanation for why it is so expensive or it’s accuracy. I’m hoping what I’ve already paid for will have information similar to that genome website but surely DNA mapping is only useful if you have a gene mutation or something like that? I’m not sold on gene therapy type stuff, I think it’s a marketting fad ...
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Sounds like a shit and ignorant doctor and that is the reason I’ve lost almost all faith in allopathic medicine because they are like drug dealers, they have a script in their heads they are running through trying to match up symptoms with ’products’ on offer and this is drummed into them in training; ’’if we don’t have a product for it it doesn’t exist.’’ It is written online that there is not enough money in lyme treatment for them to spend money on further research so antibiotics with a success rate of less than 25% appears to be the best on offer from them. My private nautopath/nut ...
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Consider lyme testing in that case. It’s amazing the doctor’s give out thyroid hormone but take no real interest in why not enough tyroxsine is being made in the first place. When it is overworked they often destroy the thyroid completely with drugs or cut it out leaving a person reliant on tyrosine for the rest of their life. It makes sense from a business perspective because the person has to be drugs. If you can, see if you can find a naturopath/nutritionist and get some lyme tests done. All I have confirmed from diagnostic tests is that I have an autoimmune disease (lichen scle ...
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Thyroid and peeling lips come up routinely online with only small amounts of research. What causes your thyroid issues though? It’s worth finding out I think. I noticed a change in the lip peeling very quickly BUT I know my own body well enough to know that this may not be the only factor, or it may only be an irritant. I still have plenty of other skin issues that have not resolved from diet. I think everyone here should get tested for lyme disease if they can, and this is something I’m hoping to have in the next few weeks. Unfortunately the tests they have at the moment are not t ...
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I’m fortunate enough to have enough money to spend on tests for deficiences/toxicities which ideally everyone here should have. Consider the fact that I have a diagnosed autoimmune disease, that being lichen sclerosus, and many autoimmune diseases occur from either deficiency or toxicity. What I want to know is whether gluten sensitivity causes the peeling and other skin ailments or whether it only irritates whatever else that is causing the skin problems. My gut feeling is that it is the cause of inflammation but there are other triggers as well. There are so many food and envir ...
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Hi everyone, I have been using the peeling lips section of this board for sometime and have had great success following a gluten free diet which has eliminated a lot of the exfoliative chelitis I was experiencing on my lips. I was browsing over old papers recently and got reading about an allergy patch test I had done in 2008 where I tested positively for colophony,myroxolon pereirae, abitol and sandalwood oil. The abitol and sandalwood oil are relatively easy to exlcude from hygiene products but I’ve become aware of the fact that colophony and myroxolon pereirae (balsam of peru) is ...
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I’ve never taken accutane and my EC is pretty much lifelong since I was a young child. You can see how many other symptoms I have from past posts. My rectal itching has improved/stopped now which really was a secondary way my body was telling me something is not right. I’ve a load of other skin problems which have reduced. I am still getting flares occasionally but they are mild. For example I had a soy sauce yesterday which was gluten free and I’m thinking that may be caused mild inflammation because I get the anal itching/irritation and the lips are more drier. As I say the gluten fr ...
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Thanks so much. Perhaps this might help you go gluten free as well?   [End]
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Thanks. I’m sorry to everyone about over reacting yesterday but it was a culmination of a lot of suffering and stress built of over years of having this and basically being told I’m deluded etc. I know people will want to see on-going progress pictures which I will post weekly.   [End]
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I’m still eating rice and gluten free pasta so yeah you may be right that it will speed along the process. At the moment I’m exchausted by researching so much about all this stuff I just want to get some life back before I start again. That’s not to say I don’t have a lot of the information in my head already, I just don’t have the enthusiasm at the moment. What’s most important to me is the results of my nutrition test, because I’ll then be able to add in supplements into a new diet plan.   [End]
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I now eat gluten free alternatives which aren’t necessarily good for you either. I’ve noticed that soy affects my lips negatively but I’m hoping this will not last once the gluten works it’s way out my system. I’ve not changed my diet or added supplements yet because I’m waiting to get results of a nutrtion tests I had done and the results take a while. There’s little point rattling off what I eat in any given day because it’s not necessary for anyone to follow. The most important thing is that you remove gluten and you thoroughly research items you eat every day and make sure they ...
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So shut your f***ING mouth   [End]
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I’m losing it because you are a piece of shit and you think you can come on here and blast my thread thinking you know what is and is not cured. Fool I have suffered with this my whole life I have walked down all the roads you have ten times over. You don’t tell me what is and is not cured you f***ing scum troll. Man if I could physically get to you I would because for you to come out with that trolling NOW blocking me from even getting acknowledgement I am cured, stopping me from getting any kind of recognition for curing myself, it robs me of everything + everything I have already lost. ...
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I applied nothing the last 1.5-2 weeks. I like them and get them in contact with water and they don’t go white. The redness is just redness, it does not cause the outer skin to exfoliate!   [End]
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YOU DONT TELL ME, I KNOW YOU f***ING IDIOT THEY ARE MY LIPS!. YOU DONT KNOW WHAT RAW MEANS. IT MEANS STICKY/INFLAMMED. THAT NO LONGER HAPPENS TO ME NOW IT IS JUST DISCOLOURED. YOU f***ING SCUMBAG   [End]
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Thank you so much I want to start the liver flushing ASAP! I will post weekly photos. Thank you so much for help. Sorry about boiling over but that idiot hit a nerve in me. It’s years and years of living with this only to be told again you’re wrong. It’s enough to make me extremely angry.   [End]
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