Getting better too quickly... is it a bad thing?

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby notasperfectasyou » Sun Jan 13, 2008 8:56 pm

I'm very interested in this discussion, however, I'm not seeing product brands to enhance the explanation.

Here's a link to the NAG we tried for a little more than a week. Kim took 2 tablets a day.

Perhaps it's a coincidence but Kim began an 2 month decline shortly after starting the NAG and we stopped taking it and Kim was not able to recover until last week.

While I can't finger NAG, I can't unfinger it either. I'm wondering if it's about dosage. Based on the 4 pages of thread, I can't really tell what the working product is. Can you post a link like I have above?

While I don't have a happy story about NAG, I'm very interested in seeing if our dosage was not set well in order to get the effect. Are any of you using Ambrotose? Ken
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Postby CureOrBust » Mon Jan 14, 2008 2:06 am

notasperfectasyou wrote:I'm not seeing product brands to enhance the explanation.
I am trying the Jarrow product which I bought from iHerb (http://www.iherb.com/ProductDetails.aspx?c=1&pid=131&at=0)

notasperfectasyou wrote:Based on the 4 pages of thread, I can't really tell what the working product is. Can you post a link like I have above?
I don't know if the product is working or not for me, but I will be placing an order tonight for more, as I ordered only a single pack. If I had to go one side or the other, I would say yes, maybe...

With Kim's experience, I would be like you, very cautious to be trying it again.

notasperfectasyou wrote:...I'm very interested in seeing if our dosage was not set well in order to get the effect. Are any of you using Ambrotose?
I take 4 to 5 tablets at 750mg twice a day. Again, cant really say if it is helping too much.

I tried Ambrotose, and found nothing at all. I did finish just short of one pack, and people say you have to give it more time.
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THANK YOU!

Postby notasperfectasyou » Mon Jan 14, 2008 7:56 am

Thanks, I appreciate your reply.

So Kim was taking 1000mg/day and you are taking 3000-3750mg/day.

Are others seeing this benefit here?

Ken
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Postby robbie » Mon Jan 14, 2008 9:37 am

Loobie, hows the NAG working for you?
Had ms for over 19 years now.
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Postby Loobie » Mon Jan 14, 2008 2:47 pm

Robbie,

I PM'ed you.

Lew
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Updates anyone?

Postby mvisconte » Fri Jan 18, 2008 8:07 am

Anybody got any updates?

I am looking at either N-A-G (bulk, vs tablet) or a glyco-blend (I don't have the list w/ me but I'll see if I can find it when I get home)...

I realize that everybody responds differently to different approaches, which is why some folks get benefit from chiro (recent Montell Williams video) or nutritional / vitamine supplimentation while some folks need IV steroids or worse.

M.
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Postby L » Sat Jan 19, 2008 11:20 am

Hello

I read this thread with interest. I have been taking three or four 750 mg capsules of NAG daily for the past ten months.

After I read this http://www.patentstorm.us/patents/48700 ... ption.html
and tales of the substances 'surprising buccal absorption' I began to break the capsules apart, tip my head to one side and empty them onto the inside of my cheek.

I have no idea whether this helps the substance be absorbed but it isn't unpleasant (the stuff is a sugar, after all).

I have not noticed any improvements since I started the regime. I always thought that the best that I could hope for was a cessation of relapses and did not imagine that it would promote myelin renewal.

I am really surprised that people have even noticed the effects of NAG - I have never felt a single thing, no anxiety as reported here and no improved health. Some symptoms have improved over the past year, everso slowly, perhaps the NAG played a role in this. I have no idea. To be honest, I had no expectations. Except for the fact that it may have been guarding against relapses, I may as well have been allowing a spoonful of caster sugar to dissolve on the inside of my cheek, for all I have been aware. I haven't had a relapse since I began taking it (for the last five years I have had one or two a year). Incidentally I am on a super low fat/animal fat free and dairy free (I am vegan anyway...)

I am very interested, as Lyon has touched upon, in whether MRTCs can be isolated in somebody presenting themselves for a Tovaxin preparation, somebody who is a regular NAG user or whether they do, in fact, become masked my NAG use. Has anyone yet been in a position were they can say that a preparation could not be made, perhaps due to NAG use?

