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Sallysblooms 03-11-2012 09:10 PM

Whoops, I left out Benfotiamine in my post.

mrsD 03-12-2012 05:50 AM

Quote:

Originally Posted by Idiopathic PN (Post 860156)
Is there a VIt D overdose? I am supposed to take a 1200mg of calcium a day. But since I am taking gabapentin 3x a day, I could not follow now the 3x a day dosage of calcium ( (less window of squeezing in between gabapentin without compromising absorption) . Instead I only take calcium 1x a day. To help in the absorption of the calcium I take vitd3
2000IU.

Thank you for time.

Some doctors are suggesting to cut back on calcium supplements to 600mg a day tops, when taking high dose Vit D.

http://www.trackyourplaque.com/blog/...vitamin-d.html

Idiopathic PN 03-18-2012 10:24 AM

Quote:

Originally Posted by mrsD (Post 653193)
Benfotiamine is a lipid soluble form of water soluble common Thiamine (B1).

Historically B1 was the only treatment for neuropathy for many years. The typical dose is 100-300mg daily in divided doses.
Then the SSRI antidepressants emerged and also Neurontin (followed by Lyrica) and the treatment for PNs changed and doctors dropped the thiamine. This I believe is a mistake.

Thiamine is easily found in most grocery stores and pharmacies. It remains inexpensive as well. Starting just over a decade ago, this new form called Benfotiamine started appearing in studies.
For quite a while it was not available in US and then when it did start becoming so, it was ferociously expensive. That has now changed.

Here is an informative website on it:
http://www.benfotiamine.org/FAQ.htm

I find it affordable at iherb.com and I use the Doctor's Best brand. The website above endorses much higher doses, than I use and typically recommend. I think for many people 300mg a day is adequate. But we have had some posters here who used 900mg-1200mg daily. At that level, cost will become an issue for many.

I recommend benfotiamine for neuropathies that are not responding to B12 and/or Vit D. Also some people have metabolic problems with the genes that metabolize alcohol. These patients also can benefit from benfotiamine.

I'll also add that beriberi (thiamine deficiency) does occur in some patients and go unrecognized by doctors. This is due to taking some medications that deplete thiamine, like the strong loop diuretics. But it can be due to low dietary intake, high alcohol consumption, or a genetic flaw that then requires higher daily intake. Malabsorption from gluten intolerance/Celiac or inflammatory changes in the GI tract like Crohn's may also cause beriberi. The genetic issue is called vitamin "dependency" and occurs with other vitamins ---B6 for example. People with a vitamin dependency require higher amounts of the vitamin compared to the majority of others.
Here is a link to a medical site on beriberi:
http://emedicine.medscape.com/article/116930-overview

Since the link I gave at the beginning of this post, is very complete, there is not much more for me to say at this point, other than benfotiamine remains a good option to add to any supplement list you may be considering.

edit to add some more links from PubMed on this subject:

http://www.ncbi.nlm.nih.gov/pubmed/20188835

This study does give doses:
http://www.ncbi.nlm.nih.gov/pubmed/18473286
And does reiterate what I post that it takes TIME to show benefits. People often push the dose UP to get faster response IMO.

This is a chemical explanation:
http://www.ncbi.nlm.nih.gov/pubmed/18384109

http://www.ncbi.nlm.nih.gov/pubmed/18220605
Before gabapentin and SSRIs drugs, thiamine was the main treatment for PN. I believe it should remain high in the list for
any PNer and befotiamine is superior IMO. However, benfotiamine at one time was super expensive and few could afford it. That has changed in the last 3 yrs or so.
Thiamine remains inexpensive, but it makes some people have a body odor that limits its use.

This PDF gives some good data:
http://www.altmedrev.com/publications/11/3/238.pdf

This is an older paper:
http://www.ncbi.nlm.nih.gov/pubmed/16359659

This is from 1999:
http://www.ncbi.nlm.nih.gov/pubmed/10219465

I used to use thiamine in bursts. A month or two at a time, in the past. When Benfotiamine became affordable, I changed to it.
I only use 150mg a day now, but I started at 300mg in the beginning. I don't feel it is a cure...but it sure does prevent progression, and take care of alot of the discomfort for me.
I do think some people have a higher genetic requirement for it.

This one from 1996: Germany where the beginning studies originate.
http://www.ncbi.nlm.nih.gov/pubmed/8886748

Edit:
Here is a new link... discussing the better absorption and bioavailability of Benfotiamine vs thiamine:



http://www.ncbi.nlm.nih.gov/pubmed/8929745

Dear Mrs.D,
I would like to try Benfotiamine, when I went to search Benfotiamine, I think I saw Benfotiamine with Carnisine and Benfotiamine with Thiamin (or even Benfotiamine with V - whatever that was). Which one are you recommending?

