Guest guest Posted December 8, 2006 Report Share Posted December 8, 2006 , Yes you are welcome here. I am so sorry to hear of the very challenging year that you and amanda have had. It seems like you have both just jumped through one hoop into another. As you will find by reading thru the posts there are many that have struggled along the way to get an accurate diagnosis and treatment for their child. There is nothing more frustrating that trying to find outs whats wrong so that you can start to do something about it. Have you been pleased with amanda's doctors? What type of surgery were they looking to do? Have you had any success in getting a homebound tutor? How has she been keeping up with her studies? This is such an informative and compassionate group of people. Please feel free to vent or ask questions. Chances are pretty good that someone will be able to respond or at least lead you in the right direction. Do you have a local arthritis foundation that you can be in touch with? Often times they will have local support groups that can be beneficial as well. I am glad that you found us and hope that you will feel very comfortable here. Blessings, sonia (aundrea 11 systemic jra/gerd) > > hi everyone, > > I am new to the group, and not even sure if we 'qualify' for this group...I thought it was for JA but another message said JRA...we don't have a definitive diagnosis yet... > > My daughter is 16. She has always been extremely active and athletic, and also always had pain....from her feet waking her in the night as a toddler to numerous bouts of tendonitis in knees and shoulders throughout grade school to high school...but pushed through the pain with lots of advil because her sports defined her. She has always had chronic respiratory infections as well. > > About two years ago, she began getting sicker...mono and more respiratory infections. Six months later, she received her first diagnosis...CVID, a primary immune deficiency. She played most of her water polo season last year but became progressively more ill, and she began infusions January - we thought she would now start to improve. Early Feb, she came down with viral meningitis. Since that time, she has had chronic daily migraines and leg pain that never ceases. > > Spinal CT was done to rule out lesions. In May saw peds rheumo at UCLA. CRP and ANA both positive; dr not sure if after effects of meningitis. Noticed rigidity in distal finger joints and signs of past inflammation. My daugther was having a bad flare of bursitis in her hip. Dr put her on anaprox. July, her blood work was okay, although her pain was no better. In Aug, stomach was so bad, dr removed her from Anaprox...She also joined a ped pain mgmt program at UCLA at this time, but it has not helped either. Sept when hospitalized for IV treatment, had vasculitis...October tests CRP and ANA were high again so rheumo started Mobic. In Nov, the ENT took her off all anti-inflammatory meds in prep for surgery...my daughter did not think Mobic was helping her at all until she stopped it...her hips and knees were excruciating over Thanksgiving. Surgery postponed...medically unstable... > > Saw rheumo a few days ago. Daughter's left knee was swollen..although her joints aren't often visibly swollen. Dr says definitely arthritis...not certain what kind...tested RF but no results yet. If I understand correctly, her IVIG infusions make the diagnosis more difficult. > > It has been a long, frustrating year...my daughter has missed almost two semesters of school now...we just finally got an IEP for her...one more battle...she wants more than anything to have less pain, to return to school, and to play water polo her senior year.... > > Whether we belong in this group or not, thanks for listening... > > > mom to , 16, arthritis, CVID, migraines > > > --------------------------------- > Access over 1 million songs - Music Unlimited. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 Hi and welcome. Yes you belong. At her age, I would look into spondylitis as a possibility. Check out the symptoms of it at www.spondylitis.org <http://www.spondylitis.org/> or www.arthritis.org <http://www.arthritis.org/> and see if any of them fit your daughter. Make sure to get a slit lamp test eye exam to check for uveitis. An ANA positive girl is more susceptible to that. Let us know how she is doing, Michele ( 19, spondy) ________________________________ From: [mailto: ] On Behalf Of nancy barnes Sent: Friday, December 08, 2006 3:06 AM Subject: new to group hi everyone, I am new to the group, and not even sure if we 'qualify' for this group...I thought it was for JA but another message said JRA...we don't have a definitive diagnosis yet... My daughter is 16. She has always been extremely active and athletic, and also always had pain....from her feet waking her in the night as a toddler to numerous bouts of tendonitis in knees and shoulders throughout grade school to high school...but pushed through the pain with lots of advil because her sports defined her. She has always had chronic respiratory infections as well. About two years ago, she began getting sicker...mono and more respiratory infections. Six months later, she received her first diagnosis...CVID, a primary immune deficiency. She played most of her water polo season last year but became progressively more ill, and she began infusions January - we thought she would now start to improve. Early Feb, she came down with viral meningitis. Since that time, she has had chronic daily migraines and leg pain that never ceases. Spinal CT was done to rule out lesions. In May saw peds rheumo at UCLA. CRP and ANA both positive; dr not sure if after effects of meningitis. Noticed rigidity in distal finger joints and signs of past inflammation. My daugther was having a bad flare of bursitis in her hip. Dr put her on anaprox. July, her blood work was okay, although her pain was no better. In Aug, stomach was so bad, dr removed her from Anaprox...She also joined a ped pain mgmt program at UCLA at this time, but it has not helped either. Sept when hospitalized for IV treatment, had vasculitis...October tests CRP and ANA were high again so rheumo started Mobic. In Nov, the ENT took her off all anti-inflammatory meds in prep for surgery...my daughter did not think Mobic was helping her at all until she stopped it...her hips and knees were excruciating over Thanksgiving. Surgery postponed...medically unstable... Saw rheumo a few days ago. Daughter's left knee was swollen..although her joints aren't often visibly swollen. Dr says definitely arthritis...not certain what kind...tested RF but no results yet. If I understand correctly, her IVIG infusions make the diagnosis more difficult. It has been a long, frustrating year...my daughter has missed almost two semesters of school now...we just finally got an IEP for her...one more battle...she wants more than anything to have less pain, to return to school, and to play water polo her senior year.... Whether we belong in this group or not, thanks for listening... mom to , 16, arthritis, CVID, migraines --------------------------------- Access over 1 million songs - Music Unlimited. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2006 Report Share Posted December 12, 2006 Hi , thank you for your kind welcome. I was looking over the website and her symptoms sounds most like JSpA as her focus of pain is hips, knees, and sometimes heels...except for two things...under diagnosis, did I misunderstand that they usually do not have a positive ANA , which she does - and the drs repeated comments on the apparent dammage to the distal joints in her fingers..Unless her RF comes back positive, I think it is worth mentioning to the rheumy and will do so at her next appt. How is your son doing? How was high school for him with the illness? This combination of illnesses is just ruiing high school for . (she has missed two semesters)..it breaks my heart...we are hoping to get enough of a handle on her pain so she can be fully involved in her senior year... Thank you for telling me about spondylitis - I am open to anything that might help get a proper diagnosis and treatment! By the way, what is a slit lamp test eye exam and uveitis? I will let you know what transpires. Thanks again for your input. " Tepper, Michele " <MTepper@...