Is Ammonia/CBS Upregulation my main issue now?... Please help!

[DFams]

So I was doing very well for a while, on just a sort of basic Methylation protocol. But now I'm struggling a great deal again, and I think I may have figured out the potential reasons why...

(I realize this is very very long, but please bare with me)



Some background...

My MAIN issues are glutathione deficiency, and very poor digestion. I am an "overmethylator" (or all the symptoms that go with that), almost certain I have copper toxicity (though 'somewhat' doubting lately), tested for MTHFR, but clearly have other mutations too, specifcally that of CBS upregulation causing ones.

No money to really test anything else atm though, and still trying to find a new doctor atm. I've also tried pretty much everything in existence, every medication from doctors, supplement, protocol, diet that there is... and not only did none of it ever help, but most of it made me worse (until I discovered methylation).

I should also mention, that because my digestion is so poor... I can only handle a very limited amount of supplements per day. Like 2-3 pills (better if it's a complex then), regardless of what they are. And almost every supplement, (and food for that matter), save Bs, make me feel worse, or doesn't digest at all. Dozens of food allergies too.

However I eat really healthy (can't tolerate more than veggies and turkey though). I exercise, sleep early (9pm), drink plenty of water, destress, not working (can't cus of this illness and anxiety/ocd).



My story, and reasoning...

I've been trying to get better for many more years than I care to admit, but only recently found out about methylation, glutathione, copper toxicity, and all the things involved.

I've been on the "methylation protocol" for 9 months now, and was making real progress and felt like I was actually healing for the FIRST TIME EVER, but this happened a few times during said protocol... and then things that I was doing for it slowly stopped working each time, after a while, and I'm trying to figure out why.

Right before I started the protocol too, I developed bad heart palpitations, this terrible "skull splitting headache" (I call it) on the left side of my head just above my temple, very bad kidney area pain, very bad thyroid pain, as well as extremely dark infrequent urine, despite drinking a lot of water... and a bad intolerance to all animal protein (ammonia). An unreal worsening of my anxiety. On top of dozens of symptoms I already had.

But as soon as I discovered MTHFR and started Folate ALL OF THIS went away, almost immediately (save the ammonia)... For a time... I did after a while go through what I guess would be "overmethylation hell" too, but also still suffered from sulfur and meat intolerances, and had to follow a sort of anti-ammonia protocol. I was already doing charcoal and magnesium flushes (for the copper), which I found helped me a TON.

But the problem with the Folate, and pretty much everything following it... was that after a few months (or less), it stopped having any effect. Not that I was just used to it or something, but I literally regressed COMPLETELY in every symptom and form of my illness.

The same thing happened when I added B2 (sometimes with folate, sometimes seperately)... I felt great, for a bit... then awful, basically completely reverted back to as sick as before. B12, same thing (tried all 3 non-cyano kinds). Felt good, then awful. Couldn't even digest it after a while.

I realized that I in fact, needed all of the B vitamins for this to work... and that each time I took any of the above 3, or any other Bs by themselves, it appeared to me that I was simply depleting all of the other ones (thaimin, niacin, b5, b6, etc). Which turned out the be the case. Because the absolute most drastic healing and improvement I've ever made, happened a few days after I started a "Methylated B complex".

And THAT was truly amazing... I felt great. Like I could actually FEEL the GSH production happening (or at least it's benefits). I was able to digest foods again I haven't been able to in YEARS. My terrible insomnia went away, actually tired at night and energetic during the day, aches gone, migraines/headaches slowly fading... New things happening in my body that I've just never experienced before. I could eat meat again finally! As much as I wanted, and sulfur intolerance was MUCH lower.

And then... that all stopped too. After about a month of feeling great, I started getting really cold... particularly in the morning and noon. Heart palpitations started to return... bad bad kidney area pain, except this time mostly in my lower back. Pains everywhere, migraines, "skull splitter", etc. Now my thyroid is killing me again. Insomnia and restless sleep is back, bad. I either urinate extremely frequently (especially when cold) or not at all... Soon enough my intolerance to meat came back, sulfur intolerance became worse again. And my unbelievably bad anxieties are back. A complete regression, from where I'm standing.

And something very odd too... my potassium intolerance, and fat intolerances (every single kind) have gotten AWFUL. Something that USED to be a big problem for me, many years ago... before I got worse. Oddly enough. And on top of potassium intolerance, I also seem to be not even ABSORBING salt very well... and I have no idea why. My saliva will be salty, and (sorry to be gross) my BMs will REEK like low tide... So my sodium-potassium ratios are completely out of whack... My adrenals are burnt out much easier, and I'm much more irritable, etc.

This situation though, is one where something clearly has to change... it's definitely NOT a situation where I'm just "detoxing" or will get better if I "stick with it".

Whenever I take my B complex now too, I usually feel much WORSE. If I take individual B's it's not so bad... but it seems like the methyl Bs, or any methyl-bound nutrients, seem to cause the biggest problems...

