Chronic Mono? 5 years undiagnosed

Posted by karmagirl @karmagirl, Nov 24, 2018

I have been having "mono signs" (with no exposure) for almost 5 years: sore throat, severe fatigue, flu like condition without fevers. It is cyclical, lasts 3-5 days to the point I am in bed for days. I have given up most of my gym/exercise activities because I only have about 4 hours a day of productive time. I have seen internal and family doctors, endocrinologist, infectious disease, urology. So far they do not know why I have persistent: low blood count, high IG Immunoglubulin labs (700s) and kidney stones with bloody urine (that does not cause bladder infections). I am over 50, normal weight/BMI, normal blood pressure, normal blood sugar etc. but does not know who else to see. I get my annual physical with no other abnormal labs or tests. I'm not a hypochondriac and being dismissed with menopause does not seem to fit my condition. Need guidance to thrive, not just to stay alive. Thank you for your time.

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seevans | @seevans | Jan 16, 2019

Epstein Barr Virus ( mono) remains in your system forever once you have it and can reactivate. The traditional mono test will always come back positive so they really need to be testing to see if virus is active. Are they doing that? With that being said, I have a grandson with an auto-inflammatory disease called Familial Mediterranean Fever. Auto Inflammatory disease is when your immune system goes into an inflammatory response for no reason. There is some discussion of late that EBV may cause the gene mutation that results in auto inflammatory diseases. I know that FMF can affect the kidneys.