> wrote: Hi and welcome. Yes you belong. At her age, I would look into spondylitis as a possibility. Check out the symptoms of it at www.spondylitis.org <http://www.spondylitis.org/> or www.arthritis.org <http://www.arthritis.org/> and see if any of them fit your daughter. Make sure to get a slit lamp test eye exam to check for uveitis. An ANA positive girl is more susceptible to that. Let us know how she is doing, Michele ( 19, spondy) ________________________________ From: [mailto: ] On Behalf Of nancy barnes Sent: Friday, December 08, 2006 3:06 AM Subject: new to group hi everyone, I am new to the group, and not even sure if we 'qualify' for this group...I thought it was for JA but another message said JRA...we don't have a definitive diagnosis yet... My daughter is 16. She has always been extremely active and athletic, and also always had pain....from her feet waking her in the night as a toddler to numerous bouts of tendonitis in knees and shoulders throughout grade school to high school...but pushed through the pain with lots of advil because her sports defined her. She has always had chronic respiratory infections as well. About two years ago, she began getting sicker...mono and more respiratory infections. Six months later, she received her first diagnosis...CVID, a primary immune deficiency. She played most of her water polo season last year but became progressively more ill, and she began infusions January - we thought she would now start to improve. Early Feb, she came down with viral meningitis. Since that time, she has had chronic daily migraines and leg pain that never ceases. Spinal CT was done to rule out lesions. In May saw peds rheumo at UCLA. CRP and ANA both positive; dr not sure if after effects of meningitis. Noticed rigidity in distal finger joints and signs of past inflammation. My daugther was having a bad flare of bursitis in her hip. Dr put her on anaprox. July, her blood work was okay, although her pain was no better. In Aug, stomach was so bad, dr removed her from Anaprox...She also joined a ped pain mgmt program at UCLA at this time, but it has not helped either. Sept when hospitalized for IV treatment, had vasculitis...October tests CRP and ANA were high again so rheumo started Mobic. In Nov, the ENT took her off all anti-inflammatory meds in prep for surgery...my daughter did not think Mobic was helping her at all until she stopped it...her hips and knees were excruciating over Thanksgiving. Surgery postponed...medically unstable... Saw rheumo a few days ago. Daughter's left knee was swollen..although her joints aren't often visibly swollen. Dr says definitely arthritis...not certain what kind...tested RF but no results yet. If I understand correctly, her IVIG infusions make the diagnosis more difficult. It has been a long, frustrating year...my daughter has missed almost two semesters of school now...we just finally got an IEP for her...one more battle...she wants more than anything to have less pain, to return to school, and to play water polo her senior year.... Whether we belong in this group or not, thanks for listening... mom to , 16, arthritis, CVID, migraines --------------------------------- Access over 1 million songs - Music Unlimited. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2006 Report Share Posted December 12, 2006 has a positive ANA, negative RF. What the dr may check for, in looking for a spondy diagnosis with the blood work, is a positive HLA-B27 marker. Now, is negative for that, but is still spondy. If you are positive, you may have more organ involvement. Either way, the diagnosis, as we were told, is based on symptoms. had a lot of ankle involvement, particularly the Achilles tendon. His fingers are also involved, mostly with knuckle swelling. Sometimes the drs felt he may have had psoriatic arthritis, but have always stuck with the spondy diagnosis since it was made, about 6 months after the initial JRA diagnosis. He began to have back involvement, which the dr found to be inflammation of his pelvic rim. That is when she diagnosed him with spondylitis. Overall, is now doing well. We were lucky in that he did not miss a lot of school. He did however, not participate in a lot of extra curricular's as he had planned to do. He was big into baseball and volleyball, but when the arthritis hit, he lost the ability to run for about 2 years. By the time the meds kicked in well enough to allow that, he was behind the other guys and sports being quite competitive where we are, he did not feel he could compete well enough, so he did not try. He did play ball locally for a couple of summers at first, but did not keep up with it. He did well in school, and once he was on methotrexate which is the DMARD that really helped him, he was physically much better. He did not get as sick in high school as he used to in grammar school. The hardest thing was getting him to keep up with the meds, and drs visits and now that he is older, he does not keep up with taking care of himself. He has days now when he has pain, and there is not much I can do, but encourage him to go back to the dr and start on meds again. The drs tell me this is quite common with kids with chronic illness that as they get older, they don't always do what they should. A slit lamp eye test is simply the eye dr dilating the pupils with special drops and then using a special light to look for inflammation of the eye. Arthritis of the eye, uveitis, can happen and there are no symptoms you can see by just looking. There are several kids on the list with this. I will say, this is the one dr does keep up with. When he was first diagnosed, he went every three months for the test. After one year clear, he started going every six months. For seven years after diagnosis the eye dr said, he should come for the test every six months. It is very important as blindness or other vision problems can happen if it goes undiagnosed. It is treatable if inflammation is found. I hope this has helped, and ask any questions you might have. There is a lot of help here on the list, Michele ( 19, spondy) ________________________________ From: [mailto: ] On Behalf Of nancy barnes Sent: Tuesday, December 12, 2006 9:10 AM Subject: RE: new to group Hi , thank you for your kind welcome. I was looking over the website and her symptoms sounds most like JSpA as her focus of pain is hips, knees, and sometimes heels...except for two things...under diagnosis, did I misunderstand that they usually do not have a positive ANA , which she does - and the drs repeated comments on the apparent dammage to the distal joints in her fingers..Unless her RF comes back positive, I think it is worth mentioning to the rheumy and will do so at her next appt. How is your son doing? How was high school for him with the illness? This combination of illnesses is just ruiing high school for . (she has missed two semesters)..it breaks my heart...we are hoping to get enough of a handle on her pain so she can be fully involved in her senior year... Thank you for telling me about spondylitis - I am open to anything that might help get a proper diagnosis and treatment! By the way, what is a slit lamp test eye exam and uveitis? I will let you know what transpires. Thanks again for your input. " Tepper, Michele " <MTepper@... <mailto:MTepper%40ftportfolios.com> > wrote: Hi and welcome. Yes you belong. At her age, I would look into spondylitis as a possibility. Check out the symptoms of it at www.spondylitis.org <http://www.spondylitis.org/ <http://www.spondylitis.org/> > or www.arthritis.org <http://www.arthritis.org/ <http://www.arthritis.org/> > and see if any of them fit your daughter. Make sure to get a slit lamp test eye exam to check for uveitis. An ANA positive girl is more susceptible to that. Let us know how she is doing, Michele ( 19, spondy) ________________________________ From: <mailto: %40> [mailto: <mailto: %40> ] On Behalf Of nancy barnes Sent: Friday, December 08, 2006 3:06 AM <mailto: %40> Subject: new to group hi everyone, I am new to the group, and not even sure if we 'qualify' for this group...I thought it was for JA but another message said JRA...we don't have a definitive diagnosis yet... My daughter is 16. She has always been extremely active and athletic, and also always had pain....from her feet waking her in the night as a toddler to numerous bouts of tendonitis in knees and shoulders throughout grade school to high school...but pushed through the pain with lots of advil because her sports defined her. She has always had chronic respiratory infections as well. About two years ago, she began getting sicker...mono and more respiratory infections. Six months later, she received her first diagnosis...CVID, a primary immune deficiency. She played most of her water polo season last year but became progressively more ill, and she began infusions January - we thought she would now start to improve. Early Feb, she came down with viral meningitis. Since that time, she has had chronic daily migraines and leg pain that never ceases. Spinal CT was done to rule out lesions. In May saw peds rheumo at UCLA. CRP and ANA both positive; dr not sure if after effects of meningitis. Noticed rigidity in distal finger joints and signs of past inflammation. My daugther was having a bad flare of bursitis in her hip. Dr put her on anaprox. July, her blood work was okay, although her pain was no better. In Aug, stomach was so bad, dr removed her from Anaprox...She also joined a ped pain mgmt program at UCLA at this time, but it has not helped either. Sept when hospitalized for IV treatment, had vasculitis...October tests CRP and ANA were high again so rheumo started Mobic. In Nov, the ENT took her off all anti-inflammatory meds in prep for surgery...my daughter did not think Mobic was helping her at all until she stopped it...her hips and knees were excruciating over Thanksgiving. Surgery postponed...medically unstable... Saw rheumo a few days ago. Daughter's left knee was swollen..although her joints aren't often visibly swollen. Dr says definitely arthritis...not certain what kind...tested RF but no results yet. If I understand correctly, her IVIG infusions make the diagnosis more difficult. It has been a long, frustrating year...my daughter has missed almost two semesters of school now...we just finally got an IEP for her...one more battle...she wants more than anything to have less pain, to return to school, and to play water polo her senior year.... Whether we belong in this group or not, thanks for listening... mom to , 16, arthritis, CVID, migraines --------------------------------- Access over 1 million songs - Music Unlimited. 