EP is a community where members connect through shared life experiences-- like MS--and so much more. You are not defined by any one thing, so be your true self and find others just like you at
Experience Project.
Joined: Jul 28, 2005 Posts: 1331 Location: Sydney, Australia
Posted: Tue Jul 11, 2006 4:26 am Post subject:
phew, your right. It stinks!
Mine are obviously well sealed capsules. However, if i take a deep wiff inside the bottle, they do have a strong smell.
One thing I have learnt, is to make sure to wash them down well. The capsules i have are filled with powder (NAC). If i dont wash it down properly, they have been known to get caught at what feels like, just before my stomach, and they BURN. It feels like I have release some powdered acid there.
Joined: Feb 02, 2004 Posts: 864 Location: California, USA
Posted: Tue Jul 11, 2006 11:03 am Post subject:
Thanks CoB Good advice... and very reassuring as I was nervous to keep taking these. _________________ Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
Joined: Jul 28, 2005 Posts: 1331 Location: Sydney, Australia
Posted: Wed Jul 12, 2006 3:46 am Post subject:
can u tell us your reason for taking them? (I can understand your position if u chose to not answer this)
What dose have you put yourself on? and did you undergo any reactions? I havent myself (at all, at even double the dose of others ie 4800mg/day), but some have talked of some pretty distinctive reactions.
Joined: Jun 18, 2004 Posts: 1483 Location: Bedfordshire UK
Posted: Wed Jul 12, 2006 12:05 pm Post subject:
Hi Arron, yes, as CureO says, wash them down well with water! I have tablets rather than capsules and they do rather smell of the sulphur constituent, hence the thought that it is similar to garlic, but not really. One of the less pleasurable experiences I put myself through recently was accidentally biting one whilst thinking about something else. I must have thought it was a chewable CoQ-10, which tastes of orange. This was absolutely disgusting and lingered for ages, no matter how much I drank.
Sarah _________________ An Itinerary in Light and Shadow
Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still slowly improving with no exacerbation since starting. EDSS was 7, now 2 or often less.
Joined: Feb 02, 2004 Posts: 864 Location: California, USA
Posted: Wed Jul 12, 2006 12:11 pm Post subject:
Hi CoB, thanks for understanding, as you know I prefer to keep myself out of all treatment conversations as I don't want to associate This is MS with anything I personally do. I guess I could say that I'm trying it as a personal experiment to help counter the oxidative stress of inflammation for a non-MS issue.
As you well know, PubMed is *replete* with studies showing NAC, as precursor for glutathione, being beneficial for a host of inflammatory ailments which all seemed to be linked at some as-yet unknown level e.g., MS<->IBD<->RA. I believe it is just one more angle of attack.
I have not seen any results either way yet-- I'm taking 1.5g per day, as well as 400mg of ALA. If anything, the inflammation has gotten worse since starting my experiment, but obviously no way to really tell if one thing leads to the other just yet. Interestingly enough, many of the studies used megadoses of NAC, on the order of gram(s) per kg of animal weight, so I wonder if we're even making a drop in the bucket. Perhaps putting a toe in the water
How long have you been taking 4.8g/day? What reactions have others discussed? _________________ Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
I'm totally unfamiliar with trials and studies and the protocol for how they are conducted. But the beginning of this thread cited a study that was about a year ago. Is there a way to find out how the study is going or if there are results? napay _________________ My Starting Point
Understanding MS 101: Doctor Talk and People Talk
Joined: Jun 29, 2006 Posts: 11 Location: South Florida
Posted: Wed Jul 12, 2006 4:05 pm Post subject:
I am not sure if this has been brought up, but NAC may also be an excitotoxin. As the acetylated version of the sulfur amino acid, l-Cysteine it may share many of the same properties. I got the following information off a reputable supplement/nutrition website that has a lot of information about various supplements. You can register for free and access all of their information. http://www.netriceuticals.com
Quote:
Cautions
L-Cysteine is converted into toxic L-Cystine without Vitamin C. Vitamin C should always be taken with NAC.
L-Cysteine is also an excitotoxin in the brain which can seriously damage brain cells. In fact, it is thought by some that L-Cysteine is the culprit in neuromuscular diseases such as ALS, MS and Alzheimer's. People with those conditions either metabolize the amino acid incorrectly or have it catalyzed by such metals as Aluminum. L-Cysteine excitotoxicity is completely blocked by Zinc which should also always be taken with it.
I take NAC as well, but I take it with a multivitamin that has Zinc in it.
