So here is what a year off of TS looks for me (next week I celebrate my year anniversary!):
Dry spots on chin, side of nose, and forehead...no itching or oozing.
Neck and chest looking and feeling spectacular (compared to how my neck has been all year). Those last few spots almost healed. No longer even irritating.
Leper looking left hand.
Right hand and wrist below same as left hand.
Right inner forearm...few dry itchy spots but no oozing.
Left inner forearm more dry and cracked than right arm but feels the same...just dry and slightly itchy but no oozing.
Left inner ankle and lower leg.
Right inner ankle same as left...few oozing spots but overall just itchy.
Left leg looking and feeling great!
Right leg the same - feels and looks great!
Tummy....other than the fat, not bad...same sores around belly button I've had for months like my ankles - just taking forever to heal.
Left flank doing better but same sores there for months now. Rest of back is perfectly clear like my legs, chest, and upper arms.
That's it....again after waking up feeling better today, starting to think this was a bump in the road...like a one week flare in my isolated areas, and not a huge all over spreading flare that will last for months. Going to give it a few more days, but today I felt myself turn a corner in the positive direction.
Hello!
ReplyDeleteI saw a comment you left on the itsan forum that you don't use any oils or anything on your body? For me that sounds amazing!! I'm only one and a half month in and I'm crazy itchy, do you think it's too soon to try and stop with oils for me as well? Like when I've had a shower I feel superdry and it would be weird not putting anything on..
xx Jo
Hi Jo,
DeleteNot sure that anytime is a bad time to stop using things on the skin....all I know is I wish I had done it from the beginning! I know I would have saved myself all kinds of pain. I was nearly pain free about 2 weeks after stopping the moisturizers. The first week was hell as the skin was tight and very painful because of the dryness. But I used ice packs on the more painful areas and had help from my mom. It was a very tough week, but so very worth it! The moisturizers just made me more inflamed and itchy and that just increased the pain. You have nothing to lose by trying it....it doesn't cost anything....but you should plan for a bad week mentally and physically. I am off of work for a bit so feel free to drop me a note anytime. Here to help!!!
Alright.. I might wait a few weeks cause I'm going to school still. But I'm off for 5 weeks from April so maybe my skin will be a bit better then...
DeleteBut how does the skin feel like after a shower? (I don't have a bathtub..) and do you dry up with a towel or wait till you get dry? I'm having a really bad time now with my skin and feel very sad all the time.
Hope you are ok? Home from work?
x
Hi Jo,
DeleteIt sounds like it would be best to wait until you're off from school. I would suggest when you get out of the shower to either air dry or gently pat with a towel. It doesn't matter I don't think. Your skin will start to feel super tight and it will be painful to move. But when that phase ends (typically around days 5-7), your skin will still be dry, but not so tight. The pain and itch may be significantly less, and your skin should start to feel stronger.
Being sad in all this is normal....but make sure you talk to someone if the sadness becomes serious depression. I have had many bouts of depression through TSW, but I always rebounded as my depression was situational.
So far I'm doing good. Just out of work because my hands get super bad from having to wash them all the time at work.
Ouch Tracy! Your hands look very similar to mine when I scratch them in my sleep. But mine look dry and scabbed over. Yours look like you have been using occlusive bandages on them? I pretty much gave you all the tips I know of. Mine are on the mend but it's been a slow process this time without the sun. I hope you heal soon!
ReplyDeleteNope....not putting anything on them at all except socks once in awhile but only when I need to do something and the air burns them. No water, no ointments, nothing at all! They are much more dried up than last week but I think I am still going through MW since I did the oil and glove thing 2 weeks ago. They look better today but haven't had time to take pictures again. Feel so much better so getting a ton of things done here at home!
ReplyDeleteI thought maybe occlusive because the hands look so white in spots. These red spots are the very ones that I heal with water diluted tea tree oil in two days flat. You might try it again now that you aren't moisturizing your hands now. I remember you saying when you tried it before you thought it may have not worked at that time due to that reason. Just trying to help. Your hands look so similar to mine at times. If you dilute the pure tea tree oil enough you can slowly adjust to a lessor dilution once you get a feel for it. If it stings too much, you are not diluting it enough, and vice versa. You want a light stinging sensation that goes away in several minutes. Anything stronger is too strong imo. Sometimes when my hands are like yours I will just put a few drops in a large bowl of good water and soak my hands for a couple of minutes in it. But that gets tiring as I want to reapply a few times a day. So, my basic way of using it is by dipping a Q-tip in the oil and pouring water over the oil drenched Q-tip for about 15 seconds and then just lightly apply it on all red spots that are sore. It really does work like a charm for me. As does witch hazel and super thin cotton gloves sticking to those spots and drying out leaving tons of tiny fibers and creating an instant scab over all those spots.
