posted
I have a serious thought-provoking question. I hope not to be scrutinized for it or bashed for it. Its a genuine concern i have and its not meant to cause waves..but nontheless i feel i should be able to bring it up here.
I am very sick. I am an advocate for lyme since becoming ill so I'm just as passionate about it as all of you. However...
I want to know about Igenex. How did you learn about Igenex. Personally...someone who was sick themselves told me about Igenex and that they are the best. I think that for most of us (not all)that is the same case. I find myself marketing for Igenex to people with cfs, etc all the time to encourage them to check for lyme.
So...how can we be sure igenex is so accurate? We really dont know. We just heard from someone else just like new people are hearing from us. Fact is...do we really know? Can all our doctors be wrong and have this conspiracy that we all think exists regarding lyme? Just because some of us get a positive @ igenex doesnt mean they are right. Just like getting a negative elsewhere doesnt mean they are.
I understand its a clinical diagnosis, but its the same set of symptoms for a few different conditions.
So here's the thing. I want to believe in igenex..i really do. I havea positive test with them myself. BUT, Ive literally taken 6 different lyme tests during different stages of my illnes(other than Igenex)...before and during treatment..a variety of tests...ALL negative. Now...i know that we cant rely on these tests...but lets just say maaaaybe 40% are accurate...then if i take 6 tests at least one should show up positive eventually right????
SO...im CURIOUS...how many of you have taken other lyme tests and they are ALL negative????? I just feel that if (and i speak for myself only) i truly have lyme that statistically at least one test elsewhere would should up positive at some point. I also test negative for coinfections.
Thank you.
Posts: 12 | From Los Angeles | Registered: Jun 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
There have been many discussions regarding the reliability of testing via Igenex labs.
My husband had a positive Elisa (imagine that) from Lab Corp, but did not have a CDC positive
Test from Igenex...Did show a couple of Lyme specific bands though.
Out of 4 neighbors tested thus far through Igenex, I had one neighbor get a completely negative Western Blot through Igenex.
If your question is reliability, then I feel that Igenex does a better job of it than other labs such as Quest/LabCorp, etc.
No test for Lyme disease is completely accurate.
I guess I'd rather use a lab that specializes in tick borne diseases.
Do a search on Igenex here online. This has been hotly debated on this forum.
I had my husband and two small children tested via Igenex.
I wish I had known about Igenex.....before I was tested.
Search this forum and see.......
Then think about all of the other blood work that is done to rule out other possible infections/diseases.
I believe that also counts as part of the "clinical diagnosis".
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Alrighty heres what I see your still sick so am I
I also had Highly possitive western Blot and 3 day urine test and I had all the symptoms. I had 2 strains.
I am on abx's since 2001march, I was bitten 1988 every year through 2001 never had a bullseye.I believe that Igenex is acurate as they can be thats more so than other labs heres why I was tested every year including 1988 thru to 2001 sometmes 3 times a year sometimes 2 times a year and once a year a couple of times always negative for lyme, this was at 4 different hospitals through this period.
Yep I would say Igenex for Lyme is one of your best shots but also priming with abx's helps in a infection thats been in you a while setting the antibodies free and dna ,proteins free from spirochetes, more pieces to find and thats only if your immune responce at that time is working and also how high of a infection your having at that given time.
Now as far as coinfections they last I read only test for two types Babesios, and not mycoplamas,but they do test for hge, RSF,Bart. Iam starting to think some of the best labs for finding off te wall infections is veterinary labs they do it more often.
We need Igenex to test for more types of infections and strains.
But they are one of the best we have, I believe in them.
You may have some other infections? also
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
You obviously are asking good questions. There should be many responses giving you lots of reading explaining why "testing" although flawed is best when done at a lab that tests for all the bands associated with Lyme.
btw, I had my infection for years, and I tested Negative through IgeneX.. Negative IgG and Negative IgM; testing negative is more common than you think. I did however have specific bands that were either positive or IND...again more common than what you might think.
It's for this very reason that Lyme like so many diseases are clinically diagnosed.
I eventually "reacted" to antibiotics! Only people with an infection have reactions to a simple antibiotic. With or without IgeneX, my body confirmed my diagnosis.
hang in there getting well is the most important thing, tory
Posts: 158 | From PA | Registered: Oct 2006
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butchieboo
Unregistered
posted
OK SOsick,
If the other labs don't use the correct protocol whenever they do the WB test then they will consistantly get incorrect results...
