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Need help with my mothers protocol

Messages
19
Hi everybody,

I need a bit of advice. My mother is really ill for at least 28 years. In 2013 we found out that we both have a b12deficiency.In october 2014 my mother has started Freddds protocol. She is taking per day:

MB12: 10 mg injections and 80 mg sublinguals ( a lot but she really needs it)
AB12: 50 mg sublinguals
Bcomplex: every other day
Vitame e: every other day
Vitame A: 4000 mg
Vitamine D: 10.000 IU
Magnesium
Zinc 60 mg
Potassium 12 tablets 99 mg

She has started methylfolaat two weeks a ago, really slow. Now she is one 3000 mg.
She is in pain the last few days, all parts of her body hurt. What could this be? Should she take more methylfolate, or more potassium? Is this just healing going on? Should she add something else to her supplements?

Thank you!

Greetings, Jodie
 

helen1

Senior Member
Messages
1,033
Location
Canada
Wow! It's not surprising your mom is having problems with this. This is not really slow, Jodie, this is really really fast. Most of us here have had to start with a tiny fraction of what your mom is taking and we've had to build up over the months, even a couple of years for some people, not two weeks. You might want to reduce everything to much smaller amounts, then build up much much more slowly.

Please read the links to Methylation protocols in ahmo and Caledonia's signatures, you'll learn about all the possible road blocks to success and much more.

It's wonderful that you're helping your mom. She's lucky to have you!
 
Messages
19
@helen1 .
Thank you for your answer!
Do you think she went to fast with everything?She just said: i want healing going on, so i add one supplement a week. She tried to do a smaller amount of mb12, but she became more ill! So we upped it again. She tolerates the supplements without any side effects, except for now the pain. But my mom is a tough one: even if she has side affects, she will push through.

Did you have improvements from this protocol helen?
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
I had a lot of hip pain when I upped my methylfolate too fast. @Martial had the same problem. I also had raging anger

I backed way down and started over raising my mb12 and adb12 really slowly. Once those were stabile I raised Mfolate by 200 mcgs. I'm holding here 4 mgs mb12 and adb12 and 800 mcg Mfolate for weeks. Also there is no set dose for potassium.

Faster is not better and pushing through side effects may be gutsy but doesn't necessarily make sense
 
Messages
19
@minkeygirl; i know. The probem is, she is so ill, its hard to say if its her illness or a side effect.

A raging anger can be because of to much methylfolate? I 've had that from folic acid!

I also have had to stop some supplements because i went to fast. And when I took a multivitamin things went really bad, so I know pushing through isnt always the best!
 

helen1

Senior Member
Messages
1,033
Location
Canada
@Jodie28 The big problem with getting methylation going too quickly is that we don't have enough glutathione to remove the toxins that are produced by the increased cellular activity. This is not good for the body whether you're tough or not.

Building up methylation slowly will also slowly increase glutathione levels, so that you can then handle the increasing rate of cellular processes.

Please please read the documents and watch the videos about methylation in ahmo's and caledonia's signatures if you haven't already done so. All the common errors that people have made (such as building up too quickly plus about 16 others) are there so that newcomers don't have to repeat the same errors as we've all done.

Yes, I've had some good progress with methylation. But am working on infections so progress has halted at the moment.
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
Many of us are very sick. That doesn't mean that powering through is smart and will make us feel better faster. It could have the opposite effect.

Methylation is a balancing act. You have to know what you are doing so you know how to fine tune things when necessary. Even as sick as I am, by going slowly and only working with one thing at a time, I can tell if it's s reaction to what I'm taking or just the disease. When I was raging mad, that wasn't me and the only thing I was doing was methylation.

The way you are doing things imo and others is not smart.
 
Messages
19
Thank your for all of your answers. I've read caledonia's signatures but I am still confused ( allthoug it are great documents!). I understand that sometimes we have to cut down a bit (or a lot), but on the otherhand I've read: sometimes you have to push through ( i've read when someone didn't notice good effect from 1 mg folate,upped it, and then with 3 mg folate it gave a good result). My mother didn't get any negative symptoms from the supplements;just the opposite: she got sicker when she tried to back down on the methyb12. So should she back down with alle the supplements? Or just the methylfolate? ( i forgot to mention before october she was already on vitamin D, b complex and hydroxob12.( hydroxo did not do much for her). So the vitamin e, A, zinc, magnesium she started slow (at least we found it slow...but i'll understand its not...) apart from each other since october, every 1-2 weeks a new one.. She upped the Mb12 really fast, I know that. But then again, here in the Netherlands there is a alternative doctor who describes 60 mg Mb12 and 60 mg Ab12 sublinguals per day just at once, so we just assumed it wasn't a problem.

I am a bit lost now....
 

whodathunkit

Senior Member
Messages
1,160
@Jodie28 , this is the main problem with trying to treat this yourself. People get confused and lost. It's a bit dicey trying to give advice because when things go wrong, people might blame you.

FWIW, I was one of the ones who "pushed through" and had very good results. Like your mom I respond very well to high-dose b12 (I take injections, too). About a year ago I upped my dosage of methylfolate very, very quickly and very radically. By radical I mean the first time I got sick/crashed after I started taking folate (which happened within 2 weeks of starting), I reacted not by backing off folate supplementation but by increasing it several mg/day until I stabilized at 40mg/day. Then I stayed at that dose for a long time (probably about six months). 40mg/day was how much it took to keep the really bad side effects at bay.

