MTHFR homozygous but can't take B supplement - help needed

[Kadar]

@Kadar , you should be able to send messages now. Try again, and let me know if you continue to have a problem. I'll be happy to help!

Yeah, now I see. Thank you!
Hope drmullin30 will reply here or inbox

 

[drmullin30]

Hello. I wanted to send you a message but I'm new here for 2 weeks and still don't see any "message" button. I too have MTHFR 1298 homozygous and saw some of your messages about your experience. I wanted to ask, how did you know that you needed more molybdenum to help with heavy metals burden? And how you felt that it works, your potassium need decreased? Please, share your experience. Almost all of methylation supps made me worse, so now I only take Alpha lipoic acid every 3 hours and potassium (12+g, yeah it's terrible). I also just checked my thyroid hormones, it looks like hypothyroidism and I have high antibodies (guess it's because of heavy metals)

Hi Kadar,

I am very careful with ALA as it will definitely move mercury around (potentially into the brain) and it sounds like you have some toxicity but if you're taking it every 3 hours you're using the half life It's also high in sulfur so it may also increase the need for molybdenum.

The way I learned about my molybdenum deficiency is because I learned I had CBS and BMHT SNPs which cause me to have problems with sulphites and sulfates. I measured these in my urine as very high. You can use urine test strips to check your sulfate status. Since mine was very high and I had copper toxicity I learned I needed molybdenum. When I started taking the high dose molybdenum I immediately felt less anxious and less brain fog, more energy etc. and my urine sulfates dropped significantly. Increasing methylation increases SAMe production which in susceptible people like me (CBS BMHT) increases the need for molybdenum.

You can learn all about your genetics and the implications by taking your genetic information (23 and me) and going to websites like livewello.com and nutrahacker.com. This will help you navigate around treatment conflicts like this.

 

[Kadar]

Hi Kadar,

I am very careful with ALA as it will definitely move mercury around (potentially into the brain) and it sounds like you have some toxicity but if you're taking it every 3 hours you're using the half life It's also high in sulfur so it may also increase the need for molybdenum.

The way I learned about my molybdenum deficiency is because I learned I had CBS and BMHT SNPs which cause me to have problems with sulphites and sulfates. I measured these in my urine as very high. You can use urine test strips to check your sulfate status. Since mine was very high and I had copper toxicity I learned I needed molybdenum. When I started taking the high dose molybdenum I immediately felt less anxious and less brain fog, more energy etc. and my urine sulfates dropped significantly. Increasing methylation increases SAMe production which in susceptible people like me (CBS BMHT) increases the need for molybdenum.

You can learn all about your genetics and the implications by taking your genetic information (23 and me) and going to websites like livewello.com and nutrahacker.com. This will help you navigate around treatment conflicts like this.

I've only checked folate-connected snps year ago, unfortunately I haven't financial opportunity to check more genes now. But from your words I see I might me low in molybdenum even if I havent another mutations. About ALA - I tried to stop taking it but my potassium need increased even after 2 weeks it continued, so I decided to continue Cutler protocol non-stop. Yeah, i know its not wise, but I already take too much potassium and 2x need of it is horrible to take (powder with water). I guess testing minerals in blood is a bad idea, it doesn't show how much of minerals are in cells.So thats why I asked about molybdenum symptoms. What your opinion on hair test, did you done that? I'm now afraid to take anything connected to methylation because of potassium need, but I have to figure out what will help, not make worse. From your messages I want to focus on selenium, iodine, molybdenum, coffee enemas, as we have similar experience.

Thank you for your answer!

 

[drmullin30]

Personally I find hair tissue mineral analysis is way too slow for the developments associated with the advanced methylation protocol to be of any use. I did TMA years ago which revealed my copper toxicity.

One question, if you are having major problems with potassium, have you checked your oxalate status? Oxalate toxicity can cause major potassium deficiency along with magnesium and calcium. This article discusses all of the potential problems: https://www.urologyofva.net/article... bonds of,release all this oxalate painlessly.

If you have methylation problems, you almost certainly have stored oxalate and will begin dumping it on the protocol unless you eat a high oxalate diet. I have recently discovered that I have a problem with oxalates so I've switched to a low oxalate diet and have had oxalate dumping symptoms. One of which is calcium and potassium deficiency as well as sodium deficiency. I wonder if your response to ALA is related to that? ALA is a chelator and chelates all minerals so it could be exacerbating an oxalate problem.

As far as minerals go, I use this website: https://acu-cell.com/index.html and go by deficiency and toxicity symptoms. Each mineral listed has an excellent discussion, doses, and symptoms of overdose and deficiency. This has been my go to resource to figure out my symptoms as I progress through the protocol.