Does tha make sense to you?
Look here's the thing....if you don't want to believe in Igenex because...in this world of political,industrial etc dishonesty...who can one believe...
Try this one....from one lymie to another...
TWICE I have had my blood drawn on the same day and sent to two different labs...one was quest and the other was either Igenex or Stoneybrook...
On the one hand the test that went to Igenex first went thru Labcorp...they (at the time of my first test)never actually did the WB and would forward it to Igenex labs...this was in 07.
So anyone who had WB performed by Labcorp(previously ROCHE biomedical) would in FACT have had the test done by Igenex.
To get back to my point....on both of these simultaneous blood draws utilizing two different labs... The bloodwork sent to Igenex and Stoneybrook labs directly came back IGG and IGM CDC positive for lyme disease... The same blood sent to competing labs one Quest and the other Smith/Kline beecham came back NEGATIVE for lyme.
WHY?...I don't know....but it seems kinda suspicious to me!
Consequently any and all the blood tests I have ever had done in between 97 to present and either sent thru a hospital lab or any other lab other than Igenex or Stoneybrook have came back negative....
Let me also mention that ONE test I had done thru Stoneybrook lab back between 99 and 2001 came back negative.....
This should tell you that even Igenex or Stoneybrook will at sometime(depending on when your blood is drawn)come back negative...
It's the nature of this disease and it's ability to hide from detection.
The examples above SHOULD make you realize that there IS something wrong with the other laboratories.....
If you prefer...you can believe in a great conspiracy... On the one hand the labs giving out negative results because they are in the Steere Camp....
On the other hand Igenex, Stoneybrook and MDL labs giving out POSITIVE results because they happen to line up PRO-ILADS and company.
If I choose to believe all labs other than Igenex, Stoneybrook and MDL are accurate and
correct then I would consistently get a Negative result and remain sick and get sicker because I would never get any meds prescribed to
me(even though the clinician I may be seeing at the time is supposed to make a CLINICAL diagnosis).
NO THANKS!
You'll have to be the judge of your own health. My examples SHOULD be enough to convince ANYONE that SOMETHING is wrong.
IF Igenex,Stoneybrook or MDL are conspiring to send out POSITIVE results because they are in line with ILADS...then I for one will continue to go to these three labs.
WHY?
Because in all cases whenever I have been drawn I was experiencing lyme(co-infection/TBD) symptoms.
The doctor or college of medicine REFUSED to make a CLINICAL decision and in one case at the VA got back a positive result and mysteriously had it changed to a NEGATIVE result somehow!
Why would this happen?
Precisely what you suggest...conspiratorial actions and reactions keeping the patient (in either conspiracy theory) a pawn in this big game of money/medicine.
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I have never tested positive at the regular labs. But in April, the one llmd that i see ran his usual panel thru quest and I did get a positive band 41 IGG. And my mycoplasm pneumonia was also high on IGG, so this might cross react with that, i dunno.
My 2nd Igenex test had IND on all lyme bands, i havent been able to get a dr to run another lyme WB thru Igenex but i sure hope one of these days i get a positive.
the thing i find odd, is how some of the tests not just for lyme thru the other labs are recorded in numerical values, and if it is under their cutoff for positive then you dont have it.
Like the Elisa....in my opinion it should be a 0 if we were never exposed.
Another LLMD I saw said he had a patient test positve on the WB did not have lyme, but their was a cross reaction to the other spirochetes in his body.
I dont really know what to believe either, as so many diseases have similar symptoms...and yeast can also cause a similar herx reaction when you take the abx.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
Sosick, You get false negatives based on where the disease is at that stage. Also labs that test for it less frequently or have new people performing the test ( human error is very high because western blots need to be extremly accurate. I tested negative or ignex.. or so my neurologist told me and a week later had LabCopr give me all positive results including CDC positive.
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
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posted
I may be wrong, but I thought the reason Igenix was more accurate is because they test for more bands. The other labs don't test enough bands. Am I completely off my rocker, lol?
Posts: 83 | From us | Registered: Nov 2006
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I thought that maybe maybe the reason IGenex is different/better than conventional labs is because more than one strain of Bb is included in each band. There are lots of subtypes of Bb and they don't all produce the exact same antigen.
