Help with CMV treatment

[Wonkmonk]

Interesting that your doc says high IgG titers mean something. Labs and my docs all ignore them.

I have the following titers:

HSV-1 IgG 1:32,000
HSV-2 negative

VZV IgG 1:2,800

EBV IgG 1:128
EBV EA antibodies 1:32
EBV EA early antigen diffuse: negative

HHV-6 IgG 1:32

CMV negative

IgM negative for all viruses

I am wondering where the real problem lies and especially if the super-high HSV-1 (measured 2 times identically 6 months apart, despite high-dose Valacyclovir) means anything.

The only thing that seems safe to say is that HHV-6 isn't the culprit.

Anti-herpes meds helped me a lot (Valacyclovir, Famciclovir and Brivudine all were effective), but I always thought I am shooting at EBV, because I have positive EBV EA antibodies. But perhaps the HSV-1 or the VZV is the real problem. In studies (both in vitro and in vivo) all three drugs are effective against all three viruses.

Btw, does anyone know what the difference is between EBV EA early antibodies and EBV EA early antigen diffuse?

Last time I tested, the former was positive, but low (1:32), the latter was negative.

 

[CFSTheBear]

YES!

My CFS doc looked at the labs several other docs had dismissed as I didn't have any IgM and said, "I know what we were taught in medical school, but, with these high IgG titers, you have these infections even when they said you didn't"

Thanks @Learner1 .

Out of the list you provided, are any able to get over the counter? Cost and lack of being able to access prescriptions here is a little bit of a consideration.

 

[Learner1]

Interesting that your doc says high IgG titers mean something. Labs and my docs all ignore them.

I have the following titers:

HSV-1 IgG 1:32,000
HSV-2 negative

VZV IgG 1:2,800

EBV IgG 1:128
EBV EA antibodies 1:32
EBV EA early antigen diffuse: negative

HHV-6 IgG 1:32

CMV negative

IgM negative for all viruses

I am wondering where the real problem lies and especially if the super-high HSV-1 (measured 2 times identically 6 months apart, despite high-dose Valacyclovir) means anything.

The only thing that seems safe to say is that HHV-6 isn't the culprit.

Anti-herpes meds helped me a lot (Valacyclovir, Famciclovir and Brivudine all were effective), but I always thought I am shooting at EBV, because I have positive EBV EA antibodies. But perhaps the HSV-1 or the VZV is the real problem. In studies (both in vitro and in vivo) all three drugs are effective against all three viruses.

Btw, does anyone know what the difference is between EBV EA early antibodies and EBV EA early antigen diffuse?

Last time I tested, the former was positive, but low (1:32), the latter was negative.

My EBV was found with both a PCR and a VCA test after the tests you had were 0 multiple times. It is known to hide in some of us.

I agree with the rest of your analysis. You could try ozone, HBOT, high dose IV vitamin C, artesunate, mushrooms, and botanicals, as well as a different antiviral.

 

[Learner1]

Thanks @Learner1 .

Out of the list you provided, are any able to get over the counter? Cost and lack of being able to access prescriptions here is a little bit of a consideration.

You're in the UK? Not sure. Maybe @Hip can answer. I think you have private docs and there are private labs for some things. In the US they're easy enough tests to get. (We just have to pay for them...)

 

[Hip]

Thanks @Hip. My CMV testing was done at TDL as well...the only comment that's on the test is "evidence of previous CMV infection". I may be misunderstanding something here as my grasp of this stuff is very simplistic, but given the reactive parameter is > = 6 au/ml and mine reads 219.8, is this worth pursuing even with the lab comment being nonspecific about reactivation/recent infection?

If they have written "evidence of previous CMV infection", that suggests your infection is in a dormant state, being fully controlled and kept in check by your immune system.

You can also ask your GP to interpret the results for you; he should be able to tell you whether your infection is dormant or active.

 

[Wonkmonk]

I agree with the rest of your analysis. You could try ozone, HBOT, high dose IV vitamin C, artesunate, mushrooms, and botanicals, as well as a different antiviral.

So far the antivirals were remarkably effective, so I plan to continue with them for some time to see where it leads.

What I have been thinking about is: If it is EBV, I could try Rituximab, which kills the EBV reservoir B-cells. There are cases in which Rituximab cleared EBV infections entirely. So the plan would be to wipe out the B cells with Rituximab and then quickly start antivirals to stop the newly produced B-Cells from being reinfected. That should keep my body EBV free, at least theoretically.

So if it's EBV, that should kill it off entirely, or at least very close to it. Then my CFS should go into long-term remission.

At least that's the hope.

 

[Learner1]

Hmmm... that's not quite what I understood. I was under the impression we need to beat back the infections first, and then try Rituximab, if needed. There ARE risks to Rituximab.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2668229/#!po=4.36047

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4381260/

IVIG, antivirals, antibiotics, botanicals, and oxygen therapies can all help with Step 1.

