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-   -   Mrs D, Rose, anyone? I need some guidance (https://www.neurotalk.org/peripheral-neuropathy/249-rose-guidance.html)

dahlek 08-29-2006 06:11 AM

Mrs D, Rose, anyone? I need some guidance
 
I've been going over my meds and supplements w/a fine tooth comb and I noticed that in concert, the suppls. have in total have an awful LOT of B-6 and Vit D.

I realize large quantities are often useful...but, at what point do these border on the toxic?

Also, since I'm on so many different meds for different things, I've a feeling that the minor s/e's of some are beginning to gang up & add up. Any idea if a doc is the kind of person I see, or someone in a field more eccentric?

You know me, point me in the right direction...all I'm finding to date is inconsistent.

Heartfelt thanks in advance! - j

teri 08-29-2006 04:58 PM

No idea about vit d but my neuro said not to exceed 20 mgs of B6 - even though people usually take up to 100!!

Kitt 08-29-2006 05:27 PM

Hi, 2 mgs of Vitamin B6 is considered safe for me. 10 times the RDA limit is a mega dose for people with CMT. Perhaps it would be different for you.

Kitt

Wing42 08-29-2006 06:45 PM

The iHerb natural health information site
 
These pages are invaluable:

http://www.iherb.com/store/ProductsL...rbs&cid=health has links to all types of information.

http://healthlibrary.epnet.com/GetCo...chunkiid=33802 is for herbs and supplements

The B6 article is at http://healthlibrary.epnet.com/GetCo...chunkiid=21852 . The maximum safe dose for adults is 100 mg, but I wouldn't get near that. The theraputic dose is about 30 mg and the RDA is under 2 mg.

The vitamin D article is at http://healthlibrary.epnet.com/GetCo...chunkiid=21657
The recommended dosage depends on what for and in combination with what. The RDA is about 400 iu ( 10 mcg ). The upper limit is about 2,000 mcg. I'd try to stay about with the RDA, or maybe a little higher if you take supplemental calcium. Vitamin D can be toxic and can interfere with drugs. The entire article is well worth reading.

As a general thing, we don't digest and process food as efficiently as we age. Also, disease states (like PN) often respond well to supplemental vitamins, mineral, amino acids, herbs, and plant extracts. That being said, anything in excess is toxic, and a balance is important. Also, interactions are important.

As an interaction example, there is a lot of research supporting the beneficial effects of fish oil for inflamation, neuropathy, arthritis, and skin and hair condition. However, fish oil slows down blood clotting time. if you take prescription blood thinners or supplemental daily aspirin, too much fish oil could just be enough blood thinning to cause a stoke or other hemmorage.

For a co-factor example, if you take supplemental calcium without having enough vitamin D, the calcium cannot be integrated into bone and nerve tissue, and is so excreted by the kidneys. Depending on amounts, this would increase the risk of painful kidney stones. If you take supplemental calcium, you MUST supplement with the proper amount of vitamin D, or go out in the sun daily, to the point of increasing the risk of skin cancer.

In summary, before taking any supplement, learn about it, about interactions with it, optimal doses, etc. Then procede by all means, but cautiously.

I hope this helps.

Kitt 08-29-2006 06:51 PM

I did a little further checking and at very hight levels (200 mg or more per day) Vitamin B6 can eventually damage sensory nerves leading to numbness in the hands and feet as well as difficulty walking.

Kitt

dahlek 08-30-2006 10:08 AM

Thanks everyone!
 
I think I'll have to get all my docs on the same page. Even tho I include a summary list of the types of vitamins & suppls. I take, I've not included attachments of what's included in each one...knowing a doc's short-attention span. Can anyone lend me a short whip and a portable chair for the task?

