Guest guest Posted June 29, 2010 Report Share Posted June 29, 2010 Wish it were that simple. Only smoked briefly 30 years ago; have always eaten healthily (albeit a spell of vegetarianism which led to overuse of soya); but CCSVI I agree with (I hope! - I'm down for treatment at the end of the year). Good luck next month. Am looking forward to hearing the sesults. Janet > To: mscured > From: rachael.m.thomas@... > Date: Wed, 30 Jun 2010 05:13:52 +0930 > Subject: RE: Re: CSSVI treatment > > > Diet, smoking and CCSVI = 'MS' > > > > That's just MY opinion > > > > Counting down to the 9th....keeping my fingers Xd that my veins are absolutely buggered!! > > > > _________________________________________________________________ Hotmail: Trusted email with Microsoft’s powerful SPAM protection. https://signup.live.com/signup.aspx?id=60969 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2010 Report Share Posted July 1, 2010 how can you prove your ms was directly caused by Hep B shots? I had Hep B shot, too. I used to work in health care and they were required for my job. But, I also know I had my first MS symptom when I was 14 or so, a good 4 years before my first Hep B shot. I guess I'm just wondering how anybody can claim to undoubtedly prove Hep B shots are a direct cause of MS. Especially when, at least here in the U.S kids are subjected to so many immunizations. Any one of those shots can wreak havoc on the immune system and encourage MS I'm not questioning that it's possible. Personally I believe childhood immunizations cause a lot of unintended health problems, MS, Autism, and possibly CFS and Fibro included. My question is why do you think it's the Hep B series, specifically? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 I know it was caused by it. I had a fairly quick reaction. Fever within a hour or two. Fever that lasted through the whole series day in and out. Neurological symptoms started that I never had before. I don't doubt it was caused by it. As to proving it, I went to lots of docs, so there is documentation to back it up. ________________________________ To: mscured Sent: Thu, July 1, 2010 2:29:07 PM Subject: Re: Re: CSSVI treatment  how can you prove your ms was directly caused by Hep B shots? I had Hep B shot, too. I used to work in health care and they were required for my job. But, I also know I had my first MS symptom when I was 14 or so, a good 4 years before my first Hep B shot. I guess I'm just wondering how anybody can claim to undoubtedly prove Hep B shots are a direct cause of MS. Especially when, at least here in the U.S kids are subjected to so many immunizations. Any one of those shots can wreak havoc on the immune system and encourage MS I'm not questioning that it's possible. Personally I believe childhood immunizations cause a lot of unintended health problems, MS, Autism, and possibly CFS and Fibro included. My question is why do you think it's the Hep B series, specifically? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 I'm not questioning your experience. I completely believe that your MS was caused by your Hep B series. I guess what I'm asking is how your doctors tracked your MS to the hep B series. And what happened to you after the hep B shots-- how did did you link them? Do you know what in the hep b shot caused the problem. Do you think it was mercury, another additive, or the immune response caused by the shot? Yvette On Fri, Jul 2, 2010 at 12:09 PM, joy inspired wrote: > > > I know it was caused by it. I had a fairly quick reaction. Fever within a > hour or two. Fever that lasted through the whole series day in and out. > Neurological symptoms started that I never had before. I don't doubt it was > caused by it. As to proving it, I went to lots of docs, so there is > documentation to back it up. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 Hi, I have been lurking on this group for a while now as somewhat of an interloper! I have a friend whose family has been touched by MS. My son has a condition called developmental dyspraxia and apraxia/dysarthria of speech. He is now 15 and is considered 'recovered', well. mostly. If he had been diagnosed today, he probably would have been labeled as pdd-nos, which is on the austims spectrum. That is my guess. He really is not autistic but the therapies of that 'world' worked for him.... I started reading this board because I wanted to see if the same things that are helping the kids in the autism community were helping all of you. I am overwhelmingly SHOCKED by how similar the stories are to the ASD kids. So.... let me share a few of the things I have learned on my long arduous journey..... and a few of the suspicions I have. Firstly with regards to how we all got here. More and more I believe that the original insult is viral. Whether this may have been due to shots or illness or 'something' you picked up and never really noticed but just started going slowly downhill. At some point there was an 'insult' to the system. It took hold and slowly but surely wended its way in and took over, compromising the immune system and the biochemistry of the body and how it is able to function. The body's ability to make glutathione is compromised. Glutathione is our bodies 'soap' and it cleanses and detoxifies the body. So because we lack the ability to fight off that 'bad guys', they start to invade and take over. We stop tolerating the foods we eat daily and really get worse with sugars and starches (at least in my house! ....everyone is different). Parasites, heavy metals, fungi and bad bacteria take over and further disrupt the body. The body has become a target host for pathogens to take over. But the viruses are nasty! I greatly suspect that they are the start! Let me give you a little history: When my boy was little, he fell down the stairs 4 or 5 days a week. His body was weak and he had extremely low muscle tone. The doctors all told me that he had a neurological condition that he would grow out of because it was non-degenerative but over time, I realized that he had a physical condition. They were wrong. Over time he fell further and further behind his peer groups. He was the child that wasn't