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I need help interpreting my IGeneX results...

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Posted 1/26/2014 2:41 AM (GMT 0)
Hi everyone,
I'm currently sifting through tons of information on this forum and other sites about Lyme disease. I've recently been tested by IGeneX as I've had a ton of weird, confusing symptoms over the past 3 years. I'm interested to see if anyone has had a similar experience or can weigh in on my test results, which are confusing me. (I know no one here can diagnose me, I'm just curious.)

It all started in the summer of 2011 with really bad tension headaches, a stiff neck, and anxiety. I was about to move across the country for graduate school so I chalked it up to stress. I continued to have panic attacks for the next 6 months.

Then I developed bladder issues (felt like I had a constant UTI), stomach issues, and insomnia. These symptoms have waxed and waned over the past two years. I now have neck pain, back pain, diagnosed TMJ, IBS, muscle pain/fatigue, and joint pain. My allergies (which I've always had) have gotten 10x worse. My vision is blurry a lot. I also have mood issues, depression, and anxiety.

I also can't tolerate most medications or supplements (even the ones I used to take). I'm exhausted and a lot of times I have difficulty concentrating on simple stuff. Basically I feel awful all the time and some days are much worse than others.

My other bloodwork shows a high lymph count. All other blood tests are normal except for slightly elevated HHV6 antibodies and mild hypothyroidism. The irritating part is that most doctors think I'm too young to have anything besides stress wrong with me (I'm 26) and the ones who have tried to help don't know what to do anymore.

I asked my primary doctor to test me for Lyme a month ago, and I just got the results sent from his office. As far as I know, he has not seen them yet.

So here are my IGeneX results:

IgM:
IGeneX Positive, CDC Positive
18 kDa -
23-25 kDa -
28 kDa -
30 kDa -
31 kDa IND
34 kDa -
39 kDa +
41 kDa ++
45 kDa -
58 kDa -
66 kDa -
83-93 kDa IND

IgG:
IGeneX Negative, CDC Negative
18 kDa -
23-25 kDa -
28 kDa -
30 kDa -
31 kDa -
34 kDa -
39 kDa -
41 kDa +
45 kDa -
58 kDa -
66 kDa -
83-93 kDa -

Multiplex B Burgdorferi Serum:
Genomic - B Burgdorferi NEGATIVE
Plasmid B Burgdorferi NEGATIVE

Multiplex B Burgdorferi Whole Blood:
Genomic - B Burgdorferi NEGATIVE
Plasmid B Burgdorferi NEGATIVE


Thanks for reading! I look forward to your comments. :-)
Posted 1/26/2014 4:41 AM (GMT 0)
well, I'm a novice at this myself, just having received my son's Igenex results in the mail today. For the past week I've been reading as much as I could online on how to understand these tests.

I've found a few really good websites that explain well what it all means.
Here's one of them: (sorry if it's not a link; I'm not computer savvy enough to know how to do that).
http://www.anapsid.org/lyme/wb.html

If you google something about Igenex result info. you could find more.

From what I'm understanding, and again I'm new at this, but…39kDa is specific to lyme borrelia (spelling?). So therefore, if it's positive, this means you have antibodies for it (against it, however that goes) which means you've been exposed to it (have it borrelia infection).
Others may be able to word it better and maybe there is a finer point or two I'm not wording right, but I think that's correct.

and, the 41 is spirochete specific, which means there are other bacteria spirochetes that can "cross react" with that band, but since you have the 39 + it seems safe to say that the spirochete bacteria that you are making antibodies for is lyme.

So, like it says, positive.

others with more knowledge will probably comment too. Having just received my sons test back today, I'm curious what other information I can learn here too.

My son's tests were negative, but on the IgG he had 39 IND and 41 ++.
I've read that when 39 is IND it can be (or should be?) seen as a low/weak positive. And, I'm thinking especially since his 41 is ++ that the 39 would be seen that way by llmd (we got the results in the mail today, but our appt. with the llmd isn't until next weed.) So, although technically negative, since he has so many symptoms and has the 41++ with 39 IND, I'm thinking lyme is what's going on with him.

good luck to you with all of this! I feel we all need a bit of extra grace in this.
Posted 1/26/2014 6:32 AM (GMT 0)
Hi stacestar, thanks for the link and the info. I'll check out the IGeneX website as well. It really is amazing how much controversy and confusion there is about this whole deal, isn't it? I had no idea before reading about it this past month.

That's the conclusion I drew from the bands I tested positive for (from what I've read). I'll see what my doctor says in a couple weeks. Thankfully he's pretty open-minded and I'm sure if he doesn't know what to make of it, he'll refer me to someone who does.

What are your son's symptoms? Maybe your LLMD will have some ideas or further tests he wants your son to do to confirm the diagnosis.
Posted 1/26/2014 2:43 PM (GMT 0)
Hi Racethelightning!
Welcome to our community!!

If you haven't already, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists (as Lyme rarely occurs by itself), helpful links and pdf's, how to detox when one has these infections, and a list of questions that you can ask any doctor that you are seeking treatment from!

