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  • I need input from people who have been diagnosed with chronic EBV

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    Old 02-26-2011, 02:21 PM   #1
    missksue
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    I need input from people who have been diagnosed with chronic EBV

    I would like to hear your experiences and your journey to diagnosis. I am thinking of asking my doctor to test me for chronic EBV. I finally - after 20+ years got a sleep apnea diagnosis. Using CPAP seemed to help very little. Went for another sleep study and got narcolepsy diagnosis, which is what I suspected in the first place, just couldn't convince anyone else. Have been on 250mg Nuvigil with varying degrees of effectiveness - mostly ineffective after the first week. I told my sleep doctor that I had always secretly felt that my problems began after a SEVERE case of mono 20+ years ago. He scoffed at me and I dropped it. I have had a particularly difficult weekend and have been doing some researching and came across chronic EBV. My life in a nutshell - I am a 49 year old womam in good general health. My BP is good (borderline low) and cholesterol 201. I had my thyroid tested last week and it is supposedly normal. My eating habits are not the best, but not horrible. Mostly pretty balanced. Weight is okay, do not have organized exercise routine, but very active. The only way I can stay awake is to stay on my feet, so that is pretty much what I try to do. If I sit down there is a 100% chance I will fall asleep in minutes - even after some coffee and Nuvigil. Last week when trying to shop, I just wanted to sit down in the middle of the store and cry - I felt so uncontrollably sleepy. I am not depressed and not physically tired - just excessively sleepy. Social life is so frustrating - my husband and I try to get out with other people and I sit there fighting sleep. It is noticed by everyone. My eyes get red and burn and eyelids heavy. The strain shows on my face. I look cracked out. My family used to make fun of me, but now realize that it is beyond my control. They are very supportive, but frustrated. I want my life back. Does any of this sound familiar to you chronic EBV sufferers?

     
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    Old 03-04-2011, 12:31 PM   #2
    adpace
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    Re: I need input from people who have been diagnosed with chronic EBV

    I feel for you as I've been there. I went to the doctor in 2005 specifically asking him to address my fatigue issues. At that time, I had probably told more than 20 doctors about it, but they all brushed me off saying I was young and healthy. A small handful of them did a bit of blood work usually including a thyroid and iron test which always came out "normal".

    When I saw the doctor specifically for fatigue, he immediately scheduled me for a sleep study where they determined I woke up more than 300 times per hour night. To make a long story as short as possible, they basically pronounced me depressed (as they didn't know what was causing me to wake up since it wasn't apnea) and moved on. I knew that wasn't the case and I eventually went to a Fatigue and Fibromyalgia center where they diagnosed me with CFIDS (a specific type of CFS).

    In any case, I would find yourself another doctor who will do, at a minimum, the following:

    1. Yes, ask for a test for EBV and CMV. They are closely related and it is helpful to know what you have. While it's next to impossible to eliminate a problem with EBV, there are drugs you can take, albeit they are controversial in some circles as to their effectiveness, that can help reduce the amount of the virus in your system and thus help your immune system deal with it better.

    2. Ask for another thyroid test, but make sure that they don't just do a general TSH test. You need to ask for a Free T3, Free T4 and Reverse thyroid test. I told you my story above because the doctors had been doing thyroid tests for me for years and only found it to be "normal". Once I found a doctor who ran the above tests, she literally told me that she didn't know how I was getting up in the morning or functioning at all. My "anti-thyroid" production was almost double that of my regular thyroid production and was making my life miserable.

    3. If you can find a doctor who will do those tests, you might also ask for an iron test. My iron was low despite being told by other doctors it was normal. One thing I learned from the doctor who finally treated me for all my issues was that what is considered a "normal" range on blood tests is determined by all the people going in for blood tests - people who are potentially sick and not "normal"!

    4. Finally, have you thought about seeing your sleep doctor to make sure the CPAP is actually doing what it should for your apnea? Maybe some adjustments need to be made. If you're still not getting sleep because the apnea treatment is not working like it should, that could be causing some of the same issues.

    So the bottom line is that you really need to find a doctor who is sensitive to these issues and I know it can be a challenge. I spent probably 15 years of my life with an ever-worsening fatigue problem until I finally found someone who didn't just blame it on allergies or brush me off.

    Also, I'm surprised you're not taking something for sleep - especially given that you have a bonafide sleep condition - unless there is something about the sleep apnea that makes that dangerous. Ambien was a lifesaver for me while I was dealing with all of this. And although some people told me not to take it because I would get hooked, that just wasn't the case. Once the doctor started treating the underlying issues, eventually I just didn't need the Ambien anymore and stopped taking it naturally.

    Anyway, good luck and I hope you can find a compassionate doctor that will treat you with respect. And to answer your questions, YES you should definitely get the tests if you are that tired all the time. My life is 100% different from what it was several years ago. I still struggle from time to time, but it's nothing like it was.

     
    Old 03-05-2011, 06:50 AM   #3
    missksue
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    Re: I need input from people who have been diagnosed with chronic EBV

    Thank you for your reply. It is encouraging to hear that you have gotten some relief. My family doctor, who I dearly love, did tend to dismiss my complaints. He is a close family friend and knows a lot about my life. He kept telling me that I was just tired because I am a mom and doing all of the school volunteer stuff, leading the Girl Scout Troop, etc. He tried to tell me that again last year and I explained that I am an empty nester now who doesn't work and could sleep all day if I chose to do so - but that isn't what I want to do. He ordered the sleep study and the sleep doctor was skeptical because I don't fit the profile - I am in good general health and not overweight. I was having 70 "respiratory episodes" per hour. When the daytime sleepiness did not improve after 3 months on CPAP, we did the sleep study for narcolepsy. At this time, it showed that the CPAP was doing what it was supposed to, but did get a narcolepsy diagnosis. Nuvigil has been intermittenly effective. My longtime OB-GYN retired and I recently saw my new one. I chose a woman because I wanted someone who would listen. She did and she ordered the full thyroid panel. I shared with her that I believed their "normals" were off because people generally don't get their thyroid tested unless they are having a problem. She did not dispute that theory. Anyway, all of my blood work came back good. I am sure she will agree to test me for EBV and I intend to get that done. In the meantime, I have done a lot of reading and am taking a natural sleep aid. I also had many of the symptoms of low stomach acid. I am currently taking 3 Betaine HCL with Pepsin capsules before every meal and have had a better week. I also just stay on my feet all day.

    It can be so frustrating trying to find someone who is interested in listening. When my girls were younger, I went to an endocrinologist. When trying to explain that I couldn't even stay awake through helping them with a 20 word spelling test, I broke down in tears. She patted me on the arm and said "There is no shame in being depressed. We have medication for that" I wanted to scream. She did test my thyroid, which of course was "normal". I know that there is no shame in being depressed, but I trully am not. I have a wonderful life with a wonderful husband of 26 years and two wonderful girls. I just fall asleep every time I sit down!

    Again, thanks for your reply. I am going to continue with the HCL and get tested for EBV soon. I hope your treatments continue to help you.

     
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    cfs, hypersomnia, naracolepsy, sleep apnea



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