growing up and by grade 2 was diagnosed as being borderline mentally handicapped. (but he wasn't, he was sick) It was almost as though he were a stroke patient. We had MRI's done and they all came back clear. While he could speak, his speech was very 'slushy' and his articulation was poor. After almost 10 years of useless system therapy that did little, I began flying him to The National Association of Child Development in Utah. (we are from Canada). The internet was in full swing now and I began learning all I could as I realized that my son was headed for a group home. Finally, I learned about diets, supplements and testing. I had his body completely tested and his results are pretty much the norm in that community. High lead, high mercury, RAGING arsenic levels. He had literally zero EFAs in his system and his methylation pathways (a major player for Vitamin were all messed up. He had almost zero vitamin A in his body, low glutathione, COQ10 and other 'essentials' for life. In essence, his body was starving. He tested having candida, mycotoxic moulds and high levels of bacteria. It was astonishing to see his results. Firstly, I began therapeutic levels of supplementation as well as daily intensive home therapy. He started to gain more and more energy and perk up. He stopped falling down the stairs. One of the reasons why I think that CSSVI treatment might work for you all is that our dyspraxic kids absolutely have oxygenation problems. They often don't oxygenate well. One day my son when he was about 12.5 came home from skiing for an 8 hour stint. His speech was as clear as a bell. I just about fell over. It only lasted a couple of days but now I learned that there was some type of relationship between oxygen to the brain or blood flow to the brain and his condition. This is why HBOT works so effectively on some. At NACD (National Association of Child Development), they do a therapy called 'masking' where you actually place a plastic bag over the childs mouth and nose and have them breath in the CO2 for about a minute. When you remove the mask, the 'gasp' reflex is invoked and the child has a major 'gasp' of breathe. This exercise increases the carteroid artery (think that's what its called, ....just a mom, not a doc ) which over time, is supposed to increase the blood/oxygen flow to the brain. This is a tough exercise to do to get results and it takes a long, long time. You have to do it about 20 times a day (almost a full time job) and we did it faithfully for about a month before I gave it up. But.... in that time, my boy's face did fill out substantially and he lost that greyish pallor he carried around. Today, I have my boy running every single day to maintain his oxygenation. I understand that this is not necessarily 'great' for you guys though.... and can cause flares. Okay.... trying not to bore you.... But here is another thing that I learned which may or may not be beneficial to you guys..... I learned that if you want to 'fix' a problem, you need to address it with supplementation, diet and therapy. For instance,..... at NACD, they told me that my son had zero 'feeling' in his limbs which really helped explain his lack of motor control and why he was always getting hurt. They had me do deep pressure on his fingers, hands, arms; toes, feet and legs twice daily. When you do deep pressure, you actually need to press hard enough so that it hurts (reaching the pain threshold) because this stimulates the connections between the limb and the brain in an 'intense' manner. After 3 months, we were able to normalize his sense of touch. Now, there are other kids who use 'brushing' to go the other way. They are over sensitive and brushing helps to desensitize the limbs. I don't know this would help any of you guys but I have wondered in reading your posts complaining of numbness. My son lived a life of numb..... everywhere (mouth, face, lips.... everything) but we were able to bring him back. I know he has nerve damage. Now the vitamin Benfotiamine is helpful for peripheral neuropathy so it may be one for some of you to look into. We have been chelating for almost 3 years now and combined with supplementation, eradicating the yeasts from his body and pumping him full of probiotics while watching his diet has changed his life. He went from being a special education 'lifer' to finishing grade 9 this year with a 74% average and is a happy, witty, and interesting guy. We chelated using oral DMSA and Ala under the supervision of an environmental doctor. First, the lead came pouring out of him and the difference to his IQ, his speech and his life skills were immediate and amazing. My son started taking public transit independently within the first two weeks of chelating and his speech articulation issues cleared substantially. (I understand that lead also has a very numbing affect on the body?) After lead came arsenic. He had arsenic levels that were absolutely toxic. There is a relationship between arsenic and diabetes and he was registering as diabetic on fasting blood glucose tests. After we pulled the arsenic, he had heaps of energy, no more highs and lows and blood glucose tests have registered as normal ever since. Today, we continue to work on mercury. Mercury is very slow moving and my hope is that once it is gone, that some of the fine motor function he has lost will be restored. Mercury also affects the eyes I understand, so I am hopeful that his hyper-peripheral vision fade more as well. This is our experience. I hope that in some small way, it can help your group as well. We don't use as many supplements either. Not everyone can tolerate DMSA! You have to know this. You must be excreting (no constipation issues/urine issues) to chelate well. You must be able to tolerate sulpher products. Not everyone can and not everyone is a good excretor. But one of the great side benefits of DMSA if tolerated is it's ability to normalize glutathione levels. It does this for people who use it for even a short time from the studies I have read. Lots of people have differing viewpoints as to the 'best' way to chelate. My opinion is this: we are all unique. If you have heavy metals, you need to get