Is chronic reactivated EBV different from chronic active EBV?

Hi @suewilliams64, welcome to Mayo Clinic Connect. You're not alone in being fearful that COVID-19 will have no end. I'm remain confident that it will, but getting back to normal will not be the normal we once knew. I believe some things will be changed and some of the changes have the potential to be positive changes. But the immediate repercussions are challenging to say the least.

If you're interested, there is a group dedicated to connecting members during COVID-19, to help answer questions and share coping strategies, as well as some delightful diversions when it all get to be too much. Check it out here:

- COVID-19 Support Group https://connect.mayoclinic.org/group/covid-19/

Are you able to be kind to yourself when you're fatigued and do only as much as you can do? What are your strategies?

Hi Colleen; I appreciate your response very much, especially when the last conversations were a year ago almost! Yes I am laying around at home, getting groceries delivered and only venturing out in the car for a 30 min drive once a week! Meanwhile I have tingling in my legs and some brief hot flashes ( could be menopause) I don’t notice the leg thing until I’m laying or sitting down. I’m noticing that if I allow myself to stress out ( Covid, money, work) then that tingling and fatigue hits immediately! Mental state I realize now is huge in mono recovery. I just wonder if these symptoms are normal 4.5 months in?

Sue, while this discussion was started in 2018, members have posted more recently than a year ago. I'm hoping that our conversation will entice members like @sherryntn @mrmie @bavardlyn @willsmarygrace @lisa53 @tiffperr and others to return to the discussion.

You might also be interested in this EBV discussion:
- Treatment for chronic epstein barr https://connect.mayoclinic.org/discussion/treatment-for-chronic-epstein-barr/

I agree, @suewilliams64. Mental state influences our physical wellbeing in many ways and can worsen symptoms of conditions, such as mono recovery. It's really important during this pandemic crisis to find things that relax us and bring us pleasure. I'm looking forward to the weather getting warmer and to be in the backyard. So I've been daydreaming with virtual tours of virtual gardens today. Try these https://www.nationaltrust.org.uk/hidcote/features/hidcote-virtual-tours They are short. Turn on the sound to enjoy the peace of the birds chirping too.

This thread looks old, but I am going through a similar situation. I was diagnosed with Mono in June 2019 through MonoSpot. I felt horribly weak, feverish, swollen, sore throat for around 2 months. I haven't felt well since then. Recently, since the beginning of April 2020 I have had the same Mono symptoms and tested positive on a MonoSpot again a couple of days ago. I didn't even think about how similar my symptoms were to Mono this time because even though I am a nurse and know it lives "dormant" in your body after infection, I didn't put 2+2 together this time. I am considering having my PCP perform the more specific immune tests so that I know more about what is going on with me. I am excited to research Dr. Rawls and what he went through, as I can relate to a lot of symptoms/feelings posted here. I really thought I was going crazy!!! God Bless!

Hello @williamswonderland, Welcome to Mayo Clinic Connect. Thank you for posting. Is this the Dr. Rawls topic you want to research?

How to Manage Viral Reactivation: Epstein-Barr, CMV + More:
-- https://rawlsmd.com/health-articles/how-to-manage-viral-reactivation-epstein-barr-cmv-more

Hi, I had very bad mono that I struggled with for a few years (testing positive for current infection). Like others I was never the same physically and sick often. After years of going to drs, about over a year ago i went to a infectious disease dr. Got blood done and he sent me a note that i had reactivated ebv. Wouldnt take a second appointment, just had to "rest". Months later i tried for the last time for an appt. He would not see me. Im pretty sure ive had many reactivations, but no doctor takes this serious or has any concern. Where do you go for help? Where will they care? Im having a flare now that seems endless. I feel awful.

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.

Curious which supplements have you tried. Have you heard of Isabella Wentz? Check out her protocol on Epstein.

Are you still taking astra isatis? If so, I haven't been able to get it anymore run out today. Looking for replacement options. What are you doing for it??