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After doing quite a bit of reading on it...I found that it is basically mononucleosis (Mono) that most kids/teens get and usually goes away but in some people it can stay dormant in the system and come out after another illness or some trauma and the effects of it mimic FMS symptoms..I am planning on getting tested as well as Lyme disease as I saw a post that someone was diagnosed with FMS for 20 years and just found out he had Lyme disease..I can't find the link I was sent by my cousin, who is… read more
Answer Summary
Members shared their experiences with Epstein-Barr Virus (EBV) testing after learning that the virus, which causes mono, can remain dormant... Read more
Going through this now!! I have had it several times and this time was he worst!! Never feel like I get over it but during takes of reactivation it is AWFUL!! I personally believe it is the cause of all of my issues.
I was tested by a previous doctor and was told it just positive due to bad mono at age 45
I'm going to ask about it next trip. Thanks for info.
@A MyFibroTeam Member, LOL!! yes I too almost put it down and thought oh boy...no way will Ibe able to get into this!! :) Istarted with the lemon water and honey 1st thing in the morning, and we bought the celery but this round of mono seriously kicked me down, we are considering a dietician appointment, as I have the MTHFR gene mutation and was told to stay away from B vitamins, have osteopenia but calcium level in blood was high so told not to take calcium and watch consumption of it as it is being pulled from my bones. I want to put it back...so many different opinions and I am afraid to eat. Unless it is whole foods it is full of preservatives, GMO's etc. I dont eat meat so I feel stupid that I need to be told or shown what to eat to benefit my body with the wierd issues. It has been made so easy to just to grab junk in a box and it be ready with no food prep in a matter of minutes!! Also alot of supplements to take in the book $$$ and no idea how much of what to take. I have learned that we have to be our own advocates and we know our bodies, sometimes they do not listen if you have fibro in yoour chart and assume it is just the fibro. Luckily an internist discovered the CEBV for me and now have referrals to new rheumotologist and endo that are suppossed to be really good. I pray so!!
Mine come on as "flares" and I stay sick...very sick (maybe because I am older) but was always told FM, I was just tested for mono in November and was in an active phase. My labs levels were and will always stay what the internists says it not high but pretty high. After 7ys I feel I have a better idea of what is wrong with me and although I may have FM, I believe the root to the illness for me EBV. Although there is no treatment it is good to have a reason for why I feel the way that I do. FM is bad...add mono to it and its too much!!
@A MyFibroTeam Member Either you or doctor were way ahead of the game...I just found out about these and I had to tell my doctor..he agreed that it was a good idea to get the test but wondering why we all are not tested for anything that might mimic FMS...since the only way to diagnose is to rule everything else out.. :/
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