Hello!
I am new here and new to posting in a forum. I am a 37yo female who has experienced Mono three times (ages 14, 25, 29 ) and CMV (cytomegalo virus) about 18 months ago. I experience extreme fatigue, intermittent low-grade fevers, painful lymph nodes in the neck and groin, chronic nasal and chest congestion, nerve pain that feels like a sunburn on the inside of my body (I’m really fun at parties!).
When I had the CMV I saw an infectious disease specialist who told me in essence, “Yeah, that sucks.”
I’m wondering if my next step is to an immunologist for more testing? I am so frustrated and defeated.
I am married and have a 3 and a half year old son. I want to be present and more active with both of them, but I feel zapped all the time.
Would love to know other people’s experiences or thoughts on getting answers.
Thank you so much,
Erica
Hi Erica,
I am so sorry this has happened to you. I had mono in college at age 19 and then again last year at age 35 I had active EBV after complaining to multiple doctors about more than a dozen odd symptoms. Finally, a Rheumatologist thought to check for it. Whether I actually caught it again (no idea how as I was single and had not been kissing anyone, sharing drinks, etc) or it reactivated from the first time-I may never know.
In any case during the course of figuring out it was active EBV, I was also test for RA, Sjorgens, Lupus, Hepatitis, vitamin B12 deficiency, magnesium deficiency and had multiple metabolic panels done. I did not have any of the ailments listed above and my blood panels always came back normal. However, about a year later I went back to the doctor with some stomach issues-turns out I have Celiac disease. Makes sense as I have also gotten migraines and was having bladder issues and an assortment of other odd occurrences throughout my adult life.
I would ask to be tested for other autoimmune diseases and/or food allergies. They say a lot of the immune system lies in the gut. I had essentially been poisoning myself with gluten for who knows how long which is why I’m sure my body had a hard time kicking EBV. Also-do you get enough sleep? Stress levels? Vitamin deficiencies?