them out of the body or get sicker and sicker. You need to get them out in the best way that works for YOU... Let you body be your guide. Diet: we spent a long time on special diets. Today, my boy can eat normally but he really has to watch out. High fructose corn syrup is absolute poison and takes out his speech in 20 minutes. (disgusting stuff, imo) MSG: if we go travelling and eat in restaurants, MSG takes out his speech after 3 days. He doesn't lose all speech; he gets really, really slurry and has a lot of brain fog. I call him our household poison detector. If he eats it and loses speech, then it's poison! Sometimes it's tough. He is a teen and hangs out with his buddies and is 'done' with diets but.... he also wants to feel well too! So, because there can sometimes be a delayed reaction between what his body response to a food (for him this would be a flare) and eating it.... we will often have to back track through a couple of days to find an offending item that he has consumed so that he avoids it in future days. Generally chemicals are a bad idea! This is pretty good because we used to have a long list of foods he couldn't eat. When you first chelate, your body really gets reactive to foods but after about a year of eliminating metals, the food issues begin to fade away and the sensitivities diminish. BUT.... you must have control of the yeast and the pathogens. If you don't, food triggers will be with you forever. The stomach cannot heal with the yeast stirring up trouble and that auto-immune response cannot quiet down. Is the auto-immune still there for us? Yes, I think so. But I think that it is 'sleeping' and we have reached a quiet truce. In addition, chelation tends to cause yeast flares. We used a script of difulcan for 6 months straight to get rid of that darn yeast once and for all. There are naturals you can use but sometimes you do need to get out the big guns. In our case, we had to. We are still fighting bad bacteria in the body and that is why I know we are not quite done yet. Still some mercury, still some bad bacteria and still some. I LOVE dietary enzymes! We used TriEnza made by Houston Neutraceuticals and also Carbo zyme (we couldn't tolerate starches at all) and this allowed my boy to cheat on his diet without reprocussions on many, many occasions. If they work for you, they are a great support. We don't need them anymore but I carry them with me when we travel still.... just in case! A note on supplementing: I learned the expensive way that when you're sick, you need therapeautic levels of supplements. For my kid who had almost no EFA's (neither 3, 6's nor 9's); a pill just wasn't enough. I bought beautiful walnut, coconut, almond, grapeseed oils from the store and poured them into him. I would sprinkle a tad on every meal. Another example: All of the other moms were reporting a restoration of good vision using Cod liver oil. Not me. I gave it for about a year before giving up. Finally, I learned that what I was giving was just not enough to see any benefit. I bought some beautiful fermented Cod Liver Oil from Greenpastures (can only order it online) and started him on high doses. Within two months, he had beautiful eye contact and that blank look went away never to return. A miracle! Don't underestimate the power of a good supplement. Vitamin B12 shots are a wonderdrug for many. I have seen people who were really incapacited due to lyme disease discover remarkeable healing just using B12. But... Get your labs! Find a good alternative specialist and get the blood, urine and stool work complete. Labs are expensive but they give a roadmap of your body and his unique deficiencies. This roadmap will last about 1.5 years and when you do them again, you can see your progress. If you don't know where you are going, how will you get there? Until I spent money on labs, I really didn't know what I was doing. Antioxidents: when you have auto immune, you have a body on fire! Literally! High dose vitamin C, vitamin E, EFA's are a staple for us. There are some that advocate ramping up vitamin C (buffered powder is easiest) to the point where it causes diarhea and then tapering down to normal BM and that would be considered your daily dose. You need plenty antioxidents to quiet the flames of oxidative stress in the body..... I believe that to travel down this road is to need a coach at your side. There is no way my boy had he been an adult could have done this on his own. When his brain was at its foggiest and he was disoriented, his body at its weakest, I was his pill counter, his physio therapist, his speech therapist and the person who reviewed and analyzed all of his labwork. Natural viral fighters that I know about: high dose vitamin A, lysine, lauricidin (tastes aweful), valtrex (script). When you fight viruses in the body, the body tends to produce yeast flares so you need to be on a good yeast protocol. Probiotics can really cost u a fortune after a while. Really good ways of getting good bacteria into the system is through fermentation. Fermented veggies, fermented kefir are wonderful methods. The body ecology diet website sells easy starter packets but you can also go to places like iherb.com for starters as well. For those who can tolerate milk (we avoid it as it congests my boys hearing/balance/vestibular system and use almond milk), the Specific Carbohydrate diet (pecanbread website) which works wonderfully for people with Chrons as well as the ASD kids has a wonderful 24 hour yogurt that is chalk full of good bacteria. One of the things that I have found was this: every time you turn around someone has another 'therapy' that is going to pull $5,000 from your pocket to their pocket. There are a lot of people selling hope. Do your research. AND what helps your best friend with MS may not help you and vice versa. These conditions seem similar and yet are sometimes very different. On the Autism.com website, there is a parent survey listing different therapies that parents used and their effectiveness for their child. I just went down that list and everything that had a 70% or more, I tried out! And guess what, my kid is pretty average because those were the things