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04/19/2012 09:39 AM

Waiting for results is so hard!(page 2)

pampe
pampe  
Posts: 2357
Group Leader

bbl, hang in there....that's what I did while I waited...the research

good plan

let us know!

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04/19/2012 07:37 PM
bbl2011
 
Posts: 167
Member

Thanks pampe Smile

04/19/2012 07:46 PM
littlegirlbigdream
littlegirlbigdream  
Posts: 643
Member

I thought I would just put my insight into this. For me it took a full year for my parents to even agree to get me tested through Igenex.

But then finally got the test the wait was so hard.

But for me the worst part was I had to wait another half a week untill I could get the resluts and knowing they were in and no one telling me what the resluts were just about did me over.

Just hang in there though, they will be in soon and once you get them it will be worth the wait.

This is the time to gain as much knowladge as you can, because once you start treatment you are going to get worse and it will be much harder to retain valuable information.


04/20/2012 02:57 PM
bbl2011
 
Posts: 167
Member

Well, I think another day has passed without being able to have anyone even pick up at my doctors office or a call back.

My doctor is great, but he only has one woman working the desk and all the calls go right through the voice mail 99% of the time. It's a very small practice.

Also, because she is not a nurse, I always have to wait for him to look at them. She can't just glance at it and tell me anything.

I have thought about switching doctors because I literally can never get through to them and always have to wait for even the front desk to call me back for anything.

My worry is how will this play out if I start treatment?? What if I have a problem

anyway, thanks for listening to my ramblings..


04/25/2012 07:58 AM
bbl2011
 
Posts: 167
Member

Hi,

I just wanted to let everyone know my test results finally came in.

The test was the my Lyme ITT test through neuroscience/pharmasan labs. It came back VERY positive

I am going to put my review of this test/ thoughts on another thread sometime later, but for now here were my numbers.

Anything over 2.6 is considered positive:

List of antigens

VlsE-1 4.3

p100 3.7

OspC (band 23) 5.1

DbpB 3.1

DbpA 6.4

With that said, because the test is so new, and has some controversy surrounding it's sensitivity, I have decided to take one last test at Clongen since it's close by to me.

I had blood drawn with them yesterday and should get the results back soon.

I figure three tests- one standard labcorp, one from experimental Pharmasan, and one at a lab with all bands will help give me the most complete picture I can.

Thank you all for your support and helping me get through the wait of that last test Smile

emphasized, bettyg, leader

Post edited by: Bettyg, at: 04/25/2012 04:24 PM


04/25/2012 04:26 PM
Bettyg
 
Posts: 32225
VIP Member
I'm an Advocate

is there a reason you didn't go with 100% accurate, ADVANCED LAB SERVICES in the east coast area?

it's brand new last fall and dr. burrascano is invovled in that lab !

bettyg, leader


04/26/2012 08:56 PM
bbl2011
 
Posts: 167
Member

Thank you for the information! I just looked into them.

The one thing I wonder about that test is, Lyme is usually not always in the blood, but in various tissues.

So if they try and culture it out of a patients blood, and it is present only in the tissue of that individual, we are back to square on with false negatives.

What do you think?


04/26/2012 08:58 PM
bbl2011
 
Posts: 167
Member

Also, I got back the final test.

I had IgM bands 41 and 39 this time. And band 23 did a disappearing act this time.

So all together I have had in the past two months: IgM 23, 41 and 39 plus the above test from Pharmasan that tested the T cell reaction to the above antigens.


04/26/2012 09:30 PM
bbl2011
 
Posts: 167
Member

Here is an article about articulating better what my concerns are for that test.

"Culturing Borrelia burgdorferi:

Culturing spirochetes can be difficult (see my article on the Lyme Alliance web site). Some spirochetes, such as T. pallidum, which causes syphilis, have never been successfully cultured in culture media, and are maintained only in live animal models.

Borrelia burgdorferi is difficult to culture. The University of Minnesota, when comparing culturing of erythema migrans rashes to their early PCR test, reported culture success rates as low as 4%.

As discussed earlier, culturing blood is frustrating because the bacteria do not like the blood stream. The same is true for the spinal fluid and urine. Therefore, once again we are left with the option to biopsy at great expense and risk, or to use other, less costly, tests.

Culturing is the gold standard for confirmation of an infection, and a positive culture is highly important. However, as a diagnostic tool in Lyme diagnosis, culturing has a poor success rate, and the cost and time often make it prohibitive except as a research tool.

The technique of culturing the non-classical form of the spirochete known as spheroid-forms or L-forms is controversial and has yet to be corroborated and commercially reproducible.

L-forms seem to be shed by the spirochetes when they are stressed and moribund. They appear to be able to transform back into viable spirochete indicating that the vesicles retain a full compliment of bacterial genetic material.

Until the link can be established between these L-forms and disease, and the cultures can be corroborated by PCR and consistently reproducible by other labs the presence of L-forms will be debated by opponents as artifacts and aberrations.

Just as in the case of PCR and antibody tests, culturing can also be affected by the species of bacteria that is present. Some laboratory strains of Lyme disease have been known to take months to culture.

Most hospital labs don't even stock culture media that is suitable for culturing Borrelia, and the choices for culture media are extremely limited. Until better techniques and culture medias are made available, culturing spirochetes is a techniques best used as a research tool.

But the inexperience of hospital labs with spirochete culturing techniques is by far the biggest hurdle in seeing this test flourish."


04/27/2012 02:28 AM
Bettyg
 
Posts: 32225
VIP Member
I'm an Advocate

bb,

when you copy/paste articles here, we MUST show the direct link where info is gotten and the COPYRIGHT info at the bottom of screen for all we bring here.

or you can get into troubles.

bb, you mentioned advanced lab question, please call them and ask them this; they are in the best position to explain what they do, etc.

then let US know too here; start a new one forthat info

subject: advanced lab services; add more what you can in limited area; thanks!

bettyg, leader

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