Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 No, the only group I am in is the CFparent group so the any information would be GREAT. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 No, the only group I am in is the CFparent group so the any information would be GREAT. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 Hmmmmm, I guess I am so used to my own typos that I just assumed that " chicken eggs " was what was intended! n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 Chicken eyes? New Sweden reseach I took the girls in for there routine check up and our doctor went to the New Orleans convention and he said he talked to a doctor that has been doing a study on a medication they make from chicken eyes. Has anyone heard of this? He wants to try it on my oldest if he can get it in the USA. The doctor who invented it is trying to get it started here. It's the IgY of the placenta from the egg. (The antibodies) I guess you gargle this everyday and it keep psuedomonas away. They have doen studies over in Sweden with very good results. Just wondering if anyone has heard of this? Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Hi, this isn't really new. Maybe some of you, who are on the conncoll list, remember Anki from Sweden. Her son Johan was in that egg gargle study. But when I wanted to look the subject up on PubMed I was surprised to see that the abstracts are gone. I have no explanation for that. Below is the comment from the 1999 European CF conference. It's one of those things that look so promising but seem to never make it to the public. Peace Torsten 366. More than 5 Years Without Any New Chronic P. Aeruginosa Infections at Uppsala CF Center HO Kollberg et al., CF Centre, Uppsala, Sweden Inroduction: Last year we reported that we had no new chronic PA infections for 4 years at our centre. We now have continued another year and we still do not have any new chronic PA infections. Aim of the Study: To determine if chronic PA infections can be prevented in CF by gargling with PA-specific antibodies from egg yolk (anti-PA IgY). Lab method: Specific antibodies against PA were produced by immunizing hens with killed PA. A solution with high specific antibody concentration was made from their eggs. Clinical methods: CF pts with a sputum culture positive for PA, but not chronically colonized, may join the study. The pts receive an intense anti-PA antibiotic course to eradicate PA. At the same time, they start to gargle every night after tooth brushing with the specific antibody solution. Sputum cultures have been controlled monthly and PA antibodies yearly. 14 pts have started the study, but 5 have discontinued (3 were too young and unable to gargle, 2 were non-compliant). Results: The 9 pts have been treated for 2-50 months (all together, >150 pt months), and none of them have got chronic PA colonisation. Only 3 cultures have been positive -- 2 of them after interruption of daily gargling and 1 after visiting a CF camp. These pts have immediiately obatined a new antibiotic course, restarted the daily gargling and continue to be negative. This can be compared to Copenhagen where 14 CF pts were treated with antibiotics at their first PA-positive culture in the same way as ours. The Copenhagen pts were observed for 27 months: 49/214 (23%) sputum cultures were positive for PA. Ours 3/130 = 2.3%, P<.005). Discussion: The use of IgY has several important advantages. It is easy to induce very high concentrations of antibodies in eggs. The antibodies from eggs fo not activate the human complement system. Conclusion: The results continue to strongly indicate that treatment with PA antibodies from eggs has a prophylactic effect against chronic PA infection in CF pts. > I took the girls in for there routine check up and our doctor went to the New > Orleans convention and he said he talked to a doctor that has been doing a > study on a medication they make from chicken eyes. Has anyone heard of this? > He wants to try it on my oldest if he can get it in the USA. The doctor who > invented it is trying to get it started here. It's the IgY of the placenta > from the egg. (The antibodies) I guess you gargle this everyday and it keep > psuedomonas away. They have doen studies over in Sweden with very good > results. Just wondering if anyone has heard of this? Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Hi, this isn't really new. Maybe some of you, who are on the conncoll list, remember Anki from Sweden. Her son Johan was in that egg gargle study. But when I wanted to look the subject up on PubMed I was surprised to see that the abstracts are gone. I have no explanation for that. Below is the comment from the 1999 European CF conference. It's one of those things that look so promising but seem to never make it to the public. Peace Torsten 366. More than 5 Years Without Any New Chronic P. Aeruginosa Infections at Uppsala CF Center HO Kollberg et al., CF Centre, Uppsala, Sweden Inroduction: Last year we reported that we had no new chronic PA infections for 4 years at our centre. We now have continued another year and we still do not have any new chronic PA infections. Aim of the Study: To determine if chronic PA infections can be prevented in CF by gargling with PA-specific antibodies from egg yolk (anti-PA IgY). Lab method: Specific antibodies against PA were produced by immunizing hens with killed PA. A solution with high specific antibody concentration was made from their eggs. Clinical methods: CF pts with a sputum culture positive for PA, but not chronically colonized, may join the study. The pts receive an intense anti-PA antibiotic course to eradicate PA. At the same time, they start to gargle every night after tooth brushing with the specific antibody solution. Sputum cultures have been controlled monthly and PA antibodies yearly. 