posted
I saw dr Patricia C @9 Neuro ) Stonybrook in NY. She took one look at my Igenix results and said. " They are a terrible lab ". Quoted some test they screwed up and insisted on tests done at Stonybrrok labs. This is the second DR over a few years that slams Igenix. Anybody else???
Posts: 355 | From NY | Registered: Jan 2006
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posted
I second your concern -- where is this coming from? This lab has their CLIA certification, so what the hell are these doctors talking about? I think they are just slandering without being educated on the issues.
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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posted
I think it must have to do with money, insurance and the system.
If I were an independently wealthy person who did not have to worry about insurance and the system, I would have no qualms whatsoever
About how the labs I've used like Genova, Igenex, Fry and others don't take insurance.
It is problematic when I think of why on earth DON'T these labs take insurance???
Just because I pay for the lab work out of my pocket doesn't mean I am buying a diagnosis.
If all things were fair, it simply means I am going to an expert lab on certain things lyme.
Because the mainstream is so mainstream and caught up in the system of insurance as if insurance actually dictates what lab is a valid lab, mainstream is working under convoluted premises.
posted
Unfortunately, insurance companies dictate A LOT of things! Things they know nothing about.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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ralph
Unregistered
posted
IME some docs that know nothing about it will slam it. Seems that they are not in a learning mode.
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I encounter this all the time.
Usually what it means it this:
The doctor doesn't actually know anything about lyme disease testing or the science of western blots.
If you felt like amusing yourself, you could ask the doctor, "So, Dr. X, what bands, to your mind, would be most indicative of possible infection?"
It would have to be seriously side-splitting to watch them fumble about, change the subject, wax eloquent about the ELISA needing to be positive first, blah blah blah, anything to cover for the fact that they actually don't have a clue.
Yet they criticize. Without the first notion of what they're even talking about.
I've always wanted to do this but almost don't have the heart. I am almost embarrassed for them. It is easier to repeat canned IDSA rubbish than it is to invest some time learning facts.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
quote: I saw dr Patricia C @9 Neuro ) Stonybrook in NY. She took one look at my Igenix results and said. " They are a terrible lab ". Quoted some test they screwed up and insisted on tests done at Stonybrrok labs. This is the second DR over a few years that slams Igenix. Anybody else???
1. Neurologist
I agree with Lymetoo. The American Assoc. of Neurologists (or some derivation of that), just published lyme treatment/dx guidelines re-iterating IDSA position. It happened last year, and there is info on this site about it. Some of these guideline writers also are writers for the IDSA guidelines. Talk about infiltration!
2. A very long time ago there was some article in the New York Times about this lab, certainly prompted by business interests (the usual...Forbes, Yale, bla bla) that casted aspersions on their lab. This prompted a big investigation, but they passed with flying colors.
So the "critics" always mention the first part, but neglect to honor the second part of "clean bill of health". Sin of omission.
There also was some casual survey, where blind samples were sent, to see if they could identify lyme. Whoever sent the samples reported "failure".
Unfortunately, the samples had been collected and shipped improperly, so results were questionable. Plus, the senders/testers had vested interests in the results being negative.
So the "critics" always mention the first part, but neglect to honor the second part. Sin of omission.
These happenings have been mentioned many years ago on this forum, but I dont have time to search.
Neuros are mostly IDSA pawns, too. They believe what IDSA is saying because of referrent power, and now they believe their own professional organization, which echoes IDSA.
Same old disinformation and propaganda campaign being disseminated.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Funny Michelle!
Well, if you really think about it, it's not funny but sad. I'd love to put a duck on the spot like that.
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
Coyle is well known as a Steere groupie. Anyone who goes to Stonybrook for anything tickborne disease related is asking for this kind of baloney.
Wasn't she a co-author or an earlier edition of the IDSA guidelines?
Unless you have to go there for some reason, I would bash her back. Tell her that institution is infamous for failures with lyme disease. And BTW, Dattwyler used to work at Stonybrook, as the head of the lyme flat earth society, but moved to Valhalla to be with his buddy Wormser (aka Dr. Death).