I can't stress enough how much easier things got once I had my genetic profile because I was able to understand my issues and treatment conflicts on the protocol and compensate for them.

 

[Kadar]

Personally I find hair tissue mineral analysis is way too slow for the developments associated with the advanced methylation protocol to be of any use. I did TMA years ago which revealed my copper toxicity.

One question, if you are having major problems with potassium, have you checked your oxalate status? Oxalate toxicity can cause major potassium deficiency along with magnesium and calcium. This article discusses all of the potential problems: https://www.urologyofva.net/articles/category/healthy-living/3740469/the-damaging-effects-of-oxalates-on-the-human-body#:~:text=helps weaken in bonds of,release all this oxalate painlessly.

If you have methylation problems, you almost certainly have stored oxalate and will begin dumping it on the protocol unless you eat a high oxalate diet. I have recently discovered that I have a problem with oxalates so I've switched to a low oxalate diet and have had oxalate dumping symptoms. One of which is calcium and potassium deficiency as well as sodium deficiency. I wonder if your response to ALA is related to that? ALA is a chelator and chelates all minerals so it could be exacerbating an oxalate problem.

As far as minerals go, I use this website: https://acu-cell.com/index.html and go by deficiency and toxicity symptoms. Each mineral listed has an excellent discussion, doses, and symptoms of overdose and deficiency. This has been my go to resource to figure out my symptoms as I progress through the protocol.

I can't stress enough how much easier things got once I had my genetic profile because I was able to understand my issues and treatment conflicts on the protocol and compensate for them.

Hmm, interesting...I'll get deeper about oxalates. Thanks for such helpful links I hope I'll find urine test strips for sulfates in russian drugstore. And, about oxalates. If yes, are there any supplements beside diet? I cannot believe yet that only diet would shorten potassium need tremendously.

 

[drmullin30]

For oxalates I increased calcium and magnesium intake as well as lemon juice. Citric acid disolves oxalate deposits.

Don't dismiss diet! It has been the single most important factor in my recovery, going gluten free and dairy free. Most of the serotonin in your body is made by bacteria in your gut flora. There is a massive connection between a healthy gut biome and mental health so the food you eat is the most important factor in health.

Oxalates are also a perfect example. If you do some research you'll be amazed at the health conditions that have been cured through diet examples include gluten free, dairy free, low-oxalate, low salicylate, and ketogenic or all the way to the carnivore diet. I have implemented many of these diet strategies with success.

 

[YippeeKi YOW !!]

What I'm trying to understand is why I've suddenly become reactive to things I used to be able to tolerate, such as healthy foods and my B supplement (it was Swanson). I'm trying to get my body to accept some starting dose of the new methylated supplement, however small, because it feels like that's what I need? Am I wasting my time? Should I tweak it or try something else?

I had the same response. It seemed sudden, but after checking back thru my sporadic notes, it clearly had been creeping up on me til it became unignorable.

Almost overnight, I had to start discarding things that I'd been eating all my life, til I was down to mozzarella or string cheese, water, a protein drink with hemp powder, and an organic semi-fresh veggie juice. My usual multi-vit proved problematic, as did any kind of B vitaming.

Very quickly, the protein powder and hemp were pulled out of rotation, and a hellish period ensued in which I was literally just willing myself to keep putting one metaphorical foot in front of the other, while trying to muster the brain power, by now severely affected by the trademarked fatigue and fogginess, to do research. I hadn't found this site yet, and was still a couple of years away.

I was living pretty much on air and water, and having increasingly intolerable, wrenching, endlessly long panic/anxiety attacks, together with seriously bad sleep problems, chest pain, pounding erratic heart, what I call marionette muscle responses, PEM, POTS . Life was ..... not fun.

Slowly, after givng up on getting any meaningful help from the medical community, I found a few things that helped me: small amounts of potassium thru-out the day, mini-doses of magnesium glycinate at very tight intervals, sometimes as frequently as every 35 mins, but usually 45-6o minutes apart, sometimes with tiny doses of melatonin which quieted the heart issues a bit and started to reduce the extreme anxiety.

Jumping over all the other stuff I trialed that failed, sometimes spectacularly, I started testing out desiccated liver from grass fed New Zealand cows, which helped supply a lot of the nutrition I wasn;t getting anywhere else, which moved me forward another few steps. By that time I'd founf this site, and was frantically tryng to absorb as much from the heavily-science oriented threads as I could.

