Has anyone here tested negative for LYME

[michiganpandas]

Just curious if anyone has been tested with a lyme doctor or through the ones you order on line and ended up with a negative result?...or do most people get some kind of positive?

[beeskneesmommy]

My almost 5 year old son has been tested x 3 through the Ped and CHOP, both using std. W. Blot and typical large labs (like Quest). Most recently, we droppped the big bucks for Igenex and he tested + for Lyme and Bartonella. His PANDAS specialist, Dr. Bouboulis in CT. states that Igenex tests many more genobands than the std. Lyme test. I have done some research on the Net and most reliable articles state that the std. W. Blot is extremely faulty and has a 50% false neg. rate. Wow. Things I wish I knew a year ago that are now just being addressed.

[philamom]

My almost 5 year old son has been tested x 3 through the Ped and CHOP, both using std. W. Blot and typical large labs (like Quest). Most recently, we droppped the big bucks for Igenex and he tested + for Lyme and Bartonella. His PANDAS specialist, Dr. Bouboulis in CT. states that Igenex tests many more genobands than the std. Lyme test. I have done some research on the Net and most reliable articles state that the std. W. Blot is extremely faulty and has a 50% false neg. rate. Wow. Things I wish I knew a year ago that are now just being addressed.

beeskneesmommy- my daughter had a tick bite in spring of 2006. A week later she was complaining of pain behind both knees and I took her to the ped (not my usual one) who said there was nothing to worry about because there was no bulls eye rash. She was taking some gymnastic classes (more fun than instructional) so the doctor chalked it up to that, but she was taking them for a while with no prior complaints. A month later to the day, she had a severe sore throat and fever for three days (in July) and it was never associated with the tick bite. I only remembered this tidbit after receiving her positive western blot and going back and asking for our records of the time of the tick bite. If only she would have been put on a round of antibiotics . Eight months later is when she had her first severe PANDAS episode. That's when we learned about PANDAS, but, she also had minor panda-ish symptoms with every sinus infection she had since age 18 months that resolved with antibiotics. She had numerous chronic sinus infections growing up.

Edited August 25, 2011 by philamom

[Tamistwins]

My twins were both tested for Lyme and other tic borne illneses via igenex. My daughter tested positive doe Lyme while my son did not. His pandas symptoms are far worse than my daughters. He is still being treated by the Llmd with a clinical diagnoses of bartonella.

[vermontmoms]

My boys have been tested and both came back negative on two diff tests. That said, they have tested positive for Myco, Strep, and some others.

[beeskneesmommy]

I couldn't believe that my son tested + for Lyme w/ Igenex after 3 regular lab tests that were -, but there you have it. I have a vague remembrance of a rash at 18 months. DS is almost 5 now, but PANDAS symptoms started (in retrospect and very minor) at around 18 months when we moved to the SE. That being said, he had classic Strep:PANDAS many, many times prior to T&A last Aug. He also has Myco. Tested - last Sept. when he has his acute episode that landed is seeking help from PANDAS specialist, but then he had pneumonia last Oct. and his Myco IGG has been elevated since.

[michiganpandas]

thanks...i just wondered if EVERYONE and ANYONE who get the test they get a positive for lyme from igenex...it seems like most people do.....but, it sounds like tamistwins has one child who did not. Not trying to sound skeptical, but that does help to know that one person did not. Also, if it is such a reliable test why don't most doctors use it? Again, totally just asking...(I just ordered the kit).

[beeskneesmommy]

thanks...i just wondered if EVERYONE and ANYONE who get the test they get a positive for lyme from igenex...it seems like most people do.....but, it sounds like tamistwins has one child who did not. Not trying to sound skeptical, but that does help to know that one person did not. Also, if it is such a reliable test why don't most doctors use it? Again, totally just asking...(I just ordered the kit).

I had the same feeling of skepticism and was very forth right in asking my son's PANDAS doc (who ordered the Igenex). He stated that he has lots of patients who come back negative for Lyme as well. It does make sense if you look at articles about the CDC approved Lyme blot that is typical of regular Dr.s. It tests for only 2 genobands whereas Igenex tests for multiple genobands. Igenex clearly disclosed and explained on DS's labs that what they considered + were considered - by CDC standards. I am thinking that perhaps because my only point of reference for Igenex testing is with people on this Site, it makes sense that it feels like "everyone" has + results.

[momcap]

I was tested via IGeneX using my naturopathic doctor. He tried to talk me out of wasting my money because he had sent in so many to IGeneX and they were all negative (we are not in a typical lyme area). He didn't understand why I would pay for the test when I could get a Western Blot here covered by our health care, since he wasn't seeing any different results with IGeneX. I insisted, and when I came back positive he was shocked. He said I was the first one of his patients to be positive. Turns out I was CDC positive too, so I could have just used the regular Western blot that was covered here. But PANDAS DS7 was tested here and negative. When tested through IGeneX he was positive, and just missed the CDC criteria by 1 band. IGeneX uses a much broader criteria, and reports the bands, so you have much more information to go on.

[sf_mom]

All three of our children were negative for Lyme via Igenex antibody testing. We did not discover Lyme was our children's true issue until we did provocation and looked for the DNA match in their urine. Lyme loves the bladder and why it is 'sometimes' simple to pick up die-off in the urine. Frequent urination had been an ongoing symptom for one of our children. However, when the Lyme isn't present in the bladder the result may be falsely negative. Even though our younger son was negative for Lyme via Igenex, he was positive for co-infections of Bartonella and Babesia via antibody testing. We have since done further confirmatory testing via alternative methods through our LLMD which includes: blood smears, ART muscle testing, supportive blood work, etc. There is a variety of ways to be properly evaluated for chronic infection but unfortunately this requires the guidance of a Dr. versed in testing or treating for these infections.

 

Igenex is good first pass at testing for the presence of Lyme because it does provide a wider range of Lyme specific bands or proteins over the standard WB. However, results might only give you an indication and would still take further evaluation by an LLMD. In our case, the Igenex antibody testing gave us no indication of Lyme.

 

-Wendy

Edited August 25, 2011 by SF Mom

[tpotter]

DH who has RA is the only one in my family to have tested positive for Lyme. BUT, we all had multiple bands positive, except for DS15 who only had 1 IgG band positive. We still tried to treat him with abx, because everyone was symptomatic, but he responded poorly to oral abx (pancreatitis, and other problems.) Then, only after tx started, he finally started having some very unique problems that clearly indicated he has lyme. I didn't want to believe it, because it's so much more complicated, but I really couldn't ignore it either. We're still treating. BTW, both my DS's also have strep and several co-infections.

 

The tests for lyme and co-infections are not terribly accurate. Igenex may be slightly more accurate, but even then, it takes a good clinical diagnostician. Even then, like my DS, it took starting several months of treatment before his symptoms really started becoming clear.

 

For the record, folks, I'm not saying that everyone has Lyme. I'm just answering the question.

[SSS]

I also think you are not going to Igenex unless there is a reason: symptoms, immune system issues, regular WB that show a positive band-

I was so dead set against lyme, that only sent in a labcorp WB because I found one online, cheap, did not need a Dr. signature- got it back, positive on band 23, which is a lyme only bacteria band.

That's when we went Igenex, positive bands, went to an LLMD, our world has changed.

 

So, when I hear people think Igenex gives positives, I think, well, they are not testing totally healthy free of symptoms people, really.