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Why do I keep getting worse?

garyfritz

Senior Member
Messages
599
As far as I know, I don't have ME/CFS. I always had low energy but I considered myself pretty healthy. I had RLS (restless legs syndrome) since childhood, and a nagging occasional problem with sleep for the last 20 yrs where I would wake with twitching muscles and agitation, but that was about it.

But over time I keep getting worse. The sleep issues got worse over time, and started migrating into daytime agitation, feeling almost like a constant fight-or-flight reaction. By last summer it was getting pretty bad, but fortunately my naturopath suggested B12. I started taking 500-1000mcg/day of Readisorb liposomal methylB12, and poof! All symptoms completely disappeared. It was miraculous. For 6 months.

The problems started coming back, and I found this place. I started boosting my mB12 up to 20mg/day, adding adB12 (4mg/day), methyl folate (4-5mg/day), LCF. I had the problem totally under control. I would generally sleep through the night. If I woke up I was generally agitated/twitchy and I couldn't go to sleep on my own, but if I popped a 5mg mB12 (Country Life) I would be asleep before it dissolved. That lasted another few months.

In the last few weeks I've been having more and more trouble. This past week was bad, and last night was terrible. I was awake 2-5am, agitated but not as twitchy as I used to be. I took 10mg mB12 and 2mg adB12 before I could relax enough to drop off. Got a few more hours of fitful sleep but I've felt crappy all day: achy, woozy, hyper-ish, exhausted, just yuck.

So apparently I need to figure out what I need to fix it this time. More mB12? More mfolate or adB12? I don't know. More importantly, I don't know how long the next fix will last -- or if I can keep finding fixes.

Why do I keep getting worse? Why can I find something that appears to fix the problem 100%, but it only lasts for a few months or weeks?

If B12 was a drug, I would say I was building up a resistance to it. My son suggested going cold-turkey for a week to see if it reduced my resistance. I told him I would be a basket case if I went without for a week -- I wouldn't get much sleep at all, and what I got wouldn't be restorative. I would be a vibrating, twitching, hyper-stressed mess. But in any case, B12 isn't a drug, it's a vitamin. I shouldn't get "resistant" to it any more than I get resistant to food.

Has my body been starved for B12 all my life (I'm +/+ MTHFR and others, see below), and now I've awakened the beast and it wants more, more, more? Why do I feel worse than I did 18-20 months ago? I'm packing in tons of methylation support now, and it seems to have a huge positive effect, but it never lasts for long. And when it quits working, I feel MUCH worse than I did two years ago. Am I going to continue to get worse and worse?? Is there any way to get this under control and KEEP it controlled?

Thanks for any insights anyone might have...
Gary
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Not resistance to B12. How much Mfolate are you taking? Not sure how those symptoms would interact. Also, it's possible your vegetable intake is blocking Mfolate. Sorry to hear you're feeling so poorly gary. Anything you can think of that you were doing differently before this recent worsening happened?
 

garyfritz

Senior Member
Messages
599
Currently about 4-5mg/day mfolate. No, I can't think of anything different. My veg intake isn't all that high. Nothing like it was a year+ ago when I had a juicer (and felt fine).

2 yrs ago I had occasional sleep problems and very occasional RLS, and that was it. Most of the time I felt great. Now I'm shoveling in 5mg mB12 tabs like candy, supporting with adB12/mfolate/etc, and frequently I feel lousy. Sometimes it feels like I'm doing more harm than good. :( But if I stop taking it, I feel a lot worse...
 

PeterPositive

Senior Member
Messages
1,426
Do you also take a B complex?
Vitamins like FAD (B2) and NAD (B3) are necessary for folate metabolism, and if you're running short on those you might end up blocking the folate cycle and thus methylation.

In my case (mthfr C677T++) they did help.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Gary, I'd start with increasing Mfolate, 100-200mcg every day or 2-4mg Mfolate: 20mg MB12 isn't such a good ratio. If you look at the beginning ages of the guide linked to my signature, you can read Fred's recommendations re ratios and the other B's, as Peter notes.
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
De tox reactions are very common so feeling worse can be expected, sounds like you just got a honeymoon phase of it for a bit. Check your vitamin D levels as I can almost guarantee those are low too. Methylation will further deplete it. Now that you are on a protocol you also want to be taking a decent amount of micro minerals like magnesium and potassium. Potassium especially will get depleted quickly when using the stuff you mentioned so make sure to hit the RDV of at least 4000mg and supplement for it if necessary. There are also other vitamins and minerals that can be soaked up quick from the methylation support as well. Do not stop treatment completely but you do not need to keep bumping doses up more either. You just need to ride it out, find what else might be deficient and get what you need.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Some of us don't do well with supplements. Possibly due to leaky gut. After a year or so my body was intolerant to all the b vitamins I had been taking. My serum levels were high by then too.

If juicing made you feel better, why not try it again ?

Tc .. x
 

garyfritz

Senior Member
Messages
599
@PeterPositive, I've been taking a B-complex with 20mg B2 and 50mg B3. I just ran out but I'll get more this week.

