Guest guest Posted April 30, 2002 Report Share Posted April 30, 2002 Marcia, Welcome to the group. Hope we can be of help. > Intro to Group > > > Dear Group Members, > > My name is Marcia and I have had CFS for at least 18 years. > I am so thrilled to finally be in a group who understand my > struggle, but are focused on exchanging information. How smart > you all are still. And what generosity you give in sharing > information. > > Sincerely yours, > > Marcia > > (I apologize if this is too long) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2002 Report Share Posted April 30, 2002 The one neuropsychologist that I keep being refered to is in Berkeley CA, but her evaluation is $2500. Maybe you should consider a qeeg. It measures brain waves, and shows a cfids pattern, and some people then do neurofeedback and get improvements. You can read about it at siberimaging.com. Doris ----- Original Message ----- From: " marcianme " <inthewoods@...> > I think I need some help with my brain functioning. I am aware of > the " smart drugs. " I want to get some biofeedback. But first I > need to find a psychoneurologist to have a complete battery of > tests for brain function. This will help me keep my SSD AND I > hope help to pinpoint ways I can compensate for brain loss. > > I have been to numerous neurologists who say I am not > organically brain dysfunctional but a mental case. Can anyone > recommend a CFS knowledgeable psychologist in California? I > live in Laguna Woods which is driveable (not by me) between > Los Angeles/San valley down to San Diego. > > I am so thrilled to finally be in a group who understand my > struggle, but are focused on exchanging information. How smart > you all are still. And what generosity you give in sharing > information. > > Sincerely yours, > > Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2002 Report Share Posted August 9, 2002 intro to group > 4. Where do you live NOW? > * Denver, CO Damn, I love Denver. What a great town. -- Cheers, --Jeff Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 Hi Candace, My son was seizing a week after his vaccines...I didn't notice for a while what they were..he was having them at night at first....maybe your son was having them all along but you didn't notice? My son's seizures started out different then they later became. All the best, " Parents should decide through informed choice, which vaccines if any should be given to their children " Vaccine Information or vaccinetruth.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 At 05:18 AM 02/14/2004 -0000, you wrote: >Hello everyone, > >My son, , was diagnosed with Infantile Spasms at 5.5 months of >age. He is now 21 months old and severely developmentally delayed >after having daily seizures for about a year. The neuros have found >no medical explanation for his condition to date. I am beginning to >suspect that it might be an adverse reaction to vaccinations. He >had up to his four month series before the spasms started. Have >there been documented instances of adverse reactions up to two >months after the shots, or are reactions more acute? Seizures can start at any time and VERY LIKELY are due to the vaccines His >neurologist has advised me to give the DT and MMR, while the >pediatrician wanted to hold off on all shots until the spasms were >under control. Well I wouldn't go near another vaccine EVER The next one could really do him in Especially once there has been a neuro or immune system reaction We are planning to relocate to land in several >months. I am leery of giving him any other shots and would really >appreciate some suggestions about how to handle this while still >sending him to an early intervention center before he is three years >old. Thank you for the opportunity to learn from this forum. Seeing a homeopath also could help him greatly. Do you know anything about homeopathy? Welcome -------------------------------------------------------- Sheri Nakken, R.N., MA, Classical Homeopath Vaccination Information & Choice Network, Nevada City CA & Wales UK $$ Donations to help in the work - accepted by Paypal account vaccineinfo@... voicemail US 530-740-0561 (go to http://www.paypal.com) or by mail Vaccines - http://www.nccn.net/~wwithin/vaccine.htm Vaccine Dangers On-Line course - http://www.nccn.net/~wwithin/vaccineclass.htm Homeopathy On-Line course - http://www.nccn.net/~wwithin/homeo.htm ANY INFO OBTAINED HERE NOT TO BE CONSTRUED AS MEDICAL OR LEGAL ADVICE. THE DECISION TO VACCINATE IS YOURS AND YOURS ALONE. ****** " Just look at us. Everything is backwards; everything is upside down. Doctors destroy health, lawyers destroy justice, universities destroy knowledge, governments destroy freedom, the major media destroy information and religions destroy spirituality " .... Ellner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 please visit www.nvic.org and read, read, read that site. Intro to group > Hello everyone, > > My son, , was diagnosed with Infantile Spasms at 5.5 months of > age. He is now 21 months old and severely developmentally delayed > after having daily seizures for about a year. The neuros have found > no medical explanation for his condition to date. I am beginning to > suspect that it might be an adverse reaction to vaccinations. He > had up to his four month series before the spasms started. Have > there been documented instances of adverse reactions up to two > months after the shots, or are reactions more acute? His > neurologist has advised me to give the DT and MMR, while the > pediatrician wanted to hold off on all shots until the spasms were > under control. We are planning to relocate to land in several > months. I am leery of giving him any other shots and would really > appreciate some suggestions about how to handle this while still > sending him to an early intervention center before he is three years > old. Thank you for the opportunity to learn from this forum. > > Candace > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 Hello Candace , Welcome to the group. It is very likely that your child has been injured by vaccines. I have an ASD child who was developing normally and then began to regress after the MMR. More vaccines could potentially cause your child more harm. Also, in my home town, two perfectly developing twins received their vaccines on schedule from birth, but the DPT at six months caused both twins to take seizures. They were later diagnosed autistic and at age seven both girls died.