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Thoughts on Metanx. High L-Methylfolate for Neuropathy.

Messages
66
Been looking at Metanx and the differences in the vitamin components as compared to recommendations found on this site. I don't have CF but do suffer from SFPN and am looking for a helpful protocol.

As you can see below, the formula emphasizes the Methylfolate with 6 mg a day (in 2 tablets) and only 4mg of Methylcobalamin. This is way more than the 800mcg - 2 or 3mg recommended in most of the protocols here on Phoenix Rising. I have to assume 6mg a day of methylfolate would be safe as these levels are taken by patients prescribed this medical food product. As you can see below, 2 studies I've found indicated actual nerve regeneration with this product. (Although not sure if studies were funded by pharma co. or not)

Seems like these dosages could be replicated with individual products instead of taking Metanx per se.

Would appreciate an board thoughts on Metanx or in particular taking dosages of LMF as high as
6mg a day which seems to be much more than anyone on this site is suggesting. Must say findings of actual nerve regeneration to be intriguing.
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Metanx® tablets are indicated for the distinct nutritional requirements of patients with endothelial dysfunction21-23 who present with loss of protective sensation13 and neuropathic pain24-26associated with diabetic neuropathy.

The usual adult dosage of Metanx® is one tablet twice daily and it is OK to take both tablets at the same time.
L-methylfolate Calcium (as Metafolin®)3mg
Pyridoxal 5′-phosphate35mg
Methylcobalamin2mg
http://www.metanx.com/helpful-resources/metanx-quick-facts/

Study indicates Metanx increases intraepidermal nerve fiber density.
http://diabetes.diabetesjournals.org/content/early/2012/05/14/db11-1524.short

Another Study shows 73% of patients show increased ENFD, 82% of patients - reduced pareesthsia
http://www.ncbi.nlm.nih.gov/pubmed/21769070
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
You might want to spell out what SFPN is, I think I have what you are talking about. Newer diagnosis for me, was part of a study and will do follow up blood tests in 2 weeks, results will take longer to come back. FYI

GG
 

caledonia

Senior Member
http://mthfr.net/comparison-of-homocysteine-support-products/2011/09/13/

Bottom line, Metanx is ok to take, but you'll also need addtional methyl B12 to avoid methyl trapping. Oral B12 only absorbs like 2% through the stomach. Sublingual pill or liquid, or injection is best.

SFPN = peripheral neuropathy

The reason we don't take such high doses on here is because we're filled with toxins which have accumulated while we were sick - and some of us have been sick for decades. As you restart methylation, the toxins will come out and make you feel worse. So you need to dose it at a level you can control - it might be crumbs to start with for many of us.
 
Messages
17
http://mthfr.net/comparison-of-homocysteine-support-products/2011/09/13/

The reason we don't take such high doses on here is because we're filled with toxins which have accumulated while we were sick - and some of us have been sick for decades. As you restart methylation, the toxins will come out and make you feel worse. So you need to dose it at a level you can control - it might be crumbs to start with for many of us.

Could you please be more specific. What exactly are these "toxins" that you refer to? Do they have names and how do you know that they are "coming out"? When you sent your urine or blood to the pathology lab and asked for a toxicology screen, what were the results?
 
Messages
17
Been looking at Metanx and the differences in the vitamin components as compared to recommendations found on this site. I don't have CF but do suffer from SFPN and am looking for a helpful protocol.

As you can see below, the formula emphasizes the Methylfolate with 6 mg a day (in 2 tablets) and only 4mg of Methylcobalamin. This is way more than the 800mcg - 2 or 3mg recommended in most of the protocols here on Phoenix Rising. I have to assume 6mg a day of methylfolate would be safe as these levels are taken by patients prescribed this medical food product. As you can see below, 2 studies I've found indicated actual nerve regeneration with this product. (Although not sure if studies were funded by pharma co. or not)

Seems like these dosages could be replicated with individual products instead of taking Metanx per se.

Would appreciate an board thoughts on Metanx or in particular taking dosages of LMF as high as
6mg a day which seems to be much more than anyone on this site is suggesting. Must say findings of actual nerve regeneration to be intriguing.
-------------------------------------------------------------------------------------------------------------------------------

Metanx® tablets are indicated for the distinct nutritional requirements of patients with endothelial dysfunction21-23 who present with loss of protective sensation13 and neuropathic pain24-26associated with diabetic neuropathy.

