Guest guest Posted August 8, 2009 Report Share Posted August 8, 2009 Igenex in Palo Alto, California has one of the more sensitive test. http://igenex.com/Website/ This site has info on Lyme testing and treatments. http://www.anapsid.org/lyme/ After I tested negative on the more common Lyme tests, I was borderline positive on parts of the Igenex test. I'm not sure what the sensitivity of this test is. I read there are only tests for 2 of 13 Babesia species, so the other 11 types will never be detected. Maybe you could try Cat's Claw. http://www.samento.com.ec/nutranews/story001.html Before I had a infection diagnosis (Cpn and EBV), I took Cat's Claw for arthritis and had a huge die off reaction. It doesn't matter if the Cat's Claw is 'TOA' free. TOA is another variety of the herbal vine that is also effective. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2009 Report Share Posted August 9, 2009 Igenex testing is not recognized by the medical community as a legitimate lab. I tested positive there and it led me to do 6 months IV rocephin and 6 months oral antibiotics and I never felt even a little bit better. Even my wife, who is not sick, tested positive for lyme there. I rarely come across someone who didnt test positive for lyme at Igenex. It seems as though they will diagnose you with lyme when all other doctors have been unable to find a cause to your illness, but why would you want to be diagnosed with lyme if it really isnt? A LLMD will place you on antibiotics for a couple years and when you start feeling a bit better claim your treatment is done. But some cases of CFS get better within a few years anyway, so how could you even know if it was the couple years of ABX that helped you get better. I know a lady who has been on ABX for 21 years and still claims its lyme making her sick. I know another one who has been on IV antibiotics for 5 years now and still claims its lyme, just because Igenex said she was positive. In my opinion, if you have a dysfunctional immune system, any extra sensitive titer test results can be incorrect. Titer tests are measuring the molecular weight of antibodies you have. A dysfunctional immune system can produce a variety of dysfunctional antibodies, or maybe its just in Igenex's plan to give everyone a positive reading. In my case, my CFS is caused by a Chronic sackie B4 infection. I am positive by both blood and tissue biopsy. The virus is confirmed to be in my blood at 355 copies/mL, meaning I have millions of RNA copies saturating my tissues and muscles. Dont fall into the lyme scheme, its a big waste of money and health..... Rick > > Igenex in Palo Alto, California has one of the more sensitive test. > http://igenex.com/Website/ > > This site has info on Lyme testing and treatments. > http://www.anapsid.org/lyme/ > > After I tested negative on the more common Lyme tests, I was borderline positive on parts of the Igenex test. I'm not sure what the sensitivity of this test is. I read there are only tests for 2 of 13 Babesia species, so the other 11 types will never be detected. > > Maybe you could try Cat's Claw. > http://www.samento.com.ec/nutranews/story001.html > Before I had a infection diagnosis (Cpn and EBV), I took Cat's Claw for arthritis and had a huge die off reaction. It doesn't matter if the Cat's Claw is 'TOA' free. TOA is another variety of the herbal vine that is also effective. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2009 Report Share Posted August 10, 2009 I just wanted to mention that regardless of the controversy regarding igenex and lyme, just because antibiotics don't work doesn't mean you don't have lyme. I was not only positive for lyme via igenex criteria but by the far stricter CDC criteria. The CFS specialists that I " ve seen all diagnosed me with lyme disease. However, I only got sicker on high-dose antibiotics because my body simply cannot tolerate that level of toxicity. I eventually felt better after I treated lyme with photon-directed action. I am not completely well, so I wouldn't say my CFS was caused by lyme, only that it was a secondary factor. Rick-to exercise such a generalization about lyme makes you sound rather misinformed considering that Connecticut just recently passed a bill recognizing and permitting treatment of chronic lyme and even non-LLMDs are recognizing lyme as a serious bug. Especially in light of your statement that you know what virus caused your CFS simply because it showed up in your bloodstream in large quantities. It is, for example, quite possible for latent viruses in your body to gain such critical mass only due to vastly upregulated HPA dysfunction, which can result from an overstimulated limbic system. That is just an example of a string of events that can cause CFS besides a single virus, not necessarily one that applies to your case. > > > > Igenex in Palo Alto, California has one of the more sensitive test. > > http://igenex.com/Website/ > > > > This site has info on Lyme testing and treatments. > > http://www.anapsid.org/lyme/ > > > > After I tested negative on the more common Lyme tests, I was borderline positive on parts of the Igenex test. I'm not sure what the sensitivity of this test is. I read there are only tests for 2 of 13 Babesia species, so the other 11 types will never be detected. > > > > Maybe you could try Cat's Claw. > > http://www.samento.com.ec/nutranews/story001.html > > Before I had a infection diagnosis (Cpn and EBV), I took Cat's Claw for arthritis and had a huge die off reaction. It doesn't matter if the Cat's Claw is 'TOA' free. TOA is another variety of the herbal vine that is also effective. