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  • Did you have these EBV symptoms?

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    Old 07-13-2016, 02:27 PM   #1
    eaeonline
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    Did you have these EBV symptoms?

    I recently tested positive for Epstein-Barr Virus (not sure the levels yet) after asking to be tested for everything and having the following symptoms for the past 7 months (I also have a slight case of POTs and Mitral Valve Prolapse and I've had TMJ for a while):

    Some of these symptoms are gone or have improved:
    Light-headed when standing
    Really bad depersonalization/derealization feelings
    Waking up at 3 am or 4 am feeling anxious, trouble going back to sleep
    Tingling in my arms/fingers (that has gone away)
    Pain in my big toe joints
    Burning left ear lobe that would come and go
    Pain, fullness, and ringing in left ear that comes (rarely in right ear)
    A sharp pain in one spot in my left thigh (that has gone away)
    Neck tightness
    Neck tension
    Pain on the left side of my neck and constant clicking in my neck when I move it around
    Heart palpitations (which have improved since I have been taking magnesium supplements)
    Strange burning feeling in my throat when breathing that comes and goes
    Burning sensation in my throat that has been more constant lately
    Eyes feeling dry
    Twitching in my face that comes and goes and I used to get strange sensations in my face in my left cheek (but don't get those anymore)

    They also found a 3cm lump in my neck next to the left of my Adam's apple which both the ultrasound and CT Scan and two ENTs says a cyst of some sort, but I'm seeing a 3rd ENT next week to get a final opinion. No other lumps were detected in my neck. One of the ENTs showed me the lump in the CT Scan image and explained to me why he thinks it's benign.

    I don't have any trouble swallowing, no weight loss, no night sweats (I just can't sleep through the night), and I can move the lump around a little and it's not too hard but not soft.

    Is this, including the lump, ALL from EBV? I'm trying to stay positive and hope for the best, but of course when you go on the internet it can be pretty much anything. I know all I can do is get the lump tested and all that, but I'm curious to hear if any of you have experienced these same symptoms or had a cyst/lump due to EBV (my primary physician is telling me that why the lump got there).

    Thanks!

     
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    Old 09-05-2016, 12:33 AM   #2
    lizzibee
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    Re: Did you have these EBV symptoms?

    I have not been diagnosed with EBV but i have all your symptoms except waking in the night feeling anxious

     
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    Old 09-05-2016, 06:56 AM   #3
    eaeonline
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    Re: Did you have these EBV symptoms?

    Quote:
    Originally Posted by lizzibee View Post
    I have not been diagnosed with EBV but i have all your symptoms except waking in the night feeling anxious
    Hi Lizzibee: I'm assuming you had everything except waking at night and the cyst too, or did you also develope a cyst?

    Have you been tested for anything?

     
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    Old 09-05-2016, 08:13 AM   #4
    dle11
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    Smile Re: Did you have these EBV symptoms?

    Hi there, don't know if you will get this since it is Sept 5, 2016, but I am new to this board, and saw your post.
    First of all, I have had all of your symptoms and more for over 25 years.
    After the initial Epstein Barr infection, which will stay in your body forever, you will come down with Chronic Fatigue Syndrome. When I was told this at the age of 25, most docs said it didn't exist, and just pushed me out the door. Lots has changed in the medical community now, but I still come across healthcare people who say it is not a disease, say it is all in my head and want to give me pills for depression, etc.
    But, do not give up in your journey back to feeling better. Now, as for you nodule, it sounds to me that you have Hashimoto's disease, which I also have.
    You need to get Izabella Wentz book, " The Root Cause". The book helped me see that my Hypothyroidism was not just low thyroid but the autoimmune disease, Hashimotos. I also had a benign nodule on my thyroid, and that is part of Hashimoto's, which also has roots of being caused by Epstein Barr virus.

    Then, FIND A GOOD DOCTOR WHO IS WILLING TO TEST YOUR THYROID. I went for over 20 years thinking I just had low thyroid, and doctors never told me I had Hashimoto's disease. All these years of suffering with ulcers, terrible depression, panic attacks, arthritis, back and neck problems, elbow and knee problems, and swollen lump nodes, along with a laundry list of other problems with my period, endometriosis, and the list goes on.

    If these stupid doctors would actually learn something new, than less people like myself would suffer.
    Please let me know if I can help, as I was all alone forever and know what it feels like to not know what is wrong with your health.
    Good luck, and God Bless.

    Last edited by Administrator; 09-06-2016 at 09:06 PM.

     
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    Old 09-23-2016, 09:49 AM   #5
    JohnR41
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    Re: Did you have these EBV symptoms?

    From what I have read, EBV definitely is a disease; it's a virus that stays in your body and never goes away. By age 30, 97% of people have it. The good news is: For most people, the virus will exist in remission as long as a healthy immune system is maintained.

    Last edited by JohnR41; 09-23-2016 at 10:00 AM.

     
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    Old 09-23-2016, 10:59 AM   #6
    dle11
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    Re: Did you have these EBV symptoms?

