Lyme Questions....igenex Positive...is This Reliable??

[badhbt]

Hi there,

I had my blood work sent to IGENEX to check for Lyme disease. I have spent so much time researching Dysautonomia/POTS that I don't know much about Lyme.

My test came back with:

Lyme IgM western blot Positive, CDC/NYS result Positive. The following bands were positive 18, 23-25,30,34,41,58,83-93

I am hoping someone could shed some light on this subject.

All I know is it my GOOGLE is going to be on FIRE

Thank you!

[Katybug]

Lyme literate docs consider Igenex tests to be the most reliable. False positives are not nearly as common as false negatives in lyme testing so it is probably accurate especially with that many bands. A great website for you to get info is ilads.org. There is a paper embedded in their website somewhere by a Dr. Buranasco (sp?). I am on my phone and don't know how to do links on here or I would link it for you. The paper explains everything from A-Z about Lyme and co-infections. It does get a little technical in places, but not so much that you can't get through it.

[Allotmenteer]

That's a lot of positive bands, looks like you definitely have Lyme, from what I understand. Suggest you see a Lyme-literate doctor ASAP. I don't rely on anything a non-LLMD tells me, and I ignore any advice from IDSA website, ILADS is the one to go with, IMO. You'll discover that Lyme is a very contraversial illness, but if you're in US there are plenty of specialists. Here in the UK we don't have any.
Still struggling with Lyme myself. Good luck.

Edited March 5, 2013 by MomtoGiuliana
medical advice

[issie]

You might want to take a look at the threads that are going on about protozoa --bunch of us are coming up positive. You might want to get checked for co-infections as well. I have a co-infection connected to Lymes (although my Lyme test was negative on the Western Blot) and have another protozoa. Looks like we are getting more people to compare notes with. It's not an easy fix and will take time, diet changes and supplements and possibly antibiotics. We are all on a new adventure, hoping that it leads to our "purple bandaid" and more quality of life.

Issie

Edited March 5, 2013 by corina
medical advice

[ramakentesh]

IGENEX were recently embroiled in a controversy regarding allegations of false positives. It might pay to do your homework.

[HopeSprings]

Were you tested elsewhere and found negative or is this the only lyme testing you've had done?

[badhbt]

Thank you for the comments.

Naomi- I was tested through lab core and was negative. This forum made me want to get a second opinion. I also saw a mystery diagnosis show about a guy with the same symptoms that tested negative 3 times and then finally tested positive. His symptoms got so bad he had to quit work. He then would go to the ER everyday until he got an answer.

I know my IGG was negative only postive for band 41, but IGM there is no doubt. I don't quite understand all of this and I am kind of like Rama.... I want clear answers. I know if I tell my primary Doctors they will think I am a fruitloop, but on the other hand what if this is the ANSWER?

I hope we all find an answer!

[HopeSprings]

I understand where you're at. Lyme fits very well for me too with a history of tick bites and the symptoms. When I first got sick, my Lyme results were labeled indeterminate, but the Dr. diagnosed it clinically and put me on antibiotics for several months - it did nothing, but cause yeast and urinary tract infections. My PCP at the time was like "you don't have Lyme disease" and pulled me off. Years later and still sick, I brought Lyme up to a new PCP. I tested CDC negative on Lab Corp. I asked him to be tested either through Igenex or Stony Brook (very reputable). He refused Igenex saying he's suspicious of them and something to the effect of... how are they getting positives when other labs don't and doesn't want to see me on a dangerous antibiotic regimine (something about port lines or picc lines? hanging out of my chest ) for an illness I don't have. Makes sense. We tested through Stony Brook and I was CDC negative again, so I dropped the idea for the time being. I would still run this by your PCP if you trust him/her and see what they say. And if you think this really fits, look into it - see if you think it makes sense to pursue. Sorry this probably didn't help, but I can just relate to the confusion!

[issie]

If it were me, I'd go to a doc that specilizes in Lyme disease and knows what to look for. Many of us are not even doing antibiotics ---many docs are just using herbals and diet to treat these days.

Issie

[HopeSprings]

I just want to add this link. I think Columbia University Lyme Research Center has very sensible things to say about the topic:

http://www.columbia-lyme.org/patients/controversies.html

[badhbt]

Naomi-- I think that article sums it up nicely. There are definitly 2 sides to this issue. I think I am going to start treatment and just see how it goes. I can always quit anytime if I don't think it is helping.

Will keep you informed!