TL;DR Version
I have terrible health problems, especially my digestion, also have MTHFR (and likely other mutations), copper problems, etc. 100% certain of being an "overmethylator" or what that means to some MTHFR specialists (high seratonin, low histamine - "histapenia", and clearly have some major issues with my transsulfation pathway).
The answer to EVERYTHING, for my health however, is apparently Glutathione. And lacking it, is THE reason I'm this sick and unable to get better... I am certain of this after taking Lyposomal GSH. But it's wasn't enough, so I need to get tested for it, and ultimately (hopefully) get it by injections, or IV, or SOMETHING that helps my Glutathione levels. It is THE way, and the only way, I will ever get better - since my MTHFR treatment has STOPPED working. But my doctor's are idiots, and stubborn, obstinate fools. Can't get them to order any more tests. Don't know of any MTHFR/glutathione specialists, much less if my insurance will accept any such treatments.
I've also come to the conclusion that lacking Glutathione is completely responsible for my poor digestion, which is BY FAR, my biggest complaint, and also my biggest hurdle in getting better... being unable to absorb the nutrients/supplements I need to get better.
So my questions for this forum are as follows...
1) What is the best way to proceed from here? Find a doctor who specializes in glutathione/treatment? Or how can I convince my doctor to test for it?
2) Are there even "glutathione specialists" or types of doctors (hematologist, rheumatologist, gastro, whatever) who would be more knowledgeable of that particular pathway, who might have a brain, and be able to assist me in testing, understanding, and treatment of this?
3) Does insurance usually cover said treatment? I can't work, due to being this sick, so I'm on state Medicare
4) Would stopping my MTHFR treatment be necessary, or wise, for said tests - especially since if I stop ... my kidneys will probably shut down, as explained below.
5) Looking for an MTHFR specialist to actually get better... but the one's who claim to be as such, don't take my insurance on appointments (tests they order do though, apparently). Or are there any particular type of doctor that has better knowledge than others of MTHFR
So far I've seen my primary, a GI, and a hematologist... all of which are trying to tell me MTHFR really is only a "blood and cardiovascular thing" and there's little evidence to anything else, or even the blood thing in the first place. Despite the mountains of evidence and studies and doctors out there, even in this country, telling people and other doctors to the contrary.
So it would have to be a doctor who might be "up to date" on this information, and not reading out of a textbook from the 90s.
6) If folate, b12, and b2, even my methylated B complex, all seem to have stopped working, because I have so much "oxidative damage", or whatever reason - that they aren't absorbed properly, much less causing any methylation to happen - is there anything else I can do to get them, or methylation, to work again?
Since other glutathione cofactors don't seem to work, and seem to absorb even worse than the B vitamins, or cause MORE oxidative damage (as with every food and supplement I eat, no mater how "healthy"). Even lypo glutathione, and that works... but barely (haven't tried pill form, since I heard it really doesn't help and I can't afford to waste money) . The fact that it's a fat I have to absorb, and hard on my digestion, kinda defeats the purpose.
7) Anything else at all, anyone can give me for advice...
The Longer Version (might be insightful to those trying to help, and to others seeking help... but also a bit ranty, sorry)
I'm 32 and I've been sick for forever, literally, my entire life. But the worst of it, the past 6-7 years, by far. Trying and trying and trying to figure out what's wrong with me, tried every protocol, diet, supplement, herb, whatever, on the face of the planet - nothing. Meds from doctors have only made me worse, sicker, more/new symptoms, etc
Finally found out that MTHFR exists, when my mother told me about it not long ago, and that our entire family has it (relatives and all) and is the cause of a ton of their problems... went to my doctor (against all logic, and out of desperation since they're basically what made me this bad, with all their meds, in the first place). Went through hell just to get her to do the test, couldn't get any other SNP, or MTHFR related tests out of her.
Even though I'm 100% certain of the fact that I have other mutations, likely quite a few of them. In particular ones that cause me to be
Don't even know why she's so against doing tests, she's a new doctor for me. I gave no indication that I hated doctors (for reasons above), was completely willing to do everything she wanted, not pushy, am extremely polite (despite my endless frustration), and only 'asked' for a couple other tests before this. Most tests that I asked for, or that she ordered on her own, have shown that I CLEARLY have something very wrong with me, going on.
