Guest guest Posted March 5, 2000 Report Share Posted March 5, 2000 In a message dated 3/5/00 1:29:59 AM Eastern Standard Time, lyme-aidonelist writes: << I was just wondering if this had anything to do with the brain swelling segment that I saw on Dateline. The woman suffered for years with a Lyme looking illness then found out about the chiari/tonsil type swelling of the brain. She had surgery to remove some of her skull and give the brain room and the CSF was able to flow freely and voila! She was cured. My brain/neck often feels like it is swollen in that area (top of neck/base of skull). Sorry if this is written poorly. Really tired today. >> Hi Kathleen, This is really interesting that you brought this up. On my first MRI ( before Lyme DX) it said that there was a slight chiari malformation, but the radiologist said that it was w/in normal ( whatever normal is). This is also the area that I have a lot of problems with. Since so many other parts of our bodies have inflamation, I wonder if the Lyme could cause inflamation of this area and thus the problems with the neck pain we experience (esp. if this is a " tonsil " so to speak). Just one more piece of the puzzle, I guess. Thank you for bringing the subject up. Your Lyme Friend, in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2000 Report Share Posted March 5, 2000 Hi, People dx'ed with CFS also have ended up with Chiari, had surgery and were cured. DOc has to know enough to look for it however. If this is causing problems it is worth puuseing. Chrisite >From: BBHMM@... > >In a message dated 3/5/00 1:29:59 AM Eastern Standard Time, >lyme-aidonelist writes: > ><< I was just wondering if this had anything to do with the brain swelling > segment that I saw on Dateline. The woman suffered for years with a Lyme > looking illness then found out about the chiari/tonsil type swelling of the > brain. She had surgery to remove some of her skull and give the brain room > and the CSF was able to flow freely and voila! She was cured. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2000 Report Share Posted March 5, 2000 Hi, People dx'ed with CFS also have ended up with Chiari, had surgery and were cured. DOc has to know enough to look for it however. If this is causing problems it is worth puuseing. Chrisite >From: BBHMM@... > >In a message dated 3/5/00 1:29:59 AM Eastern Standard Time, >lyme-aidonelist writes: > ><< I was just wondering if this had anything to do with the brain swelling > segment that I saw on Dateline. The woman suffered for years with a Lyme > looking illness then found out about the chiari/tonsil type swelling of the > brain. She had surgery to remove some of her skull and give the brain room > and the CSF was able to flow freely and voila! She was cured. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2000 Report Share Posted March 6, 2000 In a message dated 00-03-05 13:43:26 EST, you write: << People dx'ed with CFS also have ended up with Chiari, had surgery and were cured. DOc has to know enough to look for it however. If this is causing problems it is worth puuseing. Chrisite >> Hi Christie & All, When daughter was misdxd with POTS (garbage can dx!), we learned of a doc - I think in MO that specializes in looking for chiari on MRIs. If anyone needs info, let me know, I'll get it to you. (This is not a lyme doc - just a specialist, I believe, who reads tests & looks for this disorder.) Blessings & velcros, Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2000 Report Share Posted March 6, 2000 Christie, Where did you find the information : " People dx'ed with CFS also have ended up with Chiari " . I have been dx'd with CFS and my husband and I watched the show about it and both went " ah ha " , maybe we should look into this. I have many of the symptoms, but only since having Lyme. I've never had an MRI but am trying to get one due to so many neuro problems. I would like to take this info to my LLMD but need to back it up with references or he won't even consider it as a possibility. Thanks Vicki, Md ><< > People dx'ed with CFS also have ended up with Chiari, had surgery and were > cured. DOc has to know enough to look for it however. If this is causing > problems it is worth puuseing. Chrisite > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2001 Report Share Posted April 10, 2001 Because most of us are TO BUSY FIXING OUR KIDS!!!! The Archieve's are there! READ THEM!!!! laurie > > Message: 22 > Date: Tue, 10 Apr 2001 11:50:20 EDT > From: MMacGregor@... > Subject: Re: Re: ALA only > > Hi > > Sorry, I have to agree with Wayne. Where is this information? Why won't > share with the group? Why is she insisting that we find out for > ourselves? > > I'm sure that chelation would help our daughter, but I need to have solid, > yes, " Scientific " evidence (ie test results) in support of it before DH will > consider it. > So where do I find this information? > > Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2001 Report Share Posted April 10, 2001 I fail to see why we go round and round about all of this. If you chelate the child and urine tests give evidence of mercury, arsenic, lead, etc. then obviously a step forward has occurred. If it fails to change the