Guest guest Posted November 6, 2010 Report Share Posted November 6, 2010 Lyme is a clinical diagnosis. Testing is only supposed to be used to validate the clinical findings. So even if your brother is correct, which I don't believe he is, it's a moot point if the clinical findings were positive. The CDC itself states this. You can find very good information at lymediseaseassociation.org and click in treatment guidelines. http://www.ilads.org/lyme_disease/treatment_guidelines.html I don't know why your brother is reacting so strongly. My doctor uses IGENX because they are the only lab that reads the tests by hand instead of using a computer. They feel that is the best way due to the nuances involved in the testing. Good luck to you. I hope you find some answers. Annie ________________________________ From: Ellen Kleinknecht <ellen@...> Sent: Sat, November 6, 2010 10:52:27 AM Subject: [ ] Is Igenix reputable? Hello everyone, My son Tim finally got back his results from IGenix. The PCR was positive for Lyme, and was confirmed by a Southern Blot. The Barts test showed evidence of either an active infection or one that has resolved. My brother at the CDC dismissed it all as garbage, says that IGenix isn’t reputable, and that we’re being led on a wild goose chase. He says the only way Tim has Lyme is if an ELISA or Western Blot shows it. I am desperate. I want to believe the doctor, but my brother’s outrage is very unsettling. Does anyone have a suggestion? Something I can read?? I know this is a hugely controversial area, but my brother says Lyme is a scapegoat disease and that the CDC testing is the gold standard. Thanks everyone! Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2010 Report Share Posted November 6, 2010 Igenex is the best test if you want accurate results. The way I looked at it was that my child was sick and the path we were on was not working so I got her tested and we had two confirmed test. We had to to go into it like nothings permanent but if the lyme treatment works and my daughter doesn't have seizures any more and she can start grasping again then this is the right path. Its been a year, and we have not had any seizures and she can grasp. Go to fight for laura on facebook and read her story! Libby Sent via BlackBerry by AT & T [ ] Is Igenix reputable? Hello everyone, My son Tim finally got back his results from IGenix. The PCR was positive for Lyme, and was confirmed by a Southern Blot. The Barts test showed evidence of either an active infection or one that has resolved. My brother at the CDC dismissed it all as garbage, says that IGenix isn’t reputable, and that we’re being led on a wild goose chase. He says the only way Tim has Lyme is if an ELISA or Western Blot shows it. I am desperate. I want to believe the doctor, but my brother’s outrage is very unsettling. Does anyone have a suggestion? Something I can read?? I know this is a hugely controversial area, but my brother says Lyme is a scapegoat disease and that the CDC testing is the gold standard. Thanks everyone! Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2010 Report Share Posted November 6, 2010 I am on my way out of town, but I agree that Igenex is the BEST. The accreditation process is very tedious I understand and many labs do not meet the high standards that states such as NYS has. Igenex does meet them. (I live in NY so I know ours.) I knew I have copies somewhere of the accreditation. If you call Igenex they will send it to you, of the standards that they have surpassed to be the best. Several years ago a friend sent them to me. She had talked to the head of the lab, Dr. I believe, and he sent her the information. She works in a lab so I am not sure if that is why they sent it. I would guess that if you explained your brother's position they may be more willing to share the information. In any event, I know they test for more bands on the WB and more strains of lyme than most. And I have always heard that PCR tests are definitive! if a PCR is positive it is because they found it in the sample of blood taken. If it is negative it does not mean anything except the particle or whatever was not in that blood sample, but if you find it then it was. That is how we confirmed bartonella was through a PCR test. It is hard to get a positive because it must be in that sample, so I thought PCRs were better than WB. As far as the , I have heard it is not accurate up to 65-70% if the time. The CDC has criteria for survellience not for treatment, and they are very limited. Like others have said lab work only bolsters up a clinical dx, and even the CDC says that. Good luck, On 11/6/2010 11:51 AM, cmcsvc@... wrote: > Igenex is the best test if you want accurate results. The way I looked at it was that my child was sick and the path we were on was not working so I got her tested and we had two confirmed test. We had to to go into it like nothings permanent but if the lyme treatment works and my daughter doesn't have seizures any more and she can start grasping again then this is the right path. Its been a year, and we have not had any seizures and she can grasp. Go to fight for laura on facebook and read her story! Libby > Sent via BlackBerry by AT & T > > [ ] Is Igenix reputable? > > Hello everyone, > > > > My son Tim finally got back his results from IGenix. The PCR was positive > for Lyme, and was confirmed by a Southern Blot. The Barts test showed > evidence of either an active infection or one that has resolved. > > > > My brother at the CDC dismissed it all as garbage, says that IGenix isn’t > reputable, and that we’re being led on a wild goose chase. He says the only > way Tim has