I am just beginning this journey, having finally seen a PCP for chronic pain and fatigue in June. I was referred to physical therapy which has helped me regain strength and mobility in my neck and back. I've been experiencing pain for at least a couple of years. This crushing daily fatigue is newer, never feeling rested despite any amount of sleep or rest. I was drinking coffee for energy and still yawning all day. I stopped the caffeine after talking with my PT team because it was causing excess muscle tension. I asked for more blood tests from my PCP last month. This is my first time testing for EBV and other immune issues. I have a low Vitamin D level (25) and my EBV profile counts are VCA IgM negative, EBNA IgG negative, but VCA IgG is 392.
I had mono when I was 11 and took three weeks to recover. But I was constantly ill as a child. From the age of 10 to 16, I dealt with ITP (Idiopathic thrombocytopenic purpura; I was treated by a pediatric hematologist who just monitored the symptoms and blood counts; my spleen was enlarged during this time), mono, chronic sinus infections (I ended up having functional endoscopic sinus surgery (FESS) at age 12), a tonsillectomy at 13, asthma and acid reflux, and moderate to severe acne treated with Accutane. In my later teens, I dealt with depression and anxiety and weight gain. I lost my health insurance at age 14 and couldn't afford to seek medical care as I once could. I took most of my health matters into my own hands in my early 20's, cleaning up my diet, finding yoga and meditation, and managing stress as best I could. But I always remained fatigued and got sick easily.
I am starting to connect more of the dots of my experience. I believe a lot of my illnesses and autoimmune were stress-related and due to complex trauma. I've been pushing myself quite hard in my 30's, mostly getting by on adrenaline and constantly setting high goals for myself and feeding off of outside achievements and goals. I am just now in a place to process a lot of past trauma and stress when I had this most recent energy and health crash occur. I have not been feeling well for at least 2 1/2 years. I still get mild petechiae from time to time, most recently on my arm from the blood pressure cuff at my last PCP visit in July. I brushed it off until I spoke with my PT and thought of all the other past health issues. That's when I went in for the extra round of blood tests.
I don't know what to make of the high antibody count. I am confused by the lack of a positive in the EBNA IgG and wonder if that could mean I don't have full immunity to suppress re-activations. I just know that I am constantly fatigued and cannot get refreshing sleep, in constant aching pain despite PT care and light exercise, have brain fog and poor concentration, am dropping things, etc. My PCP recently said my test results just mean a past infection and she cannot make a deduction based on the numbers. She is willing to talk more and refer me to a specialist in hematology and infectious disease. My own research is either coming up short or scaring me. Hoping to find some clues as to the healing path I can consider for my particular journey. I have limited resources to seek care beyond what is covered by my current health coverage. Thank you to whomever might see this. I am open to whatever tips I might find in this forum.
I’m just seeing your post as I haven’t looked on here for a while. I got mono last nov 2019 and even though tested negative for it in June 2020 I’m still pretty damn tired. I like you can only do so many things in one day, regardless of how much sleep I get. Forget exercise right now that’s a no go! I found Anthony William and his book ‘Cleanse to Heal’ which will really help you see the effect EBV has on the body and it’s reactivation. He suggests different liver cleanses to rid the body of it. I’m in the process right now. I’ve also read in here about the benefits of Lysine and Monolaurin which Anthony William also suggests in killing off EBV! I just ordered mine. I would highly recommend reading up on the diet protocol from that book and go from there. I hope that was of some help. Feel better.