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2009 Report Share Posted August 13, 2009 Hi Rick, Thanks for your post. Interesting subject as I've just had a positive IgG western blot and indeterminate IgM from Igenex. What does everyone else think? Is it really an accurate statement to say Igenex testing is not recognized by the medical community? They are licensed aren't they? Are they recognised by insurance companies? Bob > > Igenex testing is not recognized by the medical community as a legitimate lab. I tested positive there and it led me to do 6 months IV rocephin and 6 months oral antibiotics and I never felt even a little bit better. Even my wife, who is not sick, tested positive for lyme there. I rarely come across someone who didnt test positive for lyme at Igenex. It seems as though they will diagnose you with lyme when all other doctors have been unable to find a cause to your illness... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2009 Report Share Posted August 14, 2009 Bob – as I understand it IgM amounts are higher with a new infections. IgG amounts are higher with a reactivated or chronic infection. sally > > > > Igenex testing is not recognized by the medical community as a legitimate lab. I tested positive there and it led me to do 6 months IV rocephin and 6 months oral antibiotics and I never felt even a little bit better. Even my wife, who is not sick, tested positive for lyme there. I rarely come across someone who didnt test positive for lyme at Igenex. It seems as though they will diagnose you with lyme when all other doctors have been unable to find a cause to your illness... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2009 Report Share Posted August 14, 2009 I'm not entirely sure on the accuracy of Igenex either, but for what it's worth, I tested positive with them twice, and my fiance (who also has severe CFS) was negative. So they do sometimes have negative results. > > > > > Igenex testing is not recognized by the medical community as a legitimate lab. I tested positive there and it led me to do 6 months IV rocephin and 6 months oral antibiotics and I never felt even a little bit better. Even my wife, who is not sick, tested positive for lyme there. I rarely come across someone who didnt test positive for lyme at Igenex. It seems as though they will diagnose you with lyme when all other doctors have been unable to find a cause to your illness... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2009 Report Share Posted August 14, 2009 -I too have had positive results from the western blot and Igenix for lyme. I was treated for 1 mo. 20 years ago with iv rocephin. Since then the Drs. have not treated me. I have a rife machine and use collodial silver to treat myself. I was not positive for the coinfections. I just treat myself for chronic fatigue. joyce -- In , " achoohoo " <achoohoo@...> wrote: > > Hi Rick, > > Thanks for your post. Interesting subject as I've just had a positive IgG western blot and indeterminate IgM from Igenex. What does everyone else think? Is it really an accurate statement to say Igenex testing is not recognized by the medical community? They are licensed aren't they? Are they recognised by insurance companies? > > Bob > > > > > > > Igenex testing is not recognized by the medical community as a legitimate lab. I tested positive there and it led me to do 6 months IV rocephin and 6 months oral antibiotics and I never felt even a little bit better. Even my wife, who is not sick, tested positive for lyme there. I rarely come across someone who didnt test positive for lyme at Igenex. It seems as though they will diagnose you with lyme when all other doctors have been unable to find a cause to your illness... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2009 Report Share Posted August 14, 2009 I don't know where this idea that Igenex is no good comes from. I live in Canada and have just had positive tests come back from Igenex for me and both of my kids. Our specialist here said Igenex is the only one she trusts. Dr Murakami in BC is a retired Lyme specialist who has treated thousands of patients and he agrees, as does the MD who is going to treat us. Igenex is certified, inspected etc - check out their website for all the official certificates. I don't know about insurance - here in Canada the public health system is in the dark ages about Lyme - it is up to the patients to fund all of their treatment. in Calgary > > Hi Rick, > > Thanks for your post. Interesting subject as I've just had a positive IgG western blot and indeterminate IgM from Igenex. What does everyone else think? Is it really an accurate statement to say Igenex testing is not recognized by the medical community? They are licensed aren't they? Are they recognised by insurance companies? > > Bob > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2009 Report Share Posted August 14, 2009 " People " I " think " " might " prefer to be in denial....Igenex and Fry for me were both covered by my insurance and medicare. I have medicare secondary and Empire Blue Cross Blue Shield PPO..but I had to use my out of network coverage..I was over my out of network personal deductible.... My Igenex came back " Intdeterminant " which is not negative. The Igenex test showed  two bands and MDL showed two other bands.....Could it be everyone has it but it depends if one gets bit by a tick versus another vector??? Who knows....  