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Treating with anti-virals without identified pathogen

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87
In the absence of any identified pathogen after lab testing, is there any big risk by proceeding with Martin Lerner's treatment protocol of Valtrex (valacyclovir)?

Also, because Adderall and Albuterol are the only drugs that have improved symptoms so far (implicating POTS too), is there any reason why they are harmful to treatment. I do understand that just because I feel better on them, I still need to eat without skipping meals and can't over-exercise.
 
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Wonkmonk

Senior Member
Messages
1,003
Location
Germany
No, it's a very safe drug (although like any drug not riskfree).

What were your herpes virus test results?
 
Messages
87
What were your herpes virus test results?
That is the general consensus I have from several treating doctors who are now outside of their areas don't know what to do next.

  • I tested negative for CMV and HHV-6
  • EBV tested positive for IgM, but is most likely a false positive. The antbodies of repeat testing 6 months later indicates that I've likely never been infected with EBV. That is unusual, but not unheard of. There are a lot of pathogens implicated in a false positive for EBV.
  • I have not been tested for HSV 1 or 2.
  • I have not been tested for a reactivation of HHV-3, but I've had chickenpox, so it is worth checking.

coxsackie b virus and Entrovirus results should be availe next week.
 

Hip

Senior Member
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17,771
I tested negative for CMV and HHV-6

It would be very unusual not to be positive for HHV-6, since this virus is found in nearly 100% of adults. Maybe you meant you were positive but have an inactive past infection?



EBV tested positive for IgM, but is most likely a false positive.

By Dr Lerner's reckoning, elevated titers in he EBV IgM VCA test and/or the EBV EA diffusetest by ELISA indicate active EBV infection. See the mini roadmap.



There are a lot of pathogens implicated in a false positive for EBV.

Would you know offhand what those pathogens are?
 
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Wonkmonk

Senior Member
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1,003
Location
Germany
To be seronegative (i.e. no IgG antibodies) for CMV, HHV6 and EBV is nearly impossible. 99% of 40 year olds are HHV6 IgG positive and 98% EBV IgG positive, so not having both would be kind of unique.

Are you sure you interpreted the results correctly? Would you mind posting the numbers?
 
Messages
87
It would be very unusual not to be positive for HHV-6, since this virus is found in nearly 100% of adults. Maybe you meant you were positive but have an inactive past infection?

HHV-6 IgM is 1:320 and IgM is IgG is 1:20. "negative"as in igM is negative and the virus isn't active. I've obviously had it. These are in range for normal.

CMV IgG and IgM tested negative

Would you know offhand what those pathogens are?

There are two that I know of. There was a paper published (very small sample size n=2) that documented an observed possible correlation with Lyme disease. Also see (http://cvi.asm.org/content/16/3/372.full) Parvovirus B19. In particular note that they write that they took six samples of previous EBV false positive samples out of the freezer and retest them for Parvovirus B19 and only one tested positive meaning that the other 5 samples had other pathogens causing false positive results for EBV.
 

Wonkmonk

Senior Member
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1,003
Location
Germany
In your other thread, you indicate that there could well be an identified pathogen, actually two: M. Pneumoniae and B. Burgdorferi (Lyme), so if you wish to follow Dr Lerner's protocol, that should be confirmed and if positive, treated first.

I think HHV-6 IgG 1:320 warrants treatment according Dr. Lerner and also Dr. Montoya's guidelines, but the treatment would be Valcyte and not Valtrex, and Valcyte has a lot more side effects than Valtrex, which compared to Valcyte is very safe.

I wouldn't say Valcyte, the drug you'd likely need for HHV-6 is "safe". It has substantial risks, e.g. hepatotoxicity and nephrotoxicity. It may also be carcinogenic and impair fertility.

Many people here on the forum and in the studies have taken it without serious adverse effects, but it definitely is not a low-risk drug like Valtrex.
 
Messages
87
I think HHV-6 IgG 1:320 warrants treatment according Dr. Lerner and also Dr. Montoya's guidelines, but the treatment would be Valcyte and not Valtrex, and Valcyte has a lot more side effects than Valtrex, which compared to Valcyte is very safe.
This is dead center normal and Lerner writes, "Human herpes virus 6 infection is made with an elevated titer at least twice normal." so he wouldn't consider this active.
 

Wonkmonk

Senior Member
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1,003
Location
Germany
In my lab the normal range for HHV6 is <1:16. But I think Hip has the exact cutoffs of the studies performed.
 
Messages
87
This is the labcorp report. Note that 1:320 is the median IgG in apparently healthy adults. Dr. Lerner requires twice normal to consider it active.
 

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Wonkmonk

Senior Member
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1,003
Location
Germany
Dr Montoya relies on the IgG test:

Professor Jose Montoya says that in the Quest HHV-6 IgG IFA test, an IgG antibody titer of 1:320 or higher is indicative of an active HHV-6 infection. Ref: 1

As I understand Dr Lerner, he also relies on IgG and an elevated IgM ist not a must:

http://www.treatmentcenterforcfs.com/documents/mecfstreatmentresourceguideforpractitioners.pdf

But don't get me wrong, I don't want to talk you into any particular treatment. I'm just saying, as I see it, you probably need Valcyte.

