Methylation causing increased numbness and tingling??

[leaves]

Anyone else has this?
Also: I had extremely high serum b12 even when I wasn't taking any..
Possible that the methylation is bad for my nervous system?

 

[richvank]

Anyone else has this?
Also: I had extremely high serum b12 even when I wasn't taking any..
Possible that the methylation is bad for my nervous system?

Hi, leaves.

When there is a functional deficiency in B12, as appears to be true in most cases of ME/CFS, the serum B12 level can be very high. The reason for this appears to be that the cells are not able to utilize B12 normally. They therefore export it back to the blood, bound to haptocorrin. This B12 fraction in the blood is not absorbable by the cells of the body in general,
but is eventually absorbed by liver cells and recycled back to the gut via the bile, where it can be reabsorbed into the blood, bound to transcobalamin, and presented to the cells again. This appears to be a salvage pathway to conserve B12, which can be in scarce supply, depending on the diet.

With regard to the numbness and tingling, perhaps Freddd will respond. He has discussed that in the past as what he calls a "start-up effect," I believe.

Best regards,

Rich

 

[leaves]

Thanks Rich
So in my case b12 is not the restricting factor in the methylation and I should focus on other cofactors, do i understand that correctly?
Hmm "start up" I'm not sure about that: things like increased pain or burning I would expect when nerves heal, but numbness is never a good sign I think..

 

[richvank]

Thanks Rich
So in my case b12 is not the restricting factor in the methylation and I should focus on other cofactors, do i understand that correctly?
Hmm "start up" I'm not sure about that: things like increased pain or burning I would expect when nerves heal, but numbness is never a good sign I think..

Hi, leaves.

To restore the function of the methylation cycle, it is still necessary to supplement B12 together with active folate. The reason is that the high B12 in the blood serum is not useable. Though the B12 is being recycled, the rate at which it can be reabsorbed by the gut, using the normal intrinsic factor mechanism, is too low to raise the supply of B12 to the cells enough to overcome the hijacking of B12 by toxins. It is necessary to use higher dosages of B12, put in sublingually, or by injection, in order to deliver enough to the cells to break up the vicious cycle that is keeping the methylation cycle running too slowly, and glutathione depleted.

Based on test data you have sent me off-forum, your body appears to be low in P5P availability. This may be responsible for the nerve problems.

Best regards.

Rich

 

[dannybex]

Hi Leaves...

Anyone else has this?
Also: I had extremely high serum b12 even when I wasn't taking any..
Possible that the methylation is bad for my nervous system?

I believe you stated elsewhere that you don't have a heavy metal issue. I was wondering how that was tested for? Mercury, for example can show up as low or 'normal' on some hair tests, but still be a problem.

Doctor's Data Hair Elements test is the one to get.

I only mention this as I had increasing numbness, tingling, twitching, etc as my methylation supplements were increased, and now still have the symptoms, but they come and go as I've been chelating. Have stopped the methylation supps temporarily until I can handle them better. Wish I could take them now of course so I could have those active folates, etc., that we all need.

best,

d.

 

[Wayne]

I believe you stated elsewhere that you don't have a heavy metal issue.

My first thoughts were that this sounds like it could be some kind of neuropathy symptoms. My understanding is that neuropathies are generally caused by two primary factors; 1) excess sugar in the blood; and 2) heavy metal concentrations in the body. I think both of these restrict blood flow in the outer extremities.

Since improved methylation can start detoxifying heavy metals, I wonder if this might be one possible explanation for the neuropathy-type symptoms. I'm no scientist; just thinking out loud.

Wayne

 

[leaves]

Thanks all )
The reason I don't think it's heavy metal is that I didn't have mercury fillings. In addition my doc did a porphyrin profile and the results suggested I did not have toxicity from lead arsenic or mercury. There could be other metals ofcourse, maybe copper?? But not sure if that can cause all this

 

[dannybex]

Thanks all )
The reason I don't think it's heavy metal is that I didn't have mercury fillings. In addition my doc did a porphyrin profile and the results suggested I did not have toxicity from lead arsenic or mercury. There could be other metals ofcourse, maybe copper?? But not sure if that can cause all this

Certainly it's a possibility that you don't have a heavy metal problem. But if you have a methylation block -- or blockages w/the other pathways -- these things can build up.

