Active Epstein-Barr Infections Found in Large ME/CFS Study

[wyva]

That's really interesting that you got much better after the second year too. I wonder if that's just coincidence or if there's a reason why it improved for the both of us then. Did anything change for you around that time or did you do anything different that might have led to you seeing a decline in your symptoms?

No, there was no change in my life in any way during my illness and I have no explanation for why I got better. However, I probably explained it poorly, sorry about that: it wasn't a sudden improvement, but one with many zigzags and relapses, yet in general it was slowly improving all through my illness. Very-very slowly, I could only see the change when I compared myself to my condition 4-5-6 months earlier but it was there. I only used the roughly 2 year mark because it was around then when I think I transitioned from moderate to mild and that is when it became even more obvious but it was a longer process. Unfortunately the improvement stopped after about 3 years, so I'm stuck now. (I think I'm responsible for causing this by thinking I was finally returning to normal and became too eager to travel etc.) It's only my fifth year, so I always wonder what the progression will be later.

Btw I remember I used to prop my head with my hand in front of my laptop the same way you do because there was no energy in me to keep it up otherwise. I'm glad that at least that is gone. But I feel you.

 

[Wishful]

Can you purchase tests which can distinguish between the different strains of EBV?

Maybe someone here is familiar with ways to get private testing. While medical science has advanced, it can be slow to actually reach patients in public health care.

 

[2Cor.12:19]

http://simmaronresearch.com/2020/07...iXIXMrnMwvPB2bAwRERpXtBiu_-3U_MWd3xKYrToYmBgQ

“EBV is an important factor for the development of the disease” in at least a subset of patients. The authors

@Treeman - My ME/CFS began 35 years ago with a severe acute EBV infection which I was told after being tested again 6 months later, had became chronic. Oddly, when I first got sick I tested negative for mono. I don’t remember getting tested again for EBV in later years, although I did test positive for HHV6 with significant titers later on.

I’ve tried two antiviral protocols (Valtrex and Famcycolvir) for about 9 months. Neither did anything for my ME/CFS except to make me even more exhausted. The one good thing from that was I didn’t have any herpes outbreak for more than a year.

I’ve always assumed that the acute EBV infection subsided but triggered the ME/CFS - maybe like COVID long haulers that no longer test positive for COVID?

 

[Slushiefan]

My humble opinion is that the disease etiology and the cause/effect relationship is not understood.

The deeper we dig down the rabbit hole in an attempt to answer those, the wider and deeper the range of errors becomes as we multiply a lack of understanding across body systems and processes.

I say this because in my case, my EBV titers almost 9 years ago now were high enough that I was automatically qualified for SSA as disabled. These were tested by Stanford.

I then followed up with nearly 3 years of Valtrex (and occasionally Valcyte),with absolutely zero improvement. I refused to give up though throughout that time. Eventually after some years, I developed what I think was an allergy to Valtrex, that whenever I took it I get an extreme headache. It coudn't possibly be a herxheimer reaction - because I never stopped taking it throughout that time.

Wish we had better explanations...

 

[bensmith]

@wyva same but with covid.