Living A Positive Lifestyle With Chronic EBV Illness – CAEBV
Testing and Finding Quality of Chronic Illness Lifestyle Again
Living with Chronic Active Epstein-Barr Virus (CAEBV) can be a challenging experience. As someone who has been diagnosed with CAEBV, I understand the struggles that come with this condition. CAEBV is a rare disease in which the Epstein-Barr virus (EBV) remains active in the body and causes chronic inflammation. This can lead to a range of symptoms, including fatigue, fever, swollen lymph nodes, and liver dysfunction.
Diagnosing CAEBV can be difficult, as it is a rare disease that shares symptoms with other conditions. However, there are a number of tests that can help to confirm a diagnosis. These include blood tests to check for elevated levels of EBV antibodies, as well as tests to check for the presence of the virus in the blood or tissues. Once diagnosed, living with CAEBV requires a combination of medical treatment and lifestyle changes. Lifestyle changes make the biggest impact on finding quality of life again.
Diagnosing Chronic Active EBV
As someone living with Chronic Active Epstein-Barr Virus (CAEBV), it’s important to understand the diagnostic tests that are available. It can be frustrating to find a doctor that truly listens. I have learned that I am my best advocate. I know I do not have a doctorate, but what I am equipped with is the ability to know my body better than anyone else. Find a doctor who is knowledgable in EBV. I searched and tried both Western and Eastern Medicine. With much hope, I traveled to The Cleveland Clinic staying 4 days, seeing every specialist they recommended: immunologist, cardiologist, infectious disease, gynecologist. SIGH! I was given an alphabet soup of diagnosis’ but not one tested for EBV. I’ll cut them some slack here as this was 14 years ago and there have been great developments in the knowledge of CAEBV since. Know what to ask and talk about before you go to any appointment. I recommend writing your questions down. CAEBV loves to attend the mind buffet and devour all those important things we need to remember.
The 3 P’s Of A Doctor Visit
BE PATIENT, PROACTIVE AND POSITIVE. Living with a chronic illness and the overflow of doctor visits, blood draws and scans can become a part time job. I found myself so irritated to go and hear the same thing over and over- “You look okay. Your blood work is not too far off. Have you tried a _______ (insert your favorite specialist here)? Let’s run _______ (insert another medical test your insurance is sure to need a preauthorization for).” I have found my most successful visits are when I go in with gratitude for the time to talk with the doctor. Telling them you appreciate their time and knowledge goes a LOOOONNNNGGG way. I assure them I am not a hypochondriac but need their experience and input in learning how to tackle my symptoms with understanding and function in life the best I can. Don’t get me wrong, I have walked in just wanting the visit to be over, kept my lips tight and walked right back out. It got me no where but battling the same exhaustion, brain fog and body pain as when I walked in. Schedule your appointment on a day you are not trying to fit in pick up from your child’s dance class, dinner before the basketball game and an orthodontist appointment for your youngest. UGHHH! Let’s face it, just trying to do one of those tasks can be exhausting for us! Know before you go….. write down your questions, concerns and tests you’d like to discuss. Keep the faith….. when those you are talking to see you have not given up and continue to find the positive they react positive back.
Blood Tests For EBV
Blood tests are the most common way to diagnose CAEBV. These tests look for antibodies to the Epstein-Barr virus in your blood. The most common blood test is the Monospot test, which looks for antibodies to the virus that cause mononucleosis. Other blood tests include the Epstein-Barr virus antibody test which will give you IGG, IGM and EBNA values. The most important blood test is the Early Antigen EBV. This test is not ordered by many doctors but when monitoring and checking for CAEBV it is essential! EA EBV will be able to indicate if you are currently infected and battling the virus. If I could give one take away about blood tests, it would be to ask for the EA EBV. Knowing what your body is fighting off now helps equip you for the right battle gear moving forward.
Understanding the EBV antibody testing : https://www.testing.com/tests/epstein-barr-virus-ebv-antibody-tests/
It’s important to note that while these tests can help diagnose CAEBV, they are not always accurate. It’s possible to have CAEBV and have negative test results. If you suspect you have CAEBV, it’s important to talk to your doctor about your symptoms and medical history. They can help you determine the best course of action for diagnosis and treatment.
Managing CAEBV, A Must To Improve Your Ongoing Illness Lifestyle
Living with Chronic Active EBV can be challenging, but there are ways to manage the symptoms and maintain a good quality of life. Finding balance and quality of life is possible! Watch what you eat. There are so many good foods to fight EBV but more that feed it! I have found great success in removing gluten and eggs from my diet, adding fresh blueberries and cilantro – just to name a few. I have spent many hours researching EBV diets. The best thing I did for myself in this area was to work with a functional medicine doctor and dietician. The Medical Medium is a great resource for recipes and EBV healing foods.
Medication Regimens for CAEBV To Promote A Positive Lifestyle
There is no specific medication to cure Chronic Active EBV, but some medications can help manage the symptoms and improve your lifestyle. Antiviral medications such as acyclovir, valacyclovir, and ganciclovir can be used to suppress the virus. I was able to talk to my doctor about beginning antiviral medication and started on Valacyclovir. For me, this helped the symptoms tremendously. I will take one daily as a way to keep my immune system up for the EBV challenge and increase to 3 a day in a flare. Corticosteroids such as prednisone and immunosuppressive medications such as cyclosporine can help reduce inflammation and control the immune system. Be careful with steroids as they can also lower the immune system. It is essential to consult with a doctor before taking any medication, as they can have side effects and interact with other medications.
Lifestyle Adjustments with CAEBV
Making lifestyle adjustments is the BIGGEST way to help manage Chronic Active EBV symptoms. It is crucial to get enough rest and avoid overexertion, as fatigue is a common symptom. MOVE THOSE FEET! I had to start with small goals… a walk to the mailbox…. then 1 block. I worked up to a mile. This is not an easy task for us with EBV! Some days I have to move it back down to 1 block. Do not get discouraged! Give yourself grace. It is so easy to feel sorry for yourself when all your body wants to do is curl up under the softest blanket and sleep. I promise, a few steps and sunshine makes the world of difference in convincing your body to keep fighting. Avoiding alcohol and tobacco can also help improve overall health. It is essential to consult with a doctor before making any significant changes to your lifestyle.
Long-Term Monitoring
CAEBV is a chronic condition that requires long-term monitoring. Regular doctor visits and blood tests can help monitor the virus and detect any complications, improving your lifestyle. It is essential to keep track of symptoms and report any changes to the doctor. Advocate for yourself but remember the 3 P’s above. In some cases, Chronic Active EBV can lead to complications such as lymphoma, so it is crucial to stay vigilant and build that relationship with your primary doctor.
Managing Chronic Active EBV requires a combination of medication, Chronic Illness lifestyle adjustments, and long-term monitoring. With proper care and management, it is possible to live a full and healthy life with this condition. Do not loose your FAITH. Find gratitude in the simple things. Congratulate yourself on the small accomplishments. This life is worth living, your story is a gift to share and keep dancing in the rain!