 

[Wonkmonk]

I'm doing step 1 since January

 

[Natistar]

Interesting that your doc says high IgG titers mean something. Labs and my docs all ignore them.

I have the following titers:

HSV-1 IgG 1:32,000
HSV-2 negative

VZV IgG 1:2,800

EBV IgG 1:128
EBV EA antibodies 1:32
EBV EA early antigen diffuse: negative

HHV-6 IgG 1:32

CMV negative

IgM negative for all viruses

I am wondering where the real problem lies and especially if the super-high HSV-1 (measured 2 times identically 6 months apart, despite high-dose Valacyclovir) means anything.

The only thing that seems safe to say is that HHV-6 isn't the culprit.

Anti-herpes meds helped me a lot (Valacyclovir, Famciclovir and Brivudine all were effective), but I always thought I am shooting at EBV, because I have positive EBV EA antibodies. But perhaps the HSV-1 or the VZV is the real problem. In studies (both in vitro and in vivo) all three drugs are effective against all three viruses.

Btw, does anyone know what the difference is between EBV EA early antibodies and EBV EA early antigen diffuse?

Last time I tested, the former was positive, but low (1:32), the latter was negative.

Can you tell me your story with
Famciclovir? Was it terrible at first? Did you ever get cured with it?

 

[Wonkmonk]

I only took famvir for about a week. I took Valacyclovir for most of the time. There was a herx, but it was ok. It didn't get really bad at the beginning. Then I improved somewhat, but not too much.

 

[Natistar]

I only took famvir for about a week. I took Valacyclovir for most of the time. There was a herx, but it was ok. It didn't get really bad at the beginning. Then I improved somewhat, but not too much.

Why did you only take
Famciclovir for a week?

 

[Wonkmonk]

i had to substitute for valacyclovir bc with valacyclovir i had kidney damage and famvir is more gentle to the kidneys. sorry i can't write much at the moment, i have a needle in my hand because i am getting several iv antibiotics a day at the moment.

 

[Natistar]

i had to substitute for valacyclovir bc with valacyclovir i had kidney damage and famvir is more gentle to the kidneys. sorry i can't write much at the moment, i have a needle in my hand because i am getting several iv antibiotics a day at the moment.

I’m a little confused. If
Famciclovir is better for your kidneys why did you switch to valacyvlovir?

 

[Wonkmonk]

i started with val, then the kidneys went bad, therefore switched to fam for a week. later could restart val again.

 

[iamwhoiam]

Dr A Martin Lerner says that a diagnosis of cytomegalovirus infection is made by examining the CMV IgG antibody titer. Lerner says the IgM titer for cytomegalovirus is inaccurate and insensitive. Ref: 1

If you look at this roadmap of chronic fatigue syndrome / myalgic encephalomyelitis testing and treatment, I've included (whenever the information was available) the lab ranges for which ME/CFS specialists believe antiviral treatment might be useful.

Unfortunately in the case of cytomegalovirus, I could not find the threshold at which antiviral treatment is advised (and in any case, that threshold will be different for different labs). However, if on your lab report it states that your results are indicative of a past or latent cytomegalovirus infection, then treatment would likely not help.

But if it states that the results suggest a recent infection, active infection or reactivated infection, then possibly antiviral treatment might yield results.



The downside is that antiviral drugs for cytomegalovirus like Valcyte are expensive, and require regular liver monitoring.

COX-2 inhibitors can inhibit cytomegalovirus replication (ref: here), and propolis in is fact a potent COX-2 inhibitor, at least in vitro (see here), so possibly good doses of propolis might help.



Unfortunately in the UK, we don't have any commercial labs that I am aware of that can test for chronic coxsackievirus B and echovirus infection, arguably the two most important viruses to test for in ME/CFS. It is only a neutralization-type antibody blood test that is sensitive enough to reliable detect these viruses in chronic infection. In the US, ARUP Lab provides a micro-neutralization antibody test that can detect these viruses, but I don't know of any lab in the UK that has a neutralization test.

Coxsackievirus B and echovirus are important to test for, because there is a treatment that for some ME/CFS patients works very well to fight these viruses, namely oxymatrine.

It seems that the reference is not longer loading here and in your roadmap. Do you have an offline copy or another link?

 

[Hip]

It seems that the reference is not longer loading here and in your roadmap. Do you have an offline copy or another link?

The roadmap link is down because the Internet Archive is down temporarily (I believe it was hacked).

The same document can be found here.

 

[iamwhoiam]

The roadmap link is down because the Internet Archive is down temporarily (I believe it was hacked).

The same document can be found here.

Thanks! BTW, I appreciate all you do with that roadmap, have been a life saver! I got high hopes now working with my Dr.