Methylation causing increased numbness and tingling??

[leaves]

Thanks Freddd!
I may have found the reason for my increased neuropathy; I had this before but activated thiamin cream got rid of the numbness.. I was taking r-la and this caused the neuropathy to act up again : lipoic acid is known to cause thiamin deficiencies .. So I think my problem is partly caused by low thiamin .

 

[Sallysblooms]

I guess that was a really high dose Leaves? You can just add a b complex but you fixed it, that is good.

 

[leaves]

Well not a really high dose, but I guess I've got real problems In the thiamin domain :-| I'm first gonna work on my neuropathy issues with b12 and thiamin before I do anything else now.. I love r-la but not good for me at the mo..

 

[Freddd]

Well not a really high dose, but I guess I've got real problems In the thiamin domain :-| I'm first gonna work on my neuropathy issues with b12 and thiamin before I do anything else now.. I love r-la but not good for me at the mo..

Hi Leaves,

Neuropathies can be very difficult to heal. Methylb12 is the only form of cobalamin that promotes neurological healing according to research and experience of many. On top of that, adb12 is needed to aid in myelin generation along with omega3 oils (type is subject to much discussion) and ALL the basics. Then it depends upon whether the problem is peripheral or in the brain and cord (CNS). Those can take substantial mb12 injections. I take 3x10mg SC injections daily to make any progress.

Can you describe all the details of your various neuropathies and their duration and progression.

 

[leaves]

Hmm I've had a weak response to the knee response test for at least 1.5 year (first time i was tested) Now no response. 3 yrs ago tingling in head and feet started, as well as fuzzy/bubbly feeling in legs (like soda pop) now for 2 yrs also temporary numbness in legs and arms and since 1. Yr involuntary movements of legs and arms and my legs ache from within.
I've had extremely cold hands and feet for at least 12 yrs.
I've also had crawling sensations on my skin but that was for a few months only (was caused by wormwood that I tried at the time)

Oh and I also as good as stopped sweating 2yrs ago, but don't know if that's neuro?

That is all peripheral Right ?? :-|

 

[susan]

I had stopped started the Methylation due to another issue. I have slowly been increasing my MethyL B12/folinic acid in Nasal spray form. I had Metametrix tests done so I have a compounded mix of other supps but have chosen not to take that form and introducing the individual supps separately until I can tolerate everything. My test revealed I only needed 500mg of MB and 800mcg of folinic acid. However I am choosing to take 1.25 mg of Mb B12 with 800mcg of folinic acid as metafolin. I am now getting so sleepy....a drunk like state totally unable to do much. Is this symptom of Methylation working.?

 

[Freddd]

I had stopped started the Methylation due to another issue. I have slowly been increasing my MethyL B12/folinic acid in Nasal spray form. I had Metametrix tests done so I have a compounded mix of other supps but have chosen not to take that form and introducing the individual supps separately until I can tolerate everything. My test revealed I only needed 500mg of MB and 800mcg of folinic acid. However I am choosing to take 1.25 mg of Mb B12 with 800mcg of folinic acid as metafolin. I am now getting so sleepy....a drunk like state totally unable to do much. Is this symptom of Methylation working.?

Hi Susan,

You say 1.25mg of mb12, in what form? A 5mg Jarrow might be able to supply 1.25mg of mb12 in serum over a 2 hour period (25% absorption) which is right at the top of the range of mucosa contact absorption. In order to actually get a dose of 1.25mg in to the body in nasal spray I have no idea of how to even approximate that. I suspect you would be lucky to get 20-25% absorption, if that much.

A a sleepy drunk like state is not a usual response to mb12 and Metafolin. Often it is rather more stimulating though very sleepy can happen in about 12 hours after a mb12 dose at first as the melatonin starts being generated If you mean a gross dose of 1.25mg of mb12 in a spray, there is no telling how much is absorbed or how effective it is and like the multitude of sublinguals, may actually be almost totally ineffective because of the mb12 being started with in the first place.

I have never seen "treatment by test", though I have no experience with the test you took, actually work out in b12 and folate related matters. And if you are like many with CFS/FMS and have low CNS/CSF cobalamin, 1.25mg absorbed doesn't come close to penetrating the CSF in adequate amounts to heal.

