Soooooo Sick EBV

[lisajohn]

Hi been so very sick for 9 months now, running around having bloods taken, having vitamin drips, Vit b injections etc. after a very bad bronchitis in February, I was told ebv had reactivated. Been feeling awful ever since. I'm trying sooo hard, taking good probiotic, seen numerous Drs tried boosting my immune system pus taking dhea for adrenal fatigue. The antibodies igm for Epstein Barr have been fluctuating between positive and equivocal all year, however the pcr viral count ebv is undetectable. Now I have issues with sleep, brain fog, huge fatigue can't work, always feeling terrible. The flu like feeling has gone though, also the severe headaches and night sweats and swollen glands. I've seen two endocrinologists who say it is inflammatory now and not active virus so it's chronic fatigue syndrome. This is devastating. They recommend low dose naltrexone to regulate my immune system- I'm not sure of this yet, haven't started it. I'm currently seeing a homeopath who is giving me two Vit c drips a week, turmeric, something for body inflammation etc. has anyone here had similar experience to me who I could talk to?
Was a heathy 39 year old female until this.
Thanks

[lisajohn]

Hi I'm sorry to hear your ordeal. When your ebv reactivated did you get ringing in your ears, dizziness, huge fatigue, headaches, brain fog and insomnia?? It's a nightmare, I'm so scared I'll never recover. Did you recover and how long did it take you the first time it reactivated? I'm on 11 months now

[BessieAlice]

So sorry. I am debilitated right now from this and started getting chronically recurring bouts 4 years ago. My tests usually show a past infection but the titers are sky-high and I've had the symptoms. I don't usually have the full-blown mono with every symptom (did last year though) but it's still enough to keep me exhausted and in constant headaches, anxiety, etc. It has also caused severe nerve pain and neuropathy. I had severe mono in 7th grade and it took over a year to get most of my energy back and also had fevers all the time. Was diagnosed again in college but I'm sure was having more minor bouts somewhat frequently. After my first baby at 35, it was re activated and know my baby had it (in hindsight). I was severely tired. Then one died at 6 months probably from exposure in womb. Third baby healthy. I remained really tired and was a busy editor/mom. Saw doctors but the usual bs. Took adderall which helped then. Suddenly in 2012 I could barely get up and began long list of specialists and tests. Tested positive for Lyme and felt a little better after started treating but also had the high EBV and realized it was the main culprit. I notice when my headaches get severe and ears and throats glands hurt etc that if take antibiotics it helps. I've read that stealth infections like strep, especially, are likely found with EBV. (And this can hide anywhere, so a throat culture won't do much and they learn to evade the immune system and don't always trigger tests for infection--although so many doctors won't even treat when the numbers are there). So when your body is always fighting viruses (I also often get parvovirus and couple others) and infection, that can make you tired. Someone on this board talked about a Dr Nicholson (?) and I googled and read what he wrote on NK Factor for fatigue if you have EBV or autoimmune disease, etc. I have been on all the right herbs and vitamins for months/years and they don't help the fatigue, but I did take a supplement once that had this in it and I remember it was around that time that I had ONE DAY where I felt amazing, like I never have before. Now I wonder if it was the transfer factor, because he explained how the B cells get damaged and then replicate in damaged form. The NT Factor, if designed right, is able to permeate the cell and replace or fix the damage. My researching has led me to believe I am one of those who has a genetically deficient enzyme regarding the B cells, which is why I keep activating the viruses and can't get better. I googled NK factor and found one through Forrest Laboratories by the same company of what I'd taken before (except it was their Transfer Factor which has NF in it but probably much less).  The maker's site only allows doctor orders (I had gotten at naturopath-was expensive and didn't buy again). This was $55 but I ordered 4 to get free shipping. This is how tired I am. Will pay ANYTHING that really sounds like it can make a difference. You take two tablets a day. The brands on Amazon all seemed to require more, and I think this is a really good brand. It has to be formulated a certain way in order to survive acids and bile, etc. I also take all the natural antivirals I can. I wasn't doing this consistently for long enough, maybe, but recently got another sky high EBV titers after another bought of symptoms in summer. I used to have periods where could plant trees etc and have a few function hours per day with taking adderall. I'm now up to trying 60mg of adderall/amphetamine, extended release, and cannot get out of bed!!!! I think an infection has made this worse though and taking antibiotics. Have loads left from Lyme treatment and have ordered online without an rx. Take loads of probiotics, of course. Hopefully I will remember to come here and let know if the NT helps. Hopefully you just had one bout and won't get more and are still just recovering. It does take a long time!!!

[lisajohn]

Hi yes had a lot of bloods taken its all ebv now maybe Cfs......my iron levels are fine. Prolonged suffering. Have you had a similar experience? Only thing showing is antibodies to ebv although the ebv viral count is undetectable

[Peterbilt509]

Have you received all your blood test results and learned what they all mean ? Check ferritin levels.