For a start, I'd like to take the 150mg. If I am right, you started from 300mg then reduced it to 150mg. I am sensitive to most medicines/supplements so I will try first the 150mg. Do think that is enough?

Thank you.

mrsD 03-18-2012 10:48 AM

I'd get the Doctor's Best Benfotiamine 150mg.

If you are worried about high doses, just do 150mg a day.

If you get no negative reactions, you can increase to 300 for a couple of months and see if that helps.

I'd stay away from mixtures of things. You cannot control mixtures or see what is really doing what.

I say this about "reactions". I had great hopes for NAG-- n-acetyl glucosamine, but it seems to inflame my nerves worse.
I never expected that, since I have used glucosamine in the past (with not much results). I've tried 3 times, and got inflamed nerves all 3 times!

Idiopathic PN 03-18-2012 12:07 PM

Quote:

Originally Posted by mrsD (Post 861953)
I'd get the Doctor's Best Benfotiamine 150mg.

If you are worried about high doses, just do 150mg a day.

If you get no negative reactions, you can increase to 300 for a couple of months and see if that helps.

I'd stay away from mixtures of things. You cannot control mixtures or see what is really doing what.

I say this about "reactions". I had great hopes for NAG-- n-acetyl glucosamine, but it seems to inflame my nerves worse.
I never expected that, since I have used glucosamine in the past (with not much results). I've tried 3 times, and got inflamed nerves all 3 times!

Mrs. D,

Please tell me if my supplements now are fine. Please take note that my prescribed medications are Synthroid, Gabapentin and 3 eye solutions for my dry eyes (i have no Sjogren's Syndrome) ---

1. Methyl B12 - empty stomach
2. Multivitamin
3. Vit C - 500mg 2x a day
4. Vit E - 400mg 1x a day
5. Selenium - 200 mg 1x a day
6. Omega 3,6,9 - 800mg 2x a day
7. Glucosamine (stopped starting today)
8. Calcium with VitD - 600mg and 400mg, respectively 1x a day
9. Vit D3 - 2000mg 1x a day (taken together w/ Calcium - taken 5hours after Synthroid)
9. CoQ10 100mg - 1x a day (taken at night together with the 2nd VitC and Omega)

To add:
1. Benfotiamine 150mg - 1x day - Mrs. D, can I take this together with VitB12, or can this be taken with the other supplements? Does this affect absorption of other drugs?

Plan to add after thyroid stabilizes:
1. R-Lipoic
2. Acetyl L-Carnitine (I am not s ure if this is the right one)

Please feel free to recommend what you think is best.

Thank you very very much.

mrsD 03-18-2012 12:12 PM

Looks good to me. I think Benfotiamine has better absorption than thiamine:

http://neurotalk.psychcentral.com/post850997-117.html

I think you can take it with your other supplements that don't need empty stomach.

mrsD 03-19-2012 06:27 AM

@IdopathicPN

You want to make sure your kidneys are working normally with all those supplements.

And check your multivitamin to see if it has selenium in it.
If so 200mcg daily extra is a bit much... you could take it every other day instead. The new suggestions on selenium today are more conservative than they were 5 yrs ago. 100mcg daily is
now the suggestion upper limit.

Idiopathic PN 03-19-2012 09:29 AM

Quote:

Originally Posted by mrsD (Post 862149)
@IdopathicPN

You want to make sure your kidneys are working normally with all those supplements.

And check your multivitamin to see if it has selenium in it.
If so 200mcg daily extra is a bit much... you could take it every other day instead. The new suggestions on selenium today are more conservative than they were 5 yrs ago. 100mcg daily is
now the suggestion upper limit.

Oh, thank you so much Mrs. D for this "warning". My multivitamin has Selenium (as Sodium Selenate) 55mcg and says that its 79% of daily allowance. Now, I think I will stop Selenium. The only reason why I started on it recently - it says it protects the liver. I am concerned that with all the medications and supplements I am taking, I would want to protect my liver.

mrsD 03-19-2012 09:40 AM

Selenium also is a cofactor in conversion of T4 to active T3.

So some IS needed. I would keep it at 100mcg a day by using the 200mcg only occasionally. As I figure it 325mcg a week (7 day period) would bring you up the the RDA.

