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.

@airsleeper

I was diagnosed with Chronic Epstein Barr four or five years ago. However, I have had symptoms for 15+ years. Very long story short…I’ve also been diagnosed with Chronic Fatigue Syndrome, sick sinus syndrome, MTHFR gene mutation, hypothyroidism, and I can’t remember everything else. I’ve noticed from the recent posts I’ve read that nobody has mentioned seeing a doctor at Mayo Clinic. I see a great doctor who is treating all of these illnesses, but my family is urging me to go to Mayo. The doctor is in support of this, too. I’m wondering if it would be worth the exhaustion and expense of traveling over 1,000 miles, hotel stay, and eating out. I’m concerned that no better treatment is known and that
This will be a waste of my time and money…which is low due to not being able to work. I had to take early retirement. I need some advice here, please.

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Could you help me? I have been sick for 10 weeks with Mono they said it should it’s reactivated. Is this a lifelong thing or will I ever be the same? Anytime I do anything physical I get sick with bacteria like congestion. etc.

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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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Hello Jonathan @jonnybear619 – I got your private message but thought I would answer you here as others in the group may also have some ideas that might help. You mention you have been sick for 10 weeks. Have you seen a doctor for your symptoms yet?

The reason I ask is that with my first occurrence of polymyalgia rheumatica the pain was unbearable by the time I sought help. I had to crawl up the stairs and use a walker and my wife drove me to my doctors appointment. It kind of crept up on me a little at a time. I was put on a low dose of prednisone and was finally able to get off of it when the PMR went into remission. It was in remission for 6 years but started back up last summer.

Mayo Clinic website has some possible causes for the type of fatigue may be experiencing listed here – http://mayocl.in/1JPq7NK. If you haven't seen the doctor about the fatigue, sleeping a lot and just being exhausted all the time, I would definitely try to see your doctor as soon as possible.

Please don't give up! You are your best advocate so I would recommend keeping a daily log of how you are feeling, activities, hours slept, etc.. I would also recommend writing down any questions you may have for the doctor as it is so easy to forget when are actually with the doctor.

John

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@clghanimo

I so understand your dilemma. I am 60 this month and have had this issue since I was in my 30’s. It was nothing to lay down to take a nap and wake up 4 or 5 hours later and still be exhausted and ready for bed at night. I am still fighting to get someone to recognize what I am trying to say. I went to the Dr. this past week with the complaint of painful joints, brain fog, headache and exhaustion. At the appointment she raises my Zoloft and talks to me about my mood and the she sends me for blood work to check my thyroid and A1C. Recommendation to watch what I am eating and she will see me in a month. My job is suffering, my family life suffers, and my health continues to suffer. I am not sure how many times over the years I have asked myself “is it really just in my head?” Sorry to be a downer, I do have wonderful moments. I have realized that I have to force myself to keep going and the more I move I do forget about the pain. I am also still looking for help.

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Hello @cighanimo, I think one of the side effects of Zoloft is fatigue, drowsiness and brain fog. Are you able to have a conversation with your doctor on your situation with how you feel? When do you take the Zoloft in the morning? If the doctor knows you are having fatigue during the day maybe you can discuss taking the medication in the evening? You are your doctors best source of input on how you feel and what’s going on with your body. I would have a serious discussion with your doctor and if she is not receptive consider getting a second opinion. Here are some tips from the Mayo Clinic website on dealing with side effects of antidepressants like Zoloft:
http://mayocl.in/1JaQ0KG
I am happy to hear that you are still having some good days. I can relate to that a lot. It hurts today but tomorrow is a new day – one step at a time, one day at a time. Keep pressing your doctor for answers and write down all your questions for them to make sure you don’t forget anything.

John

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@airsleeper

I was diagnosed with Chronic Epstein Barr four or five years ago. However, I have had symptoms for 15+ years. Very long story short…I’ve also been diagnosed with Chronic Fatigue Syndrome, sick sinus syndrome, MTHFR gene mutation, hypothyroidism, and I can’t remember everything else. I’ve noticed from the recent posts I’ve read that nobody has mentioned seeing a doctor at Mayo Clinic. I see a great doctor who is treating all of these illnesses, but my family is urging me to go to Mayo. The doctor is in support of this, too. I’m wondering if it would be worth the exhaustion and expense of traveling over 1,000 miles, hotel stay, and eating out. I’m concerned that no better treatment is known and that
This will be a waste of my time and money…which is low due to not being able to work. I had to take early retirement. I need some advice here, please.

