Guest guest Posted October 18, 2006 Report Share Posted October 18, 2006 Thank you, Ginger. I am not able to get those tests at this time, much as I would like to. My husband had a severe stroke last may and it takes five months to get disability, six, actually until the check comes for the prior month. I have no health insurance and am currently paperwork blocked, thanks to the Patriot Act, from the UTMB sliding scale. Hopefully that will be cleared up by next month. We had to close down our business and have justr a few side interests that are keeping us going. This will all resolve itself in a few months when I get what I am doing built up. In the meantime I have to stay with hubby because he cannot do for himself. We do not qualify for aid. I know ll about falling through the cracks… But we are tough old roots and I feel pretty sure that I will get through fine. Yep, I have no plans for dying from the C, either : ) But it is true, none of us are getting out of here alive. Nikki Nikki I would not ignore this and assume it is liver. We can think everything is associated with liver and it isn't. Many of us will die from something other than Hep C. My brother for instance, 55, complete athlete, never drank or smoked, had the same pain and problems with heat and dehydration. Found out he had a 90% blockage in on artery and 50% in 2 others. We couldn't believe it, nor could he because of his healthy lifestyle. He was playing a tennis match and the heat and dehydration got to him for the last time and he decided he really needed to have this checked out. Anyway it is your life, but those chest pains could be heart attacks. An angiogram might be in order, at the very least a stress test. I'm not trying to diagnose you, I guess my point is we need to be careful not to blame everything on liver. We have a lot of other systems going on in our bodies. Thanks for listening Ginger __._,_.___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2006 Report Share Posted October 18, 2006 I agree with this,, you must check it out and NOT assume that its always your liver,, Swift <kswift@...> wrote: Nikki I would not ignore this and assume it is liver. We can think everything is associated with liver and it isn't. Many of us will die from something other than Hep C. My brother for instance, 55, complete athlete, never drank or smoked, had the same pain and problems with heat and dehydration. Found out he had a 90% blockage in on artery and 50% in 2 others. We couldn't believe it, nor could he because of his healthy lifestyle. He was playing a tennis match and the heat and dehydration got to him for the last time and he decided he really needed to have this checked out. Anyway it is your life, but those chest pains could be heart attacks. An angiogram might be in order, at the very least a stress test. I'm not trying to diagnose you, I guess my point is we need to be careful not to blame everything on liver. We have a lot of other systems going on in our bodies. Thanks for listening Ginger Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2006 Report Share Posted October 18, 2006 tell me about the retention enema's ,, Im really interested in what you are doing,, jaxNikki Cowan <nikkicowan@...> wrote: I am doing retention enemas with my morning urine, colloidal silver and a teaspoon of DMSO. When I first heard about urine therapy I was totally revolted, but being the curious person that I am and highly motivated from my brother’s very sad and drawn out and painful passing. I read Martha Christy’s “Your Own Perfect Medicine” and I gave it a try. It has been amazing for me and my life is back on track, I feel really good. Nikki Hi Nikki, What are you doing instead of Conventional treatment? No chest pains here, but my nerves are sure shot.. Blessings, Sheena Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 In the mornings I do a clear water enema to make room in my colon. Then I take my morning urine, a like amount of colloidal/ionic silver (I make my own and use it for tons of things) and a rounded teaspoon of 99% DMSO gel ( I get it through jeffersequine.com) and hold this in for at least 20 minutes. I usually get in my recliner in a feet up position and take a little nap. The energy is immediate and over time it seems to be correcting my sluggish bowel. Instead of one bm a day or less I have one after each meal, pretty much, which is what I have read is better for you. I used to have ulcerative colitis; no more I don’t tout this as a great cure-all for everyone, but I can tell you the difference that it has made in my life is staggering. I sleep at night, something that