MTHFR Gene, B vitamins & Mino

[mj47]

Hi all!

I don’t know who will want to read all about this, but I just have to share with some people who may just understand!

I just found out that my hubby’s uncle has the MTHFR gene defect that prevents him from processing folic acid into its active form. This can cause a host of issues and it can run in families. So now, we’re going to get hubby tested for it & soon.

If you’re not processsing folic acid, it can lead to high levels of homocysteine in the blood (this is what led his uncle to get the gene testing). I just found out that many people with psoriasis have high levels of homocysteine.
I have a suspicion that this gene may be a missing link to many of his issues…migraines, depression, inability to take methotrexate.
Methotrexate (MTX) is a folate inhibitor, that’s why it’s often prescribed alongside folic acid. However, if you have the MTHFR gene issue, you cannot process folic acid & you end up with a unmetabolized folic acid in your system which can cause health issues too. So, not only are you taking something that can end up making you sick because you can’t metabolize it, your health issues can be compounded because you’re taking a folate inhibitor, further depleting your system of this very essential vitamin.
My hubby did well on MTX for a while, but then he began to get so sick from it that he couldn’t even look at the pills. Seriously. I had to get them from the bottle and hand them to him so he wouldn’t even catch a glimpse of them. He would be sick for days after taking it.
Everything is making sense while reading about MTHFR.
My hubby also has a B12 deficiency that requires me to give him shots every 2 weeks. B12 is part of the, what they call methylation process in the body that processes the B vitamins & other systems. These processes control so many aspects of our bodies & minds (seratonin, dopamine, epinephrine, etc).
I’ve found a geneticist who will be checking things out for my hubby.

But, the thing that I just discovered is blowing my mind. My husband had been on minocycline for about 3 years for PsA. It had been doing a decent job, but over the last few months, he’s been getting sicker & sicker. Low grade fever, terrible fatigue, depression, increased pain, and his psoriasis flared all over. He went off the mino to see if it helped & it kind of did, but his arthritis was getting worse, so he started up on Doxy to see if he reacted to it as much. He’s not reacting as much, but still not feeling great.
Well, I just read that the tetracyclines deplete folate in the system too!! Probably not as much as MTX which is targeted at folate, which is maybe why my hubby was able to manage for 3 years on the mino. What if he has MTHFR & he’s been depleted of folate in his system & that’s why he’s had all these additional issues?? What if much of his suffering could be alleviated by simply taking the active form of folate (called L-5-MTH) to kick start his body into methylating all these vitamins properly?? 💡 💡 💡

I am just about driving myself crazy trying to learn all about this as quickly as I can. And it’s making me kind of upset that his family (all doctors) aren’t doing the same thing. I feel like I’m bothering everyone by trying to talk about all of this with them, that’s why I’m here, writing to you guys.
I think this is cutting edge stuff. I feel like it may be the missing piece of the puzzle for my hubby & I wanted to share in case any of this make sense to someone else…get reading online. There aren’t tons of clinical trials going on with MTHFR because the treatment is a vitamin. No money in it for big pharma.

I never in a million years thought that I’d be wishing for a positive result for a gene mutation.

Does anyone out there know anything about this/have a similar experience? Please share with me!!

Best,
mj

[Maz]

Hi MJ,

I don’t have anything to offer information-wise on the gene mutation, but did your husband get tested for drug-induced lupus from the minocycline? When you said he was doing better on doxy, it just popped into my head to ask, because my thoughts are that if one tetra may cause folate inhibition, then another in the same class is might have the same effect, so he wouldn’t feel any better on the doxy. This is why I’m wondering if it’s more likely DILE? DILE is pretty rare…by some stats, it only occurs in 1:10000 users, but it can and does happen and, if one has been using mino for a year or more and finding they are gradually feeling worse, then it’s just something that is worth checking to rule in/out, too.

Glad to hear he’s feeling a bit better on the doxy, MJ. Have you considered adding in a second abx? While I continue to take doxy, I have never found it to be as effective for me as mino and adding in a second and/or third abx has been necessary in my case.

[mj47]

Hey Maz!

