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Given Dr Lerner and Montoyas findings, why arent a subset of us getting treated now?

Discussion in 'Latest ME/CFS Research' started by snowathlete, Nov 3, 2011.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Makes it even more worth while to do a theraputic treatment trial and see how you respond, im thinking 3-6 months before you notice any benefits but obviously longer for substantial results.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I have just had an immunoglobulin sub classes test done and get results soon. Prevoius results showed my IGA were high and IGG and IGM just below the high range. I think when these test low is when they consider gammaglobulin therapy but have also read it helps if these are normaland u have active infections you need treated??

    cheers!!
  3. Hip

    Hip Senior Member

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    Regarding this loss of antibody response in CFS patients:

    It is interesting that CFS patients are often found low in uric acid. Could this explain the low levels of IgG? Uric acid levels are linked to antibody response. The reason that vaccine manufactures put aluminum in vaccines is because aluminum will ramp up uric acid, and uric acid will then ensure a strong antibody response, which is what you want when getting vaccinated for something. (Incidentally, I don't why the vaccine manufactures don't just put pure uric acid in the vaccines instead of aluminum, unless there is some technical reason why this does not work; it might make a safer vaccine).

    One way to boost you uric acid levels, by the way, is with inosine, which is a precursor to uric acid. Inosine's uric acid boosting effect might in part explain why some CFS patients benefit by this supplement (or by its close relative, Imunovir).


    I also wonder whether cerebrospinal fluid might still have antibodies present even if the there are no antibodies in the blood of CFS patients. Does anyone know much about cerebrospinal fluid antibody testing?


    Regarding antibody tests, PCR tests, and viral cultures:

    Can anyone throw some more light on when and why to choose antibody, PCR, or viral culture? These are the 3 test options I know.

    I understand that antibody testing is the only method that (normally) can tell both if a virus is present, and also can measure how active the virus is (the activity is reflected in the titers).

    I believe that the PCR will only give a YES/NO answer to whether a pathogen is present; but it cannot tell you how much of the pathogen is present, or how active it is. And I assume the same is true for viral cultures: it is just a YES/NO answer, not a quantitative measure like antibody titers; but I am not entirely sure on this.

    If we are to provide some guidelines for new CFS patients on what tests to take, there needs to be an explanation on the pros and cons of antibody vs PCR vs viral culture.

    Are there any other types of tests apart from these three? (I know DNA microarrays aka virochips will be available in the future, as another means of testing, but that may be years away).
  4. Hip

    Hip Senior Member

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  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    One of the links mentions cmv being a slow replicating virus and i guess ebv and hhv6 are also the same, this might be why antivirals have to be used for long periods of time as it would take longer for them to work on viruses that replicate slowly??
  6. Hip

    Hip Senior Member

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    Sorry I missed that question earlier. Yes, that's what the lab paperwork said. It said this:

    Cytomegalovirus IgG Positive 7.0 IU/ml (Pos = > 0.4)
    Suggest testing for specific CMV IgM to rule out recent infection.



    Also of interest: http://www.cdc.gov/cmv/clinical/lab-tests.html
  7. snowathlete

    snowathlete

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    why do we bother testing for antibodies, when the tests arent as good as PCR? Why dont we just test for PCR? Is it purely a cost issue?
  8. Tristen

    Tristen Senior Member

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    My doc goes straight for the PCR on the more elusive bugs. He didn't bother with Ab tests for CMV, HHV6&7, and a few others. The docs who do Ab testing on these bugs are just lacking the knowledge on the need for the more complex testing.
  9. Hip

    Hip Senior Member

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    In terms of detecting the chronic enterovirus infections associated with CFS, the Enterovirus Foundation says:

    Polymerase Chain Reaction (PCR) - The PCR test is not considered sensitive for chronic enteroviral infections. Since viruses are cleared quickly from the blood stream, the chance of finding viral gene or RNA in the blood by the PCR technique is low (ref: here).

    Although for acute infections, they say:

    Polymerase Chain Reaction (PCR) - This test is highly sensitive and specific for detecting enteroviral RNA in cerebral spinal fluid specimens, with a sensitivity of 100% and specificity of 97% (ref: here).

    In this respect, enterovirus testing is different to other viruses like herpesviruses. You are expecting a low level hard-to-detect "smoldering" enterovirus infection. Whereas with herpesviruses, it seems that low level inactive infections are not considered a concern, only the reactivated infections. So this makes chronic herpesvirus testing much easier.

    Although sometimes researchers do speculate that even latent EBV for example may be contributing to the CFS pathophysiology (but there are no tests at all, as far as I am aware, for this type of latent EBV involvement in CFS).

