My nueropathy symptoms have completely resolved.
I can only guess at what helped... but I'll give an abbreviated history and mark the point where I saw improvements.
Nov 2004 I suffered a pulmonary embolism, during testing they found high homocysteine levels which is often linked to MTHFR, but they didn't pursue anything with the genetics on it, simply recommended I take folic acid, b6, b12 (and of course, not knowing better, I took the wrong forms).
My mother couldn't remember 'homocysteine' to talk to her doctor, but knew it was related to b vitamin deficiencies so got tested for b12 and got tested low. In turn, my sister, five aunts, and twenty cousins subsequently got tested and ALSO tested low for b12 (think there's something in the genes???).
In Apr 2005, I went from recovering from my PE to a worsening of symptoms, developed PEM, struggled with severe fatigue, suffered severe dizzy spells, foggy mind, the works... but ALSO the nueropathy started. It progressively worsened and puzzled the doctors until I was bedridden in Jan of 2006. (shortly after this, my mother was diagnosed with b6 toxicity). My homocysteine levels were normal at this point, and my b12 levels were high.
In Jan 2008, I land at Mayo clinic and they (as well as all other doctors) still refuse to test me for b6 toxicity even though at this point, I'm still taking it religiously. They tell me I have 'chronic pain' and recommend I go to pain rehab clinic which was basically GET/PACE... [whole rant deleted] - basically I insulted their intelligence and put their credibility on the line if they didn't test my b6 levels.
I was toxic, exceptionally high. I wouldn't know where to look to get the test results, but for some reason I'm thinking it was in the 900's range. Their only recommendation was to stop taking it. They didn't know how to treat it, how to clear it, what the long term impacts were. At this point, they basically wanted me to disappear. (I assume they didn't like it that I proved them wrong).
As I kept posting my concerns and issues on another list board, someone brought up MTHFR and recommended methylb12 to me... so I started there and did have some energy recovery, but I was at massive amounts of b12 (20 mg per day spread throughout the entire day) to get there, so I thought there might be more to it. But it was the first step down that path. Still no help on nueropathy symptoms.
In 2010, my b6 levels were still high though they had dropped quite a bit.
In 2011, I had my hysterectomy.
In 2012, my b6 levels were normal. - still no help on the symptoms though.
In 2012, I had to have my gall bladder removed which helped with other new, unfun symptoms.
In 2012, I started trying methylation treatment on my own... then with a naturalpath, then with an Internist MD who treats chronic health issues. When I started it on my own P5P was at 50 mg once per day. methylfolate was at 2 1/2 mg, once per day.
IMPROVEMENTS - Within two weeks of starting those two supplements, I noticed an improvement as to temperature sensation.
IMPROVEMENTS - Within two months my nueropathy was gone. I had my first real 'remission' experience while on methylfolate and methylcobalamin.
Maybe a couple of months later (that whole start low, go slow)... I started taking epsom salt baths, altering diet (gluten free, dairy free); etc. I switched to dentures from a highly filling-filled mouth with amalgams, and added several more supplements (ALC, NAC, Vitamin C, Vitamin D, as well as Thyroid meds).
While the nueropathy hasn't returned, I've had other issues flare up, and periods of remission and keep tweaking my supplement regime... right now I take less p5p - my multi has 20 mg of Pyridoxine HCI (another form of b6) and 3.4 mg of P5P. I tolerate P5P well and never had an issue (that I could trace to it); but taking it with a multi gets me the adenosylcobalamin that I was also looking for after reading about the quartet deadlock. I'm not sure I tolerate the multi super well, but it's easier right now to stick to it until I figure some more things out.
I can only guess at what helped... but I'll give an abbreviated history and mark the point where I saw improvements.
Nov 2004 I suffered a pulmonary embolism, during testing they found high homocysteine levels which is often linked to MTHFR, but they didn't pursue anything with the genetics on it, simply recommended I take folic acid, b6, b12 (and of course, not knowing better, I took the wrong forms).
My mother couldn't remember 'homocysteine' to talk to her doctor, but knew it was related to b vitamin deficiencies so got tested for b12 and got tested low. In turn, my sister, five aunts, and twenty cousins subsequently got tested and ALSO tested low for b12 (think there's something in the genes???).
In Apr 2005, I went from recovering from my PE to a worsening of symptoms, developed PEM, struggled with severe fatigue, suffered severe dizzy spells, foggy mind, the works... but ALSO the nueropathy started. It progressively worsened and puzzled the doctors until I was bedridden in Jan of 2006. (shortly after this, my mother was diagnosed with b6 toxicity). My homocysteine levels were normal at this point, and my b12 levels were high.
In Jan 2008, I land at Mayo clinic and they (as well as all other doctors) still refuse to test me for b6 toxicity even though at this point, I'm still taking it religiously. They tell me I have 'chronic pain' and recommend I go to pain rehab clinic which was basically GET/PACE... [whole rant deleted] - basically I insulted their intelligence and put their credibility on the line if they didn't test my b6 levels.
I was toxic, exceptionally high. I wouldn't know where to look to get the test results, but for some reason I'm thinking it was in the 900's range. Their only recommendation was to stop taking it. They didn't know how to treat it, how to clear it, what the long term impacts were. At this point, they basically wanted me to disappear. (I assume they didn't like it that I proved them wrong).
As I kept posting my concerns and issues on another list board, someone brought up MTHFR and recommended methylb12 to me... so I started there and did have some energy recovery, but I was at massive amounts of b12 (20 mg per day spread throughout the entire day) to get there, so I thought there might be more to it. But it was the first step down that path. Still no help on nueropathy symptoms.
In 2010, my b6 levels were still high though they had dropped quite a bit.
In 2011, I had my hysterectomy.
In 2012, my b6 levels were normal. - still no help on the symptoms though.
In 2012, I had to have my gall bladder removed which helped with other new, unfun symptoms.
In 2012, I started trying methylation treatment on my own... then with a naturalpath, then with an Internist MD who treats chronic health issues. When I started it on my own P5P was at 50 mg once per day. methylfolate was at 2 1/2 mg, once per day.
IMPROVEMENTS - Within two weeks of starting those two supplements, I noticed an improvement as to temperature sensation.
IMPROVEMENTS - Within two months my nueropathy was gone. I had my first real 'remission' experience while on methylfolate and methylcobalamin.
Maybe a couple of months later (that whole start low, go slow)... I started taking epsom salt baths, altering diet (gluten free, dairy free); etc. I switched to dentures from a highly filling-filled mouth with amalgams, and added several more supplements (ALC, NAC, Vitamin C, Vitamin D, as well as Thyroid meds).
While the nueropathy hasn't returned, I've had other issues flare up, and periods of remission and keep tweaking my supplement regime... right now I take less p5p - my multi has 20 mg of Pyridoxine HCI (another form of b6) and 3.4 mg of P5P. I tolerate P5P well and never had an issue (that I could trace to it); but taking it with a multi gets me the adenosylcobalamin that I was also looking for after reading about the quartet deadlock. I'm not sure I tolerate the multi super well, but it's easier right now to stick to it until I figure some more things out.