Blood in my urine, protein in my urine, kidney problems (a constant complaint of mine), liver enzymes elevated for a straight 5 years now, and ofc the last one being the MTHFR diagnosis that she tried to tell me "I don't even have the mutation at all, because it's not homozygous (from both of my parents)". FACEPALM. One doctor even insisted I was a tremendous alcoholic after looking at some GI test they did... despite my mom telling him I hadn't had a drop in years.
Anyway... after my kidneys basically shutting down, complaints of terrible digestive problems for over 15 years, complaints of liver issues, detox issues, pains that you wouldn't believe, all different kinds of literally nonstop headaches and migraines, etc etc - and basically 0 real concern/response/help from my doctors. I took matters into my own hands... again (as I've been basically doing for the past 17-18 years).
Researched and took the MTHFR treatment on my own... SUCCESS!! Finally found something that actually WORKED, for once EVER. Something that actually made a positive benefit to me... despite having to go through "methylation hell". Taking mostly folate, b12, b2, I made leaps and bounds, and regardless of side effects... actually FINALLY felt like I was actually making some progress... my digestion was improving, my migraines (particularly the last, terrible new one) were going away, I could SLEEP (worst insomnia my whole life), I was actually urinating again...
Oh btw, did I mentioned I STOPPED PEEING? Flat out, just stopped urinating before this treatment. Was eating healthy (veggies and meat only, no spices/oils/butter), drinking lots of water, exercising, going to bed early... and somehow actually GAINING weight. Drank 1/4-1/3 gallon of water a day... pee'd maybe 2 oz, per day. On top of kidney pain so bad it kept me up all night. No concern to my doctor (imagine that).
So anyway... after about 3 months of solid improvement, and even "methylation hell" going away, it all just suddenly STOPPED. That's right, just out of the blue... folate slowly stops being effective, b2 makes me WORSE, and I can't digest b12 in ANY form or ANY way of taking it (even sublingual - just destroys my stomach). Tried increasing the doses, particularly folate... nothing.
So I went online, did more research... even came here and found people discussing glutathione, and that after a while that phase of the liver/pathway needs to be treated. Especially considering that's basically MTHFR/folate's ultimate job... is pushing cysteine towards glutathione, rather than homocysteine.
SO I go through another few months, frantically (losing my freaking mind because something FINALLY HELPED ME and then just STOPPED) trying to get my body to produce more glutathione... trying all the co-factors... different combinations of the original B vitamins I was taking, different foods, more types of exercise... nothing. Just, no help. Even bought a Methylated B complex and took that... that helped... but not even freaking close to enough. Zinc also had a good effect on me a couple years ago, but that ended quickly when I could no longer digest it... now it just flat out destroys my stomach.
Just a few days ago, randomly tried taking the Lyposomal Glutathione I bought a year ago (expired now, wonderful lol)... AMAZING. The thing that made me feel MUCH worse when I took it the first couple times a year ago (cannot digest fats well at all... probably the worst problem I have, and lypo GSH is a fat), suddenly WORKED. And not only did it work... it relieved a ton of my digestive complaints, kidney pains, migraines, body aches, etc...
And not only that... oddly enough, when I took my methylated B complex (but not folate/b12/b2 by themselves) AFTER taking this lypo GSH, the methylation hell symptoms came rushing back... meaning the "methylation" from these vitamins was actually working again, not to mention the vitamins themselves... so maybe it was just an absorbtion thing all along, and glutathione actually helped that, I guess?
Well, problem is... as with everything... after a few days. THAT stopped working, too. Or at least, it's not as effective... only because I simply cannot digest it well enough. Like I said, very bad fat digestion problems... and it seems that with how bad my body is, the glutathione gets used up faster than I can absorb it..... SO, I'm basically just going around in circles with my body, getting worse and worse as time goes on... I can't digest the nutrients I need to make glutathione and heal, because my digestion is so bad due to lacking glutathione, due to lacking the nutrients needed to make it...
So here I am, ranting on these forums with even just a small percentage of my full story. Currently trying different combinations of things to get the glutathione to work again (taking it every other day, 2 packets every 3 days, taking it with glutamine (don't know if that did anything at all), alternating b complex, etc)... but also trying get my body to a point where it can start producing it on it's own again. And looking for help from any who can offer it...
Any information on this at all would be appreciated beyond words... even if it's just a hunch. But please specify if it is or not...
