posted
I was diagnosed with Epstein Barr and have Lyme antibodies with CFS.
Is this common?
Could Lyme still be the underlying cause? What should I pay more attention to?
Kevin
Posts: 22 | From Texas | Registered: May 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Epstein Barr is one of the, if not the, most common viruses in the U.S. Almost every adult has been exposed to it.
There are definitely people who think that Epstein Barr is the cause of CFS. But if you have Lyme antibodies, then Lyme is definitely one of the culprits.
Many people are living healthy lives with EBV antibodies. Some are sick.
Think of it like this...Your body might have been fine functioning with the EBV exposure, but they it was exposed to Lyme, and that was too much. The infection that broke the camel's back.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Thank you for the quick response. I left a message with my Infectious Disease Doc today to ask if I can start treatment for lyme and skip the lumbar puncture.
He wants to do an LB and then treat me even if it's negative??? Then why not treat me now???
I guess that makes too much sense.
Kevin
Posts: 22 | From Texas | Registered: May 2007
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bettyg
Unregistered
posted
kevin, sorry to burst your bubble but MOST infectious docs HURT us; not help us by giving us UNDER THE TREATMENT MEDS NEEDED TO CURE US OR PUT US IN REMISSION.
do a search in medical for lumber _____
search is at the top under new post type in 2 words; i can't remember other! MEDICAL TOPIC ... later do 2nd search if 1st doesn't give you anything and show in BODY TEXT
any date...make sure you EDITED MY PROFILE AS I TOLD YOU TO IN MY ADVISE/LINKS NEWBIE'S PACKAGE...
leave membership no. blank! click send; read all replies!
jan. 1970, i was dx with mono now called epstein barr virus; that was the beginning of my CHRONIC LYME 37 yrs.; 34 yrs. misdiagnosed.
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I wouldn't let anybody do a lumbar puncture on me, however, that is just me.
If he is going to treat you anyways, why do the lumbar puncture???
In my very humble opinion, sounds like a guinea pig experiment.....
There are many posts here on Lumbar punctures....and how much info they didn't provide....
However, they are known to provide lingering pain.
Please find yourself a Lyme Literate Medical Doctor...soon as possible.
You can refuse to have procedures done....don't let anybody brow beat you into them...
BTW, My Epstein Barr and CMV titers are very, very high.
This is since I have been dx. with Lyme Disease. Very common.
My LLMD says we are going to wait until we've got the Lyme beaten down and then hopefully
My own immune system will take over again and successfully "control" these infections.
Please, please find a LLMD.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Kevin,
Sounds like the spinal tap is for your doctor's research. (Unnecessary for you and your treatment perhaps?)
If you do it, be prepared to have folks bring you food for up to several days to two weeks! I could not stand for two weeks after my spinal tap.
Posts: 2557 | From home | Registered: Aug 2006
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
When I first got sick the ducks gave me two spinal taps to try to diagnose the lyme.
When I went to Dr. B he said that lyme hardly shows up in the spinal fluid and he never orders this test. I believe he also states this in his guidelines.
Posts: 1603 | From ny | Registered: Aug 2006
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He wants to do an LB and then treat me even if it's negative??? Then why not treat me now???
I guess that makes too much sense.
Kevin
This is because he can charge for the LB is additional money in his pocket (many Docs often run needless tests just to faten there wallet!), Put your foot down with him, if you dont want it, refuse the test, if he is not an LLMD you might want to switch to one, if he is an LLMD he should be willing to treat with out the LB, if he refuses to treat then find another LLMD.
There are many ups and downs to the treatment, so be patent, and hang in there.
Also the Eppstien barr is a virus and the critters that cause lyme are bacteria, Virus's cannot be killed, are always present,
best you can do with them is work on building up your immune system, and a strong immune system will keep them at bay
(90 percent of the US population has Eppstine bar virus, and most dont even know it as there immune systems fight it off,
but when you have a weakened immune system it can wreck havock on it and make you feel so tiered you think you are dieing)
Lyme are bacteria, and bacteria can be killed off, if caught early within the first few weeks 8 to 12 weeks of treatment will kill off the bacteria,
the longer one has had the bacteria in there system the harder it will be to kill off, as it has had plenty of time to spread thruout the body, and can and does go any where, this is why
there are so many symptoms, as it can affect muscels & joints, vital organs, (heart, brain, liver.....) Can hit the nervous system, respretory, digestive tract..... Later Bruce
-------------------- CFS for 20 Years then found LYME the root cause! Am dealing with several viruses also. Posts: 89 | From Alliance Ne | Registered: May 2006
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posted
EBV can be in the mix. The lyme wrecks the immune system so that your body cant fight off the other viruses.
Skip the lumbar puncture, per other posts here. Very rarely shows the lyme.I have neurological lyme and my puncture didnt show a darn thing. Of course, at that point in time I didnt know this information and could have saved myself an unneccesary and dataless procedure. Get treated by a llMD!
Posts: 719 | From Delaware | Registered: Jan 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
iceskater Member # 8655 posted 13 June, 2007 05:38 PM -------------------------------------------------------------------------------- EBV can be in the mix. The lyme wrecks the immune system so that your body cant fight off the other viruses.
Ditto. I hope you can find a good LLMD & feel better soon.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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