1. < Infectious Diseases

Treatment for chronic Epstein-Barr virus (EBV)

Posted by cummings3 @cummings3, Jan 23, 2017

My son has been suffering with Epstein-Barr virus (EBV) 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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tricia7 | @tricia7 | Sep 18, 2023
In reply to @ring1954 "Have you had a CT scan done? I went through something similar and through a CT..." + (show)
@ring1954

Have you had a CT scan done? I went through something similar and through a CT scan they discovered enlarged lymph nodes throughout my body. Had bone marrow and lymph node biopsies and tons of different blood work. Never remember having mono but somehow the EBV virus was reactivated and affected my liver and spleen. Lost a lot of weight suddenly and had two bouts of jaundice. Hope you get this resolved. It took many hematologists to figure my case.

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I passed out and hit my head about a year ago. I spent two days in the hospital. They ran bloodwork and did a CT Scan. I was told everything was normal. When I went home and continued to get worse that’s when I saw a Function Medicine specialist. They ran the tests for EBV which came back positive with very high numbers.
I haven’t been able to get this virus into remission and I just continue down this road of exhaustion. I also still had a couple of markers for Lyme in my blood which I was told don’t really mean anything since there were only two. I’ve pretty much given up and just try to understand my new normal and do the best I can.
I was told early on I was depressed and offered antidepressants. I felt my depression was stemming from my life falling apart from being sick. I also had severe anxiety, and again it felt related to the illness. Now that I’ve accepted my new normal, I still feel sadness, but it’s not the same as depression and anxiety. It’s one day at a time and acceptance has been a slow process, but it helps deal with the pain of what my life has become. Some days are better than others.

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1 reply
ring1954 | @ring1954 | Sep 18, 2023
In reply to @tricia7 "I passed out and hit my head about a year ago. I spent two days in..." + (show)
@tricia7

I passed out and hit my head about a year ago. I spent two days in the hospital. They ran bloodwork and did a CT Scan. I was told everything was normal. When I went home and continued to get worse that’s when I saw a Function Medicine specialist. They ran the tests for EBV which came back positive with very high numbers.
I haven’t been able to get this virus into remission and I just continue down this road of exhaustion. I also still had a couple of markers for Lyme in my blood which I was told don’t really mean anything since there were only two. I’ve pretty much given up and just try to understand my new normal and do the best I can.
I was told early on I was depressed and offered antidepressants. I felt my depression was stemming from my life falling apart from being sick. I also had severe anxiety, and again it felt related to the illness. Now that I’ve accepted my new normal, I still feel sadness, but it’s not the same as depression and anxiety. It’s one day at a time and acceptance has been a slow process, but it helps deal with the pain of what my life has become. Some days are better than others.

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It is so depressing to not get the answers or a doctor that does not pursue further for a diagnosis. I spent over a year going to so many different doctors. One thing I can assure you of is to seek out the Lord and trust He will take care of you. It will help lessen your worries and insomnia. I will pray for you to find answers and support to get healthy again.

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1 reply
tricia7 | @tricia7 | Sep 18, 2023
In reply to @ring1954 "It is so depressing to not get the answers or a doctor that does not pursue..." + (show)
@ring1954

It is so depressing to not get the answers or a doctor that does not pursue further for a diagnosis. I spent over a year going to so many different doctors. One thing I can assure you of is to seek out the Lord and trust He will take care of you. It will help lessen your worries and insomnia. I will pray for you to find answers and support to get healthy again.

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Thank you. I’ve actually been praying and seeking the Lord but sense nothing. I’ve been blessed to have many praying for me to no avail. I don’t understand why this is happening. I’ve been doing my best to try and accept this because it doesn’t appear to be any medical help or answers available. I’m trying to get strong enough to have some sort of life, but it’s exhausting and discouraging. Insomnia and night sweats are one of the the worst parts. That’s when the depression tries to set in, but by accepting this and trying to learn from it, I'm able to at least get a little emotional relief.
I wish more funding and research was available to research this. It’s real and I know many suffer with CEBV.

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milanocookie | @milanocookie | Sep 18, 2023
In reply to @colleenyoung "How are you doing, @milanocookie? Did you get to see an infectious disease specialist?" + (show)
@colleenyoung

How are you doing, @milanocookie? Did you get to see an infectious disease specialist?

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They ended up denying my referral which I’m shocked. I’ve never been denied a specialist referral. He seemed smug and said it’s most likely a reinfection and not chronic based off my symptoms. I’d still like to have answers as to why I got it again and why numbers are higher. I have a neck ultrasound soon to check my lymph nodes. I prefer not to do a Ct since I’ve done four in the last four years for other issues. Any suggestions on what else I should try?

