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Carnosine, the miracle remedy (at least for me)


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Giselle:

 

I am so happy for you and your son.

 

Carnosine appears to stop the death of brain cells caused by excitotoxicity. Cells (all cells, not just neurons) live much longer and are able to divide more number of times when Carnosine is present. I have noticed the morning effect, too. Waking up not only earlier, but fresher.

 

Carnosine is present most in brain and muscles. The latter location is important for the natural development of muscles. It is my theory that an inherent deficiency of Carnosine is why many (most?) TS people are thin -- no matter how much they exercise. You'll be surprised by how much more muscle your son will naturally put on over the next year. And he will not tire as easily by physical activity.

 

Best wishes,

Firefly.

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Hi Firefly, wow, that would be great - he is super thin - he's as tall, if not taller than his classmates but only weighs 52 pounds. The boy who is closest to his height weighs 95lbs! Here in California the law is that you have to be 6 and weigh 60lbs to get out of the booster seat. At this rate he'll be 10 before he's out! Maybe not with the Carnosine :D I read somewhere else there was another explanation for their thinness. That when they are on the neurotransmitter blockers (the regular traditional medicine stuff) they get chubbier because what's being blocked also stops another cycle - I'm sorry not making much sense. I'll go look for that - but not tonight I've been burning the midnight oil too many nights in a row! :)

 

I'll look for that article and keep you posted on Hoyt's Carnosine progress!

Giselle

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Giselle:

 

Amazing! I'm sure if you were to conduct a survey of TSers, you'd find an overwhelming majority of them were grossly underweight as children (may be as adults, too). But I'm sure your child will hit that magic number soon and get out of the booster seat!

 

By the way, thanks for putting a link to this thread on BrainTalk. Hope the kapos over there don't throw it out! :)

 

Firefly.

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  • 1 month later...

Thought I would share this from another bd.

The poster who wrote to this gentlemen refers to him as Dr. Jon Pangborn. Here is his response to her question regarding the use of carnosine.

****************************************************************************************

 

I still have the same concerns about carnosine use as a supplement for autistics. I have spoken to Dr. Chez directly about it. I'm aware that it has helped many autistics, especially those with seizure conditions, and Dr. Chez confirms that the best responses he has seen are for seizure cases. I'm also aware of a number of disasters with its use - extreme hyperactivity, worsening of autistic traits, and week-to month periods of recovery after using carnosine for only one day.

 

Autistics are individuals who have considerable variability when it comes to biochemistry that's on the periphery of that which pertains directly to autism itself. Carnosine is not central to autism; it is on the periphery. Carnosine is a peptide composed of histidine (a conditionally essential amino acid) and beta-alanine (often a troublemaking amino acid). Some manufacturer claims that I've seen exhibit total ignorance when they say carnosine is histidine plus "alanine". Alanine is fine, beta-alanine is definitely not fine.

 

So, if you want to try carnosine as a nutritional option, do so with the knowledge that adverse effects can occur. I must continue to advise against its use by clinicians until certain analytical (lab) measurements are negative for contraindication. Analytical contraindications for carnosine use are: elevated carnosine and/or beta-alanine in blood/urine, and high taurine (wasting) in urine. A further contraindication would be worsening of the blood copper/zinc ratio with carnosine despite co-supplementation with zinc.

 

You may post this on the Internet.

 

Jon Pangborn

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Yikes to the upping of the copper to zinc ratio! My son has that already - but we are supplementing with L-carnosine after asking his DAN doctor who believes it is very effective - Hoyt is doing really well on it and I'm taking it too after seeing such focus and attention benefits in my son. But thanks for the heads up - so far his ratio hasn't risen but gone down from the P5P supplementation but should it I will know why. Thanks,

Giselle

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I would like to try Carnosine on my 12 yr old son. I know I should get a doctors approval, but I am a little discouraged with Doctors right now. The first visit to his regular pediatrician for a neurologist referral, I was told that it would take 2 months to get in with a Neuro. In the mean time, the Neuro his doc spoke with over the phone, gave us a prescription for a major anti-psychotic drug that has not been on the market long. The Neuro prescribed this without even seeing my son! Are they getting comission for handing out these drugs like they are Tylenol?!

 

Anyway, are any parents on here administering Carnosine to their children? Any progress?

