Need help with Igenex results

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gracietiger
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Date Joined Dec 2008
Total Posts : 129
   Posted 2/6/2009 8:25 PM (GMT -7)   
Hi, I was hoping I could post my IgeneX test results on this forum, as I don't completely understand them and have some questions. It appears, however, that it is negative.

First off, the titer came back at 1:40, which is considered "indeterminate." Greater than 1:80 is considered positive. I don't really understand what indeterminate means though, if 1:80 is positive and my value is quite a bit less than that???

So for the IGM...
All bands were negative except for the **41 kDa, which is indeterminate. So this is considered negative.

For the IGG...
Again, everything is negative except the double starred 31 band, which is Indeterminate. Also, the double starred 41 band is positive in this test.

I am just wondering what this means. The test results that say one double starred positive band may be of clinical significance. Yet it says that two double starred bands are required to be a positive result. So I am just wondering if my results are definitely negative, or if that one positive could be of clinical significance??

Why would same band appear as indeterminate in one test then positive in another test?What could this indicate? Do these tests detect other possible infections as well?

For the people on here who have been diagnosed with lyme, did you meet the required two double starred bands, or the required five bands total for your diagnosis from the IgeneX test?

I hope it is okay that I am posting personal test results. I don't mean to break any rules if that is the case. I am just pretty confused by all this, and because I know that testing is so sensitive anyway, just want to make sure I don't rule out lyme unnecessarily.

Thanks!!!

susan1122
Regular Member


Date Joined Jan 2009
Total Posts : 42
   Posted 2/6/2009 9:03 PM (GMT -7)   
Hi Gracietiger,

I was wondering if you have gone through any treatment yet?

I'm not sure what your test means, but the double star does sound significant. I had a lot of positive bands a few years ago then did a lot of antibiotics and my most recent test sounds more like yours (although I don't have it in front of me).

I've also heard that if you do some antibiotics and then are tested you may get a more positive result. By stirring things up, I guess.

Good luck...I hope someone has better answers than mine.

Sue

gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 2/7/2009 9:10 AM (GMT -7)   
hi susan, thank you.
i have done some reading on what my results may indicate, and it just seems very confusing to me. i am especially confused that band 31 came up indeterminate on the Igg test. it seems that it being negative or positive would make me having lyme's negative or positive, so this indeterminate is really throwing me off. does indeterminate usually mean negative? or does mean that it's possible that the antibodies are there? i am very confused. i have also read a lot of varying comments on the band 41. it seems many people were declared positive for lyme's with just this result and their symptoms. i have also read that a lot of people may test false positive for band 41. but it also seems that there is a difference between igm and igg, that i don't quite understand yet, but that perhaps more people who don't have lyme's would only test false positive on the igm report, which mine was on the igg.

anyways, i am not sure what to make of this. i do know that my symptoms seem like some kind of infectious or viral process. i got sick immediately after being in africa. but i don't have any of the "main" diseases one thinks of after being somewhere like africa, like malaria, etc. i am seeing an infectious disease doc who specializes in chronic fatigue syndrome at stanford, who said i sound a lot like his patients. the only thing is that i don't really suffer from fatigue. plus, i have for the last two years have constantly fluctuating lymph nodes. i went to see an endocrinologist last tuesday, who did an ultrasound of my neck to look for the lymph nodes. she saw nothing. thought i was crazy because i was telling her about how huge they can get. but of course, they were not swollen at all that day. two days later i met with the infectious disease doc who clearly felt three of the nodes quite enlarged. this has been happening for two years --- and does not seem normal to me unless there was some kind of infection my body is trying to fight off. i also have had the swollen joints and very stiff neck, which are not characteristic of some of these "syndromes" i have been diagnosed with.

so i am at a loss.

also, i am wondering one more thing if anyone may help. i was bit by a tick in africa, which was embedded for four days. there are studies out there about lyme's disease existing in west africa, in senegal, in a village not too far from my own in the country just north of senegal. it seems that the western blot lyme's tests are looking for species-specific bands. i am wondering if perhaps this species would not be included in that test, if that is what i might have??? i know it is a different species from what we have here. is it possible that my band 41 would come back positive, but not the species specific ones because i may have another form??

i would so greatly appreciate any insight. i am working with a huge team of docs at stanford right now to figure out what is wrong with me, and i can't afford to just go see one of these really expensive lyme docs if it is impropable that i have it.

thank you so much!!!

susan1122
Regular Member


Date Joined Jan 2009
Total Posts : 42
   Posted 2/7/2009 11:02 AM (GMT -7)   
Hi Gracie,

Well, I have had Lyme disease for years and you would think I'd be better able to describe the differences between IGG and IGM....my brain just doesn't work that well (My husband just said he thinks one, the Igg, maybe, is recognizing new bugs...a current ongoing pattern, whereas the igm recognizes the antibodies from the existing bugs that had been there - we aren't sure though) . But, if I were you I would be concerned that I had Lyme disease. Especially because you had that tick. Lyme disease is all over the world - and recognized near where you were.

