I'm so scared; am I doing the right thing?

[NilaJones]

Hello folks. You don't know me, because I mostly lurk. But I have been doing the methylation protocol, minus much B12 (still trying to find a route around the exitotoxicity) and it's done wonders for me.

But my doc (a GP, not a ME doc) wanted me off the folate for 3 days this week in order to run blood tests, with the draw scheduled for noon tomorrow.

Sunday was my first day off, and I was ok on Sunday and Monday, but today I am in really bad shape.

And I am so scared of a relapse. Is there any chance that being off the folate for 3 days could trigger that? Will I be ok once I start taking it again tomorrow afternoon? I am so tempted just to go take some right now because I am terrified. Can anybody reassure me -- or tell me to go for it?

I have tears in my eyes, typing this. I know you all will understand how scary the idea of getting worse is.

 

[SOC]

I think the stress of worrying about it might be worse for you than the loss of the folate for 3 days. You may feel crummy, but I doubt 3 days without folate will cause a major crash. Give yourself plenty of rest for a while and try not to worry about a relapse. It never hurts to take care of yourself a bit extra, so do that while you're going through the folate adjustment. Rest and relax, if you can, and try not to worry.

 

[snowathlete]

Hello folks. You don't know me, because I mostly lurk. But I have been doing the methylation protocol, minus much B12 (still trying to find a route around the exitotoxicity) and it's done wonders for me.

But my doc (a GP, not a ME doc) wanted me off the folate for 3 days this week in order to run blood tests, with the draw scheduled for noon tomorrow.

Sunday was my first day off, and I was ok on Sunday and Monday, but today I am in really bad shape.

And I am so scared of a relapse. Is there any chance that being off the folate for 3 days could trigger that? Will I be ok once I start taking it again tomorrow afternoon? I am so tempted just to go take some right now because I am terrified. Can anybody reassure me -- or tell me to go for it?

I have tears in my eyes, typing this. I know you all will understand how scary the idea of getting worse is.

Yes we can certainly understand how you feel. Try not to worry, I suspect you'll be fine waiting until tomorrow before taking the folate again - doubt there will be a lasting problem once you're back on.

 

[NilaJones]

Thank you, both )). And yes, SOC, I have been doing nothing for the past two days. That's how I know it is bad -- doing nothing and feeling worse instead of better.

I do think being emo is symptom of no folate :/. I freaked out, Sunday night, over something that I am still not sure I am thinking straight enough to know if it was really that big a deal or not.

But getting upset over anything, even if it IS a big deal, is weird for me. My official diagnosis is HH6 encephalitis, and flattened affect is a pronounced symptom for me.

Normally (since being sick) I am just so mellow, and mildly content, all the time. I am, like, zen lady .

 

[NilaJones]

The B12 also, when I have tried taking it, tends to make me emo.

Of course, after years of flattened affect, I may not know the difference between emo and just normal.

 

[Freddd]

The B12 also, when I have tried taking it, tends to make me emo.

Of course, after years of flattened affect, I may not know the difference between emo and just normal.

Hi NilaJones,

I may not know the difference between emo and just normal

You could say that 1000 times and still not be enough. My suggestion is to get rid of the language of FEAR, ;like "excitotoxicity". While that may actually happen on rare occasion, normally it is applied to methylation startup and ATP startup which are exactly those things needed to actually heal. It is the language of fear that keeps many from healing. Flattened affect is often an effect of b12/folate deficiency. During neurological healing it can go very much the other way before ending up at the happy medium.

 

[NilaJones]

Thanks, Freddd, and for ALL your fabulous work here. (Methylation has been a godsend!)

I may be using the word wrong. When I said 'excitotoxicity', I meant a feeling of not being able to restrain myself from doing what I know, intellectually, is going to be too much activity, and then being worse the following days because of doing too much.

Even 1/12 of a Perque does this to me, worse if I take it two days in a row (worse the second day). Any suggestions? That much B12 also leaves me needing 4 potassium a day for a week now, since the two day run of B12. So it is doing stuff .

