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?

Thank you! These responses have been helpful! I've been trying to think through again some of the timing of health and autoimmune issues. I have an appointment with Infectious Disease next month. I don't know if I will ever pinpoint when EBV first entered my system. I had ITP at age 10. I had the full-blown case of mono the next year (the month before starting my first period).

I've been finding some research papers connecting EBV antibody spikes to periods of high stress and to ACEs (adverse childhood experiences):
[ "Childhood adversity and cell-mediated immunity in young adulthood: Does type and timing matter?" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4180230/pdf/nihms599700.pdf%5D

I have built up some stamina over the past four months for brisk walks 2 to 3x a week, but I definitely have to pace activity. If I take a walk, that's all the energy I had for the day. It's strange that a walk can feel okay, but then I get winded carrying a laundry basket up a flight of stairs. I've been taking a good multivitamin and 2000 IU of Vitamin D, and just added in 200 mg of magnesium glycinate each night. I am trying to keep up with a good diet. I skip meals sometimes because of being too tired to make something.

Does anyone have thoughts on "long haulers" coming out of the COVID-19 pandemic? I am finding many similarities to chronic EBV from other communities regarding post-viral fatigue.
https://www.cbsnews.com/news/covid-long-haulers-60-minutes-2020-11-22/
(YouTube video link of this story: https://youtu.be/0gLmMPOHDwM)
https://www.healthrising.org/blog/2020/08/05/chronic-fatigue-syndrome-resources-support-long-haulers/

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@curiousr

Thank you! These responses have been helpful! I've been trying to think through again some of the timing of health and autoimmune issues. I have an appointment with Infectious Disease next month. I don't know if I will ever pinpoint when EBV first entered my system. I had ITP at age 10. I had the full-blown case of mono the next year (the month before starting my first period).

I've been finding some research papers connecting EBV antibody spikes to periods of high stress and to ACEs (adverse childhood experiences):
[ "Childhood adversity and cell-mediated immunity in young adulthood: Does type and timing matter?" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4180230/pdf/nihms599700.pdf%5D

I have built up some stamina over the past four months for brisk walks 2 to 3x a week, but I definitely have to pace activity. If I take a walk, that's all the energy I had for the day. It's strange that a walk can feel okay, but then I get winded carrying a laundry basket up a flight of stairs. I've been taking a good multivitamin and 2000 IU of Vitamin D, and just added in 200 mg of magnesium glycinate each night. I am trying to keep up with a good diet. I skip meals sometimes because of being too tired to make something.

Does anyone have thoughts on "long haulers" coming out of the COVID-19 pandemic? I am finding many similarities to chronic EBV from other communities regarding post-viral fatigue.
https://www.cbsnews.com/news/covid-long-haulers-60-minutes-2020-11-22/
(YouTube video link of this story: https://youtu.be/0gLmMPOHDwM)
https://www.healthrising.org/blog/2020/08/05/chronic-fatigue-syndrome-resources-support-long-haulers/

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@curiousr regarding long haulers, it is my opinion that they are nothing new. I am basically a long hauler from a bad case of mono that led to ME/CFS. I am thankful that there is attention being focused on those who never recover fully from viruses or other stressors. Not only as someone who has dealt with this, but as an RN I know that conventional medicine is not educated about this and even worse, they treat these patients poorly.

To help educate and bring light to this complicated and misunderstood disease, I had an article published in a few professional nursing journals about ME/CFS. It was timely due to Covid and long-haulers. Here is a link. https://journals.lww.com/nursingmanagement/Fulltext/2020/10000/Chronic_fatigue_syndrome.4.aspx

Feel free to share with your healthcare provider. (I am not sure how long it will be available online for free, but you can print it.)

Basically, CFS is triggered by a stressor. That stressor can be a virus, environmental stressors, emotional stressors such as divorce, surgery, and the list goes on. It is as if the brain senses a threat but never goes back to a normal calm state. It continues to function in stress mode. When this happens, it affects our immune system, digestive system, our neurological system, and the way our body makes energy.