behaviours, well, there's still so much to do, but having the metals come out of the body is, to me, of utmost relevance in healing anyone. Isn't the proof in the pudding? We're talking about buying DMSA and alpha lipoic acid and giving supportive supplements and then waiting in anticipation for urine test results. If a husband demands to see proof that chelation is worthwhile, I should think a trial period might be warranted in order to get to the point where the proof is leaving the body. Perhaps a compromise could be found in this way? I hear Venus is in high gear and a little sweetness can go a long way with those " DHs " (dear husbands). In my case Lacey's father took her to be vaccinated against my will and I was a columnist advocating the parents forge their children's shot records if they experienced trouble placing them into school. He didn't bother to ask me for proof of why I disallowed further vaccination, so I am thankful your husband is at least interested in examining the issue. Lacey's father went to a pediatrician who claimed she knew all about autism when in fact she most likely only knew autism existed. She said vaccinations were necessary and it would not harm my daughter. Nevermind that by that time an organization called Autism Research Institute had already had enough reports to warrant announcing they felt vaccinations attributed towards autistic symptoms or an organization called Australian Vaccine Awareness Network had been accumulating firsthand horror stories about autistic children being vaccinated. Some idiot pediatrician convinced him Lacey would get diptheria or something and die unless he protected her life. And then she went into partial seizures and grew worse and worse. Lacey's father had to learn the hard way and bears today so much guilt that he wishes he could fall asleep and never wake up. When you run a websearch for " autism +mercury, " there are enough people - parents and doctors, experts and authors, organizations and institutes dealing in autism to see there's some truth to it all and something obviously needs to be done. What I did was to print out those websites and take those to a pediatrician and a neurologist to let them know there might be other people who know more than they do. They were appreciative and plan to support my efforts to chelate Lacey this summer. Perhaps that would be one route you could take? Tell your husband all those other people are suspecting very clearly autism has to do with mercury poisoning and he might not be the best to make an informed decision, so the alternative would be to show it all to an actual doctor so he could at least be offered the opportunity to add his experience and expertise into the equation. It seems the best you can do to convince your husband at this point in time. Just print out all the information and the fact the DAN Protocol is advising chelation now (so the tide has turned) and go to a doctor with your husband to ask his opinion. I'm sure you can print plenty and overwhelm the doctor. In our case the pediatrician has begun to wonder whether or not chelation might be something we all want to do, in light of the fact 300 communities have been found to have arsenic in their waters and a multitude of studies across America have shown children to be poisoned by arsenic in more than 300 communities. Someone is likely manufacturing canned good products or juices made with concentrates or something a 7-year to 10-year-old would come into contact with and it is not just a matter of autistic children ingesting arsenic ... obviously it is nationwide. It's just that we're the only ones checking, isn't it? I feel we're on the brink of explaining autism and have already amassed so many alternatives and therapies we can do to support our children. ly, I think anything that helps an autistic child to get better is going to help anyone in distress. When I printed out 10 websites that claimed mercury poisoning was involved with autism, the doctors were not difficult; they were fascinated. Just hand your debate with the hubby into the hands of a professional who wants to learn how to solve mysteries in health. There are 812 subscribers to this list. That means 812 people are concerned about the " new " link between autism and mercury poisoning. I should say that warrants getting a professional opinion, but sadly, yes, you'll have to take what is available already into the hands of someone who can then lend not only a hand, but will hopefully pass that knowledge onto the people who do not have Internet access and are totally baffled as to what to do for their children. I think we have the right to full disclosure - are those 300 communities endangering the entirety of the country because they are making food products with those waters? San has just discovered they have a serious lead problem with the lead soldering in copper pipes and are moving to PVC pipes now. When I stroll down the streets of San , I see businesses that went broke and wonder whether they would have survived if the people hadn't been lead poisoned and grew dim of wit and the spark of new ideas to support their businesses. Evidently the homeowner owns the pipes on his property, but it seems legally that means