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FireFlysWay

Carnosine, the miracle remedy (at least for me)

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Please understand that  I, having had TS for half a century, would be the last person to raise false hopes in the hearts of  TS families. I hope Carnosine works for you, but it may not. Having said that, here’s my experience…..

 

I am male, 52 years old. I have had TS since I can remember. Over the course of my life, the symptoms may have changed, but the intensity, for the most part, has not. I would put it at 7 on a scale of 1 to 10. Mainly vocal and motor (face, hands) tics, and echolalia. No coprolalia.

 

As you might expect, I went through the usual “allopathic” treatment (haloperidol et al.) in the 1970s. Also,  alternative treatments such as supplements, self-hypnosis, breath control, hypo-allergenic lifestyle, etc., etc. Above all, I have been a keen student of myself, observing and developing insights into my body that no doctor can do. Also, I have educated myself on the science and medicine of the syndrome. The various approaches have been helpful to differing degrees which I can discuss separately if there is an interest.

 

To Carnosine….  I have been interested in alternative, eastern, and orthomolecular medicine for a long time and have followed the developments keenly. Late in November 2004, I read about Carnosine’s pharmacological actions and how in some cases of autism, the results have been dramatic. All I knew about TS from inside my body suddenly clicked into place. I can talk about it later if there is an interest, but briefly: Carnosine protects neurons from glutamate-induced and/or hypoxia-caused, glycation-mediated, toxicity and cell death. All my life I have witnessed an attack of tics accompanied by cessation of  breathing, bronchospasm, and resulting feeling of hypoxia in my brain. I recorded this observation in my 20s! I have always realized what was happening in my brain during a severe episode was akin to a fish out of water, thrashing about  in its death throes.

 

To make a long story short, I ordered Carnosine Plus from SwansonVitamins.com (containing Carnosine, alpha lipoid acid, acetyl carnitine, biotin, nettle extract). I took 3 capsules one night in early December 2004. I woke up the next morning feeling completely transformed…… and I have stayed so for the last 8 months. I am 95% tic-free (except under environmental or psychological stress such as high humidity, heat, dry/windy cold, strong emotions --- when I am only about 75% tic-free). More than the tics, more than anything else, it is the feeling inside my brain that is remarkable; the permanent quiver I have had forever has ceased. It is quiet and cool in there, no random firing of neurons. I am sure persons with TS will know exactly what I mean. I visited my mother this past March; I never mentioned Carnosine to her. She remarked on her own that 98% of my tics had vanished. Even more importantly, I don’t blow up (in the face of day-to-day crises) anymore. The volcano seems to have been quenched (while I am taking Carnosine, that is).

 

In April, my wife mentioned Carnosine to her friend who has a 40ish son with TS. He bought his son a bottle of Carnosine. He has reported back that the tics are much milder, and the person is much happier and has suddenly become more sociable. This is hearsay, I am simply passing it along.

 

How do I know it is Carnosine and not the other ingredients? I take one dose of Carnosine Plus (500 mg) and two doses of Carnosine 500 mg capsules (for a total of 1.5 g per day). And it is not a “cure;” go off the supplement for 2 days, and the tics are back again.

 

Here, then, are some bits of info about Carnosine:

1. Carnosine is a dipeptide made of two amino acids, histidine and alanine. It occurs naturally in meat, but in small quantities. The body metabolizes carnosine into its components, so an adult dose of at least 1000 to 1500 mg is necessary to stay ahead of this decompositional process and have adequate Carnosine in the system. I don’t know what the minimum effective daily dose for a child might be (500 mg is worth a try?). You can take it with or without food., all in one dose or in 2-3 divided doses.

 

2. Carnosine is very safe. It would take 200,000 - 400,000 mg (based on body weight) to get Carnosine toxicity.

 

3. Carnosine has been found to have a dramatic effect in some cases of autism. It has also been tried in cases of intractable childhood epilepsy (due to its neuroprotective effects). In addition, it is useful in case of PDD, ADD, ADHD, and apraxia. Carn-Aware is a pediactric formulation with 200mg Carnosine, Zinc, and Vit E. (carn-aware.com)

 

4. Carnosine is an anti-aging supplement, owing to its ability to prevent pathological glycation. Basically, aging is a sort of slow cooking within the body. The amino group of a protein and the carbonyl group of a sugar or fat combine to form toxic products which promote the production of  free radicals, and damage the DNA. Amino-carbonyl reaction is the same reaction which give the golden brown color and great aroma to baked goods, French fires, grilled meat, etc.! Carnosine inhibits this process. Carnosine eye drops can arrest and even reverse cataract development in the elderly. In summary, Carnosine is a safe and effective supplement for the general population.

