Re: Re: excess folate and neurotoxicity

[Guest guest]

Dear a

I guess I was at the end of my tether when I wrote that. I had just got the results of the CT scan which showed nothing . There was no contrast agent used so I would expect that the chance of anything showing would be minimal.

Having slept on it, I realise that the duc failed to give enough background to the radiologist to make an informed decision re technique. I was too brain dead at the time to do anything about it.

23 years of unremitting headache

postural edema

postural tinnitus

high risk factors for cerebrospinal pressure irregularities

weird response to Diamox

increasing parasthesias

peripheral neuritis

gait disturbance and falls

Nothing wrong? Really?

Regards

R

[infections] Re: excess folate and neurotoxicity

,When I developed the severe headache and vestibular nerve damage, my doc did a B blood level test. All my B levels were off the chart high. I was only taking Nature's Way B 50 - no way a toxic dose. I have quit all B vitamins for now. Rich V. is still telling me I should be taking B 12 etc even though it was extremely high.Is he right that I have high blood levels because I don't absorb it - can't use it? I don't know, but I do know that I am now very skeptical of the Yasko protocol and all the vitamin "information" that has been thrown at us for years. Something is amiss.a>> Dear All> I've just got my last blood workups back, everything within the normal range except for Cholesterol and triglycerides which have been high all my life and unusually, B12 (about 4 times the reference minimum) and folate (off the scale around 10 times the reference minimum).> The only things I have found so far suggest that excess folate is neurotoxic ( associated with cognitive decline).> Any bright ideas out in cyberspace? (verified by my exponentially bad spelling and perhaps by peripheral neuritis)> Regards> Windsor>

[Guest guest]

Well, you might want to consider reading Yasko's observations about

high B12 levels. There are quite a few PWCs with high blood levels of

B12. My own was twice the max the only time it has been measured. I

think Yasko and Rich are right -- our bodies aren't using the B12 so

it's not coming out of the bloodstream. The methylation cycle is

messed up. I had my sick son's genetics tested per Yasko and his

genetic mutations are very much in line with her theories. I would

like to test my own as well, but it's expensive.

I don't know about excess folate. Staring at the folate cycle

illustration in my Yasko book isn't helping because I forget which

thing is folate. I see 5 methyl THF and 5, 10 methylene THF, and I

know there's a folinic acid as well as folic, but I need to study it

a few million more times....

- Kate

On May 25, 2007, at 12:23 PM, pjeanneus wrote:

> ,

> When I developed the severe headache and vestibular nerve damage, my

> doc did a B blood level test. All my B levels were off the chart high.

> I was only taking Nature's Way B 50 - no way a toxic dose. I have quit

> all B vitamins for now. Rich V. is still telling me I should be taking

> B 12 etc even though it was extremely high.

>

> Is he right that I have high blood levels because I don't absorb it -

> can't use it? I don't know, but I do know that I am now very skeptical

> of the Yasko protocol and all the vitamin " information " that has been

> thrown at us for years. Something is amiss.

>

> a

>

> >

> > Dear All

> > I've just got my last blood workups back, everything within the

> normal range except for Cholesterol and triglycerides which have

> been high all my life and unusually, B12 (about 4 times the

> reference minimum) and folate (off the scale around 10 times the

> reference minimum).

> > The only things I have found so far suggest that excess folate is

> neurotoxic ( associated with cognitive decline).

> > Any bright ideas out in cyberspace? (verified by my exponentially

> bad spelling and perhaps by peripheral neuritis)

> > Regards

> > Windsor

> >

[Guest guest]

Dear Kate

I'm in the same boat, too many folate compounds and not enough brainpower left to get around it all