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Guest guest Posted December 12, 2006 Report Share Posted December 12, 2006 I understand how feels about not doing treatment. I myself went through this rebellion. When you are sick, and constantly having to take meds to feel " Normal " , you feel like you have no control. So you stop getting treatment because that is a decision you can make. I regret it now. It finally took my husband (then boyfriend) pressuring me to take care of myself to get me back on track. Of course by then I had suffered some irreversible damage. Mostly it's elbows that no longer straighten, my knee needed a synevectomy. And I've lost range of motion. But at the time, you couldn't have told me anything about taking care of myself. I hope gets through this phase quickly, and doesn't lose as much as I did. JRA since 20 months old " Tepper, Michele " <MTepper@...> wrote: has a positive ANA, negative RF. What the dr may check for, in looking for a spondy diagnosis with the blood work, is a positive HLA-B27 marker. Now, is negative for that, but is still spondy. If you are positive, you may have more organ involvement. Either way, the diagnosis, as we were told, is based on symptoms. had a lot of ankle involvement, particularly the Achilles tendon. His fingers are also involved, mostly with knuckle swelling. Sometimes the drs felt he may have had psoriatic arthritis, but have always stuck with the spondy diagnosis since it was made, about 6 months after the initial JRA diagnosis. He began to have back involvement, which the dr found to be inflammation of his pelvic rim. That is when she diagnosed him with spondylitis. Overall, is now doing well. We were lucky in that he did not miss a lot of school. He did however, not participate in a lot of extra curricular's as he had planned to do. He was big into baseball and volleyball, but when the arthritis hit, he lost the ability to run for about 2 years. By the time the meds kicked in well enough to allow that, he was behind the other guys and sports being quite competitive where we are, he did not feel he could compete well enough, so he did not try. He did play ball locally for a couple of summers at first, but did not keep up with it. He did well in school, and once he was on methotrexate which is the DMARD that really helped him, he was physically much better. He did not get as sick in high school as he used to in grammar school. The hardest thing was getting him to keep up with the meds, and drs visits and now that he is older, he does not keep up with taking care of himself. He has days now when he has pain, and there is not much I can do, but encourage him to go back to the dr and start on meds again. The drs tell me this is quite common with kids with chronic illness that as they get older, they don't always do what they should. A slit lamp eye test is simply the eye dr dilating the pupils with special drops and then using a special light to look for inflammation of the eye. Arthritis of the eye, uveitis, can happen and there are no symptoms you can see by just looking. There are several kids on the list with this. I will say, this is the one dr does keep up with. When he was first diagnosed, he went every three months for the test. After one year clear, he started going every six months. For seven years after diagnosis the eye dr said, he should come for the test every six months. It is very important as blindness or other vision problems can happen if it goes undiagnosed. It is treatable if inflammation is found. I hope this has helped, and ask any questions you might have. There is a lot of help here on the list, Michele ( 19, spondy) ________________________________ From: [mailto: ] On Behalf Of nancy barnes Sent: Tuesday, December 12, 2006 9:10 AM Subject: RE: new to group Hi , thank you for your kind welcome. I was looking over the website and her symptoms sounds most like JSpA as her focus of pain is hips, knees, and sometimes heels...except for two things...under diagnosis, did I misunderstand that they usually do not have a positive ANA , which she does - and the drs repeated comments on the apparent dammage to the distal joints in her fingers..Unless her RF comes back positive, I think it is worth mentioning to the rheumy and will do so at her next appt. How is your son doing? How was high school for him with the illness? This combination of illnesses is just ruiing high school for . (she has missed two semesters)..it breaks my heart...we are hoping to get enough of a handle on her pain so she can be fully involved in her senior year... Thank you for telling me about spondylitis - I am open to anything that might help get a proper diagnosis and treatment! By the way, what is a slit lamp test eye exam and uveitis? I will let you know what transpires. Thanks again for your input. " Tepper, Michele " <MTepper@... <mailto:MTepper%40ftportfolios.com> > wrote: Hi and welcome. Yes you belong. At her age, I would look into spondylitis as a possibility. Check out the symptoms of it at www.spondylitis.org <http://www.spondylitis.org/ <http://www.spondylitis.org/> > or www.arthritis.org <http://www.arthritis.org/ <http://www.arthritis.org/> > and see if any of them fit your daughter. Make sure to get a slit lamp test eye exam to check for uveitis. An ANA positive girl is more susceptible to that. Let us know how she is doing, Michele ( 19, spondy) ________________________________ From: <mailto: %40> [mailto: <mailto: %40> ] On Behalf Of nancy barnes Sent: Friday, December 08, 2006 3:06 AM <mailto: %40> Subject: new to group hi everyone, I am new to the group, and not even sure if we 'qualify' for this group...I thought it was for JA but another message said JRA...we don't have a definitive diagnosis yet... My daughter is 16. She has always been extremely active and athletic, and also always had pain....from her feet waking her in the night as a toddler to numerous bouts of tendonitis in knees and shoulders throughout grade school to high school...but pushed through the pain with lots of advil because her sports defined her. She has always had chronic respiratory infections as well. About two years ago, she began getting sicker...mono and more respiratory infections. Six months later, she received her first diagnosis...CVID, a primary immune deficiency. She played most of her water polo season last year but became progressively more ill, and she began infusions January - we thought she would now start to improve. Early Feb, she came down with viral meningitis. Since that time, she has had chronic daily migraines and leg pain that never ceases. Spinal CT was done to rule out lesions. In May saw peds rheumo at UCLA. CRP and ANA both positive; dr not sure if after effects of meningitis. Noticed rigidity in distal finger joints and signs of past inflammation. My daugther was having a bad flare of bursitis in her hip. Dr put her on anaprox. July, her blood work was okay, although her pain was no better. In Aug, stomach was so bad, dr removed her from Anaprox...She also joined a ped pain mgmt program at UCLA at this time, but it has not helped either. Sept when hospitalized for IV treatment, had vasculitis...October tests CRP and ANA were high again so rheumo started Mobic. In Nov, the ENT took her off all anti-inflammatory meds in prep for surgery...my daughter did not think Mobic was helping her at all until she stopped it...her hips and knees were excruciating over Thanksgiving. Surgery postponed...medically unstable... Saw rheumo a few days ago. Daughter's left knee was swollen..although her joints aren't often visibly swollen. Dr says definitely arthritis...not certain what kind...tested RF but no results yet. If I understand correctly, her IVIG infusions make the diagnosis more difficult. It has been a long, frustrating year...my daughter has missed almost two semesters of school now...we just finally got an IEP for her...one more battle...she wants more than anything to have less pain, to return to school, and to play water polo her senior year.... Whether we belong in this group or not, thanks for listening... mom to , 16, arthritis, CVID, migraines --------------------------------- Access over 1 million songs - Music Unlimited. 