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Confused about 23andme results and methylation

Messages
26
Location
Southern California
When they started peeling again had you stopped the methylcobalamin injections? Or maybe you started a new batch? I honestly don't know if the claims about injectable methylcobalamin being of inconsistent quality are accurate, but if the peeling started up again even though you were taking the methylcobalamin that's one possibility. Since I don't know much about the issue of skin peeling there could be several other possible explanations for why your condition resumed. I just wanted to mention it as one possibility.

They stopped peeling a week or two after I started methylcobalamine shots, and then started peeling again a few weeks after that, and I was still taking the shots. I think it may have something to do with how I...what do you call it, methylate?
 

Lotus97

Senior Member
Messages
2,041
Location
United States
They stopped peeling a week or two after I started methylcobalamine shots, and then started peeling again a few weeks after that, and I was still taking the shots. I think it may have something to do with how I...what do you call it, methylate?

So you think methylation will help your condition? I'm not sure, but it might be possible that methylcobalamin by itself was initially able to start methylation, but now you need methylfolate to keep things going. I hope methylation does help your condition.
 
Messages
26
Location
Southern California
So you think methylation will help your condition? I'm not sure, but it might be possible that methylcobalamin by itself was initially able to start methylation, but now you need methylfolate to keep things going. I hope methylation does help your condition.

I am not sure whether it is methylation, or what it is...but maybe. And, I really want to get past this air hunger once and for all. It's been a long time!
 

Lotus97

Senior Member
Messages
2,041
Location
United States
I am not sure whether it is methylation, or what it is...but maybe. And, I really want to get past this air hunger once and for all. It's been a long time!

I forgot to mention. I experience air hunger/shortness of breath when I'm exposed to certain smells (ie MCS). I've heard of some people with MCS (multiple chemical sensitivity) getting relief of their symptoms from nebulized glutathione so maybe methylation will help that too since methylation also raises glutathione.
 

Lotus97

Senior Member
Messages
2,041
Location
United States
pamrr
I mentioned earlier in this thread how there's a lot more to CFS/ME than just fatigue. The thread I linked to has an explanation by Rich how Lyme fits in with CFS/ME. Also, Marco wrote a series of articles about CFS/ME being a neuroinflammatory condition. This is the fourth article, but there's links to the other 3 articles at the end of the article:
http://www.cortjohnson.org/blog/201...akes-on-symptoms-of-chronic-fatigue-syndrome/
 
Messages
26
Location
Southern California
pamrr
I mentioned earlier in this thread how there's a lot more to CFS/ME than just fatigue. The thread I linked to has an explanation by Rich how Lyme fits in with CFS/ME. Also, Marco wrote a series of articles about CFS/ME being a neuroinflammatory condition. This is the fourth article, but there's links to the other 3 articles at the end of the article:
http://www.cortjohnson.org/blog/201...akes-on-symptoms-of-chronic-fatigue-syndrome/

Thanks, Lotus, for your patience and understanding.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
Hi all,

My personal intro is at the end of this post. I did the 23andme test and ran it through genetic genie with these results:

homozygous:
COMT V158M
COMT H62H
MTRR A66G

heterozygous:
MTHFR A1298C
COMT P199P
VDR Bsm
VDR Taq
MAO-A R297R

I am not diagnosed with ME/CF, but my primary symptom of air hunger has driven me to B12 deficiency and chronic fatigue forums through the years. I was finally diagnosed with Lyme and Babesia -- treatment for that eventually helped my air hunger and completely resolved my fatigue. But the air hunger remains, now that I am off ABX...and recently got a little worse. I am exercising again, which is increasing it periodically.

Anyway, my questions: Can these sets of genetic markers do anything to cause air hunger? (I do supplement B12, methyl shots) And, I am really not feeling I totally understand the genetic genie interpretation of these results. And finally, could any of this affect a my VIP (Vasoactive intestinal peptide)? I know this last question is way out there.

My lyme doctor happens to be a DANS autism doctor who started noticing that a significant number of her autism kids also had lyme. Interesting.

Also, any info on how I should be supplementing anyone cares to pass on, great! I won't be seeing my LLMD until July.

