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B12/methylation Protocol Lifelong?

Messages
97
I'm fairly new here and have not been diagnosed with CFS/ME ( although I suspect I have some form of it.) I do have macrocyctic anemia. I've had only minimal testing done. So my questions are:
If your methylation cycle is messed up and you have genetic indicators MTHFR ++,CBS ++ etc., will you need to monitor the B12 and folate (methylation process ) for the rest of your life? Will I need to take b12 and folate forever? Up until now, I've always been fairly able to cope and bounce back from my health challenges. This time around it is pretty humbling experience.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Bead Dog,

I would say that assuming things are limited to body (as opposed to CNS - brain-cord) that a maintenance dose would be needed to avoid the same deficiencies occurring again. However, in my case and an unknown percentage of others, I have CNS damage and I need much higher doses of MeCbl, and maybe AdoCbl than many people and maybe L-methylfolate, to prevent further degeneration and at least functionally restore most of my abilities. I think that ultimately each persons dosages have to be determined by titration and that retitration my make a difference every now and then.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Bead Dog,

Have you looked at the SYMPTOMS LIST on the basics? Mark down all your symptoms. That will make it easier. There are peripheral neuropathies. There are central based neuropathies. Certain responses to AdoCbl/LCF can indicate possible damage in the limbic system of the brain. Feeling shooting electric pains down to your feet when you move your neck can indicate a type of cord damage. The patterns of some of the things, following the right and left dermatome (look it up, its fascinating and can tell you a lot) for a specific spinal nerve. Altered reflexes, absent reflexes, abnormal reflexes, lack of vibration sensation, lack of position sense, personality and mood changes, multi sensory hallucinations, lack of taste or smell of certain types such as strawberries.

Optic neuropathy is a very specific one. That is central. Cognitive and memory, word finding, etc issues are also central and can certainly be severely afflicted by deficiency and recover a lot of function in a lot of people. It depends on all sorts of things. These things may never completely heal if they are damage based. It may take lifelong relatively high doses to maintain gains.
 
Messages
97
Just checked out the list again. It'd be fair to say that I have had about 80% of those symptoms. Would getting an MRI be essential? the cost would be a real stretch for me right now. From symptoms I'd say CNS damage is there. So, kind of looking at the MRI as a big waste of $.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Just checked out the list again. It'd be fair to say that I have had about 80% of those symptoms. Would getting an MRI be essential? the cost would be a real stretch for me right now. From symptoms I'd say CNS damage is there. So, kind of looking at the MRI as a big waste of $.

Hi Bead Dog,

Take an MRI for who? Are you speaking 80% of the neurological or 80% of the CNS specific or 80% of all those lousy symptoms? I think an MRI is a waste because whether it has gotten to demyelinations or not the potential treatment is the same. This is a very serious matter you understand. Symptoms in that kind of quantity and matching percentage, however you cut it, can be very predictive. How old are you? What is your history?
 

Victronix

Senior Member
Messages
418
Location
California
Yes, I would expect to be on it for life, although you never know. The upside is that increasing your B-12 is one of the very few potential ways to offset the likelihood of disorders like Alzheimers. It can also help remove heavy metals. There are potential benefits to taking it that might make you want to take it for life, even if you didn't need to. Unlike something like Synthroid (synthetic thyroid) which I also have to be on for life, which has no such benefits.
 
Messages
97
Hi Bead Dog,

Take an MRI for who? Are you speaking 80% of the neurological or 80% of the CNS specific or 80% of all those lousy symptoms? I think an MRI is a waste because whether it has gotten to demyelinations or not the potential treatment is the same. This is a very serious matter you understand. Symptoms in that kind of quantity and matching percentage, however you cut it, can be very predictive. How old are you? What is your history?

I'm right there thinking it would be a big waste of money too. Money better spent on supplements and perhaps UAA and metals testing. I am speaking 80% of all those lousy symptoms. Many have improved since starting the methylation protocol this summer. It's been a bumpy ride. Some still remain, fatigue, especially post exercise. Occasional blurred vision, mostly when I am tired at night. Still have shooting pain in the legs, feet, sometimes arms. Get overstimulated very easily, lack of focus, fuzzy head memory, lingering gut issues and heat sensitivity.
I am in my early 50's. Childhood iron deficiency anemia, chronic tonsillitis, strep. Early adulthood kidney infections, high strep titers. Ten years ago I had mono, followed by candida. Some neck and back injury from a serious auto accident about seven years ago. This past year the macrocytic anemia (not pernicious according to blood work.) The only cause that I can figure for the anemia is depletion of B's from insanely high levels of stress (economic struggles at family owned business, very physically demanding job, a suicide and murder of associates) and perhaps dropping levels of enzymes (hormones) due to normal aging (the perfect storm?) So yes, I just want to make sure that no further damage takes place.
 
Messages
97
Yes, I would expect to be on it for life, although you never know. The upside is that increasing your B-12 is one of the very few potential ways to offset the likelihood of disorders like Alzheimers. It can also help remove heavy metals. There are potential benefits to taking it that might make you want to take it for life, even if you didn't need to. Unlike something like Synthroid (synthetic thyroid) which I also have to be on for life, which has no such benefits.

Alzheimers prevention is a plus. Two Aunts have that. It does run in the family, although my genes do not indicate that I have an increased chance for that. But do show increased odds for several autoimmune disorders... off the top of my head...lupus, MS, eczema...
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Bead dog,

Autoimmune problems appear to link up to the methytrap. MS appears to be a straight line result from deficient MeCbl, L-methylfolate and the rest of the Deadlock Quartet in a certain ration and probably some additional deficiencies. It is a first cousin to the Subacute Combined Degeneration I have. The difference being that SACD has a body deficiency as well as a CNS deficiency and SACD tends to be bilateral and MS more unilateral. Eczema can go away starting in days with healing startup.
 
Messages
97
Hi Bead dog,

Autoimmune problems appear to link up to the methytrap. MS appears to be a straight line result from deficient MeCbl, L-methylfolate and the rest of the Deadlock Quartet in a certain ration and probably some additional deficiencies. It is a first cousin to the Subacute Combined Degeneration I have. The difference being that SACD has a body deficiency as well as a CNS deficiency and SACD tends to be bilateral and MS more unilateral. Eczema can go away starting in days with healing startup.
Thanks Fredd. Initially my symptoms were more unilateral and still are predominantly right sided. I am just going to continue with the protocol and see what happens. I'm thinking I may do the Methylation Profile by Docotrs Data or the Methylation Pathways Panel by Vitamin Diagnostics. Anyone do either of these tests?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Bead Dog,

Some record keeping by you might be helpful for you down the road. Write down all the symptoms that are changing. Find out what is changing rapidly, slowly, or not at al or what is getting worse. After you collect this info for some days some patterns will likely emerge that would point towards the next item. When something starts working give it a chance to work. Also the strategy I used that worked was to keep finding things that increased healing. Things that stopped or slowed down healing were not helpful at that time. However, I had a streak of "right" picks 10 in a row by going after each successive largest group of symptoms. While these 10 items come from the same universe as the basics, they appear to be the things that I was most deficient of at the time. The symptoms combinations with nutrients on the stages of methylation pages might be helpful in seeing what some of the groupings look like.