Guest guest Posted November 4, 2010 Report Share Posted November 4, 2010 Dr. SH (Redwood city), Dr. EG (Santa ), and Dr. CG (Los Altos) are also in the SF bay area. Dr. SH's father is director of IGeneX. All 3 are ILADS doctors who presented in ILADS conferences in the past. LiminHi Joanna - My son had Lyme Induced Autism; our entire family had Lyme and co-infections from NH. I just returned from ILADS (International Lyme & Associated Diseases Society) annual conference in New Jersey, and know many of the specialists personally.Lyme ultimately is a clinical diagnosis. If you have a positve Western Blot blood test (Igenex is best)the patient is positive; however a negative result doesn't rule out Lyme and co-infections. Case in point:my son first had a negative Western Blot blood test. 6 months into antibiotic treatment we retested and he had a full blown positive (by CDC standards). The reason - to measure antibodies in a child who has battled Lyme for years, even a decade, their immune system may be too weak to produce antibodies. With antibiotic treatment, the child and his immune system strengthen enough to make antibodies, resulting in a full positive test result.Two ILADS specialists in the Bay area are Ray Stricker, MD and Ginger Savely, Nurse Practioner, PhD.Feel free to ontact me should you need more information.Martyspacecoastlyme@... To: BorreliaMultipleInfectionsAndAutism Sent: Thu, November 4, 2010 11:37:32 AMSubject: New MemberHi all,My name is Joanna, and my son's name is Preston who is 15 years old. We've been in autism journey since he was 2 1/2 years old. We've been with DAN! for 8 years, Yasko for 1 year, Sequential Homeopathy for 3 years, and my holistic pediatrician just had a phone conversation with the Houston homeopathy ladies 2 days ago, and my pediatrician would like Preston to have tests to check if he has Lyme. After reading for 2 days and emailing some parents, I come to here. But from what I had read, tests are not 100% accurate. Blood test is impossible for my son as he had too many traumas during his DAN! 8 years. So, pedi mentioned urine test, 1st time w/o provocation to get baseline, if it's negative, we'll do a provocation. But after reading, it seems there are many false negatives or false positives results. What tests did you do to help to diagnose Lyme?Thank you so much.Joanna (from Bay Area) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2010 Report Share Posted November 4, 2010 Dr. SH (Redwood city), Dr. EG (Santa ), and Dr. CG (Los Altos) are also in the SF bay area. Dr. SH's father is director of IGeneX. All 3 are ILADS doctors who presented in ILADS conferences in the past. LiminHi Joanna - My son had Lyme Induced Autism; our entire family had Lyme and co-infections from NH. I just returned from ILADS (International Lyme & Associated Diseases Society) annual conference in New Jersey, and know many of the specialists personally.Lyme ultimately is a clinical diagnosis. If you have a positve Western Blot blood test (Igenex is best)the patient is positive; however a negative result doesn't rule out Lyme and co-infections. Case in point:my son first had a negative Western Blot blood test. 6 months into antibiotic treatment we retested and he had a full blown positive (by CDC standards). The reason - to measure antibodies in a child who has battled Lyme for years, even a decade, their immune system may be too weak to produce antibodies. With antibiotic treatment, the child and his immune system strengthen enough to make antibodies, resulting in a full positive test result.Two ILADS specialists in the Bay area are Ray Stricker, MD and Ginger Savely, Nurse Practioner, PhD.Feel free to ontact me should you need more information.Martyspacecoastlyme@... To: BorreliaMultipleInfectionsAndAutism Sent: Thu, November 4, 2010 11:37:32 AMSubject: New MemberHi all,My name is Joanna, and my son's name is Preston who is 15 years old. We've been in autism journey since he was 2 1/2 years old. We've been with DAN! for 8 years, Yasko for 1 year, Sequential Homeopathy for 3 years, and my holistic pediatrician just had a phone conversation with the Houston homeopathy ladies 2 days ago, and my pediatrician would like Preston to have tests to check if he has Lyme. After reading for 2 days and emailing some parents, I come to here. But from what I had read, tests are not 100% accurate. Blood test is impossible for my son as he had too many traumas during his DAN! 8 years. So, pedi mentioned urine test, 1st time w/o provocation to get baseline, if it's negative, we'll do a provocation. But after reading, it seems there are many false negatives or false positives results. What tests did you do to help to diagnose Lyme?Thank you so much.Joanna (from Bay Area) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2010 Report Share Posted November 4, 2010 Hi Marty, Thank you for bringing up your son's experience to let me understand more. I'll take a look at the ILADS site. I feel like I need to learn so many things like my son is getting a new diagnosis! Just like when he first got his autism diagnosis. Except I am 12 years older and my memory is worse. Thanks again. Joanna > > Hi Joanna - > > My son had Lyme Induced Autism; our entire family had Lyme and co-infections > from NH. I just returned from ILADS (International Lyme & Associated Diseases > Society) annual conference in New Jersey, and know many of the specialists > personally. > Lyme ultimately is a clinical diagnosis. If you have a positve Western Blot > blood test (Igenex is best) > the patient is positive; however a negative result doesn't rule out Lyme and > co-infections. Case in point: > my son first had a negative Western Blot blood test. 6 months into antibiotic > treatment we retested and he had a full blown positive (by CDC standards). The > reason - to measure antibodies in a child who has battled Lyme for years, even a > decade, their immune system may be too weak to produce antibodies. With > antibiotic treatment, the child and his immune system strengthen enough to make > antibodies, resulting in a full positive test result. > Two ILADS specialists in the Bay area are Ray Stricker, MD and Ginger Savely, > Nurse Practioner, PhD. > Feel free to ontact me should you need more information. > Marty > spacecoastlyme@... > >  > > > > ________________________________ > > To: BorreliaMultipleInfectionsAndAutism > Sent: Thu, November 4, 2010 11:37:32 AM > Subject: New Member > >  > Hi all, > > My name is Joanna, and my son's name is Preston who is 15 years old. We've been > in autism journey since he was 2 1/2 years old. We've been with DAN! for 8 > years, Yasko for 1 year, Sequential Homeopathy for 3 years, and my holistic > pediatrician just had a phone conversation with the Houston homeopathy ladies 2 > days ago, and my pediatrician would like Preston to have tests to check if he > has Lyme. After reading for 2 days and emailing some parents, I come to here. > But from what I had read, tests are not 100% accurate. Blood test is impossible > for my son as he had too many traumas during his DAN! 8 years. So, pedi > mentioned urine test, 1st time w/o provocation to get baseline, if it's > negative, we'll do a provocation. But after reading, it seems there are many > false negatives or false positives results. > > > What tests did you do to help to diagnose Lyme? > > Thank you so much. > > Joanna (from Bay Area) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2010 Report Share Posted November 4, 2010 Hi Marty, Thank you for bringing up your son's experience to let me understand more. I'll take a look at the ILADS site. I feel like I need to learn so many things like my son is getting a new diagnosis! Just like when he first got his autism diagnosis. Except I am 12 years older and my memory is worse. Thanks again. Joanna > > Hi Joanna - > > My son had Lyme Induced Autism; our entire family had Lyme and co-infections > from NH. I just returned from ILADS (International Lyme & Associated Diseases > Society) annual conference in New Jersey, and know many of the specialists > personally. > Lyme ultimately is a clinical diagnosis. If you have a positve Western Blot > blood test (Igenex is best) > the patient is positive; however a negative result doesn't rule out Lyme and > co-infections. Case in point: > my son first had a negative Western Blot blood test. 6 months into antibiotic > treatment we retested and he had a full blown positive (by CDC standards). The > reason - to measure antibodies in a child who has battled Lyme for years, even a > decade, their immune system may be too weak to produce antibodies. With > antibiotic treatment, the child and his immune system strengthen enough to make > antibodies, resulting in a full positive test result. > Two ILADS specialists in the Bay area are Ray Stricker, MD and Ginger Savely, > Nurse Practioner, PhD. > Feel free to ontact me should you need more information. > Marty > spacecoastlyme@... > >  > > > > ________________________________ > > To: BorreliaMultipleInfectionsAndAutism > Sent: Thu, November 4, 2010 11:37:32 AM > Subject: New Member > >  > Hi all, > > My name is Joanna, and my son's name is Preston who is 15 years old. We've been > in autism journey since he was 2 1/2 years old. We've been with DAN! for 8 > years, Yasko for 1 year, Sequential Homeopathy for 3 years, and my holistic > pediatrician just had a phone conversation with the Houston homeopathy ladies 2 > days ago, and my pediatrician would like Preston to have tests to check if he > has Lyme. After reading for 2 days and emailing some parents, I come to here. > But from what I had read, tests are not 100% accurate. Blood test is impossible > for my son as he had too many traumas during his DAN! 8 years. So, pedi > mentioned urine test, 1st time w/o provocation to get baseline, if it's > negative, we'll do a provocation. But after reading, it seems there are many > false negatives or false positives results. > > > What tests did you do to help to diagnose Lyme? > > Thank you so much. > > Joanna (from Bay Area) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2012 Report Share Posted May 15, 2012 Hi all - just joined - going through a difficult time with bronchiectasis - hoping for some support! Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2012 Report Share Posted May 15, 2012 Hi Steve I don’t know what’s happened but you have been admitted to the dormant group. I have sent you and invitation to our active group ‘bronchiectasis1’. Please respond to that invitation and you will find a very supportive group awaits you. Look forward to talking to on bronch 1. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2012 Report Share Posted August 31, 2012 HI all I have advised to come on over to bronch1 so please wait for her new post there. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2012 Report Share Posted August 31, 2012 Liz, Is there another site I should have joined, or do I post from here? Have never done this before so a little confused on the process. Thanks for your help on this. To: bronchiectasis Sent: Friday, August 31, 2012 8:50 AMSubject: Re: New Member HI all I have advised to come on over to bronch1 so please wait for her new post there. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2012 Report Share Posted August 31, 2012 hi nancyi have sent you a mail explaining and an invite to our active group bronch1. accept the invite and post there its where we all are. you should have received invite from yahoo by now - check your junk mail they sometimes go there. if you dont receive it shortly let me know and i will send again....and welcome!!lizSent from my iPhone Liz, Is there another site I should have joined, or do I post from here? Have never done this before so a little confused on the process. Thanks for your help on this. To: bronchiectasis Sent: Friday, August 31, 2012 8:50 AMSubject: Re: New Member HI all I have advised to come on over to bronch1 so please wait for her new post there. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2012 Report Share Posted August 31, 2012 First of all, welcome, . Look forward to hearing from you. Stay tuned and ask questions, lots of questions. Someone will come up with appropriate answers and solutions for you. Most of all, you'll feel the love of those who are going through bronch. We're all a bit different. Ann in MO NO GOD, NO PEACE KNOW GOD, KNOW PEACE To: bronchiectasis Sent: Friday, August 31, 2012 9:45 AMSubject: New Member I am a new member and would like to learn more about the group and thedifferent health issues that come up with bronchiectasis. I am in theearly stages with only breathing difficulites at the present time. Anysuggestions on how to make breathing easier? Thanks Quote Link to comment Share on other sites More sharing options...
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