EPSTEIN-BARR VIRUS/RARE AUTO-IMMUNE REACTION/CLINICAL TRIALS
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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:
Other useful websites I use:
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
Jaky47854 EBVfighter
Edited
its crazy how little is known about this and people have no idea what we are going through and the constant change of symptoms and the on and off just makes it harder hopefully soon we will find out more
EBVfighter Jaky47854
Edited
It baffles me how little doctor's understand this virus.
Mono_too EBVfighter
Edited
This sounds like me, I had an EBV panel done igm 36, 1gg greater than 600 and nuclear antigen 318, they are saying it is now past infection, I still feel ill, they are saying that it's long covid.
laurajade7 Mono_too
Posted
its funny how they can say its long covid without evidence but wont say its long or chronic glandular fever. how are they sure its long covid is there evidence its still in the system?
i truly believe in long covid its horrible for many but they completely disregard glandular fever still existing after a few weeks
Mono_too laurajade7
Posted
I think it is a combination of both. It took me almost a year to recover from mono in 2016. Long covid came on after a pcr positive case. I have had covid in 2020,2021 and 2022, also reactivated mono. Hoping for better days.
laurajade7 Mono_too
Edited
i get there is evidence with a PCR for covid like there is for a possitive igm with glandular fever. however with both these tests after a while go negative, if people continue to have covid symptoms even if are no longer possitive they will be diagnosed with long covid only with the evidence of them having had covid before. although with EBV they dont seem to recognise or understand when the symptoms go on for months and wont believe you to be still suffering with it. its a bit annoying especially when i see the consultant and even they dont know EBV and look at you very confused because the weird symptoms we all get. its good they know so much about covid though thats not been around half as long
EBVfighter
Edited
Don't give up. I know it sucks, but find a doctor who will listen to you. It took 4 different general medicine doctor's to tell me my symptoms were caused by reactivated EBV.
My Infectious disease doctor doesn't believe it though. I'm tempted to print off every article I can find on it and bring those to her attention. I'm near the end of my appointments with her though, she says there's not much else she can do. I'm seeing Neurology this week.
Praying for all of us suffering for far too long!
Better days ahead!
laurajade7 EBVfighter
Posted
no i wont give up. i am now on the mend, i wont go on medication from a doctor though because they have slowed my progression in the past. i have personally come to terms that the medical community dont understand this, having been ill nearly 18 x months. even if the docs understand it, as its a virus there isnt a whole lot they can do. like you said diet, time and looking after yourself But support regarding the horendous symptoms would be nice!
EBVfighter laurajade7
Posted
I'm so sorry to hear you've been sick for 18 months. Have you noticed any improvement at all? Duration of symptoms lessen at all for you? Intensity lessened atleast? Any improvement, if so, what?
laurajade7 EBVfighter
Posted
yes much better now but its never too far away. in the 18 x months i have had acute mono twice. the covid jabs for me have had a lot to do with it. symptoms i have left are fatigue and muscle twitching ovcasional aches and pains
EBVfighter laurajade7
Edited
That gives me and others still suffering so much hope that this shall pass one day! I'm delighted to hear your feeling better!
For my own safety and health reasons, I decided not to take the covid vaccination. I'm pretty certain I had covid in 2020 and I believe that may have triggered EBV to reactivate. I haven't been myself since. I do think there's a correlation between covid/covid vaccination and the reactivation of EBV.
Again, thank you for the ray of hope that I and many others will get well someday.
saba2012 EBVfighter
Posted
omg, i'm so glad i've found this forum, ebv is horrible, i can also list the same symptoms as you ebv fighter, also headache every day, high blood pressure that i never had before, tremors, insomnia, developed this kind of skin issues where my feet and hands are always wet, then my skin feels like sandpaper, please keep posting and sharing advise, news, we all in this together, don't wish it on anyone, i was very active, always energetic person, now forget about it, please spread the word that it can happen to anyone, not enough information, education out there
saba2012 EBVfighter
Posted
had mri, eeg done of my head, got the results today, at least everything clear in this "section", nothing wrong, so at least this is comforting to know
EBVfighter saba2012
Posted
saba2012 - I'm glad to hear your mri results were clean. What symptoms were you having that doctors ordered an MRI?
EBVfighter
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saba2012- yes I see your other reply with symptoms...
what have you done for insomnia? I used to take Melatonin but that no longer works. Then I went to Zquil, that no longer works.
I too get clamy hands and feet at times, but I can't say I relate to the sandpaper feeling you're having.
saba2012 EBVfighter
Posted
my memory got kind of bad, but i'm trying to do sudoku, word puzzles etc., to "exercise" the brain, memory was really bad but it is getting better, it was short term memory, long term memory had no problems, and got really bad tremors in my hands, in the beginning had very hard time to even write something, noticed that the tremors are either better or worse as time of the day, also had bad weakness in my legs, and i was a very active person, in the beginning my legs were very shaky, read somewhere that this is also one of the symptoms of ebv, hope this helps
saba2012 EBVfighter
Posted
yes, the weirdest of symptoms one has with ebv, i'm taking mirtazapine/remeron for sleep, 7.5 mg, it helps so far, i never had insomnia before, could nap during the day with no problems, now no way, i take the mirtazapine and go straight to bed, then meditate for a bit and then i'm out, have hard time in the morning getting out of bed, gabapentin is one of the meds that helps with anxiety and sleep, it seems that a lot of meds stopped working for me after getting diagnosed with ebv, hope that helps