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Wed, Feb 6 9:41am · Basal ganglia hemorrhagic stroke with white matters disease??? in Stroke & Cerebrovascular Diseases

Hi there- My son has chronic epstein barr that caused a lot of damage to his body, including hi autonomic nervous system. He is seeing a neurologist in Memphis at the Semmes Murphy Clinic by the name of Debbie Turner. She only specialized in the autonomic nervous system and has treated many people with cognitive issues, alzheimers, MS, Pots, etc.

Aug 31, 2018 · Treatment for chronic epstein barr in Infectious Diseases

Hello, thank you for the kind words. It is very hard to see a teenager struggle with this horrible illness and has been for 3 years now. The name of his neurologist is Debbie Turner at Semmes Murphy Clinic in Memphis, TN His autonomic dysfunction caused by the EBV seems to be improving with Alpha Lipoic Acid that she put him on last November. However, the chronic fatigue is still debilitating for him and he still deals with feeling sick often…. there are good days and bad.

Aug 6, 2018 · Treatment for chronic epstein barr in Infectious Diseases

Hi there- I purchased the monolaurin last year, but his neurologist has him on a few different meds right now to try and reverse the damage to his Autonomic Nervous System from the EBV…..So, I didn't want to mix this in at the time. When he starts coming off some of the other meds, we will definitely try the Monolaurin. I have read a lot about this and how it helps some people with the virus. Thanks so much for sharing and I wish your daughter well! It such frustrating illness for such a young age!

Jun 19, 2018 · Treatment for chronic epstein barr in Infectious Diseases

My son has not tried any antivirals. The ALA reverses the cell damage that the EBV has caused. It is a slow process, but seems to be improving my sons symptoms over time. He does still struggle with the fatigue, but his Neurologist feels that this will improve over time as his adrenal glands start working properly. This virus completely dysfunctions your autonomic nervous system, which in turn causes so many horrific symptoms

Jun 14, 2018 · Treatment for chronic epstein barr in Infectious Diseases

Hello- My son has been dealing with CAEBV for over 2 years and had to be medically withdrawn from his University this past fall, due to chronic illnesses and re-activation. He has gone to Infectious Disease and Immunology Doctor with no help. Our Internist referred him to a Neurologist that specialized only in the Autonomic Nervous System. After she performed a ANSAR test on him, she determined that the EBV has done significant damage to his Nervous System causing all of his horrible symptoms (Migraines, Chronic Fatigue, Chronic stomach aches, Blood pressure and Heart rate issues, Blood flow and clotting issues,dehydration,Insomnia, brain fog, etc) She has put him on Alpha Lipoic Acid (a natural supplement) that is slowly reversing the damage to his cells and healing his body. He is also on a few other meds to control some of the other symptoms while his body is repairing itself. He is slowly coming off of those, but will stay on the ALA long term. He goes for follow up testing every 6 weeks and the last two tests have shown significant improvement with his heart rate and BP issues… his migraines have almost dimensioned and his stomach issues are much better. His energy level has gotten better, but still is struggling with Insomnia at times. He has enrolled back in college for the fall.

Mar 5, 2018 · Treatment for chronic epstein barr in Infectious Diseases

Hi there- I am sorry to hear that your daughter is also going through this. It's a horrible illness that is such a grey area for Doctors, it seems. My son is currently seeing a neurologist that specializes only in the autonomic nervous system. She is well aware of EBV and CFS. After being tested several times with a tilt table test and ANSAR test, it shows that his parasympathetic is not working properly. She said that the EBV (along with possible other stress factors) has damaged his autonomic nervous system. She currently has him on Alpha Lipoic Acid to reverse the damage, Mestinon for his heart rate variability issues (showed up on testing), Florinef to help keep sodium in his body (he can't stay hydrated) and Northera, which he just started on Friday (for orthosataic hypertension and help adrenal glands kick in when not working properly) This has been a trial and error with meds. since November, due to him having some side effects with some other meds. She wanted to do IV therapy with the Alpha Lipoic Acid, but can't due to blood clots in both arms from a hospital visit last year. I want to try the multiple IV therapies out there that seem to help some people with EBV and CFS, but can't consider due to this issue. It makes perfect sense to me about the autonomic nervous system and all of his systems being related to this, so we are praying that this drug therapy helps him at some point! He has been home from school since October and has hardly left the house (except for doctor appointments), due to the Chronic Fatigue debilitating him. He also has GI issues, chronic headaches, insomnia, low body temperature and the list goes on. He has had extensive testing from infectious disease and immunology, so this is our last resort. What kind of testing has your daughter had, so far?

Feb 26, 2018 · Autoimmune Diseases and Fatigue in Autoimmune Diseases

We have tried to get our son an appointment at Mayo several times and he was denied for Epstein Barr?

Feb 26, 2018 · Treatment for chronic epstein barr in Infectious Diseases

My son has had every possible test done by immunologist, infectious disease, internal medicine and neurology. The only conclusion that any of these Doctors came up with, was the neurologist. She said that his autonomic nervous system has been damaged from the EBV, which is causing….. adrenal fatigue, orthostatic hypotension, heart rate variability issues, GI issues, headaches. She started him on Alpha Lipoic Acid back in November to reverse the damage and has been experimenting with drugs like…. Mestinon, Midodrine, Florinef and Bethanechol. He couldn't take the Mestinon, due to loss of appetite and loosing weight. Nor could he take the Midodrine, due to it raising his blood pressure too high. She has now started him on the bethanechol and will be adding in Northera soon. He still takes the Florinef, as well. His fatigue has gotten even worse than it was when we brought him home from school and I didn't think that was possible. He has no life at 18…. doesn't feel like doing anything and never leaves the house, because he's so week and tired. He just never feels well. His Neurologist keeps telling us that it will take time with the meds, but she is confident that she can help him. She has a proven history of treating past patients with the same illness. It's hard to be optimistic about any treatment at this time, because he has been dealing with doctors and the runaround for over 2 years now. How are you doing with the illness?