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Really Scared about my EBV Results

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Posted 6/17/2018 4:19 PM (GMT -5)
I was going through some of my bloodwork and noticed that 2 years ago...my EBV results show that I have chronic active epstein barr virus? And when I look that up online the prognosis was 5 years. The EBV-IGM shows positive for Early Phase and Acute Primary infections. And at the bottom everything is positive showing it's a "reactivated infection". So I would have Chronic Active EBV. Has this ever happened to anyone else?
Posted 6/17/2018 4:58 PM (GMT -5)
Hi lvg,

Do you mind posting where you found that information on the prognosis? Honestly, I wouldn't freak out. Call me jaded, maybe it is from the lyme - but there is so much we don't know, that drs don't know.

https://www.healingwell.com/community/default.aspx?f=30&m=3895641

Aside from going through your bloodwork, how are you feeling?
Posted 6/17/2018 5:24 PM (GMT -5)
Hello opugirl,

I just say the results from the blood test but I don't see the doctor until Tuesday so I have been a little worried. Today hasn't been a good day...I didn't sleep and pain all over.

I have been treating for a 1.5 years with Dr. J in DC. The protocols switch every three months but I have slowly been declining so I am looking forward to the Tuesday appointment.

How are you doing? What has your path been?
Posted 6/17/2018 6:00 PM (GMT -5)
Sorry to hear that Lvg,

How have you liked the facility in DC?? I know some that have had good success there and I know others that have had to switch to someone else.

There is a really good herbalist that worked with Buhner in Catonsville. There are always other options and drs. too. With dr. J have you mainly been doing Western? Sorry to hear about the job loss - I was very fortunate that I had a lot of vacation time when I got sick and very understanding bosses.

How is your sleep usually? Are you taking anything for pain? I used turmeric and it was great for me.

My path was pretty much hit the floor-did a crapton of research online. Found a western llmd, an herbalist that specialized in lyme and we had a member on here before 'Heathersdad' that talked about bioenergetic assessment. <-Sounded like bull to me but I was desperate so I found someone that did it and that naturopath has been AMAZING. She is the only dr I still see. I've sent a lot of folks to her and as far as I know everyone has had significant improvement with her. I didn't have kids then so I was spending about $1300/out of pocket a month until I exhausted my savings. Still worth it.

~beth
Posted 6/17/2018 6:22 PM (GMT -5)
Hello opugirl,

I had a really difficult situation with Lyme. One of my doctors found babesia in my bloodwork but was only treating me for babesia at the time so I begged for him to let me do the Igenex Lyme test. And the IGG came back positive...but my doctor wouldn't treat me for Lyme. During that time I was still on antimalarials and got into Buhner's protocol and I was pretty rigid with Buhner's protocol for like a year. But I just kept declining...so that's when I was like I want to see this person in DC who seems to know a lot about Lyme.

I mean Jemsek's office is small, it's extremely unorganized, and you can't get a hold of someone when you call so you have to leave messages even if you want to change your appointment. There are many times I call them and just have to turn my phone on and have it on me at all times to hear back from them lol. But they have a PA named Kim Fogarty and she's just unbelievable. I have never met any doctor in my lifetime that is so thorough and so knowledgeable on every single thing. She knows every therapy there is to know about Lyme and herbs and just all these things so I would never switch from her.

With the EBV test I am really hoping that they will say the EBV was active and reactivated due to the Lyme and it suppressing my immune system.

The thing is, I got this thorough EBV test done in 2016 and the doctor misread the results and gave me an improper diagnosis at the time.

That sounds wonderful! Is he/she close to DC? My plan is to start doing the alternative stuff now. Like I really want to try hyperbaric oxygen therapy. I would love to try bioenergetic medicine (not sure if I could find someone around here), and I really need to get a rife machine. I will also see someone who does Chinese medicine or homeopathy or things like that but I haven't looked further into it. All of the alternative doctors are sooooo expensive and then you have to buy everything they recommend so I have been putting it off.

Would you say you are like 90-100% back to health? I think I am still at like 65%...but I was coming from like 40%

~Lisa
Posted 6/17/2018 6:44 PM (GMT -5)
Hi Lisa,

Well that sounds somewhat encouraging that you are at 65%. Yes there are a lot of good supplemental/alternative treatments. Are you around the DC area? I can definitely do some research if you would like for treatments that may be close to you.

Yup! I'm not sure I know what 100% is but I would guess I'm there. I'm really bad at taking care of myself. I was very good with diet for a few years but between my son, working full time etc. I just haven't. I have yeast issues, always have. And things always come up here and there but I never attribute it to lyme. And after daycare...I feel like I have a pretty decent immunity built up!

Fingers crossed that you get some good advice for the EBV at this appointment.
Posted 6/17/2018 8:01 PM (GMT -5)

Lvg123 said...
I was going through some of my bloodwork and noticed that 2 years ago...my EBV results show that I have chronic active epstein barr virus? And when I look that up online the prognosis was 5 years.

What do you mean prognosis was 5 years?
Posted 6/18/2018 1:16 AM (GMT -5)
chronic EBV is as well understood as the causes of MS are, which means almost no understanding at all. If u found a site quoting some definitive numbers about prognosis, ignore it, it's "fake news" smile

Nobody knows how to treat and manage EBV in reactivated/chronic form. The antivirals that work are few and have little effect on EBV. Generally the treatment is finding what is wrong with your immune system that allows EBV to reactivate in this way. It is a sign there is something else wrong with u. Forget about EBV. Everbody has it, 70% of world population has EBV yet 99.9% of them are asymptomatic. Have u heard of an "EBV pandemic" ?
Posted 6/18/2018 10:52 AM (GMT -5)
Agree with mpost. Don't worry at all about EBV. We all have it.

Fighting Lyme, Babs and Bart should be your only concern.
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