← Return to Treatment for chronic epstein barr

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cummings3 (@cummings3)

Treatment for chronic epstein barr

Infectious Diseases | Last Active: Jul 5 7:54pm | Replies (562)

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@donnamarie

Hello to all. I’m 56 years old. i’ve had Lyme disease 23 years -not diagnosed until 12 years later. Infectious disease specialist iNY diagnosed me with Chronic Epstein barr. Moved from MY to SW FL 8 years ago. Always positive for Epstein barr and mononucleosis. Have seen a DO/Naturopath 3 hours away since June 2016. I can’t find an MD where I live for help. I’ve been to at least 15-20, including infectious disease. I have been treated as if I’m looking for attention, a s if I’m deceitful, a hypochondriac, that I’m mentally ill and there have been comments and questions about my marriage with my husband sitting right next to me, holding my hand, obviously upset and scared for me. Please don’t think that I’m arrogant but I’ve had to become my own advocate due to all of the above and this is with files of documented evidence of how very sick I am and I know something is very wrong with me.DO doesn’t accept insurance, has pushed all of his own products and in house servicest, hasn’t helped me, has helped himself to housands of dollars that I can’t spare, not going back. I have so many ongoing infectious bacterial and viral, mold toxicity etc but just sticking with Epstein barr. I’m so scared, I need excellent medical care by a kind and patient MD but I don’t know where to I turn. I so much want to be the energetic, vivacious woman that I used to be. I don’t understand why MDs, family and friends etc would ever think that those of us in this condition are really not sick. And nobody has to tell me or test me to confirm how ill I am, I can feel it inside the body that I have had for my entire life. If anyone can please give me direction I would be so grateful. 2013 memory testing showed decline in cognitive function. Beginning in early 2014 began having black out episodes while driving. December 2014 had to stop working and apply for disability, grateful to God I received it in 6 months. Stopped driving. June 2015 began forgetting episodes in my life, my husband had to stop working because I was falling, losing conciousness, much more. December 2015 became totally exhausted. January 2016 rapid decline, always sick (pneumonia June, July, August and bronchitis 4X). January 2017 stopped being able to take care of my home, can’t even walk one block, so tired, so desolate, spend most of my time on the couch or in bed. 2 weeks ago, unable I can’t eat anymore, abdominal pain so bad, bloating,. CT scan normal Vomiting began a year ago. Gastro did his tests, his diagnosis I’m nuts. And he knows that I have severe gastroparesis and a serious small bowel to large bowel motility issue.I began entire body shaking about 3 weeks ago, no changes in meds. Also I feel really strange as if something is frightening is happening in my brain. Its hard to explain. My entire body is in pain. I’ve no stranger to pain but this is different. All my lymph nodes are swollen and I keep testing + for dehydration, among so much more. Difficulty using my hands. EMG testing i2006 abnormal, automatic system testing abnormal 2009. Can anyone please help me? I feel alone and confused. I am seeing my Neurologist next week. He is an excellent M.D. Thank you all for your time & patience.

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Replies to "Hello to all. I'm 56 years old. i've had Lyme disease 23 years -not diagnosed until..."

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.

Have you tried
Natural remedies and restricted diet. These really help
Plus positive happy thoughts and friends are invaluable!

@donnamarie has your doctors ever tested your immunoglobulin levels especially if you are getting bacteria and pneumonia infections?