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?

Liked by Marianne, bandolsmom

@jgee18

Thank you so much for your response, I will buy everything today on amazon and start asap, I have been sick for 2 month now and I am getting desperate…

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Hi jgee18 – two things. First, there was a typo in my post. It should have said it took exactly 10 days for me to feel better and know
the protocol was working. Secondly, please let me/us know how it works for you. Also, while you will probably have to go to Amazon
for the Astra Isatis and Monolaurin, the Lysine is pretty darned cheap at almost all drug stores – and on sale alot.
I am so anxious and hopeful for this to work for you like it worked for me. No more fibromyalgia pain, brain fog, aching muscles, extreme
fatigue and feeling like I had the flu all the time. Fingers crossed!

@magbatt

Hi jgee18 – two things. First, there was a typo in my post. It should have said it took exactly 10 days for me to feel better and know
the protocol was working. Secondly, please let me/us know how it works for you. Also, while you will probably have to go to Amazon
for the Astra Isatis and Monolaurin, the Lysine is pretty darned cheap at almost all drug stores – and on sale alot.
I am so anxious and hopeful for this to work for you like it worked for me. No more fibromyalgia pain, brain fog, aching muscles, extreme
fatigue and feeling like I had the flu all the time. Fingers crossed!

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I have been so depressed and upset seeing myself this ill, that I have been crying not understanding what was wrong with me…on July first I woke up with my pelvic, groin, and belly swollen and after the entire lymphatic path all over my body started to swell…we thought it was an allergic reaction…we tried anti allergic meds, diet, antihistamine meds, antibiotics, an aggressive plan of steroids with anti allergics, blood tests, allergies testing, all came back “normal” but the swollen persisted (until this day ,this minute) the pain everywhere, my armpits are swollen and in pain, my breast I can’t even touch it! , my neck, my face, my hands, my feet….and we didn’t get any answers…I thought I got cancer or something terminal! But not positive tests….until they did the EBV test and my antibodies came back super high! I am concerned though cz I haven’t come across anyone with so many days of inflammation…I see cases in pain, with lack of energy…but swollen like me for two months?….I am so depleted, so drained, so many questions…and I feel so ill…I am 36 y/o and I usually wake up and go straight to the gym, I am normally active and full of energy…and seeing myself in a bed for two months and barely starting gathering answers by myself bcz the doctors that I have visited about this they don’t know what I have and they haven’t been sympathetic…so I am trying to survive this by myself…with so many questions and so sick…thank you for your advice I have to do something myself so I will start that plan that you mentioned and see if there is some hope for me…

Liked by Marianne

@jgee18

I have been so depressed and upset seeing myself this ill, that I have been crying not understanding what was wrong with me…on July first I woke up with my pelvic, groin, and belly swollen and after the entire lymphatic path all over my body started to swell…we thought it was an allergic reaction…we tried anti allergic meds, diet, antihistamine meds, antibiotics, an aggressive plan of steroids with anti allergics, blood tests, allergies testing, all came back “normal” but the swollen persisted (until this day ,this minute) the pain everywhere, my armpits are swollen and in pain, my breast I can’t even touch it! , my neck, my face, my hands, my feet….and we didn’t get any answers…I thought I got cancer or something terminal! But not positive tests….until they did the EBV test and my antibodies came back super high! I am concerned though cz I haven’t come across anyone with so many days of inflammation…I see cases in pain, with lack of energy…but swollen like me for two months?….I am so depleted, so drained, so many questions…and I feel so ill…I am 36 y/o and I usually wake up and go straight to the gym, I am normally active and full of energy…and seeing myself in a bed for two months and barely starting gathering answers by myself bcz the doctors that I have visited about this they don’t know what I have and they haven’t been sympathetic…so I am trying to survive this by myself…with so many questions and so sick…thank you for your advice I have to do something myself so I will start that plan that you mentioned and see if there is some hope for me…

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@jgee18 I think it's a great idea to follow magbatt's advice and stay in touch with your doctors as needed. Keep us posted!

