Confused about 23andme results and methylation

[pamrr]

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

 

[Valentijn]

MethylB12 might be a problem, due to your COMT and MAO results. Have you been able to try hydroxyB12 instead? Or a lower dose of methylB12?

You might also benefit from vitamin D, due to the VDR abnormalities.

 

[Crux]

The two things that helped my shortness of breath, and air hunger, were B12, and potassium.

 

[pamrr]

Hi Valentijn, I do take D3 now, as I recently realized I just can't keep from going deficient relying on sunshine and a low dose supp. I can switch back to hydroxyl, and had been on that (sporadically) until the compounding pharmacy ran out of it. -- thanks!

 

[pamrr]

Crux, I take B12 now...though realize now I need to switch to hydroxyl. Potassium...I will give that a try, thanks!!

The two things that helped my shortness of breath, and air hunger, were B12, and potassium.

 

[Crux]

Crux, I take B12 now...though realize now I need to switch to hydroxyl. Potassium...I will give that a try, thanks!!

You're welcome, air hunger is a fright !.

 

[Valentijn]

Crux, I take B12 now...though realize now I need to switch to hydroxyl. Potassium...I will give that a try, thanks!!

The need for potassium might be due to taking methylB12. So if you switch to hydroxyB12, the need for potassium might go away.

 

[pgoody]

Pamrr,

I think I might have "air hunger". Could you describe to me what air hunger is to you? How did that lead you to investigate for lymes and Babesia? I am interested in possibly looking into lymes disease as I am from MN and have been camping a lot. There have even been times where I have gone to a shooting range that's through a unbeaten trail where literally all 5 people I was with had to pull at least 3 ticks off them when we got back in the car. I just don't know what I would tell my doc.. I don't have any symptoms of being sick aside from my OCD (psychological issues only). and the following explanation of my air hunger and fatigue symtoms.

My definition of my air hunger in terms of my own symptoms would be this:
-feeling like there is lactic acid all over my muslces that won't dissapear (sort of a sense of muscle fatigue that inhibits me from wanting to move at all).
-easily "out of breath" doing exercise
-shallow breathing as a result of the "effort" it takes to breathe more deeply (which might seem odd to some)
-never being able to get in shape even after consistent rigorous exercise (3 miles of running at soccer practice each day). After doing this for about 2-3 months, I started playing basketball where on the first day of practice my bball coach smiles and says to me "out of shape?" ... after running 3 miles daily for 3 months...
-having to bend over to my knees and breath heavily when winded (which happens very easily)
I sort of relate this to how I constantly slouch in my chair as it sort of takes pressure off of my muscles, especially in my back region that would otherwise contribute to more fatigue.
It's kind of odd because it isn't any sort of "pain" that makes me slouch or bend over when winded, rather a straight up lack of oxygen. When I feel this way I really just want to lie down and let all of my muscles rest, I don't want to "cooldown" as is recommended after excersize, I just want to pass out
-feeling extremely thirsty when winded (but the actual feeling is lack of oxygen, which water couldn't resolve)

In my circumstances, it's not something I have to think about that often, because I guess I have reacted by being extremely lazy, but it increases the baseline level of stress that I have to hurdle over if I ever want to get up and do something. As you can see in highschool I did do exercise but that's because I love to compete, even when it was physically punishing for me. The reason I describe these symtpoms as air hunger is because that's sort of how my muscles make me feel. They make me feel like I need more air, like I am not getting enough oxygen.

 

[Valentijn]

pamrr
Another question: does the air hunger go away if you lay down for a while? If so, orthostatic intolerance might be the culprit.

 

[pamrr]

pamrr
Another question: does the air hunger go away if you lay down for a while? If so, orthostatic intolerance might be the culprit.

No, it is constant, even while I am sleeping.

 

[pamrr]

Pamrr,

I think I might have "air hunger". Could you describe to me what air hunger is to you? How did that lead you to investigate for lymes and Babesia? I am interested in possibly looking into lymes disease as I am from MN and have been camping a lot. There have even been times where I have gone to a shooting range that's through a unbeaten trail where literally all 5 people I was with had to pull at least 3 ticks off them when we got back in the car. I just don't know what I would tell my doc.. I don't have any symptoms of being sick aside from my OCD (psychological issues only). and the following explanation of my air hunger and fatigue symtoms.