So taking 1 of those 200mcg selenium a week would do it pretty closely.

ger715 03-19-2012 11:22 AM

Mrs. D
 
Quote:

Originally Posted by mrsD (Post 862202)
Selenium also is a cofactor in conversion of T4 to active T3.

So some IS needed. I would keep it at 100mcg a day by using the 200mcg only occasionally. As I figure it 325mcg a week (7 day period) would bring you up the the RDA.

So taking 1 of those 200mcg selenium a week would do it pretty closely.


I am a little confused about the selenium. My daily multivitamin does not contain the selenium. I do take daily:
100mg. R-Lipoic (empty stomach)
2mg. MethylCobalamin (empty stomach)
150mg (2x's a day = 300mg's daily)
3,000mg's D daily (per doctor/tests)
Multivitamin (no selenium)

A while back ago, I purchased from iherb:

Best Ubiquinol (Kaneka QH) 100 mg softgels

Bluebonnet Chelated Magnesium 200mg+
(buffered magnesium glycinate chelate) VCap)


I have not taken any of the above because I was unsure if I should take them or not.

I am on Oxycontin, as well as Percocet for breakthru for PN pain.

Should I add the selenium to my daily diet? Also should use the Ubiquiol and the Magnesium?
Thanks for your help,
(Ger)

mrsD 03-19-2012 11:32 AM

If you don't eat nuts, or fresh produce, whole foods, you might need the selenium. It is mostly critical for thyroid people.

It is one of the cofactors in converting T4 to T3 in the tissues.

Most multivits have some selenium in them. The mega types, can go as high as 200mcg each. But in the recent past has been
suggestions to keep multivits below 100mcg.

You could just use a Centrum Silver, as it has lots of minerals for seniors including selenium.
http://www.drugstore.com/centrum-sil...omsrch=centrum
Less than Idiopathic's formula, in fact.

mrsD 03-20-2012 06:18 AM

Taurine and Diabetes:
 
Taurine is one supplement recommended by some doctors for diabetics. Dr. Jensen, MD, recommends this in her book.
http://obesitysanswer.com/

Taurine has a value for older patients who can no longer make it for themselves:

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

This monograph is very good:
http://www.webmd.com/vitamins-supple...ntName=TAURINE

I really think for our purposes here, 1 to 2 grams a day is probably enough.

Taurine is inexpensive and has no side effects to speak of.
It is something to think about here, if you are older, have glucose control problems, or are very overweight. Taurine is very helpful for sluggish gall bladder issues, and I've used it myself for that. I also supplement my cats, when they have
human food/or tuna because cats cannot make their own taurine.

There is a product called magnesium taurate...by Cardiovascular Research. It supplies both magnesium and taurine, and is used by
cardiac patients, and some Tourette's patients.

http://www.magnesiumtaurate.net/
It used to be more expensive, and difficult to find. But both of those issues have changed. It is one option some readers here might
consider.

Idiopathic PN 03-20-2012 10:13 AM

Quote:

Originally Posted by mrsD (Post 862202)
Selenium also is a cofactor in conversion of T4 to active T3.

So some IS needed. I would keep it at 100mcg a day by using the 200mcg only occasionally. As I figure it 325mcg a week (7 day period) would bring you up the the RDA.

So taking 1 of those 200mcg selenium a week would do it pretty closely.

Mrs. D, thank you.

I am really so grateful for your advices and concern.
I am so happy I found this forum.

ger715 03-20-2012 08:30 PM

Mrs. D,
 
Quote:

Originally Posted by mrsD (Post 862233)
If you don't eat nuts, or fresh produce, whole foods, you might need the selenium. It is mostly critical for thyroid people.

It is one of the cofactors in converting T4 to T3 in the tissues.

Most multivits have some selenium in them. The mega types, can go as high as 200mcg each. But in the recent past has been
suggestions to keep multivits below 100mcg.

You could just use a Centrum Silver, as it has lots of minerals for seniors including selenium.
http://www.drugstore.com/centrum-sil...omsrch=centrum
Less than Idiopathic's formula, in fact.

I had also mentioned, in my post, purchasing the Chelated Magnesium 200mg+ and the Doctor's Best Ubiquinol100mg featuring Kaneka QH. I had purchased them thinking this would be good for the PN, but was a bit concerned because of all the other supplements I am already taking, so I have not been using them. Again, would appreciate any input you could give me regarding using these supplements as well.
Thanks,
(Ger)

mrsD 03-21-2012 03:29 AM

Magnesium is always appreciated by our bodies. 200mg a day is about 1/2 the RDA and a good dose to start at. If the magnesium loosens you that shows some is not being absorbed.