that worked on him too! Perhaps you guys might want to start different lists using that one as a start? Okay. So I hope that my little forray into your world will not cause you upset. I felt that I should share that what you are all doing seems to be what is working for others too. My story is much longer then the above so I hope that I have made some sense in telling you my condensed version. My son had an incurable condition but he has recovered from it. It kind of comes back in little 'flares' here and there and I will always be on guard for the auto-immune side to take root in a different illness. (like crones?) We both are always on guard for constipation because that is always the 'start' of a regression. Don't know if it works that way for you all too? Again, we are all unique. It has taken a lot of work and a lot of research and ALL his college savings! But, he came back from a school trip from France a couple of months ago with a smile on his face and presents in his luggage. He will not go to a group home and I'll come up with that University tuition some how! What got me through? Going to bed every night and seeing my son, healthy.... with a strong body, clear speech and coordinated limbs. I held on to that vision with every thing I had and kept it in my heart as I researched through the night and counted vitamins all day. Every one said that he would never be where he is today..... but he is. A miracle or hard work? ....maybe a lot of both. I wish you all the very best and I hope that in some small way, my journey can contribute to yours. Sincerely, Janice From: joy inspired Sent: Friday, July 02, 2010 11:09 AM To: mscured Subject: Re: Re: CSSVI treatment I know it was caused by it. I had a fairly quick reaction. Fever within a hour or two. Fever that lasted through the whole series day in and out. Neurological symptoms started that I never had before. I don't doubt it was caused by it. As to proving it, I went to lots of docs, so there is documentation to back it up. ________________________________ To: mscured Sent: Thu, July 1, 2010 2:29:07 PM Subject: Re: Re: CSSVI treatment how can you prove your ms was directly caused by Hep B shots? I had Hep B shot, too. I used to work in health care and they were required for my job. But, I also know I had my first MS symptom when I was 14 or so, a good 4 years before my first Hep B shot. I guess I'm just wondering how anybody can claim to undoubtedly prove Hep B shots are a direct cause of MS. Especially when, at least here in the U.S kids are subjected to so many immunizations. Any one of those shots can wreak havoc on the immune system and encourage MS I'm not questioning that it's possible. Personally I believe childhood immunizations cause a lot of unintended health problems, MS, Autism, and possibly CFS and Fibro included. My question is why do you think it's the Hep B series, specifically? 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Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 Hi Janice, and welcome. As the majority of us on this site have MS which invariably comes with fatigue, eye problems and confusion/memory lapses it is difficult to concentrate on long e-mails. I am sure your son's story has many lessons to give us but unfortunately I feel it might get parked in the " one day when I have stamina " file. If there are any points which you feel we should know NOW can you please give us one or two bullet points. Many thanks. Janet To: mscured From: jscott@... Date: Fri, 2 Jul 2010 13:32:50 -0600 Subject: Re: Re: CSSVI treatment Hi, I have been lurking on this group for a while now as somewhat of an interloper! I have a friend whose family has been touched by MS. My son has a condition called developmental dyspraxia and apraxia/dysarthria of speech. He is now 15 and is considered 'recovered', well. mostly. If he had been diagnosed today, he probably would have been labeled as pdd-nos, which is on the austims spectrum. That is my guess. He really is not autistic but the therapies of that 'world' worked for him.... I started reading this board because I wanted to see if the same things that are helping the kids in the autism community were helping all of you. I am overwhelmingly SHOCKED by how similar the stories are to the ASD kids. So.... let me share a few of the things I have learned on my long arduous journey..... and a few of the suspicions I have. Firstly with regards to how we all got here. More and more I believe that the original insult is viral. Whether this may have been due to shots or illness or 'something' you picked up and never really noticed but just started going slowly downhill. At some point there was an 'insult' to the system. It took hold and slowly but surely wended its way in and took over, compromising the immune system and the biochemistry of the body and how it is able to function. The body's ability to make glutathione is compromised. Glutathione is our bodies 'soap' and it cleanses and detoxifies the body. So because we lack the ability to fight off that 'bad guys', they start to invade and take over. We stop tolerating the foods we eat daily and really get worse with sugars and starches (at least in my house! ....everyone is different). Parasites, heavy metals, fungi and bad bacteria take over and further disrupt the body. The body has become a target host for pathogens to take over. But the viruses are nasty! I greatly suspect that they are the start! Let me give you a little history: When my boy was little, he fell down the stairs 4 or 5 days a week. His body was weak and he had extremely low muscle tone. The doctors all told me that he had a neurological condition that he would grow out of because it was non-degenerative but over time, I realized that he had a physical condition. They were wrong. Over time he fell further and further behind his peer groups. He was the child that wasn't growing up and by grade 2 was diagnosed as being borderline mentally handicapped. (but he wasn't, he was sick) It was almost as though he were a stroke patient. We had MRI's done and they all came back clear. While he could speak, his speech was very 'slushy' and his articulation was poor. After