Joined: Feb 10, 2006 Posts: 394 Location: Northern Virginia
Posted: Mon Aug 20, 2007 2:41 pm Post subject: Completed?
ljm wrote:
Tracy,
I was also interested in NAC. I had read a news release showing clinical trial of NAC in conjunction with Copaxone at Jewish General Hospital in Montreal (http://www.sciencesdelavie-montreal.com/sciencesdelavie/site/fiche/17639)
I did phone the lead investigator, Dr. Schipper, who is a neurologist as well as being listed in release as a specialist in antioxidants. Schipper was sort of in a rush and called me back on my cell when I didn't have notes at hand. So read this with caution.
Schipper said he had reviewed a range of antioxidants to use in his studies and picked NAC because
(1) it had already shown some MS promise in the mouse studies
(2) it is one of few antioxidants that can be shown to cross the BBB
(3) it had already been shown effective in some neurological conditions (a rare form of childhood epilepsy, I couldn't get down name) and
(4) the side effects are negligible
He said alpha lipoic acid had been on his short list but it was lacking the mouse studies and there was some question in his mind whether it crosses the BBB.
He said his study is using a Copaxone/NAC combination because he went the rounds of several drug companies and Teva showed interest and funded the trial.
He originally wanted to do a trial testing NAC/Alone as well as NAC/Copaxone, but it would take too many patients. He's hoping if this trial proves effective he can do a phase III that will determine impact of NAC on its own.
WIth respect to dosage, he is administering 5 g a day in 2 dosages of 2500 mg.
I asked if there was any possible interaction of NAC with other drugs, or possible effects of taking NAC with another antioxident such as alpha lipoic acid. He was not really clear on the answer to this, but pointed out, that if I was concerned one of the best natural sources of NAC is tomatoes (cooked, not raw) as well as pomegranate juice.
FYI I can get pure pomegranate juice at local grocery store and coincidentally had been drinking it regularly ever since having an incredible pomegranate martini at Christmas.
Also FYI I have started to add a 500 mg tablet of NAC to my supplements but I am would be concerned about going up to 2500 mg.
I'm anxious to hear if anyone else has any information or for example can tell me whether it would be better taking NAC with full-range amino acid supplement etc.
I'm also anxious to hear just how everyone handles all this disparate information. Do you just decide to pick a few therapies that don't seem to have much potential for collision and hope for the best? Why, for example, does someone decide to take NAC, and another decides to try Inosine or Statins?
LJM
Ok, the link on the clinical trials site says the study has been completed. How can I find out the results?
Joined: Aug 22, 2008 Posts: 23 Location: London,UK
Posted: Sun Sep 14, 2008 5:13 pm Post subject:
NAPAY,
You replied recently in some supplements questions i posted (thanx for doing so), mentioning among other things that you got in contact with Dr. Schipper about his NAC trial and that he told you he had positive MRI results-which sounds very good.
Could you share any other information from your discussion with Dr. Schipper?Did he give a reason for not publishing the results of the study?
I did some research on NAC after your proposal and we will be adding it in my girlfriend's regimen.
Joined: Feb 10, 2006 Posts: 394 Location: Northern Virginia
Posted: Sun Sep 14, 2008 6:08 pm Post subject: Schipper
Waterbear,
It took me some internet searching to find him. I recall that he was with a hospital in Canada. I typed up everything he said. He seems busy, but seemed interested in the fact that I was interested in his study. I'm sure if you track him down he'll give you a minute of time. Have your questions ready.
Those who are taking NAC as part of the ABX protocol, such as us, will 1) applaud your research on NAC and 2) encourage you to understand that it’s not the total package. If you start NAC and get flu-like symptoms, you are a candidate for ABX therapy and may benefit from considering its benefits.
Yannis I give 2x600mg NAC per day to my wife along with inosine, silybum, carnitine, alpha lipoic acid, Q10 etc
It protects the liver among others (most MSers have abnormal liver enzymes), has antibacterial and neuroprotecting properties with almost no side effects at all so why not to try it?
No flu like symptoms in my wife the first week on NAC.
All times are GMT - 6 Hours Goto page Previous1, 2
Page 2 of 2
You cannot post new topics in this forum You cannot reply to topics in this forum You cannot edit your posts in this forum You cannot delete your posts in this forum You cannot vote in polls in this forum
We encourage you to also visit our Multiple Sclerosis story and support community on Experience Project.
Experience Project is a vast and powerful community where people connect anonymously through life experiences. It's made by the same people who built This is MS,
on the premise that no one life experience-- like having MS-- defines a person. It now covers over 2 million life stories. Find and share yours!
Forum FAQ
Search
Usergroups
Profile
Log in to check your private messages
Log in
Good advice... and very reassuring as I was nervous to keep taking these.
