Chronic Epstein-Barr Virus

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Chronic Epstein-Barr Virus
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    What is this group about? #TBI #CervicalDystonia #Neuropathy #ChronicEpsteinBarrVirus #DoctorVisit #PatientAndDoctorExperiences

    You can see this group is about anything. I wish it wasn't! I didn't put Childbirth, as I don't think it applies! lol. But one thing is...you can't get well or better if your doctor doesn't understand. You know that! Don't be afraid to search for one who does! I AM NOT A DOCTOR, but I've been in the medical field 20 years before disability. I've never stopped. Advocacy because of my love. While I am weary and have shut down many sites, I love Mighty so here I am.

    If you have questions, I beg you to be as specific as your comfort level allows. (regarding the relationships) There are ways to make your visits rewarding and helpful for getting better. I can attest to this. I've lived through things that are a bit shocking, but having the right doctors and mind set, is what saved my life. I am recovering from something now, so thanks for your patience.

    Something we have known for a long time, but it's not spoken about. Again, I do not "bash", but I urge you to go with your gut. Harvard found (as if it was new) the 3rd leading cause of death. And many believe it is higher, as most are unreported. This is not to scare, but to inform you in all honesty, you must be involved in your care. Trust, transparency etc... is a must. I will do a video to show what is needed for doctor visits at another time. Please, it's your life, and make it worth getting better!

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    What’s your opinion on eating in bed? 🛌

    Finding the most comfortable place to eat can be tricky sometimes especially since there may be places where you prefer to eat and places that are off limits. What are your opinions on eating in bed? It’s likely unavoidable to eat in bed especially when most of your time is spent in bed because of health challenges, but some people have rules. Do you have rules in what foods you enjoy eating in bed vs. what foods you would prefer not to eat in bed? Do you eat everything in bed? Are there certain times of the day where eating in bed is ideal, while other times not so much?

    There is no wrong answers!

    Let's share in the comments below 👇

    #ChronicIllness #Disability #ChronicPain #Pain #BackPain #Spoonie #Fibromyalgia #Neuropathy #MyalgicEncephalomyelitis
    #Lupus #Cancer #Gastroparesis #MultipleSclerosis #RheumatoidArthritis
    #IrritableBowelSyndromeIBS #InflammatoryBowelDiseaseIBD
    #ChronicEpsteinBarrVirus #MentalHealth #Depression #ChronicDepression #Anxiety #PanicAttack
    #InvisibleIllness
    #alwaysinbed

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    I'm new here!

    Hi, my name is opus88. I’m new to The Mighty and look forward to sharing my story.

    #MightyTogether

    #Anxiety

    #Depression

    #PTSD

    #Dysautonomia SIBO #LymeDisease #ChronicEpsteinBarrVirus

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    Coping & Management of Dysautonomia. #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #ChronicEpsteinBarrVirus #Grief #coping

    I'm a 33, almost 34 y/o female living in Florida. It's taken approximately 7+ years to finally reach a diagnosis. I was officially Dx with dysautonomia (in the form of POTS) in 2021 as well as testing positive for Chronic Active Epstein Barr. In those 7 years, I was also dx with a micro-pituitary adenoma- protection secreting, hypothyroid, PCOS, endometriosis- the whole gamut. I've had surgeries, been on and off a slew of medications with little to no avail. I generally feel like I'm fighting a long, arduous uphill battle with my symptoms most days. I certainly don't mean to sound like I'm complaining, as I know it could all be worse I'm sure, just vocalizing frustration and exhaustion. The majority of my symptoms have become nearly debilitating. At this time, my doctors and I have discussed moving into the "management" phase of my illnesses. At 33, I feel so defeated. My husband of almost 9 years, also feels frequent defeat as we try and adapt to the ebb and flow of what each day brings. Dietary wise, over the years I've been vegan & vegetarian. I've done Keto & Whole 30. Currently, we are trying to start supplementing with high dense nutrient foods, such as leafy, cruciferous greens, celery juice, and just an all out full focus on quality over everything. I do feel weary though. I suppose I'm writing this more-so as a place to share my current feelings of defeat. Hearing words and phrases such as "there is no cure" or "this is as far as we can go with this particular medication" is daunting. To be honest, I feel scared most days. I'm fairly active (to the best of my ability) and try to walk 1-3 miles every other day. I'll also sit on the floor and lift 1-2lb weights for general strength training. Typically, because of my conditions exercise typically makes me feel exponentially worse, but alas, I do it because it's important to me and I know at the very least, it can/might help with my mental health as I move forward and process the emotions related to my chronic conditions. Anyone else struggle with these feelings? What sort of things helped you mentally or physically in the early management phases when your body was in a lot of pain? It's worth noting here that I do regularly see a therapist and psychiatrist for my depression/anxiety management. It was their recommendation that I try to reach more individuals like myself by way of support groups. So here I am, lol!