@mrmie

@jgee18 I think it's a great idea to follow magbatt's advice and stay in touch with your doctors as needed. Keep us posted!

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I will, thank you all for the help!

Liked by Marianne

It's my understanding that chronic active EBV is at the onset of mono and continues long term. And chronic reactivated EBV is after a time or years of no symptoms following acute mono. Like me, I had acute mono at age 21, and after 6 months was fine. Then at age 52, a perfect storm of stress, grief, insomnia, depression and anxiety triggered a reactivation. It has been reactivated chronically for over 4 years now. My goal is that it can again be in remission so to speak.

@magbatt

Hi jgee18 – two things. First, there was a typo in my post. It should have said it took exactly 10 days for me to feel better and know
the protocol was working. Secondly, please let me/us know how it works for you. Also, while you will probably have to go to Amazon
for the Astra Isatis and Monolaurin, the Lysine is pretty darned cheap at almost all drug stores – and on sale alot.
I am so anxious and hopeful for this to work for you like it worked for me. No more fibromyalgia pain, brain fog, aching muscles, extreme
fatigue and feeling like I had the flu all the time. Fingers crossed!

Jump to this post

Hi Magbatt, sorry to bother you, Im expecting the products today…just to be ready…do you think that feeling worst before feeling better should be expected? How was your experience? Thank you!

@jgee18

Hi Magbatt, sorry to bother you, Im expecting the products today…just to be ready…do you think that feeling worst before feeling better should be expected? How was your experience? Thank you!

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Hi jgee 18,
Wow, getting the stuff today. Perhaps I shouldn't say so because it may raise expectations unrealistically, but I'm excited for you.
I'm not a doctor – I can only speak from personal experience. I'm sensitive to many things, so usually start anything new slowly. In this case, I did not. I started with the full deal right from the get-go and didn't have an issue. The Astra Isatis is an herbal formula (didn't know that until recently) and there could be an allergy issue there, but I had no side effects. I only remember that after ten days I
realized I was feeling so much like my old self. It's probably unrealistic for you or others to expect such a dramatic turn around,
so I would say don't give up if it doesn't happen as dramatically as mine did. There could be other factors involved also. Without a lot
of vitamin D3 I tend to have SAD, so I always have to think about how that may be affecting how I feel. (although, that has also been
much less a factor since I've been on the EBV protocol.)
I'm just so hopeful for you. Keep me/us posted. Magbatt

@magbatt

Hi jgee 18,
Wow, getting the stuff today. Perhaps I shouldn't say so because it may raise expectations unrealistically, but I'm excited for you.
I'm not a doctor – I can only speak from personal experience. I'm sensitive to many things, so usually start anything new slowly. In this case, I did not. I started with the full deal right from the get-go and didn't have an issue. The Astra Isatis is an herbal formula (didn't know that until recently) and there could be an allergy issue there, but I had no side effects. I only remember that after ten days I
realized I was feeling so much like my old self. It's probably unrealistic for you or others to expect such a dramatic turn around,
so I would say don't give up if it doesn't happen as dramatically as mine did. There could be other factors involved also. Without a lot
of vitamin D3 I tend to have SAD, so I always have to think about how that may be affecting how I feel. (although, that has also been
much less a factor since I've been on the EBV protocol.)
I'm just so hopeful for you. Keep me/us posted. Magbatt

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Thank you so much for your help, at this point I have not guide or meds protocol whatsoever, so anything can help, I am stock at home , all swollen after a strong course of steroids and not hope…the only test pending/coming are x rays and ultrasound for tomorrow, my PCP doesn’t know what I have and I am ill and desperate, this is the first time in my life that my body doesn’t get rid quickly of an adverse situation and I am confused and scared without any direction so far, so at least now I have a plan …and I am glad…again, thank you!

