Neuropathy Support Formula Effective?
 

Hello, my father (78) was receiving Chemotherapy injections for the treatment of his prostate cancer. Over the last 2.5 months he motor skills have plummeted. The neurologist believes it is CIPN. It is so scary, he has gone from fully functioning to completely unable to walk in such a short time. I am desperate right now because he is suddenly unable to live on his own. I have found a B-1, B-12 & Alpha-lipoic Acid supplement named "Neuropathy Support Formula" with references to dramatic improvements in the PN. Has anyone had any successes with this or tried this with no improvement? Any insight would be greatly appreciated!

I am having a problem accessing the ingredients' details on the web.

Can you put the amounts listed on your bottle up here, including the type of B12 (is it methyl version?).

The studies on chemo induced neuropathy, used acetyl carnitine to help prevent the damage during the chemo and after:

This thread on PN explains the supplements, their dosages and when to take them, including the carnitine.

He should get testing for B12 and Vit D (often very low in seniors) as well.
http://neurotalk.psychcentral.com/thread121683.html

Hi Mrs. D -
The nutritional info is for 2 capsules:
Vitamin B1 (Benfotiamine) 300mg
Vitamin B2 (Riboflavin) 4mg
Vitamin B6 (Pyridoxine HCl) 4mg
Vitamin B12 (Methylcobatamin) 2000mcg
Alpha Lipoic Acid 300mg
Vitamin D (Cholecalciferol) 500IU
Directions state to take 2 capsules twice daily.

My Dad did have his B12 tested but the doctor said it was well within normal range...not certain what it was though. I ordered the vitamins last night and will start him on them as soon as i receive - the way i see it, it can't get much worse. I may also try giving him the Acetyl L Carnitine supplement as well.

This one is quite new. And surprisingly is very strong. Typically I don't like mixtures, because they often have a ratio that is not really useful.

I would expect this to be very expensive. Was it? If not, then I would wonder if it contains what it says it does! You can send me a PM and tell me if you don't want to post here. I am guessing about $60/month?

It also should be taken on an empty stomach, because of the B12 content. Do the directions say that? If not, that omission is important. So follow the empty stomach recommendation I give for best absorption of the B12.

The D is low, but in a mixture, I wouldn't expect it to be higher.
He may need much more than these provide. But you will have to have testing to show that.

Yes, you are very close - it was $63 for a one month supply but like i said i am willing to try anything at this point and if it works, will be much less than the home care that i would need to get for him. As an aside, the price can go as low as $43 but you need to commit to a long term supply...
And yes, it does say that it should be taken on an empty stomach once in the am and once in the pm. You stated that you don't think the "ratio" supplements are useful - it that because they don't contain enough of a certain vitamin? Also, do you think it would be helpful to supplement with the Acetyl L Carnitine? Like I said, I am totally new to all of this and it is absolutely killing me to see my Dad in this condition. I suppose we are lucky that he does not have any pain like many of the posters on this board - his is purely extreme numbness and no balance which has left him pretty much immobile.
Thank you so much for all of your feedback, it is very much appreciated! :)

This is the first mixed product with doses that appear useful.

Usually the mixed things are high in one thing and low in others, or vice versa.

Yes, most definitely do the acetyl carnitine. Start at 250mg a day for week, if that goes well, with no side effects, increase by 250mg daily for a week until at least 1000mg a day in divided doses.

Carnitine improves mitochondrial functions which can be damaged by chemo.

The elderly should be taking B12 daily anyway... not just for PN.

Some people complain of stomach upset from alpha lipoic acid.
This may become a problem, because taking with food helps. And with that B12 in there, you can't take with food. This is the downside to mixed products. If you take them separately you would pay a similar price but could taylor some dosing if needed.

But not everyone has stomach upset with the alpha lipoic. You'll just have to wait and see. Don't tell him, or the placebo thing will kick in and he may over respond, etc. If you have to take with food, you might have to buy extra methyl B12 and take separately.

mrs D - thank you SO MUCH for your input and recommendations. I will definately take your advice and keep you posted on progress!!

How about some follow-up?
 

Did the Neuropathy Support Formula help? I am looking at it for my MMN (anything that will help motor nerves regenerate!) but the neuropathytreatmentgroup.com web site makes it look like snake oil. I am encouraged that Mrs. D liked the combination of ingredients. Mrs. D, you might find the clinical study abstracts cited by the manufacturer interesting; they're at http://neuropathytreatmentgroup.com/...inical-studies (click on the "show" buttons to reveal details.) Most of them have to do with mega-dosing with the 3 main ingredients: their particular kind of B1 (benfotiamine), methylcobalamin (B12), and alpha-lipoic acid; most of those studies were done in the mid-90s on rats and mice.

I know the ingredients are good for nerves, now it just remains to be seen if the actual product is as it claims. That's what brought me here.

Since this thread started, we have learned that lipoic acid is best absorbed in another form, called stabilized. This is a form that is highly water soluble and therefore, less is needed per dose,
and it is far more effective.

