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.

Liked by mapchap, pijax, lioness, nacc ... see all

@shellr13

i am in the same boat with my son but now he is 21! We are going back today to get him tested for the 5th time in 3 years. Always tests positive. He does heavy lifting at work and now his spleen is hurting. If someone can help us It sure would mean the world to me. He is too young to stay so run down.

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Does anyone is this group have titanium implants in their body. My son 25 year old son became ill with what drs are saying is chronic EBV his numbers stay elevated. Saw a recent post on another sight about high EBV numbers and people with titanium implants. My son had double jaw surgery 2 years ago and has screws and plates in his jaw. His surgeon said no his constant fatigue, brain fog and blurry vision are not from his surgery but I have a inking feeling it is related. His immune is under attack.

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@michellebelle

What are Ozone treatments?

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My son started ozone treatments 2 weeks ago, hasn’t felt any difference. His holistic Dr is suggesting 10 treatments, one a week. Very expensive and experimental but several drs I spoke to said it’s safe as long as proformed by Dr that has experience doing it. It is an IV therapy with ozone and light supposedlcleaning and oxygenating blood. I will keep posted if we notice any help. I stated in an earlier post does anyone have titanium dental or jaw implants?

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Thanks for posting about the Ozone treatments. I will look further into the treatments.

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They hook you up to an IV. They fill a tube full of your blood and run it through the Ultra violent light and Ozone oxygenation and flow it back in. They do this about 3 times each treatment. Very safe and only takes about 20 minutes. Not sure yet if it will work!!

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@shellr13

i am in the same boat with my son but now he is 21! We are going back today to get him tested for the 5th time in 3 years. Always tests positive. He does heavy lifting at work and now his spleen is hurting. If someone can help us It sure would mean the world to me. He is too young to stay so run down.

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For what it is worth, I had spine surgery March 2017. Titanium rods. In December, I wake up with can only be described as a full blown rheumatoid arthritis flare. Excruciating pain in every bone and joint, except my neck and back. Blood test show negative for rheumatoid arthritis, but positive for Epstein Barr. I'm 61. I've been a Nurse for 40 years. I find it very, very strange that I have not been exposed to mono in forty years of nursing. I have my last appointment with the neurosurgeon March 27. I'll ask him about the immune system and this surgery I had, causing mono.

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@jonnybear619

How has your son progressed? I am 30 and have been sick for 10 weeks. I had mono at 13yrs old ebv. Have always been tired alot but now i struggle to do basic day to day things like go to work and stay sharp. Each time I do anything physical next day i have phlem sore throat congestion and feel horrible. I use to lift weights box played college football. I’m scared for my future will this ever be gone? What do i do besides rest? I pray no one has to go through this. I sleep 9 10 11 hours and still exhausted my job and happiness are in jeopardy. I just want be back to normal. I am sinking lower every day and compared to stories i see of years of this struggle i dont think i could do that. I am not able to live life right now and it selfishly breaks my heart. Please help me.

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@jonnybear619 I just came across this posting and you're situation sounds eerily similar to mine. I've never (that I'm aware of) had mono but have had an EBV infection (based on labs in 1999). I also have had low IgM immunoglobulin levels since 1998. Last year I found out I also have low IgG subclass 1 too. In addition to the general fatigue symptoms and struggle to do day to day activities, including work and brain function I too have been very active most of my life but decades ago i starred to notice I would feel like I was catching a cold after running. Now when I run or do anything physical (hiking, mt biking, running, cleaning my condo, walking around shooting photos for hours, etc) my sputum will turn yellow or brown in the day after doing such activities. I was wondering if you also have low immunoglobulin levels? Also if anyone else on this thread has low immunoglobulins levels please comment. My doctor has been testing my sputum when I start to get signs of a respiratory tract infection and just in last year and half I've had 6 positive bacteria infections – 4 or 5 different types of bacteria. For many years now (over a decade) I've felt like I can even tell the difference when I get over one infection and when the next one starts since any physical activity will start symptoms again. My doctors (and I've been to probably 50 + specialists on my life since these symptoms first started in 1998) can't seem to figure out what to do and really what is causing this. They think the low immunoglobulin levels are a factor but they offer no answers to making me feel better and stop the infections. I have recently ran across research by Dr Nieman at App State University that shows exercise can suppress the immune system and I asked him if he has done any studies on individuals with immunodeficiencies or EBV infections but he hasn't. He said that such research might be valuable. If possible would you be willing to have a conversation off this feed as there's so many more specifics that I think we should discuss to potentially help us get answers.
Thanks!
Roger

