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@acapulcoheart

I was diagnosed in May 17 with EBV Mono. Dr. said maybe 6 months and i am still experiencing fatigue. I am 56 yrs old . It has changed me completely, im always tired so i try to plan very little anymore. My body is in constant pain anymore and I think it is due to Mono. Every muscle aches on me besides the arthiritis in hands feet etc. I prefer to sit still and not move , this was not me prior.
Who should i see , does this sound the same for someone else?

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Replies to "I was diagnosed in May 17 with EBV Mono. Dr. said maybe 6 months and i..."

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

@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.

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