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lkl | @lkl | Nov 24, 2023
In reply to @cummings3 "My son has had every possible test done by immunologist, infectious disease, internal medicine and neurology...." + (show)
@cummings3

My son has had every possible test done by immunologist, infectious disease, internal medicine and neurology. The only conclusion that any of these Doctors came up with, was the neurologist. She said that his autonomic nervous system has been damaged from the EBV, which is causing..... adrenal fatigue, orthostatic hypotension, heart rate variability issues, GI issues, headaches. She started him on Alpha Lipoic Acid back in November to reverse the damage and has been experimenting with drugs like.... Mestinon, Midodrine, Florinef and Bethanechol. He couldn't take the Mestinon, due to loss of appetite and loosing weight. Nor could he take the Midodrine, due to it raising his blood pressure too high. She has now started him on the bethanechol and will be adding in Northera soon. He still takes the Florinef, as well. His fatigue has gotten even worse than it was when we brought him home from school and I didn't think that was possible. He has no life at 18.... doesn't feel like doing anything and never leaves the house, because he's so week and tired. He just never feels well. His Neurologist keeps telling us that it will take time with the meds, but she is confident that she can help him. She has a proven history of treating past patients with the same illness. It's hard to be optimistic about any treatment at this time, because he has been dealing with doctors and the runaround for over 2 years now. How are you doing with the illness?

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So sorry to hear he’s going through this. Are there docs you can recommend or articles? This illness is new to me- recently diagnosed. I feel crippled- all joints ache. Had stressful previous job- now retired. I’m at a loss. Is this disease contagious to others? Thank you!!

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inminn | @inminn | Feb 29 8:37am
In reply to @quirkygirl35 "Hello Sue. Wow yeah reading Anthony Williams book is how I found I might have EBV...." + (show)
@quirkygirl35

Hello Sue. Wow yeah reading Anthony Williams book is how I found I might have EBV. I T\also had been tested
( thoroughly because I'm also a childhood cancer survivor) for 20+ years and I was apparently ok or 'just getting older' ( love that one). I had to order my doctor to have my blood antibodies tested here so I could finally valid my suspiscon.
So yes I'm eating healthy, lots of natural supplements - I love using the 'healing foods an herbs' list to create my own recipes. What is is/are Asea redox molecules?
Molly

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I don’t know if this will be of any help, and it may not be what one wants to hear, but I, too was a childhood cancer survivor have been struggling with a host of mysterious and progressive health issues including neuropathy. I thought that the EBV+pneumonia that dramatically altered my health suddenly many years ago may have lead to chronic EBV, among other theories.
It turns out what I actually may have is the well-studied and documented RICAD (Radiation induced Coronary Artery Disease) with Chemotherapy induced neuropathy. Despite the names, damage is widespread and not limited to heart and nerves. Treatments are available if diagnosed early but not if delayed. Please look into it if you received radiation, especially if to the chest and neck area, or if you received both radiation and chemotherapy.
I have gone undiagnosed despite early warning signs of first neuropathy, then fibromyalgia, chronic fatigue, and liver and lung damage and now extensive heart damage.
I would not want anyone to go through the *heck* both myself and my spouse have experienced, desperately seeking answers for over 25 years.

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peachieb | @peachieb | Apr 8 3:36pm

I too have had to deal with this for many years and are encouraged to hear what treatments others have found helpful. Thank You

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aldersage | @aldersage | Apr 24 10:52pm
In reply to @eveei1986 "I got Covid when I was 4 months postpartum with my only child. It was an..." + (show)
@eveei1986

I got Covid when I was 4 months postpartum with my only child. It was an incredibly stressful time and the Covid reactivated Epstein Barr virus. I have been ill for 16 months. It has caused Hashimoto’s and celiac. All most doctors have wanted to do was put my on levothyroxine and call it a day. I found a functional medicine doctor who has given me neurological exercises and put me on a homeopathic protocol specifically for Epstein Barr Virus. He also has me taking a repairative digestive powder in the morning and at night (glutamine, aloe, ginger, etc), monolauric acid, l-lysine, IV glutathione, a supplement to support my B-cell/th2 response (my autoimmune response is Th1 dominant), vitamin D and a cream that absorbs through my skin and supports my adrenals during the day as well as another supplement to support my adrenals at night. They have me on an autoimmune paleo diet during this 8 week protocol, after which we will be adding eliminated foods back in one at a time. They have told me that gluten is often not okay for anyone with autoimmune issues or chronic epstein barr virus to consume again because it is so inflammatory. Since Covid, there has been a huge increase in reactivated Epstein Barr virus. EBV is the root cause of many adult chronic health problems. My best suggestion for others suffering from this - find an experienced functional medicine doctor with knowledge on EBV in your area. Since starting the protocol my body has been purging. It is not easy but I have a young daughter and I want to be there for her, I want to raise her. The goal is to get the EBV to go into latency again. Stress management, good sleep, nutrition and detox are all part of maintenance once the chronic reactivated EBV is addressed. If it is never addressed, it will continue to wreak havoc on you. Look into Dr. Kharrazian’s books for good info. Good luck on your journey!

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I hope your healing journey is going well. I was wondering if you could share the homeopathic protocol for EBV when hyou have time, thakn you

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