And now I feel like I'm basically back where I started, and getting even worse. With some new symptoms - actually I should say old, because the ammonia symptoms, and the freezing cold/urinating very frequently, intolerance to all fats, etc, were things that I USED to have problems with many years ago.. I almost feel like maybe this is sort of a twisted form of progress? Or that I was actually so sick, that whatever function was causing THAT to happen, even stopped. But now has rebuilt enough to feel like this again? But it clearly seems to be an ammonia problem...

Although something brand new I've never experienced before... I get a sort of weird pressure on my face, that gets really bad sometimes. Almost always after I take my B complex, or go for a walk... which makes me feel awful now. The only upside, is that it appears that taking all those B vitamins has improved my digestion of a few other supplements... particularly that of minerals, but not so much other vitamins like a, c, e.

I'm going to post in a reply, what I 'think' is might be causes of all this, and also some questions... I know this is already really long, but I could REALLY use some help here.

 

[DFams]

My conclusions, from my experience and all that I mentioned above... (which may be very crude and lacking understanding, I'm sure)

So I think what happened was, ammonia wasn't a problem for me for a while. Especially after starting the B complex. But now for whatever messed up reason, it is again... and it's causing all these crazy symptoms again, and new ones. And above all it's holding me back from finally getting better...

The problem I'm having is, that I'm frantically trying to figure out exactly why ammonia is a problem again, when it wasn't before. And as I mentioned above, I'm wondering if It's because I made some twisted sort of progress, enough to get back to a point where ammonia production, and poor detoxification/breakdown of it is happening again. Like as if... my methylation cycle was so out of whack until I started the B complex, that it couldn't even do that much...

The only other thing I can come up with too, as a cause for this. Is that perhaps I've been simply taking too many B's, and not enough other stuff. Despite eating healthy. And that maybe the cause of these issues, are that by taking nothing but a B complex, as a supplement, it's depleted other glutathione cofactors, or minerals in general (manganese, molybdenum, and maybe even magnesium) to the point where I did actually regress BACK to ammonia problems...

Since I've clearly depleted certain B vitamins, many times over, by not taking a B complex... this doesn't seem unlikely... And I DO feel a 'tiny' bit better when I stop the b complex, and take a full multi-vitamin-mineral complex. But I'm not so sure this will be a good solution to my problems, since it doesn't seem to be enough (and also all contain potassium iodine, which im quite intolerant to, and copper, or both).



So my questions for you folks are...

1) Do you think that the main thing holding me back now, and my main concerns, sound like it's the CBS upregulation, and ammonia, getting in the way of me healing?

2) Do you think it's possible that I just "built up" my methylation enough finally, or whatever mechanism involved, to a point where ammonia became a real problem again?

3) Do you think I instead just simply depleted certain other nutrients or cofactors involved in getting rid of it (manganese/molybdenum), by taking 'only' a B complex as a supplement for a long period of time. Like in otherwords I need to rebalance EVERYTHING, not just Bs?

4) Do you think that homocysteine could be playing a part in this? I know it's usually said that CBS upregulators have low homocysteine... but it worries me that since I'm not metabolizing methylfolate or any of my Bs very well anymore, that it could be being produced on top of the ammonia and potential sulfite problem...

5) Some other potential explanation for whats going on with me...

 

[Valentijn]

1) Do you think that the main thing holding me back now, and my main concerns, sound like it's the CBS upregulation, and ammonia, getting in the way of me healing?

No, the usual CBS SNPs aren't capable of causing any problems. I'm afraid it's a myth originating with unscrupulous sellers of supplements, and is contradicted by the research showing the SNPs to either be beneficial or incapable of having any impact at all.

4) Do you think that homocysteine could be playing a part in this?

If worried about it, get your blood homocysteine tested. It's a pretty routine lab test.

 

[DFams]

No, the usual CBS SNPs aren't capable of causing any problems. I'm afraid it's a myth originating with unscrupulous sellers of supplements, and is contradicted by the research showing the SNPs to either be beneficial or incapable of having any impact at all.


If worried about it, get your blood homocysteine tested. It's a pretty routine lab test.

Once again, I'm not interested in whether you think cbs upregulation is a myth or not. Not interested in debating it either.

I know that I HAVE a problem with upregulation, ammonia, and every symptom related to it. I'm just trying to figure out if it's the main cause of my current setbacks.

Please refrain from posting further in my threads. Especially if you have nothing to contribute to what you think might be the real cause, if not this.

 

[Valentijn]

Once again, I'm not interested in whether you think cbs upregulation is a myth or not. Not interested in debating it either.

Unfortunately people spreading the CBS myth can be harmful to other patients. If someone is posting misinformation, I do feel obliged to post a correction.

In the event that you do not wish to hear contrary information, I recommend posting in a blog or group, where you have control over the content.

