Monday, December 30, 2013

Before, during, and after pics of MW on neck

As I have written before, I have stayed away from all moisturizers the last 3 months except for my neck and hands. I have been using a scant amount of neosporin with pain relief on those areas due to having to work and not being able to deal with the pain. That scant amount kept growing until I was rubbing the stuff on multiple times a day. And the only areas that were bad were my neck and hands.  I can understand my hands given how much I have to wash them at work, but my neck??  So I decided to go through complete MW on my hands and neck starting last week.  I had to live with ice on my neck most of the week.  When I went to work, I was hurting!  But it paid off!  I am happy to say my neck is feeling amazing!!!  I have not had luck with my hands as of yet...I started tanning this week as well.  When I went tanning, I would have to cover my neck for about 30 seconds every 2 minutes because it just hurt.  But after the third session, it actually felt great!  Today was session 4 in a row.  I have to say between MW and tanning, I may not need to go visit the beach!  I seem to have calmed the flares. I am still on all my supplements and will continue them.  Since my body has a lot of healing to do from the genetic mutation, it will take time to see 100% clearing on my skin.  But given how I have been improving for the last 3 months, I am going to make an educated guess here and say I think I will be 100% clear in 3-6 months.  Only time will tell of course, but I'm willing to take bets!  :) Of course I'm kidding as I'm not a gambling person, but regardless, if I am clear within 6 months, I win anyway because I will have been freed of this beast!

So here is how it went down....started MW on  the 22nd or 23rd I believe.  I have a picture taken a week or two before then of my neck in a pink/red flare. Then the next picture is taken on Christmas about 2-3 days into MW when my neck felt at its worst....cracking and oozing and oy the pain!  I could barely make it 30 seconds without my ice pack on to take the picture!  Christmas was spent on the couch while the kids played with their gifts.  Then the third picture is of today....1 week into MW and 4 days of tanning.







I am going to a tanning booth that has both UVA and UVB rays to try to mimic the sun as much as possible. I went for 5 minutes the first day in a 15 minute maximum bed.  I worked up to 12 minutes in a 12 minute bed today.  I don't feel burned and if anything, my skin feels softer and more hydrated than before.  I plan to keep going about 4-5 times a week for the next few weeks.  If I can't clear my hands in that time, I will then consider taking a 4-5 day vacation to Florida. Currently my hands are still a mess but feeling better.  I have to work the next 2 days so that will give me a good idea on if the tanning is helping.  

Again I urge anyone with TSW to do 2 things:  try MW for at least 2 weeks minimum.  You have nothing to lose - yes it hurts for the first few days but it is well worth it if it ends up working for you! And 2.  Get tested for the MTHFR gene mutation - it would be worth knowing if you need the special activated B vitamins to offset others conditions as well such as heart disease, stroke, etc.  Or if you don't want to get tested, at least try the activated forms of folic acid (5-mthf) and B12 (methylcobalamin) .  They are water soluable and an overdose is extremely difficult to obtain.  I purchased a sublingual form of the 2 combined to give my kids given they have at least 1 part of their MTHFR gene mutated from me.  

Hope everyone had a wonderful Christmas (for those that celebrate) and here's hoping for a better new year for all of us going through TSW!!!  

Thursday, December 26, 2013

Why I Support NO Moisturizers

Among the TSW crowd, there are quite a few strong opinions on whether moisturizers help or hinder the course of TSW.  I stopped all moisturizers the same week I started my new regimen of supplements for the gene mutation I now know I have.  It was hard for me to determine whether or not the stopping of moisturizers was a small, medium, or large part of my recent healing.  I still firmly believe the supplements directed towards correcting my gene mutation was largely responsible for the big clearing of skin I have experienced in the last few months.  BUT MW (withdrawing from moisturizers) has played a big part in dealing with recent flares.

You see I knew I would still flare given that correcting the rNA of my skin cells would take some time.  In fact I realize now that since the supplements are aimed at repairing ALL cells, that my skin cells would be some of the last to heal....meaning my body is going to repair itself  from the inside out.  But I can say my recent flares have been very easy to handle compared to my first 7-8 months of TSW.  And that is where MW comes into play and how I have determined it is VERY beneficial.

You see while I stopped all moisturizers on my body, I started using my Neosporin with pain relief on my neck and hands when I returned to work.  While my neck cleared dramatically, it was still extremely sensitive, and even the smallest spots still bothered me.  Working was rough on my hands. So I used my handy little tubes of numbing antibacterial cream.  Only a dab here and a dab there.  Well, my neck started flaring on/off....sometimes red, sometimes pink. But over the last few weeks it has worsened down to my chest and shoulders....and I just kept putting on the Neosporin on those places. And then I tried different things on my hands....colloidal silver, tea tree oil, and a few other things.  And guess where I continue to flare?  Only my hands and neck/chest.  It has been driving me crazy!  I was getting the macerated skin again in those areas and I started getting angry.  I decided  4 days ago to stop everything completely.  Let's see if the Neosporin was becoming an addictive moisturizer.

Since I already went through MW on the majority of my body before I knew what to expect.  Except I wasn't expecting  the pain to triple on my neck!  But it did!  Only on days 2 and 3 were things really bad!  Last night I slept without waking!!  And I could actually move my neck without feeling like it was going to split wide open. So the final verdict is MW is the way to go for me and probably for most of those in TSW.  I think everyone has to decide for themselves but people should at least give it a go for a few weeks to see if it helps them.  I am still having pain in my hands and neck today but I can tolerate it so much better than the increasingly macerated skin I was getting from putting a cream on those areas.  I also want to stress that picking at the scabs or dead skin will cause the ooze to come out.  LEAVE THE SKIN ALONE!  I find it barely itches compared to when I used creams on my skin.  I can generally stop myself from itching. It's the absent minded picking that I need to stop!  If I pick even a little skin off, that area will burn and maybe ooze.  I think the scabs we form are like a blister....we "pop" the scab and fluid comes out similar to a blister.  So in order to do MW the correct way, we have to leave the skin alone.  Not easy, but I find it much easier to do on my neck, because one small picked area will cause serious burning for a few hours.  This morning I vowed to leave it alone and so far I have! And already it is feeling a lot better!

A few other big tips: Bathe as little as possible....quick in and out.  Baths should  not be longer than 20 minutes tops.  I do a Dea Sea salt bath 2-3 times a week for 15 minutes - yes I feel dry afterwards but nothing compared to when I used moisturizers.  I  also will wash only the necessary areas with Dove soap.  I don't think we need soap all over.  If I have to bathe a few days in a row, I spot clean with a washcloth.  That's it.

As for my flaring....I am red on my neck and hands and skin is split all over those areas. I am pink and broken out on my left arm and chin.  My feet, ankles, and legs are doing so much better....no flaring!  Just some left over scabs that are healing.  My low back flared a bit last week but is almost all healed now.  I plan to return to the tanning this week.  It's hard because it is painful to dress and undress around my neck. Sounds silly....one small area will cause me not  to do so much. But I really think the tanning at this stage will help.  I'm really hoping it will help my hands!  They will be the last place to heal given my job as a nurse.

So my stance on MW is based on my own personal experience and those of others.  It stands to reason that one should at least give it a try to see if it works.  It is not easy and can be very painful for the first week. But if it works better for you then it will be worth it.

Wednesday, December 25, 2013

Keeping Busy....

A very Merry Christmas to all who celebrate Jesus!  We have had a nice Christmas, although one with sick kiddos!  We were going to go visit family 4 hours away but the kids had fevers so we are planning a quiet day here at home.  It is also why I have been pretty absent from blogging and emailing.  It's hard to type with kids hanging on each arm!  :)

Skin wise....OK....will update in a few days.  Nothing too exciting either way.  Pretty stagnant actually.  But that's not always bad!

