Igenex Interpretation

Hello.  For the past 5 years I have dealt with various alarming symptoms, including but not limited to: fatigue (increasing in severity), dizziness, poor balance, transient aches and pains, headaches, mental fog, low body temperature and tremors.  The symptoms come and go, and no doctor so far has been able to determine the cause.  I recently went to see a ND, and she ordered the complete Lyme panel from Igenex.  She gave me my results just before going on maternity leave, with no interpretation, so I've kind of been left hanging.  Here they are:

IFA: Equivocal

IgM Western Blot: Positive
(31 +++
34 +
39 IND
41 ++
58 +
83-93 +)

IgG Western Blot: Negative
(41 ++)

CDC/NYS result: Negative (not sure what this means?)

Genomic and Plasmid results negative for both plasma and WB.

I took the results to my MD, but she barely even looked at them, instead ordering a Lyme test to be done here in Canada (which I've had twice in the past 5 years, both times with a negative result).  I live in south central Manitoba, a prime tick environment, and have had numerous tick bites since childhood.

I would appreciate a professional opinion on these results, and any advice on where to go from here.  Thanks!

[JackieCalifornia]

Sorry to hear you've been so ill for so long.  No one here is medically trained, to my knowledge, so you won't get a 'professional' opinion, just things we have picked up from our own illnesses and those of our families and friends.  That said, here are some comments on what you've written above:

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IgG and IgM are measurements of immunoglobulins, which are the stuff your body manufactures against bacteria.  IgM happens shortly after the infection starts, and at some non-specific point in time, the IgM reaction fades and your body begins to make IgG.  That way a doc can estimate where you are in the course of an infections, either recent or longer established.  I think this helps the doc match up symptoms with where you are in the disease process.  Dunno for sure.
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Each of the numbers on these tests (numbers 31, 39, etc.) is called a 'band', and the different bands have different meanings and indications (and the more + signs, the stronger the indicator).  IND means indeterminate, meaning the result is maybe yes and maybe no):

IgM Western Blot: Positive

(31 +++      =====>  this is outer surface protein A, which indicates ONLY Lyme bacteria

34 +           =====>  this is outer surface protein B, which also indicates ONLY Lyme bacteria

39 IND        =====>  this is a major protein component of Lyme bacteria's little whiplike tail, and indicates only Lyme bacteria

41 ++     =====>  this could be other spiral shaped bacteria besides Lyme, but it could also BE Lyme, but is not specific to Lyme

58 +     =====>  unknown, but could be Lyme

83-93 +)     =====>  not sure, but could be Lyme


IgG Western Blot: Negative

(41 ++)   =====>  all spiral shaped bacteria show this as positive, but may or may not be Lyme

Part of the big argument between Lyme docs (called LLMD for short by us patients, meaning Lyme-Literate MDs, or those who 'get' Lyme) and nonLLMDs is how many bands and which bands it takes to confirm a Lyme diagnosis, and how many + signs each band has to have to count as positive enough.  An LLMD will more likely diagnose the way the ====> comments above are explained, and so is more likely to give a Lyme diagnosis than a nonLLMD would.
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IFA is, I think, the same as ELISA, which is a test often done at the same time as the Western blot, both focussed on measuring the presence of a Lyme infection.  Neither the ELISA nor Western blot is perfect, and one tends to give false positive results (meaning you don't have the disease, but the test too often says you do) and the other test tends to give false negative results (meaning you DO have the disease, but the test says you dont.)  The idea is that by using both tests, they balance each other and the doc can make a more educated guess about what you've got or not.  (Yes, the testing really is this inaccurate.)
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I don't know about genomic or plasmid measurements.
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What you report having happened, where your nonLLMD doc blew off the test results, is not uncommon.  It's happened to a bunch of us.  But when you get in to see your ND, or someone else in the ND's practice, perhaps, you may get a totally different reading.  I'm not medically trained, as noted already, but your test results sure are suspiciously positive.