Last week I'd sat down and listed how much of each was in each pill. The combination of each's recommended doses added up to FAR more than what you guys references are indicating. Not to mention a heap of pills! All in all confusing as this doc is saying 'Take more of this' and another 'more of that' & none of my blood tests show any panel for THIS stuff. Am I correct in assuming you just have to kind of cobble together a combo that's best giving you what YOU think you NEED?

More is better in some cases, the confusion for me is figuring out which whats' to get more of? Aside from B-1 & B-12, of course.

Gosh doing this for my animals was far, far easier to comprehend! Best always! - j

jccgf 09-05-2006 01:35 PM

Here is what the Physicians Desk Reference says about B6:

Quote:

Doses of vitamin B6, typically in the form of pyridoxine, of up to 200 milligrams daily are generally well tolerated. One report showed severe sensory neuropathy in seven adults after pyridoxine intakes that started at 50 to 100 milligrams/day and were steadily increased to 2 to 6 grams/day over 2 to 40 months. None of the subjects in the report showed sensory neuropathy at doses of pyridoxine of less than 2 grams/day. There is one report of a woman who had been taking 200 milligrams/day of pyridoxine for 2 years without showing sensory neuropathy who developed sensory neuropathy after she increased her pyridoxine dose to 500 milligrams/day. There are rare reports of sensory neuropathy occurring at pyridoxine doses in the range of 100 to 200 milligrams/day. The Food and Nutrition Board of the Institute of Medicine of the U.S. National Academy of Sciences has concluded that reports and studies showing sensory neuropathy at doses of pyridoxine less than 200 milligrams/day are weak and inconsistent, with the weight of evidence indicating that sensory neuropathy is unlikely to occur in adults taking pyridoxine at doses less than 500 milligrams/day.

Other adverse reactions reported with high doses of pyridoxine, include nausea, vomiting, abdominal pain, loss of appetite and breast soreness. Rare cases of pyridoxine-induced photosensitivity have been reported.
http://www.pdrhealth.com/drug_info/n...vit_0215.shtml

There are certain conditions where even MORE B6 may be needed, such as B6 deficiency or dependency conditions...there are some links here~ http://jccglutenfree.googlepages.com/vitaminb6

I think 50mg P5P would be adequate for most people unless there is a special need (deficiency or dependency conditions). There is some data to support that the risk of adverse affects are minimized by using the P5P form of B6. I actually found that in print somewhere recently... but now I can't remember where.

Cara

dahlek 09-06-2006 06:53 AM

Cara thanks..
 
I've tried to be soo careful..and well, wham! I really did it to myself! I was taking almost 700 mg between the super-multi and a b-complex. Since I've stopped, I'm feeling better, with the gravelly/tingle stuff on the fingertips and a bit of extra somethings in my insteps.
I really can't think what was going on in my mind! I think I was so focussed on the B-1 & 12's that the rest of the brain went into outer space.
I have to ask tho, why didn't the Docs notice this? I list all this stuff on my meds sheet [updated whenever there's a change...& its lengthy]. There are notes in my records questioning asorbtion problems..maybe I just thought It wouldn't get taken into the system...
Besides you folks, is a nutritionist one to formulate the perfect combo? I'm beginning to feel scattershot in my approach. When I'd thot I was methodical.
Soo, I guess I've got to re-read all the vitamin stuff I've ever learned [& hopefully BT stuff] soon.
What an adventure! Thank you all! - j

MelodyL 09-06-2006 07:54 AM

when you return from Jupiter, give me a call. We'll go moon-hopping.

be well,
Melody

jccgf 09-06-2006 09:09 AM

It can be hard to figure out how much of what you are getting. We have actually used a spread sheet, and then it can be hard to find the right types of supplements to add up to the right amounts between stand alones and blends.

The doctor we worked with recommends a very basic multivitamin, and then you add in all the 'boosts' individually....which can of course add up to taking many separate things (which often means low compliance). I think you would do best to find a doctor who specializes in nutritional treatment~ like a DAN! doc or Integrative medicine type doctor.

