amino acids...

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving WED/RLS, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.

amino acids...

Postby mbsweeney » Thu Oct 25, 2012 8:55 pm

I wanted to thank KTATUM01 for the post on amino acids...

I started doing the combo of Beta-Alanine and Arginine right after I read your post. Seriously. I went right to my neighborhood supplement store, picked some up and started using it that night! Over the last four months if I even thought for a second that they weren't working, all I had to do was not take them before bed. I always have to get up an hour or two later to get the relief that I need.

Research on this is critical. I live near the Booth Gardner Parkinson's Clinic in Bellevue, WA, and will try to contact them about this and will post what I learn.

Having had WED since I was 16, I have tried nearly everything on the "what works" list (except traction). I have augmented on Requip and am currently experiencing rebound on Mirapex. If someone suggested that licking the end of a Rhino would help, I might think about trying it. The amino's have been the best thing to happen to me since I first started taking Requip.

I don't post here often, but have gained a huge amount of information from visiting over the years. I want to give a huge thank you to the board moderators and participants of this site for the tremendous level of experience and support that I see here!

Best to all,
Michael
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Re: amino acids...

Postby rthom » Wed Dec 05, 2012 8:04 am

Did you learn anything new?
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Re: amino acids...

Postby badnights » Fri Dec 07, 2012 5:28 am

mbsweeney, since ktatum01 removed his post, do you know the proportions of Beta-Alanine and Arginine you're using?
Beth
AUGMENTATION http://www.willis-ekbom.org/document.doc?id=2324
viewtopic.php?f=5&t=6532&p=61601#p61601
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Re: amino acids...

Postby JanDell » Wed Feb 06, 2013 9:04 pm

badnights wrote:mbsweeney, since ktatum01 removed his post, do you know the proportions of Beta-Alanine and Arginine you're using?


badnights I'm new to this bb. I've progressively worse RLS for the last 1.5 years. Now it's every day all day. Luckily I'm able to get to sleep at night for 3-5 hrs. Did you get a reply to your question? I've tried to send you a private message, but guessing I'm doing something wrong, so I'm posting here. If you did get a reply or found out the answer will you please pass it on to me as I can't find the answer to this question any where. Thanks
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Re: amino acids...

Postby badnights » Sat Feb 09, 2013 6:56 pm

No, I didn't ever get a reply. It's worth just trying any old combination. There is another amino acid supplement that I use sometimes and that someone else here uses faithfully and is sure it has lightened her symptoms, and that is GHP by Nutralife. I can't swallow six of those pills, my throat seizes up and refuses! so I just take one a day. I think it helped my sleep when I was choking down six, but it didn't seem to help the nasty sensations and urge to move.

Another thing to look at is your vitamin D and ferritin levels. Low Vitamin D levels have been associated with RLS/WED, so get your level above 30 ng/ml. If your doctor won't test or you can't afford it, I suppose you could take a supplement anyway, but I advise you to get tested first to be sure you''re not high. Most North Americans are low in D, tho; perhaps northern Europeans too but I haven't read that. I take 3000 or 4000 IU daily, which is quite high, but my symptoms get worse over about 2 weeks if I drop down to 2000.

Ferritin is a blood test you really have to spring for if you have RLS/WED. Levels of this protein in non-RLS people can be as low as 20 ng/ml without ill effect, but levels under 50 have been associated with increased severity of RLS/WED and an increased risk of augmentation on the DA (parkinsons) drugs. Some WED/RLS specialists now recommend aiming for 100 ng/ml. Levels can be raised in many people (not all ) using oral iron supplements (I take 600mg ferrous sulfate daily, with vitamin C which is needed for absorption), and in those cases where levels are raised, the patient often notices an improvement in symptoms.

I caution you to observe yourself from a distance and ask yourself why you feel lucky to be getting as much as 3-5 hr sleep. That's a paltry poor amount and will be impacting all aspects of your life, including the ability to think straight and make good decisions. I know how we get to think it's great - by going with even less! but this is not normal, and your aim right now should be to re-acquire a normal life, including sufficient sleep. There is a danger of accepting a lower quality of life than is available to us, simply because the quality of life has been eroding so slowly that we get used to it.

3-5 hr sleep is not enough.

