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What viruses do I need to test for?

Pink

Senior Member
Messages
574
Location
Tri state area
I was tested a few diff times for lymes, Epstein barr, lupus, parvovirus, rheumatoid arthritis. Those were either totally negative or just previous infections.

I know I've seen ppl mention viruses to test for- enterovirus maybe? Or HH something?

Can anyone clarify what viruses I should be tested for?

Thanks
 
Messages
57
I'm by no means the most informed but some viral tests that I've seen suggested are:
  • Cytomegalovirus (CMV)
  • Herpes Simplex 1 & 2 (HSV1 & HSV2)
  • Herpesvirus 6 (HHV6)
  • Lyme Coinfections (Bartonella, Babesia, etc.)
  • Enterovirus & Echovirus Panels (@Hip seems to be much more informed on Enterovirus and the work of Dr. John Chia but he recommends only the neutrilization test done through ARUP labs, I'm also interested in getting this test done but not sure how to really go about it).
Also if you search for CFS/ME roadmap you'll see the guide for tests that @Hip has shared, its a very thorough document.
 

Hip

Senior Member
Messages
17,824
The main set of pathogens linked to ME/CFS are:

Enteroviruses: coxsackievirus B and echovirus — Dr Chia says ARUP Lab has the only reliable blood test
Herpesviruses: Epstein-Barr virus, HHV-6 and cytomegalovirus
Also: Chlamydia pneumoniae and parvovirus B19

ME/CFS specialists will usually use antibody tests to measure your antibody titers (IgM and IgG antibodies) to these pathogens.

The problem though is not just getting these tests, but interpreting them. ME/CFS specialists interpret the results of these tests in a different way to regular infectious disease specialists: basically, ME/CFS specialists will diagnose and treat active infection if you have high IgG titers; whereas regular infectious disease doctors will ignore high IgG titers (saying that such high IgG titers are from a past infection).

So unless you go to an ME/CFS specialist, it may be hard to interpret your results.
 
Last edited:

Wonkmonk

Senior Member
Messages
1,006
Location
Germany
I'd add Varicella Zoster Virus to the list (see latest lecture of Dr Montoya).

Dr Lerner additionally recommends testing of several bacterial co-infections:
Anaplasma phagocytophilia
Mycoplasma pneumoniae
Streptococcal infection (antistreptolysin O)

Others were mentioned already.
 

jason30

Senior Member
Messages
513
Location
Europe
The main set of pathogens linked to ME/CFS are:

Enteroviruses: coxsackievirus B and echovirus — Dr Chia says ARUP Lab has the only reliable blood test
Herpesviruses: Epstein-Barr virus, HHV-6 and cytomegalovirus
Also: Chlamydia pneumoniae and parvovirus B19

ME/CFS specialists will usually use antibody tests to measure your antibody titers (IgM and IgG antibodies) to these pathogens.

The problem though is not just getting these tests, but interpreting them. ME/CFS specialists interpret the results of these tests in a different way to regular infectious disease specialists: basically, ME/CFS specialists will diagnose and treat active infection if you have high IgG titers; whereas regular infectious disease doctors will ignore high IgG titers (saying that such high IgG titers are from a past infection).

So unless you go to an ME/CFS specialist, it may be hard to interpret your results.


@Hip I have requested some viruses test by redlab and they don't measure it through antibod's but instead:

"We perform PCRs on blood or biopsies or other body fluids (like saliva, lumbar puncture, etc). For Parvo, EBV and CMV l would better reccomend immunoblots on serum. H. Pylory can be assesed by immunoblot in serum and/or in stool by immunochromatography."

I have requested these viruses tests:
HHV-6,
HHV-7,
HHV-8,
Parvovirus,
Epstein Bar Virus,
Cytomegalovirus,
West Nile virus,
Coxsackie virus,
H. Pylori

Do you know if PCRs are reliable on above virus tests?
 

Hip

Senior Member
Messages
17,824
Most ME/CFS specialists seem to use antibody tests (which measure the immune response to a virus) rather than blood PCR tests (which tries to directly detect the virus in the blood).

This is because you often do not find viruses in the blood in ME/CFS; they are instead found in the tissues. Dr Dantini for example thinks that blood PCR tests are of no use for herpesvirus testing in the case of ME/CFS.

Dr John Chia found that in ME/CFS patients with chronic enterovirus infections, even the most sensitive blood PCR tests would only detect these infections in around 1 in 3 patients, and so 2 in 3 patients would get a false negative result from this blood PCR test.

Whereas the enterovirus (coxsackievirus B and echovirus) antibody tests performed at ARUP Lab using the neutralization method proved reliable (other methods of enterovirus antibody testing like ELISA, IFA and CFT are not that reliable). The Hellenic Pasteur Institute in Greece also offer coxsackievirus B antibody tests by neutralization at a very good price.

I wrote to the lab director of RedLabs explaining this issue about blood PCR testing in ME/CFS, and asking why RedLabs offered PCR tests when most ME/CFS doctors use antibody tests. But he did not seem to want to engage in much discussion.


Some ME/CFS doctors like Dr Peterson will use PCR on cerebrospinal fluid from a lumbar puncture; I am not sure of how reliable this is. So generally ME/CFS doctors use antibody tests.



But you need an ME/CFS doctor to interpret your antibody test results. If your antibody titers are high enough, you will be diagnosed with a chronic active infection. But that diagnosis requires an ME/CFS doctor's expertise.

Dr Daniel Dantini diagnoses a chronic active infection in ME/CFS patients when IgG antibody titers are at least 4 times higher than the average IgG titers that a group of healthy people would get on the same test. Ref: here. Having higher than average titers is the way most ME/CFS doctors diagnose chronic active infection.

So unless you know what the average titers are for a particular test, it is hard to know whether you have a chronic active infection or not. You will not find this information on your test results.

Regular infectious disease specialists will often ignore the high IgG titers frequently found in ME/CFS patients, interpreting such high titers as just a past infection (which is why going to see an infectious disease doctor is usually of little help in the case of ME/CFS).

Whereas ME/CFS specialist doctors interpret these high titers as evidence of a chronic active infection, and will then treat with appropriate antivirals or immunomodulators (which published studies have shown can make major improvements).
 

jason30

Senior Member
Messages
513
Location
Europe
Thanks for this valuable information @Hip , this really helps.

Too bad that RedLabs is not open to the discussion.

I've contacted ARUP Lab and they also offer their tests to people living in Europe, so that's great.
After the tests I will check for a ME/CFS doctor to interpret the results.

Thanks again!