Hubby & I were told by a quasi-LL Pedduck that "Everyone tests positive at Igenex" and that "Dr.J Txs every child with massive IV ABX".
I thought it might be helpful to have an idea as to how many out there have in fact had negative results from Igenex. (Thanks for the idea, Cave )
Thanks in advance for your input!
Ali
Posted by Lymetoo (Member # 743) on :
ME!!!!
Posted by Lymeindunkirk (Member # 7118) on :
I've heard that before as well. My huband and son both tested positive with IGENEX. I myself have never actually tested positive with IGENEX. I've been tested four times with IGENEX and each time its different. At my sickest point the test was totally indertermint. The first test showed a few positives for some bands, the second test showed more positives and of course the third test showed even more positives. The fourth test was a year and a half into treatment and my symptoms were much worse. So, my opinion, not everyone tests positive.
Posted by Marcie (Member # 10070) on :
My first Igenex test was neg. for IGG and IGM, but I did have some positive bands. My second one that I just had done in the begining of January was positive IGM and neg. IGG. Hope this helps Marcie
Posted by duke77 (Member # 5051) on :
My first WB from Igenex was negative just one or two ind. on a few bands. The second one after six months was almost CDC positive and band 31 was double positive. Most ducks use the saying "Everyone tests positive from Igenex". This is just not true, Nick Harris says something like 65% of the tests are positive. Igenex gets most of their blood through Lyme Docs who already suspect or have diagnosised Lyme in the patient already. So 65% is low in my opinion.
Posted by Sojourner (Member # 9424) on :
Hi Ali, I can give you three! My husband, my daughter and my sister. All three had negative CDC and Igenex results---they did have those suspicious bands, though.
All three had neuro symptoms, all three have experienced herxheimers, all three have experienced improvements in their symptoms.
I am truly sorry you are having to go through this. I hope you get this all staightened out and get your husband on board with a good doc.
If I may, what is it that your husband is so afraid of? Is it antibiotics? Our oldest daughter (not the one being treated now) was on over three months of prophylactic antibiotics for recurring ear infections.
Funny how this didn't worry us at all--we got no guidance about replenishing her gut flora or monitoring her liver. Oh, but this was a mainstream ENT, not a crazy lyme doc. What a stupid double standard.
Even if your hubby won't beleive an Igenex result, it might just do you some good to have one done and see what turns up. It's not too costly.
Again, I wish you well
Posted by lymeout (Member # 8045) on :
My daughter's first test was negative, subsequent ones have been positive. We had an ID doc say the same thing to us.
Posted by Lisianthus (Member # 6631) on :
Me --- Recently Neg. (two other times IND)
My husband, my 3 sons, & father ---- IND
Mother --- Pos.
All of us had specific bands.
Posted by hshbmom (Member # 9478) on :
Hi Ali,
2 negative tests....my daughter & I
We did have a few significant positive or indeterminate bands, but were considered as CDC and Igenex negative. These tests were in the summer of 2006.
My husband and I had a positive Western Blot tests from Bowen lab recently...it was the MarDx test that doesn't report the 31 or 24 kDa bands. 3 children were negative on this test, although I ws told they were all CDC positive.
All 6 of my children have symptoms and are being treated. My LLMD thinks I passed the disease to them during pregnancy.
It's strange that it's popped up in everyone in the past 7 months.
Nancy
Posted by valymemom (Member # 7076) on :
For many years now my husband has had the most symptoms. His Igenex test was negative so my llmd wanted him to do a urine challenge test but he didn't and has not been treated.
Posted by Serenity (Member # 7642) on :
My husband has had two negative tests from Igenex. He has a clinical diagnoses and has been responding to treatment much in the same way my CDC positve daughter (who found the deer tick on her) does.
Posted by lymeladyinNY (Member # 10235) on :
My Igenex tests have come back with some positive and IND bands but the overall result has been "negative". My LLMD interpreted the results as positive.
My first CD-57 came back 12! The second came back 34. I think CD-57 is a very good indicator of how sick you truly are.
Posted by breathwork (Member # 567) on :
My first WB from Igenex was negative...then after antibiotics it returned positive...
Posted by Allie (Member # 10778) on :
My hand is up.