 

By the way Firefly...I am very happy for you! It sounds like you deserve some peace. I watch my son everyday and my heart breaks for him. I find myself wanting to shame on the people that look at him when he is shouting from his vocal tics. I get angry and embaressed. And then I think what it must be like for him. I wish I could take his place. This is all still new to us, and we are still in the trial and error phase. Bless you!

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Kim,

Thanks for the cautionary note; we should always keep the possible risks in mind.

An indication that one has carnosineurea (i.e., carnosine excreted in urine) is that you may get a white spot on your finger nail. This has happened to me once or twice in the last year (I was taking 2 g per day). One can reduce the dosage if this occurs. Of course, the white spot, once it appears won't go away but will travel toward the fingertip (as the nail grows).

 

Giselle,

I am glad to note you are taking Carnosine, too. What has been your experience?

 

Mommaonamission,

Thank you for your kind words. Sorry about your son's ordeal. If you are chary of trying supplements, you may want to get him to learn some breath control techniques that may help him with the vocal tics. If there is a good Yoga teacher (not the current, fashionable types) who knows Pranayama (the yogic breath control), ask him/her to teach your son a technique called Ujjaayi.

Also, be very careful about perfumes, harsh smelling cleaning chemicals, etc., which can make the repiratory tract go into a spasm and induce vocal tics. I've found two essential oils really help relax the bronchospasm (which, in my experience, is what causes the vocal tics) --- Rosemary oil, and Lily of the valley. There is scientific research attesting to their lung spasm-relieving qualities. And, one of the components in Rosemary essential oil is -- are you ready for this? -- carnosic acid !!

 

Good Luck,

Firefly.

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Thank you Firefly. I was inspired by your post, and picked some Carnosine up at Wholefoods today. I'm going to talk to his Pediatrician about a safe dose. He is such and intelligent boy. He is in denial about his Tourettes. He doesn't want to be different. He makes straight A's consistantly and is an outstanding athlete. He is one of those kids who is just good at everything he tries. He has always been a leader in school, and I don't want his self esteem to plumit. He plays the trumpet and piano, and the funny thing is...he doesn't make a single sound while he is doing it. No nothing. Lately it seems like it is the only time he is at peace. I hope the kids will continue to accept him. I watched the HBO special and was amazed at how strong those kids were. I don't think I was ever that brave. Bless them. Thanks again.

 

Kim,

Thanks for the cautionary note; we should always keep the possible risks in mind.

An indication that one has carnosineurea (i.e., carnosine excreted in urine) is that you may get a white spot on your finger nail. This has happened to me once or twice in the last year (I was taking 2 g per day). One can reduce the dosage if this occurs. Of course, the white spot, once it appears won't go away but will travel toward the fingertip (as the nail grows).

 

Giselle,

I am glad to note you are taking Carnosine, too. What has been your experience?

 

Mommaonamission,

Thank you for your kind words. Sorry about your son's ordeal. If you are chary of trying supplements, you may want to get him to learn some breath control techniques that may help him with the vocal tics. If there is a good Yoga teacher (not the current, fashionable types) who knows Pranayama (the yogic breath control), ask him/her to teach your son a technique called Ujjaayi.

Also, be very careful about perfumes, harsh smelling cleaning chemicals, etc., which can make the repiratory tract go into a spasm and induce vocal tics. I've found two essential oils really help relax the bronchospasm (which, in my experience, is what causes the vocal tics) --- Rosemary oil, and Lily of the valley. There is scientific research attesting to their lung spasm-relieving qualities. And, one of the components in Rosemary essential oil is -- are you ready for this? -- carnosic acid !!

 

Good Luck,

Firefly.

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  • 2 weeks later...

Hi FireFlysWay,

I have been reading this forum for a long time. I have a 16 yr old son with a multiple motor tic disorder. He has had this since age 4. Started with shoulder shrugs off and on for two years and then at age 6 moved to head shaking and other motor tics. Within a couple of years that had gotten so bad that we tried different medications and finally ended up with Risperal. Last year they added Lexapro which helped enormously and were able to bring him down to a low dose of Risperal which we were very happy to do. Obviously our best scenario will be to get him totally off medications. He has been taking Bonnie Grimaldi vitamins since 2nd grade--(which I have kind of adapted to what works for my son and buy through the regular vitamin store, B50,an antioxidant, DHA, no flush niacin, calcium-magnesium, and taurine. They helped him alot with his disposition, but didn't do anything for the tics. We also had taken him to a couple of allergists who did tests and said he was allergic to several things. Both places used the drops under the tongue. We noticed no change and discontinued them, we didn't feel like the allergists had every dealt with any "tic" children and didn't have much faith in them. So this brings me to the Carnosine issue. I am seriously thinking of using it for my son to see if we see any benefit. After reading the posts here and seeing some success stories I am hoping my son will be one of them also. I was going to get the L-Carnosine Jarrow formula that mommaonamission listed that she uses. My question is that will it be ok for him to take when he is on the Risperdal and Lexapro? It doesn't list anywhere where I saw when I researched it that there were any contraindications for it. Would I give him 500mg in the morning and 500mg in the evening? Thanks for your help, anne