I had a bit of good news though the other day....received an email from CNN saying my bearing arms story made it on their top 13 personal stories list for 2013.  Happy to have made a small impact in this world, and going through TSW nonetheless! (Writing was therapeutic for me while sitting at home in my misery!).

Praying everyone heals sooner rather than later!  BTW...upcoming post on moisturizer withdrawal!  The ever so controversial topic in the TSW world!  I have made a final judgement on it as of this morning. I will explain it more tomorrow when hopefully the kids are not so sick!  :)

Saturday, December 21, 2013

A BAD evening yesterday but so much better today!

Yesterday I started the new supplements my ND added to my regimen.  Along with increasing the 5-MTHF.  I know some people do not believe in cleansing reactions or Herkimer responses, but last night around 6-7 pm I started a severe reaction to something.  I want to say it was partly a flare, but a flare has never come on this strong before and gone by the following morning.  I was burning all over, shaking, shivering, sweating, feeling like I wanted to crawl out of my skin, and high anxiety.  The kind of anxiety people get medicated for!  I had a reaction like this in the past when I started my holistic journey and had started some remedies for overall health - my practitioner at the time called them healing/cleansing/Herkimer responses.  Ummmm....they are not cool by any means.  It feels horrid!  Luckily I had left work earlier in the day because of my hands!  I could not imagine dealing with that at work!  I would have freaked everyone out if I couldn't control my anxiety.  I was able to at home because hubby and I knew what was happening.  He was able to rub my feet and keep me calm!  I was able to sleep finally with Benadryl and woke up feeling good.  Then I took a Dead Sea Salt bath and felt even better!  Then I took Dan's awesome advice and applied diluted tea tree oil to my hands.  I had tried the colloidal silver and even a tea tree oil spray that included other things....what I found was even though they were based in water, my hands still acted as if they were getting moisturizer!  They had that soft, raw, peeling skin that was the bane of my existence the first 7-8 months of TSW.  I switched over this morning and already seeing a huge change in my hands!  So, THANK YOU DAN!!!!

Today was our first family day in months.  Hubby has been doing overtime since I went back to work 6 weeks ago.  We were supposed to go snow tubing, but 50 degrees and rain makes for a muddy mess, not snow fun!  Instead we surprised the kids with a trip to the arena to see Disney on Ice!  What an awesome show!  We have never taken the kids to such a show, so it was hit!  Then we did a little Christmas shopping for cousins and topped off the night with a trip to our favorite restaurant - the Macaroni Grill.  I love their wine, but am still keeping FAR away from any and all alcohol due to the inflammatory response.  I had some a few months ago and it was a mistake!  But we had a fantastic dinner and dessert!  I had a small spot on my neck causing me irritation.  That was it.  In fact the reason it was irritated was because I was sweating!  I have done very little sweating - it only started to increase this past month - mostly in my armpits and under my breasts.  Now I am sweating on my neck and when hubby kissed me at the restaurant he said my upper lip was sweaty - sure enough it was.  I was warm given the amount of people all around us.  But didn't even notice the sweat.  I think this is awesome progress! 

Well off to wrap some presents!  I will take some pics tomorrow - still recovering from my flare but at least the majority of the redness is gone and I am seeing some healing of the scabs.  Hope everyone is doing well! 

Friday, December 20, 2013

ND visit....very important post!!!

OK....came early from work....darn hands were a MESS and there was no way I could work as they just got worse by the hour keeping them bandaged.  I can't keep them open to air because of risk of infection but having an occlusive dressing on made them so much worse.  Not sure what that means for working next week and so forth but I will worry about it later.

I went to the ND today and was told I have the homozygous type C MTHFR gene mutation.  Basically it means my cells can only repair and cleanse at 10-20% of what normal cells do.  That's bad.   It can cause high homocysteine levels in the blood causing inflammation, heart disease and a ton of other disorders.  I wrote a post about this here.  Also there is a great blog post by a doctor Jill who explains it way better than I could....http://doccarnahan.blogspot.com/2013/05/mthfr-gene-mutation-whats-big-deal.html

Basically it partly confirms my theory that those of us with TSA/W are part of the 30-40% of the population that has some factor of this MTHFR gene mutation.  It would explain why many people do not become addicted to steroid creams at all after years of use (like a cousin of mine),  It could also explain the varying ranges of withdrawal symptoms.  If I'm right, then people who have severe problems like chronic fatigue, arthritis, and other auto-immune problems and take many years to heal from TSW probably have the worst case scenario for this gene mutation which is homozygous types A and C.  And those who seem to have a light case of TSW and heal quickly might just have the heterozygous form of either A or C, but not both. Having the heterozygous form of just one means your cells repair at a rate of 60% compared to normal people's cells.

So why does this only  partly confirm my theory?  Well we need more people with TSW to be tested.  If 100% of people with TSW test positive then we will know the course of treatment can significantly reduce symptoms and possibly length of suffering.  With the test results, my ND changed some things.  He added a few new things and increased my 5-mthf to 5 mg up from 1 mg.  He said while the MSM and glutathione are helpful and needed, the 5-mthf is what I really needed to increase.  So he said I can continue with the oral glutathione and stop the IV form as it was not necessary to take the higher IV dose.

If you are interested, just ask your doctor or ND to be tested for the MTHFR gene mutation.  It only took a few weeks for my results to come back.  I am going to look into trying to get funding together so we can get a bunch of us tested.  But if you do get tested, please let me know!  I think it would be a very important study to do.  And if we have a number of people who got tested and all tested positive, it would give us leverage to get a study going.

That's it for now.  I was doing really good this morning but now my hands are a wreck again and typing is making some ooze come out.  Hoping it was just the dressings....praying it is gone by tomorrow and I see some healing in them soon!

Thursday, December 19, 2013

Flare subsided today but damage already done...

I decided not to work today....hands were too damaged and there was no way I could work with my hands so open.  Thankfully hubby was able to cover my shift!  I feel better after sleeping until 11:30....I rarely sleep past 9 or 10 anymore so this was a bit bizarre for me. It felt more like a healing sleep if that makes sense to anyone.  I have pictures below of the damage done the last 3-4 days of scratching like a crazy person.  The scant amount of ooze I was getting was enough to cause intense itching.  I am not oozing today except for a small patch on my right leg...and it's really small so I think this may be over?  Not sure but time will tell.  I have not put anything but the colloidal silver and tea tree oil spray on my hands....doesn't seem to have helped at all.  So it was a flare thing and not an infection thing. But I will keep on those 2 products for the days I do work to prevent infection.  I fear infection working in a hospital...that's part of why I didn't work the first 8 months of TSW.

So without further ado...here are the pics....these are the only places I flared except for 2 small patches on my low back which is hard to photograph by myself.  And of course a few small patches on my chest which I refuse to photograph for obvious reasons.  I would guess I flared on 35% of my body.  Not bad I suppose.


Eyes swollen a bit this morning.  Right cheek nearly healed but chin and upper lip flared.  Neck is the same as it has been for months...dry and itchy.  


Left hand - barely pink and not swollen, but torn to pieces. 


Same with right hand.  No red skin  or swelling.  Some elephant skin going on though and scabs from all the scratching.


Left arm - dry and healing today...barely any itch.


Right inner leg...boy did I tear it up!  Didn't know how to stop scratching!  It was pretty bad for about 2 days...the red circle in the middle is where I am still slightly wet from ooze.


Left lower inner leg and ankle.  Pink and some slight swelling. 

Wednesday, December 18, 2013

Flaring but keeping the hope!

Well there is no longer any doubt I am flaring.  The spasms of pain here and there and the oozing on my hands were the lead up to the flare.  I whined a lot about it yesterday to my husband and a little bit more today.  But the bottom line is I am not in a full flare like I had in the past.  I am oozing here and there.  Maybe it will get worse.  Maybe not.  I changed back to my original MSM yesterday and I will give it a few days to kick in.  I refuse to "give in" emotionally to this beast.  I will not let it take over.