I have terrible health problems, especially my digestion, also have MTHFR (and likely other mutations), copper problems, etc. 100% certain of being an "overmethylator" or what that means to some MTHFR specialists (high seratonin, low histamine - "histapenia", and clearly have some major issues with my transsulfation pathway).
The answer to EVERYTHING, for my health however, is apparently Glutathione. And lacking it, is THE reason I'm this sick and unable to get better... I am certain of this after taking Lyposomal GSH. But it's wasn't enough, so I need to get tested for it, and ultimately (hopefully) get it by injections, or IV, or SOMETHING that helps my Glutathione levels. It is THE way, and the only way, I will ever get better - since my MTHFR treatment has STOPPED working. But my doctor's are idiots, and stubborn, obstinate fools. Can't get them to order any more tests. Don't know of any MTHFR/glutathione specialists, much less if my insurance will accept any such treatments.
I've also come to the conclusion that lacking Glutathione is completely responsible for my poor digestion, which is BY FAR, my biggest complaint, and also my biggest hurdle in getting better... being unable to absorb the nutrients/supplements I need to get better.
So my questions for this forum are as follows...
1) What is the best way to proceed from here? Find a doctor who specializes in glutathione/treatment? Or how can I convince my doctor to test for it?
2) Are there even "glutathione specialists" or types of doctors (hematologist, rheumatologist, gastro, whatever) who would be more knowledgeable of that particular pathway, who might have a brain, and be able to assist me in testing, understanding, and treatment of this?
3) Does insurance usually cover said treatment? I can't work, due to being this sick, so I'm on state Medicare
4) Would stopping my MTHFR treatment be necessary, or wise, for said tests - especially since if I stop ... my kidneys will probably shut down, as explained below.
5) Looking for an MTHFR specialist to actually get better... but the one's who claim to be as such, don't take my insurance on appointments (tests they order do though, apparently). Or are there any particular type of doctor that has better knowledge than others of MTHFR
So far I've seen my primary, a GI, and a hematologist... all of which are trying to tell me MTHFR really is only a "blood and cardiovascular thing" and there's little evidence to anything else, or even the blood thing in the first place. Despite the mountains of evidence and studies and doctors out there, even in this country, telling people and other doctors to the contrary.
So it would have to be a doctor who might be "up to date" on this information, and not reading out of a textbook from the 90s.
6) If folate, b12, and b2, even my methylated B complex, all seem to have stopped working, because I have so much "oxidative damage", or whatever reason - that they aren't absorbed properly, much less causing any methylation to happen - is there anything else I can do to get them, or methylation, to work again?
Since other glutathione cofactors don't seem to work, and seem to absorb even worse than the B vitamins, or cause MORE oxidative damage (as with every food and supplement I eat, no mater how "healthy"). Even lypo glutathione, and that works... but barely (haven't tried pill form, since I heard it really doesn't help and I can't afford to waste money) . The fact that it's a fat I have to absorb, and hard on my digestion, kinda defeats the purpose.
7) Anything else at all, anyone can give me for advice...
The Longer Version (might be insightful to those trying to help, and to others seeking help... but also a bit ranty, sorry)
I'm 32 and I've been sick for forever, literally, my entire life. But the worst of it, the past 6-7 years, by far. Trying and trying and trying to figure out what's wrong with me, tried every protocol, diet, supplement, herb, whatever, on the face of the planet - nothing. Meds from doctors have only made me worse, sicker, more/new symptoms, etc
Finally found out that MTHFR exists, when my mother told me about it not long ago, and that our entire family has it (relatives and all) and is the cause of a ton of their problems... went to my doctor (against all logic, and out of desperation since they're basically what made me this bad, with all their meds, in the first place). Went through hell just to get her to do the test, couldn't get any other SNP, or MTHFR related tests out of her.
Even though I'm 100% certain of the fact that I have other mutations, likely quite a few of them. In particular ones that cause me to be
Don't even know why she's so against doing tests, she's a new doctor for me. I gave no indication that I hated doctors (for reasons above), was completely willing to do everything she wanted, not pushy, am extremely polite (despite my endless frustration), and only 'asked' for a couple other tests before this. Most tests that I asked for, or that she ordered on her own, have shown that I CLEARLY have something very wrong with me, going on.