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Guest guest Posted December 12, 2006 Report Share Posted December 12, 2006 I just received a phone call from the rheumy on 's blood results...apparently she tested her for the HLA-B27 marker and it was negative, as was the RF, but she said only about 15% of jra kids actually show positive RF. They are going to be putting her in the hospital soon to start IV antibiotics for a sinus infection she has had 4 months and call in specialists for some other things (neuro, more rheumo, dietary, etc) = ( I just wish they could wait until after Christmas, but they are worried her nutritional status is affecting her kidneys...and the infection in her system is affecting inflammation in her body...it would be interesting to see if helping infection relieved the increase in her migraines...that was part of the purpose of surgery they cancelled....she is a great kid but she can be a stubborn girl...and not caring too much to take care of herself right now....so she's breaking mom's heart..... You said it can be spondy even without positive HLA-B27 marker? There seems to be a lot of overlap in symptoms between juvenille spondy and jra... Well, thanks for listening and sharing...I appreciate it. " Tepper, Michele " <MTepper@...> wrote: has a positive ANA, negative RF. What the dr may check for, in looking for a spondy diagnosis with the blood work, is a positive HLA-B27 marker. Now, is negative for that, but is still spondy. If you are positive, you may have more organ involvement. Either way, the diagnosis, as we were told, is based on symptoms. had a lot of ankle involvement, particularly the Achilles tendon. His fingers are also involved, mostly with knuckle swelling. Sometimes the drs felt he may have had psoriatic arthritis, but have always stuck with the spondy diagnosis since it was made, about 6 months after the initial JRA diagnosis. He began to have back involvement, which the dr found to be inflammation of his pelvic rim. That is when she diagnosed him with spondylitis. Overall, is now doing well. We were lucky in that he did not miss a lot of school. He did however, not participate in a lot of extra curricular's as he had planned to do. He was big into baseball and volleyball, but when the arthritis hit, he lost the ability to run for about 2 years. By the time the meds kicked in well enough to allow that, he was behind the other guys and sports being quite competitive where we are, he did not feel he could compete well enough, so he did not try. He did play ball locally for a couple of summers at first, but did not keep up with it. He did well in school, and once he was on methotrexate which is the DMARD that really helped him, he was physically much better. He did not get as sick in high school as he used to in grammar school. The hardest thing was getting him to keep up with the meds, and drs visits and now that he is older, he does not keep up with taking care of himself. He has days now when he has pain, and there is not much I can do, but encourage him to go back to the dr and start on meds again. The drs tell me this is quite common with kids with chronic illness that as they get older, they don't always do what they should. A slit lamp eye test is simply the eye dr dilating the pupils with special drops and then using a special light to look for inflammation of the eye. Arthritis of the eye, uveitis, can happen and there are no symptoms you can see by just looking. There are several kids on the list with this. I will say, this is the one dr does keep up with. When he was first diagnosed, he went every three months for the test. After one year clear, he started going every six months. For seven years after diagnosis the eye dr said, he should come for the test every six months. It is very important as blindness or other vision problems can happen if it goes undiagnosed. It is treatable if inflammation is found. I hope this has helped, and ask any questions you might have. There is a lot of help here on the list, Michele ( 19, spondy) ________________________________ From: [mailto: ] On Behalf Of nancy barnes Sent: Tuesday, December 12, 2006 9:10 AM Subject: RE: new to group Hi , thank you for your kind welcome. I was looking over the website and her symptoms sounds most like JSpA as her focus of pain is hips, knees, and sometimes heels...except for two things...under diagnosis, did I misunderstand that they usually do not have a positive ANA , which she does - and the drs repeated comments on the apparent dammage to the distal joints in her fingers..Unless her RF comes back positive, I think it is worth mentioning to the rheumy and will do so at her next appt. How is your son doing? How was high school for him with the illness? This combination of illnesses is just ruiing high school for . (she has missed two semesters)..it breaks my heart...we are hoping to get enough of a handle on her pain so she can be fully involved in her senior year... Thank you for telling me about spondylitis - I am open to anything that might help get a proper diagnosis and treatment! By the way, what is a slit lamp test eye exam and uveitis? I will let you know what transpires. Thanks again for your input. " Tepper, Michele " <MTepper@... <mailto:MTepper%40ftportfolios.com> > wrote: Hi and welcome. Yes you belong. At her age, I would look into spondylitis as a possibility. Check out the symptoms of it at www.spondylitis.org <http://www.spondylitis.org/ <http://www.spondylitis.org/> > or www.arthritis.org <http://www.arthritis.org/ <http://www.arthritis.org/> > and see if any of them fit your daughter. Make sure to get a slit lamp test eye exam to check for uveitis. An ANA positive girl is more susceptible to that. Let us know how she is doing, Michele ( 19, spondy) ________________________________ From: <mailto: %40> [mailto: <mailto: %40> ] On Behalf Of nancy barnes Sent: Friday, December 08, 2006 3:06 AM <mailto: %40> Subject: new to group hi everyone, I am new to the group, and not even sure if we 'qualify' for this group...I thought it was for JA but another message said JRA...we don't have a definitive diagnosis yet... My daughter is 16. She has always been extremely active and athletic, and also always had pain....from her feet waking her in the night as a toddler to numerous bouts of tendonitis in knees and shoulders throughout grade school to high school...but pushed through the pain with lots of advil because her sports defined her. She has always had chronic respiratory infections as well. About two years ago, she began getting sicker...mono and more respiratory infections. Six months later, she received her first diagnosis...CVID, a primary immune deficiency. She played most of her water polo season last year but became progressively more ill, and she began infusions January - we thought she would now start to improve. Early Feb, she came down with viral meningitis. Since that time, she has had chronic daily migraines and leg pain that never ceases. Spinal CT was done to rule out lesions. In May saw peds rheumo at UCLA. CRP and ANA both positive; dr not sure if after effects of meningitis. Noticed rigidity in distal finger joints and signs of past inflammation. My daugther was having a bad flare of bursitis in her hip. Dr put her on anaprox. July, her blood work was okay, although her pain was no better. In Aug, stomach was so bad, dr removed her from Anaprox...She also joined a ped pain mgmt program at UCLA at this time, but it has not helped either. Sept when hospitalized for IV treatment, had vasculitis...October tests CRP and ANA were high again so rheumo started Mobic. In Nov, the ENT took her off all anti-inflammatory meds in prep for surgery...my daughter did not think Mobic was helping her at all until she stopped it...her hips and knees were excruciating over Thanksgiving. Surgery postponed...medically unstable... Saw rheumo a few days ago. Daughter's left knee was swollen..although her joints aren't often visibly swollen. Dr says definitely arthritis...not certain what kind...tested RF but no results yet. If I understand correctly, her IVIG infusions make the diagnosis more difficult. It has been a long, frustrating year...my daughter has missed almost two semesters of school now...we just finally got an IEP for her...one more battle...she wants more than anything to have less pain, to return to school, and to play water polo her senior year.... Whether we belong in this group or not, thanks for listening... mom to , 16, arthritis, CVID, migraines --------------------------------- Access over 1 million songs - Music Unlimited. 