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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Here in Tucson, AZ, infectious disease specialists won't even make an appointment for people with EBV. And Mayo Clinic in Scottsdale also will not see patients for that diagnosis. I think your family doctor would have been more correct to say that the vast majority of family physicians do not know how to help us. I have lived with this issue off and on (more on than off) for almost 30 years. The only MD who really helped me was the one back in New Jers4ey who diagnosed me with EBV. But even his help was not enough. I started going to a really good chiropractor. And weekly chiropractic adjustments made it possible for me to work until retirement age. Don't ask me why because I can't tell you …. except that the physical stimulation worked. I finally found a good chiropractor here in Tucson. And she too is helping. I also tried acupuncture back east. I had about 8 sessions. Not only did I walk out of that clinic feeling great; I actually felt like dancing. Acupuncture also had a lasting effect. I also tried acupuncture out here; sorry to say it did not help. But I may very well try it again. And yes, supplements help. But I don't go crazy with them. Vitamins, yes. Lysine, yes. I try other things but haven't found them as helpful for me as others indicate for themselves. Sorry I can't answer your question; it's mine as well. But the bottom line is that you have to depend on yourself as your best advocate. I wish you well. JB

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@shadow95

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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@shadow95 Welcome to Mayo Clinic Connect a place to give and get support.

You mentioned that "Sometimes suicide feels like the only option." This is due to pain. Do you feel like you are able to keep yourself safe?

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@erikas

@shadow95 Welcome to Mayo Clinic Connect a place to give and get support.

You mentioned that "Sometimes suicide feels like the only option." This is due to pain. Do you feel like you are able to keep yourself safe?

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I think many of us have considered the suicide option. When you feel desperate day after day, and there is no cure available, and many people including medical experts do not take you seriously or do not try to help you, it is terrifying and life doesn't seem worth living. It feels like you are half alive and half dead just watching others enjoy themselves. Heart-breaking. There is a huge mental component to this illness, and that's just one reason why it needs MUCH more attention. I hope shadow95 is okay. It is a daily struggle and battle, and I hate every second of it. I wish I could meet with others in person. I think it would help immensely.

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You say “I wish I could meet with others in person.” I have not thought this through, but I’ll put it out there anyway could virtual get togethers serve a helpful, supportive role here? Like a “Zoom” with individuals interested in supporting each other. A little more personal than typing/reading?

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@nataliem

I think many of us have considered the suicide option. When you feel desperate day after day, and there is no cure available, and many people including medical experts do not take you seriously or do not try to help you, it is terrifying and life doesn't seem worth living. It feels like you are half alive and half dead just watching others enjoy themselves. Heart-breaking. There is a huge mental component to this illness, and that's just one reason why it needs MUCH more attention. I hope shadow95 is okay. It is a daily struggle and battle, and I hate every second of it. I wish I could meet with others in person. I think it would help immensely.

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I completely agree. I just want to get back to my old self and exercise again. Also trying to follow diet protocols to cure EBV during a pandemic where we are so isolated makes it all even more challenging.

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@wty2020

You say “I wish I could meet with others in person.” I have not thought this through, but I’ll put it out there anyway could virtual get togethers serve a helpful, supportive role here? Like a “Zoom” with individuals interested in supporting each other. A little more personal than typing/reading?

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I would be open to that. If a zoom meeting was organized, I would join in if available.

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Hello all! I have Severe CAEBV. I've been steadily worsening probably since about 2014. Recently, all I've been able to do is work from home (my own business), activities of daily living and otherwise bed bound essentially. Now…just in the last couple of weeks working is becoming very difficult. I've just let go of a large client and likely will need to cut back even more. It's possible I may not be able to work at all soon…and no disability insurance. Kicking myself about that one. I've been working with a specialist here in CA who treats ME/CFS, but nothing we have done has helped. I was on an anti-viral called Valtrex for a while and it helped enormously. I even had a day of feeling totally normal but unfortunately, after about 9 months, the EBV became immune to the medication. I apologize, but at this moment, I'm too sick to read through all the information on this thread. Wish I could. So I'll just ask – is there anyone on here that has been Severe with this, meaning, too sick to care for their kids. Too sick to work and has found a lifestyle protocol, including everything / anything – supplements, medications, diet, etc. that has helped them? If so, what is that protocol? And – has anyone who is severe found any doctors anywhere in the US that has helped them? This virus is truly taking over my body at this point. It seems work will be the last thing to go. It has already taken everything else from me and I live alone. Thank you and I will check back for any responses.

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@mrmie

@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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Marianne, your article un the nursing journal was one of the most helpful I have ever read. Your link to the CDC website on Chronic Viral Diseases was an additional very valuable resource. I can’t thank you enough.

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@woot

Marianne, your article un the nursing journal was one of the most helpful I have ever read. Your link to the CDC website on Chronic Viral Diseases was an additional very valuable resource. I can’t thank you enough.

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Thank you @woot for reading my article. I'm glad you found it helpful! My research was done 3 years ago, so I'd like to work on an updated article highlighting the success in alternative treatments. This information is out there, but unfortunately, it is not yet in the conventional medicine world. WIshing you all the best!

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@janejeb

Hello all! I have Severe CAEBV. I've been steadily worsening probably since about 2014. Recently, all I've been able to do is work from home (my own business), activities of daily living and otherwise bed bound essentially. Now…just in the last couple of weeks working is becoming very difficult. I've just let go of a large client and likely will need to cut back even more. It's possible I may not be able to work at all soon…and no disability insurance. Kicking myself about that one. I've been working with a specialist here in CA who treats ME/CFS, but nothing we have done has helped. I was on an anti-viral called Valtrex for a while and it helped enormously. I even had a day of feeling totally normal but unfortunately, after about 9 months, the EBV became immune to the medication. I apologize, but at this moment, I'm too sick to read through all the information on this thread. Wish I could. So I'll just ask – is there anyone on here that has been Severe with this, meaning, too sick to care for their kids. Too sick to work and has found a lifestyle protocol, including everything / anything – supplements, medications, diet, etc. that has helped them? If so, what is that protocol? And – has anyone who is severe found any doctors anywhere in the US that has helped them? This virus is truly taking over my body at this point. It seems work will be the last thing to go. It has already taken everything else from me and I live alone. Thank you and I will check back for any responses.

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I have been suffering from it since 2003. I had a child and was married. I was working as much as I could. I missed so much work. I finally got my disability (2009) my x spent my money and filed for divorce. I hurt so much thru the years and my Dr kept telling me it was my fibromyalgia. After years my dr.ordered hip x-rays, well I have osteo arthritis:no tx.
then constantly complaining if back neck pain (from car accident my when I was 20..after years of hurting helplessly. Pain MGMT is a joke.. I can't go on but you are not in this alone!! I am getting an referral for immune disease specialist! I am on 56.

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