Sorry about this thread, many of you may now have to spend that extra time every day breaking capsules...
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Postby Jim_P » Sat Jan 19, 2008 12:28 pm

L-

I'm getting the powdered form that I mix with orange juice. I really assume that is the best drink to mix it with for absorption.

Only thing is, the powdered is more expensive than some of the capsule bottles I've seen.

Along with NAG, I'm also taking triple strength Glucosamine Chondroitin. I've notice better results with both together.

I'm obviously not fixed, but I can stand up and urinate from time to time.

There are even days when I don't need to squat to pee at all. I get so excited on those days and you've probably read my excitement on here.

I'm walking much steadier too.

However, one really bad week came after partying too hard all night New Year's eve. What a crappy way to start a new year. Can't hang like I used to!

I thought, at the time I had another flare up because I was having trouble walking down steps again. I was scared, so I took a little more NAG than usual that week and improved.

So, I can't tell if I had a flare up and NAG helped that, or if I just had a ghost of prior symptoms for a few days. Mostly worse New Years day. I improved pretty rapidly (if it was, in fact, a flare up)
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Postby CureOrBust » Sat Jan 19, 2008 3:28 pm

I haven't cross checked their claims, but "patentstorm" is not a repository of peer reviewed articles.
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That nagging feeling...

Postby mvisconte » Mon Jan 21, 2008 7:06 pm

CureOrBust wrote:I haven't cross checked their claims, but "patentstorm" is not a repository of peer reviewed articles.


Patent Storm is a portal into the patent system. Are there peer-reviewed patents? ;-)

This might be an interesting indication that perhaps NAG has some serious potential benefit... why else would someone try to patent the USE OF A NUTRIENT? If they patent it, they can control it's use for that purpose and claim licensing fees.

If the patent thing goes through, then *I'm* going to patent something... like maybe "the use of common elemental gas mixtures to prevent hypoxia" or "the use of hydrogen hydroxide in the prevention of dehydration". Then, I'll sue anybody who breathes or drinks water without paying my exhorbitent licensing fees. Mwa-ha-ha-ha!

And, just for safety's sake, I'll only let people read my patent brief twice, through louvered blinds... I can then get a double blinds peer review. You may insert a joke about reading on a jetty with royalty here, if you like.

OK, back on topic... nope, I lied.

So, which trials are more likely to get serious review and promotion:

Trials of a controlled drug that cost the developer $50 millions of dollars, and will sell for $500 per dose for $25000 for a year's treatment, or

Trials of an inexpensive, easy to obtain amino acid, vitamin, oil, etc., that can be purchased by anyone?

Now, the first medication may help about 30% of the people who stay on a long regimin, but you can't really tell until the autopsy. Blood tests have to be done periodically to ensure that the patient isn't rejecting the medication or building up a tolerance to it.

The second seems to help maybe 3 out of 10 people -- of those three (of ten) it benefits some more and some less. It's not toxic. The "normal" person does not have a deficit and does not have a problem metabolizing the components -- so it's highly unlikely that a "patient" would, either.

The first requires several doctors' reviews, and a prescription, lab work, follow-up lab work, and the doctor controls what goes on.

The second is in the control of the patient who does his/her own "peer" review, and decides wx to try or not, based on anecdotal evidence (because, face it, REAL science wouldn't touch that foo-foo, childish, wishful-thinking, voodoo, black-magic crap with a 3.3 meter pole). The patient is in charge of what to try and when and where -- but any results are not valid, because therapeutic benefits may just be the result of the sense of well-being or empowerment from being in control.

Some people will have to quit the first treatment because of bad reactions, painful or unpleasant side effects, fear, etc. These negative emotional reactions may be masking any REAL therapeutic results, and the patient is doing their health a dis-service by not tuffing it out and listening to what the doctor says -- after all, s/he knows best, and any minor pain or discomfort is a small price to pay for the chance that it may help out somewhere down the line. Little baby!

Some people will quit the second protocol because -- well, you know it can't REALLY be doing any good, because not 100% of the people who tried it were immediately cured (improvement is not enough -- CURE people! Anything less means it's a sham!) Others will continue on the protocol because even tho' Science says that there's an infintessimal chance that it's doing anything it still makes them feel better... even if a reduction in numbness, tingling, L'ermets, hermits, dwarves, bad breath, etc. is totally imaginary. OK, the reduction in dwarves (magical creatures) was imaginary. The rest is real, because I haven't seen any hermits in a long, long time. Some people will quit because they will read about a doctor who says that it's not really the XYZ that is helping, but it's probably just that the person is taking better care of themselves, getting more rest, eating right and stuff -- which makes them THINK they feel better. You know, that MS stuff is all mental.

