Epstein-Barr And Immune System

[NMPotsie]

I've had issues with chronic infections and have seen a host of specialists trying to figure out what is going on. Recently I saw a doctor who ran a host of immune system tests and everything looked great except the ebv panel, which showed chronic Epstein Barr. All of the numbers were high, but the one he pointed out was the recent indicator, which was over 1500.

This is out of my area. Can someone help me understand if this could be causing some of my immune system issues, and how?

[HopeSprings]

I've recently been down this road. Here was my experience... I handed a list of symptoms to my primary care Dr. and asked him to help me figure out what might be underlying my dyasautonomia. He tested for a ton of stuff, including EBV and it was the only thing that came back positive. Like you, showing chronic active infection. He thought this pointed me in the direction of CFS. Went to see an infectious disease/CFS specialist who agreed and diagnosed CFS. She then tested for a bunch more stuff and other things came back high including M. Pneumoniae and HHV6. She also checked natural killer cells, which came back low. So possibly something is wrong with the immune system which is allowing these viruses/bacteria to run wild. She told me the fact that I have POTS means I have a more severe form of CFS. OI can be a symptom in CFS. She gave me some treatment options - antivirals, low dose naltrexone, IV saline. There are a few Dr's treating CFS with antivirals and claim success. I'm not sure what I think about the whole thing - I've read that 20% of healthy people can show antibodies to EBV. I'm still trying to decide what to do next. What was his interpretation of the results? Did he suggest anything?

[kluesyk]

I have chronic mycoplasm p, POTS, low CD counts, and high neutrophils. I also have had shingles 4x in the past 2 years....another indication of my low immune system. My counts are getting really low so I am seeing an immunologist next week.

I do think it is all related in some way....just wish I could get to the core cause.

[NMPotsie]

Thanks for responding. Naomi he is a doctor who treats people with LDN, which is partly why I sought his opinion, but he said it hasn't shown any success with ebv. He also said there are many studies that show promising results with retrovirals in ebv but that when applied to people (rather than animals or test tubes) they don't show any effect. So basically he doesn't see any useful options in those areas.

He suggested strengthening my immune system by replacing some of my low vitamin counts and possibly adding 600 mg ALA orally (or intravenously, which may work better) because it somehow helps vitamin c do its job and also scavenges free radicals. I am currently researching this angle. He also suggested an immunologist. I have a followup at mayo with dr. Goodman in sept., so he told me to contact them for that.

Klues I'm sorry you are having those issues. It's so frustrating!

[HopeSprings]

Sounds like you're on top of it. Please let me know if you learn anything new or if you find something that helps.

[NMPotsie]

Yeah absolutely I will let you know. The problem is I could see another doc tomorrow who says the opposite. I have no evidence that most of them know what they are talking about. They need to do a study on that!

[derekliz]

do some research on Red Marine Algae and Olive Leaf Extract. I have been taking both for quite some time . My EBV dna levels were elevated so I found these supplements at my local nutrition center. About 6 months later, the EBV DNA test was resdone and my levels were below range. I have the dosage listed in my signature.

Good luck~

Liz

[NMPotsie]

Thanks so much, derekliz. I will give that a try!

[derekliz]

You are welcome.....if you try it, I hope it works for you too!

liz