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MTHFR Positive! Now what?

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Posted 6/24/2014 6:30 AM (GMT -7)
So my naturopath suggested I get this test done as I'm still unwell. It came back positive for ONE COPY C677T MUTATION AND ONE COPY OF THE A1298C MUTATION.

Now what? 23andme? I'm seeing my LLMD again and have been back on abx again for 3 weeks. Not feeling the greatest. Now I'm reading that if you have these mutations that abx are not good? My LLMD does test for this so will be calling him today to discuss next steps but wanted to see what the omniscient folks on here have to say.

Thanks!
Posted 6/24/2014 6:51 AM (GMT -7)
Well one copy really isn't that bad. It means you are heterozygous and that you have one functioning gene. MTHFR gene mutation effects are generally corrected by taking a supplement though I don't know which ones. I would talk to your ND about it.

We have some members that are really well versed in MTHFR so hopefully they will see this.
Posted 6/24/2014 6:53 AM (GMT -7)
Actually I believe I am Homozygous. See below unless I'm reading this wrong.


Homozygous: means you have both copies of either the 677 mutation, or the 1298 mutation, one from from each parent.
Heterozygous: means you have one copy of either the 677 mutation, or the 1298 mutation, plus a normal one from the other parent.
Compound Heterozygous: means you have one copy of the 677 mutation from one parent and one copy of the 1298 mutation from the other parent.
Triple homozygous mutations (more rare): an example would be one C677T, one A1298C, and a P39P or R594Q, for example.
Posted 6/24/2014 8:08 AM (GMT -7)
If you are homozygous then you would have two copies of the gene mutation

Regardless, treatment would be the same, you just might not need as high of a supplementation.
Posted 6/24/2014 8:14 AM (GMT -7)
Gotcha. Thanks.
Posted 6/24/2014 8:19 AM (GMT -7)
You are compound heterozygous. You have one copy of each gene mutation. I have this as well.

Typically the protocol is to avoid folic acid and to take 5-MTHF - methyltetrahydrofolate (prescription equivalent is Deplin, however it is VERY expensive even with insurance) and Methyl B-12.

Post Edited (Mischa252) : 6/27/2014 7:26:59 PM (GMT-6)

Posted 6/24/2014 8:36 AM (GMT -7)
Do you take while on abx? Just spoke to my LLMD and it sounds like he's going to start me on something for the MTHFR when I see him next Wednesday, but also keep me on the abx. But there are thse who say you won't be able to methylate as well on meds.

Very confusing. Especially for this Lyme-brain.

How are you doing on it?
Posted 6/24/2014 8:45 AM (GMT -7)
I do. My LLMD said that in order to detox successfully, this is crucial. I do think it's working, as I have not had any severe herxing. I truly believe that if I didn't address the MTHFR mutations, it would have been worse. I started this protocol before I started the antibiotics, although I was on A-L complex at the time.

You have to start slow on the 5-MTHF, as this can also produce some uncomfortable reactions. I got extreme dizziness and increased heart rate the first day, but it didn't last long.

I'm sure your doctor will most likely test your homocysteine, b12 and c-reactive protein levels. These are all correlated to the mutation. If your homocysteine and c-reactive protein levels are high and b12 is low, you definitely want to get further blood tests after starting the treatment to ensure these levels normalize.

Post Edited (Mischa252) : 6/27/2014 7:25:28 PM (GMT-6)

Posted 6/24/2014 9:06 AM (GMT -7)
I have the same mutations as you. My LLND has me on Thorne Methyl-Gaurd Plus and Thorne Basic Nutrents 2/day. I think the most important thing while on abx/herb is to make detox number one. I do daily epsom salt baths, drink water, take charcoal, chlorella. Please keep us posted as to how your Doctor is treating this. I'm always wondering and learning:)
Posted 6/25/2014 6:11 AM (GMT -7)
bump
Posted 6/25/2014 3:57 PM (GMT -7)
What is this test exactly? MTHFR????
Posted 6/26/2014 8:43 PM (GMT -7)

opugirl said...
If you are homozygous then you would have two copies of the gene mutation

Regardless, treatment would be the same, you just might not need as high of a supplementation.


I need to hone in on this post, I've not been this board in a long time, but came to see this post, but saw your reply and need to say that treatment is not the same. Very misleading.

Treating the different snp's, mutations, enzymes and pt's symptoms will all very much result in different treatments.

I've very knowledgeable about MTHFR since I've done most of Dr Lynch's seminars and I am also April's LLNP (Lyme Naturopath).


My suggested for EVERYONE with Lyme is; get tested for MTHFR if you're not healing and find a good practitioner to help out and also, do Dr Lynch's seminar. The info is invaluable.
Posted 6/26/2014 8:45 PM (GMT -7)

Mischa252 said...
I do. My LLMD said that in order to detox successfully, this is crucial. I do think it's working, as I have not had any severe herxing. I truly believe that if I didn't address the MTHFR mutations, it would have been worse. I started this protocol before I started the antibiotics, although I was on A-L complex at the time.

You have to start slow on the 5-MTHR, as this can also produce some uncomfortable reactions. I got extreme dizziness and increased heart rate the first day, but it didn't last long.

I'm sure your doctor will most likely test your homocysteine, b12 and c-reactive protein levels. These are all correlated to the mutation. If your homocysteine and c-reactive protein levels are high and b12 is low, you definitely want to get further blood tests after starting the treatment to ensure these levels normalize.



Not everyone can start on 5-MTHFR. If someone his high in NOS, this will actually make them worse.
Posted 6/27/2014 1:16 PM (GMT -7)
My LLND has never mentioned this test. I've heard of 5-MTHFR from reading here and other Lyme disease forums. Very intriguing.
=]chloe
Posted 6/27/2014 6:38 PM (GMT -7)
Peacesoul, just curious...what NOS are you referring to ? My understanding of NOS is that it's a broad based diagnostic category. Just interested to see how it relates to genetic mutations
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