almost 10 years of useless system therapy that did little, I began flying him to The National Association of Child Development in Utah. (we are from Canada). The internet was in full swing now and I began learning all I could as I realized that my son was headed for a group home. Finally, I learned about diets, supplements and testing. I had his body completely tested and his results are pretty much the norm in that community. High lead, high mercury, RAGING arsenic levels. He had literally zero EFAs in his system and his methylation pathways (a major player for Vitamin were all messed up. He had almost zero vitamin A in his body, low glutathione, COQ10 and other 'essentials' for life. In essence, his body was starving. He tested having candida, mycotoxic moulds and high levels of bacteria. It was astonishing to see his results. Firstly, I began therapeutic levels of supplementation as well as daily intensive home therapy. He started to gain more and more energy and perk up. He stopped falling down the stairs. One of the reasons why I think that CSSVI treatment might work for you all is that our dyspraxic kids absolutely have oxygenation problems. They often don't oxygenate well. One day my son when he was about 12.5 came home from skiing for an 8 hour stint. His speech was as clear as a bell. I just about fell over. It only lasted a couple of days but now I learned that there was some type of relationship between oxygen to the brain or blood flow to the brain and his condition. This is why HBOT works so effectively on some. At NACD (National Association of Child Development), they do a therapy called 'masking' where you actually place a plastic bag over the childs mouth and nose and have them breath in the CO2 for about a minute. When you remove the mask, the 'gasp' reflex is invoked and the child has a major 'gasp' of breathe. This exercise increases the carteroid artery (think that's what its called, ....just a mom, not a doc ) which over time, is supposed to increase the blood/oxygen flow to the brain. This is a tough exercise to do to get results and it takes a long, long time. You have to do it about 20 times a day (almost a full time job) and we did it faithfully for about a month before I gave it up. But.... in that time, my boy's face did fill out substantially and he lost that greyish pallor he carried around. Today, I have my boy running every single day to maintain his oxygenation. I understand that this is not necessarily 'great' for you guys though.... and can cause flares. Okay.... trying not to bore you.... But here is another thing that I learned which may or may not be beneficial to you guys..... I learned that if you want to 'fix' a problem, you need to address it with supplementation, diet and therapy. For instance,..... at NACD, they told me that my son had zero 'feeling' in his limbs which really helped explain his lack of motor control and why he was always getting hurt. They had me do deep pressure on his fingers, hands, arms; toes, feet and legs twice daily. When you do deep pressure, you actually need to press hard enough so that it hurts (reaching the pain threshold) because this stimulates the connections between the limb and the brain in an 'intense' manner. After 3 months, we were able to normalize his sense of touch. Now, there are other kids who use 'brushing' to go the other way. They are over sensitive and brushing helps to desensitize the limbs. I don't know this would help any of you guys but I have wondered in reading your posts complaining of numbness. My son lived a life of numb..... everywhere (mouth, face, lips.... everything) but we were able to bring him back. I know he has nerve damage. Now the vitamin Benfotiamine is helpful for peripheral neuropathy so it may be one for some of you to look into. We have been chelating for almost 3 years now and combined with supplementation, eradicating the yeasts from his body and pumping him full of probiotics while watching his diet has changed his life. He went from being a special education 'lifer' to finishing grade 9 this year with a 74% average and is a happy, witty, and interesting guy. We chelated using oral DMSA and Ala under the supervision of an environmental doctor. First, the lead came pouring out of him and the difference to his IQ, his speech and his life skills were immediate and amazing. My son started taking public transit independently within the first two weeks of chelating and his speech articulation issues cleared substantially. (I understand that lead also has a very numbing affect on the body?) After lead came arsenic. He had arsenic levels that were absolutely toxic. There is a relationship between arsenic and diabetes and he was registering as diabetic on fasting blood glucose tests. After we pulled the arsenic, he had heaps of energy, no more highs and lows and blood glucose tests have registered as normal ever since. Today, we continue to work on mercury. Mercury is very slow moving and my hope is that once it is gone, that some of the fine motor function he has lost will be restored. Mercury also affects the eyes I understand, so I am hopeful that his hyper-peripheral vision fade more as well. This is our experience. I hope that in some small way, it can help your group as well. We don't use as many supplements either. Not everyone can tolerate DMSA! You have to know this. You must be excreting (no constipation issues/urine issues) to chelate well. You must be able to tolerate sulpher products. Not everyone can and not everyone is a good excretor. But one of the great side benefits of DMSA if tolerated is it's ability to normalize glutathione levels. It does this for people who use it for even a short time from the studies I have read. Lots of people have differing viewpoints as to the 'best' way to chelate. My opinion is this: we are all unique. If you have heavy metals, you need to get them out of the body or get sicker and sicker. You need to get them out in the best way that works for YOU... Let you body be your guide. Diet: we spent a long time on special diets. Today, my boy can eat normally but he really has to watch out. High fructose corn syrup is absolute poison and