Wouldn't it be nice if we could just order how much of everything we need (with a doctor who could tell us) and order it up in one pill? Of course, that wouldn't address the things we are supposed to take SEPARATELY.

I'm glad you are feeling better.

Cara

dahlek 09-06-2006 09:22 AM

Between all the meds and vites...
 
I have to admit that after scrutinizing any part for over 2 minutes, I DO get cross-eyed, when I push it, I get brain-fried. Few humans have the 'gift', I am thinking. I've always admitted I do NOT. The 'easy out, one-pill' concept does appeal, but we all know reality intrudes. Of course, that would all be far too simple!?! But, I've other talents that help compensate [I sure hope!].

Oh, Melody, COULD WE? It'd be fun and the feet wouldn't hurt!

Hugs and fuzzies to all! - j

dahlek 09-06-2006 09:24 AM

Between all the meds and vites...
 
I have to admit that after scrutinizing any part for over 2 minutes, I DO get cross-eyed, when I push it, I get brain-fried. Few humans have the 'gift', I am thinking. I've always admitted I do NOT. The 'easy out, one-pill' concept does appeal, but we all know reality intrudes. Of course, that would all be far too simple!?! But, I've other talents that help compensate [I sure hope!].

Oh, Melody, COULD WE? It'd be fun and the feet wouldn't hurt!

Hugs and fuzzies to all! - j

Of course, simple solutions are never simple in the real world.

Wittesea 09-06-2006 09:58 AM

About the "everything in one pill" idea....

I know that compounding pharmacies can make an "all in one pill" out of prescription medications - combining several medications into one pill so that it is easier for a patient to take all their needed meds in a single pill...

I wonder if compounding pharmacies can do the same for vitamins/supplements? or if there is a vitamin/supplement coupounding pharmacy/company somewhere?

jccgf 09-06-2006 11:59 AM

Quote:

Originally Posted by Wittesea (Post 3506)
About the "everything in one pill" idea....

I know that compounding pharmacies can make an "all in one pill" out of prescription medications - combining several medications into one pill so that it is easier for a patient to take all their needed meds in a single pill...

I wonder if compounding pharmacies can do the same for vitamins/supplements? or if there is a vitamin/supplement coupounding pharmacy/company somewhere?

I've wondered about this, too. I suspect they CAN do it.... but how much of a premium would it cost? And of course, the biggest part is figuring out how much of each thing is appropriate for our very individual needs... probably the toughest part of the equation.

Cara

jccgf 09-06-2006 06:03 PM

Well, I'm not sure if any one else cares, but I just found the bit about P5P, quite by accident...I had emailed it to myself some time ago and was clearing out my inbox...

Quote:

Safety, Toxicity, and Side Effects
The use of supplemental P5P has not been associated with toxicity, although the inactive form, pyridoxine, has been associated with reports of peripheral neuropathy.[45] One hypothesis is that pyridoxine toxicity is caused by exceeding the liver's ability to phosphorylate pyridoxine to P5P, yielding high serum levels of pyridoxine which may be directly neurotoxic or may compete with P5P for binding sites, resulting in a relative deficiency.[46]

Mpofu et al reported electrophysiological and neurological examination of 17 homocystinuric patients who had been treated with 200-500 mg pyridoxine HC1 daily for 10-24 years, and found no evidence of neuropathy.[47] Most reported cases of neuropathy associated with pyridoxine supplementation have involved intake of at least 500mg/day for two years or more.[48] While there is no doubt that vitamin B6 can be neurotoxic in gross excess, there is considerable controversy over the way in which toxicological data have been translated into advised limits.[8]
http://www.findarticles.com/p/articl..._6/ai_71948217

rose 09-11-2006 11:13 PM

100 is pretty conservative, but if you want to be extra certain, the P-5-P type is much better. Some people can't convert the cheap old pyridoxine to a usable form so it piles up on them.

Too much or too little B6 can interfere with nerves.