I am not saying anything bad about your doc, because I don't know them...but, I would be very wary of infectious disease docs and Lyme disease. What is your docs outlook on Lyme disease? I went to a infectious disease doc once, to get a 2nd opinion. After I had been sick for years and tested positive for Lyme, she said chronic Lyme didn't exist. It was like being in the offices of all those doctors who said it was all in my head. Like she didn't believe I was sick. I cried and never went back.

Are you on antibiotics? It might be really worth while to do abx for a while (a few months?) and then take the Igenix test again. If you have been on them already, how long? When did you get back from Africa?

Were you the one that drank the ratty water? Yuck....I have a rat phobia. lol. Most people do, probably.

Hang in there! One thing about this that also makes me think you have Lyme is that nothing else is showing up positive. Where did you live before Africa and how long where you there?

Sue

Dowa
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Date Joined Sep 2008
Total Posts : 1120
   Posted 2/7/2009 11:24 AM (GMT -7)   
IGM means the exposure is "new" (meaning recent) and IGG means the exposure is "old." (exisiting)That is how it was explained to me. I faxed my Igenex to Dr. C in MO and he said that he believed I had Lyme because of the positive 41. Of course, my doctor here does NOT agreee, so I dont know what I gained and I am with you Gracie, the confusion makes my head spin.  D

gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 2/7/2009 11:40 AM (GMT -7)   
thanks, dowa.
so you have been diagnosed with lyme? are you being treated? has the treatment helped? did you have any indeterminate bands?

i am wondering if anyone also knows what an indeterminate ifa titer means. i just don't understand how things can be indeterminate. i run western blots for my job, and there is a band or there isn't. sometimes it is not as clearly marked, but there is either nothing, being negative, or there is something. so i am not clear on what indeterminate means in this case. i have an indeterminate titer and an indeterminate band 31.

susan, i have not been treated at all. no one knows what is wrong with me!
my infectious disease doc at stanford is AMAZING. i asked about his thoughts on lyme, and he said that he couldn't morally go through an antibiotic regime to treat it, but that he would not discourage me from seeing a llmd. because it is so controversial, i don't really expect doctors to agree to go through antibiotic treatment, especially when a positive and negative result is so disputed. he is also testing me for lyme's, and co-infections, though, so he does believe in it, but i think up to the CDC guidelines.
he specializes in chronic fatigue, and is well-known in that community because he is trialing anti-virals in cfs patients, which seems to have pretty great results. he is testing me for epstein barr and a ton of other viruses as well.

i am interested in what others have to say as well. this is soooooooooooooo confusing!!!!

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 2/7/2009 11:57 AM (GMT -7)   
Hi Gracie,

this all is such a detective work, so confusing;

I read in an article form Burrascano about testing and pos/ neg results that the spirocetes are able to hide themselves not only in tissues after having left the bloodstreams but are also able to build kind of "proteinwall" around them; with this protection measure the immunesystem (our t-cells / killercells) can not detect the antigenes on the spirocetes and therefore are unable to produce antibodies; they just outwit our immune system. BUT the spirocetes do not stay under that kind of "protection cover" forever ( they come out again to make temselves comfortable in our bodies and start getting more...) therefore you may not test positive even though you have Lyme as well as one may get tested positive after or with treatment, besides the assumption that a test can also be negative because the immune system was too week to produce antibodies.

I do not know anything about the bands you are testing for in the states; I only have this text from Burrascano in front of me, translated into German; it is said there (with reference to westrnblod) that the 41 kD-stain appears at first and that there may be possible cross reactions with Treponema pallidum and other spirocete species; maybe you can couter check this and get more infos that may be relevant to your case.

Yeah, I think its possible that the test you got done is not able to detect the antibodies you may have developed form that species in west Africa;
I donĀ“t know if all this is of any help to you.

