Is igenex testing reliable or not, there are so many different opinions, I can’t find real information
Igenex testing is not reliable in diagnosing Lyme disease. The Western Blot and ELISA tests are the ONLY labs that should be used for diagnosis. If a provider recommends IGenex testing, RUN.
The labs may be accurate, and still not be reliable in diagnosing Lyme disease.
Jerry said:
Hello again.
I see what you mean about the confusion with Ingenex test. I am not an expert and can not say I have been reading reliable info. But what I have seen is CDC had problems with Ingenex test in early 2000s.
I do not know if this is still true. Ingenex test is still considered very reliable. 97% accuracy while CD57 is 55%. And that is why many people have problem with it. Because they do not believe it can be that accurate. But again it is still a recommended test. Just a lot of argument between labs. I wish I could be more help but still fumbling thru it all myself…
I agree with Grumpy. Igenex is highly problematic and has probably resulted in a lot of people receiving long term antibiotic treatment who never had lyme but who may have other conditions that go undiagnosed.
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I had some positive bands on the IGM and the IGG but my overall results said negative, my naturopath called the a igenex doctor and she said it was negative but I should do a urine test. I can’t afford another test!! I already gave them over a 1000.00$ . I don’t know what to think anymore. I was having symptoms of fibro for over 2 years now , my friend convinced me to get a Lyme test and now I’m more confused then ever.
Unless you tested positive for Lyme through either the Western Blot or ELISA tests, you do not have Lyme disease. The IGeneX testing is not an accurate indicator of Lyme disease…never has been, which is why you have had to seek care out of pocket. I would seek care for the fibromyalgia, as that is what you were diagnosed with by a real doctor. Run from any provider that offers Lyme diagnosis and treatment based on an igenex test.
Maggie999 said:
I had some positive bands on the IGM and the IGG but my overall results said negative, my naturopath called the a igenex doctor and she said it was negative but I should do a urine test. I can’t afford another test!! I already gave them over a 1000.00$ . I don’t know what to think anymore. I was having symptoms of fibro for over 2 years now , my friend convinced me to get a Lyme test and now I’m more confused then ever.
GrumpyCat, I thought that the igenex was a western blot? So confused. What is the IGM and IGG.
Igg and Igm are immunoglobin. They are not specific to lyme. western blot is a tecnique.
Tj1, why does it say Igenex western blot IGM and IGG?? Sorry for all the questions
They are testing immunoglobin just as the traditional "western blot" does (its a sorting technique) specific "antibodies attach to different proteins. Igenex has decided that some antibodies are indicative if lyme that no one else does. They don't have the evidence and no one else has been able to confirm their theory(s) either.
Our immunoglobin contains antibodies for every bug, virus, etc that we have ever been exposed to or our mothers, or our grandmothers. Most of them are not diseases we have ever had. Our immune system fights of millions/billions of intruders every day. Many if not most of these antibodies are not disease specific. But through research we find some connections. The science is called immunology. Sometimes we get really lucky most time we don't. WE were able to stop ebola, there actually exists vaccines for lyme, (politics and the vaxers stopped them) and immunology controls HIV. It certainly is no where as simple as IGENEX makes it out to be. The additional bands they use for lyme have never been directly correlated to ACTIVE disease. In fact they market their test as "experimental" and leave the interpretation up to the quacks that use it.