@mikla

My PCP visit went great. She was well researched on EBV, CAEBV and the DNA PCR test. She walked through the various antibodies and explained how they might be elevated. She took blood and ordered the DNA test. We’ll see what comes back and take it from there. But I do feel REAL lucky to have a primary doctor that understands this issue so well.

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Yes my dr told me to go and see a shrink ! Finally diagnosed myself and got a blood test shows past infection . This all started in April and although tired I still worked out a lot and had a bit of a social life . Once I stopped working out I became worse ? What is that all about ?
I’m now month 6 and feel worse than ever …. could it be die off symptoms ?

Hi @lori93950 welcome to Connect! Your increasing symptoms must be frustrating.

@mrmie and @jgee18 have experience with EBV and may be able to offer support.

As for you @lori93950, have you been given a meds protocol yet?

@christinemorse

Sounds exactly like me. I have an awesome PCP who listens and acts. Symptoms began before April but then intensified so I knew something serious was wrong. He ran labs, then referred my to a rheumatologist and then to a Oncology/hematologist in the department I actually work in! I had horrible unexplained bruising all over my body, they just appeared. Diagnosis: Chronic Reactivated EPV. I would start with finding a good PCP. If I didn’t have a good Primary Care Doc I would likely have a mental breakdown as well. He told me today that this illness could last up to a year or become Chronic Fatigue Syndrome which lasts forever. I hope to hear more from you as your symptoms seem so similar and I’d like to hear how you’re managing. Blesssings

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@christinemorse would you mind sharing your PCP's information with me? I find some Doctor's will test out of state patients through Skype, email, etc.

Thank you!

@mikla

My PCP visit went great. She was well researched on EBV, CAEBV and the DNA PCR test. She walked through the various antibodies and explained how they might be elevated. She took blood and ordered the DNA test. We’ll see what comes back and take it from there. But I do feel REAL lucky to have a primary doctor that understands this issue so well.

Jump to this post

@mikla would you mind sharing your PCP's information with me? I find some Doctor's will test out of state patients through Skype, email, etc.

Thank you!

@ethanmcconkey

Hi @lori93950 welcome to Connect! Your increasing symptoms must be frustrating.

@mrmie and @jgee18 have experience with EBV and may be able to offer support.

As for you @lori93950, have you been given a meds protocol yet?

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Oh I’m on Valtrex and Xanax and Valium for the mental torture ! Also prescribed Prozac which I just took my first pill …. totally against antidepressants but couldn’t stand the anxiety that comes with this anymore !

@mrmie

@darkmatter53 I personally have yet to come across a doc who truly understands it. I have seen my primary doc, infectious disease, integrative medicine, endocrinologist, and a GI doc. However last week I came across Dr William Rawls. He is an MD who became ill during his forties. He was dx with fibromyalgia, Lyme, and reactivated EBV. His doctor colleages were unable to provide answers. So he spent several years researching and ended up healing himself with lifestyle changes and herbs. I think he is a doctor who actually gets it. I feel he is legit too. I watched his webinar called "EBV Virus and Chronic Fatigue Connection." I don't have the link handy but you can google him or go to his we site RawlsMD.com.

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I found the information, but I can't post links yet, I will in a couple days…

@kpea

I found the information, but I can't post links yet, I will in a couple days…

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Hi @kpea, I'm sorry that your were prevented from posting relevant links to this discussion. We prevent first-time posters from posting links to deter spammers. However I reviewed the links you were trying to post and they were relevant and useful and would like to post them here:

**from @kpea
" https://rawlsmd.com/health-articles/epstein-barr-virus-a-key-player-in-chronic-illness I'm not a fan of WebMd… but was searching what "suppressed immune system" meant I always assumed it was just AIDS. Alas, no. https://www.webmd.com/cold-and-flu/immune-system-disorders#1 I have an autoimmune disorder, and chronic inflammation (on CBC's) but I kept reading after the the 16 symptoms and found that i have 13/16… Like many of the others posting, I'm going to see if diet, better sleep hygiene and exercise help the reactivation issues."

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