I had 1 ind (IGG ind/IGM negative) and 1 negative (both IGG and IGM negative) Igenex tests. I have tons of bands come up 'ind'.
Allie
Posted by Lisianthus (Member # 6631) on :
BTW -- My nephew sees Dr. J, and Dr. J has never put him on IV ABX!
Posted by lpkayak (Member # 5230) on :
me
Posted by trueblue (Member # 7348) on :
*raises hand* from Igenex and a bunch of other labs over 13 years
My only truly positive WB was almost 3 years into treatment and I think I got that one from BB northamerican, I don't think Igenex was operating yet.
The best I ever did from Igenex was close to IND, a few + bands and a few IND.
I really don't test well. Perhaps if it had been multiple choice???
Posted by MariaA (Member # 9128) on :
and let's remember that a lot of people who test negative will assume that they don't have Lyme, so you're not going to find the majority of the 'negatives' here on Lymenet.
Posted by sickandtiredofbeingsandt (Member # 10189) on :
My IGeneX test was negative and CDC negative but I had positive bands and two IND. The doctor said that even though the test says it's negative, the positive and IND bands are very important and given my symptoms, treatment for Lyme is called for.
I think what needs to change is the criteria for what they consider "positive". If you have pluses and even INDs, you have been exposed. It should be either positive is any pluses or if all minuses, then it's negative. It's not rocket science.
Posted by tory2457 (Member # 10384) on :
Count me in for both negative IgG and IgM- IgeneX and CDC.
Also very low CD57 (21), but guessing I've "owned" these bugs for 20 years!
I say thanks for all the good medical care and insurance payouts all those years treating the wrong disease!
Posted by grace1 (Member # 10347) on :
I had a tick engorged on my leg, had a bulleye rash for a month, yet tested negative on Western blots at IGeneX.
However, I did receive antibiotics and steroids shortly after the rash for other medical reasons.
Posted by shazdancer (Member # 1436) on :
I never tested with Igenex. I tested CDC positive with Quest. My son tested CDC positive at the local hospital lab.
Does your doc want to argue with those results?
And I asked Dr. J about IV for my son, mostly because I have school people looking over my shoulder and saying he should have IV. Dr. J said no. And if memory serves, no mention of IV has been made in the current medical board case, either.
Ignorant duck. Shaz
Posted by cantgiveupyet (Member # 8165) on :
me both times...2nd time more IND bands then the first but still a big negative!!
CD57 of a 10 that went up to a 42 a within a few months.
I went to an ID dr that also said all Igenex gets positive results....even if you would send water there it would be positive.
i told him that I didnt get a positive but IND, and he said well there you go something showed up!
Posted by Ann in CA (Member # 97) on :
I have had several positives from Igenix over the years, but I have also had a couple of negatives after I have been on abx for awhile.
I sincerely believe they are the best lab and if you are negative, you'll get a negative result. That doesn't necessarily mean the lyme is gone. So far, mine has always come back if I stay off abx long enough. Then I eventually test positive again.
Ann
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by cantgiveupyet: i told him that I didnt get a positive but IND, and he said well there you go something showed up!
Sheesh!
Posted by AP (Member # 8430) on :
That'd be me... but I had a positive test through another lab... too sick to remember right now. Not MDL.
Posted by Ruth Ruth (Member # 11059) on :
No antibiotics prior Steriods prior Possible infection as teenager (bells palsy 1980) New "bite" & symptom onset 4 months prior to tests 2/15/2006
WESTERN BLOT {I don't have a clue what these mean}
IGENEX IGM RESULT NEGATIVE CDC/NYS RESULT NEGATIVE 39/41 IND all other bands "-"
IGENEX IGG RESULT NEGATIVE CDC/NYS RESULT NEGATIVE 23-25/31/34/39 IND 41 ++ 58 + all other bands "-"
MULTIPLEX B. BURGDORFERI (PCR) Genomic NEGATIVE Plasmid NEGATIVE
Posted by bettyg (Member # 6147) on :
hubby's were NEGATIVE
mine were both positive!
Posted by Michelle M (Member # 7200) on :
I was CDC positive, as well as my daughter.