used to torment me. I feel good, and have enthusiasm and energy. I have almost completely stopped my insulin and I used to take 3 shots a day but my sugar is pretty good and I eat things I haven’t been able to eat in years. I do incorporate a teaspoon of cinnamon daily like my doc suggested. I am off of antidepressants. I haven’t had any viral loads taken because I just can’t afford it right now, but if the proof is in the pudding, I feel good. However, for all I know my liver is going to fall out tomorrow at 3:42 pm. But I don’t think so. Nikki From: Hepatitis C [mailto:Hepatitis C ] On Behalf Of Jackie on Sent: Thursday, October 19, 2006 12:27 AM Hepatitis C Subject: RE: Hello! tell me about the retention enema's ,, Im really interested in what you are doing,, jax Nikki Cowan <nikkicowansbcglobal (DOT) net> wrote: I am doing retention enemas with my morning urine, colloidal silver and a teaspoon of DMSO. When I first heard about urine therapy I was totally revolted, but being the curious person that I am and highly motivated from my brother’s very sad and drawn out and painful passing. I read Martha Christy’s “Your Own Perfect Medicine” and I gave it a try. It has been amazing for me and my life is back on track, I feel really good. Nikki Hi Nikki, What are you doing instead of Conventional treatment? No chest pains here, but my nerves are sure shot.. Blessings, Sheena Jackie __._,_.___ __,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 now that sounds really interesting,, you do this every day? How does this help? why the urine? Do you have any literature to read on this?Nikki Cowan <nikkicowan@...> wrote: In the mornings I do a clear water enema to make room in my colon. Then I take my morning urine, a like amount of colloidal/ionic silver (I make my own and use it for tons of things) and a rounded teaspoon of 99% DMSO gel ( I get it through jeffersequine.com) and hold this in for at least 20 minutes. I usually get in my recliner in a feet up position and take a little nap. The energy is immediate and over time it seems to be correcting my sluggish bowel. Instead of one bm a day or less I have one after each meal, pretty much, which is what I have read is better for you. I used to have ulcerative colitis; no more I don’t tout this as a great cure-all for everyone, but I can tell you the difference that it has made in my life is staggering. I sleep at night, something that used to torment me. I feel good, and have enthusiasm and energy. I have almost completely stopped my insulin and I used to take 3 shots a day but my sugar is pretty good and I eat things I haven’t been able to eat in years. I do incorporate a teaspoon of cinnamon daily like my doc suggested. I am off of antidepressants. I haven’t had any viral loads taken because I just can’t afford it right now, but if the proof is in the pudding, I feel good. However, for all I know my liver is going to fall out tomorrow at 3:42 pm. But I don’t think so. Nikki From: Hepatitis C [mailto:Hepatitis C ] On Behalf Of Jackie onSent: Thursday, October 19, 2006 12:27 AMHepatitis C Subject: RE: Hello! tell me about the retention enema's ,, Im really interested in what you are doing,, jaxNikki Cowan <nikkicowansbcglobal (DOT) net> wrote: I am doing retention enemas with my morning urine, colloidal silver and a teaspoon of DMSO. When I first heard about urine therapy I was totally revolted, but being the curious person that I am and highly motivated from my brother’s very sad and drawn out and painful passing. I read Martha Christy’s “Your Own Perfect Medicine” and I gave it a try. It has been amazing for me and my life is back on track, I feel really good. Nikki Hi Nikki, What are you doing instead of Conventional treatment? No chest pains here, but my nerves are sure shot.. Blessings, Sheena Jackie __._,_.___ __,_._,___ Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2006 Report Share Posted October 20, 2006 It helps by alleviating my symptoms, and that feels pretty good to me Yes, I try to do it every day, but not always enough time in the mornings. Urine therapy is pretty amazing. It has been around for a long time and seems to work for me. I believe that is what is relieving my diabetes, but I can’t say for sure. I bought Martha Christy’s book “Your Own Perfect Medicine”. You can read about that here: http://www.all-natural.com/urine.html and also there is much info in the files at urine_therapy Another book is The Golden Fountain, can’t remember the author off of the top of my head. As far as the other things that I combine, here is more info. Look in the files sections of these groups. 