posted
Hubby called the lab to see if they had any idea when they would be open as he has an upcoming LLMD appointment.
According to Amanda, the President of the lab, they are now open to the public. We only got a message on our answering machine so I do not know how much the bartonella tests cost.
Also was told to check with our LLMD regarding whether or not a 3 week break from antibiotics was preferred to improve testing sensitivitiy.
Hubby seems to be having more neurological symptoms on his more aggressive bart treatment and is understandably worried about stopping antibiotics and also worried that the test will not find bart. Hoping his LLMD returns his call this week so we know what to plan for.
Anyone interested in testing with the lab needs to have their doc call the lab for test kits and/or instructions.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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I see my doctor soon, so I will ask if he knows more.
I was just thinking to PM you and ask about your husband and the new med regimen.
I'll be in touch if I hear anything.
Posts: 819 | From East Coast | Registered: Apr 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I talked to Amanda last week. She indicated that the lab was up and running. My doc had been sending blood samples for control studies....charges were about 100.00.
I *think* the test is now 500.00. This according to my doctor at last weeks appt..
Amanda would not give me the price over the phone, only indicating that my doctor was offered a reduced introductory fee....
If you get further info as to price Bea, please post. Thanks.
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Sounds very expensive to me. How many people are going to get tested at this price?
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
My LLMD was sending a blood sample there as part of their "research" effort, and I was charged $375...I have no idea if the price will go up now.
Having been through the lousy, lousy, Bartonella testing currently available (and tested negative), but have Bart symptoms and need treatment, I'll pay the $500 if means I might actually get a diagnosis so treatment can commence. Posts: 131 | From PA | Registered: Aug 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Is Galaxy a bart strains expert lab including the unknown BLO?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
I had the testing done free in the trial stages . I had to stop abx for 2 weeks. I tested negative.
Posts: 433 | From new york | Registered: Dec 2004
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I don't meant this insensitively, but can't think of another way to ask.....why spend that kind of money to get tested? Because most of us have already tried the Bartonella drugs....so how would a positive or negative change treatment?
$500 seems like a lot. I understand if this is what it costs to do this testing....but by the same token, I hate to see Lyme patients continue to drain their pockets over testing. Posts: 4590 | From Midwest | Registered: Jun 2008
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
are they able to run sensitivity tests to see what abx will respond to the strain they are finding?
if not how is this different than the Fry Labs test?
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
Dr. Breitswerdt has identified 22 strains of Bart. I would love to know which strains I am carrying around.
It seems to me that treatment would be different for different strains. There is a medical director on board there that will talk to your doctor regarding treatment.
Posts: 677 | From Virginia | Registered: Sep 2002
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hoosiers, my doctor said that he will treat Bart clinically instead of having his patients pay that price....if, indeed, the price IS 500.00.
Map, Galaxy IS an expert lab in bartonella testing. Kitty has posted several links and articles about Dr. Breitschwerdt and his work.
Currently, labs are running tests for 2-3 strains of Bart. Over 29 strains have been identified. Galaxy has new testing, using a new method. Originally, this was all animal research as Dr. Breitschwerdt is a veteranarian.
I am not sure, but believe that the testing is for the various strains of Bartonella, not BLO.
Posts: 3975 | From usa | Registered: Aug 2007
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posted
At this point, there will be no susceptibility testing done to determine which antibiotics to use.
I was tested in the research phase and was positive.
I think maybe "BLO" is the other Bartonella species identified after only originally knowing about B. henselae and quintana. Just my thought.
This is not the same as Fry, as the Fry test was a blood smear.
The Galaxy test is a PCR, followed by incubating your blood in a liquid culture medium and further PCR's on that.
Posts: 819 | From East Coast | Registered: Apr 2009
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
kitty,
Which strain were you positive for? Just curious. Thanks.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I had testing done during the trial/research stages about 5/6 months ago. My LLMD waived the fee ..(i believe he consults/donates to them). I tested negative for bart but he's treating me anyway.
Posts: 42 | From Niger | Registered: Oct 2008
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quote:Originally posted by cantgiveupyet: are they able to run sensitivity tests to see what abx will respond to the strain they are finding?
if not how is this different than the Fry Labs test?
