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Carnosine, a miracle remedy (at least for me)

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  • Carnosine, a miracle remedy (at least for me)

    I tried posting this on the BrainTalk TS forum, but they threw it out and canceled my membership! They apparently thought I was trying to sell something. In my defense, I have nothing to sell, no agendas to push, no vested interests to safeguard. I am amazed at how Carnosine has transformed my life and I want to share it with others who may be benefited.

    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 (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.

    With much good wishes,
    Firefly.

  • #2
    Carnosine, a miracle remedy (at least for me)

    Firefly,

    Your lengthy discourse on the miracle benefits of this substance might be persuasive but for the absence of sound medical evidence.

    Research on this substance reveals a variety of widespread claims for effectiveness in the treatment of autism, eyesight, ageing and multiple sclerosis.

    The substance appears to be effective in the treatment of medically unrelated disorders, with references to articles that appear to be written as self serving testimonials to support marketing efforts.

    Even the claimed M.D.s with claimed studies on this substance are selling it from their websites.

    From a scientific point of view, these conflicts of interest combined with outlandish claims for effectiveness with no disadvantages are suspect.

    The substance may be producing the results you hope to achieve, but there appears to be no valid scientific data to support the use of this substance in the treatment of the disorders discussed in this Forum.

    The bias of TSFC and this Forum is clearly toward traditional medicine, supported by scientifically controlled clinical trials which are then published in reputable mainstream peer reviewed journals.

    Treatment based on anecdotal reports is not considered valid and is felt to present false hope to people often desperate for relief or a cure.

    Tourette Syndrome is a neurological disorder that needs to be treated by a competent health professional with training and expertise in the disorder. Because Tourette Syndrome can present with other co existing diagnoses, and must be diagnosed by observation, the physician being consulted must fully understand Tourette Syndrome.

    Medicine may not have all the answers which is why research continues in areas that are not fully understood.

    There is no miracle cure that treats every problem at the same time doing no harm. Purveyors of miracle cures talk in half truths and medico-speak, which to the uninformed might sound credible.

    Unfortunately the result is usually money spent with little real improvement.

    In our discussions of medications on the TSFC Forum, dosages and regimens are never presented in a posting. We are not practitioners and are not qualified to recommend dosages to our members. Therefore your dosage assertions are inappropriate.
    Steve
    TouretteLinks Forum

    Comment


    • #3
      Carnosine, a miracle remedy (at least for me)

      Steve:
      I agree with you that
      i) a disorder/disease where the current approaches not working well and people are desperate for a solution is prime hunting grounds for scam artists.
      ii) treatments and substances that have been given the seal of approval after extensive double-blind trials are certainly preferable to speculative ones.
      iii) caution should always accompany the desire and courage to experiment with new treatments.

      Having said that, here's my situation:
      i) I am not a medical researcher or practitioner; neither am I a seller of any supplements or treatements. What I am is a person who has lived with TS for almost half a century.
      ii) I find a supplement which has all but arrested the TS tics, transformed my life, and persisted in its effect for over 8 months.
      iii) I want to let TSers know of my experience (including the dosage I take), and let them use the information as they please (including scoff at the veracity of my experience).

      What do I do? Do I, for the sake of believablility, understate what I have experienced? Or, Should I say Carnosine's credentials are well-established? No, not only are there un- or under-researched claims of Carnosine for autism, eyesight, ageing and multiple sclerosis (as you have pointed out), but there is also the fact that there is NO evidence that Carnosine has even been tried on TS! Yet, I am reminded a million times a day -- by the sound of silence and quiet, the absence of vocal tics, neck turning, elbow ribbing, word repeating. What do I do? Do I post it in TS forums (overcoming my reluctance to participate in any online chat groups ever) or should I let this discovery be unshared, because it may not work for anyone else? I finally posted my story because between the rapacious scam artists on the one side, and the well-founded skeptics like you on the other, there may be a person or two, who MIGHT be benefited by my experience. I have made it amply clear that it is one person's experience and that it may not work for everybody (or for anyone else, for that matter).

      You say
      The bias of TSFC and this Forum is clearly toward traditional medicine, supported by scientifically controlled clinical trials which are then published in reputable mainstream peer reviewed journals.
      Treatment based on anecdotal reports is not considered valid and is felt to present false hope to people often desperate for relief or a cure.

      I have a question here. There is a person on this board who is so tormented by vocal tics that he wants to clip his vocal cords. Since vocal tics have been one of my salient symptoms, I have used (for the last 30 years), a kind of breath control technique borrowed from the yogic discipline of pranayama, which has helped control the vocal tics some (say,about 30% improvement). No one has ever done any research or clinical trials on the use of pranayama to control vocal tics in TS. Now, Steve, should I share my experience (clearly anecdotal) on this forum
      or not?
      I understand your caution and frustration and agree with much of what you say. But, you (and this forum) will have to decide if you want to allow a person with TS to share his experience the way he experienced it.

