I’m in Daytona Beach FL area looking for specialist

Posted by tlynnm @tlynnm, Aug 29, 2023

Diagnosed with Reoccurring EBV, May 2022. (Based on EBV VIRAL CAPSID AG (VCA) AB (IGG) blood test results)
I asked PCP to run newer tests that would show EBV “Load” Especially because the frequency and how sick I get. He said “NO, we already know you have “it”!?
The symptoms of the virus get worse each reoccurrence!

I Had a Afib ablation procedure end of May. Had no idea how invasive that procedure was.
At the end of June I noticed pale Feces, dark urine, itchy skin etc. liver issue symptoms. PCP sent me for CT of abdomen, Unfortunately liver was barely visible w/out contrast.
Few weeks ago I started having pain when I was touched, like over active nerve endings, I was sleeping 14 hrs a day. Then I noticed I had a lot random bruises, Edema in my legs and any where I’d bumped into something those bruises are awful, I hit my right shin on a table, the next day that “bruise” was internally running down my leg down to top of my ankle sock.
I look like I’ve been hit by a car. PCP sends me to get “stat “
lab work. His thought is the Eliquis I’ve been on for
6+ months is the cause of All my symptoms, including fatigue, tenderness etc. My thought/ Intuition is telling me Liver, kidney’s or leukemia.
I’m extremely emotional, for 2 months he knew my concerns about my liver, kidneys , lack of energy. Yes a Doctor has a medical degree, BUT do not Negate the patient’s description of how they “feel”
It’s the Doctors degree AND their ability to HEAR their patient’s that makes a great DOCTOR.. team work
PCP insisted I go
to ER.. They did a C/T with contrast which showed ; Liver: is enlarged, hepatomegaly measuring 20.5 cm in craniocaudal dimension.
Ran blood work, Alt/ AST over 5xs higher than 3 months ago , Monocytes % 5xs higher, Monocytes Absolute twice than 3 months ago, GFR, 60,etc etc Urinalysis anxiously waiting
Today Cold sore, Fever, sore throat, enlarged lymph node etc.. second time this month.
It’s been a long year of feeling 100 yrs old, unable to enjoy or participate in LIFE.. Ive tried to educate myself about about Chronic/Reoccurring EBV, its triggers, disease process, the toll each “flair” takes on my whole body, new treatments, new tests etc I firmly believe my current situation is caused by EBV ..
I need help finding a specialist, that listens not sure where I start Immunology or hepatology..I’m blessed with health insurance that does not require a referral. I have every test, scan etc
I’m about 1.5 hrs away from Mayo.

Interested in more discussions like this? Go to the Infectious Diseases Support Group.

Perhaps you could use this site to request a consult at Mayo Jacksonville. The care there is comprehensive and worth the trip. Wishing you the best outcome possible.

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I am looking for guidance from others who have been affected by Chronic EBV. I intended to post about my current battle with what feels like “constant” EBV…But I went on a “rabbit trail” with my “story”
As they say just the facts ma’am …?

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Yes Mayo is close and is one of my options… I came across this group “Googling” “specialist to see……”

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@tlynnm

Yes Mayo is close and is one of my options… I came across this group “Googling” “specialist to see……”

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@tlynnm, if you would like to inquire about consulting with a Mayo Clinic expert, you can get started by clicking this link to talk with an appointment coordinator http://mayocl.in/1mtmR63

You may also be interested in other discussions related to chronic Epstein-Barr virus (EBV) here:
- https://connect.mayoclinic.org/search/discussions/?search=Chronic+EBV

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