Looking for help with Methylation/ Possible ATP issues (Test Results)

[EzPort]

Hello I'm new to the forum and recently posted up my information on my Welcome thread but didn't seem to be getting any feedback there. A moderator recommended I post the information here. I am going to copy and paste my message from the last thread here and attach some test results. I would greatly appreciate any help from the community

As I mentioned earlier, I have always had energy and sleep issues as far as I can remember. My sleep schedule is completely inverted, and it seems my body doesn't want to fall asleep until 4AM. This makes it impossible to wake up on certain days I will sleep through multiple alarms and I have bought some of the most obnoxiously loud alarms available. I was desperate to find some relief and thought cigarettes might be causing these issues, so I set out to quit. Long story short I was reading online about how niacin (nicotinic acid) might be able to help with cravings so I blindly started dosing it at high levels. This was before I really knew about MTHFR/CFS or that I had methylation issues. I believe this high dose of niacin caused my methylation to crash even further and I became a mess. This is what led me to finding out about methylation, running test, and finding this site.

I ran a 23andme and found out I am +/+ for MTHFR C677, +/+ CBS 699T, +/- on MTR, MTRR, COMT's, NOS3 and others. This led me to finding a doctor who can order some of these more specific test. I ran a methylation panel and have found some odd results. I have low SAM levels and High SAH levels. My SAM is 87 nmol/L while my SAH is 21 nmol/L with a ratio of 4.1 SAM:SAH. My homocysteine levels are 8.2 which are not extremely high but higher than normal. This is obviously indicative of a methylation issue and "normal" for people with MTHFR that ive seen. The head scratcher for me is that I have completely normal Methionine levels which I have always seen low in other with these methylation issues. It seems like my body has issues with converting Methionine into SAM? From what i understand (which is limited I am a newbie) this could mean I am very low on ATP? Can someone please help me interpret these results? I will attach the methylation panel scan.

Another note that might be unrelated is that I have also run an Neuro Amine test and besides neurotransmitters being low I have very high taurine (2376 umol). It seems like my transulfuration pathway is overactive in producing Taurine? Not sure how to interpret this. I will also attach that sheet here

As I also mentioned earlier, I have tried Freddd's protocol and initially got some decent results with increased energy. These effects faded over time and eventually I believe I started becoming overmethylated as I was getting extremely irritable/anxious and libido tanked. I also ran an Organic Acids test and it shows my Methylmalonic levels are on the low side of normal (0.31) which should mean I am definitely not deficient in B12? I will also attach that snapshot of the Nutritional marker on the OAT test.

I appreciate any input anyone has on these results I am desperate for some relief and energy to get out of bed. I am not happy with my initial Dr. and am in the process of finding a new one but thought I would reach out here hoping for some help.

 

[Eastman]

@EzPort

I presume you have tried melatonin for your sleep issues. Nobiletin is another substance that may affect the circadian rhythm (see here).

Magnesium is supposed to be involved in the conversion of methionine to SAM-e (see here).

The high taurine reading is intriguing. I was wondering whether your body is trying to increase tauroursodeoxycholic acid production. Do you have blood tests showing high liver enzymes?

Sleep disturbances in patients with liver cirrhosis: prevalence, impact, and management challenges

 

[EzPort]

@EzPort

I presume you have tried melatonin for your sleep issues. Nobiletin is another substance that may affect the circadian rhythm (see here).

Magnesium is supposed to be involved in the conversion of methionine to SAM-e (see here).

The high taurine reading is intriguing. I was wondering whether your body is trying to increase tauroursodeoxycholic acid production. Do you have blood tests showing high liver enzymes?

Sleep disturbances in patients with liver cirrhosis: prevalence, impact, and management challenges

Thanks for the reply ! Yes I have tried melatonin and it just makes me a zombie the next day. Every time I have taken it I have slept an obscene amount of hours and was impossible to wake up. I already have issues waking up. On a “normal” day without melatonin I will have an extremely difficult time falling asleep but when I actually do fall asleep I go into a deep hibernation and can’t wake up I also almost never have any dreams.

I do take a lot of magnesium already as I used to have horrible leg cramps and it has helped out a lot. I take anywhere from 400-800mg a day. I always take 200 MG of Mag Threonate and 200 MG of Mag Glycinate daily. I will also sometimes drink 200-400 MG of Mag Bicarbonate

That’s a new theory I haven’t thought of regarding the Taurine. Can you please elaborate I’m not sure what it means? I also ran a bunch of traditional labs with my previous Dr. I am waiting on the scans of the results. Hopefully will have them today or tomorrow.

Do you think an ATP supplement would be worth a try?