takes out his speech in 20 minutes. (disgusting stuff, imo) MSG: if we go travelling and eat in restaurants, MSG takes out his speech after 3 days. He doesn't lose all speech; he gets really, really slurry and has a lot of brain fog. I call him our household poison detector. If he eats it and loses speech, then it's poison! Sometimes it's tough. He is a teen and hangs out with his buddies and is 'done' with diets but.... he also wants to feel well too! So, because there can sometimes be a delayed reaction between what his body response to a food (for him this would be a flare) and eating it.... we will often have to back track through a couple of days to find an offending item that he has consumed so that he avoids it in future days. Generally chemicals are a bad idea! This is pretty good because we used to have a long list of foods he couldn't eat. When you first chelate, your body really gets reactive to foods but after about a year of eliminating metals, the food issues begin to fade away and the sensitivities diminish. BUT.... you must have control of the yeast and the pathogens. If you don't, food triggers will be with you forever. The stomach cannot heal with the yeast stirring up trouble and that auto-immune response cannot quiet down. Is the auto-immune still there for us? Yes, I think so. But I think that it is 'sleeping' and we have reached a quiet truce. In addition, chelation tends to cause yeast flares. We used a script of difulcan for 6 months straight to get rid of that darn yeast once and for all. There are naturals you can use but sometimes you do need to get out the big guns. In our case, we had to. We are still fighting bad bacteria in the body and that is why I know we are not quite done yet. Still some mercury, still some bad bacteria and still some. I LOVE dietary enzymes! We used TriEnza made by Houston Neutraceuticals and also Carbo zyme (we couldn't tolerate starches at all) and this allowed my boy to cheat on his diet without reprocussions on many, many occasions. If they work for you, they are a great support. We don't need them anymore but I carry them with me when we travel still.... just in case! A note on supplementing: I learned the expensive way that when you're sick, you need therapeautic levels of supplements. For my kid who had almost no EFA's (neither 3, 6's nor 9's); a pill just wasn't enough. I bought beautiful walnut, coconut, almond, grapeseed oils from the store and poured them into him. I would sprinkle a tad on every meal. Another example: All of the other moms were reporting a restoration of good vision using Cod liver oil. Not me. I gave it for about a year before giving up. Finally, I learned that what I was giving was just not enough to see any benefit. I bought some beautiful fermented Cod Liver Oil from Greenpastures (can only order it online) and started him on high doses. Within two months, he had beautiful eye contact and that blank look went away never to return. A miracle! Don't underestimate the power of a good supplement. Vitamin B12 shots are a wonderdrug for many. I have seen people who were really incapacited due to lyme disease discover remarkeable healing just using B12. But... Get your labs! Find a good alternative specialist and get the blood, urine and stool work complete. Labs are expensive but they give a roadmap of your body and his unique deficiencies. This roadmap will last about 1.5 years and when you do them again, you can see your progress. If you don't know where you are going, how will you get there? Until I spent money on labs, I really didn't know what I was doing. Antioxidents: when you have auto immune, you have a body on fire! Literally! High dose vitamin C, vitamin E, EFA's are a staple for us. There are some that advocate ramping up vitamin C (buffered powder is easiest) to the point where it causes diarhea and then tapering down to normal BM and that would be considered your daily dose. You need plenty antioxidents to quiet the flames of oxidative stress in the body..... I believe that to travel down this road is to need a coach at your side. There is no way my boy had he been an adult could have done this on his own. When his brain was at its foggiest and he was disoriented, his body at its weakest, I was his pill counter, his physio therapist, his speech therapist and the person who reviewed and analyzed all of his labwork. Natural viral fighters that I know about: high dose vitamin A, lysine, lauricidin (tastes aweful), valtrex (script). When you fight viruses in the body, the body tends to produce yeast flares so you need to be on a good yeast protocol. Probiotics can really cost u a fortune after a while. Really good ways of getting good bacteria into the system is through fermentation. Fermented veggies, fermented kefir are wonderful methods. The body ecology diet website sells easy starter packets but you can also go to places like iherb.com for starters as well. For those who can tolerate milk (we avoid it as it congests my boys hearing/balance/vestibular system and use almond milk), the Specific Carbohydrate diet (pecanbread website) which works wonderfully for people with Chrons as well as the ASD kids has a wonderful 24 hour yogurt that is chalk full of good bacteria. One of the things that I have found was this: every time you turn around someone has another 'therapy' that is going to pull $5,000 from your pocket to their pocket. There are a lot of people selling hope. Do your research. AND what helps your best friend with MS may not help you and vice versa. These conditions seem similar and yet are sometimes very different. On the Autism.com website, there is a parent survey listing different therapies that parents used and their effectiveness for their child. I just went down that list and everything that had a 70% or more, I tried out! And guess what, my kid is pretty average because those were the things that worked on him too! Perhaps you guys might want to start different lists using that one as a start? Okay. So I hope that my little forray into your world will not cause you upset. I felt that I should share that what you are all doing seems to be what is working for others too. My story is