Yes its an absolute shame that not only do we have to worry about
suffering with lyme and co, we also have to now become our own doctors, our own researchers and our own microbiologists. I just wonder why it's common knowledge among the laypeople in the Lyme community that this disease can reactivate EBV, but ID docs are clueless about
this, and there isnt a hint of this information in the medical scientific literature, but all you have to do is go to a few Lyme chat sites and you can recognize the correlation and conclude the causation as well, as you can find lots of people who test positive for Lyme who also test positive for active EBV.
I refuse to believe that so many doctors, scientists and microbiologists could be so ignorant about
this, but this, like almost everything that has to do with Lyme, is a willful ignorance on their part. Its things like this, that go well beyond simple incompetence and an honest failure to fully understand Lyme, into the territory of outright ignoring the reality of Lyme, which lets you know there is a deliberate suppression of facts and purposeful deception going on in the medical world when it comes to these diseases, and that makes me angry to say the least.
I too am dealing with this issue. Like Lyme, EBV can be difficult to test for, because you can only test for antibodies instead of testing for the virus itself. There are usually four categories in the EBV test:
1) Viral capsid antigen (VCA)-IgM
3) early antigen (EA-D)
4) Epstein Barr nuclear antigen (EBNA)
Test results most likely indicate the following:
VCA-IgM VCA-IgG EA-D, IgG EBNA,---------------------------- Interpretation
Negative Negative Negative Negative--------------------No infection, susceptible to EBV
Positive Positive Negative Negative--------------------Early, primary infection
Neg orPos Positive Positive Negative--------------------Active infection
Negative Positive Negative Positive---------------------Past infection
Negative Positive Positive Positive---------------------May indicate reactivation of virus
This can be very confusing. I had very highly elevated IGG and EBNA, which according to some people can also mean a virus reactivation. My titers were so high, more than 10x the upper normal limits, that it tells me SOMETHING is going on here.
Unfortunately EBV symptoms are notoriously nonspecific and happen to overlap almost completely with Lyme symptoms. The main symptom is fatigue which is also the main symptom of Lyme.
Extreme weakness or fatigue
Swollen lymph glands in the neck and/or armpits
Again these are also classic Lyme symptoms, so it can be impossible to know what disease is causing what symptom if you test positive for both.
Also like Lyme, most doctors dont want to treat EBV at all, and don't even want to acknowledge it. It was a big deal in the 80's and 90's but became associated with questionable diagnosis and 'quack' treatments (sound familiar?) So most docs will write you off for even mentioning it. The consensus seems to be that since everyone has EBV, theres no need to look at it as a serious disease. Furthermore even if they do find it in tests, there is little that can be done. They may say "you got the kissing disease. Rest for two weeks and drink fluids." They just treat it like the flu basically. Heres the official line in regards to treatment.
"Care is largely supportive and typically includes plenty of rest and fluids as well as treatment of the symptoms. Avoiding any contact sports or heavy lifting for several weeks to months may be recommended. There are no anti-viral medications available to speed healing; however, anti-virals and steroids can be used to treat symptoms in severe cases. At present, there is no vaccine for EBV, but clinical trials are underway."
"Reactivation of the virus is rarely a health concern unless the person is significantly and persistently immunocompromised, as may happen in those who have HIV/AIDS (and of course LYME) or organ transplant recipients. Primary infections in these people can be more severe, and some may experience chronic EBV-related symptoms."
Antivirals arent considered particularly effective and there hasnt been much success associated with using them for EBV. Even many LLMD's will tell you that since everyone has EBV, there isnt much use in testing for it. Some will acknowledge that LYme reactivates EBV, but they still mainly focus on treating Lyme in the hopes that if they eliminate the trigger or the biggest factor in your disease process (Lyme, coinfections) that your body will be able to naturally respond and put EBV and other 'opportunistic' infections back into a dormant state. This is the strategy I am using with my LLMD, and in all honesty I think this is the best you can hope for, if you are like me and EBV was never a problem before Lyme, but now you test positive.
These issues can definitely muddy the waters when it comes to treating Lyme, and can send you into treatment 'rabbit holes' where you are chasing your tail trying to treat everything individually. I have yet to hear from anyone who has LYme and EBV claim that they had any success using antivirals. I have however, heard of several people who continued to treat Lyme or a coinfection, and then saw their EBV levels go back to normal. You dont want to get sidetracked. LYme likely triggered this, so treating Lyme should improve it.
It will be interesting to see what the ID doc says, but I wouldnt expect any breakthroughs. You could ask if your test results indicate ative infection, prior infection, or reactivation. You could ask if he is aware of any connection between EBV and Lyme and I'm sure he will say no. They will likely treat it like a first time mono infection and tell you to rest and you will feel better in two weeks. If you have Lyme (like one of your tests indicates) you will not feel better in 2 weeks. I would bring up Lyme and mention the Positive test and explain your symptoms. Try to pursue the Lyme angel if you can, but most likely he will dismiss the EBV and the Lyme. Hate to be negative but thats what 95% of ID doctors do when the word Lyme comes up. It's too hard and they are afraid of losing their license if they treat Lyme. Unfortunately thats what happens a lot of the time.
I would recommend contacting an LLMD if you can afford it and focus on treating LYme as soon as you can. If you can't afford it or would like to pursue another route you could try herbs, as there are many people on this forum who swear by them and can guide you in this direction. In my opinion, it would probably be best to try antibiotics first, especially if the Lyme infection is relatively new, and judging by your screen name, you have some familiarity with antibiotics. Get on a solid Lyme treatment and stick with it. I would continue to focus on treating Lyme and hope that once you can get that under control, your EBV will go back to being dormant.
Good luck. let us know how the ID doc appointment goes, keep treating, and do keep us posted.
Post Edited (logmoss82) : 8/11/2017 2:20:37 AM (GMT-6)