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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lynnieb1 | @lynnieb1 | Feb 26, 2018

In reply to @shellr13 "i am in the same boat with my son but now he is 21! We are..." + (show)

Do you suffer from fatigue, brain fog? My sons vision is blurry. Some people have rashes and pain. Just very strange? My son became ill also about 11 months after jaw surgery.

uuiroger | @uuiroger | Feb 26, 2018

In reply to @vinceernst "Hi, my name is Vincent Ernst, I contracted Mono between 2014 and 2015 and have a..." + (show)

@vinceernst

Hi, my name is Vincent Ernst, I contracted Mono between 2014 and 2015 and have a persistent, on and off again feeling of lethargy and general weakness, in addition to other vague symptoms. It is unclear when exactly I contracted the infection since only an EBV anti-body count tested in early 2016 confirmed that the infection had taken place "recently", and perhaps at this stage this had already become chronic. To provide some context, I first started feeling unwell in Autumn 2015, when I noticed that I was frequently feeling sick, but not seriously ill with any fever or severe symptoms. It was like a mild cold every two or three weeks. During this time period I was completing senior year of high school as well as studying for my IB Diploma and I didn't miss a single day of school. I also performed as a DJ at parties, whilst sick and also drinking alcohol. This stress never seemed to impact my symptoms. This phase lasted until my 18th birthday, in mid February 2016 and suddenly ceased for some time until early may when I contracted a bad flu and was then hospitalized with double Pneumonia, thus missing my Final HS Exams. In late 2016 there was a second, three month phase where my symptoms worsened and didn't go away. I was treated homeopathically with 2LEBV, antiviral, immuno-stimulating drug, as well as other supplements. After taking some newly prescribed probiotics at the end of this three month period, I miraculously recovered within a few days. However, this year I still got ill frequently, always preceding or following events of high stress and alcohol consumption. I also got Pneumonia again, however far less severe than the first time. As of this writing where I am again feeling ill, there is no measurable fever, only a little yellow phlegm and a feeling of mild depression, malaise, light headedness, feeling hot and cold as well as a yellow discolored tongue. Every doctor denies that I have a persisting infection, except the homeopathic one who treated me, with temporary success. I might even describe myself as a hypochondriac, feeling scared and stressed of possible sources of infection since the events of the last two years. In my childhood I was rarely Ill, about once or twice a year and now I frequently have 4-7 day periods of feeling unwell, and every now and then serious illnesses such as pneumonia. I'm 19, attending university in Florida and I'm afraid that this will have a severe impact on my future adult life. A psychosomatic doctor even diagnosed me with "suspicion of personality disorder, namely recurring, currently repressed, depression" which is, excuse my French, bullshit. I feel a little helpless, but I'm not willing to give up and I want to improve my ok-mediocre quality of life before it gets worse and turns into CFS!

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@vinceernst your case sounds similar to mine as well as @jonnybear619 's. Sounds like you are getting bacteria in if you're getting one pneumonia. I too have had walking pneumonia twice as an adult and countless infections (doctors only recently started testing my sputum to see if the infections are bacteria). I replied to @jonnybear619 on this thread as he says he's getting pleghm after physical activity. Same for me and I was also getting infections after social drinking with friends on weekends. I have low immunoglobulin levels which might be part of the problem as I've noticed going into crowded places or airplanes with lots of people I can get systems of infections starting even if I'm not drinking. Wondering if you have had your immunoglobulin levels tested and functionality of your immune system such as t-cells, b-cells, lymphocytes, neutrofils, etc.?

uuiroger | @uuiroger | Feb 26, 2018

In reply to @donnamarie "Hello to all. I'm 56 years old. i've had Lyme disease 23 years -not diagnosed until..." + (show)

