B12 deficiency getting worse despite SMP

[nicola]

Hello all

I have lurked for a while around here, tried Fredd's and the SMP protocol several times. Big potassium problems saw me cut doses right back to 400mcg of metafolin and 2mg of the Enzymatic B12 a day, I also take 4gms of Potassium a day, along with magnesium, carnitine, flax seed oil and a multi B vit without folic acid and B12.

First of all I have to say I have had a big energy increase on the folate / B12, and am now back to exercising every day. This is good! But, and there's always a but. I have some very obvious B12 deficiency symptoms - sore dark red tongue, fatigue, very easy bruising, depression which gets better when I take SAME. I have to be careful with doses as I easily get very anxious, and I am now also peri-menopausal, which makes things doubly difficult. Low and slow is the way for me, although I do wonder whether this will ever actually cure me. I am aware of Fredd's theory of paradoxical induced insufficiency, and am pretty certain that applies to me, but with the potassium problems I don't want to increase doses. I also get anxiety and angina type pains when B12 is too high - scary.

I have been taking the SMP doses of folate and B12 now for a good six months. I had a blood test done the other day, which shows a couple of things. Very high serum B12 and folate - more than twice over range despite just taking the RDA, of folate at least. I see from searching through the archives that this is common in CFSers, and Rich said was due to depleted glutathione, which should resolve after a few months. This is not happening in my case. Should I be worried about this? Is there anything I can do to improve utilisation of the B12 and folate that's in my blood? I have read about lithium. Iron? Should I continue to take them with such high serum levels? Why do I have such high levels if I am taking the supplements to overcome the methylation block.

After being at the top of the range for some time, MCH is now over, which means I have pernicious anemia? Why would this have become worse at a time when I have been taking the recommended treatment?

Looking at my serum B12 and folate results, however, any doctor is going to say I don't have pernicious anemia, because they are both so elevated, so I'm not sure I'd get treatment anyway. In any case, my potassium problems (below range - 3.4) mean I probably don't want to go mega dosing B12 anyway.

So how do I treat myself?. Continue with the folate / B12 despite high serum levels? I know this is helpful for me because it is the only thing that has reduced (not cured) my sore tongue, but I hope it will eventually (given the small doses that I have to take). It also gets rid of the brain fog and buzzing muscles. Trying to get a doctor on board with all this - when PA is rarely recognised, with contrary blood results that she won't know how to read - seems pretty hopeless. I don't know what to do. Any advice gratefully received...

Nicola

 

[stridor]

Do you take B2? I got into huge problems trying to fire up the methylation pathway without having enough of it on board. My tongue swelled, split and was about as sore as a tongue can get.
My B12 levels have always been high and this was cited by my Dr to prove that I didn't need any. Daily injections have put me over any measurable range. This is what I have to do to allow for diffusion into cells and across the BBB as I have transcobalamin problems.

Watch out for the carnitine. While it helps a lot of people here, I am not able to take it yet. It will cause me to crash. Anything that pushes my energy levels and produces more superoxide than my depleted glutathione levels can handle will cause me problems. Things like carnitine, ribose and Q10 - it is proceed with caution.......for me.

 

[Freddd]

Hello all

I have lurked for a while around here, tried Fredd's and the SMP protocol several times. Big potassium problems saw me cut doses right back to 400mcg of metafolin and 2mg of the Enzymatic B12 a day, I also take 4gms of Potassium a day, along with magnesium, carnitine, flax seed oil and a multi B vit without folic acid and B12.

First of all I have to say I have had a big energy increase on the folate / B12, and am now back to exercising every day. This is good! But, and there's always a but. I have some very obvious B12 deficiency symptoms - sore dark red tongue, fatigue, very easy bruising, depression which gets better when I take SAME. I have to be careful with doses as I easily get very anxious, and I am now also peri-menopausal, which makes things doubly difficult. Low and slow is the way for me, although I do wonder whether this will ever actually cure me. I am aware of Fredd's theory of paradoxical induced insufficiency, and am pretty certain that applies to me, but with the potassium problems I don't want to increase doses. I also get anxiety and angina type pains when B12 is too high - scary.

I have been taking the SMP doses of folate and B12 now for a good six months. I had a blood test done the other day, which shows a couple of things. Very high serum B12 and folate - more than twice over range despite just taking the RDA, of folate at least. I see from searching through the archives that this is common in CFSers, and Rich said was due to depleted glutathione, which should resolve after a few months. This is not happening in my case. Should I be worried about this? Is there anything I can do to improve utilisation of the B12 and folate that's in my blood? I have read about lithium. Iron? Should I continue to take them with such high serum levels? Why do I have such high levels if I am taking the supplements to overcome the methylation block.

After being at the top of the range for some time, MCH is now over, which means I have pernicious anemia? Why would this have become worse at a time when I have been taking the recommended treatment?

Looking at my serum B12 and folate results, however, any doctor is going to say I don't have pernicious anemia, because they are both so elevated, so I'm not sure I'd get treatment anyway. In any case, my potassium problems (below range - 3.4) mean I probably don't want to go mega dosing B12 anyway.

So how do I treat myself?. Continue with the folate / B12 despite high serum levels? I know this is helpful for me because it is the only thing that has reduced (not cured) my sore tongue, but I hope it will eventually (given the small doses that I have to take). It also gets rid of the brain fog and buzzing muscles. Trying to get a doctor on board with all this - when PA is rarely recognised, with contrary blood results that she won't know how to read - seems pretty hopeless. I don't know what to do. Any advice gratefully received...