But the best approach would without a doubt be to see a CFS specialists and ask for his/her advice on further treatment.
 

Hip

Senior Member
Messages
17,771
HHV-6 IgM is 1:320 and IgM is IgG is 1:20. "negative"as in igM is negative and the virus isn't active. I've obviously had it. These are in range for normal.

A HHV-6 IgG of 1:320 would make you positive for HHV-6. A positive antibody test means you either had the infection in the past, but it is now dormant because your immune system is making antibodies to keep the virus under control; or positive can mean you have a current active infection.

Negative antibody test means that you have never been exposed to the virus in your life (or at least not in recent decades).



This is dead center normal and Lerner writes, "Human herpes virus 6 infection is made with an elevated titer at least twice normal." so he wouldn't consider this active.

If you look at the mini roadmap both Dr Lerner and Dr Montoya's rules for diagnosing active HHV-6 infection in ME/CFS are given:
Antibody titers of 1:160 or higher in the LabCorp HHV-6 IgM test and the LabCorp HHV-6 IgG test indicate active HHV-6 infection, says Dr Lerner.

Alternatively, antibody titers of 1:320 or higher in the Quest HHV-6 IgG IFA test indicate active HHV-6 infection, says Dr Montoya.

If you take a test with different labs to the above, then these threshold titer figures may not apply, as they only apply to the labs specified (LabCorp and Quest).
 
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Messages
87
Hmm. Mini roadmap is clearer.
In any case, a second test is being done at Cleveland Clinic (which probably went out to a reference lab). I should see those results next week.
 

Hip

Senior Member
Messages
17,771
Hmm. Mini roadmap is clearer.

Yeah, I am trying to make an easier-to-read summary of the full roadmap. The full roadmap contains much more info, so can be confusing and lengthy, especially when for those with brain fog (which includes me), so I started experimenting with the mini roadmap.

If you have any suggestions on how to further increase clarity, please post those on the roadmap thread.



In any case, a second test is being done at Cleveland Clinic (which probably went out to a reference lab). I should see those results next week.

The trouble with testing is that doctors like Lerner and Montoya (and Dr Chia as well) use specific laboratories, and the threshold titer level for active infection diagnosis will vary slightly from lab to lab, also vary by antibody testing method (antibody titers can be tested by several methods, including ELISA, IFA, neutralization, and others).
 

pattismith

Senior Member
Messages
3,925
The trouble with testing is that doctors like Lerner and Montoya (and Dr Chia as well) use specific laboratories, and the threshold titer level for active infection diagnosis will vary slightly from lab to lab, also vary by antibody testing method (antibody titers can be tested by several methods, including ELISA, IFA, neutralization, and others).

maybe knowing the tresholds of these labs would helps to extrapolate the other labs results...just an idea...
 

ScottTriGuy

Stop the harm. Start the research and treatment.
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1,402
Location
Toronto, Canada
99% of 40 year olds are HHV6 IgG positive

I thought it was odd that my PCR results show HHV 6A and 6B as 'not detected'.

Seems like I've got all the others including HIV and CVB, but not Hep B and C, but I kind of doubted the HHV results when I got it 3 years ago (when I was 49).
 

Hip

Senior Member
Messages
17,771
I thought it was odd that my PCR results show HHV 6A and 6B as 'not detected'.

PCR detects viral infection in the blood, which you will have during an acute infection or a reactivated infection. But in enterovirus-associated ME/CFS, the enterovirus infections are known to be in the tissues (eg muscle and gut tissues), which is why PCR on the blood for enterovirus is often negative.

In Dr Lerner's abortive herpesvirus infection theory of ME/CFS, it is also believed that the herpesvirus infection resides in the tissues, not the blood, hence possibly why blood PCR for herpesviruses can be negative.

Antibody tests do not measure the viral infection directly, but measure the immune response to the infection, so these antibody tests can detect infections hidden in the tissues.

Which is why some ME/CFS specialist doctors believe that the high antibody titers often found in ME/CFS are an indication of an infection in the tissues (and in the case of enterovirus, if you perform a PCR on a muscle tissue biopsy, rather than the blood, you often get a positive result, proving that there is infection in the tissues).

But other researchers think these high titers may not reflect any infection, but just be due to immune dysfunction. So nothing is clearcut.

But the bottom line is that ME/CFS doctors who treat ME/CFS infections indicated by high titers (with antivirals or immunomodulators) do get good results, which have been published in clinical trial studies. So for practical purposes in a clinical setting, these high titers are useful indicators of which treatment to administer.
 

Hip

Senior Member
Messages
17,771
maybe knowing the tresholds of these labs would helps to extrapolate the other labs results

I think you really need to validate each lab or testing method to do it properly. This is what Dr Chia did with ARUP Lab: he sent hundreds of blood samples from ME/CFS patients and hundreds of healthy controls to ARUP, to work out statistically the threshold for a chronic active infection.

See the image in this post for Dr John Chia's validation tests for enterovirus antibody titers.