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I was diagnosed with CFS/ME. I had been screened for most infectious diseases including 4 different lyme CDC 2 tiered ELISA plus Western Blots. All 4 Western Blots were negative by the CDC 2/3 IgM and 5/10 IgG bands criteria. All 4 were from different labs and all 4 were different. Collectively IgG bands 18, 34, 39, 41, 58 and 64 were positive but collectively isn't a positive. Having these bands found seemed very suspicious. Having 4 completely different results seemed absurd. This made me wonder what was going on. I began searching PubMed and reading Lyme research. A few things jumped out after downloading and reading >100 peer reviewed papers.
1) The biodiversity of the Borrelia spirochete across the world and North America is large and growing
see NCBI taxonomy browser
2) In Europe, multiple species caused the CDC 2 tiered test approach to be replaced with immunoblots capable of catching the species found there including Borrelia afzelii, B. garinii and Bb ss
3) In North America, 3-4 species and wide B.b ss. genotypes have been found and associated with infections but fully acknowledged by the Medical World yet.
4) North American researchers including those in the IDSA acknowledge genotype does impact testing sensitivity and specificity considerably.
5) In Canada, CDC 2 tiered testing failures have led to the discovery of European species of lyme in Canada.
6) Canada is becoming more suspicious and Ontario has switched from a US CDC 2 tiered strategy to one using a C6 ELISA and if positive its forwarded to their National Lab for European species testing with Euroline
I could go on but there is a theme here that might be important to CFS/ME people like me:
Evidence is growing that most US CDC 2 tiered testing is failing in part due to the species and strain diversity. Most CFS/ME people have been screened for Lyme like me using this CDC testing. If it failed as in my case 4 times, some percentage of people with CFS/ME might actually have Lyme. There is a fairly simple and readily available Lyme test that is better than the CDC test. Its been thoroughly vetted and has been shown to catch a wider variety of genotypes and species. Its the C6 peptide test. I'm curious how many people with CFS/ME have had this test? I was very positive by C6 and that led me to be cultured which was positive twice. So how many people might discover the same thing if more thoroughly tested?
1) The biodiversity of the Borrelia spirochete across the world and North America is large and growing
see NCBI taxonomy browser
2) In Europe, multiple species caused the CDC 2 tiered test approach to be replaced with immunoblots capable of catching the species found there including Borrelia afzelii, B. garinii and Bb ss
3) In North America, 3-4 species and wide B.b ss. genotypes have been found and associated with infections but fully acknowledged by the Medical World yet.
4) North American researchers including those in the IDSA acknowledge genotype does impact testing sensitivity and specificity considerably.
5) In Canada, CDC 2 tiered testing failures have led to the discovery of European species of lyme in Canada.
6) Canada is becoming more suspicious and Ontario has switched from a US CDC 2 tiered strategy to one using a C6 ELISA and if positive its forwarded to their National Lab for European species testing with Euroline
I could go on but there is a theme here that might be important to CFS/ME people like me:
Evidence is growing that most US CDC 2 tiered testing is failing in part due to the species and strain diversity. Most CFS/ME people have been screened for Lyme like me using this CDC testing. If it failed as in my case 4 times, some percentage of people with CFS/ME might actually have Lyme. There is a fairly simple and readily available Lyme test that is better than the CDC test. Its been thoroughly vetted and has been shown to catch a wider variety of genotypes and species. Its the C6 peptide test. I'm curious how many people with CFS/ME have had this test? I was very positive by C6 and that led me to be cultured which was positive twice. So how many people might discover the same thing if more thoroughly tested?