Friday, January 17, 2014

Cost of Supplements & Holding your breath!

I thought I would break down once again the cost of the supplements I am taking for my MTHFR gene mutation.  In the right sidebar is a new video I uploaded on my blog on this mutation.  It is full of GREAT information, however can be difficult to follow at times.  I have viewed it twice and learned more in my 2nd viewing!

For those wishing to get tested, one only has to ask their doctor to be tested for MTHFR.  Some countries may not offer this.  However here in the U.S. it is available through most labs (with a script from your MD). The cost I have learned is approximately $150 out of pocket. Not horrible, but pricey for most.  It will give a clear indication of the specific mutation in the chain.  Since there are many variations, it may be worth the money.  However for those who want to try the supplements without testing, I have broken down the absolute necessary supplements into a monthly figure.  These are the supplements that IF you do have the MTHFR gene mutation, should help alleviate your TSW symptoms like it has mine.  If you don't I have no clue if it will help or not.  I do know that the supplements have very few side effects.  The B vitamins that are listed are water soluble meaning any excess the body does not need will be excreted.

I have been on these supplements consistently for 3 months now.  I have seen my skin go from really really bad to not so bad at all in the first month.  I have been living at this not so bad phase now and my only thing I can complain about are my hands...still horrible but I went back to work and since returning to work where I must wash my hands over 60-70 times in one shift with harsh chemicals, my hands have been really bad.  I can't say if it's TSW or the harsh chemicals -  probably a combo of both.

The one thing to keep in mind is IF you have the mutation and start on these supplements, you will be healing ALL your cells, not just your skin cells.  Therefore, your healing may differ from mine.  If you have more internal cellular damage, it may take longer than a few weeks to see initial improvement.  So please bear that in mind.

So here are the very basic necessities for those with the MTHFR gene mutation (I take more supplements than this for basic health):

L 5-MTHF by Seeking Health - 1 mg (1,000 mcg) twice a day
$17.95 (on for 60 caps - will last 30 days

Active B12 Lozenge with L 5-MTHF by Seeking Health  - 1 mg and 800 mcg respectively twice a day
$19.95 for 60 tabs to last for 30 days (this will give you a total of 3.6 mg L 5-MTHF the active form of folic acid - this will be useless without the active B12 so taking them together is good and taking extra L 5:MTHF is good for those with the worst gene mutation).

NAC by PURE - 600 mg twice a day
$44.20 for 180 caps or 90 days worth - $14.73 per month

MSM powder by Solger - 5-10 grams per day split in 2 doses
$10.38 per bottle - will last a month or slightly less at the 10 gm dose.

So that is total it works out to $63.01 per month.  Not sure whether it is high  or low compared to other things people have tried.  For me it is more than worth it given I have been able to return to work. I have also gotten my life back - doing  family things, exercising again, and so forth.  You must also know I am doing things along with these supplements to help my skin - including moisturizer withdrawal (the next best thing you can do for TSW skin and tanning).

As for holding your breath - I am referring to all those who are waiting to see if I succeed or fail with this treatment.  I get it - I really do because I held my breath for the first 2-3 months on these supplements.  However with the research I continue to do on this gene mutation, I am more and more convinced each day that I will not suffer any major setbacks.  Yes I will flare slightly - but the few flares I have had in the last 3 months, I have been able to work and function.  The flares are nothing compared to before taking the supplements.  I mean NOTHING!  I will have a burning sensation it lasts barely an hour and is localized to a few spots now.  I still itch but the itching is reduced by over 75%.  The pain is reduced by over 95% - I consider the small burning patches from time to time in the pain category.  My skin breakage has been reduced by about 60-70% depending on my micro-flares.

So you can continue to hold your breath waiting for the other shoe to drop per se.  But for me I decided that I can breathe freely now knowing I have conquered this beast.  Do I fear a relapse?  Well sure to some extent. When I have a micro flare, I will get a few minute phase where I think "What if it's coming back?" (meaning the big ugly flare).  But it's now a passing thought - so short that I don't hold my breath at all anymore.  I have moved on with my life...not allowing the annoying left over few spots to bother me.

I bought new running sneakers...and a beginner's book on running.  Yep, I'm going to RUN!!  I have been using my elliptical and will continue to do so on really bad weather days.   But I am going to be the runner I always wanted to be.  I was in track in HS...the fast sprinter as I could never run far.  Distance running was out of the question with my so-called asthma - the asthma that is now completely gone!  So I bought 2 beginner books and have started walking.  Typically hubby and I will watch a show on Netflix when one of us comes home from work and before bed.  But I told him yesterday that we are both getting in shape together.  From now on we will be walking before bed....not the ideal time but we are both not morning people so mornings before work will be very difficult.  Last night we ventured out and walked about 3/4 mile.  Going to start walking sprints, then running spurts to build up my ability to run further.

Looking forward to a very bright future!!  :)


  1. Hi Tracy :)
    I've been following your blog for a few months now and find it so so interesting!

    I haven't started my TSW journey yet as I felt I need to be mentally and financially ready to deal with this monster…. I really look up to those who are able to just do it! I have set my beginning date for beginning of April though and in the mean time have been experimenting with a few things that have seemed to help people in the midst of TSW.

    I completely stopped using moisturiser everywhere except my face at the beginning of december and it actually helped me cut down my TS usage by half. Its so strange, since I cut down I can really see the red sleeve starting to develop and then when I apply again it disappears over night! Such a weird thing to witness

    The other thing I've found really interesting is the gene mutation research you've been doing... I'm going to get tested for this hopefully in the next couple of weeks. Im really hoping that with the supplements for the mutation and the moisturiser withdrawal both underway before I completely stop the steroids that my initial flares won't be to bad.

    I've got my fingers crossed but you never know I suppose… I've been using high to mid-strength TS for the last 13 years and Elidel daily on my face for the last 7. Its going to be a crazy ride but everyone gets there in the end and I'm so happy for you that you'r doing so well!!! :)

    1. Muriel,
      Thank you so much for your comment! Don't concern yourself about comparing how you stop TS to must do what will work for you! I think it is a good thing you are preparing yourself so well!! I find it fascinating about your MW! That is VERY interesting! I pray all goes well for you...please keep us posted on your progress...if you decide to blog, let me know so I can get you on my blogroll! MANY of us will be very interested in your journey and outcomes!!

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  3. Hi Tracy Thanks for the update on your supplements. As I am not in any medically minded, I just wanted to double check with you that to make the 5-MTHF effective it needs to be taken with the B12 supplement? Also I found the picture you posted in the TSW Study Tab of your supplements very useful. If you get some time it would be great if you can update it with the supplements your taking now (I can't see the B12 in there). I'm glad things are continuing to improve for you, I just hope your hands catch up soon.

    Muriel - good luck with the TSW, hopefully with all the research you've done already and the great information that is now coming out from various blogs (not least Tracy) things will be a lot easier for you.

  4. Hi Amanda....great idea! I will get a new picture up soon! And yes, according to the information I have been reading and watching, taking the ACTIVE B12 is critical to allowing the 5-mthf to work in the body.

    1. Thanks Tracy. I'll get the B12 ordered then!

  5. Do share on your progress when you have started working and sweating out!
    I've been playing soccer about 1-2 times weekly, and the sweating is improving my skin alot.
    Hear from your good news soon!