Guest guest Posted June 2, 2003 Report Share Posted June 2, 2003 I have been going back and forth with Masshealth (Medicaide) about paying for Austen's CoQ10. After being denied the second time I was given the opportunity to appeal. I got bold and sent in a letter of appeal. Much to my surprise I just got a letter back from Masshealth saying that they WOULD pay for it as long as I had doctors appeals (no problem) and articles about CoQ10 which would substantiate the fact that it has been found to be very helpful for mito disorders. There is no question that it has helped Austen enormously as far as cognitive reasoning. Does anyone have any articles available on it's benefits and how it works? I appreciate any help. Thanks, Gwen mom to Austen GA2 age 6 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2003 Report Share Posted June 2, 2003 I might suggest you visit your local health food store. A lot of times they will have different brochures on benefits of each vitamin/supplement. I was wondering how much you all typically pay for your CoQ10? Our chiropractor is able to order from different companies and she orders mine at cost for me. I still think it's rather expensive though. She orders from Metagenics and it's $36.00 (cost) for 60 100mg softgels. It also has 100iu of Vitamin E. I am trying to remember if I read something in a previous post about a company offering a big discount to mito customers. (Maybe I was just dreaming...) One more question while I am here. Does anyone have problems with their children waking up for hours in the middle of the night? Lindsey will sometimes be awake for up to 3 hours in the middle of the night. She doesn't seem to be in any pain, she just doesn't sleep. I wouldn't think anything of it but, she does it sometimes 3-4 times per week. Thanks! Kim - Mommy to and Lindsey (20 months) Complex I and IV Journal Articles about CoQ10? I have been going back and forth with Masshealth (Medicaide) about paying for Austen's CoQ10. After being denied the second time I was given the opportunity to appeal. I got bold and sent in a letter of appeal. Much to my surprise I just got a letter back from Masshealth saying that they WOULD pay for it as long as I had doctors appeals (no problem) and articles about CoQ10 which would substantiate the fact that it has been found to be very helpful for mito disorders. There is no question that it has helped Austen enormously as far as cognitive reasoning. Does anyone have any articles available on it's benefits and how it works? I appreciate any help.Thanks,Gwenmom to Austen GA2 age 6Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2003 Report Share Posted June 2, 2003 Kim, If she has sleep apnea it might be that. I read it as a symptom once and I identify with it. I wake up with a start and I am WIDE awake and have learned all I can do is get up and do stuff for 2-4 hours. Then I get sleepy again and sack out (unless it's time to get up for the day in which case I'm really dragging). Scoggins Journal Articles about CoQ10? I have been going back and forth with Masshealth (Medicaide) about paying for Austen's CoQ10. After being denied the second time I was given the opportunity to appeal. I got bold and sent in a letter of appeal. Much to my surprise I just got a letter back from Masshealth saying that they WOULD pay for it as long as I had doctors appeals (no problem) and articles about CoQ10 which would substantiate the fact that it has been found to be very helpful for mito disorders. There is no question that it has helped Austen enormously as far as cognitive reasoning. Does anyone have any articles available on it's benefits and how it works? I appreciate any help.Thanks,Gwenmom to Austen GA2 age 6Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2003 Report Share Posted June 2, 2003 Is there anything on the mito associations websites? Or from any company that makes the CoQ10? Call the company you buy yours from, they'll want to keep making money off you so they are very likely to help you with articles to substantiate it's use although there might be a conflict of some sort (you know, all the legal garbage). Scoggins Journal Articles about CoQ10? > I have been going back and forth with Masshealth (Medicaide) about > paying for Austen's CoQ10. After being denied the second time I was > given the opportunity to appeal. I got bold and sent in a letter of > appeal. Much to my surprise I just got a letter back from Masshealth > saying that they WOULD pay for it as long as I had doctors