The tests that Igenex supposedly screwed up were in connection with Klempner's study in which he said no treatment helped chronic lyme. They intentionally mishandled the samples, so as to discredit Igenex. It was a total frame up.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
The CDC tried to shut them down a few years ago. They inspected the heck out of Igenix for weeks around the spring of 05'. They couldn't find a thing wrong with Igenix procedures and gave them accreditation.
Posts: 649 | From United States | Registered: Dec 2003
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jamescase20
Unregistered
posted
Yes, you pay for your own tests, you took away there control over you. Thats why they dont want igent. around. Time to take back our county folks, they took it. A LONG LONG TIME AGO!
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posted
6T....., you can learn more by doing a search of lymenet archives for either Coyle or Stony Brook. I am never sure how to spell that, whether two words or one. Anyway, that should bring up previous discussions on the place and this person.
You could also contact support groups on Long Island.
Then you could do a search of the Natl Library of Medicine to see what she has published about lyme. Here is the website, and you should put coyle pk +lyme in the search box.
And here is one of those publications, the abstract, which you will notice calls it not chronic lyme, but "post lyme disease":
Neurology. 2003 Jun 24;60(12):1923-30.
Comment in: Neurology. 2003 Jun 24;60(12):1888-9.
Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Krupp LB, Hyman LG, Grimson R, Coyle PK, Melville P, Ahnn S, Dattwyler R, Chandler B.
Department of Neurology, Stony Brook University Medical Center, Stony Brook, NY 11794-8121, USA.
OBJECTIVE: To determine whether post Lyme syndrome (PLS) is antibiotic responsive.
METHODS: The authors conducted a single-center randomized double-masked placebo-controlled trial on 55 patients with Lyme disease with persistent severe fatigue at least 6 or more months after antibiotic therapy. Patients were randomly assigned to receive 28 days of IV ceftriaxone or placebo. The primary clinical outcomes were improvement in fatigue, defined by a change of 0.7 points or more on an 11-item fatigue questionnaire, and improvement in cognitive function (mental speed), defined by a change of 25% or more on a test of reaction time. The primary laboratory outcome was an experimental measure of CSF infection, outer surface protein A (OspA). Outcome data were collected at the 6-month visit.
RESULTS: Patients assigned to ceftriaxone showed improvement in disabling fatigue compared to the placebo group (rate ratio, 3.5; 95% CI, 1.50 to 8.03; p = 0.001). No beneficial treatment effect was observed for cognitive function or the laboratory measure of persistent infection. Four patients, three of whom were on placebo, had adverse events associated with treatment, which required hospitalization.
CONCLUSIONS: Ceftriaxone therapy in patients with PLS with severe fatigue was associated with an improvement in fatigue but not with cognitive function or an experimental laboratory measure of infection in this study. Because fatigue (a nonspecific symptom) was the only outcome that improved and because treatment was associated with adverse events, this study does not support the use of additional antibiotic therapy with parenteral ceftriaxone in post-treatment, persistently fatigued patients with PLS.
PMID: 12821734 [PubMed - indexed for MEDLINE]
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
laurie sm...WOW thats was my take on her. The personality of cardboard !! . Also talked about a lumbar puncture. Seems she gives robotic answers to all. Thanks Lou.
Posts: 355 | From NY | Registered: Jan 2006
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
I had a Lyme doc tell me igenex just spits out positives left and right!
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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quote:Originally posted by Michelle M: If you felt like amusing yourself, you could ask the doctor, "So, Dr. X, what bands, to your mind, would be most indicative of possible infection?"
OH, THAT would be FUN!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I saw a neurologist as well specializing in infectious diseases who told me Igenix is a "bunk" lab. He said Lyme-free blood has been sent there as an experiment that has come back positive. My LLMD swears by Igenix, however.
The whole thing can be so confusing and it's hard to know who to listen to. I hope the medical community will come closer together very soon and hope today's settlement with IDSA will really have an impact.
Posts: 28 | From Northern Virginia | Registered: Oct 2007
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posted
Our Naturopath who works with our LLMD had me take my daughter to a neurologist, but he made it clear it was strictly for a neurological evaluation. Sure enough, the neurologist told me that he had "heard from collegues that Igenex was not a reputable lab" and we should have the lyme tests redone elsewhere. I politely thanked him and thru his advice out the window.
