Hi Mrs D,
I joined this list a few months ago. I have HCV, lymphoma and vasculitis. I was on interferon for the HCV, which triggered/exacerbated the vasculitis (altho' my current group of Drs dont agree with that) to the point that I almost became immobile. I stopped the interferon. Had a sural nerve biopsy that diagnosed the vasculitis, was treated with pred/cytoxan and rituxan. I still have bad PN but alot of fatigue and pain. My mobility is limited in that after a dys work, I really ant do much but come home and plop.
THats for background.

ANyway, this question is about Vit B levels. Back in 2009, my neurologist took Vit B1 and B12 levels. My B1 was low and the B12 was low normal. I started taking B1 supplements and I had been taking occasional B complex supplements and added a methylcobalamin.

My B12 and B1 had been retested and were ok. I dont always take the B12, maybe once a week. And I stopped the B1 entirely probably over a year ago.

I went to a new hematologist last week who repeated all the B tests. My B12 and B1 seem fine - B12 is 602 (Range 180-914) and B1 137 (Range 70-180).
bUT MY b6 WAS 764.5!!! (Range 20 -125)

I did a google and basically it seems that low levels can be associated with ischemic attacks etc. High levels are found in autistic children.

I want to be able to question my doctor about this at my follow up.

DO you think this was lab error? I'm not metabolizing it properly?

My B complex that I do take daily has 40 mg. Although this is listed as 2000% of the mdr, I saw that B6 excess can cause PN and a toxic dose level is set for 100 mg daily. Well above my dose.
I will stop this multi B.

Do you think this is alarmingly high?

Thanks,
Donna

Yes, I do think your ranges are number # 1 the highest ever reported here for B6.

I'd stop the complex pronto.

As to what is going on? Well, some people cannot convert B6 to active P5P, so it may build up. But still, I've seen ranges in the low 100's on the net here and elsewhere. 700+ is mega elevated.

You can take Benfotiamine daily (the better B1) and methylcobalamin like you are doing. 600 is in the okay range. But a bit higher may be what your body could use more efficiently. This is not harmful, and worth a try. (That range you gave going down to 180?...that is horrible... people can have significant problems
at 180.)

Yes, high B6 has been found in autistic children, and the reasons are not clear.

I'd make sure you are getting enough magnesium, as magnesium works with B6 in many enzyme systems.
Magnesium is lost with prednisone therapy.
This is my magnesium thread... foods, the right choices for oral and some topical creams if you prefer:

http://neurotalk.psychcentral.com/thread1138.html

And yes, lab errors do occur... I'd get retested. Sometimes factitious highs come from the red cells bursting if the sample is not taken properly, or handled properly. This is common with potassium readings, since the red cells hold lots of potassium too and can burst and release it into the serum.
There is a place called Spectracell that tests only red cells and tends to be more accurate. But I don't think insurance pays for them.

http://www.spectracell.com/

The chemo agents damage your DNA to some extent. So consider taking some acetyl carnitine to help with that damage. It will enhance your mitochondrial actions and improve cellular functioning if damaged by the chemo. 1-2 grams a day, divided doses may help. Start at 500mg a day and work up if you need to.

400 to 550 B12 levels are suspect.
The 600 range is borderline, IMHO
It should be climbing close to,
or at..... the 4 figure range.

Thanks. I definately will stop the multi B pronto and just stick with the methylcobalamin. Jeepers I feel like I am being poisoned. Eek.

I was wondering previously about the Acetyl carnitine. I guess its worth a shot.

I had tried lipoic acid twice for the PN and perhaps coincidently, but both times, I felt that within a few days I was feeling worse. So I stopped and now I am reluctant to retry. Although this seems so contrary to everything I see about it. (Also, I thought that I wouldnt/shouldnt feel any difference within days - dont you think it would be longer?)

Happy Fourth!

Donna

Lipoic acid also helps with mitochondria functions.

Why don't you start the acetyl carnitine and see what happens?
If that starts to improve your sensations then you can add the lipoic back in.

I'd consider some antioxidants too which might help your vasculitis. Curcumin has shown potential in improving the lining of blood vessels:

http://www.ncbi.nlm.nih.gov/pubmed/20955148

You will need an enhanced absorption type for this.
One good version is this one that is also affordable:
http://www.epic4health.com/cuul500mgena.html

Benfotiamine:
http://neurotalk.psychcentral.com/post653193-4.html

Acetyl Carnitine:
http://neurotalk.psychcentral.com/post653568-5.html

Hi Mrs D,
You are amazing.

My questions:

1. Sometimes I take lysine if I get a fever blister. I was just looking quickly at some of the stuff you sent and it says that we make carnitine from lysine? So, for instance, does one take both? Of if we take lysine, does that make it easier to make carnitine?.

2. Curcuma - tumeric - I have alot of gallstones. Is this contraindicated?

3. THis is the question I wanted to ask you when I joined but Im not sure how to word it. And maybe it is not something that you can give an easy or quick answer to. Let me try to put this is an intelligent format:
My vasculitis problem required treatment with immunosuppresives. I was attacking my own blood vessels. And the way I understand it, the lymphoma treatment is immunosppressive also. Im making a preponderance of certqin B lymphosites Both use some of the same drugs - rituxan, cyclophosphamide and pred.

ANd heres where maybe I am grossly simplifying matters -My understanding is that antioxidents provide protection against oxidative damage, but do they also "stimulate" the immune system? I've heard the explanation (esp regarding venus fly trap for my cat!) that certain treatments "support" the immune system. But someitmes I am afraid of certain supplements that I think may send my system into further overdrive.
Or is this concept of "stimulating the immune system" sort of misleading?

Thanks,

Donna

Carnitine biosynthesis requires several steps.

http://en.wikipedia.org/wiki/Carnitine

If any of these are damaged, the enzymes helping with its conversion fail, then the carnitine is not made.

We know of one drug which interferes with this, and it is called Depakote. Others are the antivirals used for treating HIV positive people. Nutrient depletion is still an infant science...so many things may still be out there and unevaluated yet.

Regarding the curcumin:
from http://lpi.oregonstate.edu/infocente...cals/curcumin/
There are other antioxidants out there --but curcumin is the most studied for endothelial protection. It is equivalent to statins for this use. Which brings up the subject... Statin drugs are known contributors of PN and other serious things. If you are taking one please discuss this with your doctor.

Notice from the Wiki link that Vit C is necessary to making internal carnitine. Also it is thought that with age this system may fail to provide it reliably and with chemo damaging systems and the cancer taking the nutrients from normal cells, it may be low for those reasons.

Other antioxidants include Vit C, vit E, astaxanthin, grapeseed extract, citrus bioflavinoids, and many foods like blueberries and strawberries among other highly colorful fruits and veggies.

Thanks alot for the info!

Donna