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Epstein Barr Virus (EBV) Message Board

  • Epstein-barr virus/rare auto-immune reaction/clinical trials

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    Old 08-18-2022, 06:40 PM   #1
    EBVfighter
     
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    Epstein-barr virus/rare auto-immune reaction/clinical trials

    Hello everyone! I hope this health forum gives you some relief as it did for me last year, that you are not alone in this hell of health we find ourselves battling. If you're reading this, most likely you also feel like your slowly dying and can't get answers from the medical profession.

    Possibly have a loved one that has been incredibly ill without answers or medical support? That's what brought me to these health forums, hoping that just one of these will have the answer we all have been searching for.

    After many doctor visits with my PCP, 2nd 3rd and 4th general medicine opinions, the doctor's were clueless. Referred to infectious disease specialist, and now patiently awaiting for my upcoming new patient appointment with Neurology next week. Fingers crossed, prayers sent.

    During one of my attempts to seek another opinion, one physician did listen and evaluate me thoroughly, and after a trip to the lab, found very high titers for Epstein-Barr Virus and Cytomegalovirus. He explained to me that EBV was in a reactive state from a previous infection (mono.)

    All of my symptoms are as follows:

    ⦁ Fatigue and malaise
    ⦁ Intermittent sore/burning throat
    ⦁ Sinus pressure/pain-with and without congestion
    ⦁ Cervical, axillary, and inguinal lymphadenopathy (swelling of neck,armpit,and groin lymph nodes)
    ⦁ Bilateral (both sides) ear pain, tinnitus(ringing in ears), tops of ears burn like fire
    ⦁ Left sided neck pain, sometimes right
    ⦁ Unintentional weight loss- lost 20 pounds
    ⦁ Temperature readings variations- 96 F- 101 F
    ⦁ Heat intolerance
    ⦁ Thymus gland area pain/discomfort- (behind breastbone, above heart)
    ⦁ spleen and liver area pain- accompanied with shortness of breath
    ⦁ Bilateral calf pain
    ⦁ Balance and gait coordination is off
    ⦁ Internal vibrations/tremors/quiver/buzzing, pins and needles sensation all throughout my body-from neck to toes
    ⦁ Sudden muscle jerks - only at night before and during sleep
    ⦁ Insomnia
    ⦁ Headaches with and without vertigo
    ⦁ Constant low back pain
    ⦁ Floaters in eye sight occasionally
    ⦁ Skin has a red tint or hue to it
    ⦁ Bilateral upper and lower leg rash- flat, pink, scaly dime sized spots-lasted roughly 2-3 weeks

    It's been a long exhausting road needless to say, first symptoms were in July of 2021.

    I've noticed a strange phenomenon with the symptoms and how they flare up. For example: I'll exhibit symptoms ABCD for 2-3 months, then symptoms EFGH for 2-3 months, then symptoms IJKL, then back to symptoms ABCD.. I wouldn't conclude it's concretely like this 100% of the time, but generally this is my observation overall.

    My take away from all the research I've done thus far... Nutrition and diet is important, definitely not a cure all in my opinion, but very beneficial. I've learned to be patient with outcomes. It doesn't change over night. I decided on a "anti-viral" diet, incorporating foods that are higher in Lysine, and lower in Arginine and immune boosting foods. There's a plethora of information on the web if you too believe we get out of our bodies what we put into it.

    Has anyone here had a doctor tell them that Epstein-Barr virus does NOT reactivate, or that they have never encountered it with other patients? In my journey, I had a general medicine doc test for EBV(4th opinion doc) and told me my symptoms are in fact related to a reactivation of the virus. With that knowledge, I've done extensive research and found plenty of information online that supports this theory and does have many similarities to my symptoms. However, my Infectious Disease doctor has not heard of EBV reactivating and did not believe my symptoms were attributing to EBV. How strange? A specialist said no way, and a general medicine doctor said absolutely?? That causes me to question, does Epstein-Barr truly reactivate when the immune system becomes weak or does Epstein-Barr cause a rare auto-immune reaction in the body that professionals have yet to discover? With almost zero quality to my life, and perhaps many of others out there, desperately searching for answers, I am determined even at my most weakest of days, to keep on fighting.

    Moving forward, I plan to speak with my Infectious Disease doctor about enrolling into a health case study/clinical trial. If I can help research along, maybe one day find a cure or treatment that works, I will gladly enroll in a clinical trial. Has anyone been part of an EBV clinical study? If so, share which one and its details. For anyone interested:

    https://clinicaltrials.gov/

    Other useful websites I use:

    https://www.nlm.nih.gov/

    https://rarediseases.org/

    https://www.nih.gov/


    I truly hope I have brought some encouragement to someone that's reading this, or at the very least given some relief that you are not alone out there.

    I hope to hear from you, and wish you all well and good health.

     
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    Old 09-27-2022, 04:02 PM   #2
    Ol'Line Rebel
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    Re: Epstein-barr virus/rare auto-immune reaction/clinical trials

    Hello - just wanted to acknowledge your thread.

    I wonder how things turned out for you?

    I myself have been going through medical nonsense for years and years, and wonder if my major problem from this summer on is from EBV - I have other ideas, too.

    Reason being 1 time, a year after I had strange undiagnosed symptoms for a semester (always seems to coincide with being in college term, except this last summer), I had parvovirus/Fifth Disease and my GP later did a test including EBV as well as P19. She said both came back positive - the EBV meaning I had a previous infection. Which made me think the previous year I might have had "mono" yet no one even ventured the idea (I DEFINITELY had Fifth Disease that year along with my son).

    But then, visiting a Infectious doctor the next year when I started having really bad "fatigure" symptoms, his labs showed no EBV.

    So I really don't know, but I still wonder if this current suffering is due to EBV - new, or reactivated.

    Just wanted to know if you got more answers.

     
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