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My question is that will it be ok for him to take when he is on the Risperdal and Lexapro? It doesn't list anywhere where I saw when I researched it that there were any contraindications for it. Would I give him 500mg in the morning and 500mg in the evening? Thanks for your help, anne

Hi Anne:

I am not qualified to make a statement on drug interactions with prescription medications. However, I know that Carnosine occurs naturally in the body and in meat products (if you eat 2 lbs of meat, you'll get about 500 mg of Carnosine, I think).

If your son is 120 lb or over, you should consider giving him 1.5 g of Carnosine per day. I take 1 g in the morning and 0.5 g at bed time. The body is constantly metabolising Carnosine into component amino acids, so it is important to take enough to stay ahead of this process.

I hope your son has good results with Carnosine.

Firefly.

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Hello Anne

I would honestly recommend that you FIRST discuss this with the prescribing physician. Although there are no documented adverse interactions, this really is only because there is yet very little research done on carnosine.

I know it is very beneficial for tics, as my son found when he was put on a low dose zinc-carnosine (Natural Lining)supplement to help with the GIT inflammation that he had from a Candida yeast infection. The carnosine is really good stuff, but you do need to be cautious when dealing with strong drugs like Risperidal and Lexapro.

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Hi Firefly,

I would like to try Carnosine for my tics, however i have a few questions was wondering if you

could help :

 

1) I see many Carnosine & L-Carnosine supplements selling online, what is the difference

between the 2? Can i get the L-Carnosine of should i go get Carnosine?

 

2) I see that you mentioned that once you get off Carnosine the tics return, so does this mean that

i have to take Carnosine for the rest of my life? Also after taking it for a long period of time, do u know if

the Carnosine supplements simply not take effect anymore over time?

 

The neuro prescribe clonepazam but its hopeless & doesn't help at all he didn't even think it was a serious

disorder and told me other than clonepazam there is nothing else he can do.

 

I am just desperate to find a relief for my tics as it gets socially embarassing! :(

 

Thank you.

fuschia

 

 

 

 

 

 

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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Hi Fuschia:

 

1) I see many Carnosine & L-Carnosine supplements selling online, what is the difference

between the 2? Can i get the L-Carnosine of should i go get Carnosine?

 

I think they are the same; two sources I like are www.lef.org (high price and quality) and www.swansonvitamins.com (discount prices; 60 caps of 500 mg Carnosine under $20).

 

2) I see that you mentioned that once you get off Carnosine the tics return, so does this mean that

i have to take Carnosine for the rest of my life? Also after taking it for a long period of time, do u know if

the Carnosine supplements simply not take effect anymore over time?

 

Yes, I think one needs to keep taking it. But I have observed some residual benefits such as the inner calmness (not flying into rage, etc) remain even after suspending Carnosine. (But I haven't tried suspending Carnosine for any length of time -- just a week or so). On the upside, Carnosine is an anti-aging supplement and you really feel that effect in the mornings when one is able to get out of bed without bodyache, etc.

Would body develop resistance to Carnosine? I have completed a year on Carnosine, and it still seems to be working. I'd expect it to continue working since Carnosine's role seems to be that of a deficient nutrient rather than a drug.

 

I am just desperate to find a relief for my tics as it gets socially embarassing!

 

Trust me, I know the feeling! On the bright side, it can really help you figure out who your real friends are!

 

If this is the first time you are attempting alternative therapy, I'd also recommend

1. Magnesium Taurate

2. Avoiding all kinds of allergens -- food, chemicals, perfumes, preservatives, etc.

3. Herbal detoxification

4. Meditation

 

I hope Carnosine works for you. My best wishes are with you.

 

Firefly.

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  • 2 months later...

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