another set of IgeneX results

[Marie]

I guess it's the season for IgeneX test results!

 

I just had tests for borrelia burgdorferi.  I will only note the bands that came back positive or indeterminate:

 

IGM:

 

**31:   indeterminate

**39:   +

**41:   indeterminate

 

IGG:

 

**31:   indeterminate

**41:   ++

 

Everything else was negative.  I have a lot of Lymish symptoms, though.

 

Marie

[Parisa]

Marie,

I'm working from memory here but some people don't mount an antibody response.  However, once they start to treat with antibiotics further down the line the antibody tests will then come back positive.  Remember a negative Western Blot doesn't mean you don't have Lyme, it just means you didn't test positive.

From your progress thread, it sounds like you need to find a different doctor.

[Maz]

Hi Marie,

Were you able to read the link that Tainabell posted on PonyTails's thread? It is a pretty thorough explanation of the various bands and also why Lyme is a clinical dx. Tests are just an added bonus, if they're positive, but as Parisa says, “some people don't mount an antibody response” sometimes for years.

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077

A worthwhile read is that of “Cure Unknown – Behind the Lyme Epidemic.” It's a very good read in layman's terminology and is now considered the current, “Lyme bible.” You'll get a Lyme 101 by reading that. Pam is the senior medical editor of Discover magazine and she and her whole family were struck down by Lyme….if memory serves, only one family member tested positive initially for Lyme. She, herself, didn't test positive for a couple years!

This is why although IGeneX has this “cut-off” point of two double starred bands for a positive, essentially most LLMDs consider any band positive to be indicative of exposure and safer to treat than not to treat.

“Indeterminate” bascially means the test is picking up some antibody but just not quite enough for a definitive result….you have a few of those…and you're also testing positive on two highly specific (double-starred) bands.

This coupled with your “Lyme-ish” symptoms is enough for any LLMD worth his/her salt to give you a positive dx for Lyme. The crazy thing about Lyme is that it drives us all crazy looking for answers. Trouble is, there are no definitive answers…only about 50% of people test positive by CDC criteria (some believe it to be more like 30 to 50%!). We get our tests done, hoping for an answer, but the net result is that those people who don't get a definitive result have to just make a decision about whether they might have Lyme or not based on possible past tick exposures (which may have occured decades ago), whether we live in or have visited Lyme endemic regions (all 50 states have reported cases of Lyme!) and whether our symptoms present like Lyme (it mimics just about everything!).

So, the decision is really in our own hands…do we see an LLMD or not? All I can tell you is that I haven't regretted my decision to see my Lyme doc. I did test IGeneX positive on two double-starred bands and some indeterminates on one or two others…but this test was done when I was still in the unsure stage and after I went to the LLMD (I had already tested equivocal on standard CDC tests). I was so unsure of what I was doing in the beginning. All I can say is that my doc listened to my litany of symptoms, saw my clinical signs and started treatment right away…before the IGeneX labs even came back. He didn't need to see the results to know I had Lyme and he said, even if they had come back negative, it was clear I had Lyme.

I know this is hard, but with some evidence of exposure to borreliosis on your labs, now might be the time to really look seriously at all the literature you can get your hands on…maybe even join a Lyme discussion group and ask their opinion…then based on what you've gathered, you'll feel more empowered to make a really informed decision about what course you feel comfortable taking.

Wishing you all the very best!

Peace, Maz

[Maz]

PS Marie, if you go to this link and scroll to the third video from the bottom, you'll find my LLMD, Dr S.P. speaking at a conference in Hartford a few years ago. Within the first few sentences, he talks about the fact that some people test negative for Lyme and still have it:

http://www.ctlymedisease.org/videoclips.htm

There are some other good Lyme videos on this page, too, from other LLMDs and researchers in the field.

Peace, Maz

[Kim]

Hey Marie and Ponytails,

Just a side note in addition to the information Maz provided — your tests are almost identical to my sister's numbers and bands.  Based on her test results and Fibro/CFS symptoms over the last ten years, I asked her to see a Lyme specialist.  She did, he said she's been infected, and is treating her for Lyme.  She used to live in Pennsylvania and would go hiking in the woods with her husband, so probably where her nightmare began.

People really shouldn't feel safe if they haven't been to the endemic areas.  All of my many tick bites came from right here in my own back yard in Indiana ……… where “we don't have Lyme.” :headbang::headbang::headbang:

It's hard not to let the insanity associated with Lyme make you crazy, so try and muddle through as best you can, but by all means, find an experienced LLMD.

[Marie]

Thanks, everyone.  I'm not thrilled about being cast into serological neverland (at least for now), but I was prepared for the possibility, so at least I'm not feeling devastated!  🙂  I also didn't test for any coinfections.  I found a symptomatic person on a lyme board who had results similar to mine, and they said he should get to an LLMD.  Sounds like that happens to a lot of people…Kim's sister, Weintraub, Dr. V.S.  I'm going to go the LLMD route.  I'm open to the possibility of it being a dead end (although I doubt it), but letting this thing go uninvestigated would be the worst possible option. 

Thanks again-

Marie

[Author]

Posts