2nd IgeneX test results....Do I really have Lyme?

Hello everyone...I had my first IgeneX test last fall and my results were:
IFA- 80 (positive)
IgM
31++ (epitope test negative for Bb)
39 IND
41+

IgG
39 IND
41++

CD57 - 93

negative for all co infections.

We repeated the testing a few weeks ago and I got these results today but am confused....

IFA 40 (equivocal)

IgM
31++
41++
58+

IgG
41++

Multiplex PCR serum
Genomic- negative
Plasmid- positive
*confirmed by Southern Dot Blot* (have no idea what this means...)

Multiplex PCR whole blood
Genomic- negative
Plasmid- positive
*confirmed by Southern Dot Blot* (have no idea what this means...)

relapsing fever and babesiosis PCR was negative

C pneumoniae IgG 1.41 (positive)
c pneumoniae IgA 0.24 (negative, however I know I have low IgA so this result can't be relied upon)

CD57- 77 (so it's dropped 16 points since Sept)

C6 Peptide- 0.25 (negative)

I really, really do NOT want to have Lyme disease...which is why I've put off having any kind of treatment and requested to be retested.....the ordering doctor knows *nothing* about Lyme disease so he can't help me.

Can ya'll tell me if it looks like I do have it? As a side note, I know that I have reactivated EBV (I was thinking maybe that was making my initial Lyme test appear positive), and I also have CMV (not sure if it's reactivated, as it hasn't been retested since 2009)

*** to note, I know I am low IgA (56 as of last summer) and I was normal IgM last summer, but am now also low IgM (now 64, was 186 last summer) so it's interesting that my IgM antibodies are to Lyme are still showing....I am awaiting testing for my IgG quantitative and subclass antibodies, as it appears I have developed an acquired immune deficiency (LymeAIDS, anyone?)


Thanks for reading and for any responses....

I agree that going by exposure and symptoms is much more reliable than blood work.
Here are some links that explain how to read the test.
www.reocities.com/HotSprings/Oasis/6455/western-blot.txt
www.stopthelymelies.com/lyme-disease-101/how-to-decipher-igenex-results

IGM is for a current infection
IGG is for a past infection, or current infection if symptomatic

Band 41 is considered one of the first bands to show up. In China, they rule out all other options of band 41 being positive, and if they rule out associated infections, then a positive band 41 is considered a positive diagnosis for lyme.

Between your first test and second test, more bands have shown up as active.

31++
41++
58+

From one of the links
"There are nine known Borrelia burgdorferi genus specie specific KDA Western Blot antibodies (bands):

18 23 30 31 34 37 39 83 and 93."

So - you have a band, band 31 that is specific to lyme.

What are your symptoms? Have you tracked them?

What is your score on this questionnaire?

www.tiredoflyme.com/horowitz-lyme-msids-questionnaire.html ?

If that was my blood work - I would not tarry - I would sort out a lyme protocol.

People DO go into remission. People DO get their life back.

I DID NOT have access to an LLMD.

I've been sorting it out by doing my own research, advice here, and recently a consult with a Buhner herbalist. I am at the phase where I was symptom free for a month, but have relapsed a bit, which I found out, is normal.

The only band I had positive was band 41. I'd like to retest, but am using money for treatment instead.

Post Edited (multifacetedme) : 3/13/2017 3:16:46 PM (GMT-6)

multifacetedme said...
I agree that going by exposure and symptoms is much more reliable than blood work.
Here are some links that explain how to read the test.
www.reocities.com/HotSprings/Oasis/6455/western-blot.txt
www.stopthelymelies.com/lyme-disease-101/how-to-decipher-igenex-results

IGM is for a current infection
IGG is for a past infection, or current infection of symptomatic

Band 41 is considered one of the first bands to show up. In China, they rule out all other options of band 41 being positive, and if they rule out associated infections, then a positive band 41 is considered a positive diagnosis for lyme.

Between your first test and second test, more bands have shown up as active.

31++
41++
58+

From one of the links
"There are nine known Borrelia burgdorferi genus specie specific KDA Western Blot antibodies (bands):

18 23 30 31 34 37 39 83 and 93."

So - you have a band, band 31 that is specific to lyme.

Thank you-- though I thought that 31 could be cross reactive with EBV and other viruses?

Also--- as far as symptoms, here was my initial post to the forum...

