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copwife
New Member


Date Joined Feb 2009
Total Posts : 6
   Posted 2/13/2009 3:42 PM (GMT -6)   
Hi everyone,
I have a question, I went to get a second opinion on my lyme test the other day with an infectious disease doc, and she said the test is actually a false positive.
She explained that the test only showed 1 positive  out of 10 on the igm, which needs 5 to be positive. And on the other test needs 2 positives out of the 3, i only had 1. Has anybody had this happen? Was she wrong? Why was there even 1 positive?
I still feel crappy, (epstein barr). Any answers???????

IH8Ticks
Regular Member


Date Joined Jan 2009
Total Posts : 296
   Posted 2/13/2009 3:57 PM (GMT -6)   
The tests are notoriously unreliable. I had a very similar situation. Officially, I've tested negative for Lyme, but I have all the symptoms, and the treatment works on me. That's why you need an LLMD (lyme-literate doctor). You need someone who understands that he/she needs to make a clinical diagnose and needs to check for co-infections.

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 2/13/2009 4:27 PM (GMT -6)   
I agree with IH8ticks. You need an llmd. Infectious disease docs are notorious for missing lyme.

What band did you have turn positive?

That will be a good indicator. That test that she is talking about actually have a HUGE number of false negatives. She's going by CDC standards yet I even think the CDC states that the test should not be used to diagnose. It is a clinical diagnosis. The test is just a tool (a poor one) for the doc to use. Your doc really shouldn't write lyme off just because of this test.

IH8Ticks
Regular Member


Date Joined Jan 2009
Total Posts : 296
   Posted 2/13/2009 4:34 PM (GMT -6)   
I should also say that my infectious disease doctor was useless. I emphasized that I was most likely bitten by a tick, given my circumstances and my mysterious rash. She tested me for many things, but the only tick borne illness I was tested for was Lyme. When it came back negative, she said there was nothing more she could do for me. It wasn't until I went months later to an LLMD that he tested me for other tick diseases, and I test positive for babesia. I could've been treated months earlier if any of my other doctors had bothered to test me.

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 2/14/2009 8:36 AM (GMT -6)   

Hi copwife, welcome to the board!  How long have you been sick?

Which lab did your Western Blot?  No test for Lyme is completely reliable, and resutls can vary by lab.  Although the CDC requires a large number of bands to show for it to be considered positive, many people who have Lyme do not have this many bands show.  Lyme doctors often focus on which bands show, some are specific for Lyme. It is important to be tested by a Lyme reputable lab such as IgeneX in Palo Alto, CA.  They have more sensitive tests and list more Lyme-specific bands on the Western Blot.  Testing should be used as an aid in diagnosis not solely for diagnosis.  A lyme knowledgeable doctor will not rely solely on test results to diagnose tick-borne illnesses. 

It is very important to see a knowledgable doctor.  Infectious disease doctors are not usually the best to see unless they specialize in Lyme.  Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma.  Many people who have Lyme are co-infected.  It may affect treatment choice and progress.  It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.  Have you been tested for these?

If you need a doctor recommendation, you can email me at ko_@bellsouth.net 

It is also important to learn as much as possible.  I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/burrascano_0905.html  He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols.  I also recommend the books "Everything You Need To Know about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner and "The Lyme Disease Solution" by Kenneth B. Singleton MD.

 


copwife
New Member


Date Joined Feb 2009
Total Posts : 6
   Posted 2/14/2009 8:33 PM (GMT -6)   
Hi all,
Thanks for all of your responses, my report reads as follows,
lyme disease igg and igm:
18 kd igg band non-reactive
23  same
28 same
30 same
39 same
41 igg reactive
45 non-reactive
58 non
66 non
93 non
 
continued with
23igm non-reactive
39igm non
41igm reactive
b.burgdorferi ab igm wb - negative
 
so does anybody know what this means?
HEEEELP!!!!
 

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 2/15/2009 8:42 AM (GMT -6)   

copwife, it is important to be tested by a Lyme lab such as IgeneX in Palo Alto, CA.  They list two additional Lyme specific bands--31 and 34--that labs such as Quest do not.  Which lab did your test?

Band 41 is often the first to show in an infection.

Have you been tested for the co-infections listed?

In my opinion, the most important thing someone who has or who may have Lyme can do is see a Lyme knowledgeable doctor.  


copwife
New Member


Date Joined Feb 2009
Total Posts : 6
   Posted 2/15/2009 9:03 AM (GMT -6)   
It was quest, how do i go about being tested by igenex? not sure if i was tested for co-infections is sjogrens a co infection, if so than it was negative.
Where the hell do i go? We have the clevland clinic in so. florida, maybe i should go there?

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 2/15/2009 9:27 AM (GMT -6)   

copwife, you can contact IgeneX at 800-832-3200.  They can send you a test kit for Lyme and the co-infections Babesiosis, Ehrlichiosis (two types HME & HGE), and Bartonella.  You can take the kit to doctor who is willing to draw the blood and send it to them.  The results will be reported to the doctor only.  It typically takes about three weeks.  They are located in CA, so be aware of the time difference.  Sjogrens is not a tick-borne disease.

Big medical institutions such as Mayo and Cleveland Clinic are typically not knowledgeable about tick-borne diseases.  If you would like a doctor recommendation, you can email me at ko_@bellsouth.net  


Jeminij
Veteran Member


Date Joined Dec 2005
Total Posts : 1336
   Posted 2/15/2009 9:43 AM (GMT -6)   
I had the same thing happen. When I was going to doctor's to find out what was wrong with me they did a western blot at an infectious disease dr and I only had one positive band. Well, needless to say they told me I didn't have lyme and had emotional issues and should seek mental help. I didn't listen to them and keep on going to find an answer. When I found my lyme specialist and had another western blot test done, I had all 5 positive bands by that time and was deathly sick. Had the first doctor treated me then I wouldn't have gotten so bad and had such a long battle with this illness.

So, basically, listen to your body. Find another doctor to treat you if you think you have lyme. Don't let it go on untreated for too long and the way I see it, if you didn't have lyme, even one band wouldn't show up. It is just the guidelines in the NIH that tell them that they need more bands, but it isn't real life or the way lyme works. So, you know best if you aren't well and keep on going and maybe you can find a lyme specialist because they will treat based on symptoms alone and not rely on blood tests. They are more of a back up than to use for diagnosis.

copwife
New Member


Date Joined Feb 2009
Total Posts : 6
   Posted 2/15/2009 5:47 PM (GMT -6)   

Thank you so much,

Ticker, i will e-mail you later for some more info, again thanks! Until i can find a llmd close to palm beach county, florida, i will try another infectious doc and tell them that i am sick, and have a positive blood test, have them take it again, and demand to be treated! The sooner i can be given antibiotic therapy the better, i am asuming thats the correct way to go? I am so tired of being tired!!! i can barely take care of my 21month old!!! I still do not understand how i got this, just the begining of last month i started feeling sick, like wham out of the blue. Is that how it usually starts?

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