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!
Good point, Carrie! I sure never heard of IGeneX before I ended up sick and my regular docs were clueless.
Do you have a Lyme disease diagnosis? Did you use IgeneX? I didn't see that mentioned in your posts and was just curious.
Thanks everyone for your comments
I have spoken to my Dr again today and he still hasn't received the one bit of paper, but will get onto igenex again today.
He also said again, that I do have lyme, and he is going to get onto a collegue near me to treat me via himself.
This Dr has gone out of his way to help me, and he does have proof that lyme does exist here, he has a website and they have taken samples off ticks in certain parts of australia that do contain lyme.
One area in particular is where I used to holiday all the time as a child....
Will let you all know how I get on Monday.
Thanks for all your help again!!!!
Again, your post is extremely confusing. Please go back and read my posts. You are making false accusations in regards to my intentions. My point is to NOT exclude other health related issues. What if the OP has another health issue and is a false positive? What if she has Celiac disease? She would go without treatment for years. Moreover, she would be subjected to long term antibiotics that would have no benefit.
Your logic is the one that needs to be called into question. Fifty three percent is too high because no other disease in the world tests that high. It would be highly unlikely to have that many positives. Look at old posts when Bowen research was considered the best. They were considered the best because of THEIR HIGH PERCENTAGE OF POSITIVE TEST RESULTS. When the were sued for giving false positives, they closed or changed their name. I would have thought that the Lyme community would have been outraged. This did not happen. Like I said before, a lot of people with Lyme want to have it for some reason. It is an answer to their chronic symptoms. If Igenex is found to have unreliable tests, there will always be people like you saying it is a conspiracy. That there is no way they were profiting off of sick people.
I think the high number of positives can be attributed to a few different things. First, Igenex tests for more bands. This greatly increases the chance of a positive just based on numbers. People count the number of bands that come back positive. On top of that, LLMD's tend to diagnose Lyme with less bands. This combined with more bands greatly increases the probability of a positive diagnosis.
I noticed you did not answer any of my questions. How are people getting Lyme disease in Australia? What is the vector? That is my point. The probability of a person from Australia contracting Lyme is very small, if it is even possible. She would probably make news as one of the first people in Australia to have it. If she found a vector tick carrying the bacteria, it would make news in Australia. That is how unlikely it is that she has Lyme. I'm going to repeat my point again. The OP should not dismiss potential health issues that could be causing her symptoms. I NEVER said she should not pursue treatment for Lyme. I just feel like it is highly unlikely she has it. Therefore, she should keep an open mind to other diseases.
That is the typical rebuttal for Igenex. There are a lot of people that are convinced they have HIV, hepatitis, celiac, STD's, etc. The number of positive results comes no where close to 53 percent. Fifty three percent is ridiculously high. Go to other forums on this board, and you will see many posts where people are convinced of a disease.
I forgot to mention that a person with Lyme sent a couple of friends blood samples to Igenex. The friends were completely healthy. Guess what??? They both came back positive. This was discussed on another board.
No, I did not test through Igenex. I have been doing a lot of research, and I feel that they are not reliable. I did, however, test negative through Quest Diagnostics. The OP actually made me make up my mind not to use Igenex. Please do research on Lyme disease and its prevalence in Australia. It does not exist. The fact that she tested positive is disturbing. I actually mentioned on another board that it would be interesting if Dateline submitted blood from Australian residents to Igenex or another area where Lyme doesn't exist. You can read other posts where members tell people from Australia to get tested for Lyme, and the person tells them that Lyme does not exist in Australia. They then keep searching for what is wrong with them. The OP may very well have Lyme. My point is that she should keep an open mind due to the low probability of contracting Lyme in her area.
Lyme does exist in Australia. It is not just a "tick" it is sexually transmittable as well. Mycoplasma Fermentans-Incognitus is often an overlooked co-indfection in morbidity along with bartonella, Babesia, Brucella, Rickesettia, Ehrlichia, etc.
