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EPSTEIN-BARR VIRUS/RARE AUTO-IMMUNE REACTION/CLINICAL TRIALS

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EBVfighter
EBVfighter

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/

https://www.healthline.com/

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.

2 likes, 24 replies

24 Replies

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  • saba2012
    saba2012 EBVfighter

    Posted

    EBVfighter I'm going through your symptoms, and one, heat intolerance, yes, omg, i was an outside person, working in yard, gardening etc, was always tanned, after ebv, when sun rays hit my skin, it feels like my skin is on fire, i can't wait for cooler weather here in the south, can't do it outdoors any more when is hot, can so relate, total heat intolerance

  • monica25949
    monica25949 EBVfighter

    Edited

    omg i feel this so much!! i told my doctor about getting re tested for the ebv but he said it will still be positive bc i already had mono

    • EBVfighter
      EBVfighter monica25949

      Edited

      I encourage you to find a doctor who will listen to you. Did they draw a full EBV panel the first time?

      I've had a full panel done twice, once in February 22, 2022 and again July 27, 2022.

      Here were my results from February:

      VCA IgG 750

      VCA IgM <10.0

      Early D Ag IgG Interpretation- Nothing was noted here in February

      (EA-D) - IgG >150.0

      Antibody to Nuclear Antigen - IgG >600.0

      Nuclear Ag, IgG Interpretation-

      nothing was noted here in February

      Capsid Ag, IgG Interpretation-

      nothing was noted here in February

      Capsid Ag, IgM Interpretation-

      nothing was noted here in February

      Here's July results:

      VCA IgG 750

      VCA IgM <10.0

      Early D Ag IgG Interpretation- Positive

      (EA-D) - IgG >121

      Antibody to Nuclear Antigen - IgG >600.0

      Nuclear Ag, IgG Interpretation- Positive

      Capsid Ag, IgG Interpretation- Positive

      Capsid Ag, IgM Interpretation- Negative

      I noticed everything stayed the same except (EA-D) - IgG . It dropped from 150 to 121 in 5 months. I hope and pray that means it's moving in the right direction and that I'm slowly but surely on the road to recovery.

      Better days are yet to come.

      As always, be well, one day at a time.

    • monica25949
      monica25949 EBVfighter

      Edited

      i think they did the full panel in feb bc thats when i got it . but omg im so tired of it . i always feel like something is wrong! if my doctor does not end up listening to me im going to find a new one! my mono was hell in feb ive gotten better but still feel s****y . hope ur better!

    • EBVfighter
      EBVfighter monica25949

      Edited

      You got to wonder if we end up suffering with every symptom in the book.

      My symptoms come and go and usually switch up. I guess the virus wants to keep things interesting.

      As of right now I'm dealing with the neurological issues that come with EBV. Along with the low grade fevers, night sweats, and horrible fatigue.

      I write this as I am drinking my ginger turmeric and lemon tea. I'm determined to beat this one small step at a time.

      I hope you are doing well also! Better days are yet to come.

  • EBVishorrible
    EBVishorrible EBVfighter

    Edited

    Are people's symptoms continuous or intermittent? In the past 4 months, I've had 8 occurrences of mono at discrete times for 7-10 days at a time:

    -Sore throat that gets progressively worse

    • Strong fever with high temperature and muscle fatigue for days 3-6
    • mild headaches, ears popping and ringing, mild ear pain
    • general fatigue

    I've also been noticing worse memory and language skills since my first flare up in mid July.

    However apart from memory issues, in-between flare ups, I feel mostly fine and even quite energetic. The problem is that even the slightest bit of exercise that isn't just walking triggers a flare up.

    I got tested for EBV mid OCT and had: IgG > 750 IU/ml, and IgM <10 IU/ml.

    My HPV genital warts are also becoming resistant to treatments... Past 2.5 years I've had bad luck with lifelong illnesses that most people get and deal with asymptomatically 😦

    I'm pretty sure I've had more time with symptoms then without in the past 4 months and I'm scared reading of the articles that say chronic EBV is fatal and I'm just so lost. Its so demotivating when your health turns its back on you.

    • saba2012
      saba2012 EBVishorrible

      Posted

      hello ebvishorrible, i'm dealing with this crap since april, i don't know what i would do if i wouldn't come to this forum, yes you are so right by saying your health turns its back on you, my latest symtoms to be added to the long list of other symptoms is vertigo, ringing in ears, weakness in my knees, before all this i was a very active, always on the go person, now is pure hell, just like you are saying i also have memory issues, language issues, i just take it day by day, pray and come here and read and share messages of hope, but this ebv is brutal, this is the darkest i've ever been in my life

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