Guest guest Posted December 3, 2001 Report Share Posted December 3, 2001 Has anyone had positive results using Sphingolin? If so, how long before you noticed any change? Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 , I noticed you sent this out to several groups. If you get back anything interesting please share. Thanks, Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 The testimony below mentions a supplement I've not heard of. Have any of you tried this with your child with autism? BMJ---Additional information on MMR booster shot---case>Date: Sun, 14 Mar 2004 02:26:37 -0500>From: Gallup <truegrit@...>http://bmj.bmjjournals.com/cgi/eletters/328/7440/602-c#52948My reply sent out...should be on there soon...........Ray Gallup Founder of The Autism Autoimmunity Project 45 Iroquois Avenue, Lake Hiawatha, NJ 07034 USA Send response to journal: Re: Re: UNRELIABILITY OF SCIENTIFIC PAPERS AS EVIDENCE Email Gallup In response to Clifford G 's "Unreliability of Scientific Papers AsEvidence", Mr. says the following: "At the time of writing, it is being claimed by a US Board CertifiedPaediatrician (6) that the IoM and US Courts accept as proof of causationevidence showing a double reaction, first to the initial MMR inoculationand again followed by a reaction to the booster. " Regarding the MMR booster shot, I have heard from a few parents about theadverse effect of a MMR vaccine booster shot but the most striking case isthe following from Trina Schmits, RN who lives in upstate New York. Our son Tim, who is now 21 has been ill since Spring of 1994 with anundiagnosed neurological condition. His symptoms include optic neuritis,dizziness, muscle weakness ( tongue, jaw and eyes ) and fatigue. Mostalarming has been the deterioration of his cognitive function. Tim had beendiagnosed as autistic when he was two years old and when his cognitivefunction began deteriorating again in 1994 it was like history repeatingitself. When Tim was two he developed encephalitis, perhaps as a result ofan immunization. Prior to that time he had been a happy and alert baby. Atage two he regressed, lost his expressive and receptive language skills anddeveloped autistic features. With intensive intervention Tim recoveredcompletely and by the time he was eight years old, was functioning verywell both academically and socially and was considered completely recovered. In June of 1992 Tim had a measles booster shot. This may or may not besignificant. Two months later, the first of several episodes of severe eyepain and light sensitivity developed, with no diagnosis. There was apattern of increasing fatigue and sensory overload. In the Spring of 1994Tim began to complain of increasing difficulty swallowing. At times hisspeech would sound mushy. During the Fall and Winter Tim's symptoms becameconstant. He was loosing weight due to difficulty swallowing and wassleeping most of the time. His eyes were now misaligned, and he wasdeveloping tremors in his eyes, eyelids, tongue and jaw. He also sufferedfrom intense itching whenever even slightly overheated. He was worked upextensively for multiple sclerosis, myasthenia gravis and mastocytosis, andfelt not to have any of these conditions. In Jan. 1995 Tim was in suchdistress his neurologist gave him a five day course of IV solu-medrol. Hiseye symptoms improved dramatically, as did his cognitive functioning buthis response was short- lived and by June Tim was again in terribledistress from his symptoms. Let me add that to even the most casualobserver, Tim appeared to be very ill. It was then I began researching everything I could find on autism,immunization reactions and demyelinating diseases, hoping I might find acommon thread. Months later a possible common thread did emerge and thatwas an autoimmune process. Independently I read of an environmentalphysician who was treating some cases of early autism with what he called"antigen feeding". I read incredible stories about immunization reactions,and the belief by some researchers that atypical forms of autism areincreasing and that the antibodies to vaccinations are also attacking themyelin. One MD in California reports he is using IVIG to treat selectedcases of autism with success. Because the neuropsychologist who tested Tim believed his test profile wasindicative of an early demyelinating disease, I began to read everything Icould regarding treatments for MS that were available. That was when I readabout Myloral, and antigen desensetization. In August, Tim was doing poorlybut his neurologist wanted to wait until Oct. to do another course ofSolu-medrol. As it turned out this second course never happened. I told Timabout antigen desensitization and he agreed to take Sphingolin, a foodsupplement said to contain myelin basic protein. This was all quite casual,with actually little expectation that it would help. Tim began taking eightcapsules a day on an empty stomach. The first person to notice an astounding difference was the optometristwho has been doing vision training with Tim. All objective measures ofTim's vision had dramatically improved. Tim was sleeping less, and friendswere beginning to remark how much better he looked. The improvementcontinues to this day. The tremors have diminished to a whisper. Tim cannow use his eyes to read for the first time in 2 1/2 years. His slowness inthought and difficulty speaking are completely gone. I am aware that this story regarding Tim proves nothing. We have nodiagnosis. The only tests that are positive are the visual evoked potentialtests and the BAER. His measles antibody titer is also high. Because noregulated product is yet available, we are giving Tim a "food supplement"that is also poorly defined. Not as a scientist, but as a mother let me say with the certainty thatonly a mother can have...Tim's recent illness is the same illness that hehad when he was two. It looks the same, it feels the same. I also know thatTim has been slowly improving since taking Sphingolin. I have worked very hard to help my son and believe this simpleintervention has given Tim back his life. If you could see Tim today and ifyou could have seen him only two months ago, you would understand why thisis potentially such a compelling story. Yours truly, Trina Schmits (Tim's mother) Competing interests: Founder of The Autism Autoimmunity Project and fatherto , who has regressive autism and tested positive for myelin basicprotein antibodies, has elevated measles antibody titers, T-cellabnormalities and colitis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 , I looked up alittle on this. Did you know this is made from the cows spinal cord. That means theres the chance of getting mad cow. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2004 Report Share Posted March 15, 2004 Oh, brother, Just what we need!! Pat K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2009 Report Share Posted July 13, 2009 Have tried it in past, Tom not on it at present. Read your megahydrate info - have you tried it? Results? Gail > > Does anybody use this? > > Mandi x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2009 Report Share Posted July 13, 2009 Mandi, Tried in the past but did not do much, perhaps incremental benefits. Health must be in good shape to see clear gains for me, a clear gut and heavy metal free body. Just my opinion Ann > > Does anybody use this? > > Mandi x > Quote Link to comment Share on other sites More sharing options...
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