Tuesday, June 21, 2016

MAJOR UPDATE!

No, I'm not flaring, BUT I have stagnated again with my asthma and hives and dry eczema.  I have been doing very well on my diet, yet I continue to need 1 neb treatment a day for my asthma.  That may not seem like a lot compared to 5 or 6 per day, but I shouldn't be needing any!  Then my weight loss stagnated.  Holding at about 205-206, and it's only been a few weeks since starting to eat better. But then the hives sneak in about once every other day....very small and nothing that causes mad crazy itching, but enough for me to notice and get aggravated.  The patchy eczema on my arms is still almost gone, but a few patches just keep hanging out.  I can't really explain it, but I just feel like I'm not getting ahead here in the healing department.  I have been off all supplements except for those for my leaky gut (l-glutamine and extra gelatin).  I even stopped my active B's because every time I took them I felt off for a few days and having symptoms of over methylation.  Overall I just have been feeling like I'm missing something.

Well, one day last week I came across a post on one of my other FB groups regarding nutrition. Someone posted a link where you can upload you 23&me DNA data and they will tell you which gene mutations you have related to nutrition (like MTHFR).  I think the cost was somewhere in the $40 range for this report.  I got the report and I have 18 homozygous mutations that can be "fixed" with nutrition and/or supplements.  I then proceeded to buy the necessary supplements.  However I did not want to start taking all 15+ supplements at once - if I had a reaction, how would I know what I was reacting to?  So today I proceeded to research each gene mutation and try to decide which one I was going to address first.  Well I have the CBS mutation which basically is worse than MTHFR and can be made worse with MTHFR treatment like methyl donors (like my MSM powder).  It started all coming together as I was reading this....why my skin was getting better but my other issues were getting worse.  I almost cried (but didn't).  I was a bit overwhelmed by how much I did NOT know yet I felt so thankful for coming across this information.  The CBS mutation is actually still being studied as it presents differently from one person to another.  Treatment will be based on blood work results and individual reactions to specific treatments.  Essentially, I would not even attempt to treat this on my own!  I immediately looked up providers familiar with these genetic mutations and how to treat them.  I found one 4 hours away who will do phone consults after an initial in person visit.  He had an opening this coming Monday.  So I have not taken any new supplements.  I will be going to see him and then get his opinion on how to treat all these mutations.  I of course will keep you all informed as to how this progresses.  I have a very good feeling that I will finally be able to heal completely and live a more "normal" life that does not include a strict dietary regimen.  Mind you, my life is comparatively normal when I think back to my TSW days.  Yet, the ongoing hives and asthma were just enough to aggravate me on a daily basis.  I don't have that intense, I'm going to scratch my heart out itch.  But I still itch somewhat on a daily basis....nothing that drives me mad or puts me over the edge.  But enough where I say to myself, "When am I going to finally stop itching for good?"

So keep the chins up and the eyes on the light at the end of the tunnel!  More to come soon!

www.nutrahacker.com  (site to link 23&me data for mutations)

Physician Directory  (find a doctor who can treat you for genetic mutations - this is world wide)

2 comments:

  1. I have the CBS mutation too! Homozygous! Ugh. My appointment with a doctor is in 2 weeks, I really hope he can help me because I am SO tired.

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  2. Hi Karina,
    I understand being tired! Please keep me informed on how your appointment goes! Would love to compare how different doctors treat this! And see how we both respond to treatment. I am getting excited about my appointment in 2 more days. I'm trying not to be too excited as I don't need any more disappointment in my life regarding my health. I just want to live life without so many food restrictions!

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