 

That’s it for now. I hope you’ll try Carnosine; I hope you’ll experience the same level of benefit that I did. And I hope you’ll share your experience here, so that we may get a larger picture.

 

I will try to post this in as many TS forums as I can.

 

With much good wishes,

Firefly.

9101[/snapback]

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Hi Firefly. I'm very interested in trying carnosine. I'm 31 years old, had Tourette's since I was 14. Diagnosed a couple years ago (by myself and then confirmed by a neurologist). I have been avoiding foods with high glutamate levels for awhile believing that tics are your brain's way of trying to clear glutamate and aspartate out of itself. This comes from a theory of epilepsy which I think is very similar to Tourette's. Both are ways the body is trying to heal itself. I got this theory from dogtorj.com a veterinarian and celiac who has done massive research. It's a lot of info, if you go to his site. The G.A.R.D. (Glutamate Aspartate Restricted Diet) is where he talks alot about this as well as his Epilepsy page. Though you may have to read "The Answer" to get the underlying theories. It's all fascinating to me. I have not tried this diet for long enough to tell if it will help the tics (I have eye tics mostly with chin jutting occassionally and possibly a vocal tic of clearing my throat though that may be caused by smoking) but I do feel a hundred percent better already (been about a month). Others here may be interested in this site too. Sounds like the carnosine may work on similar lines. Perhaps avoiding the glutamate and aspartate foods would take you that last 5% or make it so that you don't need the carnosine. Though I hear it's very beneficial for rejuvinating cells (the anti-aging aspect) and as an antioxidant. But it's very expensive. I will try it as soon as I can free up the money (most of which goes to organic food :) )

. Have you done much research on the underlying science of why carnosine works for you? I'd love to hear more about that if you have any info. I already know about the glutamate connection (proposed by dogtorj) but have not heard of hypoxia. I'll look that up. I don't know if suffer from bronchospasms or not. I always have shallow breathing and my tics are pretty constant but mild. Aggravated by the usual (stress, caffeine, etc...). Love to hear back from you.

 

Jason

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................ I have been avoiding foods with high glutamate levels for awhile believing that tics are your brain's way of trying to clear glutamate and aspartate out of itself. This comes from a theory of epilepsy which I think is very similar to Tourette's.

.... Jason

9185[/snapback]

 

Jason:

 

Thank you for the very interesting website link! I will certainly check it out.

 

I would agree with you that many neurological disorders (epilepsy, TS, autism,...) are different expressions of similar patterns of neurolopathology. While I am no medical expert, I have (as you probably do) an insider's insight into my brain. When I try to educate myself on the neuroscience, something clicks inside!

As you know, glutamate is one of the excitatory neurotransmitters, which if not adequately captured by receptor sites, can cause toxicity to neurons, inducing them to commit suicide (apoptosis). Apparently, Carnosine can protect the neurons (by simulating the receptor sites?).

A related observation, whenever I eat at a Chinese restaurant that uses MSG (mono sodium glutamate), the symptoms get worse! Of course, I am also bothered by cold&dry weather, mold, strong perfumes, etc. So, it must be the glutamate in the brain, not just the diet.

 

From your description, you seem to have a relatively mild case of TS (good for you!). I don't know if the shallow breathing is characteristic of all TS individuals, but is unmistakable in my case, especially in the throes of an episode. If I take a deep breath (in fact, several) I find that the tics quieten down. This is a problem because the lungs won't cooperate but go into a spasm. In fact, I have found some of the yogic breath control techniques (pranayama) to be useful as tic management tools that can moderate the intensity of an episode. These are typically useful for adults (not suitable for little children); so I haven't discussed them here (there are very few TS adults on such forums, I guess).

 

......Perhaps avoiding the glutamate and aspartate foods would take you that last 5% or make it so that you don't need the carnosine.

Carnosine IS what is providing the 95%, so I'd still need it. Also, its anti-aging effects are palpable. Yes, it is expensive (unfortunately). But, you can get it for under $20 (60 cap, 500 mg each). That is $1 per day, not too bad.

 

Good Luck and keep us posted,

Firefly.