My legs are on fire as are my hands, chest, low back, and parts of my arms.  Weird thing I noticed is the flaring areas on my arms and legs are the inside parts of my limbs.  For the first 6-7 months of TSW I had a horrible area on the outside of my left arm.  Not this time....outside parts of my legs and arms are perfectly clear. My ankles and wrists are probably the worst areas right now.  The good news is the thickening skin I had throughout the entire 6-7 months on my hands and wrists did not return.  The skin is not swollen nor raised.  It's just flat but broken open in many areas.  Not sure how the heck I'm going to work the next 2 days.  I bought a tea tree oil spray yesterday and used it at work.  It cooled the skin but not sure if it helped or not.

The other good  news is while I may be oozing, it is not pouring out nor do I have to wipe it away.  It is a scant amount, but enough where lint collects.  I have other freshly scratched areas that are not oozing and no lint collects there....so I can truly tell how much I'm oozing even if there is only scant amounts coming out.  It's not even enough to form the yellow crust layer.  And the smell is barely detectable...I only catch a whiff here and there which is good and I hope it stays this way because the ooze smell always made me nauseated.

I wanted to throw the towel in between yesterday and today. I almost threw out all my supplements and wanted so bad to go out and buy a bunch of junk food!  But I didn't as I still believe what I am doing is truly benefiting me and making my TSW significantly more tolerable.  I think between going back to work and other life stressors, I am just in a state of physical and emotional weakness. I am trying to take a few steps back and re-evaluate everything, but I might just wait to do that after the holidays.

I have my ND appointment on Friday and plan to ask about adding in homeopathy.  I also have to get on the ball after Christmas to eat 100% natural....no more cheating.  But it takes a lot of work and I can't do it alone.  I wish I had the ability to take a few weeks off so I could just have a re-boot with my life.  But that doesn't seem to be a possibility anytime soon....plus I would probably just sleep more and not get myself  back on track with anything so might as well work.   And yes,  I am quite a bit down right now.  But I am doing my utmost to not let it get to me.  I did make a few cookies....and I mean just a few. I am trying and not succeeding at accomplishing anything.  But the fact that I am still trying is what I focus on.

So for those that are in the perils of TSW and feeling terribly down at this moment....I feel you! But do your hardest to try something....anything.  And then give yourself a pat on the back for just simply trying.

Besides the obvious negative of flaring....the other bad thing happening is a complete and utter zapping of energy.  I don't know how I worked this week or last.  The past few weeks I have noted a huge decline in my energy levels.  I would  get a few tired periods here and there....now I barely get a few periods of energy anymore.  I am attributing this to not only the flare, but to stopping the raw adrenal I was tapering off.  I stopped it completely quite a few weeks ago and I didn't notice a change immediately like I did when I initially stopped it.  But I think it will take some time for the adrenals to get back to normal.  I am doing my utmost to get to where I don;t take any supplements and get all my nutrients from natural foods.  It will obviously take some time, but that is my plan.  I am hoping my ND has some good ideas or homeopathy remedies to help facilitate this.  I don't know how much longer I can last with this state of exhaustion.

Wish I had pictures to share, but frankly just too tired to deal with it. I will however share a picture of my children having a blast playing in all the snow we have!!  They get out nearly everyday....although I think they are going to need new boots and winter gear because they are just wearing their stuff out!


Monday, December 16, 2013

Phone Call & Flare

Yesterday evening I had a bad flare on my hands and arms. It started out of the blue...my hands have been bad since going back to work, but this was redness and oozing.  And the pain returned for quite a few hours. I was depressed and upset but thankfully did not cry or lose it.   I had changed the brand of MSM I was using about 4-5 days ago.  I noticed my hands and neck were getting ever so slightly worse since then.  I do not have ooze pouring out of me.  In fact the only way I know I am oozing is because my open areas have lint stuck to them....classic sign of the sticky ooze returning.  Other than that I would not have noticed...my clothes are not damp or have any wet spots.  I even had lint on one spot on my neck from my turtleneck.  I at first thought it was a real flare coming on.  But I am going to switch back to my original MSM brand today after I go pick some up.  I did increase my dose last night of my current brand and again this morning.  I only had a few spots with lint in it and the rest of the open areas are just dry scabs this morning.  I thankfully woke with no pain today.  Maybe the current brand is not as strong  as the original?  Or maybe it is a flare coming on.  What I do know is quite a few people in private emails who are trying the MSM say it seems to be dose related in regards to how much they ooze.  Thankfully my face is still unaffected and my neck feels much better this morning.  If I get a chance I will take pictures later today.

The phone call....the ND office called me today.  The secretary said my blood tests came back and the ND needs to see me this week.  Typically here is how doctor offices work with regard to blood work.  If all is good, the nurse calls you and says all is good.  If something is critical, the nurse or doctor calls you and tells you to go to the ER.  If things are not normal, but not critical,  they schedule you to come in to see the doctor  to discuss the results and see what needs to be changed.  I have never seen an ND before this so I am unfamiliar with their practices.  I am going to assume though they work similar to the MD's in regards to lab work.  So I am assuming something was abnormal, but not critical.  Oh well....have to  wait until Friday for my appointment. They were going to squeeze me in tomorrow but I have to work. If I switch days with my hubby then I would have to work 3 days in a row and I know I would not be able to handle that.  Not knowing though drives me insane!  But I do need to learn patience!  :)

As for other things going on.  I decided to make Christmas cookies after all.  I will not be making 5 different kinds like I want to - I know I don't have the energy for that. So I will just be doing chocolate chip cookies, cut-outs, and snickerdoodles. Saturday is our first family day in a long time as hubby has been working overtime.  We are going snow tubing!  The kids are so excited as am I!!  When we get home we will make it a family event to frost all the cut-out cookies!  What fun!  I am pushing myself here because my family has suffered right along with me.  My kids were involved in gymnastics and other events that had to be stopped because not only could I not afford it with not working this year, but I had no energy at all and could not drive for months. I feel bad for them as they have barely complained at all and stepped up to the plate to help with everything!  They are 12, 10, and 8.  While they need to learn the value of helping others and being humbled, I still feel bad that their lives were so drastically altered because of my TSW.  It is now time to reclaim our lives and get back into doing fun things altogether as a family.  I would put them back in gymnastics but we are moving soon, so I may wait until after we move.

There are multiple holidays and celebrations this time of year.  I know those of us with TSW are really suffering.  For those too sick to celebrate, don't beat yourself up over it.  I know if I was still flaring like in month 5 or 6 there would be NO WAY I could do all this.  I would feel guilty and bad, but would also know deep down that when I do heal, I would then have the opportunity to make it up to my family.  Since feeling so much better the last 2 months, I have been striving to make it up to my hubby and kids.  It's a slow process given most of my energy is used up with returning to work full time.  So I do push myself at times - but I now have the reserves to push myself.  I didn't before.

Life throws us lemons sometimes.  With TSW those lemons are just too rotten to make lemonade with.  But eventually some lemons will come through just ripe enough to make a little lemonade.  And eventually all lemons thrown our way will be perfect for lemonade.  God only gives us what we can handle. I didn't think I would make it past week 4 or 5, let alone 10 months. But I did.  It was hard and dark 95% of the time.  But God's light shone through at the exact moments I needed it to.  Keep putting one foot in front of the other.  It does get better.  Maybe not today nor tomorrow,  but it will eventually.