Try taking hydroxycobalamin instead of methylcobalamin. Also take it by itself, not in a complex. I don't tolerate complexes, but can take hydroxycobalamin separately.

This was a total fail for me. But we're all different.

I also used Acetyl-L-Carnitine from the beginning as it really helped my energy and brain fog.

Also bit me bigly on the butt. I may try it again when I screw up the courage to tamper with 'well-enough', or actually, 'OK enough' ....

You might need any of the following if you are firing up your methylation "circuitry" and creating a refeeding situation in your metabolism: potassium, calcium, magnesium, sodium, phosphorus, copper, zinc, boron, iodine, molybdenum, selenium, Omega 3, vitamin C, vitamin D. For me, chest pain is often a symptom of potassium or calcium deficiency.

I relied heavily on the mag gly, and, having hypothyroid problems, tried to add in selenium and a few other things, with very unpleasant results, so I backed off. Ditto molybdenum. Almost anything sulfur-based or connected has unfortunate results, still.

I've gradually added in small amounts of selenium, copper, zinc, boron, and I've cont'd the mini dosing of mag gly but at wider intervals, along with fairly large amounts of Vit C, and have been able to gradually add back Vit D (which also turned on me initially), MK-7 and 4, and also have expanded my food groups a bit.

I made the mistake of revisiting some of Fredd's posts here and they've always terrified me.

They absolutely petrified me, and left me feeling that I'd never be able to get a handle on any of this, and all was lost, everything was hopeless.

So I did what any smart 5 year old would do: I avoided those threads.

The learning and tweaking really never stops for people like us.

It's a nightmare. And every time that you feel that you've got a handle on this vicious little puff-adder of an illness, it transmogrifies into something else that requires a whole new skill set to deal with. But that does slow down, giving some breathing room...

I'll update this thread with how I'm doing, but I admit I'm scared a lot of the time. I get SAD and it's worse this year than it's ever been - this country (UK) is so dark and cloudy in the winter.

I hope that now that the weather has changed, you're doing better, and I look forward to following you progress in this thread.

go slow, only change one thing at a time and listen to your body. Just because it works for one person, doesn't mean it will work for you. Hang in there.

Excellent advice: start low and go slow, and know that what works for others may not work for you, or may need a lot of tweaking to work for you.

The Acu-Cell site is terrific, and I relied on it heavily early on. @Gondwanaland had posted a link in her signature, and I referred to it constantly. And then suddenly, it stopped allowing the use of the 'Read More' button that appears very early in the info on any of the vits and minerals pages (or any other), and became kind of useless. I stopped checking it out. I just tested it using the links provided here, and it still won't permit viewing of the whole, long, informative pages. Is anyone else having this problem?

Am going to try to check it out on another browser and see if that's maybe the issue. I know I'll have to give up on my much loved IE 11, but for now, they'll have to pry it out of my cold, stubborn hands.

Keep on keepin' on @Kitsune. I'll be checking back for progress reports, and wishing you rapid and happy progress .

 

[Gondwanaland]

The Acu-Cell site is terrific, and I relied on it heavily early on. @Gondwanaland had posted a link in her signature, and I referred to it constantly. And then suddenly, it stopped allowing the use of the 'Read More' button that appears very early in the info on any of the vits and minerals pages (or any other), and became kind of useless. I stopped checking it out. I just tested it using the links provided here, and it still won't permit viewing of the whole, long, informative pages. Is anyone else having this problem?

If you are on a computer, just place the mouse pointer over the "Read more" button without clicking on it and it will allow you to read further down the page

 

[YippeeKi YOW !!]

If you are on a computer, just place the mouse pointer over the "Read more" button without clicking on it and it will allow you to read further down the page

Thank you @Gondwanaland !!! Will give it a try. I really loved that site, and silently thanked you for posting the link in your signature on an almost daily basis. It's a terrific reference ....

Hope that you're doing as well as this endlessly draining little anthill of an illness permits ....

 

[YippeeKi YOW !!]

If you are on a computer, just place the mouse pointer over the "Read more" button without clicking on it and it will allow you to read further down the page

I tried that. Nothing.

Then I tried the site in my Chrome browser, still nothing.

I noticed that Acu-Cell is no longer offering their testing services, and that might have something to do with it. While they're letting the site stay open, they're not updating it or supporting all the functions.

Have you tried it lately? Did it work for you? If it did, I'll have to default to , "The universe is an arbitrary, inexplicable force, and now I'll have a cookie ...."

If you have any other thoughts, I'd be grateful. I've run thru my little basket of fixes, including going into my system to see if some action from a Microsloth update may have affected it, but I cant find anything that looks like it might apply.

