Please help convert EBV number to a titer number

[SuzieSam]

This is my test result:
EBV-VCA IgG is 3.27 HIGH

But I have no idea how to convert an index number like 3.27 to a titer number like 1:640

"Dr Jose Montoya considers EBV a problem in ME/CFS when EBV-EA is 1:160 or more, and an EBV-VCA IgG is 1:640 or more to be high. Reference: "

Can anybody help? My EBV-EA wasn't tested. Should I ask for that? Thank you

 

[Jonathan Edwards]

This is my test result:
EBV-VCA IgG is 3.27 HIGH

But I have no idea how to convert an index number like 3.27 to a titer number like 1:640

"Dr Jose Montoya considers EBV a problem in ME/CFS when EBV-EA is 1:160 or more, and an EBV-VCA IgG is 1:640 or more to be high. Reference: "

Can anybody help? My EBV-EA wasn't tested. Should I ask for that? Thank you

There is no conversion factor. These are different sorts of scales. Each lab will have a different scale and reference range. Labs may know how their tests compare with other labs but that would need to come from the lab involved I think.

 

[SuzieSam]

Thanks @Jonathan Edwards. I muffed it up - I don't know where I got that number from its wrong. This is the right one, with the range.

EBV IgG-EBNA result is 114.

POSITIVE: >=20
BORDERLINE: 5-20

My GP is useless. I'll never find out how this compares to ME doctors' ranges. In your experience, is it worth pursuing EBV anti viral treatment for high titres?

 

[Jonathan Edwards]

Thanks @Jonathan Edwards. I muffed it up - I don't know where I got that number from its wrong. This is the right one, with the range.

EBV IgG-EBNA result is 114.

POSITIVE: >=20
BORDERLINE: 5-20

My GP is useless. I'll never find out how this compares to ME doctors' ranges. In your experience, is it worth pursuing EBV anti viral treatment for high titres?

I don't think there is any point trying to compare this with the scale from another lab. It is seems fairly clear that the level is positive. But that simply means that you have some time in the past come across EBV, like 95% of people, and have immunity to it. Being negative would be quite a surprise.

I would not personally go too much on "ME doctors' ranges". As far as we know at present EBV antibody levels tell you nothing about the cause or prognosis for ME. A sudden rise in antibody level at the time of an illness that occurred at the start of ME would suggest that EBV was the trigger in that case but a positive titre later on tells us nothing as far as I know. And we have no reliable evidence for anti-viral therapy being of any benefit. Within the research community there is no general belief that persistent viral infection is relevant.

 

[Kati]

I don't think there is any point trying to compare this with the scale from another lab. It is seems fairly clear that the level is positive. But that simply means that you have some time in the past come across EBV, like 95% of people, and have immunity to it. Being negative would be quite a surprise.

I would not personally go too much on "ME doctors' ranges". As far as we know at present EBV antibody levels tell you nothing about the cause or prognosis for ME. A sudden rise in antibody level at the time of an illness that occurred at the start of ME would suggest that EBV was the trigger in that case but a positive titre later on tells us nothing as far as I know. And we have no reliable evidence for anti-viral therapy being of any benefit. Within the research community there is no general belief that persistent viral infection is relevant.

From what I understand from Naviaux et all, mitochondria is involved in immune signalling on top of being responsible for producing energy. Whatever smoke signal (if you will) the mitochondria is sending to immune cells, it affects the immune system, somehow. Considering that over the years from our experts, there is consistent understanding that patients with ME are in a state of chronic immune activation, with low NK cell function, one can only wonder about the impact on the status of the viruses, amongst other things.

As usual, more research is needed. Patients will continue to look for markers of illness which will prove they indeed are sick and that it's not in their heads. Where I am the medical system is still not acknowledging this illness, and patients are disbelieved, thought to be faking, or thought to have a psych illness.

We need biomarkers.