Sunday, December 15, 2013

Colloidal Silver

I decided to give this a try after my hands started really hurting the last few days.  My hands are badly cracked....more from washing them so much at work I think than TSW....but the TSW makes it worse.  I tried a whole lot of things.  I found that my hands were getting red around the cracks....TSW or infection?  Hmmm.  I then would try bacitracin or neosporin on my hands in case they were infected.  But the cream or ointment would make my hands that soft moisturizing like skin that would actually be worse than the dry skin. I did moisturizer withdrawal for a reason....but I couldn't with my hands because I was risking infection.  I talked to a skin care nurse who offered me little assistance.  The options were limited and expensive.  So then I decided to try colloidal silver spray.  It is silver particles in water.  They sell a silver cream but that would negate the whole MW thing. So I bought the spray and started it last night.  I figured I would try spraying my hands 4 times per day.  I have done it 3 times between yesterday and today and already feel a difference.  Now they still look as bad, but the pain is almost completely gone!  I am hoping this helps combat the minor infections taking place.  I know there is some debate on whether people with TSW grow extra bacteria on their skin or not.  Some have been cultured and show no infection.  But as a nurse, I know broken skin is a great breeding ground for bacteria.  Our bodies do a marvelous job fighting germs.  So while cultures show no infection, it doesn't mean our bodies are not working extra hard to fight higher levels of bacteria.  I also know antibiotics do a horrible thing to our guts and are generally not good unless absolutely necessary. I also know putting ointment or cream on TSW skin can make it worse for some people. But colloidal silver spray can be put on the skin in a water base - fighting infection without adding a moisturizing agent. And helping our bodies fight infection during this trying time may be helpful.  At least for someone like me who is exposed to millions more germs than the average person because of my job.

I will trial this for a week and then report back sometime next week on how  it goes.  I have plenty of pictures of my hands so  there should be a good comparison especially if nothing else on my body changes during this week.

Friday, December 13, 2013

Happy 10 Months To Me!!

Tomorrow marks my 10 month anniversary of TSW.   I have to work tomorrow so I thought I would get this up this evening.  Today I went for my 3rd IV glutathione injection.  I was looking forward to it as I have been in a state of flaring the last few days.  At least I think it is flaring.  I cannot describe it as it is nothing like I have experienced all through TSW.  I guess it is my new way of flaring with the supplements? Not sure.  All I know is I have this feeling of intense burning itch a few times a day that lasts for 2-10 minutes.  Each bout lasts a different length and it is not associated with anything in particular (food, change of temperature, or anything).  These bouts are not getting longer in length or coming closer together.  In fact I haven't had one today, but I had 3 yesterday and 3 the day before.  I get this insane need to gouge my skin in the areas that are open/damaged. At the same time I have a burning sensation mixed with pins and needles.  If I do give in to the itching and scratch, that particular area will burn 10 times worse.  I learned not to scratch very quickly. I at least know not to scratch because these bouts are intense and much different than any itching I have ever experienced. At least they are short in duration and I can stay the course NOT to scratch!  But it is very uncomfortable especially when it happened at work.  Someone remarked that I looked like I was in a lot of pain. I had to explain I was just having an itch attack related to my eczema and that ended  that.

This is not necessary bad news - I knew I was not going to heal right away.  All I know is this is tolerable and manageable.  I just pray it doesn't get worse.  Since I had no bouts of that today, I am pretty optimistic it is something that might just come and go.

As for other news, my hands are the pits.  I had an ooze pimple for the first time in months on one of my fingers yesterday.  It was tiny and had only a tiny amount of ooze come out of it.  It is dried over and nearly healed today.  No other pimples anywhere.  I am just not sure what to do with my hands.  I don't want to use any creams or lotions.  But cracked hands are at high risk for infection in the world of hospitals and diseases!  So I have been experimenting with different things to keep them protected.  I have yet to find anything perfect, but I still have a few things to try yet....skin issues are common in hospitals and they have special skin care nurses to deal with them.  So I need to go see one to see if there is a protective barrier I can put on my hands to prevent infection and keep the cracking to a minimum.  I really don't want to take any more time off just because of my hands!  But at the same time I cannot afford to get a serious skin infection either.

Overall I still think things are improving.  I still have issues with my neck....it's barely pink but the dryness is annoying most of the time - once in awhile it becomes slightly painful.  Thankfully it does not last long enough to be bothered by it. I noticed though that if I have something wrapped around my neck,  I barely notice it. So I wear turtlenecks to work, ice packs when home, and turtlenecks when going to the store.  It's almost as if pressure itself helps.  If I wrap something like a t-shirt around my neck loosely, it still irritates me, but something snug is comforting.  My arms are clearing nicely as are my legs. I still have an issue with my right foot - on again/off again irritated itchy skin.  My abdomen and low back have the same on again/off again irritation -nothing worth noting really as I don't even notice those areas anymore.  My face I think is still really good.  I guess the bottom line is I am feeling petty darn good and dry, but still need to figure out how to help my hands while working.  I continue to be thankful that I feel as good as I do and can go back to work!!

Here are some pics from this morning before going for my injection:







Wednesday, December 11, 2013

Toxins or acid? (WARNING: Adult content)

That is the question of the day.  You see since I have been taking the glutathione for the last 2 months, I have had a bit of a problem with my husband and my periods. (Huh???).  This problem got MUCH worse since starting the IV glutathione injections.  You see glutathione is a necessary antioxidant needed for every cell of our body....it cleans the toxins from our cells.  When we take in too many toxins (from food, pollution, medications, and so forth) our body becomes depleted and the toxins build up in our bodies....mostly in our fat cells. We can help increase glutathione in our bodies  by eating high sulfur foods (or taking MSM0, exercising, and taking precursors such as NAC.  When we increase our glutathione, the  body then has the tools to clean itself of toxins.  In our case, topical steroids.  Plus all the other toxins our bodies could not rid itself of due to using TS on a daily basis - in my case for 30 years.  Ummmm, that's A LOT of toxins people!

So what does this have to do with my hubby and my periods?  You see my last period caused me a lot of burning "down there".  Basically my own blood burned my skin.  I thought I was going to die for those 4 days.  I thought maybe I got a yeast infection....but after it was gone, so was the burning.  Hmmmm.  Then there is the problem with hubby and our ummmm, relations.  You see, for the last few weeks, anytime we try to get "close" he ends up burning and on fire from my bodily fluid.  At first we thought there were other issues at hand but nope...basically I am causing his sensitive skin to burn.  What in the world????  Then it hit me as to what might really be going on (thanks to bouncing this off my sister and her coming up with the why).   Either I am highly acidic from the supplements (although I can't figure out how or why that would be), or I am releasing toxins in such large volumes, the toxins are coming out in any way possible.

I figure it has to be the toxins.  I am still not sweating a lot....only under my breasts on a regular basis, and on my neck and chest only during exercise.  The smell is always strong but not to the point of nausea.  Well yesterday I started to sweat finally in my armpits.  I jumped in the shower after my elliptical routine.  When I went to raise my arms to wash my hair, I thought I was going to vomit!!  The smell was THAT bad coming from my armpits.  It was not normal body odor.  As  a nurse, I have smelled some nasty BO before.  This surpassed them all!  I may be a bit dramatic here, but seriously, I have NEVER smelled anything that horrible coming from my body before!  It was by far gross and disgusting!  The first thought that came after the nausea, was "I've got to be toxic!".

I would love to know if anyone else has experienced this maybe with a cleanse or something similar.  It is not something that causes me grief, but it did initially put a strain on my marriage because neither of us knew what the heck was going on.  Now that we think we know, we are working around it. But it would help to know if these kinds of things have affected others with cleanses or detox supplements.

Sorry for the very sensitive topics discussed...but I have been honest about this journey and will continue to report things as they come along no matter how good, how bad, or how sensitive.  :)  

Tuesday, December 10, 2013

My opinion of MSM

MSM also known as Methylsulfonylmethane is a dietary supplement used for a variety of ails and reasons. Some studies claim it as an anti-inflammatory.  It is widely used with glucosamine and chondroitin to help those with arthritis.  It was recommended to me by my naturopathic doctor (ND) for the inflammation and oozing of my skin.