However, your Ped Duck should know this, from public testimony of the lab director:
"For the year 2003, just to give you an idea, we had tested 698 patients suspected of Lyme disease. Three hundred and ninety-four were positive by either Western blot or antigen test or PCR. If we had gone by the CDC criteria only, we would have missed 70 percent of this 394 cases."
In other words, 56% of the Lyme disease tests performed by IGeneX Laboratory in 2003 were positive.
So that's about half. A far cry from "all."
Michelle
Posted by buckfever (Member # 9876) on :
I too was Neg through Igenex, w/1 +,2 ind bands IGG and 2/+ and 2 ind IGM . Good enough to indicate infection to 2 LLMD's , but not good enough for cdc or other ducs !!!
Posted by groovy2 (Member # 6304) on :
I was- Ind - from Igenix--I had been sick 18 yrs before the WB was done--Jay--
Posted by liz dobell (Member # 8078) on :
i got CDC NEGATIVE overall for IgG & EQUIVICAL for IgM (both from IGENIX)
+/- on bands 23-25,31 34, 39 & +++ on 41 & 45
responding well to abx
Posted by Virginia of Yore (Member # 3269) on :
I had positive tests from Igenex when flaring with symptoms, and negative tests results from them when tests samples were taken at a time with no bothersome symptoms--both times tests were taken while on antibiotics, and I have been on them long term. I think they are a good lab, but certain NIH docs may be purposely trying to discredit them to mainstream docs, hence the negative comments... They don't want a lab around that is making their labs look less competent.
Also, I don't think they want us finding any proof of a disease they want to deny treatment for, whether to save money or their reputations.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Virginia of Yore: I think they are a good lab, but certain NIH docs may be purposely trying to discredit them to mainstream docs, hence the negative comments... They don't want a lab around that is making their labs look less competent.
Also, I don't think they want us finding any proof of a disease they want to deny treatment for, whether to save money or their reputations.
Absolutely my opinion as well!
Posted by wenan (Member # 10993) on :
wow,I am so glad to see this. I have been putting
myself through the ringer - Igenex- IGG?? I think,
was the the one that had all starred bands
indeterminate with one positive and the other IGM
(I may have these mixed up) had one positive and
the rest negative. I have felt as if I am making
all of this up. My doc feels I have Lyme but I
think she is afraid to go all the way and say
actually that I have it, especially since I cannot
tolerate antibiotics right now and we are working
on getting my liver function better. But I am so
grateful to hear from everyone- Maybe I'm not
going crazy!
Posted by Lymetoo (Member # 743) on :
Hang in there, wenan! Being in CT doubles your chances of it being Lyme, that's for sure!
Posted by AliG (Member # 9734) on :
I just wanted to thank everyone for all their input! I really appreciate your help. Posted by Andie333 (Member # 7370) on :
Just to add to the list:
I tested CDC positive, but my SO was negative through igenex.
Posted by merrygirl (Member # 12041) on :
I was CDC positive IgM through Quest (go figure).
I was neg through Quest for coinfections.
I have a question-
How many of you tested positive at IgeneX for coinfections compared to regular labs?
I am contemplating sending blood there for co's but I dont want to waste my money.
I know I am coinfected with Toxoplasmosis, which will be treated in the fall per my LLMD.
Thanks, Melissa
Posted by bettyg (Member # 6147) on :
melissa,
here's another lab good for co-infections and much cheaper! i haven't sent anything there ...
ARIZONA LYME/TICK LAB ... excellent for co-infections: bart/babs!
Scott Forsgren or someone stated cost was $250 for babs/bart co-infection testing! vs. igenex's expensive $900 charge for co-infections!
if you are on medicare, they will pay for igenex testing; they did mine!
[ 20. August 2007, 02:38 PM: Message edited by: bettyg ]
Posted by Rianna (Member # 11038) on :
I had a highly positive Igenex (I am from UK) although at the time I was told only 2 people had ever tested positive in the UK with IGENEX - there may be more now. So out of many many tests only 2 positive - therefore the people stating everyone tests positive with igenex are obviously very mis informed.
