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
Hi I was diagnosed in Jan of 2018 with this virus that is awful and basically gives you no life and you can never find help. I keep getting sicker and sicker lymphoma it causes they thought I had this in the emergency room a doctor did a partial gland biospy it was benign big deal there was a ton of nodes in my neck Right now 8 months since doc my neck and nodes it’s like pressure it hurts right now I have raised bumps all down into my esophagus, I have night sweats, sleep all the time, I have no voice and feel very viral 8 months since diagnosis. I’m dying and I know this.p, I feel it you can die from this no cure virus. Unfortunately the infectious dr said I insulted her Indian medical degree and kicked me out. Infectious, rare disease drs do nothing. The ER when your sick think your nuts my primary says nothing I can do oh it’s normal my mouth has white raised bumps and I can not swallow or have no voice?????oh it’s normal to barely be able to wake up and have a rash for 6 months neck nodes hurt chills throw up and I could not walk one day and hm I have sprained my ankle and achellis heel and I never fell. Stop with the standard comp blood panels and CBC that means nothing. I am going to Sloan Kettering where doctors do not swear at you, actually are intelligent and can help me know if I have cancer from this virus which u can get or if it’s just chronic EBV yes tested positive and got EBV DNA test. Can someone in this world make me feel better, I refuse to live like this EVER I am beyond shocked how some drs practice, they make up things and treat you like dirt so that last post stay away from those doctors
Liked by Merry, Volunteer Mentor
Hi @kittykiernan and @34micasita welcome to Connect. @kittykiernan you may have noticed I moved your post to this existing discussion on Chronic EBV so that you can connect with others who have similar experience. Simply click VIEW & REPLY in your email notification to get to your post.
What both of you are going through must be so frustrating as you continue to have new symptoms arise.
I'd like to tag fellow Connect members @airsleeper @mrmie @momnxtdr @dcbrenek and @lioness as they have experience with Chronic EBV and they may be able to offer you support.
Back to you @34micasita do you mind sharing more about your stomach issues?
@kittykiernan how long untill you go to your new doctor?
Liked by John, Volunteer Mentor
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Ok great..It is a awful illness and I have no idea when I’ll be able to get in…
Hi @kittykiernan What you were going through is difficult. My story is a little different but similar in that I could no longer take care of myself and had no help from conventional doctors. Here is a website that may be helpful. Kasia Kines PhD has a passion for helping those with EBV. She provides lots of information in her book and website. ebvhelp.com
Thank you. I’m am starting to not be able to take care of myself. There are doctors that are saying insane things things about me making up psychiatric issues I have never had, putting things on my charts that I have never had. Are you better? I will look now , it’s nice she has a book but I need help. Does she take patients?
Yes I believe she works with people long distance. I have had doctors chart things that were not helpful in my records as well — such as " have you ever considered that maybe there is nothing wrong?" I can only laugh at that!! Anyway, yes I am doing much better I am hoping to get back to work next year. I have been working with Dr. Roger Murphree since January. He is specialized in chronic fatigue syndrome and that is basically what I have.
I am a 48 year old woman who had Epstein-Barr Virus when I was 19 yrs old. I dropped out of college so many times that eventually I gave up. From this virus I have developed Mitral Valve Prolapse. I have a friend who's son contracted Leukemia as a direct correlation from this auto-immune disease. I have suffered bouts of chronic fatigue, depression, anemia, low-blood cell counts, and now stomach issues and possible Diabetes. This disease has haunted me like an evil specter and I am so tired of seeing arrogant doctors who know diddly-squat about this disorder and think all woman are just hysterical drama queens. I am so fed up I don't lknow what to do. I called my insurance today and was told they have ENT-Immunologists but no Immunologists participating in my plan. WTF do I do ???????
Hi @34micasita Your story sounds similar to mine. What you are going through is difficult — understatement!
Here are some links that may be helpful. http://www.ebvhelp.com
You can also check out my blog. http://www.BackToLifeWellness.blogspot.com
Use the search box for my posts on EBV, and Tips For Dealing With a Chronic Illness. Wishing you well soon!!! …..Marianne
Thank you for the resources. I just can’t function no one will help me. I feel like I’m going to die. I’ll look at everything I’ll do anything to get better I’m scared I might have cancer from it I have the brca cancer gene. This is the worst thing that could happen to anyone and no one gets it…
I contracted EBV in 2015 from someone in the gym I was going to. I went from being in the gym every day to barely being able to move. This all happened one month before I turned 40 so I caught it late and it took months of doctor visits to get that much. As things progressed I was diagnosed with CFS. Fifteen months ago I ended up in the ICU and since then I literally feel like I've been poisoned, that's how bad I feel on the inside. I feel like my mind is gone, my pain is debilitating, dry eyes, stomach and digestive problems, neuropathy in my feet, mouth issues, can't deal with temperature changes, cold hands and feet but sweating,oversensitive nerves, sinus infections that antibiotics couldn't touch so I had to have sinus surgery and the list goes on. Now after numerous ER visits and about 15-20 specialists I've been told it may be Chronic EBV but now my bloodwork is showing an autoimmune disorder and this was only after I told them to test me for it. It looks like a reactivation that does not go away. The problem with this illness is Doctors DO NOT know about it. I'm scheduled for an endoscopy in two weeks then onto the infectious disease doctor. I'm to the point that I am so miserable that I enjoy nothing. I've tried to read as many of the posts as possible and it seems like we all have the same issues of varying degrees. Has anyone had luck with Anti-Viral meds or anything else?