This formula does not give this ingredient as "stabilized".
So expecting a huge response from that one is not likely.

Some people need more of one thing than another. Some people may react negatively to one thing in a mixture like that and then have to stop the whole thing, thereby losing any benefits from the other ingredients.

In pharmacy we call this "shot gun" therapy. It may work, or it may partially work, or it may have to be stopped for some reason.

For example, I react to high dose lipoic acid... so I have to keep it at 100mg a day. At that dose using stabilized, I do get response, and had some good HbA1C results this last testing time. So that is just one example.

It can be difficult figuring out what is going on with PN however, and so we then see all sorts of "remedies" posted on our forum as a result.

I personally think people with Chemo damage, need different things than those with nutritional deficiencies, or autoimmune damage.

I tend to like to buy my supplements separately, and I choose quality manufacturing places with a good history of care and accuracy. When a new thing comes out we often don't know much about who makes it, for example. So there are many reasons to be careful. But being careful does not mean throwing away potential. ;)

Is there a thread addressing autoimmune damage specifically?

Thanks!

Not yet.... Autoimmune damage typically hits the axons and then
there is inflammation of the cells because cytokines are signaled to come to the damage.

So antioxidants, are helpful.
Grapeseed Extract
Vit C (this has shown promise in preventing RSD after trauma)
Lipoic acid

These are examples of inflammatory suppressing supplements.
There are others too. Antioxidants also are in foods, green tea, yerba mate tea, and colorful foods like blueberries and strawberries, etc.

Today there was link posted to here:
http://www.jneurosci.org/content/31/28/10128.abstract

This is the mito thread:
http://neurotalk.psychcentral.com/thread80999.html

Cipn
 

Dear mrsD
I have just joined as a member of NeuroTalk. I have CIPN since 2 years ago after my chemo treatment. I am not taking any medication or supplements at the moment although my oncologist prescribed Lyrica for me. I did some research and understand that there are side effects as with any medication. I am looking for supplements to help relieve my PN. Before I stumbled upon this support group, I ordered Vitamin B-6 (Pyridoxine)100 mg and Acetyl L-Carnitine & Alpha Lipoic Acid 650 mg from Swanson Vitamins. I have also come across PN supplements from WSN and Neuropathy Support Formula both of which contain various supplements in a single capsule. I am unsure whether I should order these supplements from them as I am not sure of their effectiveness. I have dealt with Swansons before and find them reputable. Are there other supplements that I should take other than those I had ordered? I aplogise if I am covering old ground. Please excuse me as I am a newbie.
Many thanks.

The primary supplement in the literature for chemo damage is
acetyl carnitine.

Here is a recent post similar:
http://neurotalk.psychcentral.com/post867845-3.html

Alpha lipoic acid is the OLD version with necessity for taking very high doses to get results. Only 1/2 the old type which is a mixture of left and right handed molecules is active in the body.

There is a new one with improved solubility as well. So the ultimate answer is R-lipoic stabilized. Doctor's Best is the one I use and many others here as well.

I don't like Swanson's at this point. I was using Doctor's Best Theanine this summer, and ran out and tried Swanson's, for a month. It really didn't do the same job the Doctor's Best does for me. So while Swanson's has some interesting things in their catalog, the SunTheanine they package was not as effective as Doctor's Best. You can buy brand names out of their catalog for most other things you know. But I find Amazon just as affordable with free shipping over $25 now.

My comments earlier in the post are what I think about Neuropathy Support Formula. If you want to take that mixture and have the extra money for it... just take it on an empty stomach. It has the old alpha lipoic in it too. Keep that in mind.

Is this Neuropathy Support Formula something that would help for shingles-related neuropathy?

Thank you very much mrsD for your prompt response. I have ordered Doctor's Best R-Lipoic Acid Stabilized, Source Naturals Methylcobalamin, Vitamin Shoppe Acetyl-L-Carnitine, and Source Naturals L-Theanine from Vitamin Shoppe. Some of the stores do not ship health supplements to Singapore eg Amazon.
Your willingness to help others with medical problems is exceptional and is to be applauded and I appreciate that very much. I will keep you updated on my progress once the supplements arrive. They informed me that they are on the way and I eagerly await their arrival. Best wishes to you.

David, will be interested how you go with delivery. I used iherb to Australia, $12 shipping and arrived in about 1 week.

Thanks RideOn
I will check iherb out. The shipping charge from Vitamin Shoppe was about $65 for about 6 small bottles. Cheers

iherb.com is wonderful. They have so much there, and are prompt and the products have long expiration dates, and they ship just about anywhere. Their discounts are good too.

Hi mrsD and RideOn
Just to let you know that I have ordered some bottles from iherb and yes they have a wide range of products. Their catalogue is also very organized and I can find lots of products under the doctors best brand. Their shipping charges to Singapore are just $12 by DHL, otherwise its free if tracking is not required. Their product prices are also cheaper for a start.
I will certainly go back to them for future supplies.
Thanks again for this recommendation RideOn.
Wish all good health.

