lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
my primary agreed to test me for the following:
HHV-6 EBV CMV ParvoB19 Coxsackie B
and mycoplasma pneumonia Chlamydia pneumonia
i told he i needed titre numbers not just a pos or neg-she agreed and changed the way she wrote the order
they are not going yo any special lab-i didn't want to push my luck. so, what i need to know from the virus ppl is:
which tests will probabl be accurate if done at quest or lab corp?
after i get these results i'll see if it is worth fighting to get enterovirus sent to focus...i have fought so many times in the past to have tissue sent and they always do it wrong...such an added stress when you are already stressed from ssurgery
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
up
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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go to 1st blank line on left side, type in timaca click search send her the direct link for this in a pm from there ok! good luck
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i've been in touch with timaca-but what she tells ppl to do-the BEST thing to do...is really hard. if your doc is not signed up and familiar with the specialty labs its hard. she even has trouble.
i needed to get some idea of what is going on with me and virus's. i started with my primary-hoping to get some good results. then i was going to follow up with llmd...hoping he would do the harder ones.
neither of them are really wanting to do the testing-its me pushing.
so-i hope someone will come along and say-for ex "you can trust quest with EBV results"-or something like that---its gonna be over 1,000 out of pocket i think...i'm trying to be smart about it. i have paid for so many tests in the pasts that someone screwed up and they ended up being worthless to me
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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1Bitten2XShy
Unregistered
posted
Over 2 years ago I tested very positive for EBV (I had mono at 14) thru MDL labs.
My PCP for the heck of it had me tested several weeks ago thru Quest for EBV and CMV...I tested high positive for both thru Quest.
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
thank you 1bitten....this is what i was looking for
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Lpkayak, the real issue after spending all those $$$ will be getting a LLMD or PCP to treat. They don't care much I've determined after discussing viral issues with them. They don't want to know, believe they're incurable, and not worth their precious time. Just something to think about. Maybe a LLMD would think a bit out of the box, but the ones I've seen aren't particularly concerned.
I've had very high Cpn IgG titers that Timaca said were likely current infection. Docs didn't care. IgG means NOTHING to anyone but specialists like Vanderbilt, Stratton, etc. I tried contacting all these big players for advice via e-mail/phone and none cared enough to even respond to me, far less educate a local physician like Timaca recommended. Tough road for sure.
I'm not saying I believe this.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I disagree with seekhelp. We were just to a llmd in the midwest who takes viruses seriously. He is really thinking out of the box with a theory that untreated babesia could let these things (viruses) run wild. And he is, by the way, an infectious disease doc----an ILADS one anyway.
Furthermore, I have had great luck contacting the "big players" like Chuck Stratton, and he has always been gracious in returning emails with complete info.
We really need to remember that if there was a magic bullet Lymenet would not exist, we would all be cured. We are all (this includes our docs) running a bit blind, and most of the people involved (yes even those quacking ducks--not to include those IDSA monsters---) are just trying to do their best.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I don't mean all docs of course Sojourner. Just the ones I've encountered. My ID doc actually is willing to treat with anti-virals which shocked me.
Again, my experience only reflects my inability to get responses from Stratton and others. Others may have better techniques. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Before knowing I had Lyme, I was tested by the FFC through Quest. I have 6 viruses. My EBV was very high. My LLMD tested me for Q Fever, which came up positive, although not sure who he tested through.
Now I am using LabCorp, only b/c I had some billing issues with Quest.
Posts: 847 | From upstateNY | Registered: Dec 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
thank you all so much. this is really helping.
sojourner-i need to talk to you aboout doc but your box is full. can you email me at
posted
I know what you mean. The specialty lab test are expensive. And then there's the question of finding a doc who will actually treat you if you show up positive.
I convinced my LLMD to test me for EBV and HHV-6 through Labcorp. I don't have the results and don't remember how the lab request was written,unfortunately.
I have Lyme Encephalopathy, and it is all I can do to get the ball rolling on this.
But to answer your question, I think Labcorp is a step above Quest, and a good place to start. And asking for titers instead of positive or negative is more helpful.
Posts: 27 | From my own little world | Registered: Oct 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I tested low positive for mycoplasma pneumonia through Quest. It might have been IgG, can't remember, but I have since also tested positive for it through the specialty lab MDL for IgG and IgM....but of course it wasn't the same year so who knows how they compare.
So I think doing it through Quest would not be a waste.
Posts: 4590 | From Midwest | Registered: Jun 2008
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