@donnamarie

Hello to all. I'm 56 years old. i've had Lyme disease 23 years -not diagnosed until 12 years later. Infectious disease specialist iNY diagnosed me with Chronic Epstein barr. Moved from MY to SW FL 8 years ago. Always positive for Epstein barr and mononucleosis. Have seen a DO/Naturopath 3 hours away since June 2016. I can't find an MD where I live for help. I've been to at least 15-20, including infectious disease. I have been treated as if I'm looking for attention, a s if I'm deceitful, a hypochondriac, that I'm mentally ill and there have been comments and questions about my marriage with my husband sitting right next to me, holding my hand, obviously upset and scared for me. Please don't think that I'm arrogant but I've had to become my own advocate due to all of the above and this is with files of documented evidence of how very sick I am and I know something is very wrong with me.DO doesn't accept insurance, has pushed all of his own products and in house servicest, hasn't helped me, has helped himself to housands of dollars that I can't spare, not going back. I have so many ongoing infectious bacterial and viral, mold toxicity etc but just sticking with Epstein barr. I'm so scared, I need excellent medical care by a kind and patient MD but I don't know where to I turn. I so much want to be the energetic, vivacious woman that I used to be. I don't understand why MDs, family and friends etc would ever think that those of us in this condition are really not sick. And nobody has to tell me or test me to confirm how ill I am, I can feel it inside the body that I have had for my entire life. If anyone can please give me direction I would be so grateful. 2013 memory testing showed decline in cognitive function. Beginning in early 2014 began having black out episodes while driving. December 2014 had to stop working and apply for disability, grateful to God I received it in 6 months. Stopped driving. June 2015 began forgetting episodes in my life, my husband had to stop working because I was falling, losing conciousness, much more. December 2015 became totally exhausted. January 2016 rapid decline, always sick (pneumonia June, July, August and bronchitis 4X). January 2017 stopped being able to take care of my home, can't even walk one block, so tired, so desolate, spend most of my time on the couch or in bed. 2 weeks ago, unable I can't eat anymore, abdominal pain so bad, bloating,. CT scan normal Vomiting began a year ago. Gastro did his tests, his diagnosis I'm nuts. And he knows that I have severe gastroparesis and a serious small bowel to large bowel motility issue.I began entire body shaking about 3 weeks ago, no changes in meds. Also I feel really strange as if something is frightening is happening in my brain. Its hard to explain. My entire body is in pain. I've no stranger to pain but this is different. All my lymph nodes are swollen and I keep testing + for dehydration, among so much more. Difficulty using my hands. EMG testing i2006 abnormal, automatic system testing abnormal 2009. Can anyone please help me? I feel alone and confused. I am seeing my Neurologist next week. He is an excellent M.D. Thank you all for your time & patience.

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@donnamarie has your doctors ever tested your immunoglobulin levels especially if you are getting bacteria and pneumonia infections?

cummings3 | @cummings3 | Feb 26, 2018

In reply to @cummings3 "My son is 17yrs. old and a senior in high school. He got the Epstein Barr..." + (show)

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?

Justin McClanahan, Moderator | @JustinMcClanahan | Feb 26, 2018

In reply to @michellebelle "Having EBV is very frustrating. I have been battling this for more than six months. I..." + (show)

Hello @michellebelle,

I am not a medical professional and cannot offer medical advice, however, I am concerned about the use of hydrogen peroxide in an IV. I will continue to research this topic, but have found no credible medical sources that say this is an approved medical treatment. Due to the nature of hydrogen peroxide and its mechanism of action, I am deeply concerned about using it intravenously. I will continue to research this topic to provide sources, but highly recommend you discuss any new treatment with your medical provider.

Justin McClanahan, Moderator | @JustinMcClanahan | Feb 26, 2018

In reply to @lisajensen "I have tried 2 UV and Ozone treatments like what you describe. I hope to start..." + (show)

Hello @lisajensen,

Would you mind sharing a bit more about ozone treatments? I have been researching some of the treatments discussed in this thread and have concerns about the alternative therapies and the dangers that may go with them. From my own research, I found that ozone therapy in regards to external use has been used for certain injuries. You can read more about that here, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3312702/. However, I have concerns about ozone therapy in regards to IV ozone therapy. Have you discussed this treatment with your medical provider?

Terri Martin, Volunteer Mentor | @windwalker | Feb 27, 2018

In reply to @kschmoyer9 "Hi EBV sufferers! I wish I had seen this earlier, but I just came across it..." + (show)

@megan123 Hi Jennifer. The EBV is diagnosed through bloodwork. I tested positive for having it in my past. I don't ever recall being sick like Mono would indicate except a couple of bouts with pneumonia.

lisajensen | @lisajensen | Feb 27, 2018

In reply to @lisajensen "I have tried 2 UV and Ozone treatments like what you describe. I hope to start..." + (show)

If you Google UltraViolet Ozone Therapy it explains that it was invented in the 1920s so has been around for years. It is very safe if done properly. Whether it can actually treat viruses such as Epstien Barr... I don't know. I am trying it out. I have stopped talking to my doctor about my condition because he is adamant there is nothing that can be done. Many Naturopath nurses know about this treatment very well. Thank goodness I found a good Naturopath in Prescott Az where I live.

lisajensen | @lisajensen | Feb 27, 2018

In reply to @michellebelle "What are Ozone treatments?" + (show)

If you Google UltraViolet Ozone Therapy you can read about it. It has been around since the 1920's and many Naturopath nurses know how to do the IV work.

lisajensen | @lisajensen | Feb 27, 2018

In reply to @lisajensen "I have tried 2 UV and Ozone treatments like what you describe. I hope to start..." + (show)

Also...John Bishop posted really good information on it 2 days ago including video.

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