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Thank you ! I’m hoping to find a doctor who will try and sort out my problems.

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@clghanimo

I so understand your dilemma. I am 60 this month and have had this issue since I was in my 30’s. It was nothing to lay down to take a nap and wake up 4 or 5 hours later and still be exhausted and ready for bed at night. I am still fighting to get someone to recognize what I am trying to say. I went to the Dr. this past week with the complaint of painful joints, brain fog, headache and exhaustion. At the appointment she raises my Zoloft and talks to me about my mood and the she sends me for blood work to check my thyroid and A1C. Recommendation to watch what I am eating and she will see me in a month. My job is suffering, my family life suffers, and my health continues to suffer. I am not sure how many times over the years I have asked myself “is it really just in my head?” Sorry to be a downer, I do have wonderful moments. I have realized that I have to force myself to keep going and the more I move I do forget about the pain. I am also still looking for help.

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Hi cighanimo, I’m not the only one dealing with 30 years of the unknown. no dr has wanted to sort out my issues and it is so frustrating . I was dx with Hashimotos in 1984, and with CEBV in 1994. The one dr gave me a meds for the Hash’s inflamation and ther other did nothing for the CEBV My thyroid burnt out and I’ve been hypo ever since and have been on Levo for 30 yrs. I have a multitude of symptoms pain, fatigue, rashes, etc., off and on. But This is the worst I’ve ever been …with debilitating fatigue and ” liver pain.” I also have diabetes & high BP , so my pcp concentrates on those problems. . My hope is to find a doctor who will treat the EBV and Hashimotos …but I don’t have a clue who to go to.

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@clghanimo @suzyp @jonnybear619 I thought this video might be helpful for you.

What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome:
http://bit.ly/2nvf21H
I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.
Mayo Clinic Tours – YouTube Videos: http://bit.ly/2o3jvMj

John

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@johnbishop

@clghanimo @suzyp @jonnybear619 I thought this video might be helpful for you.

What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome:
http://bit.ly/2nvf21H
I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.
Mayo Clinic Tours – YouTube Videos: http://bit.ly/2o3jvMj

John

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Awesome video. Thanks, John, for posting. I understand how frustrating it must be to be a woman and an illness be passed off as an irrational woman thing. However, what is even more frustrating and even more demeaning to me is to be a man with ME and made to feel less of a man because this illness is usually diagnosed in women. The lady in this video does a great job explaining the history of ME. It’s just another way that the medical community is avoiding the medical issue of ME. I am a 54 year old male. I was finally diagnosed in 2013 with Chronic Epstein Barr Virus, Chronic Fatigue Syndrome (ME), and a host of many other things. I’ve had to leave a job that I loved and excelled at after 21 years, relationships have suffered, and finances are a mess. I am a man with a disease. THIS IS NOT A GENDER SPECIFIC ILLNESS!

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@johnbishop

@clghanimo @suzyp @jonnybear619 I thought this video might be helpful for you.

What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome:
http://bit.ly/2nvf21H
I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.
Mayo Clinic Tours – YouTube Videos: http://bit.ly/2o3jvMj

John

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Hello @airsleeper, I completely agree with you. I'm guessing there are a lot of illnesses that may fall into that category of occurring more with women than men or vise versa. I think it probably has more to do with different levels of experience, specialties and expertise of the different doctors involved. That's really why (IMHO) a person has to be their own advocate and learn as much as they can about their illness and ask lots of questions and not taking I don't know for an answer – that's a little over the top but I think a person has to be persistent. We patients may not have the medical knowledge but we do know how we feel and we need to make sure the doctor understands, pushing them to find the answers. I've had many of those discussions with my primary care docs because they change every few years in a family clinic. My last doctor wanted me to take statins to "help" lower my cholesterol and was quite taken back when I told her I'm not taking them, I will work on my diet to try and bring the numbers back into line. I told her one of the things I have learned about my peripheral neuropathy is that statins make it worse so why would I want to take them.

Anyways, I'm hoping all of us can find some answers and the help that we need. Have you found anything that helps you that you can share?

