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 group.

darkmatter53, I too live in Florida and am always trying to find medical doctors who understand and treat EBV. I am currently seeing a Natural Medicine doctor who is treating me for EBV. I under went ultra violet treatments which works for a while and then I fell right back to my old ill self. Now I'm being treated with amino acid peptide shots. So far I don't feel any difference. Reply and let me know where you live. I did find a practice in Tampa that I was willing to travel to for treatments. I live in The Villages between Ocala and Leesburg.

REPLY
@michellebelle

darkmatter53, I too live in Florida and am always trying to find medical doctors who understand and treat EBV. I am currently seeing a Natural Medicine doctor who is treating me for EBV. I under went ultra violet treatments which works for a while and then I fell right back to my old ill self. Now I'm being treated with amino acid peptide shots. So far I don't feel any difference. Reply and let me know where you live. I did find a practice in Tampa that I was willing to travel to for treatments. I live in The Villages between Ocala and Leesburg.

Jump to this post

Hi, I live in winter haven. I am going through the bad cycle right now. I am trying natural supplements but no improvement noted. I may request my doctor treat me with antivirals but he is a conservative doctor. thanks for your response. Regards, Frank

REPLY
@michellebelle

darkmatter53, I too live in Florida and am always trying to find medical doctors who understand and treat EBV. I am currently seeing a Natural Medicine doctor who is treating me for EBV. I under went ultra violet treatments which works for a while and then I fell right back to my old ill self. Now I'm being treated with amino acid peptide shots. So far I don't feel any difference. Reply and let me know where you live. I did find a practice in Tampa that I was willing to travel to for treatments. I live in The Villages between Ocala and Leesburg.

Jump to this post

Hi Michelle, Please keep me posted on your condition and good luck with your treatments. I have lived with this stuff for 18 years now. Seems more like 40. Have they found any other infections with you?. So far the only thing they have found on me is the Epstein. And even then, some of my doctors say it is an old infection. Go figure. Anyway, good luck….regards, Frank

REPLY
@michellebelle

darkmatter53, I too live in Florida and am always trying to find medical doctors who understand and treat EBV. I am currently seeing a Natural Medicine doctor who is treating me for EBV. I under went ultra violet treatments which works for a while and then I fell right back to my old ill self. Now I'm being treated with amino acid peptide shots. So far I don't feel any difference. Reply and let me know where you live. I did find a practice in Tampa that I was willing to travel to for treatments. I live in The Villages between Ocala and Leesburg.

Jump to this post

Frank, thanks for the reply. I have been tested for other viruses but EBV is the only one reported. I watch my diet closely and I take numerous supplements. I keep switching up the supplements and don't find any of them to help significantly but I keep trying. I have had nutrition panels done and then purchase what ever supplements the nutritionist tells me I lack. I've added zinc and a few others as well when I heard of their healing powers. I don't feel any different with any of these but maybe I would feel worse if I wasn't taking them.

REPLY
@michellebelle

darkmatter53, I too live in Florida and am always trying to find medical doctors who understand and treat EBV. I am currently seeing a Natural Medicine doctor who is treating me for EBV. I under went ultra violet treatments which works for a while and then I fell right back to my old ill self. Now I'm being treated with amino acid peptide shots. So far I don't feel any difference. Reply and let me know where you live. I did find a practice in Tampa that I was willing to travel to for treatments. I live in The Villages between Ocala and Leesburg.

Jump to this post

Michelle, Yes it is frustrating. You might want to research the use on herpes antivirals for Epstein since they are all in the same family. I am going to try convincing my doctor. Good luck and let's keep in touch. regards, Frank

REPLY
@darkmatter53

I tested positive for EBV in 2016 despite the fact I had mono while a teenager. Quite frankly, most doctors do not understand this disease or shrug it off with the belief that mono only comes once. If any out there truly know of a good doctor that understands EBV can become reactivated. please let us know. I live in florida

Jump to this post

I’m a 40 year active male that had mono/ebv in college for about 10 months. Been relatively health (workout five days a week) work full time father of two) but have had four EBV reactivations since I was twenty. Currently on a month and a a half of extreme fatigue and malaise. I switched jobs so it was triggered by stress. This isn’t mental people it’s basically herpes 4 and the key is to push it back into hibernation not kill it. Super frustrating

REPLY
@darkmatter53

I tested positive for EBV in 2016 despite the fact I had mono while a teenager. Quite frankly, most doctors do not understand this disease or shrug it off with the belief that mono only comes once. If any out there truly know of a good doctor that understands EBV can become reactivated. please let us know. I live in florida

Jump to this post

Thanks for your response. Yes, I agree. It is bad enough to have to fight this thing and the doctors, too.

REPLY
@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?

Jump to this post

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).

REPLY
@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?

Jump to this post

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.

REPLY

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

REPLY

Hello, @mikla, and welcome to Mayo Clinic Connect. Sorry to hear some of your post was lost. It would be great to hear a bit more of your story, if you'd like.

How are you feeling about the results of your Epstein Barr Virus (EBV) test?

REPLY
@darkmatter53

I tested positive for EBV in 2016 despite the fact I had mono while a teenager. Quite frankly, most doctors do not understand this disease or shrug it off with the belief that mono only comes once. If any out there truly know of a good doctor that understands EBV can become reactivated. please let us know. I live in florida

Jump to this post

@darkmatter53 I personally have yet to come across a doc who truly understands it. I have seen my primary doc, infectious disease, integrative medicine, endocrinologist, and a GI doc. However last week I came across Dr William Rawls. He is an MD who became ill during his forties. He was dx with fibromyalgia, Lyme, and reactivated EBV. His doctor colleages were unable to provide answers. So he spent several years researching and ended up healing himself with lifestyle changes and herbs. I think he is a doctor who actually gets it. I feel he is legit too. I watched his webinar called "EBV Virus and Chronic Fatigue Connection." I don't have the link handy but you can google him or go to his we site RawlsMD.com.

REPLY
Please sign in or register to post a reply.
  Request Appointment