Thoughts on Labs and where to go Next?

[Swim15]

So I got my Echovirus and Coxsackie virus labs back today from ARUP and was not what I was expecting...


Echovirus 6 was the only thing that popped up with a titer of 40 on the ARUP antibody neutralization test so it looks like enteroviruses are likely not my issue even though previous testing made me think that.


Next up for testing would be a endoscopy/biopsy I suppose but that do you guys think?

HHV6 was low, 1:40 I believe.
HHV7 was negative
Echovirus (ARUP) negative
Coxsackie virus (ARUP) negative
EBV - was slightly elevated (don't have the labs in front of me) but nothing like the titers we see in CFS


What would you guys check next besides an endoscopy/biopsy?

 

[gbells]

Cytomegalovirus, Bartonella/rickettsia/lyme if you have a history of outdoors or animal exposures.

 

[mitoMAN]

How were your previous Echovirus & Enterovirus Titers? Were they high?

 

[Swim15]

Cytomegalovirus, Bartonella/rickettsia/lyme if you have a history of outdoors or animal exposures.

Should have listed those. CMV was negative as was lyme. I haven't shown any herx reactions to all the stuff I've done so, while I know theres a somewhat high false negative rate for lyme, it makes me less concerned since I likely would have had some bad herx reactions by now

 

[Swim15]

How were your previous Echovirus & Enterovirus Titers? Were they high?

No, they werent. This was the first time checking them.

I did a coxsackie antibody test originally through quest which came back with CVB1 at 1:8 and CVB6 at 1:16 so I figured those would show up on the antibody neutralization test but they didn't and I trust the antibody neutralization test more - also considering that those CVB serotypes are not very common.

 

[mitoMAN]

mhm yeah I would not waste too much energy on those then. Mine are 1:320 and 1:240, so I agree that the NIT is the best option to testing we have.

Did you check PARVOVIRUS IgM and DNA?
I will let you know if ARBIDOL helps me with CVB5. In that case you could give it a trial just to rule out the option? I read that CVB can manifest in organs and muscle and can stay latent - just like Herpes. Without big Titers popping.

 

[Swim15]

mhm yeah I would not waste too much energy on those then. Mine are 1:320 and 1:240, so I agree that the NIT is the best option to testing we have.

Did you check PARVOVIRUS IgM and DNA?
I will let you know if ARBIDOL helps me with CVB5. In that case you could give it a trial just to rule out the option? I read that CVB can manifest in organs and muscle and can stay latent - just like Herpes. Without big Titers popping.

NIT?

And yeah that's why I'd trust the ARUP test with coxsackie virus and not the quest test.

Will probably start throwing darts at this point while I hope the nitrous oxide keeps up the benefits I'm seeing.

 

[mitoMAN]

NIT?

And yeah that's why I'd trust the ARUP test with coxsackie virus and not the quest test.

Will probably start throwing darts at this point while I hope the nitrous oxide keeps up the benefits I'm seeing.

NIT is the german abreviation for Neutralization Testing. Those were 1:320 and 1:240 for me (measured at german IMD Lab)

 

[Swim15]

Just got my full lab work and will list below:

Parvo B19 - negative IgG and I

Coxsackie B1 1:8 (quest antibody test)
Coxsackie B6 1:16 (quest antibody test)

Coxsackie B1-6 antibody neutralization (ARUP) - negative

Echovirus

Chlamydia trachomatis - negative IgG, IgM, IgA

EBV viral capsid AG IgM - negative
EBV viral capsid AG IgG - 128.0 HIGH (<18 for negative)
EBV nuclear AG IgG - 26.60 HIGH (<18 for negative)

HSV1/2 - negative

HHV6 IgG - 1:40 high
HHV6 IgM - negative

MARCoNS - negative



Next I’m planning to...

1. Parvo 19 DNA via PCR

2. Getting my teeth, gums, mouth checked thoroughly at the dentist since I’m slightly behind schedule

3. Get my throat and sinuses looked at by an ENT


Any other thoughts?

 

[Pyrrhus]

Well, the good news is that you appear to test negative on everything except EBV. You can check your EBV test for the IgG levels of the early antigen (EA). This might give you an idea if your EBV has been reactivated or is quiescent. @Hip would probably know more details about the EBV test.

The bad news, of course, is that there are hundreds of possible infections for which there is no diagnostic test available. The tests you have run really are just the tip of the iceberg.

Chlamydia trachomatis - negative IgG, IgM, IgA

This sounds like the lab or doctor screwed up and tested you for the sexually transmitted infection Chlamydia Trachomatis, instead of for the respiratory infection Chlamydia Pneumoniae. Only the respiratory infection Chlamydia Pneumoniae has been linked to ME.

HSV1/2 - negative

Interesting. Most people test positive for HSV1, the virus that causes cold sores. Have you never had a cold sore?

Parvo 19 DNA via PCR

This is generally a more useful test than the Parvo B19 antibody test, since the PCR test looks for an active infection, not just evidence of a past infection. Although most active infections are hard or impossible to detect in the blood, Parvo B19 is an exception since it primarily infects blood cells.

However, since you tested negative for antibodies to Parvo B19, it may not be worthwhile in your case to test for an active infection of Parvo B19.

Perhaps you might consider testing for "Total Immunoglobulins", which would tell you the total number of IgG antibodies and IgM antibodies you have. If it turns out that you have an IgG or IgM deficiency, then all the test results above could be wrong. If you have such a deficiency (known as hypogammaglobulinemia) then all your antibody testing might be affected.

