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Wednesday, 2 July 2014

At a loss

Hey guys, so I thought I would update you on how I'm doing now. Well let's just say I'm not good.

After I was discharged from the hospital I asked about the antibiotics for my skin infection but was told I didn't have one and that it was "just eczema". I couldn't be bothered to argue so just thought oh well... let's see how I get on without them.

I was doing pretty good, getting over the allergic reaction and then this Sunday just passed I was so ill. I kept falling asleep as I was completely devoid of energy, I couldn't do anything for myself. My skin was back to being a full body warm, weepy, smelly mess and I could tell infection was present again. I didn't go to the doctor's until yesterday morning where I was issued with an antibiotic, coincidentally the same one I was given whilst in hospital, so I hope my body doesn't become immune to it. Recently there have been news stories about how our antibiotics will no longer work against infections soon because our bodies are just becoming too used to them, and this worries me a lot because of the amount of infections I do contract, and the amount of times I've been told to stop taking them halfway through a course.

For some reason I also asked for Dermol 500 because I know it has antiseptic properties and is something I've used frequently in the past. Oh what an idiot I am. I applied it last night and it was as if my skin was trying to expel it. I can't really explain it but half an hour or so after applying it, the surface of my skin became slick again with the product and it was unbelievably itchy! Also this is even more bizarre but I could taste it in my mouth! I knew my body had developed sensitivities due to TSW but I can't believe how it has reacted as of late... first with the penicillin based antibiotics and now with other creams. I know my body has become intolerant to an extent of white soft paraffin too, and also doesn't seem to like many of the natural products I put on either. It seems to be pot luck with them. I've been trying out Shaloah Skincare Calendula & Borage sooth & repair cream which sometimes works, but not always as well as some products from Salcura which I also don't seem to have had great success with but I may persevere...

Moisturiser withdrawal isn't an option for me right at this moment because of how much my skin is shedding and how thickened it has become from over-scratching. I feel like my skin needs to be fully quenched and hydrated but I'm struggling to find a way to do that.

I'm just so annoyed that my skin has been allowed to get to this state and I truly despise myself for not waking up sooner to the perils of medications.

I feel at a loss right now and don't know how much strength I have left to fight this. I just feel the need to complain and get my whinge out there so sorry if this post reads like one big ramble.

I also can't be bothered with arguments as to whether this is a "year TSW flare" or skin infection as I now know my body well enough to distinguish what is going on.

I hope everyone else is having a better time with their skin.

24 comments :

  1. Jenny, I'm 99.9% healed one week past my one year mark. Very simple, nothing on the skin but dss baths every 2-3 days. Tri-Fortify brand Liposomal Glutathione for energy. Six to 10 grams msm for cellular repair. I feel like Forest Gump when I say "Jenny" in my head lol. Seriously though, if you want to heal quit putting toxic crap on your skin.

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    1. Hi Dan, had a feeling you'd say MW! I am doing it for the most part but I'm in so much pain. Been starting to have DSS baths recently too.

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    2. I basically used 3 things which all have their own antiseptic properties but found colloidal silver didn't do anything but irritate my skin. It worked great on a herpes blister though when I had one outbreak in the last year. Basically the dss baths have good antiseptic properties as well as fantastic healing properties. I would occasionally just use two cups of organic braggs acv, or 1/2 cup bleach in a bath if I felt my skin really needed a good antiseptic, but would do that rarely, especially the bleach baths. ACV is a great fungus killer too and also balances the pH on the skin. Good to take a tablespoon a day internally as well. Water diluted tea tree oil on small skin breaks several times a day when needed. You should definitely be taking probiotics. I put myself on antibiotics about 4 different times during my tsw but still not sure if I needed to all four times, but it was difficult to tell. Probiotics are very helpful if you are taking antibiotics to help your body replace the good flora. Even when you are not taking antibiotics as well, unless you eat a super good diet with zero sugars.

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    3. Cheers to all that that, Dan. I've been having a lot of success using colloidal silver for my herpes outbreaks, also, along with other natural products (like L-lysine). ACV is a great idea for an occasional bath, just like Quinn stated in his comment. Hoping you can get through this infection more quickly and comfortably, Jenny!

