CFS and Lyme... How many Lyme cases being missed in testing?

[LHCTom]

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?

 

[Valentijn]

I had the Western Blot a couple weeks ago. Completely negative on all bands - somewhat amazing considering all the ticks that munched on me when I was 13-14 and living in the woods

 

[LHCTom]

One of my tests was at Labcorp and all bands were negative. My test at Stony Brook had 4 bands. Another had 3 bands. So, that's my point. You may very well be negative but you may also be one test away from an answer.

 

[bluewillow]

I have no dx but I just had a lyme blood test the other day and now have to go back in the 10 day time frame to be retested. I'm assuming it's the updated testing as last time it was a one time blood test and this time it's twice and a government form had to be filled out by doctor. Later on my list is to see a CFS doctor if a bunch of blood work and MRI stuff comes back fine. Just my 2 cents.

Just to add I live in Ontario.

 

[Timaca]

LHCTom~ I've had a LOT of western blots done over the years at many different labs. Once I had my blood drawn on the same day and sent to 3 different labs. I got 3 different results on the WB. At non-Igenex labs I've tested positive to these IgG bands over the years: 28,29.30,41,43,45. And these IgM bands: 18,34,37,45,60,93. If you add in the Igenex labs I've tested positive to these IgG: 30,41, 45,58 and IgM: 23-25, 30,34, 29, 45, 58, 66, 83-93.

I also have had antibody titers as high as the lab meausres to Cpn IgG and IgA, Coxsackie B4 and HSV1 (with a positive IgM).

Do I have lyme? Maybe. I do think I have a chronic bacterial pathogen or pathogens causing my problems. I also think I have various viruses giving me problems.

I've had antibiotic treatment (with significant "herx") reactions. And antiviral treatment to (with interesting reactions as well). And I am significantly better than at the worst of my Illness, but I am not yet well. I hope to get there someday.

You mention being tested for several infectious diseases. Which ones were they? It appears that you weren't positive or you would have mentioned that.

It's good to take a broad look at all the possible causes of CFS and treat what seems to be most obviously wrong.

This website may interest you: http://chronicfatigue.stanford.edu/

Best, Timaca

 

[Esther12]

I'd be really cautious with alternative Lyme tests turning up false positives too.

It does seem like there's a problem with people selling tests and treatments to patients that do not have good evidence to support their use. In addition to that, those who have had Lyme disease cause chronic health problems are lacking in effective treatments anyway, and it looks like it could be another 'post-viral' problem, albeit with perhaps some unusual complications.

 

[Timaca]

I should clarify that all my "non-Igenex" labs were reputable labs such as MDL, SUNY Stonybrook, Focus, etc...

What is really needed is a good, accurate lab test for Lyme. There isn't one yet.

I need to win the lottery. Then I'd solve that problem along with CFS

Best, Timaca

 

[LHCTom]

I'd be really cautious with alternative Lyme tests turning up false positives too.

The C6 peptide is NOT an alternative test. Its been thoroughly vetted by many studies authored by IDSA researchers. Its FDA approved and has been shown to match or exceed the CDC 2 tiered test in most cases. Its also been shown to exceed in cases of varied Genotypes and even catches the European species. Ontario Canada has recently decided to use it as their screening test, breaking away from the CDC 2 tiered dogma.

The reason I'm bringing it up here is most CFS/ME patients have been tested using the CDC 2 tiered with US criteria and by many varied labs and were negative. I would think someone with CFS/ME would want to know if something was missed using a superior and vetted test unless they buy the dogma or like having a mystery illness. I've already been screened for everything on the Stanford testing list. I've was screened for NK function and various immune system test via Focus Diagnostics which showed problems throughout.

I went to Columbia's Tick Borne Research Lyme second opinion and they found the C6 positive at Stony Brook along with 3 Western Blot IgG positives. I followed that with 2 cultures to verify it which were both positive.

I then decided this was sufficient to be treated even though I was still not 100% convinced. I took a combination of Ceftin and Tinizadole for 6 months. I've been complete for 2 months and things remain improved. The impact was amazing and included:

8 years of high creatinine = diagnosed as moderate kidney disease dropped to normal on 3 tests.
8 years of high CK = muscle enzymes = muscle damage dropped to normal on 3 tests.
Chemical sensitivity = hives and angioedema stopped
Feeling ill all the time has stopped
Asthma stopped.
Muscle and joint pain stopped
Stomach and Gi problems diagnosed as IBS stopped.
Energy level improved
Neurological problems dropped significantly
CD57 improved from 60 -> 90
HHV-6 titers dropped by 2:1
Immune system irregularities of low CD3 and low CD8 all improved except IgG 1/3 subclasses are still low
Regular high EOS seems to have stopped on CBC

I'm waiting on a new C6 and culture followup test. If I hadn't gone to Columbia and discovered the C6 and then culture, I wouldn't have done the trial treatment and everything above would probably have continued. There may still be something else going on but its amazing what stopped.

That's why I am curious if anyone else has had the test - which IS NOT Alternative! Its mainstream.

 

[Timaca]

I have had the C6 test done a couple of times. It was negative for me. I was also evaluated at Columbia and was found to have "probable" Lyme disease. I was put on IV rocephin for 6 1/2 months. This helped me tremendously, but when the picc line was pulled, due to a fungal infection in the line, all my symptoms which had gone away came back and hit me like a freight train.

