Some Answers, More Questions

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Re: Some Answers, More Questions

Postby NHE » Tue Jun 30, 2009 3:30 am

Hi LoveActually,
You can learn a great deal about vitamins and other supplements from websites such as Healthnotes. Getting there is usually a two step process though since they sell subscriptions to other websites which then provide free access. One such site is http://www.supersup.com. Click on the Healthnotes link on the left side of the page and you're there. The information on Healthnotes is usually well referenced and it makes a good jumping off point before delving into articles on PubMed when learning about a particular supplement.

For what it's worth, I take a B complex. B vitamins are important in many aspects of physiology. I noticed a difference the first day I started taking them but haven't noticed much since.

NHE
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Postby LoveActually » Tue Jun 30, 2009 6:36 am

Thank you NHE.
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Postby jimmylegs » Mon Jul 13, 2009 7:24 pm

hi LA i pm'd u back :)
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Postby LoveActually » Sat Jul 18, 2009 9:04 am

JL,

I never received the PM. I wonder if it got lost in cyber space somewhere. If it's not easy to resend, don't worry about it.

I've had two shots of B12, the second just being yesterday & the first was 2 weeks prior. I do feel a difference in my energy levels but other then that, all is the same. I'm not sure how quickly the shots of B12 raise your levels to a normal amount so maybe it's going to take more time.

I had an appt yesterday to get the results of my MRI from the Doc actually looking at the scans. Not to my surprise, someone screwed up on the scheduling (the doc is on vacation) and I had to reschedule for the 28th of this month. Part of me was pissed but I think right now I'm in the "I don't give a fuck about what I have" stage so I didn't mind too much.

I know there's a spot/cluster/lesion or something, I just have no idea what it is or how it's affecting me. We'll just have to wait and see.
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Postby jimmylegs » Sat Jul 18, 2009 11:29 am

hi LA i'll just post it here :)

when i looked into shots in '06, all i could get was the cyanocobalamin form. the cyanide gives the cobalamin product a longer shelf life.

there are better forms of supplemental b12, such as methylcobalamin. are your shots methylcobalamin? or hydroxocobalamin? if not, you can get sublingual methylcobalamin products. they come in smaller batches, a bit more pricey, but at least your body isn't dealing with the cyanide economics.

i second (third?) the idea of getting a b-complex into the mix. give that b12 something to work with. b50 is a good bet.

also, all multivitamins are not created equal - if you can find a whole food natural source multivitamin/multimineral, you will be further ahead than with synthetics.

two final questions:
what were the units for your 180 results?
do you have iron results by any chance?

that's it for the moment :)
JL
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Postby LoveActually » Sat Jul 18, 2009 12:30 pm

JL,

Thank you for the info. I'm not sure if I'm getting methylcobalamin or hydroxocobalamin shots but I'll be sure to ask the next time I go in. Cyanide huh, sounds lovely! :wink:

Before I started the B12 shots I bought some B12 but have since stopped taking them. A. Because I'm getting the shot and B. They made me vomit. I'll pick up some B50 next time I'm in the store.

The vitamin I have is just a generic brand but I'll look into getting a natural source for a multi vitamin.
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Postby LR1234 » Sat Jul 18, 2009 12:50 pm

I like the source naturals 5mg sublingual methylcobalamin. (I find they are great)
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Postby jimmylegs » Mon Jul 20, 2009 7:49 am

heya LA, glad to help, and i hope you can get your b50 complex down without puking - good luck! (ps what kind and size of b12 pills were you taking when they made you sick?)
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Postby LoveActually » Mon Jul 20, 2009 10:13 am

JL,

I forgot to mention that the units for my 180 results just says pg/mL. So...I'm guessing that tells you nothing. :) And I searched my lab results to see if they had iron on there but I couldn't find anything.

