New era for ME/CFS research as top cytokine study attracts media headlines
The immune systems of patients who have recently developed ME/CFS look markedly different from those who have been ill for much longer, according to a major new study from Drs. Ian Lipkin and Mady Hornig at Columbia University. This shift in immune function hadn’t been seen before.
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Antiviral Treatments for POTS or Orthostatic Intolerance?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Hip, Feb 5, 2013.

  1. Hip

    Hip Senior Member

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    Has anyone experienced a reduction or remission of postural orthostatic tachycardia syndrome (POTS) or orthostatic intolerance (OI) symptoms after taking a course of antivirals or immunomodulators?

    ME/CFS itself of course has been linked to a number of viruses, including enteroviruses and herpes family viruses.

    Herpes family viruses such as EBV, HHV-6, CMV and HSV-1 are often reactivated in ME/CFS patients, and studies have shown that ME/CFS symptoms may improve after taking antiviral drugs for herpes family viruses — drugs such as Valtrex (valganciclovir), Famvir (famciclovir) and Valcyte (valganciclovir). Study references: 1 2 3.

    Similarly, ME/CFS symptoms may improve after taking antivirals/immunomodulators for enterovirus — such as oxymatrine.

    I have not seen any studies explicitly showing that herpes family viruses or enteroviruses are reactivated in patients with POTS or OI. But given that these two conditions arise a lot in ME/CFS patients, it seems reasonable to assume that there may be some sort of viral etiology behind POTS and OI.


    I just wonder if anyone has taken a course of antivirals or immunomodulator drugs, and noticed an improvement in their POTS or orthostatic intolerance symptoms.

    For example, if you have been regularly measuring the severity of your own POTS by means of the home version of the tilt table test, has anyone here seen improvements in their POTS severity after a few months of antiviral or immunomodulator treatment?


    The home version of the tilt table test is of course just lying down still for ten minutes on your bed, and then noting the increase in heart rate you get when you stand up. An increase in your heart rate of 30 beats per minutes or more on standing gives you a diagnosis of POTS; but even slightly lower increases indicate you have some degree of POTS, and in general, the degree of increase in heart rate indicates the severity of your POTS.
     
    CallieAndToby likes this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hip I can't claim a direct result but I have taken immunomodulators and meds that would affect viruses (nexavir, GcMAF) and my OI is better but I have also done other things like methylation therapy and detoxification.

    So I can't say for sure but there is probably a connection.

    Sushi
     
  3. voner

    voner Senior Member

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  4. SOC

    SOC Senior Member

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    My daughter's OI improved significantly after Valcyte treatment. She had to take Florinef for a while to prevent her passing out in class, but was able to go off it once her HHV-6 and EBV were no longer active. She still has tachycardia, but that's not affecting her functionality.
     
  5. CallieAndToby

    CallieAndToby Senior Member

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    florida
    Interesting question, look forward to seeing more responses.

    The immunomodulators, specifically immunovir, give me horrible tachycardia (180 bpm), not sure why and no doctor has tried to explain this.

    Equil. doesn't give me tachycardia but hasn't helped OI at all. Never been on antivirals...................
     
  6. CallieAndToby

    CallieAndToby Senior Member

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    Awesome blog. I look forward to reading it. I really need help with my OI and this blog seems so relatable.

    I think the biggest issue with IVIG is it's so expensive and insurance won't cover it (at least mine won't). My aunt uses it for: hypogammaglobulinemia and my best friend for: Idiopathic thrombocytopenic purpura (ITP), getting weekly infusions, but without it they'd die, so I think most doctors feel like it should be reserved for such things.
     

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