Treatment for chronic epstein barr

Posted by cummings3 @cummings3, Jan 23, 2017

My son has been suffering with this for over a year. I have taken him to an immunologist and infectious disease doctor with no answers. He is always tired and never feels well. He has relapsed with Mono twice in the last 10 months.

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@lisajensen

@nataliem
I understand your frustration about finding the right supplements. I have not posted anything on this sight in a long time because I just find myself saying the same things over and over. It is really hard as a new comer to sift through the huge amount of information that everyone has posted. Here is a list of supplements that have helped me the most. Also… Exercise! You have to try your hardest to get out of bed and walk, or hike or do at home yoga, lift weights, what ever you can find that you enjoy doing. I feel so much better when I force myself to move. My symptoms are fatigue, severe brain fog, swollen lymph glands and a pain on my left chest that comes and goes. I first had Mono about 15 years ago so have been battling this since then, like most everyone in this blog. Here are supplements that help me a bit:
B12 / B6
L-Lysine
Alpha Lipoic Acid
Zinc
D3
C
Monolauren helps many, I am thinking about trying it again.
I hope this helps.

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Yes, there are huge amounts of information, and i admit that I have never read through all thirty-something pages. It's just daunting. I was exercising and it was helping me, but suddenly the fatigue came back so heavy that any exercise at all made me fold like a house of cards. I can't understand it. I need to start over and just do a little bit and try to build back to where I was. Thank you for re-posting your supplements. I have tried most of them, but I will add the others. I have noticed that any stress at all sends me back to square one, so possibly there is a large mental component to this illness. Has anyone else noticed this?

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@nataliem

Yes, there are huge amounts of information, and i admit that I have never read through all thirty-something pages. It's just daunting. I was exercising and it was helping me, but suddenly the fatigue came back so heavy that any exercise at all made me fold like a house of cards. I can't understand it. I need to start over and just do a little bit and try to build back to where I was. Thank you for re-posting your supplements. I have tried most of them, but I will add the others. I have noticed that any stress at all sends me back to square one, so possibly there is a large mental component to this illness. Has anyone else noticed this?

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Yes, it absolutely effects your neurological state along with your body. I finally got one of the many specialists I see to look at EBV being the cause of most of my issues and symptoms. He is sending me for a DNA PCR test & referring me to John's Hopkins University. After having reactivated EBV for over two years with every test coming back higher he started listening.

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A quick note to suggest taking K2 with your D3. When my dermatologist learned I was taking D3, she told me I needed the K2 to help absorb the D3. Do you take Zinc daily?

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@jbri

A quick note to suggest taking K2 with your D3. When my dermatologist learned I was taking D3, she told me I needed the K2 to help absorb the D3. Do you take Zinc daily?

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Yes zinc daily.

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@mblack

Yes, it absolutely effects your neurological state along with your body. I finally got one of the many specialists I see to look at EBV being the cause of most of my issues and symptoms. He is sending me for a DNA PCR test & referring me to John's Hopkins University. After having reactivated EBV for over two years with every test coming back higher he started listening.

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My EBV nuclear antigen ab,IgG is >600.0 U/mL which seems high based on positive is >21.9 but my doctors say it’s nothing. Been on disability almost 3 years for severe fatigue, legs tremors and weakness. Still no answers. Anyone higher than >600.0 U/mL?

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dquick,
Yes my EBV Antigen ab has been over 700 for three years. I keep expecting I would see the numbers change but they don't seem to. I was diagnosed over three years ago and my test results don't change much. I have good days and not so good days. Not as bad (bed ridden) as I was four years ago but never back to my old energetic self. MBS

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Looks frightening…any thoughts?

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@grasshopper123

Looks frightening…any thoughts?

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Hello @grasshopper123, You will notice that we merged your new discussion into the Treatment for chronic epstein barr discussion so that you can meet @dquick, @mblack, @michellebelle, and other members discussing test results and treatments for chronic epstein barr disease. If you click the VIEW & REPLY button at the bottom of the email notification it will take you to the discussion.

I think most test results are not really written with patients in mind and can be confusing at the least. What about the test results looks frightening to you? Have you discussed the results with your doctor?

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Hello… Thankyou. The numbers seem so much higher than the “normal” range. I haven’t been tested for a year until this last test. I’m confused as to why she is calling it chronic. Isn’t there a specific test to determine this?

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@jenchaney727

Hi @cummings3! I too know how frustrating it is. I had an infectious disease doctor laugh in my face and tell me to stop going to doctors because she believes there is no such thing as chronic EBV. My PCP recently gave me this protocol (below are her direct notes), which she says several patients have had great success with. I haven’t started it yet due to other GI issues, but I’m planning to try soon. It’s all natural supplements, so I’m comfortable sharing, but you may want to check with your doctor and make sure no conflicts with anything else your son might be taking.

Chronic Epstein Barr Virus Infection:
– This is a reactivation of an old EBV viral infection and is not contagious.
– Discussed starting on sambucus or sambucol 2 tsp 3x day for a couple of months or one of the lozenges 3x/day, then can go down to once daily for one more month which has been shown to help shorten viral duration and decrease severity of symptoms in certain viral infections including EBV.

– Vitamin C is a cofactor in the viral immune system – can take as much as 900-1000 mg once-twice daily.

– Quercetin has studies showing its ability to help the body fight the early antigen of the epstein barr virus. Dose = 1000-1200 mg daily

– N-Acetyl Cystine (NAC) is an antioxidant that can help with nerve function and memory. Dose : 600 mg once daily

NOTE: There is a combination product called Di-Hist or Nu-Hist that has Quercetin, NAC and Vitamin C in it which is convenient but slightly more expensive than putting together own ingredients. Can be gotten from Apothecary shop or online.

