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I hope this is the Vitamin Supplement thread. Long post, but I thought interesting info

In my quest to try and figure out how best to manage MS, I’ve discovered more interesting research on ALCAR. In addition to potentially helping with the fatigue, it seems ALCAR may have a neuroprotective role in MS, a very speculative peripheral nerve regeneration role (based on a non EAE rat study) and, in other research also unrelated to MS, improve symptoms of male aging. (Guys, you have to read this, it’s too good!)


ALCAR and Neuroprotective Role ?

Italian researchers conducted a study of 10 patients with MS and 12 control patients (non MS). The MS patients were given a daily oral dose of ALCAR for six months. (In one place the article states the oral dose of ALCAR administered was 2 g/day and in another 2 g/kg per day ???.)

While there is no way I could begin to understand the chemistry involved, recent discussions that MS may not be an autoimmune disease made the concluding remarks even more interesting:

“…. despite increasing research efforts and although several explanations have been proposed for destruction of myelin and oligodendrocytes in MS, there is still no proven mechanism of injury. The possibility of manipulating these complex glial cell functions and controlling their pathologic interactions with immune cells probably will illuminate how myelin damage can be contained and how the injured tissue can be repaired. In conclusion, our data sustain the hypothesis that nitrosative stress is a major consequence of NO (nitric oxide) produced in MS-affected CNS and implicate a possible important role for acetylcarntine in protecting brain against nitrosative stress, which likely underlies the pathogenesis of MS.”

Reference: Calabrese, et al, Disruption of Thiol Homeostatsis and Nitrosative Stress in the CSF of Patients with Active MS: Evidence for a Protective Role for Acetylcarnitine, Neurochemical Research, Vol. 28, No. 9, Sept. 2003, pp. 1321-1328.

(Also note, the March 2004 MS Society Research Bulletin (#32) contained the following statement, among others in its summary of a Russian research study on NO: “NO production in the bloodstream appears to be ongoing in people with MS, and may contribute to fluctuation of MS symptoms, rather than disease activity.”)


ALCAR and Peripheral Nerve Regeneration in Rats (Not EAE Rats)

Select lines from an abstract by McKay, et al (PMID: 12453625) are intriguing. “Peripheral nerve trauma remains a major cause of morbidity, largely due to the death of approximately 40% of innervating sensory neurons, and to slow regeneration after repair. Acetyl-L-carnitine (ALCAR) is a physiological peptide that virtually eliminates sensory neuronal death, and may improve regeneration after primary nerve repair.”

The abstract concludes ”…ALCAR significantly enhances the regenerative capacity of neurons that survive peripheral nerve trauma, in addition to its known neuroprotective effects.” The study reports statistically significant increases in rat nerve fiber areas (229% increase) and Schwann cell areas (86% increase) when compared to no treatment.


Carnitine and Male Aging (Not an MS Study Either but Fascinating and Fun Information)

This was just too good not to include! Taken from an online article “Carnitine Improves Symptoms of Male Aging” by Laurie Barclay and Charles Vega.

130 guys, mean age 64 years, completed the study and randomly received 1 of 3 treatments: testosterone, propionly-L-carntine 2g/day plus acetyl-L-carntine 2g/day, or placebo for 6 months. Selective quotes:

“Carnitine is more active than testosterone for improving symptoms of male aging…according to the results of a randomized study published in the April issue of Urology.”

“Both male and female sex hormones increase L-carnitine levels…Carnitines act as antioxidant… while also decreasing apoptosis via a reduction in ceramide levels along with insulin-like growth factor.”

A few punch lines from the findings:

“Carnitine was superior to testosterone in the 3- and 6- month erectile function domain, the 6-month orgasm domain, and the 6-month general sexual well being domain.”

“Both carnitine and testosterone improved depression scores compared with placebo, but carnitine was superior to testosterone in this variable.”

“Fatigue was improved to a similar degree in both active treatment groups compared to placebo.”

So, now we know, Viagra didn’t help women with MS, but ALCAR for men with MS? Who knows! Looks like lots of possibilities here….

And, just so everyone knows, according to the online article, two of the authors of the study are patent inventors for the use of carnitines in treating symptoms of male aging.

Reference: http://www.medscape.com/viewarticle/473414 Carnitine Improves Symptoms of Male Aging, April 14, 2004.

Conclusion

All in all, it’s starting to look like ALCAR is a supplement for people with MS to consider. While it’s over the counter in the US. and from what I’ve seen on the internet, some stores ship it to the UK and other countries (? Finland), but not to Canada. So, unfortunately, ALCAR may not be available over the counter there.