'DimethylSulfoxide-DMSO 'colloidalsilver2 For me to feel this good after feeling so badly for so long is such a blessing. Nikki From: Hepatitis C [mailto:Hepatitis C ] On Behalf Of Jackie on Sent: Thursday, October 19, 2006 11:28 PM Hepatitis C Subject: RE: Hello! now that sounds really interesting,, you do this every day? How does this help? why the urine? Do you have any literature to read on this? Nikki Cowan <nikkicowansbcglobal (DOT) net> wrote: In the mornings I do a clear water enema to make room in my colon. Then I take my morning urine, a like amount of colloidal/ionic silver (I make my own and use it for tons of things) and a rounded teaspoon of 99% DMSO gel ( I get it through jeffersequine.com) and hold this in for at least 20 minutes. I usually get in my recliner in a feet up position and take a little nap. The energy is immediate and over time it seems to be correcting my sluggish bowel. Instead of one bm a day or less I have one after each meal, pretty much, which is what I have read is better for you. I used to have ulcerative colitis; no more I don’t tout this as a great cure-all for everyone, but I can tell you the difference that it has made in my life is staggering. I sleep at night, something that used to torment me. I feel good, and have enthusiasm and energy. I have almost completely stopped my insulin and I used to take 3 shots a day but my sugar is pretty good and I eat things I haven’t been able to eat in years. I do incorporate a teaspoon of cinnamon daily like my doc suggested. I am off of antidepressants. I haven’t had any viral loads taken because I just can’t afford it right now, but if the proof is in the pudding, I feel good. However, for all I know my liver is going to fall out tomorrow at 3:42 pm. But I don’t think so. Nikki From: Hepatitis C [mailto:Hepatitis C ] On Behalf Of Jackie on Sent: Thursday, October 19, 2006 12:27 AM Hepatitis C Subject: RE: Hello! tell me about the retention enema's ,, Im really interested in what you are doing,, jax Nikki Cowan <nikkicowansbcglobal (DOT) net> wrote: I am doing retention enemas with my morning urine, colloidal silver and a teaspoon of DMSO. When I first heard about urine therapy I was totally revolted, but being the curious person that I am and highly motivated from my brother’s very sad and drawn out and painful passing. I read Martha Christy’s “Your Own Perfect Medicine” and I gave it a try. It has been amazing for me and my life is back on track, I feel really good. Nikki Hi Nikki, What are you doing instead of Conventional treatment? No chest pains here, but my nerves are sure shot.. Blessings, Sheena Jackie __._,_.___ __,_._,___ Jackie __._,_.___ __,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2006 Report Share Posted November 28, 2006 awwww she looks like a little angel :-d welcome to the group. On 11/28/06, Fox <mlynnfox@...> wrote: > > Hi there! My name is Fox - my daughter, Malorie, is 4 years old > - she has SMA type 2. She was diagnosed at 10 months old. We live in Ada, > Michigan. You can visit Malorie on her site - www.maloriefox.com. Can't > wait to chat with everyone! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2006 Report Share Posted November 30, 2006 welcome ! My name is , I am 27yrs old (soon to be the big 28 approaching 30! yikes) and have SMA type 2, diagnosed at 18 months old. I use a power chair and personal care attendants for help. I currently live in CA with my parents but lived on my own for a few yrs while getting my Masters degree. now on the big job search after graduating! I'm the new list owner to this group so should you have any questions, let me know. The list is an excellent resource. Take care, > > Hi there! My name is Fox - my daughter, Malorie, is 4 years old - she has SMA type 2. She was diagnosed at 10 months old. We live in Ada, Michigan. You can visit Malorie on her site - www.maloriefox.com. Can't wait to chat with everyone! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2006 Report Share Posted December 10, 2006 I suffer from iron overload also . Tell your doctor to send you to a hematologist so that they can do phlebotomies to get your iron levels down. Once your iron level comes down your viral load can also go down( my viral load went from 14million to 1mil after I had phlebotomies) and it increases the chance for a sustained viralogical response . I have not read anything about a pill that can reduce the iron level yet but I will find it if it is real . LOL I am this boards medical researcher and a moderator for the group . Welcome to the group Alaska hehe Hello! And greetings from the not so frozen far north