just wanted some feedback on those who have tested Neg on Elisa test. Without using Igenex!
Did you actually see the Lab report? and if so Did it say NEGITIVE or IND? (indeterminate)
Or did your Dr. just verbally tell you it was Negitive?
Just was curious how many lab reports said IND and patients told they tested NEG.
Posted by sutherngrl (Member # 16270) on :
If you are tested by you regular PCP, most likely you will be told negative unless you are blazing positive, which is highly unlikely.
Also the Elisa test is really a waste of money to begin with. A LLMD would never use an Elisa.
And most importantly LD is a clinical diagnosis!
But to answer your question, my regular doctor did do an Elisa and did tell me it was negative. I also got a copy of my Elisa and of course it was negative as most with chronic lyme are.
I soon learned that I needed to find a LLMD ASAP.
Please don't put any faith at all in the test, especially an Elisa.
Posted by massman (Member # 18116) on :
Elisa and Western Blot are false negative almost half the time. This means half the time they say you do not have lyme you ACTUALLY DO !
Nothing is cut and dried with lyme.
A clinical diagnosis is NO lab testing. IME it is a detailed physical exam, history and symptom survey. I feel most docs do not have the _____ to make the clinical diagnosis.
Posted by Lymetoo (Member # 743) on :
I've been on this board many years and I've heard hundreds of times that someone's ELISA or WB came back positive, but they were told it was negative.
Do not trust the doctor... sorry.
Posted by Amanda (Member # 14107) on :
If you are not using IgeneX, then the standard procedure is to run an Eliza test first. If that comes back positive, then and only then, will they run the Western Blot.
Since the Eliza is wrong almost 50% of the time, it is possible that the MD got a report back that simply said "negative".
Posted by t9im (Member # 25489) on :
Hi Jenn:
Our experience when our daugher first became ill in September the PCP order a Lyme test from Q Labs. Their standard procedure is Elisa, if positive then do WB. Won't do the WB unless specifically requested.
Elise is rigid for one band with no variation, NIH study had a 45% false negative.
She did have the WB done but the MD didn't request the bands in advance. Results negative.
WB redone by IGenex (covers more LB specific bands) overall results negative on IGG (with 2 positive bands and to IND (indeterminate, where the tech saw something so not a negative but not strong enough to be a positive).
I believe when they talk of these tests having a 95+% rate this is for the reporting criteria of the CDC so false positives are not reported. Unfortunately having DRs rely on this with the false negatives is crazy.
Posted by t9im (Member # 25489) on :
Also we tried to obtain the lab reports but they can only be obtained the the MD and while we had the MD's request after the fact since the reports had come back negative and the DR's facilities are on the other side of the controversy it didn't happen.
There won't be a next time as we'll go back to Igenex.
Posted by massman (Member # 18116) on :
LYME IS A CLINICAL D I A G N O S I S ! ! !
KNOW WHAT THIS IS ?
Posted by jenn (Member # 21687) on :
Only a LLMD is confident to make a CLINICAL DIAGNOSIS!!
That's why we are all here! But thanks for your sarcastic post!
Posted by massman (Member # 18116) on :
What about LLNDs, LLDOs, LLDCs ? I was well taught that a good history could diagnose correctly 85% of the time !
jenn the obsession annoys me.
I feel many people are obsessed with testing and really do not understand what a clinical diagnosis is. As a society we are obsessed with technology and think it can do everything. And anything Posted by purplemom (Member # 21064) on :
I asked for a western blot and got one--one postive band (lap corp) 41, ALL the rest were IND---yes I was told negative but always get my own medical records.
The reliance on the labs is disheartening. A neurologist I saw said, "A lot of very smart people believe those labs are accurate"
If your test is negative and you question the reliability most MDs will give you a somatic diagnosis--nevermind if you had a flu/viral like strange illness for 2 weeks followed by neck weirdness and excruiciating pain (upon the adminisration of steroids) followed by your 7 lb dog diagnosed with lyme who has been infested with ticks and sits on your lab every night and followed by your daughter being diagnosed with lyme after a CDC positive test, bell's palsy and fever. In light of being in an area where 50% of ticks are infected and you were completely IGNORANT.
What you do not remember a tick bite? Silly girl how could you have lyme (written in my medical record--pt thinks she has lyme but has not had a tick bite...ha ha what an idiot she is...she thinks she can get lyme without a tick bite) jack*** doctors don't even know that many people with lyme do not remember a tick bite.
Really, all I did was ask in the ER when I was unable to walk if the those lyme tests were reliable given the above and I was laughed at. Did I already say jack***?
Posted by t9im (Member # 25489) on :
massman
As a parent and having 6 MD's tell us it wasn't Lyme and Dr. J not being commital due to his issues with the medical board it was comforting to see a positive LB band, a couple of indetermindate LB bands and the spyro flagella band 41 double positive.
Now we know we are on the right path.
Posted by Lymetoo (Member # 743) on :
purplemom... I would be angry too!!
Posted by JoesMom (Member # 15699) on :
My daughter's Igenex was actually negative for Lyme. That was a year ago-
but, at the urging of my son's LLMD, I put her on the same protocol as my son. He is doing the Cowden condensed. ANyway here it is just 3 months into the protocol and this girl went from having MS symptoms, walking with a cane, and being so brainfogged that half the time she didn't know where she was- to being just about herself again.... and 3/4 of the time is now pain free.
All I can say is - it's killing something; and that is the something that was killing her. I mean that, it really was. We were losing her bit by bit but now it has reversed.
She isn't totally out of the woods yet but what a significant improvement!
And that is with a negative Igenex. It isn't perfect. Nothing is when it comes to this....
Posted by Lymetoo (Member # 743) on :
Thanks for posting, JoesMom!!! So glad your kids are doing better!!
My Igenex was negative too!! Now I'm successfully treated!
Posted by mattnapa (Member # 26414) on :
I am waiting on my first test for Lyme from Igenex. I believe a part of it is the Western blot. Is this a good test. Massman I hear you, but I am concerned there is a motive for LLMD to clinically diagnose you with Lyme since they can then obtain the cost of treatment
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