John

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@airsleeper

I was diagnosed with Chronic Epstein Barr four or five years ago. However, I have had symptoms for 15+ years. Very long story short…I’ve also been diagnosed with Chronic Fatigue Syndrome, sick sinus syndrome, MTHFR gene mutation, hypothyroidism, and I can’t remember everything else. I’ve noticed from the recent posts I’ve read that nobody has mentioned seeing a doctor at Mayo Clinic. I see a great doctor who is treating all of these illnesses, but my family is urging me to go to Mayo. The doctor is in support of this, too. I’m wondering if it would be worth the exhaustion and expense of traveling over 1,000 miles, hotel stay, and eating out. I’m concerned that no better treatment is known and that
This will be a waste of my time and money…which is low due to not being able to work. I had to take early retirement. I need some advice here, please.

Jump to this post

Thank you Kanna…..i appreciate your
comments. I am sorry for the multiple posts –I’m having a little trouble navigating on this site yet. Say a prayer that I can find the right doctor. Susan

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@johnbishop

@clghanimo @suzyp @jonnybear619 I thought this video might be helpful for you.

What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome:
http://bit.ly/2nvf21H
I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.
Mayo Clinic Tours – YouTube Videos: http://bit.ly/2o3jvMj

John

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John, thank you for the info…the video was very touching ….I’m considering trying to get an appt. in Jacksonville.

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It is really nice to connect here and read stories similar to mine! I am 57 years old and one year ago contracted Herpes Type II from my long term partner. Since that time I have experienced extreme fatigue, depression, digestive upsets, headaches, myalgia, arthralgia, inflamed lymph nodes, sore throats, low grade fevers. No testing from regular doctors resulted in anything “wrong” with me. In the last 10 years I have had thyroid cancer (in complete remission) and viral meningitis (hospitalized for 2 weeks). I had given up on drs and decided I was probably dying and they couldn’t find what was wrong. I regularly thought I would have my children put “I told you I was sick” on my gravestone! Ha ha.
I finally saw a Functional Medicine Physician would dx’d me with Chronic EBV prior to testing me and she was right on the money. Since that time I have been taking LOW DOSE NALTREXONE. There is a book out there you can read about LDN and plenty of websites. It has been working for me; no cure by any means but definitely helps. I also take supplements; N-Acetyl-L-Cysteine, Aller C, VS-C (natures sunshine), 25mg Thyodine, Circum Eval (circumin) and 2k+mg Vitamin C per day (I use rose hips variety), 800 mg Magnesium, 200 mcg Selenium, and 10000iu Vit D daily.
I continue to have good days and bad days. The best advice I have been given is “do not run on adrenaline”. I am working on regulating my days to include small walks daily (I used to be a very active athlete, but over the years have just not had the energy), standard bed times and rising times, and learning not to expect too much of myself. There are days when I sleep 14-18 hours. I am working on paying attention to what my body needs. I switched over last year to a Vegan diet (not perfect at it but generally am). I found I cannot tolerate dairy (especially cheese and yogurt), lots of breads (try to minimize or eliminate all together), and simple starchy foods (such as white potatoes). I still use some sugar but miminally. I eat a lot of black beans and chick peas and tons of veg. When I keep my diet this way, I feel better and have more energy and less bad days. If I keep a regular schedule and go to bed around 9pm, rising around 6-7am, I do ok. If I need a nap in the middle of the day I take it. If I had a regular job I would be BROKE, but I work for myself and so I am able to continue to make a living without having to go to an office every day. I do travel for work and find that I have to limit the number of clients I see in a day and when I am more than 200 miles from home I choose to stay in hotels.

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@juliemd

Hi Everyone, I am at the beginning and yet middle of my journey. I had mono when I was 20 and have struggled with severe fatigue off and (mostly) on again ever since. I have been repeatedly diagnosed with depression because of the fatigue. Finally, 3 years ago, my dr. decided to run another mono test and sure enough, I had a current or recent infection. Fast forward to last week. I have moved across the country and am now with a new dr. I finally decided to ask for another mono test and sure enough, again, I tested positive for a current or recent infection. For me, it makes sense of my 26 years of fatigue. Now I am hoping to figure out what I can do to somehow recover from/mitigate this frustrating pattern.

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I would recommend a functional medicine physician. I am also using LDN therapy and it seems to really be helping.

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