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RE: [Mito] Health is going down quickly! Help!

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  • Roger Kulp
    I have cerebral folate deficiency syndrome,and autism.I am now working towards a mito diagnosis.I have been on B12 for years for megaloblastic anemia.From what
    Message 1 of 7 , May 1, 2013
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      I have cerebral folate deficiency syndrome,and autism.I am now working towards a mito diagnosis.I have been on B12 for years for megaloblastic anemia.From what I have learned,B12 not folate,is associated with narcolepsy.

      http://www.livestrong.com/article/520570-vitamin-b-12-narcolepsy/

      http://sleepdisorders.dolyan.com/vitamin-b-12-and-narcolepsy/

       

      Roger

       

      To: Mito@yahoogroups.com
      From: johnalyssa43@...
      Date: Tue, 30 Apr 2013 11:18:37 -0700
      Subject: Re: [Mito] Health is going down quickly! Help!

       

      I wonder if rx Leucovorin Calcium (folinic acid) might help you... some kids report big improvement in anxiety (and mood) when on this.  It's been called the "sunshine med".  Some mito patients seem to have a lack of folate...
       
      or maybe your brain phosphocreatine levels are low (as there looks to be a connection between this and narcolepsy) and supplementing with creatine monohydrate (Cytotine by Solace Nutrition) might be helpful.  Discuss these with your MD.  My kids have done very well on creatine... some of the mutations/abnormal labs they have are known to be assoc. with low brain phosphocreatine levels.
       
      Are you taking creatine now?
       
      Antibiotics deplete good gut flora, so getting on a daily high quality probitoic might be helpful.  Remember the gut and brain are connected.  One affects the other.  Limit pro-inflammatory foods...  focus on eating fresh, whole organic foods, no preservatives, or food dyes.  Keep a food journal.... might help you see if "trigger foods" exacerbate anxiety.
       
      Hope you are feeling better soon.  Deep conscience breathing is also helpful for stress...
       
      Found these of interest:
       
      Sleep. 2009 May;32(5):607-13.

      Evidence for metabolic hypothalamo-amygdala dysfunction in narcolepsy.

      Source

      Department of Neurology, University Hospital Zurich, Zurich, Switzerland.

      Abstract

      STUDY OBJECTIVES:

      Proton resonance spectroscopy (1H-MRS) allows noninvasive chemical tissue analysis in the living brain. As neuronal loss and gliosis have been described in narcolepsy, metabolites of primary interest are N-acetylaspartate (NAA), a marker of neuronal integrity and myo-Inositol (ml), a glial marker and second messenger involved in the regulation of intracellular calcium. One 1H-MRS study in narcolepsy found no metabolic changes in the pontomedullary junction. Another study showed a reduction in NAA/creatine-phosphocreatine (Cr) in the hypothalamus of narcolepsy patients with cataplexy. We aimed to test for metabolic changes in specific brain areas, "regions of interest," thought to be involved in emotional processing, sleep regulation and pathophysiology of narcolepsy: hypothalamus, pontomesencephalic junction and both amygdalae.

      DESIGN:

      We performed 1H-MRS using a 3T Philips Achieva whole body MR scanner. Single-voxel proton MR spectra were acquired and quantified with LCModel to determine metabolite concentration ratios.

      SETTING:

      The participants in the study were recruited at the outpatient clinic for sleep medicine, Department of Neurology and magnetic resonance spectroscopy was performed at the MRI facility, University Hospital Zurich.

      PARTICIPANTS:

      1H-MRS was performed in fourteen narcolepsy patients with cataplexy, CSF hypocretin deficiency (10/10) and HLA-DQB1*0602 positivity (14/14) and 14 age, gender and body mass index matched controls. Patients were treatment naïve or off therapy for at least 14 days before scanning.

      MEASUREMENTS AND RESULTS:

      No differences were observed in the regions of interest for (total NAA)/Cr ratios. Myo-Inositol (ml)/Cr was significantly lower in the right amygdala of the patients, compared to controls (P < 0.042). Significant negative correlations only in the patients group were found between (total NAA)/Cr in hypothalamus and ml/Cr in the right amygdala (r = -0.89, P < 0.001), between ml/Cr in hypothalamus and (total NAA)/Cr in the right amygdala (r = -63, P < 0.05) and between ml/Cr in the left amygdala and total NAA)/Cr in the pontomesencephalic junction (r = -0.69, P < 0.05).