 

[Eastman]

That’s a new theory I haven’t thought of regarding the Taurine. Can you please elaborate I’m not sure what it means? I also ran a bunch of traditional labs with my previous Dr. I am waiting on the scans of the results. Hopefully will have them today or tomorrow.

As indicated by the study I linked to in the earlier post, it is possible that a liver problem may be the cause of the sleep issues you are experiencing.

There is evidence that treatment with tauroursodeoxycholic acid (TUDCA), a bile acid, is helpful in liver disease (see e.g. here and here).

In view of that, it seems reasonable to me that when faced with liver issues, the body would respond by attempting to increase endogenous production of TUDCA. That would include increasing production of taurine, which is a component of TUDCA.

Do you think an ATP supplement would be worth a try?

It might, but finding the root cause of the problem would be preferable.

 

[EzPort]

As indicated by the study I linked to in the earlier post, it is possible that a liver problem may be the cause of the sleep issues you are experiencing.

There is evidence that treatment with tauroursodeoxycholic acid (TUDCA), a bile acid, is helpful in liver disease (see e.g. here and here).

In view of that, it seems reasonable to me that when faced with liver issues, the body would respond by attempting to increase endogenous production of TUDCA. That would include increasing production of taurine, which is a component of TUDCA.



It might, but finding the root cause of the problem would be preferable.

Thanks not sure how I missed the link the first time will give it a read. Also I was promised the traditional lab results at some point today I’m not sure exactly what they ran but hopefully I can get some clarification on this.

Do you have any theories on why my methionine levels are perfectly normal yet my SAM levels are low? Taking magnesium out of the picture it seems like it can only be low ATP? That would also explain my extremely low energy and I’m very quick to tire out/run out of steam. I agree about the root cause. What do you think can be a cause of low ATP? On the organic acid test my Kreb cycle metabolites came up normal with slightly elevated Malate levels so I’m just scratching my head over here. Thanks for your time again

 

[renski]

I think on the Organic acids test, the markers need to be in the middle of the range to be normal, so low or high is bad. I think the marker can just be low as well if you aren't excreting enough of the organic acid to show up on the test.

 

[Eastman]

Do you have any theories on why my methionine levels are perfectly normal yet my SAM levels are low? Taking magnesium out of the picture it seems like it can only be low ATP? That would also explain my extremely low energy and I’m very quick to tire out/run out of steam. I agree about the root cause. What do you think can be a cause of low ATP? On the organic acid test my Kreb cycle metabolites came up normal with slightly elevated Malate levels so I’m just scratching my head over here. Thanks for your time again

ATP is made in the mitochondria, which is often impaired in liver diseases.

Mitochondria in Chronic Liver Disease

 

[renski]

Also oxidative stress impairs MAT, you might need antioxidants, your NAC/Vit C are low on the organic acids..

 

[EzPort]

I think on the Organic acids test, the markers need to be in the middle of the range to be normal, so low or high is bad. I think the marker can just be low as well if you aren't excreting enough of the organic acid to show up on the test.

Thanks for the feedback! on the OATs test the categories with an asterisk mean that a low score means you have higher levels of that nutrient its inverted. So my Methylmalonic numbers being on the low side of normal should mean I don't have a deficiency of Vit B12 if anything I have slightly elevated levels. Does this mean I should not be trying the Freddd protocol again or taking any specific methylated B vits besides whats in my multi?

My traditional labs came back and one of the categories was RBC Folate the reference range for normal is >280 ng/ml and my levels were 958 so well above deficiency.

Considering my Methylmalonic numbers are normal, my folate numbers are normal, and my methionine levels are normal it seems like my pathways from Homocysteine to Methionine are fine and my issue is with turning Methionine into SAM?

 

[EzPort]

ATP is made in the mitochondria, which is often impaired in liver diseases.

Mitochondria in Chronic Liver Disease

I was finally able to get my test results back and anything related to liver looks fine I will list the values below by Name/ reference range/ my result

Alkaline Phosphate / 30 - 120 U/L / 67 U/L
Total Bilirubin / 0.10 - 1.20 mg/dL - 0.33 mg/dL
SGOT (AST) / 0 - 41 U/L - 19 U/L
SGPT (ALT) / 0- 45 U/L - 16 U/L
Gamma Glutamyltransferase - 2 - 65 U/L - 13 U/L
Globulin - 1.0 - 4.0 g/dL - 2.2 g/dL

 

[EzPort]

Also oxidative stress impairs MAT, you might need antioxidants, your NAC/Vit C are low on the organic acids..

Interesting and is MAT responsible for SAM conversion? My Vitamin C level was on the floor I was shocked but my Dr. just shrugged it off which was puzzling and part of the reason I am trying to find a new Dr. The reference range is 10 -200 for Vitamin C and my level is a 0.15 which seems extremely low.