much longer then the above so I hope that I have made some sense in telling you my condensed version. My son had an incurable condition but he has recovered from it. It kind of comes back in little 'flares' here and there and I will always be on guard for the auto-immune side to take root in a different illness. (like crones?) We both are always on guard for constipation because that is always the 'start' of a regression. Don't know if it works that way for you all too? Again, we are all unique. It has taken a lot of work and a lot of research and ALL his college savings! But, he came back from a school trip from France a couple of months ago with a smile on his face and presents in his luggage. He will not go to a group home and I'll come up with that University tuition some how! What got me through? Going to bed every night and seeing my son, healthy.... with a strong body, clear speech and coordinated limbs. I held on to that vision with every thing I had and kept it in my heart as I researched through the night and counted vitamins all day. Every one said that he would never be where he is today..... but he is. A miracle or hard work? ....maybe a lot of both. I wish you all the very best and I hope that in some small way, my journey can contribute to yours. Sincerely, Janice From: joy inspired Sent: Friday, July 02, 2010 11:09 AM To: mscured Subject: Re: Re: CSSVI treatment I know it was caused by it. I had a fairly quick reaction. Fever within a hour or two. Fever that lasted through the whole series day in and out. Neurological symptoms started that I never had before. I don't doubt it was caused by it. As to proving it, I went to lots of docs, so there is documentation to back it up. ________________________________ To: mscured Sent: Thu, July 1, 2010 2:29:07 PM Subject: Re: Re: CSSVI treatment how can you prove your ms was directly caused by Hep B shots? I had Hep B shot, too. I used to work in health care and they were required for my job. But, I also know I had my first MS symptom when I was 14 or so, a good 4 years before my first Hep B shot. I guess I'm just wondering how anybody can claim to undoubtedly prove Hep B shots are a direct cause of MS. Especially when, at least here in the U.S kids are subjected to so many immunizations. Any one of those shots can wreak havoc on the immune system and encourage MS I'm not questioning that it's possible. Personally I believe childhood immunizations cause a lot of unintended health problems, MS, Autism, and possibly CFS and Fibro included. My question is why do you think it's the Hep B series, specifically? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 Okay, let me try again. Things I have learned (what has helped with what in my household) Allergic reaction and flares: high dose vitamin C, vitamin E, epsom salts baths, Tri Salts Antioxidents: anyone with auto immune needs to take lots of antioxidents. Those are vitamins C, E, and essential fatty acids. The brain is on fire. The body is on fire. This is called oxidative stress and antioxidants are needed to put out the fire. Fatigue: EFA's (3-6-9 oils), high dose COQ10, carnitine, consumption of nuts in the mid afternoon (3 pm blues); some find B12 shots or MB12 shots to be wonderful for energy levels. Chelation of arsenic from the body helped us normalize energy levels permanently. Vision: High dose vitamin A. Best source: Greenpastures Cod Liver Oil. We do 25,000 IU of vitamin A every day wth vitamin D of 5,000 IU. Bilberry also helps with vision Brain Fog and balance: removal of milk products often helps; chelation of lead from the body. Acupuncture: We did an allergy technique called Sensitivity Reduction Technique which is a form of acupuncture. I don't quite know what it did but my son's entire body got strengthened and any flares were dramatically reduced. It wasn't expensive and the results were wonderful for him. Testing: Labs help you to specifically identify which areas you are deficient. Without a roadmap to where you are going, it is tough to get there. Alternative specialists can get great labs that will pinpoint areas of deficiency and help feel better. It generally takes about 2-3 months of therapeutic supplementation in a nutrient to bring normalize deficient body stores. We used an environmental specialist and are so grateful to him. We needed to address metals in the body, pathogens like candida, fungus, parasites and bad bacteria as root causes of our condition. Once we did this, the auto-immune died down, the food reactions faded, the body had a chance to heal. Chelation saved my boy. Removing the lead restored his memory, removing the arsenic restored his energy and removing the mercury (in progress) has been helpful for fine motor. I am hoping that getting it all out will help his eyes too. I believe that CSSVI treatments might help. The first time I ever heard my son speak clearly without chelation was after he had been skiing for 8 hours straight. Didn't last but it was a miracle. LOTS of oxygen. I believe that he was not getting enough blood flow and oxygen to his body or his brain. Over time, I also have come to believe that most of these auto immune issues begin with a viral assault; whether it was via vaccines, some unseen virus a person has picked up or a illness like strep or chicken pox. The virus causes damage depending on where it lands and a cascade of chain reactions occur that reduce the body's ability to detoxify metals and battle pathogens like yeast and bad bacteria. Slowly, the body gets taken over. Everyone is individual and unique. What helps one, may not help another..... [is this better?] Janice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 Okay, let me try again. Things I have learned (what has helped with what in my household) Allergic reaction and flares: high dose vitamin C, vitamin E, epsom salts baths, Tri Salts Antioxidents: anyone with auto immune needs to take lots of antioxidents. Those are vitamins C, E, and essential fatty acids. The brain is on fire. The body is on fire. This is called oxidative stress and antioxidants are needed to put out the fire. Fatigue: EFA's (3-6-9 oils), high dose COQ10, carnitine, consumption