Guest guest Posted April 28, 2003 Report Share Posted April 28, 2003 Congratulations on pin pointing the gluten and casein. I remember those early days. What to do next depends largely on what particular gut/immune system/ neurological/behavioral issues your son has. If you feel that food is what you would like to address only, then I would say that if I had it to do over again, rather than go gfcf then gfcfsf then gfcfsfpf etc. I would have introduced the enzymes for each food I felt was an issue. For us the peptides with casein were more of an issue than gluten. So I would have started with the AFP Peptzyde. The research I have done suggests remaining on whatever particular diet you are currently implementing while you introduce each necessary enzyme. Waiting a couple of months after all needed enzymes are in play and then challenging with foods you know used to offend. So for us that would have meant next introducing the Pryme Zyme ( for gluten) and finally the No-Fenol(Phenolic foods like oranges and bananas). We knew the No-Fenol was needed because the Zp and Pep covered the gluten and casein and yet orange juice/tomatoes set him off with similar reactions, hence the No-Fenol was introduced. But here is a thought. Say we would have started with enzymes in the beginning (2 years ago). Would ph's tolerance to different foods have degenerated to the degree it did? Or would he have never developed a problem with Phenols? Or was the Phenol problem there at the same time and just hidden by the casein and gluten problem? I apologize, didn't mean to ramble, but I didn't delete it because it's something for others to contemplate. Did the diet help us? Yes. But I wish I would have known then what I know now. If there are other issues like I mentioned above, please post, I'm sure there is a parent out there who could name your tune, and if not guide you then perhaps at least share what they have done. Hi Hi, I'm new to the group and have an 8 year old boy with mild Asperger's. He had obvious addictions to wheat and milk products, and so when I began to read about the diet, I had to do it. He has been off of casein for 8 days, with one minor infraction and one major infraction. He has been off of gluten for 4 of the last 5 days. We seem to see an improvement in conversational skills and handwriting at school. Have had a couple of intense withdrawals (I think), when he was on the verge of crying. Tell me what my next steps should be, what I should be looking for, etc. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2003 Report Share Posted May 6, 2003 Terri, I am glad to hear that you are safe.... I saw the news and it was a horrific sight. Hey Ms. !!! ;o Good to hear from you Girl..... You sound so refreshed from your little getaway.... I was so glad to have all of you respond to me... Miss ya all... My husbands eye isn't doing so good..... It looks like a bubble on it and scratched looking. I will let you all know what is going on. I also want to Welcome all the newcomers to the group........ Welcome aboard!!!! Waving atcha from N.J.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Angel Hugs, Diane May Rainbow Dreams Color Your World With Love, Hope, Peace & Unity Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2003 Report Share Posted May 6, 2003 Always great to hear from you too. >From: diane214@... >Reply- > >Subject: Re: [ ] Hi >Date: Tue, 6 May 2003 06:58:25 -0400 (EDT) > MSN 8 helps ELIMINATE E-MAIL VIRUSES. Get 2 months FREE*. Terri, I am glad to hear that you are safe.... I saw the news and it was a horrific sight. Hey Ms. !!! ;o Good to hear from you Girl..... You sound so refreshed from your little getaway.... I was so glad to have all of you respond to me... Miss ya all... My husbands eye isn't doing so good..... It looks like a bubble on it and scratched looking. I will let you all know what is going on. I also want to Welcome all the newcomers to the group........ Welcome aboard!!!! Waving atcha from N.J.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Angel Hugs, Diane May Rainbow Dreams Color Your World With Love, Hope, Peace & Unity Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2003 Report Share Posted June 15, 2003 <kindanice_99@y...> wrote: << Hi my name is Kerri, im 36 in a couple of weeks. I have PA, fibromyalgia,lumbago and depression. I've been putting up with it for years and it took the doctors ages for them to tell me what i have. I finally was told earlier this year that i have PA. Everyone just thought i had rotton skin on my feet from wearing the wrong shoes...But I don't. Anyway it would be really good to chat with some of you. Take care for now...>> Welcome Kerri. Can you tell us more about what you mean about the rotten skin on your feet. Was it P or something else. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2003 Report Share Posted June 15, 2003 -Hi Kerri, Welcome to the group! I have PA and fibromyalgia too. Do you find when your PA flares your fibro does too? Hope you can get on a good treatment program now that you have been diagnosed. Marti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2003 Report Share Posted June 15, 2003 Hello, Kerri. I guess being told you have " rotten skin on your feet. " Is no worse than being told that the toenail problem was either psoriasis or syphylis of the toes....He was joking wasn't he? I've always thought so. Sylvia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2003 Report Share Posted September 7, 2003 Welcome to the group! I have only been a member for a few weeks but have found this group friendly, informative, well informed, suppotive, and inquisitive. I was on methatrexate for a while, and it helped for a short time. Hope you enjoy the group! >From: " kitkat11252 " <kitkat10000@...