Hi there.......I fear I may be the longest infected and misdiagnosed person I know of. In July of 1987 (over 29 years ago), I became acutely ill-- seemed like the flu but much worse-- I was sick for a month. This was after I had found a deer trail across the street from my house and would regularly go over, climb a tree, and watch the deer walk by). I was standing at a bus stop and became acutely ill-- felt like I didn't have the energy to hold my body up, had to go back home and lie down. I basically didn't get up again for a month. I had a fever, sore throat, couldn't walk, bruises on my legs, lost a ton of weight, debilitating fatigue...it was like the flu on steroids. I was tested for mono and leukemia and I don't know what else but nothing was ever found and the doctor had no clue why I was so sick. He ended up giving me some type of medication (maybe an antibiotic, I can't remember, but I gradually got better)......within a few months-- I started having panic attacks. Severe anxiety would hit me out of nowhere and cripple me. I had "crashing" episodes where I would very suddenly get a fever and debilitating fatigue and would have to go to bed and it would pass in a few hours or a day. I started having GI issues, lost even more weight (down to 92 pounds at one point and was told I had anorexia <sigh>).

All through my early 20's I suffered with GI issues, constant bronchitis, pneumonia, URIs, depression, panic attacks, and anxiety. Then in 2005 I had my second son-- a very difficult pregnancy followed by a C-section. After that, my "crash" episodes became more frequent (by this time, I no longer had fevers with them usually, I would just nearly pass out from fatigue very acutely). I started going to the doctor more-- begging for answer. The fatigue & anxiety were severely limiting my life. I was put on disability in 1999 when I was 28 years old. It was awful. I had always been a hard worker, and had worked at least one, if not 2-3 jobs at a time ever since I was 14 years old and could get a work permit.

In 2007, I had gained a bunch of weight and decided to start working out and eating better. Took me 2 years, but I lost 30 pounds and was riding my bike around 100 miles a week, running, lifting weights-- I ran over fifty 5K races from 2010-2015, also ran a few 10ks and a half marathon. I was really fit, feeling pretty good physically -- aside from my anxiety and crashing fatigue episodes....

In 2010, I had a HORRIBLE year-- lots of stressful things happened and of course my health suffered-- ovarian cysts, adenomyosis, suspected endometriosis, abscessed tooth, diagnosed with CFS......it was rough. I started going to therapy again (I had went off and on throughout my life for the anxiety and depression issues and other things) thinking maybe I could "WILL" myself better because the drs had said there was nothing wrong with me, must be in my head. Didn't help.

In 2013 I started having trouble breathing and starting have cardiac issues. Was diagnosed with 3 leaky heart valves (including my aortic valve). All my lung function tests came back normal so I was diagnosed with "exercise induced asthma". Wrong.
I found a functional medicine dr in 2014 and he tested me for a bunch of stuff (including Lyme with the useless Elisa test, which was, of course, negative) and he couldn't really find anything wrong with me, either.

Starting in 2015, I started having memory issues, and now this year I became unable to run or work out hardly at all. I collapse if I try to run. I went from being an athlete to being a spectator and I am so frustrated! This year I started having issues with fine motor skills-- dropping things, my arm becoming numb, legs twitching, toe twitching, trouble walking, ringing in ears getting worse, I started to thing I must be imagining all this into existance-- NO ONE can have all these symptoms and diagnoses, it was ridiculous. I was sent for an EMG-- totally normal-- and *didn't hurt at all*-- dr said I had the highest pain tolerance of anyone he'd ever tested and THEN DIAGNOSES ME WITH FIBRO! How does that work??? A hallmark symptom of fibro is REDUCED pain tolerance and all over, chronic pain. I never had that. I DO have neck and shoulder pain nearly every day. I now also have joint pain, primarily in my hands, knees, shoulders and feet. I was tested for RA, lupus,celiac, all the auto-immune stuff....again, all were normal....then I got a low IgA result. And something in one of my tests mentioned inflammatory cytokines. I started doing my own research....found a lab that did a BLOOD TEST for fibro. I asked my dr for it and he agreed to order it even though he'd never heard of it. I wanted to KNOW for sure that I had fibro or not. Test came back POSITIVE. At this point, I'm super confused...I DO NOT have typical fibro symptoms.

I do not want to go on a biologic for a disease I don't believe I have....it was at this point that I finally ordered the IgeneX kit and asked my dr to sign for it.l He did. It came back as IFA positive for b burgdorferi G/M/A (my number was 80; 40 and under is negative, 41-79 is equivoval and 80 and above is positive).
My IgM western Blot was IgeneX Ind and CDC Negative (I am ++ for band 31, IND for band 39 and + for band 41. They are running test#488 to follow up on the IND for band 39 and if that comes back positive, I will be both IgeneX and CDC positive for Lyme). My IgG Western Blot was IND for band 39 and ++ for band 41, so again negative according to both IgeneX and CDC. My multiplex serum B. .burgdorferi was negative genomic and plasmid (I have no idea what this means). My multiplex whole blood B. .burgdorferi was negative genomic and plasmid (I again have no idea what this means). My CD57 was low at 93 (should be over 200, ideally).

multifacetedme said...



What are your symptoms? Have you tracked them?**

What is your score on this questionnaire?

www.tiredoflyme.com/horowitz-lyme-msids-questionnaire.html ?