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    4. Thanks Stacey. You are right about the L-lysine. It's a great herpes outbreak prevention supplement and should be considered by anyone in tsw. I only take it when I feel that special "twang" that tells me I'm about to have an outbreak, due to having gallstones. Not safe to take daily if one has gallstones. But if you don't have gallstones it can be taken daily as a preventative. It's worked well for me just taking it when I feel I need to for a few days. I was very concerned about getting eczema herpeticum which I never did thank God! I think Jenny would be much better off by now if she had stopped moisturizing many months ago, and did dss baths. But it's never too late and the later stages of tsw one is in the easier it is to do MW.

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  2. For infection, I just use colloidal silver. It's the only thing that works. Are you still on the immunosuppressants?

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    1. Thanks Jen, I keep hearing good stuff about colloidal silver so will have to look into getting some. No I stopped taking immunos last August because they made me too poorly.

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  3. Hi Jenny, Have you tried Dead Sea Salt baths (like Dan mentioned above)? They will naturally help to keep infections away. Unfortunately, the problem with antibiotic medications is that they kill good bacteria along with the bad. Killing the good bacteria can wreak havoc on your body. Have you been taking probiotics to help keep your good bacteria count in check? I would really recommend using probiotics regardless of whether or not you're using an antibiotic. Lots of love and hope you heal quickly from this.

    http://itchyskinjourney.blogspot.com

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    1. Hi Stacey, yep I've just started trying out DSS baths but my infection was still present so saw antibiotics as my quick fix option. I'm not taking probiotics but probably should! Thanks so much <3 I hope it blows over soon. I have far too much stuff coming up over the next few months that I'd like to be in good health for.

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  4. Try organic apple cider vinegar in your bath water or put it in a spray bottle and spray all over your skin...it stings a lot but run some water on it to ease the sensation.

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    1. Thanks Quinn. Will see about getting hold of some!

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  5. Hi Jenny, Your story and your blog is amazing you, are so brave and I am so sorry to hear you are in such a bad way. I don't want you to post this, I couldn't go through your contact page as I didn't have the email app set up, I'm glad or I would not have read this update. I was only ,ooking at your blog to see if you might want to review our Calendula Cream. It is a water free emollient with anti-inflammatory calendula, water free means no preservatives or emulsifiers, so it is really good for very sensitive types. We have had many amazing customer reviews and just won Gold in the free from skin care awards problem skin category. I would just like to send you some, maybe it will help. Read about it on our web site under calendula cream section. If you would like some just email me, I will send it for free whether you want to review or not. I will be watching your blog to see how you are doing, I really hope the infected eczema is clearing up, for what it is worth I find salt water the best thing for healing infections, it is so underrated, obviously I don't know how comfortable it would be in your situation. Thinking of you anyway, Best wishes Vicky Lyons

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  6. But what about this study Vicky?

    http://www.ncbi.nlm.nih.gov/pubmed/10086859

    Many people going through tsw have discovered that NOT moisturizing makes a significant difference in healing times, severity of the condition itself, and in general, comfort and manageability of their steroid induced eczema.

    Also, your website's claim "Our waterless Healing Calendula cream contains soothing lavender essential oil to soothe the itch." is not true for all people. Lavender is a common skin irritant for many people.

    I applaud your effort to provide natural skin care products, and know firsthand Calendula is a very effective healer, the link above shows why people shouldn't moisturize long term. But even if used short term while in tsw, all moisturizers will irritate the skin and prolong healing, even though it may appear they are beneficial in the short term.

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    1. Hi Dan, and Hi Jenny, I am so sorry to hear in you latest post things are not much improved I hope things turn around soon, and I hope this discussion is helpful.