We are the guinea pig generation!!! Many more species than borellia so a negative test might not be negative...something to think about... Mindy CFS/FMS Support Group Co-leader in Florida ......the big debate..is CFS/FMS a symptom of Chronic Lyme Mosquitoes, fleas, gnats, etc are carriers as well. Not just carried by ticks!!! At CDC hearing at the end of July, it was said white footed mice are thought to be carriers of Borellia.... Deers are one of many hosts. Science is not where it needs to be!! ________________________________ From: ssn_jasper <susan@...> Sent: Friday, August 14, 2009 1:13:45 PM Subject: Re: Lyme tests  I don't know where this idea that Igenex is no good comes from. I live in Canada and have just had positive tests come back from Igenex for me and both of my kids. Our specialist here said Igenex is the only one she trusts. Dr Murakami in BC is a retired Lyme specialist who has treated thousands of patients and he agrees, as does the MD who is going to treat us. Igenex is certified, inspected etc - check out their website for all the official certificates. I don't know about insurance - here in Canada the public health system is in the dark ages about Lyme - it is up to the patients to fund all of their treatment. in Calgary > > Hi Rick, > > Thanks for your post. Interesting subject as I've just had a positive IgG western blot and indeterminate IgM from Igenex. What does everyone else think? Is it really an accurate statement to say Igenex testing is not recognized by the medical community? They are licensed aren't they? Are they recognised by insurance companies? > > Bob > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2009 Report Share Posted August 16, 2009 Some people can't clear lyme toxins, just like some people can't clear mold toxins. Maybe some of these people started wth Lyme but even though after some point the lyme infection is gone, the lyme toxins are still left in their bodies making them sick. Drois Re: Lyme tests Igenex testing is not recognized by the medical community as a legitimate lab. I tested positive there and it led me to do 6 months IV rocephin and 6 months oral antibiotics and I never felt even a little bit better. Even my wife, who is not sick, tested positive for lyme there. I rarely come across someone who didnt test positive for lyme at Igenex. It seems as though they will diagnose you with lyme when all other doctors have been unable to find a cause to your illness, but why would you want to be diagnosed with lyme if it really isnt? A LLMD will place you on antibiotics for a couple years and when you start feeling a bit better claim your treatment is done. But some cases of CFS get better within a few years anyway, so how could you even know if it was the couple years of ABX that helped you get better. I know a lady who has been on ABX for 21 years and still claims its lyme making her sick. I know another one who has been on IV antibiotics for 5 years now and still claims its lyme, just because Igenex said she was positive. In my opinion, if you have a dysfunctional immune system, any extra sensitive titer test results can be incorrect. Titer tests are measuring the molecular weight of antibodies you have. A dysfunctional immune system can produce a variety of dysfunctional antibodies, or maybe its just in Igenex's plan to give everyone a positive reading. . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2011 Report Share Posted February 1, 2011 > > Knotweed,  If the tests are so certain why are even the companies that do them so fractured on how to interpret them. IGENEX has one standard, other companies their own.CDC standards are all together different again. I'm not saying the tests are certain, the test TECHNOLOGY is certain. You can say fairly accurately what a specific test can or cannot detect. The problem with interpretation is first of all POLITICS, and secondly the problem that there are many different tests, e.g. there are probably 50 or so different Lyme tests worldwide, and at least a similar number of Lyme Western Blot and immunoblot tests. The CDC criteria are meant to be used for epidemiology. They want to be extremely sure that a lyme patient is really a lyme patient, and not someone with similar symptoms and a false positive test. If that means discarding 90% of the patients, so be it. CDC criteria are NOT for diagnostic purposes: in that case you want to make sure that you are not missing patients, and have to balance the risk of false positives (= unncessary treatment) with false negatives (= delayed or no treatment). Depending on the exact test technology the interpretation of the bands can vary a bit. CDC does not take this into account. IgeneX has their own test, so their diagnostic criteria can vary a bit from other labs doing Lyme Western Blots. Some tests use recombinant antigens, other use a lysate (souped-up Borrelia), etc. The trouble is that many labs (I'm sure IgeneX is not one of them) have never really checked the tests that they use with real patients. At best these tests have been validated by the manufacturer against some blood bank samples of CDC certified lymepatients (who are totally unrepresentative of all the different lyme patients in the real world). To put it simply: a Lyme Western Blot is NOT a Lyme Western Blot. You need to know exactly which test was used, which