The ubiquinol is also easily tolerated. You don't need high doses of this like with regular CoQ-10. So as far as side effects go you should not have any at 100mg a day.
If after a month or two you don't see any response from the ubiquinol, you can probably stop it. People taking statins or other drugs that deplete it need to supplement it.
(diuretics, antipsychotic tranquilizers, long term amitriptyline/nortriptyline, beta blockers, some of the oral antidiabetics)

Both will work together to help your mitochondria and also
the metabolism of essential fatty acids from your diet.

ger715 03-21-2012 10:45 AM

Mrs. D,
 
Quote:

Originally Posted by mrsD (Post 862750)
Magnesium is always appreciated by our bodies. 200mg a day is about 1/2 the RDA and a good dose to start at. If the magnesium loosens you that shows some is not being absorbed.

The ubiquinol is also easily tolerated. You don't need high doses of this like with regular CoQ-10. So as far as side effects go you should not have any at 100mg a day.
If after a month or two you don't see any response from the ubiquinol, you can probably stop it. People taking statins or other drugs that deplete it need to supplement it.
(diuretics, antipsychotic tranquilizers, long term amitriptyline/nortriptyline, beta blockers, some of the oral antidiabetics)

Both will work together to help your mitochondria and also
the metabolism of essential fatty acids from your diet.


I really do appreciate your patience. Some questions come to mind...... You mention, if Magnesium loosens, show you that some is not being absorbed. Does this mean a hgher dose is required? Also, because of the high dose of narcotics; take daily laxatives.

Regarding Ubiquinol...I am taking some of the drugs you mention (duretics, amitriptyline, statins); does this mean all the more reson to take the Ubiquinol?

Do either of these two help in the improvment of PN??
Again, thank you.

(Ger)

Nervous 03-21-2012 11:02 AM

Quote:

Originally Posted by mrsD (Post 862750)
Magnesium is always appreciated by our bodies. 200mg a day is about 1/2 the RDA and a good dose to start at. If the magnesium loosens you that shows some is not being absorbed.

The ubiquinol is also easily tolerated. You don't need high doses of this like with regular CoQ-10. So as far as side effects go you should not have any at 100mg a day.
If after a month or two you don't see any response from the ubiquinol, you can probably stop it. People taking statins or other drugs that deplete it need to supplement it.
(diuretics, antipsychotic tranquilizers, long term amitriptyline/nortriptyline, beta blockers, some of the oral antidiabetics)

Both will work together to help your mitochondria and also
the metabolism of essential fatty acids from your diet.


I'm not sure when to apply this rule. For example, I do not see any response to Vitamin C, yet I know tat the body requires it. So, I'm a bit puzzled.

mrsD 03-21-2012 11:07 AM

Low Vit C and you may have more bleeding gums, mouth irritation, more frequent colds, bruising more easily. Aches and pains, arthritis joint issues.

But many nutrients are silent until you get low and symptoms
begin.

Magnesium= better sleep, less tension, less twitching,
better sugar metabolism/control, etc. You cannot feel your bones strengthen, until you don't and break one. A lot of mental improvements. We cannot however, feel repairs being done
on the cellular level, until many cells are broken.

Nervous 03-21-2012 11:12 AM

Quote:

Originally Posted by mrsD (Post 862831)
Low Vit C and you may have more bleeding gums, mouth irritation, more frequent colds, bruising more easily. Aches and pains, arthritis joint issues.

But many nutrients are silent until you get low and symptoms
begin.

Magnesium= better sleep, less tension, less twitching,
better sugar metabolism/control, etc. You cannot feel your bones strengthen, until you don't and break one. A lot of mental improvements. We cannot however, feel repairs being done
on the cellular level, until many cells are broken.


Okay. But in the case of CoQ10/ubiquinol, we are nourishing the immune system, no? So, how do we gauge a response on that? Is it like "I got only one head cold this winter, so my CoQ10 must be helping my immune system"?

mrsD 03-21-2012 12:18 PM

Quote:

Originally Posted by ger715 (Post 862823)
I really do appreciate your patience. Some questions come to mind...... You mention, if Magnesium loosens, show you that some is not being absorbed. Does this mean a hgher dose is required? Also, because of the high dose of narcotics; take daily laxatives.

Regarding Ubiquinol...I am taking some of the drugs you mention (duretics, amitriptyline, statins); does this mean all the more reson to take the Ubiquinol?

Do either of these two help in the improvment of PN??
Again, thank you.