The usual adult dosage of Metanx® is one tablet twice daily and it is OK to take both tablets at the same time.
L-methylfolate Calcium (as Metafolin®)3mg
Pyridoxal 5′-phosphate35mg
Methylcobalamin2mg
http://www.metanx.com/helpful-resources/metanx-quick-facts/

Study indicates Metanx increases intraepidermal nerve fiber density.
http://diabetes.diabetesjournals.org/content/early/2012/05/14/db11-1524.short

Another Study shows 73% of patients show increased ENFD, 82% of patients - reduced pareesthsia
http://www.ncbi.nlm.nih.gov/pubmed/21769070
Keep in mind also that Mentanx® is prescribed for diabetic peripheral neuropathy, so the dosages given in trials may not be relevant to your personal situation. Also, the formulation is propriety so the bioavailabilty, delivery, efficacy and drug interactions profile will be different compared to if you buy the active ingredients as individual supplements from other manufacturers.
 

caledonia

Senior Member
Could you please be more specific. What exactly are these "toxins" that you refer to? Do they have names and how do you know that they are "coming out"? When you sent your urine or blood to the pathology lab and asked for a toxicology screen, what were the results?

The toxins are all the environmental toxins around us (or in us, if you have mercury fillings). We are taking them in all the time by breathing, eating, drinking or absorbng them through our skin. The body should either be able to deal with the toxin molecules by using up glutathione molecules to get rid of them, or it will store them in the body fat.

People with ME/CFS have poor methylation and thus depletion of glutathione stores. So they have trouble dealing with toxins, and I think they mainly get stored in the body fat. The toxins are the various heavy metals, such as lead, mercury, arsenic, cadmium, etc. Other toxins can be any of the myriad of chemicals which we encounter over our lifetime - gasoline, solvents, plastics, flame retardants, etc. Nobody escapes this. They've found flame retardants in the fat of Eskimos living in the pristine wilderness in the Arctic.

Getting tested for heavy metals and chelating them out is common. The metal test is a urine test. For whatever reason, most people don't test for chemicals stored in their fat. I'm not sure if it's because the testing is expensive, not readily available, or just pointless as we all have these accumulations.

Here is a personal story. I have a history of exposure to industrial finishes, strippers and solvents. When I got sick with ME/CFS, I also developed multiple chemical sensitivities. This is a sign of glutathion depletion. I went to an environmental medicine specialist and he gave me a supplement with antioxidants and glutathione to start a gentle detox as I was very sick. For TWO YEARS I had this really pungent chemical odor coming out of my chest area and getting on my robe. It stank something horrible and I would wash it and wash it and the smell wouldn't fully come out. I kept thinking, gee this smells familiar, but I couldn't place it. Finally, I realized it was the same smell as the grain filler I had worked with 10 years before (naphtha is the solvent). I'm really glad to have gotten that out of my body. Who knows what else is in there.

There is a similar case in one of Sherry Rogers books, I think "Tired or Toxic". There was a lady who was a hairdresser. Once Dr. Rogers got her detoxing, she had purple stains coming out and staining her pillow and bedsheets. They figured out it was from all the hair dye she had worked with over the years.

There are many methods for detoxifying. The toxins will come out through your urine, feces or sweat.

If you want to know more about this, I suggest reading Sherry Rogers books, "Tired or Toxic" and "Detoxify or Die." I guarantee it will be an eye opening experience.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
so.. testing is pointless because you just know that everyone is full of "toxins"?

Hi Malachy,

Well.... Fortunately the effects of large enough amounts of MeCbl and l-methylfolate is that they do get rid of many of those pesky non-specific toxins and have enough left over to function as they need to. MeCbl is destroyed by the toxins it gets rid of. B12 protects against cyanide, Nitrous oxid, excess glutathione, botulism toxin, glutamate toxicity in the brains, nitro prusside, Tetanus neurotoxin, cascading neuron death, mercury (causes it to be excreted in the bile ending up in the feces) and no doubt others. There isn't a known better neuro anti-toxin. When starting MeCbl, AdoCbl, L-methylfolate and L-carnitine fumarate, most things called "detox" work out to be methyltrap, ATP startup, induced low potassium at starup and induced low folate despite taking some. These can all be demonstrated by each person by effectively titrating the needed items and vbringing things into balance. ATP start needs to be kept under control to begin with. Again, with hundreds of enzyme reactions all starting up some of them deal with enzymes i so many ways. If you test for 100 broken biological pathways and see abnormalities, you are seeing the resutls of broken methylation and broken ATP gneration which arfe unavoidable when all these things are not working.
 
Messages
17
so... B12 is better than tetanus anti-toxin?

Come on Fredd... sometimes, you should read the things you write before you post them.

Science has advanced considerably since the 1950's and 60's. Your information is way out of date.
 

Lotus97

Senior Member
Messages
2,041
Location
United States
I've heard people having good results with Benfotiamine. Sometimes it's good to have a comprehensive strategy rather than to focus on one thing.

