About

Daily life, living with Chronic Active Ebstein-Barr Virus, Chronic Fatigue Syndrome, MTHFR, Factor V Leiden Mutation, Fibromyalgia, Gout, Levoscoliosis, Chiari 1 Malformation, Syringomyelia, Hypoglycemia, Osteoarthritis, Irritable Bowel Syndrome -D, Endometriosis, Spina Bifida Occulta and more. This is my journal of my life dealing with the ups and downs of my illnesses and laughing with my mother who also suffers from CEBV, MTHFR, FVL, Diabetes and CFS. I am actively seeking a cure or remedies to simply assist my mother and I in feeling normal with many trial and errors. Connect with me to follow us as we discover new ways to normalcy through laughter and remedies.

I have had CAEBV for over 20+ years. It took physicians 6 years to discover what it was and diagnose me. It is truly about finding the right doctor to diagnose you. Once I found the right doctor, I was diagnosed within the first week. He was a hepatologist (Liver specialist). Even though I was diagnosed with CEBV there was no cure and very little treatment which is basically treating the symptoms.

Currently if I am experiencing a flare up I do not go to the doctors because they ultimately do not and can not help the majority of my symptoms. When I do go they tend to run me through a work up of blood tests and x-rays, sonograms, etc even with outcome of results very little help is offered. This is due to their lack of knowledge on the chronic form of epstein-barr virus.

My biggest advice to anyone suffering from CEBV is don’t over due and get your rest. I have found this is the best defense from flare ups. Also, if you have CEBV I would suggest you go to a hematologist (blood specialist) and get blood work done for MTHFR and Factor 5 Leiden Mutation … I believe this is the reason for me having the Chronic form of Epstein Barr Virus primarily due to MTHFR, a defiency with B12, B6, Folic Acid given teh fact that EBV takes the B pathways to invade.

Good Luck!

8 Comments (+add yours?)

  1. Kari
    May 12, 2012 @ 11:36:48

    How long have you had EBV? I assume EBV is mono? Can it be related to Leaky gut?
    What have you found to help with EBV?

    Reply

    • Libby
      May 12, 2012 @ 14:41:46

      Hello Kari, I have had CEBV now for 13 years. I am not positive if leaky gut would cause CEBV or not. I am however aware that I contracted CEBV during a surgery (tubes tied) and obviously the surgical tools were not sterilized properly. CEBV is everywhere, it is just a matter if you are more sensitive than others to contract the chronic form which is easier to contract if blood to cut or blood to blood contact is involved.

      To help you understand how severe this illness is putting it nicely … it takes away your whole life. There is no more going to the mall to shop, there is no more planting flowers in your front yard, there is no more shopping for groceries. Imagine being homebound because you do not have the energy due to CFS and your body being in intense pain and this is a Good Day! When it flares up so does the pain, kidneys, liver, diarrhea, vomiting, visual disturbances, hearing problems, joint pain, muscle pain, neuralgia and did I mention bone pain … just to name a few. It’s bad. When I walk/stand the bottoms of my feet hurt up. It is no walk in the park. Before I got sick, I couldn’t imagine someone suffering so bad and being able to live everyday with such a horrific illness.

      Imagine when you get a bad case of the flu now times that by 10 … that’s my good day with CEBV.

      Here is a little info on CEBV:
      Epstein-Barr Virus (EBV) is part of the Herpes family of viruses and is said to be one of the most prevalent pathogens in human beings. It is estimated that around 75-90% of the populace is infected, completely unaware due to varying intensities of symptoms. Typically the virus is benign, though it often causes the common ailment Mononucleosis. It is also assumed to be the direct cause of several different diseases such as Hepatitis, Stevens Johnson Syndrome, and Burkitt’s Lymphoma, etc. In recent years, some doctors have even ascribed the virus to be one of the main causes of Chronic Fatigue Syndrome (CFS). However, it is most elusive and unique in its association with another disease, which has come to be known as “Chronic Epstein-Barr Virus Infection” or “Chronic Epstein-Barr Virus Disease” (CEBV).

      Here is a link to the noted symptoms of CEBV. I however experience many other symptoms not on this list.
      http://cebv.org/index.php?option=com_content&task=view&id=13&Itemid=28

      Good luck! 🙂

      Reply

  2. AshleyAnn Louise Barnes
    Sep 15, 2014 @ 18:45:38

    Do you still write here? I was wondering if I could talk to you. Please get back to me if you can.

    Reply

    • Libby
      Oct 17, 2015 @ 06:30:37

      Sorry for the long delay. It has been crazy for me with regards to my health. I will be adding more info to my blog. But how can I help you?

      Reply

    • Libby
      Apr 19, 2017 @ 12:04:03

      So sorry for the delay. I hit a major rough patch. Feel free to contact me if you have any questions or to chat. Big hugs.

      Reply

  3. mossyshaw@gmail.com
    Feb 19, 2016 @ 21:38:07

    I was diagnosed with Fibro 8 ys ago, the CFS. I would tell them I think I am dying and I would tell my family the same, no one too concerned about it. Its just fibro. I have been unable to work for 8 ys, looked at crosseyed by doctors ruling out MS and other possibilities. The PAIN in my legs and feet, bones and unbarable fatigue sent me in yet AGAIN, this time referred to a internist, she ran EBV panel and had mono, which to me I thought was another “fibro flare”. then ran a HIV test, negative, 2 weeks later one titer had gone down to normal but the other titers she said were quite high. Being sent now to Rheumy and Endo, if I even go. I am not living but existing and it is a pretty miserable existance. especially when very few people have any clue as to how horrible you truely feel. Was diagnosed this week with CEBV, was wondering if you ever have terrible organ pain?? had CT in the ER, thoguht it was kidney stones, bad bad pain and everything came back fine and was ridiculed out of there for wasting thier time, those places are for sick people he told me. cried all the way home and all that night, could feel my kidney spasming, turning and kicking at me, terrible night sweats, waking drenched and freezing cold. I hope you are feeling better and I pray some day someone will recognize this as something VERY REAL!!

    Reply

    • Libby
      Apr 19, 2017 @ 12:00:59

      So sorry for the delay. Are you sure it was your kidney and not your liver? I do get kidney and liver pains (all the organs have their issues) but for kidney and liver I drink 100% cherry juice by juicy juice and cranberry juice to help rid toxins in liver and kidneys. I do this at least once a week unless it’s acting up more. Do you have a fatty liver … if yes then doing a ct or any imaging will not allow them to look into it which means everything will come back normal because they can’t see. My mom had a similar experience (she also has ebv, fibro and other health issues) she went in and was in a lot of pain and she was crying uncontrollably after the tests came back all normal but they did say they couldn’t see into the liver because of the fatty liver and the pain meds they were giving her did not help finally a nurse suggested to a doc to give her hydromorphone – 2 pills to start then 1 pill every 4-6 hours. Finally she got relief. So next time this happens ask for that if they cannot get it under control. I’m not sure of the theory / concept behind why it worked. I know they use this med on cancer patients for various reasons (I am in now way saying you have cancer btw) but it helped my mom. I really need to research this again. Good luck and big hugs.

      Reply

  4. mossyshaw@gmail.com
    Feb 19, 2016 @ 21:38:40

    also have the MTHFR gene mutation

    Reply

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