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Igenex Results.. Can anyone help me out?

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Posted 6/15/2010 9:30 PM (GMT 0)
I got my Igenex results back today and I tested..
IGM Positive
CDC/NYS Negative
18 kda -
22 kda -
**23-25 kda -
28 kda -
30 kda -
**31 kda +
**34 kda IND
** 39 kda -
**41 kda +
45 kda -
58 kda-
66 kda +
73 kda -
**83-93 IND

IGG Positive
CDC/NYS Negative

18 kda-
22 kda -
**23-25 kda -
28 kda -
30 kda -
**31 IND
**34 +
39 IND
41 ++
45 ++
58 +
66-
73-
** 83-93 -

B.Microti Negative
B.Duncani Negative


I am very confused by these results. I have had Depersonalization symptoms for 10 years. Brain fog. Trouble comprehending speech and reading, brain fog, Extremely shaky, sexual dysfunction, Floaters, Drop foot (for the last 2 weeks), Paralysis in my hand (drop wrist)...

What do you guys think?
Posted 6/15/2010 10:35 PM (GMT 0)
You have some symptoms consistant with Lyme and positive results on Lyme-specific bands, so your results are certainly significant. It would be best if you could take these results to a Lyme-Literate MD for interpretation and diagnosis.

Take care,
Posted 6/15/2010 10:57 PM (GMT 0)
Thank you so much Razzle.

Does anyone know of a Lyme Literate Doctor in Canada Ontario?
Posted 6/15/2010 11:21 PM (GMT 0)
This is a positive blot!! You are lucky in some ways to get it! Sorry, don't know one in Ontario but I can ask my friend.
Posted 6/16/2010 4:04 AM (GMT 0)

optimusrhyme said...
Thank you so much Razzle.

Does anyone know of a Lyme Literate Doctor in Canada Ontario?

If you will click my email icon and send me an email I will send you some information on getting LLMD referrals in your area.

Gary
Posted 6/16/2010 4:46 AM (GMT 0)
Hi optimusrhyme,

Welcome to the forum:) We're so glad that you found us! Here is a breakdown of each band:

Western Blot Bands description:

9 cross-reactive for Borrellia
12 specific for Bb
18 unknown
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
45 cross-reactive for all Borellia (sometimes people with Lyme who have
this band positive also have the co-infection Ehrlichiosis)
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients

Here is a website that explains footdrop causes and symptoms:

www.mayoclinic.com/health/foot-drop/DS01031/DSECTION=causes
Posted 6/16/2010 6:21 PM (GMT 0)
How much does this test cost?? My insurance doesn't cover it-:)
Posted 6/17/2010 3:33 PM (GMT 0)
Check out www.igenex.com for testing and costs. They also list a toll free phone number.

No insurance will cover the costs.
Posted 7/4/2010 10:02 PM (GMT 0)
So I saw an Infectious Disease doctor and he said theres no way I have lyme... Can anyone here shed some more light on my situation, should i go see the LLMD? I have some bad cognitive symptoms aswell as "foot drop".. Im not sure what to do this doctor seemed so confident i didnt have lyme.. shakehead
Posted 7/4/2010 10:55 PM (GMT 0)
Did he read it from the manual or did he have it memorize when he told you that you didn't have lyme disease? I'll bet he had it memorized word for word. rolleyes (Excuse my sarcasm. It isn't directed to you, it's directed to these idiots who claim to be infectious disease doctors). So, what did this ID doctor diagnose you as having? Did he tell you why your Igenex test came back consistent with Lyme disease?

Did he tell you why you have "Depersonalization symptoms for 10 years. Brain fog. Trouble comprehending speech and reading, brain fog, Extremely shaky, sexual dysfunction, Floaters, Drop foot (for the last 2 weeks), Paralysis in my hand (drop wrist)..."?

Did you ever get a LLMD referral? I don't recall you mentioning that you've seen a LLMD or even asked for a referral here. Maybe I missed it. If you want to seriously get to the bottom of this ordeal, then you need to see a LLMD, and the sooner the better. It only gets worse from here. Don't play around with this disease by wasting time visiting doctors who don't have a clue about it. I know it seems logical that an ID doctor would have a clue, but sadly, most do not.

Like I said before, if you want a list of organizations that can refer you to and LLMD, just ask, and I along with others here will be glad to send them to you. I believe Dan's Mom and a few other people have a list that they can send to you.