This is what Rich says about toxins being released during methylation
One physician I know gives all his patients the methylation treatment, and then watches the response. If they experience some symptoms that appear to be caused by detox, but they are able to tolerate them, he continues with this treatment. If they have intolerable symptoms that appear to be related to mobilization of toxins, then he stops the methylation treatment and works on improving the status of the gut. When that is working better, he moves on to supporting the liver. His thinking is that the toxins that were being mobilized were being reabsorbed by the gut and sent back to the liver. In order to properly process and excrete the toxins, the gut and liver must both be functioning well enough to handle them.

My guess is that when there is an inflammation response to methylation cycle treatment, there is an infection. If the inflammation continues without resolution, then my guess is that the immune system has been reactivated, but is not capable of defeating an existing infection. In such cases, I think that treating to support the immune system would be one approach. Another would be to test to determine what pathogen is causing the infection, and then treating it with an antibiotic, antiviral or antifungal, depending on the pathogen.

I think it's important to note that a healthy person would not have any reaction to the supplements used in the methylation protocols, because their methylation cycle, detox system and immune system would already be functioning normally. So the fact that there is a response, even though it may seem to be deleterious, means that the methylation cycle was partially blocked and that these supplements were needed. However, the way one should proceed from that point on probably depends on the type of response that the individual person has.

So far, I'm pretty sure that if the following are present, they will need specific treatment, in addition to treating the methylation cycle partial block: biotoxin (including mold) illness, Lyme disease and its coinfections, well-entrenched viral infections, and high body burdens of toxic heavy metals, such as mercury. There may be others of which I'm not aware, but there is some experience with these, at least, which people have reported

I believe that the partial methylation cycle block is the pivotal abnormality in the pathogenesis and pathophysiology. With respect to the root cause or causes (etiology) of ME/CFS, I have suggested that this disorder arises from a combination of a genetic predisposition and some combination of a variety of stressors, which can be physical. chemical, biological, or psychological/emotional. I've suggested that this combination leads to glutathione depletion, which leaves B12 unprotected, which causes a decreased production of methylacobalamin, which inhibits methionine synthase, which forms a vicious circle with glutathione depletion, making ME/CFS a chronic condition. The retroviruses would fit within the biological stressors in my hypothesis, and certainly could be a root cause. If effective treatment of the retroviruses ends up bringing about recovery from ME/CFS, that will be very convincing as to its role as an etiologic agent. I hope that turns out to be the case for at least some of the PWMEs/PWCs. It may not be true for all of them, though, because this population seems to be very heterogeneous.

The reason I have included the variety of stressors as etiologic agents is that I have studied the published "risk factor" studies, and have also queried quite a few PWMEs/PWCs as to the events that preceded their onset, and I've found a variety of precursors. The common factor seems to be that they are all things that would be dealt with by the body's nonspecific stress response systems, and these in turn are known to place demands on glutathione.

In addition to this, there are now many PWMEs/PWCs who have taken the Health Diagnostics methylation pathways panel, and nearly all of them show evidence of a partial methylation cycle block or glutathione depletion, and usually both.

And when treatment was given in our clinical study that is directed toward lifting the partial methylation cycle block, we observed by testing that this does in fact occur, and that glutathione also comes up automatically. This was accompanied by improvement in symptoms in at least two-thirds of those who were treated.

Putting all of this together, I think the GD-MCB hypothesis is consistent with the observations and with known biochemistry and physiology. That doesn't mean that I believe that it is scientifically proven, which is a very high standard to meet, and requires considerable investment in time, money and effort, but that it is a valid working hypothesis. I'm hoping to interest researchers and fundors in this model so that it can be more thoroughly tested.

The methylation cycle is at the beginning of the sulfur metabolism. It is fed by methionine, which comes in as part of protein in the diet. Homocysteine is produced from methionine (via SAMe and SAH) in the methylation cycle, and then methionine synthase "decides" how much should be converted back to methionine, to stay in the methylation cycle. In the liver and kidneys, the BHMT reaction also converts some homocysteine back to methionine. The rest of the homocysteine enters the transsulfuration pathway, which is downstream.

The way that methionine synthase does its "deciding" is that the cobalt ion in the cobalamin that is its cofactor gets oxidized at a rate that depends on the state of oxidative stress in the cells. The more oxidizing this state is, the more often the cobalt ion gets oxidized, and that temporarily shuts down the methionine synthase reaction and diverts the homocysteine flow into the transsulfuration pathway, which helps to make more glutathione, which counters the oxidative stress. Unfortunately, in ME/CFS this delicate mechanism gets overwhelmed, and the oxidative stress becomes more severe, so that glutathione doesn't recover and get control of it. The result is that methionine synthase becomes partially blocked, and the sulfur metabolites drain down the transsulfuration pathway, into sulfoxidation, and get excreted too much as taurine and sulfate, which depletes methionine. The whole sulfur metabolism becomes dysfunctional, and that takes down the cell-mediated immune response as well as the detoxication system. As well, everything that depends on methylation reactions is affected, including gene expression, synthesis of several needed substances, and the neurotransmitter metabolism. Also, this drains the folates from the cells via the methyl trap mechanism, and that affects things that depend on folate, such as synthesis of new RNA and DNA. The latter is what cause the red blood cells to be too big and too few in number.