He had blood tests done & the doc didn’t think it was DILE.
I have a feeling that maybe the doxy is just not as powerful a drug as mino & that’s why he’s not reacting as strong. All the tetras were listed as depleting folate on the list I saw. But who knows? I think once we get this testing done & meet with a knowledgeable doc, we may have some answers. Hopefully.
Hope you’re doing well!!
~mj

[Trudi]

@mj47 wrote:

Does anyone out there know anything about this/have a similar experience? Please share with me!!

Hi mj–
Back in 2008 I was tested for the MTHFR. Here were the results: Positive for 2 copies of the A1298C Mutation; homozygous for A1298C mutation but not the C677T mutation; not associated with increased risk for hyperhomocysteinemia or vascular diseases.

Don’t know if this means anything to you. I was started on 20 mg folic acid–my notes don’t say it was the L-5-MTH you mentioned; by the end of 2009 I was down to 1 mg. I’ll have to look into this some more. Thanks for bringing it up.

Wishing your husband all the best!

Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[A Friend]

Hello Mj,

I think you are so wise to continue searching and reading for information. When we are creative with our search words, sometimes we can really zero in on those “needles in the haystacks”!

If you’ve not gone to LPI Micronutrient Research Center, I encourage you to do that. I’m pasting the link below. Once you click on it, and it opens, there is a long list of topics/links that can take you to research findings in those areas.

Also, on our RBFBB, if you click on General Discussion and enter search words in the little window, you may find more information from other research that may be of help. When I first began reading the book over a year ago (which he wrote over 20 years ago), I was amazed to read about so many genetic abnormalities that could actually be positively modified by taking large doses of Vitamin C several times a day to bowel tolerance, and about other recommended combinations. (You probably know already that mankind lost its ability to synthesize Vitamin C eons ago, but it is very much needed, in larger amounts than we usually consume, and can have some amazing results. I’ve read/learned from the research in the book that there are many genetic diagnoses that have been positively modified.

The book has been updated in the last several years and republished, with annotation markings by those things that have had even more research findings since Dr. Pauling’s death; and these findings are described in a section right before the index in the back of the book. You should learn much about this ongoing research in this LPI Micronutrient Research Center link. http://lpi.oregonstate.edu/infocenter/paulingrec.html

Good luck with your research,
AF

[Suzanne]

mj47,

Thank you for sharing this. The MTHFR gene has been a hot topic at times on the some of the JRA parents’ boards because some children with it have been harmed by mtx. It would seem like a no-brainer to screen for it before starting them on it, but there seems to be resistance to that for some reason.

I think this a topic that we will continue to hear more about.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[A Friend]

@Suzanne wrote:

mj47,

Thank you for sharing this. The MTHFR gene has been a hot topic at times on the some of the JRA parents’ boards because some children with it have been harmed by mtx. It would seem like a no-brainer to screen for it before starting them on it, but there seems to be resistance to that for some reason.

I think this a topic that we will continue to hear more about.

Suzanne,
When you click on the link to LPI Nutrient Center
[ http://lpi.oregonstate.edu/infocenter/paulingrec.html ], there is a little search window at the bottom of the list of topics that show up on the left side bottom of the screen. If you keyboard these words into the little window — b vitamins+genetics — many links/topics show up that may more immediately give you helpful information. You might also think of other words to add to this search to narrow it down, i.e. “supplements+genetics”, etc.
AF

[mj47]

@Trudi wrote:

Positive for 2 copies of the A1298C Mutation; homozygous for A1298C mutation but not the C677T mutation; not associated with increased risk for hyperhomocysteinemia or vascular diseases.

Don’t know if this means anything to you. I was started on 20 mg folic acid–my notes don’t say it was the L-5-MTH you mentioned; by the end of 2009 I was down to 1 mg. I’ll have to look into this some more. Thanks for bringing it up.

Hi Trudi!

