Hi Dunnamac,

So sorry to hear you are caught in the clutches of this nasty, under recognized, under treated virus. Unfortunately, the wonderful ND that I saw at Bastyr here in Seattle has retired. Truth be told, I haven't found anyone who could fill his shoes. He IMMEDIATELY recognized my ANA pattern as
EBV.

So the protocol didn't work for you? I must admit, I have had lengthy
reactivation's that have not responded well. I wish I could help you, but at
age 80 I am still searching and barely keeping my head above water.

I said in the last post that I don't take Valtrex. I do now, and just switched to
a different prescription anti-viral. I work with an ND who is a Bastyr
graduate, but it is very expensive. Vitamin C and B-12 via IV have helped.
I take so much other stuff, all thoroughly researched on multiple sites
then confirmed on NIH site. It has been really tough to dig out credible information, as you have probably discovered.

One bright light on the horizon is the new interest in EBV because of its
suspected close relationship to the Covid 19 virus. Some medical circles
are now saying Longhaul Covid is actually a reactivation of EBV - caused
by Covid. Many with LHC show very high numbers on blood tests.
Now we at least have some segments of traditional medicine believing
us, and researching what they have swept under the rug from the beginning.
Four years ago it was hard to find credible EBV information. Now I can't keep up with what I find every day. Everything I find I run by the NIH sites.
I believe in the Covid vaccinations, but three days after I had my final
booster, I had an horrible EBV reactivation. Of course everyone except my
ND thought I was crazy. She ordered the labs and yes - I was having a
massive flare up. It took six months for me to find that yes, "Long Vax"
is a thing. It's very rare, but it is a thing. I can never have another vaccination.

There is also a lot of "mix and match" with ME/CFS. (Myalgic Encephalomyelitis (sp) and Chronic Fatigue Syndrome) and EBV.
Some (including me) believe that CFS is actually driven by EBV, but very few
doctors know how to run the lab tests. My GP did not know, but ran them
for me as directed by Bastry so my insurance would cover the cost.
One interesting aside, for decades she has been "distant" from my EBV
claims, but now she has a number of LHC patients and believes there is a
connection to EBV. One more thing - I don't know how much research you
do , but I find I get different sites on my phone than I do on the computer,
so I use both.

I wish I could reach out and hug you. This is a nasty enemy we share, and I
well know how miserable you may be - and to top it off, nobody knows or
believes you! Keep the faith, and keep searching. Good things are coming
out more and more these days. Good luck!