(Ger)

When magnesium is not absorbed from the GI tract it moves on to the large bowel, and is a laxative. It is a sign you are taking too much rather than too little. Or the type (if Oxide for example) is being used. All of the magnesium orals are only partly absorbed. Not near 100% at all. In fact calicum (when not used with Vit D is only absorbed about 20% per dose. People don't know that.

Our bodies make CoQ-10.... so unless something is happening to upset that chemistry, it is not considered an essential nutrient. Magnesium is essential, Vit C essential, and many of the B's essential including B12.

We make carnitine, taurine, CoQ-10, normally, so when these supplements fail to show improvements of any kind, after a few months, it is probably safe to stop using them.

There is no general rule... but after you read about them for a while you get the impression of which are critical and which are less so. It is a learning process.

CoQ-10 does many things...mostly to help muscle energy requirements, but it works in the mitochondria for any energy purpose. In general when I feel "better" in any way on something, I keep it. We are lucky that most of the PN supplements are rather benign and won't hurt to use for a short time. They tend to be expensive overall, but not hurtful. Other disease states do not have this luxury, that we have here.

mrsD 03-21-2012 12:24 PM

And yes, anyone depleting CoQ-10 would do wisely to take some.
Watch for any improvements to gauge if it is helping. The most likely obvious thing with CoQ-10 is less fatigue and more stamina as it helps with the heart and muscle energy requirements.
Some people with Parkinson's use very high dose CoQ-10 to help with tremors because those cells may have damaged mitochondria in the brain. Each person will have different responses depending on their own weakness/error in chemstry.

This is why I don't like big combo mixture products for PN.
When several are mixed together in one pill...you cannot tailor your doses to what YOU need. Because all of us are different in what we need.

Idiopathic PN 03-28-2012 02:30 PM

Dear Mrs. D,
I will start the Benfotiamine today.
I will also order online the R-Lipoic and Acetyl L-Carnitine this week.

Assuming I have a reactive hypoglycemia, are these supplements safe to take?

Can the Acetyl L-Carnitine be taken together with my other supplements?

You mentioned in one of your posts in this thread that our body makes CoQ10and if no improvement is "felt" after so many months, it is safe to discontinue. But if one would want to continue using it, is it safe to use for a longer period of time just like Vit E and C?

What about Benfotiamine, R-Lipoic and Acetyl L-Carnitine, can they also be taken for a long period of time?

Thank you so much Mrs. D! :)

mrsD 03-28-2012 02:51 PM

As far as your R-lipoic goes.... you should be able to take 100mg a day. If you have side effects, you can do it every other day.
But if you just make sure you have a snack in the morning and one before dinner, and one before bedtime, say a small snack.
Some cheese, 1/2 of a protein bar (there are new ones available from Nature Valley now in most stores), or some other protein thing, like Kefir or yogurt, you won't get low. Watch your sugar intake and you'll be less likely to get low. The new Chobani yogurt is quite high in protein for example. You got low on the glucose drink and regular food is much different.

Benfotiamine is safe by all accounts in the studies. I wouldn't worry about it. Same with the acetyl Carnitine. The biggest issue for most, is the cost. You should feel more energy on them all, and have more stamina. I have seen carnitine papers for both hypo and hyper thyroid states so I wouldn't worry about it either.
500mg a day is a good start for the carnitine.

Idiopathic PN 03-28-2012 04:20 PM

Quote:

Originally Posted by mrsD (Post 864731)
As far as your R-lipoic goes.... you should be able to take 100mg a day. If you have side effects, you can do it every other day.
But if you just make sure you have a snack in the morning and one before dinner, and one before bedtime, say a small snack.
Some cheese, 1/2 of a protein bar (there are new ones available from Nature Valley now in most stores), or some other protein thing, like Kefir or yogurt, you won't get low. Watch your sugar intake and you'll be less likely to get low. The new Chobani yogurt is quite high in protein for example. You got low on the glucose drink and regular food is much different.

Benfotiamine is safe by all accounts in the studies. I wouldn't worry about it. Same with the acetyl Carnitine. The biggest issue for most, is the cost. You should feel more energy on them all, and have more stamina. I have seen carnitine papers for both hypo and hyper thyroid states so I wouldn't worry about it either.
500mg a day is a good start for the carnitine.

Mrs. D, what possible side effect/s is expected from R-lipoic?

Do you recommend Doctor's Best for the R-Lipoic?
Its only Jarrow which has 500mg for Acetyl L-Carnitine, should I get this?

Thank you. You are an angel! :hug:

mrsD 03-28-2012 04:30 PM

Side effects from R-lipoic may be irritability or anxiety. Not all of our posters here get this. But I did and a few others.