 

[JES]

My MAIN issues are glutathione deficiency, and very poor digestion. I am an "overmethylator" (or all the symptoms that go with that), almost certain I have copper toxicity (though 'somewhat' doubting lately), tested for MTHFR, but clearly have other mutations too, specifcally that of CBS upregulation causing ones.

I'm afraid it's impossible to give any specific answer to your questions based on the information you provided. Have you had genetic testing done for other SNPs than MTHFR? MTHFR is a very common mutation. If you have the heterozygous variant, it means your MTHFR enzyme still works at 70% effectiveness. Roughly 30-40% of the population has this variant, depending on where you live, so basically it's flipping a coin whether you get it at birth or not. The homozygous variant is roughly in 10% of population and reduces the enzyme effectiveness to 30%, which might warrant a trial of supplementing with Folate. Still, most people with this more severe variant are perfectly healthy.

Unless you have some more lab results that we could interpret, I would consider your hypothesis of being an "overmethylator" and having CBS mutations pure speculation. Even people who have researched methylation defects and CFS/ME, such as the late Rich van Konynenburg, did not consider it a simple matter of undermethylation vs. overmethylation, IMO it's mostly pseudoscience.

 

[alicec]

I know that I HAVE a problem with upregulation, ammonia, and every symptom related to it. I'm just trying to figure out if it's the main cause of my current setbacks.

Perhaps part of your problem is that you have fixated on a mechanism and are tying to make your symptoms fit it. The proposed mechanism is itself faulty and is limiting your understanding.

 

[JES]

I should also mention, that because my digestion is so poor... I can only handle a very limited amount of supplements per day. Like 2-3 pills (better if it's a complex then), regardless of what they are. And almost every supplement, (and food for that matter), save Bs, make me feel worse, or doesn't digest at all. Dozens of food allergies too.

Forgot to answer this part. There are several ways to improve your digestion, it's much easier to deal with this than understanding the methylation process. Digestive enzymes will help your gut to break down food, there are several such supplements available in health food stores. The other reason for poor digestion is non-acidic stomach, which can be result of PPI use or simply because your stomach doesn't produce enough acid. Apple cider vinegar is a good supplement for this, it's acidic and has a low pH around 2, but will usually not cause issues like acid reflux, might actually improve them.

 

[DFams]

Forgot to answer this part. There are several ways to improve your digestion, it's much easier to deal with this than understanding the methylation process. Digestive enzymes will help your gut to break down food, there are several such supplements available in health food stores. The other reason for poor digestion is non-acidic stomach, which can be result of PPI use or simply because your stomach doesn't produce enough acid. Apple cider vinegar is a good supplement for this, it's acidic and has a low pH around 2, but will usually not cause issues like acid reflux, might actually improve them.

Unfortunately none of the things you recommended, or anything else I've tried for it have worked for me. Digestive enzymes and anything even remotely acidic (lemon juice, acv, spices, even black pepper, fermented foods, etc) make my digestion and all other symptoms MUCH, MUCH worse. Probiotics are the only thing that have a 'neutral' effect, which I take every day of many kinds.

And believe me when I say it is most certainly NOT an easy thing to deal with, since I've been at it for 14+ years. If it was as easy as you say, I wouldn't be sick, at all.

And unfortunately as well, the ONLY, singular thing in my entire life, that not only didn't make things either worse (about 90% of things I've tried), or had no effect at all - but instead actually gave me immense benefit for a while (while off and on)... was recently supplementing methylation.

Right now my digestion is absolutely terrible, due to, without a doubt, a lack of glutathione (and for no other reason)... which I was flat out incapable of producing before I started a methylation protocol. Which means constant "damage" being done to the digestive system and organs, since there's nothing at all to protect any of it from oxidative stress, free radicals, further poorly digested foods/supplements, stress, etc.

And believe me when I say, I can freaking feel said damage, and how much it directly effects my digestion, every. single. time. It's REALLY bad.

Now I am very much capable of producing it (GSH), but apparently need to find a balance of cofactors... and somehow deal with this ammonia and sulfur intolerance issue... Regardless of it's source.

 

[JES]

Unfortunately none of the things you recommended, or anything else I've tried for it have worked for me. Digestive enzymes and anything even remotely acidic (lemon juice, acv, spices, even black pepper, fermented foods, etc) make my digestion and all other symptoms MUCH, MUCH worse. Probiotics are the only thing that have a 'neutral' effect, which I take every day of many kinds.

Digestive enzymes and acid is basically all that it takes to digest food, so it sounds weird to me that those supplements would cause worsening in digestion. But then again, many people with CFS/ME suffer from something called SIBO (small intestinal bacterial overgrowth), which causes slowdown of gut motility and gastroparesis, which in turn leaves the food sitting in your stomach / small intestine. Dr Meirleir finds this all the time in his patients, I suffer from it periodically as well.

 

[NotThisGuy]

@DFams

I have a lot of your symptoms. Especially the potassium and sodium intolerance. You are the first one besides me to have this kind of symptom.
Have you figured out how to do something against it?