> >Reply- > >Subject: [ ] Hi >Date: Sun, 07 Sep 2003 03:16:16 -0000 > >I am new to the group. I was recently diagnosed with PA. I started >methotrexate yesterday along with arthrotec twice a day. I hope to >get feeling better soon. I am going to start on primerose oil and >omega oils. If anyone has any input please let me know. I am very >happy to have found this group. > > > _________________________________________________________________ Try MSN Messenger 6.0 with integrated webcam functionality! http://www.msnmessenger-download.com/tracking/reach_webcam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2003 Report Share Posted September 7, 2003 --Hi kitkat, Welcome to the group! I also hope you will be feeling better soon. Methotrexate,arthrotec,and the oils are a good place to start. Good Luck! Marti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2003 Report Share Posted October 1, 2003 HI Dee You might take a trip to s site she has a 'teach me quick' link and lots of other great stuff at <A HREF= " www.enzymestuff.com " >www.enzymestuff.com</A> Can you tell us more about s issues, what food he like to eat etc Mandi in UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2003 Report Share Posted October 2, 2003 Thanks put it in my favorite places to read this weekend. Really appreciate it! Migdalia(DEE) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2003 Report Share Posted November 11, 2003 Good to see you again Andy! most of us know " Overwhelmed " I know I certainly do I hope everything comes together for you real soon you are truly missed A [ ] Hi I am still around. I am just overwhelmed with assorted things to do. I will try to bop over to the list and do some hit and miss answering every few days, but I may put in less time than usual at it for the next few weeks. right how, though, I am going to exterminate a few more tasks rather than post more. Andy . . .. . . . . . . . . . . . . .. . . . . ======================================================= Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 Andy- I received the flyers from you thanks. Do you have the others ready yet? If not when do you think I can expect them? Karyn [ ] Hi I am still around. I am just overwhelmed with assorted things to do. I will try to bop over to the list and do some hit and miss answering every few days, but I may put in less time than usual at it for the next few weeks. right how, though, I am going to exterminate a few more tasks rather than post more. Andy . . .. . . . . . . . . . . . . .. . . . . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 Morning, Well this would be the right place. I joined a short time ago and everyone has been so helpful and understanding. I just started treatments, how long were you on treatments for? Lynne [ ] hi well i joined here hopefully to talk to people. i have had treatment and things turn out ok.but it is just when u have noone to talk to about the virus. hope i can make new friends. i live in louisiana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 - well first would like to say. stay positive w/the treatments.i stayed on them for a year..it was long time but it was worth it in the end... i did treatments like 4years ago....but so far i am still good.....ythank god -- In , " Lynne Dunham " <lynne@l...> wrote: > Morning, > Well this would be the right place. I joined a short time ago and everyone > has been so helpful and understanding. I just started treatments, how long > were you on treatments for? Lynne > > > > > [ ] hi > > > well i joined here hopefully to talk to people. i have had treatment > and things turn out ok.but it is just when u have noone to talk to > about the virus. hope i can make new friends. i live in louisiana > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 Oh I try to stay positive and luckily I have this group. [ ] hi > > > well i joined here hopefully to talk to people. i have had treatment > and things turn out ok.but it is just when u have noone to talk to > about the virus. hope i can make new friends. i live in louisiana > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 I love making new friends, so I hope we can become friends. I have just stopped treatment myself in Dec. so maybe you could help me out with some questions as they arise? I haven't been in this group long but this is a really good group of people!!! Most have quite a few drawbacks in the way of membership, but I've seen none of that here. Not once.....hmmm kind of strange come to think of it. Maybe it's a " Stepford " support group? j/k You'll love it here. Kay > well i joined here hopefully to talk to people. i have had treatment > and things turn out ok.but it is just when u have noone to talk to > about the virus. hope i can make new friends. i live in louisiana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2004 Report Share Posted January 20, 2004 Welcome. We have a couple of southerners in the group. I am from Green Bay, WI. rcajun85 <rcajun85@...> wrote: well i joined here hopefully to talk to people. i have had treatment and things turn out ok.but it is just when u have noone to talk to about the virus. hope i can make new friends. i live in louisiana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2004 Report Share Posted January 24, 2004 You came through loud and clear Dr. Chiu Good to 'see' you again Chris. On 24/01/2004, at 12:06 PM, gchiu@... wrote: > Test =) > lilaydrjxcyjn > -- > Test, yep. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2004 Report Share Posted January 24, 2004 everyone, This is not from Dr. Chiu - this is the Bagle virus - it sends emails to people in the address book found on an infected system. Normally there is an attachment - do NOT click on the attachment as it will infect your system. Regards, Adlard wrote: > You came through loud and clear Dr. Chiu Good to 'see' you again > Chris. > > On 24/01/2004, at 12:06 PM, gchiu@... wrote: > > > Test =) > > lilaydrjxcyjn > > -- > > Test, yep. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2004 Report Share Posted January 25, 2004 Whoops - didn't recognise that one. I was so happy to see Dr. Chiu's name (he used to be a member of this group) that I didn't recognise the virus. Must have been really asleep last night. Thanks , Chris. > > everyone, > > This is not from Dr. Chiu - this is the Bagle virus - it sends emails > to > people in the address book found on an infected system. Normally there > is an attachment - do NOT click on the attachment as it will infect > your > system. > > Regards, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2004 Report Share Posted March 29, 2004 So sorry to hear of your pain, Eileen. We’re here for you HCV is not necessarily a death sentence. Most people do survive it, though, I see from your post that it is affecting the quality of your husbands life already. It is generally a very slow progressing disease and there is a good chance your husband may outlive this virus. I don’t know what the extent of liver damage your husband has suffered, but take heart, there is still a good chance he’ll be around to see your daughters grow up. Meanwhile they are working on better treatments all the time. I pray for you and your family that something comes up that will work for your husband. I had hepatitis for about 20 years before I discovered it, and had suffered minimal liver damage. I don’t want to paint a false picture for you, people do die from this disease, but more people run out the course of their lives before the dragon gets them. Tell us a little more about his condition if you care to. Is there a medical or religious reason your husband will not consider a transplant? Anyway welcome aboard and I hope we can be of some comfort to you and your family -dz- [ ] Hi · Hi my name is eileen and my husband was diagnosed in 1988 with HCV. I have done ok with things till recently, his pain levels have gone through the roof and he has no energy.He's been on the interferon treatment and didn't work and he's decided not to go for a transplant. Whn someone talks about what their teenagers are doing all I can think about is that our 2 little girls will not be able to curl up with daddy and tell him how thier first date went or walk them down the isle when they get married or hold their children. The thought of being without him terrifies me and I know that someday that is going to happen. A lady I work with suggested I find someone to talk to who could relate with me, so if anyone can I'd love to hear how you got through. Eileen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2004 Report Share Posted March 29, 2004 Hi Eileen, I'm . My husband, Shane, was diagnosed with Hep C in December of last year. He is on interferon/ribaviron combo and will take his 3rd shot tomorrow. I'm sorry the treatment didn't work for him. What stage is his liver in? I understand your fear. When we first found out with Shane I was terrified, angry, and bitter. We've overcome a lot of obstacles and all I could think was why us and haven't we been through enough. It took me reading postings here and everyone's awesome support to realize that I had over researched...scared myself silly...and that the majority die WITH Hep C not from it. There are new medicines developed all the time...don't give up...you or your husband. Since he didn't respond to the interferon have ya'll considered going the herbal route? Shane is taking milk thistle along with doing the normal tx. There is also another herbal remedy we've just become aware of that I am researching. I'm working six days this week, but I am going to try to drive to this biochemist's lab next week and talk to him. A friend's mother swears by everything she's ever taken that he's developed. I know, I sound a little hokey, but I believe that if one thing doesn't work for you then try another. I don't think there is ever enough you can do for your health. Since Shane has lost his job due to the Hep C I've gone back to work with the homebuilder I used to work for. I work in Sales and I come across all kinds of people on a daily basis. Twice this week during conversations with a couple of our homeowners I've had Psalms 91 quoted to me. It's worth reading and has only reinforced my faith and my determination. You've come to the right place for support. I was worried with my first post if anyone would respond since I wasn't the one with Hep C, but my worries faded fast. Everyone here is WONDERFUL and such great support. Make yourself at home, and if you need anything don't hesitate to ask. My thoughts and prayers for you and your family. > Hi my name is eileen and my husband was diagnosed in 1988 with HCV. > I have done ok with things till recently, his pain levels have gone > through the roof and he has no energy.He's been on the interferon > treatment and didn't work and he's decided not to go for a > transplant. Whn someone talks about what their teenagers are doing > all I can think about is that our 2 little girls will not be able to > curl up with daddy and tell him how thier first date went or walk > them down the isle when they get married or hold their children. The > thought of being without him terrifies me and I know that someday > that is going to happen. A lady I work with suggested I find someone > to talk to who could relate with me, so if anyone can I'd love to > hear how you got