It looks like you have the double mutation…and from what I understand, the lack of high homocysteine levels equals no increased risk for vascular diseases. However, it definitely means that you don’t methylate folate and you need supplementation.
From what I’ve read, folic acid is definitely the wrong thing to supplement with because it is a man made synthetic version of folate (what’s found in green leafy veggies). In a person w/o MTHFR issues, they can methylate the folic acid (or the folate ingested in food), but someone with MTHFR cannot. So your body doesn’t process the folic acid and you can get a build up of it in your system which can cause problems too.
It seems best to supplement with the bio-available l-methylfolate because it’s the version that comes from a body processing the folic acid/folate…essentially, you’re bypassing the step that your body can’t do because of the MTHFR genetic mutation.
I’m curious if you had blood work done to show if your folate levels were better, or if you felt better or worse with the folic acid supplementation.

Also, I noticed in your signature that you mentioned that quinolone drugs made you feel bad. I wonder if perhaps it’s because those drugs are known to deplete your body of folate. See this site: http://www.umm.edu/altmed/articles/vitamin-b9-000722.htm
Maybe they affect your folate levels really bad & you suffer because of it. Just a thought!
Best to you,
mj

[Trudi]

@mj47 wrote:

I’m curious if you had blood work done to show if your folate levels were better, or if you felt better or worse with the folic acid supplementation.

Also, I noticed in your signature that you mentioned that quinolone drugs made you feel bad. I wonder if perhaps it’s because those drugs are known to deplete your body of folate. See this site: http://www.umm.edu/altmed/articles/vitamin-b9-000722.htm Maybe they affect your folate levels really bad & you suffer because of it. Just a thought!

Hi Mj–
Number one, I am so glad you posted this thread! I really paid no more mind to my mutations until I read your post. Since then I’ve done pretty much nothing but. I double checked my folic acid supplementation and the doctor started me out at 20 mg and increased it to 40 mg :shock:. I cannot say for sure if it was the folic acid since my doctor started me on so much, but my toes started to get numb and eventually they felt like cardboard. To this day they are still somewhat numb 😥 .Eventually he did start me on the 5-MTHF from Thorne, but I ended up stopping.

I just finished listening to a Dr. Ben Lynch (bet you recognize his name): http://www.youtube.com/watch?v=QRHif2aVPvw Lots of good information. I need to analyze it all before I start anything. He definitely cautions to avoid supplements if they don’t agree with you. I have found that less is much better for me. In the meantime I am going to eat high folate foods.

Thank you for posting the list of drugs which deplete the body of folate. I am taking 50 mgs of Indomethacin. Just haven’t found anything to replace it at the moment. I was actually taking the herbal equivalent of the quinolones, Cat’s Claw, so don’t know if it depletes the folate. I suffered tendon damage and don’t know if there is a relation. However, I can tell you that I did awful on Doxycycline. Since everything in the body is connected, I’m guessing there is something there.

Thanks again for bringing this up. If you come up with anything that you think might be of interest to me, please post it here. Since this mutation deals a whole lot with toxicity and detoxing it is worthwhile to everyone here to read.

Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Anonymous]

Hi there,
Just reading your post and wanted to suggest reading the h-factor. It discusses homocysteine levels and how it is a direct relation to diseases. I have psoriasis and reading this book it helps you take a look at decreasing the inflammation in your body. I was recently diagnosed with MTHFR compound heterozygous mutation A1298C and C677T.

I decided to work on lowering my homocysteine levels. I am GF, DF, SY and have a very clean diet. I found the book the H-factor which helped me understand how high homocysteine levels mean high inflammation and the diseases they cause, how to lower with supplements. As I already know my high homocysteine is shown thru inflammation in my skin, psoriasis. Overall, my skin (psoriasis) is much better because my homocysteine levels were rechecked and the level is now 9.2. However, I think I am still missing a piece to the puzzle. The main supplements I read to lower your homocysteine levels are the following: 500 mg of TMG, 800 mcg of folic acid, 1000 mcg of vitamin B12, 250 mg of choline, 250 mg of inositol, 30 mg of zinc, and 100 mg of vitamin B6. I am taking all of these supplements plus Metanx, 5MTHF, methy b-12 shots, gluatthione. As i mentioned in the beginning my levels were 13.8 and have dropped to 9.2.

Maybe this will help with your piece of the puzzle.

