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Posts (66)

30 minutes ago · Is chronic reactivated EBV different from chronic active EBV? in Infectious Diseases

@suesm Reactivated EBV can go into remission. Chronic active EBV is the rare form, it is more serious, and is actually taken seriously by conventional medical doctors. With the CAEBV A person will have markedly elevated EBVPCR levels (dna). Often times though, people use the term CAEBV interchangeably with reactivated and the more severe form. I hope I just didn't confuse you more! EBVhelp.com is a really good resource. 😊

20 hours ago · Is chronic reactivated EBV different from chronic active EBV? in Infectious Diseases

Hi @suesm. I am so sorry you are dealing with such a frustrating illness. I dealt with reactivated EBV in my 20s and now again in my 40s. I have heard good things about Lauricidin. I hope it is helpful for you. Check out the March post at BackToLifeWellness.blogspot.com. It is a summary of what I've learned about EBV written from the virus' perspective. There are links at the bottom you may find helpful. May you feel better soon. Keep us posted!

Wed, Mar 13 8:44am · How to talk to my doctor & share research/knowledge I have found? in Just Want to Talk

@susangs I am so sorry you are dealing with CFS. I am in the same boat. In my experience in working with doctors, I have learned that they like to see the research articles. Unfortunately, I don't think there are any in medical journals yet. Printing that information from the CDC and actually handing it to her may be helpful. Doctors are extremely busy and may not take the time to look things up on their own. Be sure to include the part about the pathophysiological changes that affect people with CFS. Good luck! Don't give up! You are your own best advocate!

Thu, Mar 7 12:48pm · treatment for chronic epstein barr in Infectious Diseases

I personally have not tried LDN. Now that my EBV IgM is negative, I don't see a point in me pursuing it. I have, however, heard from folks with EBV who say it has helped them. I think it depends on what is really going on in the immune system and if there is a lot of inflammation. This article explains how it works and possible side effects for those who are interested. https://kresserinstitute.com/low-dose-naltrexone-promising-drug-hard-treat-conditions/

Wed, Mar 6 9:36am · Is chronic reactivated EBV different from chronic active EBV? in Infectious Diseases

@ddnj I apologize for taking so long to respond! I'm sorry you are going through this. According to what I have learned, your labs could possibly indicate a reactivation due to the Early Antigen being elevated. However, about 20% of folks will carry an elevated Early Antigen and not be in a reactivation. There are some resources out there that provide helpful information such as http://www.ebvhelp.com. This is a site directed by Kasia Kines, PhD who has dedicated quite a bit of time to researching this virus and recently published a book last Fall. I have also published a wellness blog. http://www.BackToLifeWellness.blogspot.com ….I simply started this so I could use my brain (once I got the energy) while recovering and to help educate others about their wellness. The post about the "Sleeping Giant…" intertwines my personal experience along with valuable info for those suffering with reactivated EBV. I wish you the best of luck. Keep us posted.

Wed, Mar 6 9:27am · treatment for chronic epstein barr in Infectious Diseases

@tmccarthy2019 CAEBV and reactivated EBV are sometimes used interchangeably in error. CAEBV is a more severe form affecting multiple organs and can lead to death. It is usually defined with a marked elevation of EBV PCR (DNA). A reactivated form is definitely debilitating but not considered a deadly form. Reactivated EBV is not well acknowledged by conventional medicine. It usually gets ignored or you are simply told to exercise, eat well, and take an antidepressant. For more info and helpful links, check out
http://www.BackToLifeWellness.blogspot.com …I'm curious as to how you were diagnosed.

Wed, Feb 13 4:15pm · Teen with weird mono...or not? in Infectious Diseases

Hi @barbus22 . I am so sorry for the difficult illness your son is going through. I know it is frustrating not knowing what is going on. Keep in mind I can't diagnose/treat. I joined this group because I was struggling with recurrent EBV as an adult. However, back to your son. The monospot test is not always accurate, so it is possible that it is not mono caused by EBV. Here is a link that has more info on EBV testing and interpreting results. ebvhelp.com
There are so many viruses and other illnesses that can mimic the same symptoms your son is having. I'm glad you are seeing infectious disease tomorrow. Write down any questions and take them with you. You are your son's best advocate. Keep searching. Don't give up.

Sat, Feb 9 7:59am · Is chronic reactivated EBV different from chronic active EBV? in Infectious Diseases

@lisa53 Thank you for the helpful information. I'm glad you were able to find some answers!