appeals > (no problem) and articles about CoQ10 which would substantiate the > fact that it has been found to be very helpful for mito disorders. > There is no question that it has helped Austen enormously as far as > cognitive reasoning. Does anyone have any articles available on it's > benefits and how it works? > I appreciate any help. > Thanks, > Gwen > mom to Austen GA2 age 6 > > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2003 Report Share Posted June 2, 2003 Hi Kim: I have a daughter, Leah, who is 5 years old. She still wakes up in the middle of the night but some times for only a little bit. Many times I just need to crawl in to bed with her and she goes back to bed right away. We have a double bed and we both get the needed sleep. When she does sleep through the night I rejoice because I get good solid sleep. As for CoQ10 I get maxi-sorb from Country Life at a health food store. It is 30 mg for now and there are 50 softgels in a bottle. Leah takes this twice a day. There is 6 I>U> of vitamin E in there. We pay $29.95 for two bottles of Country Life. I get all of Leah's supplements from the health food store because I feel I'm getting pure stuff and no extra ingredients like unneccessary dyes and stuff like that. Nerenhausen mom to Leah Kim Novy wrote: I might suggest you visit your local health food store. A lot of times they will have different brochures on benefits of each vitamin/supplement. I was wondering how much you all typically pay for your CoQ10? Our chiropractor is able to order from different companies and she orders mine at cost for me. I still think it's rather expensive though. She orders from Metagenics and it's $36.00 (cost) for 60 100mg softgels. It also has 100iu of Vitamin E. I am trying to remember if I read something in a previous post about a company offering a big discount to mito customers. (Maybe I was just dreaming...) One more question while I am here. Does anyone have problems with their children waking up for hours in the middle of the night? Lindsey will sometimes be awake for up to 3 hours in the middle of the night. She doesn't seem to be in any pain, she just doesn't sleep. I wouldn't think anything of it but, she does it sometimes 3-4 times per week. Thanks!Kim - Mommy to and Lindsey (20 months) Complex I and IV Journal Articles about CoQ10? I have been going back and forth with Masshealth (Medicaide) about paying for Austen's CoQ10. After being denied the second time I was given the opportunity to appeal. I got bold and sent in a letter of appeal. Much to my surprise I just got a letter back from Masshealth saying that they WOULD pay for it as long as I had doctors appeals (no problem) and articles about CoQ10 which would substantiate the fact that it has been found to be very helpful for mito disorders. There is no question that it has helped Austen enormously as far as cognitive reasoning. Does anyone have any articles available on it's benefits and how it works? I appreciate any help. Thanks, Gwen mom to Austen GA2 age 6 Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2003 Report Share Posted June 2, 2003 Kim, I meant to add that I've gotten very little sleep in life anyway. First it was my leg cramps, enuresis, and abuse. Then it was my kids, then the grandkids, and now even my husband. I don't think God meant for me to sleep! Even my kids-in-law have had me up during the night for some crisis or another. Remember that ADHD is a mito disorder (at least many of the mito doctors think so and feel it may be the precursor to Alzheimer's) and look how little people with ADHD sleep. Nightmares, sleepwalking and sleep talking are all common at our house too. I read that nightmares can be associated with sleep apnea too. Scoggins Journal Articles about CoQ10? I have been going back and forth with Masshealth (Medicaide) about paying for Austen's CoQ10. After being denied the second time I was given the opportunity to appeal. I got bold and sent in a letter of appeal. Much to my surprise I just got a letter back from Masshealth saying that they WOULD pay for it as long as I had doctors appeals (no problem) and articles about CoQ10 which would substantiate the fact that it has been found to be very helpful for mito disorders. There is no question that it has helped Austen enormously as far as cognitive reasoning. Does anyone have any articles available on it's benefits and how it works? I appreciate any help.Thanks,Gwenmom to Austen GA2 age 6Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2003 