MSM is a sulfur compound not to be confused with the sulfa drug group.  They are unrelated and those with sulfa allergies (like myself) can safely take MSM.  It is naturally found in cruciferous vegetables, onions, and garlic.

There are numerous pages on the web about MSM and even books written about it.  Quackwatch.com claims it has no benefit based on their research.  I prefer to read my own articles and make my own judgement.

There are no known side effects that I can find.  If you read something that spouts something bad about the use of MSM, please comment below as I would love to know!  I want people (including myself) to be as well informed as possible!!  According to research, up to 2 grams per kilogram of MSM did not kill lab rats. 2 grams per kilo on an average adult (let's say 60 kg for kicks) would be 120 grams or 120,000 mg!  I am currently taking 12,000 mg per day.

As for dosing - some say 1000 mg or 1 gram per day is the typical dose. I have read studies where 20 grams or 20,000 mg per day were studied and showed no side effects.  It was recommended I start with 4 grams per day.  I noticed a slight decrease in redness and oozing at that dose.  I spent 2 months increasing my dose up to 12,000 mg per day divided into 2 doses of 6,000 mg each.

Here is what I know so far in relation to TSW:

*** MSM decreases ooze and redness at a higher dose.  Everyone who has tried it and increased the dose has noticed a difference.  A few have emailed me and told me they tried it and it never worked for them but they admitted they only tried the 1,000 mg per day dose.

*** Starting at 3,000-4,000 mg per day divided in 2 doses is probably a good starting point.  Increase by 1,000 mg per day every 2-3 days until oozing stops.

*** Everyone so far trialing MSM while  in TSW seems to go through a rough first 3-4 days...almost as if the TSW gets worse briefly.  I personally think this is due to a cleansing reaction.  Not sure - just an educated guess.

***  MSM doesn't seem to help with itching - at least no one has said it has helped.  For me I notice more of an itch.  This can also be a healing thing.  I worked in a burn unit once and those in the later stages of healing would complain of itching.  I think the same applies for using MSM.  I notice my skin feels stronger so scratching does not bother me anywhere near as much as it did before.

*** I was instructed to take the powder form.  I have tried the pills and the crystal form as well.  Don't notice a huge difference between any of them other than I started to ooze in small places when I was taking the crystal form, so I switched back to the powder form.   It has a bitter taste, so I mix it with orange juice or grapefruit juice.  Any other juice or drink is just not palatable.  I hate taking pills, so swallowing 12 pills per day was just too much for me.

*** My research has led me to believe that the opti-MSM is the best kind to get.  It is made by distillation and is considered the purest.  Apparently the crystal form can carry trace amounts of lead and other bad chemicals in them if made in other countries besides the US.  I have no opinion on this, other than I live in the US and do my best to "buy American" in general.  Nothing against other countries - just like to support the jobs and companies here.  About the lead and other chemicals....I am only reporting things I have read and have no substantial research to back up this information.  I would just advise anyone to do their own research.

***  I cannot state with a fact that MSM  alone has significantly helped improve my skin.  There are too many factors involved.  1st - I know that if I go below 8,000 mg per day, I start to ooze.  Others report only using MSM and seeing a big difference.  2nd - I am trialing a few other supplements (NAC,  5-MTHF, and glutathione).  I  believe the MSM is great for seeing near instant relief of some symptoms of TSW.  However I believe glutathione is responsible for the overall repair of my skin (as evidenced by my increasingly smooth skin after each IV glutathione injection).  3rd - TSW is a horrible beast that can change on a dime.  It could be all coincidental that my skin improved drastically at month 7 when I first started the 4 supplements.  We won't know for sure unless more people try this earlier in their TSW journey.  So far though reports coming into me are VERY positive even those early on in TSW (less than 6 months).  My opinion now stands that it is not coincidental.  My symptoms were too severe and ongoing with barely any breaks at all.  To have such huge drastic changes to the point where I could go back to work and function again for over 2 months now without any serious flaring is just TOO coincidental.  I do however believe I may end up flaring at some point but not to any such extreme I once had.  I have had a fear of it but now seeing "micro/semi-flares" here and there that are barely anything make me think this is the worst it will get from now on.

I am no where near healed.  I still suffer with fatigue.  Not crushing fatigue as I can work 12 hour shifts as an ER nurse in a busy trauma hospital without falling on my face. I do take a few hours on each day off to relax. But I still get the shopping and errands done each week working full time.  I also continue to stay on top of home schooling my 3 kids.  I just feel tired by evening. Yesterday I just couldn't get the energy to do the evening dishes.  Hubby did them this morning before leaving for work while I slept in.  (He's a keeper!).  But I am exercising more - at least 2-3 times per week on my elliptical approx 35-45 minutes each  time. (My resting heart rate is now down to 68 - down from the 90's  when I first started TSW).  I still itch a lot and break open some areas of skin.  I have redness (more pink than red) on my neck every few weeks.  Not sure why, but it comes in waves and feels irritating.  No oozing or pain, just a slight raw feeling at times that can leave a burning sensation.  It does not stop me from doing anything, but it irritates me and I cannot wait for my neck to heal!!  It has been the worst area during TSW to deal with.  Showers are a hit and miss.  Took one tonight with no problem....slight burning on a few open areas I just scratched.  Otherwise, it felt good....even on my neck! But some days my skin feels like it will burn if I shower, so I take a bath instead that day.  This is how it was  for many years of having "eczema".  Sometimes showers felt great and other times there was no way I was able to shower without burning - I learned over many years how to gauge the feel  of my skin to know if a shower was safe or not.

And just to clarify my opinion a little further - I do believe moisturizer withdrawal played a big part in my healing, BUT I have been in MW for over 2 months now and I still oozed last week when I was taking the crystal form of MSM.  I stopped oozing as soon as I switched  back to the powder form.  It was slightly painful and very itchy - more than my baseline itch.  I do not like the ooze!!  It grosses me out - the smell makes me nauseated.  So while I think MW plays a role in my healing, I believe the MSM and other 3 supplements play a huge role in the overall state of my skin.  I think if one can get to the right dose of MSM to stop the ooze, then trying MW might be less painful.  Just my opinion, though I do know someone personally who is trying this approach and finding they can stop moisturizing significantly more with the MSM and plans to stop altogether soon.

Disclaimer:  I am not a doctor and in no way do I promote that TSW can be cured by MSM or any other supplement or drug.  I do believe each and every person needs to do their own research and make their own informed decisions about what to try and what not to try to help with their TSW symptoms. I can only write about my personal experience and what others tell me works for them.  It is important to talk to your healthcare provider before starting any new supplements or medications.    

Monday, December 9, 2013

Semi-flare again? And Pictures!

I was supposed to blog yesterday and catch up on all my emails and posts. Unfortunately a cold took hold on hubby and kids....coughing and sneezing everywhere!  Hubby never takes off of work....he is never sick.  He took off only 2 days for his concussion.  So when he said he couldn't work, I knew he felt really bad.  So off I went to work for him.  Nice how we can do that....he will just work one of my days later in the week.  But that put me on 3 days in a row - something I swore I would not do again anytime soon! But we do what we must!

Happy to say it didn't affect me like last time.  I think when I worked 3 in a row the week before and had my 1st IV glutathione, I too was suffering from the virus.  I think it just took its toll on me with trying to heal and all.  This time working 3 in a row was still tiring but not nearly so bad.  Plus I had my 2nd IV glutathione last week and I feel it helped significantly with my skin and energy.  With that said I, even though I felt great the first few days afterwards....little itching  and my skin feeling soooooo smooth, I did "break out" yesterday.  Not sure I can call it even a semi-flare.  It was more the constant hand washing at work irritating the cr*p out of my hands (most nurses have dry cracked hands from this alone), and being on my feet 12 hours a day causing some swelling in the legs.  My pictures show little redness or swelling - it's more an irritating little thing than a flare.  Also I switched my MSM from powder to crystal form - but I think I ended up with more swelling because the crystal form may not be as strong.....not sure, but going back to the powder form just to play around with it and see if there is a difference.