Blood in my urine, protein in my urine, kidney problems (a constant complaint of mine), liver enzymes elevated for a straight 5 years now, and ofc the last one being the MTHFR diagnosis that she tried to tell me "I don't even have the mutation at all, because it's not homozygous (from both of my parents)". FACEPALM. One doctor even insisted I was a tremendous alcoholic after looking at some GI test they did... despite my mom telling him I hadn't had a drop in years.
Anyway... after my kidneys basically shutting down, complaints of terrible digestive problems for over 15 years, complaints of liver issues, detox issues, pains that you wouldn't believe, all different kinds of literally nonstop headaches and migraines, etc etc - and basically 0 real concern/response/help from my doctors. I took matters into my own hands... again (as I've been basically doing for the past 17-18 years).
Researched and took the MTHFR treatment on my own... SUCCESS!! Finally found something that actually WORKED, for once EVER. Something that actually made a positive benefit to me... despite having to go through "methylation hell". Taking mostly folate, b12, b2, I made leaps and bounds, and regardless of side effects... actually FINALLY felt like I was actually making some progress... my digestion was improving, my migraines (particularly the last, terrible new one) were going away, I could SLEEP (worst insomnia my whole life), I was actually urinating again...
Oh btw, did I mentioned I STOPPED PEEING? Flat out, just stopped urinating before this treatment. Was eating healthy (veggies and meat only, no spices/oils/butter), drinking lots of water, exercising, going to bed early... and somehow actually GAINING weight. Drank 1/4-1/3 gallon of water a day... pee'd maybe 2 oz, per day. On top of kidney pain so bad it kept me up all night. No concern to my doctor (imagine that).
So anyway... after about 3 months of solid improvement, and even "methylation hell" going away, it all just suddenly STOPPED. That's right, just out of the blue... folate slowly stops being effective, b2 makes me WORSE, and I can't digest b12 in ANY form or ANY way of taking it (even sublingual - just destroys my stomach). Tried increasing the doses, particularly folate... nothing.
So I went online, did more research... even came here and found people discussing glutathione, and that after a while that phase of the liver/pathway needs to be treated. Especially considering that's basically MTHFR/folate's ultimate job... is pushing cysteine towards glutathione, rather than homocysteine.
SO I go through another few months, frantically (losing my freaking mind because something FINALLY HELPED ME and then just STOPPED) trying to get my body to produce more glutathione... trying all the co-factors... different combinations of the original B vitamins I was taking, different foods, more types of exercise... nothing. Just, no help. Even bought a Methylated B complex and took that... that helped... but not even freaking close to enough. Zinc also had a good effect on me a couple years ago, but that ended quickly when I could no longer digest it... now it just flat out destroys my stomach.
Just a few days ago, randomly tried taking the Lyposomal Glutathione I bought a year ago (expired now, wonderful lol)... AMAZING. The thing that made me feel MUCH worse when I took it the first couple times a year ago (cannot digest fats well at all... probably the worst problem I have, and lypo GSH is a fat), suddenly WORKED. And not only did it work... it relieved a ton of my digestive complaints, kidney pains, migraines, body aches, etc...
And not only that... oddly enough, when I took my methylated B complex (but not folate/b12/b2 by themselves) AFTER taking this lypo GSH, the methylation hell symptoms came rushing back... meaning the "methylation" from these vitamins was actually working again, not to mention the vitamins themselves... so maybe it was just an absorbtion thing all along, and glutathione actually helped that, I guess?
Well, problem is... as with everything... after a few days. THAT stopped working, too. Or at least, it's not as effective... only because I simply cannot digest it well enough. Like I said, very bad fat digestion problems... and it seems that with how bad my body is, the glutathione gets used up faster than I can absorb it..... SO, I'm basically just going around in circles with my body, getting worse and worse as time goes on... I can't digest the nutrients I need to make glutathione and heal, because my digestion is so bad due to lacking glutathione, due to lacking the nutrients needed to make it...
So here I am, ranting on these forums with even just a small percentage of my full story. Currently trying different combinations of things to get the glutathione to work again (taking it every other day, 2 packets every 3 days, taking it with glutamine (don't know if that did anything at all), alternating b complex, etc)... but also trying get my body to a point where it can start producing it on it's own again. And looking for help from any who can offer it...
Any information on this at all would be appreciated beyond words... even if it's just a hunch. But please specify if it is or not...
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