If that was my blood work - I would not tarry - I would sort out a lyme protocol.

People DO go into remission. People DO get their life back.

I DID NOT have access to an LLMD.

I've been sorting it out by doing my own research, advice here, and recently a consult with a Buhner herbalist. I am at the phase where I was symptom free for a month, but have relapsed a bit, which I found out, is normal.

The only band I had positive was band 41. I'd like to retest, but am using money for treatment instead.

I have tracked my symptoms-- I listed them in a post in reply before you edited your comment. My Horowitz Lyme questionnaire score was 90. I have a telephone appt with an LLNP next week, but she can't order any medications for me, only non pharmaceuticals since I can't see her in person. It's good to hear that people can get their life back....I feel like the last 30 years of my life have been stolen from me and from my children (I've never been able to take them on a vacation due to always being sick....they are 18 & 11 years old).

Thankfully, my insurance covers most of my testing or else I wouldn't have repeated it. There's just soooo much conflicting information and I do not have the energy to even read the books, much less try and figure out my own treatment protocol

Thank you for replying. I do appreciate it.

If your Horowitz score was 90 - that would warrant right action. I agree with julymorning, anti-biotics aren't an easy fix. Sometimes they work for people, sometimes they don't.
You might want to consider exploring: Stephen Buhner's protocol and some here have benefited greatly from Chronic Tonic. I started with Buhner's protocol, and recently added Chronic Tonic to switch it up a bit.

workingk9 said...
I don't want Lyme because there really are no treatments for chronic Lyme...


2) The only truly effective treatment for Lyme (in my experience and research) is stem cell therapy or IVIG...I've yet to hear from a single person who took antibiotics (either long or short term) and was "cured".....symptoms *always* come back/people always relapse...be it weeks, months, or years later with antibiotics, and even herbal and other holistic/alternative treatments.
3) Since there are nearly no doctors that believe it (chronic lyme) exists, there is no proven & consistent treatment protocol, every doctor has his or her own protocol, nearly nothing is covered by insurance, people claim everything from bee venom to ozone therapy to magnetic therapy to herbals to antibiotics are the "cure"...yet I know not of a single case that has lasted...I could be wrong...but I don't really believe there IS any hope of getting better with Chronic Lyme...I think there's just a masking of symptoms, trying to keep them at bay, and cycles of feeling better and worse...

Those are my reasons for really not wanting Lyme...it would be so much easier to have MS, or cancer, to be honest. At least they are recognized and there are doctors everywhere who treat them and insurance covers it...

Well, you're not correct - there are treatments for chronic lyme.
...and no, stem cell therapy or IVIG is not known to be effective to treat lyme. I don't think stem cell therapy has been used long enough to know what it will add to patient's with chronic lyme...
IVIG is something that is done in addition to lyme treatment not instead of.

I know 'of' many people that have treated lyme successfully.
I also know personally (have emailed with, and/or talked to) several people that are in remission - some for many years.

So, let's look at this logically. I don't think anyone here wants chronic Lyme. I know I cried when I was diagnosed - I was both relieved to finally have a diagnosis as well as scared out of my wits, as by then I knew very well what was going on with these diseases and the difficulties with it.

But - and here's the main thing for you right now - you have the disease. You've had 2 tests that show you that you have it, so now, what are you going to do about it? It's not like you can just wait it out. As you likely know, I waited 40 years - and if it was ever going to resolve on it's own, after 40 years it should have. But that's not how bacterial infections work - they MUST be treated or the damage just continues.

So, what are you going to do about having a bacterial infection? You get treatments, even if they aren't the most sophisticated protocols around, we find what works for us and stick with it until symptoms resolve, showing that the bacterial load is low enough for our immune system to keep it in check. Just like it does with a number of viruses.

While you are correct in that not many doctors believe in Chronic Lyme, we do have lists of those that do. You can contact one of the mods to see if there are any near you. Or you can do as many do and do self treatments - there's still lots of options in self treating. But one thing is for sure, you will only get worse as you stay in denial.

I am NOT being hard on you - or trying to not be. I was in denial when I was reinfected - which is more than slightly embarrassing. I mean I realized I had picked up these infections again, but I was so overwhelmed with fear and anger over it, that I started dwelling on it, and then PTSD like issues started coming up and I ended up waiting 2 months to get back into treatments - that was a bad mistake because I could have really gotten in a "good hit" to the infections had I kept myself together and just gotten back into treatment right away - but instead it took me 2 weeks to even tell my hubby what was going on.

