Igenex test: Band 41

[kathlojo]

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!

[skeetelmore65]

Thank you guys for all of your responses because I've been searching for answers too. My blood-work was sent off to Igenex and they called me and told me that I was positive for Lyme. I asked for a copy of my test results, but only had a positive result on Band 41. I was negative on all the other tests and yes, I'm very ill. It has been a daily battle, since that year..'08. Actually, I wanted to die it was so bad...but, I've kept on fighting and praying. Thank God, I'm still here, but wonder for how long..especially if it affects my heart. :o
I pulled the tick off of me back in '08 and threw the tick in the toilet, but had no idea of Lyme. I was unaware of it, but sure know about it now.
My question is: IS the Band 41 indicative of Lyme? Do you not have to have any other test confirmed positive, to have it? I believe that I do have it because don't believe that they would have called me or put positive on the test, but still...I have that doubt, as I guess we all do sometimes. We feel that we can beat it...and maybe, we can. :)
Never had any abx treatment for it because didn't know that I had it, until 2013. Plus, not real sure about taking abx for that long length of time. I found an LLMD close to me and had the blood-work sent off. IT is suffering daily for 8 yrs, but strange that I found essential oils the same year that I was bit. Started using them daily and adding them to each of my baths and slowly but surely...I started seeing the light. Only use natural products: soaps, cleaners made from oils. I try to get sleep, but was an insomniac for the last 8 yrs., still have some bad nights of it. Until I started finding certain oils to battle it, did I get more of it. Now, I'm sleeping better and actually getting out of bed, which is a feat in itself. o.O  I actually thought that I'd die because I've been so ill, but prayers must have helped me too.
So, is Band 41 imperative in having Lyme? It is the ONLY one that is positive. None of the other tests done were from Igenex, and what is making me question it. I feel that it is Lyme because it is in ALL of my joints and my LLMD says that I'm Neurotoxic too(Brain). I believe that because literally feel crazy sometimes with suffering. My legs never stop pulsating or throbbing and in bed, I run a massage feature, just to fool my brain into thinking it is on purpose. :/ Oh..and my eyes get fluorescent zig-zag lines in them...creeeeepy.
Best to all of you and God be with you... ^_^

[Chrystean]

I have Lyme, and chased my tail for many years,  trying to figure out what was wrong with me. My joints are failing,  and have had multiple surgeries because of it! The fatigue is ridiculous, mood swings, depression, rage at times,  brain fog, hair loss, insomnia, and the list goes on and on. I researched online,  and found bee venom therapy. I'm currently doing that..... It's the only known thing to eradicate Lyme. Research Ellie Lobel.... It's quite amazing,  and you'll get your life back!

[kathloj]

Thanks for your very informative reply! I have an appointment with a LLMD in Plattsburgh who comes highly recommended! Dr. M. a retired LLMD in BC looked at my results and told me I need to go see her.
I have to say, if it wasn't for the internet I'd still be going from Dr. to Dr., or being misdiagnosed or disabled! My neurologist wants to focus on "stress" as being the cause of my peripheral neuropathy. I asked him if "stress" caused my arthritic knees!! He kind of mumbled that too much gets blamed on Lyme, but my reply is that too much gets blamed on stress! Anyway, the internet has probably saved me further years of pain and grief. Thank you to all of you for your informative and educational replies.

[Ricobord]

Lyme suppresses the immune system over time, and antibody production drops as the infection moves out of the blood and into the tissues and nerves.  It seems to me that the vast majority of late stage Lyme patients will show few antibodies.  My doc's P.A. told me once that it is their sickest patients who test negative. I only tested IGeneX positive on the IgM with bands 18, 31, & 41.  Since the CDC ignores IgM 18 & 31, I would have looked completely negative at any other lab.

If your GP already called further testing a "money grab," I wouldn't recommend going to that doctor anymore. That is not an open minded doctor, willing to see something different than what s/he reads in sound bites from so-called experts.

I am very glad you have been persistent and are going to a good LLMD. Many LLMDs consider an Indeterminate (IND) result on a highly Lyme specific band (such as 31) as a sign of. Lyme.  IGeneX and multiple LLMDs have commented that band 31 is often present in patients with neuro symptoms.  It also shows up later in the illness. It is so Lyme specific that it was used for a (failed) vaccine, although IGeneX says that an active Epstein Barr infection could trigger a false positive on that band.  If you test negative for EBV, you can bet the 31 band indicates Lyme.

The Western Blot interpretation was developed using primarily newly infected New England based patients with a bulls eye rash and/or rheumatological symptoms, such as a swollen knee.  Many patients were "negative" on this test one or more of the 4 times they were tested during the study.  Some didn't show a "positive" until a month or so AFTER they completed treatment.

It is ridiculous it is to withhold treatment unless there is a positive test and yet this is the norm.

One expert recommended that the testing protocol include a series of tests when symptoms indicated Lyme but the Western Blot was negative. He was overridden, even though the evidence indicated this was appropriate.

The testing protocol has never been validated against a large group of late stage patients, nor in any other geographic area of the U.S. where strains and even species vary.  The CDC already knows there are other species of Borrelia in the U.S. besides b. burgdorferi, and that patients with other species nearly always test negative on the CDC protocol.  

There is now a test for one other species, b. miyamotoi, but I haven't seen much effort on their part to educate doctors to run this other test if a suspected Lyme patient is negative. They say it's "rare," and don't seem worried about it, but a study a few months ago in Northern CA by Stanford University found b. Miyamotoi all over the parks on the Peninsula (except within the City of San Francisco.) I've seen no acknowledgement from the CDC about this.  I shudder to think how many people there are infected with a different species who will never test positive on a Lyme test.

The CDC finally did run a study about four years ago to see how their testing protocol performed on patients infected in Europe.  It performed poorly, only catching 50% of known cases. (I suspect it was actually much lower than that because they don't know how to definitively identify late stage cases.). In Australia, Lyme advocates are saying that the CDC testing protocol is only finding 1-2% of actual cases, which is much worse than estimates of 40-50% here in the U.S.

I find it absolutely disgusting that the biased, agenda driven process that created the CDC testing protocol and mandated it's use for diagnosis also resulted in it's worldwide acceptance as an internationally accepted testing protocol. It shows you how the medical establishment blindly follows what their "experts" tell them, even when it was corrupt and unscientific and illogical.

So, the long answer is the same as the short answer.  Gotta go to a LLMD who isn't hung up on inadequate tests or anti-Lyme sentiment.

[JackieCalifornia]

"So I had self-doubt ..."  Yes, that's exactly where many of us got to in the process of figuring out what was making us feel so lousy.  I'm glad you looked beyond your (no doubt well-meaning) GP's comments, but many people don't.  So good for you!

I gave up trying to explain to docs who scoff at Lyme ... they just thought I was gullible and got taken in, and many of them didn't want to be party to treating a patient who was engaging in questionable medical care elsewhere.  It's a complex dance.

[kathloj]

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!

[JackieCalifornia]

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!

[JackieCalifornia]

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!

[kathloj]

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?

[mojogal]

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.

[JackieCalifornia]

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!