Pam
_____

My name is Pam, and I started this torturous journey in the early 2000s when I started having constant air hunger. I was active in sports at that time. Through my research, I came up with several possible causes and ran through them all, including B12 deficiency. That's when I came across the WrongDiagnosis thread about B12, and Freddd. I thought I resolved any B12 issues, thyroid, and moved on to Lyme disease and babesia. By that time, I was exhausted all the time. I was treated with ABX for nearly two years, as well as medical detox. Everything improved or went away, however the air hunger remains. I had improved but plateaued on babesia treatment.

Pam

Pam,

your 'air hunger' might well be your body's way of telling you that you lack energy (the body's primary method of generating energy needs oxygen. This page has LOTS of info on remedies for ATP generation.

I am assuming that you have ruled out mild (sub clinical) hypothryoidism which causes that strenuous breathing. Be ware that both form thryoid are relevant here. T4 actively affects the operation of MTHFR (and thus Methylation), T3 stimulates ATP generation. Have you had a FULL thryoid profile done that shows how well you are converting T4 to T3?

Realise too that problems with the Electron Transport Chain in ME could mean that low ATP affects creates low phosphorylation of B-Vitamins. Low phosphorylation in turn can lower Methylation despite normal 23andMe results.

Brian
 

Leopardtail

Senior Member
Messages
1,151
Location
England
Thanks. I take a lot of Mg already, and I will get right on the hydrox.
Pam what FORM of magnesium are you taking?
Be ware also that TOO MUCH Mg can create Parkinson's symptoms!
It might be worth you having a red cells Mg test that will indicate whether you Mg is getting where it needs to be, but also that its not too high.
 
Messages
26
Location
Southern California
Hi Brian,

Thanks for responding. Yes I've been treating hypothyroid for many years. I think it is relatively well controlled.

Magnesium Citrate, 175 mg and 200 - 600 elemental magnesium daily.

I will study the endfatigue link you have provided.

In terms of fatigue and low ATP, I am back at riding my bike (17 - 24 miles per ride). The air hunger doesn't seem to impact my activity noticeably. I will look at ATP.

Thanks again for responding, especially so many months after I posted my questions.

Pam

Pam,

your 'air hunger' might well be your body's way of telling you that you lack energy (the body's primary method of generating energy needs oxygen. This page has LOTS of info on remedies for ATP generation.

I am assuming that you have ruled out mild (sub clinical) hypothryoidism which causes that strenuous breathing. Be ware that both form thryoid are relevant here. T4 actively affects the operation of MTHFR (and thus Methylation), T3 stimulates ATP generation. Have you had a FULL thryoid profile done that shows how well you are converting T4 to T3?

Realise too that problems with the Electron Transport Chain in ME could mean that low ATP affects creates low phosphorylation of B-Vitamins. Low phosphorylation in turn can lower Methylation despite normal 23andMe results.

Brian
 

Crux

Senior Member
Messages
1,441
Location
USA
@Crux

Hi Crux
I'd like to ask, was the B12 that helped you the Methyl or some other B12
Thanks,
SD

Hi Snowdrop;

The B12 that helped me at that time was the methylcobalamin. I take the Enzymatic Therapy brand methylcobalamin now. ( I've also been taking some hydroxocobalamin in addition, and have had a good response to it too...not to confuse things.)
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Hi Snowdrop;

The B12 that helped me at that time was the methylcobalamin. I take the Enzymatic Therapy brand methylcobalamin now. ( I've also been taking some hydroxocobalamin in addition, and have had a good response to it too...not to confuse things.)
@Crux
Thanks for your response. It is helpful
SD
 

Lynn_M

Senior Member
Messages
208
Location
Western Nebraska
Brian,

Could you explain more about T4 actively affecting the operation of MTHFR?

My understanding is that T4 is the inactive precursor to the active T3, so I don't understand how T4 affects MTHFR. I am homozygous MTHFR 1298C, along with having many other MTHFR and folate-impacting snps, but not C677T. I've been on thyroid supplementation for 64 years due to surgical removal at age 2 of a congenital thyroglossal duct cyst. For the last 40 years I've been on either Armour or now Nature-throid. My FT3 is well over the commonly used current range and my T4 is mid-range.

Also, my Great Plains OAT showed a very low phosphoric level. Could this measure be related to my ability to phosphorylate B-Vitamins?

Lynn

T4 actively affects the operation of MTHFR (and thus Methylation), T3 stimulates ATP generation.