Finding out for sure that I am Bart-positive would mean that my doc will actually treat me for Bart, and not doink around anymore. My blood work is not great, but most of the numbers are not in the "not normal" range, but pretty close. Many of my numbers are worse than when I first came in with Lyme (white count, red blood cell count, platelets, CD-57, vit-d 1.25 levels are all significantly worse than when I was first treated).
I don't want to wait til I'm ready for the hospital before we start to treat. I have many of the symptoms, but he won't treat yet. I guess he's afraid of the Medical Board or something. Posts: 131 | From PA | Registered: Aug 2007
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quote:Originally posted by cantgiveupyet: are they able to run sensitivity tests to see what abx will respond to the strain they are finding?
if not how is this different than the Fry Labs test?
Finding out for sure that I am Bart-positive would mean that my doc will actually treat me for Bart, and not doink around anymore. My blood work is not great, but most of the numbers are not in the "not normal" range, but pretty close. Many of my numbers are worse than when I first came in with Lyme (white count, red blood cell count, platelets, CD-57, vit-d 1.25 levels are all significantly worse than when I was first treated).
I don't want to wait til I'm ready for the hospital before we start to treat. I have many of the symptoms, but he won't treat yet. I guess he's afraid of the Medical Board or something.
Bill-
I am anxiously awaiting your results!
Posts: 819 | From East Coast | Registered: Apr 2009
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posted
Interesting... I suppose there is zero chance of them ever accepting any insurances though?
I can see the test being useful for those who need to have a positive result for further therapy, or have docs who won't treat at all without one.
But for most seeing LLMDs, I think they generally diagnose and treat based of symptoms anyway? I mean, mine does -- he diagnosed Bart before I ever tested positive for it.
If it was cheaper, I could see more getting it done, but at $500 I'm not sure I see the point for most people here getting those tests.
Posts: 584 | From NY | Registered: Feb 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
TT Amanda at Galaxy. Test kits cannot be patient ordered (like we can from IGenex). Testing will be done through doctors only.
They are in the process of contacting doctors and she said if you want to be tested, have your doctor contact Galaxy.
She said that they are operating on very strict infectious disease standards and tests can be ordered by PHYSICIANS only....
(actually, I didn't speak to her, she left this message on my machine).
I was not able to confirm cost. I think that there will be a standard fee for physicians and then the doctor may raise the fee a bit to also make a profit.....this is the feeling that I get.
Posts: 3975 | From usa | Registered: Aug 2007
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CD57
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Member # 11749
posted
I also sent my blood in as part of the "research effort" back in December. I was off abx 3-4 weeks at the time of the draw. I tested negative for bartonella PCR or antibodies.
Now am trying to confirm what species I was tested for as they did not specify.
I agree with what someone else said above -- that the "BLO" may be another species of bart until now undiscovered.
Posts: 3528 | From US | Registered: Apr 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by kitty9309:
quote:Originally posted by Hoosiers51: kitty,
Which strain were you positive for? Just curious. Thanks.
Bartonella vinsonii berkhoffi, types I and II
I found this information on your particular infection:
Yes, I have seen that article. As a microbiologist myself, I am very interested in this from a professional as well as personal level.
I am sure that article will be of interest to others as well. I hope so, anyway. Thanks for linking to it.
Posts: 819 | From East Coast | Registered: Apr 2009
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posted
Rather discouraging the number of people who had negative tests from Galaxy.
Hubby got a 2nd call back from Amanda. She did indicate that the lab prefers patients to be off antibiotics but the final decision of course has to be made by the patient's doc.
After 2 1/2 years of aggressively treating bart with many different oral antibiotics and herbs hubby seems to be left with the option of IV antibiotics which we would have to pay for ourselves. So even if the test is $500 that is a drop in the bucket compared to paying for IV Vancomycin or one of the other new expensive IV antibiotics. I just can't justify spending all that money on IV antibiotics without some sort of test that at least still shows he has an unknown bacteria.
If his LLMD will agree hubby plans to stop antibiotics for 2 or 3 weeks and redo the Clongen blood smear and do the Galaxy bartonella test at the same time. Steve has his LLMD appointment on 4/27 so it will be a couple of months yet before we have the test results.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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