I keep my fingers crossed that you will get better soon!!! greetings, dorit

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 2/7/2009 12:11 PM (GMT -7)   
Gracie,

they explained the IFA to me as an immunofluorescent antibody test means there is not only a clear yes or no (color / flourescent result or nothing at all) but also something in between (kind of positive but not very intensive). Could probabely fit to indeterminate ifa titer?!
dorit

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 2/7/2009 12:45 PM (GMT -7)   
Gracie: I had four IND and two positives, the two positives being bands 30 and 41. And like I said before, I was told 41 is indicative on Lyme. Fry Lab also said I was positive for bart and ehrlichia but then the doctor that ordered the lab at Frys decided he didnt trust their results. So about a million dollars later, I still dont have a clue. No, I did not do antibiotics because I am immune-compromised, THAT we are sure of, via testing. I had a severe toxic mold exposure. So, I am eating healthy (all organic) and taking some supplements and am looking for a place to move with a sauna available. In all these years of testing and I have done MANY (Igenenx, Fry, Bowen) I still dont know if I have Lyme or not. All this came up after my dog died from Lyme. So, I am not sure how to help with a diagnosis, but I understand your frustration, for sure.   D

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 2/7/2009 12:50 PM (GMT -7)   
Gracie: I forgot to ask, have you ever had your gamma globulin levels checked. Your ID doc can do that. It will  normally be low if you have an ongoing infection. Might be worth a shot.   D

gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 2/7/2009 12:59 PM (GMT -7)   
thank you guys.
dowa, i am sorry you cannot get answers. it is very frustrating. have you noticed improvement through the course of your illness? how long have you been sick? do you have any other diagnoses?
i will request the gamma globulin test. i am quite sure that i have an infection or virus of some kind.

dorit, i do agree that is what indeterminate means. however, it still doesn't make sense to me. if it is even a faint line, that is still something right? there is either nothing or something. that something might not be the really bright line that others have, but what does it mean? i am curious if a lot of people without lyme might also have that line. if that is why it is considered to be indeterminate.

thank you guys so much for your suggestions.

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 2/7/2009 1:30 PM (GMT -7)   
I got sick in Fall 2004, came out to Dallas and did a detox program for one year straight. I came here with a diagnosis of mycotoxicosis (mold-poisoning) and the clinic here was familiar with that. I had mold in my basement and cleaned it myself and ingested it. My whole body took a dive and had  many organs and my brain involved. The symptoms for mold-poisoning are IDENTICAL to Lyme, the entire list. Its wild... So, I had not considered Lyme until my Golden Retriever died of it while I was here. Then, I got googling LD and was amazed. Hence, the first test to Bowen which came out "extrememly high" and the doctor here wasnt sure about Bowen. People from Texas travel to Louisiana I am told because they have no LLMDs here. So I am working with an environmental doctor and he odered Igenex and Fry. As far as other diagnosis besides the mold exposure, I am also extremely allergic and have always been since a young child. I had the genetic testing done and it shows I am unable to detox properly as probably most people with LD. Have you ever had that test done Gracie, to show your detox capabilities? It explains alot and you might want to consider that. Your ID would not be familiar with it as it is primarily done by NDs or EI (environmental illness)  doctors.   D

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 2/7/2009 6:25 PM (GMT -7)   
I am currently suffering from ADD (I swear I had it before my TBI so I can't blame the illness) so I can't get myself to read every little thing on the previous posts. So if I restate anything just ignore.

You seemed to ask why it could be labeled as ind.

It is my assumption and I read somewhere but please don't ask where-I don't remember.


That the western blot is read by a technician. They have a set darkness each band gets. So the darker the band the higher the # and more the *. Since it is done by a human eye, if a band shows up but is not dark enough to equal their 1 they label it ind. Something showed but not dark enough to be a 1. I would even assume a computer could label with #'s too and discern whether the band should be ind. Anyway too, I think when a tech does it, it could be read differently than if a different tech were to read it. It is kind of one of those things like if you have a term paper graded by one teacher and then another teacher they may be graded differently. People perceive things differently.