      CONCLUSION:

      Our findings suggest amygdala involvement and possible hypothalamo-amygdala dysfunction in narcolepsy.

      Comment in

      PMID:
      19480227
       
      Neurology. 2004 Oct 26;63(8):1513-5.

      In vivo evidence of neuronal loss in the hypothalamus of narcoleptic patients.

      Source

      Dipartimento di Medicina Clinica, e Biotecnologia Applicata D. Campanacci, Universita' di Bologna, Policlinico S. Orsola, Via Massarenti 9, 40138 Bologna, Italy. raffaele.lodi@...

      Abstract

      A dysfunction of the orexin (hypocretin) system in the hypothalamus has recently been linked to the pathogenesis of narcolepsy. The authors used in vivo proton MR spectroscopy to assess the N-acetylaspartate (NAA) content in the hypothalamus of narcoleptic patients. Hypothalamic NAA/creatine-phosphocreatine was reduced in narcoleptic patients compared with control subjects (p < 0.01). Hypothalamic neuronal loss/damage is a central pathogenetic feature in narcolepsy.
      PMID:
      15505179
       
      From: Rob Weiner <rob_weiner@...>
      To: "Mito@yahoogroups.com" <Mito@yahoogroups.com>
      Sent: Wednesday, April 24, 2013 10:12 PM
      Subject: Re: [Mito] Health is going down quickly! Help!
       
      Beth-

      It doesn't need to be the new normal.  Keep focused on controlling your stress and working on your health.  It can get better.

      Try new diets, try tweaking the mito cocktail you are taking, keep track of what helps and what does not.

      Just keep cool and keep trying.

      -Rob

      From: 40forMe <bethsfamily3@...>
      To: Mito@yahoogroups.com
      Sent: Monday, April 22, 2013 5:57 PM
      Subject: [Mito] Health is going down quickly! Help!
       
      Hi, I am Beth and have been on here before. I have Mito IV, Narcolepsy, Cataplexy, fibro...you get the gist. Anyway, my life has been very stressful for a long time with divorce and my son moving to his father's. My health has gone spiraling down since the beginning of this year. The anxiety is out of control as well. I was on some anxiety meds but they were not enough. Then I was put on Amatryptiline (sp?) and it was much better but my strength went down. I cut the Amatrip. to half, only 5mg. Antibiotics for a sinus infection also made the energy go down. I feel my health going down rapidly. My GP said to accept that this is my new "normal," but i do not agree. Now after a busy weekend, I am ill again (feels like strep). Thoughts??????????????????

    • LindaP
      I offer as much as i know & feel it saves my life yet not cure. i use high dose Vit B complex B 100 mg 2x day, green &black tea & other teas eg red white
      Message 2 of 7 , May 21, 2013
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        I offer as much as i know & feel it saves my life yet not cure. i use high dose Vit B complex B 100 mg 2x day, green &black tea & other teas eg red white orange herbal etc help immune brain body black & green are important over days use, i try herbs at times guarana, gota kola muira puma helps ataxia & other energy feel good herbs, flower essences, homeopathy, naturopathy etc. I read a woman survived pancreatic cancer by tons supplements but it takes finding momentum with your energy. I'm impressed with little Qigong i've tried & energy medicine sites exercises that help small bits. i love IV saline especially with nutrients but even without & oxygen but Dr's untrained dont get import & often deny wrongly. I use heavy cook herbs spices on foods. Pumpkin Pie for mood stress & italian curry & cajun etc for immune. I swear by this & eat herbs at start & end of Bible. Linda

        --- In Mito@yahoogroups.com, "40forMe" <bethsfamily3@...> wrote:
        >
        > Hi, I am Beth and have been on here before. I have Mito IV, Narcolepsy, Cataplexy, fibro...you get the gist. Anyway, my life has been very stressful for a long time with divorce and my son moving to his father's. My health has gone spiraling down since the beginning of this year. The anxiety is out of control as well.
        >
        > I was on some anxiety meds but they were not enough. Then I was put on Amatryptiline (sp?) and it was much better but my strength went down. I cut the Amatrip. to half, only 5mg. Antibiotics for a sinus infection also made the energy go down.
        >
        > I feel my health going down rapidly. My GP said to accept that this is my new "normal," but i do not agree. Now after a busy weekend, I am ill again (feels like strep).
        >
        > Thoughts??????????????????
        >
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