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Newly released blood culture test for Lyme!!!
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> Newly released blood culture test for Lyme!!!
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Traveler
Forum Moderator
Date Joined May 2007
Total Posts : 8723
Posted 11/8/2011 4:01 PM (GMT -6)
HI All,
I just received this in my email today!! It's such exciting news!! Rather than searching for those elusive anti-bodies that some of us don't seem to produce enough of, this test actually looks for the infection!!! It's called "the Borrelia Blood Culture", and Advanced Laboratory Services are the ones performing it!
Here is the
opening statement on the site:
"Advanced Laboratory Services is pleased to announce that the Borrelia Blood Culture is now available for clinical use in 48 states so far. We have already been accepting samples and reporting results!
Please note:
• It is NOT yet available in the states of Florida and New York- currently applications for these states have been filed and are pending.
• Unfortunately, international samples (including from Canada and Mexico) cannot yet be accepted until logistical issues are addressed and solved, but we are working on this."
Who can order this new test? Here is what they have to say:
"Based on the laws of Pennsylvania where we are located, it must be ordered by a medical practitioner defined by them as an MD, DO, CRNP, PA-C, and Certified Nurse Midwife. If you are an ND, and even if you may order tests in the state in which you practice, you still will need to have the test ordered by the type of practitioner on Pennsylvania’s approved list. Note that it also cannot be ordered directly by the patient.The practitioner must request a blood drawing kit from Advanced Labs."
Here is the link to Lymedisease.org, where you can read this press release and get the contact info for this Lab;
www.lymedisease.org/news/lyme_disease_views/culturetest.html
Boy oh boy!!!
I sure hope this will help
a lot
of people who need these answers!!
Co-Moderator, Lyme Disease ;)
Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
I break up my post because my eyes have been effected by TBI's as well, making long paragraphs very hard to read.
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Carrie48
Veteran Member
Date Joined Mar 2010
Total Posts : 638
Posted 11/8/2011 8:01 PM (GMT -6)
Interesting!!!!
DX with Lyme and Erlichosis in January 2010. January-August: Biaxin and Amoxicillian. September 2011 - ? on Rifampin and Zithromax. Symtpoms mostly neuro and have 20 small lesions on brain.
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LymieAngel
Regular Member
Date Joined Sep 2011
Total Posts : 466
Posted 11/8/2011 10:14 PM (GMT -6)
that makes me happy for sure....i got several people coming to me wanting help...i give them docs name then they come back and tell me they cant afford it...so this test...if put in ANY doctors hands...would be alot easier for people who cant afford specialists
getting better.......
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Traveler
Forum Moderator
Date Joined May 2007
Total Posts : 8723
Posted 11/9/2011 9:50 AM (GMT -6)
Hi again Broken~
Something you can tell those coming to you for help is that they can go to an Alternative Medicine doc - like an Naturopath or Oriental Medicine doc- and generally get good help with less cost. They do need to be sure that the doc has treated TBI's before, as they are tricky for any doc, but with some internet checking and a phone call or two, they would know.
Of course if they want to go with the abx route, if their primary care doc is willing, they might be able to have him/her work with a LLMD for a lot less cost. Of course not all LLMD's or all primary care docs will agree to this, but some do!!
By the way - a big hearty thank you for helping those that you can!!! That's how we can change the way TBI's and the patients are treated!
Co-Moderator, Lyme Disease ;)
Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
I break up my post because my eyes have been effected by TBI's as well, making long paragraphs very hard to read.
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Apple-a-Day
Regular Member
Date Joined Oct 2011
Total Posts : 38
Posted 11/9/2011 2:16 PM (GMT -6)
From what I have heard it costs around $500 and it's all out of your pocket - no insurance covers it for now.
Also - you need to stay off all antibiotics (probably off all herbals with antibiotic properties as well) for at least a month before the test.
And as much as I have read Tom Grier, Lyme bacteria does not stay in the blood, but goes into your tissues, joints, brain, so it might be difficult to test for even when off antibiotics.
But let's wait and see - maybe it will prove to be more reliable then all the antibodies tests.
I would like to test my son at some point (I am afraid he might have congenital Lyme), but I am waiting for now.
By the way - how much is the Igenex testing?
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twinkl1999
Regular Member
Date Joined Sep 2011
Total Posts : 194
Posted 11/9/2011 4:39 PM (GMT -6)
The complete lyme panel from Igenex was about
$500; insurance only reimbursed me about
$150.
I then did a lyme western blot and a babesia test from Igenex, and that was almost $600...I'm pending my insurance claim to see if I get anything back.
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Traveler
Forum Moderator
Date Joined May 2007
Total Posts : 8723
Posted 11/9/2011 5:23 PM (GMT -6)
I believe that all of the good testing will cost quite a bit, so I'm just hoping that the better tests will make it worth spending that kind of money. Right now the testing that was available before this one came out, missed at least 40% of those who were truly infected, and as much as 60%!!
Personally I don't see any reason for me to be retested, but I am hoping that those who will be needing these tests will soon have a more reliable test ... since we can't seem to convince even our own specialists that testing isn't supposed to be used for diagnosis, and yet they still do this.
Co-Moderator, Lyme Disease ;)
Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
I break up my post because my eyes have been effected by TBI's as well, making long paragraphs very hard to read.
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bucci
Veteran Member
Date Joined May 2006
Total Posts : 1487
Posted 11/9/2011 6:46 PM (GMT -6)
it will never be approved in NY.
They control the Stoneybrook Lyme Lab as it is.