of nuts in the mid afternoon (3 pm blues); some find B12 shots or MB12 shots to be wonderful for energy levels. Chelation of arsenic from the body helped us normalize energy levels permanently. Vision: High dose vitamin A. Best source: Greenpastures Cod Liver Oil. We do 25,000 IU of vitamin A every day wth vitamin D of 5,000 IU. Bilberry also helps with vision Brain Fog and balance: removal of milk products often helps; chelation of lead from the body. Acupuncture: We did an allergy technique called Sensitivity Reduction Technique which is a form of acupuncture. I don't quite know what it did but my son's entire body got strengthened and any flares were dramatically reduced. It wasn't expensive and the results were wonderful for him. Testing: Labs help you to specifically identify which areas you are deficient. Without a roadmap to where you are going, it is tough to get there. Alternative specialists can get great labs that will pinpoint areas of deficiency and help feel better. It generally takes about 2-3 months of therapeutic supplementation in a nutrient to bring normalize deficient body stores. We used an environmental specialist and are so grateful to him. We needed to address metals in the body, pathogens like candida, fungus, parasites and bad bacteria as root causes of our condition. Once we did this, the auto-immune died down, the food reactions faded, the body had a chance to heal. Chelation saved my boy. Removing the lead restored his memory, removing the arsenic restored his energy and removing the mercury (in progress) has been helpful for fine motor. I am hoping that getting it all out will help his eyes too. I believe that CSSVI treatments might help. The first time I ever heard my son speak clearly without chelation was after he had been skiing for 8 hours straight. Didn't last but it was a miracle. LOTS of oxygen. I believe that he was not getting enough blood flow and oxygen to his body or his brain. Over time, I also have come to believe that most of these auto immune issues begin with a viral assault; whether it was via vaccines, some unseen virus a person has picked up or a illness like strep or chicken pox. The virus causes damage depending on where it lands and a cascade of chain reactions occur that reduce the body's ability to detoxify metals and battle pathogens like yeast and bad bacteria. Slowly, the body gets taken over. Everyone is individual and unique. What helps one, may not help another..... [is this better?] Janice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 Thanks Janice. Impressive story and wish him all the best. Verily, with hardship comes ease. On Fri, Jul 2, 2010 at 3:32 PM, Janice Hoover wrote: > > > Hi, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2010 Report Share Posted July 4, 2010 Thanks again Janice. This list is neat. bilal -- Verily, with hardship comes ease. On Fri, Jul 2, 2010 at 7:35 PM, Janice Hoover wrote: > > > Okay, let me try again. > > Things I have learned (what has helped with what in my household) > > Allergic reaction and flares: high dose vitamin C, vitamin E, epsom salts > baths, Tri Salts > > Antioxidents: anyone with auto immune needs to take lots of antioxidents. > Those are vitamins C, E, and essential fatty acids. The brain is on fire. > The body is on fire. This is called oxidative stress and antioxidants are > needed to put out the fire. > > Fatigue: EFA's (3-6-9 oils), high dose COQ10, carnitine, consumption of > nuts in the mid afternoon (3 pm blues); some find B12 shots or MB12 shots > to > be wonderful for energy levels. Chelation of arsenic from the body helped > us normalize energy levels permanently. > > Vision: High dose vitamin A. Best source: Greenpastures Cod Liver Oil. > We do 25,000 IU of vitamin A every day wth vitamin D of 5,000 IU. Bilberry > also helps with vision > > Brain Fog and balance: removal of milk products often helps; chelation of > lead from the body. > > Acupuncture: We did an allergy technique called Sensitivity Reduction > Technique which is a form of acupuncture. I don't quite know what it did > but my son's entire body got strengthened and any flares were dramatically > reduced. It wasn't expensive and the results were wonderful for him. > > Testing: Labs help you to specifically identify which areas you are > deficient. Without a roadmap to where you are going, it is tough to get > there. Alternative specialists can get great labs that will pinpoint areas > of deficiency and help feel better. It generally takes about 2-3 months of > therapeutic supplementation in a nutrient to bring normalize deficient body > > stores. We used an environmental specialist and are so grateful to him. > > We needed to address metals in the body, pathogens like candida, fungus, > parasites and bad bacteria as root causes of our condition. Once we did > this, the auto-immune died down, the food reactions faded, the body had a > chance to heal. > > Chelation saved my boy. Removing the lead restored his memory, removing the > > arsenic restored his energy and removing the mercury (in progress) has been > > helpful for fine motor. I am hoping that getting it all out will help his > eyes too. > > I believe that CSSVI treatments might help. The first time I ever heard my > son speak clearly without chelation was after he had been skiing for 8 > hours > straight. Didn't last but it was a miracle. LOTS of oxygen. I believe > that he was not getting enough blood flow and oxygen to his body or his > brain. > > Over time, I also have come to believe that most of these auto immune > issues > begin with a viral assault; whether it was via vaccines, some unseen virus > a > person has picked up or a illness like strep or chicken pox. The virus > causes damage depending on where it lands and a cascade of chain reactions > occur that reduce the body's ability to detoxify metals and battle > pathogens > like yeast and bad bacteria. Slowly, the body gets taken over. > > Everyone is individual and unique. What helps one, may not help > another..... > > [is this better?] > > Janice > > Quote Link to comment Share on other sites More sharing options...
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