 

[SuzieSam]

@Jonathan Edwards thanks. So I'd need the tests that show reactivated infection. My brain just isn't working at all.

 

[junkcrap50]

You may want to look into Dr. Martin Lerner's research and writings. He closely studied EBV & CFS and had success in giving antivirals.

My infectious disease doctor also looked at my EBV IgG #'s and concluded that because my #s were so large, I had a ongoing active EBV infection. My HHV6 #s were positive and fairly above the normal range, but he said it was inconclusive whether or not that mean previous exposure or active infection. So, I imagine the "range" for active EBV depends on doctors' clinical experience and whatever lab/ranges they use normally. To me, 116 is kinda high above normal, but I could easily imagine people having #s as high as 300+. Kind of hard to tell for you.

 

[Hip]

So I'd need the tests that show reactivated infection. My brain just isn't working at all.

It should indicate on your lab test results whether the infection is active/reactivated or a dormant/past/latent infection.

If it is a chronic active infection, Dr Lerner's study suggests that Valtrex taken for around 2 years can bring major improvements to ME/CFS. See this post. I would not have thought you are going to get any benefits if you take Valtrex for only a short period, though.

 

[Jonathan Edwards]

@Jonathan Edwards thanks. So I'd need the tests that show reactivated infection. My brain just isn't working at all.

As far as I am aware there is no reliable evidence for reactivated or persistent EBV infection being relevant to ME. I know it has been a popular theory but when people like Ian Lipkin have looked nothing came to light. Antibody tests of the sort you mention are not designed to test for reactivated infection. Evidence for that would come from clinical signs and symptoms or cultures/PCR.

To my knowledge we do not have reliable evidence for anti-viral lie Valtrex being relevant either. These things have to be tested in adequately controlled trials.

 

[Valentijn]

Being negative would be quite a surprise.

I'm negative

 

[SuzieSam]

@junkcrap50 that's the problem - it could well be a perfectly normal level. Dr Lerner's work is what got me interested in this, thanks!

@Hip my lab results are rubbish - bloody GP. Not going to get anything usable. I'll have to go see KDM.

@Jonathan Edwards if there's no proof, then how is the late Dr A Martin Lerner's success explained? I read an article about Rituximab disrupting Lipid rafts, and the author hypothesised that maybe antivirals and antimicrobials have the same mode of action in ME patients. That it's nothing to do with defeating the infection.

http://www.meaction.net/2016/08/30/naviauxs-metabolism-paper-is-about

 

[Jonathan Edwards]

[USER=11588]@Jonathan Edwards if there's no proof, then how is the late Dr A Martin Lerner's success explained? I read an article about Rituximab disrupting Lipid rafts, and the author hypothesised that maybe antivirals and antimicrobials have the same mode of action in ME patients. That it's nothing to do with defeating the infection.[/USER]

It depends on what you mean by Dr Lerner's success. If you mean that we have clear evidence that his treatment strategy was effective, I do not think we do. If you mean that he was loved as a physician who tried to help patients and some of his patients got better then I guess maybe for the reason that such physicians were loved for two thousand years despite mostly having no effective treatments.

The fact that rituximab binds to CD20 in lipid rafts is irrelevant to what antivirals might do. Rituximab binds to CD20 and kills the B cell. It can do that via complement, ADCC or apoptosis and it does not really matter which. Antivirals and antimicrobials do not kill B cells. Even if they interfere with lipid rafts in other cells I cannot see what that has to do with killing B cells. You might as well say that both rituximab and antivirals dissolve in water or that strychnine and vitamin C dissolve in water. I cannot see a connection.

 

[SuzieSam]

Um, so you think that it was the placebo effect, with Dr Lerner? I'm wondering whether the same is true of Professor de Meirleir with the Chronic Lyme diagnoses... I hate the thought of taking enormous doses of antibiotics and destroying my gut microbiome.

Thanks for clearing up the lipid raft idea.

