Is chronic reactivated EBV different from chronic active EBV?

I have CAEBV/CEBV. I have elevated titers...the one that should go down after six months is very high. But, the most important test is the DNA test...PCR. That is also high.

The way I just learned it is there are two forms of CAEBV...or Chronic Active EBV. CEBV, which is chronic, but not terminal. My rheumatologist says if it never hits my liver it just will make me sleepy all the time. Then there is SCAEBV or Severe Chronic Active EBV. Terminal, unless treated and cured by hemopoetic autologous stem cell therapy bone marrow transplant. It is usually due to immunosuppresent meds after organ transplant or severe immune deficiency, especially in kids (I have milder CVIDS or Common Variable Immunodeficiency Syndrome. The most common of the rare PIA's or Primary Immunodeficiencies. You may want to see an immunologist for testing. It causes decreased responses to hypervalent vaccines, chronic sinusitis, low IgG orIgM. I get 35 grams Gammunex IVIG over 3.5 hours with home health RN, at home every 3 weeks. It has resolved my chronic sinusitis and eliminated my frequent colds for over ten years. I am still horribly fatigued and sleep like 18 hours a day despite 60 mg Adderal (off label tx for fatigue, by psychiatrist) and Teacrine supplement an hour before I need to wake up for doctor visits, etc...they do help. Teacrine 100mg is on Amazon. If I just lay around, I can go back to sleep, but if I push myselfto get moving, they help me.
If you want my history...
I got mono at 16 years old. Almost died, doctor said. Was never well, anyways since maybe five years old.. Fatigue worsened over the years. Was a Veterinary Technician x 8 years, then LPN x 18 months full-time in rehab facility, then went to home health, then Private Duty, then part-time (once a week karaoke host x 7 years in there, somewhere), then non-gainfully as I fought to get SSI disability until unable to work, at all in 2007. I also have many other diseases. I used to have severe pain, but am way better on 10mg methadone two twice daily, 1 Norco 10 2-3 x a day, Botox every 12 weeks for chronic daily migraine and 10mg Compazine 2 every night, up to 4 a day which is an underutilized med for migraine pain, not just neasea. I have autoimmune adrenal failure, sero-negative RA rheumatoid arthritis, osteoarthritis, GERD or reflux with Barrett's Esophagus, frequent,idiopathic anemia requiring 3-4 iron infusions every 3-6 months, pancreatic atrophy (just found on CT, seeing GI doc soon), had Grave's hyperthyroidism as teen, then had radioactive iodine so am hypothyroid, osteoporosis, had Stage 4 endometriosis and in 2007 it atrached a loop of bowel to gallbladder causing weird pain doctors ignored for 18 months as I lost 45 lbs until I had it and ovaries and unterus removed and it was about to infiltrate bowel which would of been fatal, was left with nerve damage to right side, Small Fiber Neuropathy or SFN which was Hell and was misdiagnosed as Fibromyalgia for years, and I suffered a lot until methadone...was on 80mg total a day, but cut in half after keto diet and 40lb weight loss. Very low carb also helps my pain and heartburn. SFN is diagnosed by a neurologist with Autonomic Testing like tilt table and by 2-3 leg biopsies (arms, too if affected) sent to Therapath Labs, two versions...SGNFD or Sweat Gland Nerve Density Biopsy (mine was + and ENFD or Epidermal Nerve Fiber Density biopsy,mine was -...some labs only check ENFD so miss a lot of SFN!). It was awful, at first because two neurologists said I didn't have SFN so pain doctorsent me to shrinks. I called Therapath and a lead scientist said I did, then also a 3rd neurologist. I shattered tibia and fibula at knee about 6.5 months ago, regained 40lbs so just got back on keto. Bilateral, necrosis of humeral heads or shoulders on CT, due to chronic sterouds for adrenal insufficiency, but mild, no pain. Will probably be a decade before I need joint replacement. I am about to turn 57.

I do not know if anything is associated with my CEBV. I have read MS can be. I do feel like it impacts immune health so could have caused my autoimmune problems.

Oh, when I was on fentanyl the SFN began...before they got methadone dose high enough I got a lot of relief from PEA or palmitolethanolomide 400mg, three times a day with Alpha Lipoic Acid R fraction and a healthy fat like coconut oil...I saw a new version with luteolin added to boost relief...it is well studied in Europe for pain. I should get back on. Saving it if they ever cut my pain meds! It is a fatty acid that works on cannibinoid receptors and works even if medical Marijuana fails, also helps animals so not a placebo, which also don't help me. I used Vitality's brand.

When first Dxd ID doc tried high dose Valtrex. Since then, learned the only treatment is bone marrow transplant, but they probably only do it for SCAEBV not CEBV.

Heh, always type in email, then copy and paste!

Did you ever have UV light therapy? Any help?

Hi. I have all the symptoms you have and you feel like someone dropped you from a 20 story building. Ice cold night sweats, treated for low Vitamin D. Anemia, palpitations, neurological issues manifesting in my vision. It will be like I am looking at the sun with my eyes closed. Those episodes last about 10 - 20 minutes. I get shaky and my heart will start pounding and beating super fast then the palpitations come. Yeah. I feel for you. My doctor said there is no treatment and to see a psychiatrist for my symptoms. Haha. Yep. So I am in pain management. There is a support group called stuffthatworks.org and so many people have blown their life savings on naturalpathic/functional doctors that cost a fortune and they are all still sick. Some protocols may hold the disease back a bit, but inevitably it wins. I am sorry you are going through this. I am 48 and was just diagnosed in April 2023. It was almost a year of being sent to every doctor under the sun etc. Relieved to have a diagnosis and am letting nature take its course. Much love and try to stay strong buddy.

Thank you so much for sharing. I wish you good health.

How is Your CAEBV now ? Please Share

(Chronic reactivated Epstein Barr virus) is different than (chronic active Epstein Barr virus)? Correct?? Two different illnesses? CAEBV is a death sentence and very rare in the U.S. but drs are calling it that and shouldn’t be ???

I have had Lyme disease for almost 40 years - 12/13 yrs undiagnosed. I am still plagued with symptoms and the EBV came up in my bloods some time ago as highly positive. I am cautiously commenting that there seems to be a connection between the two diseases. If so, and now I am off of abx, but barely able to put in any effort or energy during the days nor sleep at night, might it be wise to start the medicine again. They are not looking for this in my bloods at the moment by my ”eminent “ Lyme literate PA.
YOUR COMMENTS please.

Hi, it sounds like you have CFS, Chronic Fatigue Syndrome.Its actually a debilitating disease. It's beyond tired or fatigue. Its comes from having reactivated EBV. I have it along with many other inflammation symptoms, I also have pain in joints that last for months, but nothing shows up on x-rays. I finally was diagnosed with neuropathy, dry eyes, carpel tunnel and more. Each "flare up" or new EBV reactivation I get worse, and the EBV stays active for over 6 months. I find myself chasing symptoms because DR's don't understand how serious CAEBV or reactive EBV is. I have realized when the EBV starts, so do all the same issues, The EBV creates inflammation, but that doesn't show up on scans so they say your fine. Im not fine, like you said this was not me prior. I have now realized I will never feel the way I used to. My quality of life is not good!