Would it still make sense to look into antivirals for me?

Q

qwazy

Messages
6
Hey everyone,
I was wondering if a virus infection could still be a problem of mine?

My CFS started around 10 years ago with a chronic EBV/mono infection. During that time a doctor also prescribed antibiotics which totally destroyed my gut. The first year after the infection I was ~16h bed bound but got rid of the extreme fatigue and swollen lymph around the 1 year mark. I still had a million symptoms whereby many improved over the last 10 years by mainly working on my gut.

However, I am still not perfectly well. There is currently still "light":
  • MCAS (IBS, food intolerances, allergies, brain fog, sleep issues, ...),
  • orthostatic intolerance,
  • PEM (not always there and if present usually less than 24h).
Now I wonder if those things could still be present because of a viral infection in the body? Could I profit from an antiviral regiment? Are there any significant signs that could hint at it or is it more likely that directly working on the gut will resolve the issues?
 
Shanti1

Shanti1

Administrator
Messages
3,513
My thoughts are that if you still have gut symptoms it is important to continue to work on the gut, however, investigating EBV could also be helpful, especially if it was your initial trigger. PEM that is reminiscent of a viral infection, swollen lymph nodes, and sore throat may indicate viral involvement. While not a definitive test, you could do EBV antibody testing, an elevated IgMor early antigen *may* indicate active EBV. Or you could try valacyclovir and see if it helps. As far as antivirals go, it is one of the least toxic (https://forums.phoenixrising.me/thr...ve-mitochondrial-effects-of-antivirals.87498/)

Below is an example of antibody testing for EBV. The results are mine from 2019 and I did very well with valacyclovir. With EBV antibody testing you can miss latent infections or have false positives, so it needs to be taken in context.

1652568454450.png
 
Q

qwazy

Messages
6
Shanti1 said:
My thoughts are that if you still have gut symptoms it is important to continue to work on the gut, however, investigating EBV could also be helpful, especially if it was your initial trigger. PEM that is reminiscent of a viral infection, swollen lymph nodes, and sore throat may indicate viral involvement. While not a definitive test, you could do EBV antibody testing, an elevated IgMor early antigen *may* indicate active EBV. Or you could try valacyclovir and see if it helps. As far as antivirals go, it is one of the least toxic (https://forums.phoenixrising.me/thr...ve-mitochondrial-effects-of-antivirals.87498/)

Below is an example of antibody testing for EBV. The results are mine from 2019 and I did very well with valacyclovir. With EBV antibody testing you can miss latent infections or have false positives, so it needs to be taken in context.

View attachment 47692
Click to expand...
Thx, I heard that saliva testing is more accurate. Do you know anything about that? Otherwise, I might just give antivirals a run as a "provocation".
 
Shanti1

Shanti1

Administrator
Messages
3,513
I'm guessing you are considering a PCR salivary test to see if the actual virus is present in saliva?

We have had people on this forum have the EBV show up on PCR and not on an antibody test, presumably because of a suppressed immune response. Other people report that PCR was always negative but the antibody test indicated reactivated EBV.

Unfortunately, there is no definitive test to know if active EBV is contributing to our symptoms. This may be because EBV can exist in what is termed an "abortive lytic infection", which basically means that it can still make viral proteins that contribute to symptoms but doesn't actually replicate and go through viral shedding.

What makes it even trickier is that 95% of the population has EBV and healthy people can go through a cycle of periodic salivary viral EBV shedding, so a positive salivary PCR test isn't a definitive for a problem either. I think a positive blood EBV PCR test might be more indicative of an issue, but most people with ME/CFS would probably test negative for blood PCR.

It doesn't hurt to do all these tests and factor them into a decision, but if you have access to valacyclovir, you can also just give it a try. It is important to note that it is common to feel worse before feeling better when starting an antiviral. When I started valacyclovir, some aspects of my ME/CFS initially got worse, but my lymph node swelling went down the first week, so I knew it was helping me.
 
Q

qwazy

Messages
6
I will just trial some antivirals and see what happens. That is more cost effective and less of a problem than the diagnostic stuff.
 
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