Input on Treatment Protocol

Swim15

Senior Member
Messages
369
So no CVB then? Did you test for Echovirus as well?

Can I ask what your HHV-6 and EBV titers were?

I had one echovirus pop, EV1 I believe, but the titer was 1:40 so not a likely culprit.

HHV6 was 1:40 and EBV...can’t remember off the top of my head but it wasn’t all that high. May get that one retested though.

So right now there are no obvious viral triggers. Sort of at a loss with where to go but I’m going to get started on HBOT and test some additional titers and check for CCI and autoantibodies...think those are the next on my list
 

Learner1

Senior Member
Messages
6,293
Location
Pacific Northwest
EBV is not one number. The viral titers are a set of numbers that are usually interpreted incorrectly. A PCR test maybe useful in finding it if titers do not. It might also be wise to see if your immune system is working properly, and is creating antibody titers correctly. Mine wasn't, and my EBV got missed for a long time, spawning two different autoimmune problems that have caused all kinds of havoc.
 

Swim15

Senior Member
Messages
369
EBV is not one number. The viral titers are a set of numbers that are usually interpreted incorrectly. A PCR test maybe useful in finding it if titers do not. It might also be wise to see if your immune system is working properly, and is creating antibody titers correctly. Mine wasn't, and my EBV got missed for a long time, spawning two different autoimmune problems that have caused all kinds of havoc.

I believe you said this was in relation to total immunoglobulins your body was making?

I went back and found a copy on my phone and these are the numbers -

EBV viral capsid AG (VCA) AB IgM <36 U/mL
• this one looks negative

EBV viral capsid AG (VCA) AB IgG 128 U/mL
• this one is flagged as high

EBV nuclear AG (EBNA) AB IgG 26.6 U/mL
• this one is marked as high as well

Attached are the lab results for EBV that I currently have. Can order more anytime and will do that as soon as I’m home from traveling

Remind me again what the other tests were? Compiling yet another list for my doctor
 

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Learner1

Senior Member
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6,293
Location
Pacific Northwest
More testing would likely be useful. These papers explain why.
 

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  • EBV diagnosis still challenging.pdf
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  • serological EBV diagnosis.pdf
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  • EBV chronic infections.pdf
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  • EBV and autoimmune disease.pdf
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  • Lerner-antiviral-herpesvirus CFS.pdf
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sometexan84

Senior Member
Messages
1,195
As for EBV, I'm still planning on doing the full analysis. But EA is my main focus.

Aside from EBV, there are other numbers I'm following closely... my enterovirus infections, double checking on my C. Pneumoniae w/ follow up labs to make sure no relapse occurs here, and prob eventually another check on HHV-6 even though my titers were very low in the past.

I'd like to get some genetic sequencing done at some point as well.

Honestly, there is one big overall number I'm looking at more than everything, and that's my Complement, Total (CH50). When my results for this finally come back normal, I'll feel confident that my immune activation and inflammation are normalized, for all infections.
 

mrmichaelfreedmen

Senior Member
Messages
152
Location
Australia
Unfortunately there is no evidence that your treatment protocol will treat your ME/CFS. If anti-virals "work" for you, then it is by a different mechanism than killing viruses. This was pointed out by Naviaux--you can search this forum or his website for this mechanism. Typically antivirals will work for a while and then stop working.

About the only thing that there is some evidence for treating ME/CFS is cyclophosphamide (phase II) https://forums.phoenixrising.me/thr...ase-ii-study-rekeland-fluge-mella-2020.80066/

That's probably because the underlying immune imbalance is never corrected by these antivirals.