I've been on other antibiotics since (all with a "herx" reaction) and some antivirals too.

That is great that you've seen so much improvement!!! Thanks for sharing!

Best, Timaca

 

[soxfan]

I was also on Rocephin for 6 months and felt about 80 percent of what I use to be. Then I had gallbladder attack and had to have my line removed as well...my symptoms all came back within a few months. In spite of many other abx including bicillin injections I have never been able to get back to where I was with the Rocephin...

 

[GcMAF Australia]

LHCTom~ I've had a LOT of western blots done over the years at many different labs. Once I had my blood drawn on the same day and sent to 3 different labs. I got 3 different results on the WB. At non-Igenex labs I've tested positive to these IgG bands over the years: 28,29.30,41,43,45. And these IgM bands: 18,34,37,45,60,93. If you add in the Igenex labs I've tested positive to these IgG: 30,41, 45,58 and IgM: 23-25, 30,34, 29, 45, 58, 66, 83-93.

I also have had antibody titers as high as the lab meausres to Cpn IgG and IgA, Coxsackie B4 and HSV1 (with a positive IgM).

Do I have lyme? Maybe. I do think I have a chronic bacterial pathogen or pathogens causing my problems. I also think I have various viruses giving me problems.

I've had antibiotic treatment (with significant "herx") reactions. And antiviral treatment to (with interesting reactions as well). And I am significantly better than at the worst of my Illness, but I am not yet well. I hope to get there someday.

You mention being tested for several infectious diseases. Which ones were they? It appears that you weren't positive or you would have mentioned that.

It's good to take a broad look at all the possible causes of CFS and treat what seems to be most obviously wrong.

This website may interest you: http://chronicfatigue.stanford.edu/

Best, Timaca

It is interesting Timaca that you have Chlamydia pneumonia (spelling?).
This critter is turning up a lot in many diseases.
Chronic Illness Recovery https://chronicillnessrecovery.org/
Has had some success with Lyme and other things that are bacterial related

 

[GcMAF Australia]

The C6 peptide is NOT an alternative test. Its been thoroughly vetted by many studies authored by IDSA researchers. Its FDA approved and has been shown to match or exceed the CDC 2 tiered test in most cases. Its also been shown to exceed in cases of varied Genotypes and even catches the European species. Ontario Canada has recently decided to use it as their screening test, breaking away from the CDC 2 tiered dogma.

The reason I'm bringing it up here is most CFS/ME patients have been tested using the CDC 2 tiered with US criteria and by many varied labs and were negative. I would think someone with CFS/ME would want to know if something was missed using a superior and vetted test unless they buy the dogma or like having a mystery illness. I've already been screened for everything on the Stanford testing list. I've was screened for NK function and various immune system test via Focus Diagnostics which showed problems throughout.

I went to Columbia's Tick Borne Research Lyme second opinion and they found the C6 positive at Stony Brook along with 3 Western Blot IgG positives. I followed that with 2 cultures to verify it which were both positive.

I then decided this was sufficient to be treated even though I was still not 100% convinced. I took a combination of Ceftin and Tinizadole for 6 months. I've been complete for 2 months and things remain improved. The impact was amazing and included:

8 years of high creatinine = diagnosed as moderate kidney disease dropped to normal on 3 tests.
8 years of high CK = muscle enzymes = muscle damage dropped to normal on 3 tests.
Chemical sensitivity = hives and angioedema stopped
Feeling ill all the time has stopped
Asthma stopped.
Muscle and joint pain stopped
Stomach and Gi problems diagnosed as IBS stopped.
Energy level improved
Neurological problems dropped significantly
CD57 improved from 60 -> 90
HHV-6 titers dropped by 2:1
Immune system irregularities of low CD3 and low CD8 all improved except IgG 1/3 subclasses are still low
Regular high EOS seems to have stopped on CBC

I'm waiting on a new C6 and culture followup test. If I hadn't gone to Columbia and discovered the C6 and then culture, I wouldn't have done the trial treatment and everything above would probably have continued. There may still be something else going on but its amazing what stopped.

That's why I am curious if anyone else has had the test - which IS NOT Alternative! Its mainstream.

I am glad you have improved LHCTom

 

[Foggy]

I used to work in a serology lab years and did lots of Lyme testing (IgG/IgM combo) - any positives/equivocals were then sent off for immunoblot confirmation, but only if the sample was syphillis (treponema pallidum) negative. From memory, syphillis and Lyme's somehow cross-react (don't ask me how).

Is this "rule out testing" done in other labs around the world, or is it just daft ole Perth?

 

[anciendaze]

I used to work in a serology lab years and did lots of Lyme testing (IgG/IgM combo) - any positives/equivocals were then sent off for immunoblot confirmation, but only if the sample was syphillis (treponema pallidum) negative. From memory, syphillis and Lyme's somehow cross-react (don't ask me how).

Is this "rule out testing" done in other labs around the world, or is it just daft ole Perth?

Both borrelia burgdorferi and treponema pallidum are spirochetes. This is way too close a resemblance to dismiss casually. Untreated syphillis is a chronic disease with devastating sequellae impacting nearly every organ system.