How we can hijack the media, in four easy lessons
Love it, hate it, good story, bad story... the media are going to keep reporting on ME/CFS no matter what. But isn’t it time that we saw that coverage as an opportunity?
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Increasing Famvir Dose

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by heapsreal, Jun 27, 2011.

  1. satoshikasumi

    satoshikasumi Senior Member

    Note there are other kinds of primary immune deficiencies besides common variable. It's not enough to just look at IGG levels. A complete assessment involves looking at whether you are producing antibodies after you get vaccinated (i.e. if you get a vaccine and your titers don't go up, that's proof of a problem even if your IGG levels are normal). Also, absence of certain lymphocyte subsets is an immune deficiency. For example, natural killer cell deficiency is it's own disorder. The chief symptom is recurrent herpesvirus infections.

    Also, this is not common, but some patients with "CFS" symptoms have turned out to have chromosomally integrated HHV-6. This means that they were unlucky enough to be born with the virus integrated into their genes. These patients have very high levels of HHV-6 on PCR and need the most powerful antivirals, but they can be treated. Peterson, Kogelnik, and Montoya have run into this subset occasionally.

    Just because a patient meets the CFS criteria is no reason to give up looking for other causes. If your diagnosis is not helping you, find someone who is open to challenging it.
  2. SOC


    Excellent advice, but easier said than done for most of us here.
  3. Gingergrrl

    Gingergrrl Senior Member

    @SOC I found this thread from two yrs ago and wondered if more PWC's are being diagnosed with CVID now than back then? This was one of the diagnoses given by my new specialist on the forms for my insurance. It is doubtful my insurance will reimburse me anything but I am curious re: the diagnosis itself and guessing it was b/c my NK functioning was so low (5.)
    heapsreal and Sushi like this.
  4. ebethc

    ebethc Senior Member

    Hi @heapsreal - is Famvir still working for you? any side effects?

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