Nicola

Hi Nicola,

The "high" serum levels are an illusion, a statistical abstraction that is meaningless or worse when used as a reason to stop b12 and folate. So I would guess you are having paradoxical folate deficiency. So what about AdoCbl and L-carnitine fumarate? The B12 doesn't cause the low potassium.. That can be driven by b1, b2, b3 at the very least. B12 and folate use the potassium. B12 and folate don't DRIVE these things, they allow a return to healthy tissue status. My having that driven effect right off the bat was pretty clearly caused by the B-50 (100mg a day of b1, b2 and b3. I got into trouble when I added those as separates, unable to maintain adequate potassium and methylfolate. The tongue problems make it OBVIOUS that epithelial healing is not turned on no matter what else is happening. The tongue can be painless in 10 days and fully healed in a month when you succeed turning healing on. However you need to change your working hypothesis to one that allows you to heal.

 

[Milford]

This happened to me, Nicolas. My MCV stayed high, at 108 ,despite supplementing with the active b12 and folate, and serum levels were high.
I discovered the need for Lithium levels to be checked. lithium is needed for transporting B12 and Folate into the cells. Many people are low in lithium! but some SNPs are thought to predispose you to lithium dumping.... Where any lithium you do have is dumped out into the urine. These are the MRT and MTRR SNPs . Yasko also says that if you do have lithium depletion and continue to take b12 before putting lithium right! it will make the dumping worse.
I checked lithium in my blood..... Zero. Hair Lithium was off the bottom of the scale.
I stopped taking b12 and folate and started taking lithium orotate! slowly working up to 5mg twice a day. Just taking the lithium started me detoxing...... It was getting the B12 and folate already in my blood into my cells.
MCV retested after a few weeks was down to 104. That was 2 months ago. Will be retesting in another month.

 

[Freddd]

Just to note, there can be any of dozens of subtle insufficiencies of many different things in the body. Also Increasing Methylfolate usually has very little effect on potassium. An increase from 400mcg to 4 grams might not make any difference in potassium whereas reducing any of or all of b3, b2, and b1 might. Other things are possibility too.

 

[Freddd]

Hello all

I have lurked for a while around here, tried Fredd's and the SMP protocol several times. Big potassium problems saw me cut doses right back to 400mcg of metafolin and 2mg of the Enzymatic B12 a day, I also take 4gms of Potassium a day, along with magnesium, carnitine, flax seed oil and a multi B vit without folic acid and B12.

First of all I have to say I have had a big energy increase on the folate / B12, and am now back to exercising every day. This is good! But, and there's always a but. I have some very obvious B12 deficiency symptoms - sore dark red tongue, fatigue, very easy bruising, depression which gets better when I take SAME. I have to be careful with doses as I easily get very anxious, and I am now also peri-menopausal, which makes things doubly difficult. Low and slow is the way for me, although I do wonder whether this will ever actually cure me. I am aware of Fredd's theory of paradoxical induced insufficiency, and am pretty certain that applies to me, but with the potassium problems I don't want to increase doses. I also get anxiety and angina type pains when B12 is too high - scary.

I have been taking the SMP doses of folate and B12 now for a good six months. I had a blood test done the other day, which shows a couple of things. Very high serum B12 and folate - more than twice over range despite just taking the RDA, of folate at least. I see from searching through the archives that this is common in CFSers, and Rich said was due to depleted glutathione, which should resolve after a few months. This is not happening in my case. Should I be worried about this? Is there anything I can do to improve utilisation of the B12 and folate that's in my blood? I have read about lithium. Iron? Should I continue to take them with such high serum levels? Why do I have such high levels if I am taking the supplements to overcome the methylation block.

After being at the top of the range for some time, MCH is now over, which means I have pernicious anemia? Why would this have become worse at a time when I have been taking the recommended treatment?

Looking at my serum B12 and folate results, however, any doctor is going to say I don't have pernicious anemia, because they are both so elevated, so I'm not sure I'd get treatment anyway. In any case, my potassium problems (below range - 3.4) mean I probably don't want to go mega dosing B12 anyway.

So how do I treat myself?. Continue with the folate / B12 despite high serum levels? I know this is helpful for me because it is the only thing that has reduced (not cured) my sore tongue, but I hope it will eventually (given the small doses that I have to take). It also gets rid of the brain fog and buzzing muscles. Trying to get a doctor on board with all this - when PA is rarely recognised, with contrary blood results that she won't know how to read - seems pretty hopeless. I don't know what to do. Any advice gratefully received...

Nicola

Hi Nicola,

Please, HOW HIGH b12 levels? What about AdoCbl and L-carnitine fumarate. They are the other half. What is needed is to get epithelial healing going with all four of the deadlock quartet in the right balance.

"Pernicious Anemia" isn't actually the macrocytic anemia itself but rather is applied to the low IF condition causing a macrocytic anemia. Low folate is a common cause of macrocytic anemia. It was for me. B12 never budged my MCV/MCH but methylfolate does. To keep my MCV under 97 or so I have to keep myself out of folate insufficiency for about 75 days out of 90. If you were to work through the 95% reasons b12 therapies don't work, that catches most of these things. The big thing is there have to be some other unknown influences on MCV because so far mine has never gone below 96.

Easy bruising, depression etc are all symptomatic of not yet gotten all levels of healing going.