Take the R-lipoic on an empty stomach for best absorption.

You may not see anything at all.

Acetyl Carnitine comes in 250mg also...from Puritan's pride.
The carnitine allows your body to metabolize fatty acids instead of glucose when glucose is low. So it might really give you a boost.

But Carnitine really only has GI symptoms in excess of 10 grams a day! We don't use anything near that dose at all!
It is really easy to tolerate. It just costs alot of money, like the CoQ-10 does.

I just bought Qunol (ubiquinol) at Costco this week, on a big sale. I've just finished 300mg CoQ-10 I found in my packing box for upNorth! I bought this last summer at SAMs club. I am just starting to see some effects (less need for naps for example) after 60 caps! one a day.

I'll do the Qunol and see if there is any change. I think CoQ-10 is a slow slow response depending on the quality of the product you choose.

Supplements that affect metabolism, work very slowly... you have to be observant to really feel them sometimes.

Archer 03-28-2012 04:38 PM

Methyl Supplements TMG and DMG, other protocols to reverse my foot neuropathy
 
I have recently joined this forum, thanks so much for your info Mrs. D. I have been researching supplements that help in methyl conversion that may assist in regeneration of nerves damaged by idiopathic polyneuropathy in my feet. Especially interested in your opinion of TMG, DMG and a supplement called Phosphatidylserine. Also have found warming my feet while taking a sublingual B-12 5mg seems to help speed the nerve recovery, which is still very slow, but is progerssing. Would heating pads and tens units help my feet with more circulation of these supplements? How about L Arginine Gel? Should I be walking for an hour a day like I used to before this affliction hit me, or would the walking make it worse. I am using all the supplements to rebuild mitochondria, (CO Q10. Benfotiamine, Biotin, ALA, Acetyl-L-Carnitine, Magnesium. Any suggestions you could provide to speed up my foot polyneuropathy reversal would really be appreciated. BTW, my neurologist said my condition was irreversible, and likely progress to more pain as I age. I'm 60 years old. I am taking 600 mg of gabapentin per day, down from the 1500 mg I was taking several months ago. Thanks much for all your help.

mrsD 03-28-2012 04:52 PM

Welcome to NeuroTalk:

If you use heat TOO much...you may make the nerves hurt more.
Some is good... too much is not good.

Have you had testing for MGUS or other Ig proteins? This may make your circulation slower.

Do you smoke? This can reduce circulation to the legs and feet.

You could try the arginine gel. It may help. But I would encourage you to find some more answers eventually.

Idiopathic PN 03-28-2012 05:00 PM

Quote:

Originally Posted by mrsD (Post 864765)
Side effects from R-lipoic may be irritability or anxiety. Not all of our posters here get this. But I did and a few others.

Take the R-lipoic on an empty stomach for best absorption.

You may not see anything at all.

Acetyl Carnitine comes in 250mg also...from Puritan's pride.
The carnitine allows your body to metabolize fatty acids instead of glucose when glucose is low. So it might really give you a boost.

But Carnitine really only has GI symptoms in excess of 10 grams a day! We don't use anything near that dose at all!
It is really easy to tolerate. It just costs alot of money, like the CoQ-10 does.

I just bought Qunol (ubiquinol) at Costco this week, on a big sale. I've just finished 300mg CoQ-10 I found in my packing box for upNorth! I bought this last summer at SAMs club. I am just starting to see some effects (less need for naps for example) after 60 caps! one a day.

I'll do the Qunol and see if there is any change. I think CoQ-10 is a slow slow response depending on the quality of the product you choose.

Supplements that affect metabolism, work very slowly... you have to be observant to really feel them sometimes.

You suggest that I take 250mg instead of 500mg for the Acetyl L Carnitine?

Archer 03-28-2012 05:09 PM

Reply to Mrs D's questions
 
Thanks much Mrs D. I do not smoke, I have been tested for protein via electrophoresis, all is well there. No test for Ig protein that I can see on my labs.

Would walking help my foot neuropathy?
Thanks much.

mrsD 03-28-2012 05:10 PM

You could.... start at 250mg twice a day.

This is because acetyl carnitine is not absorbed well, so divided doses give you MORE.

It is a fine point, but if you do well on less, then that is something you need to know.

glenntaj 03-29-2012 05:45 AM

Archer--
 
--a serum and urine electrophoresis is the immunoglobulin test; it should also be done with an enumeration of IgA, IgG, and IgM and a test for cryoglobulins.

mrsD 03-29-2012 06:59 AM

@ Archer.... have you tried soaking your feet in epsom salts --with warm (not hot) water?

