Treatment for chronic Epstein-Barr virus (EBV)

Has anyone on here with EBV actually been to the Mayo clinic? If so, I'm sure many of us would love to know how that went??? My wife is in bad shape and we are trying to get the proper referrals to the Mayo clinic, but would love to hear from real people on whether they were able to do anything for CAEBV.

When I contacted the Mayo Clinic and in the phone intake meeting, I told them all about my previous tests and my EBV diagnosis. About a week later after the phone conversation they indicated that with my diagnosis, there wouldn't be a place for me there. Afterwards I wondered if I had contacted them with out giving them my diagnosis if I would have been admitted. Being diagnosed with EBV was a road block. I have seen numerous doctors and had hundreds of blood and medical tests and this is the only diagnosis I was ever given.

You have a really good point about not disclosing any diagnosis. Your statement really made me think about how many times I've gone into doctor's offices prepared with a long list of diagnosed diseases (that I have proof of). Now since you brought it up, I believe I have been wrong to have gone armed with so many things wrong with me because I think that it's just so overwhelming for most doctors to handle and you made a great point about that perhaps if you hadn't disclosed your EBV to the Mayo Clinic, you may have had a better chance of being admitted. I truly hope that you receive some help because I know how awful it feels. Also, just a suggestion, if you can find a doctor (maybe an integrative doctor) to run some different tests on you such as M. Pneumonia, Chlyamdia Pneumonia, Babesia, Bartonella, Q-fever, Parvovirus B19, CD57, etc. just to make sure that you didn't pick up the EBV from a tick bite, it may be worth your effort, however like I said this is only a suggestion. I received Chronic EBV due to a Lyme tick bite. In any regard, I wish you the very best and hope that you find an excellent doctor and also feel well again!

Interesting. I'll bring it up to the neurosurgeon and the family doctor who is an internist. I already have autoimmune Hashimoto's thyroiditis since I was 30.

Hard to say....I've always been tired and needed a nap in the afternoon, since the age of 13. No blurred vision. Sometimes my eyes burn. No rash. The horrible horrible pain I had in December and January is gone. Still some aches and pains running through my wrists. Just annoying enough to rub it and in a little while it's gone. If not, Naproxen does the trick.

**From a Mayo Clinic Pharmacist**

**Hydrogen peroxide has not been proven to be a cure for any chronic disease. Hydrogen peroxide can be harmful and lethal if swallowed, inhaled or injected. Inflammation, ulceration, convulsions, hemolytic crisis (hydrogen peroxide can destroy our Red Blood Cells) and air embolism (air or bubbles in your blood vessels that cause death) can occur. The FDA recommends against using hydrogen peroxide internally because it can cause poisoning, chemical burns, respiratory paralysis and death. Physicians in Missouri, North Carolina and Tennessee have had their licenses suspended or revoked for giving patients IV hydrogen peroxide. There is no scientific evidence of benefit and a plethora of evidence of risk spanning decades when hydrogen peroxide is used internally by IV, inhalation or by drinking. Multiple deaths have been reported from using hydrogen peroxide in this manner. Here is one patients story https://www.cbsnews.com/news/a-prescription-for-death/.

Ozone is a gas that when injected intravenously has caused pulmonary embolism and death. It is rated as likely unsafe by TRC Natural Medicines Database. Ozonated saline has been known to contain toxic amounts of hypochloric acid. Ozone therapy has not been found to cure any chronic disease.**

@lynnieb1 Hi there. I tried the ozone treatment years ago (maybe 15) in Mexico (I lived an hour from Mexico, in Tucson, Az.). I had bronchiectasis at that time, but did not understand the severity of it at that time. A friend of mine had suggested that I try the ozone treatment. I felt so bad and desparate at that time; that I tried it, although I was somewhat skeptical. I have to admit, I did feel invigorated afterwards. It was expensive and I did not continue with it.

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!