country, Alaska!Thank you for accepting me into your group.I'll jump right in with a question....anyone with experience with ironoverload? Dr. says avoid iron fortified food....and he is doingresearch for a treatment for too much iron. I've read online abouthaving your blood drawn out....sounds a bit like using leaches(I joke)and I found a site that says the FDA just approved a pill? Any oneelse in the same boat?I sure appreciate the sharing of your experiences...Thanks,D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2006 Report Share Posted December 10, 2006 I forgot to ask if you know what your iron saturation % is ? Hello! And greetings from the not so frozen far north country, Alaska!Thank you for accepting me into your group.I'll jump right in with a question....anyone with experience with ironoverload? Dr. says avoid iron fortified food....and he is doingresearch for a treatment for too much iron. I've read online abouthaving your blood drawn out....sounds a bit like using leaches(I joke)and I found a site that says the FDA just approved a pill? Any oneelse in the same boat?I sure appreciate the sharing of your experiences...Thanks,D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 Hi Diane, welcome to the group! Ally On 12/11/06, Diane <ddnorman@...> wrote: And greetings from the not so frozen far north country, Alaska!Thank you for accepting me into your group.I'll jump right in with a question....anyone with experience with ironoverload? Dr. says avoid iron fortified food....and he is doing research for a treatment for too much iron. I've read online abouthaving your blood drawn out....sounds a bit like using leaches(I joke)and I found a site that says the FDA just approved a pill? Any oneelse in the same boat? I sure appreciate the sharing of your experiences...Thanks,D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 Hi Diane, welcome to the group! Ally On 12/11/06, Diane <ddnorman@...> wrote: And greetings from the not so frozen far north country, Alaska!Thank you for accepting me into your group.I'll jump right in with a question....anyone with experience with ironoverload? Dr. says avoid iron fortified food....and he is doing research for a treatment for too much iron. I've read online abouthaving your blood drawn out....sounds a bit like using leaches(I joke)and I found a site that says the FDA just approved a pill? Any oneelse in the same boat? I sure appreciate the sharing of your experiences...Thanks,D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2006 Report Share Posted December 22, 2006 Hartel wrote: > > > I just wanted to say 'Hi " to everyone and find out where we are all > from? from Dale, Mom to Katy, CVID, age 22, married Welcome ! I'm from California in the San /San Francisco end. A group that really helped me to navigate Katy's insurance was A.C.C.E.S.S. They told me what rights I had and what I was eligible for, etc. Give them a call and see what they can do to help you with insurance. Their number is 206-340-4505. Hope that helps and you can figure out a plan. In His service, dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2006 Report Share Posted December 22, 2006 Hartel wrote: > > > I just wanted to say 'Hi " to everyone and find out where we are all > from? from Dale, Mom to Katy, CVID, age 22, married Welcome ! I'm from California in the San /San Francisco end. A group that really helped me to navigate Katy's insurance was A.C.C.E.S.S. They told me what rights I had and what I was eligible for, etc. Give them a call and see what they can do to help you with insurance. Their number is 206-340-4505. Hope that helps and you can figure out a plan. In His service, dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2006 Report Share Posted December 22, 2006 Medicare sounds like a good option but it takes a long time. He will not be eligible for awhile . you may want to find a legislature to help you. I know that is how I got my SSI. It will be under him only since he is an adult. Also you may want to contact IDF and a group called Access which will walk you through the process. BARBIE Lucas CVID and Bipolar SQ IG, we live in OK now. Hartel <maryhartel@...> wrote: I just wanted to say 'Hi " to everyone and find out where we are all from? I am from Michigan and decided to join this group because my 20 yo son has CVID ( diagnosed in '99) and his medicaid is being cut off, effective Jan 31 2007. We applied for insurance through Aetna and was turned down. Of course I would like to know why? Could it be that he is high risk? Here is a brief history of Born at 36 weeks gestation with a Tracheal Esophogeal Fistula ( T.E.F.) A feeding tube was inserted right after birth. TEF repair was performed the next day. Admitted to the NNICU for one month. 