Is chronic reactivated EBV different from chronic active EBV?

Posted by memecat28 @memecat28, Feb 7, 2018

I was just told I tested positive for all Epstein Barr Virus tests, except for the one that says you were recently infected. I was told I have Chronic Reactivated Epstein Barr Virus, and that I would be referred to an infectious disease doc. I started to research and everything keeps coming up with Chronic Active Epstein Barr, which seems to be a rare form and serious. Are these two forms different?

@mattkl817

I had mono first at 20 years old. Got feeling better completely within 6 weeks. Two years later at age 22, about three months ago, woke up with an acute flu like illness and two days later was feeling about 50% better, just a sore throat and fatigue. Doc tested me again for mono. Monospot gave a weak positive and EBV blood panel showed all positive except for igM was negative which they said was a past infection. Fatigue persisted as well as joint pain and muscle aches. I was tested again by a new doctor. Monospot was positive but they never ran a full blood panel again as far as I know. Lyme disease negative. West Nile negative. Spleen normal. Metabolic panel and CBC normal. Fatigue persisted and body pains went away gradually and it seemed the fatigue disappeared. Then after drinking a several drinks and getting slightly buzzed for the first time in three months, about three days later a severe sore throat recurred. Only hurt in left side when swallowing and left tonsil was enlarged. It has gradually reduced and is very mild 10 days later (about 90% better) but the incessant fatigue has returned. Also I suffer from GAD/panic disorder and started taking low dose Zoloft before the sore throat started.

Anyone have similar experiences?? I’m supposed to start my first full time job out of college in a week.

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Hi @mattkl817 ….I had a similar experience with my first known EBV infection when I was almost 21 and then a bad relapse 6 months later. I was working as an RN that included 12 hour shifts, often no breaks, and odd hours which I am certain contributed to the relapse. After 3 months off, I could only go back to work part-time and pretty much had to "couch it" on my days off. I know that is no fun for a twenty-something, right!!?? Anyway, I am now 47 and have a greater understanding of my journey with EBV relapses. I relapsed again in my 30s and most recently at age 43. I am now thankful to be on the upswing of my last relapse. I have spent the past few years reading and researching about EBV and chronic fatigue syndrome. Most people can have an EBV infection or even develop mono and go on to live healthy, happy lives. But there are some, like us, who struggle with those life-changing relapses. The theory is that the stress from the initial virus sets the body into a forever stress mode causing a cascade of challenging symptoms for the patients and the doctors. I obviously can't diagnose or advise any treatment for you or have the room in this platform to explain everything in detail, but I can share a few things I've learned….EBV was only part of my illness. It turns out that it was Chronic Fatigue Syndrome which involves many other body systems, not just the immune system. It is not well understood or even recognized by conventional physicians. Even places such as the Mayo Clinic do not have up to date information on their website. Mayo Clinic still indicates cognitive behavioral therapy and graded exercise therapy for CFS which have been disproven to be effective and may even be harmful. The CDC is a better source. Only recently has there been updated information published in medical journals. Be aware that any kind of stressor whether it is lack of sleep, surgery, work stress, relationship stress, another illness — can set you back. According to the research I've done, there is not one thing (such as a medication or lifestyle) that helped me overcome the debilitating fatigue. It involved hitting it from many angles — a clean diet, supplements, DNRS (retrainingthebrain.com), proper sleep, and stress management to begin to get well. Dr. Rodger Murphree in Alabama (www.yourfibrodoctor.com) has been a tremendous help along with Annie Hopper's DNRS Program (www.retrainingthebrain.com). You can google both of those people for more info if you'd like. Also, be aware that conventional doctors may not understand EBV and the fatigue you are dealing with. Don't be disheartened by that. Most have NOT been educated about recurring EBV and/or CFS. Many of those suffering however, have had results with a functional medicine or integrative physician. You are your best advocate! Don't give up! Take care of yourself!

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I’ve actually had active full-blown mono twice. 1st time was 1990, 2nd time around 2010. In 1995, I gotta mono\strep like infection that I couldn’t kick. I was diagnosed with EBV by my pediatrician and referred to a specialist. He diagnosed ME/CFS and it was my understanding that EBV is not an actual diagnosis. Most of population will test positive for EBV exposure, majority don’t get sick @all. If EBV is active then a person has mono.
Has your doctor mentioned ME/CFS? I would ask what the difference is between CREBV and ME/CFS? An infectious disease Dr can rule out Lyme disease, which presents similarly, too.

