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?

Interested in more discussions like this? Go to the Infectious Diseases Support Group.

I have CAEBV/CEBV. I have elevated titers...the one that should go down after six months is very high. But, the most important test is the DNA test...PCR. That is also high.

The way I just learned it is there are two forms of CAEBV...or Chronic Active EBV. CEBV, which is chronic, but not terminal. My rheumatologist says if it never hits my liver it just will make me sleepy all the time. Then there is SCAEBV or Severe Chronic Active EBV. Terminal, unless treated and cured by hemopoetic autologous stem cell therapy bone marrow transplant. It is usually due to immunosuppresent meds after organ transplant or severe immune deficiency, especially in kids (I have milder CVIDS or Common Variable Immunodeficiency Syndrome. The most common of the rare PIA's or Primary Immunodeficiencies. You may want to see an immunologist for testing. It causes decreased responses to hypervalent vaccines, chronic sinusitis, low IgG orIgM. I get 35 grams Gammunex IVIG over 3.5 hours with home health RN, at home every 3 weeks. It has resolved my chronic sinusitis and eliminated my frequent colds for over ten years. I am still horribly fatigued and sleep like 18 hours a day despite 60 mg Adderal (off label tx for fatigue, by psychiatrist) and Teacrine supplement an hour before I need to wake up for doctor visits, etc...they do help. Teacrine 100mg is on Amazon. If I just lay around, I can go back to sleep, but if I push myselfto get moving, they help me.
If you want my history...
I got mono at 16 years old. Almost died, doctor said. Was never well, anyways since maybe five years old.. Fatigue worsened over the years. Was a Veterinary Technician x 8 years, then LPN x 18 months full-time in rehab facility, then went to home health, then Private Duty, then part-time (once a week karaoke host x 7 years in there, somewhere), then non-gainfully as I fought to get SSI disability until unable to work, at all in 2007. I also have many other diseases. I used to have severe pain, but am way better on 10mg methadone two twice daily, 1 Norco 10 2-3 x a day, Botox every 12 weeks for chronic daily migraine and 10mg Compazine 2 every night, up to 4 a day which is an underutilized med for migraine pain, not just neasea. I have autoimmune adrenal failure, sero-negative RA rheumatoid arthritis, osteoarthritis, GERD or reflux with Barrett's Esophagus, frequent,idiopathic anemia requiring 3-4 iron infusions every 3-6 months, pancreatic atrophy (just found on CT, seeing GI doc soon), had Grave's hyperthyroidism as teen, then had radioactive iodine so am hypothyroid, osteoporosis, had Stage 4 endometriosis and in 2007 it atrached a loop of bowel to gallbladder causing weird pain doctors ignored for 18 months as I lost 45 lbs until I had it and ovaries and unterus removed and it was about to infiltrate bowel which would of been fatal, was left with nerve damage to right side, Small Fiber Neuropathy or SFN which was Hell and was misdiagnosed as Fibromyalgia for years, and I suffered a lot until methadone...was on 80mg total a day, but cut in half after keto diet and 40lb weight loss. Very low carb also helps my pain and heartburn. SFN is diagnosed by a neurologist with Autonomic Testing like tilt table and by 2-3 leg biopsies (arms, too if affected) sent to Therapath Labs, two versions...SGNFD or Sweat Gland Nerve Density Biopsy (mine was + and ENFD or Epidermal Nerve Fiber Density biopsy,mine was -...some labs only check ENFD so miss a lot of SFN!). It was awful, at first because two neurologists said I didn't have SFN so pain doctorsent me to shrinks. I called Therapath and a lead scientist said I did, then also a 3rd neurologist. I shattered tibia and fibula at knee about 6.5 months ago, regained 40lbs so just got back on keto. Bilateral, necrosis of humeral heads or shoulders on CT, due to chronic sterouds for adrenal insufficiency, but mild, no pain. Will probably be a decade before I need joint replacement. I am about to turn 57.

I do not know if anything is associated with my CEBV. I have read MS can be. I do feel like it impacts immune health so could have caused my autoimmune problems.

Oh, when I was on fentanyl the SFN began...before they got methadone dose high enough I got a lot of relief from PEA or palmitolethanolomide 400mg, three times a day with Alpha Lipoic Acid R fraction and a healthy fat like coconut oil...I saw a new version with luteolin added to boost is well studied in Europe for pain. I should get back on. Saving it if they ever cut my pain meds! It is a fatty acid that works on cannibinoid receptors and works even if medical Marijuana fails, also helps animals so not a placebo, which also don't help me. I used Vitality's brand.