Here is an explanation of the procedure: (its been around for many many years)
Okay, so now I'm getting even more worried and confused. If my doctor is a "quack" I need to know before I go on his detoxing (herxing) because I know I will get sicker and now I think it might just be how he makes people think it's working. I had the Western Blot Lyme test from Quest and tested reactive to Band 23. The test itself says I needed more than one band to have Lyme, but the doctor says band 23 is specific and so it's either there or it's not. I asked if I should retest in case it was a false positive. I didn't get a good answer to that question. HOWEVER, I do believe his diagnosis that I have mold toxicity as I KNOW there is mold at my workplace and I have had trouble with mold throughout my life, including a bout with asthma due to black mold in an apartment in 2002. I know my immune system is crashed, I have stress, and I'm 46 and have hormonal stuff going on. This lyme connection is what is confusing and then the testing for all these various co infections. My CD57 test was low.........he says that shows my immune system is down. I have no vitamin D or testosterone. I believe all that. And my biotoxin c4a test was high.....15,064 which from what I read says I'm fighting something, probably the mold. Other people have quit the job due to mold affecting them. So those things I KNOW. What has thrown me is this lyme thing and then being afraid of parasites and bacteria...........we all have bacteria! I am VERY sick with odd symptoms and when I read the lyme symptoms they do fit. But I do not know of ANY tick bite. The doctor says I probably had it for 20 years. Can you PLEASE guide me if I'm being led down a bad path or if the blood test is definitive. Also, you and GrumpyCat say to beware the Lyme Literate doctors, but others on this support group support what I have read. Are all the books about lyme, etc. not true? What supports your opinions? I'm just trying to get educated so I make good choices. This all so new to me.
I understand your frustration. I myself have done a lot of research and can not find anything definitive. It’s all very confusing. Let me know if you find some answers.i hope someone else can help you with this question, if you don’t get any replies start a new post
The "Lyme Literate Doctors" haven't made any of them well. If in fact you read the stories, most of them are sicker.andmoving to the next treatment (so long as their credit cards aren't maxed yet) medical books real medical books that are peer reviewed are not sold by non scientists or on Amazon. I call it the OZ effect. Finally his peers have had enough, removed hi and censured him and yet he keeps blithering on. There is not one honest goodness study done in an academic center that supports any of it. There is a conspiracy but its not the world wide scientific community.
That is not denying you or any here are not sick. Some may actually have had lyme disease (I did and frankly it was worse than the Hong Kong Flu. All of that aside One think almost everyone has in common is a damaged immune system. What damaged it is irrelevant. There may be evidence left behind (antibodies) but that evidence is neither the damage nor the illness. If I throw a rock through the living room window, and bust it, Throwing the rock back through it doesn't fix it..... If eliminate the rock laying on the floor and all the broken pieces of glass, The window IS still broken.
The broken window needs fixed. What needs done is symptoms need treatment. Not the rock taken out of the living room
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What is so frustrating is that there is a huge popuation profiting on people who are just trying to get good information. You all want to be looking at sites that support the conventional diagnosis and treatment of Lyme disease and RUN from all the resst. That "herx" reaction that your alternative "medicine doctor" wants you to have is actually your body reacting to an overdose of antibiotics. They want to poison you. The only medicine that should make you feel worsse before making you better is chemo.
Everyone has to remember that just because it's published, does not make it true. Just because it's written by a supposed doctor, does not mean that they are still a respected member of the mmedical community.
I find this very interesting… Part of me agrees with you, GrumpyCat. The part that has been suffering for the past year (when I’ve been blessed to never really have suffered before 
and diagnosed with neurological Lyme does not. My diagnoses were made on some postiive bands on both of the Igenix tests, a brain MRI showing one area of FLAIR, and clinical symptoms. I don’t know who to listen to or believe anymore. Normally, I tap right into my gut and move forward. Something is clearly wrong with my brain, however. As a professor, this really sucks. I haven’t been able to work in any meaningful way in the year.
I feel taken and cannot believe that people who are so vulnerable and now without money, have to keep dishing out money in a desperate attempt to feel well again. This must change.
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Lyme is a clinical diagnosis and should not be based solely on lab results. We all know that Lyme causes immune system dysfunction. So, how can you rely on antibodies alone for a diagnosis? Also, WB and ELISA do not tell you if you have a current or past infection. The two-tiered testing is SEVERELY flawed. A negative Lyme test does NOT mean you do not have Lyme.
