Need clarification on 23 and me results

[Bent98]

My name is Greg, I am a 40 years old and have been dealing with some type of Idiopathic Neuropathy for the past two years. I’ve been trying a lot of different meds, vitamins, and tests to figure out what’s going on with me. Aside from a lumbar puncture that showed a slight protein elevation all other tests came up empty. Funny thing was I always felt tired my whole life, lack of energy. I had Mono and EPV between 18-28 years old. In my 30’s I exercised, ate healthy and felt great. Never got sick or felt tired. At around 35, I started to eat junk again but never got sick or felt run down It seemed eating health jumpstarted my immune system. By 36 I had LPR reflux and started on Nexium (PPI). At 38 years old is when it all happened. Started with tightness in throat for 6 months, then burning in chest for 9 months and then burning moved to my back. It sucks because my upper back, lower neck area is sensitive to touch (Allodynia) and its causes a lot of pain. I don’t have any motor or autonomic issues, strictly sensory. I decided to get a 23andme test kit and uploaded my data to http://geneticgenie.org/methylation-analysis/ and gave me the attached readings.

I am concerned about MTHFR and MTRR as it seems they are specific to Neuropathies. I am currently taking these supplements for a year now as that is what I researched may help nerves In general. I don’t take folic acid at all. I am worried I am missing a supplement or possibly taking the wrong kind. I would be grateful for any insight at all.


COM V158 +/+ Says not to take a lot of Methyl supplements
MTHFR C667T +/- and MTHFR A1298C +/-Both C667T and A1298C according to Benjamin Lynch, says its bad to have both +/- and one needs Methyl Folic Acid
MTRR A66G +/+ Recommends Methyl-B12 (Been taking 1000mg) for a year now
MAO AR297R + ???
BHMT-01 + 02 + 04 + 08 are all +/- ???
ACHY -01 + 02 +19 are all +/- ???


I know being on a PPI can reduce absorption of vitamins and minerals. I do get my Vitamin D and B levels checked every 3 months and they are good. THe information above is very conflicting as its saying I need to take methly-B12 and 5-methyl folate but COM V158++ says not to.
Other than this good forsaken burning I am in good health.

 

[caledonia]

Yes, I've heard PPI's can lower B12 in particular. Your neuropathy started sometime after starting the PPI. You have a double mutation on MTRR A66G which affects B12.

The blood tests for B12 and folic acid are more or less useless. You can have a lot of them floating around in your blood, so they show up normal or even high, but they are not being utilized by your body - evidenced by having B12 deficiency symptoms (neuropathy). Folic acid actually tests for synthetic folic acid, and since you're MTHFR C677T +/- and A1298C +/- you're going to have something like a 70% reduced ability to convert that into methyl folate.

Okay, how to detangle this mess. First get your gut working properly so you can digest supplements. That means treating the reflux without Nexium (ps. you're only supposed to be on PPI's for no more than 3-6 months - I can't believe doctors let people stay on those for years).

There is a supplement called GI Benefits by DaVinci labs that is pretty much everything including the kitchen sink for healing the gut. I taken it before and it seems helpful. You only need to take it for 2 months.

There is a book by Sherry Rogers called No More Heartburn, which I believe also covers reflux.

More later.

 

[Bent98]

I don’t have GERD. I have LPR reflux and a right vocal cord paresis. Look up post viral . I cant get off the PPI's. I tried to wean off slowly but it did go well. My throat will start to feel tight and get mucas,I will be on them for the rest of my life. I dont have any issues with my stomach or esophagus. Look up Laryngeal Sensory Neuropathy or Post Viral Vagal Neuropathy and you will see what I mean.

All that I have researched and all the people I talk to over at the Neuro talk forum that have gotten Neuropathies due to vitamin deficiencies, have burning or tingling in their arms and feet not in other places. People with central pain, fibromyalgia, RSD/CRPS can have in different limbs. I don’t have any of those disorders. I feel mine was caused by something else but I am wondering if my healing process would be slowed by my Gene defects.

With that being said, I need to work around being on the PPI.

I have enclosed a list of supplements I've been taking this past year.

 

[caledonia]

So nobody really knows what causes the LPR. Some of the stuff I was reading said that testing and treating for allergies was helpful. There are allergies like to dust, mold, cats, etc. and then there are food allergies and intolerances. Allatess is a good test for that. There are also comprehensive tests for your gut, just in case you want to rule that out.

Have you tried a good general healthy diet - no processed foods, gluten free and dairy free? Did that help at all? Are you avoiding GMOs? Gluten/celiac can cause all kinds of weird symptoms, and GMOs are just a big unknown right now.