    One of Cort's surveys of the latest research said that there is a hypothesis that:

    An ongoing chronic and mostly undetected EBV infection by itself or in interaction with other viruses causes significant symptoms in a subset of patients (ref: here).
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i think sometimes they use replicating as the same as latent. I think a non replicating virus can cause problems where a latent infection is dormant or asleep and doing nothing. I think this is why we can still have symptoms even on av's as its only stopping the replication of the virus but the virus is still wrecking avoc on us. Maybe the whole replication/latent is where viral titres can be inaccurate, i dont know but would viral titres only show the amount of virus in the blood and show if its replicating, not showing the amount of damage the virus is causing. I think l-rnase is maybe more accurate in showing how viscious a virus is?? but all this im guessing at the moment. And rnase testing is hard to get, i think only in research settings and i think rnase would also go up and down and hard to tell with a one off test, maybe high in a 'crash'. lots of variables i guess???

    cheers!!!
  11. Hip

    Hip Senior Member

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    Do you know the approximate cost of PCR, compared to antibody tests? I have just done antibody tests in the past.
  12. Hip

    Hip Senior Member

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    I think a virus causes havoc not just by replicating and killing cells, but also by making various proteins and enzymes that serve its purposes. Viruses carry the genes to manufacture a whole load of proteins and enzymes.

    EBV has the genes to make a fake version of the human cytokine IL-10 the cytokine that switches off the antiviral Th1 response, and switches on the Th2 response. So this fake IL-10 the Epstein-Barr virus makes is no doubt messing around with our immune system. I always thought that this EBV fake IL-10 could be one reason why CFS patients are stuck in Th2 mode. But am not sure when and how EBV makes this fake IL-10. If EBV can make this fake IL-10 while this virus is a latent state, then that could perhaps explain how EBV can cause immune system problems even if not replicating.

    But all pathogens do this: they have the genes to manufacture their own cytokines, or other proteins, enzymes, etc that specifically target and throw a spanner in the works of our on immune system. They all play dirty. That's how they avoid being eliminated by our immune system.
  13. Hip

    Hip Senior Member

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    Here is a clearly written explanation:


    IN SUMMARY:

    It would seem from the above that viral culture is the gold standard (detecting the virus particles themselves, not just the body's antibody response to these viruses). However, Jose Montoya thinks that IgG antibodies are a better guide to smoldering central nervous system infection. (Though perhaps viral culture of the cerebrospinal fluid would be more precise than IgG antibodies??)
  14. Hip

    Hip Senior Member

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  15. maryb

    maryb iherb code TAK122

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    This'll be why Dr Peterson takes samples of spinal fluid?
  16. Hip

    Hip Senior Member

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    Thanks maryb. I guess it may be the reason he does that. It's news to me, though. But if anyone has good links or references on CSF viral testing in ME/CFS, please post, and they could be included in the: ME/CFS Roadmap For Testing And Treatment
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I have read that autopsy done on me/cfs patients found herpes type lessions on the spinal cord, but i dont think many have been done on ME patients??
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Wow the me/cfs road map is really great, maybe it should be also made into a sticky on phoenix rising.
    Have just missed the previous link to it or blind??lol

    cheers!!!
  19. aprilk1869

    aprilk1869 Senior Member

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    Re: the road map. In the section that talks about physical trauma you may wish to add some info on syringomyelia which can occur months or years after trauma. A cyst in the spinal cord fills with fluid causing many symptoms relating to the nervous system. The main treatment is to drain off some excess spinal fluid. I think this may have been what was wrong with my dad however he refused the treatment on offer. Luckily Freddd's protocol got rid of all his symptoms.

    http://en.wikipedia.org/wiki/Syringomyelia

    Another conditions is Complex Regional Pain Syndrome which is what a friend of mine has and was triggered by a fracture after falling down stairs. Her sister has ME so there certainly seems to be a genetic element.

    http://en.wikipedia.org/wiki/Complex_regional_pain_syndrome
  20. Hip

    Hip Senior Member

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    Thanks very much aprilk. I have included syringomyelia in the physical trauma section. It's quite an interesting phenomenon, I have just been reading about it, as it was new to me. It's particularly interesting as I understand that syringomyelia can block cerebrospinal fluid flow. I wonder what Raymond Perrin would think of this, since his theory on the cause of ME/CFS is based on blockages to lymph fluid and cerebrospinal fluid flow.


    (It is possible that syringomyelia should go into a diseases similar to ME/CFS section, which it might be a good idea to have in this roadmap, to help with differential diagnosis).

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