Report Share Posted June 2, 2003 Hi Kim and , Zack takes the CoQ 2x/day each at 30mg. We get ours from GNC..and it can be ordered online. We pay $24.99 for 120 softgels that I stick w/ a needle and squirt into his carnitor so it doesn't get stuck on a spoon. Other ingredients listed are soybean oil, gelatin, glycerin, chlorophyll, and titanium dioxide(natural mineral whitener). Also has anyone checked out coral calcium? This is suppose to help remove the free radicals that make us sick and our kids! I continue to hear awesome stories about this. My husband was even stationed in Okinawa where he saw that people lived there longer and were a lot healthier...people think it's due to the coral calcium found there. Check out the site. http://www.robert-barefoot-calcium.com/ If anyone has heard of this let me know, I have been thinking about trying it. Mom to Zachary 3yrs old (SCAD Variant and Complex 1 def.) 4 1/2 yrs old and not tested Journal Articles about CoQ10? I have been going back and forth with Masshealth (Medicaide) about paying for Austen's CoQ10. After being denied the second time I was given the opportunity to appeal. I got bold and sent in a letter of appeal. Much to my surprise I just got a letter back from Masshealth saying that they WOULD pay for it as long as I had doctors appeals (no problem) and articles about CoQ10 which would substantiate the fact that it has been found to be very helpful for mito disorders. There is no question that it has helped Austen enormously as far as cognitive reasoning. Does anyone have any articles available on it's benefits and how it works? I appreciate any help. Thanks, Gwen mom to Austen GA2 age 6 Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2003 Report Share Posted June 2, 2003 Kim, We buy our CoQ10 from walmart for 11.94 for 30 100mg tablets. Dr. Cohen tested it and said it was fine. My daughter takes 200 mg a day and that is the best price that I have found. Every once in awhile Vitamin world will have a sale and then I buy it from them. My daughters name is also Lindsey and she used to wake up at night just about every night. She would also stay up for hours. She is 7 now and doesn't do that anymore. She stopped about 2 years ago. Amy (mother to Lindsey complex IV, hypertrophic cardiomyopathy, lactic acidosis) Journal Articles about CoQ10? I have been going back and forth with Masshealth (Medicaide) about paying for Austen's CoQ10. After being denied the second time I was given the opportunity to appeal. I got bold and sent in a letter of appeal. Much to my surprise I just got a letter back from Masshealth saying that they WOULD pay for it as long as I had doctors appeals (no problem) and articles about CoQ10 which would substantiate the fact that it has been found to be very helpful for mito disorders. There is no question that it has helped Austen enormously as far as cognitive reasoning. Does anyone have any articles available on it's benefits and how it works? I appreciate any help.Thanks,Gwenmom to Austen GA2 age 6Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2003 Report Share Posted June 2, 2003 Kim, used to be awake in middle of the night for hours. It did start the day after his fourth set of vaccines. And it was every night for 8 mos. He was awake, not seeming to be ill, just awake. We rocked and he ate and so forth and nothing I did helped. He would be up 4-5 hours. He did not make it up during the day. When I look back at pictures it is obvious his brain was swollen. Really obvious. Even now when he no longer looks that way, his EEG states chronic encephalopathy. One night while up he had a serious (eyes rolled back, etc.) and then the next night he went back to sleeping through the night - like he had done prior to the shots at 13 mos. of age. The only other times I noticed night waking since then was when I would try to adjust his nutrient levels, etc. with vitamins and minerals. I was doing this on my own as we could not get appropriate testing done at the time, so I had no idea what I was doing, but was desperate. Had to move to a different state for relevant testing - no longer working on my own, thank goodness! cara -----Original Message-----From: Kim Novy Sent: Monday, June 02, 2003 6:55 PMTo: Mito Subject: Re: Journal Articles about CoQ10? I might suggest you visit your local health food store. A lot of times they will have different brochures on benefits of each vitamin/supplement. I was wondering how much you all typically pay for your CoQ10? Our chiropractor is able