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DeleteI still have the pure tea tree oil so I will give it a go tonight....wanted to try the apple cider vinegar the other day but decided to just leave my hands alone until I felt they were out of the MW period. I have heard great things about the ACV just like the TTO, so I will try one one one hand and the other on the other hand for the next 3 days and see what happens. Thanks for being there Dan!!! Appreciate everything!
ReplyDeleteYou bet Tracy, I don't know if you read my comments where I talked about how in my current flare, by my third day w/o doing a dss bath I end up succumbing to the itch. Well, last night was my third night and sure enough I ended up tearing one of my hands. Maybe I should have zonked myself out on atarax again. I don't know. It's been this way for 5 weeks now and seems much harder to get the skin to stay put while flaring. I think I'm about done flaring but seem to be a little still. I chose not to do a bath today only because I caught myself in time and only ruined one hand instead of both. I thought about it but decided to use tto and see if I can get these natural oils to come back. I can always take a bath any time I feel like I need to. It's too bad you can't do dss. It just makes it harder to heal without both those or the sun. I know how hard life is with hands like this. If you aren't flaring it should level out on it's own soon.
DeleteThat will be a good experiment. I'm a huge fan of acv but didn't give it much of a try in this way. I only have done baths with it once in a blue moon. I always drink a tablespoon in tea when I don't feel well (Bragg's only). It will be interesting to see the results.
Tracy, I was in a lot of pain yesterday and last night from several sore spots on my fingers where I had scratched the previous night and I really debated with myself whether to do another bath or try and hold out by treating the areas with witch hazel and/or tto. I ended up using mostly tto and applied it probably 7-8 times throughout the day and evening right up until I went to bed at 2am. I heavily self medicated myself so I could sleep. I got only 3 hours of sleep the night before. I started taking MSM a couple weeks ago and think it's kicking in and giving me lots of energy and contributing to my sleep difficulty. I awoke at 9am with no scratching or itching and this morning my hands feel great! It may not last all day but right now those sore spots are healed over again and not hurting. There were two small cracks in my right palm that were opened up which really had me concerned the most but even those are completely closed and healed. I hope you have the same success. I know in my earlier days there were times when tto just didn't work as well at times for me. I think those times were due to my skin flaring so badly at the time that it just took more time. Anyway, I hope my experience is helpful and hope you find some relief and are able to get your hands healed. I can take this stuff most anywhere on my body but the hands are a whole different story.
DeleteHi Tracy, just wondering what the results of your 3 day test are?
DeleteYou know, pictures always makes scabs look so much worse than it really is. I stopped oozing and bleed when I scratch which looks much more red and dramatic in photos. I hope in the next year you will see healing!! You've come so far!!
ReplyDeleteThank you Esther! I know what you mean by pictures....unfortunately mine look as bad as the pictures make them look....I use the pictures to compare my hands to see if there is ANY healing. I just hope my hands get under control soon! Hope you are doing well!
Deletewow tracy
ReplyDeleteyour lookin gooodddd!!
Dear Tracy,
ReplyDeleteI’m so glad you’re feeling better now! Oh, those bumps in the road...
As promised, here are the results of my recent MTHFR mutation lab work. My naturopath had ordered all the tests you recommended, asking me to abstain from ingesting for one week prior to the blood draw all of my supplements containing B6, B12, folate/folic acid, and betaine, which I did. One of the tests (CMP) required an 8-hour fast prior to the blood draw, so I did that, as well.
I haven’t yet met with my doctor to discuss the results of the testing, but she has the lab report in hand and has asked me to start a particular protocol now. Unfortunately I won’t be able to meet with her before March, but at least we can exchange e-mails as necessary in the meantime.
Since I haven’t been able to discuss the lab report with her yet, and since I don’t have a medical background myself, it’s difficult for me to understand all the details, but here is what I do “get”:
I have one copy of the C677T mutation and one copy of the A1298C mutation. From the online reading I’ve done, I think that particular MTHFR mutation is called Compound Heterozygous, meaning that I inherited one copy of the 677 mutation from one parent and one copy of the 1298 mutation from my other parent. My homocysteine reading was right in the middle of the normal range, but my B12 level was super high—way beyond the upper limit of the normal range.
Because of adrenal challenges I’ve experienced for the past 10+ years, my naturopath has had me on a sublingual methyl B12 supplement for a long time, increasing the dosage to 5000 mcg a couple of years ago. I’m to stay on that, and now she wants me to ditch all my supplements containing (synthetic) folate/folic acid and replace them with Seeking Health’s Optimal Multivitamin and 1/2 tablet of Seeking Health’s Active B12 Lozenge With L-5-MTHF.
...So, it appears that I, too, fall into the category of TSA victims who have some form of the MTHFR genetic mutation.
