How many of you have Lyme Disease with Epstein Barr Virus??
Just last Dec. my doc finally diagnosed me with Lyme upon my "false negative" lab tests. He had me see an infectious disease specialist for further evaluation and the ID doc told my PCP that I don't have Lyme Disease but that I have Chronic Mono.
I don't believe this ID doc' which I think is a quackoo duck, but I do believe in the possibility of having EBV that was probably exacerbated by having Lyme Disease. My doc first diagnosed me with EBV when I crashed about 3 years ago, before he eventually told me I have Lyme Disease....
So I'm curious to hear more on what others have to say about this and what your docs are doing for this type of situation. Is EBV considered a co-infection?? Or is this to be considered as two exsisting conditions?
Posted by map1131 (Member # 2022) on :
My internist called it lyme disease the first visit within 10 days of coming down with flu-like sx and many other sx. He gave me the standard doxy 100 2x. Then a few days later added amox, then later added zithromax, ampicillin.
He added the extra abx because he realized the doc book calling for doxy for 21 days wasn't helping.
Two months into this he did some more tests because I was getting worse. EBV came back positive and he thought aha that's why you're sick. Came off abx.
Two months with no abx and then I had over 40+ sx of lyme. When I showed him the list of sx and told him there was no doubt in my mind it is lyme, he agreed and told me he was hoping it wasn't lyme all along.
Quite possibily the EBV triggered the lyme that had been in my body for a year. For a year I had vague things happening, one day knees hurt, one day wrists hurt. Just little things that I could ignore.
With all of this you try to figure out what came first the chicken or the egg? ID's generally don't talk lyme. I hope your GP will treat you based on your sx.
Lyme seems to open the door for many other bacteria, viruses, parsites etc to take over your weaken immune system. For EBV all you can do is rest and ride out the fatigue etc that comes with it.
It is very important that you give your body the needed vitamins and mineral that will be depleted with a chronic illness.
But most importantly is what you do to detox your major organs like your colon, spleen, liver, gall bladder, kidneys, etc so that they don't become overwhelmed.
Pam
Posted by WildCondor (Member # 434) on :
I was told I had Chronic Mono for years, then CFS, all that stuff, and had positive Epstein barr tests too. Basically, the Lyme disease bacteria take such a huge tollon our bodies that normally inactive viruses can become active for awhile, such as Epstein barr. When you treat Lyme, the viruses go back to dormant, and your immune system kicks into gear. The EBV needs something to trigger it to become active, Lyme! Once I got treated for Lyme, my EBV went back to normal. Echinacea capsules pulsed correctly canhelp this, Email me for info. Hope that helps! So many of us have been given the same load of BS from an ID doc, they dotn know what they are doing! Good for you for being smart and educating yourself!! Posted by Kerryblue (Member # 4077) on :
90% maybe more test positive for EBV.
Condo, your statement in a way proves EBV is linked. Just whether it is active or not. If your treatment made the EBV inactive, may just show this is another link.
IMHO, that is why Bowen tests all show Lyme. Think anyone bit by anything. I do not focus just on ticks since the Govts. numerous time let out the Mycoplasma in mosquito`s.
I think like staff,strep,cancer we all Carry, needs the window of opportunity to slip in. Kerry
EBV/linked heavily with chronic fatigue when EBV is active. Maybe why Cfids only go into remission without treatment. Where fmers hardly ever go into true remission.
The dots need conection. Look back to mycoplasma.?????Hard to track unfortunately,like Lyme when comes to testing...Most are positive though,hmmmmmm????
Still feel here we have link need to connect the dots.
Look how many yrs. & money on cancer,common flu, still not very far. They have lot more money given to these studies.
Posted by lpkayak (Member # 5230) on :
years ago my son had lyme (pos elisa-even the infec dis doc said pos), epstein bar and mono. he was a pretty sick kid. very tuff - active kid and did insist on still sitting on the bench when he was sick-but no way could he play soccer. he pretty much lived on the couch for awhile. but he did respond to treatment and is well now. he has always been very physical and works very hard a t a number of sports. he was bitten and got symptoms at least 6-7 times-got 6 weeks of doxy and got better each time. he responded way different than me, my older son, grandson or daughter---but i think the main thing with him is IF he can move-he goes fast and hard and his body temp is probably pretty high most of the time...
Posted by Cate (Member # 8787) on :
i have EBV titers showing active infection, and clinical evidence of lyme (but an indeterminate western blot). i'm just beginning treatment, but my doc seems to think the lyme is the underlying problem that reactivates a virus.
but that doesn't mean you ignore the viral problem and only treat the lyme. it seems that reducing the viral load with imunovir, or acyclovir, or anti-viral herbs can help take a load off the immune system so it can fight the lyme better. the question is which to go after first, or to do them concurrently....
