Does Lyme's have anything to do with EBV

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Doxygirl17
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Date Joined Jul 2017
Total Posts : 21
   Posted 8/10/2017 1:58 PM (GMT -6)   
Tested positive for lymes (1st test - May 2017) - Negative (second test with two 41 & 23 - July 2017). anyway was just tested for EBV and just was told today that it was positive, but NO explanation on what this means. Only that they are referring me to a infectious disease doctor now.

Does Lymes have anything to do with EBV?? IF so how?

What questions should I ask the infectious disease doc?? Any help, advice, input is greatly appreciated!

Thanks!!

Traveler
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Date Joined May 2007
Total Posts : 36310
   Posted 8/10/2017 2:16 PM (GMT -6)   
I sure wouldn't recommend wasting time with an ID doc. They won't recognize the Lyme, and it's questionable if they will recognize the EBV, much less offer any sort of treatment unless your numbers are really high.

EBV, although thought of as a virus that is no big deal, but if left untreated can go on to cause damage to the body.

Often even latent (asymptomatic/dormant) EBV infections will reactivate during Lyme and company infections. This is because of Lyme lowers the immune function, allowing any latent/dormant virus or infection to become active again.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

mcspike
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Date Joined Sep 2016
Total Posts : 165
   Posted 8/10/2017 3:09 PM (GMT -6)   
It is purported that 100% of the American population has antibodies to EBV which is a human herpes virus. As well as the childhood illness we call rosiola which is human herpes virus HHV6.

A healthy immune system can keep those human herpes viruses suppressex; UNTIL along comes MULTIPLE intracellular bacteria and parasiticla infections that cause reactivation of the viruses.

Ive had a HORRIBLE time these past 4 years dealing w/multiple human herpes viruses. The only thing thats kept them suppressed is acyclovir and/or valcyclovir alongwith Alinia

Doxygirl17
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Date Joined Jul 2017
Total Posts : 21
   Posted 8/10/2017 3:33 PM (GMT -6)   
What are the symptoms of EBV. Did not even know about this and have never to my knowledge been diagnosed with mono or (Human herpes viruses (What are these??) so I am confused now more then ever.

What does this mean and what do I look for? Totally in the dark on this one. HELP!

I mean I have heard of herpes and mono. AND I am just now reading it is pretty common. BUT do they test specifically for these two things? or others? Not sure about it. Am I contagious?

SO ID doc wont help on these? weird. But will see what they say.

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2437
   Posted 8/10/2017 4:03 PM (GMT -6)   
I think many here have had epic failures with ID docs recognizing and failing to properly treat those suffering from lyme etc. You certainly can see one. But just keep in mind that if they discount you, there are many other options. It's not always easy to find a lyme literate doctor, but they are around!
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Very sick now despite being treated for years, still very bad
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

Doxygirl17
Regular Member


Date Joined Jul 2017
Total Posts : 21
   Posted 8/10/2017 4:28 PM (GMT -6)   
Thank you! I will at least see what they say. I was definitely "discounted" by my primary. :-(

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 36310
   Posted 8/10/2017 5:20 PM (GMT -6)   
Here is an article that explains the different types of herpes viruses and many of the symptoms : www.medbroadcast.com/channel/infection/herpes/herpes-virus-8-types

Some docs may be able to test for the different types, but most just go by the appearance of symptoms.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

mpost
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Date Joined Feb 2015
Total Posts : 1522
   Posted 8/10/2017 9:05 PM (GMT -6)   
90% world population has been exposed to EBV and has antibodies. EBV never leaves the body after this, it stays dormant amd asymptomatic.

when your immune system gets suppressed later in life, because of lyme, hiv, a very bad case of flu, steroids, surgery, etc.... this virus cam reactivate and give u again the mono symtoms u had as child when first contracted it

it is very usual for lyme patients to have ebv active as long as they have untreated lyme disease. unfortunately reactivated ebv is linked to neurological autoimmune responses and degeneration. i mentioned before that 90% of people were exposed to ebv. in contrast, 100% of the MS patients have EBV which means the virus plays a role in the neuro autoimmune reactions.

my personal view is MS is largely caused by reactivated EBV in case of immune suppression because certain other intrcellular infections like lyme, bart, myco, chlamydia, etc.