FYI, I’m 66 years old, have contended with atopic eczema/contact dermatitis most of my life since infancy, was exposed to TS for probably 3-4 decades of cumulative use (applied mostly to my hands/wrists), and I used five different TS preparations ranging in potency from .5% OTC hydrocortisone cream to prescribed Topicort ointment. True to atopic form, I’ve also been plagued with Allergic Rhinitis and contact sensitivity to wool, nickel, and lots of other substances all my life. I’m just two days behind you in my journey through TSW: I stopped TS on 16 Feb 2013.
I hope this information will prove of value to you in your quest to determine a possible link between the MTHFR mutation and risk for TSA and a long, arduous TSW.
I follow your blog closely, and I so appreciate all that I’ve learned from you there and in your posts on ITSAN’s forum. In fact, I have you to thank for making me aware of the MTHFR gene mutation. Towards the beginning of my TSW journey, I contacted my naturopath via e-mail after realizing (thanks to ITSAN) what was causing my skin’s uncharacteristically horrible flare-up, and at that time I asked her for suggestions for natural substances that might help reduce my discomfort. However, I haven’t kept her up to speed over the ensuing months and have never met with her about this condition. I really like her, but I must pay for her services out-of-pocket, so financially I need to keep my appointments with her to a minimum. If I were seeing her more frequently, she might have raised the possibility of the MTHFR mutation herself by now, but I just can’t afford to visit with her very often. At least she’s trained to treat the mutation, for which I’m very thankful.
Thank you ever so much for all that you do for your fellow TSW sufferers! I’m keeping you in my prayers as you contend with your own challenges with TSW.
All the best~
Nancy
Hi Nancy! Oh my....I had tears running down my face reading your comment! I am so thankful to you for getting tested! It helps more than you know! You taking the sublingual B12 has been helpful, but as you know from reading about the gene mutation, it is also critical to be taking the L-5-MTHF - your naturopath suggested the best brand there is for our condition. Hopefully by adding the L-5-MTHF you will start to see improvements within a few weeks. I was also advised to take MSM powder and NAC as they will help with the cycles that are affected by the gene mutation and allow for better cell repair. I plan to just be taking the active B12 and L-5-MTHF in a few months and be able to stop all the other supplements. All I know is I have never felt this good in all my life....my fatigue has been gradually going away and if it were not for my hands, I would probably not even think about my skin on an hourly basis! I have a feeling though that my hands are going to be the last part of my body to heal...but that's OK as I now know healing is just around the corner. Thanks again Nancy and I will pray for you to have faster healing! I don't know where you live, but we should get together to celebrate our 1 year anniversary!!! :)
DeleteThanks so much for your reply, Tracy!
DeleteI'm expecting my naturopath to recommend additional supplements once we're able to meet to discuss the lab report, but at least she's given me a starting plan to follow prior to our get-together. I've historically been so chemically sensitive that I've found it best for me to begin any new supplement regimen slowly anyway.
I'm so encouraged by your MTHFR treatment results! I confess that, even with the help of the methyl B12 I've been taking for years now, I can't remember what it feels like to have energy. Hopefully the L-5-MTHF will help chase away my fatigue.
I feel for your struggle with your hands because my hands/wrists/forearms are where I'm flaring worst right now. Keeping my hands protected from water for long stretches during the day (which I know isn't possible for you when you're at work), coupled with frequent sprays of a 50:50 solution of Bragg's ACV and filtered water, is helping those areas considerably right now. Recently I even started wearing disposable gloves over cotton gloves when I prepare and eat food. I've always worn rubber gloves to clean up the kitchen, but a couple of weeks ago I decided to protect my hands from exposure to water during the preparation and eating phases of my meals, too, and that new strategy is making a big positive difference. I've been MW on most of my body for several months now and had tried withdrawing moisturizers from my hands a couple of times but gave up because of the extreme discomfort. But I tried it again a couple of weeks ago in conjunction with protecting my hands from water whenever feasible plus spraying them frequently with the ACV solution (which I'd read about on the ITSAN forum), and I'm thrilled to discover that I'm tolerating MW on my hands well this time.
...Little by little we make our way through this TSW journey, right? Despite all the discomfort I've suffered and all the tears I've shed, I'm thankful nonetheless for all that this experience has been teaching me about so many things, tangible and intangible.
As for my location, I live in the greater Seattle area, a "fer piece" from upstate NY. But I'll certainly be thinking of you on the 14th and celebrating with you in spirit! This past year has crept by at a snail's pace, it seems, and yet when I look back it seems like just yesterday I was looking forward to being able to claim victory for having survived my first week of TSW!
Best wishes~
Nancy
Thank you Lisa!!! I've been thinking about you! Hoping you are doing OK. I've been sporadic on the forums lately so I'm not up to date on how everyone is doing. Email me and let me know how you are!
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