Sadly, the mortality of the second group is 100%, given enough time. The last known soldier from WWI just passed away, and he was 110 years old. I'll be reasonably safe in saying that even if you think that something may be helping, you're going to die (and within 100 years).

On the other hand, the mortality of the first group is improved somewhat -- remember, the goal of the medicine is NOT to stop or reverse MS... the best we can do it so slow it down or make it appear that it is arrested. You'll still have exacerbations and episodes, and if you try any of that wacky weed for pain, then YOU'LL be arrested, too.

OK, fun time is over. I don't advocate going it alone, totally ignoring either a doctor's advice or the disease itself. I don't disavow the possible benefits of weekly, multi-day, or daily shots, monthly infusions, PIC lines, intravenous steroids, or anything else that helps people. I DO advocate having a spiritual base -- it can't hurt, it might not "help", but it makes ME feel better. I do advocate watching diet and nutrition, because those have helped a lot of people. I do advocate keeping an open mind but a tight grip on your wallet and a cautious outlook -- I've never seen a miracle cure that came in a bottle for $7.99 (except maybe Clairol Sahara (Light Blonde #2 -- because if you feel better about yourself, you ARE going to have more fun. Blonde or not). I've never seen anything happen instantaneously (except combustion) and I don't think I've seen anything happen over night. You don't get artereosclerosis after one cheese burger, and you won't get rid of it after a good night's rest... it takes a while to grow watermelon from seed, and that's the same way my body heals (er, reference to care over time, not compost, soil, water, and sunshine). If you think that Vitamin D3 (or E or Omegas 3 & 6) may help, then research a bit... give it a try, but don't figure you'll be figure-skating the next day. If you think that NAG or NAC or ALA or ALC et al will help you remember the alphabet song, then I don't think it can hurt to learn more and give it a try if it's not contraindicated. If you think that C + B6 + B12 + the slope of the hypotenuse is not just good algebra but good self care, I can't disagree.


Me? I'm not giving up on miracles... I'm just not waiting on them -- in case they get here after I'm gone. I encourage all my loved ones to do the same.

There are so many things out there... so many different things which work for so many different people. If the first girl you go out with winds up liking somebody else, you don't turn off relationships forever--- you would just wind up spending your money on tech toys and still be lonely.

I've gone on long enough... I hear calling in the distance so the keepers may have found me. Don't give up, fight the good fight, and cheer when anybody wins.

M out.

Damn, I do go on. Pardon any spelling or grammar errors. I'll try to do the same for you. ;-)
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Re: That nagging feeling...

Postby Lyon » Mon Jan 21, 2008 8:41 pm

mvisconte wrote:I do advocate keeping an open mind but a tight grip on your wallet and a cautious outlook -- I've never seen a miracle cure that came in a bottle for $7.99
Isn't that exactly why mangostein juice costs $35.00 a bottle? If it's that expensive it has to be effective....doesn't it? :lol:

Bob
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Updates?

Postby mvisconte » Thu Jan 31, 2008 4:04 pm

Jim,

Any updates? Is the new schedule working out? Any new benefits/plateaus/symptoms?

?

M.
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Postby CureOrBust » Sat Feb 16, 2008 5:00 pm

CureOrBust wrote:If I had to go one side or the other, I would say yes, maybe...
I am now leaning to the probably, definitely, maybe, not....

I have stopped taking the NAG, after I forgot to take it one day, and did better in my exercise that day (16 minutes instead of 15). It was never a definitely for me as it is for Jim_P. I will probably give it another go later.
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Re: Getting better too quickly... is it a bad thing?

Postby zjac020 » Sun Sep 01, 2013 4:18 pm

Hi all,

I know it has been a while since this post (5 years), but as someone who recently (May/June) has become a member of the "clinically isolated case of RRMS", and with very probable prospects of being diagnosed with RRMS "soon", im doing everything posible to delay the onset of the next relapse or lesion development.

Can anyone provide an update on the use of this supplement NAG?

Thanks again,
zjac
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