@ahmo, increasing mfolate was going to be my next experiment. I looked in your doc and the only ratio comment I could find was "Identify donut hole folate insufficiency and titrate with 4x-8x dose size of l-methylfolate
several times a day until those symptoms are strongly diminishing." Which I didn't understand -- titrate what to 4-8x mfolate?

Your doc also says "identify XXX symptoms and titrate YYY," but I don't know what some of the symptoms are. I know my B12 symptoms, and potassium is easy enough. But what are mfolate symtpoms, donut-hole symptoms, methyltrap symptoms, etc?

@Martial, I'm taking 2000 IU D3, 500 mg magnesium (along with 1000mg calcium), and a few others. I haven't been taking potassium consistently but I probably should, since I've had very mild cramping-type reactions in my calves many mornings lately.

@xchocoholic (you should see some of the chocolate desserts I make :D), I felt very slightly better with juicing. However I'm congenitally high in iron, which is toxic for adult males, and green veggies are high in iron. My MD recommended I stop juicing.

Thanks all!
 

Snowdrop

Rebel without a biscuit
Messages
2,933
@garyfritz
It is frustrating and can be elusive to figure out. From what you described (I'm no expert) but I would consider boosting electrolytes.

Not just potassium alone but all of them. Even if this is not the problem, if you don't overdo the amount it shouldn't be harmful at any rate.
 

Tammy

Senior Member
Messages
2,183
Location
New Mexico
I know a lot of people would disagree with me.............but it has always been my personal opinion and I feel strongly about this that supplement/supplements should not be taken on a daily basis.............I think this could cause other imbalances and complicate the body's natural feedback loops.
 

Valentijn

Senior Member
Messages
15,786
I know a lot of people would disagree with me.............but it has always been my personal opinion and I feel strongly about this that supplement/supplements should not be taken on a daily basis.............I think this could cause other imbalances and complicate the body's natural feedback loops.
Interesting. So how do you decide on which days you want to be able to function a bit, and on which you'll be bedbound, in pain, and unable to think clearly?
 

Tammy

Senior Member
Messages
2,183
Location
New Mexico
Interesting. So how do you decide on which days you want to be able to function a bit, and on which you'll be bedbound, in pain, and unable to think clearly
.......................................................................................................................................................................................Tammy's answer.. Well.........first off......Unfortunately...I have never had that kind of control over my illness and would never decide that I WANT to be bedbound, in pain and unable to think clearly on any given day so.......not sure I know how to answer or interpret your question.......don't see it as that black and white................I mean isn't that where all the protocols get so damn complicated....................If I take too much of that......then it causes a deficiency in that..........then that causes a deficiency in that...........so I have to cut back on that. It just seems that it would be safer and perhaps lessen the chances of these scenarios happening if the supplements weren't taken every single day.. This is just my opinion but when I hear stories like Gary's..........when a supplement/supplements were working really great for a time and then quit I think it could very well be due to an imbalance as a result of continually taking something on a daily basis............this is just a thought ......a possiblility that I think can be quite likely. Of course I'm sure there are always exceptions. What is your take @ Valentijn?
 
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ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@garyfritz Youll find some long lists of symptoms at end of doc. I'm sorry, my brain's not so plugged into the protocol at the present, so I can't answer you more directly. Just to say that you might need something closer to = folat/B12 ratio. For me, it's not =, I'm using 20mg B12, 15mg Mfolate, but that's still a vast difference from you 4-5mg folate and 20 mg B12. @caledonia has an excellent selection of links. Sorry, this is all my brain is capable of ATM. good luck with this.:balloons:
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
@PeterPositive, I've been taking a B-complex with 20mg B2 and 50mg B3. I just ran out but I'll get more this week.

@ahmo, increasing mfolate was going to be my next experiment. I looked in your doc and the only ratio comment I could find was "Identify donut hole folate insufficiency and titrate with 4x-8x dose size of l-methylfolate
several times a day until those symptoms are strongly diminishing." Which I didn't understand -- titrate what to 4-8x mfolate?

Your doc also says "identify XXX symptoms and titrate YYY," but I don't know what some of the symptoms are. I know my B12 symptoms, and potassium is easy enough. But what are mfolate symtpoms, donut-hole symptoms, methyltrap symptoms, etc?

@Martial, I'm taking 2000 IU D3, 500 mg magnesium (along with 1000mg calcium), and a few others. I haven't been taking potassium consistently but I probably should, since I've had very mild cramping-type reactions in my calves many mornings lately.

@xchocoholic (you should see some of the chocolate desserts I make :D), I felt very slightly better with juicing. However I'm congenitally high in iron, which is toxic for adult males, and green veggies are high in iron. My MD recommended I stop juicing.

Thanks all!

