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killcolitis
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Date Joined Dec 2009
Total Posts : 2396
   Posted 5/26/2013 3:30 PM (GMT -6)   
Who's been tested for this? If positive, which mutations did you have? I'm almost certain my daughter has a methylation defect and I'm waiting for test results. Just wondering if others had experience with testing/supplementation?

Somedude
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Date Joined Jul 2011
Total Posts : 3379
   Posted 5/26/2013 3:37 PM (GMT -6)   
wow, where do you come up with this stuff and those conclusions. Too bad you're not in family. With you in my corner, I'd be tested for everything that can be tested. lol
DX Ulcerative Colitis (pancolitis) - May 2011. (Remicade Max/6 wks, LDN, SCD, vitam.)

"Life is like a box of chocolates; you never know what you' gonna get. " by Forrest Gump

killcolitis
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Date Joined Dec 2009
Total Posts : 2396
   Posted 5/26/2013 3:49 PM (GMT -6)   
trust me, i wish i'd never heard of any of this stuff. I'm sure pathogenkiller's posted an overview of it recently so there's been some discussion. Most of it is over my head atm so trying to learn as much as I can.

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 3052
   Posted 5/26/2013 4:06 PM (GMT -6)   
What is it??
Marianne

DX UC in 2005. Family history of UC.
Tried every drug-even Remicade-Tried diets-nothing worked-wanted my life back!
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC and no more drugs!! Very happy j-poucher!! :)

killcolitis
Veteran Member


Date Joined Dec 2009
Total Posts : 2396
   Posted 5/26/2013 4:14 PM (GMT -6)   
It's a genetic defect (or variation) which affects the body's ability to methylate (basically appropriately process and eliminate) chemicals (both produced by the body and those from external sources) and toxins leading to a potentially long list of issues. I guess?
I refer to pathogenkiller's post (she's the resident expert on this) http://www.healingwell.com/community/default.aspx?f=38&m=2739777

Jimbo NZ
Regular Member


Date Joined Mar 2012
Total Posts : 363
   Posted 5/26/2013 4:33 PM (GMT -6)   
Sounds like a real M#TH## F####R

Post Edited (Jimbo NZ) : 5/26/2013 3:37:30 PM (GMT-6)


killcolitis
Veteran Member


Date Joined Dec 2009
Total Posts : 2396
   Posted 5/26/2013 4:48 PM (GMT -6)   
yeah, it's aptly named. it's also not uncommon. that's why I'm wondering if anyone else has bothered being tested?

Somedude
Veteran Member


Date Joined Jul 2011
Total Posts : 3379
   Posted 5/26/2013 5:22 PM (GMT -6)   
Jimbo NZ said...
Sounds like a real M#TH## F####R


Hey-o!

that was a good one.
DX Ulcerative Colitis (pancolitis) - May 2011. (Remicade Max/6 wks, LDN, SCD, vitam.)

"Life is like a box of chocolates; you never know what you' gonna get. " by Forrest Gump

canadagal
Veteran Member


Date Joined Jan 2011
Total Posts : 596
   Posted 5/26/2013 5:39 PM (GMT -6)   
Jimbo,

oddly enough (as I rarely curse... ), that was the first thing that came to my mind when I read the tittle .... lol!
40yr old female
1st symptoms 2006, UC diagnosis 2007.
1st flare - 1 year. Solid remission with Mesalamine for 3 yrs.
2nd flare - 1 year (Jan 2010 til 2011). steroids (dependant -didn't work) Eventually 4.8g mezavant and 4g salofalk enema and sunflower/spinach got me into remission.
3rd flare - Mid-Aug 2012 – 6 good weeks in Dec/Jan but now battling round 2
Hospitalized April 16th 2013 - Mesalamine failing to work... still on 4.8g for now though, 60mg Solumedrol now droped to 40mg oral Prednisone (not responding either but need to wean) - 1st does REmicade april 26th, waiting to see if I respond.