---very tragic story. I am convinced vaccines cause an array of illnesses and disorders. And, yes there can be delayed and/or gradual even subtle reactions to vaccines. You can help your son to heal (homeopathy) and stop the injuries by stopping the vaccines. There are exemptions to vaccines for school attendance. I don't know land's exemptions. Or you can request services in the home. My son's entire early intervention program was done in the home so I didn't need an exemption for choosing not to vaccinate. Beware, most schools (nurses) try to intimidate and threaten you if your child is not up to date so to speak. Stand up for your child and know your parental rights. Someone on the list may know land's exemption law and/or where to look. I hope your son begins to heal and you are probably correct about how his injury came about. Lynda vicancan wrote: >Hello everyone, > >My son, , was diagnosed with Infantile Spasms at 5.5 months of >age. He is now 21 months old and severely developmentally delayed >after having daily seizures for about a year. The neuros have found >no medical explanation for his condition to date. I am beginning to >suspect that it might be an adverse reaction to vaccinations. He >had up to his four month series before the spasms started. Have >there been documented instances of adverse reactions up to two >months after the shots, or are reactions more acute? His >neurologist has advised me to give the DT and MMR, while the >pediatrician wanted to hold off on all shots until the spasms were >under control. We are planning to relocate to land in several >months. I am leery of giving him any other shots and would really >appreciate some suggestions about how to handle this while still >sending him to an early intervention center before he is three years >old. Thank you for the opportunity to learn from this forum. > >Candace > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2007 Report Share Posted January 20, 2007 Hello nne and welcome to the group. I am always sorry to hear what others have gone through and always reading and learning what I can from this group. I wish you well in whatever you choose to do. I have bulging disks also and mild to moderate stenosis which have caused pain in both my legs. A lot of the pain feels muscular. I felt better this summer from seeing a chiropractor a few times a week and getting an epidural but all that didn't last and I can't afford a chiropractor that often now. I am seeing an orthopedic Friday and am hoping for some solutions. I guess we are all looking for solutions. Again, welcome and I do wish you well. Barbara aikidoka96 <in_stitches_59@...> wrote: Hi to you all. I have been lurking for a few weeks and feel that my intro is LONG overdue. I am 47 years old and have lived with back pain for 35 years. I have had 3 lamis done and have been diagnosed with FBSS(failed back surgery syndrome). I resolved that I would not have another lumbar laminectomy. It seems that each time that I have had to have the surgery , we just kept going up another level. Instead, I had a spinal cord stimulator put in 2 years ago due to leg pain which was unrelieved by meds,PT,and traction. At the present time we(my pain mgmt. Dr. and I) are weighing the possibility of removing the SCS and implanting the morphine pump this year. We are thinking this way because I have a multitude of other medical conditions. Besides the bulging discs in the lumbar area, I do have multilevel DDD,mild to moderate central canal stenosis and a mild anterolisthesis(a vertebra that juts forward and back @L3-L4. I was put out on disability in 2000. That was a bitter pill to swallow but I do keep my mind busy. I have a VERY supportive family. They are a Godsend!!! I was hoping that by joining this group I may be able to be supportive to any one here that may need an ear. I think that I have done more than introduce myself...I may have written a novella!!! Hope to chat and share ideas. nne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2007 Report Share Posted February 3, 2007 [:-/] Hi nne My name is Irene and I wrote to u a few days ago, and I was just wondering if u ever got my e-mail. and if u would like to exchange ideas regarding our condition or we could chat in the Internet. Seems like we have loots of things on comon really. so I have gone through a lot hard stuff since 1997 when a injure myself at work twice ( hard to believe) ( AH HA) but it real?. quit a few surgeries, lots of metal hardware, injection like cracy, medications, morphine pump etc etc.. Maybe we could joint u and do a Movie together? instead of a Novela. CHIKITABH79@... <mailto:CHIKITABH79@...> or CHIKITABH79@... <mailto:CHIKITABH79@...