LOL, Quest.......LOL, Labcorp....they only test for 1 type of Borrelia, where over 200 are known to exist. They also only look for antibodies, which as we all know are suppressed by the immune system. This is a chronic INTRACELLULAR bacterial infection that cloaks itself from being picked up by the immune system. Dr Lida Mattman, PHD Yale, Nobel Prize nominee, Immunologist, Virologist verified over and over again. The goverment has tried to shut down labs that use the Bowen Q Ribb test criteria over and over, but in double blind controlled tests, it has never failed. NEVER. Hence, they can't be shut down.
As far as your logic is concerned, if I was a one legged man going to an *** kicking convention, I would expect to see alot of one legged men going there. The tests results are so high because these individuals have been everywhere else taking a test that shows nothing, because the criteria is WRONG. Take a test that looks for the proper DNA genetic sequence, and it will show pos in people that are ill with this. Think Mycoplasma chronic infection
YOU need to go to the STD, Autoimmune, MS, Lupus, CFS forums and see ALL the people that are being missdiagnosed with all their tests being neg or borderline with ALL the classic Lyme symptoms. I am beginning to think your name should be Gary Wormser as opposed to Navy Guitar.
Unfortunately, you are a believer of anecdotal evidence. There is always a rebuttal to why someone has Lyme. Now, it is transmittable as an STD. Where is this data in the US? I need data from reputable doctors that do not have an interest in Lyme. A lot of people, including yourself, think Lyme is some huge conspiracy. The government is trying to infect people with Lyme, etc. If you told this to any normal rational/logical person, they would laugh in your face. Why did Bowen Research close/ change their name? Labs like Igenex and LLMD's have a huge incentive to spread the word that Lyme is an epidemic. Igenex will be out of business when a definitive test is created. Unfortunately, people like you will still not believe in this test. You will make comments like the Lyme is hiding somewhere in the body. That the Lyme bacteria know when you are being tested, so they will not be in the arms. It will never end.
Igenex doesn't just check for Lyme out of the kindness of their hearts. They are making huge profits. Why do you think they do not accept insurance. They charge people a cash rate. Have you ever looked at an insurance bill? I was tested for Celiacs. The lab wanted $280 for this test, but the insurance company only paid them around $50. They are still able to make a profit from the insurance companies reduced rates. Igenex charges the full amount on a cash basis. They do not have to file insurance claims. It works the same for doctors. They only get paid a fraction of what they bill for. An LLMD will get the full amount. This leaves a huge incentive for unethical people to take advantage of sick people.
I'm not saying that Igenex or LLMD's are all bad. I'm just stating that there is a huge incentive for these individuals to over diagnose Lyme. They are not doing their services for free, nor are they doing them out of the kindness of their hearts. They are making a lot of money from Lyme patients. That is why I say to keep an open mind. That is my only contention. Before you spend your families life savings on Lyme treatment, you should exhaust all other causes of your illness.
It doesn't make much sense that some LLMDs are in it to profit off of sick people when they risk the chance of losing their license for treating people. It would seem silly to me. I think LLMDs have to be heroic to put their license on the line to treat this disease. I highly doubt the main reason they practice Lyme is for the profit. I know my LLMD screens people extremely carefully before treating patients. I know three LLMDs that got in to treating the disease because they have Lyme or one of their family members have it, not for the profit. I just felt I needed to point this out. Thank God for LLMDs!!
Why would healthy people be tested at Igenex and spend that kind of money?
I personally believe that many people are infected with lyme and just do not know it. I for example was bitten by a tick when I was around 13. My immune system was most likely keeping the infection in check. However, not until I had major surgery, was my immune system unable to combat the lyme bacteria which is why my symptoms came on overnight.
Many people could in-fact have Lyme but are not having symptoms because their immune systems are strong enought to fight it.... That's my take on all this.