procedures the lab has been using, what criteria they use for interpretation, etc. Usually the doc and the patient don't know this, they just get the conclusion. And often even the lab itself does not know the details. And obviously in the US and elsewhere this interpretation is often heavily skewed against Lyme patients; but that is not science, it is politics. All the tests have their limitations, but current lyme tests are not that bad (technologically) compared to many other medical tests. The problem is in the interpretation, the fact that the outcome is often used as something that is 100% sure and again, this is mostly a political issue. In my country we are lobbying for a 'bijsluiter' (package leaflet?), like they include with all drugs. This should tell the doc and the patient which bands where detected, how the interpretation works, what the lab conclusion is (if any) and how sure the outcome statistically is, under which conditions the test will not work (e.g. when using corticosteroids or ABX), etc. Some labs (e.g. the Cologne lab in Germany, probably IgeneX) already use something like that, but most just say 'positive' or 'negative'. I just found some new Dutch research about Lyme test; this is for Europe, but I don't doubt it is similar to the US situation. They don't state it, but my conclusion would be that the tests are a lottery for patients. Abstract below. ___________ Large differences between test strategies for the detection of anti-Borrelia antibodies are revealed by comparing eight ELISAs and five immunoblots. We investigated the influence of assay choice on the results in a two-tier testing algorithm for the detection of anti-Borrelia antibodies. Eighty-nine serum samples from clinically well-defined patients were tested in eight different enzyme-linked immunosorbent assay (ELISA) systems based on whole-cell antigens, whole-cell antigens supplemented with VlsE and assays using exclusively recombinant proteins. A subset of samples was tested in five immunoblots: one whole-cell blot, one whole-cell blot supplemented with VlsE and three recombinant blots. The number of IgM- and/or IgG-positive ELISA results in the group of patients suspected of Borrelia infection ranged from 34 to 59%. The percentage of positives in cross-reactivity controls ranged from 0 to 38%. Comparison of immunoblots yielded large differences in inter-test agreement and showed, at best, a moderate agreement between tests. Remarkably, some immunoblots gave positive results in samples that had been tested negative by all eight ELISAs. The percentage of positive blots following a positive ELISA result depended heavily on the choice of ELISA-immunoblot combination. We conclude that the assays used to detect anti-Borrelia antibodies have widely divergent sensitivity and specificity. The choice of ELISA-immunoblot combination severely influences the number of positive results, making the exchange of test results between laboratories with different methodologies hazardous. PMID: 21271270 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2011 Report Share Posted February 1, 2011 Here's something I recently got that I think is pertinent to the discussion about testing. Note the conclusion! www.lyme-resource.com <http://www.lyme-resource.com/> You can lead a person to a fact, but you can't make them think! - _____ Eur J Clin Microbiol Infect Dis. 2011 Jan 27; [Epub ahead of print] Large differences between test strategies for the detection of anti-Borrelia antibodies are revealed by comparing eight ELISAs and five immunoblots. Ang CW, Notermans DW, Hommes M, Simoons-Smit AM, Herremans T. VUMC, Amsterdam, The Netherlands, <http://us.mc840.mail./mc/compose?to=w.angvumc (DOT) nl> w.ang@.... We investigated the influence of assay choice on the results in a two-tier testing algorithm for the detection of anti-Borrelia antibodies. Eighty-nine serum samples from clinically well-defined patients were tested in eight different enzyme-linked immunosorbent assay (ELISA) systems based on whole-cell antigens, whole-cell antigens supplemented with VlsE and assays using exclusively recombinant proteins. A subset of samples was tested in five immunoblots: one whole-cell blot, one whole-cell blot supplemented with VlsE and three recombinant blots. The number of IgM- and/or IgG-positive ELISA results in the group of patients suspected of Borrelia infection ranged from 34 to 59%. The percentage of positives in cross-reactivity controls ranged from 0 to 38%. Comparison of immunoblots yielded large differences in inter-test agreement and showed, at best, a moderate agreement between tests. ***Remarkably, some immunoblots gave positive results in samples that had been tested negative by all eight ELISAs.