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Real members of MyFibroTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Has Anyone Found Research That Shows Fibromyalgia Is A Result Of Epstein Barr Virus That Can Lay Dormant For Years?

Has Anyone Found Research That Shows Fibromyalgia Is A Result Of Epstein Barr Virus That Can Lay Dormant For Years?

I read a transcript of a pod cast by Dr Nikolas Hedberg on Autoimmune Disease. Wow! they could have been talking exactly about me! He states that there is a definite link between Epstein Barr virus (and others also) and autoimmune disease. There is a test that can tell you if you have EBV but it needs to be run a certain way and the Dr must read the results a certain way. I will be giving my Dr a copy of the transcript next week. EBV is an incapsulated virus and there are medications that… read more

over 6 years ago
A MyFibroTeam Member

@A MyFibroTeam Member. I started out with an autoimmune diagnosis called Sjogren's. So I have been treated with a DMARD drug called Plaquanel for inflammation. I have been on arthritis med called Relafen. Taken these 2 for years. I have been on Neurotin and or Lyrica (depend on insurance pay) over the last 8 years. I take Zanaflex at night for rest and muscle relaxation. That's all the RX Meds I take. I try to get by with minimal amount I can. I take lots of supplements such as VitBcomplex, Tumeric, Magnesium, Multiple Vit, VitD, Stress tabs, VitC, Calcium. I try to eat balanced diet. I am trying to decrease my gluten consumption, decrease milk consumption. My down fall is sugar! I struggle with that one. I am walking about 3 miles 2-3x a week and do some strengthening excercises when I can. A lot of of I do depends on the day I can physically do this. I try to stay as active as I can. I occasionally take Tramadol for pain if I have to, but do not like to. I use arnica cream on my tender points and arthritic areas or a Lidocaine patch if needed. I have developed many tendinitis and arthritic problems in the last 26 yrs I have been diagnosed. I have a strong spiritual life and pray to my savior Jesus. This all seems to work better for me.

over 6 years ago
A MyFibroTeam Member

Morehope..I've been thru that too. The Dr I mentioned above is in NC. He can take me on via Skype. I am researching and will let u know what I find out. If I am positive and there is a proven way to treat it, then I will consider my options. Medical community is beginning to open their eyes. Slow moving for those of us suffering.

over 6 years ago
A MyFibroTeam Member

Never ever had it (Mono). But I understand almost everyone carries virus and it's dormant. That said, be careful about what you WANT to hear because when I posed this question to my doc, he said not a chance. We are all frustrated and would love to connect dots and make it make sense. Not everything does. EB virus is very specific and while doc lost me on the different viruses, he knows which ones exist under which circumstances and said its hands down a no that fibro other autoimmune diseases are related to EB. I trust and believe him. Very educated guy. It's that simple. The mere fact that this revelation HAS NOT broken the treatment and diagnosis world wide open tells me it doesn't hold water. A study or two doesn't make it so. If they are on to something, more power but if it were that important, the pharmacy folk and doc's would be crawling all over it and I don't see much noise. So I'll wait and see.

over 6 years ago
A MyFibroTeam Member

I can share that I had Epstein Virus when I was a teenager and it went away; then I developed hypothryoidism, and then bipolar type 1 disorder, and now I have gotten my Fibromyalgia diagnosis after waiting a year and 3.5 months to figure out what's been going on with my body. I'm one of the lucky ones.

Most people have to wait many years to get the Fibro diagnosis. It's only because I kept going back and insisting on more tests, blood work, referrals to a specialist and Pain Management Clinic that I was able to get the Fibro diagnosis this fast.

I am so grateful that I am one of the lucky ones and that what I've known all along to be true has finally been officially diagnosed (as of January 15, 2016) and confirmed.

I will be researching the EBV link to Fibro thanks to your post. Thank you for sharing.

over 6 years ago
A MyFibroTeam Member

Thanks @A MyFibroTeam Member your answer makes sense. I have been researching and researching trying to find some cause that can be reversed so I can have a normal life again. I am at the point where I will wait until the medical community comes up with something and spreads the word. I'm sure it will be big news!

over 6 years ago

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