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I have chronic reactivated epstein barr and I am at a loss as to what to do. My former primary doctor-who is now deceased-was the one who diagnosed me, and he was the only one who ever took me seriously. Since then it has been struggle after struggle with doctors, even infectious disease doctors, as none seem to support that it exists and that it's all in my head. I have even had some try and label me crazy. I cannot afford a naturopath, so I am on my own here. I can sometimes get someone to prescribe Valtrex but don't know how long I can expect that. My last numbers were EBV IGG VCA >750, up from a previous 687.00; EBV NUCLEAR AG IGG 39.90 positive down from a previous 42 positive; EBV EARLY AG 20.20 positive, up from a previous 18 positive. I know that spells reactivation. Granted I have had enough stress to rock any boat, and have made mistakes in my diet, but I don't want to be my own worst enemy in this but I just don't know what to do. I have a supply of Valtrex; I have L Lysine; I tried monolaurin; I take other supplements, D3, Tumeric, C, A, Coq10, etc. I get freaked out because there seems to be so much conflicting information regarding antivirals and supplements and no doctor here is of any help. My CBC and all have been relatively normal. It is like I have been in a "holding pattern" of sorts; no worse but no better and I want to break that pattern for the better so folks I need all the help and advice I can get.

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There is research being done at the University of Minnesota. They have all sorts of information. https://sites.google.com/a/umn.edu/umnthemonoproject/home

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@andieca

I have Hashimoto's, which is an autoimmune disorder that attacks the thyroid. I recently started seeing a naturepathic doctor who ordered a battery of tests. It turns out I have reactive EBV. There's a connection between EBV and autoimmune disorders like rheumatoid arthritis, Hashimoto's, and about 100 others. I also have chronically low vitamin D which is known to play a part in both reactive EBV and autoimmune issues.

My Dr has me on antiviral medication, an assortment of supplements that will not only help the antiviral medication but also help calm and relax my body to ease stress (a big trigger), a specific workout plan, and my diet has been overhauled. He has cut out all gluten, grains, dairy and sugar. His belief is that since the immune system is in the gut and I have autoimmune issues than I most likely suffer from something called leaky gut which some doctors believe triggers EBV. So far so good but the antiviral medication is very expensive even with my insurance ($200 a month).

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I empathize with your situation. It's the same as mine, plus anemia & % iron saturation 8 which is a code blue alert Dr. Roach said. What antiviral medication were you on and for how long? Thanks for sharing your story.

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@acapulcoheart

I was diagnosed in May 17 with EBV Mono. Dr. said maybe 6 months and i am still experiencing fatigue. I am 56 yrs old . It has changed me completely, im always tired so i try to plan very little anymore. My body is in constant pain anymore and I think it is due to Mono. Every muscle aches on me besides the arthiritis in hands feet etc. I prefer to sit still and not move , this was not me prior.
Who should i see , does this sound the same for someone else?

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I’m so relieved I found this chat room. I’m 55 and was diagnosed with mono last Nov 2019. I had a crazy busy month that month and tons of stress going on in my life. Lay around for a month and worked the odd day. Started to feel remotely normal and then unfortunately had to move house! That set me back. Exhausted and back to laying down. Then 3 weeks after moving I moved my daughter up to LA from OC and that put me even further back. Not all the same symptoms thankfully no panic attacks or the degree of a achy limbs but upset stomach and tingling in my legs and fatigue. It’s now April 11th and no way can I exercise. A walk to the car and a brief store trip is all I can do. Doing housework is enough. It really messes with your head!! Now we are in Covid 19! All the more reason to stay back inside and no way can I get checked out by the doctor. I’m making turmeric and ginger shots to have first thing and trying to continue to eat fresh foods etc!
I’m scared to think that there’s no end to this thing!!!

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@suewilliams64

I’m so relieved I found this chat room. I’m 55 and was diagnosed with mono last Nov 2019. I had a crazy busy month that month and tons of stress going on in my life. Lay around for a month and worked the odd day. Started to feel remotely normal and then unfortunately had to move house! That set me back. Exhausted and back to laying down. Then 3 weeks after moving I moved my daughter up to LA from OC and that put me even further back. Not all the same symptoms thankfully no panic attacks or the degree of a achy limbs but upset stomach and tingling in my legs and fatigue. It’s now April 11th and no way can I exercise. A walk to the car and a brief store trip is all I can do. Doing housework is enough. It really messes with your head!! Now we are in Covid 19! All the more reason to stay back inside and no way can I get checked out by the doctor. I’m making turmeric and ginger shots to have first thing and trying to continue to eat fresh foods etc!
I’m scared to think that there’s no end to this thing!!!

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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?

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@colleenyoung

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?

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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?

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@suewilliams64

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?

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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.

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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!

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@williamswonderland

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!

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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

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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.

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