My definition of my air hunger in terms of my own symptoms would be this:
-feeling like there is lactic acid all over my muslces that won't dissapear (sort of a sense of muscle fatigue that inhibits me from wanting to move at all).
-easily "out of breath" doing exercise
-shallow breathing as a result of the "effort" it takes to breathe more deeply (which might seem odd to some)
-never being able to get in shape even after consistent rigorous exercise (3 miles of running at soccer practice each day). After doing this for about 2-3 months, I started playing basketball where on the first day of practice my bball coach smiles and says to me "out of shape?" ... after running 3 miles daily for 3 months...
-having to bend over to my knees and breath heavily when winded (which happens very easily)
I sort of relate this to how I constantly slouch in my chair as it sort of takes pressure off of my muscles, especially in my back region that would otherwise contribute to more fatigue.
It's kind of odd because it isn't any sort of "pain" that makes me slouch or bend over when winded, rather a straight up lack of oxygen. When I feel this way I really just want to lie down and let all of my muscles rest, I don't want to "cooldown" as is recommended after excersize, I just want to pass out
-feeling extremely thirsty when winded (but the actual feeling is lack of oxygen, which water couldn't resolve)

In my circumstances, it's not something I have to think about that often, because I guess I have reacted by being extremely lazy, but it increases the baseline level of stress that I have to hurdle over if I ever want to get up and do something. As you can see in highschool I did do exercise but that's because I love to compete, even when it was physically punishing for me. The reason I describe these symtpoms as air hunger is because that's sort of how my muscles make me feel. They make me feel like I need more air, like I am not getting enough oxygen.

My air hunger feels like I can't get enough oxygen, like I am constantly suffocating. Exercising doesn't affect it directly. When it isn't so awfully horrible, I can often get a deep enough breath in that will give me a few seconds of near relief. My heart is good and lungs are clear.

In the beginning, I googled a phrase of what it felt like to me, enclosed in quotes. several results gave me the phrase, "air hunger", which by the way is very different from "shortness of breath". From there, I googled the phrase "air hunger", and frequently came up with several causes linked to it. One of them was B12 deficiency, another hypothyroidism, anemia, and finally babesia, which is associated with lyme disease (I know people who had air hunger from lyme without babesia infection). Air hunger in babesia is common.

When you are bit by a tick, usually more than one infection is transmitted. A high percentage of lyme infected also have babesia. There is also bartonella, and several other things. If you decided to get tested, find a Lyme Literate MD (LLMD) to order it for you. Regular MDs and labs will pretty much always miss it. Or, get tested through igenex.com, and get any old health care professional to sign the lab slip.

 

[pamrr]

Pamrr,

I think I might have "air hunger". Could you describe to me what air hunger is to you? How did that lead you to investigate for lymes and Babesia? I am interested in possibly looking into lymes disease as I am from MN and have been camping a lot. There have even been times where I have gone to a shooting range that's through a unbeaten trail where literally all 5 people I was with had to pull at least 3 ticks off them when we got back in the car. I just don't know what I would tell my doc.. I don't have any symptoms of being sick aside from my OCD (psychological issues only). and the following explanation of my air hunger and fatigue symtoms.

My definition of my air hunger in terms of my own symptoms would be this:
-feeling like there is lactic acid all over my muslces that won't dissapear (sort of a sense of muscle fatigue that inhibits me from wanting to move at all).
-easily "out of breath" doing exercise
-shallow breathing as a result of the "effort" it takes to breathe more deeply (which might seem odd to some)
-never being able to get in shape even after consistent rigorous exercise (3 miles of running at soccer practice each day). After doing this for about 2-3 months, I started playing basketball where on the first day of practice my bball coach smiles and says to me "out of shape?" ... after running 3 miles daily for 3 months...
-having to bend over to my knees and breath heavily when winded (which happens very easily)
I sort of relate this to how I constantly slouch in my chair as it sort of takes pressure off of my muscles, especially in my back region that would otherwise contribute to more fatigue.
It's kind of odd because it isn't any sort of "pain" that makes me slouch or bend over when winded, rather a straight up lack of oxygen. When I feel this way I really just want to lie down and let all of my muscles rest, I don't want to "cooldown" as is recommended after excersize, I just want to pass out
-feeling extremely thirsty when winded (but the actual feeling is lack of oxygen, which water couldn't resolve)

