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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 break that down so they can attack the virus. Its an interesting read and just may be that last link in the puzzle to me feeling better.
For the last year I have been seeing a nutritionist and took an MRT blood test. You can google it. Too much info to say here. I stay away from foods that cause inflammation that creates havoc on our immune system, which in turn causes autoimmune diseases. Not only did I lose weight but my pain level has really improved. I cannot tell you enough that changing your diet is one very important step in attacking this awful health issue we all have. I became very sick after caring for my ailing parents who are now passed away. I, too, have been to many doctors and experienced the disappointment of nothing helping. My mom's numerous autoimmune issues ended up making her so very ill and I do not want the same thing to happen to me. I will update as I find out more information on my new quest -- NO MORE FIBRO FATIGUE!!
I'm almost positive reactivated EBV is what got me the diagnosis of FM and CFS.
Anthony Williams with the "Medical Medium" has a podcast on Mondays. It's through Hay Houseradio. Com. I get it through Facebook. He addresses the Epstein Barr Virus causing Fibro and many other illnesses. He also had some books out.
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!
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.
@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.
I listened to Dr. Hedberg's webinar on You Yube last night. Very interesting. I had a bad case of Mono (EBS) at age 15. I think this has plagued me as well as my genetics. My dad had RA and I first developed Sjogren's 26 yrs after Mono and the Fibro came later!
@A MyFibroTeam Member What treatments have worked for you?
I also read from a podcast by Anthony Williams on the Medical Medium about the Epstein Barr Virus causing Fibromyalgis as well. I had a terrible case of Mono when I was 15. 16 yrs later I was diagnosed with an autoimmune disease and then some years later I developed Fibro. After researching over the last couple of years more intensely for myself some of the pieces of the puzzle are finally coming together! It has taken years for some of these researchers to have an answer for theses mysteries. Thank goodness they were persistent to get some answers. I found that some of these researchers have the disease themselves and understand first hand.
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.
My mom had GBS. She had a host of autoimmune issues. Drs are stumped. I believe that because it has become a major illness for many women, it has now begun to be addressed. Research and reach out. I will post what info I uncover.
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