This can open up the circulation faster than oral supplements for some people. When the circulation is poor, blood is not getting to the feet, and whatever supplement you are using is just not
getting in. Once you "get ahead" of the problem, it will become easier. You may be able to drop the soaks, as the magnesium does it job orally more efficiently.

I found an interesting PDF the other day on epsom salts, --more details on how to do them:
http://neurotalk.psychcentral.com/post864114-32.html

Idiopathic PN 03-30-2012 07:50 AM

Quote:

Originally Posted by mrsD (Post 864731)
As far as your R-lipoic goes.... you should be able to take 100mg a day. If you have side effects, you can do it every other day.
But if you just make sure you have a snack in the morning and one before dinner, and one before bedtime, say a small snack.
Some cheese, 1/2 of a protein bar (there are new ones available from Nature Valley now in most stores), or some other protein thing, like Kefir or yogurt, you won't get low. Watch your sugar intake and you'll be less likely to get low. The new Chobani yogurt is quite high in protein for example. You got low on the glucose drink and regular food is much different.

Benfotiamine is safe by all accounts in the studies. I wouldn't worry about it. Same with the acetyl Carnitine. The biggest issue for most, is the cost. You should feel more energy on them all, and have more stamina. I have seen carnitine papers for both hypo and hyper thyroid states so I wouldn't worry about it either.
500mg a day is a good start for the carnitine.

Dear Mrs. D,
I am sorry if my question may not be related to neuropathy. But I dont know where else to pose this question.

As you may know I dont have my thyroid gland anymore. I was told that if one has had a total thyroidectomy, the dosage of the Synthroid should be at least at the minimum of .100mcg. However, in my case, when I have .100mcg, my TSH would be so low. In fact, my doctor has been trying to find the right dosage for me. Currently I am on .75mcg for 6 days and .35mcg. for 1 day. My test for thyroid antibodies is normal. I am wondering why my body requires only a low dosage of thyroid hormone when I dont have my gland. Could there be any other issue/s that my doctor might have missed that may have effect on my neuropathy?

Thank you so much for your patience.

mrsD 03-30-2012 08:27 AM

There can be thyroid tissue in other parts of the body.

http://www.ncbi.nlm.nih.gov/pubmed/15744160

and this:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3197173/

This tissue could be active and responding to pituitary signals.

Idiopathic PN 03-31-2012 05:39 AM

Supplements stressing kidney and liver?
 
I believe that our nerves need as much help as possible from the supplements. I am taking a lot of supplements, based on the lists I found on this thread. But, I am concerned about the effects of these supplements to our kidney and liver.

What is your advise to protect our liver and kidney? Has there been any one who posted about stressing kidney or liver?

Thank you very much.

mrsD 03-31-2012 08:15 AM

Quote:

Originally Posted by Idiopathic PN (Post 865392)
I believe that our nerves need as much help as possible from the supplements. I am taking a lot of supplements, based on the lists I found on this thread. But, I am concerned about the effects of these supplements to our kidney and liver.

What is your advise to protect our liver and kidney? Has there been any one who posted about stressing kidney or liver?

Thank you very much.

The only supplement I believe you need to watch is magnesium.
Magnesium does NOT cause kidney problems but if you have those already, the elimination will be slowed for magnesium.

CoQ-10 has been suggested for kidney failure in fact.

Lipoic acid has been shown to be not a factor for people with reduced kidney functions:
http://www.ncbi.nlm.nih.gov/pubmed/15703366
Appears to be tolerated well.

Carnitine has been suggested for people with low kidney functions because the kidney is where this is made for the body in fact. So carnitine may be low in patients with kidney damage.

The water soluble vitamins, B's and C predominately, are excreted by the kidney but I have not seen any papers showing they cause kidney disease.

Supplements basically do not hold toxicity for the liver, because they are used as such by the body for all the various tasks needed. They are not drugs.

Some minerals in high dose, like chromium, etc may become toxic when misused. Here is a general article about toxicity:
http://medical-dictionary.thefreedic...neral+Toxicity

At the levels we use here on this forum, effects on liver and kidney are basically not a serious issue. Only for those who already have severe kidney damage, do clearance rates become important to attend to.

However, some drugs used to treat PN may be toxic....
Cymbalta for one can damage the liver severely..and there have been deaths from this. This drug is too new to appear on
this list. But Cymbalta now has a warning about liver damage:
http://www.rxlist.com/cymbalta-drug.htm


Alcohol may affect the liver. This is very common.
Here is a listing of drugs that can damage the liver:
http://www.hepcnet.net/drugsandliverdamage.html
Notice Tylenol (acetaminophen) and aspirin are listed.