I'm at a loss here. Are people actually improving or is it that they're so relieved to be under the care of a doctor who is taking them seriously that the placebo effect works wonders?

 

[Hip]

I think what Professor Jonathan Edwards means by evidence is evidence of the highest standard, which I think would be phase III clinical trials. That I believe is the sort of evidence required before the UK NHS will consider allowing the routine prescription a drug or therapy.

However, there are also lower standards of evidence, such as the single study by Dr Lerner on Valtrex and/or Valcyte for Herpesviridae-associated ME/CFS, which followed 142 ME/CFS patients, for up to six years in some cases.

This evidence would not be accepted by the NHS, but as a patient you may feel that there is enough evidence there for you to give it a try.

If you look at Table 3 (copied below) from the Lerner study, you see how the average Energy Index Point Score (EIPS) of the antiviral-treated patients improved slowly over the years. The table shows the figures at three month intervals, so the row that I have highlighted in green shows the improvement in the EIPS (mean) after two years.

Table 3. Improvements in Energy Index Point Score over
time for ME/CFS patients given Valtrex and/or Valcyte

You can see that on average, Dr Lerner's patients started with an EIPS (mean) of just over 4, and two years later, on average they achieved a score of just over 6. So that is a two point increase over 2 years.

Note that on the EIPS:
Level 4 = Out of bed sitting, standing, walking 4 - 6 hours per day (the rest of the day in bed).

Level 6 = Daily naps in bed, may maintain a 40 hour sedentary work week plus light, limited housekeeping and/or social activities.

Dr Lerner found that 75% of the patients he treated increased their Energy Index Point Score by at least 1 point. So most patients do have some response.

When the patient only had EBV infections, they were treated with Valtrex (or Famvir) 1,000 mg every six hours.

If the patient had HHV-6 or cytomegalovirus, they were give Valcyte 450 mg x 3 daily.

What not very clear in Dr Lerner's study is the relative efficacy of antiviral treatment for EBV-associated ME/CFS using Valtrex (or Famvir), compared to the efficacy of antiviral treatment for HHV-6- or cytomegalovirus-associated ME/CFS using Valcyte. This is because Lerner combines all his patients who have one or more of these 3 Herpesviridae infections into a single group, so in his data you cannot focus solely on for example the efficacy of Valtrex for EBV-associated ME/CFS.



Note: the fact that this study showed ME/CFS patients improving on antivirals does not prove that ME/CFS is necessarily a viral disease. The viruses involved may simply be exacerbating the pathophysiology of ME/CFS, which may well be an autoimmune pathophysiology.

 

[Jonathan Edwards]

I think what Professor Jonathan Edwards means by evidence is evidence of the highest standard, which I think would be phase III clinical trials. .

No, Hip, what I mean is evidence that an intelligent person, aware of all the pitfalls of gathering evidence, would consider convincing. It has nothing to do with phase III trials. A phase I trial would do if convincing. It has nothing to do with the NHS, which is completely irrelevant to whether or not evidence looks convincing. It is the same level of evidence you might take into account in purchasing a house or deciding whether a school is a good place to send a child. You consider all the reasons why the evidence presented might or might not be reliable and make a judgment.

 

[SuzieSam]

Thank you, @Hip for taking the time to present this information so clearly to me. (My mind is getting more addled by the day, and I'm hoping it's simply my under-treated thyroid that's lowering my IQ and slowing my comprehension).

I can see why Prof Edwards, doesn't consider this reliable evidence, it doesn't meet any kind of standard for scientific testing. But I can see why a lot of us would take a punt on it, in hopes of moving up a rung or two of activity levels. Forget rigorous science. We seek hope anywhere.

To a healthy person a 2 year plan of taking anti-virals on the off chance it might get us out of bed, or out of the house, would seem daft. But nothing ventured...

 

[Rlman]

I'm negative

me too. there's another thread on PR of EBV igg nuclear ea negative ppl too