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.  :)


  1. Tracy, you said "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." On the less suffering part, it really is becoming obvious that not moisturizing during tsw contributes significantly in this area. More so than anything else.

    You also said, "I read the forums and see the pictures and cry for all those suffering". I know exactly what you mean and have felt the same pain. I've tried to reach out to people and help them. Again, moisturizing is the main culprit for the extreme and prolonged discomfort.

    I really don't think many people understand the importance of this information as it pertains to the overall comfort levels during the recovery of tsw.

    My tsw has been a breeze since stopping moisturizers, even at my worst times like right now in the middle of my third or fourth flare. The whole process of tsw just hasn't been anywhere near as bad as it was when I was using moisturizers. It was nightmarish then, like what I read in peoples blogs.

  2. Hi Tracy
    I have flicked through your blog but can't find the mysterious 4th supplement. MSM, NAC, glutathione and ....?
    I have been using MSM from the beginning and also used DMSO topically for the first 3 weeks until the pain became unbearable. I have not mentioned the dmso to anyone (as it is controversial in general but I have used it in the past) but I believe it reduced my initial flare significantly (symptoms were less than last time I went through TSW). It stopped the ooze and swelling but not the red burning. Once I stopped using it I got worse.

    I also take reishi mushroom extract as an anti inflammatory and immunomodulator and silica for skin replenishment.

    1. Hi Ruby,
      The 4th supplement is 5-mthf....the active form of folic acid.