Neuropathy and severe inflammation from Methylation Supplements (ATN Dannybex&others)

[lampkld2]

I want to make this thread for us to discuss our experiences, trials, etc with methylation supplements along with our symptomology, labwork etc.

Hopefully we can find some common denominators and figure what is going on.

Going to bed, but tommorow I will post my experience to get things started.

Here is some of the information I think we should start off to get the discussion rolling:

1. Nature of illness (Length, Symptoms, What makes it better and worse etc)

2. Lab anomolies (even list borderline low or high, EX. I have borderline low white count>

3. Response to supplements including methylation protocol. (list exact supplements)

4. Subsequent response (how have the startup effects persisted if at all.

5. Anything else.

Also if we could get Fredd and Richvank to jump in here, that would be great.

Lamp

 

[Rosebud Dairy]

Mods, please remove if this link violates any rules.

http://www.b12d.org/content/b12-signs-symptoms-assessment

I found this handy assessment this week. It deals only with B12, not really with folate or potassium, or even mention methylation that I could find, but it DOES help put a number on things.

When I was at my worst, and was not treated for B12 or folate, and did not yet know that I have a C677T SNP, my number on this scale was over 100 -- probably most of us who are low methylators were about the same.

I am now on the Active B12 Protocol -- WHILE avoiding FOLIC acid in ALL things - supplements and fortified foods.
Jarrow Mb12 - 15 mg/day split into three doses - sometimes I go higher as test doses
Solgar Metafolin - 12 mg/day (minimum) split into three doses, may continue to titrate up past 15 mg per day
Potassium Gluconate - providing 597 mg potassium - split into three doses, sometimes more, titrating up, watching for variations that go along with female hormones.

still get foggy the next morning after vegetable heavy meals - beans and rice, or beans, veg, and grass-fed meat, for examples. If white rice is used, it is thoroughly soaked and then rinsed several times (not sure how well that worked), as usually the fortified vitamins get applied to the outside of the grain. Sticking to brown rice seems to do better. Any breads are gluten-free non-fortified foods.

Am doing much better on the ABP after only 6-8 weeks, even after running out of my vitamins at first as I wasn't really ON the ABP, just messing around and trying to figure out what I need to take - before I got back on the boards, and even after consuming folic acid much of that time. I was visibly improved at the last two doctors visits - Two doctors were pretty amazed at the many positive differences.

I did have some potassium drops/crashes, which I figured out. I have had a run-out-of-vitamins crash, and I think I have had a folic acid/paradoxical folate deficiency crash, which was the point at which I decided to go with NO folic acid indefinitely.

I notice I do better when I eat a primarily a meat/eggs/fish/dairy diet high in fat. I did pretty well before on the Specific Carbohydrate Diet (no grains, no gluten........and AHA! no folic acid, and low in natural vegetable folates -most got cooked out, I think.)

Right now, the most bothersome symptom, whether from paradoxical or start up is terrible left leg pain. The whole leg feels like it is being squeezed. I have noticed a bit of foot drop.

 

[dannybex]

Hey Lampkid,

Glad to see you're hanging in there...still trying to figure it out. It is a complex puzzle, and I'm doing worse in some ways, but better in others, so I'll throw in my two cents.

I found out late summer that I have adrenal burnout -- which is just prior to adrenal exhaustion/insufficiency -- where one's cortisol can be high at times, and then very low, and usually at the wrong times. So that might explain one's oversensitivity or overreactions to the methylation protocol. I lost a lot of muscle last year due to catabolism from the high cortisol, but also due to the fact (according to Rich) that I wasn't able to use carbs or fats as well because of the methylation block.

But the adrenal burnout situation has me on certain supplements to calm them down, and increase certain minerals. Zinc is one of them -- and I recall you had a negative reaction to that -- but the amount I'm taking is tiny -- 8mgs -- along with other minerals -- and I had to slowly increase that over a couple of months. I was very low in zinc, and the specialist I'm working with thinks I have a hidden copper toxicity -- which means one can have symptoms of high and low copper at the same time. Hard to explain, but suffice to say that if one takes too much zinc (according to some of these adrenal folks) it can release too much stored copper -- causing negative symptoms -- but can also lower sodium as well, which may already be low.

I'm not sure, but did you have a bad reaction to b6? I had this -- always got tingling and numbish feelings when taking even the smallest dose of either b6 or P5P. Again, I had to start slow, with small doses, but found that VITAMIN B2 helped very much with decreasing and at times eliminating the tingling from the b6. I make sure I take b2 (about twice as much as the b6) every time I take b6.

Now just in the last week, I've got the 'stocking and glove' tingling back in my toes at times. Haven't had that in about four months. It isn't present all the time, but at various times. I am speculating that this is possible a result of two things: B12 deficiency -- I haven't been taking b12 regularily (I was doing injections off and on), and probably did 2-3 in January, and one on the first of this month (and took too high of a dose -- 2mgs) which may have even given me increased tingling, but that subsided. The other thing was I was adding hijiki (seaweed) to my meals for about a week prior, only to find out that hijiki has the highest levels of arsenic of all seaweeds. B12 and folate help eliminate arsenic........

I know this is kind of rambling, but I hope it's helpful.

Dan

p.s. I can tolerate methylfolate now (200-400mcgs), mb12 (in small doses and need to stop for a few days at times or I get too revved up), zinc (small doses), and AD-b12 (which was never a problem).

 

[determined]

here's my list

1. Length, symptoms, what makes me better, worse: I started showing symptoms in high school (3 decades ago). Irritiable bowel, reflux, headaches, endometriosis. The symptoms progressed to complete intolerance of almost all foods and man-made chemicals (severe multiple chemical sensitivity). The weakness/fatigue began suddenly on day in December 1991 and, up until recently, has been with me to some extent.

Being treated with chemotherapy for breast cancer was the single most effective "treatment." It was like a switch had been thrown, turning off the weakness/fatigue. I've been taking doxycycline for presumed lyme disease for YEARS and I think that has helped with the MCS. Surgical menopause was also helpful I believe (Rich has mentioned an oxidative recycling mechanism and I think having even hormone levels has helped).

2. Lab anomolies: Only one, which is escaping me now, but it means that I may have a deficiency of B12 (?)

3. response to supplements: after a period of intensification of symptoms (increased sleepiness, but not weakness and fatigue, headaches, nausea) it was again, like flipping a switch. The weakness/fatigue was much reduced. I did, however, become more chemically sensitive. I am still enjoying this after a year of staying at the same, incredibly small dose (I believe that, rather than fixing a deficiency with the methylfolate and mB12, my immune response to them has been changed - I think of my doses as being similar to allergy shots). Here is my description of the small doses I am taking: http://forums.phoenixrising.me/show...ERY-low-very-slow-results&p=173804#post173804

4. subsequent reactions: the weakness/fatigue is still much reduced but I am more chemically sensitive now. This started up shortly after taking the supplements and this is why I'm afraid to change my dose.