TheAnswersYouSeek
Veteran Member


Date Joined Jan 2013
Total Posts : 2543
   Posted 5/26/2013 5:42 PM (GMT -6)   
Everyone on this forum would be very wise to educate themselves about MTHFR. The methylation cycle polymorphisms have come to light because of autism. Autistic children often have horrible gut issues too, so that is how IBD relates to what is going on in that community. Because these moms and dads will not take go take x pill and we will see you in 3 months, they are on the cutting edge of this.

The two most tested methylation cycle related polymorphisms are
MTHFR A1298C
MTHFR C677T

This could be a piece of your puzzle.

I dont think this is the root of IBD. This is a piece. No everyone with methylation cycle defects manifest in the same way.

However, I think if you have this, once you get sick its really really hard to get better and it's a key to kicking chronic disease no matter how it manifests. The beauty is that unless multiple polymorphisms have happened through your methylation cycle in CBS, COMT, MTR, etc.. you can take the right forms of B vitamins, B-12 (the "right" kind is heavily debated) and L-MethylTetraHydrofolate. You also stop eating anything fortified with folic acid. Folic acid is your enemy. Its like a log jam in the cycle.(unfortunately flour, cereal, bread, everything grainbased.. is fortified with folic acid.)

You can also do some things to support shortcuts through the cycle and to support other parts of the cycle that may be weak.. but that gets complicated. I think in the next few years we are going to see alot more literacy about epigenetics and how they are effecting us.. and best of all, how we can fix it.
Current: No Dairy, Sugar, Wheat.. Olive leaf (20% Oleuoropein), NA-Cysteine, Triphalia, METHYLATION polymorphism support, sodium butyrate, anantamul, neem, Blis K12, Probiotics, Proteolytic enzymes
My story www.healingwell.com/community/default.aspx?f=38&m=2644147

Alba29
Regular Member


Date Joined Nov 2010
Total Posts : 253
   Posted 5/26/2013 6:03 PM (GMT -6)   
What's this talk about folic acid? I was in solid remission for 3 years but battling a horrid flare currently. I haven't changed anything in my diet and medication except taking folic acid for the last 2-3 months. I was on sulfazine and thought I needed it :(
Also developed UC after moving to US - first generation immigrant UC is common. Never had folic acid fortification in my food before coming to US.

soystud
Veteran Member


Date Joined Jan 2004
Total Posts : 4655
   Posted 5/26/2013 6:41 PM (GMT -6)   
yup - me too - gutter mind !

Somedude
Veteran Member


Date Joined Jul 2011
Total Posts : 3379
   Posted 5/26/2013 7:27 PM (GMT -6)   
"The two most tested methylation cycle related polymorphisms are
MTHFR A1298C
MTHFR C677T"

Where do I go to be tested for this and is it expensive?
DX Ulcerative Colitis (pancolitis) - May 2011. (Remicade Max/6 wks, LDN, SCD, vitam.)

"Life is like a box of chocolates; you never know what you' gonna get. " by Forrest Gump

chrissy72
Regular Member


Date Joined Apr 2011
Total Posts : 188
   Posted 5/26/2013 11:35 PM (GMT -6)   
I know all about MTHFR and autism. I'm compound heterozygous(I have one copy of each kind) and so is my son who has autism. Over 60% of the general population has at least one copy of MTHFR and are totally unaware. I found out I had it because years ago my midwife tested me after I had two miscarriages. There's a higher prevalence of miscarriages and other pregnancy related issues for those that have the mutation. so many other illnesses are linked to MTHFR. Really any glitch in your methylation cycle can result in illness. Its fascinating. I wholeheartedly believe MTHFR defects are the cause of all auto immune illnesses.

