Does anyone here NOT have EBV, HHV-6, or CMV?

[sometexan84]

I'm curious to know if anyone in this forum does not have an active infection for either EBV, CMV, or HHV-6?

 

[EddieB]

I have sky high tests for past infection (EBV), but none for active. I think that’s the case for a lot of us.

 

[Wishful]

I haven't bothered to be tested for all of those (that I know of), but I never had a test that showed an active infection.

 

[sometexan84]

Yea, there's no way my question will reveal anything.

Not enough people know what they have. @EddieB Just for fun, would you mind sharing your EBV labs?

 

[morgan_25]

I'm curious to know if anyone in this forum does not have an active infection for either EBV, CMV, or HHV-6?

I have current active EBV, no CMV, and possible HHV-6. I have multiple symptoms for the HHV-6 but have no actually been tested for it yet. I actually had a CRAZY experience with my last EBV test. I had mono/EBV when I was 14. I got tested for it in April or May this year, I tested positive for an active infection, as well as the one that tells you if you’ve had it recently, but I tested negative for past infections, so no antibodies. My doctor at the time mentioned the possibility of my primary infection when I was 14 never actually went away. I don’t know how likely that is, but I am currently 25. I’ve had CFS since I got mono when I was 14.

 

[sometexan84]

@morgan_25 So, was your IgM positive?

 

[morgan_25]

@morgan_25 So, was your IgM positive?

Yes. IgG is positive and so is IgM. It was the nuclear antigen IgG that was negative.

 

[sometexan84]

Yes. IgG is positive and so is IgM. It was the nuclear antigen IgG that was negative.

Wow. Yea, that's definitely Acute Primary infection. So you've just had that initial infection brewing the whole time. No wonder you've had CFS from the initial mono to now.

I'd wager you have a major immune deficiency.

 

[morgan_25]

Wow. Yea, that's definitely Acute Primary infection. So you've just had that initial infection brewing the whole time. No wonder you've had CFS from the initial mono to now.

I'd wager you have a major immune deficiency.

Ohhhhhh yeahhh I am significantly immunodeficient, unfortunately. I haven’t been able to really pursue any of this though because there are only 13 ME/CFS specialist in the US. There just happens to be one close by, but insurance doesn’t cover it, but hopefully one day I will be able to seek help there. And when I had that test done the only thing my doctor could think of is that it just never went away. I got tested for it again because around hat time my health spiraled out of control and ended up having to quit my job, but unfortunately I have received more help and education through my own research and talking to people who have this disease, than from my past doctors.

 

[sometexan84]

And when I had that test done the only thing my doctor could think of is that it just never went away

Yea, that would be false. Most doctors won't really know what it means.

I would definitely check out Dr. Lerner's EBV treatment with Valtrex (aka Valacyclovir). For the EBV.

But at some point, you'll want to learn more about that immunodeficiency. It must be something significant if your body couldn't take care of the initial EBV infection.

For EBV to thrive like that, you'd have to have significantly reduced cellular immunity. You might want to look into X-linked Lymphoproliferative (XLP) Syndromes 1 and 2. If you don't have that, then I'd look at other Primary Cellular Immunodeficiencies. If that checks out, maybe look into Secondary and Humoral deficiencies.

 

[EddieB]

@EddieB Just for fun, would you mind sharing your EBV labs?

Sure.

 

[sometexan84]

See, this is the problem. Some haven't been tested. And even those that HAVE been tested, don't know what to make of it.

@EddieB Dude. You very much have a very active EBV infection.

And the interpretation they put on the test is so confusing. That doesn't help anyone.

 

[EddieB]

@EddieB Dude. You very much have a very active EBV infection.

That’s what I’m starting to believe.

I’m currently going through some sort of reactivating, or at least it sure feels like it. I thought about trying to get a EBV PCR, but what’s the point? I already know something is wrong, the test may of may not show active, and the doctors won’t do anything anyway.

My immunologist has offed me valcyclovir, I’m considering giving it a try. Very controversial here, some say it worked, others say it can’t. Have you tried any antivirals?

 

[ljimbo423]

I thought about trying to get a EBV PCR, but what’s the point?

Haven't you already had a PCR test or 2 for EBV?

 

[sometexan84]

That’s what I’m starting to believe.

I’m currently going through some sort of reactivating, or at least it sure feels like it. I thought about trying to get a EBV PCR, but what’s the point? I already know something is wrong, the test may of may not show active, and the doctors won’t do anything anyway.

My immunologist has offed me valcyclovir, I’m considering giving it a try. Very controversial here, some say it worked, others say it can’t. Have you tried any antivirals?

I think it might be good for you to try Dr. Lerner's protocol and get on Valtrex. You may feel like complete shit after 4.5 - 6 weeks. If you do, this could mean that the drug is working. The worsening of symptoms could likely last over a week.

You could know the answer in 5 weeks time.

Your EBV is worse than mine. I started Valtrex 2.5 months ago. I got the herx-like reaction, felt really bad for 4-5 days. So you will probably need to understand going in that you might feel really really bad for like 2 weeks straight, based on your levels. And THIS is why many people stop taking it.

In fact, there are tons of people on this forum that I've read just stopped taking it because they couldn't handle it. Also the reason why so many people say "it did not work".

 

[EddieB]

Haven't you already had a PCR test or 2 for EBV?

Or 3 or 4, I’ve lost count. All negative.

But I’m beginning to question the value of an “active” test. The doctors make a big deal over them, “oh your test is negative, so your fine...”

 

[ljimbo423]

Or 3 or 4, I’ve lost count. All negative.

It's my understanding that if you have viral replication, as in a EBV re-activation, your PCR test would be positive. You could get a false negative but 3-4 false negatives is beyond comprehension.

 

[morgan_25]

Yea, that would be false. Most doctors won't really know what it means.

I would definitely check out Dr. Lerner's EBV treatment with Valtrex (aka Valacyclovir). For the EBV.

But at some point, you'll want to learn more about that immunodeficiency. It must be something significant if your body couldn't take care of the initial EBV infection.

For EBV to thrive like that, you'd have to have significantly reduced cellular immunity. You might want to look into X-linked Lymphoproliferative (XLP) Syndromes 1 and 2. If you don't have that, then I'd look at other Primary Cellular Immunodeficiencies. If that checks out, maybe look into Secondary and Humoral deficiencies.

Yeah absolutely! I don’t know what any of that is so I will look into it. Thanks!

 

[morgan_25]

Yeah absolutely! I don’t know what any of that is so I will look into it. Thanks!

Yea, that would be false. Most doctors won't really know what it means.

I would definitely check out Dr. Lerner's EBV treatment with Valtrex (aka Valacyclovir). For the EBV.

But at some point, you'll want to learn more about that immunodeficiency. It must be something significant if your body couldn't take care of the initial EBV infection.

For EBV to thrive like that, you'd have to have significantly reduced cellular immunity. You might want to look into X-linked Lymphoproliferative (XLP) Syndromes 1 and 2. If you don't have that, then I'd look at other Primary Cellular Immunodeficiencies. If that checks out, maybe look into Secondary and Humoral deficiencies.

And you’re saying that it could have been a false negative?

 

[morgan_25]

Or 3 or 4, I’ve lost count. All negative.

But I’m beginning to question the value of an “active” test. The doctors make a big deal over them, “oh your test is negative, so your fine...”

This is interesting because I had a PCR test done right after my EBV test showed I was positive for active EBV, but my PCR test came back negative as wel.