• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

8 months on and back to square one. Any suggestions??

Messages
29
Hi.

I posted here in April after having a very bad reaction to Country Life AD-B12. Fredd was kind enough to reply and suggested the Folic acid in this had caused a Paradoxical Folate Deficiency and that taking Folate and Methyl-B12 would help.

I couldn't tolerate much of either and began taking pinches of both. I have very slowly increased both over 8 months and the pain had eased considerably. Until I reaced 200mcgs Folate and 2,500mcgs of Methyl-B12.

After 15 days on that dose I've become deeply depressed ( so much so my dr. wants me to have an SSRI), anxious, irritable, have bad headaches, nausea and stomach problems.

On top of these I have all the awfull nerve pain and hypersensitivity in my scalp and forehead that I had before starting the pinches of Folate and B12. It is intolerable and I feel unable to cope with it.

I'm thinking some of the symptoms might be detox. But, don't understand why on a low dose the nerve pain eased only to get worse when the dose was increased. If it is a Folate Def. surely the higher the folate dose the better?

I stopped the supplements but the pain got worse so now I have reduced the dose again to a pinch but don't know
where to go from here?

ANY suggestions as to whats going on or what to do would be appreciated.

Wini
 

aprilk1869

Senior Member
Messages
294
Location
Scotland, UK
Wini, it's difficult to know what to suggest. Rich would probably tell you that taking too much b12 will overdrive the methylation cycle resulting in not enough glutathione which in turn causes excitotoxicity which includes depression and anxiety.

However potassium deficiency caused by rapid healing can also cause many of these symptoms. In order to eliminate this as a possibility you'd want to take 5 potassium tablets with plenty of water. If symptoms improve then it's a potassium deficiency, if not then it's probably excitotoxicity caused by glutathione-depletion.

Regarding nerve pain, this is what my dad dealt with (including scalp sensitivity) and it went away with b12. I got him up to 20mg of mb12 very quickly but then I got him to reduce the dose. I'm not sure what he's taking now, if he's even taking any of the supplements at all.
 
Messages
29
April, thanks for taking the time to reply.

I wonder if you have any ideas as what to do for excitotoxicity? I'm sure it's in a thread somewhere but the way I feel at the moment using the computor is difficult!

Did your Dad take folate with the mb12?

First I'll give the potassium a try and see if this helps.

wini
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Hi Linda, ive had a problem with excitotoxicity with Mb12 (injected) From what io can gather Rich suggests trying Glutathione with the B12, i also gather its very hard to get into your system so you need Liposomal Glutathione. The other thing to do is to keep the dose lower so that you do not get this problem. I am having to take half the dose i have been prescribed every other day rahter than every day. The excitotoxocity has gone, but so have the benefits i was feeling from the b12.
Hope this helps a bit, Justy.
 

richvank

Senior Member
Messages
2,732
Hi, Linda.

If potassium or liposomal glutathione don't help, you might consider switching from methyl B12 to hydroxo B12. It's possible that you are getting too many methyl groups from the combination of methyl B12 and methylfolate. People differ in their need for methyl groups, depending on the genetic polymorphisms they have inherited.

To find out what's going on, it can be helpful to run some lab tests. I suggest running the methylation pathways panel from Health Diagnostics and Research Institute in New Jersey, together with a plasma amino acids panel, such as the Metametrix 40 Plasma Amino acids panel, which is available from www.directlabs.com without a doctor's order. This combination will tell you the status of your methylation cycle, folate metabolism, glutathione, and amino acids in general. If it is not feasible for you to get the methylation pathways panel, which requires a doctor's or chiropractor's order, you could consider getting the Genova Diagnostics metabolic analysis profile, also available from www.directlabs.com without a doctor's order. It will give indirect information about folate, B12, methylation and glutathione, and it will complement the amino acids panel, each helping to interpret the other.

Best regards,

Rich
 
Messages
29
Hi Linda, ive had a problem with excitotoxicity with Mb12 (injected) From what io can gather Rich suggests trying Glutathione with the B12, i also gather its very hard to get into your system so you need Liposomal Glutathione. The other thing to do is to keep the dose lower so that you do not get this problem. I am having to take half the dose i have been prescribed every other day rahter than every day. The excitotoxocity has gone, but so have the benefits i was feeling from the b12.
Hope this helps a bit, Justy.

Hi Justy. Thanks for replying. Unfortunately I cannot tolerate Glutathione for some reason. When I've tried it before it makes me feel worse for some reason?

I have now stopped the Folate and Mb12 for a few days and started with a pinch again. Linda
 
Messages
29
Hi, Linda.

If potassium or liposomal glutathione don't help, you might consider switching from methyl B12 to hydroxo B12. It's possible that you are getting too many methyl groups from the combination of methyl B12 and methylfolate. People differ in their need for methyl groups, depending on the genetic polymorphisms they have inherited.

