Did you get your results yet? Post and let us know when you get them! Hopefully, it will give you the answers you've been looking for.
Yes, the Igenex tests are considered by Lyme specialists to be the best diagnostic tests available for Lyme, as far as I am aware. That your doc tested you by CD57 is also a good sign.
Let us know what you hear back, and in the meantime, hold fast. Best to you and yours --
I have also heard Igenex to be one of the best tests, however mine was a false negative so it's not 100%. I believe no test is 100%. My doctor also uses a test by Immunosciences Lab and Fry Laboratories which showed positive results for me.
I don't think there are many cases of lyme disease in Australia. I didn't do much research, but I do not think they have found a vector tick that can transmit the disease in your area. I am skeptical of the high rate of positive test results igenex gives out. I was reading on another site that the percentage of positive tests is around 53 percent. That is way too high. Another member mentioned that they had friends with no symptoms test positive with Igenex. I actually wanted to have my gf do a test with igenex to see if she would come back positive. I actually mentioned that it would be interesting for a news agency to send blood samples from Australia to Igenex to test their accuracy.
There was another company called Bowen Research that a lot of people considered a top lab. Why? Because they were giving out a high percentage of positive tests results. People thought they were the best lab because they found a disease that Labcorp and Quest could not. That is the problem. All a lab has to do to be considered the best is give out positive test results. If they gave out as many negatives as Labcorp and Quest, they would be out of business. They need a competitive advantage. Bowen research had law suits filed against them and ultimately changed their name or closed.
There are some really good LLMD's that will help you. There also seems to be some bad ones. I was reading about an LLMD who was sued over over-diagnosing and over-prescribing antibiotics. The doctor drew 40 vials of blood and diagnosed the senior citizen lade with 20 something diseases. This was without physically examining the lady. Some of the diagnoses could not have been made without a physical exam.
Unfortunately, there are no definitive tests for lyme disease. A lot of people with undiagnosed issues end up believing they have lyme. One of the reasons I think this happens is because there are actual blood tests for lyme and it is medically recognized by mainstream MD's. These tests are not accurate. Lyme can mimic almost all diseases (information obtained from forums). You could do two tests with Igenex. If one came back positive and one negative, people would still support their findings. You would be told that the Lyme was hiding during the negative test or that lyme can change bands. It is extremely unlikely that you have Lyme Disease, if you are from Australia and haven't traveled to a location with a high prevalence of lyme disease. Please make sure you keep an open mind and keep searching for a diagnosis. Do not just settle on the notion that you have lyme. Lyme disease needs to be clinically diagnosed.
Rung the Dr and yes he said I have lyme, but one bib of paper did not get faxed clear, so he will ring me in the morning, after he has had a good look.
But what he did have, he said yes I do have lyme..
Sorry, but I have to disagree with you.
You say: "It is extremely unlikely that you have Lyme Disease, if you are from Australia and haven't traveled to a location with a high prevalence of lyme disease." and "All a lab has to do to be considered the best is give out positive test results."
Let me turn this around on you. By your standards, all a lab has to do to be considered the best is to give out NEGATIVE test results for Lyme. If you prejudge the accuracy of a test by whether it fulfills your expectations, however, you are not following the scientific method of basing conclusions on evidence, and are instead cherry-picking the results to support your pre-conceived notion of what is 'correct'.
You assume that Lyme is rare in Australia, and therefore any test that shows a higher prevalence than 'rare' must be a phony test. That's putting the cart before the horse.
You are in good company in a fashion, however: there are lots of educated and experienced MDs and PhDs who think as you do, and they run the CDC and Infectious Disease Society of America. Unfortunately, cooking the test results to match your predetermined conclusions is not accurate and not helpful.
The scientific approach is: data first, then conclusion. The other way around leads to folly and a lot of suffering people, as we have now.
I'm glad your doc called you. He sounds like a caring person not to wait and let you twist in the wind, waiting and worrying.
I'm sorry to hear of your diagnosis, but it is the first step toward getting well.
Best wishes, and let us know how you do, okay?
Regarding your comments on Igenex, I was just thinking the other day that I have been reading about a lot of people that are testing negative at Igenex....so it's not true that everyone tests positive.....
And just a further note on Igenex tests: they are different in structure from the Western blot/ELISA tests used by most docs.
Western blot/ELISA, to my understanding, look in your blood for antibodies your immune system makes against the Lyme bacteria. A while after infection with Lyme, your immune system gives up fighting, partly because the Lyme bacteria go into hiding in your body in slimy shields they make for themselves, called biofilms. The immune system can't see through the biofilm, and so assumes the bugs are all dead and gone. Therefore: negative test result.
The Igenex test instead looks in your blood for bits and pieces of the actual Lyme bacteria/DNA, that is, direct evidence of the infection. It's a whole different approach.
A Lyme doc will sometimes give a short course of antibiotics to stir up the Lyme bacteria in your body, which will sometimes then give a positive result where it didn't before. That's why the tests are NOT the last word in diagnosis of Lyme.
If 53% of the people tested for Disease X actually have Disease X, and if the tests for Disease X come back showing 53% of those people tested are positive, how can you say that 53% is 'too high'? Diagnosis of Lyme is clinical, based on history and symptoms, and aided by testing. Testing is not perfect. Your conclusion is unsupported by logic.
It's clear you think Lyme is overdiagnosed; others of us have concluded that it is underdiagnosed. You are entitled to your opinion, and we to ours. My objection is to people like you who try to keep people like me from being treated. If you don't want treatment, don't take it, but don't tell me what to do.
You have assumed that ELISA/W. blot tests are always correct and therefore the higher positive rate on IGeneX tests must ipso facto be incorrect. You have based your conclusion on a faulty premise, therefore your conclusion is invalid. You are entitled to your opinion, but I hope you will rethink your position, because it is that kind of thinking that has left many people very ill with Lyme and its co-infections to wander the world without treatment. That is inhumane and wrong. If you don't want treatment for your illness, that's fine, but kindly don't tell the rest of us to lump it because you say so.
Yes, ELISA and W. blot are different tests: they are paired because one of them has a high rate of false positives and the other a high rate of false negatives. What is your point?
Your statements like "the percentage of positive results were too high" on IgeneX tests. That would be true only if the ELISA/W. blot tests were infallible and therefore the gold standard. They are not. Therefore 'too high' is a phrase without meaning.
You are entitled to believe that patients diagnosed by PCR and upon clinical exam and history should not take "aggressive measures" against their ailment, but please don't tell other people they are not entitled to make their own decisions. You may have concluded that 'aggressive measures ... have not been proven to be beneficial', but you would be wrong. I am living proof, as are others here.
I suspect you mean well, but your arguments are faulty.
Please keep in mind that only people that are ill with symptoms of lyme disease are going to go to Igenex for testing. Healthy people who have no reason to suspect lyme disease would go to Igenex for testing...why would they.... It is far too expensive for anyone at random just to order the test and be tested for the heck of it.
I am actually surprised that only 53% do come positive to be honest!