Another couple of points:  If you have been infected a long time, your immune system just gives up after a while, so someone who has an old infection lurking may not show up very positive at all on the tests.  NonLLMDs don't take this into account, as far as I know.  Sometimes after antibiotic treatment is begun, it stirs up your immune system, and the positive test results rise noticeably, thus tending to confirm the diagnosis.  That you have had your symptoms for 5 years is (to my understanding) definitely long enough for that drop off in immune system activity to occur, and I had something similar happen to me.  My LLMD was impressed that I had such strong test results, given how long I had been ill with symptoms not unlike yours.

Another aspect:  possible co-infections, meaning other infections carried by the same ticks.  These illnesses need to be tested for separately and sometimes require different meds from Lyme.  An LLMD would ask you carefully about symptoms, and based on that would know which co-infections to test for.  NonLLMDs don't generally do that.

There are Lyme patient groups in Canada.  If you search/google "lyme manitoba", there will be the usual run of governmental and mainstream medicine websites, but if you pick through the list, you'll soon figure out which ones are more ... umm, progressive.  The first hit in my search list for 'lyme manitoba' was promising.

Hope this is helpful.  Let us know what other information might be helpful to you.  Oh, also ILADS [dot] org is the main group for LLMDs and under the tab 'about Lyme' there are documents such as Burrascano's 'Diagnostic Hints and Treatment Guidelines' that seem a bit much, but the more you read them, the more understandable they become.

Best wishes, and let us know how you do.  We've all been in a deep hole from Lyme, and it's worth the fight to get out of it.  Go get 'em!  and take care.

[JackieCalifornia]

PS  I just reread what I wrote above and want to add a couple of things:

-- NonLLMDs don't like IGeneX testing and tend to disregard the results.

-- Your test results look pretty positive to my uneducated eye.

-- I'd get in to see your ND or someone in the ND's practice or someone else.  Sad that your doc would just split without arranging a copacetic doc to watch over her patients.  I'd call the office and bug them to get you an appointment with a sympatico doc.

[JAMS81]

Thanks for the reply, Jackie - you were very helpful.  I didn't mean to sound uppity when asking for professional opinion, it would just be nice to have someone in the medical field take me seriously.  My doctor was more than willing to refer me to a psychiatrist or offer me Prozac, so even I am beginning to question my state of mind!!  Sounds like so many others are in the same boat, so I'll stop moaning...

My ND certainly was more receptive to the possibility of Lyme, so I will continue in that direction.

I have to take some of the blame for taking so long to get help, as I tend to be a "suffer in silence" type and I hate going to doctors.  However, I'm turning 30 this year and I feel 29 going on 60, so something's gotta give!  I have begun "beating the bushes", and it has been encouraging to find support groups such as this.  I am beginning to find some closer to home.

Thanks for the encouragement - at least not everyone thinks I'm crazy!

[JackieCalifornia]

Good for you!  Glad you're taking charge.

You didn't sound uppity at all (and I have a patent on being uppity, or so I'm told) ... it's just that nobody here wants anyone to get misled or hurt by any stray comments that might be made.  You're entitled to moan about the brush off you've gotten by the Dr Prozacs of the world.  Sad, isn't it!

When you find what seems to be a brick wall in your search for a return to health, dig under, climb over, or go around -- it can be a long road back to health, but from all I have heard, it is doable at least at some level.  

Today I went somewhere I hadn't been for a couple of years, to a building with a complicated layout that requires a strange combination of poorly marked stairs and elevators and ramps to get to where you're going.  Today it was no big deal -- I could figure it out, it didn't make me want to cry, and I wasn't even tired when I got there and did my errand and left.  I could only compare that to my last visit there, when I kept getting lost in the elevator/stairs/hallway connections, had a terrible time getting up the several flights of stairs, and the parking garage layout was the outer lobby of h*ll.

This is real progress!  I wish and hope the same for you.  And remember:  it's Lyme that's crazy, not you.  :)

[JackieCalifornia]

and PS:  being a suffer-in-silence type as you indicate DOES cause problems.  I have this really bad habit of trying to be friendly and communicative with docs, figuring they see crabby sick people all day, and maybe if they get a get some kindness from me, they will pay more attention.

WRONG.  I have to force myself to drop the 'happy person' approach, because it results in ugly things happening.  I suffered in silence some years ago all the way to and through a ruptured appendix, because the docs didn't think I "looked sick enough" to have anything serious.  Now I make notes of symptoms before I go to the doc, so I don't minimize things when I'm there.