      Dan, do you have access to the full text of the study you flagged up? I am very interested to find out what sort of moisturiser was used. I am pretty sure it would be an emulsion of water and emollients held together with emulsifiers as this is a 'conventional' moisturiser. If this is the case I would expect it to have a detrimental effect on skin barrier function and therefore make skin more susceptible to irritants. This is because you outer layer of skin, the stratum corneum, is a delicate balance of lipids and water. I have argued for some time that applying emulifiers to any skin is a really bad idea. This is why I have been promoting moisturising, and cleansing, with 100% natural oils. Natural oils contain the same fatty acids used by your skin in the stratum corneum they neatly repair breeches without disruption. I would be amazed to find any study finding this sort of moisturising detrimental.

      I don't understand why moisturising is a bad idea when in TSW, can you explain please and do you believe moisturising with natural oils has the same outcome as using coventional moisturisers? I am very interested to learn more about TSW.

      I hope those wrestling with the terrible dilimma, such as Jenny, about whether to moisturise or not have the benefit of understanding how different moistuising products and indeed simple carrier oils work on the skin, how they affect skin barrier function and how skin barrier fuction works (googling stratum corneum is a good idea). I really feel this is important when making an informed decision, and an informed decision is really necessary at a time like this.

      Also, to answer you point about lavender, I agree there are people allergic to all sorts of natural compounds, but fortunately there is a huge range of options including simple pure oils like virgin coconut, olive etc. I always advise patch testing any substance to check for reactions and I strive to alert customers to the potential allergens in my products, I take on board I have maybe not emphasised the essential oils issue enough, I will look at this. I am thinking about these issues as I consider extending my range of products too.



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    2. Hi Vicky, I don't have any other info on that study other than the link to what you saw. No doubt a moisturizer that has an emulsion is more damaging to the skin than one without it, but that doesn't necessarily mean moisturizers without emulsions are good to put on the skin. Nor does it change the fact that people are led to believe they need to moisturize their skin when they really don't. I believe that using a moisturizer that doesn't have an emulsion ingredient in it is better than using one with it, but using no moisturizer is even better yet. As to seeing studies on whether this sort of moisturizing is detrimental, see this study on olive oil, which is the base in many "natural" moisturizer products:

      http://dermatologistsblog.com/atopic-dermatitis-eczema/effect-of-olive-and-sunflower-seed-oil-on-the-adult-skin-barrier-implications-for-neonatal-skin-care/. Also see: http://www.ncbi.nlm.nih.gov/pubmed/22995032. And, check this one out: http://www.ncbi.nlm.nih.gov/pubmed/10086859.

      Why promote moisturizing anyway? It's harmful, not helpful. The only thing one needs to understand is that applying any moisturizer to the skin weakens the skin barrier if done for more then a couple weeks or so. See http://mototsugufukaya.blogspot.jp/search/label/Is%20moisturizing%20really%20a%20help%20to%20cure%3F

      During tsw the skin is extremely hypersensitive and anything put on it makes the itching that accompanies tsw far more intense. That is just one reason why people shouldn't put anything on their skin during tsw. Another is, moisturizing the skin basically tricks the body into thinking it doesn't need to moisturize itself. And there is more as well that I don't have time to go into here.

      Patch testing is useless during tsw due to false positives that occur due to the effects of tsw.

      Let's distinguish the hype from the truth. Hype: you need to moisturize your skin for various reasons. Truth: you don't need to moisturize your skin because your body has the ability to do it on it's own, and trying to do it for the body only interferes with this natural process and weakens the skin barrier in the long run, even in people with healthy skin that aren't in tsw.

      I do lump all products together when I say moisturizers. But it really doesn't matter. Putting stuff on your skin other than pure water is not good for your skin no matter what it is with few exceptions. There is no need to establish what works for anyone because what works is allowing the body to do it's thing, not treat symptoms and make the situation worse. People who believe they need to moisturize have simply allowed themselves to be brainwashed. No disrespect meant, that's just the truth as I see it. It just makes logical sense to me.

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    3. Why do you think very few men moisturize their skin and don't have a need to? And most all women moisturize their skin and feel they have a need to? Women think they need to moisturize because of conventional wisdom from the medical community (same people that promote ts), and because they believe the hype they see on the television and read on various publications. And, because they have compromised their skin barrier by applying various moisturizers to their skin most their lives. Problem is, it's like ts. The skin just gets worse over time. Allow your skin to function on it's own and the "illusion" of needing to moisturize will eventually be gone. Continue to moisturize and the skin will continue to have problems and you will think you need to moisturize. Just like ts. Again, you have to ask yourself why men have soft skin all their lives without moisturizing to see my point.