Realise too that problems with the Electron Transport Chain in ME could mean that low ATP affects creates low phosphorylation of B-Vitamins. Low phosphorylation in turn can lower Methylation despite normal 23andMe results.

Brian
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
Have you had a FULL thryoid profile done that shows how well you are converting T4 to T3?
Brian,

What is a FULL thyroid profile? I was put on T4 last January, and since then my body temp went up (96.4 to almost 98), but my T3 went down just a little. They did some antibodies, but not a reverse T3, if I remember right. Anyway, I've lost all my sex hormones and my cortisol is really, really low too, so I've got other problems to deal with. I'm just curious for now, and will be able to use the info later, after I get some other stuff straightened out. Thank you!
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Brian,

What is a FULL thyroid profile? I was put on T4 last January, and since then my body temp went up (96.4 to almost 98), but my T3 went down just a little. They did some antibodies, but not a reverse T3, if I remember right. Anyway, I've lost all my sex hormones and my cortisol is really, really low too, so I've got other problems to deal with. I'm just curious for now, and will be able to use the info later, after I get some other stuff straightened out. Thank you!

Hi Criterina,

AdoCbl, MeCbl, l-methylfolate and LCF (or ALCAR, person dependent) deficiencies can severely affect sex hormones, cause reproductive failure, affect sexual response. From the list of nutrient responsive symptoms derived from the larger composite list of detail expanded multi national of deficiency symptoms of B12 and folate.

Sexual related symptoms, both men and women – These responded with the most response to lesser responses in order to MeCbl, Metafolin (l-methylfolate), AdoCbl, L-carnitine fumarate

reduced libido - loss of sexual desire
loss of orgasmic intensity
unsatisfying orgasms
inability to orgasm
loss and/or change of genital sensations
burning genital skin sensation
unable to feel aroused
numb genital skin
low sex hormones

MEN
In order of response – MeCbl, AdoCbl

low testosterone men

In order of response – MeCbl, Metafolin, AdoCbl, L-carnitine fumarate
erectile dysfunction men

In order of response – MeCbl, Metafolin, AdoCbl
low sperm count
poor sperm motility
Poor sperm quality
no sperm


WOMEN
In order of response – MeCbl, AdoCbl

low testosterone
low estrogen

In order of response – MeCbl, Metafolin, AdoCbl, L-carnitine fumarate
post partum depression
post partum psychosis

In order of response – MeCbl, Metafolin, AdoCbl
Frequent miscarriage

In order of response – MeCbl, Metafolin
False positive pap smears, defective cells
menstrual symptoms

As a well working methylation and ATP generation system are critical to the production of hormones from cholesterol the effect can be prompt. If it has been sustained for a long time response appears much more variable. Pregnenolone is one step up the chain from cholesterol and is helpful for many. DHEA can help as well but is more specific to the sex hormones. I take both as well as getting supplemental testosterone prescribed and am tested regularly.

Thyroid hormone is important as well. It is a very interactive system.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
Brian,

What is a FULL thyroid profile? I was put on T4 last January, and since then my body temp went up (96.4 to almost 98), but my T3 went down just a little. They did some antibodies, but not a reverse T3, if I remember right. Anyway, I've lost all my sex hormones and my cortisol is really, really low too, so I've got other problems to deal with. I'm just curious for now, and will be able to use the info later, after I get some other stuff straightened out. Thank you!

Critterina
A full thyroid profile includes three hormones:
TSH
: This hormone causes T3 and T4 to be produced. It gives an indication whether the body is happy with the level of T3 or T4 (e.g. more is needed if you are infected and need to fever).
T4: Stimulates some things T3 does not (though many docs consider it 'inactive') e.g. Vitamin B9 and B12 activation.
T3: Is the most active form of hormone and promotes energy generation and use.

Your T4 therapy is possibly lowering TSH and thereby causing T3 to be lowered.

If they were thorough enough to do antibodies they probably did TSH.

Other Hormones
Firstly, I agree completely with Fredd - Methyl-B12 and Methyl-B9 can have a profound affect on many hormones. They can also increase your native Thyroid hormone production - so care needed if you are taking supplemental T4. You will need to discuss this with your doctor and monitor T3/T4 levels closely if using both. Ideally you want your thyroid gland to start working for itself - too much T3/T4 can do permanent harm to native production it can also induce a crash. If Fredd's approach works, reducing the stuff you are taking will be highly beneficial.