I had a lot of ups and downs doing it this way, though. I got sick/crashed a couple times. Had physical problems and had to constantly tweak dosages of potassium, zinc, salt (for my adrenals), and add in other minerals and supplements as well (like l-carnitine fumarate and the other form of B12, adenosylcobalamin). Sometimes I had to stop some supplements and then re-start them after the side effects calmed down. Some things I used only temporarily to quick fix some acute symptoms. I also worked through a lot of different psychological symptoms (jitteriness, anxiety, anger, processed some old trauma, etc.). It was hard physically and psychologically, plus a lot of work and a lot of reading/research. Also a little pricey. Not an easy road. But after every crash, I always bounced back feeling a little bit better than before.

Currently, about a year after committing to "pushing through" I'm doing very well and back down to a normal folate dosage of about 4mg/day. All dosages of everything are back down to normal levels, and I'm able to get the potassium I need from food. Still taking B12 injections, though. Not as much as your mom, but I love them and hope never to be without them again. :) I'm very thankful that I found @Freddd's protocol and Phoenix Rising. The protocol has been somewhat of a miracle for me. It wasn't the cure-all, and I'm still doing other things in hopes of getting better still, but for sure it's the foundation of health upon which I will build the rest of my life.

So if and ONLY IF you and your mom are committed to the course, AND you are willing to do the reading and work necessary to inform yourself, you might consider keeping on with the folate increase to see where it takes her.

If you decide to do this, please bear in mind that potassium supplementation can be crucial in the process of increasing folate, but too much potassium can also be dangerous, so you would need to educate yourself about that.

And sometimes the sides get to be too much. That's okay. Knowing when to say when, and when not to say when, is half the battle. Goes back to the old adage: Know thyself.

Not sure that's helpful. But it's an alternative view to some others in the thread. I haven't been diagnosed with CFS but I've come to realize after being here for a while and feeling better that I was in pretty bad shape. For example, I had pretty severe PEM for a long time, but didn't know it had a name or that it was a set of symptoms pointing to some dysfunction. I never even discussed it with my doctor because I just thought I was getting old and that it was my lot in life to endure it. I was barely functional (went to work and came home, that was all I could do) but thought that was just how it was going to be for the rest of my life.

I also don't know anything about my genetics or if I have any mutations that caused any of my problems. A lot of people here have some pretty bad mutations that interfere with their ability to make use of B12, folate, and other things. Getting a genetic profile done on your mom might be enlightening. Some people use genetic profile to help guide their supplementation regimen. I never got mine done primarily because of privacy concerns, but also because I'm very comfortable letting my symptoms be my guide to what I take. YMMV. I'm still considering getting genetics done, though, because I think it would be interesting.

Finally, if you've not had very much experience with supplements in the past, or haven't had much experience with how the course of healing can proceed when trying alternative methods, make sure you're prepped for some of the sides and the likely uneven progress you'll experience. Start by searching posts by @Freddd. Both the sticky threads at the top of this forum are also very good sources of info. @ahmo has a good document in her signature with the basics of the protocol.

Good luck and good health, whatever you decide. :)
 
Last edited:

aturtles

Senior Member
Messages
129
Location
Seattle, WA
@Jodie28
If you decide to do this, please bear in mind that potassium supplementation can be crucial in the process of increasing folate, but too much potassium can also be dangerous, so you would need to educate yourself about that.
Good luck and good health, whatever you decide. :)

Forgive me for bringing this up again -- I know I'm repeating myself here -- and I 'm not disputing that you're right, @whodathunkit , but my understanding is that fear of too much potassium is usually more of a danger than too much potassium.

I used to worry about taking too much and then an an accomplished nephrologist of my acquaintance assured me that if your kidneys are healthy it is nearly impossible to overdose on potassium. I told him I was taking many grams a day and he shrugged, and said he wasn't worried. The body goes through it in hours.

My personal experience bears this out: I can't consume too much of it. At worst, I waste it. More important to have it and use it than worry about consuming too much.

Better yet, learn your body's signals for needing it, and consume to need.
 

whodathunkit

Senior Member
Messages
1,160
my understanding is that fear of too much potassium is usually more of a danger than too much potassium.
Totally, TOTALLY agree.

But sometimes I worry that people won't "get" it about how dangerous it might be, especially if they're trying to help other people. The OP was about helping Mom, and Jodie can't know what Mom is actually feeling, and Mom may not be so self-aware to tell Jodie about symptoms. And if Jodie isn't aware that Mom needs to understand the symptoms are important, something crucial may get overlooked. You see where I'm going with this.
 
Messages
19
Thank you @whodathunkit and @aturtles for you answers.

Pushing things a little bit (or a lot) seems the way to go for my mother, I tell her to do it slow, but she feels her own body the best and it looks like she needs really high dosages . We had indeed to much fear of potassium, so at the beginning she took to little, not a good idea! We discuss all her symptoms every day, and look for what it can be. I know this isn't an easy road, but there is nothing else left for her to try, and she decided she wanted it to do this protocol, and with everything she tries.. she says.... woow,. Freddd is right again!
 

aturtles

Senior Member
Messages
129
Location
Seattle, WA
@Jodie28, glad for you and your mother! Feeling your own body's reaction is a key tool.

Speaking of using your body for guidance... I was never able to make muscle-testing work for me, so I've instead begun *tasting* everything I put in my body first -- opening capsules as needed -- to try to teach my body to tell me, by taste, if something is good for me, and how much. After all, using the tongue to decide if something is beneficial sort of seems like what it was designed for. :)