to order from different companies and she orders mine at cost for me. I still think it's rather expensive though. She orders from Metagenics and it's $36.00 (cost) for 60 100mg softgels. It also has 100iu of Vitamin E. I am trying to remember if I read something in a previous post about a company offering a big discount to mito customers. (Maybe I was just dreaming...) One more question while I am here. Does anyone have problems with their children waking up for hours in the middle of the night? Lindsey will sometimes be awake for up to 3 hours in the middle of the night. She doesn't seem to be in any pain, she just doesn't sleep. I wouldn't think anything of it but, she does it sometimes 3-4 times per week. Thanks! Kim - Mommy to and Lindsey (20 months) Complex I and IV Journal Articles about CoQ10? I have been going back and forth with Masshealth (Medicaide) about paying for Austen's CoQ10. After being denied the second time I was given the opportunity to appeal. I got bold and sent in a letter of appeal. Much to my surprise I just got a letter back from Masshealth saying that they WOULD pay for it as long as I had doctors appeals (no problem) and articles about CoQ10 which would substantiate the fact that it has been found to be very helpful for mito disorders. There is no question that it has helped Austen enormously as far as cognitive reasoning. Does anyone have any articles available on it's benefits and how it works? I appreciate any help.Thanks,Gwenmom to Austen GA2 age 6Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2003 Report Share Posted June 3, 2003 Hope this article helps. http://www.coenzymeq10supplement.com/brain-cells-coenzymeq10.htm _________________________________________________________________ Help STOP SPAM with the new MSN 8 and get 2 months FREE* http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2003 Report Share Posted June 3, 2003 http://www.coenzymeq10supplement.com/references.htm Benefits of CoenzymeQ10 in Treatment of Mitochondrial and Neuromuscular Diseases: -------------------------------------------------------------------------------- Since the discovery of the first genetic disease of the mitochondria in 1988, the number of recognized mitochondrial diseases has ballooned. These diseases present extraordinarily complicated genetic and clinical pictures that cut across established diagnostic categories. They primarily affect the brain, nerve, muscle, heart, kidney and endocrine system, whose high energy requirements can no longer be fully met. In addition, a wide range of degenerative diseases have been found to involve one or more of hundreds of known mitochondrial mutations. Patients with genetic Coenzyme Q10 deficiency may suffer dysfunctions in brain, nerve and muscle, often including exertional fatigue and seizures. Such patients appear to respond to Coenzyme Q10 supplementation, but observations are limited since diagnosis of this disorder is in its infancy. Coenzyme Q10 deficiency is one of the mitochondrial diseases caused by mutations in non-mitochondrial DNA, that is DNA in the cell nucleus. Case reports and pilot studies have found that some patients with mitochondrial diseases respond to long-term Coenzyme Q10 therapy. For example, promising results have been reported in MELAS, Kearns-Sayre syndrome and maternally inherited diabetes with deafness. An Italian study demonstrated the impact of Coenzyme Q10 therapy on the living tissue of six patients with mitochondrial cytopathies. They measured the bioenergetic activity in the brain and skeletal muscle of the patients using high-technology diagnostic equipment (phosphorus magnetic resonance spectroscopy). After six months of Coenzyme Q10 therapy at 150 mg per day, brain bioenergetics returned to normal in all patients, and skeletal muscle energetics improved significantly. A new study applies this diagnostic technology to Friedrich’s Ataxia, which is characterized by a deficiency of a mitochondrial protein called frataxin recently discovered to activate cellular respiration. The study found that supplementation with Coenzyme Q10 plus vitamin E brought a “dramatic improvement of cardiac and skeletal muscle bioenergetics. . . after only three months of therapy” (Lodi R et al., 2001)1. A just-published study of familial ataxias with no known genetic cause reports that Coenzyme Q10 supplementation improved patients’ scores by 25% on a scale measuring balance, speech and movement. The five patients who could not walk at the beginning of the trial were