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Guest guest Posted December 12, 2006 Report Share Posted December 12, 2006 - Soo sorry to hear about 's struggles. What hospital is she going to be in? I hope that they find some answers for you SOON!!! We're praying for you guys - Alia and Caroline, age 4, poly and uveitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2006 Report Share Posted December 14, 2006 Hi . I hope the antibiotics knock out that infection. It sure will affect the inflammation. Yes there is a lot of overlap with the two, that is why most kids are diagnosed with JRA and then as the dr observes more symptoms, diagnosis can change. My understanding with was that as the dr observed that it was actually more the areas where the tendons were showing the inflammation that is when she added or changed the diagnosis to spondy. There is also a test where the dr measures their back as they bend to touch their toes. could not touch his toes when the arthritis began (something I did not realize until the dr did this test) but once he began the methotrexate he become more flexible as the inflammation was calmed down by the med. Now I will still ask him to touch his toes for me, so I can see he can still move. I hope is feeling better soon. I totally understand those stubborn kids! Michele ( 19, spondy) ________________________________ From: [mailto: ] On Behalf Of nancy barnes Sent: Tuesday, December 12, 2006 2:23 PM Subject: RE: new to group I just received a phone call from the rheumy on 's blood results...apparently she tested her for the HLA-B27 marker and it was negative, as was the RF, but she said only about 15% of jra kids actually show positive RF. They are going to be putting her in the hospital soon to start IV antibiotics for a sinus infection she has had 4 months and call in specialists for some other things (neuro, more rheumo, dietary, etc) = ( I just wish they could wait until after Christmas, but they are worried her nutritional status is affecting her kidneys...and the infection in her system is affecting inflammation in her body...it would be interesting to see if helping infection relieved the increase in her migraines...that was part of the purpose of surgery they cancelled....she is a great kid but she can be a stubborn girl...and not caring too much to take care of herself right now....so she's breaking mom's heart..... You said it can be spondy even without positive HLA-B27 marker? There seems to be a lot of overlap in symptoms between juvenille spondy and jra... Well, thanks for listening and sharing...I appreciate it. " Tepper, Michele " <MTepper@... <mailto:MTepper%40ftportfolios.com> > wrote: has a positive ANA, negative RF. What the dr may check for, in looking for a spondy diagnosis with the blood work, is a positive HLA-B27 marker. Now, is negative for that, but is still spondy. If you are positive, you may have more organ involvement. Either way, the diagnosis, as we were told, is based on symptoms. had a lot of ankle involvement, particularly the Achilles tendon. His fingers are also involved, mostly with knuckle swelling. Sometimes the drs felt he may have had psoriatic arthritis, but have always stuck with the spondy diagnosis since it was made, about 6 months after the initial JRA diagnosis. He began to have back involvement, which the dr found to be inflammation of his pelvic rim. That is when she diagnosed him with spondylitis. Overall, is now doing well. We were lucky in that he did not miss a lot of school. He did however, not participate in a lot of extra curricular's as he had planned to do. He was big into baseball and volleyball, but when the arthritis hit, he lost the ability to run for about 2 years. By the time the meds kicked in well enough to allow that, he was behind the other guys and sports being quite competitive where we are, he did not feel he could compete well enough, so he did not try. He did play ball locally for a couple of summers at first, but did not keep up with it. He did well in school, and once he was on methotrexate which is the DMARD that really helped him, he was physically much better. He did not get as sick in high school as he used to in grammar school. The hardest thing was getting him to keep up with the meds, and drs visits and now that he is older, he does not keep up with taking care of himself. He has days now when he has pain, and there is not much I can do, but encourage him to go back to the dr and start on meds again. The drs tell me this is quite common with kids with chronic illness that as they get older, they don't always do what they should. A slit lamp eye test is simply the eye dr dilating the pupils with special drops and then using a special light to look for inflammation of the eye. Arthritis of the eye, uveitis, can happen and there are no symptoms you can see by just looking. There are several kids on the list with this. I will say, this is the one dr does keep up with. When he was first diagnosed, he went every three months for the test. After one year clear, he started going every six months. For seven years after diagnosis the eye dr said, he should come for the test every six months. It is very important as blindness or other vision problems can happen if it goes undiagnosed. It is treatable if inflammation is found. I hope this has helped, and ask any questions you might have. There is a lot of help here on the list, Michele ( 19, spondy) ________________________________ From: <mailto: %40> [mailto: <mailto: %40> ] On Behalf Of nancy barnes Sent: Tuesday, December 12, 2006 9:10 AM <mailto: %40> Subject: RE: new to group Hi , thank you for your kind welcome. I was looking over the website and her symptoms sounds most like JSpA as her focus of pain is hips, knees, and sometimes heels...except for two things...under diagnosis, did I misunderstand that they usually do not have a positive ANA , which she does - and the drs repeated comments on the apparent dammage to the distal joints in her fingers..Unless her RF comes back positive, I think it is worth mentioning to the rheumy and will do so at her next appt. How is your son doing? How was high school for him with the illness? This combination of illnesses is just ruiing high school for . (she has missed two semesters)..it breaks my heart...we are hoping to get enough of a handle on her pain so she can be fully involved in her senior year... Thank you for telling me about spondylitis - I am open to anything that might help get a proper diagnosis and treatment! By the way, what is a slit lamp test eye exam and uveitis? I will let you know what transpires. Thanks again for your input. " Tepper, Michele " <MTepper@... <mailto:MTepper%40ftportfolios.com> <mailto:MTepper%40ftportfolios.com> > wrote: Hi and welcome. Yes you belong. At her age, I would look into spondylitis as a possibility. Check out the symptoms of it at www.spondylitis.org <http://www.spondylitis.org/ <http://www.spondylitis.org/> <http://www.spondylitis.org/ <http://www.spondylitis.org/> > > or www.arthritis.org <http://www.arthritis.org/ <http://www.arthritis.org/> <http://www.arthritis.org/ <http://www.arthritis.org/> > > and see if any of them fit your daughter. Make sure to get a slit lamp test eye exam to check for uveitis. An ANA positive girl is more susceptible to that. Let us know how she is doing, Michele ( 19, spondy) ________________________________ From: <mailto: %40> <mailto: %40> [mailto: <mailto: %40> <mailto: %40> ] On Behalf Of nancy barnes Sent: Friday, December 08, 2006 3:06 AM <mailto: %40> <mailto: %40> Subject: new to group hi everyone, I am new to the group, and not even sure if we 'qualify' for this group...I thought it was for JA but another message said JRA...we don't have a definitive diagnosis yet... My daughter is 16. She has always been extremely active and athletic, and also always had pain....from her feet waking her in the night as a toddler to numerous bouts of tendonitis in knees and shoulders throughout grade school to high school...but pushed through the pain with lots of advil because her sports defined her. She has always had chronic respiratory infections as well. About two years ago, she began getting sicker...mono and more respiratory infections. Six months later, she received her first diagnosis...CVID, a primary immune deficiency. She played most of her water polo season last year but became progressively more ill, and she began infusions January - we thought she would now start to improve. Early Feb, she came down with viral meningitis. Since that time, she has had chronic daily migraines and leg pain that never ceases. Spinal CT was done to rule out lesions. In May saw peds rheumo at UCLA. CRP and ANA both positive; dr not sure if after effects of meningitis. Noticed rigidity in distal finger joints and signs of past inflammation. My daugther was having a bad flare of bursitis in her hip. Dr put her on anaprox. July, her blood work was okay, although her pain was no better. In Aug, stomach was so bad, dr removed her from Anaprox...She also joined a ped pain mgmt program at UCLA at this time, but it has not helped either. Sept when hospitalized for IV treatment, had vasculitis...October tests CRP and ANA were high again so rheumo started Mobic. In Nov, the ENT took her off all anti-inflammatory meds in prep for surgery...my daughter did not think Mobic was helping her at all until she stopped it...her hips and knees were excruciating over Thanksgiving. Surgery postponed...medically unstable... Saw rheumo a few days ago. Daughter's left knee was swollen..although her joints aren't often visibly swollen. Dr says definitely arthritis...not certain what kind...tested RF but no results yet. If I understand correctly, her IVIG infusions make the diagnosis more difficult. It has been a long, frustrating year...my daughter has missed almost two semesters of school now...we just finally got an IEP for her...one more battle...she wants more than anything to have less pain, to return to school, and to play water polo her senior year.... Whether we belong in this group or not, thanks for listening... mom to , 16, arthritis, CVID, migraines --------------------------------- Access over 1 million songs - Music Unlimited. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 Hi : I just went to talk to the peoplo at the Drake institute in Los Angeles. They claim that they were doing biofeeeback to a child to help his add symptoms and thy noticed that his autism symptoms starting to disappear.,. It was a lucky find. Now they are treating children with great success for autism. I don't know this by expertience, I am only repeting what they said in the orientation meeting, You might want to check this out. Good luck., <emmafaithparker@...> wrote: Hi, I am new to this group. I have a four year old daughter who has epilepsy and autism. I am looking for any information you would have on how we could help her. She has not been on meds for almost 2 years now. (She was diagnosed with epilepsy at 10 months old). The meds we tried either didn't work or she was alergic to them. We have had good results using homeopathy. The longest she has gone seizure free is 7 months. The is currently also on the GFCF diet. I know that her seizures and autism are related and that there is something out there that can help her. We would appreciate any help you would have. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2007 Report Share Posted January 25, 2007 I have been finding or inventing coconut oil recipes a quite a few months now. The object has been to find variety to consume 3-4 tablespoons per day (to get the recommended lauric acid). Here are a few: 1. Coriander pesto - 1 cup of fresh coriander (cilanto), 1 cup of almonds, two garlic cloves, juice of one lemon, 6 tablespoons of virgin coconut oil. Put in food processor and blend to a paste. Delicious and also good for chelating heavy metals. 2. Popcorn - 1 /3 cup of popping corn, 1/3 cup of coconut oil. Heat the oil and add the corn and wait until it finishes popping. Shake the pot after the corn starts popping. Makes about 1.5 litres of healthy popcorn. Add sea salt (good minerals) to suit taste. 3. Smoothy - add to favourite smoothy. I use alkaline/ionized/antioxidant/ water (pH 10, ORP about -ve 300 millivolts), coconut oil, raw egg, psyllium husks, zeolite powder, whey protein, carob powder. It is great for boosting the immune system and a good meal replacement. 4. Before cooking meat, add lots of garlic and ginger. After the food is cooked, poor the flavoured oil over fresh cooked brown rice. Add other herbs if more flavour is required. I also use the oil to poor over salads. I sometimes also add some soy sauce for taste. 5. Mashed potatoes - skin on. After cooked, add coconut oil, milk, butter, cheese and salt and put in food processor. Delicious. I sometimes add coriander and garlic for a different taste. 6. Massage oil & maisturiser. Its all we use. I add 5 ml of essential oil (lavender usually) to 200 ml of coconut oil. I usually heat the oil to melt and then add the lavender and place the container in the fridge to set. Then it seems to stay a cream in bathroom. In a massage bottle, it seems to remain a liquid, although that will change in winter. A squeeze bottle is better because it can still be squeezed out. As soon as it hits the body it melts. A great healthy way of getting the oil into your skin. We now never use sunscreen. It is also very good to use as a pre wash hair conditioner. It also gets rid of dandruff. I have had toenail fungus so I pour some on my socks before I put my shoes on. The fungus has now gone, but that is probably because I have generally alkalized my body. I hope these iseas are of use. > > hi everyone. just took my first tblsp of Spectrum organic unrefined > coconut oil! have been reading about all the positive health benefits > from its use. any pointers or tips are most assuredly appreciated!! > hope to learn alot from all of you. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2007 Report Share Posted January 25, 2007 I have read that the average American Omega 6/Omega 3 is about 20:1 and it should be more like 1:1. So by using virgin coconut oil instead of Omega 6 oils, you will be probably getting a heathier balance. I have also found that if you focus on alkalizing your system, candida and other acid issues will cease to exist. And that includes consuming products that are antiviral and antibacterial like coconut oil and olive leaf extract. Since I have started focusing on alkalizing, I have cured a 20 year insmonia and depression problem, a 15 year old wart has dropped off, toenail fungus has disappeared, arthritis and other pains have gone, liver function has improved, etc. My candida symptoms have also gone away. Coconut oil is just one of my strategies. My urine pH has climbed from pH 5.0 to over 7.0 and my urine ORP has improved from a +ve millivolt figure to -ve 120 and getting better all the time. That has all happened in less than 6 months. ORP stands for Oxygen Reduction Potential. It is a measure of antioxidant value. I now focus on have as much -ve ORP food and drink as possible. Freshly picked food has a -ve ORP. Supermarket food has a +ve ORP. Tap water has a +ve ORP and ionized water has a -ve ORP. Vitamin C in tap water changes it from a +ve ORP to a negative. It has been said that the higher negative ORP of your urine, the healthier you are. Cancer, diabetes, heart disease, etc cannot exist in an alkaline body and one that has a high negative ORP. Hope this helps. > > Hi, > > Just finding out about the benefits of coconut oil, mostly via another > gruop, i.e., candida. Curious to know the common wisdom > regarding how much to have daily and what other sorts of dietary > changes are recommended (if any) to get the maximum benefits. For > example, does one need to balance it will other types of oils? Can > one eat primarily coconut oil and stop all other kinds of fats, or is > that not recommended? > > Thanks, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2007 Report Share Posted January 25, 2007 Hi , Thank's for the great report. Three years ago when I was seeking a natural way to lower blood pressure, I got tested for ph by Terry Chamberlain and boy was I acidic, below the low 5.0 point. This was a shocker when it was clear to me what the problem was. So then started to reverse it (in a lot of ways) and hope for repair. After six months of hard work the number was still only 5.4 or so, and that was disappointing. But I guess it takes awhile, cause I checked last month and it was 6.7 and reading your post did it again this morning and it was 6.9, so no wonder I feel so much better. I finally have an alkaline body, in which as you pointed out, diseases cannot live. VCO has been a big help in this direction. Ross Re: new to group I have read that the average American Omega 6/Omega 3 is about 20:1 and it should be more like 1:1. So by using virgin coconut oil instead of Omega 6 oils, you will be probably getting a heathier balance. I have also found that if you focus on alkalizing your system, candida and other acid issues will cease to exist. And that includes consuming products that are antiviral and antibacterial like coconut oil and olive leaf extract. Since I have started focusing on alkalizing, I have cured a 20 year insmonia and depression problem, a 15 year old wart has dropped off, toenail fungus has disappeared, arthritis and other pains have gone, liver function has improved, etc. My candida symptoms have also gone away. Coconut oil is just one of my strategies. My urine pH has climbed from pH 5.0 to over 7.0 and my urine ORP has improved from a +ve millivolt figure to -ve 120 and getting better all the time. That has all happened in less than 6 months. ORP stands for Oxygen Reduction Potential. It is a measure of antioxidant value. I now focus on have as much -ve ORP food and drink as possible. Freshly picked food has a -ve ORP. Supermarket food has a +ve ORP. Tap water has a +ve ORP and ionized water has a -ve ORP. Vitamin C in tap water changes it from a +ve ORP to a negative. It has been said that the higher negative ORP of your urine, the healthier you are. Cancer, diabetes, heart disease, etc cannot exist in an alkaline body and one that has a high negative ORP. Hope this helps. > > Hi, > > Just finding out about the benefits of coconut oil, mostly via another > gruop, i.e., candida. Curious to know the common wisdom > regarding how much to have daily and what other sorts of dietary > changes are recommended (if any) to get the maximum benefits. For > example, does one need to balance it will other types of oils? Can > one eat primarily coconut oil and stop all other kinds of fats, or is > that not recommended? > > Thanks, > > ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.432 / Virus Database: 268.17.10/651 - Release Date: 1/24/2007 6:48 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2007 Report Share Posted January 25, 2007 Very interesting Can you direct me to any research/publications on you protocols. Cheers, Doug Re: new to group I have read that the average American Omega 6/Omega 3 is about 20:1 and it should be more like 1:1. So by using virgin coconut oil instead of Omega 6 oils, you will be probably getting a heathier balance. I have also found that if you focus on alkalizing