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Help with CMV treatment

CFSTheBear

Senior Member
Messages
166
Hi there,

Currently I'm on acyclovir and some antibiotics for some viruses I've tested positively for, as well as mycoplasma pneumoniae.

My question is: in the same set of tests that elicited the above treatment, I also had an iGg of 200 for CMV, iGm negative.

As there's so much conflicting information around different lab ranges (the one above was done in central London), my question is twofold:

1. Are the lab results here a prompt to pursuing some treatment for CMV?

2. Are there any supplement/dietary alternatives that would be effective here, rather than a prescription antiviral? I'm on my other antiviruals for at least the next 4 months, and reluctant to try Valcyte/Famvir, so if anyone could help on this regard that would be great. I have propolis in my cabinet, which I think I read once may help with this sort of thing, but no idea if that's true.

Any help appreciated, cheers
 

Hip

Senior Member
Messages
17,824
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.
 
Last edited:

CFSTheBear

Senior Member
Messages
166
I understand being reluctant to try valcyte by why famvir?? Its got a better safety profile and more effective than acyclovir.
Ah - what I should have really said is reluctant to try Valcyte, but also unlikely to get a prescription in my country for Famvir.
 

Wonkmonk

Senior Member
Messages
1,006
Location
Germany
@Hip Thanks a lot for the lab ranges document. Very useful!

I think a threshold for elevated cytomegalovirus might be included in this Lerner et al. study:

https://www.ncbi.nlm.nih.gov/pubmed/12582420

It reads "the control group (nine CFS patients) had, additionally, high titers of serum antibodies (IgG) to conformational structural antigens of human cytomegalovirus."

So I would suspect he defines what high titers are, and probably that would be a threshold for treatment.

Sadly, I can't access the full text.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
2. Are there any supplement/dietary alternatives that would be effective here, rather than a prescription antiviral? I'm on my other antiviruals for at least the next 4 months, and reluctant to try Valcyte/Famvir, so if anyone could help on this regard that would be great. I have propolis in my cabinet, which I think I read once may help with this sort of thing, but no idea if that's true.

Any help appreciated, cheers
I have CMV and mycoplasma and tried a natural approach first. It helped a fair amount, but I have 4 other infections and low immunoglobulin, so I needed to bring in the big guns.

What we tried first was:

- IV artesunate and high dose vitamin C
- BioPure Nexus artemisinin suppositories
- 2g oral vitamin C, twice daily
- 500mg berberine
- 15 drops Nutramedix Banderol
- 15 drops Nutamedix Samento
- 1 scoop Allergy Research NT Factor
- EDTA/bismuth/alpha lipoic acid biofilms buster or lumbrokinase
- UVBI and ozone

Now I'm doing IVIG, IV antibiotics, and Valcyte, working on my gut, and having my liver monitored.:eek: And doing hyperbaric oxygen therapy.

There are multiple approaches. Depends on how sick you are, as I know others who've gotten better both ways.
 

Hip

Senior Member
Messages
17,824
Will this work? It has some titers from Lerner.

Thanks @Learner1, though I am not sure if that document helps. What we really need is a statement by Dr Lerner (or by Dr Dan Peterson, who also treats a lot of cytomegalovirus infections in ME/CFS) saying what titers of CMV he considers high enough to treat with antivirals such as Valcyte, and also what lab was used for testing (because I understand that you cannot convert one's lab's titers into another's).
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Thanks @Learner1, though I am not sure if that document helps. What we really need is a statement by Dr Lerner (or by Dr Dan Peterson, who also treats a lot of cytomegalovirus infections in ME/CFS) saying what titers of CMV he considers high enough to treat with antivirals such as Valcyte, and also what lab was used for testing (because I understand that you cannot convert one's lab's titers into another's).
How about this one?
 

Attachments

  • Lerner ME CFS Treatment Guide.pdf
    701.7 KB · Views: 17

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
It did show what lab he used.

Both my expert CFS doc and my primary doc use LabCorp, a national lab in the US. Here's what my report said:

Cytomegalovirus (CMV) Ab, IgG
>10.00
Ref Range: 0.00-0.59

Negative <0.60
Equivocal 0.60 - 0.69
Positive >0.69

Other titers are reported as 1:512, etc. but not this one.
 

Hip

Senior Member
Messages
17,824
Other titers are reported as 1:512, etc. but not this one.

Yes, some labs report antibody results as an index number, as your lab did. My own cytomegalovirus results from some years back were also reported results as an index; my results were:

Cytomegalovirus IgG Positive: 7.0 IU/ml (Pos = > 0.4)

This was from TDL Lab in London. So since I was quite high above the 0.4 threshold, this I believe represents an active infection.


But more often you see antibody titers represented by numbers such as:

1:10 ... 1:20 ... 1:40 ... 1:80 ... 1:160 ... 1:320 ... 1:640 ... 1:1280 ... etc

Or:
1:8 ... 1:16 ... 1:32 ... 1:64 ... 1:128 ... 1:256 ... 1:512 ... 1:1024 ... etc
 

CFSTheBear

Senior Member
Messages
166
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 document, 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.


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?
 

CFSTheBear

Senior Member
Messages
166
I have CMV and mycoplasma and tried a natural approach first. It helped a fair amount, but I have 4 other infections and low immunoglobulin, so I needed to bring in the big guns.

What we tried first was:

- IV artesunate and high dose vitamin C
- BioPure Nexus artemisinin suppositories
- 2g oral vitamin C, twice daily
- 500mg berberine
- 15 drops Nutramedix Banderol
- 15 drops Nutamedix Samento
- 1 scoop Allergy Research NT Factor
- EDTA/bismuth/alpha lipoic acid biofilms buster or lumbrokinase
- UVBI and ozone

Now I'm doing IVIG, IV antibiotics, and Valcyte, working on my gut, and having my liver monitored.:eek: And doing hyperbaric oxygen therapy.

There are multiple approaches. Depends on how sick you are, as I know others who've gotten better both ways.

Thank you for this, really helpful :)
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
is this worth pursuing even with the lab comment being nonspecific about reactivation/recent infection?
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"