10LymeB
Veteran Member


Date Joined Feb 2017
Total Posts : 675
   Posted 8/10/2017 9:37 PM (GMT -6)   
Yes. If you ever had mono, Lyme can definitely reactivate EBV. That's what happened to me. I had mono when I was 17. I didn't know it stays in your body forever. The Lyme reactivated it and I'm currently on Valtrex - long term - to deal with it.
*42 yo - Treatment started Nov. 2016 - Bitten by mosquito in Paris 2013
* SIBO (improved) - Candida - Lyme - Babesia - Bartonella - Hashimoto's - EBV - HHV6 - Tinea Versicolor - IBS
* Mostly herbal treatment, Bryon White

Village Crazy Lady
Regular Member


Date Joined Feb 2017
Total Posts : 374
   Posted 8/10/2017 9:45 PM (GMT -6)   
Hi Doxygirl and welcome.

I was shocked when I heard I had EBV, told the Doc that I'd never had mono! He said oh you had it but you probably just powered thru.

I think this is true for many of us, we get sick but just keep on going.

I hope you feel better.

VCL
~~~Your Life is an Occasion, Rise to It ~~~

Lyme,Bart,Molds,Candida,Cpn,Myco,Ebv,Cmv,MTHFR,Lead.
Symptoms for years and years, Diag 6/2016, LLMD 10/2016
Treating with Abx and company

Doxygirl17
Regular Member


Date Joined Jul 2017
Total Posts : 21
   Posted 8/11/2017 12:10 AM (GMT -6)   
I looked through the herpes info. I don't have anything like they describe. Weird and confusing. Thank you all for the input.

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4715
   Posted 8/11/2017 12:25 AM (GMT -6)   
mpost said...
90% world population has been exposed to EBV and has antibodies. EBV never leaves the body after this, it stays dormant amd asymptomatic.

when your immune system gets suppressed later in life, because of lyme, hiv, a very bad case of flu, steroids, surgery, etc.... this virus cam reactivate and give u again the mono symtoms u had as child when first contracted it

it is very usual for lyme patients to have ebv active as long as they have untreated lyme disease. unfortunately reactivated ebv is linked to neurological autoimmune responses and degeneration. i mentioned before that 90% of people were exposed to ebv. in contrast, 100% of the MS patients have EBV which means the virus plays a role in the neuro autoimmune reactions.

my personal view is MS is largely caused by reactivated EBV in case of immune suppression because certain other intrcellular infections like lyme, bart, myco, chlamydia, etc.
word up

bvt got rid of my canker sores and fatigue .can attest to alinia having antiviral support . lysine and lomatium may be of use in halting replication , even antivirals dont actually kill viruses btw. also it is probably in our vaccines as the use symian blood serum to make them...

logmoss82
Regular Member


Date Joined Mar 2016
Total Posts : 103
   Posted 8/11/2017 2:05 AM (GMT -6)   
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
2) VCA-IgG
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.

EBV Symptoms:

Extreme weakness or fatigue
Fever
Headache
Sore throat
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)


Denver1
Regular Member


Date Joined Apr 2017
Total Posts : 146
   Posted 8/11/2017 7:17 AM (GMT -6)   
Doxygirl -

As you'll see from my signature line, I have a reactivated EBV that only my LLMD discovered. The ID doc SHOULD be able to tell you if you have a reactivated case, but i agree with the others that they will offer you little info and possibly less in the way of treatment.

Keep us posted! And I hope you get both the Lyme and EBV in remission soon!
Denver1
Igenex Bands 23 and 41 IND for both IgG and IgM
Positive for Mycoplasma and EBV
May 2017-July 2017 - Zith and Minocycline
Aug 2017 - starting Cowden herbs on abx break

adey123
Regular Member


Date Joined Jun 2011
Total Posts : 25
   Posted 8/11/2017 7:34 AM (GMT -6)   
Hi there,

I was diagnosed with Lyme in 2009 and after many failed treatments where I literally didn't react (good or bad) to 99% of them, my current LLMD thinks that EBV could have played a factor in my symptoms.

Symptoms are mostly cognitive (brain hypoperfusion as identified in a recent SPECT brain scan) as well as neck, fatigue and pain issues.

My LLMD suspects that EBV could even have caused a false positive on my lyme Elispot and Western blot and a few years ago. I had a positive test done in Germany for EBV recently that was quite high.

If it is EBV there's some hope, as long term trials of high dose anti virals have looked promising for CFS. I'm currently on Valtrex myself, but it's early days.

tcoach1
Regular Member


Date Joined Dec 2014
Total Posts : 258
   Posted 8/11/2017 10:30 AM (GMT -6)   
I still take an antiviral twice a week. In my case if feel that the stress triggers the fatigue portion of this and most of it is ebv.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32609
   Posted 8/11/2017 10:37 AM (GMT -6)   
adey123 said...
Hi there,

I was diagnosed with Lyme in 2009 and after many failed treatments where I literally didn't react (good or bad) to 99% of them, my current LLMD thinks that EBV could have played a factor in my symptoms.