In my circumstances, it's not something I have to think about that often, because I guess I have reacted by being extremely lazy, but it increases the baseline level of stress that I have to hurdle over if I ever want to get up and do something. As you can see in highschool I did do exercise but that's because I love to compete, even when it was physically punishing for me. The reason I describe these symtpoms as air hunger is because that's sort of how my muscles make me feel. They make me feel like I need more air, like I am not getting enough oxygen.

PS -- Lyme can very definitely cause psychological issues, as well as all of what you mention above. It is very easily mistaken for lots of other diseases and conditions, and vice versa.

 

[pgoody]

This is something I ran across while looking into COMT as a cause of my OCD, as I am also V158M and H62H +/+. http://hmg.oxfordjournals.org/content/14/1/135

There are other articles out there about this, so there seems to be at least a small link between increased catecholamines and pain sensitivity. I have always hated pain and have always tried to avoid it.

I might also add that whenever I get a rush of adrenaline and my heart beats faster this feeling is worsened. At the same time anxiety can drive this sensation and it can sort of cause a feedback loop which, I believe in some circumstances, may cause an individual to become more aware of their breathing (heart beats faster) and the anxiety might cause one to feel that they need even more oxygen. Now, I do notice the fatigue and need for oxygen within myself regardless of whether I am experiencing an adrenaline rush, but I do feel that the adrenaline rush makes this fatigue worse.

 

[Lotus97]

pamrr
Rich said that air hunger could possibly be due to mitochondrial dysfunction and glutathione depletion which can both be improved through methylation. I also seem to recall shortness of breath/air hunger being a symptom of anemia.

Also, some people have commented about the quality of injectable B12 being sometimes degraded. Do you notice any effects from your injections? (good or bad)

 

[pamrr]

pamrr
Rich said that air hunger could possibly be due to mitochondrial dysfunction and glutathione depletion which can both be improved through methylation. I also seem to recall shortness of breath/air hunger being a symptom of anemia.

Also, some people have commented about the quality of injectable B12 being sometimes degraded. Do you notice any effects from your injections? (good or bad)

I am pretty sure I am not B12 deficient, and am not iron deficient. I don't think I have a way of verifying mito dysfunction...interesting. Glutathione deficiency, I've supplemented with that (the really good kind) without relief, but worth considering.

Degraded B12, I've wondered about that. I had been noticing that the first injection from a new bottle would give me a few seconds of dizziness or something. I can't recall if that was from the hydroxy or methyl.

Pam

 

[Lotus97]

I am pretty sure I am not B12 deficient, and am not iron deficient. I don't think I have a way of verifying mito dysfunction...interesting. Glutathione deficiency, I've supplemented with that (the really good kind) without relief, but worth considering.

Pam

If you have CFS/ME then you almost certainly have mitochondrial dysfunction and glutathione depletion. You don't need to take glutathione though. You can raise glutathione through methylation and also supporting the Krebs cycle which will then also improve mitochondrial dysfunction. Rich said that the glutathione depletion causes what he calls a "functional B12 deficiency" since normally glutathione protects B12.

Degraded B12, I've wondered about that. I had been noticing that the first injection from a new bottle would give me a few seconds of dizziness or something. I can't recall if that was from the hydroxy or methyl.

If the B12 was degraded then you probably wouldn't notice any effects (good or bad). If the B12 was good quality then you could notice either good effects or bad effects. Have you tried taking B12 sublingually?

 

[pamrr]

If you have CFS/ME then you almost certainly have mitochondrial dysfunction and glutathione depletion. You don't need to take glutathione though. You can raise glutathione through methylation and also supporting the Krebs cycle which will then also improve mitochondrial dysfunction. Rich said that the glutathione depletion causes what he calls a "functional B12 deficiency" since normally glutathione protects B12.

If the B12 was degraded then you probably wouldn't notice any effects (good or bad). If the B12 was good quality then you could notice either good effects or bad effects. Have you tried taking B12 sublingually?