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Yeah, I guess you're right. You would still need the carnosine. But if you reduced the amount of dietary glutamate maybe the 5% would diminish. Worth a try. I bought some carnosine over the weekend and have been taking 500 mg (Source Naturals). with meal 3 times a day. It does seem to be helping. I'll have to give is some time before I can tell. It's hard for me to keep tabs on it because I always twitch when I think about twitching (muscle memory perhaps) so I have to give it a period of time before I can reflect enough to tell if it has been happening less. Since it's mostly just my eye twitch that happens regular (and possibly throat clearing) it's not as obvious as a hole head movement or barking for instance. My chin jutting is something that I'm very good at controlling. I think because it's more conspicious. Most of the time it just feels very tense and from time to time I stretch it out by moving my chin up. So it's all kind of subtle and hard to gauge. I'll let you know how it goes.

 

In your initial post, you said you could go more into the biology of why carnosine is helping. I'd be interested in hearing more on that. I'll do a search myself on glutamate and apoptosis and see what I can dig up. Thanks again for the info.

 

Jason

 

................ I have been avoiding foods with high glutamate levels for awhile believing that tics are your brain's way of trying to clear glutamate and aspartate out of itself. This comes from a theory of epilepsy which I think is very similar to Tourette's.

.... Jason

9185[/snapback]

 

Jason:

 

Thank you for the very interesting website link! I will certainly check it out.

 

I would agree with you that many neurological disorders (epilepsy, TS, autism,...) are different expressions of similar patterns of neurolopathology. While I am no medical expert, I have (as you probably do) an insider's insight into my brain. When I try to educate myself on the neuroscience, something clicks inside!

As you know, glutamate is one of the excitatory neurotransmitters, which if not adequately captured by receptor sites, can cause toxicity to neurons, inducing them to commit suicide (apoptosis). Apparently, Carnosine can protect the neurons (by simulating the receptor sites?).

A related observation, whenever I eat at a Chinese restaurant that uses MSG (mono sodium glutamate), the symptoms get worse! Of course, I am also bothered by cold&dry weather, mold, strong perfumes, etc. So, it must be the glutamate in the brain, not just the diet.

 

From your description, you seem to have a relatively mild case of TS (good for you!). I don't know if the shallow breathing is characteristic of all TS individuals, but is unmistakable in my case, especially in the throes of an episode. If I take a deep breath (in fact, several) I find that the tics quieten down. This is a problem because the lungs won't cooperate but go into a spasm. In fact, I have found some of the yogic breath control techniques (pranayama) to be useful as tic management tools that can moderate the intensity of an episode. These are typically useful for adults (not suitable for little children); so I haven't discussed them here (there are very few TS adults on such forums, I guess).

 

......Perhaps avoiding the glutamate and aspartate foods would take you that last 5% or make it so that you don't need the carnosine.

Carnosine IS what is providing the 95%, so I'd still need it. Also, its anti-aging effects are palpable. Yes, it is expensive (unfortunately). But, you can get it for under $20 (60 cap, 500 mg each). That is $1 per day, not too bad.

 

Good Luck and keep us posted,

Firefly.

9187[/snapback]

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Jason:

 

I am glad that you have started to take Carnosine and find it helpful. In a week or two, you should know the degree of benefit you are getting from it. I hope you'll be as lucky with Carnosine as I have been.

 

The best scientific article on the mechanism of Carnosine is

http://www.protein.bio.msu.ru/biokhimiya/c...l/65070998.html

A paragraph you'll certainly appreciate is

"Uncontrolled increase in excitotoxic compounds (glutamate, aspartate) in the interneuronal medium is an important pathogenic factor of development of ischemic injury of the brain. These excitotoxic compounds induce sustained activation of the corresponding receptors providing for pleiotropic effects of their activation in the cell, thus altering intracellular homeostasis. Activation of glutamate receptors by kainate (KA) or N-methyl-D-aspartate (NMDA) is associated with Ca-dependent formation of reactive oxygen species inducing massive cell death. Pretreatment of neuronal suspension with carnosine protects the cells from KA- and NMDA-dependent injury. Suppression of glutamate receptor-dependent toxicity was dose-dependent, and IC50 was 0.75 mM; this value is similar to the physiological concentrations of carnosine in the vertebrate brain [37]."

 

The Russians have been at the forefront of Carnosine research. My everlasting gratitude to them.

 

Regards,

Firefly.

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Please understand that  I, having had TS for half a century, would be the last person to raise false hopes in the hearts of  TS families. I hope Carnosine works for you, but it may not. Having said that, here’s my experience…..