Lyme is if an ELISA or Western Blot shows it. > > > > I am desperate. I want to believe the doctor, but my brother’s outrage is > very unsettling. > > > > Does anyone have a suggestion? Something I can read?? I know this is a > hugely controversial area, but my brother says Lyme is a scapegoat disease > and that the CDC testing is the gold standard. > > > > Thanks everyone! > > Ellen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2010 Report Share Posted November 6, 2010 I believe Igenex is reputable and that Lyme disease is a clinical diagnosis. My son tested neg thru Igenex but positive for an unidentifiable parasite (thru another lab). When our dr started treating him for the parasite (probably Babesia but that lab doesn't identify Babesia + I tested pos for Babesia) , and he began to improve, they gradually began treating him for Lyme. Due to his continued improvement, the fact that I have Lyme and coinfections, etc, etc, they diagnosed him w/ Lyme. I can only speak of our experience but our dr did not just " jump " onto a Lyme diagnosis. It was a process over about 6 mths. If you have not yet seen the documentary, Under Our Skin, it would be good for you to watch. You might just have to tell your brother that you will have to pursue a certain course and, for right now, this is what you are trying. I've had people, who really aren't aware of any of this, make comments to me about Lyme. They just don't know enough to make any judgements but, yes, it can make you question your own judgement. We are all still learning! Best wishes, Elaine ________________________________ From: Faces <faces@...> Sent: Sat, November 6, 2010 9:00:17 AM Subject: Re: [ ] Is Igenix reputable? I am on my way out of town, but I agree that Igenex is the BEST. The accreditation process is very tedious I understand and many labs do not meet the high standards that states such as NYS has. Igenex does meet them. (I live in NY so I know ours.) I knew I have copies somewhere of the accreditation. If you call Igenex they will send it to you, of the standards that they have surpassed to be the best. Several years ago a friend sent them to me. She had talked to the head of the lab, Dr. I believe, and he sent her the information. She works in a lab so I am not sure if that is why they sent it. I would guess that if you explained your brother's position they may be more willing to share the information. In any event, I know they test for more bands on the WB and more strains of lyme than most. And I have always heard that PCR tests are definitive! if a PCR is positive it is because they found it in the sample of blood taken. If it is negative it does not mean anything except the particle or whatever was not in that blood sample, but if you find it then it was. That is how we confirmed bartonella was through a PCR test. It is hard to get a positive because it must be in that sample, so I thought PCRs were better than WB. As far as the , I have heard it is not accurate up to 65-70% if the time. The CDC has criteria for survellience not for treatment, and they are very limited. Like others have said lab work only bolsters up a clinical dx, and even the CDC says that. Good luck, On 11/6/2010 11:51 AM, cmcsvc@... wrote: > Igenex is the best test if you want accurate results. The way I looked at it >was that my child was sick and the path we were on was not working so I got her >tested and we had two confirmed test. We had to to go into it like nothings >permanent but if the lyme treatment works and my daughter doesn't have seizures >any more and she can start grasping again then this is the right path. Its been >a year, and we have not had any seizures and she can grasp. Go to fight for >laura on facebook and read her story! Libby > Sent via BlackBerry by AT & T > > [ ] Is Igenix reputable? > > Hello everyone, > > > > My son Tim finally got back his results from IGenix. The PCR was positive > for Lyme, and was confirmed by a Southern Blot. The Barts test showed > evidence of either an active infection or one that has resolved. > > > > My brother at the CDC dismissed it all as garbage, says that IGenix isn’t > reputable, and that we’re being led on a wild goose chase. He says the only > way Tim has Lyme is if an ELISA or Western Blot shows it. > > > > I am desperate. I want to believe the doctor, but my brother’s outrage is > very unsettling. > > > > Does anyone have a suggestion? Something I can read?? I know this is a > hugely controversial area, but my brother says Lyme is a scapegoat disease > and that the CDC testing is the gold standard. > > > > Thanks everyone! > > Ellen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2010 Report Share Posted November 7, 2010 Hi Ellen, this is one of the most difficult aspects of Lyme. Not only do we have to fight to get well, we have to fight to get an accurate diagnosis, find a doctor who will help us and that we can afford, and often times deal with the skeptism and ridicule of our friends and family. From what I understand, there are 13 strains of Lyme that have been mapped out (search on ScienceDaily.com for " Lyme Genome " ) and the blot only looks for two of them. Igenix looks for more but still not enough to be conclusive--clinical is the way to diagnose. You are going to be better off not consulting your brother about this, it will just lead to frustration and a huge rift. Do the best you can to figure out which treatments to try, try them, and then be your own judge as to what is true and what is working for you and your family. Sincerely, Margaret > > Igenex is the best test if you want accurate results. The way I looked at it was that my child was sick