Another thing, I thought someone on here said that 41 can also be from bartonella. And bart is all over the world too. Especially in poorer areas.

gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 2/7/2009 6:39 PM (GMT -7)   
thank you guys!!!!!!!!

i am thinking i need to see a llmd. seeingstars, you make a very good point about the technician's perception. like i mentioned, i run western gels for a genetics laboratory for work, so when i collect data, it is up to me to decide which bands are present and which ones aren't. sometimes the bands are thick like a marker, and other times they are a little washed out. and probably much like an igenex technician, sometimes i consider those bands positive and sometimes i don't:):) it really depends on whatever will best help the experiment. but in all those cases, something definitely shows up.
i have read on the internet that the band that i have recorded as IND, band 31, is considered highly indicative of lyme's.

i am just really not sure what else could be going on. i told myself, before i really even began researching lyme's, that if it wasn't a tick borne infection, then i give up because there is nothing more it could be.
i know my history of being in africa seems to shout some kind of parasite or virus, but i don't really think anything endemic to africa is even being considered at this point. i have had parasite testing. i don't have any of the "typically known" african diseases, like malaria, sleeping sickness, etc. my infectious disease doc is now testing me for epstein-barr, the herpes viruses, mycoplasma and others like that that are known to lead to chronic fatigue syndrome and such. i am going to see what comes of that, but as of now, i don't think any doctors seem to think my travel to africa is the direct cause of my illness.

the other thing i should consider, i suppose, is that when i returned from africa, about a month before getting sick, i was living in very tick populated areas in maryland and pennsylvania. i am very outdoorsy, so it wouldn't be a suprise if i had gotten a tick. i just don't remember a bite - the only one i know for sure of is that one in africa. which, also interestingly, occurred in my village which is about 50 miles south of a village where there was a big research study that found borrelia in 11% of the people -- only it caused tick relapsing fever, not lyme's.

i really appreciate all of your insights. i suppose i should see a tick doc. even if what i have is a co-infection, it seems like a llmd is the only one willing to help me. they are just so expensive!!! i really don't want to head down that road if my test results make it very unlikely that i have lyme's.

oh, and for your guys with a bit more understanding of the test, do you know about the "indeterminate" titer???? i can understand different bands showing up more dark or light than the others, but i don't understand how the titer can come back IND?

THANK YOU!!!!!!!!

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 2/7/2009 6:45 PM (GMT -7)   
I have to put my 2 cents in (tho it may be only worth 1 cent). I hate titer tests done on immune compromised people. Titers measure the antibodies you have for a certain germ. If your immune system is shut down, how do they expect you to be making antibodies. I JUST DON'T KNOW. This frustrates me.

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 2/8/2009 5:11 AM (GMT -7)   
Hi Gracie,

when I got my first test results back I called the lab and asked them everything I could think off; they said, they call titers which lay close under, exactely on or slightly above the limit from which on the result is considered to be "not negative any more" as intermediate (a borderline - case); they said they would consider contact with the germ more likely than not; we have no standarized tests here, means every lab has its own tests, that is why its often recommended to get tested by two diffenent "ll- labs" to gauge /"confirm" the results; the tests are highly sensitive but the results are not necessarily highly reliable.
greetings; dorit

ticker
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Date Joined Feb 2003
Total Posts : 9208
   Posted 2/8/2009 7:10 AM (GMT -7)   

Hi gracetiger.  What exactly is the titer test you had done that has 1:40 as the result?

As Gracie's Mom posted, the IgM Western Blot shows a more recent infection and the IgG a longer-standing one.  Band 41 is often the first band to show, and band 31 is a Lyme-specific band.  No test is completley reliable, and some people who have Lyme do not test positive.  Were you tested for the co-infections Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma?  This is important.

When Lyme disease is a possibility, I believe the most important thing you can do is see a knowledgeable doctor.  If you need a recommendation, feel free to email me.


gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 2/8/2009 9:03 AM (GMT -7)   
thank you guys. dorit, that is a very good idea to call the lab.
it sounds like i just need to see a llmd. i really don't know how i feel about shelling out all that money if, like in my case, there is such a weak possibility that this is a positive test, but it sounds like the testing is so complicated and others with similarly controversial results have gotten really good results from treatment.

ticker, my infectious disease doc is testing me for all those other bacteria and viruses that you mentioned. or at least i'm quite sure he's testing me for lyme co-infections. he is testing me for like 16 or 18 infections/viruses. if those come back negative, i will be seeing a llmd.

also, the titer that i had was the igenex ifa titer. it says less than 1:40 is negative, greater than 1:80 is positive, and 1:40 is indeterminate. of course, mine was 1:40. this sounds much more negative than positive, but i also don't understand how there can even be an indeterminate. when one does a pregnancy test, the line doesn't come out as a maybe. you're either pregnant or not. so i don't know how these results are a maybe it's there, maybe it's not. in my case, i am especially frustrated that the indeterminate is on the band 31, which i have read is considered one of the strongest indicators of the presence of chronic lyme.
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