So as I was saying the other day I was doing quite well minus the very small mini-flare I had on my hands and ankles the other day. Last night I was up until past 3 am....had some insomnia I've not had in a long time. It was as if I downed 3 cups of coffee or something! My brain was super wired! I couldn't shut it off! While my mind was racing, I noted my chin and left ankle started itching like mad and I got hives on my left elbow. So weird! This morning I awoke to some increased irritation on my chin and an all broken open left ankle....I truly tried to not scratch while awake but apparently scratched in my sleep! UGH! I don't have any burning pain or oozing. But the areas are slightly itchy today and the hives are completely gone. Thankfully I did not scratch any of those open! Everything else is status quo. So below are the pictures I just took and below those are from 5 months ago just before I started the supplements for the MTHFR gene mutation. It helps to have some comparison shots to see progress!
Close up shows chin irritation and dry skin. I don't really notice the dry skin. From a distance it is barely noticeable.
Overall face looking decent
Noted slight itching on left side of face (typically my better side throughout all of TSW).
Left ankle scratched up.
Face about 3 weeks before starting supplements
Same day as pic above
Left ankle about same day I started supplements.
Left ankle earlier this week. May look worse than 5 months ago to some, but I see a huge decrease in overall redness and swelling. There are more sores, but they are really dried out.
Hi Tracy, with all due respect, I think you are crediting supplements for your skin improvement when mw is much more likely the cause. Your improvement is just about the same as everyone who does mw at your stage in tsw. Supplements have a much more subtle effect and likely make you feel better, more energy, etc., but I highly doubt they contributed much to your skin's improvement you have had since mw. I have been taking omega3, flax oil, vit D3, Vit. C, MSM, low potency vitamins, and probiotics for many months and I haven't noticed anything from taking these. The majority of my skin's improvement is from not moisturizing. I'm sure my supplements probably help my body and skin indirectly in a very subtle way, but again, it's the mw that caused the noticeable difference. I know they aren't the same supplements as you take but regardless of what kinds of supplements, I highly doubt any supplements can mimic the same positive effects that mw does. Again, you're improvement is nearly identical to everyone who has done mw. I hope you will give mw more credit. I know you do give it some credit but you seem to place as much if not more of the credit on supplements and I really believe it's 99% mw that is responsible here.
ReplyDeleteI just wanted to add that I have followed and believe in your gene mutation work and believe there is something to it. I just think taking supplements for it will help much more so once you are recovered from tsw in keeping your skin from breaking out due to external stimuli. I also believe they could have helped pre-tsa. But I really don't think the supplements have much of an effect during tsw for various reasons. Our bodies are recovering from serious ts damage and the reaction in our skin is far too overwhelming in tsw for any supplements to have much of an effect on those symptoms. MW does accomplish the improvements you've had as has been noticed by many people now that are not taking the same supplements you are taking. I hope this makes sense. I'm not trying to discredit your gene mutation work at all, just am hoping you will recognize what has really helped your skin improve since you did mw and not place the credit for it onto something other than what really did it.
ReplyDeleteI here what you're saying Dan, but honestly I know some people doing MW who still flare pretty bad....my flares have progressively gotten less in intensity and duration. I attribute this to the supplements because they are directly responsible for cell REPAIR. I liken it to someone who has a poor functioning thyroid. They can't function too well without thyroid meds. If I had NOT had this gene mutation, I don't believe I would have developed TSA, just like someone with a regular thyroid would not develop specific medical problems related to poor working thyroid. I NEED the supplements for cellular healing. My body only repairs my cells at a 20% rate of a normal person. MW is necessary because with the gene mutation, the cells are only working harder to heal and clean the cells of any added chemicals. Would I heal with just MW? Well sure, but in 3-4 years like other 30+ year users like myself. I think I will be healed MUCH faster because of the supplements AND MW. Just like someone taking thyroid medicine would feel significantly better than without the medicine. The supplements are needed for both short term and long term health for anyone with this gene mutation, especially with the severe kind like I have.