To find out what's going on, it can be helpful to run some lab tests. I suggest running the methylation pathways panel from Health Diagnostics and Research Institute in New Jersey, together with a plasma amino acids panel, such as the Metametrix 40 Plasma Amino acids panel, which is available from www.directlabs.com without a doctor's order. This combination will tell you the status of your methylation cycle, folate metabolism, glutathione, and amino acids in general. If it is not feasible for you to get the methylation pathways panel, which requires a doctor's or chiropractor's order, you could consider getting the Genova Diagnostics metabolic analysis profile, also available from www.directlabs.com without a doctor's order. It will give indirect information about folate, B12, methylation and glutathione, and it will complement the amino acids panel, each helping to interpret the other.

Best regards,

Rich

Rich, thankyou for taking the time to reply.

I have tried the potassium which hasn't helped at all and I cannot tolerate the Glutathione for some reason.

I have stopped the Folate and Mb12 for a few days and re-started on a pinch but will change to Hy-B12 when it arrives. The depression and anxiety has eased a lot but I still have a lot of muscle and nerve pain in scalp and face.

I am looking at doing one of the tests you suggest but live in the UK and am unsure whether I would be able to do them from this distance.

Thanks. Linda
 

richvank

Senior Member
Messages
2,732
Rich, thankyou for taking the time to reply.

I have tried the potassium which hasn't helped at all and I cannot tolerate the Glutathione for some reason.

I have stopped the Folate and Mb12 for a few days and re-started on a pinch but will change to Hy-B12 when it arrives. The depression and anxiety has eased a lot but I still have a lot of muscle and nerve pain in scalp and face.

I am looking at doing one of the tests you suggest but live in the UK and am unsure whether I would be able to do them from this distance.

Thanks. Linda

Hi, Linda.

The methylation pathways panel is also offered by the European Laboratory of Nutrients in the Netherlands, and the Metametrix tests are available in the UK from

John Eccles House
Robert Robinson Avenue
The Oxford Science Park
Oxford OX4 4GP
Phone: +44 (0)1865 338045
Fax: +44 (0)1865 338100
Web site: www.nutritiongeeks.co.uk
Email: info@nutritiongeeks.co.uk

Best regards,

Rich
 

Catseye

Senior Member
Messages
109
Location
SW Florida
Hi Linda,

Have you ever had a CDSA (comprehensive digestive stool analysis) test done to check for dysbiosis? Is it possible you have yeast issues?
 

Vegas

Senior Member
Messages
577
Location
Virginia
I'm not truly sure what is happening to you, but you may want to consider cutting back on the methylcobalamin and folate a bit. While I don't take methyl donors everyday anymore, when I do it seems there is actually a backlog of "stuff" to clear out. This is probably a good reason to take them more regularly, in somewhat smaller amounts. Ramping up methylation beyond what my body can clear still creates adverse symptoms 16 months after starting regular use of methyl donors. The most prominent adverse effect continues to be headaches, and these cause pain in the forehead and exquisite sensitivity along the upper orbital rim. I wonder if this is similar to what you are experiencing. I continue to suspect these are sulphite headaches, but honestly I'm not sure. Best remedy continues to be epsom salt baths, which gives me the benefit of sulfate and magnesium. After focusing largely on chelation for most of this past year, the one thing I notice when I do take methyl donors more liberally, is that they seem to precipitate detox of something biological. I get gi symptoms from methylation supplements that I don't get from chelation.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi.

I posted here in April after having a very bad reaction to Country Life AD-B12. Fredd was kind enough to reply and suggested the Folic acid in this had caused a Paradoxical Folate Deficiency and that taking Folate and Methyl-B12 would help.

I couldn't tolerate much of either and began taking pinches of both. I have very slowly increased both over 8 months and the pain had eased considerably. Until I reaced 200mcgs Folate and 2,500mcgs of Methyl-B12.

After 15 days on that dose I've become deeply depressed ( so much so my dr. wants me to have an SSRI), anxious, irritable, have bad headaches, nausea and stomach problems.

On top of these I have all the awfull nerve pain and hypersensitivity in my scalp and forehead that I had before starting the pinches of Folate and B12. It is intolerable and I feel unable to cope with it.

I'm thinking some of the symptoms might be detox. But, don't understand why on a low dose the nerve pain eased only to get worse when the dose was increased. If it is a Folate Def. surely the higher the folate dose the better?

I stopped the supplements but the pain got worse so now I have reduced the dose again to a pinch but don't know
where to go from here?

ANY suggestions as to whats going on or what to do would be appreciated.

Wini

Hi Linda,

Some of this may in fact be out of balance with adb12. The Source Naturals Dibencozide has no folic acid and does not do methylation. The nerve pain and hypersensitivity sounds like an induced folate deficiency. This can be caused by glutathione, NAC, un-denatured whey, a number of medications including an oral diabetes med, folic acid, folinic acid. Check all your multi item supps and see if any of them have any of this stuff. In some people it can include vegetable food source folate which is folinic acid. Also, some nerve pain can be very intense when the nerves first wake up from being numb. After painful they retreat down to hypersensitive on the way to normal. Larger doses speed up that process. Reducing the doses don't stop or reverse the healing in any quick way. Just a few thoughts but no answers.