I applaud your positive attitude and dedication to helping yourself. You’ve inspired me to find my MM book and make another attempt to follow that path. Thanks.
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I hesitated going to Mayo for over a year because of the fear of how expensive it would be, but I put it in God’s hands and everything fell into place. Faith has so much to do with how we handle our illnesses and carry ourselves through the search for answers. Best of luck to you. Please feel free to ask me anything about my illness, life with my illness, experience with Mayo, or anything else that could help you in your journey for answers. Thank you for your Happy Thanksgiving wishes. I hope you didn’t do as we did and eat way too much! Prayers for you as we approach the crowds and stresses of the holiday! If you don’t post again, Merry Christmas!
Your story is very similar to mine except for the Lyme. I️ am make and 54 years old. I’ve suffered from EBV for about 20 years, but was diagnosed maybe 10 years ago. My other diagnoses included hypothyroidism, adrenal fatigue, chronic fatigue syndrome, low testosterone, and the list goes on. My doctor is wonderful. She is an internal medicine doctor who specializes in infectious diseases. She’s in Houston, Tx. After seeing her several years, she supported my going to Mayo Clinic in Rochester, MN. To say it was my last shred of hope would be an understatement. Mayo doctors saw me for almost three weeks running tests after test. Initially they explained that they don’t believe Epstein Barr Virus is a chronic illness. However, the doctors agreed the virus could be the cause for my poor health. So this team of doctors took me off five of my medications immediately. They retested my blood, and all my previous diagnoses were proven to be either incorrect or had improved. My official and only diagnosis is Idiopathic Hypersomnia, which was one of my previous diagnoses since 2013. Mayo docs didn’t bash my other doctor, but instead applauded her for thinking outside of the box in an attempt to find something that would help me. They explained that lab companies often sell doctors the idea that they have a test for this or that symptom and that doctors are hopeful when they use that test on their patients. I’m convinced that EBV invaded my body and caused damage to various organs but is no longer the issue. The biggest issue was all the medication prescribed. I’m now taking prescribed stimulants to help with my fatigue and extreme sleepiness and cholesterol medicine. That’s it! My health is better than it has been in years. My life was put on hold four years ago with failed treatments, early retirement because of the inability to work, and literally tens of thousands of dollars in bills mostly health related. I’m not saying your symptoms aren’t real or that your diagnoses aren’t correct, but my story is so much like yours that it could end in a similar way for you as it did for me. My Houston doctor’s name is Dr. Patricia Salvato if you’re interested. It’s also my recommendation that you visit Mayo Clinic in Rochester, MN. Start by contacting the internal medicine department and getting an appointment. Be prepared to be in Rochester for a few weeks. Lodging is affordable. There are tons of hotels with various prices, Airbnb places are everywhere, and campgrounds cater to Mayo patients. My wife helped me take out travel trailer from Texad to Rochester so we made a nice vacation out of the experience. Autumn Woods RV Campground was very nice. Please call Mayo. They made my life so much better, and they can for you as well. Please keep us updated.
Mayo says it’s not a chronic virus. However, another doctor in Texas says research shows otherwise. Idk. Looking back, I’ve had these symptoms for 15+ years but was never diagnosed. I finally had to retire early because I would sleep all weekend and then make it to work Monday and Tuesday and maybe half day on Wednesday. Then I’d start all over after sleeping Thursday, Friday, Saturday, and Sunday. Mayo dismissed many diagnoses and I am feeling better, but it’s a total management thing. My daughter is better than me. Doctor says it’s because of the age. I wish your son the best. I highly recommend a visit to Mayo! I’d be glad to talk with you more about our symptoms and various treatments we have tried.
Sorry to hear about your son. Both my daughter and I were diagnosed with EBV about six years ago. She struggled but did complete her doctorate degree. I continued working, but had to finally retire four years early in 2014. I’m convinced EBV caused me to need a pacemaker and infected other organs of my body. However, with lots of doctor visits and numerous treatments, I’m now able to participate in more family activities. This illness is very much a management issue. If you haven’t read the Spoon Theory yet, google it and you’ll get a better understanding about how your son feels. My daughter works full time but is exhausted. She spends at least one day of the weekend sleeping although she gets 8-10 hours a night during the week. I sleep 8-13 hours a night and sometimes take naps during the day. We both take prescribed stimulants to keep us functioning during the day. My lifestyle had to change drastically because retirement fixed income and my stamina to do anything physical is so low. However, I have improved greatly these past three years. I went to Mayo Clinic in August. Although they don’t recognize EBV as a chronic condition, they were able to rule out many other previously diagnoses and took me off most of my prescriptions. I highly recommend going to Mayo in Rochester. They won’t stop searching for answers until they have found them.
Hey Justin. I didn’t use Mayo’s concierge services. I found the RV park through Google and didn’t have any difficulty getting to and from the park and the clinic. I did check out the service,
though, and decided I had everything covered.
Hello everyone! My last post in July said I was headed to Mayo Clinic at their Rochester, MN campus in August. My wife and I spent three weeks in Rochester with me going to appointments. I can’t say enough positive comments about Mayo, the doctors and staff, and the residents of Rochester! After numerous appointments, tests, and changes in appointments, the final result is a primary diagnosis of Idiopathic Hypersomnia. At first, I was was disappointed that Mayo doesn’t recognize Epstein Barr as a chronic condition. However, their explanation made sense to me, and I am willing to accept their idea. I had been previously diagnosed with IH,
But Mayo made me feel better about my doctor and his treatment. Mayo doctors also didn’t confirm some other diagnoses from my local doctor and took me off five medications immediately. I am feeling much better since I stopped taking medications that my body didn’t need. The Mayo doc also sent my local pulmonologist his recommendation to revamp my medication dosage and/or change my medication to allow me to be able to stay awake better. Treatment for IH is just treating the symptoms…stimulants to keep me awake during the day. I see my local pulmonologist next week. Mayo also found a small issue with my pancreas, which I will be contacting a gastroenterologist locally for that. So do I think EBV is real? Yes! I also blame that virus for my IH, which the Mayo doc said was possible but it can’t be determined. I still have a little brain fog and pain, but nothing like it was before my Mayo visit. I recommend anyone who has ongoing health issues to make a trip to Mayo Clinic. Insurance is accepted, and lodging options vary according to your budget. We opted to take our travel trailer because of the length of time we would be there. Autumn Woods RV Park provided us with everything we needed. I am still curious how this plays out. IH isn’t curable, but it is manageable somewhat. I will be keeping up with everyone on here, and I appreciate everyone’s concern and prayers during my trip.