      You say
      Purveyors of miracle cures talk in half truths and medico-speak, which to the uninformed might sound credible.
      I am going to assume you are making a general observation and not referring to me -- and am going to let it go at that!

      Thank you,
      Firefly.

      Comment


      • #4
        Carnosine, a miracle remedy (at least for me)

        Firefly,

        Thank you for your thoughtful reply and for sharing your experience.

        My comment about purveyors of miracle cures was a general observation and was by no means directed at you.

        Your second example of using a breathing control technique is not the same as consuming a substance. A technique such as breathing control, bio feedback or yoga are non invasive and do not affect body chemistry in potentially adverse manner.

        In fact I would invite you to post a new topic to share what sounds like an interesting and helpful technique.

        Anything which is consumed has an effect on body chemistry, and unless its effects are properly understood. it should be avoided. Once understood medications should taken under professional supervision and only after fully understanding the benefits vs the risks.

        Approved medications, as you well know, undergo close scrutiny and in partnership with one's physician, a benefits vs risks decision can be made as to whether one's quality of life can be improved.

        Unfortunately, at this time such scrutiny is not available for most alternative therapies, so an evaluation of benefits vs risks cannot be easily made. In addition the absence of quality control over manufacture and the absence in consistency or regulation of ingredients of such substances can produce unpredictable results.

        Analyses of the composition of alternative medications have revealed significant inconsistency in the concentration of active ingredient despite the concentration claimed on the label.

        If one is already taking prescribed or over the counter medications, there can be unexpected interactions with these compounds for which warnings are difficult to find.

        Therapies should be evaluated on the basis of benefits vs risks in order to improve quality of life, and there appears to be a very great risk compared to any possible benefit using these compounds.

        The final choice rests with each individual, and your choice has been to take this compound.

        The policy of TSFC and this Forum is to inform our members on how to evaluate the benefits and risks being offered.

        Scientific evidence based on properly designed studies where results can be reproduced, and published in peer reviewed publications informs physicians and patients of the true benefits vs risks, resulting in an informed decision.
        Steve
        TouretteLinks Forum

        Comment


        • #5
          Carnosine, a miracle remedy (at least for me)

          Steve:

          I have a problem with your response; in fact, more than one.

          While you have frequently mentioned ?the policies of TSFC and the Forum,? I am not sure there is clarity or consistency in the policies, as stated by you. First you say, the policy is to report only well-researched and published treatments/substances on this forum. Now you are saying if it is a technique and not a substance, then it is okay. You are changing the criteria on the fly.

          What about vitamins? If someone wants to report he had good results by taking Vit B6, would that pass your test? After all, vitamins and minerals are not prescription drugs and are naturally found nutrients. To disallow that would look silly, wouldn?t it? But if you do allow it, I?d argue that B vitamins are not made in the body (they are extraneous substances needed by the body), but Carnosine is synthesized by the body (by the enzyme Carnosine synthetase) and is found in the muscle and brain tissues. So, Carnosine is more natural than the B vitamins, no?

          Or, one could argue that it is quite possible to abuse pranayama (yogic breath control techniques) to the detriment of the body, and so, that shouldn?t be allowed either. Any of these arguments would be more consistent than your position.

          My question is, aren?t you making an arbitrary decision for the readers? Why not let the readers themselves decide? We may not be medical experts, but most of us are educated, thinking individuals -- just like you. We know not to swallow whole everything we read on the internet. We know that an anecdotal report from a non-medical person is not as reliable as some longitudinal research results found on the Sloan-Kettering website. We use another person?s experience as a starting point in our investigation. If another person with TS has used a natural substance with success, it may raise some reader?s eyebrows enough for him to look into it. If he is a responsible individual, he will probably talk to his doctor, make sure there are no contraindications, and then only try it.
          You say
          The final choice rests with each individual, and your choice has been to take this compound.
          To deny the other readers of this forum that opportunity through the forum policy restrictions makes no sense to me.

          The only restriction that I can appreciate is to ensure that the forum is not hijacked by commercial interests wanting to push their proprietary products.

          Regards,
          Firefly.

          Comment


          • #6
            Carnosine, a miracle remedy (at least for me)

            Firefly,

            The purpose of our Forum is to provide support and direction to people having to deal with Tourette Syndrome.

            Treatment options have to be grounded in science and supported by data. Anecdotal claims by individuals without adequate medical training can be misleading and may not provide sufficient information about potential risks.

            There may be other venues where discussions of alternative therapies can take place, but this is not one of them.

            Why not let the readers themselves decide?
            Because the TSFC Forum is a moderated Forum with guidelines set out by TSFC as opposed to an open newsgroup run by its readers.

            Thank you for expounding your view, your point is made and we will close the discussion by agreeing that we disagree.
            Steve
            TouretteLinks Forum

            Comment

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