I have tried NAC in the past and didn't have a good experience at all it seemed to make me crash even further. From my limited research it seems that's a common reaction here.

Which antioxidants do you recommend? Do you have any theories on why my oxidative stress levels would be high/ Vit C so low? I live a pretty slow paced life and try to eat as good as possible.

 

[renski]

Thanks for the feedback! on the OATs test the categories with an asterisk mean that a low score means you have higher levels of that nutrient its inverted. So my Methylmalonic numbers being on the low side of normal should mean I don't have a deficiency of Vit B12 if anything I have slightly elevated levels. Does this mean I should not be trying the Freddd protocol again or taking any specific methylated B vits besides whats in my multi?

My traditional labs came back and one of the categories was RBC Folate the reference range for normal is >280 ng/ml and my levels were 958 so well above deficiency.

Considering my Methylmalonic numbers are normal, my folate numbers are normal, and my methionine levels are normal it seems like my pathways from Homocysteine to Methionine are fine and my issue is with turning Methionine into SAM?

Homocysteine is a little elevated, SAH is as well, look into what this means. I don't know if you should take B12/folate, these are usually not the first nutrients to take.. if you get a reaction to B12 (good or bad) you pretty much know you're deficient in it, but it's a matter of figuring out what to take first otherwise you can make things worse. Consider gut issues, transsulfuration etc.

 

[EzPort]

Homocysteine is a little elevated, SAH is as well, look into what this means. I don't know if you should take B12/folate, these are usually not the first nutrients to take.. if you get a reaction to B12 (good or bad) you pretty much know you're deficient in it, but it's a matter of figuring out what to take first otherwise you can make things worse. Consider gut issues, transsulfuration etc.

From my limited knowledge It looks like my SAH is really elevated while my homocysteine is only slightly elevated. With my taurine levels being so high and being +/+ for CBS C699T it seems like my body is clearing the homocysteine through the transulfuration pathway and producing boat loads of taurine? I do not supplement with B6 since I know this speeds up the CBS pathway but I don't think there is a reliable way to slow it down.

 

[renski]

From my limited knowledge It looks like my SAH is really elevated while my homocysteine is only slightly elevated. With my taurine levels being so high and being +/+ for CBS C699T it seems like my body is clearing the homocysteine through the transulfuration pathway and producing boat loads of taurine? I do not supplement with B6 since I know this speeds up the CBS pathway but I don't think there is a reliable way to slow it down.

Yep transsulfuration speeds up under oxidative stress, so maybe you need antioxidants or maybe gut issues? Vit C, E, A, ALA, NAC, CoQ10, zinc, manganese, copper are all antioxidants. B3 helps glutathione too. Oxidative stress can be from toxicity/metals, gut issues.

 

[EzPort]

Yep transsulfuration speeds up under oxidative stress, so maybe you need antioxidants or maybe gut issues? Vit C, E, A, ALA, NAC, CoQ10, zinc, manganese, copper are all antioxidants. B3 helps glutathione too. Oxidative stress can be from toxicity/metals, gut issues.

I also performed a stool sample test and am awaiting those results. I mentioned in my introduction thread that before I became educated on MTHFR/Methylation I would do a lot of random supplement testing because I was desperate. I have tried a lot of these and will give you my experiences

Vit C - Gives me some energy but feels like nervous cold sweat energy
Vit E - Didn’t feel much from it
Vit A - Haven’t tried since I heard non retinol versions aren’t good for you
NAC - bad reaction made me crash
CoQ10 - Didn’t feel much from it
Zinc - Makes me extremely lethargic and tanks libido

Copper - This is the weirdest one. When I first took chelated copper I had an amazing reaction it blew my socks off. It gave me crazy amounts of clean energy I honestly hadn’t felt like that since I can remember. After about 2 weeks it faded and I started getting irritable. I have tried stopping and restarting but can never capture that reaction again. I thought I had made a magical breakthrough :-(

Haven’t tried ALA or Manganese on there own.

Going through my email I also got back an Epstein Barr Virus panel. My results were

EBV VCA AB IGM - under 36 so was “Negative”

EBV VCA AB IGG - reference range is anything over 22 is “positive” my result was 87.30

EBV Nuclear AB (EBMA) reference range is anything over 22 is “positive” my result was 459.00 !!

Not sure how to take this as there is so much conflicting information. Some people say the virus still has effects (I had mono over 20 years ago) and then some people say these people are quacks and that the virus is “dormant” with no effects.

 

[Judee]

Thanks for the reply ! Yes I have tried melatonin and it just makes me a zombie the next day. Every time I have taken it I have slept an obscene amount of hours and was impossible to wake up. I already have issues waking up. On a “normal” day without melatonin I will have an extremely difficult time falling asleep but when I actually do fall asleep I go into a deep hibernation and can’t wake up I also almost never have any dreams.

