Anyone negative on IGeneX testing?

Hello! I’m posting here today because I’m wondering if anyone came back negative on the iGeneX testing and later found out they did have lyme? I came down with the telltale flu symptoms in January of 2018 after being a healthy athlete for 27 years. Extreme weakness and dizziness and headaches I couldn’t kick. They diagnosed me with the flu, but after 3 weeks I didn’t get better. Then I came down with the air hunger. I had a stressful job at the time, and started having panic attacks because I felt like I couldn’t get enough air. I went to at least 10 different specialist and made 2 ER visits where no one could help me. In December of 2018 I was diagnosed with lyme by a naturopath. I started feeling better from the supplements, and then began a new job with better air quality and less stress. I started feeling exponentially better, but still had a lot of bad days where I felt like my body was poisoning me. I started increasing my detox methods, and always felt better. The difficulty breathing has improved, but is still pretty terrible. I am on 75mg of meclizine just to function with the dizziness, and the stiff neck and headaches make me unable to play sports most of the time. I’ve also developed arthritis in my knee which the ortho can’t explain at my age and activity level. I still have a lot of chest pain and am suffering neuro symptoms like mixing up words and forgetting to do things I’ve done for years. Anyway, I got the iGeneX testing back and the doc said it came back negative for everything. I still believe I have lyme but I know the odds aren’t great at a 7% chance. Has this happened to anyone?

Sounds like you may have CIRS from exposure to mold and/or water damaged buildings. You don’t have to have Lyme to have CIRS. The symptoms are very similar.

You mentioned starting a new job “with better air quality.” Were you previously working in a water damaged building or a building with a lot of chemical exposures?

My Igenex test was reported as negative. I did have 4 positive IGG bands. CDC surveillance case counts require 5 bands to be positive to be counted...

That being said. If one has absolutely no bands come back positive, I think it is somewhat unlikely they are dealing with a longstanding Borrelia Borgderferi infection.

There are several other strains of Borrelia that might not be detected on a Borellia Burgdorferi test.

Tick borne infections like Babesia, Bartonella, and Ehrlichia will not light up an Igenex Lyme Western Blot. You might also be wise to read into Myalgic Encephalomyelitis. I am not 100% sure what infections are implicated there.

Find a doctor that will help you turn over the stones to figure it out, if you don't have one already. Preferably ILADS trained I should think.

Missouri: I had one positive IGG band that showed up on the testing done through Quest, but I haven’t seen the iGeneX testing results. I called to request them per your suggestion. Babesia has always been my main concern because the symptom that really won’t resolve is the difficulty breathing

Definitely keep digging. There are many reasons why Lyme and tick-borne illness testing is considered unreliable and complicated.

Mold toxicity illness is not an allergy, so an allergist would not be able to help. There are urine tests from Great Plains Lab that you can order to see which kinds of mycotoxins are being processed in your body and in which amounts ($300). You also can do a dust test in your home through Mycometrics, as mold growth often is well-hidden and has no smell. There are many blood tests that can indicate mold illness available through LabCorp, usually covered by insurance: https://www.survivingmold.com/diagnosis/lab-tests Also the VCS test which is a visual test you do at home by computer, also at survivingmold.com ($15). Mycotoxin illness (possibly along with MARCoNS) is associated with all the symptoms you mentioned. This is not to say that infections aren't involved, just that multiple factors could be at play. Lyme and other tick-borne illnesses can predispose people to CIRS, so it could be something that developed for you over time.

Even with IGeneX testing, most LLMDs consider Lyme to be a clinical diagnosis - based on signs and symptoms, not just serological tests.

I got my testing through MDL labs in New Jersey. It was relatively inexpensive I think the Western Blot, Bartonella and Babesia test was $55 all together insurance negotiated rate. It came back back positive on 8-10 bands. It was so lit up I was proud!! (well not really) But when I got tested through Quest only one band was positive although it was a Lyme specific band. I would look into MDL labs before going with Quest or Labcorp.,

IGeneX is a good lab, inasmuch as blood tests for Lyme and co-infections can be good. Just make sure to ask your doctor or call IGeneX and ask which infections were tested for. Make sure they're not saying your result was negative just because it was "CDC negative," although I would hope an ILADS LLMD would not make that mistake. You should have been tested for multiple strains of borrelia, babesia, and bartonella, and to be safe probably also ehrlichia, mycoplasma strains, rickettsia strains, and various viruses like HHV-6 and Epstein-Barr. All of those can be part of what constitutes chronic tick-borne disease. The LabCorp tests can be useful but often produce false negatives. A PCR test like DNA ConneXions is also an option, and for me was the most helpful. There are threads on this forum if you search, debating the usefulness of various tests.

The list of LabCorp tests I linked to before can be helpful to indicate mold illness or Lyme illness, but they do so not by looking for the mycotoxin or infection responsible, but rather the changes in a body suffering from those things. Like for example, the c4a test looks for an inflammatory marker (c4a) that goes very high with Lyme and sky-high with mold, so it doesn't tell you which one you have, but it can tell you that you probably have one of those things, and can help measure progress when you are in treatment. CD57 is the number of natural killer cells a body's immune system is working with, and if your result is lower than 60, then it means you have a depressed immune system common with chronic Lyme. VEGF is a polypeptide that helps you grow blood vessels, which is high in people who are pregnant, or who have tumors or bartonella, but VEGF is low in people who are dealing with CIRS and mold exposure. Nice stuff to know.

I love having more information about my body from testing, but its value can be limited, and of course testing is only one part of a much larger picture.

Thanks so much for the suggestions!! Saraeli I had originally missed that post linking the tests and it’s incredibly helpful, so I’m glad you pointed it out again! It is also nice that something may finally be coverable by insurance haha I am going to look into getting the testing done local (I’m in CT) and see if my pcp is willing to send me for those tests since none of the docs on the surviving mold website are located in my state. Fingers crossed! I will also look into the MDL labs mentioned, thank you!!

Ok great thank you skinny_joe! I will look into ordering a kit and see if my doc will sign off on it. Also sareli I did take the visual test online and I came back that I got 65 out of 90 correct, so 72% which shows a likelihood of having an underlying condition