3 episodes of Apnea. Came home on a monitor. Illnesses: Pneumonias.......too many hospitalizations to list. * 1989.....age 3. I take him to to the ER for spiked temp. (103) and severe vomiting and difficulty breathing ( had already been diagnosed with asthma). Chest xrays are taken and confirmed that he has double pneumonia. A bolus of amonophylin (sp) is given. He is transported to his hospital room. Still has the IV of amonophyllin in form the ER. I notice a few hours later that he is acting 'whacko'and totally out of it. He is also in an O2 tent. Nurse comes in to check him and leaves the room quickly. Comes back with his doctor and I am told that he has to be admitted to the PICU because his theophyllin levels were above 60! He has to go on a ventilator. Also a charcoal rx is given to get some of the meds out of his system. He was on the ventlator for, if I recall correctly, about 4 days. He stays in the PICU for 2 weeks and ten is transferred back on the floor for another 3 weeks. So....what turned out to be a few day stay turned out to be about a month! I will never forget that! He also has tracheomalasia, bronchomalasia, rx of sinus infections, ( has had them surgically cleaned and scoped a few times) rx of reflux, ( he had the thal fundoplication done in fall of 1996. His reflux has been greatly reduced and so far the wrap is holding. No leaks so far! Today he is 'ok' but worried that if his infusions are stopped he will get gravely ill. His last IgG level was was at 700. Before he started infusions, they were in the low 300's. We have been told by is Immumonlogist/Allergist that he will need these infusions if he wants to have a 'normal' life. So now we have to find insurance for him. Medicare? Any help or advise would be extremely appreciated. I look forward to hearing from all of you. Take care Charlotte MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2006 Report Share Posted December 22, 2006 Medicare sounds like a good option but it takes a long time. He will not be eligible for awhile . you may want to find a legislature to help you. I know that is how I got my SSI. It will be under him only since he is an adult. Also you may want to contact IDF and a group called Access which will walk you through the process. BARBIE Lucas CVID and Bipolar SQ IG, we live in OK now. Hartel <maryhartel@...> wrote: I just wanted to say 'Hi " to everyone and find out where we are all from? I am from Michigan and decided to join this group because my 20 yo son has CVID ( diagnosed in '99) and his medicaid is being cut off, effective Jan 31 2007. We applied for insurance through Aetna and was turned down. Of course I would like to know why? Could it be that he is high risk? Here is a brief history of Born at 36 weeks gestation with a Tracheal Esophogeal Fistula ( T.E.F.) A feeding tube was inserted right after birth. TEF repair was performed the next day. Admitted to the NNICU for one month. 3 episodes of Apnea. Came home on a monitor. Illnesses: Pneumonias.......too many hospitalizations to list. * 1989.....age 3. I take him to to the ER for spiked temp. (103) and severe vomiting and difficulty breathing ( had already been diagnosed with asthma). Chest xrays are taken and confirmed that he has double pneumonia. A bolus of amonophylin (sp) is given. He is transported to his hospital room. Still has the IV of amonophyllin in form the ER. I notice a few hours later that he is acting 'whacko'and totally out of it. He is also in an O2 tent. Nurse comes in to check him and leaves the room quickly. Comes back with his doctor and I am told that he has to be admitted to the PICU because his theophyllin levels were above 60! He has to go on a ventilator. Also a charcoal rx is given to get some of the meds out of his system. He was on the ventlator for, if I recall correctly, about 4 days. He stays in the PICU for 2 weeks and ten is transferred back on the floor for another 3 weeks. So....what turned out to be a few day stay turned out to be about a month! I will never forget that! He also has tracheomalasia, bronchomalasia, rx of sinus infections, ( has had them surgically cleaned and scoped a few times) rx of reflux, ( he had the thal fundoplication done in fall of 1996. His reflux has been greatly reduced and so far the wrap is holding. No leaks so far! Today he is 'ok' but worried that if his infusions are stopped he will get gravely ill. His last IgG level was was at 700. Before he started infusions, they were in the low 300's. We have been told by is Immumonlogist/Allergist that he will need these infusions if he wants to have a 'normal' life. So now we have to find insurance for him. Medicare? Any help or advise would be extremely appreciated. I look forward to hearing from all of you. Take care Charlotte MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2006 Report Share Posted December 22, 2006 You might try for disability. I do not know how long it takes for that to go through and be approved but it is worth a shot. Cassie Hartel <maryhartel@...