Any primary care doctor can do the testing. I have CIGNA and they covered it 100%
Dx with Proctitis


Supplements:Omega 3 Fish Oil, Iron/VitC, Liquid D3, Culturelle, Folic Acid, Biotin

DMC2011
Veteran Member


Date Joined Jul 2011
Total Posts : 911
   Posted 5/27/2013 1:20 AM (GMT -6)   
I thought that bad word too! So if you test positive then what? I just recently stopped wheat and suger, I have been off dairy for quite a while. Seems to be helping but are you saying it is the folic acid in those things that make us sick if we test pos for that mother...?

killcolitis
Veteran Member


Date Joined Dec 2009
Total Posts : 2396
   Posted 5/27/2013 1:41 AM (GMT -6)   
somedude, it'll be difficult to convince your gp to test for it (at least that's been my experience) - may be easier in the US? We did it through 23andme and they test for many things not just mthfr but hundreds (thousands?) of variants. I believe they tests for five of the mthfr ones.

TheAnswersYouSeek
Veteran Member


Date Joined Jan 2013
Total Posts : 2543
   Posted 5/27/2013 10:25 AM (GMT -6)   
The thing Im still unsure of is if 23andme tests for both A1298C and C677T I know they test for others, but from what I understand these are the two most linked polymorphisms.

Alba29, folic acid is a nonuseable form of B9 for people who have MTHFR polymorphisms. Depending on how many errant genes you have, depends on just how unusable. I am also compound heterozygous, one bad copy of each of those polymorphisms. That means I my methylation cycle could be anywhere from 30-70% impeded. If you only have one bad copy, yours may only be 30% impeded. From what I understand the double wammy is having both. Ive heard that you cant be homozygous for both of those genes and live.

I cannot use folic acid in food. Instead it just floats around in my body, imparing the methylation cycle. It shows great on testing, but none of the supplemented folic acid in my blood is useable. Because it isnt useable there is a break in my methylation cycle that prevents my body from doing all the things it needs to do to have good gene expression, as well as to detoxify.

So, my body was basically a toxic waste dump with a doggie door being the only way out.

By supplementing B-12 (if you have mercury fillings or a history of mercury fillings, you may consider hydroxocobalamin or adenosylcobalamin- there is some concern and very very little actual studies about methylcobalamin being able to combine with mercury in these people, creating methyl mercury. The studies I have found showing this reaction can even occur, seem to include very high doses, and some type of perfect storm kind of conditions.. BUT, its best to be safe then sorry.) and L-methyltetrahydrofolate... You are able to provide your body with the supplies it needs to build a better and bigger door and get all the toxins that have been poisoning you and keeping your autoimmune system on edge.

Maybe your body will be better able to process enriched products later, dunno.

There are additional polymorphisms that can also be effecting folks with auto immune disease. Another one I think is important is CBS mutations. They regulate how much glutathione you make.. which are the trucks that take the waste out of the dump and all the workers helping with that process. If you react to sulfur or sulfites, this is one to explore more.

Here is a link to a page I thought had good information for UC sufferers. I like the description of MTHFR and methylation but havent figured out what to think about the contention that copper is behind UC.
www.healingwell.com/community/default.aspx?f=38&m=2739777 I think lots of heavy metals get involved in things when your detox pathways are closed and you have chronic disease and likely bacteria and viruses using metals to build biofilms.
Current: No Dairy, Sugar, Wheat.. Olive leaf (20% Oleuoropein), NA-Cysteine, Triphalia, METHYLATION polymorphism support, sodium butyrate, anantamul, neem, Blis K12, Probiotics, Proteolytic enzymes
My story www.healingwell.com/community/default.aspx?f=38&m=2644147

TheAnswersYouSeek
Veteran Member


Date Joined Jan 2013
Total Posts : 2543
   Posted 5/27/2013 10:29 AM (GMT -6)   
/customercare.23andme.com/entries/23069087-Does-the-23andMe-service-include-analysis-of-the-MTHFR-gene-

My doctor tested me through labcorp. I really think A1298C + C667T is an important thing to know about. Amy yasko has a panel that is 495!

Honestly, I havent tested my girls, Im just supplementing them because I cant make up my mind on how to spend the money. If I get yaskos test (which tests for this NOS- Nitric Oxide Synthase that I think might be interesting to know about since NOS is such a key player in IBD)

www.dramyyasko.com/resources/autism-pathways-to-recovery/chapter-2/ here is some stuff directly from Dr. Amy Yasko. Some people think Yasko is a snake oil salesman. I wouldnt buy all her supplements but I think she has alot of great information.