I should note that I had my amalgam fillings out 23 years ago, 10 years before I developed CFS/ME, so I haven't had mercury in my mouth for a long time. Yet, I still, from three different tests (blood and hair) showed elevated mercury, and 'deranged mineral transport (due to mercury), plus other tests showed a methylation block and sulfation problems.

I also had elevated arsenic, cadmium, and very high antimony (used in flame retardants)...which I'm still trying to figure out where that came from and how to get it to GO AWAY.

So...just something to consider, but there are many other possibilities too besides metals. That's great Leaves, that you don't have any fillings!

d.

 

[leaves]

Hmm I think Rich is right and that it has to do with my b6, but I don't understand how still.I'm worried about taking more p5p because of the pyridoxine toxicity..

 

[dannybex]

My first thoughts were that this sounds like it could be some kind of neuropathy symptoms. My understanding is that neuropathies are generally caused by two primary factors; 1) excess sugar in the blood; and 2) heavy metal concentrations in the body. I think both of these restrict blood flow in the outer extremities.

Since improved methylation can start detoxifying heavy metals, I wonder if this might be one possible explanation for the neuropathy-type symptoms. I'm no scientist; just thinking out loud.

Wayne

Hi Wayne -- I'm definitely no scientist either, and certainly don't want to be a one-note Danny, but just from my experience, the heavy metal problem has definitely restricted blood flow to my extremities. Toes are pale for 2/3rds of the day, better by evenings. Hands run hot and cold, but just a weird sort of superficial 'sunburnt' hot, right on the surface. These weirdnesses wax and wane...Wayne!

 

[leaves]

I do have bad circulation too.. (and Danny I think we have the same biomarkers largely) But the test of my doc ruled it out..

 

[richvank]

Hmm I think Rich is right and that it has to do with my b6, but I don't understand how still.I'm worried about taking more p5p because of the pyridoxine toxicity..

Hi, leaves.

Neuropathy can be caused by P5P availability being either too high or too low. Like Goldilocks's porridge, it has to be "just right" (or at least in the right range). Your test results have quite a few biochemical indicators that are saying that your P5P availability is too low, so that seems most likely to me.

Also, the neuropathy that was observed from B6 overdose was found to be reversible when the B6 supplementation was stopped.

Best regards,

Rich

 

[Sallysblooms]

I have to be careful with b6 also.

 

[leaves]

Rich what amount of p5p you think would be ok? 10mg 20mg 50mg??

 

[Freddd]

Anyone else has this?
Also: I had extremely high serum b12 even when I wasn't taking any..
Possible that the methylation is bad for my nervous system?

Hi Leaves,

An intensification of symptoms is a frequent and common result of methylation startup and specifically in the case of the tingling in the nerves, of coming improvement. We feel change, either getting worse or getting better. One of the things that can occur with b12 is that the nerves start working better. That is, with more signal strength and faster impulses. When the nerves are tingling they are saying "hey, I'm damaged but carrying a signal". When nerves come back from numb they are usually very painful at first and the tingling is more as it gets closer to normal. So the symptoms might walk through in reverse order not all the way to numb such as very intense tingling, mild tingling occasional light tingling, cobwebs or hairs, tickles to hypersensitive and fade to normal. If they get worse and worse in tingling, get painful and then go numb, they are going the wrong direction.

With mb12 one can be generally quite sure which direction things are headed as it is quite specific to neurology . Some people react to hycbl or cycbl with a worsening of neurological symptoms at the same time as many other symptoms improve. Even worse is apparantly paradoxical reaction with central symptoms continuing to get worse while peripheral symptoms improve (never the other way around, except maybe with intrathecal injection) when people can't get b12 into the csf/cns with normal amounts of sublingual mb12/adb12.

 

[leaves]

Thanks Fredd for the reply. Not sure if it gets better, I can remember things from long ago and smells suddenly.. But the numbness is a bad sign. I'm also completely exhausted.Too exhausted for the forums really
I would really Apreciate it for any guidance with the p5p..