A 500mcg injected dose of a good methylb12 might put you into major startup. That would be twice the dose absorbed from a 1mg Enzymatic Therapy, 250mcg, and that is enough for major startup responses which typically don't amount to sleepy and drunken seeming. Usually just the opposite. So more info would be helpful to know what you are actually doing. Also, adb12 might have a major effect and that has nothing to do with methylation and everything to do with energy generation in the mitochondria.

 

[Freddd]

Hmm I've had a weak response to the knee response test for at least 1.5 year (first time i was tested) Now no response. 3 yrs ago tingling in head and feet started, as well as fuzzy/bubbly feeling in legs (like soda pop) now for 2 yrs also temporary numbness in legs and arms and since 1. Yr involuntary movements of legs and arms and my legs ache from within.
I've had extremely cold hands and feet for at least 12 yrs.
I've also had crawling sensations on my skin but that was for a few months only (was caused by wormwood that I tried at the time)

Oh and I also as good as stopped sweating 2yrs ago, but don't know if that's neuro?

That is all peripheral Right ?? :-|

Hi leaves,

I wasn't looking for "all peripheral". I need to see ALL the neurological symptoms of every kind because first there is usually a mix of central and peripheral and I need to see what that mix is. You may be having more of a central degeneration problem than peripheral. Are there mood and personality changes, memory, cognition, hallucinations, etc. Are there tight sore muscles in arms and legs, feet and hands, neck? and so on and so on. That's why you need to work from the list and indicate ALL of the symptoms.

 

[susan]

I had stopped started the Methylation due to another issue. I have slowly been increasing my MethyL B12/folinic acid in Nasal spray form. I had Metametrix tests done so I have a compounded mix of other supps but have chosen not to take that form and introducing the individual supps separately until I can tolerate everything. My test revealed I only needed 500mg of MB and 800mcg of folinic acid. However I am choosing to take 1.25 mg of Mb B12 with 800mcg of folinic acid as metafolin. I am now getting so sleepy....a drunk like state totally unable to do much. Is this symptom of Methylation working.?

Hi Fredd,
I have had trouble with orally taking stuff....liver problems, nausea etc. So I am beginning again hence the Nasal form of B12/folinic acid. Have gradually got to the point where I can take the co factors, selenium, c, d,e,mag, manganese, chromium, vandaium, fish oil as per test results. Compounding pharmacy said Nasal form of B12/folinic acid gets absorbed at a high level and gets to the brain in 20 mins. My problem seems to be when I increase the Folinic acid...have been increasing the folinic acid in each spray but not MB12 as I seem to be Ok tolerating it. It seems I am Ok on 200mcg of folinic in spray form. A few mths back could not take your recommended brand. of Metafolin...only 1/8 ...so went down the nasal route. I did do the Jarrow B12 ok but since I could not get the folinic acid in I tried the nasal spray combined which has worked to a point. My naturopath is unavailable now. Last year when he was de bugging my gut, every time I took Mutaflor for salmonella ....just one tab a week, I got this drunken stupor the day after.. He said it was the die off of bugs. Each week it got less and less. I think this maybe the case here. The compounding pharmcy where I get my nasal spray specilises in Autism stuff, Dan protocol.

 

[Freddd]

Hi Fredd,
I have had trouble with orally taking stuff....liver problems, nausea etc. So I am beginning again hence the Nasal form of B12/folinic acid. Have gradually got to the point where I can take the co factors, selenium, c, d,e,mag, manganese, chromium, vandaium, fish oil as per test results. Compounding pharmacy said Nasal form of B12/folinic acid gets absorbed at a high level and gets to the brain in 20 mins. My problem seems to be when I increase the Folinic acid...have been increasing the folinic acid in each spray but not MB12 as I seem to be Ok tolerating it. It seems I am Ok on 200mcg of folinic in spray form. A few mths back could not take your recommended brand. of Metafolin...only 1/8 ...so went down the nasal route. I did do the Jarrow B12 ok but since I could not get the folinic acid in I tried the nasal spray combined which has worked to a point. My naturopath is unavailable now. Last year when he was de bugging my gut, every time I took Mutaflor for salmonella ....just one tab a week, I got this drunken stupor the day after.. He said it was the die off of bugs. Each week it got less and less. I think this maybe the case here. The compounding pharmcy where I get my nasal spray specilises in Autism stuff, Dan protocol.