This is great we have this forum to pass this on.
Pa has the most REPORTED cases of lyme.
WHY?
Because they test people.
thanks for that info
20 yrs of doctors . DEC. 2009 tested positive for lyme, bartonella, ehrichiosis, HHPV6, chlamadyal pneumonia .
parasites :strongylides, diaoebia fragialis, hook worm.
Hep C ....fibro, rhumatoidal,depression,
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LymieAngel
Regular Member
Date Joined Sep 2011
Total Posts : 466
Posted 11/9/2011 8:38 PM (GMT -6)
wow.....the more i learn about
this disease...the more rage i feel....because most of us have suffered needlessly.....im beginning to understand why people go "postal"...i bet that those people who went batty had lyme...lol...geez
getting better.......
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Apple-a-Day
Regular Member
Date Joined Oct 2011
Total Posts : 38
Posted 11/10/2011 11:02 AM (GMT -6)
twinkl1999 said...
The complete lyme panel from Igenex was about
$500; insurance only reimbursed me about
$150.
I then did a lyme western blot and a babesia test from Igenex, and that was almost $600...I'm pending my insurance claim to see if I get anything back.
I suppose the complete Igenex Lyme panel included Elisa and Western Blot? Anything else?
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twinkl1999
Regular Member
Date Joined Sep 2011
Total Posts : 194
Posted 11/10/2011 11:19 AM (GMT -6)
The complete lyme panels includes IFA, IgG and IgM Western Blots and PCR.
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Cat111
Veteran Member
Date Joined Nov 2010
Total Posts : 571
Posted 11/11/2011 7:24 AM (GMT -6)
If I am reading the info correctly on the new Lyme test offered in PA, they use DNA sequencing in tandem with other methods.
This is interesting because the 5000 yr. old Ice Man was found to have Lyme through DNA sequencing.
If DNA is the most useful and new tool in determining Lyme..... and produces unrefutable test results (Negative or Positive) then FINALLY those of us who test Neg or Indeterminate through the unreliable methods of ELISA and West. Blot.........will hopefully have an answer.
I am off all antobiotics currently (two weeks so far with no relapse) and will go the distance of 4-6 weeks so that I can take this new test.
Anyone else planning to do the same?
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Traveler
Forum Moderator
Date Joined May 2007
Total Posts : 8723
Posted 11/11/2011 10:04 AM (GMT -6)
CONGRATS Cat!!!
Sooo happy to hear that you are two weeks into this and still no symptoms!! Woo hoo!!!
Please let us know how you are doing as you have time - I figure you are out doing all kinds of things now that you are plagued with symptoms!! Enjoy!
We would
all
be interested, I'm sure, as to what the test reveals for you! I wish I could afford it, but we are on a snug fixed income.
Co-Moderator, Lyme Disease ;)
Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
I break up my post because my eyes have been effected by TBI's as well, making long paragraphs very hard to read.
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exgringo
New Member
Date Joined Jan 2010
Total Posts : 6
Posted 1/16/2012 7:31 PM (GMT -6)
I just got my results back from Advanced Laboratory Services Lyme culture test.
I got the test done for free because I was IGG positive on an IgeneX test and this new
lab wants to check their statistics against other results I guess.
Anyways, my culture tested positive for Borrelia Burgdorferi after a two week culture.
I hope this lab and procedure is legitimate because I would like to have confidence in a diagnoses for once,
and have others respect the source as well (so i can get well-deserved disability)
I pray it helps many others as too.
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Zeusy
Regular Member
Date Joined Jan 2012
Total Posts : 237
Posted 1/16/2012 9:19 PM (GMT -6)
Darn! I'm in Canada! And I don't really want to stop antibiotics for a month. But still-hopefully this one is better than what we have!
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bucci
Veteran Member
Date Joined May 2006
Total Posts : 1487
Posted 1/17/2012 3:12 PM (GMT -6)
doemit test for brtonella?
has anyone tried the Neuroscience Labs lyme test?
20 yrs of doctors . DEC. 2009 tested positive for lyme, bartonella, ehrichiosis, HHPV6, chlamadyal pneumonia .
parasites :strongylides, diaoebia fragialis, hook worm.
Hep C ....fibro, rhumatoidal,depression,
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rosesinjanuary
Veteran Member
Date Joined Oct 2007
Total Posts : 748
Posted 1/28/2012 12:44 AM (GMT -6)
This is good news if we had a definitive test it would certainly help so many people.
The weird thing is I had my blood cultured years ago, I can not remember the year, but it was quite awhile ago.
It took a long time but because I had the ems treatrment started well before the blood was cooked.
It showed lyme and leptospirosis.
Do you know of any other lyme support groups or even another person that is chronic and still lquite sick
, it'd be wonderful to have someone like that. If you do would you ever give them my e-mail? I want to keep my own experience separate because its just not typical and it could be discouraging if someone did not realize I am not typical. Lol thats an understatement. I might throw one topic out but its more of a figure somthing out question. thanks
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Traveler
Forum Moderator
Date Joined May 2007
Total Posts : 8723
Posted 1/30/2012 4:09 PM (GMT -6)
Roses, you said "Do you know of any other lyme support groups or even another person that is chronic and still lquite sick "
I was until just several months ago, when I finally got the treatment that my body would tolerate.
Are you wanting a pen pal or someone to talk your treatments over with? That might make a difference for some.
Co-Moderator, Lyme Disease ;)
Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
I break up my post because my eyes have been effected by TBI's as well, making long paragraphs very hard to read.
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