Natural high levels of B12 and B6

Does taking B12 apply to this.

No b12 is not a concern except apparently taking large amount is not helpful bc your body can only process so much at a time so I try to get my b12 up by eating foods throughout the day with b12 such as a slice of Swiss cheese a few time a day. But b12 is not a neurotoxin

Hi Ray,
Just noticed a comment by you or someone about the confusion surrounding B6. So, I looked at my first (and only at this point B6) lab report. It was for Pyridoxal 5'-Phosphate which is the form of B6 in EB-N3-5 from EMB Medical. My reading was 357.7 with normal ranges from 20 to a high of 125. So I was really off the chart. Hence, I never started the EBM product. Your labs are substantially different, and I suspect not for Pyridoxal 5'-Phosphate, but for Pyroxidine HCL which unfortunately I self-ordered for my pending test, not knowing the difference; your labs may be fine. But it will be interesting to see what my new reading says in any case. The first test was over $400 and Medicare would not pay for it, so I thought I would game the system at $69 by ordering it myself from Direct Labs (Quest). This is a situation where it appears neither we the patients nor the doctors know a whole lot, except that too much B6 is neurotoxic -- most agree on that, but not the form of it and how one has high readings; indeed, is it another medical issue altogether? In the meantime, we suffer. BTW, my zip code is 80134!

Frank

Hi, Frank

Confusing business, isn't it? Every time I think I'm approaching some understanding, it seems I get knocked back a quarter-mile or two. I did gain quite a bit from that article Moderator John sent earlier,

I have to cut this short. We're having an early supper this evening.

80134, eh? That's Parker, isn't it? I'm in 80210, near D.U.

Ray

I lived in 80210 as a student. Great part of Denver. Yes, it’s Parker for the last 8 years. For the 40 years before that it was 80237.

Ray - you sound like me sometimes in trying to find root causes of something when a couple of variables are introduced at the same time, even when you can’t control them or are things you don’t track (weather , daily hydration or salt/sugar/vitamin/caloric breakdown etc). I recently moved to a new state & doctors, and one that I really admire (cardiology) has a very strict medicine protocol he insists works and wanted me to start right away. I’ve been doing pretty well on the old stable meds I have been on for 20 years but he insists I can actually improve a bit and it would be so beneficial for total health. With all the idiopathic frustration we have with our Neuropathies here, I am very excited to have a doctor with ideas of actually improving something with my health! But, it involves taking me off TWO long-use medicines and replacing them with THREE somewhat newer drugs (so new that insurance companies won’t pay, but the pharmaceuticals have programs that you only pay $10) Anyway, I trust him, but we had to compromise; medicine changes and side effects can be difficult for me to adjust to and I fear how they can have the unintended consequences of somehow impacting the Idiopathic Neuropathy life I’m trying to balance and maintain. So we agreed to do the new 3 vs old 2 swap in a couple stages, giving me time to adjust to the first phase and hopefully feel good about being able to analyze any possible cause and effect to my TOTAL body, before proceeding to the second phase and taking time to analyze and adjust to that stage. Then we can test his things after 3 months of the total changes so we can see if his cocktail is having the intended outcome.
I know it’s not on the quicker timeline he hoped, but you know how difficult and long it takes to understand the cause and effect of anything on our mysterious idioneuropathies. In you trying to isolate and understand EB-N5 effects, you’ve made vs me think about trying not to introduce any variability of other factors during this time. I can’t control the weather but need to keep exercise and activity consistent, and though I’ve been advised to increase water consumption, I need to watch dietary changes. Outside of locking us up in a lab and have someone perfectly control the experiment, it’s pretty tough isn’t it?

Good morning, Frank

I feel like a bit of a nomad. I’ve had several zip codes since moving to Colorado. The first was Gunnison’s code (whatever that was), then three or four different codes before settling in beside D.U. I’m a New Yorker, born and bred, with a number of years living in L.A. How I’ve managed to settle down in 80210 is a mystery, but I’m happy I did. I’ve enjoyed – and continue to enjoy – my life in Colorado.

I could tie all this nomadic business to my PN. After a lifetime of living here, there, and seemingly everywhere, my PN has me quite content with staying put. (Put?) My partner and I have been discussing taking a three- or four-day Indian summer trip into the High Country. She’s all gung-ho for the idea. I find myself hemming and hawing. Why, after a nomadic lifestyle? I blame it on my PN.

And therein lies one of my greatest challenges: To quit hemming and hawing because of my disability (which is surmountable, compared to what others have to contend with) and stay focused on all the things I can do; in other words, Do all those things you love doing, and do them now while you still can!

Now that I’ve said this, I’m going to phone my partner and tell her to pack for a High Country road trip.

Have a great weekend!
Ray

Good morning, Debbie

“Outside of locking us up in a lab and have someone perfectly control the experiment, it’s pretty tough isn’t it?”

That made me laugh! It’s so true, though. I sometimes want to yell, “Oh, don’t make me have to be the decider! Please decide for me … “ I say that, yet my PN has only drawn one of my natural tendencies into high relief: the need to DO something. When my neuro doc told me that my PN was idiopathic, meaning there was nothing he could DO to help me and implying that there wasn’t anything I could DO either. At first, I accepted that. By the time I got home, I was grinding my teeth. I was muttering to my steering wheel, “No, no, no, no! There’s got to be something I can DO.” That’s when I started my at-home DIY doctoral program in peripheral neuropathy, all from the comfort of my living room (no tuition either). It was all in pursuit of an answer to the question: Now that I have PN, an incurable disease, what can I DO? (I’m no fool: I know “incurable” means incurable, but still … ) All of this leads to my current dilemma (significantly lessened by the literature Moderator John sent me yesterday) about EB-N5 and whether, when I reach the end of my 90-day trial in only two weeks, I should go for a second 90-day trial (what my neuro doc recommends). When I started my EB-N5 trial, one of my consoling thoughts (although continuing with diet and exercise) was: Here’s something I can DO! If EB-N5 is not harming me and may quietly be helping me, why quit DOING it?

See why your mentioning getting ourselves locked in a lab where others would do all the deciding made me laugh? For a second – for a split second – it was a delicious thought. 😀

Have a wonderful weekend!
Ray

Have a great time!!

So my B6 lab report came back from Quest Labs. I am perfectly normal, at least in this one respect. Result is 10.4 (lab normals range from 2.1 to 21.7). But, this is not the Pyridoxal 5-Phosphate version ordered by ucHealth which showed 357.7 (normals 20-125) so it is just more confusion. I think I need a road trip too!! This is all a ridiculous experiment which fixes nothing.
Frank