and the path we were on was not working so I got her tested and we had two confirmed test. We had to to go into it like nothings permanent but if the lyme treatment works and my daughter doesn't have seizures any more and she can start grasping again then this is the right path. Its been a year, and we have not had any seizures and she can grasp. Go to fight for laura on facebook and read her story! Libby > > Sent via BlackBerry by AT & T > > > > [ ] Is Igenix reputable? > > > > Hello everyone, > > > > > > > > My son Tim finally got back his results from IGenix. The PCR was positive > > for Lyme, and was confirmed by a Southern Blot. The Barts test showed > > evidence of either an active infection or one that has resolved. > > > > > > > > My brother at the CDC dismissed it all as garbage, says that IGenix isn't > > reputable, and that we're being led on a wild goose chase. He says the only > > way Tim has Lyme is if an ELISA or Western Blot shows it. > > > > > > > > I am desperate. I want to believe the doctor, but my brother's outrage is > > very unsettling. > > > > > > > > Does anyone have a suggestion? Something I can read?? I know this is a > > hugely controversial area, but my brother says Lyme is a scapegoat disease > > and that the CDC testing is the gold standard. > > > > > > > > Thanks everyone! > > > > Ellen > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2010 Report Share Posted November 7, 2010 Ellen here is the link to the article I suggested earlier: http://www.sciencedaily.com/releases/2010/10/101018131423.htm It is a non-controversial way of dealing with the question: the CDC testing is not looking for enough of the strains to be used to rule out Lyme. > > Igenex is the best test if you want accurate results. The way I looked at it was that my child was sick and the path we were on was not working so I got her tested and we had two confirmed test. We had to to go into it like nothings permanent but if the lyme treatment works and my daughter doesn't have seizures any more and she can start grasping again then this is the right path. Its been a year, and we have not had any seizures and she can grasp. Go to fight for laura on facebook and read her story! Libby > > Sent via BlackBerry by AT & T > > > > [ ] Is Igenix reputable? > > > > Hello everyone, > > > > > > > > My son Tim finally got back his results from IGenix. The PCR was positive > > for Lyme, and was confirmed by a Southern Blot. The Barts test showed > > evidence of either an active infection or one that has resolved. > > > > > > > > My brother at the CDC dismissed it all as garbage, says that IGenix isn't > > reputable, and that we're being led on a wild goose chase. He says the only > > way Tim has Lyme is if an ELISA or Western Blot shows it. > > > > > > > > I am desperate. I want to believe the doctor, but my brother's outrage is > > very unsettling. > > > > > > > > Does anyone have a suggestion? Something I can read?? I know this is a > > hugely controversial area, but my brother says Lyme is a scapegoat disease > > and that the CDC testing is the gold standard. > > > > > > > > Thanks everyone! > > > > Ellen > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2010 Report Share Posted November 7, 2010 Hi Ellen, I strong recommend the book - Cure Unknown by Pamela Weintraub. It is very helpful to understanding how the CDC criteria, WB testing and IDSA 'standards' came about - and will help you talk to your brother about it. It is not a short book - but the chapters alternate between following personal stories (author's family and others) and technical/scientific information. It really helped me decipher this complex disease, and understand how much is not known yet about it (as best as I can right now given my own brain fog ). The book is only $10 on amazon (plus shipping). Basically CDC testing might be the gold standard for one strain of Lyme, in one person's type of immune system. But it seems that there are hundreds of strains of Lyme and the test was based on *one* strain. I could go one the but the book does a much better job at explaining all this. good luck, misty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2010 Report Share Posted November 7, 2010 The CDC is no longer really interested in helping with disease. It is a political machine and in bed with the insurance companies. Your brother may not realize this of course and no one there would admit it anyway... But, I'm sure he is told a LOT of inaccurate things at work. I can only imagine. He is probably outraged because he probably thinks you're being scammed which if it were true (and it is SO not true) would be very admirable. Jen Lymie parents, 5yo Lymie/Aspie On 11/6/2010 10:52 AM, Ellen Kleinknecht wrote: > Hello everyone, > > > > My son Tim finally got back his results from IGenix. The PCR was positive > for Lyme, and was confirmed by a Southern Blot. The Barts test showed > evidence of either an active infection or one that has resolved. > > > > My brother at the CDC dismissed it all as garbage, says that IGenix isn’t > reputable, and that we’re being led on a wild goose chase. He says the only > way Tim has Lyme is if an ELISA or Western Blot shows it. > > > > I am desperate. I want to believe the doctor, but my brother’s outrage is > very unsettling. > > > > Does anyone have a suggestion? Something I can read?? I know this is a > hugely controversial area, but my brother says Lyme is a scapegoat disease > and that the CDC testing is the gold standard. > > > > Thanks everyone! > > Ellen > Quote Link to comment Share on other sites More sharing options...
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