14 pts have started the study, but 5 have discontinued (3 were too young and unable to gargle, 2 were non-compliant). Results: The 9 pts have been treated for 2-50 months (all together, >150 pt months), and none of them have got chronic PA colonisation. Only 3 cultures have been positive -- 2 of them after interruption of daily gargling and 1 after visiting a CF camp. These pts have immediiately obatined a new antibiotic course, restarted the daily gargling and continue to be negative. This can be compared to Copenhagen where 14 CF pts were treated with antibiotics at their first PA-positive culture in the same way as ours. The Copenhagen pts were observed for 27 months: 49/214 (23%) sputum cultures were positive for PA. Ours 3/130 = 2.3%, P<.005). Discussion: The use of IgY has several important advantages. It is easy to induce very high concentrations of antibodies in eggs. The antibodies from eggs fo not activate the human complement system. Conclusion: The results continue to strongly indicate that treatment with PA antibodies from eggs has a prophylactic effect against chronic PA infection in CF pts. > I took the girls in for there routine check up and our doctor went to the New > Orleans convention and he said he talked to a doctor that has been doing a > study on a medication they make from chicken eyes. Has anyone heard of this? > He wants to try it on my oldest if he can get it in the USA. The doctor who > invented it is trying to get it started here. It's the IgY of the placenta > from the egg. (The antibodies) I guess you gargle this everyday and it keep > psuedomonas away. They have doen studies over in Sweden with very good > results. Just wondering if anyone has heard of this? Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Torsten, Our doctor here said he is having a hard time getting someone here in the USA to produce it. I quess they had a company then they company was sold and the new owners said they had to many other things go right now to be able to start something new. So right now they have found a new company that will help them to produce this drug but probably won't be available until sometime next year. Thanks for the information! I hadn't heard anything about this and was wondering what there fed back was on this. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Torsten, Our doctor here said he is having a hard time getting someone here in the USA to produce it. I quess they had a company then they company was sold and the new owners said they had to many other things go right now to be able to start something new. So right now they have found a new company that will help them to produce this drug but probably won't be available until sometime next year. Thanks for the information! I hadn't heard anything about this and was wondering what there fed back was on this. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 In a message dated 10/15/2002 11:40:40 AM Central Daylight Time, Torstenkrafft@... writes: > Torsten Thanks for the information! I know I could count on you to have information on it. It makes me feel a little better know others know about it but I hope get it her soon. has been fighting psuedomonas since last year in Oct and doing something like gargling would be a piece of cake compared to everything we have been doing. The only thing her doctor is worried about it the psuedomans in the nose it will still be there on less we can figure away to get it out of her nose too. But like he says know one dies from psuedomanas in the nose only when it stays in the lung but eventually it will get in the lungs if it stays in her nose. All we can do is hope and pray something will help. Thanks again Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 In a message dated 10/15/2002 11:40:40 AM Central Daylight Time, Torstenkrafft@... writes: > Torsten Thanks for the information! I know I could count on you to have information on it. It makes me feel a little better know others know about it but I hope get it her soon. has been fighting psuedomonas since last year in Oct and doing something like gargling would be a piece of cake compared to everything we have been doing. The only thing her doctor is worried about it the psuedomans in the nose it will still be there on less we can figure away to get it out of her nose too. But like he says know one dies from psuedomanas in the nose only when it stays in the lung but eventually it will get in the lungs if it stays in her nose. All we can do is hope and pray something will help. Thanks again Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 In a message dated 10/15/2002 11:40:40 AM Central Daylight Time, Torstenkrafft@... writes: > Torsten Thanks for the information! I know I could count on you to have information on it. It makes me feel a little better