Avatar universal

EBV sufferer; searching for a ray of hope

Hello all! I'm looking for any hope anyone has to share. I've truly lost any hope since I have been so incredibly sick for far too long. EBV has taken over and there's zero quality to my life anymore. I'm completely alone in this fight to recover.
July 2021- Starting feeling ill, intermittently. Chalked it up to stress and anxiety
September - symptoms of feeling ill become noticeably worse. Thought perhaps I came down with Covid. Tested negative. I was told to rest and push fluids, just a virus that has to run its course.
October - laying in bed for the night, sudden intense tight pain on the left side of neck. I was told it was muscle related or possible start to viral infection. Again told to rest and push fluids.
November- still feeling ill intermittently and neck pain/tightness still.  Numerous doctor appointments, walk in clinic and my primary. All told me its viral, get rest and push fluids. Famous last words.
December - symptoms still getting worse. Cold and flu like symptoms, extreme malaise, fatigue, sore throat, extreme nausea at times, intermittent running nose, intermittent shortness of breath accompanied with bilateral lower lung pain, pain in both calves. I new something was terribly wrong at this point and doctors had to have been missing something. How can anyone been so incredibly sick for this long over "a virus that just has to run its course."
January 2022- Symptoms still continue. Some days took every ounce of strength I had just to get out of bed to go to work. For me, it's the generalized not feeling well, something is definitely wrong, extreme exhaustion that is the absolute worse for me out of all the symptoms. I cried many days because of this, didn't know how I would make it through the day. I couldn't miss a day of work, so I struggled day in and day out with this. 9 times out of 10 I felt as if I was dying each and every day. At this point I become so depressed and hopeless, I've seen enough doctors and thousands in medical appointments and couldn't get any answers other than the famous, "it's a virus that has to run it's course"  by now, I've lost contact with friends and family, lost the strength or wellness to see or talk to anyone.
Started feeling these shock like vibrations internally throughout my entire body. It's not the easiest to explain. Imagine how your cell phone feels in your hand when it's on vibrate, now just imagine that but internally. I'll never forget the first time I felt it, scared the crap out of me.
February- Went back to see a different doctor for a oooh I don't know 4th opinion. Finally I found a doctor that truly listened to me and all the horrendous symptoms that's lasted for many many months. Ordered lab work, and finally was given some answers. I cried when I was given the results. Cried that someone finally listened to me and found what was the cause of being so sick for so long. All the EBV antibodies were off the charts. Unfortunately though, I am told there's currently no treatment for the virus, again plenty of rest and push fluids.
March- Neck pain has returned, same neck pain I experienced in October 2021 that lasted roughly 2 months. After seeing charts of lymph nodes location in the neck, I believe that is exactly where my pain is located. Also discharged from the hospital for sepsis. Cause of the bacteria in my blood is still unknown. I'm awaiting an appointment with a specialist to hopefully get that answered.
April- still have neck pain. Doctor recommended Physical Therapy first, otherwise insurance will not pay for an MRI. He has the MRI ordered, but I have to go through the motions of PT first.

Ya'll - I'm exhausted and going through all this alone. I'm tired of being tired and lost any hope that I am actually going to recover from this. Perhaps in the mean time, I could see a nutritionalist, which I plan to ask doctor to put in a referral to. I've done loads of research to hone in on foods to avoid and foods to eat, too many conflicting answers.

Has anyone with EBV had lymph node complications in their neck and can give me direction on what I can talk to my doctor about? Is this a sign of auto-immune complications, or just part of the EBV ?

Has anyone seen a nutrionalist? If so, please share what they recommended as a diet.

Has anyone been septic from EBV or have any thoughts on that?

Are these internal vibrations common with EBV or should I be pushy with my doctor to see an immunologist?

Thank you to all that's taken the time to read and respond. I am grateful to have found this forum. Praying for all you that have suffered right along with me. I look forward to ya'lls input!

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Avatar universal
I’m sorry you’ve been so sick and dealing with this alone.  
Have you seen a functional medicine doctor/naturopath? They seem to have much more grasp on EBV complications and co-infections.  My doc started me on valacyclovir recently so hoping it starts helping reduce the viral load.

EBV is known to have correlation with MS, you should definitely have someone evaluate the internal vibrations you’re feeling as they may be nerve related.

As for diet, look into either a paleo diet or Dr Terry Wahl’s protocol. Even simply cutting out gluten, sugar and dairy to reduce inflammation in your body can help. I know the diets are overwhelming and contradicting, I’ve just learned to start with cutting out inflammatory food and see how my body responds.

Just know you aren’t alone and you will get answers. Best of luck to you!
Helpful - 1
Avatar universal
Ask for acyclovir prescription. It helped my daughter overnight it was like a miracle. It’s not a traditional way to treat this by the medical community I don’t know why they haven’t adopted this protocol because it absolutely works.
Helpful - 0
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