Considering that less than half of those with Lyme will test positive and it says right on your test that you are CDC positive (that's not all that easy to get!!) - you need treatment for Lyme disease. I'd be happy to break down all the different bands and what they mean if you are interested, but in a nut shell the band 39, band 83 and band 93 are all specific for Lyme disease - and they don't cross react with anything else - so there's little doubt that you have it.

Band 41 is actually the tail of the spirochete (type of bacteria) but there are a small handful of different spirochetes that can cross react with that band - so it's not considered specific.

Do you have a LLMD (Lyme Literate Medical Doctor) yet? If not we can likely help you find one.
Posted 1/26/2014 5:07 PM (GMT 0)
Welcome racethelightening! It's good you've done your homework and have some understanding of Lyme.

You sound like me when I was very ill in my 20s and doctors wouldn't take me seriously, telling me I needed to get a life and that I was just depressed, even though I told them I had chronic bladder infections, yeast infection, headaches, fatigue, stiffness, etc. I hope you will look for a LLMD or ND and get on the road to healing. I wish you the best!
Posted 1/26/2014 9:50 PM (GMT 0)
Thanks for the words of encouragement!

Traveler - I just checked out the "New to Lyme" section, thanks. I did find a list of what the bands mean, but I was wondering - what is the deal with IgM being treated as a false positive after the first 4-6 weeks? I keep reading that. Isn't it possible that my body is still reacting as though the infection is "current" and hasn't switched over to IgG even a few years later?

I don't have an LLMD yet, but my primary doctor told me that if I do test positive then he will refer me to a colleague of his who treats Lyme naturally (I guess that makes her an LLND?). He's an integrative doctor, but Lyme is not his specialty. I'm hoping he's knowledgable enough to send me to her based on these results. Thankfully he's one of the few doctors I've met who actually THINKS about what his patients tell him. When I mentioned Lyme he said "You know, that's actually an interesting idea. We should test you."

Garden Peace - Yeah, it's frustrating to say the least. I can't count the times I've heard the word 'stress'. Regardless of stress, anxiety, or depression, it's not normal for a 26 year old to have joint pain and feel exhausted every single day. I'm normally a happy person, I have several good friends, I'm engaged, and I DID have a pretty good job (currently figuring out how much I can work at the moment). I'd love to know who all of these people are who supposedly want 'attention' for their health issues... confused
Posted 1/27/2014 1:38 AM (GMT 0)
Not *another* band 41. There are simply too many of these for them *not* to be Lyme specific.
Posted 1/27/2014 4:55 PM (GMT 0)
"what is the deal with IgM being treated as a false positive after the first 4-6 weeks? "
Ignorance. Lyme disease can and does have a relapsing/remitting component to it. Every so often - due to many factors like immune system strength, abx use, and stress - the immune system will recognize the bacteria as an invader again, and will mount an attack again - most often short lived though.

Chances are quite high that you have another tick-borne infection that is keeping the immune system suppressed - like Bartonella or Babesia - so it's not making the IgG antibodies. A 'chronic' Lyme infection is most often described as having had symptoms for more than 1 yr, although in the lab Lyme can go into it's chronic form in as little as a few weeks. I wish I could wrap my brain around the technical aspect of this better though.

That's really wonderful that you have such a great Primary!! And that you likely already have a LLND lined up is all good news!!

Let us know how things go!
Posted 1/27/2014 5:55 PM (GMT 0)
racethelightening:

I can sympathise with you as I'm 24 and just recently diagnosed with Lyme. Its actually scary how similar our tests results are. To get a doctor to believe you have something wrong with you when your normally healthy and young is very difficult. The good news is that you got a positive test and that's a start.

I've been seeing an LLND who is awesome and uses a combination of Cowden Protocol and her own supplements. Stomach issues have improved greatly so far, but I'm too early in to notice any other significant improvements. Traveler noted, reading the New to Lyme is a huge help and gives you a great overview of the disease.

Anything I can help you with I'm willing.

L.C.
Posted 1/28/2014 3:33 AM (GMT 0)
Traveler - That makes sense about the immune system suppression. I've had allergies (to pretty much the entire world) and other immune issues since I was born (like I rarely get fevers even if I'm really sick - sometimes my temperature even drops a couple degrees if I'm fighting something off), so I wouldn't be surprised if that's messing with the test results.

Lyme Contractor - wow, I looked up your first post where you list your IGeneX results and they are almost exactly the same! You've seen tons more doctors than I have at this point, though. It's good to hear from someone who is treating it naturally, as that's probably the route I'll go.

I'll try to keep everyone updated...should hear back from my doctor any day now. Thanks again for the info and kind words. :)
Posted 1/28/2014 3:54 AM (GMT 0)
racethelightning- I actually just went back and compared them and didn't realize really how close they actually are. Naturally takes a whole lifestyle change, most importantly diet. Eliminating sugar made a noticeable difference in the progression of my symptoms as the bacteria feeds off the sugar.

Anyways you likely got an information overload. Let us know how it goes and we can give you more.
Posted 1/28/2014 5:33 PM (GMT 0)
Just so that you know, I too used only natural means to heal - it really does work!!
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