What antiviral did your doctor put you on? How long have you been on it? Is it your family doc that prescribes it or a specialist? And most importantly, is it helping? My doctors have never suggested antivirals most likely due to lack of knowledge.

Jump to this post

When first Dxd ID doc tried high dose Valtrex. Since then, learned the only treatment is bone marrow transplant, but they probably only do it for SCAEBV not CEBV.


Just got my EBV test back.
EBV IgM - Negative wow... this site just chopped off a big chunk. Not typing that again!

Jump to this post

Heh, always type in email, then copy and paste!


I too have been feeling the effects for six months. I've gone to numerous doctors. Right now I waiting for an appointment with a doctor to start (I hope) the Light UV blood treatments. Once I have some more information about this therapy and other related therapies I will pass it along. It has taken me a while to find a doctor who will address my fatigue issues. I'm certainly not the person I used to be. I went from being very active to no physical activities.

Jump to this post

Did you ever have UV light therapy? Any help?


It has been 9 months for me and I still take naps and now i have widespread pain throughout my body as if arthiritis as taken ovet my entire body .Its hard to walk and I just don't want to move my body at all because of it. Before Mono i was a non stop person.I cant get anyone to truly heear me who specializes in this

Jump to this post

Hi. I have all the symptoms you have and you feel like someone dropped you from a 20 story building. Ice cold night sweats, treated for low Vitamin D. Anemia, palpitations, neurological issues manifesting in my vision. It will be like I am looking at the sun with my eyes closed. Those episodes last about 10 - 20 minutes. I get shaky and my heart will start pounding and beating super fast then the palpitations come. Yeah. I feel for you. My doctor said there is no treatment and to see a psychiatrist for my symptoms. Haha. Yep. So I am in pain management. There is a support group called and so many people have blown their life savings on naturalpathic/functional doctors that cost a fortune and they are all still sick. Some protocols may hold the disease back a bit, but inevitably it wins. I am sorry you are going through this. I am 48 and was just diagnosed in April 2023. It was almost a year of being sent to every doctor under the sun etc. Relieved to have a diagnosis and am letting nature take its course. Much love and try to stay strong buddy.


Hi Dunnamac,

So sorry to hear you are caught in the clutches of this nasty, under recognized, under treated virus. Unfortunately, the wonderful ND that I saw at Bastyr here in Seattle has retired. Truth be told, I haven't found anyone who could fill his shoes. He IMMEDIATELY recognized my ANA pattern as

So the protocol didn't work for you? I must admit, I have had lengthy
reactivation's that have not responded well. I wish I could help you, but at
age 80 I am still searching and barely keeping my head above water.

I said in the last post that I don't take Valtrex. I do now, and just switched to
a different prescription anti-viral. I work with an ND who is a Bastyr
graduate, but it is very expensive. Vitamin C and B-12 via IV have helped.
I take so much other stuff, all thoroughly researched on multiple sites
then confirmed on NIH site. It has been really tough to dig out credible information, as you have probably discovered.

One bright light on the horizon is the new interest in EBV because of its
suspected close relationship to the Covid 19 virus. Some medical circles
are now saying Longhaul Covid is actually a reactivation of EBV - caused
by Covid. Many with LHC show very high numbers on blood tests.
Now we at least have some segments of traditional medicine believing
us, and researching what they have swept under the rug from the beginning.
Four years ago it was hard to find credible EBV information. Now I can't keep up with what I find every day. Everything I find I run by the NIH sites.
I believe in the Covid vaccinations, but three days after I had my final
booster, I had an horrible EBV reactivation. Of course everyone except my
ND thought I was crazy. She ordered the labs and yes - I was having a
massive flare up. It took six months for me to find that yes, "Long Vax"
is a thing. It's very rare, but it is a thing. I can never have another vaccination.

There is also a lot of "mix and match" with ME/CFS. (Myalgic Encephalomyelitis (sp) and Chronic Fatigue Syndrome) and EBV.
Some (including me) believe that CFS is actually driven by EBV, but very few
doctors know how to run the lab tests. My GP did not know, but ran them
for me as directed by Bastry so my insurance would cover the cost.
One interesting aside, for decades she has been "distant" from my EBV
claims, but now she has a number of LHC patients and believes there is a
connection to EBV. One more thing - I don't know how much research you
do , but I find I get different sites on my phone than I do on the computer,
so I use both.

I wish I could reach out and hug you. This is a nasty enemy we share, and I
well know how miserable you may be - and to top it off, nobody knows or
believes you! Keep the faith, and keep searching. Good things are coming
out more and more these days. Good luck!

Jump to this post

Thank you so much for sharing. I wish you good health.

Please sign in or register to post a reply.