@cummings3 has your son's immunoglobulin levels been checked by an immunologist? Have these tested for bacteria when he gets infections? Please see my reply to @jonnybear619 below about my case.

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?

Hi. i'm so sorry about your son. my daughter is going through the same things. we have talked with her pediatrician but they aren't very knowledgeable. is the neuro you see also an naturopath? any information you can give me would be great. we are willing to travel for any kind of help. Do you mind sharing some of the information? you can PM me too. thank you for your help

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?

That great your son is getting the help he needs! I really hope it works for him. We live in a smaller town with not very many doctors. And unfortunately none of them are very knowledgeable. Do you mind sharing some information about where your son's neurologist is? We are pretty desperate at this point and would really like some answers. I'm not sure if you are allowed to post the doctors names on here but feel free to email me if you can. Thank you so much for your help. A lot of good information!

@cummings3 and @melissavaughn Have any of your providers considered a type of atypical anaphylaxis? Low blood pressure, headaches, etc can all be symptoms. Go to
emedicine.medscape and look up article 135065. It won’t let me post link here.

Hello my daughter is 18 and she has Epstein Barr on and off acute it's called. She also has whip lash and mild scoliosis I have been taking her to get acupuncture and massage therapy helped some
I have found something that is helping her feel more energy and more alive and I want to share it with you both items are purchased from Amazon it's called natural cure labs Monolaurin 600mg and immune support with l lysine and 16 vitamins minerals and herbs. She has been on it for week now and she immediately feels a big difference. Please note she down not take any other vitamin or medicine too much vitamins are not good so she only takes these two and she feels so much better. My heart goes out to you and your son I hope this helps him please let me know if your results if you try these

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!

@jean2018 - What brand of L-Lysine do you use? I found Natural Cure Labs Monolaurin, thank you so much for the information.

My naturopath has me on Monolaurin supplement called "Lauricidin" - 3000mg of Monolaurin a dose. I take it 3 times a day. Have been doing it for about 6 months and feel like my energy is better. She says I will most likely need to take indefinitely. I also just began a prescription of Acyclovir to prevent the EBV virus from multiplying. These seem like they are helping and I don't feel as fatigued overall. Hope this is somewhat helpful!