Is chronic reactivated EBV different from chronic active EBV?

@mikla That is great news! Sounds like she is knowledgeable and supportive. That is a rare find.

Hi, Where is your doctor located? What is her specialty? Is she seeing new clients? Thanks and good luck Frank

Hi Frank, Unfortunately, the wonderful ND that found the misdiagnosis of Lupus, CFS so fast has retired. He was a staff person at Bastyr Naturepathic
University's Seattle clinic. He's the one who first ordered the labs that confirmed the EBV reactivation. Another ND there several years later ran them also, but she is now with Doctors Without Border's in South America. When I ask my traditional docs to run the tests, they just run the same old ones that they run that don't pick up anything. I am pretty much on my own now, but knowing what works, I just keep using it.
Lysine is available everywhere and is inexpensive.
Monolaurin is harder to find, but Amazon does have it, and another ND has ordered it from her sources for me. Same for the Astra-Isatis. The monolaurin and Astra-Isatis are expensive, ($50-$60 each) but for me it's the difference between having a life and not having one. The Bastyr teaching clinic here can be wonderful, or can be frustrating. I'm in my 70s, so it only costs me $20 a visit. I was lucky. For years I had great student teams and docs. Now
I see a private ND for other reasons and she is much more expensive, but good. Where are you located? I do so hope you will be as fortunate as I was
in feeling wonderful again!

For 20 years I've thought I had arthritis only to find out recently that my RF and X-rays are normal. I have fatigue, joint pain all over, brain fog, etc. I asked my doctor to test for Lyme and EBV, bc all of this started a few years after I had Mono. My EBV came back very high and the labs show positive for reactivated EBV. My doctor is clueless and I am frustrated. I am super excited by @magbatt suggestion of natural medicine. I plan to start that pretty soon. I'm glad to hear that I am not alone. If anyone finds a doctor in GA I would love to hear about it.

I just joined this group. I am 56 years old and suffered acute mononucleosis when I was 21 and in college. A perfect storm of stressful events triggered reactivation in 2014. I was diagnosed 3 1/2 years ago with Reactivated EBV. I never thought it would hang on so long. Mine affects muscle and energy recovery time, as well as flu-like symptoms ( body aches and chills, swollen lymph nodes) after periods of stress or overdoing it. Overdoing it could be as simple as attending a birthday party and doing 1 hour of light housework. It's as if my body punishes me by saying "how dare you try to live your life!". I understand that it affects us all a little differently. I was able to get SSDI after 3 years of appeals, which the stress made me even sicker. This is a very misunderstood illness with lots of ramifications. Last night I started crying again from frustration over having another "flul-ike episode. Which have been appearing almost daily while I amin the middle of a divorce and selling the house. I have had to research most of what I know because the medical community isn't well versed in this.

Wow, no one has ever mentioned to me about an infectious disease doctor. I hope this doctor can help.

Hi @luannkelly! I'm glad you found this forum. I could have written your first post! I came down with a bad case of mono just a month shy of 21 y/o and not long after recovery ended up with "persistent EBV infection." Unfortunately at that time the internet was not around so I accepted the diagnosis and lived part-time. My thirties went well except for a 9 month relapse. Currently, I am 46 and have been in a relapse for over 2 years. I have had to quit my job because I couldn't even work from home. I know I don't have to explain because you understand the frustrating fatigue. I missed plenty of birthday parties, weddings, and other activities with family and friends. At one point overdoing it was making breakfast! I have been a part of the medical community for over 25 years as an RN and unfortunately, they don't get it. That has been extremely disappointing for me. You are your own best advocate! Join online EBV support groups such as this. Learn about what is helping others. Research it and then make the best decisions you can for your health. I saw an infectious disease MD 2 years ago who dismissed me as they have dismissed others. There are some who have been helped by infectious disease though. It's just hard to find a good one. From what I have learned from fellow EBV sufferers is that it's usually diet, supplements, and lifestyle changes that help the most. In addition to some being helped by taking Valtrex (antiviral med that can be ordered by your primary care doc). I'm currently following a protocol (diet and supplements) by Dr. Bill Rawls who has suffered from Lyme, CFS, Fibromyalgia, and reactivated EBV. Definitely pace yourself! Even if you feel like doing a lot in one day -- don't. You will pay the price. I've learned from experience as I have improved (still a ways to go but am optimistic!). I am sorry for all the stress you are going through right now. That definitely hinders the immune system. Please don't give up, hang in there, be your own advocate, and lean on support groups even if it's just to vent. We have been there. 🙂

Hi @purpleholli. I am sorry for all the symptoms you are experiencing and the disappointment you feel towards typical doctors. Unfortunately they do not understand chronic illnesses like this. Mine told me to exercise! Of course I would if I could -- I used to run half marathons and lift weights. Anyway, I'm confident you will find some hope in alternative treatments. Learn what is helping others by reading all you can on online support groups. From what I have read, many have been helped with diet changes, supplements, lifestyle changes, and Valtrex (antiviral medication). Do your research and then make the best decision as possible. I'm currently doing a diet and supplement protocol by Bill Rawls, MD. He is a physician who has been through what we have including the frustration with the medical community. I also did the research on Valtrex and asked my nurse practitioner if that was something she would consider. She researched and went ahead and ordered it. This journey is definitely not a sprint, but rather a marathon. Learn, plan, pace yourself, celebrate small improvements. Let us know how you do. I wish you a full recovery!! 🙂

Hello,
I am having so much problems for two months now, I am swollen on my entire lymphatic path, it has been a long painful story for me, the only abnormal tests were the EBV and my doctor is one that doesn’t understand it either...Im suffering beyond words...is the valtrex working for you? Plz advise, thank you
Jenny

Hello Magbatt,
Can you please tell me which antiviral medicine has worked for you? I am so so desperate...