My pharmacist originally recommended ALCAR, so I’m taking it. Has anyone else tried it?

Sharon

Yep, I have been taking Acetyl L carnitine for about 12 months - 1000 mg x 3 times a day, at least 40 minutes before food, I also take L-carnitine (x 1 500 mg) too. Plus Alpha Lipoic Acid - 300mg x 3 times a day (with food). Together they work on tiredness and memory/cognitive problems.

This combination has had an amazing affect on my energy levels. My MS is quite mild -symptom wise -but for all that I have quite a lot of relapses and this combination of supplements means I have expereinced little or no tiredness during relapse. I have been able to work throught the relapses (I'm a Marketing Director) often 6 days a week from 8 to 10.

I notice if I don't take the supplements then I do get tired. It takes very little time to kick in. Make sure you get a carni pure formulation with no D carnitine in it.

best wishes,
Felly

Thanks so much for the info!

Sounds like you know a lot about ALCAR and alpha lipoic acid. I had no idea you were supposed to take ALCAR on an empty stomach.

I've only been taking 500 of ALCAR 2x day and as far as I know it's pure. At least it's labeled that way. I'm also taking 300 mg of alpha lipoic acid 3x day. I think the alpha lipoic acid really helps the burning, numbness and tingling.

I just upped the ALCAR this week from 500 1x day and do think I have a bit more energy taking it 2x day.

Two more questions do you know a good on line source (i.e., cheap but reliable) for the ALCAR? And, I haven't seen anything about possible side effects of ALCAR, is there any info on that?

Wonderful that you seem to be doing so well too despite the "frequent" relapses.

Thank you again for the info. I really appreciate it.

Sharon

Hi Sharon,

The study you refer to shows ALCAR can be more effective than amantadine in controlling fatigue, an earlier study with people with Chronic fatigue syndrome had the same results and came to the conclusion that it works effectively only when plasma and muscle levels of carnitine are lower than average - i.e it has no effect on 'normal' healthy people. Carnitine has also been shown to improve balance and short term memory

A-Lipoic Acid has also shown to improve diabetic neuropathy (numbness, tingling etc) in a couple of trials a few years ago and in 2002, was found to inhibit the migration of T-cells in EAE. And it may be useful in AD and possibly MS because of it's powerful anti-oxidant effects too.

ALCAR is difficult to absorb unlike a -lipoic acid. Which, by the way, is also helpful with liver problems (so a plus, along with milk thistle, for anyone taking interferon). Both together should be taken for maximum benefit.

I'm in the UK and import from the US (good pound to dollar rate makes it cheaper for me than buy in the UK). I use iherb.com and order Doctors Best 500 mg Best Acetyl L Carnitine and the same for A-lipoic Acid.

It most definitely helps with fatigue, I rarely get very tired and even then it's only when I have relapses.

My neurologist refused to believe I was having relapses because I have no objective symptoms on examination, still don't. Since diagnosis, I have been 00 on the EDSS , with the exception of my first big attack (when I had L'hermittes and I went up to 1.0 briefly.)

In two years, I have had about 5 relapses (not counting 'pseudo' relapses in menstrual cycle) and I remained at 0.0. I have managed all relapses without steroids - well, they are hardly going to give me anything when they refused to believe I was having relapses!

Every time I would see my neurologist he could find no 'objective' evidence. So it was a weird kind of relief when my MRIs showed new lesions corresponding to the areas I was having 'subjective' symptoms, something my neuro found extremely hard to explain.

So even though I am still 00, because the MRIs have showed up new lesions at corresponding times and places to my symptoms my neuro recommended me for Disease Modifying Drugs.

Possibly, one could speculate, my supplement regime, although it cannot halt the MS, has helped to keep it at a lower level than it might be otherwise given the frequency of relapses. Who knows...and, personally, I'm not prepared to take the risk, hence going on to rebif.

Take care,
Felly

Ooops, I should add I take a lot more than just these two supplements. I take masses of things and it's the combination I refer to when I say it may have some effect on my symptoms etc.

I have a background in medicine and when I was diagnosed did my Masters in biochemistry and am now in my third year of a part-time post grad diploma in nutrition so try, as much as possible, to keep up todate on both allopathic and non- traditional medicines and research.

Felly

Felly--you're a tremendous resource.... please join us here at This is MS.