> wrote: I just wanted to say 'Hi " to everyone and find out where we are all from? I am from Michigan and decided to join this group because my 20 yo son has CVID ( diagnosed in '99) and his medicaid is being cut off, effective Jan 31 2007. We applied for insurance through Aetna and was turned down. Of course I would like to know why? Could it be that he is high risk? Here is a brief history of Born at 36 weeks gestation with a Tracheal Esophogeal Fistula ( T.E.F.) A feeding tube was inserted right after birth. TEF repair was performed the next day. Admitted to the NNICU for one month. 3 episodes of Apnea. Came home on a monitor. Illnesses: Pneumonias.......too many hospitalizations to list. * 1989.....age 3. I take him to to the ER for spiked temp. (103) and severe vomiting and difficulty breathing ( had already been diagnosed with asthma). Chest xrays are taken and confirmed that he has double pneumonia. A bolus of amonophylin (sp) is given. He is transported to his hospital room. Still has the IV of amonophyllin in form the ER. I notice a few hours later that he is acting 'whacko'and totally out of it. He is also in an O2 tent. Nurse comes in to check him and leaves the room quickly. Comes back with his doctor and I am told that he has to be admitted to the PICU because his theophyllin levels were above 60! He has to go on a ventilator. Also a charcoal rx is given to get some of the meds out of his system. He was on the ventlator for, if I recall correctly, about 4 days. He stays in the PICU for 2 weeks and ten is transferred back on the floor for another 3 weeks. So....what turned out to be a few day stay turned out to be about a month! I will never forget that! He also has tracheomalasia, bronchomalasia, rx of sinus infections, ( has had them surgically cleaned and scoped a few times) rx of reflux, ( he had the thal fundoplication done in fall of 1996. His reflux has been greatly reduced and so far the wrap is holding. No leaks so far! Today he is 'ok' but worried that if his infusions are stopped he will get gravely ill. His last IgG level was was at 700. Before he started infusions, they were in the low 300's. We have been told by is Immumonlogist/Allergist that he will need these infusions if he wants to have a 'normal' life. So now we have to find insurance for him. Medicare? Any help or advise would be extremely appreciated. I look forward to hearing from all of you. Take care Charlotte MI www.marykay.com/cassieredinger Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2006 Report Share Posted December 22, 2006 You might try for disability. I do not know how long it takes for that to go through and be approved but it is worth a shot. Cassie Hartel <maryhartel@...> wrote: I just wanted to say 'Hi " to everyone and find out where we are all from? I am from Michigan and decided to join this group because my 20 yo son has CVID ( diagnosed in '99) and his medicaid is being cut off, effective Jan 31 2007. We applied for insurance through Aetna and was turned down. Of course I would like to know why? Could it be that he is high risk? Here is a brief history of Born at 36 weeks gestation with a Tracheal Esophogeal Fistula ( T.E.F.) A feeding tube was inserted right after birth. TEF repair was performed the next day. Admitted to the NNICU for one month. 3 episodes of Apnea. Came home on a monitor. Illnesses: Pneumonias.......too many hospitalizations to list. * 1989.....age 3. I take him to to the ER for spiked temp. (103) and severe vomiting and difficulty breathing ( had already been diagnosed with asthma). Chest xrays are taken and confirmed that he has double pneumonia. A bolus of amonophylin (sp) is given. He is transported to his hospital room. Still has the IV of amonophyllin in form the ER. I notice a few hours later that he is acting 'whacko'and totally out of it. He is also in an O2 tent. Nurse comes in to check him and leaves the room quickly. Comes back with his doctor and I am told that he has to be admitted to the PICU because his theophyllin levels were above 60! He has to go on a ventilator. Also a charcoal rx is given to