ReplyDeleteI understand what you are saying but I have little doubt that I wouldn't test positive for the gene mutation myself, and I had a very nice steady improvement from month 3 to month 7 when all hell broke loose and I had a huge ungodly flare that kept flaring for a full 5 weeks. I was almost 100% healed before that flare, and all previous flares lasted no more than 4-5 days. I know all the supplements I was taking prior to that didn't help much as tsw symptoms are not subtle but rather too intense for supplements to make much of a difference in the short run. MSM does cell repair too and I take that. In other words, my flares progressively got less in intensity and duration until that big one hit me. I never attributed the progressively less intense flares to my supplements, and don't believe they had that much at all to do with anything other than on a more subtle level. I only take supplements on faith they are helping me in the long run. There is no discernible difference that I can tell from taking supplements. They are mild acting things. I completely agree the supplements you are taking may be needed for long term health benefits and don't disagree with your theory on this at all. I just think you aren't giving the lack of moisturizing the credit it deserves as I believe it is much more responsible for your skin improvement than the supplements you are taking. I'm sure supplements help as does diet, but I have found not moisturizing seems to have a much bigger effect than all those things combined. I only want mw to get the credit it truly deserves and I believe it's not a coincidence that your skin improved so much by doing both at the same time. I would attribute the mw at least to 90% of the skin improvement.JMO and respectfully so. I've always admired your ability to think outside the box so please don't get me wrong. You say "Would I heal with just MW?". That's my point, your skin has improved mostly from mw and not from the supplements. No, you won't heal from mw, but your skin will strengthen and you will see the improvements you've seen just by allowing your skin to function normally without smothering it with moisturizers. Now as far as healing goes, to me that is different from the effects not moisturizing has on the skin. Yes, you likely will heal sooner by supporting your body. But again, the improvements you're seeing in your skin should be mostly attributed to mw. That would be like me attributing my improved skin to my supplements, and I know they aren't contributing to my skin's improvement near as much as not moisturizing is. Not even close. I take supplements to compliment my body's ability to heal in the long run but they have little to do with my skin's condition during tsw. I would assume most people have genetic mutations which is why I haven't bothered to test myself. It doesn't matter to me as I don't want to spend the rest of my life testing every single gene I have and adjusting my diet and lifestyle to best suit my genetic makeup. We're all going to die anyway so I'm not going to spend what's left of my life worrying about it as I know the mind has the power to manifest physical changes just by our thoughts. So, no matter what my weak genes may be, if I keep the proper mindset my body will take care of itself. But that's a whole different subject.
DeleteHi Dan,
DeleteI appreciate you being respectful! I completely understand your position and passion regarding MW. I guess I give it the credit I feel it's due based on other people's experiences as well. I know some have tried it and not seen too much of a difference and fair enough to say they may not have given it a fair shot. However behind the scenes are many private emails I have with people wanting more information on my supplements...these are kept private I think because of ITSAN's stance on not promoting or encouraging any specific treatment for TSW so people privately email me and it remains private. In these emails are people who have tried the supplements and have seen improvement with them but yet still using moisturizers. I encourage MW but some people have been too afraid to do it. But they end up going through MW or nearly moisturizer free when their skin improves on the supplements. I can honestly say that many see improvement around 4-5 weeks on the supplements. I saw improvement within 2 weeks because I did both the supplements and MW. But there are those out there using the supplements and healing better than before yet not going through MW yet. They have seen significant enough improvement to remain on the supplements and getting on with life better than before. So while I agree that MW places an important role here and I encourage others to go through it, I still feel the gene mutation plays a much bigger role than most think given it significantly impairs the body's ability to repair itself.
And I personally have no desire to test every single one of my genes either, but I can't discount genetics play a huge role in health...and personally I am more than happy to have this information so my long term health will maybe not be as bad as it could have been. Personally I am of the mindset that we all die anyway....yet I prefer to live as full of a life as possible. :)
HI Tracy,
DeleteFair enough. That's what I really like about you. You back up what you say with concise arguments that make sense. That is what I need, and I thank you. Since you are seeing decent anecdotal evidence that the supplements are working that well I concede you must be on to something. I wasn't aware of what you were seeing in others using the supplements both on moisturizers and off. Obviously from what you said you are right in that the gene mutation must play a bigger role than most think. Thank you for clarifying it better for me. Now I'll have to reconsider getting tested for the MTHFR gene mutation again ugh! I think you've convinced me. It certainly couldn't hurt. Thanks again!