You don't say if you;re taking medication. Either you need to start or you need to change what you're using. Most people can find relief and get their lives back in order, so do some more research on this disease that's taking your life away ! This board is a good place to do some initial digging. This document is a good summary of treatment options, though it doesn't mention the D or the latest advice about ferritin because it pre-dates that research:
RLSF Medical Bulletin (2011 version) Aimed at healthcare providers, written by physicians, this document is very useful for patients who want to understand the disease.
Beth
AUGMENTATION http://www.willis-ekbom.org/document.doc?id=2324
viewtopic.php?f=5&t=6532&p=61601#p61601
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Re: amino acids...

Postby badnights » Sun May 19, 2013 10:21 pm

Hmmm ... turns out I did have his recipe written down:

RapidDrive Arginine 5000 and Beta Alanine 3200
-these are powders that come with scoops in the containers
- use 1/2 scoop each (which is equivalent to 5 g arginine and 2.5 g beta-alanine)
- mix into water and drink within 5 minutes
Beth
AUGMENTATION http://www.willis-ekbom.org/document.doc?id=2324
viewtopic.php?f=5&t=6532&p=61601#p61601
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Re: amino acids...

Postby Chipmunk » Fri May 31, 2013 6:07 pm

badnights wrote:No, I didn't ever get a reply. It's worth just trying any old combination. There is another amino acid supplement that I use sometimes and that someone else here uses faithfully and is sure it has lightened her symptoms, and that is GHP by Nutralife. I can't swallow six of those pills, my throat seizes up and refuses! so I just take one a day. I think it helped my sleep when I was choking down six, but it didn't seem to help the nasty sensations and urge to move.

FYI, Somalife was sold to a Canadian(?) company last fall and it seems they have changed something and they are not working as well anymore. :( The first batch I got it seemed the gelatin capsule was thicker and shinier and I don't think it was dissolving properly. The next batch I got, the shell seemed back closer to normal but I don't notice a drastic difference in sleep quality if I miss a day like I did before. Next time I order I am going to try the GHP Sport that is certified. It's $10 more per bottle, but it's worth it to see if they are using different materials for the non-certified one. If they still don't work, ugh, I will be so disappointed!! :cry:

As far as taking all six at once, what I do is take them with breakfast. I take a pill and then eat a bite of food. Pill, food, pill, food, pill, food, ad nauseum (not literally, thankfully!). I found taking them with orange juice helps them dissolve more quickly as well but I can still only take 2 or 3 at once without food even using orange juice. There's something about their shape or size that creates a pile-up in my esophagus that is SO painful if I try to take them all without food.
Tracy

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Re: amino acids...

Postby badnights » Sat Jun 01, 2013 6:39 pm

Wow, I admire your dedication. I might be able to do that, but it would be tough. I have trouble with normal pills, and the more I take the harder it gets, so I could choke back two of those then I would gag repeatedly on the third. But if I was patient, and ate some food in-between.....

I have the gHP Sport. At the time I got it it was all the distributor had on hand. I looked it up and at the time, it had exactly the same ingredients as the regular kind, and I believe that they even said that on their website, that the only difference was some sort of certification process - maybe it involved quality control processes on certain batches? They had a kosher one too, that was also identical.

It would be worthwhile to write them and ask what, if anything, they have changed. You could tell them why, which might interest them (possible marketing ploy), but if they answered you honestly, you might have discovered something of use regarding WED.
Beth
AUGMENTATION http://www.willis-ekbom.org/document.doc?id=2324
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board moderator's posts do not represent the opinion of the WED Foundation & are not medical advice.
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Re: amino acids...

Postby Chipmunk » Sat Jun 01, 2013 6:43 pm

I wrote in their Facebook page (I'm pretty sure the post is still there if you go to their page) and they responded once but then I never heard anything back again. I saved a couple pills from the bad batch for comparison. I'm placing an order today for the certified ghp sport and I'll see how that goes.
Tracy

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Re: amino acids...

