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Avatar universal

Igenex test: Band 41

I received my Igenex results from my #188 and #189 test. At the top of the band list it reads:
Igenex-IGG-result: NEGATIVE
CDC/NYS-result: NEGATIVE
My GP told me I don't have Lyme, however when a Lyme patient that I correspond with asked me about the "bands" and plus signs I mentioned that 41kDa is + (just one plus sign). She said that is indicative of Lyme and that I should be pursing that especially since I'm exhibiting peripheral neuropathy and other significant Lyme symptoms.
Can anyone please explain the significance of band 41 and why, if it's significant, Igenex puts NEGATIVE.
I also have IND on band 31 (both IGM and IGG) and IND 31kDa on IGM.
Thanks in advance for your assistance!
10 Responses
Avatar universal
A Lyme specialist will read the whole report, not just one data point, so I wouldn't worry about how many + signs a line has.  A weak positive is still a positive.  You say it was your GP that told you you don't have Lyme, but if you take that test to a Lyme specialist, you may get a different answer.

Docs who don't really understand Lyme will often react as your GP did, and that's too bad, but don't let it get in your way of making sure you are properly diagnosed and treated.  

These tests aren't like pregnancy tests with a definitive + or - marker --- it takes a wise doc to look at the whole picture.  The Lyme doc may want to re-run the test, or give you a trial of antibiotics to see what results, I dunno.  But if I had any indication of Lyme, I would definitely follow up on it:  the risks of ignoring it are just too high.  Lyme won't go away by itself, and it's not a trivial infection.

And remember:  IGeneX has never met you or heard your history and symptom array.  They are just looking at the test results.  Test results have to be read in conjunction with your presentation of symptoms and your history, which takes a real, live, LLMD.  Spend the money; you won't be sorry.  It's what I would do, without hesitation.

Good luck, and let us know what you do and how it goes, okay?  Take care!
1763947 tn?1334058919
Jackie said it all. An LLMD would look at your symptoms plus the positive band.

Just as an FYI, the first year I tested, I was CDC negative. The second year I came out CDC positive. Sometimes it varies depending on when you take the test.
Avatar universal
Thanks for your responses and assistance! I've been doing some reading/research on Band 41 and came across this:

"Early studies, with Allen Steere as a co-author, showed that the 41 band was the band that was most prevalent and showed up earliest in the course of Lyme infection.
The CDC considers it specific. It is one of only 3 IgM bands tested in their surveillance test. IgeneX considers it specific, it is marked with a double asterisk. I have reviewed the literature."

So even though the 41 band reacts to a flagellum protein of Borrelia, the Lyme spirochete, it also can react with a certain number of other spirochetes. I guess that is why Igenex can't put a positive result on a test that shows + for band 41. I guess that further testing is required to narrow it down to the Borrelia spirochete (vs. leptospirosis, rat bite fever and relapsing fever).

Does that make sense?
Avatar universal
There is a lot of back-and-forth and backstabbing that has gone on in Lyme research, diagnosis and treatment, so keep a seed of doubt in your mind as you read through things.  If you search 'allen steere lyme disease controversy', you will begin to sense the swamp that Lyme research and treatment has been and (but for ILADS) continues to be in large measure.

Politics and personal fame have driven a fair portion of the positions taken by the IDSA (Infectious Disease Society of America), and those positions continue to bedevil diagnosis and treatment of Lyme to this day.  

It's not clear who the quoted paragraph in your post is referring to, but keep your BS meter on 'high' while wading through all that.  

A book I (and others here) highly recommend is 'Cure Unknown: Inside the Lyme Epidemic,' by Pamela Weintraub.  The title is intentionally misleading in some ways, in that the 'cure' that is 'unknown' is how to get the IDSA to do some pure, unbiased research and analysis that is not driven by politics and ambition.  Weintraub is a trained journalist, and her family has dealt with Lyme, so she has the credentials to speak.  

The book sounds dull, but it is a real page-turner, esp for those of us who struggled to get a proper diagnosis (took me 20 MDs before one ran a Lyme test, and that doc gently assured me, "Oh, you can't possibly have Lyme; I have patients with Lyme, and they are are all ... near death."  Wrong, wrong, wrong!  You stay miserable, get worse or die if you're not TREATED!  Duh!  

I have a lifelong friend who had Lyme, so when I heard that magic word from the doc, I knew to start battling it, not just give up and obey the dictates of ignorant IDSA docs that after a few weeks of doxycycline, any continued symptoms are the immune system overreacting, not the persistence of Lyme.

I took my positive test results and went straight to an LLMD, was diagnosed with Lyme and babesia, and months of antibiotics later, was pronounced cured ... now more than 5 years ago.

About testing:  IGeneX is the lab of choice for many LLMDs and has taken its lumps for differing from the IDSA pronouncements.  Many reputations were built in previous years on Lyme being 'hard to catch and easy to cure', on the theory that any symptoms remaining after a couple weeks of doxycycline were due to an over-active immune system reacting to a now-vanished infection, totally ignoring the possibility that Lyme bacteria have the means to evade the immune system and do so regularly.  

But enough preaching from me.  Got to go do some work.  :)  Keep reading, and do pick up Weintraub's book.  If you don't have the focus or time to read it, then watch the documentary of the same name 'Under Our Skin' -- it's not as detailed or persuasive as the book, but useful nevertheless.  Will look forward to hearing your thoughts --

Later!
Avatar universal
I was typing too fast, so here is some clarification:  

-- Weintraub's book is named 'Cure Unknown:  Inside the Lyme Epidemic'.  It is available in bookstores and online from various companies

-- An entirely separate work is a documentary film about Lyme, called 'Under Our Skin'  and can be viewed free online, so I just learned.  Search for 'under our skin' and it will pop up several links.

Don't be frightened by this information -- not everyone gets very very ill, and many of us are just moderately miserable.  

That's part of what confuses docs:  the variations of symptoms from combinations of different infections carried by the ticks, and each person's own immune system responding differently from everyone else.

Be of good courage!
Avatar universal
Thanks Jackie. I have my LLMD appointment lined up in NY. I basically just wanted to explain to my GP why the bands 41+ and 31IND were significant along with a clinical diagnosis. Because the paperwork returned from IGENEX stated Negative, yet it recommended further testing, my GP called it a "money-grab" and told me to "cut bait". So I had self-doubt that it was Lyme although I have so many of the symptoms. I emailed photos of my test results to a wonderful LLMD in Canada (Dr. M. who is now retired but runs a support/educational group - you likely know who I am referring to) and he told me that I need to see a LLMD, and recommended the one I am going to see.
I did watch Under My Skin a couple of months ago - very informative!
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