Have you tried cherry juice which also has melatonin in it? I think it works more gently than taking a supplement and you could start with just a small amount like maybe a tablespoon. (I would still take it before a non-work day though in case you get the same reaction.)

When I first took chelated copper I had an amazing reaction it blew my socks off. It gave me crazy amounts of clean energy I honestly hadn’t felt like that since I can remember. After about 2 weeks it faded and I started getting irritable. I have tried stopping and restarting but can never capture that reaction again. I thought I had made a magical breakthrough :-(

Isn't that the pits with this disease? I got the same reaction with potassium. Had 16 hours where I thought I was cured but could never duplicate it again.

Not sure how to take this as there is so much conflicting information. Some people say the virus still has effects (I had mono over 20 years ago) and then some people say these people are quacks and that the virus is “dormant” with no effects.

Your numbers still seem a bit high. I would still look into it if your doctor is willing since some ME/CFS patients have gotten better on anti-virals.

If your doctor is not willing, you could possibly look at herbals. Here is something about boswellia being Anti-EBV: https://cfsremission.com/treatment/...n-fog/boswellia-neuroprotective-and-anti-ebv/

NAC - bad reaction made me crash

A lot of people here are sulfur/thiol sensitive. Backing off of the thiol foods (and/or sulfur supplements) for a while helps. For some they can be reintroduced in limited amounts later. (That's me. Too much or too often and I get headaches.)

 

[EzPort]

Have you tried cherry juice which also has melatonin in it? I think it works more gently than taking a supplement and you could start with just a small amount like maybe a tablespoon. (I would still take it before a non-work day though in case you get the same reaction.)



Isn't that the pits with this disease? I got the same reaction with potassium. Had 16 hours where I thought I was cured but could never duplicate it again.



Your numbers still seem a bit high. I would still look into it if your doctor is willing since some ME/CFS patients have gotten better on anti-virals.

If your doctor is not willing, you could possibly look at herbals. Here is something about boswellia being Anti-EBV: https://cfsremission.com/treatment/...n-fog/boswellia-neuroprotective-and-anti-ebv/


A lot of people here are sulfur/thiol sensitive. Backing off of the thiol foods (and/or sulfur supplements) for a while helps. For some they can be reintroduced in limited amounts later. (That's me. Too much or too often and I get headaches.)

Thanks for the feedback Sorry I was down for the weekend and am now wide awake at midnight.

I have not tried cherry juice will give it a shot I actually saw that my local whole foods was selling a concentrate that is like a thick jelly. Do you think this would work? I've also seen the juice sold straight in small bottles.

Absolutely I really thought I had made a breakthrough to be honest I haven't felt that good since I ever remember. It almost seemed like a drug I thought it was to good to be true and I ended up being right unfortunately. I really wonder what it was about the copper specifically that gave me such a drastic reaction I have been chasing it down for months but cant come across anything solid.

I am really starting to wonder about the EBV and its effects. If this was a few years ago I probably would have blew it off since there is no solid backing to a lot of the stuff online but at this point I'm so desperate I'm willing to give anything a chance. Thanks for that link I am going to order some boswellia and give it a shot ASAP. I am still on the search for a competent doctor that is not to far away from me.

I really was down this weekend but with the minimal time I felt okay I did some light reading on EBV and low vitamin C correlation. A couple sites said they are related and people have had good success with high dose IV vitamin C. I obviously have to look deeper into this but it is interesting. Looking at my OAT's test again my Vit C levels sound ridiculously low if the reference range is 10 - 200 and my result was a 0.15 I am 60+ times lower than the floor and 1000+ times lower than the ceiling of normal.

I am also thinking about giving an ATP supplement a shot just to see how i react to it. With my Methionine levels being normal and my SAM levels being low the only logical reason I can come up with is low ATP. It looks like I can take 2 routes either take ATP straight or take an ATP booster like cordycep mushrooms, ginseng, creatine etc.

 

[Learner1]

You didn't post your entire OAT. Sounds like you're dumping taurine.

Is your oxalic acid high on your OAT?

 

[EzPort]

You didn't post your entire OAT. Sounds like you're dumping taurine.

Is your oxalic acid high on your OAT?

Hi there sorry I didn't want to flood to much information I know I get overwhelmed sometimes when I look at to much. Oxalic acid is in the normal range but towards the high side. I have attached the full OATs metabolites breakdown if you can spot anything else I need to focus on. Thanks for the help

 

[EzPort]

Another item that stands out from my recent labs is my Immunoglobulin A. The reference range is 47 - 310 mg/L and my result was 7 mg/L I guess the signs are pointing to some type of immune dysfunction