Postby Wendy1961 » Mon Jul 08, 2013 5:07 pm

My mother and I both have RLS/WED, but Mom's is WAY worse. She has it every night and most of the day, whereas I only get it occasionally. Sometimes we each get it into our arms too, but mine seems to be in my joints (knees & elbows) and hers seems to be more generalized. She's suffered with it since she was about 15 (she's 77 now), but mine is fairly recent, within the last 5 years. To give you a little background:

Mom & I both had our ferritin levels checked, and we're both actually fine in that respect. About a year and a half ago I found out my Vitamin D levels were way low, so I've been taking extra every day and now they're fine. Neither of us drinks anything with caffeine after noon. I fall asleep about 11:30 and can't sleep when it's daylight, unless I'm ill. A remnant from my upbringing, I guess. Mom takes naps throughout the day. The side effects of Mirapex and Requip are just more than we want to deal with unless there is no other alternative and we're desperate. They mess with your memory, and that just scares the crap out of me! The poppyseed tea and kratom (which I'd never heard of before) are a little too close to narcotics, and we're trying not to use those.

The amino acids seemed to hold promise, so I did some research with Google, and there's this company called Western Reserve Labs that's using them and some spices, so I went ahead and got their trial package. (Hey, it was free!) I got a separate sample for my mom too (we live at different addresses). They claimed it would stop the restless legs feelings within 3 days.

Like I said before, I'm not a constant sufferer like Mom, so I didn't want to try them unless I felt the tingling in my knees (where mine starts), but Mom tried hers the day we got them. She followed the directions and took 1 capsule about a half hour before she went to bed, and she slept all night with no problems. I was still a little leery--I mean, come on, if something's gonna work, and work that fast, maybe it was just the placebo effect or something. So she took another capsule the next night, and had the same result! I was happy for her, but still thought it might be just coincidence. A happy coincidence, but still a coincidence. But she's been taking them every night for about 2 weeks (I gave her some of my trial pack since I didn't need all of them--more on that in a minute) and they've worked every time!

For me, it wasn't till about the fourth or fifth night after we got the capsules that I felt that familiar but incredibly AGGRAVATING tingling/tickling in my knees. I took a capsule with some warm water and within 20 minutes, THE TINGLING WAS GONE! I didn't trust it, so I tried (mentally) to make the tingling come back. (Weird, I know, but I just didn't want to be disappointed again!) Not only couldn't I make it come back, but any time I've had any problems since then, IT'S WORKED EVERY TIME FOR ME TOO!

I ordered a whole bottle for Mom & me to split, just in case it ended up wearing off, but so far, it hasn't! I don't know if this will work for everyone, but it worked for both of us, so I had to tell you about it. Just Google the lab name and you'll get it. I hope it works for any and everyone who has this, because this is HELL and the relief is amazing! I'll keep you posted about our adventures with this!
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Re: amino acids...

Postby rthom » Mon Jul 08, 2013 5:20 pm

Thanks for that--great news for you both! I hope it keeps working for you both, let us know.
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Re: amino acids...

Postby Chipmunk » Mon Jul 08, 2013 5:37 pm

I can't find the site anywhere. Would you mind posting a link?
Tracy

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Re: amino acids...

Postby Wendy1961 » Mon Jul 08, 2013 9:06 pm

I didn't know if I was allowed to do that. http://www.WesternReserveLabs.com
Last edited by Wendy1961 on Mon Jul 08, 2013 9:29 pm, edited 2 times in total.
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Re: amino acids...

Postby Wendy1961 » Mon Jul 08, 2013 9:11 pm

If the above link doesn't work or gets deleted, try googling "Western Reserve Labs" (with quotes) or you'll end up at Case Western Reserve University.
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Re: amino acids...

Postby Wendy1961 » Thu Aug 01, 2013 6:48 pm

I just wanted to let everyone know that the stuff my mom and I are using from Western Reserve Labs is working GREAT! I went on a short vacation last week and took a few capsules with me just in case, and I'm glad I did. I needed one after being out riding bikes and swimming. I couldn't even sit at the computer one day, so I took one. For some reason, I thought it would make me sleepy (cuz I use them at night to get to sleep? I don't know), but it didn't, and I was able to sit and do some work even while on vacation!

If anyone else decides to try them, please let me know if they work for you too. It would be so wonderful to be able to help others like me and my mom. She's getting the rest that she needs now because of these capsules, and I'm just so relieved that she feels better.

Thanks for listening!
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