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@cummings3

My son is 17yrs. old and a senior in high school. He got the Epstein Barr virus 14 months ago, which caused Mono with another relapse with it a month later. His doctor made him homebound from school for 4 months, due to the severity of this. He has been to see an immunologist and infectious disease doctor, but no help in solving this puzzle. Since diagnosed with Chronic Epstein Barr, he’s been constantly fatigued, just doesn’t feel great half of the time, and is constantly contracting other infections and viruses.

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@cummings3 has your son's immunoglobulin levels been checked by an immunologist? Have these tested for bacteria when he gets infections? Please see my reply to @jonnybear619 below about my case.

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@shellr13

i am in the same boat with my son but now he is 21! We are going back today to get him tested for the 5th time in 3 years. Always tests positive. He does heavy lifting at work and now his spleen is hurting. If someone can help us It sure would mean the world to me. He is too young to stay so run down.

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I'm afraid the your body maybe reacting to the titanium and your getting a false positive of EBV. My son took a different type of EBV test and it came back negative for EBV. There are plenty of people complaining of chronic fatigue and brain fog that have titanium in their body. Scary stuff. Could be causing the immune system to react.

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@shellr13

i am in the same boat with my son but now he is 21! We are going back today to get him tested for the 5th time in 3 years. Always tests positive. He does heavy lifting at work and now his spleen is hurting. If someone can help us It sure would mean the world to me. He is too young to stay so run down.

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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.

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@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.?

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@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?

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@cummings3

My son is 17yrs. old and a senior in high school. He got the Epstein Barr virus 14 months ago, which caused Mono with another relapse with it a month later. His doctor made him homebound from school for 4 months, due to the severity of this. He has been to see an immunologist and infectious disease doctor, but no help in solving this puzzle. Since diagnosed with Chronic Epstein Barr, he’s been constantly fatigued, just doesn’t feel great half of the time, and is constantly contracting other infections and viruses.

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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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@michellebelle

Having EBV is very frustrating. I have been battling this for more than six months. I had heard some time ago about an Ultra Violet treatment that my girlfriend had over 25 years ago. It took me a long time to finally find a doctor here in Florida who offers this treatment. I believe my two doctors were just assuming I would get better over time and weren't recommending additional treatments. Well I got tired of waiting. I started the five week treatments two weeks ago and have also added a hydrogen peroxide IV. I have two treatments a week. I have a bit more energy now and plan to continue the full treatment. I'll keep everyone posted over the next few weeks and let you know if this helps with my chronic fatigue.

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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.

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@lisajensen

I have tried 2 UV and Ozone treatments like what you describe. I hope to start up more sessions when I am done with some travel. I will report back as well as to if they help!

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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?

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@kschmoyer9

Hi EBV sufferers! I wish I had seen this earlier, but I just came across it today. First of all, I want you to know that you’re not alone in your misery. I was a senior in high school when I had my first episode of mono. I ended up missing almost half of the school year. Couldn’t stay awake. No energy. My whole body was affected. At age 22, it happened again. The doctors gave me prescriptions for to combat the fever, upper respiratory, headache, sinus infection, etc., but nothing helped! I went to another doctor for a second opinion and after an examination and some other tests, the diagnosis came back as Epstein Barr Virus. Unfortunately, I also found out that I would have to live with this for the rest of my life and I had even higher chances of developing mononucleosis again and again and again. I never know when this virus is going to rear its ugly head, but finally, after 30 years of struggling I have my life back. Two years ago I was at the end of my rope. A friend of mine introduced me to some of the most amazing supplements from Plexus Worldwide that I have ever tried.

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@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.

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