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Viral titer levels change in months

Discussion in 'General ME/CFS Discussion' started by pcmenten, Jul 18, 2017.

  1. pcmenten

    pcmenten

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    Vancouver, WA
    I have read in more than one place that the levels of viral titers, EBV NA, for example, move slowly. I don't know what qualifies as moving slowly but I can report that my titers move significantly in months. And from what I have experienced, they are reflective of my symptoms at the time of measurement.

    I'll have to post examples of measurements to illustrate the point I'm making, but the idea that titers aren't diagnostic of your current state of health is bullsh!t. Arrant bullsh!t.

    Paul
     
    GreyOwl and Learner1 like this.
  2. kelly8

    kelly8

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    I've been trying to get my Dr to order some titer tests and thus far she has absolutely refused. I keep getting flare ups and wonder if a virus is reactivating. They come totally out of the blue but knock me on my buns. Can you post the results you got with your symptom relations? Does anyone have advice on how to get a Dr to order these?
     
  3. Learner1

    Learner1 Professional Patient

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    My values have changed significantly up and down over the past 18 months as I've tried different treatments. And I had a hidden case of EBV that was finally found after multiple negative tests - my immune system was too dysfunctional to react properly.

    Get a competent or a cooperative doctor. We're too sick to fight with doctors...

    And have your immunoglobulins tested, with subclasses... (It's justifying my treatment with my insurance company...)
     
  4. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    What I think people need.Learner1, is an honest doctor. Unfortunately, there seems to be an inverse relation between that and physicians playing around with antibody titres as far s I can see. You have to remember that there is something called the anamnestic response. That means that when your immune system is responding to something it may produce more antibodies tall sorts of things it has met in the past. The changes in those levels has nothing to do with the things met in the past being relevant to the state of health.

    The idea that antibody levels to viruses can be used to monitor ill health due to the virus just makes no immunological sense. I spent my life studying the antibody response. It does not work like that. High titres are a sign of immunity, not high levels of antigen.

    Nobody should be fighting with doctors. The problem is that 'cooperative' doctors are mostly people who are happy to take e money and tell stories.
     
  5. Learner1

    Learner1 Professional Patient

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    I am seeing a competent immunological expert who is up on the latest research and have greatly benefited from lab testing, which has informed my treatment, and which is helping.

    What was NOT helpful was the parade of MDs who took my money and refused to do testing and suggested CBT and GET. It delayed my getting proper treatment by a year.

    We don't know all the answers. No one does.
    There seem to be a number of different interpretations of the same labs by noted CFS experts with published work.

    As a patient, I find it far more helpful to have lab testing that shows something and then see what the doctors will do with it.

    On my journey, I've been amazed at hearing remarkable, brilliant doctors having the humility to say "I don't know" or "We were taught this in medical school, but now we've learned that..." or "this new research has really changed our view of" or "I used to practice this way, but then I learned..." or "it works that way for many patients, but your situation is different and surprising because..." I've been far less impressed by doctors who are dogmatic, stick to narrow and static viewpoints, treat me like a moron, and think they know all the answers - they simply don't.

    From my experience, I not only have the titers on the labs but also have other symptoms and labs suggesting that the titers are actually valid. I doubted them for a long time, due to listening to folks with your viewpoint, but having now seen multiple very competent doctors saying the same things as I'd read elsewhere on my own, I tend to believe them.

    It sure beats psychotherapy as an answer due to a lack of data to base decisions on.
     
    Last edited: Jul 19, 2017
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  6. herpesbaby

    herpesbaby Senior Member

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    @Jonathan Edwards How should we monitor our condition then? What tests to take, if not IgG & IgM?
     
  7. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Nobody knows of any tests that monitor ME/CFS. That is the problem. Measuring IgM and IgG will tell you nothing.
     
  8. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I absolutely agree but I amassing any competent immunologist will say things like that rather than being dogmatic.
    The problem is that a lot of cowboys are very good at saying exactly those things and then playing around with tests that mean nothing.

    As far as I am aware there are no tests at present that can usefully help assess what is going in ME/CFS. "We don't know" is the honest one.
     
    BurnA likes this.
  9. herpesbaby

    herpesbaby Senior Member

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    What if I don't have cfsme.
    On April 2nd I had sex with a new partner.
    From April 17th I've started having low grade fever dizziness headache and fatigue.
    On may 21st I've noticed a bump down there. Got it checked. Doc said it's herpes and I'm sick because it's a first outbreak.
    I've started taking acyclovir from may 22nd. On June 26th switched to valtrex 3 grams a day as per Lerner's protocol. I was gonna monitor my titres with igg.
    Doc said I'm having a pvfs. Doc is also against any blood tests. She prescribed immunoglobulin and said to wait it out.

    Do I even need to continue with valtrex ?
    I'm still feeling crappy and have even pink eye now.
     
  10. herpesbaby

    herpesbaby Senior Member

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    I also wake up with headache dizzy. Feel lightheaded all the time as if I'm drunk. Get tired easily. My eyelids droop. And this headache won't go away.
     
  11. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I cannot give you personal advice but I do not think viral antibody titres are of any relevance whether or not you have CFS/ME.
     
    herpesbaby likes this.
  12. halcyon

    halcyon Senior Member

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    Is this the correct name for this response? I have seen what you are describing in the last sentence described in papers but I don't think they used this name. From what I'm reading, anamnestic response simply describes the ability for memory B and T cells to rapidly clonally expand once reexposed to their recognized antigen. But this requires the presence of specific antigen. I assume the response you are talking about is due to bystander exposure to certain cytokines that encourage clonal expansion without TCR/BCR activation or something similar.

    I don't think this is what is occurring in ME patients. Researchers such as Prof. James Mowbray found that they could break their cohort into subgroups where viral titers didn't overlap, i.e. he had one subgroup with elevated EBV EA titers, one subgroup with elevated enterovirus titers. He had no patients who ever had both at the same time.

    On a personal level, this doesn't wash either. I've had neutralizing antibody testing for enteroviruses yearly over the last three years. I show a consistent neutralizing effect for numerous serotypes at low concentrations, consistent with past exposure and immunity. I show neutralizing effect for one single serotype at very high concentrations, consistently for 3 years, at a level that is determined by the (nationally reputable) lab to be clinically consistent with active infection. I don't see why my body would waste the energy spinning out B cell clones constantly to produce neutralizing antibodies for antigens that I'm not constantly being exposed to. I know that different antigens and virus serotypes can probably provoke a different strength of antibody response and neutralizing effect, but we're talking like 4-5+ reciprocal dilutions here. It would be one thing if it didn't fit with the other evidence, but it does. Numerous studies have consistently shown the chronic presence of enterovirus antigen in ME patients. It makes total sense that we would be producing high concentrations of antibody to single serotypes. The virus is still present.
     

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