Yeah you will need a bit more potassium and magnesium for sure, again though being sure not to over do it but at least supplementing to some degree to hit that 4000mg RDV K+ (Potassium) and probably 900-1000mg of Magnesium a day, take Himalyan Sea Salt so you don't get low on sodium from all of that too. A lot of symptoms concerning agitation, anxiety, restlessness, weakness, and other things can actually all be linked to hypokalemia. Vitamin D would probably need to be more like 9000icu a day to notice much of a change, talk to your doctor before hand though, have them run your vitamin D levels right now and see where you are at.
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
Has my body been starved for B12 all my life (I'm +/+ MTHFR and others, see below), and now I've awakened the beast and it wants more, more, more?

Sorry I don't have more answers for you, but to this one I can say "yes - you have been starved for methylB12 all your life". I am assuming if you were anything but -/- for MTHFR C677T, you'd list it too. So, your body doesn't have trouble making methylfolate at all, but it has trouble using it because you have both MTHFR A1298C +/+ and MTRR A66G +/+.

OK, so that's what (I think) I know. The rest is speculation. Just so you know it's me thinking through this and not any expert advice. What I'd really like to see is a serum amino acid profile and homocysteine, done at the same time, plus CBC, CMP, saliva cortisol (morning, afternoon, evening), and Vitamin D. Has your MD done any of these? There are so many clues from lab results.

Now for the stream of consciousness. You took mB12 and it started turning your methyl cycle. All was good, then it wasn't. You then increased mB12, but didn't do it alone - you increased it and added other things, namely methylfolate. (I really don't know how the adB12 or LCF would mess with you, but I can guess that the methylfolate could). Methylfolate, when it backs up in the system (meaning when you don't have any methylB12 to use it up), causes the biopterin cycle to spin, making serotonin and dopamine. Since you are +/+ for MAO A R297R and have some of the COMT, it can affect the neurotransmitters downstream of the biopterin cycle. It may be that pulse of methylfolate that's messing you up. The little extra mB12 helped you out; that would make sense. Why has it stopped? Maybe

My thought would be to lower your dose of methylfolate (in relation to your mB12). And you already know I'm just thinking, and could have left out something important. And I have to hand it to everyone else here for good advice. So my question is, what happens when you cut the methylfolate in half but don't change anything else?

Critterina
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
De tox reactions are very common so feeling worse can be expected, sounds like you just got a honeymoon phase of it for a bit. Check your vitamin D levels as I can almost guarantee those are low too. Methylation will further deplete it. Now that you are on a protocol you also want to be taking a decent amount of micro minerals like magnesium and potassium.

Potassium especially will get depleted quickly when using the stuff you mentioned so make sure to hit the RDV of at least 4000mg and supplement for it if necessary. There are also other vitamins and minerals that can be soaked up quick from the methylation support as well. Do not stop treatment completely but you do not need to keep bumping doses up more either. You just need to ride it out, find what else might be deficient and get what you need.

Here's a good article on how much magnesium to take!:

http://www.lef.org/magazine/mag2014...-Man-On-A-Mission-To-Promote-Magnesium_01.htm
 

garyfritz

Senior Member
Messages
599
@caledonia, I haven't read it in a few months so I'm probably due for a refresher. :) I would understand it better now.

@Martial, **4000mg potassium** !? Yow! That's like 10-20x more than I'm taking, when I do take it at all.

@ggingues, I'm actually fairly close to the level he recommends. 3mg/lb/day would be about 540mg/day for me, and I take 500mg plus other supps & food sources.

@Critterina, clearly you understand this a WHOLE lot better than I do !! You're correct that I'm -/- for C677T. So that means I can make my own methylfolate, but I can't use it, eh? So you recommend reducing mfolate (opposite of what I'm hearing elsewhere) to see if I've gotten overloaded with mfolate. Very interesting.

Sooo confusing...
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
@caledonia, I haven't read it in a few months so I'm probably due for a refresher. :) I would understand it better now.

@Martial, **4000mg potassium** !? Yow! That's like 10-20x more than I'm taking, when I do take it at all.

@ggingues, I'm actually fairly close to the level he recommends. 3mg/lb/day would be about 540mg/day for me, and I take 500mg plus other supps & food sources.

@Critterina, clearly you understand this a WHOLE lot better than I do !! You're correct that I'm -/- for C677T. So that means I can make my own methylfolate, but I can't use it, eh? So you recommend reducing mfolate (opposite of what I'm hearing elsewhere) to see if I've gotten overloaded with mfolate. Very interesting.

Sooo confusing...

4000mg total through diet and supplementation. Whatever it takes to reach that. Powder Potassium is better then pills because they can only go to 99mg a pill. Again talk to your doctor first and be sure it is safe for you.
 

Gondwanaland

Senior Member
Messages
5,094

EDITED TO REMOVE THE GEORGE EBY LINK BECAUSE I THINK IT IS TRYING TO INSTALL A MALICIOUS ADD-ON ON MY BROWSER

Excess calcium over magnesium inhibits absorption of magnesium from the diet.

The "Vitamin D-At-Any-Cost" campaign was replaced by the "Calcium-At-Any-Cost" campaign, which has failed us too. It is time to get serious and address the real problem, magnesium deficiency.

I found those statements to be true for me...

izzy
 
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