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DiscussionIs chronic reactivated EBV different from chronic active EBV?
Infectious Diseases | Last Active: Oct 9 4:22am | Replies (221)Comment receiving replies
Replies to "I was diagnosed in May 17 with EBV Mono. Dr. said maybe 6 months and i..."
@christinemorse I hope you are feeling better. Have any of your doctors recommend treatment for the EBV?
I have Hashimoto's, which is an autoimmune disorder that attacks the thyroid. I recently started seeing a naturepathic doctor who ordered a battery of tests. It turns out I have reactive EBV. There's a connection between EBV and autoimmune disorders like rheumatoid arthritis, Hashimoto's, and about 100 others. I also have chronically low vitamin D which is known to play a part in both reactive EBV and autoimmune issues.
My Dr has me on antiviral medication, an assortment of supplements that will not only help the antiviral medication but also help calm and relax my body to ease stress (a big trigger), a specific workout plan, and my diet has been overhauled. He has cut out all gluten, grains, dairy and sugar. His belief is that since the immune system is in the gut and I have autoimmune issues than I most likely suffer from something called leaky gut which some doctors believe triggers EBV. So far so good but the antiviral medication is very expensive even with my insurance ($200 a month).
What antiviral did your doctor put you on? How long have you been on it? Is it your family doc that prescribes it or a specialist? And most importantly, is it helping? My doctors have never suggested antivirals most likely due to lack of knowledge.
@acapulcoheart Years ago I had Mono the Dr put me on B vitamins and bedrest for 3
weeks I cant remember any other meds just Vitamins B in particular
I’m so relieved I found this chat room. I’m 55 and was diagnosed with mono last Nov 2019. I had a crazy busy month that month and tons of stress going on in my life. Lay around for a month and worked the odd day. Started to feel remotely normal and then unfortunately had to move house! That set me back. Exhausted and back to laying down. Then 3 weeks after moving I moved my daughter up to LA from OC and that put me even further back. Not all the same symptoms thankfully no panic attacks or the degree of a achy limbs but upset stomach and tingling in my legs and fatigue. It’s now April 11th and no way can I exercise. A walk to the car and a brief store trip is all I can do. Doing housework is enough. It really messes with your head!! Now we are in Covid 19! All the more reason to stay back inside and no way can I get checked out by the doctor. I’m making turmeric and ginger shots to have first thing and trying to continue to eat fresh foods etc!
I’m scared to think that there’s no end to this thing!!!
same for me,ive had it for years now with realizing my armpits hurt around smoke alot worse and burns to lift my arms and feel really sore after moving much, 1 shot of dexamethasone shot made my throat pain go away for good though but still left with the pain for 5 years. Sometimes suicide feels like the only option.
Please see my post below for alternative options and support. There is a wealth of (reasonable) information out there about improving. Always talk to your doctor before adding anything and always start slowly if you add a supplement.
Lauricidin is an excellent antiviral to start with.
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, 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!
Sounds exactly like me. I have an awesome PCP who listens and acts. Symptoms began before April but then intensified so I knew something serious was wrong. He ran labs, then referred my to a rheumatologist and then to a Oncology/hematologist in the department I actually work in! I had horrible unexplained bruising all over my body, they just appeared. Diagnosis: Chronic Reactivated EPV. I would start with finding a good PCP. If I didn’t have a good Primary Care Doc I would likely have a mental breakdown as well. He told me today that this illness could last up to a year or become Chronic Fatigue Syndrome which lasts forever. I hope to hear more from you as your symptoms seem so similar and I’d like to hear how you’re managing. Blesssings