able to walk with some assistance after supplementation (dose levels varied). Since all cells (except red blood cells) contain mitochondria, mitochondrial diseases tend to affect multiple body systems. Of course some organs and tissues depend more than others upon the energy the mitochondria produce. At the genetic level, the picture is more complex. The level of inherited mitochondrial DNA defects may establish an individual’s “bioenergetic baseline.” As additional mitochondrial DNA defects develop over the course of a lifetime, bioenergetic capacity may decline until thresholds are crossed where organs malfunction or become susceptible to degeneration. Another genetic complication is that each mitochondrion contains many copies of mitochondrial DNA, and each cell and tissue contains many mitochondria. At both these levels, there may be many different defects in different copies of the mitochondrial genome. This is especially true of the defects that cause clinical pathologies. For a particular tissue or organ to become dysfunctional, a critical number of its mitochondrial DNA’s must be mutated. This is called the “threshold effect.” Each organ or tissue is more susceptible to some mutations than others and has its own particular mutational threshold, energy requirement and sensitivity to oxidative stress. All these factors combine to determine how it will respond to genetic damage. The picture is further complicated by interactions between DNA in mitochondria and in the cell nucleus. The result is that the same mitochondrial DNA mutations can produce remarkably different symptoms in members of the same family, while different mutations can produce the same symptoms. Some of the specific mitochondrial mutations found in mitochondrial diseases develop spontaneously in the aged. More generally, the picture we have sketched of mitochondrial disease illuminates the consequences of Linnane’s theory: it helps explain how mitochondrial mutation-driven bioenergetic decline can have such varied and complex effects over the course of aging. There is a heterogeneous group of neuromuscular disorders whose exact cause and effective treatment remain largely unknown. These include muscular dystrophy, some encephalomyopathies and various neurogenic atrophies. Several small trials and case reports suggest that some patients with these diseases respond to Coenzyme Q10 therapy. Coenzyme Q10 pioneer Karl Folkers observed that cardiovascular disorders are associated with these conditions, as might be expected if cellular energy production were impaired. He therefore conducted a double-blind trial to assess the effect of Coenzyme Q10 on cardiac performance in patients with muscular dystrophies and neurogenic atrophies. After three months of treatment with 100 mg of Coenzyme Q10 per day, cardiac function was significantly improved in all patients and half the patients showed distinct improvement in movement and exercise capacity. Folkers hypothesized that these conditions have in common a deficiency of Coenzyme Q10. By the same token, mitochondrial defects may contribute to heart disease in some patients. A recent study of dilated cardiomyopathy found that about one in four patients had pathological mutations in the mitochondrial DNA of heart tissue. See References CoQ10 Researh References: -------------------------------------------------------------------------------- KL et al. Changes of respiratory chain activity in mitochondrial and synaptosomal fractions isolated from the gerbil brain after graded ischaemia. 1995. J Neurochem 64: 2222-2229. Ankarcrona M et al. Glutamate-induced neuronal death: a succession of necrosis or apoptosis depending on mitochondrial function. 1995. Neuron 15: 961-973. Barbiroli B et al. Coenzyme Q10 improves mitochondrial respiration in patients with mitochondrial cytopathies. An in vivo study on brain and skeletal muscle by phosphorous magnetic resonance spectroscopy. 1997. Cell Molec Biol 43: 741-749. Beal MF. Aging, energy, and oxidative stress in neurodegenerative diseases. 1995. Ann Neurol 38: 357-366. Beal MF et al. Coenzyme Q10 and nicotinamide block striatal lesions produced by the mitochondrial toxin malonate. 1994. Ann Neurol 36: 882-888. Beal MF et al. Coenzyme Q10 atenuates the 1-methyl-4-phenyl-1,2,3,6-tetrahydropyridine (MPTP) induced loss of striatal dopamine and dopaminergic axons in aged mice. 1998. Brain Res 783: 109-114. Bendahan D et al. P NMR spectroscopy and ergometer exercise test as evidence for muscle oxidative performance improvement with coenzyme Q in mitochondrial myopathies. 