Hi Susan,

Let's consider "and gets to the brain in 20 mins." While that is equally true of sublingual there is the elephant in the room nobody wants to talk about. It's that pesky research that shows that those with CFS/FMS have reduced CSF cobalamin levels. The researchers in this area have shown that to be the case with just about every neurological disease. They hypothesize that there are defects in the normal transport mechanism taking b12 into the CSF. Based on data from intrathecal injections of mb12 it was also demonstrated that the problem may also be contributed to by more rapid loss of cobalamin from the CSF in some people. The Japanese research has indicated that it takes doses of mb12 on the order of 50mg a day to overcome that problem and improve function and maybe heal. So some fraction of a mg of or even a mg or 3 into serum isn't enough to cause penetration of the brain by diffusion by enough mb12 to correct many of the problems there. Being absorbed in the nasal passages as opposed to the oral cavity isn't a fast path to the brain. The blood is still circulated through the body and has to enter the brain the same way any mb12 enters the brain.

 

[Rooney]

After being on mod. meth. prototol a few weeks, I know it's working as my lymph nodes in my neck ache, etc. after taking the supps. and my usual poisoned feeling is gone (yea and thanks!). Problem is in the last fewe days my left arm has numbness but nowhere else. My NutrEval suggests lots of Bs, ALA and minerals; no toxins were seen. A recent bike test indicated left atrium problem and an inability to raise body temp. in excercise. I have PEM;OI;fibro. I know this must be checked out with my physician but has anyone tied one-sided numbness with methylation?

Many Thanks, R

 

[Freddd]

After being on mod. meth. prototol a few weeks, I know it's working as my lymph nodes in my neck ache, etc. after taking the supps. and my usual poisoned feeling is gone (yea and thanks!). Problem is in the last fewe days my left arm has numbness but nowhere else. My NutrEval suggests lots of Bs, ALA and minerals; no toxins were seen. A recent bike test indicated left atrium problem and an inability to raise body temp. in excercise. I have PEM;OI;fibro. I know this must be checked out with my physician but has anyone tied one-sided numbness with methylation?

Many Thanks, R

Hi Rooney,

One sided neuro problems are not associated with b12 deficiencies, though impact may be uneven, especially early on. As far as other matters, getting to work on the fibro and energy problems (body temp in exercise) can be helped a lot with adb12, l-carnitine fumarate and a number of other things.


What is PEM;OI?

 

[richvank]

What is PEM;OI?

Hi, Freddd.

PEM is post-exertional malaise. It is an identifying characteristic of ME/CFS. If a person with this disorder undertakes some exericise, they will suffer from malaise and fatigue for a day or several days afterward.

OI is orthostatic intolerance. This is also a common aspect of ME/CFS. When the person stands up, they experience a rapid heartbeat (postural orthostatic tachycardia syndrome or POTS) or low blood pressure (orthostatic hypotension) or both.

Best regards,

Rich

 

[Freddd]

Hi, Freddd.

PEM is post-exertional malaise. It is an identifying characteristic of ME/CFS. If a person with this disorder undertakes some exericise, they will suffer from malaise and fatigue for a day or several days afterward.

OI is orthostatic intolerance. This is also a common aspect of ME/CFS. When the person stands up, they experience a rapid heartbeat (postural orthostatic tachycardia syndrome or POTS) or low blood pressure (orthostatic hypotension) or both.

Best regards,

Rich

Hi Rich,

I have just demonstrated one of the problems with data collection from people on symptoms and why redundancy produces more responses. Of course I know the terms but PEM and OI were not wired in as shortcuts. To me OI is part of oi-oi-oi or oy-oy-oy.

And you have reminded me of 4 more wordings that need to go into the spreadsheet. I had them both but somehow overlooked them in this form. Tally ho! Thankyou.