The methylation cycle is so fundamental to so many parts of the body's biochemistry that when it becomes dysfunctional, it causes a host of problems, and this is why people experience so many symptoms, involving so many body systems and organs, in this disorder.
 

adreno

PR activist
Messages
4,841
Benfotiamine nothing but "Snake Oil"

A popular vitamin supplement is being advertised with claims that are demonstrably untrue, as revealed by research published in

http://www.biomedcentral.com/1471-2210/8/10
Did you even read the research you posted? Or did you just fancy the catchy headline. There's nothing in there that proves that benfotiamine isn't effective for peripheral neuropathy. All it says is that it doesn't increase thiamine levels in the brain (or CNS), as opposed to some other forms of thiamine.
 

Lou

Senior Member
Messages
582
Location
southeast US
so... B12 is better than tetanus anti-toxin?

Come on Fredd... sometimes, you should read the things you write before you post them.

Science has advanced considerably since the 1950's and 60's. Your information is way out of date.




May I ask if you've been diagnosed with ME/cfs? Your tone seems unnervingly familiar, very much like many of the doctors I encountered upon first becoming ill nearly twenty-eight years ago.

May I also ask if a certain pronounciation of the name you use is a clue to your presence here?
 
Messages
17
May I ask if you've been diagnosed with ME/cfs? Your tone seems unnervingly familiar, very much like many of the doctors I encountered upon first becoming ill nearly twenty-eight years ago.

May I also ask if a certain pronounciation of the name you use is a clue to your presence here?
Next time you're dying of lockjaw Fredd, take some B12, and if you survive, come back and post the results on here.
 
Messages
17
Did you even read the research you posted? Or did you just fancy the catchy headline. There's nothing in there that proves that benfotiamine isn't effective for peripheral neuropathy. All it says is that it doesn't increase thiamine levels in the brain (or CNS), as opposed to some other forms of thiamine.
I just fancy the catchy headline. :)
 

caledonia

Senior Member
so.. testing is pointless because you just know that everyone is full of "toxins"?

No. Testing for things OTHER THAN metals is pointless because we all have them stored in our fat. Check out the National Human Adipose Tissue Survey. Plus such testing is more in the realm of the laboratory and not widely available to the consumer. However, if you want to go to the expense and trouble of finding a scientist to cut out a chunk of your fat and test it, be my guest.

Testing for metals makes good sense. Some people have metals and some don't. Tests are available to the consumer - a simple urine test.

If you want to chelate out metals, there are different substances for that work better for different metals, so it's good to know what you're dealing with.

All fat stored toxins can be gotten out through sweating, so it doesn't really matter what you have. As the toxins are always coming in, it makes sense to have a regular sauna program. Therefore, there is no need to test what levels you have because there is always going to be more. Our world is polluted, and you can't avoid it.
 
Messages
17
No. Testing for things OTHER THAN metals is pointless because we all have them stored in our fat. Check out the National Human Adipose Tissue Survey. Plus such testing is more in the realm of the laboratory and not widely available to the consumer. However, if you want to go to the expense and trouble of finding a scientist to cut out a chunk of your fat and test it, be my guest.

Testing for metals makes good sense. Some people have metals and some don't. Tests are available to the consumer - a simple urine test.

If you want to chelate out metals, there are different substances for that work better for different metals, so it's good to know what you're dealing with.

All fat stored toxins can be gotten out through sweating, so it doesn't really matter what you have. As the toxins are always coming in, it makes sense to have a regular sauna program. Therefore, there is no need to test what levels you have because there is always going to be more. Our world is polluted, and you can't avoid it.
Even if all that was true (which it's not), how is dumping those toxins back into your bloodstream and then sweating them onto your skin better than leaving them sealed off in their fat catacombs?






If my body was always so full of "toxins".. then I'd be getting myself checked out for a faulty liver, then booking in for a kidney or lung transplant rather than wasting time in a sauna (although that sounds like a very good way to make new friends.)
 

Lotus97

Senior Member
Messages
2,041
Location
United States
Even if all that was true (which it's not), how is dumping those toxins back into your bloodstream and then sweating them onto your skin better than leaving them sealed off in their fat catacombs?
I agree with the second part which is why I believe methylation should be approached very cautiously.