get some of the meds out of his system. He was on the ventlator for, if I recall correctly, about 4 days. He stays in the PICU for 2 weeks and ten is transferred back on the floor for another 3 weeks. So....what turned out to be a few day stay turned out to be about a month! I will never forget that! He also has tracheomalasia, bronchomalasia, rx of sinus infections, ( has had them surgically cleaned and scoped a few times) rx of reflux, ( he had the thal fundoplication done in fall of 1996. His reflux has been greatly reduced and so far the wrap is holding. No leaks so far! Today he is 'ok' but worried that if his infusions are stopped he will get gravely ill. His last IgG level was was at 700. Before he started infusions, they were in the low 300's. We have been told by is Immumonlogist/Allergist that he will need these infusions if he wants to have a 'normal' life. So now we have to find insurance for him. Medicare? Any help or advise would be extremely appreciated. I look forward to hearing from all of you. Take care Charlotte MI www.marykay.com/cassieredinger Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2007 Report Share Posted January 16, 2007 Hi : Sorry to have to meet like this but I am glad that you have joined the group. Just a small note. I have been on Amitriptyline 75 mg and neurontin for nearly a year now and yes, it causes confusion, forgetfulness and added depression as far as i am concerned. The doctors told me it is probably stress that is causing this but I know better. So, I hear you. Your blog encouraged me to do my own. and I thank you for that. I feel alot better. I hope you will read my blog and give your opinion. Click on the link below, hopefully it works. Let me know. Good Luck and take care to you and your man. http://ca.360./my_profile-4aEewKE8erTcb_5AVhXhvR3_Rx3_?n= & errm=Lusp5E1rlV10lAiqhxszmso1UDJ2_d35FztRcsHpe8997XUYfehNSw-- & errc=falwaysasurvivor <alwaysasurvivor@...> wrote: Hi! I am new to this group. I would like to introduce myself. My name is . I have been living with chronic pain for the past 5 years. It has been a very frustrating 5 years for me. It took the doctors that long to find out what is wrong with me and they still are not 100% sure that what they have diagnosed me with is what is causing all of my pain.They have me diagnosed with chronic pain due damage to my nerve endings in my stomach from two major stomach surgeries that I had for ulcers. My story is blogged on my 360 site. You can click on the link at the end of this post to read it. It is quite long, but it will explain everything. I am looking forward to talking with others that have chronic pain issues. I know that everyone here will understand what I am going through a lot better then someone who does not live with chronic pain. Thank you!http://blog.360./blog-B7SdREMwd7GmmT87xeG9uaTMApKAtr0-?cq=1Have a good night!Sincerely, All new - Get a sneak peak at messages with a handy reading pane. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2007 Report Share Posted January 17, 2007 I had intense pain and made the circuit of doctors trying to get relief. Then a Podiatrist started me on 25mg Amitriptyline taken at bed time. The pain was greater at night and really interfered with my sleep. We slowly increased it to 100mg all at bed time. That is the only noncarcitic that helps. I take it all at bedtime so making me sleepy would be a bonus, but I don't think it does make me sleepy or any other side effects. My positive results were not all just the Amitriptylin as he did some other things too. Betty Re: Hello! Hi : Sorry to have to meet like this but I am glad that you have joined the group. Just a small note. I have been on Amitriptyline 75 mg and neurontin for nearly a year now and yes, it causes confusion, forgetfulness and added depression as far as i am concerned. The doctors told me it is probably stress that is causing this but I know better. So, I hear you. Your blog encouraged me to do my own. and I thank you for that. I feel alot better. I hope you will read my blog and give your opinion. Click on the link below, hopefully it works. Let me know. Good Luck and take care to you and your m Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2007 Report Share Posted January 17, 2007 I had intense pain and made the circuit of doctors trying to get relief. Then a Podiatrist started me on 25mg Amitriptyline taken at bed time. The pain was greater at night and really interfered with my sleep. We slowly increased it to 100mg all at bed time. That is the only noncarcitic that helps. I take it all at bedtime so making me sleepy would be a bonus, but