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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.

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Wow Firefly, I am soooooo glad you have found something that works for you. I will definitely run this by my son's Environmental Doctor and Dan Doctor - maybe it will work for us too. Thanks so much for sharing with all of us, please keep us posted!

Giselle

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I posted my story on BrainTalk TS forum too, but they threw it out and shut me out of the site, too! I wonder why?

 

Firefly

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Probably because they thought you were trying to sell the product. I think that if you're not you might asked to be reinstated.

Giselle

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Hi Firefly, and welcome to Latitudes. I took a brief look into your posting and saw this on the internet:

 

"Carnosine (please don't confuse it with Carnitine) is a natural amino-acid that has been known about for decades. But it is only through recent Australian and British clinical and laboratory studies that the benefits of carnosine have become better known.

 

Carnosine has a number of interesting actions, it is a potent anti-oxidant, it helps to chelate ionic metals (i.e. flush toxins from the body)"...

 

So what is working for you may be a natural chelater. I also noticed two other substances that were listed in your product:alpha lipoid acid, acetyl carnitine.

Both of these substances are used by DAN doctors.

 

Thank you for your posting. I found it very informative and will look into Carnosine myself as a long term solution for my son and perhaps something I could use to stay healthy. Currently I have NDF-Plus lined up for my son but had to discontinue it due to gut issues. Using NDF-Plus myself however as I get my remaining mercury silver fillings removed. Once again thank you for your honest posting.

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So what is working for you may be a natural chelater. I

9106[/snapback]

 

Andy:

 

You may be right that; it may be the chelating action of carnosine. However, I don't think it is alpha lipoic acid plus acetyl carnitine. When I have run out of Carnosine plus, I have simply used three 500mg of Carnosine (single ingredient) per day with the same results on my TS. But, make no mistake, alpha lipoic acid plus acetyl carnitine has a strong anti-aging and subjective well-being effect.

 

I also take a whole bunch of other supplements, primarily anti-inflammatory and anti-allergic substances such as curcumin, rosemarinic acid, cordyceps sinensis, etc. I have found that any allergenic stimuli worsen the symptoms drastically (not so much after carnosine) -- particularly smelly chemicals and perfumes, certain foods (cheese, unboiled milk), synthetic carpets in contact with bare skin, etc. The response, in my case, has always been in the form of bronchospasm followed by tics, especially vocal ones. Knowing and avoiding allergens can reduce the incidence and intensity of the problems significantly.

 

Regarding heavy metal toxicity, I am sure you are aware that cilantro is an excellent remover of mercury from the body.

 

Regards,

Firefly.

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Giselle:

 

I am not trying to sell anything. The extra dose of enthusiasm you may note in my post is understandable when you view that a person who has had TS for 50 years encounters a remedy that wipes out 95% of his symptoms!

 

I am unable to contact the moderators of the TS forum on BrainTalk, because I am no more a member. You could, if you will, post a message there pointing to my post here. My only reason for posting my story is that there may be some young person whose life may be changed as a result of what I have stumbled upon.

 

Thank you,

Firefly.

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No, I could tell from your post that you weren't selling anything - just a believer, and I'm soooo glad you were able to post here - as you say, it might possibly help people. I'm going to ask Brain Talk to reconsider you posting. Watch me get cut off too! :D Were you under the same name?

Thanks again,

Giselle

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...........  Watch me get cut off too! :D  Were you under the same name?

Thanks again,

Giselle

9109[/snapback]

 

Yes, the same name.

You don't have to ask them to repost my entry. Simply post a message that there is someone detailing his experience with Carnosine on Latitudes. That way, you won't endanger your membership!

 

FireFly.

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Fireflyway, I have no allergies or medical issues that I know of. However, I have noticed that for the last 20 years or so that I can not handle perfumes or perfumed products myself as well. I do not know what they put into them now but I get headaches and my sinus hurt. I hope that you continue to post here. You seem to have alot to share and you share it in a positive manner.

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Hi FireFly....I am not a moderator...... but been here a while ^_^ and so I feel I can say with confidence that you havent violated any rules here. The only time a link wouldnt be approved of is if you were trying to sell something...ie profit by it, or if it led to an inappropriate site.

 

I have been reading your posts re the carnosine with interest as it is something I have heard before....thanks for updating us all here on your progress.

:)

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Hi, ^_^

Do you take enzymes with your vits and with the carnosine?

Thanks,

Mustang Carole

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No I don't. The main group of supplements that I take (other than Carnosine) are anti-inflammatory substances, particularly for the respiratory system. As I have already explained, in my case, the tics are always accompanied by (even preceded by) short and shallow breathing, bronchospasm, and a feeling of suffocation in the brain. So I take Grapeseed extract, rosemarinic acid, quercetin (plus Vit C), Cordyceps Sinensis, curcumin, etc. The other group of supplements I take consists of Mg, Zn, and Taurine.

 

Firefly.

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