Lotus, I wasn't DX with CFS/ME -- though with Lyme, babesia, and earlier, with adrenal fatigue and hypothyroid. So though I am not now fatigued per se, it is reasonable to think CFS/ME might be a problem for me. My Krebs cycle, while labs showed it to be normal-ish, was not great (tested more than three years ago).

I forget what my glutathione was initially. Maybe low, by labs. Functional B12 deficiency...interesting. I've used sublingual methyl B12 with no big effect. I am on methyl B12 shots, but could easily switch to hydroxyl, as that is what my LLMD wants me on anyway.

I guess I need to consult with a methylation expert (my LLMD may be one) and get a plan.

This is all so much to take in and comprehend. I am grateful for this forum.

Pam

 

[Lotus97]

Lotus, I wasn't DX with CFS/ME -- though with Lyme, babesia, and earlier, with adrenal fatigue and hypothyroid. So though I am not now fatigued per se, it is reasonable to think CFS/ME might be a problem for me. My Krebs cycle, while labs showed it to be normal-ish, was not great (tested more than three years ago).

I forget what my glutathione was initially. Maybe low, by labs. Functional B12 deficiency...interesting. I've used sublingual methyl B12 with no big effect. I am on methyl B12 shots, but could easily switch to hydroxyl, as that is what my LLMD wants me on anyway.

I guess I need to consult with a methylation expert (my LLMD may be one) and get a plan.

This is all so much to take in and comprehend. I am grateful for this forum.

Pam

There's a lot more to ME/CFS than just fatigue. A lot of people talk about being wired and tired. I've had periods of fatigue, but I tend to be more wired than tired. There's a lot of different illnesses that can cause ME/CFS. I have Lyme myself. There's nearly 100 threads on Phoenix Rising with Lyme in the title. There's also a lot of people here with various kinds of viral infections.

I started a thread about Lyme and methylation including a paper by Rich in the first post about why people with Lyme will benefit from methylation:
http://forums.phoenixrising.me/inde...glutathione-depletion-rich-vanks-posts.21563/

I don't know what type of B12 would work best for you. In theory, hydroxocobalamin would be better for someone with your SNPs. However, Rich said that SNPs aren't always an accurate indicator of how a person will respond to methylation. Since I know someone who is COMT +/+ and taking 2400 mcg of methylfolate I'm inclined to agree.

Are you taking methylfolate with your B12? You need both to do methylation. If you're not taking methylfolate then you might not be able to make an accurate assessment of which type of B12 works better for your.

 

[pamrr]

There's a lot more to ME/CFS than just fatigue. A lot of people talk about being wired and tired. I've had periods of fatigue, but I tend to be more wired than tired. There's a lot of different illnesses that can cause ME/CFS. I have Lyme myself. There's nearly 100 threads on Phoenix Rising with Lyme in the title. There's also a lot of people here with various kinds of viral infections.

I started a thread about Lyme and methylation including a paper by Rich in the first post about why people with Lyme will benefit from methylation:
http://forums.phoenixrising.me/inde...glutathione-depletion-rich-vanks-posts.21563/

I don't know what type of B12 would work best for you. In theory, hydroxocobalamin would be better for someone with your SNPs. However, Rich said that SNPs aren't always an accurate indicator of how a person will respond to methylation. Since I know someone who is COMT +/+ and taking 2400 mcg of methylfolate I'm inclined to agree.

Are you taking methylfolate with your B12? You need both to do methylation. If you're not taking methylfolate then you might not be able to make an accurate assessment of which type of B12 works better for your.

I hadn't been taking methylfolate with the methycobalamine, but have started. One thing I hadn't mentioned was that a couple of months ago when I finally started taking the methylB12 shots consistently, the peeling skin around my fingers and cuticles stopped peeling and heeled...for a few weeks before going back to peeling terribly. They've been doing that for decades.

Thanks!

 

[Lotus97]

I hadn't been taking methylfolate with the methycobalamine, but have started. One thing I hadn't mentioned was that a couple of months ago when I finally started taking the methylB12 shots consistently, the peeling skin around my fingers and cuticles stopped peeling and heeled...for a few weeks before going back to peeling terribly. They've been doing that for decades.

Thanks!

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.