Pernicious Anaemia Society
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MTHFR and EBV results

Good Morning,

It wasn't difficult to convince my Dr. to continue shots weekly instead of monthly when he witnessed my deteriorating condition. The tiredness would not go away and at times was fearful of driving if you recall in my last post. Along with a high homocysteine on previous lab he decided to do some more blood work.

I got the results in my in-box as I do 2 days after my Dr. gets them. Unfortunately he has not seen them yet and his office is closed this week. Hurricane Matthew did a number on us over here in Daytona over the weekend. We just got power a few nights ago but it damaged his medical plaza and still no power over there. No shot for me this week.

But now I am really confused. Seems I have a triple whammy? Do I need to be taking different b12 and folate as in methyl or what is the difference? Or not at all now that my levels are SO high. Or maybe my tiredness is related to the EBV/mono?

Homocysteine 20.5 down from 26.7 (added b6 after this)

MTHFR: POSITIVE FOR TWO COPIES OF THE C677T VARIANT. This individual is homozygous for the C677T

variant.

B12: 1522

Folate: 24 (wow up from 1.2)

EBV NUCLEAR AG (EBNA) AB (IGG): >5.0

reference range anything >1.10 is positive

Thank you all so much for your input I so appreciate it!

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How are you feeling? Put aside the bloodwork for a mo, are you feeling better?

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In certain ways I am such as the numbness has decreased significantly. The leg cramping is not as significant but still prominent in the right calf. But overall the overwhelming tiredness is still so much there. It is not satisfied with sleep however it improves slightly after each injection for a few days and then deteriorates. Really beginning to wonder if it's in my head as I had often wondered years prior to the dx.

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Stick with whichever B12 you are taking right now (I'm guessing cyanocobalamin).

Being homozygous for the C677>T mutation (like me) you may find it helpful to supplement with methylfolate instead of folic acid (like me). 800 ug a day will be enough. Switching from folic acid to methylfolate (aka metafolin) may do some good and won't do any harm apart from being more expensive.

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Thank you fbirder. I still just don't understand why I would even need any more folate if my level is 24. Seems awful high to me. I just keep getting hit with all this stuff and it just seems impossible for one person to have so many things going on. Oh boy I just want to not be so tired!

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Hi mislauren,

I think the explanation, and please correct me if I'm not understanding correctly, fbirder!, is that you might have a methylation problem b/c of the MTHFR issue. Which makes it hard for your body to use the b12 to the best benefit. If you add methylfolate, even just 400mcgs a day, it will help your body to methylate and process the Cyanocobalamin. Of course, we are assuming you are on Cyano, please correct if we are mistaken.

Hope this makes sense! :-)

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Yup, that's about right. Except that it doesn't matter what sort of B12 is taken because the methylation happens to cob(II)alamin - which is B12 with the top bit (cyano, hydroxo, methyl, adenosyl) removed.

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Thanks fbirder! I think I'm slowly getting it! :-)

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Yes it is Cyano and thank you!

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You are very welcome! Let us know if the addition of methyl folate helps. I sincerely hope so! :-)

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Will do!

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What is commonly known as 'folate' is actually several different chemicals - folic acid, dihydrofolate, tetrahydrofolate, methylenetetrahydrofolate and methyltetrahydrofolate.

In the normal body folate is absorbed from the gut and is processed in the body. Let's start with folic acid - that gets converted to dihydrofolate, then tetrahydrofolate, which becomes methylenetetrahydrofolate.

Then the MTHFR enzyme converts methylenetetrahydrofolate to methyltetrahydrofolate (MTHF), which transfers its methyl group to cob(II)alamin (from B12) to convert it into methylcobalamin. In the process the tetrahydrofolate is reformed and goes back into the loop.

Here's a diagram that summarises the main points. frankhollis.com/temp/MTHFR.jpg

The test that measures your folate levels measures all of these chemicals. If your MTHFR enzyme isn't as efficient as it should be then the other types can build up to a good concentration, while the concentration of the useful variant - MTHF - remains sub-par.

If you swap your folic acid supplement for a methylfolate (aka MTHF) supplement then your total folate levels will stay the same but the levels of the important folate will increase, giving the body enough to do all the methylation of B12 it needs to do.

It's a bit like a sandwich making factory that uses unsliced loaves. If the loaf slicer (MTHFR) is a lazy person then the rate of sandwich (methylcobalamin) production will slow down. But the amount of total bread (folate) in the factory will be high.

Now you could buy in ready-made sandwiches (supplement with methylcobalamin) but it would be cheaper and far more sensible to buy in sliced loaves (methylfolate). The amount of bread in the factory would be the same, but sandwich production would go back to normal levels.

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Oh thank you I love your analogy! I understand so much more now :)

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Great explanation! I think I'm getting it a little faster now! :-)

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That's one of the most helpful analogies I'ves read!

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The EBV test may not indicate that you are currently experiencing symptoms from the virus. Once you've had EBV you will continue to test positive for antibodies to it for the rest of your life. Just like a cold virus, your body fights it off and continues to circulate antibodies to that particular virus (you don't catch the same exact cold over and over again). It takes a few tests to determine if you're currently actively fighting EBV:

EBV VCA Ab, IgG

EBV VCA Ab, IgM

EBV EA Ab, IgG

EBV NA Ab, IgG

Fatigue is a dominant symptom of EBV. Unfortunately there's not really a treatment that will help clear the virus from your system faster. The recommendation is just getting extra rest.

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I imagine next time I see the Dr. he will order more tests. Seems like I live at the lab these days. I just do not ever recall being this tired or having extreme fatigue at any other point in my life as I have in the past 6 months. We'll see as time goes by. Thank you for your reply.

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I really hope you feel better soon! Keep us posted please.

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@mislauren how are u and the EBV these days ? My results show very high AB levels and I’m Hashimotos and also PD stage 1. Any tips ?

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I seem to be holding my own these days. Went on 6 months of Ayclovir to suppress the immune system which I must say really did help. I haven't had the extreme fatigue like I used to. I imagine it's a combo of everything though. I am still having B12 jabs twice a month plus menthyl folate .

I also added Glycemic Guard from Life Extensions which is helping my post meal blood sugars.

Also recently added their Comfort Max for chronic pain which so far looks promising. It helps to boost our body's own production of endocannibinoids.

Is PD Parkinsons Disease? Forgive me I don't know! If so you may want to check out this article on Comfort Max.

lifeextension.com/Magazine/...

(I have no interest in this company other than a happy consumer!)

I wish I had more to offer you I hope you feel better soon!

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Thanks so much and oops yes on PD!

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