You should also be checked for heavy metals such as lead and mercury. Do you have any mercury fillings? Any exposure to toxins through work, hobbies, etc.? These metals can cause weird neurological symptoms too.

So let's say that for now, you have to work around the PPI.

As far as diet and your SNPs, you should be avoiding all enriched foods with synthetic folic acid added (generally grains). Just check the labels. Also check your vitamin labels to make sure you're not getting any there either.

You need extra B12 because of your SNP and the PPI. The form of B12 and how you take it is very important. Are you swallowing the Jarrow pill or sucking on it until it dissolves? (taking it sublingually). For a pill taken through the stomach (even if you're not on a PPI), only 2% is absorbed. So basically useless. You have to take it either sublingually by sucking on a pill or taking drops under the tongue, or by injection. Basically any route that will bypass the stomach.

Yasko says to treat the SNPs in this order - SHMT/ACAT, CBS, MTHFR, MTRR, BHMT, MAO A, SUOX, NOS, VDR.

The first SNP you have is MTHFR. You need L-5-MTHF (Folapro) for both of your mutations. You need methylcobalamin for the MTRR mutation. But wait, you're COMT+. Too many methyl groups is a bad thing because they affect dopamine and can cause mood swings. Hydroxycobalamin looks like the better choice. Hydroxycobalamin will convert in the body to methylcobalamin and adenosylcobalamin, but it should be at a rate that you can tolerate.

How well are you tolerating the 1000mcg of methylcobalamin? Any mood swings? If you're not taking it as outlined above, then it will be doing nothing.

If you manage to get too many methyl groups, you can always take a no flush variety of niacin to soak up methyl groups. This is per Ben Lynch. Might be good to keep some on hand as you're experimenting with this stuff.

For BHMT+: Phosphatidylcholine, or Phosphatidylserine.

MAO A+: not sure

SUOX - unknown
NOS - unknown

VDR : since you're VDR Taq - and COMT +/+ this info from Heartfixer applies to you:
Highest dopamine levels
Better tolerance to toxins and microbes
Low need tolerance for dopamine precursors and methyl donors
Greatest susceptibility to mood swings
In such as individual, we would utilize the “un methylated” forms of Methyl Cycle intermediates. If an MTR/MTRR defect increases your need for methyl-B12, in this individual we would start with hydroxy-B12, to avoid ODing you with methyl groups, expecting that with enough hydroxy-B12 and free methyl groups floating around you will form up some methyl-B12, even if MTRR activity is compromised by a defect. We would not give your dopamine precursors such as quercetin or the herb macuna puriens. We would not advise a diet high in tyrosine, the amino acid precursor of dopamine. COMT (+/+) VDR Taq (-/-) individuals will be susceptible to iodine and lithium depletion as they detoxify, and we will have to watch for this and supplement accordingly.

I also saw discussions on BH4 come up a few times for your SNPs. I'm not real sure on this point, except if you end up needing to supplement with it, to leave it until you have the rest of the methylation cycle working properly.

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You could just try Rich Vank's Simplified Methylation Protocol and see where that gets you. It has hydroxycobalamin, folapro and folinic acid, phosphatidyl choline or serine, a general multivitamin. Maybe one other thing, can't remember. http://phoenixrising.me/treating-cf...e-mecfs-glutathione-and-the-methylation-cycle

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I hope this was at least somewhat helpful and not too confusing.

 

[Bent98]

Yes, I am on a healthy diet. I tried avoiding gluten. I also gotten allergy tests and I am not allergic to anything that was on the test (Which was pretty extensive) I have had extensive blue work from 3 different Neurologist, 2 rheumatologists and an infectious disease doctor. Everything was normal.

I don’t suck my B12 pill, I just chew it. I guess it doesn't help that way? If my burning its really intense and I am in a lot of pain I get really depressed and cry. I wouldn't call that abnormal or a mood swing. It’s just the fact that I am in a S**T load of pain.

Does the L-5-MTHF need to be on an empty stomach? How much do I need to take and how? . What brand of B12 and folate do you recommend? You mentioned Hydroxycobalamin. Instead of methylcobalamin. Where do I get it that’s affordable?

You mentioned in your prior post that you can’t go by the B12 levels from blood work. Can you explain why blood tests aren’t accurate? My vitamin B12 ranges from 680-1100 on the blood tests I have taken. I make sure I take them first thing in the morning a good 12-14 hours before I ate anything so I am having a hard time understanding why the aren’t accurate? My B levels did go up, once I started taking supplements.