So, they mix different strains together. For example, there is the KDa 41 band. This is the molecular weight of a DNA/RNA/amino acid (don't know which) of a part of the antigen. Just because the molecular weight is 41 KDa, doesn't mean that there aren't differences in the DNA/RNA/amino acid sequence. Other labs just use one strain.
The measure is the amount of binding between the antibody in your blood and the antigen coded on the plate. Or something like that. The more binding, the more antibody someone has. You'd be more likely to bind if the antibody you have actually has a match on the plate.
Does any one know if this is the case? I hope that makes sense...
Allie
Posts: 300 | From Northeast | Registered: Dec 2006
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
I just heard an Igenex VP speak about their testing at the New Haven Symposium. Before I forget - it is Igenex labs who are still trying to find a better test for these infections. They continue to research.
The bio of this speaker says this person joined Harvard's Department of Tropical Medicine as a research fellow and worked on development of molecular biology tools for diagnosing parasitic disease.....now with Igenex working to develop technologies for diagnosis of infectious disease.
Igenex is CLIA certified. Medicare approved. New York State approved. California approved.
FDA approval is not required.
The lab undergoes bi-yearly inspections and yearly inspections of the home brew tests.
And of course the specific antibodies of importance: 31 kDa (osp A) & 34 kDa (osp B) are only included in testing done by Igenex.......not the commercial labs our docs send our bloodwork to
I can't explain what all the powerpoint slides mean in the notebook but study/statistics and work toward sensitivity and specificity in testing is their priority.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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bettyg
Unregistered
posted
so sick, looks like you are a regular member so i won't send you my newbie links/advise, etc.
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
In the last 8 years I've had 4 negative tests from Lab Corp and 1 IgM highly positive with Igenex. I'm 100% no doubt about it I have lyme.
The only other possiblity is....I'm a nut case, and my mind/body has been faking all these sx for years. I used to be normal, so I recall.
Tested negative for all other co-infections. Many times from Lab Corp and once from Igenex. Don't buy that result at all.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
SOsick,
You are thinking about the probability wrong. Igenix is more sensitive. So the test will find more positives in people that are more likely to get false negatives from other labs.
Think about it as you being one of the people that will be getting false negatives at the other lab. Because of the strain of your infection, or the length of your infection, or something else.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Thank you everyone. IF igenex is truly the best...why wouldnt other labs mimick their testing or at least TEST MORE BANDS? Wouldnt that help them make more $ if they did?
Also....for those that are symptomatic and received a CFS diagnosis. I KNOW CFS is only a cluster of symptoms....so most likely it is Lyme. Buttttt....that doesnt mean that all with CFS have lyme.
I believe in CFS as does the Center for Disease Control. CFS and lyme have nearly the same symptoms (as does candida, etc)SO...yes someone w/ cfs MIGHT have lyme..but in the same context someone with only an igenex pos test may in fact truly just have cfs.
I dont know which is worse.
Anyhow..thanks again for all your input and deep thinking on the matter. I just dont wanna assume that just cuz i got an positive igenex that this is ANY more credible than getting a negative elsewhere. Know what i mean?
Thx Betty..ive got lots of info already.
SoSick
Posts: 12 | From Los Angeles | Registered: Jun 2007
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Aniek explained it well.
I think this is interesting: a year ago I insisted our 25 year old and my hubby be tested thru Igenex because the other three family members have lyme.
My 25 year old alarmed me 'cause his cheeks were red (slapped) constantly. Upon physical exam besides the cheeks, he only had the crescent markings in his throat that Dr. B. looks for. He tested positve IGg.
He refused to believe he could have lyme. One year later he has monthly sinus problems and now GI problems.
My hubby who has the most symptoms (of three infections) tested negative with Igenex. In the year since testing he has added chronic sinus problems and arthritic hip to his other ten or so symptoms.
I understand that not all with chronic fatigue have underlying tick-borne infections - but I would believe/act on the positive from Igenex and I believe our llmds would also.
Over a year ago local physician started testing his CFS/fibo patients with Igenex and found over 50% tested positive so he has changed his treatment of these patients.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
the other labs wont test the other bands because they were used in the vaccine. So therefore would cause a false positive, even though many did NOT get this vaccine.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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butchieboo
Unregistered
posted
Sosick, I don't know why my post did'nt convince you that something is fishy with the other labs.