 

[Freddd]

Thanks Fredd for the reply. Not sure if it gets better, I can remember things from long ago and smells suddenly.. But the numbness is a bad sign. I'm also completely exhausted.Too exhausted for the forums really
I would really Apreciate it for any guidance with the p5p..

Hi Leaves,

For me, I can't say that I have been directly aware of any difference with P-5-P. It is the most subtle of these various things for me. On general principles I take it because I have so many problems with other inactive forms. Also, I am haven't been without it since starting the B-Right so it's not really possible for me to say that I notoce any effect sop far when stopping and starting a P-5-P separate.

On the question of numbness, can you describe it in far more detail? Is the skin numb? Are the muscles numb? Can you wiggle your toes? Can you feel the wiggling of toes or just see it? Do you trip over the tops of your toes?

Remember, a CSF/CNS deficiency of either adb12 and/or mb12 can exist despite "high" body serum levels and requires a different treatment. The deterioration in the CNS can cause the lack of muscle feeling and control, the lack of awareness of where your toes or foot or even leg is located and whether the joints are bent etc. This same deterioration can cause all sorts of muscle pains in hands, feet, legs and arms. My hands are improving for the first time since glutathione ended 2+ years ago at the same time as my feet with something I am trying currently. Exhaustion can exist because of mitochondrial problems in the body but it can also be entirely in the brain from lack of adb12/mb12 etc.

Extremely high serum cobalamin can be because of liver problems. The cobalamin can be entirely useless to you because it is the wrong forms and is totally irrelevant to active b12 response. Also a lack of Metafolin can contribute to these same problems.

If you want to work through all this I need to know all the symptoms from the list and any others, and see how they all fit into a possible schema of everything, what you are current taking and then we can work through all the levels of this and see if you become responsive and get rid of the exhaustion.


And remember, research shows low CSF/CNS cobalamin levels in CFS/FMS. That is correctable but not easily.

 

[richvank]

Rich what amount of p5p you think would be ok? 10mg 20mg 50mg??

Hi, Leaves.

I would suggest trying 20mg per day. That's sort of a maintenance dosage. You may need more, because your NutrEval panel showed several indications that P5P availability is low in your body, but I think it's usually a good idea to start low and go slow until you see how you respond.

Best regards,

Rich

 

[leaves]

Thanks a lot Rich, I will do that right away.
Thanks also Fredd. I'm sorry that I'm just too exhausted for an appropriate reply. I do want to mention that I think the numbness has started since taking 200 mg r-lipoic acid daily. At first this greatly increased my energy and it still works for my mindfog. Is it possible that your gluthathione theory applies here?

My neuro symptoms; tingling in head and feet, temporarily numbness (like being 'asleep' I can't feel them but still move them ) of legs and arms (this was gone for a while since taking benfothiamine but now back in full force) and don't respond to knee response test, and involuntarily movement of hands, arms and legs.
I also take 800 mg Sam-e daily.

Fredd can you give me a link to the list? At the mo don't have the energy but will try asap

 

[Freddd]

Thanks a lot Rich, I will do that right away.
Thanks also Fredd. I'm sorry that I'm just too exhausted for an appropriate reply. I do want to mention that I think the numbness has started since taking 200 mg r-lipoic acid daily. At first this greatly increased my energy and it still works for my mindfog. Is it possible that your gluthathione theory applies here?

My neuro symptoms; tingling in head and feet, temporarily numbness (like being 'asleep' I can't feel them but still move them ) of legs and arms (this was gone for a while since taking benfothiamine but now back in full force) and don't respond to knee response test, and involuntarily movement of hands, arms and legs.
I also take 800 mg Sam-e daily.

Fredd can you give me a link to the list? At the mo don't have the energy but will try asap

Hi Leaves,

can you give me a link to the list? At the mo don't have the energy but will try

http://forums.wrongdiagnosis.com/showthread.php?t=62327

It's the second post on the specified thread. I have a more complete and updated form in the works inspired by Rich.

It's important to know about how many of your symptoms are CNS rather than body. And especially the CNS symptoms that are getting worse or not improving.

Good luck.