[carrie235]

HI Jams:

That Igenex test in my personal opinion IS A POSITIVE test.  I've been the Dr. Prozac route too.  My docs thought it was all in my head and after two months of crazy symptoms, I started thinking maybe it was in my head, started the prozac, got crazy acid reflux from it, and then cold turkey off it.  Finally got dx this January.

Wish you the best of luck.

[wonko]

For what it is worth, my (non-medically trained) opinion is that:

1.  None of the tests for Lyme are that great; there are too many strains, too many co-infections, and there is too much variation in individual antibody response to Lyme.

2.  Treatment for Lyme disease in the form of oral antibiotics is relatively low risk.  (Of course, there is always some risk associated with any treatment or substance we put in our body.)

3.  LLMD's consider Lyme to be a clinical diagnosis that does not hinge on glaringly positive test results.

4.  Lyme patients often experience an obvious response to antibiotics.

So, adding up those statements, you could seek out an LLMD who (in my opinion) would likely diagnose you and start you on antibiotics, which would put you at (again, in my opinion) little risk, and you would know soon based on response or a lack there of if the Lyme diagnosis fits the bill.

This was my approach, I was honestly rather skeptical but I had no acceptable answer for my illness and I had exhausted all other diagnostic possibilities.  

And yes, I ignored signs for a long time too, but luckily even late-state Lyme is treatable, albeit a bit tougher!

Good luck, it's tough not knowing what is wrong, let alone on top of that having to go "off the beaten path" to explore Lyme disease.  For me it has been well worth it, and if nothing else you may have one more thing to cross off of your list of suspects.

[JackieCalifornia]

One more thing:  I see I may have skipped over the 'CDC/NYS' result, which says 'negative.'

The US Centers for Disease Control (CDC) based in Atlanta are a governmental arm or affiliate that tracks epidemics, meaning the spread of diseases generally.  To avoid accidentally classifying a person sick with one thing as a person sick with the thing the CDC is trying to track, they set the requirements to be confirmed as having that disease very high, so that their statistics are clean.  At the price of clean stats, some people who actually have the disease are missed because they don't have all the 'required' symptoms.

Unfortunately mainstream medicine has adopted the CDC surveillance standard for Lyme as the *diagnostic* standard, meaning if you don't clear the high bar set the CDC, then you are turned away from treatment.  One CDC requirement, I believe, is a circular red rash, but perhaps half of us with Lyme never saw a tick or had a rash.  The CDC says we don't have Lyme, never mind the other symptoms we DO have.

NYS is the New York State health department, which also has played a role in establishing the CDC standards as the minimum for a diagnosis.  Thus when your test says 'negative', docs should not be relying on that as diagnostic, but nonLLMDs do so.

NonLLMDs also, I believe, use a reading of the Western blot and ELISA tests which requires more ++++s on more bands, and nonLLMDs can be very rigid in this view, never mind how sick the patient is with what otherwise adds up to Lyme.  The bottom line is to find a doc who looks at you instead of only the test results.

[JAMS81]

Thanks everyone for your input.  The support is much appreciated - I had no idea Lyme was such a political disease!  I haven't started treatment as of yet, but I found a naturopath nearby who treats Lyme disease, so I've made an appointment to see him.  Has anyone heard about IV ozone treatment?  It is apparently used in conjunction with ABx.  I've researched it online, but I'm wondering if anyone has had it done or knows firsthand about its benefits?

[JackieCalifornia]

Oh yeah, Lyme is political in a big way.

You're fortunate to have found a naturopath who is interested in Lyme, but always have your guard up -- Lyme diagnosis and treatment is the frontier of medicine, and because things are still chaotic, people sometimes try treatments that are on the fringe.

I've not heard of anyone here using IV ozone and don't know anything about it, but vaguely remember ozone is a molecule of three oxygen atoms (O3) instead of two (O2).  I did a little reading on it, and it appears not to be used in the US, but may be in Canada.

Each of us ends up doing our own research and sometimes switching docs when it's not going well, so you are your own best resource.  Someone else here may be able to comment more usefully than I.

Let us know how you do, okay?