 

[Misfit Toy]

Interesting, I just started B12 shots and now...I am frightened after what I am reading. Only 3 times a week. Haven't started the methylation protocol. Waiting for 23 and Me results.

 

[Freddd]

Thanks, Freddd, and for ALL your fabulous work here. (Methylation has been a godsend!)

I may be using the word wrong. When I said 'excitotoxicity', I meant a feeling of not being able to restrain myself from doing what I know, intellectually, is going to be too much activity, and then being worse the following days because of doing too much.

Even 1/12 of a Perque does this to me, worse if I take it two days in a row (worse the second day). Any suggestions? That much B12 also leaves me needing 4 potassium a day for a week now, since the two day run of B12. So it is doing stuff .

Hi NilaJones,

Regarding "excitotoxicity" it's a definitional thing. For instance, glutamate in the brain in excessive amounts is so excitatory to the neuron that it is toxic and kills the neuron by extreme over excitement. MeCbl protects against glutamate excitotoxicity. The number one reason I had for setbacks for the first 2 years was "overdoing" because how I felt far outran the physical improvements. There was no warning that I was approaching "too much". I had no basis for anything after 30 years of deterioration. It happened suddenly without warning. It took me more than 5 years to find how to allow nutritionally, muscle to regrow after decades of deterioration. So in that, you are completely normal, or at least typical. These deficiencies hit all sorts of mood and personality characteristics including executive function.. Everybody who is ill with these neurological afflicting deficiencies and heals goes through it. Further Then one day enough healing had occurred to not overdo it. When I regained exercise tolerance I could build capacity. I started out able to walk 500 feet. Each day I increased that by 1 driveway in a suburban area, about 50-70 feet depending which street. It took me a year to build up to 5 miles.

You may be having some conversion to AdoCbl and are firing up ATP as well as methylation. That is just "energy" that makes us feel like we want to "get going". We notice differences, percentage differences. If one is putting out 1% above "staying alive" levels of ATP and increases that to 2% it is a huge 100% difference. Going from 99% to 100% is not even noticeable even though it too is 1%. Keep it going. It sounds like healing has started. The sensations will fade allowing you to titrate the dose upwards and get more healing going and so on.

The going is easier if one chooses descriptive words that are not scary.

 

[NilaJones]

So I just had the blood draw, and it turns out I have to do a 24 hour urine collection for N-methylhistamine and prostaglandine-D2. Does this mean I have to be off the folate and B12 for another 24 hours? And is that still safe?

--

Freddd: I did not think of excitotoxicity as a scary word . Do you prefer 'speedy'? Is there another term? All I meant was, I am trying to find a way to take B12 that does not have the result of me doing too much and then being sicker the following day/s. Any suggestions? I thought I might try liver, if I can find organic.

@Spitfire: If you have not had any bad reaction to the shots, maybe there is no need to worry?

 

[NilaJones]

Argh, it is frustrating dealing with unusual tests! No-one knows how they work.

My doctor is out of town until Monday and has no sub. I talked to 4 people at the testing lab and none of them knew anything.

They also were unable to tell me whether it will be a problem that I am on my period and some blood will be getting into the sample. Anyone know the answer to that?

It doesn't help that I am 100 times more fuzzy-headed due to being off the folate . I keep thinking that there are probably obvious paths that I am missing.

Newbie note: I posted this in both the methylation and mast cells forums, because I am not sure whether the same people read both, or who I should be asking. I'd love feedback on whether this way the right way to go, or annoying .

 

[Freddd]

Argh, it is frustrating dealing with unusual tests! No-one knows how they work.

My doctor is out of town until Monday and has no sub. I talked to 4 people at the testing lab and none of them knew anything.

They also were unable to tell me whether it will be a problem that I am on my period and some blood will be getting into the sample. Anyone know the answer to that?

