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?

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@ljs8869

Are you still taking astra isatis? If so, I haven't been able to get it anymore run out today. Looking for replacement options. What are you doing for it??

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@ljs8869 @caebvqueen @curiousr Welcome to Mayo Clinic Connect, a place to give and get support.

@suewilliams64 You mentioned you were keeping stress away. May I ask how you are doing this?

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<p>Chronic Epstein Barr (Mono) EBV</p><p>My daughter has been to the Dr three times since 2018 and each time was diagnosed with active Epstein Barr (Mono). We need a specialist to help us with this and get her the treatment she needs. She is 18, full time college student and very tired.</p>

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@curryteacher

<p>Chronic Epstein Barr (Mono) EBV</p><p>My daughter has been to the Dr three times since 2018 and each time was diagnosed with active Epstein Barr (Mono). We need a specialist to help us with this and get her the treatment she needs. She is 18, full time college student and very tired.</p>

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@curryteacher Welcome to Mayo Clinic Connect, a place to give and get support.

Your daughter has been diagnosed with active Epstein Barr (Mono) three times since 2018 and you are seeking treatment options.

You will notice that I moved your question to a previous discussion related to Epstein Barr (Mono). I did this so you could connect with members like @suewilliams64 @caebvqueen @ljs8869 @januaryjane @tiffperr @bavardlyn that are currently discussing this topic. You may wish to scroll through the previous posts for information and member's past experiences.

May I ask if you are looking for members to name specific providers that your daughter is able to see for treatment?

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@erikas

@ljs8869 @caebvqueen @curiousr Welcome to Mayo Clinic Connect, a place to give and get support.

@suewilliams64 You mentioned you were keeping stress away. May I ask how you are doing this?

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I’m certainly no expert, even though I am Certified in Mindfulness it’s still a challenge when it comes to yourself. I’ve noticed how I hold my body throughout the day. The hunching of my shoulders and taught allover. It builds up depending on what’s going on, not hard with the state of the planet right now!! Once I remember I just make a conscious effort to lower my shoulders etc. Its all day long. I’ve lived in ‘flight or flight’ most of my life like a lot of people. Now I have to unlearn that tense state. I was so stressed out a month or so after my ‘ all clear’ from the last mono bout, no wonder I tested positive again 3 months later.

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@curryteacher

<p>Chronic Epstein Barr (Mono) EBV</p><p>My daughter has been to the Dr three times since 2018 and each time was diagnosed with active Epstein Barr (Mono). We need a specialist to help us with this and get her the treatment she needs. She is 18, full time college student and very tired.</p>

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Please look up Anthony Williams protocol in his book ‘Cleanse to heal’. I only saw change and progress healing from this when I gave up fats, diary, sugar that continue to feed the virus!! He also recommended cat claw, lemon balm, L lysine, monolaurin! They have all helped. It can add up cost wise so just get the last two on the list if you have too. I hope that helps.

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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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same for me,ive had it for years now with realizing my armpits hurt around smoke alot worse and burns to lift my arms and feel really sore after moving much, 1 shot of dexamethasone shot made my throat pain go away for good though but still left with the pain for 5 years. Sometimes suicide feels like the only option.

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Yes; 56 and tested positive for mono twice last year!
It’s life changing for sure! I had tons of energy before and had several jobs on the go. You have to only prioritize moving forward one main thing at a time. I highly recommend reading ‘Cleanse to heal’ by Anthony William on how EBV works and how to truly get rid of it altogether. I’ve got his books and changed my diet drastically. It’s really helped and it becomes an ongoing lifestyle. He also suggests supplements. Cat claw, Monolaurin, lysine, lemon balm. Many more but pick a few as it adds up. Hope that helps

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@cnoto

Just diagnosed, but it gets really scary when you read NIH research for CAEBV!

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Ive heard but not sure completely that a blood Stem cell transplant could help cure chronic active ebv for some.

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@shadow95

Ive heard but not sure completely that a blood Stem cell transplant could help cure chronic active ebv for some.

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Sounds a bit drastic. The trick is to starve off the virus itself ‘EBV’ and you can do that with diet.

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I've read through lots of the replies to this question, but haven't seen the answer. Are they the same (CREBV & CAEBV)? I'm desperate for answers/help. My family physician, who I truly respect, says there's no help for EBV - no need to go to an infectious disease specialist. Is this true?

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