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The herx reaction I feel is the same when off antibiotics as when I am on antibiotics. The herx is ACTUALLY worse when I’m off antibiotics. If I stop my treatment at all, I begin to feel much, much worse. The ones who are profiting are the doctors, pharmaceutical companies and the labs - I spent THOUSANDS of dollars over YEARS with my conventional doctor and never, ever felt any better. Within two weeks of seeing my naturopath LLMD, I felt better than I had in years. She actually addressed my body’s NEEDS instead of covering them up with prescription pills. My naturopath wants to poison me? lol. She’s actually doing the opposite, by helping me kill bacteria, flush it out and nurture my body. My PCP diagnosed me with things like CFS and fibro - those are NOT a diagnosis. They are a symptom of a much bigger problem that she was not willing to address or help me overcome!
I hope you have found some help since 2015! People are skeptical of LLMDs because they use alternative medicine. We are all taught to trust doctors and if the docs say to beware of naturopaths, we are supposed to believe them. Well, I never felt any better with my PCP. Within two weeks of seeing a LLMD, I felt SO MUCH BETTER. I am finally treating Lyme, detoxing with herbals, using the right supplements and building up my immune system. I don’t know why people are going around trying to scare us. There is nothing wrong with natural medicine. My doc uses both western and eastern. They BOTH have benefits. Good luck to you!
Rebecca, Welcome to the Lyme Disease community. One of the things that you will notice here is that the focus of this community – and all Ben’s Friends communities – is conventional medicine and evidence-based treatments. It’s wonderful that you’ve experienced improvement from the treatments you’ve received from your naturopath, but we regard such treatments as complementary therapy, and we will routinely caution our members that such therapies are in addition to conventional medicine, not a replacement for it. There are other communities and forums who take a different approach, but this is ours.
I’m wondering if I could ask you, please, to introduce yourself to your fellow members by adding a summary of your Lyme experience to your profile so that people will have an idea of what you’ve gone through. (I’m sure everyone here will wholeheartedly agree with your comment that Lyme Disease sucks, but that doesn’t tell much about you.) Having new members share a bit about their disease history makes it easier for other members to relate, and it contributes to an atmosphere of openness. The way to add to your profile is this:
- Click on your avatar near the top right of the page.
- Click on the gear icon
- Select “profile” from the list on the left
- Make your additions and changes
- Scroll to the bottom and save your changes.
Thanks for completing your profile as soon as possible!
Seenie from Moderator Support
The most common diagnostic tests for Lyme disease are the ELISA and the Western blot. The CDC recommends that the ELISA is ordered first, and this is considered a form of epidemiological screening. Then, to confirm Lyme disease, a Western blot is run. In theory, this sounds great but, in reality, both tests are measuring the patient’s antibody response to the infection, not the infection itself. That may work for other diseases such as HIV, but not so well with Lyme. In the beginning stage of the Lyme infection (the crucial stage to diagnose), most people have not yet developed the antibody response that the test measures. The organism may not even be in the bloodstream . Lyme bacteria is known for for its stealth activity, and likes to hide and trick the immune system. So with all the hiding from, and hijacking of, the immune system measuring the patient’s antibody response to the infection seems to be one of the reasons why there are so many negative test results. The ELISA being the first test ordered and considered a form of screening is in my opinion unreliable. The test has a 65% sensitivity, and that is unacceptable as the first step of a two-step screening protocol. By definition, a screening test should have at least a 95% sensitivity. The ELISA test was designed as a surveillance monitoring tool for the CDC to track the number of Lyme disease cases throughout the country. It was not meant to be used in making a diagnosis. Many doctors have dismissed the possibility of Lyme disease when their patients have a negative ELISA result and choose not to perform the Western blot.
The Western blot is the second test ordered to confirm the ELISA screening test. If the patient has an antibody to a specific protein, a “band” will form at a particular place on the Western blot. If the blot has bands in the right places, and the right number of bands, then the test is positive for Lyme. The problem I see with this test not being accurate is that the CDC removed two vital bands, 31-OspA and 34-OspB from this test. These two bands are highly specific bands for diagnosing Lyme. With the bands removed, this makes an accurate diagnosis extremely difficult. OspA and OspB proteins of Borrelia burgdorferi, are considered to be among the most species-specific proteins of the organism, and yet they have been removed. Igenex automatically reports all bands.