1. < Infectious Diseases

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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jgee18 | @jgee18 | Sep 26, 2018
In reply to @magbatt "Hi jgee18 - two things. First, there was a typo in my post. It should have..." + (show)
@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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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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1 reply
magbatt | @magbatt | Sep 26, 2018
In reply to @jgee18 "Hi Magbatt, sorry to bother you, Im expecting the products today...just to be ready...do you think..." + (show)
@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

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2 replies
jgee18 | @jgee18 | Sep 26, 2018
In reply to @magbatt "Hi jgee 18, Wow, getting the stuff today. Perhaps I shouldn't say so because it may..." + (show)
@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

Jump to this post

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!

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lori93950 | @lori93950 | Oct 14, 2018
In reply to @mikla "My PCP visit went great. She was well researched on EBV, CAEBV and the DNA PCR..." + (show)
@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 ?

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Ethan McConkey, Moderator | @ethanmcconkey | Oct 14, 2018

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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2 replies
figjam | @fgjam | Oct 20, 2018
In reply to @christinemorse "Sounds exactly like me. I have an awesome PCP who listens and acts. Symptoms began before..." + (show)
@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!

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figjam | @fgjam | Oct 20, 2018
In reply to @mikla "My PCP visit went great. She was well researched on EBV, CAEBV and the DNA PCR..." + (show)
@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!

REPLY
lori93950 | @lori93950 | Oct 23, 2018
In reply to @ethanmcconkey "Hi @lori93950 welcome to Connect! Your increasing symptoms must be frustrating. @mrmie and @jgee18 have experience..." + (show)
@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 !

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kpea | @kpea | Nov 2, 2018
In reply to @mrmie "@darkmatter53 I personally have yet to come across a doc who truly understands it. I have..." + (show)
@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...

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 2, 2018
In reply to @kpea "I found the information, but I can't post links yet, I will in a couple days..." + (show)
@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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