Later I faxed him the part of the "newbie" package that talks about the CDC sending samples to Igenex and the results being consistent.
The naturopath told me that it was really difficult to find neurologists to work with lyme patients without discounting their diagnosis.
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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posted
DR C called me last night and said tests were Neg. They are mailing them to be and I will post them when they arrive....
Posts: 355 | From NY | Registered: Jan 2006
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Peacesoul
Unregistered
posted
quote:Originally posted by richedie: I had a Lyme doc tell me igenex just spits out positives left and right!
as much as I want to believe, I was told he same thing. I was also told the same thing by some government labs.
In the LYME world, I just don't know what to believe anymore.
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quote:Originally posted by 6t5frlane: DR C called me last night and said tests were Neg. They are mailing them to be and I will post them when they arrive....
Good... But this DR C of NY doesn't use Igenex, right?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Hi, Just wanted to say that because of Stony And Dr C I paid for a bunch of MRI's, got DXed with MS, maybe a brain tumor, and of course the usual suspects like depression and psychosis.
It delayed my right diagnosis about 2 years and all the wrong meds just messed my brain up ..
The WB test from stony was borderline .. and the igenex was positive by CDC and the labs criteria. So they don't even care for suspicious results from their own lab.
So .. anybody stay away from those folks, at least for lyme unless u want to end at some shrink.
Arne
Posts: 6 | From Florida, US / Saxony, Germany | Registered: Oct 2007
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posted
Anyone who thinks Igenex spits out positives right and left has not bothered to talk to the people being tested. Look in the lymenet archives if you want proof, read older posts. If the immune system does not produce antibodies, then the test comes back negative. False negative in many cases. Understanding testing is crucial, and having the facts is necessary to have an informed judgement.
This kind of talk is just ignorant babbling. Science is supposed to be based on fact, not opinion, and idle speculation.
And by the way, tests CAN be jiggered to show whatever result is wanted. For instance, Stony Brook changed the cutoff so as to reduce the number of positive results. That used to be the only thing Stony Brook was good at, lyme testing. Now it doesn't even do that right. And the state lab in CA that tests for Babesia duncani (WA-1) also changed their cutoff value for the same reason. Isn't it interesting that this seems to happen with "controversial" diseases that are reportable statewide (like babesia in CA, and lyme nationally)?
Posts: 8430 | From Not available | Registered: Oct 2000
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quote: I had a Lyme doc tell me igenex just spits out positives left and right!
Actually the last time I heard Igenix had reported that something like 66% of the tests are positive. That is bad considering most LLMD that send blood there have already either diagnosised the patients or have a strong suspicion.
Posts: 649 | From United States | Registered: Dec 2003
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quote:Originally posted by 6t5frlane: DR C called me last night and said tests were Neg. They are mailing them to be and I will post them when they arrive....
Good... But this DR C of NY doesn't use Igenex, right?
She uses Stonybrook Labs at their Hospital
Posts: 355 | From NY | Registered: Jan 2006
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posted
I still have NOT received all my tests. I've called them 8 times. No call backs etc. Horrible service. Got through yesterday spoke to Coyle's assistent. Said she would call ne back in 20 minutes. Never did. Called again today and I had to Refresh her memory once again. Mailing what they have back( hopefully )
Posts: 355 | From NY | Registered: Jan 2006
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posted
DR C called me tonight finally. Said the wetern blot was Neg. Could not tell me anything abouit bands??? Also said they FORGOT to include Bab and ehriclia(sp) tests. So I have waited 3 weeks for nothing......DO NOT USE THIS DR !!
Posts: 355 | From NY | Registered: Jan 2006
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Does anyone have positive experiences working with Dr. C?
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
About Igenix results coming back positive for everyone... not true. Mine didn't. Most bands came back indeterminate and by both CDC criteria and Igenix criteria is was reported NEGATIVE.
Because I had tested positive for babesiosis, had a CD57 of 66, and symptoms consistent with Lyme, my LLMD overruled the NEGATIVE results by Igenix and diagnosed me clinically with Lyme.
