dbpei
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posted
I just learned that I tested positive for MTHFR mutation. I don't have the details of which type of mutation I have. But I am so confused!
I got on the MTHFR Mutation website and watched the long video explaining this. I have been taking cholestyramine for the past 2 months and learned that you should NOT take this if you have MTHFR mutation.
Also learned that you should not take anti-malarials, which I took for 6 months. I think cryptolepis might be an antimalarial and I have been taking that for the last 3 weeks.
My LLMD just prescribed folic acid for me when he learned that my homocysteine levels were high. According to the MTHFR website, that is the WORST thing I could take.
Have any of you learned that you had this gene and modified your diet/supplements/meds to find improvement in your symptoms? I am pretty sure I have a problem with gene 1298 because my dopamine and serotonin levels were very high when tested. This defect also causes nerve damage and neurological problems according to what I have read.
Any help in understanding all of this would be appreciated. Do naturopathic doctors understand this more than more traditional docs?
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kgg
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It is confusing, it's organic chemistry! But the most important thing is just because we have some of these mutations doesn't mean they ALL manifest in us.
Who ran the MTHFR test on you? That would be the person to help. Or consider working with one of the specialist.
And a heads up for if/when you start these supplements. Start VERY low, go slow. They can cause a detox that is as bad as Lyme symptoms or a herxheimer reaction. By low I mean that some people start with sprinkles of a capsule or an 1/8 of a tablet.
Posts: 1845 | From Maine | Registered: Jun 2004
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dbpei
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posted
It was a lyme literate neurologist that I went to see as a consult who ran this test. I have a local LLNP that I see. The reason he ran the test was because other blood work reflected high homocysteine levels.
He prescribed folic acid before testing me for MTHFR. Now I read that is the worst thing I could be taking.
I also just read a thread warning us all to be careful of some of the opportunists out there who are not medical doctors and profess to be experts on this. I guess that video I watched is an example - perhaps I shouldn't take as Gospel on this stuff...
I will probably continue my CSM until I speak to my LLNP on this. She does seem knowledgeable about MTHFR and told me that it is very common in lyme patients. I was hoping it might be a clue as to why my most nagging symptoms are still with me...
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kgg
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Lots of people don't tolerate CSM. But if you are doing OK on it, I agree, stay on it until you speak to her.
I don't recall reading that we should not take anti-malarials.
The advise to take the folic acid, if he is the one that ran the test, is puzzle-ling to me too. Except that the methylation cycle is not the only way our bodies process things. I would think it might warrant a phone call to him to ask about this.
Best, Karen
Posts: 1845 | From Maine | Registered: Jun 2004
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Razzle
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Folic Acid is bad for MTHFR, because those with the MTHFR mutations can't convert the Folic Acid to the useful/active form.
To get around this, one should instead take the active form of Folate, called 5-MTHF, or 5-methyltetrahydrofolate. Methylfolate is another name for the same thing. Thorne Research makes a 1mg & 5mg capsule of the 5-MTHF. Other companies do, as well.
Very densely packed webpage, but excellent info and is from a Cardiologist. He has helped many patients with this.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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dbpei
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Thanks, Razzle. I have started to look at that website and will try to read it a few times to let it sink in. I feel like you need a master's degree in this stuff to understand it!
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posted
Why should you not take antimalarials if you have MTHFR?
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dbpei
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Annelet, I have no idea why. But anti-malarials were listed as things to avoid if you have this mutation on http://mthfr.net/. I'm not sure I believe this because I haven't seen it anywhere else.
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Razzle
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quote:Originally posted by dbpei: Thanks, Razzle. I have started to look at that website and will try to read it a few times to let it sink in. I feel like you need a master's degree in this stuff to understand it!
Yeah... I've been reading that site over and over since 2004 or so, and still find things on there I didn't "get" before...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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posted
Malarone and Septra (antimalarials) cut off Folic acid to Babesia that's how it kills it. Maybe that why they say not to take them? Just guessing.