R

Re: [infections] Re: excess folate and neurotoxicity

Well, you might want to consider reading Yasko's observations about high B12 levels. There are quite a few PWCs with high blood levels of B12. My own was twice the max the only time it has been measured. I think Yasko and Rich are right -- our bodies aren't using the B12 so it's not coming out of the bloodstream. The methylation cycle is messed up. I had my sick son's genetics tested per Yasko and his genetic mutations are very much in line with her theories. I would like to test my own as well, but it's expensive.I don't know about excess folate. Staring at the folate cycle illustration in my Yasko book isn't helping because I forget which thing is folate. I see 5 methyl THF and 5, 10 methylene THF, and I know there's a folinic acid as well as folic, but I need to study it a few million more times....- KateOn May 25, 2007, at 12:23 PM, pjeanneus wrote:> ,> When I developed the severe headache and vestibular nerve damage, my> doc did a B blood level test. All my B levels were off the chart high.> I was only taking Nature's Way B 50 - no way a toxic dose. I have quit> all B vitamins for now. Rich V. is still telling me I should be taking> B 12 etc even though it was extremely high.>> Is he right that I have high blood levels because I don't absorb it -> can't use it? I don't know, but I do know that I am now very skeptical> of the Yasko protocol and all the vitamin "information" that has been> thrown at us for years. Something is amiss.>> a>> >> > Dear All> > I've just got my last blood workups back, everything within the> normal range except for Cholesterol and triglycerides which have> been high all my life and unusually, B12 (about 4 times the> reference minimum) and folate (off the scale around 10 times the> reference minimum).> > The only things I have found so far suggest that excess folate is> neurotoxic ( associated with cognitive decline).> > Any bright ideas out in cyberspace? (verified by my exponentially> bad spelling and perhaps by peripheral neuritis)> > Regards> > Windsor> >

[Guest guest]

On May 26, 2007, at 1:44 AM, pjeanneus wrote:

> Are these people (cfs patients you mention) taking B supplements? I

> think the first assumption would be to find out if anyone absorbs

> vitamin B, any vitamin B, or if it is even a good thing for most

> people. I think we need a lot more studies of normal, healthy people

> and cfs people to see what vitamin B supplements do.

I haven't checked to see what studies already exist. I did mention

the high B12 blood levels to my son's psychiatrist, who is very

smart, and she had never heard of a case of high B12 blood levels

before. She said the normal range is very large so she was surprised

it was possible to go over it. It seemed pretty strange to her that

so much B12 was hanging around in blood.

I think I was taking B50s at the time of my test, same as you. We

should have been using that up. I don't know about the others.

I agree, it's important to know what happens with control subjects.

If you find out anything, please post it!

- Kate

[Guest guest]

I spent several years studying and religiously supplementing with vitamins and minerals in all kinds of forms, without much result I'm sorry to say, with the exception of a few, (Bs, magnesium, & chromium for me personally). The B balance is very important and also tricky. Just like mag & calcium, they are antagonistic. Taking too much of one B vitamin will drastically deplete other Bs which can have a severe impact on your body (see my experience below). That's why it's important to carefully monitor your personal B levels (either through testing or, if that's not possible, paying very close attention to how you respond) and then supplement only what you really need. It's the reason they sell B complexes, to avoid creating an imbalance, because it can be dangerous. The B complex is generally less risky than supplementing with the individual Bs. However, if you've

already got any significant deficiencies in one or more of the Bs, the B complexes can do more harm than good, as supplementing with ones you don't need will just further deplete the ones you're already short on and increase those you don't need. It's very common for those of us who are sick to not be able to absorb various nutrients. Excess minerals in hair samples would seem to show an excess of minerals being stored in the body, but it can also mean the body is not assimilating the minerals well at all. I don't know if the same thing applies to blood levels, although some people believe this to be true. It's hard to know what's going on for sure, so using caution with supplementation is critical. If you do some searching on these issues, you'll find tons of information and points of view to try to determine what may be happening in your case.

Unfortunately, I know how difficult it is to do when you've got brain fog & headaches, but a B imbalance could be contributing significantly to your symptoms. I went through about a year where I had very bizarre, uncomfortable symptoms which seemed to affect the nerves in my body. It manifested in periods of severe internal itching in my palms, soles of my feet, armpits, mouth, etc. It started out maybe once a month, and eventually was happening several times a day. I also sometimes experienced severe abdominal cramping during these episodes. Doctors had no ideas, other than thinking I was having some kind of "autoimmune" allergic reaction. After doing a lot of research, I started taking various B vitamins, and the episodes cleared up quickly. So being depleted in the Bs can manifest in all kinds of strange ways. penny pjeanneus