> Drop a line and we cant start a Spine Group Chat charing ideas Bye for now Irene / Chikitabh79 > > Hi to you all. I have been lurking for a few weeks and feel that > my intro is LONG overdue. I am 47 years old and have lived with back > pain for 35 years. I have had 3 lamis done and have been diagnosed with > FBSS(failed back surgery syndrome). I resolved that I would not have > another lumbar laminectomy. It seems that each time that I have had to > have the surgery , we just kept going up another level. Instead, I had > a spinal cord stimulator put in 2 years ago due to leg pain which was > unrelieved by meds,PT,and traction. At the present time we(my pain > mgmt. Dr. and I) are weighing the possibility of removing the SCS and > implanting the morphine pump this year. We are thinking this way > because I have a multitude of other medical conditions. Besides the > bulging discs in the lumbar area, I do have multilevel DDD,mild to > moderate central canal stenosis and a mild anterolisthesis(a vertebra > that juts forward and back @L3-L4. > I was put out on disability in 2000. That was a bitter pill to > swallow but I do keep my mind busy. I have a VERY supportive family. > They are a Godsend!!! I was hoping that by joining this group I may be > able to be supportive to any one here that may need an ear. > I think that I have done more than introduce myself...I may have > written a novella!!! Hope to chat and share ideas. > > nne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 Jody, out of all the Periodic Fever Syndromes definitely has fevers which reduce in a much shorter duration than you are mentioning. The exactness of the cyclical fevers will vary but the fever WILL NOT remain elevated with . (not for 6 weeks) Pfapa episodes run as short as 3 days and as long as 8 days. Not much more than that and the 8 days is unusual but may occur. With and with some of the other PFSs, Prednisone will abort the fever. Have the docs checked for other disorders including cystic fibrosis... leukemia,.... other PFSs??? There are many reasons a child will run fevers.... and Periodic Fever Syndromes may be one of them.... but it would not be ..... have they done genetic studies for other fever disorders? Is your little one usually healthy, not get the usual colds and coughs and virus' other children get?? Have they done a sweat test for CF? Have they done a bone marrow?? Is she being seen at the Mayo? God Bless Fran Fran Bulone RN Mom to ph 7yr CIAS1 mutation 11/05; Dyspraxia 11/06; Dyslexia 12/06 Waxhaw NC / http://www.caringbridge.org/visit/josephbulone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2008 Report Share Posted April 30, 2008 wow, sorry you have to be here. did they do genetic testing yet? good luck ************** Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. (http://autos.aol.com/used?NCID=aolcmp00300000002851) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2008 Report Share Posted April 30, 2008 wow, sorry you have to be here. did they do genetic testing yet? good luck ************** Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. (http://autos.aol.com/used?NCID=aolcmp00300000002851) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2008 Report Share Posted April 30, 2008 wow, sorry you have to be here. did they do genetic testing yet? good luck ************** Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. (http://autos.aol.com/used?NCID=aolcmp00300000002851) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2008 Report Share Posted April 30, 2008 , Have you heard of or seen Dr. Lapidius? She works closes with Dr. Kastner and is doing the study at NIH in land. Anyway - she is at Dupont on Mondays. Just thought I'd put it out there. I'm sure your doctor knows her but if not it's a great resource that is right there at the same hospital. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2008 Report Share Posted April 30, 2008 , Have you heard of or seen Dr. Lapidius? She works closes with Dr. Kastner and is doing the study at NIH in land. Anyway - she is at Dupont on Mondays. Just thought I'd put it out there. I'm sure your doctor knows her but if not it's a great resource that is right there at the same hospital. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2008 Report Share Posted May 1, 2008 Did the dr. have any idea why the T & A did not work? Will Tori have trouble fighting infections after she stops the antibiotics? Thanks char. ************** Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. (http://autos.aol.com/used?NCID=aolcmp00300000002851) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2008 Report Share Posted May 1, 2008 Did the dr. have any idea why the T & A did not work? Will Tori have trouble fighting infections after she stops the antibiotics? Thanks char. ************** Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. (http://autos.aol.com/used?NCID=aolcmp00300000002851) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2009 Report Share Posted July 13, 2009 Hi Everyone, I'm new to the group and newly diagnosed (last month)--though based on symptoms probably have had Lyme for at least 5+ years. I bought Mr. Buhner's book and plan to start protocol as soon as my herbal/suppl order arrives. He doesn't deal specifically with diet & exercise. Right now coming off bad herx, but hope to get back to where I was, which allowed moderate exercise: brisk walking (energy permitting). I read somewhere that muscle strengthening anaerobic exercise is best (and to avoid aerobic exercise) and Swedish massage highly recommended (Buhner). Has anyone felt better with certain moderate exercise and/or massage? What foods promote health (besides the obvious fresh fruits & veggies & whole grains)? Is there a good book for these lifestyle issues? Best wishes to all, Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2009 Report Share Posted July 13, 2009 Weights are helpful........... [ ] Intro to group Hi Everyone, I'm new to the group and newly diagnosed (last month)--though based on symptoms probably have had Lyme for at least 5+ years. I bought Mr. Buhner's book and plan to start protocol as soon as my herbal/suppl order arrives. He doesn't deal specifically with diet & exercise. Right now coming off bad herx, but hope to get back to where I was, which allowed moderate exercise: brisk walking (energy permitting). I read somewhere that muscle strengthening anaerobic exercise is best (and to avoid aerobic exercise) and Swedish massage highly recommended (Buhner). Has anyone felt better with certain moderate exercise and/or massage? What foods promote health (besides the obvious fresh fruits & veggies & whole grains)? Is there a good book for these lifestyle issues? Best wishes to all, Kim Quote Link to comment Share on other sites More sharing options...
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