It doesn't help that I am 100 times more fuzzy-headed due to being off the folate . I keep thinking that there are probably obvious paths that I am missing.

Newbie note: I posted this in both the methylation and mast cells forums, because I am not sure whether the same people read both, or who I should be asking. I'd love feedback on whether this way the right way to go, or annoying .

Stop and start the way you are doing it is often a disaster. The healing response falls away. The damage from stop and start gets worse and the oscillations get worse and worse typically. Why do you think it helps you by tirning off your neurons every few days just as healing is starting?

 

[NilaJones]

Freddd:

Yes, that is why I was annoyed when they extended the stop an extra day, and why I was stressed last night.

Given that I cannot change the past, what should I do now? I stopped on Sunday morning. Should I restart now, and will that blow the urine test but be the best move for my health? Or should I restart tomorrow at noon, when then urine collection is complete?

Thanks for your advice!

 

[caledonia]

I not an expert on urine tests by any means, but I've seen listed in a few different urine tests that I've done, not to do it while you're on your period.

I wouldn't worry about being off the folate/B12 for a few days.

 

[NilaJones]

Still don't know if I have to stay off folate for the urine tests or if it's OK to start taking it again.

Lab says the period thing is no problem.

 

[Freddd]

If they need it for the urine test, do it and you'll most likely be just fine. Good luck.

 

[NilaJones]

Thanks, folks . Only one more hour to go!

 

[Victronix]

Thanks, folks . Only one more hour to go!

I've gone off and on mfolate a few times not being able to cope with some of the effects and I can tell you that although it may be difficult, it won't be disasterous, and once you start again you will be fine. Mfolate and potassium have a big impact on the state of mind, I find, and you just have to work with it, know they are the cause and separate your *self* from the anxiety and fears.

Taking a LOT of potassium helps alleviate the anxiety, I find, and that will continue even after you stop taking mfolate. I take it as potassium gluconate powder, several times a day, at least 1500 mcg. Food potassium won't cut it.

I think one way to approach the tests is that the more you know, the better position you are in -- tests can come out with no out of range values and that's important to know, as much as high or low values are.

Also, you really want to be on B-12 if you are taking mfolate. Have you tried extremely small amounts? If you ramp up the potassium, the effects will become tolerable.

 

[NilaJones]

I was going to start a new thread to ask about B12, but is it better to do it here?

I find that even 1/12 of a Perque is too much. What should I do?

I think I could handle the 1/12 maybe once or twice a week, but I know Freddd feels going on and off is bad. Should I try an even tinier amount? Should I try food sources instead? I cannot find organic liver locally. Should I mail order some pate? Or am I wrong in being concerned that non-organic liver could have a high concentration of something exogenous to the animal that I will react badly to?

Yes, I haz a lot of questions :/.

--

Victronix: So, taking folate makes you emo? I think going off it had that effect on me. And taking B12 does. I have been back on the folate 2 days now, but no B12 yet (I figure I will wait for advice from y'all). I don't think I am back up to my previous energy level, but as soon as I started taking the folate again I stopped getting upset over stuff. Of course, nothing upsetting has /happened/, so this is not a scientific test. But I feel chill .

--

Thank you, everyone here, for your help .

 

[NilaJones]

Forgot to address the potassium --

I definitely need it with even tiny amounts of B12. I have been taking 4 of p glutamate daily, one per meal, plus eating three bananas daily, since the last time I tried tiny bits of B12. I could look it up, but I think that is the past 11 days. Today I moved it down to 2.5 tablets plus 2 bananas. It's hard on my gut, and that's a concern because I have had SEVERE stomach issues in the past.

I react badly to aspartate, so don't want that form of potassium.

I see that potassium citrate is available, but I've only found it in powder or capsule form. Is that worse on the gut, because of the all-at-once release, vs, a tablet that may dissolve over time? Or is citrate better than glutamate?

I'd love some feedback on this from others whose guts are sensitive to potassium.