Treatment for chronic Epstein-Barr virus (EBV)

@smcivor94 I am so sorry to hear that things did not go well. However, it does not surprise me. From what I have noticed, most people in our situations have better luck with a naturopathic or functional medical doctor. Hopefully he ordered an entire EBV panel that includes the IgM, IgG, and early antigen antibodies. But even with all of those being out the roof and the IgM positive (that detects current infection), I got the same brush off from ID. He did draw an EBV PCR (which detects DNA of the virus in the blood) and that was negative. What I learned from other MDs and PhDs who actually treat patients with recurrent EBV is that the DNA may only show up in the blood for a few weeks in the beginning. I also got the impression that the traditional doctors I had seen thought it was "all in my head." Don't let that stop you from getting on a path to getting well. You sound like a very driven person, not lazy! Didn't you say you were in law school? Anyway, has your doc ordered anything to check out your pain, like an ultrasound? With the way your illness came on, it sounds like the beginning of CFS (chronic fatigue syndrome). Of course, I am not a doctor and cannot diagnose. I hate that diagnosis though because most doctors just stop there and don't try to get to the root cause. Often times it starts with an infection. You can check out http://www.yourfibrodoctor.com for more info on that. If ID is finished with you after getting the bloodwork back, it may be worth it to look into an alternative healthcare practitioner. However, it is important to still be in touch with your primary care doctor.

I agree with the above! I went to an Infectious Disease specialist before I heard about Naturopath MDs and they said nothing coukd be done for chronic EB virus. I am going to a fabulous Naturopathic MD now. I don't even go to regular doctors any more. Just her. She can prescribe any prescription meds and knows a ton about EBV, CFS and overall the most knowledgeable doc I have ever been to. Keep searching.

Same here @lisajensen I started going to an intregrative medical office and have improved leaps and bounds. The more I learn the more I realize EBV, Thyroid, gluten and all of the above care related due to EBV. I found someone good with thyroid issues and she knows the whole deal.

My father experienced the same some years ago. He always stated he was tired. My mum found it abnormal and took him to doctors. As a result, they found he suffers from "apnea" which prevents him from breathing well when sleeping due to night breth-gaps where he suddenly stops breathing for short periods of time. Therefore, oxygen levels and rest are abnormal.
He now sleeps with a mask which pushes the air of the room right to his nose and mouth so he takes it all and breath. He deinflated and his face completely changed.
Visit a neumologist.

@mrmie I think the most frustrating thing is not having an answer for the way I’m feeling. I know my physical symptoms are real and not a figure of my imagination. My gyne was happy to do another ultrasound but believes it won’t be useful as she thinks the pain in coming from my bowels as I’m extremely constipated so that kinda makes sense. Told me to take some natural laxatives and sent me on my way. Forgot to mention the ID doc is also testing my CK levels as I’m having muscle pain intermittently. He reckons it may take upto a year for me to start feeling somewhat ‘better.’ I’ll definitey look into the naturopath side of things, although I’m not sure how accessible they are in the UK. My gran is a big believer in natural medicinal remedies and swears by linseed, comfrey tea amongst many other things! Thank you everyone for your input it’s greatly appreciated.

Btw, has anyone experienced a very sore tongue with EBV? The doc said it’s because I’m run down, but I’m sure it’s linked with the illness.

@smcivor94 When I get a sore tongue it is way in the back on the side and feels like a sore lymph node. A sore tongue could also be a vitamin deficiency --I'm thinking one of the B vitamins.

Three years ago I was diagnosed with chronic to acute EBV virus. A week later I was diagnosed with CLL as well. Both around the Christmas holidays which has changed my outlook on December.

What has worked Best for me is getting an LDI injection every 6 to 7 weeks - 5 weeks if I really need it sooner in which case my doc does not charge me for the injection. LDI- Low Dose ImmunoTherapy. I can't tell you whats in it. Only that it works. Perhaps some else here can say what the mix is? IF I go beyond 7 weeks I feel like crap and can hardly get out of bed. This was driven how this past August when I was traveling out of state. I went to long and it took a wheelchair to get me into the airport and onto the plane. I then slept for 5 hours and got a wheelchair to take from the plan to the car. I now never miss a dose.

I think of it as an allergy shot - but have been told that is not quite the right way to think about. For about 12 hours after the injection I need to rest, then it kicks in and I have energy enough that it allows me to work a 40 hr week - but not a straight job. Luckily I consult to NGO's and nonprofits on grants and strategic planning - so I make the work fit around my diseases.

My suggestion is to speak to a good naturopath in your area and add another member to your son's care team.

Wishing you all the best.

@oceantroll This is the first I have heard of low dose immu otherapy as a possible way to reduce the symptoms of chronic Epstein Barr Virus. Interesting, thank you! I also got the virus for the first time around Christmas 10 years ago. I noticed that the activity on this web site increased dramatically after Christmas this past year. Also interesting.

How old is your son? My son is 7 and has been homebound since early December. We saw an ID doctor who thinks it’s mental and ran more labs. Bloodwork says EBV but his only symptoms is fatigue.