– To help with fatigue, discussed using 5 gm (5,000 mg) ribose 3 a day for 3 weeks, then 5 gm twice a day for 6 weeks to see the full clinical effect. We have patients get a 280 gm container of ribose (Corvalen from Douglas labs) as a therapeutic trial. http://www.endfatigue.com/tools-support/D-ribose.html – can order on line from this website (and the endfatigue.com has a good write up of some of the research) or can go to amazon and put in Corvalen or D-ribose by Superior Fuel.

– Discussed may take up to 3 months (or longer) for full effect. Once feeling better, slowly stop the medications (stop the quercetin first, then NAC, then vitamin C, then the sambucol- as an example). Would not stop the supplements till has been feeling well for 4 weeks.

@kanaazpereira, @suesiegel, @arriba, @aman_23_23, @copiela, @jatl, @cheryldotson

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Have you guys found anything else to relieve the EBV symptoms?? How are you doing now? Did the supplements help?

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@johnbishop

Hello @grasshopper123, You will notice that we merged your new discussion into the Treatment for chronic epstein barr discussion so that you can meet @dquick, @mblack, @michellebelle, and other members discussing test results and treatments for chronic epstein barr disease. If you click the VIEW & REPLY button at the bottom of the email notification it will take you to the discussion.

I think most test results are not really written with patients in mind and can be confusing at the least. What about the test results looks frightening to you? Have you discussed the results with your doctor?

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Where can I find the Chronic Epstein Barr virus discussion or is this it?

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@johnbishop

Hi @cedar234, Welcome to Mayo Clinic Connect. I have no medical background or training but from what I've read there is no vaccine to treat EBV. I've never heard of EBV leading to cancer. Here is some information about the test, what the results mean and how it's treated that may provide more information for you.

Epstein-Barr Virus (EBV) Test: https://www.healthline.com/health/epstein-barr-virus-test

May I ask where you heard or read EBV would lead to cancer?

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Bloodjournal.com (non-Hodgkins lymphoma)

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@mblack

Yes, it absolutely effects your neurological state along with your body. I finally got one of the many specialists I see to look at EBV being the cause of most of my issues and symptoms. He is sending me for a DNA PCR test & referring me to John's Hopkins University. After having reactivated EBV for over two years with every test coming back higher he started listening.

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Can I as who you saw at Hopkins??

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@sswonger

Where can I find the Chronic Epstein Barr virus discussion or is this it?

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Hi@sswonger
https://connect.mayoclinic.org/discussion/treatment-for-chronic-epstein-barr/
Here is a link. Or you can click on my profile and click on any of my comments since they are mostly linked to the EBV discussions. ….~Marianne~

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@sswonger

Where can I find the Chronic Epstein Barr virus discussion or is this it?

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Hi @sswonger, welcome to Mayo Clinic Connect. I thought you and other members like to have an inventory of the discussions related to Epstein-Barr Virus (EBV).

– Seeking treatment and evaluation https://connect.mayoclinic.org/discussion/seeking-treatment-and-evaluation/
– Dual Diagnosis of CLL and Acute Epstein Barr Virus – https://connect.mayoclinic.org/discussion/dual-diagnosis-of-cll-and-acute-epstein-barr-virus/
– Relapsed CNS Primary Brain Lymphoma – Linked with Epstein-Barr Virus? https://connect.mayoclinic.org/discussion/relapsed-cns-primary-brain-lymphoma-linked-with-epstein-barr-virus/
– Is chronic reactivated EBV different from chronic active EBV? https://connect.mayoclinic.org/discussion/is-chronic-reactivated-epstein-barr-virus-different-from-chronicle-ac/
– Treatment for chronic epstein barr https://connect.mayoclinic.org/discussion/treatment-for-chronic-epstein-barr/
– Doctor Recommendations for Chronic active Epstein Barr virus (CAEBV) https://connect.mayoclinic.org/discussion/ebv-chronic/
– Epstein Barr Nuclear AG AB IGG result of over 600 https://connect.mayoclinic.org/discussion/epstein-barr-nuclear-ag-ab-igg-result-of-over-600/
– Diseases caused by Epstein-Barr Virus https://connect.mayoclinic.org/discussion/epstein-barr/
– Whether or not to treat epstein barr symptoms https://connect.mayoclinic.org/discussion/whether-or-not-to-treat-epstein-barr-symptoms/
– Chronic EBV – Help https://connect.mayoclinic.org/discussion/chronic-ebv-help/
– EBV? or Adrenals? https://connect.mayoclinic.org/discussion/ebv-or-adrenals/
– Chronic EBV: to go or not on a trip? https://connect.mayoclinic.org/discussion/to-go-or-not/
– Traveling with Chronic EBV. Any tips? https://connect.mayoclinic.org/discussion/traveling-with-chroniv-ebv-tips/
– EBV functional doctors on Skype https://connect.mayoclinic.org/discussion/ebv-functional-drs/
– What / how to test for reactive or chronic Ebstein Barr https://connect.mayoclinic.org/discussion/what-how-to-test-for-reactive-or-chronic-ebstein-barr/
– My 7 year old has EBV and TB https://connect.mayoclinic.org/discussion/my-7-year-old-has-ebv-and-tb/
– EBV – How do you stay healthy? https://connect.mayoclinic.org/discussion/ebv/

@sswonger, I also noticed that you wished to post a URL to a web resource with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam, so allow me to post it here.

A prospective study of Epstein-Barr virus antibodies and risk of non-Hodgkin lymphoma http://www.bloodjournal.org/content/bloodjournal/116/18/3547.full.pdf

sswonger, do you have EBV? Has it developed into non-Hodgkin's lymphoma?

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