your system, candida and other acid issues will cease to exist. And that includes consuming products that are antiviral and antibacterial like coconut oil and olive leaf extract. Since I have started focusing on alkalizing, I have cured a 20 year insmonia and depression problem, a 15 year old wart has dropped off, toenail fungus has disappeared, arthritis and other pains have gone, liver function has improved, etc. My candida symptoms have also gone away. Coconut oil is just one of my strategies. My urine pH has climbed from pH 5.0 to over 7.0 and my urine ORP has improved from a +ve millivolt figure to -ve 120 and getting better all the time. That has all happened in less than 6 months. ORP stands for Oxygen Reduction Potential. It is a measure of antioxidant value. I now focus on have as much -ve ORP food and drink as possible. Freshly picked food has a -ve ORP. Supermarket food has a +ve ORP. Tap water has a +ve ORP and ionized water has a -ve ORP. Vitamin C in tap water changes it from a +ve ORP to a negative. It has been said that the higher negative ORP of your urine, the healthier you are. Cancer, diabetes, heart disease, etc cannot exist in an alkaline body and one that has a high negative ORP. Hope this helps. > > Hi, > > Just finding out about the benefits of coconut oil, mostly via another > gruop, i.e., candida. Curious to know the common wisdom > regarding how much to have daily and what other sorts of dietary > changes are recommended (if any) to get the maximum benefits. For > example, does one need to balance it will other types of oils? Can > one eat primarily coconut oil and stop all other kinds of fats, or is > that not recommended? > > Thanks, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2007 Report Share Posted February 10, 2007 Have you looked into the Specific Carbohydrate Diet? It's similar to gf/cf but healthier - you cut out grains and potato to allow the gut to recover and the bad flora to be replaced by good ones (using probiotics as well). It sounds hard but we started it just after Christmas, after a year on keto with no improvement, and to have unlimited portions, fruit and honey seems like heaven to my 8 year old! You can do lots of baking with eggs and ground almonds as well. He eats a lot of soups and stews and doesn't seem to miss bread and pasta at all. We noticed within a month that he was calmer, with better eye contact and attention, and better sleep. He is starting to regain some of his lost skills, such as feeding himself. We've just had an EEG which was hugely improved and are waiting to have a sleep EEG to see if his sleep activity has decreased (he has Landau Kleffner syndrome, so his seizure activity is subclinical). The SCD was developed to help gut disorders, but has proved to be effective for autism and seizures as well, as it solves the nutritional problems right from where they begin, ie with incomplete digestion, and stops the toxins which affect brain function. Here is the website: http://www.breakingtheviciouscycle.info/ Edinburgh ----Original Message Follows---- From: " wwme2001 " <theinmans@...> Reply- Subject: [ ] new to group/good docs. in MO Date: Tue, 23 Jan 2007 17:36:41 -0000 hi there, i am new to this site. i just recently watched a dvd by dr. h. clark and some of the parasites, mercury, etc. that my cause seiuzres. My son has had seizures since he was 3 (he is now 8 yrs. old). We are currently on the ketogenic diet to help control his seizures as well as 3 meds. (phenobarb, clorazapate & felbatol.) We want so badly for him to be off of this diet/meds. He continues to have seizres about every 7-10 days. He mostly has tonic clonics and tonics/atonics (and drop seizures.) We have been on the diet now for over 2 years and he is almost at the point (seizure frequency) of being where he was when we began the diet. He also has some mild autistic traits that have slowly worsened over the last couple of years. We have tried before this, seing an alternative med. dr. but with his prices, we soon had to stop. Before seeing any major results. We did put him on a no dairy, yeast or sugar diet and that did help a bit. Along with drops/shots for mold sensitivity. When he was being tested for mold at the office he did have a seizure after receiving the injection-that was the first time we saw a clear response right away. There have been times where he's been in a basement or other room with the smell of mold/musty old wood/clothes and the next day he had anywhere from 8-20 tonic clonic seizures. We cannot get his current neurol. to do anything with this information. He hasn't " found " any related studies discussing this out there (as of 3.5 years ago) We know it has to be something with allergens, mold or something culminating this. We are looking for any good docs. in the st. louis, mo area, we're willing to go out of town, but would like a local reference first. Thanks. Very interesting site and I'm thankful for all the good information out there. I look forward to being a part of this website. I know we'll find a cure for my son. It's just a matter of time! _________________________________________________________________ MSN Hotmail is evolving – check out the new Windows Live Mail http://ideas.live.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2007 Report Share Posted March 23, 2007 You are not alone! The only advice I can give is STICK TO THE DIET - I am about 10 days in and the die off is still bad (mine is in the form of constipation and brain fog), but my weight has finally startd to shift - I am down about 5 lbs already. I am dedicating 6 months to a PURE diet and protocol supplements - I am determined to break this cycle once and for all - if you want a buddy to talk to - email me anytime - it seems we are at about the same place. I actually did threelac before too, but I am rotating my supplements now - I am going to do a month on candigone (what I am on now) and then switch back to threelac for a month, then etc. I am also a mom and can relate to feeling pregant again - I also work out 4 days a week hardcore at the gym and could not lose weight at all - I am wondering about the eating something off limits though, I have heard from too many people that you have to start all over agiain if you give your body anything that feeds the candida - but then again there is sooo much contradictory information out there sometimes I don't know what to believe!! Anyhow - feel free to write me any time - I would love to chat with someone who undestands how awful this is!! Good Luck and stay positive - we can beat this!!! Cat > > I am new to this group and overjoyed that I found it. I've read so > many messages and finally see that I'm not alone in my misery. My > symptoms are water retention due to food intolerances and weight > gain. I am maintaining my weight but can't seem to lose no matter > how much I exercise and eat healthy. I can walk an hour a day and > nothing comes of it except sore muscles and exhaustion. I've been > taking threelac and once again the die off symptoms came on after 2 > days of dosing. It hit like a brick too. My muslces feel like lead, > my throat is burning sore and my sinuses are goin nuts. I researched > die off symptoms and to slow the release of toxins, it said to eat a > small amount of something that is off limits. So I did and I feel a > little better. I've fought this thing before and relapsed and now > realize that I have to make life changes. I just feel like I hit a > brick wall and that I will never get better and lose the weight. I > have great willpower because the will to get healthy is so much > stronger than the cravings. If I could go without the die off > symptoms, this would be so easy. Sometimes I'm glad I get the die > off part but the exhaustion gets so bad. I know taking a ginger > infused bath helps and putting in sea salt helps as well. I just > need words of encouragement, this is so hard and scary. I've never > been this heavy without being pregnant. I fear I will never lsoe the > weight. Is there something about candida that makes it impossible to > lose weight or build muscle? sorry this is so long > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2007 Report Share Posted March 26, 2007 Once you have the candida under control, you will lose weight easily. I've lost 61kgs (134.48 pounds) on my 1 1/2 years on this diet and it was actually very easy. Once you start losing, you really lose! Don't despair, just hold on and things will begin to improve. Keen New to group I am new to this group and overjoyed that I found it. I've read so many messages and finally see that I'm not alone in my misery. My symptoms are water retention due to food intolerances and weight gain. I am maintaining my weight but can't seem to lose no matter how much I exercise and eat healthy. I can walk an hour a day and nothing comes of it except sore muscles and exhaustion. I've been taking threelac and once again the die off symptoms came on after 2 days of dosing. It hit like a brick too. My muslces feel like lead, my throat is burning sore and my sinuses are goin nuts. I researched die off symptoms and to slow the release of toxins, it said to eat a small amount