Is chronic reactivated EBV different from chronic active EBV?

I posted several things about alternative options already and some might help for long COVID as well, I am not sure I do not have experience with that.

I did mention moving caca around but seriously this is very important. You do not want bits and pieces of this virus sticking around too long after you killed it. It is good at creating autoimmunity. So helping the body clean itself is important (good food, vitamin c, good levels of glutathione, moving enough of the lymph to circulate well, liver health, avoiding too much environmental toxins etc). And yes good pooping is number one of these processes 😆

I just re/read your post. You are at a stage where I think you can do something about it. You will not die, I am thinking about you.

If your doctor thinks this is compatible with your treatment I strongly advise giving monolaurin a shot. (Start super slow) lauricidin is my fav brand. I trust lauricidin very much.
It might take time and you should take your time. Go super slow and build your dose up. Lemon balm and elderberry are very good tinctures if your doctor thinks you can add that.
Please looks into ways to support your immune system and help with inflammation and moving caca around. Do not just take your meds or supplements, you must attack it from all angles. I found it creates food interactions and until you regain tolerance you might find ways to eat that help you. There is a lot put there to give you ideas about food and supportive diets (but sometimes it’s very personal (took me years to be able to eat a few nuts, and it took me years to relate food and EBV)
Food is tricky with chronic illness because it requires money and energy and we have none.,
Vit D might help.
You can improve. I am rooting for you.

I so understand, have been diagnosed with reactivated EBV, one thing I do that has helped tremendously is increasing my D3 level from 24 ng/ml to 72 ng/ml. I took D3 10 IUs with K2 and Magnesium. By doing so my energy level increased, I felt like my old self. The downside is I pushed my limits and had a relapse, but really, haven't had that happen in sometime! Just watched a NOVA on bats and their immune system, amazing! Our bodies need D3, magnesium & zinc as the building blocks for interferon, our immune system. As for arthritis, you may want to research Boswellia. I am not a trained medical professional, just research for answers. Also, the D3 is supportive to the thyroid, I have hypothyroidism and those numbers have improved. Get your levels checked and talk to your doctor as to how best to supplement, you can and will improve if you support the immune system.

Hi! I tried to find you on SM because I see you aren't active on here. No luck. But if you see this please let me know how the diet worked out. Also if you could share your doctor with me please. I've spent 10 years being gaslit by doctors saying it's in my head. Finally I got diagnosed and want to find a doctor who is knowledgeable and supportive even if they are across the country.

Hi! I know you haven't been active hear in a while, but I'm praying you see this. Please tell me how to contact this medical professional / naturopath ! I've been suffering 10 years.

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!

Thank you so much for this! How are you doing today?

How are you doing now?

Did you see an improvement

Thank you all for your post! I have posted in the past in Chronic Reactivated EBV as I have suffered with it for almost 40 years! In my 30’s I came down with Guillian Barre’ Syndrome which they suspected came from EBV. Within a couple of years after recovering from that paralysis I was diagnosed with Reactivated EBV which began my long journey with Holistic medicine.

My GP or my Infectious Disease specialist at that time did not know how to help me. My Infectious Disease Dr. did offer to send me back to Duke University Hospital but I had already been there for months with the GBS and unfortunately I don’t think back then in the 1980’s anyone knew what to do about it. I was told to go home and rest!

I found a book by a Holistic Dr. called ‘Chronic Fatigue Syndrome/aka Epstein Barre Virus’ by Dr Jesse Stoff. It was a life saver and had very specific directions and protocols for supplementing and diet. I followed it religiously and within 3 months was feeling recovered to where I could be up ALL day and not a partial day. As long as I maintained the discipline of watching my diet and supplements I knew would help, I was able to maintain my Improvement. Then as I aged into my 50’s I let my guard down. Stopped the supplements, and paid little attention to my health. EBV came back with a vengeance and I have struggled with it ever since. I am now 70! @lovelovelove you are very correct! There are alternatives out there that will help but if you suffer from Reactivated EBV in a Chronic form, you must tackle this from ALL fronts and be diligent with your approach. Do not put yourself on the back burner of Importance in relation to your health, stress level, diet, rest and relationships. It all is Important!

Some of the medications and supplements I am on are Valtrex, Low Dose Naltrexone,
Lauricidin/monolaurin, Vitamin C, D3, K2, Zinc, Quercetin, B complex, Turmeric, probiotics/IBS Clear (yes the gut issues are real with EBV), Omega 3, CoQ10, and Ivermectin if I am in the middle of a cold or flu. I do not take any vaccines and was told by Duke Drs. Not to ever take any, ever again, so it doesn’t surprise me that the vaccine from COVID has caused issues with reactivating this virus. I have found in the last 6 months while being titrated up with LDN (Low Dose Naltrexone) that I have felt better than I have in a long time, even though my numbers are higher than they’ve ever been and I show I am in an active case of mono with every test. With that bit of information I feel like it is really helping the way I feel even though my numbers do not reflect it. They have dropped ever so slightly in the last 4 months, but are no where near normal levels! But I had a Dr. tell me once that this is not a sprint, that it would take time, so I pray that with each recheck of my titers there will be improvement.

Don’t get discouraged, just take extremely good care of YOU! You are the only one who can. At least when the Drs. don’t have the answers you can research and go the holistic approach to help some. If you can find a Functional Dr. to assist you in this journey you’ll be way ahead in your recovery. Prayers for you all! God Bless.