Post Edited (PathogenKiller) : 5/27/2013 9:35:41 AM (GMT-6)


Somedude
Veteran Member


Date Joined Jul 2011
Total Posts : 3379
   Posted 5/27/2013 11:13 AM (GMT -6)   
So pathogen, do you have the motherf.... genes? or you good?

How much is the test?
DX Ulcerative Colitis (pancolitis) - May 2011. (Remicade Max/6 wks, LDN, SCD, vitam.)

"Life is like a box of chocolates; you never know what you' gonna get. " by Forrest Gump

TheAnswersYouSeek
Veteran Member


Date Joined Jan 2013
Total Posts : 2543
   Posted 5/27/2013 12:20 PM (GMT -6)   
Somedude,
I have one of each gene.. A1298C and C677T so pretty motherf..

Mine was completely covered through labcorp.

23andme tests for C677T and a whole bunch of other stuff for 99.00. They offer 20% off each additional kit too if your whole family wants in on the action ;) Like I said, yasko's is 495. Ill see if I can find a way for people to get just 1298 and 677 cheaper.

I will say that Ive taken almost all the herbs that Im on right now at some point over the years. I know they are KEY because I wasnt taking them at bacteriacidal doses before, but I think MTHFR has been a huge piece of this final healing. I was maintaining mostly through diet. But I was eating a restricted paleo because I was reacting to eggs. and that is a really hard way to eat for me. It was not sustainable with happiness. I love food. I love travel.

18 months ago I was reacting to dairy, eggs, soy, wheat, any carb, onions, spices,gf products, tapioca, cornstarch, xantham gum, carnegeenan, beans, any fruit(sugar),any raw veggies, most cooked veggies except squash, night shades, pollen, our dog, grass, dust, cleaning chemicals.. It was super bad. Now I eat everything but dairy and wheat (im even eating small amounts of sugar), cuddle with my dog, have no allergies. My stomach issues are resolved.. my remaining issues are fatigue and joint and muscle pain.
Current: No Dairy, Sugar, Wheat.. Olive leaf (20% Oleuoropein), NA-Cysteine, Triphalia, METHYLATION polymorphism support, sodium butyrate, anantamul, neem, Blis K12, Probiotics, Proteolytic enzymes
My story www.healingwell.com/community/default.aspx?f=38&m=2644147

Somedude
Veteran Member


Date Joined Jul 2011
Total Posts : 3379
   Posted 5/27/2013 12:24 PM (GMT -6)   
So can you please post the herbs you use so I can buy them and try them out :)
DX Ulcerative Colitis (pancolitis) - May 2011. (Remicade Max/6 wks, LDN, SCD, vitam.)

"Life is like a box of chocolates; you never know what you' gonna get. " by Forrest Gump

TheAnswersYouSeek
Veteran Member


Date Joined Jan 2013
Total Posts : 2543
   Posted 5/27/2013 4:55 PM (GMT -6)   
If you dont have any mercury issues other then vaccination

Buy methylcobalamin, 5000mcg sublingual (some add lactose check ingredients) or if you have mercury issues buy hydroxocobalamin 5000mcg (think you gotta buy drops with this form)

Then buy L-MethylTetraHydrofolate, 1000mcg. Start week one taking 5000mcg B12 and 1000mcg L-MethylTetraHydroFolate. Ramp up 1000mcg of the L-MTHF each week, maxing out at 5000mcg of each product.

YOU MAY FEEL WORSE BEFORE YOU FEEL BETTER. Be prepared. when my detox pathways open I smelled, even while bathing and broke out in the worst cystic acne of my life.

You can buy whatever brand looks good to you on amazon, iherb, etc...
Current: No Dairy, Sugar, Wheat.. Olive leaf (20% Oleuoropein), NA-Cysteine, Triphalia, METHYLATION polymorphism support, sodium butyrate, anantamul, neem, Blis K12, Probiotics, Proteolytic enzymes
My story www.healingwell.com/community/default.aspx?f=38&m=2644147
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