of something that is off limits. So I did and I feel a little better. I've fought this thing before and relapsed and now realize that I have to make life changes. I just feel like I hit a brick wall and that I will never get better and lose the weight. I have great willpower because the will to get healthy is so much stronger than the cravings. If I could go without the die off symptoms, this would be so easy. Sometimes I'm glad I get the die off part but the exhaustion gets so bad. I know taking a ginger infused bath helps and putting in sea salt helps as well. I just need words of encouragement, this is so hard and scary. I've never been this heavy without being pregnant. I fear I will never lsoe the weight. Is there something about candida that makes it impossible to lose weight or build muscle? sorry this is so long Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2007 Report Share Posted July 24, 2007 Hi, See the group's PHOTOS section for the how-to. best of luck, bG > > where and how do I get to the directions for making an electric > something like you are talking about? > > I am new and am very interested in this since first reading about it in > a book which was given to me about 10 years ago. > > thanks > > thea > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2007 Report Share Posted July 24, 2007 Look in the files and photo's section. new to group where and how do I get to the directions for making an electric something like you are talking about? I am new and am very interested in this since first reading about it in a book which was given to me about 10 years ago. thanks thea ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.10.17/915 - Release Date: 7/24/2007 1:50 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2007 Report Share Posted July 24, 2007 Look in the files and photo's section. new to group where and how do I get to the directions for making an electric something like you are talking about? I am new and am very interested in this since first reading about it in a book which was given to me about 10 years ago. thanks thea ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.10.17/915 - Release Date: 7/24/2007 1:50 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2007 Report Share Posted July 24, 2007 Hi, Bob. I wonder how some people find our group. Maybe someone sends them the location, or one of the messages. But I think if they find our website they should see a notice in large letters, that if they are a newbie they should go to the files and read the message for newbies before posting a message. No big deal, but it would save them time and be fewer unnecessary message we have to go through. JMHO. Dick new to group where and how do I get to the directions for making an electric something like you are talking about? I am new and am very interested in this since first reading about it in a book which was given to me about 10 years ago. thanks thea ---------------------------------------------------------- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.10.17/915 - Release Date: 7/24/2007 1:50 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2007 Report Share Posted July 24, 2007 Hi, Bob. I wonder how some people find our group. Maybe someone sends them the location, or one of the messages. But I think if they find our website they should see a notice in large letters, that if they are a newbie they should go to the files and read the message for newbies before posting a message. No big deal, but it would save them time and be fewer unnecessary message we have to go through. JMHO. Dick new to group where and how do I get to the directions for making an electric something like you are talking about? I am new and am very interested in this since first reading about it in a book which was given to me about 10 years ago. thanks thea ---------------------------------------------------------- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.10.17/915 - Release Date: 7/24/2007 1:50 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2007 Report Share Posted July 24, 2007 i just got my feelings hurt - . Ha! I got the web site off the site for medical information. You were listed and since I had already read a book about this subject -- I was just wanting to know more. And yes, if there was something on your homepage which would direct us to questions answered right off -- I would have seen that and gone there before posting. Good tip! --------- Forwarded message ---------- From: " Dick Rochon " <rrochon13@...> < > Date: Tue, 24 Jul 2007 13:57:32 -0700 Subject: Re: new to group Message-ID: <027501c7ce35$421528e0$6501a8c0@dick> References: <f85eun+rhe9eGroups> <001401c7ce26$b0ed76a0$2f01a8c0@hp> Hi, Bob. I wonder how some people find our group. Maybe someone sends them the location, or one of the messages. But I think if they find our website they should see a notice in large letters, that if they are a newbie they should go to the files and read the message for newbies before posting a message. No big deal, but it would save them time and be fewer unnecessary message we have to go through. JMHO. Dick new to group where and how do I get to the directions for making an electric something like you are talking about? I am new and am very interested in this since first reading about it in a book which was given to me about 10 years ago. thanks thea ---------------------------------------------------------- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.10.17/915 - Release Date: 7/24/2007 1:50 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2007 Report Share Posted July 24, 2007 Hi, Thelma. Yes, there are many sites on the internet regarding the use of electrical microcurrents and/or frequencies of current to treat physical or mental health problems. You will find this one simplified down to the basics using a simple device that anyone can put together, and the main consideration is that it is effective. Much more so than many of the others you will find. Please join the group, if you have not done so, and go to the file section on the left side of the website. Open the file section and you should find a message for newbies, and also a piece about tests done at the Albert Einstein College of Medicine regarding the killing or disabling of germs or virus of HIV and HepC. This was done in the test tube and just shows that electricity does the job. We are in the process of showing that it works in the body also. There are reports of many cases of successful treatments of various health problems in the files section also. And in the Photos section there are complete illustrated explanations for building various devices, some more little more complicated than others, but really all simple. Welcome to the group. Dick new to group where and how do I get to the directions for making an electric something like you are talking about? I am new and am very interested in this since first reading about it in a book which was given to me about 10 years ago. thanks thea ---------------------------------------------------------- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.10.17/915 - Release Date: 7/24/2007 1:50 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2007 Report Share Posted July 24, 2007 Hi, Thelma. Yes, there are many sites on the internet regarding the use of electrical microcurrents and/or frequencies of current to treat physical or mental health problems. You will find this one simplified down to the basics using a simple device that anyone can put together, and the main consideration is that it is effective. Much more so than many of the others you will find. Please join the group, if you have not done so, and go to the file section on the left side of the website. Open the file section and you should find a message for newbies, and also a piece about tests done at the Albert Einstein College of Medicine regarding the killing or disabling of germs or virus of HIV and HepC. This was done in the test tube and just shows that electricity does the job. We are in the process of showing that it works in the body also. There are reports of many cases of successful treatments of various health problems in the files section also. And in the Photos section there are complete illustrated explanations for building various devices, some more little more complicated than others, but really all simple. Welcome to the group. Dick new to group where and how do I get to the directions for making an electric something like you are talking about? I am new and am very interested in this since first reading about it in a book which was given to me about 10 years ago. thanks thea ---------------------------------------------------------- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.10.17/915 - Release Date: 7/24/2007 1:50 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2007 Report Share Posted August 17, 2007 Welcome to the group. How long has he had Lupus? What part of the States are you? You have came to a very Supportive group. RobbinGet a sneak peek of the all-new AOL.com. Quote Link to comment Share on other sites More sharing options...
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