posted
I'm super curious about the culture test through Advanced Labs? I know it's quite new and expensive, but has anyone had this test done yet? What were your results if you don't mind sharing?
Posts: 71 | From Missouri | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- For those who may wonder just what test this is - here are the basics about that new Borrelia Culture Test, compared to others:
I have been dealing with fibromyalgia, TMJ syndrome, skin rashes, and anxiety/depression (I had other symptoms that came and went, but those are the most consistent) for the past 11 years, since I was about 18.
For the past 11 years I was always conviced there was something else wrong with me, but doctors could never find a link to all my symptoms. I've never been as sick as many people talk about on this blog. I've always been able to go to work and have a social life. I'm a professional at grinning and bearing it!
Two years ago I had a tick bite/rash. I was put on 10 days of Doxy, which I know now is not enough , but before that I was tested for Lyme through LabCorp and of course it was negative.
The question has always been why have I had these symptoms for so long, but only had a tick bite just 2 years ago?
One year later in 2010, I noticed that not only were my muscles sore, but they burned all the time. I also felt like my knees, hips, back were getting worse. That's when I was diagnosed with mild arthritis at the age of 28. Still I don't feel so sick that I can't do everyday things.
I decided to get tested for Lyme through Igenex, and it came back positive. For the past year I have been seeing an LLMD, and treating with oral abx. It's never really made me feel any better, in fact I felt worse, because it screwed my digestive tract up even though I was on heavy duty probiotics, diflucan, and low sugar/low carb/ 0 alcolhol/gluten-free diet.
At my last visit in August my LLMD said get off of all abx and come back in 6 months. Now I have 0 treatment plan.
I'm about to turn 30, and desperately want to have kids. I want to know for sure if I have the bacteria actively living inside of me, NOT just antibodies for the bacteria.
I've already spent thousands of dollars on treatment, for a bacteria that I'm not 100% certain is there. I am 0% better after all that money. If I know I have it will substantiate what I've tried, and what I will do for treatment in the future.
My husband/family will be a lot more supportive and understanding of why I'm doing treatment, beacuse I'll have actual hard evidence with a photo and everything!
I realize it won't change the fact that Lyme is a big confusing puzzle. I realize it won't change the difficulty of treatment. But a piece of mind to me is worth $500.
I would spend thousands or more dollars to make sure that I do not pass this disease on to my future children. I would also love to feel better, too!
Posts: 71 | From Missouri | Registered: Jun 2010
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I'm kinda in the same boat. I just saw a new doc and she recommended I get the culture done to be sure for once and for all if I still have Lyme.
I also tested + with the Igenex Western Blot a few years ago and treating on and off since then but the last few times I'm not testing +. I have also spend a fortune on meds and would love to know def. what is going on in my body.
I know it's expensive but I think it's worth to get in our cases. Let us know how you do on it.
Posts: 247 | From Ca | Registered: Feb 2007
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-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I've noted a few references to people using this test because they were wanting to be "sure"... "positive no Lyme remains"... "100% sure not infected"... etc.
I am sorry to have to burst anyone's bubble, but this is important. VERY important, especially when someone may use this test's results to determine if they should become pregnant or in making plans for the future.
**** This test in NO WAY can say 100% sure you do NOT have Lyme disease. ****
IF it is positive, it is positive. But if it is negative it does NOT mean you don't have Lyme disease.
If it is negative it means the 2-4 teaspoons of blood taken from a patient on any given day didn't grow Borrelia in a dish in the lab using the new "investigational" medium and methods they are using.
You could have spirochetes in your brain, hips, knees, muscles, ears, eyes, bladder, etc and they will NOT be detected if you are not directly testing those areas.
From limited studies the lab determined the sensitivity of this new test is about 80% in the samples they took.
What about the 20% that were missed that they knew had Lyme?
The lab also admits people may need "several sets" of tests and even then they are ONLY testing the blood taken from you, and it is not testing your tissues, fluids, etc.
Doing several sets of tests for a "maybe" (?) result can be expensive.
Three sets of tests, for example (and some docs use to run 10 sets of PCR tests trying to get a positive so they could treat a patient), can cost $1,500 to $2,100 minimum, and it is VERY possible your insurance will not cover it because it is considered to be "investigational".
So PLEASE know that these tests, just like the other ones that have been developed over the years, can NOT determine if a person is cured or is still infected because they can provide a false negative.
And a negative test can hurt you by convincing your doctor to not treat, and your insurer to NOT cover your future expenses.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Bea,
The lab claims...
"All known strains of Borrelia burgdorferi sensu lato can be detected. When combined with PCR and DNA sequencing, the exact identity of the Borrelia can be ascertained."
That is assuming they get a positive from the blood culture to start with, and then are lucky enough to have a positive PCR.
Thanks for the explantion. I figured it wasn't going to be 100% accurate, but 80% isn't terrible. Even if I get the test done, and it comes back negative, I am going to take abx if I am able to get pregnant. I have a positive Igenex WB, so I don't think my LLMD would refuse to treat me anymore.
I really don't want this disease, but I have to admit: If the test does come back positive, I would ever so excitedly personally go share my spirochete picture with all the doctors that told me I was crazy for thinking I had Lyme, and didn't believe Chronic Lyme existed.
Posts: 71 | From Missouri | Registered: Jun 2010
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
I did the test last week. Three tubes of blood.
I barely got the doctor to agree to order. I hope that it is not implied somewhere that more blood might be needed at a later date.
If that is the case - I wish Advanced LS only required the doctor to sign for it all just once. Kits, orders - etc.
Then go back to the lab for more blood - if necessary. In my case Labcorp drew the blood as a courtesy.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
We wouldn't discourage someone from going through Igenex testing, so why would we discourage someone from going through newer more advanced methods of testing that are showing promise?
Bb culture nuts and bolts Sensitivity exceeds 80% if the patient is symptomatic at the time of blood draw and not on antibiotics for at least four weeks. All negative controls have remained negative so far As with all blood cultures, may need several sets to be sure Any positive test is significant, even if it is the only positive out of a set of three
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Lulu,
I'm not sure anyone is trying to discourage testing but just to be very clear that there is no test that can prove absence of borrelia.
This new test looks like it has some advantages.
If it's positive, of course that helps very much diagnostically to guide treatment.
If negative, though, that is no guarantee.
It's important to have that information. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
It's human nature to want certainty. We just don't have that in the Lyme arena at this time. That's why it's a clinical dx followed by a trial of ABX.
Julier, the Lyme rash is conclusive in itself. Since you have had these symptoms for years prior to the tick bite.....is it possible that you've had Lyme for a very long time.....maybe even from childhood???
Lyme can be dormant for long periods. Many people either don't see the tick, the rash or don't have symptoms immediately. Consequently the start of Lyme disease and co-infections is often overlooked.
Good luck......
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I think given the fact that Lyme is a clinical diagnosis, those who are wanting to become pregnant the absence of Lyme is not a clinical diagnosis. Therefore any assurance one can get in regards to the absence of Borrelia would IMO be invaluable. Additional CD57 testing would also be appropriate.
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, but before that I was tested for Lyme through LabCorp and of course it was negative.![[Smile]](smile.gif)
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