Also NO, the labs that give out false negatives make more money that way because they are in bed with the IDSA,big pharma,the AMA,HMOs and the Steere camp.
If a patient is negative for lyme then the doctors can cite the negative results as a reason not to treat for lyme. They are then free to treat every seperate symptom the patient is manifesting. More symptoms=more medications more money for big pharma instead of treating the cause=one or two scripts of antibiotics.
The negative results help the IDSA,CDC and Steere camp by downplaying the seriousness epidemic type numbers of this disease.
The negative results help the HMO's save money by not treating lyme disease...the multi symptoms treated and the money paid for the multiple scripts are then bounced back to the HMO's,labs and ama ducks from big pharma.
As far as CFS is concerned....it could very well be that ALL CFS is caused by a TBD... If you ask any duck what causes CFS they will tell you they don't know...so....why not a TBD?
the same applies IMHO to MS,ALS,FM,Parkinsons,etc and so one...even Rheumatoid arthritis... If one strain of BB can cause "lyme arthritis" why not a similar strain causeing Rehumatoid arthritis...
I have osteo and DJD(degenerative joint disease{and ok what is that and where does IT come from}?).
Are all diseases known to man caused by a tick or a TBD....probably not however...I tend to lean toward baterial or viral answers to all of mankinds woes...
I mean even mental illness...some of which I have manifested from time to time were caused by my neuroborreliosis...
and others have died from dimentia later to be discovered that they had spirochetes in their brains....
I thought that maybe maybe the reason IGenex is different/better than conventional labs is because more than one strain of Bb is included in each band. There are lots of subtypes of Bb and they don't all produce the exact same antigen.
So, they mix different strains together. For example, there is the KDa 41 band. This is the molecular weight of a DNA/RNA/amino acid (don't know which) of a part of the antigen. Just because the molecular weight is 41 KDa, doesn't mean that there aren't differences in the DNA/RNA/amino acid sequence. Other labs just use one strain.
Interesting point about the way these antigens might vary from strain to strain despite the same molecular weight, I hadn't thought about that. The way I've heard it explained is that different strains express antigens differently in terms of relative quantity of each, which is a separate issue I guess.
Other labs use just one strain - B31. B31 has an antigen profile that tends to produce positives in people with an arthritic strain.
Igenex uses 2 strains - B31 and 297. Strain 297 is a neuroinvasive strain, it was cultured from the cerebrospinal fluid of a patient in Connecticut in the 1980s - by Steere, I believe.
Adding strain 297 allows the Igenex test to represent all antigens equally, rather than favoring the ones that are expressed more by an arthritic strain. This means picking up more neuro cases.
So yes, in addition to passing all necessary certification requirements, right now Igenex has better methods to detect Lyme disease than other labs. The fact that the average doctor doesn't understand this isn't surprising (you don't have to believe in "conspiracies"); it's simply because the overwhelming majority of doctors don't have time to read the scientific literature and understand the importance of using multiple strains to detect neuro lyme, the way the Igenex Western blot does.
I wonder why so many posts that question Igenex begin with a plea to not be bashed. Why would anyone bash you, SOsick, for asking a question? We're reasonable folks here and happy to provide information.
Posts: 621 | From US | Registered: Jun 2006
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posted
The finish line is health. I'm with you, in that there are other things that should be taken into consideration(mold, heavy metals, ...so on).
But, there are many people who got better from the abx, so those people reached the finish line and I doubt they really care about the details at this point(hell, there can be many other bacterial infections that haven't been discovered and we just group them under 'Lyme' here). Also, many different strains that cause different symptoms.
-------------------- Never walk through a cornfield backwards.
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Valymemom said,
quote:Over a year ago local physician started testing his CFS/fibro patients with Igenex and found over 50% tested positive so he has changed his treatment of these patients.
I happen to be one of those in that practice and my health has improved a lot since I began my treatment for Lyme.
I still test negative on even Igenex, but I've been ill so long (40+ years) that I no longer make antibodies. I have a clinical dx of Lyme, based on my history, symptoms, and now my response to Lyme treatment protocol.
The best indicator is when people who see me once a year comment to me on how much better they think I am doing!
That's significant to me, especially since these are almost total strangers who recognize my scooter, not necessarily me, from past years.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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