know others know about it but I hope get it her soon. has been fighting psuedomonas since last year in Oct and doing something like gargling would be a piece of cake compared to everything we have been doing. The only thing her doctor is worried about it the psuedomans in the nose it will still be there on less we can figure away to get it out of her nose too. But like he says know one dies from psuedomanas in the nose only when it stays in the lung but eventually it will get in the lungs if it stays in her nose. All we can do is hope and pray something will help. Thanks again Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 In a message dated 10/15/2002 12:18:09 PM Central Daylight Time, bevd@... writes: > I too , believe what you said about holding those things back. I also > feel that once their patent rights are thru & they have paid for all the > sadden expenses of clinical trials, etc -they should then lower the > prices. it isn't fair to have patients HAVE TO PAY ALL THEIR LIVES THE > ADDED COST . I get really upset to see patients overcharged. Thanks > for your help here & all the great info. I do hope your dear Fiona & > Silke are doing well. > > LOVE & HUGS, grandmoMBEV > Our doctor told us it would probably cost as much as the Tobi and he didn't know if our insurance would cover it being it was still in the trial stages. But we have on a waiver program that helps pay what our insurance doesn't so we are hoping the state will pay for it. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Hi Deb, that makes sense. Some years ago Pathogenesis, the maker of TOBI acquired a license to produce the gargle. I remember that I was totally confused why a company, that makes money from a drug that works against PA (TOBI) was interested in a product, that would prevent pseudomonas infections. I was very scared that the patent would disappear in their cupboards forever. Then Chiron took over Pathogenesis and we heard nothing about the egg yolk gargle. And even more confusing all info about is has disappeared from the web (at least I couldn't find anything). I don't believe in those horror stories about companies, that withhold cheap but effective drugs to sell their expensive drugs. But the egg yolk story is one where you can become a believer :-(( I hope your doc is right and there will finally be a producer for that stuff. In the past I didn't care, because Fiona was too young to gargle. But now she is five and still without Pseudomonas (touch wood). Thanks for reminding me about this. Peace Torsten > Torsten, > Our doctor here said he is having a hard time getting someone here in the USA > to produce it. I quess they had a company then they company was sold and the > new owners said they had to many other things go right now to be able to > start something new. So right now they have found a new company that will > help them to produce this drug but probably won't be available until sometime > next year. Thanks for the information! I hadn't heard anything about this and > was wondering what there fed back was on this. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Hi Deb, that makes sense. Some years ago Pathogenesis, the maker of TOBI acquired a license to produce the gargle. I remember that I was totally confused why a company, that makes money from a drug that works against PA (TOBI) was interested in a product, that would prevent pseudomonas infections. I was very scared that the patent would disappear in their cupboards forever. Then Chiron took over Pathogenesis and we heard nothing about the egg yolk gargle. And even more confusing all info about is has disappeared from the web (at least I couldn't find anything). I don't believe in those horror stories about companies, that withhold cheap but effective drugs to sell their expensive drugs. But the egg yolk story is one where you can become a believer :-(( I hope your doc is right and there will finally be a producer for that stuff. In the past I didn't care, because Fiona was too young to gargle. But now she is five and still without Pseudomonas (touch wood). Thanks for reminding me about this. Peace Torsten > Torsten, > Our doctor here said he is having a hard time getting someone here in the USA > to produce it. I quess they had a company then they company was sold and the > new owners said they had to many other things go right now to be able to > start something new. So right now they have found a new company that will > help them to produce this drug but probably won't be available until sometime > next year. Thanks for the information! I hadn't heard anything about this and > was wondering what there fed back was on this. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Hi Deb, that makes sense. Some years ago Pathogenesis, the maker of TOBI acquired a license to produce the gargle. I remember that I was totally confused why a company, that makes money from a drug that works against PA (TOBI) was interested in a product, that would prevent pseudomonas infections. I was very scared that the patent would disappear in their cupboards forever. Then Chiron took over Pathogenesis and we heard nothing about the egg yolk gargle. And even more confusing all info about is has disappeared from the web (at least I couldn't find anything). I don't believe in those horror stories about companies, that withhold cheap but effective drugs to sell their expensive drugs. But the egg yolk story is one where you can become a believer :-(( I hope your doc is right and there will finally be a producer for that stuff. In the past I didn't care, because Fiona was too young to gargle. But now she is five and still without Pseudomonas (touch wood). Thanks for reminding me about this. Peace Torsten > Torsten, > Our doctor here said he is having a hard time getting someone here in the USA > to produce it. I quess they had a company then they company was sold and the > new owners said they had to many other things go right now to be able to > start something new. So right now they have found a new company that will > help them to produce this drug but probably won't be available until sometime > next year. Thanks for the information! I hadn't heard anything about this and > was wondering what there fed back was on this. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 I too , believe what you said about holding those things back. I also feel that once their patent rights are thru & they have paid for all the sadden expenses of clinical trials, etc -they should then lower the prices. it isn't fair to have patients HAVE TO PAY ALL THEIR LIVES THE ADDED COST . I get really upset to see patients overcharged. Thanks for your help here & all the great info. I do hope your dear Fiona & Silke are doing well. LOVE & HUGS, grandmoMBEV Re: New Sweden reseach Hi Deb, that makes sense. Some years ago Pathogenesis, the maker of TOBI acquired a license to produce the gargle. I remember that I was totally confused why a company, that makes money from a drug that works against PA (TOBI) was interested in a product, that would prevent pseudomonas infections. I was very scared that the patent would disappear in their cupboards forever. Then Chiron took over Pathogenesis and we heard nothing about the egg yolk gargle. And even more confusing all info about is has disappeared from the web (at least I couldn't find anything). I don't believe in those horror stories about companies, that withhold cheap but effective drugs to sell their expensive drugs. But the egg yolk story is one where you can become a believer :-(( I hope your doc is right and there will finally be a producer for that stuff. In the past I didn't care, because Fiona was too young to gargle. But now she is five and still without Pseudomonas (touch wood). Thanks for reminding me about this. Peace Torsten > Torsten, > Our doctor here said he is having a hard time getting someone here in the USA > to produce it. I quess they had a company then they company was sold and the > new owners said they had to many other things go right now to be able to > start something new. So right now they have found a new company that will > help them to produce this drug but probably won't be available until sometime > next year. Thanks for the information! I hadn't heard anything about this and > was wondering what there fed back was on this. Deb A PLEASE do not post religious emails to the list. ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 I too , believe what you said about holding those things back. I also feel that once their patent rights are thru & they have paid for all the sadden expenses of clinical trials, etc -they should then lower the prices. it isn't fair to have patients HAVE TO PAY ALL THEIR LIVES THE ADDED COST . I get really upset to see patients overcharged. Thanks for your help here & all the great info. I do hope your dear Fiona & Silke are doing well. LOVE & HUGS, grandmoMBEV Re: New Sweden reseach Hi Deb, that makes sense. Some years ago Pathogenesis, the maker of TOBI acquired a license to produce the gargle. I remember that I was totally confused why a company, that makes money from a drug that works against PA (TOBI) was interested in a product, that would prevent pseudomonas infections. I was very scared that the patent would disappear in their cupboards forever. Then Chiron took over Pathogenesis and we heard nothing about the egg yolk gargle. And even more confusing all info about is has disappeared from the web (at least I couldn't find anything). I don't believe in those horror stories about companies, that withhold cheap but effective drugs to sell their expensive drugs. But the egg yolk story is one where you can become a believer :-(( I hope your doc is right and there will finally be a producer for that stuff. In the past I didn't care, because Fiona was too young to gargle. But now she is five and still without Pseudomonas (touch wood). Thanks for reminding me about this. Peace Torsten > Torsten, > Our doctor here said he is having a hard time getting someone here in the USA > to produce it. I quess they had a company then they company was sold and the > new owners said they had to many other things go right now to be able to > start something new. So right now they have found a new company that will > help them to produce this drug but probably won't be available until sometime > next year. Thanks for the information! I hadn't heard anything about this and > was wondering what there fed back was on this. Deb A PLEASE do not post religious emails to the list. ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
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