Regarding "Neuropathy Support Formular"
 

I Have been following this thread.
This product has been available for a while now.
I have noted mrsD's comments about it, but was wondering if anyone has actually tryed it & if there have been any results either good or bad.

Neuropathy
 

I have had diabetic neuropathy for years. Strted in fee and working it's way up. I would like to know if this Neuropathy Support Formula is any good and if it is a problem with any medications? Also, I presently take B50 Complex and a Vitamin D every day. If I start on this Support Formula, should I stop taking those pills?

The support formula has B6 and B1 in it already. I'd drop the B50.

But you should read our forum first, before trying that product.
You may not need everything in it, or you may need more of one thing than another. The herbs in it are basically in such a small amount as to be rather useless.

here is another thread:
http://neurotalk.psychcentral.com/sh...upport+formula

You can use the "search" function and find more comments.

Diabetics should get tested for B12 and Vit D levels. Sometimes proper B12 supplements may do the job for anyone who is low (below 400 in US units), for example.

This product is expensive IMO.

Neuropathy Support Formula
 

For what it is worth, about six months ago I was struck with an excruciating, throbbing pain in the left leg. I went to an urgent care center and it was diagnosed as "peripheral diagnosis." I was told that it may or may not go away, that if it did, it could come back, that it was difficult to determine the reason for it, and that anything they might give me may or may not help. 800mg doses of ibuprofen and vicodin failed to do much. I also tried muscle relaxers, which also did not work, but expected if it was truly a nerve issue. The only thing that helped was heat. I was skeptical, but desparate, and ordered this product. I have been taking it since. Since the onset of the neuropathy, after about ten days the pain in the left leg started to subside and eventually went away. However, I was left with numbness in the leg, but that is also pretty much gone. However, about the time the pain in the left leg went away, I got pain in the right leg. However, it was "different" and did respond to ibuprofen. I thought that perhaps I had tweaked it compensating for the left leg when it was in pain. In the meantime, I saw my primary care physician who seemed convinced it was something to do with either my hips or lower spine. Various tests and numerous x-rays revealed nothing. I should also note that I was treated for prostate cancer (hormone suppressants and radiation), ending over a year before this began. My oncologist does not believe that the radiation was the cause, but I have talked with others that did have nerve issues following radiation. I do not know. About a month and a half ago, suddenly my right leg (that still had the residual "different" pain) went through exactly the same cycle as the left (starting with the throbbing, excruciating pain), but it was a bit less severe. Again, the pain eventually went away entirely, but leaving some numbness. Now all pain is gone from both legs, as well as the numbness for the most part. Did the Neuropathy Support Formula help? Who knows, but I am unwilling to dismiss it. I have, however, recently reduced the dosage by half (2 capsules/day instead of 4). So far so good.

Neuropathy Treatment Group
 

I would note that the address on the website for "Neuropathy Treatment Group," 3855 W Lorenzo Lane, Eagle, Idaho, is a house (when viewing it on GoogleMaps). Yet on their website they show what appears to be an office building. I know nothing about whether their product is what they claim it to be, but this, to me, is a bad sign. Not to mention there are no staff shown on About Us, no names of their doctors or researchers or scientists (which they refer to in their website). Doesn't smell right....

My Nerve Support Formula has basically the same ingredients and amounts. But directions says to take with meals. Now I am confused.

Markneuro1, I share your unease about the "Neuropathy Treatment Group".

As far as I can see from the site there is no evidence that any health professionals are involved with it.

There are lots of "special just for you" offers there as well as many unsupported testimonials, both of which are red flag warnings for me.

I was cynically amused to note that the site asserts that "Our manufacturing facility is FDA approved". This conflicts with its disclaimer : "The statements made on our websites have not been evaluated by the FDA".

I don't live with peripheral neuropathy but if I did the Neuropathy Treatment Group would be very low on my list of sources of support

If you look at the reviews on Amazon.com about their product most say it did nothing for them and the reps hounded them to buy more.

Cliffman :)

Most commercial products say to take with food.

B12 is not well absorbed orally however, and with food just about ruins its tiny benefit.
lipoic acid also shows in studies decreased absorption (the racemic mixture that is).

But other vitamins can be taken with food.

Products with B12 in them therefore should be taken on an empty stomach, if you want the benefits. (Studies have shown this true with RX drugs too, that come in microgram doses--thyroid hormone, and digoxin are examples).

When one sees this glaring error on labels of B12, that is a sign that the makers are not scientists, or do not read the literature on what they are selling.

So the Amazon reviews may reflect the fact that many are following label directions and would explain why for some there is no benefit. Those with CMT won't benefit much except for other body functions (not the nerve damage). Research into CMT has not yet found a supplement benefit yet. The hopeful Vit C issue about 10 yrs ago looked promising in animal models, but it fizzled in humans.