<pj7@...> wrote: Are these people (cfs patients you mention) taking B supplements? I think the first assumption would be to find out if anyone absorbs vitamin B, any vitamin B, or if it is even a good thing for most people. I think we need a lot more studies of normal, healthy people and cfs people to see what vitamin B supplements do. a Carnes>> > Well, you might want to consider reading Yasko's observations about > high B12 levels. There are quite a few PWCs with

high blood levels of > B12. My own was twice the max the only time it has been measured. I > think Yasko and Rich are right -- our bodies aren't using the B12 so > it's not coming out of the bloodstream. The methylation cycle is > messed up. I had my sick son's genetics tested per Yasko and his > genetic mutations are very much in line with her theories. I would > like to test my own as well, but it's expensive.> > I don't know about excess folate. Staring at the folate cycle > illustration in my Yasko book isn't helping because I forget which > thing is folate. I see 5 methyl THF and 5, 10 methylene THF, and I > know there's a folinic acid as well as folic, but I need to study it > a few million more times....> > - Kate> > On May 25, 2007, at 12:23 PM, pjeanneus wrote:> > ,> > When I developed the severe headache and

vestibular nerve damage, my> > doc did a B blood level test. All my B levels were off the chart high.> > I was only taking Nature's Way B 50 - no way a toxic dose. I have quit> > all B vitamins for now. Rich V. is still telling me I should be taking> > B 12 etc even though it was extremely high.> >> > Is he right that I have high blood levels because I don't absorb it -> > can't use it? I don't know, but I do know that I am now very skeptical> > of the Yasko protocol and all the vitamin "information" that has been> > thrown at us for years. Something is amiss.> >> > a> >> > >> > > Dear All> > > I've just got my last blood workups back, everything within the> > normal range except for Cholesterol and triglycerides which have> > been high all my life and unusually,

B12 (about 4 times the> > reference minimum) and folate (off the scale around 10 times the> > reference minimum).> > > The only things I have found so far suggest that excess folate is> > neurotoxic ( associated with cognitive decline).> > > Any bright ideas out in cyberspace? (verified by my exponentially> > bad spelling and perhaps by peripheral neuritis)> > > Regards> > > Windsor> > >>

[Guest guest]

I just remembered that I've read that increased homocysteine levels can cause excessive blood clotting (and heart disease), which is the last thing we want when trying to fight an infection. Homocysteine levels are supposedly reduced with Folate (B9) and some of the other Bs. You may want to do some research on your homocysteine levels, see where they're at. If they're extremely low, and your Bs are high, then you could theorize that the Bs in your blood are being metabolized by your body to reduce the homocysteine. If your homocysteine levels are high, then either the B's aren't being absorbed, or they're being elevated to try to combat the homocysteine levels. If you then supplement with some Bs and your homocysteine drops or stays the same, you could possibly conclude that your body is just not metabolizing the Bs without some additional help. penny pjeanneus <pj7@...> wrote: Are these people (cfs patients you mention) taking B supplements? I think the first assumption would be to find out if anyone absorbs vitamin B, any vitamin B, or if it is even a good thing for most people. I think we need a lot more studies of normal, healthy people and cfs people to see what vitamin B supplements do. a Carnes>> > Well, you might want to consider reading Yasko's observations

about > high B12 levels. There are quite a few PWCs with high blood levels of > B12. My own was twice the max the only time it has been measured. I > think Yasko and Rich are right -- our bodies aren't using the B12 so > it's not coming out of the bloodstream. The methylation cycle is > messed up. I had my sick son's genetics tested per Yasko and his > genetic mutations are very much in line with her theories. I would > like to test my own as well, but it's expensive.> > I don't know about excess folate. Staring at the folate cycle > illustration in my Yasko book isn't helping because I forget which > thing is folate. I see 5 methyl THF and 5, 10 methylene THF, and I > know there's a folinic acid as well as folic, but I need to study it > a few million more times....> > - Kate> > On May 25, 2007, at 12:23 PM, pjeanneus wrote:>