So, please don't be so afraid of your diagnosis (which you have with those tests) and start considering what you will do for treatments. We are here to help you through it all, from choosing a protocol, to getting through treatments and celebrating when you are finally healed.

multifacetedme said...
If your Horowitz score was 90 - that would warrant right action. I agree with julymorning, anti-biotics aren't an easy fix. Sometimes they work for people, sometimes they don't.
You might want to consider exploring: Stephen Buhner's protocol and some here have benefited greatly from Chronic Tonic. I started with Buhner's protocol, and recently added Chronic Tonic to switch it up a bit.

Thank you....I do have his book...but haven't had the energy to read it read. I also have both of Horowitz' books, Cure Unknown, and a few others....if only they were in audiobook format....I'd have listened to them all by now

I will look into Chronic Tonic. I am open to anything at this point and just need guidance, but can't expect others to do it for me. I'm just overwhelmed.

Thank you for taking the time to respond.

Nosila said...
I listened to an interview with Dr. H. recently, and he was asked about stem cell therapy. He only thought it was useful in specific cases where there was definite tissue damage, not for most people with Lyme. For most of us, he seemed to say that we can heal by killing the bugs and busting biofilms.

That's the million dollar question though....HOW do you kill the bugs and bust the biofilms? Each doctor has their own protocol...there is no consensus and so we are at the mercy of whichever doctor we live near/can afford/etc...

:-(

workingk9 said...

Nosila said...
I listened to an interview with Dr. H. recently, and he was asked about stem cell therapy. He only thought it was useful in specific cases where there was definite tissue damage, not for most people with Lyme. For most of us, he seemed to say that we can heal by killing the bugs and busting biofilms.

That's the million dollar question though....HOW do you kill the bugs and bust the biofilms? Each doctor has their own protocol...there is no consensus and so we are at the mercy of whichever doctor we live near/can afford/etc...

:-(

Biofilm busters: serrapeptase, lumbrokinase, Lactoferrin and Xylitol, - to name a few.

Each Dr. has their own protocol because there is more than one way to be treated....and several options.

You don't have to be at the mercy of a doctor...you can do an herbal protocol on your own. many people do this - some people choose herbal because they can't afford a LLMD.

Girlie said...


Biofilm busters: serrapeptase, lumbrokinase, Lactoferrin and Xylitol, - to name a few.

Each Dr. has their own protocol because there is more than one way to be treated....and several options.

You don't have to be at the mercy of a doctor...you can do an herbal protocol on your own. many people do this - some people choose herbal because they can't afford a LLMD.

Thank you! I'll look these up.

I don't think you should be comparing Lyme to HIV. One is bacteria the other viral. Lyme doesn't shut down the immune system or I would have died of pneumonia years ago.

Lyme can overwhelm it, or drive it crazy changing forms, or just flat out hide from it, but all the bacteria is interested in is protecting itself.

The Borrelia can shut off our immune system's ability to see it, as well as affect our immune cells memory of it(explaining how we never build an immunity to it and can get re-infected many time).

But the Borrelia don't care to mess with it beyond that. HIV has the potential to destroy it permanently.

Healing Lyme is dependent on us actually helping our Immune system get it's strength up to support all the areas of our bodily functions.

PeteZa said...
workingk9 - one more book for your lyme library - Unlocking Lyme by Dr. Rawls. He was a ob/gyn and got lyme. He went the herbal route.

This book is super easy to read!! I have read all of Buhner's books and this guy takes Buhner's Healing Lyme and dumbs it down for us lyme brains to easily read.

And he even gives his protocol in the book, which is super similar to Buhner's.

I can read in your post how much you hate this disease. I felt the same way. I caught mine early and treated and am now in remission. Later this month I will be 1 year symptom free. So, there is hope.

Last summer I was riding my bike again like crazy and I'm an old broad of 65. This summer look out!!! I'm going for the gusto.

You totally sound like you have a driven personality. I think once you wrap your head around this thing, you will conquer it. You just sound tenacious.

Anyway, have no fear, because I will be your cheerleader!

Keep asking questions and vent all you need here. We totally understand and have done it all one time or another or two or twenty.

Thank you!! I will order it now (gotta love Amazon Prime!). You're a cyclist? I am, too! That was my first passion. My dad is 71 and he has raced for over 25 or 30 years. He just celebrated his 71st birthday by riding 71 miles last month. Last year he rode 70 miles for his 70th and I was able to do 10 with him). He's gotten lots of gold medals in the Senior Olympics and made the podium many, many times at races across the tri state area. I got my love of cycling from him. My stepmother is a marathon runner (She even ran Boston!) and so my second love is running. I realllly want to get back to both of them. I love my bikes (I have a Fuji Roubaix road bike, a Fuji mountain bike and a Masi road bike) and miss riding them dearly.

Congratulations on being 1 year symptom free. It is ALWAYS wonderful to hear success stories. Did you go completely herbal or also do antibiotics?

Thank you for taking the time to post, it was uplifting to read and has lit a fire under me. I AM determined and driven and I need to figure this out

Thanks!!