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Emergency, Please Help

joejack102

Senior Member
Messages
133
I was also trying choline. I think one possible problem with choline could be that it increases methylation of homocysteine in the middle pathway and this might reduce cysteine synthesis from homocysteine. Cysteine is needed for glutathione, B5 activation, taurine,.. So I think choline might reduce glutathione like that.

I take vitamin B2 and B3 and tolerate them well. They both help recycle glutathione. With normal B12 you mean hydroxoB12? I also take that and it helps, but it seems there are individual differences when tolerating supplements.

PinkPanda, your input on Choline affecting cysteine seems VERY close to me!!! The pathway that provides negative feedback on this is blocked perhaps? I have used N-Acetyl-Cysteine (NAC) multiple times but it made me feel awful. It raised my blood pressure and anxiety a ton, didn’t feel safe, and made me feel much worse.
 

joejack102

Senior Member
Messages
133
If you are having some sort of emergency I'd advise you to talk to doctors not random forum members, what did the doctors tell you ?

Are you aware this methylation cycle theory was really just a proposal by Rich van Konynenburg, there is so far little supporting evidence beyond anecdotes and an arguably plausible hypothesis of the mechanism by which it could work.

If I don’t have some genetic pathway block, I would assume the negative effects of Choline would have stopped when I discontinued it. But they didn’t. And if it’s not a genetic pathway block of some kind, I don’t know where else to look for an explanation? Suzy Cohen, the pharmacist, has a ton of articles about methylation too. And it seems a ton of people with our same medical condition have MTHFR or other Polymorphisms in our DNA upon testing. Several people have sent in their DNA to 23andme and have found abnormalities revolving around this it seems. I’m open minded though, and I am open to any possibilities.
 

overtheedge

Senior Member
Messages
258
I do think a doctor is needed but not like an ER doctor. If you think it's methylation you could go after any local doctors in your area who deal it, maybe look for local doctors who know about chronic fatigue, choline, and or methylation. Hopefully you’ll be able to find one who has a good bit of experience and may have run into a similar problem and so know what to do. Call around and see what you come up with, if not, you might look online for a more distant doctor who could do a phone consult with you, maybe some of the members on here could point you towards a doctor who has particular experience dealing with choline related stuff as I only know my local doctor, the only thing is that alternative practitioners usually cost a decent amount unless your insurance covers their stuff so heads up, if you do a phone consult talk fast and don't waste words, write down the stuff you want to talk about in advance and all
 

joejack102

Senior Member
Messages
133
Overtheedge, I could use help getting pointed in the right direction. Seems like I can't find a doctor who knows about methylation and this stuff. Seems like no medical professionals know about this stuff.
 

NotThisGuy

Senior Member
Messages
312
PinkPanda, your input on Choline affecting cysteine seems VERY close to me!!! The pathway that provides negative feedback on this is blocked perhaps? I have used N-Acetyl-Cysteine (NAC) multiple times but it made me feel awful. It raised my blood pressure and anxiety a ton, didn’t feel safe, and made me feel much worse.

this could be because NAC raises histamine.
It can also be that you actually have too much cysteine and getting homocysteine into methylation is exactly what you want to do and not letting it drive to cysteine.
 

joejack102

Senior Member
Messages
133
this could be because NAC raises histamine.
It can also be that you actually have too much cysteine and getting homocysteine into methylation is exactly what you want to do and not letting it drive to cysteine.

I'm convinced my histamine is very low, because I used to have extreme seasonal allergies before Choline back when I was super-sensitive to meds. And I haven't had any allergies since Choline was used. Under your hypothesis, what should I be taking supplementally to reverse my problem?
 
Messages
366
Many substances are very important in theory but I don't tolerate them well, like NAC, I don't tolerate that either. The thing I had most success with until now are certain unactivated, single b vitamins (and minerals).

I think some processes are very important, like glutathione synthesis, the energy metabolism (pyruvate dehdrogenase, fatty acid oxidation), methylation, and I try to find cofactors for these processes that at the same time have a calming effect and don't overly activate stress secretion.
Vitamin B2/riboflavin supports glutathione and is a cofactor for the MTHFR enzyme, B3/niacin helps glutathione synthesis and can reduce adrenaline levels. It can decrease methylation though (this can raise histamine).
I have better experience with sublingual hydroxcobalamin than other b12 forms, I think it's better not to take activated forms because those might 'do too much' and deplete minerals more.

I started taking vitamin B5/ Calcium Pantothenate again. It is very important for the energy metabolism because it forms Coenzyme A/ CoA-SH which becomes a part of acetyl-CoA.
Sometimes, I also take magnesium and vitamin B1, but I don't tolerate vitamin B1 well mostly..

So I have this very minimalistic approach at the moment, because I feel almost everything on top of that depletes those for me relevant cofactors again. I can just recommend what I'm doing at the moment, B2,B3, hydroxoB12 (magnesium), and now trying B5. I don't really have other ideas on supplements and don't tolerate most other supplements :D

There also seem to be individual differences on how well you tolerate b vitamins, which I think makes sense. For example, if you don't have any MTHFR mutations but always high B12 requirement, you might not tolerate B2 that well. And I take rather low doses of everything. So I would consider carefully trying some of these vitamins alone and see how you tolerate them.
 

joejack102

Senior Member
Messages
133
Thanks again for your reply @PinkPanda. What so frustrating is that I have literally tried all of those to no avail. There is something out there that counterbalances Choline in these "cycles" to counter-regulate the rate of methylation, and nobody seems to have found it.
 
Messages
366
I've encoutered this too, that a supplement I took rid me of a symptom but then caused a negative change in my state. If choline helped with medical sensitivties, then you where possibly too low in choline or methylation before? Yet supplementing choline might have depleted other cofactors which could lower your energy.

