Wednesday, November 20, 2013

Interesting Information and Questions that need answering...

I have come across some VERY interesting information in the last few days.  Remember my theory about the rNA being damaged from the steroid creams and our bodies taking so very long to recover from TSA because our body has to remember the original rNA of the skin cells?  Well I (and my husband) may not have been too far off if this new information proves to be the cause of TSA.  You see, a dear friend of mine on the forums told me she had a gene mutation - methylation gene mutation to be exact.  She said she was told she needed things like MSM because of this (MSM is one of the 4 supplements my ND put me on).  So I did a little research and figured out that my ND was apparently treating me for this gene mutation.  According to my research, a significant number of people in this world have one of the 40 + types of this gene mutation.  There are 2 types that are most prevalent.  Many illnesses and chronic conditions are associated with this gene mutation including many auto-immune diseases like MS, fibromyalgia, and chronic fatigue.  Apparently this gene mutation causes the body to not convert folic acid into its active form and also not produce glutathione.  These are critical in the body for detoxification.  Without the ability to detoxify, our bodies then build up too many toxins, causing any number of illnesses. 

My question then is, how many of us suffering with TSA and TSW have this gene mutation?  If we all do, then taking these  4 supplements would be critical in detoxifying our bodies from the steroids.  It could also explain why moisturizing seems to be making some of us suffer worse - our bodies just cannot process even the simplest of ingredients on our skin.  It could also explain why diet appears to help some people - a cleaner diet means less toxins for our body to deal with and making it easier for the body to fight the other toxins already in our system. 

It could easily explain why some people get addicted to steroid creams and others do not.  I am beyond excited about all this information.  I just wish I knew how to go about getting a study done.  Maybe I will talk to my ND and see if we can't petition some university hospitals for funding.  We wouldn't even need much.  I do know getting a genetic test done through "23 and me" is $99.  Even if we did not get a discount, we would need $5000 to test 50 people.  25 people with known TSW and 25 people with eczema who do not appear to have topical steroid addiction.  Or we could test 50 people with known TSW and determine the type of mutation they have against the severity of their symptoms.  The 2 more common types of this gene mutation have a possible 4 different presentations - they range anywhere from your body being able to produce only 10% of the glutathione needed up to 60% depending on which form you have. 

I may not be explaining all this perfectly as I worked last night and am a bit tired today.  But I wanted to get the info out there so people can look it up themselves and determine if they should get tested and/or take the supplements to see if they help with the symptoms. 

I continue to do well skin wise.  I am still dry all over and itchy, but still NO OOZING or even any more redness.  I am working full time in a pretty stressful place and yet I only had that one mini-flare the other week that may have lasted a total of 2 weeks but is now gone.  I may be tired on my days off but I am still going out shopping and doing household chores and cooking healthy meals.  There is no way I would have been able to do this prior to starting the supplements.  I am now 75% convinced the supplements are reducing my TSW symptoms.  I still have not gone long enough without a big flare to make that a 100% determination.  Maybe 4-5 months out?  Not sure - I will wait and see what happens and continue to blog about my journey honestly.  I am not one to try to create false hope nor try to push people to do something I am doing.  I just want to help those suffering like I did....it was a very long 7-8 months of just hell.  I will not stop fighting this fight to help others.  Too many people have already suffered for so long.....it is time to try to end that suffering or at least bring it down a few notches!  :)

6 comments:

  1. Hi Tracy,

    Very informative post. The body is more complex than we know. For TSW sufferers, we can only rely on anecdotal evidence like yours as a reference point. Waiting for funding to kick of the academic research then clinical research cycle before being marketed takes a long time. The best action for us is to be our own guinea pigs and try at our own risks.

    Continue to share your findings!
    -Leslie
    saynototopicalsteroids.wordpress.com

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  2. Thank you Leslie! I agree wholeheartedly!! :)

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  3. Dear Tracy,
    Thank you so much for this provocative information! I'll have to read it several more times to improve my understanding, but it seems so worth it!
    I am grateful to you (and your husband) for your inquiring minds.
    Rose

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    1. Thank you Rose!! I appreciate your comment - it keeps me going knowing others are interested in this as well! :)

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  4. Wow you might just be onto something here! Good luck if you are able to trial this :)

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    1. Thank you Jenny!!! Hope you are faring well! I am praying this might lead somewhere! We have suffered too much with this TSA and TSW! Want to be able to help others not suffer so!

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