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EBV/HHV-6 reactivation
here are my symptoms for the last 5 years,
had bad mono at 19, Im 55
Its cycling, thats whats confusing, never know WHEN, but its always starts and ends the same. Been a long 5 years
june
2020 deathly sick, was in bed for 3 days, unable to use phone, no food, very little water, got up to use bathroom a couple times, delirious, couldnt focus enough to call or message anyone. completely soaking sheets even with very little fever. Hot and freezing at same time, while sweating.
Not the same as hot flashes. bad restless leg and MAJOR depression doom and gloom. extreme fatigue/sleepy horrible sore throat. as I was coming out of it, ended with 2 days of diarrhea and thrush like symptoms.
got the same again 2 weeks later, almost as bad then 2 weeks again, not quite as bad. ER,
end of August 2020? nothing showed with covid test... said maybe hormones,
get it every couple weeks to a month since.
I usually know its coming, by the restless leg, Nothing like first time, but starts same, out of the blue.. restless legs, cold sweats, horrible doom and gloom depression, and ends with 2 days diarrhea and my tongue has never been right since. Gets inflamed with a lot of foods symptoms never change, same thing every time.
had positive blood test for covid/ long covid?, but this doesnt really fit that either. so put symptoms into chatgpt and it said check EBV since I had a bad case. Do my symptoms cycling fit with anyone? Thanks for reading!
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Have you had a PCR or DNA test for HHV-6?
If you're positive, this can be treated with antivirals.
I have had internal shingles for several years, and was only recently diagnosed with a reactivation. I was initially treated in December 2022.
It is interesting that you have restless legs; I have restless feet. And also with the doom and gloom and diarrhea...OMG.
I hope you can get relief soon! 🙏
I've just been dealing for 5 years, its horrible.
Never knew what tests to ask for and drs were just, I dunno, blood work is ok.
yet Im still having spells, in one right now, every couple weeks lately. Same cycle.
Its more like restless body lol,
chatgpt told me to test for herpes, so I came looking for hhv 6 and found this group, yayy. Id never heard of it.
I don’t really have an answer for you, but just wanted to say how sorry I am that you’re suffering like this and no doctor has helped you! To me, it sounds like you have multiple things going on and each one needs to be treated. It could be hormones, it could be Long Covid or it could be a thyroid condition with Hashimoto’s or a combination of all! Good luck on your health journey!
Hi @2yorkiesmom ,
I’m so sorry you’re struggling to find answers. I totally understand because I’ve had ME/CFS for almost 40 years. Mine,as did a many others with ME, began with an acute EBV infection. I was bedridden for months and it took awhile and a lot of tests to get a diagnosis. But as someone else commented here, your symptoms could also be caused by a number of things. If you’ve experienced disabling fatigue for more than 6 months, with no explanation, have you considered ME/CFS? It is a very complex multi system neurological disease that can affect every bodily system. It’s very much like Long Covid and some researchers think the two may be the same. Unfortunately there’s still no definitive test so it’s a process of eliminating all other possible causes along with a symptom checklist.
Here’s a quick survey you can take to see if anything rings true for you. Wishing you all the best.
https://solvecfs.org/me-cfs-long-covid/do-i-have-mecfs-quiz
@db72 , i was diagnosed with me/cfs 30 years ago, i have thyroid disease, HYPERPOTS, ehlers danlos etc. its the cycling thing that is kicking my butt. it hits, i suffer, we do it again. no answers/ideas to why it hit so hard, and has been happening for 5 years.
@2yorkiesmom oh gosh, I’m sorry 😢. I also have a string of comorbid conditions too that have all gotten worse with aging.
I hope they can get it figured out for you.