Symptoms are mostly cognitive (brain hypoperfusion as identified in a recent SPECT brain scan) as well as neck, fatigue and pain issues.

My LLMD suspects that EBV could even have caused a false positive on my lyme Elispot and Western blot and a few years ago. I had a positive test done in Germany for EBV recently that was quite high.

If it is EBV there's some hope, as long term trials of high dose anti virals have looked promising for CFS. I'm currently on Valtrex myself, but it's early days.


EBV can be the cause of band 31 being positive (rarely according to Dr. H.) - but if you had others - like Band 23, 34, 39, 83-93 - then it's lyme.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32609
   Posted 8/11/2017 10:39 AM (GMT -6)   
logmosse or anyone else:


Extreme weakness or fatigue
Fever
Headache
Sore throat
Swollen lymph glands in the neck and/or armpits

If I don't have any of those symptoms - do I need to be concerned with a reactivation of EBV?

I did have on swollen lymph node - the Clavicle one - but it resolved with bartonella treatment. But none of the other symptoms.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 36310
   Posted 8/11/2017 10:47 AM (GMT -6)   
Not likely, Girlie. But the testing is pretty decent for EBV from what I understand, so you may want to ask to be tested, just to be sure.

The thing is, EBV symptoms are hard to differentiate from Lyme and company often times. I can finally tell the difference to a certain point, but I've lived with both Lyme and extremely high levels of EBV for decades. One would think that eventually I would be able to tell something!! LOL! Mostly I just use the elimination process to figure out what's causing my symptoms.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32609
   Posted 8/11/2017 11:11 AM (GMT -6)   
Traveler said...
Not likely, Girlie. But the testing is pretty decent for EBV from what I understand, so you may want to ask to be tested, just to be sure.

The thing is, EBV symptoms are hard to differentiate from Lyme and company often times. I can finally tell the difference to a certain point, but I've lived with both Lyme and extremely high levels of EBV for decades. One would think that eventually I would be able to tell something!! LOL! Mostly I just use the elimination process to figure out what's causing my symptoms.


Would a 'regular' Dr know what tests to do? Or is this something I should discuss with my LLND?

No fatigue though - or other symptoms.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 36310
   Posted 8/11/2017 11:45 AM (GMT -6)   
As Logmoss posted:
"There are usually four categories in the EBV test:

1) Viral capsid antigen (VCA)-IgM
2) VCA-IgG
3) early antigen (EA-D)
4) Epstein Barr nuclear antigen (EBNA) "

If the doc doesn't know what you are talking about, you can see if they will still run those tests - then you can find the interpretation online, as we have to do with the Lyme tests too. Ugh.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

brantron
New Member


Date Joined Aug 2017
Total Posts : 5
   Posted 8/11/2017 12:20 PM (GMT -6)   
I did the Quest antibody panels for Epstein-Barr, Cytomegalovirus and HHV6 a few months ago. Cash price was $100 total and EBV was only $20, if I remember right. Most of those I've inquired about were pretty inexpensive, the exception being mycoplasma pneumonia was $200 for who knows what reason.

Interestingly, I have never had EBV or CMV, just HHV6, but it was inactive. The doctor said, "I guess you were a healthy kid!" ...except I was not lol. What a roller coaster.

Doxygirl17
Regular Member


Date Joined Jul 2017
Total Posts : 21
   Posted 8/11/2017 10:44 PM (GMT -6)   
logmoss82
and others!

Super nice responses! Thanks so much for all the input!! Greatly appreciated!

Have not heard back from a referral yet for the ID doc. waiting for a call.

EBV results
EBV Early Antigen Ab, IgG (normal 0.0-8.9) results 28.9 U/mL
EBV Ab VCA, IgG (Normal 0.0-17.9) results 366.0 U/mL
EBV Nuclear Antigen Ab, IgG (Normal 0.0-17.9) results 346.0 U/mL

to tired to type out the interpretation right now.

Seems super high to me! Yikes.

Will keep you all posted to what the ID doc says or doesn't.

I don't recall ever having "mono" so who knows where this came from.
Anyway thanks ALL for the input! makes some sense of this confusing journey.

Doxygirl17
Regular Member


Date Joined Jul 2017
Total Posts : 21
   Posted 8/11/2017 10:45 PM (GMT -6)   
Oh and when I posted a screen name totally did not think about the Doxy as in meds! LOL I raise (well I used to) dachshunds. That's where that came from.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32609
   Posted 8/12/2017 12:22 AM (GMT -6)   
Doxygirl17 said...
Oh and when I posted a screen name totally did not think about the Doxy as in meds! LOL I raise (well I used to) dachshunds. That's where that came from.


That's funny! I totally thought it was doxy for doxycycline...lol.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
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