I recently had a CT scan and the results say I have an inherited disease called Chronic granulomatous Disease (CGD) where white blood cell (phagocyte) that usually helps the body fight infections doesn't work properly. As a result, the phagocytes can't protect my body from bacterial and fungal infections. It says a lifetime of antibiotics and antifungal are necessary.
My questions are, does anybody here have CGD and CLL? Are there extra considerations that need to be taken with drugs because of CLL?
Does anyone know if CGD can be dormant and then surface? I had encephalitis in 2021 and ever since I've had an issue with my IGG going low. Having low IGG is problematic with CGD. I'm not 100% positive its from my CGD, but in reading posts from others with CLL and low IGG, it sound like it could be from CGD. I've had to have the IGG infusions about once every 6 months.
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MyCLLJourney
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SNIP: "Phagocytic cells of the immune system consist predominantly of macrophages and neutrophils. These cells represent the major cellular effectors of nonspecific host defense and inflammation. Through their ability to phagocytize foreign substances and release cytotoxic and proinflammatory mediators, neutrophils and macrophages protect the body from a wide array of pathogens and xenobiotics and play a central role in the host response to tissue injury. However, these phagocytic leukocytes also possess significant cytotoxic potential. Many of the mediators released by phagocytes to protect the host also have the capacity to damage normal tissue. Thus, overproduction or unregulated release of cytotoxic mediators can lead to increased or prolonged injurious tissue reactions. This chapter reviews the physiological and pathophysiological activity of phagocytic cells of the immune system. The contribution of macrophages to tissue repair is also discussed.
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I'm not medically trained, but surprised that you are getting IVIG only every 6 months, unlike many CLL patients that seem to need infusions every 4-6 weeks.
We have some members that self administer Sub Cutaneous IG weekly - our Admin AussieNeil has posted about his experiences many years ago:
Have you been on prophylactic antibiotics all your life or is this a recent find and you managed despite of this condition all your life without too many problems?
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