      I believe there are natural oils one can safely use on their skin only if they use them short term, as in a day or a few days, but that's about it. These are just my opinions but I try to back them up with studies when possible. Itsan made a claim a couple of months ago that they have never seen anyone heal from tsw in under a year. I know one person who healed in 9 months, and I healed in just a year and a couple of weeks. The difference between us and the many hundreds of others in tsw is we didn't use moisturizers. The rest are all still struggling with tsw due to moisturizing and keeping their skin barrier in a weakened state. It's all very obvious. I've been telling people this since I did MW at the beginning of month 3 of my tsw when I could see moisturizers like Calendula and Shea butter were very effective short term but then the skin worsened after a few weeks.

      As for Lavender, it's a well known skin irritant, much more so than most other plants. But, I'm open to changing my opinions if anyone can disprove what I am saying. Anecdotal evidence shows I'm correct, as do studies done by people who aren't selling products, or doing studies with a predetermined outcome in mind for the purpose of selling products.

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    4. After writing this I decided to ask Dr. Fukaya if he agreed with me as to my idea that moisturizing has negative effects on the skin not only with people in tsw but also people with healthy skin and his answer is interesting. See my question to him and his response at the bottom of this article here: http://mototsugufukaya.blogspot.com/2014/07/topical-steroids-cause-two-kinds-of.html

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    5. Hi Dan, and Hi Jenny, hope you are both having a good day today.
      Wow! Dan, this is very interesting information thank you for taking the time to answer in such depth. I will answer your points one by one

      Regading these studies:
      http://dermatologistsblog.com/atopic-dermatitis-eczema/effect-of-olive-and-sunflower-seed-oil-on-the-adult-skin-barrier-implications-for-neonatal-skin-care/.
      Also see: http://www.ncbi.nlm.nih.gov/pubmed/22995032.
      And, check this one out: http://www.ncbi.nlm.nih.gov/pubmed/10086859.

      The first two links are regarding the same study, which makes fascinating reading, The third link is the one we discussed on the 13th, so I won’t go into that again.

      The study about sunflower and olive oil found that olive oil disrupted skin barrier function and oleic acid is the suspected culprit. Oleic Acid is very prolific in natural oils and, although this is a very small study I think this could be the start of a big shake up. I have had doubts about Oleic Acid for some time because it is extracted and used as a penetration enhancer (a substance which weakens the skin barrier to aid topical application of active ingredients or drugs) I looked some years ago for studies about it but could not find any negative findings, I have however reduced it in my recent formulations and listed a complete fatty acid profile on my product pages to help those with an interest make an informed choice. While this study goes some way to confirming my suspicions, and explains why many people don’t get on with olive oil for the oil cleansing method, it does not prove that all moisturising with all natural oils is detrimental, in fact it found that the sunflower oil improved skin barrier function.

      The other article you mention:
      http://mototsugufukaya.blogspot.jp/search/labe /Is%20moisturizing%20really%20a%20help%20to%20cure%3F

      Is again interesting and proves that excess moisture in the skin in detrimental. The article concludes that excessive moisturising could be detrimental. Again this is food for thought and could be part of a well over due renaissance. However it does not mean that a person suffering from dry skin and the associated reduced barrier function will not benefit from moisturisation, or that dry skin, left unchecked will not cause problems. It also proves that skin barrier function is affected by environmental humidity.


      I totally understand your point that skin left to it’s own devices will self balance. I think this makes perfect sense and I am very impressed by your own success and passion. However, I do think that in this modern world skin is rarely left to it’s own devices and unless we avoid situations that reduce skin barrier functions like using soaps, detergents, hot baths, swimming, central heating, windy weather, reduced humidity, etc, we may need a moisturiser. I believe most people would find it difficult to avoid these factors, so there is a place for moisturisers in our society and I still believe natural, water-free (and therefore emulsifier and preservative free) are best. I do appreciate the situation is different for those in TSW.