I also had a few patches develop on my face- I showed the worst side  - always my right side - in the pics so you can see what I mean by not knowing if this is a semi-flare or just because of the MSM change. It is so minor yet it's there and I need to let you all know about it!  :)   My neck on the other hand is done with the itching and redness!  It's perfect color skin, but healing from all the scratching I did!

Also wanted to let you know - I will get to all your comments!!!  I appreciate you all reading my blog and commenting!  I have a ton of private emails as well to get to! But I will get back to all of you!  I won't always be able to get back to each of you the same day because of my long work days, BUT I will get back to you!! :)

And here are the pics from this morning....don't mind me in my robe and pj's....going to relax and lounge today!


Face still very clear except for small patches on chin, right cheek and under right eye.  Nothing that bothers me, but there and needs to be reported!


Neck dry and scabby....hoping for the scabs to heal with IV #3 this week!

\\Left arm giving me a little grief...dry and itchy so I keep  opening the scabs!


Right arm looking great!


Left leg looking awesome!!! So want to shave!


Right leg just not quite ready for shaving/waxing yet....soon though!!


My right foot and it's on again/off again "flare"


Cracked dry hands!!  Not horrible by any means compared to TSW - but working as a nurse can cause this regardless of eczema or TSW!

Thursday, December 5, 2013

2nd Injection & Fear

Today I had my 2nd IV glutathione. It went well and I had no reactions or side effects.  The only negative I noticed both times is a strong smell in my urine - but the nurse said this was normal as the glutathione is ridding the body of toxins.  Makes sense, but highly unpleasant especially since I have to go to the bathroom every 30-40 minutes.  I increased my water intake today knowing my body would need it for flushing, but I seriously feel like twice the  amount has come out than I took in!

I had a wave of energy but it was much shorter acting than last time - maybe 4 hours.  But I was able to sneak in some exercise during that time!  Then I crashed....not falling asleep but I felt like I couldn't lift a finger if I tried!  That lasted for about 1.5 -2 hours.  Thankfully I found enough energy to make a quick dinner so the kids wouldn't starve!  :)

The biggest difference is barely any itching at all!  Seriously it feels so good to not itch!  Also no minor irritating areas or burning since the injection.  I know this will not last but I will enjoy it for today!

Now for the fear part.  I have had increasing moments of mild fear/panic that my flares (as I used to have) will return.  Honestly, on a rational note, I feel like the supplements have truly given me my life back and that they have changed my skin for the better.  I don't think I will ever go back to that given how much my skin has really changed.  But then I remember reading all the blogs of those before me who have these amazing breaks and then "SNAP" the flare comes raging back weeks or months later.  And now that I have been feeling so good for 2 months now, I feel like I am closing in on some invisible deadline....it's as if I am getting closer to the time when my skin is going to turn on me and flare horribly for months to come.  I can't get the stories out of my head.  I spent hours on a daily basis the first few months reading other fellow warriors' blogs.  I was basically home bound so I just poured over their stories, soaking in their pain and "timelines".  I wanted to get some idea of what I was in for.  I had been through a sort of withdrawal once before - going from very potent steroids to a smidgen of over the counter strength.  I suffered for about 3 years without knowing what the heck was going on.  This time around I experienced a lot of the same, but also much different symptoms, so it really helped to read how others went through TSW - it gave me a bit of a clue.  I know no one follows one exact path with TSW, but knowing what others dealt with helped me to know that my symptoms were not off the grid per se.   But all those stories now seem to haunt me.  The phrase, "NOTHING but time will heal you" is glued in my head even though I don't believe it.  I somehow feel like I am waiting for a bomb to  go off.  It doesn't seem possible to be nearly healed at 9 months into TSW when I used TS for 30+ years.  So all of a sudden I have these doubts and fears - they are fleeting, but coming more frequently the past few weeks.  I somehow have to just let it be....what comes my way I will deal with it then.

So I will just remind myself over and over if I have to what happened today - before my injection.  You see last night I came home from work exhausted.  I have not slept well since starting the supplements 2 months ago.  Funny I was able to sleep during the worst parts!  But I stopped my cocktail of benadryl, tylenol, and ibuprofen.  The MSM I take is a natural anti-inflammatory.  It has a side effect of more energy hence the problem sleeping I assume.  I stopped the ibuprofen because I didn't want to have too many anti-inflammatories in my body. I stopped the tylenol because the NAC I take is supposed to protect the liver from such things as tylenol. Well last night I just couldn't take another tossing and turning, waking every 2 hours night.  I decided to skip the MSM and other evening supplements and just take my old cocktail.  Sure enough I slept 7 hours straight!  No tossing or turning!  I was overjoyed!  I decided that I should take the second dose of MSM around 3-4 pm and take my old cocktail right before  bed.  But since I only had one dose of the MSM yesterday, I had a bit of a drawback for about 10  minutes this morning.  I had the unpleasant experience of oozing from my left hand.  Yes....it only lasted 10 minutes, but the smell was unmistakable!  The MSM I believe is what keeps me from oozing and swelling.  The glutathione I believe is responsible for the ever strengthening of my skin.  The MSM has a short term effect whereas the glutathione has a longer term effect if that makes sense.  So missing one dose causes a small amount of oozing....I experienced this in the beginning of taking the supplements when I was not 100% compliant.  It didn't take me long then to figure out that missing one dose would bring on the ooze.

That experience has taught me that I am more than likely on the right track here.  I feel more and more confident in what I am doing and researching.  Of course I am still human enough to know that life is not all that simple and easy. I also know that I could very well be wrong and may experience another flare some day soon.  I just wish I could be this rational in my emotions! Unfortunately I haven't quite mastered my emotions!  Thankfully I have enough control over the fear to not let it turn into a panic attack.  I will just continue to pray for strength, guidance, and knowledge,  It's all I can do in the midst of all this.

I work the next few days....then I have a few days off when I will get some more pictures up!  Hope everyone is well!

Tuesday, December 3, 2013

Phone call with ND & Moisturizer withdrawal

Today was a much better day...the mini-flare on my neck is nearly gone....it is still present on my chest and has moved to the area near my arm pits. It is almost like it is lingering on the lymph nodes.  Nothing major except the on/off burning.  It's weird because my neck still has some burning but the skin is not broken or raw - in fact it feels really smooth and soft.  Can't figure out why it is burning other than possible toxins are still being released.  Oh well....I can live with it!  :)

I received a phone call from my naturopathic doctor (ND) today.  He was checking in with me regarding the glutathione injection I had last week.  He seemed to have the same idea that the increase in itching and fatigue were probably a healing reaction.  He suggested I try 3-4 more injections - something I had talked to hubby about last night and decided to try.  The ND said 3-4 injections should be enough to see a difference.  If no significant difference is noted then we know it will not be worth it to continue.  He said when he saw me briefly last week when I saw the nurse for the injection, he noted an improvement in my skin.  And that was with just the oral supplements.  I am going tomorrow for the blood work - was going to go today but got up late and had to head to the Amish farm for our raw milk which is an hour away and in the opposite direction of the lab.  But the lab is on my way to work so I will leave 1/2 hour early tomorrow for work to get the blood work done.  Figured I saved well over $200 shopping on cyber Monday for Christmas so I will use that extra for the lab work.  Anyway, the ND spent a lot of time answering questions I had about the glutathione and MSM and the gene mutation.

