Saturday, March 29, 2014

An Important (and encouraging) Story!!!

This is "John's" story.  I am telling his story here (with permission from his mom) as it is a very important story to hear!  It truly shows how the MTHFR gene mutation plays into TSW.  I spent a lot of time between emails and a phone call to make sure I got this story correct!  It gave me so much hope and joy!  Please take the time to read this post!  Thank you!

 John is a young boy (grade school age) who has had eczema since a baby.  He has been prescribed TS (Triamcinolone) for the last 4 years and Protopic for 1-2 years.  He saw an integrative doctor 12/2012 and she started him on supplements and a strict diet.  John's mom continued applying TS except for about 5 weeks in January....she said she thought the diet and whatnot would help and he would no longer need the steroids.  But his skin got significantly worse - he appeared to suffer a flare of TSW but his mom was not involved in ITSAN at that time.  She said he would awaken multiple times a night coffered in blood.  After 5 weeks of this she started applying the steroids again.  She said she tried to stop many times but by day 5 or 6 of no steroids his skin would get so much worse - so she would apply the cream again. 

Then in May she got the results of some blood work the integrative doctor did.  One thing was that he tested positive for the MTHFR gene mutation.  John's mom at this point didn't really look into it as she was pretty exhausted from researching everything and anything related to his eczema (Oh that sounds so familiar!).  But she added in the methylation vitamins the doctor recommended (active B's that I take for the gen mutation).  She said she remembers the day well....about 2 weeks after starting the active B vitamins, on May 24th, she applied the TS for the last time....she said 5-6 days later he no longer seemed to need the steroid cream.  (If you recall I went back to work 3 weeks after starting my supplements for the MTHFR gene mutation).  Here is a direct quote from her (with name changed) that describes his skin after starting the supplements:

"He continues to be rashy, dry, and exceptionally itchy.  In comparison to other TSW warriors I read about, I think 'John's' mini withdrawal in January was as bad as most.  But, his second withdrawal in May was different and easier....He continues to sleep at night, thank goodness."

This puts John at 10 months TSW.  I explained to John's mom how my mini-flares have been since starting the supplements and she states that is how John's skin has been.  She emphasized that this has not been a picnic for them by any means, but compared to what others have been through she noted that his TSW seems to be milder in comparison.  She ran by my MTHFR information recently and wanted to share his story with me as she believes like I do that it may be the key piece in how bad one suffers with TSW. 

John's story is important as he started the supplements prior to stopping the TS for good.  Considering he still suffers with TSW at 10 months I think that the supplements do not shorten the suffering of TSW significantly, but it definitely seems to lessen the severity of symptoms.  Now there are other things I am just now thinking about that may or may not prolong his TSW.  I forgot to ask if she applies any moisturizer to his skin.  She did mention he does not bathe a lot as the skin still burns with water, but I completely forgot to ask about the moisturizing.  I still think using moisturizers with TSW and having the gene mutation will prolong the TSW.  But taking the supplements will definitely lessen the symptoms. 

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