Layla Bell

[Valsmum]

The gene mutation info is very interesting, I never heard of it until now. Hope your husband gets well soon.

My bro with psoriatic arthritis has a brother and mother with hemotomocrosis , I wonder if he should look into getting his gene checked like your husband.

[laurawm]

I have the double MTHFR mutation (both C677T and A1298C). It’s interesting to me that it keeps the body from assimilating folate – which is needed for both bacteria/fungus replication as well as immune system cell replication and may be a primary way that both methotrexate and sulfasalazine are effective in treating RA – working as both antibiotics and immunosuppressants through anti-folate mechanisms. With the gene mutation, I wonder if it got “turned on” as I became sick and my own body began trying to do it’s own anti-folate protective mechanisms. I’ve found the following website very interesting in helping me understand this gene mutation and also have found that this doctor’s recommendations are often similar to many diet and detox treatments discussed on the forum…

http://mthfr.net/

Laura

[A Friend]

@laurawm wrote:

I have the double MTHFR mutation (both C677T and A1298C). It’s interesting to me that it keeps the body from assimilating folate – which is needed for both bacteria/fungus replication as well as immune system cell replication and may be a primary way that both methotrexate and sulfasalazine are effective in treating RA – working as both antibiotics and immunosuppressants through anti-folate mechanisms. With the gene mutation, I wonder if it got “turned on” as I became sick and my own body began trying to do it’s own anti-folate protective mechanisms. I’ve found the following website very interesting in helping me understand this gene mutation and also have found that this doctor’s recommendations are often similar to many diet and detox treatments discussed on the forum…
http://mthfr.net/

Laura

I have been finding much these days regarding genes and reactions/diagnoses such as these that have been shown to be turned around and/or helped by certain supplements of needed vitamins. For example, when many have had psoriasis and related diagnoses, this can be tied to fungal/yeast overgrowth that affects our bodies’ ability to make B vitamins, causing the overgrowth, and also affects/changes our genes.

Since there is little money to be made recommending patients use Vitamin B supplements (a complete B supplement is said to be needed) plus certain specific B vitamins added for specific needs. If/when our good gut flora can be “re-forested” and the yeast/fungal overgrowth addressed and cleared, this can have a positive effect not only on our symptoms, but to our genes as well. [I’m paraphrasing all of this, but probably have all of it in Word documents saved on my PC. Also, Maz has recently shared information on Research that has mentioned certain aspects of this. Another recent instance is of a local class member whose husband has been diagnosed with a vision problem (sight threatening) that has it roots in a similar diagnosis. The toxins from many medicines, etc. create toxins that often are excreted through our eyes…. is this scary or what???

AF

[cavalier]

I have considered getting tested for this a few yr’s ago but never did. However, in light of the fact that I seem to have my detox pathways somewhat blocked due to the heavy metals I have, and I know I have had trouble with Candida as well as I have high clot risk inflammation factors including stroke & HA as well as autoimmune etc – I think I should get tested. My Mom died from a clot at my age now, so perhaps I should as this could help if I do have this with being able to detox better.
The info people have posted was helpful.

Jill SD Lyme CPn Candida Poss Bart & Heavy Metals

[cavalier]

My blood was taken today to get tested for the MTHFR gene the results may tell us if this is why i have trouble detoxing from metals. One thing leads to another – I have other markers to make me suspect I could have this genetic defect & so I brought them into my NP today who agrees with me I do have some of the markers & symptoms. So will see if ,& if so then I need to do some things to help. One is a high B12 level – this & High MCH & MCV which you would think high B12 is OK but according to Dr Lynch this could well mean I cant convert the B12 to the methyl form. & the other 2 indicate folate deficiency or high metals or sluggish metabolism.

My insurance should pay for the Spectracell lab test to find this out they will do the filing with insurance for me & if my insur. does not pay they will write off the difference only cost me my co-pay of 35 bucks to find out. Spectra cell is considered to be the best lab for this as they test for both mutations not just one.

I was told by my doc to avoid Vit C & Magnesium for now as it makes the Lead Toxic & makes the body hold onto Lead.

I will have the results in about 2 wk’s. – Jill

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