Mayo Clinic Connect
My son has been suffering with this for over a year. I have taken him to an immunologist and infectious disease doctor with no answers. He is always tired and never feels well. He has relapsed with Mono twice in the last 10 months.
Liked by mapchap, pijax, lioness, nacc ... see all
I have tried 2 UV and Ozone treatments like what you describe. I hope to start up more sessions when I am done with some travel. I will report back as well as to if they help!
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If you Google UltraViolet Ozone Therapy it explains that it was invented in the 1920s so has been around for years. It is very safe if done properly. Whether it can actually treat viruses such as Epstien Barr… I don't know. I am trying it out. I have stopped talking to my doctor about my condition because he is adamant there is nothing that can be done. Many Naturopath nurses know about this treatment very well. Thank goodness I found a good Naturopath in Prescott Az where I live.
Liked by John, Volunteer Mentor
What are Ozone treatments?
If you Google UltraViolet Ozone Therapy you can read about it. It has been around since the 1920's and many Naturopath nurses know how to do the IV work.
Also…John Bishop posted really good information on it 2 days ago including video.
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!
Liked by Terri Martin, Volunteer Mentor, candm
i am in the same boat with my son but now he is 21! We are going back today to get him tested for the 5th time in 3 years. Always tests positive. He does heavy lifting at work and now his spleen is hurting. If someone can help us It sure would mean the world to me. He is too young to stay so run down.
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.
Having EBV is very frustrating. I have been battling this for more than six months. I had heard some time ago about an Ultra Violet treatment that my girlfriend had over 25 years ago. It took me a long time to finally find a doctor here in Florida who offers this treatment. I believe my two doctors were just assuming I would get better over time and weren't recommending additional treatments. Well I got tired of waiting. I started the five week treatments two weeks ago and have also added a hydrogen peroxide IV. I have two treatments a week. I have a bit more energy now and plan to continue the full treatment. I'll keep everyone posted over the next few weeks and let you know if this helps with my chronic fatigue.
**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.
My son is 17yrs. old and a senior in high school. He got the Epstein Barr virus 14 months ago, which caused Mono with another relapse with it a month later. His doctor made him homebound from school for 4 months, due to the severity of this. He has been to see an immunologist and infectious disease doctor, but no help in solving this puzzle. Since diagnosed with Chronic Epstein Barr, he’s been constantly fatigued, just doesn’t feel great half of the time, and is constantly contracting other infections and viruses.
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!
Liked by nacc
My 15 yr old son was diagnosed with mono 5 months ago. He continues to suffer with chronic fatigue, and headaches. 3 years ago he was diagnosed with Henoch Schonlein Purpura which seems to have significantly compromised his immune system. That was three years of chronic fatigue, joint pain and migraine headaches. He was feeling almost himself again when he came down with Mono. I have found medical journal info on a possible like of Epstein Barr and HSP, but they tend to discuss EBV being a trigger to HSP not the other way around like my son has had them. I am at a loss and it is frustrating to continue to see doctors who have no answers. He has found that eating 3-4 coffee beans takes the headaches to a reasonable level. No cure for the chronic fatigue. He takes vitamin D with K, fish oil and has a high protein high fat diet. Vitamin C gives him bowl troubles. He has been able to gain back some of his weight loss, but no increase in his energy levels. I may try again an adrenal supplement which seemed to help slightly with the lack of energy. He still sleeps 14 hours a day and hasn't been to school in 4 months. I feel for all of you going through this personally or with kids. I continue to hear from others who've dealt with this virus that it will get better. It's just hard to wait and meanwhile watch my son's youth slip by without him.
Liked by candm
My daughter also is showing adrenal fatigue, orthostatic hypotension, heart rate variability issues, GI issues, headaches, low temperature. I believe she has chronic EB, but her physicians after diagnosing her 1st with have EP antibodies, then 2nd having mono, then 3rd reversing and saying they thought she had HAD mono, but didn't have it now, and after 6 weeks they basically implied it was a psychological issue. here we are 4 months later, and she's doing at home study, and goes through waves of sleeping lots, and being slightly more active. She has no life anymore at 15. If you haven't read Medical Medium: Secrets Behind Chronic and Mystery Illness and How to Finally Heal, it's got a protocol in it. My 15 yo just won't do it, but i hear good things about it. Also if you're in California and can see Michael Shpak LAc , in Pleasant Hill, he has been the best through this. Although it's not what' I'd call affordable and we're still struggling with it.
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