*** The percentage of positive blots following a positive ELISA result depended heavily on the choice of ELISA-immunoblot combination. We conclude that the assays used to detect anti-Borrelia antibodies have widely divergent sensitivity and specificity. The choice of ELISA-immunoblot combination severely influences the number of positive results, making the exchange of test results between laboratories with different methodologies hazardous. <http://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pubmed & id=21 271270 & retmode=ref & cmd=prlinks> http://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pubmed & id=212 71270 & retmode=ref & cmd=prlinks PMID: 21271270 [PubMed - as supplied by publisher] > [ ] lyme tests > > > > > > > > Knotweed,  If the tests are so certain why are even the > companies that do them so fractured on how to interpret them. > IGENEX has one standard, other companies their own.CDC > standards are all together different again. > > > I'm not saying the tests are certain, the test TECHNOLOGY is > certain. You can say fairly accurately what a specific test > can or cannot detect. The problem with interpretation is > first of all POLITICS, and secondly the problem that there > are many different tests, e.g. there are probably 50 or so > different Lyme tests worldwide, and at least a similar > number of Lyme Western Blot and immunoblot tests. > > The CDC criteria are meant to be used for epidemiology. They > want to be extremely sure that a lyme patient is really a > lyme patient, and not someone with similar symptoms and a > false positive test. If that means discarding 90% of the > patients, so be it. > > CDC criteria are NOT for diagnostic purposes: in that case > you want to make sure that you are not missing patients, and > have to balance the risk of false positives (= unncessary > treatment) with false negatives (= delayed or no treatment). > > Depending on the exact test technology the interpretation of > the bands can vary a bit. CDC does not take this into > account. IgeneX has their own test, so their diagnostic > criteria can vary a bit from other labs doing Lyme Western > Blots. Some tests use recombinant antigens, other use a > lysate (souped-up Borrelia), etc. > > The trouble is that many labs (I'm sure IgeneX is not one of > them) have never really checked the tests that they use with > real patients. At best these tests have been validated by the > manufacturer against some blood bank samples of CDC certified > lymepatients (who are totally unrepresentative of all the > different lyme patients in the real world). > > To put it simply: a Lyme Western Blot is NOT a Lyme Western Blot. > > You need to know exactly which test was used, which > procedures the lab has been using, what criteria they use for > interpretation, etc. Usually the doc and the patient don't > know this, they just get the conclusion. And often even the > lab itself does not know the details. And obviously in the US > and elsewhere this interpretation is often heavily skewed > against Lyme patients; but that is not science, it is politics. > > All the tests have their limitations, but current lyme tests > are not that bad (technologically) compared to many other > medical tests. The problem is in the interpretation, the fact > that the outcome is often used as something that is 100% sure > and again, this is mostly a political issue. > > In my country we are lobbying for a 'bijsluiter' (package > leaflet?), like they include with all drugs. This should tell > the doc and the patient which bands where detected, how the > interpretation works, what the lab conclusion is (if any) and > how sure the outcome statistically is, under which conditions > the test will not work (e.g. when using corticosteroids or > ABX), etc. Some labs (e.g. the Cologne lab in Germany, > probably IgeneX) already use something like that, but most > just say 'positive' or 'negative'. > > I just found some new Dutch research about Lyme test; this is > for Europe, but I don't doubt it is similar to the US > situation. They don't state it, but my conclusion would be > that the tests are a lottery for patients. Abstract below. > > ___________ > > Large differences between test strategies for the detection > of anti-Borrelia antibodies are revealed by comparing eight > ELISAs and five immunoblots. > > We investigated the influence of assay choice on the results > in a two-tier testing algorithm for the detection of > anti-Borrelia antibodies. Eighty-nine serum samples from > clinically well-defined patients were tested in eight > different enzyme-linked immunosorbent assay (ELISA) systems > based on whole-cell antigens, whole-cell antigens > supplemented with VlsE and assays using exclusively > recombinant proteins. A subset of samples was tested in five > immunoblots: one whole-cell blot, one whole-cell blot > supplemented with VlsE and three recombinant blots. > > The number of IgM- and/or IgG-positive ELISA results in the > group of patients suspected of Borrelia infection ranged from > 34 to 59%. The percentage of positives in cross-reactivity > controls ranged from 0 to 38%. Comparison of immunoblots > yielded large differences in inter-test agreement and showed, > at best, a moderate agreement between tests. Remarkably, some > immunoblots gave positive results in samples that had been > tested negative by all eight ELISAs. The percentage of > positive blots following a positive ELISA result depended > heavily on the choice of ELISA-immunoblot combination. > > We conclude that the assays used to detect anti-Borrelia > antibodies have widely divergent sensitivity and specificity. > The choice of ELISA-immunoblot combination severely > influences the number of positive results, making the > exchange of test results between laboratories with different > methodologies hazardous. > > PMID: 21271270 > > > > > > ------------------------------------ > > Buy Healing Lyme: Natural Healing And Prevention of Lyme > Borreliosis And Its Coinfections by Buhner at one of > these locations: > http://tinyurl.com/3bgm5d > > Quote Link to comment Share on other sites More sharing options...
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