Rianna
Posted by zil (Member # 12048) on :
I had negative typed on the test result with all the bands listed and my LLD wrote--You are positive. You have two starred bands 34 & 39. (I had a few other with + by it.) The lab made a mistake and typed negative. I called Igenex and finally(after a few days) spoke with a Dr. there and he concurred with my LLD and I am getting a corrected copy. I have been on doxy for 6 wks and now, ceftin. I am improving. Thank goodness my Dr knows what he's reading and doesn't go by the negative or positive the lab types. Liz
Posted by AliG (Member # 9734) on :
Thanks for that Rianna!
So the UK doesn't share the same opinion of IGenex as the US ducks either.
I never added my own negative Igenex to this.
I had some pos bands with Quest. Did Igenex for "more accuracy" for treatment, got NADA, ZILCH, ZIPPO! Went back to Quest testing, got additional positive bands.
GO FIGURE!?!
I'm going to try to figure out if I was Babs-flaring at the time of IGeneX. I was really disappointed. Posted by disturbedme (Member # 12346) on :
*raises hand*
Mine was from Igenex and overall negative.
I only had one positive band.
Posted by chamade (Member # 11472) on :
Negative western blot at igenex(23-25IND, 41IND, 39+ for IGM) and positive IFA
Posted by sixgoofykids (Member # 11141) on :
My daughter was given a clinical diagnosis and has herxed on abx. She had 41 +, and 34 IND from IGeneX.
Posted by susan2health (Member # 10446) on :
Anyone negative on all bands?
Susan
Posted by AliG (Member # 9734) on :
As far as I know, I was. I'll verify Tuesday.
Posted by Michelle M (Member # 7200) on :
CDC positive at IGeneX:
IgM: 18 IND 23-25 ++ 28 + 30 IND 31 +++ 39 IND 41 + 45 IND 58 + 66 + 93 IND
IgG: 23-25 IND 30 IND 31 IND 39 IND 41 IND 45 IND 58 IND 66 IND
(not sure what to make of that IgG!!)
Quest ELISA: Negative
Michelle
Posted by AliG (Member # 9734) on :
SHOW OFF! Posted by Michelle M (Member # 7200) on :
quote:Originally posted by AliG: SHOW OFF!
It's just stunning to me to have so many positive bands and a totally negative ELISA. Also a negative spinal tap.
This blot was about 1.5 years after being infected.
It just goes to show that you can't tell much from them, because in theory my IgG should have turned positive within several months. Yet after a year and a half of infection, "IND" is about the best I could do. Maybe I would have made more antibodies if I hadn't had babesia??? Just a guess... Would love to hear an answer!
Michelle
Posted by kbholley (Member # 12938) on :
I tested Neg. on all bands with the bullseye rash still on my arm.
Brenda-Lee
Posted by improver (Member # 8380) on :
I tested positive in 05 through igenex. But I tested negative a few months ago through igenex and am still sick. I just read the following in one of the brochures from the LDA site called Lyme [r] Primer:
During the first year after a tick bite, less than 65% of patients produce antibodies, and they may not last. By year two, less than 50% of patients still have antibody response.
You can go to the LDA website and print out this brochure. Take it strait to whatever duck has a problem with the idea of testing neg but being positive. But back to the point of this post, I did recently test neg through Igenex and still have lyme.........Rich
Posted by Areneli (Member # 6740) on :
me
Posted by kelmo (Member # 8797) on :
We go to the doctor mentioned in this thread. He has always used his own lab and never sent to IGENEX. He did send some things to Labcorp to help us with expenses. It actually showed positive bands.
I think most of us will test negative on some things at first, then when things get stirred up with treatment, bugs come out of hiding.
Kelly
Posted by hostbody (Member # 12695) on :
My Husband, daughter, and I were postive. My other daughter was negative.
Posted by kbholley (Member # 12938) on :
I just got retested today, I'll let you know what the results are. She still is doubtful about it being LD, because she says its uncommon in our area, but I know its bull.
Posted by tory2457 (Member # 10384) on :
My relative tested Negative through IGeneX....
but, POSITVE, CDC positive for Babesia through Quest!
yup, they called her--immediately.
How is this possible? hmmm!
She fortunately does have a LLMD, and is in treatment! This after being told she has Sojgren's, RA, Fibro,IBS for years!
my oh my oh my!
Posted by AliG (Member # 9734) on :
quote:Originally posted by tory2457:
My relative tested Negative through IGeneX....
but, POSITVE, CDC positive for Babesia through Quest!