I really miss that site !!!

 

[drmullin30]

Hi Yippee, the website works for me so if there are specific sections you want I could copy and paste them in an email to you.

Let me know.

 

[YippeeKi YOW !!]

Hi Yippee, the website works for me so if there are specific sections you want I could copy and paste them in an email to you.

Let me know.

You're extremely sweet, and I'd take you up on that, except that the range and degree of information that I used to access from that site is so voluminous that you wouldn't have time to do much else .....

And I really need to figure out why a site that seems to be working just fine for others is flipping me off every time I try to access it.

I know you probably posted it above, but I'm not firing on all cylinders today, so if it isnt a huge hassle, could you post your link to Acu-Cell? Maybe mine is corrupted in some mysterious cyber-malevolent way ...

No rush. And thank you again for your kindness, and for your extremely generous offer !!!

 

[drmullin30]

Here you go: https://acu-cell.com/index.html

 

[YippeeKi YOW !!]

Here you go: https://acu-cell.com/index.html

Oh wow !!!! Speedy !!!!

Much appreciated. Let's see if this helps .... will get back here and let you know ....

 

[YippeeKi YOW !!]

@drmullin30
Sadly, no difference .... I cant activate the 'Read More' button no matter wht I do: hover, click, click and hover, scroll click and hover, search for 'page 2' ....

Nothing works. I'm baffled.

Thank you so much for trying to help, it's much appreciated ....

 

[drmullin30]

The next thing I would try is re-install your browser.

 

[YippeeKi YOW !!]

The next thing I would try is re-install your browser.

I thought of that, and if I were having the same problem on any other site I'd go thru the tedium and the inevitable losses of sites, tabs, and even Word docs (I know, they tell you they're secure .... my experience, having gone thru the process, along with various resets, several times, is that they're not), but absent extreme pressure, my fatigue and innate laziness kicks in ...

This is really baffling. It's only the Acu-Cell site, it happened suddenly and without warning after a year or so of trouble-free access, and if it werent for the fact that it IS only one site, I'd happily blame the bozos at Microdrip and one of their devilish, vicious little updates ... I may contact them about this anyway, if I have a good enough day to sustain the inevitable frustration and endless explanations, transfers to another 'expert', more explanations, another transfer, more 'hold' time, etc ....

Thank you again, and if anything else comes to mind, gimme a holler, yes?

 

[drmullin30]

You might also try just deleting all cookies and history. I imagine that's how the continue reading button works. Also play with pop-up blocker and ad-blocker settings maybe. It sounds like either you have a bad cookie or a setting is out of whack in your browser.

 

[YippeeKi YOW !!]

You might also try just deleting all cookies and history.

I do that pretty much every day, either right after I start up or just before I shut down ....

Also play with pop-up blocker and ad-blocker settings maybe

I use a system that automatically blocks all of just about verything .... which is a drag when I have to disable it, because I have to restart after I enable security settings or I get an effing hailstorm of pop-ups and flashing ads....

It sounds like either you have a bad cookie or a setting is out of whack in your browser.

I've been into settings and cant find anything that looks like a likely culprit, but then I'm hardly an IT expert ...

Your suggestions are really good, and I think they've aimed me at the IT dept of my cyber security system. It does sound like the security system on my PC might be blocking AcuCell in some bizarre way, while leaving everything else untouched.

I really, really, like, REALLY hate the 21st century, at the same time that I can't live without its innovations and improvements, leaving it hard to find a target for bitching and moaning vents ....

Thank you for your input. It's really helped my three brain cells roll over slowly and actually do something ....

 

[Sophiedw]

I do that pretty much every day, either right after I start up or just before I shut down ....

I use a system that automatically blocks all of just about verything .... which is a drag when I have to disable it, because I have to restart after I enable security settings or I get an effing hailstorm of pop-ups and flashing ads....

I've been into settings and cant find anything that looks like a likely culprit, but then I'm hardly an IT expert ...

Your suggestions are really good, and I think they've aimed me at the IT dept of my cyber security system. It does sound like the security system on my PC might be blocking AcuCell in some bizarre way, while leaving everything else untouched.

I really, really, like, REALLY hate the 21st century, at the same time that I can't live without its innovations and improvements, leaving it hard to find a target for bitching and moaning vents ....

Thank you for your input. It's really helped my three brain cells roll over slowly and actually do something ....

Ty connecting through a vpn Yippee or the tor browser or alike. There’s nothing that should stop you accessing the site then. By the way when I’m reading on this forum I really laugh at the way you always have a different descriptive phrase for the disease (puff-adder) etc. Very creative! Xx