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Razzle
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RC1,
Yes, that would make sense...thanks!
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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Rumigirl
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Uh, does anyone know for sure whether it's true that you shouldn't take anti-malarials if you have MTHFR?? If so, what the heck should one do for Babesia??!!
I need to know before I go to my LLMD today, Monday, as I doubt he knows the intricacies of this, and I am battling Babs hard. I have it badly.
Posts: 3792 | From around | Registered: Mar 2008
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dbpei
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There is a LLMD who actually started a site on FaceBook, who has the MTHFR gene mutation. When I posted a question about this, she was perplexed and said she had never heard or read anything about this contra-indication. She is actually being treated herself for babesiosis and said she will continue to take anti-malarials.
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kgg
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posted
Yes, I would/will continue to take anti-malarials. Remember this is just one aspect our incredible bodies. I wish I could find the chart that shows the methylation cycle in relation to the other cycles that function in us. It is a dot on the map.
I think of the methylation treatment as a clean up of sorts not first line defense.
Posts: 1845 | From Maine | Registered: Jun 2004
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posted
It depends on which gene mutation of MTHFR you have. I am heterogzous and Deplin which is folinic acid helps alot. I also do B12 injections daily.
Deplin is a food grade supplement that is easily absorbed.
Never heard that about anti malarials. I have Babesia and have taken mepron and am now on malarone. I also take arteminisin and cryptolepsis.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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Rumigirl
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faithful, do you take methylcobalamin B12 /B] shots[? That's what I have always done before. But with MTHFR, I thought that we should use hydroxycobalamin B12. I guess it depends on what variation on MTHFR one has.
[B]Can someone please explain this part? Or direct me to where to figure it out?
I know that I have 2 methylation pathway blockages. I would really have to dig to find the testing to see if the B12 was part of it. Probably was, but not sure.
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Razzle
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Actually, it depends on your ComT status and other mutations in the methylation cycle.
So the safest form to take, that you won't have to be concerned about causing too many methyl groups (i.e., methyl trapping) is to take the hydroxycobolamin form of B12.
As long as you are getting the methyl-folate (5-MTHF), you'll be getting enough methyl groups but not too many.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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quote:Originally posted by Rumigirl: faithful, do you take methylcobalamin B12 /B] shots[? That's what I have always done before. But with MTHFR, I thought that we should use hydroxycobalamin B12. I guess it depends on what variation on MTHFR one has.
[B]Can someone please explain this part? Or direct me to where to figure it out?
I know that I have 2 methylation pathway blockages. I would really have to dig to find the testing to see if the B12 was part of it. Probably was, but not sure.
Hydroxycobalamin has to be converted to methylcobalamin in the body. If you are having methlyation issues your body can't convert.
I use methylcobalim for my injections. It is directly absorbed.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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lax mom
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posted
What test did you guys have?
I only had the basic MTHFR lab drawn. I was heterozygous for A1298C. I don't think that's telling me the whole story.
Is 23 and me enough? or is it necessary to have the full Yasko testing done?
posted
I just did the MTHFR lab test but plan to do 23 and me at some point.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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CD57
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posted
23andme is great, but then you have to have someone interpret it.
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Razzle
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23andme does not test all of the methylation genes, so if methylation is what you're concerned about, then I'd go with the Yasko test.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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lax mom
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posted
23andme is $99 (purchase more than one and save 20% off of each add'l kit)...was it always this low (compared to Yasko's test)? I thought it was in the hundreds?
Rumigirl
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posted
What is the link or the info on Yasko's tests?
Can these methylation defects change for the better sometimes, as one gets better? That is, I gather that sometimes they are genetic glitches, and sometimes from the infections themselves.
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Razzle
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Yes, the infections themselves do play a role in interfering with methylation.
But if one has the mutations, that means they need to stay on the nutritional support for life, vs. only during times of stress, infections, etc.
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