I'm afraid to ask, but given your great results so far, what other supplements are you taking? What supplements do you think are a "must" for people with MS?

I'm less than a year into this MS so am still trying to figure things out that I think might work. I'll check out the sources you identified. So far I'm paying about $21.00 for 30 500mg ALCAR at the local health food store.

Thank you again and I do hope you will continue to "share" your expertise.

Also FYI since you're a Brit, I was in Buenos Aires a few weeks back and Sir Robin Christopher, I think British Ambassador to Argentina, is sponsoring an "ART for the Cure" (for Esclerosis Multiple Argentina) art auction there on May 11th. I thought that was great when I saw it in the paper.

Anyway, do take care...when are you starting the Rebif? I'm on Avonex.

Sharon

Felly... please register (on the front page, right hand side)-- I'd like to send you a note.

Deleted

Felly, how great that you've joined This is MS!

Thank you also for your very thoughtful, considerate and sage advice. I do agree that I'm still in the shock, denial and anger phase emotionally and don't take that as patronizing.

Will pm you about nutrition evaluation. I do agree that all management needs to be individualized. I think I'm trying to be cautious in trying to figure out how to best manage "my" MS.

I researched ALCAR cuz pharmacist recommended it...and, low and behold found info related to MS. Same with alpha lipoic acid, plus it helped some of my symptoms. The other "MS" related supplements that I've read about are Vitamin D3 and whatever fat is in sunflower seed oil.

The US National Insititutes of Health (NIH) Complementary and Alternative Medicine site listed the sunflower seed oil for MS. I've read several references for Vitamin D3, and the Oregon Health Sciences University (OHSU) has an NIH contract for complementary and alternative medicine for neurological disorders and they are studying MS and alpha lipoic acid. While I hope I'm going to reputable sites for info, your advice to proceed with all due caution is excellent.

I really want to hear your thoughts about MS being a syndrome. When you have more time, perhaps you can post or write an article about that.

Thank you again Felly.

Sharon

I saw this posted on the Boston Cure website

"Two reports from the recent American Academy of Neurology show researchers looking into the effects of a common nutritional supplement, Alpha-Lipoic Acid. ALA suppresses EAE by inhibiting T cell migration into the spinal cord and does so partly by inhibiting matrix metalloproteinase-9 (MMP-9) activity. Effective dosage appeared to be at 1200 mg/day; at 600 mg/day, there was no increase in the serum blood level of ALA. Abstracts on the two studies are here and here."

Hi there
I am interested in dietary supplements, having noticed a flurry of posts around this topic... where can I find more info on ALA and ALCAR? Under what form do they sell and where? How can I get more info on dosage? I live in the UK and any local info would be particularly useful!
Thanks

Frogman wrote:Hi there
I am interested in dietary supplements, having noticed a flurry of posts around this topic... where can I find more info on ALA and ALCAR? Under what form do they sell and where? How can I get more info on dosage? I live in the UK and any local info would be particularly useful!
Thanks

Try Googling for it. Alcar is available in 500mg capsules, and from what I've read, you'll need over 1000mg/day so that means at least two capsules.

Be careful, there is also "l-carnitine", which is good for the heart, but not the same as "acetyl l-carnitine", which is the stuff that should help MSers.

Frogman

One of the most comprehensive articles I've found on alpha-lipoic acid is at http://lpi.oregonstate.edu/infocenter/othernuts/la/

Strange address, but it's the Linus Pauling Institute Micronutrient Information Center at Oregon State University. It's a general but well referenced article and I think the source is reliable.

In US, it's on the shelf in drug stores as alpha-lipoic acid. Hopefully someone from UK will check in and let you know how to find it there.

Best wishes

Sharon

Hi there,

If you go back to an earlier post in this thread you will find more details in reponse to Sharon as to the best kind of ALCAR to take and at what dosage etc. It is avaible in the UK, but with the current dollar/pound exchange I find it cheaper to import from the US. I also give these details.


Someone also mentioned L-Carnitine is for the heart, yes it is but it has also been found to help with getting energy to every muscle in the body and this is no bad thing with MS so I also take x1 500mg of this a day as well as ALCAR and Alpha Lipoic Acid which works in synthesis.

Felly

Hello all,

My wife has recently been diagnosed with MS (via spinal tap), and we decided to give ALCAR and R-ALA a try.
I'm a fitness buff and I know the benefits of these supplements and happende to have them both in power form. In the next couple of months we'll check back with you all and let you know how this is going.