The B12 pills I was taking were the Nature's Bounty brand. They were Sublingual 2500 mcg. They were cherry flavored and it said to place them under my tongue for 30 seconds before swallowing. The directions said to take one or two a day. I opted for the two but maybe that was a mistake.
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Postby jimmylegs » Mon Jul 20, 2009 1:52 pm

hey there LA, actually the pg/mL does tell me something - that your 180 converts to 133 pmol/L. that's pretty darned low!
try to aim for a minimum 550-600 pg/ml. i aim for at least 450, and preferably 500 in pmol/L
as for the iron, does it say anything about ferritin?
those nature's bounty sublinguals are the cyanocobalamin form, are they not?
i personally had fruit flavoured methylcobalamin sublinguals early on, but they made me sick. i had 2000mcg strips and at first i would cut them in half, i felt like the sweetening was making me ill. then i switched to a more flavourless sublingual by natural factors, and did better with those. they're 1000mcg and i left it at one per day and they seemed to do the trick - my highest level was 642 pmol/l (870 pg/mL). before that my lowest level could not be detected - their test was sensitive down to 75 pmol/L (100 pg/mL) and my lab results came back "less than 75".
if you take too much b12 at the wrong time of day, it can mess with your night's sleep too. 5000 mcg sounds over the top to me for sure! i've heard of people having trouble taking just 2000 per day, if they take it in the morning.
hth,
JL
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Postby LoveActually » Tue Jul 21, 2009 8:30 am

Thank you for all the info JL. Wow, your levels were extremely low. Did anything change for you once you started building your B12 back up? Or did some symptoms fade?

Ferritin is not mentioned on my lab results.

The Nature's Bounty pills are cyanocobalamin form.
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Postby jimmylegs » Tue Jul 21, 2009 9:59 am

hey no probs, LA :)

actually all my success with isolated b12 supplementation was in the years prior to dx. after dx i realized i was dealing with something much more detailed and complicated than a single nutrient.

i used to get increasing numbness, then loss of functionality, take b12, and feel fine again. stop taking b12, numbness and impairment return, take b12 for a couple days again, etc etc etc.

prior to dx i felt the numbness coming on. i started taking b12 regularly to get rid of the numbness for good - wanted to be in tiptop shape for my academic exchange to australia.

the b12 wasn't working this time.

after my travel shots and a nasty wipeout on a snowboard in jan 06, i ended up in the hospital, and by the night of my 'bon voyage' party at the start of feb, i was hostessing from flat on my back with a wicked post-LP headache (pretty wierd party pics) and letting my guests know that it was a 'NON-voyage' party.. sigh..

i was significantly impaired for weeks, until i'd done enough reading to start to get a grasp of how many deficiencies i was probably dealing with, in addition to b12.

i saw the greatest improvement when i started megadosing b-complex vitamins and a number of other nutrients per a modified 'klenner protocol'. at my worst i walked funny, had that feeling like my legs were full of concrete, i was numb from the shoulders down, i couldn't grip anything, i couldn't target objects i was reaching for (lost position sense, probably related to vitamin e status), spastic muscles, spastic wrists (later identified as probable hypocalcemia) i couldn't breathe properly, i had the ms hug, i couldn't play guitar, couldn't type, couldn't wash my own hair, made ridiculous scribbles when i made credit card purchases, etc etc etc.

3 days into the more comprehensive nutritional megadosing that i did with the klenner protocol, i felt my hands come back a bit, and ran to the computer to see if i could type - and i could. play guitar? yes i could. i'm still not as good as i used to be with full sensory, but i'm working more on playing without looking, in spite of the leftover numbness.

i continued to learn about supplements and made drastic changes to my diet. i got better and better but plateaued with that leftover numbness in my hands, and i have caused certain problems over the years by having been a guinea pig in terms of biochemistry, and megadosing things without fully understanding the consequences first.

have learned a lot and continue to do so. still not on any meds to date.

HTH,
JL
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Postby jimmylegs » Fri Jul 24, 2009 10:25 am

LA, low calcium can contribute to seizure (and low b12).
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Postby LoveActually » Tue Jul 28, 2009 1:37 pm

I'm going in today for my Brain MRI results. I also have a few questions about my B12 shots and I'm going to ask her why she thinks my B12 levels are low in the first place. I also have a few questions about the seizures I'm having and many about the MRI itself but I may have more after hearing the results.

I'll post my findings here. Wish me luck!
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Postby jimmylegs » Tue Jul 28, 2009 4:15 pm

heya LA, if you came back with a 180 result, that is low no question from where i sit.
i'll check back to hear what comes out of your visit - good luck!
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