 

I am male, 52 years old. I have had TS since I can remember. Over the course of my life, the symptoms may have changed, but the intensity, for the most part, has not. I would put it at 7 on a scale of 1 to 10. Mainly vocal and motor (face, hands) tics, and echolalia. No coprolalia.

 

As you might expect, I went through the usual “allopathic” treatment (haloperidol et al.) in the 1970s. Also,  alternative treatments such as supplements, self-hypnosis, breath control, hypo-allergenic lifestyle, etc., etc. Above all, I have been a keen student of myself, observing and developing insights into my body that no doctor can do. Also, I have educated myself on the science and medicine of the syndrome. The various approaches have been helpful to differing degrees which I can discuss separately if there is an interest.

 

To Carnosine….  I have been interested in alternative, eastern, and orthomolecular medicine for a long time and have followed the developments keenly. Late in November 2004, I read about Carnosine’s pharmacological actions and how in some cases of autism, the results have been dramatic. All I knew about TS from inside my body suddenly clicked into place. I can talk about it later if there is an interest, but briefly: Carnosine protects neurons from glutamate-induced and/or hypoxia-caused, glycation-mediated, toxicity and cell death. All my life I have witnessed an attack of tics accompanied by cessation of  breathing, bronchospasm, and resulting feeling of hypoxia in my brain. I recorded this observation in my 20s! I have always realized what was happening in my brain during a severe episode was akin to a fish out of water, thrashing about  in its death throes.

 

To make a long story short, I ordered Carnosine Plus from SwansonVitamins.com (containing Carnosine, alpha lipoid acid, acetyl carnitine, biotin, nettle extract). I took 3 capsules one night in early December 2004. I woke up the next morning feeling completely transformed…… and I have stayed so for the last 8 months. I am 95% tic-free (except under environmental or psychological stress such as high humidity, heat, dry/windy cold, strong emotions --- when I am only about 75% tic-free). More than the tics, more than anything else, it is the feeling inside my brain that is remarkable; the permanent quiver I have had forever has ceased. It is quiet and cool in there, no random firing of neurons. I am sure persons with TS will know exactly what I mean. I visited my mother this past March; I never mentioned Carnosine to her. She remarked on her own that 98% of my tics had vanished. Even more importantly, I don’t blow up (in the face of day-to-day crises) anymore. The volcano seems to have been quenched (while I am taking Carnosine, that is).

 

In April, my wife mentioned Carnosine to her friend who has a 40ish son with TS. He bought his son a bottle of Carnosine. He has reported back that the tics are much milder, and the person is much happier and has suddenly become more sociable. This is hearsay, I am simply passing it along.

 

How do I know it is Carnosine and not the other ingredients? I take one dose of Carnosine Plus (500 mg) and two doses of Carnosine 500 mg capsules (for a total of 1.5 g per day). And it is not a “cure;” go off the supplement for 2 days, and the tics are back again.

 

Here, then, are some bits of info about Carnosine:

1. Carnosine is a dipeptide made of two amino acids, histidine and alanine. It occurs naturally in meat, but in small quantities. The body metabolizes carnosine into its components, so an adult dose of at least 1000 to 1500 mg is necessary to stay ahead of this decompositional process and have adequate Carnosine in the system. I don’t know what the minimum effective daily dose for a child might be (500 mg is worth a try?). You can take it with or without food., all in one dose or in 2-3 divided doses.

 

2. Carnosine is very safe. It would take 200,000 - 400,000 mg (based on body weight) to get Carnosine toxicity.

 

3. Carnosine has been found to have a dramatic effect in some cases of autism. It has also been tried in cases of intractable childhood epilepsy (due to its neuroprotective effects). In addition, it is useful in case of PDD, ADD, ADHD, and apraxia. Carn-Aware is a pediactric formulation with 200mg Carnosine, Zinc, and Vit E. (carn-aware.com)

 

4. Carnosine is an anti-aging supplement, owing to its ability to prevent pathological glycation. Basically, aging is a sort of slow cooking within the body. The amino group of a protein and the carbonyl group of a sugar or fat combine to form toxic products which promote the production of  free radicals, and damage the DNA. Amino-carbonyl reaction is the same reaction which give the golden brown color and great aroma to baked goods, French fires, grilled meat, etc.! Carnosine inhibits this process. Carnosine eye drops can arrest and even reverse cataract development in the elderly. In summary, Carnosine is a safe and effective supplement for the general population.