With respect to female sex hormones, I am not expert enough to advise.

You can slightly improve multiple steroid hormones (Cortisol, Testosterone, Aldosterone) using Liquorice extract. It lowers the speed they degrade at thus meaning levels come up without your glands working harder and without the risk of shutting down your adrenal glands. You need one that has not been deglycyrrhizinated (that's what does the good). Only use this if your Doctor has not prescribed Cortisol (or Hydrocortisone).

Cortisol might also improve by taking NADH the adrenal glands use a lot of it. It must be in sub-lingual tablets (stomach acid destroys it). It may also greatly improves ATP generation in some (but not all) ME patients. Also lots and lots of Vitamin C it has wide ranging effects on immunity and adrenal health. I find I need at least 5000mg / day.

Aldosterone is low in a lot of ME patients and causes too much urination and low blood pressure. As a result if it works then your blood volume will go up (as may your blood pressure) - correcting this has a fantastic effect on brain fog an dry mouth.

B
 
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Leopardtail

Senior Member
Messages
1,151
Location
England
Brian,

Could you explain more about T4 actively affecting the operation of MTHFR?

My understanding is that T4 is the inactive precursor to the active T3, so I don't understand how T4 affects MTHFR.
Lynn

Lynne,

T4 is not inactive, just less active for most things. This one caught me by surprise too. There is a video (very basic) on the interaction of T4/T3 on MTFR.net - Dr Ben Lynch (at that site) is the expert on this stuff. Research has shown that MTHFR is activated by T4 - to my knowledge why this occurs is not known but Ben is the person to ask. The research on T4 and MTHFR is relatively new and will likely be unknown to your doctor. Most medics have a very limited understanding of the biochemistry going on in cells. If you are taking supplemental T4 then its not likely that you are lacking.

For the last 40 years I've been on either Armour or now Nature-throid. My FT3 is well over the commonly used current range and my T4 is mid-range.

Lynn
Without knowing why your doctor chose Armour I am reluctant to comment on this one. Basically Armour is a mix of T3/T4. There are sometimes reasons to run it higher, but this is one for a fully qualified doctor (my field is the interaction of hormones of cellular chemistry - I am a scientist not a doctor). I would suggest you query this one with him and establish whether you are on the right hormone mix for you.

Also, my Great Plains OAT showed a very low phosphoric level. Could this measure be related to my ability to phosphorylate B-Vitamins?
Phosphrylation referes to Enzymes using ATP to activate B-Vitamins. The more likely cause is low ATP generation (common to all/most people with ME). This is where Ribose, ALCAR, CQ10, Creatine, (maybe) NADH come in. Jacob Titelbaum covered this well in "Fatigued to Fantasic".
He does not assume you are taking active B Vitamins though (excluding NADH) hence I would start with lower doses than he recommends.

I chatted with Alex: and yes the phosphoric acid matters a lot it's important that your level of Vitamin D is high enough (often low in ME) the phosphate itself normally come from vegetables - once your Vit D is sorted, I would suggest you chat with your doc, or Alex.

AdeonsylCobalamin (mentioned by Fredd) can also help and may well be needed for other reasons depending upon your SNPs.

I am homozygous MTHFR 1298C, along with having many other MTHFR and folate-impacting snps, but not C677T. I've been on thyroid supplementation for 64 years due to surgical removal at age 2 of a congenital thyroglossal duct cyst.

1289C is about BH4 not B9/Folate
1289C does not affect Methylfolate (B9) production (but your ME might through low ATP). What it does affect is the alternative pathway for BH4, what that means is that for you taking very high Methyl-B9 doses will not cause BH4 to be produced.

There are good theoretical grounds for thinking BH4 is low, but as yet no research for PWCs. Supplementing BH4 is expensive unless you have insurance to cover it and your doctor may not be all that co-operative.

A good approach is to take lots of Ascorbic Acid (Vitamin C) it helps both to preserve and to regenerate the BH4 your body is producing. I prefer simple Ascorbic Acid rather than other forms since it needs no processing, but do not take more than 1000mg at once. I take 5000mg a day and find it helps my ME greatly.
 
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