Is chronic reactivated EBV different from chronic active EBV?

Posted by memecat28 @memecat28, Feb 7, 2018

I was just told I tested positive for all Epstein Barr Virus tests, except for the one that says you were recently infected. I was told I have Chronic Reactivated Epstein Barr Virus, and that I would be referred to an infectious disease doc. I started to research and everything keeps coming up with Chronic Active Epstein Barr, which seems to be a rare form and serious. Are these two forms different?

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suziejane555 | @suziejane555 | Oct 9, 2024

In reply to @fatigue001 "(Chronic reactivated Epstein Barr virus) is different than (chronic active Epstein Barr virus)? Correct?? Two different..." + (show)

Hi, so I have researched this as I have what I call CAEBV. If you have CAEBV in T or NK cells that's when it's fatal. Usually it's in the B cells, sometimes T in Western Countries. It still can cause different cancers even in B cell. I read if the EBV is active for longer than 3 or 4 month with high viral loads and it keeps reactivating then its CAEBV. Also they look at other markers like HPA axis disregulation, which means you have Chronic Fatigue Syndrome and may have several other symptoms connected to EBV

jaxkat | @jaxkat | Jan 21 8:25pm

In reply to @suziejane555 "Hi, it sounds like you have CFS, Chronic Fatigue Syndrome.Its actually a debilitating disease. It's beyond..." + (show)

Advice from my Homeopathic Dr. to drink celery juice, every day, helped tremendously with the inflammation. I lost 5 lbs of water, in one week!

anonymous620 | @anonymous620 | Jan 26 9:15am

My doctor said one is not infectious to others if the tests do not show a recent EBV infection. Also many who contracted COVID-19 show periodic EBV recurrence on lab tests, even if they have had COVID-19 a while a go. He tests regularly for EBV and tracks the test patterns fluctuation vs. how I feel and other vital signs to get at least some measurement on what is going on with fatigue levels, swollen lymph nodes under the arm, etc. I'm normally high energy, happy, and peppy, so this is definitely viral related. Doctor said no one knows why the one virus reactivated the other, nor what the cure is. It does appears cyclical, comes and goes like long COVD symptoms. What helps: Lots of exercise, don't fight sleep if you need to take a nap -- take a nap. Oddly, drinking sugar free tonic water helps, for some unknown reason, maybe the quinine? Lastly, Doc advises all his patients not to drink alcohol at all, it is not good for the liver and the negative effects are cumulative and worsen with age. (He said the French myth about a glass of wine a day being "good" for you "is a myth.")

kevinann | @kevinann | Jan 27 6:47pm

I have been formally diagnosed with Chronic Active Ebstein Barr, as well as Long COVID ~ the Ebstein Barr cause my liver and spleen to swell and caused damage to my gallbladder, which ended up having to be removed, found to be full of nodules .
My blood work is awful looking but the ID (partially retired) claims it's all just part of EBV. I am concerned about my blood work (CD 4 CD 8 ratio being very high) but feel like I have no one to answer my questions:(

Forlorn Theressa | @theressa | Jan 29 12:09pm

This is NOT medical advice, as I am not a medical provider.

However, I have persistent sarscov2 infection. This virus activates dormant viruses- like epstein barr and shingles.
Your symptoms do sound like many of the same symptoms that the millions of people who have “long covid”, or post covid sequela syndrome (pcss).
Most physicians do not know anything about pcss, as it is only a 5 year old disease.
You could ask your doctor about pcss.
Good luck.

1dopeyrarebird | @1dopeyrarebird | Apr 25 11:56pm

In reply to @lynnelee "I have CAEBV/CEBV. I have elevated titers...the one that should go down after six months is..." + (show)

@lynnelee

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.

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I'm enlightened by your treatment. Wealth if info. Thanks! I MIGHT be headed in thd direction of what you do, but from the opposite direction. My fatigue has been resolved BUT only AFTER thorough testing if my Thyroid gland on Ultrasound-my body canablized it, then T4, T-3, and even Reverse T-3 (so I replace by mostly taking T-3 TID, since T-3 wears-off in a few hours, but also so.e Natural, Armor Thyroid in the 30mg tabs, since theyare still made the old way. The Armor supplies the T-4 , which normally gets converted from TSH by the Thyroid, but with no Thyroid that can't happen, nor can the body's extra tissues than can minimally convert T-4 to T-3, so getting that in Natural form circumvent conversion issues in case of not having a Thyroid.)
Next, aside from the Fibro/CF Syndrome blanket Dx, my Doc discovered that I carry an Hereditary Hemachromatosis Gene BECAUSE at Menopause my RBC and Hematocrit started creeping-up in mh regular Labs.
But the most difficult to figure out was that my Pituitary happened to be Insufficient. The initial test was an Igf-1 Blood Lab. Since that was Low, a Pituitary Stimulation ("stim") Test waz scheduled. There are a few different kinds. The Insulin Tolerance Test is 'The Gold Standard' in the U.S.A. I waz given thaf one years after failing another Pit. Challenge.

Now, here's the rub for your Adderall. IT WOULD BE WORKJNG IF YOUR ADRENAKZ WERE HEALTHY. So, you could ask for an Adrenal Stimulation Test. I'd bet after this stage, you'd fail, since thd Adderall isn't working. OR if your Adderall isn't Methylated, your Liver might be the culprit for not methylating the drug. The form of Adrenal Stimulant that works with a sluggish Liver,
is Methylphenidate XR/Ritalin SR. The test to find out about whether your Liver does or does not Methylate is the MTHFR Gene test.
Getting back to the Pituitary. If you flunk the Pit Stim Test, they give you Somatropin shots/Growth Hormone. Paradoxically, once GH is on board, they never give you enough to have it in reserve to support the Adrenals, so GH therapy, which is very helpful in getting rid of generally serious fatigue😀, it "unmasks" any Adrdnal Insuffucuency! Tok much Gh can be bad, so the Gh can't cover the Adrenskz.
Thus is where it gets dicey: a Woman really can get bone loss, and even Glucose regulation issues (going up) problems from The Corticosteroud that your Endo will prescribed for usually SAI (Secondary Adrenal Insufficiency), or it could be as bad as needing a Cortisol Pump if one is AI (Primary Adrenal
Insufficient). THAT us where your Adderall Rx is giving yoj clues to reverse engineer your fatigue through the Endocrine testing. It will be worth the trouble of testing once you know for sure which Gkznc us betraying you and making you so tired. Godspeed!

fearlessgrit | @fearlessgrit | Apr 29 4:24pm

In reply to @memecat28 "I am. I complained of chronic fatigue to my doctor at my new patient appointment and..." + (show)

Justin i had similar issues with chest pain, i have reactivated ebv. My ferritin levels were severely low. After about 2 of the 6 infusions, my ferritin levels went up and the chest pain went away.

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