Posts: 129 | From Virginia | Registered: Feb 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"If you felt like amusing yourself, you could ask the doctor, "So, Dr. X, what bands, to your mind, would be most indicative of possible infection?""
Funny you are, silly girl! HA!
And many years ago.. before Lyme doctors were out there at all... we only had a list of who NOT to go to see.
Then came the fine docs up in NY who got the ball rolling.
This doc mentioned above was on the IDSA guidelines... bad news in MY opinion. RUN, don't walk to your nearest exit.
The worst I think I've heard a doctor say to a patient was ..
"If you send a bottle of coke to Igenex it would test positive."
That is so stupid it is funny!
And it shows how desperate these toads really are to say things like that. By the way.. that duck was sued for millions for not treating a child properly and the child was disabled because of it. Goes to show they NEVER learn and the more guilty they are the MORE they say bad things about others.
And how IGNORANT and WRONG these idiots are! My goodness! Lou is absolutely right and you should listen. Lou knows!
And by the way...
A few things not mentioned above that you may want to consider...
1. IGenex tests blood for exposure to more than one strain of Borrelia (both burgdorferi and STARI)... so they are going to pick up Lyme more often than the other labs that only test for one strain. Plus they simply have a higher quality test... and no one can touch it.
2. One thing that impresses me is that IGenex was started years ago because a few children were sick and their doctors were unable to find out what was wrong with them or help them. One of the parents worked at a lab and began working to see what they could do to help these children.
That is how IGeneX got started. They developed tests to HELP people like you and me.. including their own child. And you know the power of people who are fighting for their children's lives. They are unstoppable.
3. Rather than only take, take, take from patients and bleed them dry... IGeneX gives back to the community in more ways than anyone will ever know. I have found them to be some of the most knowledgeable, scientific, generous and kind bunch of people in the Lyme community. We'd be lost without them.
I'd be dead I do believe if it weren't for them.
4. The reason the lab idiots and ducks say IGeneX is not a good lab is because IGeneX has proven so many of them wrong SO many times in the past. These idiots who have diagnosed you improperly or missed your diagnosis because of the bad tests MUST continue to stand by what they did by saying IGeneX is bad.. because if they stopped their ugly comments... and stopped trying to discredit them 24 hours a day...
They could be sued and loose everything for all the people who were hurt by them.
5. I was at a program one time and I saw one jerky lab guy from a hospital stand up during a Lyme talk by a LLMD and break in and try to convince everyone in the room (about 200 people) that they should NOT use IGeneX. This lab idiot insisted that everyone there should NOT listen to the LLMD either... and should instead go to an infectious disease duck from Hopkins... and use their labs.
I also called another lab idiot one day (VERY angry I was).. who was the head of a hospital lab where the HIGHEST rate of infected ticks are in the country (and there are barely any reported cases there- shameful situation)...
I called when I heard he told a doctor never to use IGexeX because they were not a good lab... after I FINALLY got the doctor to use them to help some patients. Even with positive tests from IGeneX.. they were refused treatment... because of this lab pig know-it-all.
I asked him first where his tests were done for Lyme. He had NO clue.. they were sent out somewhere.. but he wasn't sure where. I asked more lab related questions and they were VERY simple ones.. and he had no clue. Talk about stumbling and bumbling!! And I didn't let up.
Then I asked him if he ever used Igenex.. he hadn't. I asked if he ever read about IgeneX... he hadn't. I asked if he ever contacted them in any way about their tests. He hadn't.
The ONLY thing.. after 1/2 hour on the phone with him that he knew was... there was a big amount of money sitting around for someone who could develop a Lyme test... and he actually knew the amount. So much for a caring situation!@*&%
He didn't know I had heard what he told that doctor concerning IGeneX. But when I was done with him... he knew ALL about IGeneX... and all about how awful the tests were that he was doing... and the consequences of NOT using IGeneX.
My point is... when you are faced with that situation... like I've told folks about how to tell if a doctor knows Lyme or not.... (ask right off the bat their method of treating the cyst form of Lyme. If they bumble and choke and don't know.. walk out immediately... tell them you might come back when they know 1/2 as much as the local residents do about Lyme basics... and don't pay.)