the homeowner has a percentage of the burden of what has happened to his family and the San Water Company should bear the rest, which I would calculate to be about 99.85%. Aspartame has been found to cause methane and formalydehyde to be in the body and it is written in The New England Medical Journal and substantiated all over the place, but still it sits on the shelves, is in children's vitamins and diet soft drinks and all those artificial sweeteners. And the government now says diabetics are dying at younger and younger years and it's some kind of mystery. When the body isn't well to begin with and the brain has no immunity to defend itself against toxins, we have to take the attitude of Masahiro, who said, " The barn's burnt down, now I can see the moon! " and go about a happier stance in that we at least know more than we did previously and eventually, as we lead our children out, we can then help others. We're just sadly at a point in history wherein everyone knows but perhaps no one can prove beyond a doubt that each singular child of autism has been mercury poisoned. Well, I hope this helps. It worked for me very well and Lord only knows how many others the neurologist is going to be able to help once I teach him what we did to orally chelate our daughter, once I show him the urine test results and once she hopefully moves forward in her journey with this confused and yet hopeful mother who has had to go throughout this entire time teaching doctors about autism. I'm also pleased God has seen fit to place autistic angels into the hands of actual doctors, immunologists, owners of laboratories and makers of supplements. Now we are moving ahead. Minc Re: Re: ALA only > > > > > > Hi > > > > > > Sorry, I have to agree with Wayne. Where is this information? Why > won't > > > share with the group? Why is she insisting that we find out for > > > ourselves? > > > > > > I'm sure that chelation would help our daughter, but I need to have > solid, > > > yes, " Scientific " evidence (ie test results) in support of it before DH > will > > > consider it. > > > So where do I find this information? > > > > > > Margaret > > > > > > ======================================================= > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 Please read the archives. My personal account of my then 2 1/2 year old son is there. Thank god I have a supportive husband who trusts my judgement as a parent and not a " DH that I have to prove it to. " Maybe that is a bit of a problem as well. WD Re: Re: ALA only > > > > Hi > > > > Sorry, I have to agree with Wayne. Where is this information? Why won't > > share with the group? Why is she insisting that we find out for > > ourselves? > > > > I'm sure that chelation would help our daughter, but I need to have solid, > > yes, " Scientific " evidence (ie test results) in support of it before DH will > > consider it. > > So where do I find this information? > > > > Margaret > > > ======================================================= > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2002 Report Share Posted May 29, 2002 Hi Georgina, Count me in for 2 at the steakhouse. I will be staying at the Hawthorne and hope to get there around 2 -3 Fri afternoon. Kim Godfrey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 I have a spot on my neck just under my chin thats about as big around as a quarter that itches. There's nothing there, no rash. The skin thickens there from me scratching at it. No one knows why it itches. Dermatologist says nothing to worry about. I've put about every cream known to man on it prescription and not and it doesn't go away. Someday's it's worse than others. Let me know if you find out what it is? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 I have a spot on my neck just under my chin thats about as big around as a quarter that itches. There's nothing there, no rash. The skin thickens there from me scratching at it. No one knows why it itches. Dermatologist says nothing to worry about. I've put about every cream known to man on it prescription and not and it doesn't go away. Someday's it's worse than others. Let me know if you find out what it is? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 I have a spot on my neck just under my chin thats about as big around as a quarter that itches. There's nothing there, no rash. The skin thickens there from me scratching at it. No one knows why it itches. Dermatologist says nothing to worry about. I've put about every cream known to man on it prescription and not and it doesn't go away. Someday's it's worse than others. Let me know if you find out what it is? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 I have a spot on my neck just under my chin thats about as big around as a quarter that itches. There's nothing there, no rash. The skin thickens there from me scratching at it. No one knows why it itches. Dermatologist says nothing to worry about. I've put about every cream known to man on it prescription and not and it doesn't go away. Someday's it's worse than others. Let me know if you find out what it is? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2002 Report Share Posted December 9, 2002 Hi Leighanne, I heard of a similar situation and it turned out the child had a severe toothache. I noticed that my son becomes VERY CHALLENGING just before he begins to show symptoms of a cold or flu. I'm not sure if this applies to your son, but perhaps there is some physical discomfort or pain going on. You mentioned sleep problems too. Sleep deprivation is tough, as you know. On parents and on children, and has been associated with increased problem behaviors and decreased learning in children. Psychologist Mark Durand provides behavior intervention techniques for sleep problems in his book ( Durand, V.M. (1998). Sleep Better! A Guide to Improving Sleep for Children with Special Needs. Baltimore, MD: H. s Publishing Co.) . Here is a link to Durand's web page at SUNY Albany with a list of his research articles pertaining to sleep, problem behaviors, functional communication, etc. that you might find helpful (http://www.albany.edu/psy/fac_vmd.html). His sleep book was reviewed favorably in the CT FEAT newsletter (Spring 2002), which you can access through the CT FEAT site, www.ctfeat.org. You can order the book through Amazon. Of course, you should rule out any physical pain that might be causing the sleep problems and the other unhappy behaviors. They shouldn't automatically be blamed on autism. I hope you have a good pediatrician with a sensitivity to children with autism, who you can consult on this. Hang in there, mom. This is a rough situation for you and your family right now. Best wishes for staying focused on finding a solution. a In a message dated 12/9/02 4:32:27 AM, writes: << Message: 5 Date: Mon, 09 Dec 2002 02:05:00 -0000 From: " ethansmom2002 <ethand@...> " <ethand@...> Subject: aba and continued regression and horrible tantrums help please I would like responses from anyone who has a child whom they have done ABA with and still have not seen progress and have seen ups and down in learning abilities. Yes we are going to do a 24 hour EEG and MRI. I have done everything myself and have recently moved to an area where he will be placed in an ABA school in a couple months. He has screamed non stop for two weeks with terrible aggression, sleeps 3 hours a night and wont even sit to watch a video. I have not been much of a therapist if one at all for a while because of lack of sleep and the fact that my child is unbearable. My sons screaming sounds like an animal, and he will do it for hours and hours. He is so loud we have to leave our builing afraid the neighbors will call the police. He has never been this bad and I know it is not all due to the move because he has slowly gotten to this point. Has anyone had similar experience?? Please share them. You can email me privately. Leighanne email is daleleeann@... >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2002 Report Share Posted December 9, 2002 Leighanne, How old is your son? How is his receptive language? How about expressive? Are you trying any biomedical approaches (DAN! etc.)? If so, what medicines/supplements/diets are you using? I understand if you do not want to share this information, but it may help us help you. My best to you, Liz J Leighanne wrote: > I would like responses from anyone who has a child whom they have > done ABA with and still have not seen progress and have seen ups and > down in learning abilities. Yes we are going to do a 24 hour EEG and > MRI. > > I have done everything myself and have recently moved to an area > where he will be placed in an ABA school in a couple months. He has > screamed non stop for two weeks with terrible aggression, sleeps 3 > hours a night and wont even sit to watch a video. > > I have not been much of a therapist if one at all for a while because > of lack of sleep and the fact that my child is unbearable. My sons > screaming sounds like an animal, and he will do it for hours and > hours. He is so loud we have to leave our builing afraid the > neighbors will call the police. He has never been this bad and I know > it is not all due to the move because he has slowly gotten to this > point. Has anyone had similar experience?? Please share them. You > can email me privately. > > > Leighanne > email is daleleeann@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2003 Report Share Posted May 9, 2003 No surprises here, I just got a call back from the Dr. office for thyroid lab work...underactive, just as I suspected. I have been tired, lethargic, depressed, and having the night sweats. Appt for followup is Tues. I'll let ya'll know what happens. Sincerely,NaomiMom to , 7 mos 5/12/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2009 Report Share Posted November 2, 2009 For Jen ~ yes you can post this to your Facebook. Please make sure that Lu Lyons-Bridges, the herbalist’s name & contact information is on the posting so that she gets credit for the information. I sent it out to everyone I knew. For Lori ~ I don’t have any more information than what is in the posting. Contact Lu directly. She is an amazing herbalist & I’m sure she will be happy to share what she knows with you.   Lu Lyons-Bridges, Professional Herbalist 253-921-5504 or lu@... Quote Link to comment Share on other sites More sharing options...
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