Otherwhise you have to elaborate on what you mean with conterbalance to choline and regulating methylation.
There are regluating mechanisms in the methylation cycle.
There is a 'feedback inhibition' from SAM to SAH, which stops SAH production when SAH gets too high ( Ijust saw that enzyme requires zinc. Have you treid zinc?).
Also, SAM can block MTHFR function, so that stops MTHFR, when SAM levels get too high.
And Niacin reduces SAM but you already tried that.
 

joejack102

Senior Member
Messages
133
Yeah @PinkPanda, it seems there is something missing. Because Niacin and SAMe did not solve this problem. I tried extensively with those (separately). But I agree that it appears that I was a low-methylator before and choline made me a high-methylator. But somehow just altering how many methyl groups I have in my body isn't actually slowing down the methylation. I think something is missing from all of those methylation charts.
 
Messages
366
You know that copper is a cofactor in methylation? They don't always write that.
Edited: There was some complicated mechanism on how copper can affect methylation but I can't remember right now. Something with, too much copper can also inhibit enzymes?
Definitely wouldn't take copper, but copper binding might be affected?
 
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NotThisGuy

Senior Member
Messages
312
freddd always says not tolerating anything might be a Problem with the deadlock Quartett.

You can try carnitine-fumarate allthough very very catious.
I would tackle the B12 front again.
Try hydroxo and look how you feel.
If it makes you worse I would try again a liquid methylB12 or adenosylB12. Also maybe a low dose B1,B2,B3,B5,B6, Biotin Supplement in equal dosage. (or a high dose and just take a Little)
Personally any unactivated B12 destroys me (heavy Depression,anemia, mast cell madness, brain fog, severe fatigue etc.)
But everyone is different.
 

joejack102

Senior Member
Messages
133
Up to this point, I've been experimenting with every ingredient and vitamin under the sun out of pure guessing without any real scientific or medical understanding as to why Choline made me less sensitive. I've got to stop guessing (and making myself more sick) and have something with a reasonable theory. I've tried B12, both Methyl-B12 and Cyanocobalamin many, many times with no relief at all. I'm sure I would have felt at least something positive or at least 10% better if I was on the right track before. And it did nothing positive. It doesn't feel like a vitamin, even in super-high amounts will reverse this. There is some ingredient in the body-brain that was down-regulated from Choline.

I think this chart holds the answer, but I wish I understood it better.
Folate%20Cycle-latest-sm.jpg
 

joejack102

Senior Member
Messages
133
Can somebody help me reach out to researchers, doctors, anybody who might have this knowledge? I'm extremely scared I might die if I cannot figure something out. My symptoms are very severe.
 

joejack102

Senior Member
Messages
133
Vitamin B2/riboflavin supports glutathione and is a cofactor for the MTHFR enzyme...

...you might not tolerate B2 that well. And I take rather low doses of everything. So I would consider carefully trying some of these vitamins alone and see how you tolerate them.

I've tried the others, but I have not yet tried Vitamin B2 (Riboflavin) until just moments ago. Did you have any side effects?
 

overtheedge

Senior Member
Messages
258
The only doctor I can personally vouch for is Dr. Stephanie Cave who has a clinic near the baton rouge area of louisiana, I know she does phone consults but if you wanted to get in with her you might have to go see her in person the first time, though, even if that turns out to be their policy you may be able to get them to make an exception since you're real ill and possibly far away, the clinics number is 225-767-7433. She is a doctor who has a good bit of experience in all sorts of things, deals with a lot of autism patients but cfs patients too, I know she works with methylation though I'm not exactly sure how much she deals with it. She is expensive so be prepared for that if you go that route

Alternatively you might use this websites search function to find out what kind of doctors people recommend, I'm sure there are a lot of posts about doctors here as I have run across numerous posts discussing doctors in my short time as a member of this website, you might come across some organizations/websites that would point you toward a good doctor in your local area if you look at enough posts. Other posters correct me if I'm wrong but the kind of medicine we're dealing with on this website would mostly fall into the realm of Functional and Integrative, maybe search for doctors of that sort and see what the internet has to say about them
 
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joejack102

Senior Member
Messages
133
I will try Dr. Cave, but is there not anybody on this entire forum who has taken something that increased their sensitives?

What did the Choline do? And how do I reverse it? This still isn't solved!
 

joejack102

Senior Member
Messages
133

overtheedge

Senior Member
Messages
258
hmmmm, I've done chelation for a good bit in the past, don't think it did anything immediately noticeable for me, my health overall went up during that time though, yet, I was taking a lot of supplements besides so I can't tell you what specifically helped , might not have been the chelation at all but I have improved my health overall under her care. I read the link, Dr. Cave does IV vitamins in between every 3 or 4 chelation IVs to prevent harm; my typical kindney blood markers were tested after all the chelation and were normal

Not really sure about the mayo clinics handling of chronic illnesses, I have heard that they have recommended mostly mainstream stuff for CFS like GET which is now a therapy no longer recommended by at least the CDC and has an overall bad reputation among posters on this board from what I can tell. I can't say much though on the mayo clinic beyond that, I see posts every now and then about it around here so searching this site would probably make the end results of their handling of chronic illnesses clearer

there's no doctor I agree with 100% but I'm a patient and I can't see into their lives and tell what the results of their use of medicine have been, haven't had the time and experience of dealing with many cases of CFS, I just have my own case and in general I've had better luck going to doctors than treating myself. If you're interested in using a doc it doesn't have to be dr cave, just someone with experience in dealing with the kinds of medical problems you have

that's my take on things anyway,
all the best