Gary
Posted 7/5/2010 3:49 AM (GMT 0)
In a recent post, I noted that my new LLMD who happens to be an infectious disease Dr (w/ 20 yrs experience w/ Lyme) , STATED, that regardless of what the CDC states, and regardless of the number of bands Igenex requries for a lab positive infection w/ Lyme, it is the latest consenus that a positive reaction on just one Lyme species specific band (esp 39) diagnosis Lyme. BECAUSE it means that specifically LYME anitbodies are found and you would not have Lyme antibodies w/o having Lyme.

My insurance paid for this test from Quest, which is clearly an inferior test compared to Igenex. However, it DID lead me in the right direction. There are quite a few 'species specific' bands that Quest does not even read. And there are insignificant bands that they do read.

Still -- to anyone w/ insurance, who cannot afford to take the best lab tests from Igenex, I would advise starting w/ your own DR and making sure he/she orders Western blots IgG and IgM and go from there. Also make sure he/she understands that this test MUST be read within 24 hours receiving your blood.

If those results are truly questionable and you still feel you have Lyme, well, then, go on and get what you can afford from Igenex.

My question to my new LLMD was a bit of a stumper: If it is clear that I have Lyme specific antibodies, could this mean I was infected at one time, but no longer have an active infection. How does this prove that my infection is still live.

It's this kind of stuff that brings a very astute, educated, and well trained Dr into a 'clinical diagnosis here'. As he said, I'd been sick since the tick bite. I had only 1 positive band on the Quest WB, but it was a significant band. I had 2 months Abx and experienced improvement, however it began creeping back up on me when I went OFF Abx.

So that, along w/ a positive band 39 (IgG) tells him that I have an active infection. (along w/ my low CD57 and other lab indicators of infections)
Posted 7/6/2010 3:29 PM (GMT 0)

GWB said...
Did he read it from the manual or did he have it memorize when he told you that you didn't have lyme disease? I'll bet he had it memorized word for word. rolleyes (Excuse my sarcasm. It isn't directed to you, it's directed to these idiots who claim to be infectious disease doctors). So, what did this ID doctor diagnose you as having? Did he tell you why your Igenex test came back consistent with Lyme disease?



Did he tell you why you have "Depersonalization symptoms for 10 years. Brain fog. Trouble comprehending speech and reading, brain fog, Extremely shaky, sexual dysfunction, Floaters, Drop foot (for the last 2 weeks), Paralysis in my hand (drop wrist)..."?

Did you ever get a LLMD referral? I don't recall you mentioning that you've seen a LLMD or even asked for a referral here. Maybe I missed it. If you want to seriously get to the bottom of this ordeal, then you need to see a LLMD, and the sooner the better. It only gets worse from here. Don't play around with this disease by wasting time visiting doctors who don't have a clue about it. I know it seems logical that an ID doctor would have a clue, but sadly, most do not.

Like I said before, if you want a list of organizations that can refer you to and LLMD, just ask, and I along with others here will be glad to send them to you. I believe Dan's Mom and a few other people have a list that they can send to you.

Gary

Thanks Gary,

he just explained to me how the Igenex test was done and he said go to USA (im in Canada) if I want to look further into lyme disease... He didnt ask me about my symptoms or anything, Its like what he said to me was already pre thought out before we spoke. Its like he was just waving me off...
I have a LLMD refferel but its not for another 2 months... I'm looking desperately for a sooner appointment but there is only 1 LLMD in Ontario.. If you guys know any contacts that would be great! I live in London Ontario Canada

You can email me at

[email protected]

thank you so much :)

Jordan
Posted 7/6/2010 9:55 PM (GMT 0)

+Lyme said...
In a recent post, I noted that my new LLMD who happens to be an infectious disease Dr (w/ 20 yrs experience w/ Lyme) , STATED, that regardless of what the CDC states, and regardless of the number of bands Igenex requries for a lab positive infection w/ Lyme, it is the latest consenus that a positive reaction on just one Lyme species specific band (esp 39) diagnosis Lyme. BECAUSE it means that specifically LYME anitbodies are found and you would not have Lyme antibodies w/o having Lyme.

My insurance paid for this test from Quest, which is clearly an inferior test compared to Igenex. However, it DID lead me in the right direction. There are quite a few 'species specific' bands that Quest does not even read. And there are insignificant bands that they do read.