 

That’s it for now. I hope you’ll try Carnosine; I hope you’ll experience the same level of benefit that I did. And I hope you’ll share your experience here, so that we may get a larger picture.

 

I will try to post this in as many TS forums as I can.

 

With much good wishes,

Firefly.

9101[/snapback]

email me at nursepatti1@aol.com for information how and where to get canosine  My grandson is 12 and started ticking 7 months ago. Head jerking and stretching his eyes. And turning them. Please help i live in tampa. 813-926-7537

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email me at nursepatti1@aol.com for information how and where to get canosine   My grandson is 12 and started ticking 7 months ago. Head jerking and stretching his eyes. And turning them. Please help i live in tampa. 813-926-7537

 

9287[/snapback]

 

nursepatti1,

 

While Carnosine is a natural compound and is considered very safe, I'd not administer any therapeutic supplement to a 12-year old without consulting a doctor. There is the issue of appropriate dosage. If you are a nurse (as your handle suggests), you probably are very familiar with safety issues; however, it would still be a good idea to consult a physician who is open to alternative therapies.

 

Carnosine is available at most health food stores that stock supplements. Online, two good sources are www.lef.org and www.swansonvitamins.com

 

Good Luck and keep us posted,

 

Firefly.

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Hi Firefly - when you say expensive you aren't kidding. Just bought some today after seeing my son's DAN doctor who thought it was a great idea. He just had his first capsule a few minutes ago. I will keep you posted!

Giselle

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Giselle,

 

Thanks for posting about this. I will be very interested to hear what results you see. Hope your little creative one is doing well! Sounds like his flair settled quickly. So happy to read that.

 

Kim

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Giselle:

I hope Carnosine works for your child.

I know the darned thing is expensive, but the quietness inside my brain makes it worth the price! I hope you didn't buy yours at a local healthfood store (where I have seen exorbitant prices). LEF or Swanson seem best, at about $1 per gram.

Waiting to hear your update,

Firefly.

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Hi Firefly - I bought Jarrow's L-carnosine. He takes Thorne for almost everything else and when I asked them if they make carnosine they told me they don't and have no plans to do so. Other of Jarrow's products are fine for him (except the vegetarian capsules as they have maltodextrin in them - he's allergic to corn) but this one uses a gelatin capsule so is fine. The other brand he does well with is Solray - very pure. Anyway it cost $49.99 for 90 capsules 500mg each. He's taking 2 a day. It's still not as expensive as his Calm PRT for his neurotranmitters which is $100 for a month - yikes! But super worth it! He is doing amazingly well already with only a few finger crunches a day. I decided to try the L-carnosine to try to get him in the black again. He has no buffer and a late night or the sniffles really take their toll on him. It's too early to tell but he usually reacts really quickly if something doesn't agree with him and we saw no signs yesterday or today. One thing he did say made me wonder though - he said he felt really mellow this morning. I thought "oh goodness, what does that mean?" I don't want him all dreamy at school - and he said it was like he felt really calm. Maybe it was the L-c? He tends to be on the anxious side so being calm can't be bad - maybe I should take the whole jar! :huh:

 

Giselle

P.S. I thought I'd posted the link to this thread over at Brain Talk but when I went to go look for it couldn't find it - must have not hit the submit button. Anyway, I redid it so it's there now.

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Hi Giselle:

 

I hope your son is continuing to do well on Carnosine.

I think "mellow" is good. My experience is that Carnosine makes me calm but very alert (not dreamy at all). My subjective expressions of the feeling are "there is a deep quietness," "the volcano in my brain has been quenched," or "the quiver inside has subsided."

I'd be interested to know your son's subjective feelings and your objective observations of Carnosine's effect.

 

Good Luck again,

Firefly.

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I am a believer in it. He is so much calmer but as you said in an alert way. I think the anti-oxidant quality is helping him too. He seems like he has more energy - he's not waking up as tired as he usually does. He's also not sleeping as long. He's almost 8 and he has needed 12-13 hours religiously! It is hard to facilitate this as there is homework, bath, story - but we do. I feel like a race horse in the evening. He gets up at 7 so must be in bed by 6. Throw in a chiropractic appointment and it's just this huge race. :) Well since he's been taking this he has been waking up earlier - at first it was 15 minutes but now its at a 1/2 hour. That is huge for us! We can get in extra story time in the morning - a must as he's in second grade and has to read to us which takes a while. So if nothing else that has been great! It's all coming together so nicely!

 

Thanks so much,

Giselle

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