    To compound some of the grief I'm feeling with my health, we also lost our beloved dog of 12.0.0.5 years just before Christmas. He was my buddy and there with me through it all. Losing Finn (our dog) has been very tough. The emotional support and love our fur baby's give us is unconditional, and as I navigate this transition of chronic care, I'm struggling deeply with this loss wishing I could hold and hug him daily. I'll share a picture below of Finn and I when he was still here.

    Question
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    Time in bed

    How much time per day would you say you spend in bed? For me, it varies. I try to get up and move around for a few minutes, periodically, to help circulation, I help take care of the horses sometimes ( which I used to do entirely by myself ), exercise a little if I can, or take a ride with the hubby in the car ( Its been over two years since I’ve driven ), but the majority of my time is spent in bed. I’d say in a twelve hour period, I’m in bed around 10 of those hours. How about you? #ChronicIllness #chronicillnesswarrior #ChronicDepression #MyalgicEncephalomyelitis #Fibromyalgia #ChronicEpsteinBarrVirus #Gastroparesis #Neuropathy #DiabeticNeuropathy #TheMighty #MentalHealth #Disability #Disabled #MultipleSclerosis #Lupus #AutoimmuneDisease

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    This week’s unique bed!

    This Unique bed is absolutely beautiful. The creativity and imagination that went into it are nothing short of amazing. I could see myself drifting off into a Fairytale slumber in no time at all. Tell us what you think of this Swan song of a bed! Hope you all are enjoying your day! Health and happiness to you all! ✨🛌✨ #ChronicDepression #ChronicIllness #ChronicPain #PeripheralNeuropathy #TheMighty #Disability #BackPain #Pain #MultipleSclerosis #MultipleAutoimmuneSyndrome #GastrointestinalDiscomfort #Gastroparesis #Lupus #Fibromyalgia #MyalgicEncephalomyelitis #ChronicEpsteinBarrVirus #ChronicFatigue #DistractMe

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    Sleigh bells and sleigh beds!

    Being it’s the holidays, today’s unique bed is a sleigh bed! Throw some bells on it, hook up your team of reindeer and take off for anywhere in the world you want to go! Hope everyone had a wonderful blessed Christmas 🎅🏼🎄✨🎁 #ChronicIllness #ChronicDepression #ChronicPain #TheMighty #Disabled #Disability #bed #Gastroparesis #Lupus #MultipleSclerosis #Fibromyalgia #MyalgicEncephalomyelitis #ChronicFatigue #Pain #MentalHealth #DistractMe #ChronicEpsteinBarrVirus

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    What are you all doing today?

    The weather outside is cold with freezing rain. But I am inside, all snuggled up cozily in my bed with my little bed buddy Grimace next to me, watching “ Gentlemen Prefer Blondes “ and eating deliciously fresh chewy donut holes. What are you doing today? #ChronicIllness #ChronicDepression #MyalgicEncephalomyelitis #Fibromyalgia #AutoimmuneDisease #Neuropathy #DistractMe #CheckInWithMe #MightyPets #Disabled #TheDisabledLife #bed #ChronicEpsteinBarrVirus #AutoimmuneThyroidDisease

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    New #EpsteinbarrVirus diagnosis. Help!

    So I've just gotten my #EBV results and the Dr didn't call to explain. I've scoured the internet but hoping my fellow spoonies can give me some insight with your experiences. I don't seem to fit the symptoms for #ChronicEpsteinBarrVirus so not really sure how this plays into my #Fibro issues.

    EBV Viral Capsid AG IGM <36 (neg)="" ebv="" viral="" capsid="" ag="" igg="">750 (pos)
    EBV Nuclear AG EBNA IGG >600 (pos)

    I also have #Fibromyalgia . Tested neg for Lyme. Neg for ANA 7 years ago. Positive for HLA B27.

    Secondary, I feel like my 7 year old just isn't right. He has low IGA and IGB #s so he gets sick a lot. He struggles with some fatigue and still needs a 2 hour nap every day on top of a full night's sleep. All bloodwork normal. Should I test him for EBV?

    Thanks in advance!