Vit A (retinol) and in high doses only that has potential.
Also high dose nicotinic acid (Niacin)--which is used for lipid control as a drug.

Anyone who takes lots of supplements should be evaluated at least yearly in a check up with blood chemistries, just to be sure both the liver and kidneys are working properly. This is a good idea for everyone, to have a good chemistry screening with the annual check up regardless of supplement use.

Idiopathic PN 03-31-2012 02:13 PM

Quote:

Originally Posted by mrsD (Post 865404)
The only supplement I believe you need to watch is magnesium.
Magnesium does NOT cause kidney problems but if you have those already, the elimination will be slowed for magnesium.

CoQ-10 has been suggested for kidney failure in fact.

Lipoic acid has been shown to be not a factor for people with reduced kidney functions:
http://www.ncbi.nlm.nih.gov/pubmed/15703366
Appears to be tolerated well.

Carnitine has been suggested for people with low kidney functions because the kidney is where this is made for the body in fact. So carnitine may be low in patients with kidney damage.

The water soluble vitamins, B's and C predominately, are excreted by the kidney but I have not seen any papers showing they cause kidney disease.

Supplements basically do not hold toxicity for the liver, because they are used as such by the body for all the various tasks needed. They are not drugs.

Some minerals in high dose, like chromium, etc may become toxic when misused. Here is a general article about toxicity:
http://medical-dictionary.thefreedic...neral+Toxicity

At the levels we use here on this forum, effects on liver and kidney are basically not a serious issue. Only for those who already have severe kidney damage, do clearance rates become important to attend to.

However, some drugs used to treat PN may be toxic....
Cymbalta for one can damage the liver severely..and there have been deaths from this. This drug is too new to appear on
this list. But Cymbalta now has a warning about liver damage:
http://www.rxlist.com/cymbalta-drug.htm


Alcohol may affect the liver. This is very common.
Here is a listing of drugs that can damage the liver:
http://www.hepcnet.net/drugsandliverdamage.html
Notice Tylenol (acetaminophen) and aspirin are listed.

Vit A (retinol) and in high doses only that has potential.
Also high dose nicotinic acid (Niacin)--which is used for lipid control as a drug.

Anyone who takes lots of supplements should be evaluated at least yearly in a check up with blood chemistries, just to be sure both the liver and kidneys are working properly. This is a good idea for everyone, to have a good chemistry screening with the annual check up regardless of supplement use.

As always, thank you very much for your comprehensive reply. I could not thank you enough for all your valuable feedback. I am grateful.

When you said in one of your posts to check on my kidney - well, I did - and I was told that it was normal. I forgot to have my liver function test. But I had it last May 2011 and was normal. Thank God!

mrsD 03-31-2012 02:15 PM

Quote:

Originally Posted by Idiopathic PN (Post 865476)
As always, thank you very much for your comprehensive reply. I could not thank you enough for all your valuable feedback. I am grateful.

When you said in one of your posts to check on my kidney - well, I did - and I was told that it was normal. I forgot to have my liver function test. But I had it last May 2011 and was normal. Thank God!

So you are all set to go! ;)

Idiopathic PN 03-31-2012 02:47 PM

Quote:

Originally Posted by mrsD (Post 865479)
So you are all set to go! ;)

Yes, Mrs. D. In fact, I am taking now all (or should I say) most of your recommended supplements.

I have always been taking Vit E, C, Calcium, Omega 3,6,9 and Multivitamin.

I started last February the VitB12 (methyl) after reading your supplements thread. Then, I started taking the Co-Q10. Last week, I started on Benfotiamine. I could not start the R-Lipoic earlier than I would have wanted because of my thyroid function. But yesterday, I ordered online the R-Lipoic and and Acetyl L-Carnitine.

I am also soaking my feet in warm water with magnesium at night.

I stopped the Selenium and Glucosamine.

Btw Mrs.D, my wounds from the skin biopsy are healing well. I did not take antibiotic. I just clean the surrounding areas with alcohol.
As of last week, my TSH is still high. So, my Synthroid has been adjusted to .75mcg for 6 days and .35mcg on Sunday. Oh well, I am reporting to you my update. I feel confident knowing you and this community are around to help us in going through this journey of making life more tolerable and feeling hopeful.

Are you sure you are not a doctor?!? :wink:

Nervous 03-31-2012 03:32 PM

^^mrsD is better than a doctor. Who ever gets a straight answer from a doctor? :winky:


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