If you haven’t already, become a member of Facebook’s EBV group and read, read, read everyone’s posts. I learned a great deal and followed nutrition, treatment and activity advise. There was so much to learn. I’m doing better after two years of following suggestions. I didn’t have a single doctor who knew enough about this illness. I had to request my doctor write me scripts for what I heard worked for others.
I have no money to see a doctor
Oh so we feel alike. Interested what immune did you find? For the drs to test? Unreal we have to tell them
Unknown at this point. I've searched the internet so much because all of the doctors I've seen have no idea. My A/G test in my bloodwork came back high which I was told is autoimmune related. From what I've read that could be one of many different syndromes as my symptoms fit quite a few. More bloodwork needed.
I joined the two I found, just waiting to be added. Thanks
Hi @cummings3! I too know how frustrating it is. I had an infectious disease doctor laugh in my face and tell me to stop going to doctors because she believes there is no such thing as chronic EBV. My PCP recently gave me this protocol (below are her direct notes), which she says several patients have had great success with. I haven’t started it yet due to other GI issues, but I’m planning to try soon. It’s all natural supplements, so I’m comfortable sharing, but you may want to check with your doctor and make sure no conflicts with anything else your son might be taking.
Chronic Epstein Barr Virus Infection:
– This is a reactivation of an old EBV viral infection and is not contagious.
– Discussed starting on sambucus or sambucol 2 tsp 3x day for a couple of months or one of the lozenges 3x/day, then can go down to once daily for one more month which has been shown to help shorten viral duration and decrease severity of symptoms in certain viral infections including EBV.
– Vitamin C is a cofactor in the viral immune system – can take as much as 900-1000 mg once-twice daily.
– Quercetin has studies showing its ability to help the body fight the early antigen of the epstein barr virus. Dose = 1000-1200 mg daily
– N-Acetyl Cystine (NAC) is an antioxidant that can help with nerve function and memory. Dose : 600 mg once daily
NOTE: There is a combination product called Di-Hist or Nu-Hist that has Quercetin, NAC and Vitamin C in it which is convenient but slightly more expensive than putting together own ingredients. Can be gotten from Apothecary shop or online.
– To help with fatigue, discussed using 5 gm (5,000 mg) ribose 3 a day for 3 weeks, then 5 gm twice a day for 6 weeks to see the full clinical effect. We have patients get a 280 gm container of ribose (Corvalen from Douglas labs) as a therapeutic trial. http://www.endfatigue.com/tools-support/D-ribose.html – can order on line from this website (and the endfatigue.com has a good write up of some of the research) or can go to amazon and put in Corvalen or D-ribose by Superior Fuel.
– Discussed may take up to 3 months (or longer) for full effect. Once feeling better, slowly stop the medications (stop the quercetin first, then NAC, then vitamin C, then the sambucol- as an example). Would not stop the supplements till has been feeling well for 4 weeks.
@kanaazpereira, @suesiegel, @arriba, @aman_23_23, @copiela, @jatl, @cheryldotson
I need help I reactivated my neck is so swollen, I can not stay awake for 2 hours of the day, I feel viral every bone hurts I’m at a loss .my infectious dr kicked me out saying insulted her medical intelligence by showing her the thread I follow she said only uneducated people follow these threads. I know my body I know I have non Hodgkin no one helps me. ER docs I do not see anythin,well getting your dirty I phone out of my face to look down my mouth white patches there for a month, finally broke down I felt like there was really something wrong. I felt off. They say strep, then another one said tonsillitis they are all wrong. I lay in bed hoping I bleed from my ears 9 months with no one to see what immune disorder I have. A rash was on my face 7 months, already had one lymph biopsy Benign. So? Means nothing. I have a go fund me page no one donates. It like 750 dollars to walk into a Intergretive place. They will do everything for me. What is this a rich person disease? My primary checked out
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