      Wrote too much had to load in 2 parts - Sorry!…

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    6. …I understand your reasoning that those in TSW may well benefit from refraining from all topical treatments, but I would presume they would have to be careful to maintain skin barrier function by avoiding detrimental activities, not just to avoid excessive moisture loss and resulting dry skin, but to avoid invasion by pathogens. I suspect each person is different and everyone has to find the best solution for their own skin type and situation. I don’t pretend to understand why you found moisturisers worked for a while and then worsened the situation, but I wonder if you became sensitised to ingredients like Calendula and/or shea butter (maybe just temporarily) I admire the work you are doing to inform sufferers and I hope this discussion is helpful, I hope it gets picked up and proper research done. As we all know, as long as the big pharma are selling steroids, this is unlikely, so I hope people like us keep talking about it.

      I don’t think false positives make patch testing useless, as the subject would be seeking a negative. Again it’s surely a matter of being aware that things can change with out warning when in TSW and being cautious. From what you have said, I would be more concerned about getting a negative and then becoming sensitised. Maybe someone in this situation who did feel they need to moisturise would benefit from changing their emollient regularly -? Just an idea. I will be writing about this on my site as I think it is really important to alert people to this possibility, even though it may put some people off buying my products.

      Regarding men and moisturising. I think men look more weathered that women and this is the look that society accepts. I don’t think your average woman wants the the skin of a man the same age. I think this says more about our society’s attitudes than it does about skin health.

      I respect your belief that all natural oils are only safe short term (for people without TSW). I currently disagree, but I will be keeping an eye out for new information, especially about oleic acid. I had a baby about the time the study you flagged up was published and I have been a bit out of touch. You have certainly fired me up and it is great to be hearing about such groundbreaking ideas and research.

      I agree with you about lavender (and other essential oils) containing allergens - they are listed on my labels and website. Whilst this is important to consider I don’t think it is a reason to never use them, That’s like saying we should ban nuts in food because some of people are allergic to them. I do think the natural beauty world has to start thinking about sensitisation (people developing allergies) to natural products - in particular essential oils. I think this is on the rise because of wider use. I am currently addressing this issue as I expand my own range.

      I am sure we will have to agree to disagree on many of these points. I have learned a lot from this discussion and it will change the way I work and think to some extent. I hope you have found it positive too. I am in business and I do have an interest in selling products. I did, however, choose this business because I feel it can do some good while making me an income. There are others like me and we do care, and we are striving to make genuinely helpful products and spread helpful information because we feel commercial skincare has gone very awry. I will be writing about the potential of healing without moisturisers and about hypersensitivity to products in TSW on my own site, happily, at the risk of putting off potential customers.

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    7. Oh wow what a discussion! Sorry that I haven't replied to any of this. I agree with Dan to an extent about not using moisturisers as I found myself at a stage last year where it felt better not to use much if any. However right now, my skin is SO dry (and I know Dan you'll jump on me for this and try to convince me to keep going) that I am open to considering options if they are to aid my current problem. If you read my recent post you'll see that I'm going to be going back on to Ciclosporin in a few weeks, and right now I'm currently signed off sick from work because of the turn my skin has taken. It'd be fantastic if before that time my skin started to clear up a little itself as I know that steroids will be pushed heavily on me. I am at a slight crisis point now where doing nothing or doing something is not helping and my health is deteriorating rapidly. For this reason I would love to accept the offer of your product, Vicky, it really can't hurt just to try it out. Please could you provide me a link to your website and I will email you accordingly.

      Thanks guys,

      Jenny

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    8. Jenny, my days of badgering people into not using moisturizers are over. But, I will say this. You said it couldn't hurt. Just look at what moisturizing has it gotten you so far. I can only say no it can't hurt, but it surely can't help, and very possibly prolong your recovery. If you want your skin to heal, allow it to heal. I promise to say no more on the subject here. I truly wish you the best.

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  8. http://mototsugufukaya.blogspot.com/search/label/About%20cyclosporin%20A%20therapy

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