1992. Neurology 42: 1203-1208. Bolanos JP et al. 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Lodi R et al. Antioxidant treatment improves in vivo cardiac and skeletal muscle bioenergetics in patients with Friedreich’s ataxia. 2001. Ann Neurol 49: 590-6. Lonnrot K et al. Control of arterial tone after long-term coenzyme Q10 supplementation in senescent rats. 1998. Brit J Pharmacol 124: 1500-1506. Love S. Oxidative stress in brain ischemia. 1999. Brain Pathol 9: 119-131. ni C et al. Muscle biopsy in Alzheimer’s disease: morphological and biochemical findings. 1991. Clin Neuropathol 10: 171-176. Mark RJ et al. A role for 4-hydroxynonenal, an aldehydic product of lipid peroxidation, in disruption of ion homeostasis and neuronal death induced by amyloid b-peptide. 1997. J Neurochem 68: 255-264. Mark RJ et al. Amyloid b-peptide impairs glucose transport in hippocampal and cortical neurons: involvement of membrane lipid peroxidation. 1997. J Neurosci 17: 1046-1054. Markesbery WR. Oxidative stress hypothesis in Alzheimer’s disease. 1997. Free Radic Biol Med 23: 134-147. 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Molec Aspects Med. 15, Suppl: S109-S115. Munch G et al. Alzheimer’s disease - synergistic effects of glucose deficit, oxidative stress and advanced glycation endproducts. 1998. J Neural Transm 105: 439-461. AN et al. Mitochondria in neurodegeneration: bioenergetic function in cell life and death. 1999. J Cereb Blood Flow Metab 19: 231-245. Musumeci O et al. Familial cerebellar ataxia with muscle coenzyme Q10 deficiency. 2001. Neurology 56: 849-55. Nicotera P et al. Neuronal cell death: a demise with different shapes. 1999. Trends Pharmacol Sci 20: 46-51. Novelli A et al. Glutamate becomes neurotoxic via the N-methyl-D-aspartate receptor when intracellular energy levels are reduced. 1988. Brain Res 451: 205-212. Ogawa N et al. Survival effect of coenzyme Q10 and naloxone on experimental stroke gerbils. 1986. Pharmacol Biochem Behav 24: 315-317. Ristow M et al. Frataxin activates mitochondrial energy conversion and oxidative phosphorylation. 2000. Proc Natl Acad Sci U S A. 97: 12239-43. Sharman EH et al. Effects of age and dietary antioxidants on cerebral electron transport chain activity. 2001. Neurobiol Aging 22: 629-34. Shults CW et al. Coenzyme Q10 levels correlate with the activities of complexes I and II/III in mitochondria from parkinsonian and nonparkinsonian subjects. 1997. Ann Neurol 42: 261-264. Shults CW et al. Absorption, tolerability, and effects on mitochondrial activity of oral coenzymeQ10 in parkinsonian patients. 1998. Neurology 50: 793-5. Schulz JB et al. Neuroprotective strategies for treatment of lesions produced by mitochondrial toxins: implications for neurodegenerative diseases. 1996. Neuroscience 71: 1043-1048. MA et al. Widespread peroxynitrite-mediated damage in Alzheimer’s disease. 1997. J Neurosci 17: 2653-2657. Sobreira C et al. Mitochondrial encephalomyopathy with coenzyme Q10 deficiency. 1997. Neurology 48: 1238-1243. Tatton WG et al. Mitochondria in neurodegenerative apoptosis: an opportunity for therapy? 1998. Ann Neurol 44, Suppl 1: S134-S141. Tatton WG et al. Apoptosis in neurodegenerative diseases: the role of mitochondria. 1999. Biochim Biophys Acta 1410: 195-213. C et al. Mitochondrial dysfunction in neurodegenerative disorders and ageing. 2001. Adv Exp Med Biol 487: 229-51. Veitch K et al. Global ischemia induces a biphasic response of the mitochondrial respiratory chain. 1992. Biochem J 281: 709-715. Volpe M et al. Abnormalities of endothelial function in the pathogenesis of stroke: the importance of endothelin. 2000. J Cardiovasc Pharmacol 35, Suppl 2: S45-48. Webster MT et al. The effects of perturbed energy metabolism on the processing of amyloid precursor protein in PC12 cells. 1998. J Neural Transm 105: 839-853. Weyer G et al. A controlled study of 2 doses of idebenone in the treatment of Alzheimer’s disease. 1997. Neuropsychobiology 36: 73-82. Ying W. Deleterious network: a testable pathogenetic concept of Alzheimer’s disease. 1997. Gerontology 43: 242-253. Zeng Z et al. Mitochondrial DNA deletions are associated with ischemia and aging in Balb/c mouse brain. 1999. J Cell Biochem 73: 545-553. back to top _________________________________________________________________ The new MSN 8: smart spam protection and 2 months FREE* http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
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