    Hello,
    I am so sorry to hear that you are suffering with EBV. I too have the EBV virus, although mine is in remission.
    First off, let me give you some info that I have learned from my health issues. EBV causes a condition called "Chronic Fatigue Syndrome". It is lifelong.Once the virus is in you it will be there forever. But, it can get better. All of the symptoms that you have are probably caused by the virus, or Chronic Fatigue Syndrome (CFS)
    I also have had thyroid problems for years, (22years of Hypothyroidism) and thought like everybody else does that medication was all that is needed.
    Four years ago, I had a nodule on my right thyroid and even though it was benign, the doctor removed the whole right lobe. Now, I find out that I have another nodule on my left lobe. It is too small to do a biopsy, so I am hopeful that I can shrink it.
    Now, here is the info that you need to find out, and that means you need a good Functional Health doctor, or Naturopath, or just a good doctor who is willing to look at your whole body: chances are you have Hypothyroidism, because Hypothyroidism is what causes nodules in the thyroid. Chances are, you have what I have, Hashimoto's disease, which is an advanced autoimmune disease, caused by low thyroid. None of my doctors let me know that I had Hashimoto's disease. I had to look further into my tests.After reading about what causes nodules I found out that EBV causes Hypothyroidism advances into Hashimoto's and causes nodules. So, chances are if you have EBV, you have Hypothyroidism, and Hashimoto's. It is just the way it goes. You need a doctor to do a full thyroid panel. A TSH, which is a standard thyroid test is not enough. A auto body thyroid test is more accurate. Also, you need a T-3, T-4, Free T-3 tests. These are more in depth, and will give the doctor more info. Sometimes, people will test in the normal range, and the doctor will say you don't need thyroid. This is Bull$#*!. Find another doctor. Almost anybody with thyroid disease will tell you that they were told that many times, before they found out that they were indeed low thyroid, or Hashimoto's disease.
    I know this will probably come as a shock. I found out at 25 that I had Chronic Fatigue. It ruined my career. I have never been the same. It is a hard disease to live with. But, it will not get better until you get on thyroid meds, if you do have Hypothyroidism, or Hashimoto's. In fact, if you have Hashimoto's, you will get a lot worse, without meds. I have arthritis, Fibromyalgia, and other problems. All from the EBV, or Chronic Fatigue.
    Get to a good doc, and also, get this book, it really helped me see that all my symptoms are rooted together: Hashimoto's Thyroiditis: Lifestyle Interventions for Finding and Treating the Root Cause by Isabella Wentz.

    You will also be better sooner if you change your diet to gluten free, and all organic. I know you will probably go through a lot of emotions, please know that you are not alone! I will answer any questions that I can, and people here on this board are VERY helpful!!! Go to the Thyroid section, and post your question, you will get lots of help!!!
    Also, something that has really helped me is melatonin. It will help you to sleep at night. Take 1-5 mg. before bedtime. It has helped me. Along with everything in the book. Eat lots of greens, and eat paleo. Give up bread, cookies, muffins, etc. I know it sounds like a lot, and IT IS! But, I can't walk if I eat crap!

    So, I rather feel good, than eat cookies, cakes, bread, etc.
    God Bless,
    Deb

    Last edited by Administrator; 09-23-2016 at 12:07 PM.

     
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    Old 09-23-2016, 11:45 AM   #7
    dle11
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    Re: Did you have these EBV symptoms?

    Hi John;
    Yes, remission will continue until:immune system is taxed either by other disease, or if you push yourself. That is why you must get enough sleep, drink lots of water (pure) eat clean, gmo free, organic, and don't push yourself. Even going to the gym and over doing it can send you into a remission. I was a professional dancer, and thought if I just keep exercising it would go away.
    WRONG! Take lots of vitamins. Look online for vitamins that are pure. Not regular one a day type. Eat lots of greens, grown organic.
    And, gluten is one of those things that most people can do without. Limit if not stop eating.
    Good luck,
    Debbie

     
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    Old 08-17-2017, 05:00 PM   #8
    Marie2017
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    Re: Did you have these EBV symptoms?

    Quote:
    Originally Posted by eaeonline View Post
    I recently tested positive for Epstein-Barr Virus (not sure the levels yet) after asking to be tested for everything and having the following symptoms for the past 7 months (I also have a slight case of POTs and Mitral Valve Prolapse and I've had TMJ for a while):

    Some of these symptoms are gone or have improved:
    Light-headed when standing
    Really bad depersonalization/derealization feelings
    Waking up at 3 am or 4 am feeling anxious, trouble going back to sleep
    Tingling in my arms/fingers (that has gone away)
    Pain in my big toe joints
    Burning left ear lobe that would come and go
    Pain, fullness, and ringing in left ear that comes (rarely in right ear)
    A sharp pain in one spot in my left thigh (that has gone away)
    Neck tightness
    Neck tension
    Pain on the left side of my neck and constant clicking in my neck when I move it around
    Heart palpitations (which have improved since I have been taking magnesium supplements)
    Strange burning feeling in my throat when breathing that comes and goes
    Burning sensation in my throat that has been more constant lately
    Eyes feeling dry
    Twitching in my face that comes and goes and I used to get strange sensations in my face in my left cheek (but don't get those anymore)

    They also found a 3cm lump in my neck next to the left of my Adam's apple which both the ultrasound and CT Scan and two ENTs says a cyst of some sort, but I'm seeing a 3rd ENT next week to get a final opinion. No other lumps were detected in my neck. One of the ENTs showed me the lump in the CT Scan image and explained to me why he thinks it's benign.

    I don't have any trouble swallowing, no weight loss, no night sweats (I just can't sleep through the night), and I can move the lump around a little and it's not too hard but not soft.

    Is this, including the lump, ALL from EBV? I'm trying to stay positive and hope for the best, but of course when you go on the internet it can be pretty much anything. I know all I can do is get the lump tested and all that, but I'm curious to hear if any of you have experienced these same symptoms or had a cyst/lump due to EBV (my primary physician is telling me that why the lump got there).

    Thanks!
    I'm not sure if you'll be back on but I have most of you symptoms and am so upset. My IGG is >700. I would like to know how you are doing now?

     
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    cyst, epstein barr (ebv), lump in neck, neck mass



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