That's what I'm talkin' about!
Let those "Everyone tests positive with IGenex" "doctors" explain that!
Even people who are KNOWN to have Lyme & test positive ELSEWHERE can test NEGATIVE AT IGENEX!!
How can they say "everyone tests positive with IGenex"?!!!!!! Posted by Sweetpea's Mom (Member # 12817) on :
Go to this website; http://www.amytan.net/LymeDisease.aspx. This is Amy Tan's website. She talks all about testing. Print out her story and show it to the idiot who said all tests from Igenix come back positive.
Maybe he will learn something.
Posted by tory2457 (Member # 10384) on :
hey AliG, right on!
to go a little deeper, aren't people like her that test positive for a co-infection, but negative for LD enough to insist on "changing the guidelines?"
What does the CDC say for treatment? 6 weeks?
btw, her son (32yo) was tested, he too was negative from IGeneX, but tested positive through Quest for RMSF!
Our local Health Dept called him; said since he doesn't have symptoms, he doesn't have RMSF.!
He does have elevated liver enzymes with other "slight" symptoms...He's also in treatment. His llmd didn't take his positive test result--lightly!
Posted by magaro (Member # 12948) on :
Over 50 doctors later and thanks to my neighbor I went to a new lyme doctor.
My test results were:
IGM WB positive via Igenex and CDC (still don't have the IGG)
The IGM blot report is as follows: 18 + 22 - 23-25 + 28 - 30 - 31 + 34 IND 39 IND 41 ++ 45 - 58 ++ 66 + 73 - 83-93 -
I also have a CD-57 score of 22.
Posted by GardenLymer (Member # 6008) on :
All tests always neg thru IgeneX except FISH (1 out of 2 - the second was neg, although relapse was obvious) ERRRR
Daughter's was neg thru IgeneX also...I tested pos tho thru the old Bowen for Lyme, Babs, and both forms of erlichia.
TBI's are the only disease on the planet where a pos result is good news - in a warped kinda way, lol.
Posted by savebabe (Member # 9847) on :
3 negative tests and 1 positive
Posted by Mike55178 (Member # 11597) on :
I was also considered Negative even by Igenex. I had no IGG bands. But I had a 41+ 58+ and a 39 IND. My LLMD said the 39 and 58 were Lyme specific and with my low CD-57 and all my symptoms concluded I had Lyme.
Posted by Keebler (Member # 12673) on :
After years of severe illness, tested in 1997.
Seizures, severe hyperacusis, fainting, all the CFS sort of stuff. balance problems verified by testing.
WB IgG a few bands, but "negative according to the CDC Criteria" was printed on it.
WB IgM was actually postive according my state's dept. of health band criteria, but equivocal with Igenex and "negative according to the CDC Criteria" was stamped across it.
Postive for Babesia and HME (human monocytic ehrlichia).
So, trying to show my doctor that even our state's dept. of health said lyme was positive even if the CDC said "not"
and with the presence of the co-infections, that lyme was highly likely, anyway . . . well my doctor said "we don't have lyme in this state." Treatment was refused. My file was marked for life.
About ten doctors later, still none in this state who will treat. And, of course, by now, they say "it's burned itself out"
I'm the one burned out.
But, to be fair, I've come across two doctors who have helped me in various ways. Treatment options, money pose restraints.
We desparately need better attention to this.
Posted by peter j (Member # 11825) on :
I've got negative from IgeneX once
Posted by AliG (Member # 9734) on :
Back from LLMD, copy of IGenex results in hand.
I am proof that we should get copies of our bloodwork. My interpretation of our previous conversation was that Igenex came up blank.
IGM 23-25 IND (pos on Quest) 30 + 39 ++ 41 IND (pos on Quest) 66 +
IGG 41 IND (23 pos on Quest)
While still technically considered Negative, I guess that makes me guilty of "showing some positive bands" Posted by Vanilla (Member # 11155) on :
My first Igenex test was negative for LD positive for Babs.
My second Igenex test was positive for LD.
Posted by AliG (Member # 9734) on :
Any ALL negatives bands & pos elsewhere?
Posted by on :
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Perhaps if it had been multiple choice???
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