Imagine a school. Teachers are teaching. Children are learning. The cafeteria workers are making lunch. The nurse is tending to those that are ill. Then, The fire alarm sounds! Everyone leaves the building. everything stops. The firemen come and take care of the small oven fire in the kitchen. Everyone is allowed back in the building and things get back to normal.
However, if for some reason they do not get the all clear signal, no one goes back to their duties. Teachers aren’t teaching. Students aren’t learning. Lunch is not being made. According to the research I have done, this is what happens leads to many of the mysterious illnesses such as CFS, chronic Lyme, recurrent EBV, and multiple chemical sensitivities.

Those are my thoughts on long haulers. Nothing new. But definitely more attention, research dollars, and compassion for its victims are desperately needed.

Know that you are not alone. You are doing the right thing by reaching out. May you find the insight you need so you can get your life back. Believe that you will get well. Keep searching. Don’t give up. I wish you all the best on your healing journey!

Here are 2 things that were pivotal in my recovery.
1. Dr Rodger Murphree (yourfibrodoctor.com)
2. DNRS (retrainingthebrain.com)

Marianne Bush

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@curiousr

Thank you! These responses have been helpful! I've been trying to think through again some of the timing of health and autoimmune issues. I have an appointment with Infectious Disease next month. I don't know if I will ever pinpoint when EBV first entered my system. I had ITP at age 10. I had the full-blown case of mono the next year (the month before starting my first period).

I've been finding some research papers connecting EBV antibody spikes to periods of high stress and to ACEs (adverse childhood experiences):
[ "Childhood adversity and cell-mediated immunity in young adulthood: Does type and timing matter?" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4180230/pdf/nihms599700.pdf%5D

I have built up some stamina over the past four months for brisk walks 2 to 3x a week, but I definitely have to pace activity. If I take a walk, that's all the energy I had for the day. It's strange that a walk can feel okay, but then I get winded carrying a laundry basket up a flight of stairs. I've been taking a good multivitamin and 2000 IU of Vitamin D, and just added in 200 mg of magnesium glycinate each night. I am trying to keep up with a good diet. I skip meals sometimes because of being too tired to make something.

Does anyone have thoughts on "long haulers" coming out of the COVID-19 pandemic? I am finding many similarities to chronic EBV from other communities regarding post-viral fatigue.
https://www.cbsnews.com/news/covid-long-haulers-60-minutes-2020-11-22/
(YouTube video link of this story: https://youtu.be/0gLmMPOHDwM)
https://www.healthrising.org/blog/2020/08/05/chronic-fatigue-syndrome-resources-support-long-haulers/

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I’ve also just been referred to an infectious disease specialist. I had two mono positive results in one year. I just started walking again but am doing everything slowly and in increments so I don’t get overly tired. Also managing all stress! I too believe that stress brought this all on, and it’s stress management that will keep it away. I’ve been following the Anthony William protocol and find I feel much better when I do versus eating lots of grains, fats etc. Its an ongoing challenge as we all here know. I’m very happy and grateful to have found this community. I’ve been messaging off and on for a year now. Blessings and patience to you all 🙏🏻

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@suewilliams64

I’ve also just been referred to an infectious disease specialist. I had two mono positive results in one year. I just started walking again but am doing everything slowly and in increments so I don’t get overly tired. Also managing all stress! I too believe that stress brought this all on, and it’s stress management that will keep it away. I’ve been following the Anthony William protocol and find I feel much better when I do versus eating lots of grains, fats etc. Its an ongoing challenge as we all here know. I’m very happy and grateful to have found this community. I’ve been messaging off and on for a year now. Blessings and patience to you all 🙏🏻

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@suewilliams64 Excellent advice!! Blessings to you as well.

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@suewilliams64

I’ve also just been referred to an infectious disease specialist. I had two mono positive results in one year. I just started walking again but am doing everything slowly and in increments so I don’t get overly tired. Also managing all stress! I too believe that stress brought this all on, and it’s stress management that will keep it away. I’ve been following the Anthony William protocol and find I feel much better when I do versus eating lots of grains, fats etc. Its an ongoing challenge as we all here know. I’m very happy and grateful to have found this community. I’ve been messaging off and on for a year now. Blessings and patience to you all 🙏🏻

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Sue Thank You for the Excellent advice!
Blessing,
From The LAnd of Enchantment!
Sundance(RB)

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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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Chronic Epstein Barr (Mono) EBV

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.

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@curryteacher

Chronic Epstein Barr (Mono) EBV

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.

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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

Chronic Epstein Barr (Mono) EBV

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.

Jump to this post

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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