> ,> > When I developed the severe headache and vestibular nerve damage, my> > doc did a B blood level test. All my B levels were off the chart high.> > I was only taking Nature's Way B 50 - no way a toxic dose. I have quit> > all B vitamins for now. Rich V. is still telling me I should be taking> > B 12 etc even though it was extremely high.> >> > Is he right that I have high blood levels because I don't absorb it -> > can't use it? I don't know, but I do know that I am now very skeptical> > of the Yasko protocol and all the vitamin "information" that has been> > thrown at us for years. Something is amiss.> >> > a> >> > >> > > Dear All> > > I've just got my last blood workups back, everything within the> > normal range except for Cholesterol and

triglycerides which have> > been high all my life and unusually, B12 (about 4 times the> > reference minimum) and folate (off the scale around 10 times the> > reference minimum).> > > The only things I have found so far suggest that excess folate is> > neurotoxic ( associated with cognitive decline).> > > Any bright ideas out in cyberspace? (verified by my exponentially> > bad spelling and perhaps by peripheral neuritis)> > > Regards> > > Windsor> > >>

[Guest guest]

On May 26, 2007, at 1:54 PM, Penny Houle wrote:

>

> I just remembered that I've read that increased homocysteine levels

> can cause excessive blood clotting (and heart disease), which is

> the last thing we want when trying to fight an infection.

>

> Homocysteine levels are supposedly reduced with Folate (B9) and

> some of the other Bs. You may want to do some research on your

> homocysteine levels, see where they're at. If they're extremely

> low, and your Bs are high, then you could theorize that the Bs in

> your blood are being metabolized by your body to reduce the

> homocysteine. If your homocysteine levels are high, then either the

> B's aren't being absorbed, or they're being elevated to try to

> combat the homocysteine levels. If you then supplement with some Bs

> and your homocysteine drops or stays the same, you could possibly

> conclude that your body is just not metabolizing the Bs without

> some additional help.

>

> penny

This is exactly the kind of thing that Yasko researches! For

instance, my son's genetic results indicate that he might have high

homocysteine because of a mutation in MTHFR 677T. However, he also

has a mutation in CBS C699T which helps deplete that elevated

homocysteine. I don't know what his actually measures, but it might

measure normal or even low despite having some genetics that

predispose toward elevated homocysteine. So it gets quite complicated.

- Kate

[Guest guest]

, I forgot to mention that my son's genetic test came back with a MTHFr mutation that supposedly means he can't process regular folic acid well. It is suggested that he supplement with 5-methyltetrahydrofolate, which is an intermediate in the folate cycle. I don't know if his blood folate levels measure high because of this though. Neither of us have had folate levels tested. If it can't be converted though, maybe it does stick around in the blood. Did your test give a chemical formula or just say "folate"?Here's part of Yasko's explanation of the folate cycle:"This cycle involves the conversion of tetrahydrofolate (THF) into 5,10-methylenetetrahydrafolate which in turn gets converted to 5-methyltetrahydrofolate (MTHF). MTHF is then converted back into THF. Dietary folate, or folic acid that you get from your foods, is converted into a product called dihydrafolate (DHF) in the presence of Vitamin B3. DHF is then converted to THF, also with the aid of B3. THF is converted to 5,10-methylenetetrahydrofolate with help from Vitamin B6, P5P and Serine. Essentially THF gains a "methylene" group (different from methyl group) from serine to become 5,10-methylenetetrahydrofolate. Alternatively folinic acid (5-formyltetrahydrofolate, different from folic acid) is also converted to 5,10-methylenetetrahydrofolate in a reaction occurring simultaneously. 5,10-methylenetetrahydrofolate is then converted to 5-methyltetrahydrofolate (MTHF) aka "Folapro" by the enzyme methylenetetrahydrafolatereductase (MTHFr) with the aid of NADH, B2 and ATP."And if the above isn't working right, it also leads to inefficiency in the methylation cycle because the two cycles intersect.- Kate I've just got my last blood workups back, everything within thenormal range except for Cholesterol and triglycerides which havebeen high all my life and unusually, B12 (about 4 times thereference minimum) and folate (off the scale around 10 times thereference minimum). Windsor

[Guest guest]

Will do.

- Kate

On May 28, 2007, at 3:44 PM, pjeanneus wrote:

> Kate,

> If at some point you and/or your son get blood levels of B vitamins

> tested WHILE TAKING YASKO'S SUGGESTED B VITAMINS I would be MOST

> interested to see the results.

>