through. > Eileen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2004 Report Share Posted March 29, 2004 thank you for responding to my email. Since Randy took the treatment he's just steadly gotten worse he can't work anymore due to the pain and hepatic encephalophy which means that the toxins form his liver are poisioning his brain it causes memory loss, falling and personality changes. They can't figure out why hes having so much pain, his doctor keeps checking for cancer but hasn't found anything yet.I work for hospice and have seen people die with hcv and they don't have this much pain.Randy knows he won't see the girls grow up and I believe people know these things. They don't know exactly when but they have a sense.We've talked to his hepatoligist about the herbal remadies and he said that there is no medical proof that they work, and with the encephalophy I'd be afraid that it his liver wouldn't flush it right and make things worse. I hope it works for your husband. When Randy was on the treatment he reacted as no other person ever had his alt shot over 200 and be became jaundice. The liver specialist at the VA called all over trying to figure out why and nobody could figure it out, he hasen't been a text book case this far, so he will probaly never be.Thank you for listening hope to hear from you soon.Eileen - In , " " <jenjenintexas@y...> wrote: > Hi Eileen, I'm . My husband, Shane, was diagnosed with Hep > C in December of last year. He is on interferon/ribaviron combo and > will take his 3rd shot tomorrow. I'm sorry the treatment didn't > work for him. What stage is his liver in? I understand your fear. > When we first found out with Shane I was terrified, angry, and > bitter. We've overcome a lot of obstacles and all I could think was > why us and haven't we been through enough. It took me reading > postings here and everyone's awesome support to realize that I had > over researched...scared myself silly...and that the majority die > WITH Hep C not from it. There are new medicines developed all the > time...don't give up...you or your husband. Since he didn't respond > to the interferon have ya'll considered going the herbal route? > Shane is taking milk thistle along with doing the normal tx. There > is also another herbal remedy we've just become aware of that I am > researching. I'm working six days this week, but I am going to try > to drive to this biochemist's lab next week and talk to him. A > friend's mother swears by everything she's ever taken that he's > developed. I know, I sound a little hokey, but I believe that if > one thing doesn't work for you then try another. I don't think > there is ever enough you can do for your health. Since Shane has > lost his job due to the Hep C I've gone back to work with the > homebuilder I used to work for. I work in Sales and I come across > all kinds of people on a daily basis. Twice this week during > conversations with a couple of our homeowners I've had Psalms 91 > quoted to me. It's worth reading and has only reinforced my faith > and my determination. You've come to the right place for support. > I was worried with my first post if anyone would respond since I > wasn't the one with Hep C, but my worries faded fast. Everyone here > is WONDERFUL and such great support. Make yourself at home, and if > you need anything don't hesitate to ask. My thoughts and prayers > for you and your family. > > > > > > Hi my name is eileen and my husband was diagnosed in 1988 with > HCV. > > I have done ok with things till recently, his pain levels have > gone > > through the roof and he has no energy.He's been on the interferon > > treatment and didn't work and he's decided not to go for a > > transplant. Whn someone talks about what their teenagers are doing > > all I can think about is that our 2 little girls will not be able > to > > curl up with daddy and tell him how thier first date went or walk > > them down the isle when they get married or hold their children. > The > > thought of being without him terrifies me and I know that someday > > that is going to happen. A lady I work with suggested I find > someone > > to talk to who could relate with me, so if anyone can I'd love to > > hear how you got through. > > Eileen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2004 Report Share Posted March 29, 2004 Eileen, I am so sorry ya'll have to go through this. I wish there was something I could do for ya'll. Don't give up hope...there are new developments in medicine everyday. Please know that if you ever need a friend to talk to that I am here. You, Randy, and the girls are in my prayers. > > > Hi my name is eileen and my husband was diagnosed in 1988 with > > HCV. > > > I have done ok with things till recently, his pain levels have > > gone > > > through the roof and he has no energy.He's been on the > interferon > > > treatment and didn't work and he's decided not to go for a > > > transplant. Whn someone talks about what their teenagers are > doing > > > all I can think about is that our 2 little girls will not be > able > > to > > > curl up with daddy and tell him how thier first date went or > walk > > > them down the isle when they get married or hold their children. > > The > > > thought of being without him terrifies me and I know that > someday > > > that is going to happen. A lady I work with suggested I find > > someone > > > to talk to who could relate with me, so if anyone can I'd love > to > > > hear how you got through. > > > Eileen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2004 Report Share Posted April 11, 2004 See the attached file for details. Quote Link to comment Share on other sites More sharing options...
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