Still -- to anyone w/ insurance, who cannot afford to take the best lab tests from Igenex, I would advise starting w/ your own DR and making sure he/she orders Western blots IgG and IgM and go from there. Also make sure he/she understands that this test MUST be read within 24 hours receiving your blood.

If those results are truly questionable and you still feel you have Lyme, well, then, go on and get what you can afford from Igenex.

My question to my new LLMD was a bit of a stumper: If it is clear that I have Lyme specific antibodies, could this mean I was infected at one time, but no longer have an active infection. How does this prove that my infection is still live.

It's this kind of stuff that brings a very astute, educated, and well trained Dr into a 'clinical diagnosis here'. As he said, I'd been sick since the tick bite. I had only 1 positive band on the Quest WB, but it was a significant band. I had 2 months Abx and experienced improvement, however it began creeping back up on me when I went OFF Abx.

So that, along w/ a positive band 39 (IgG) tells him that I have an active infection. (along w/ my low CD57 and other lab indicators of infections)

Do I have any of those "specific" lyme bands?..I meen i have a IND39 IGG? I'm so out of it its hard for me to process all this stuff going on. I've been in the mental ward for 5 months trying to figure out whats wrong with me... How is CD57 tested? Are there any tests that a regular MD can order too check for lyme other then the Western Blots? I have had like 10 different doctors tell me this isnt lyme disease.. Are my results really THAT convincing of Lyme? Its hard to believe this is something like lyme when proffesional are telling you otherwise ya know?

thanks +Lyme

Jordan
Posted 7/7/2010 3:55 AM (GMT 0)
Optimus, Please check your results against the interpretations CajunGril posted above. Just a couple notes (that's why you need to check ALL of them out yourself)

#s 21-25 are lyme specific.
#s 83 and 93 are species specific

AMongst others (sorry, I am a Lymebrain tonite!)

You have positive lab results from Igenex for Lyme. From EVERYTHING, repeat EVERYTHING I studied on the WB, there are only false positives in this case: When a person has several positive results on bands of no sigificance. Makes no sense!

Even IF this test is accurate, those of us here cannot diagnose your Lyme. You must see a LLMD and show him/her the results of this test, because you have significant reactions.

Again, set your test results beside the WB interpretations CG has laid out above. I believe you'll find some important reasons to visit a LLMD.
Posted 7/12/2011 7:13 PM (GMT 0)

GWB said...

optimusrhyme said...
Thank you so much Razzle.

Does anyone know of a Lyme Literate Doctor in Canada Ontario?

If you will click my email icon and send me an email I will send you some information on getting LLMD referrals in your area.

Gary

_________________________________________________________________

Hi Gary, my husband has MS and we are also looking for LLMD's in the Toronto area. If you have any information, I would greatly appreciate it.

Thanks!

Wifeofms
Posted 7/12/2011 8:56 PM (GMT 0)
Hi Wife of ms!
Welcome to our forum!! I am so sorry that you have a need to be here, but you have come to a great place!! I am confident that you will find us to be a caring, helpful and understanding group!

If you haven't already, it would be beneficial 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 relevant information and informative links that have been put together by our members here! We also have a pretty good search function on this forum to help you narrow down your search for information from past posts.

This is a old thread, and I don't know if Gary will notice this thread being re-activated. If you will scroll up to Gary's post, you will see a small envelope below his screen name, Click on that and it will bring up your email program with his email address in it. Just be sure to introduce yourself a bit (ie - a new member on Healing Well).

I do know that some Canadians travel to the US to be seen by a LLMD. If that becomes something you would liek to look into here are a few things you can do to find a LLMD here in the US:
For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:[email protected]

You can email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) doctor. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

Be sure to post any questions or vent a few frustrations here!! We are here to help as much as we can!
Posted 8/7/2011 7:34 PM (GMT 0)
Thank you so much for all the info!
Posted 8/7/2011 11:32 PM (GMT 0)
Did you find a LLMD?
Posted 8/8/2011 12:36 AM (GMT 0)
Optimus, please do yourself a favor and do not listen to this infectious disease dr. I myself went an id dr. He was very nice and treated me but did not know the disease. I wasted a year of my life with him and despite having neuraliga pain in my face and lesions on my brain, he kept testing me for syphillus. Their protocol does not provide for proper lyme or coinfection testing or treatment. Run to an LLMD. you will be so glad you did. I am !
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