Hi Dan,
DeleteThanks for that! I am one to not get overly focused on one thing....however with TSW, my whole life was turned upside down. So my primary focus was finding a way to shorten TSW not just for me but for the thousands of people suffering with debilitating "eczema" which is really TSA. I could not accept some people saying nothing but time will heal us. To me that was just like saying the grass is purple...it's just not true. So my mission was filled with a large amount of determination. I could not have healed as quickly as I did with just the supplements but I don't think I would have healed this quickly with just MW. I would have felt better sure, but my healing came from both. I would have loved to post about other people's progress as they relate it to me, but I think it will all come out in time. 5 of us are confirmed positive for the test and 2 more are waiting for their results. It's not a huge sample but if studies show that 30% of the population has this gene mutation, then out of the 5 who have been tested, statistically only 2 should have tested positive.
I can honestly say I was not 100% positive this gene mutation was the "answer" but when I first learned about it I would say I was 25% sure. Now I'm about 90-95% sure given all that I've seen with others. There is still that small part of me that is waiting for the next big flare. I've not had a full body flare in 5 months. I have read hundreds of posts from others and if I'm going to flare again, I should be having one really soon. I scientifically don't believe I will flare again. But given everyone else's experiences I would be naive to believe this is the answer with no doubt. More studies and testing need to be done. I just pray for everyone's sake that it can be sooner rather than later.
And to be fair, I've not given MW as much attention as I believe it needs when reviewing my blog. I will amend that soon! :) Thanks for having such thought provoking "conversations"! You should know that it was your blog that convinced me to do MW. I was inspired by your determination on the issue! So by putting both our determined ideas together, we may just have the answer to speeding up the healing process for TSW. Maybe we should put together a separate blog for that??
Hey Tracy, to be fair, just a couple weeks ago you said "My success I can now say with 100% confidence is treatment of my MTHFR gene mutation. Secondary to that moisturizer withdrawal played a huge part in healing." So to be fair, you have given MW plenty of credit in the recent past.
DeleteI've been searching your blog for information on how to get the test done and what supplements you are taking. I found the supplements but can't find the info on where and how to get the test done. I know I read it before. Would you mind directing me to the proper post on this? Also, I may start taking the supplements now but want to take more of a children dosage "size" to begin with. Would you mind telling me what you think I should take with the following in mind? I had cirrhosis but think it regressed to fibrosis 9-10 years ago so please keep the liver in mind. I don't want to overload it. I know you have had liver problems in the past too. One of many things we have in common. If I remember correctly from past research on compromised livers, or people with "liver disease" (God I hate that term), it needs plenty of Vitamin B12. Is that correct? Anyway, since I did research on msm a couple of months ago thanks to JSAN, I started taking it, so I'm already on my way. I take low potency Vitamins specially formulated for the liver that have no iron in them.
As for your comment on another blog, I think what we need is another forum like Itsan, but more information sharing based and less support based. It would be nice for people to have a choice. I can easily imagine a situation where both forums could be popular and beneficial. And two forums would give double the exposure to tsa/tsw.
Hi Dan,
DeleteSorry it took a few days to get back to you...have been very busy as of late. :) As for the test, just ask your doctor for a lab order to be tested for "MTHFR". Some people take the 23&me genetic testing but you have to use another program to decipher the information regarding the MTHFR gene (I plan to totally revamp my extra page regarding my supplements and add this info).
As for the supplements themselves, if you want to start with smaller doses, Seeking Health makes a great combo pill with active B12, folic acid, and B6 all in one. I believe it is called Homocyste X. I buy mine off Amazon. I also supplement with extra active B 12 and active folic acid. But the one pill should suffice for you for starting with a low dose. Also you may want to consider milk thistle. I would not recommend the ones that are 1000 mg as they make my stomach hurt a lot. I take ones around 300 mg and take 2 per day. I take them for about 1-2 months, then take a break for 1-2 months, and go back on again. I do this as the milk thistle can interfere with digestion if taken long term. So I break mine up into cycles and so far that has kept my liver enzymes normal. I still have to go for blood work soon just to see how I'm doing but I'm pretty sure my enzymes are back to normal even now. Let me know if you have any questions.
Thanks Tracy!
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