Another useful test is the "IgG Subclass" test, which breaks down your total IgG levels by subclass. Sometimes someone has a normal level of total IgG, but a deficiency in a particular IgG subclass.

Hope this helps.

 

[gbells]

Well, the good news is that you appear to test negative on everything except EBV. You can check your EBV test for the IgG levels of the early antigen (EBNA). This might give you an idea if your EBV has been reactivated or is quiescent. @Hip would probably know more details about the EBV test.

No, he is positive for chronic HHV6.

 

[Swim15]

No, he is positive for chronic HHV6.

I’m positive for a past infection

 

[gbells]

I’m positive for a past infection

HHV6 is for life.

 

[Swim15]

@Pyrrhus appreciate the thoughts! I’ll go back to the doc on chlamydia testing and the other stuff you mentioned with immunoglobulins.

what test exactly am I looking for for the chlamydia?

I know this is just the tip so just taking advice on which tests you guys would go after next or if there’s any that might Help put together a better picture - one thought was testing RNase L but I’m not sure how easy that actually is.

Gonna try to put together a game plan to take to my doc in the next few days and also get a referral for a second opinion.

 

[Swim15]

HHV6 is for life.

Oh yeah, a lot of viruses are. It just isn’t anywhere near the numbers that CFS docs are looking for and only the IgG was positive.

Still going to try and talk my doc into a 6 month antiviral course anyways though just to cover bases hopefully.

 

[Hip]

Dr Martin Lerner says ME/CFS patients have an active EBV infection if there are high antibody levels in the VCA IgM and/or EA IgG diffuse tests. Refs: 1 2

Your VCA IgG is negative, but you have not been tested for EA IgG. So from Lerner's perspective, EBV testing is not complete.

Confusingly, Prof Montoya had his own EBV criteria, with active infection indicated by high VCA IgG and EA IgG (but he also required high HHV-6 IgG). Your VCA IgG is pretty high, so by Montoya's criteria, perhaps you might be positive. Refs: 1 2

Your VCA IgG is a little high, but not sure if it is high enough to class as an active infection.



Have you been tested for cytomegalovirus IgG, @Swim15? This is an important ME/CFS virus.

Dr Martin Lerner says high levels of cytomegalovirus IgG antibodies indicate an active infection in ME/CFS. Dr Lerner says testing CMV IgM levels has no relevance in ME/CFS. Ref: 1

 

[Swim15]

@Hip thank you as always.

I did get checked for CMV but I need to see how recent that lab was. Going through hundreds of results and thought I listed that one but didn’t

 

[Swim15]

Currently retesting for all of these some new/some old - anyone have any additions they can think of? Trying to check fucking everything before I go out to Stanford in a few months

• Complement, Total (CH50)
• Total immunoglobulins (talked to several patients with 'normal' viral titers that were in fact high and masked by overall low immunoglobulins)
• IgG Subclass immunoglobulins
• NK cell count - this is a little more specialized but favorited by some specialty practitioners like Dr Kilmas and Dr Ray at the NOVA neuro institute - who are also, unfortunately, not accepting new patients. Not sure if you have any pull there
• Redraw of all EBV viral labs possible including EA IgG and DNA by PCR
• Testing for Chlamydia Pneumoniae (IgG and IgM)
• Mycoplasma pneumoniae IgG antibodies
• Parvovirus B19 PCR
• CD4:CD8 ratio
• Hydrogen/Methane breath test
• Any and all additional viral/bacterial tests my doc can think of

 

[gbells]

Currently retesting for all of these some new/some old - anyone have any additions they can think of? Trying to check fucking everything before I go out to Stanford in a few months

• Complement, Total (CH50)
• Total immunoglobulins (talked to several patients with 'normal' viral titers that were in fact high and masked by overall low immunoglobulins)
• IgG Subclass immunoglobulins
• NK cell count - this is a little more specialized but favorited by some specialty practitioners like Dr Kilmas and Dr Ray at the NOVA neuro institute - who are also, unfortunately, not accepting new patients. Not sure if you have any pull there
• Redraw of all EBV viral labs possible including EA IgG and DNA by PCR
• Testing for Chlamydia Pneumoniae (IgG and IgM)
• Mycoplasma pneumoniae IgG antibodies
• Parvovirus B19 PCR
• CD4:CD8 ratio
• Hydrogen/Methane breath test
• Any and all additional viral/bacterial tests my doc can think of

The problem is that there is no medical treatment to eliminate chronic viruses so while we can identify the culprits we don't have any treatments to eliminate them and we are stuck managing symptoms and coping with the disease. Why are no vaccinations for EBV, HHV6, etc despite the fact that we know they are harmful?

 

[Swim15]

The problem is that there is no medical treatment to eliminate chronic viruses so while we can identify the culprits we don't have any treatments to eliminate them and we are stuck managing symptoms and coping with the disease. Why are no vaccinations for EBV, HHV6, etc despite the fact that we know they are harmful?

That’s not true at all. If it’s a viral trigger, which mine doesn’t seem to be currently, there are plenty of antiviral success stories out there.

Combine that with synergistic supplements/medications, immunomodulators, IV nutrients, ozone, UVBI, and/or HBOT and I have no doubt that many people could make complete recoveries given that there are many stories with antivirals and immunomodulators alone. A good combined treatment protocol is more than most people ever do though all at the same time