I haven't read the whole thread, so sorry if this is redundant.

rose

dahlek 09-12-2006 11:36 AM

Rose, the #'s added up, under my nose!
 
The b-6's seemed innocous at first. The combo added up to over 680mg per day. I really don't know how such a lapse occurred other than: a preoccupation w/getting good numbers of other stuff into me and a preoccupation with other medical issues...It was only a fluke that noticed the b-6 added to another supplement in a 80mg quantity [I'd not noticed before...] that got the grey cells working albiet not at optimum speed.
Since then, I've dropped the multi [had waay too much-580mg] and just taking the other essentials B-12, Calcium w/D & magnesium & Omega Oils...

I'm thinking IF I've asorbtion issues [something hard to prove/test] I'll have to go the Vite-By-vite add on as needed route. If I'm not mistaken that's what brought on the whole 'wish there was one simple pill' discussion. I certainly want to do this safely, as we all do, at the same time...I kick myself now [often] at overlooking this aspect I overlooked!

The only sources that look minimally safe rite now are -pre natal vites..that I can add on the specifics as needed. However they are pricey...I'm about to check out Kids vites next. Any Ideas?

Glad you are back, hope where you went was as beautiful as I imagine, and let's get on from here? Don't ever ask where 'here is', as we may find out!

Good thoughts ever and always! - j

slogo 09-12-2006 12:02 PM

anyone taking Shaklee Food supplements?
 
I have been taking Shaklee and wonder just how good they really are and the price makes me wonder too? any thoughts on the subject?
I tried the soy protein powder and I think it was making me sick. :confused:

rose 09-12-2006 02:05 PM

580 mg B6?
 
Unless it is prescription, I don't believe they can sell over 150 in one capsule or tablet in the United States.

Most multivitamins have A tiny amount of B6, and now one can get B complex containing 20 -50 mg and at least part of that P-5-P. I got my mother on Source Naturals Coenzymate B complex because she needed to keep the B6 extra conservative and the types of the vitamins are good ones.

rose

ConsiderThis 09-13-2006 03:29 PM

Quote:

Originally Posted by dahlek (Post 3469)
I've tried to be soo careful..and well, wham! I really did it to myself! I was taking almost 700 mg between the super-multi and a b-complex. Since I've stopped, I'm feeling better, with the gravelly/tingle stuff on the fingertips and a bit of extra somethings in my insteps.
I really can't think what was going on in my mind! I think I was so focussed on the B-1 & 12's that the rest of the brain went into outer space.
I have to ask tho, why didn't the Docs notice this? I list all this stuff on my meds sheet [updated whenever there's a change...& its lengthy]. There are notes in my records questioning asorbtion problems..maybe I just thought It wouldn't get taken into the system...
Besides you folks, is a nutritionist one to formulate the perfect combo? I'm beginning to feel scattershot in my approach. When I'd thot I was methodical.
Soo, I guess I've got to re-read all the vitamin stuff I've ever learned [& hopefully BT stuff] soon.
What an adventure! Thank you all! - j

Wow, that is really a lot.

I was posting on a forum where a fellow from Norway (or Denmark, I forget) was saying that B vitamins are dangerous. I kept disagreeing. But then I read the study he was referring to and saw that it was one I had mentioned on my site when it came out because it said that B vitamins weren't any help in lowering homocysteine levels.

So I read the study and low and behold they were giving huge huge amounts of B6 and just the smallest, most miniscule amount of B12. They had more folic acid in the doses, if I remember correctly, than they had B12... and Folic Acid disguises B12 deficiency.

That study got evening news coverage... and none of the coverage was accurate about what had actually been administered, and what the actual effects were for the specific vitamins that were administered.

It just made me so angry...

:mad:

Well, thanks for this chance to vent!!!!!!

Here's the link to my page talking about the study:
http://health-boundaries-bite.com/B1...t-Attacks.html


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