Now about moisturizer withdrawal (MW).  There is much talk about this and research being done in Japan that shows MW is critical to TSW.  I started MW at the same time as the supplements.  I know for a fact that it has played a huge role in how good I feel.  I know that when I was slathering vaseline or coconut oil or raw shea butter on, my skin would itch severely an hour or so later causing me to literally shred my skin apart.  If I had to make a bet I would bet that my huge improvement is 50% MW and 50% supplements.  I think both played a critical role in stopping the ooze and decreasing the redness and swelling.  And more importantly the pain!  I have noted that others who are trying the same supplements as myself AND still using moisturizer are seeing big improvements in their skin.  I also know people (like fellow TSW sufferer Dan) see huge improvements with just MW and no supplements.  I did both and have not only seen significant improvement but have gotten my life back.  I am back to working full time, homeschooling, cooking, and getting things done around the house,  I no longer have brain fog.  I would not be able to work with any brain fog - I need to be completely on the ball at work  I have had some fatigue since going back to work, but that is probably normal.

So my opinion is MW is very important to less severe symptoms.  The first week is tough as the skin burns and hurts intensely with every little move.  But after 5-6 days that goes away and it just feels dry.  AND I feel the supplements are also critical to reducing  oozing, swelling, and redness.  The first 4-5 days of the supplements actually are worse for most - maybe a healing reaction?  But then there is a clearing and significant improvement in symptoms. This is my opinion and my experience. It is also based on a handful of other people's experiences as well.

Monday, December 2, 2013

The good and the bad & 2 months on supplements

Today marks 2 months of being on the 4 supplements for possible methylation gene mutation.  I called this morning to find out the cost as my insurance does not kick in for another 3-4 weeks.  It will be $250.  A lot less than I expected.  Going to talk to hubby later tonight and make a decision on whether to wait or get the testing done now.  Insurance may or may not pay for it so I might just go ahead and get it done tomorrow.  We will see. 

Let's start with the bad....between yesterday and today I have had another "semi-flare" on my neck and chest.  I looked back on my blog and this happened last month as well...I thought it was worse this time but looking at the pictures from last month when my neck was flared, it is mild in comparison.  I sort of flipped last night because the burning didn't go away - I started thinking of the possibility of going into a full body flare again and that made me lose it.  I cried for about 10-20 minutes.  Poor hubby - he was trying to tell me what I should do (call the ND, increase the glutathione, etc), but all I wanted was a shoulder to cry on.  He just rubbed my back and stayed silent.  I honestly don't think I am headed into a flare - not one that compares to anything like I had the first 7 months of TSW.  The only area bothering me is my neck and chest and a few small spots on my inner arms.  That's it.  My legs and feet are nearly all clear - they have some scabs that are healing but that is all.  My low back has some dryness and scabs as do my arms. My sleep has been the pits though - waking twice a night every night is driving me mad!  I slept so well the first 7 months!  I was taking Tylenol, motrin, and Benadryl every night before bed and sleeping 6-8 hours soundly.  Since starting the supplements I stopped all that except the Benadryl as the MSM acts like motrin but is more natural anti-inflammatory.  The NAC actually protects the liver from Tylenol, so it's a moot point to take both.  I have tried melatonin and a few other sleep aids with no effect.  Don't get me wrong, I still get 6-8 hours of sleep, but when my sleep is broken, I am more fatigued.  That leads me to the other bad thing - the fatigue...not bringing me down but it got worse after going back to work (duh!).  I understand it, but I just don't like it!! 

Now for the good....still NO OOZE!  2 straight months ooze free seems like a dream!  No swelling either - anywhere!  No pain except the burning in my neck the last 2 days....nothing compared to what I had the first 7 months.  Scabs are healing faster it seems.  My hair is growing and getting thicker (yippee!!).  My nails started growing again it seems just this week - I swear they stopped growing when I started the supplements.  The biggest good is that the last few days I went from an increase in itching (since the IV glutathione) to very little itching - especially the post meal itching - I hardly notice it anymore.  Less itching = less scratching which = less broken skin!  With that I noticed the past few days the most clear parts of my skin are SUPER soft and smooth.  It's weird because I noticed my skin getting softer the last month but this is like a huge burst of softness.  Can't explain it - would have to experience it yourself to fully understand. 

People keep emailing me to ask how others are doing with the supplements.  All I can say is so far most have noticed a reduction or complete cessation in oozing and swelling.  No one has sent me before and after pictures yet....but I figure it will be another few weeks as many have had a hard time finding the right glutathione.  Some are only taking the MSM and still seeing the ooze dry up.  There is still suffering going on, but so far things are looking better.  I think any reduction in symptoms is something to celebrate! 

Where am I going from here???  I still ask myself that.  Do I focus on the gene mutation or the supplements or a combo of both?  I want to be able to prove that the supplements are needed if my theory is correct that those f us going through TSW have this gene mutation.  But I also want to focus on the IV glutathione.  I want to talk to my ND and experiment a bit with it - maybe taking 1 injection a week or every other week for 2 months straight.  I felt great the first 6-8 hours after getting the injection then felt worse.  I suspected the worsening itching and fatigue was a "healing" reaction.  I know I have a significant amount of toxins built up in my system so that would make sense to me.  But I also do not want to waste the money if in fact I do not have the gene mutation - I would then be able to produce my own glutathione naturally with the supplements I am taking.  The results of the blood work take a few weeks so I am hemming and hawing on all of this.  Christmas is before us and I would rather give my kids a nice Christmas given the horrid year we all have had with me being so ill.  I just want to spend my money wisely.  I know many would tell me to just save my money.  I would if some of the others going through TSW had tried the glutathione and told me if it helped or not.  But not one person has told me they tried it.  I heard a lot of people spending thousands on vitamin C injections, but not glutathione.  I know some people would say not to try any supplements and just let the body heal naturally.  I get that - but it's like telling me not to take my epi pen when I get stung by a wasp and go into anaphylactic shock - I should just let me body swell and wait for it to pass.  OK - that's a bit drastic of a comparison, but my point is if there is something out there that can reduce the pain, redness, swelling, and itching of TSW, wouldn't you want to know???   My answer is a big whopping YES!  Hence why I have been on this mission to study what is happening with TSW and how to help the body get through it either faster or with less suffering.  Anyway, I know I sound a bit defensive - don't mean to....thing is no one said anything or provoked me.  I guess I am just really passionate about finding something to help others.  I read the forums and see the pictures and cry for all those suffering - it is so gosh darn awful! 

OK - off to answer my emails and clean up after dinner.  :)

Sunday, December 1, 2013

Where is my healing REALLY coming from???

I am not bringing this up to point fingers or anything drama like!  I am mentioning I had a comment from a friend going through TSW because I felt it deserved a response for all to see.  Dan, I love your passion and your commitment to helping those with TSW!  Your comment provides me an opportunity to be real here.  You see I do not think my healing is directly from the supplements, the moisturizer withdrawal,  or even time.  My healing comes directly from God.  This is MY belief and I am not pushing it on anyone.  I just want to share my reasons here.  You see when I  went through my first withdrawal 8 years ago not knowing what was going on, I cried out to God many times for an answer.  I prayed for a cure to my "eczema".  I remember telling my wonderful sister that I didn't think God was listening to me at all.  She said He was and would answer my prayers, but in His time, not mine.  Trust me when I say I was NOT happy with that answer!  But  things improved in a few years and got much better after a change in diet so I thought God had answered my prayers.

Then I started using a little over the counter TS here and there for those left over spots....big mistake.  I started getting worse over a few years time and became upset with God again.  I couldn't think of what I was doing wrong to upset Him. Of course I was not as far in my journey with Him then as I am now.  I prayed again and again for answers. That is when I found out about TSW.  He had answered my prayers after all!  But it took 8 years.   Then after seeing so many people for so long with TSW, I started praying not only for faster healing for myself,but so I could help others not suffer so.  I went to a faith healer a few months ago.  He was a remarkable man.  It was only a few days after that day I found out about the supplements. And a few weeks later felt remarkably better.