Posted by Squeegee (Member # 7219) on :
I have chronic Lyme and also had positive IgM for Epstein Barr.
While it's true that many, many people will test positive for past exposure to EBV, an immune suppressing chronic illness, like Lyme, will reactive it (or keep it chronic).
My LLMD feels that it definitely needs to be treated. I was on Acyclovir while on Minocycline and Amoxicillin. Haven't had another test so don't know how it affected it.
Posted by spookydew (Member # 8432) on :
I tested positive for EBV 2004, neurologist just told me last july. He said I was exposed to it. I have chronic lyme.
Posted by WildCondor (Member # 434) on :
I agree that you can't just ignore the virus in all cases, in some, they may need anti-viral meds. I tried ganciclovir, acyclovir, blah blah, did nothing. I even did Hydrogen peroxide IV, Vit C IV, you name it everything under the sun to kill the "virus" which the whole 10 years was Lyme disease. As soon as I was treated for Lyme my viruseses went to sleep for good.
One thing that helps this, besides antibiotics, and co-infection treatment, of course, is Echinacea. It helps your immune system put the EBV back into it's dormant state.
here is a protocol i did. Take 7 caps 3x a day for 3 days of Echinancea from PHARMANEX. Do this for 2 weeks, then take 2 weeks off, and do it again. Do that's 2 weeks of 7 pills 3x a day (21 pills) for 3 days, say Mon-Wednesday, then do it again the next week. Then take 2 weeks off and do it again. Echinacea works best when its pulsed and not taken daily. Try to find a high potency Echinacea supplement pill. Pharmanex now makes immune formula http://www.pharmanex.com/corp/product/solutions/immuneformula.shtml I am not honestly sure about the dose on that because it had Goldenseal in it as well so you may not be able to do the 7 caps 3x a day. Ask your LLMD the dose and brand of high potency Echinacea to use. Posted by Somerset (Member # 7534) on :
"Hello everyone", Kerryblue I really liked what you had to say, made alot of since. It sounded so familiar,use to have similar conversations with the ID nurses where I was employed. I love to hear all the different veiwpoints, you can learn so much by keeping an open mind & using common since. "Peace be be with us all", Robin
Posted by Moose (Member # 8545) on :
Wow! Thanks for all the interesting comments about this. This takes some time for me to digest as I don't know what to do first. I wish both could be treated at same time.
I just saw my PCP yesterday and told him about some of the stuff I found out here and he has finally agreed to send me to John Hopkins to see a lyme specialist there, as he apparently doesn't know a lot more about treating lyme and so forth.
I told him that just giving me antibiotics for a long period of time is not going to do the trick, and that I needed to know more about what to do to help myself recover, such a nutritional diet, vitamins, co-infections and so forth. This is where I hope a lyme specialist will be able to fill in the picture.
I just hope that the lyme specialist at John Hopkins will be able to help me, and not just put me through a bunch more tests and send me back to my PCP. Eeek! I am so tired of this, every time my doc sends me off to see various specialists and have more tests done.
Has anyone been sent to John Hopkins Hospital for lyme?? If so, did it help?
Posted by 5dana8 (Member # 7935) on :
I also tested positive to EPB and CMV the first year of infection with lyme.
That year was crazy. I, who never seemed to get anything , also got bladder infection & brocitisis.
I don't know. But I think my infection with lyme lowered my immune responce or my immune system was so busy fighting off the bb that it feel down on the job and couldn't keep up.
just my personal opinion. ___________________________
Make sure you talk over everything first with your LLMD
[ 09. March 2006, 11:41 AM: Message edited by: 5dana8 ]
Posted by mbroderick (Member # 5220) on :
I think that EBV shows up a lot in people with chronic Lyme. The blood work may show a past infection, not current. I'm taking the anti-viral drug, Valtrex, along with the Lyme abx etc. etc. etc. Immune system support is probably of greater importance than the work that the abx are doing.
Posted by 5dana8 (Member # 7935) on :
hi Mbroderick
Ca I ask what you are doing for immune support?
Thanks
Posted by Isilme (Member # 8578) on :
quote:Originally posted by Moose: How many of you have Lyme Disease with Epstein Barr Virus??
I have chronic neuroLyme and chronic EBV. I had momo in 1999. My EBV titers are very high now.
I also have Ehrlicia and s/sx of Babs and my thyroid is way out of whack!
Posted by Nebula2005 (Member # 8244) on :
"Chronic or reactivated" EB Jan 2005, IgG antbodies (both VCA and EA) way HIGH.
My daughter had mono in 1998, (could explain the antibodies). I don't remember ever having it--but I was sick so much.
My Lyme doc warned me that treating the Lyme (started last month) can reactivate the EB, to be aware that we may have to deal with those symptoms, too. What the difference is, I forgot to ask.
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