I don't think it does make me sleepy or any other side effects. My positive results were not all just the Amitriptylin as he did some other things too. Betty Re: Hello! Hi : Sorry to have to meet like this but I am glad that you have joined the group. Just a small note. I have been on Amitriptyline 75 mg and neurontin for nearly a year now and yes, it causes confusion, forgetfulness and added depression as far as i am concerned. The doctors told me it is probably stress that is causing this but I know better. So, I hear you. Your blog encouraged me to do my own. and I thank you for that. I feel alot better. I hope you will read my blog and give your opinion. Click on the link below, hopefully it works. Let me know. Good Luck and take care to you and your m Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2007 Report Share Posted January 17, 2007 Do you have any problems with your blood pressure through all of this? If so, do you have to take any other meds for this as well? MargBetty <bvanOmega@...> wrote: I had intense pain and made the circuit of doctors trying to get relief. Then a Podiatrist started me on 25mg Amitriptyline taken at bed time. The pain was greater at night and really interfered with my sleep. We slowly increased it to 100mg all at bed time. That is the only noncarcitic that helps. I take it all at bedtime so making me sleepy would be a bonus, but I don't think it does make me sleepy or any other side effects. My positive results were not all just the Amitriptylin as he did some other things too. Betty Re: Hello! Hi : Sorry to have to meet like this but I am glad that you have joined the group. Just a small note. I have been on Amitriptyline 75 mg and neurontin for nearly a year now and yes, it causes confusion, forgetfulness and added depression as far as i am concerned. The doctors told me it is probably stress that is causing this but I know better. So, I hear you. Your blog encouraged me to do my own. and I thank you for that. I feel alot better. I hope you will read my blog and give your opinion. Click on the link below, hopefully it works. Let me know. Good Luck and take care to you and your m Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2007 Report Share Posted January 17, 2007 Do you have any problems with your blood pressure through all of this? If so, do you have to take any other meds for this as well? MargBetty <bvanOmega@...> wrote: I had intense pain and made the circuit of doctors trying to get relief. Then a Podiatrist started me on 25mg Amitriptyline taken at bed time. The pain was greater at night and really interfered with my sleep. We slowly increased it to 100mg all at bed time. That is the only noncarcitic that helps. I take it all at bedtime so making me sleepy would be a bonus, but I don't think it does make me sleepy or any other side effects. My positive results were not all just the Amitriptylin as he did some other things too. Betty Re: Hello! Hi : Sorry to have to meet like this but I am glad that you have joined the group. Just a small note. I have been on Amitriptyline 75 mg and neurontin for nearly a year now and yes, it causes confusion, forgetfulness and added depression as far as i am concerned. The doctors told me it is probably stress that is causing this but I know better. So, I hear you. Your blog encouraged me to do my own. and I thank you for that. I feel alot better. I hope you will read my blog and give your opinion. Click on the link below, hopefully it works. Let me know. Good Luck and take care to you and your m Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2007 Report Share Posted April 27, 2007 Hi I am I Live in PIttsburgh PA. I am just gettting started with all this.. I have three Dogs Mo Larry and chester... Glad to see ya Hello! Just thought I'd stop by and say " Hey, ya'all " . I have been making soap for about 5 years and bath and body stuff for about 3. I really like making herbal salves and grow alot of my own herbs. I live in Tallahassee, Fl with my 3 cats and one grouchy old man.lol Great to be included. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2007 Report Share Posted April 27, 2007 Hi , What part of Tally do you live in. I live in Tally as well. Mae Hello! Just thought I'd stop by and say " Hey, ya'all " . I have been making soap for about 5 years and bath and body stuff for about 3. I really like making herbal salves and grow alot of my own herbs. I live in Tallahassee, Fl with my 3 cats and one grouchy old man.lol Great to be included. Thanks, __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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