Yes I had also stopped moisturizing around the same time.  It ALL made a difference. The reason I am so passionate about the supplements is because of the science behind those specific supplements. There is science now behind the MW too and I agree it helps.  But since others have been sharing their stories with me in private emails about the supplements, everyone has seen improvement so far....some have done MW as well but a few have not and they are seeing improvement as well.  So regardless of MW, people are seeing a difference with the supplements.  I also agree those that do MW see a difference as well.  I think I have seen a huge difference in my skin because I did both.  I just know some people cannot mentally do MW as it requires a will to get through some really bad pain and I would not have been able to do it had I not been staying at  my mom's, knowing she was there to help with the kids.  It was a very difficult week for me. I could not have done that without the extra support.

What I have been doing is waiting to hear  some good news about the supplements starting to work, then encouraging the person to go towards MW if they have not already.  There is a lot going on behind the scenes of my blog here.  I spend a lot of time emailing people now and keeping tabs on how everyone is doing.  I have given only brief snips of how others are doing. More good news comes in almost daily.  I am also working full  time so I am  limited on my time.  I have been devoting a  lot of time researching glutathione - the major component involved here with the supplements.  I am not just trying things on a whim here.  Far from it....I spend hours every week researching and carefully considering all that I do and say. I truly believe MW is important -  very important!  But I only have so much time so I have focused on the glutathione because I am going on a theory here that the TSW may be from a genetic mutation causing our bodies to produce significantly less glutathione than required to process and eliminate the toxins in our bodies. I feel this would be better time spent given if we find that all suffering with TSW have this mutation, we can do something about it.  The MW is great for some symptom relief but I personally do not see moisturizer as the cause of TSW....just an aggravation,

I hope this makes sense!  I am not picking on Dan at all...in fact I think his MW drive is crucial in symptom relief and am glad he is helping others with this!  Me included have benefited from it.  But God uses all of us in different ways and I feel God pointing me in the direction I am in currently.  He has given me the strength to do all this and I believe He is helping me to help others.  I could not do this on my own I can assure you.

So the bottom line is God has provided me with the answers for healing.  He has answered my prayers so far - not in the time I would have liked, but they have been answered!  I will continue to pray for others, to pray for answers so others do not suffer so much, and to pray for the strength to continue on this journey (on top of working and home schooling).  I feel tired most days still. Not the crushing fatigue I once had, but a tiredness nonetheless. I get through it with prayer and encouragement from others. I have made so many dear friends along this TSW journey - all of which I am beyond grateful for!  So many wonderful people in this world - it gives me such hope and helps make my tiredness disappear some days!  :)

Thursday, November 28, 2013

Being Thankful!

There are many things I am very thankful for.  Most importantly God, my Savior Jesus, my family, friends, a good job, food, a roof over my head, and clothes.  I could elaborate on each and every one.  I have been truly blessed in my life.  Yes I have suffered with eczema and a few other minor things, but overall I have had decent health.  Learning about TSA truly gave me a renewed state of health.  Yes, I have had to suffer greatly this year, but the end result should be feeling better than I have in a very long time.  I have a ways to go yet. I still have itching and open skin.  I still have fatigue (although thankfully not the crushing  fatigue that gave me serious brain fog).  I still have a bit of extra weight on me that hopefully I can work off once feeling more optimal.

They say pictures speak a thousand words.  Below I will show my lowest and highest moments of my skin.  The majority of my good pictures were taken today.  I am now more convinced than ever that the supplements are at least keeping my symptoms to a minimum as it has now been 8 weeks exactly since starting them and so far no more redness, oozing, or pain.  And even though my skin is dry in places, I no longer shed.  I do not vacuum piles of skin anymore.  Nor do I have to change my sheets all the time from tons of flakes every where.

So here are some before and after pictures showing just how thankful I am today!






























Wednesday, November 27, 2013

100th Post and Feeling Different!

This will be my 100th post! Woo-hoo!  :)  Not sure why I find that exciting, but I figured I would just get that out there!  :)

OK, as to feeling different.  Going to have a tough time explaining this. I've tried for the last hour to think how to describe it, but still failed to really put a finger on it.  So I will start with what I do know...

I am itchy.  Sort of.  I was up most of the night itching and itching and itched all morning.  I actually did not eat until after noon because eating makes me itch and I couldn't comprehend itching more - even for just a few minutes!  Then I took a nap this evening...woke up not itching.  My skin feels weird.  It's dry, but soft at the same time.  Huh?  I told you this was hard.  There is a layer of dryness (though no flaking) on the top, but overall my skin feels soft to the touch.  I keep touching it trying to figure it out, but my skin has never felt this way!  If someone with "normal" skin touched my skin they might describe it as slightly rough.  I think anyway.  But even that is too harsh of a word.  But super soft it is not.  Weird, I know.

I am tired. Sort of.  Like I stated above, I had poor sleep last night.  The ND nurse said I would sleep really well my first night after the injection.  EVERYONE does is what she told me.  Ummmm, not everyone clearly!  I must be the reject!  :)  Seriously though it was a rough night. However, I did get up by 10 am and actually had enough energy to cook and go shopping.  I felt full of energy.  That is until 5 pm hit.  I literally passed out on the couch....slept for just over an hour.  The kids were looking at me, then ever so quietly asked if we could have dinner.  Huh??  I have to feed you guys again???  LOL!  I actually had the kids do most of the work as I was so exhausted!  Now I am back to having tons of energy!!  So bizarre!

My skin feels great.  Sort of. Overall it feels good...dry patches with recently broken skin (from all the scratching last night) actually look  like they are healing.  No pain.  But I still have those irritating areas on my neck that JUST WON'T GO AWAY!  So frustrating!  I can go to the store and do things around the house without thinking about it....it doesn't bother me 24/7.  Just certain times throughout the day I just get the ice out because it just feels so irritated! While I see all this healing on my sores and scabs, the neck area has always been the one area that never seems to heal.  I have had weeks where it was clear, but that's it.  The majority of the last 9 months of TSW, no matter what part of my body was flaring, the neck was either flaring or irritated.

My thoughts:  all the itching since starting the supplements and just since yesterday with the injection I am thinking may be due to the detox effect.  Glutathione is required by all cells to clean the cells - a detoxifier if you will.  It gets severely depleted when one takes a lot of medications or become chronically ill.  By taking in more glutathione than the body has been making, it gives the body a boost in detoxification.  My thought is since the skin serves as an eliminator, it only makes sense (to me) that the body is releasing toxins into the skin (along with the other known elimination routes).  With toxins on the skin, itching makes sense.

Itching is one thing others who are taking these supplements say has increased.  And the oozing has decreased.  I only have a pool of 4-6 people here (not everyone is taking all the supplements...a few are taking 1-2).  So it seems we will need more time to determine if everyone else will go the same route of itching more, no ooze, no redness, and skin feeling stronger.

I still think the way to go here is to find out if I have this gene mutation.  Then try to find funding to test 20-50 TSW warriors for the same mutation.   The gene testing takes weeks to months for results.  If more people have significantly positive experiences with these supplements, then I may just try to do a study based on the supplements alone.  It may be that one does not have the gene mutation, but is still severely depleted in glutathione, hence helping their symptoms through TSW just by taking the supplements.   The next few weeks will tell.

BTW, I did not go get my testing done today....horrible weather here in the Northeast and I just had too much to do to get ready for Thanksgiving! Gobble,gobble!

On that note, Happy Thanksgiving!  I know personally I am thankful for finding out about TSW when I did. I truly believe it saved my life!  Many thanks to Loren (Kline's mom) for blogging about Kline's TSW journey - it was something she wrote on Facebook on a shared group we belong to that brought me to ITSAN.   I am thankful to them as well for bringing about the awareness of TSW to so many people!!!

I am also thankful for my extremely wonderful husband and children for helping me through this and putting smiles on their faces in light of the storm I had overhead for so many months!  They are my everything!  And also to the rest of my wonderful family - for their love and support and keeping it all real!