But try to put THEM on the spot immediately if this happens. Like doofy up there said.. ask what bands they think indicate Lyme... and sit back and smile because whatever they come up with is going to be wrong.
Try not to let them slide off easy when they trash our lab. Nail them then and there. Otherwise more folks coming in behind you will suffer.
My neuro, AND my psychopharm looked at the results, didn't bat an eye (both are brilliant men and docs I trust implicitly) and accepted the results without question.
I think some docs have god-complexes about things they don't understand. I had the same thing happen when I saw an ID guy here in Pittsburgh. He was patronizing and worthless.
-------------------- Mal "Ready?"
Zoe "Always." Posts: 36 | From Pittsburgh | Registered: Oct 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
And I am not done.. this stuff is so insane! Grrrrrrrrrr....
Please note...
The IDiot ducks will tell you that IGeneX is not FDA approved and other such garbage.
Truth is.. unless labs are selling their products on the open market for a profit... or parts of their products to make money... they don't need THAT kind of FDA approval that these other labs must have who are in the business to SELL.
It is a trick statement to make the folks who are proving them wrong look bad.
IGeneX actually has all of the many certifications that are required and has done outstanding on their inspections.
I feel that I have to jump in here on this idea from a so-called LLMD:
quote:
Originally posted by richedie: I had a Lyme doc tell me igenex just spits out positives left and right!
I agree with TuTu and everyone else who did as well. Richedie: that was not an LLMD. Not a real one. Are you aware that any doctor can call themselves an LLMD? But for a real one, they need to be also an ILADS doctor.
HOWEVER, I thought IgeneX customer service stunk and I found them to be way too slow.
I had three western blots testing for Lyme, each time took one month, they refused to send or fax a result to my doctor or my nurse case manager, and no one there in admin knew what they were doing. At all.
And they were rude--all of them. And they still wouldn't send a test result! I thought, "Oh yes, everybody should send in all their money and watch it fritter away. Nothin' for it."
Why would my doctor order a blood test if he did not want the result?
Me and my nurse case manager had to call, call, call, call, call, call, call while given the extreme run-around. If she and I hadn't called and called each time, who knows how long it would have taken.
I guess the owner was out of the country. While the cat's away ...?
From what I hear, they fixed the problems.
Plus I had a Lyme IgeneX done 1 1/2 years later. 4 times total I tested negative for Lyme. I tested negative for bart and babs by IgeneX, too.
Yes I do have Lyme, bart and babs. So, no they don't spit out positives left and right.
posted
daise, your personal experience w/igenex brought up my own in my mind reading yours.
4 yrs. ago june 06 i was correctly diagnosed with chronic lyme by my pcp of 26 yrs.
i'd had blood drawn and sent 1st week in may along with clinic's FAX NO. of blood lab and drs. office fax PLUS THEIR COMPLETE SNAIL MAIL ADDRESS.
after 3 wks, i call pcp's nurse asking if my result had come in; nope; nothing on my desk yet.
4 wks. go by and i had to see dr. about something; brought it up AGAIN. this time he called the head person of their blood lab.
clinic lab had NO paperwork showing anything had been sent by THEM TO IGENEX! so they called igenex in calif.
igenex then faxed my results to blood lab and snail mailed my results.
NO ONE ADMITTED TO SCREWING UP since the results were done in TWO weeks; no fax or snail mail copy.
then to boot, when i submitted to iowa's bcbs for reimbursement, they had to send to BLUE since it was OUT OF STATE.
blue sent it to calif. bs office who noticed ONE thing wasn't on there .... drs. diagnosis code. so they called igenex for info.
they didn't know it so calif. bs sent it to igenex to pursue.
so igenex was to call or fax my dr/clinic; who NEVER HEARD FROM THEM EITHER WAY.
igenex then mails this to my clinic pcp, but their administration office intercepts it, and some dumb dumb calls me about it. SHE WOULD NOT PUT A DIAGNOSIS CODE ON IT NOR CALL MY PCP FOR IT!
she sent whole thing to my home; 6 WEEKS AFTER I SENT IT IN FIRST TIME.
i was furious and on phone for 3 straight hours as no one would have a conference call with me and iowa's bcbs, calif. bs, and igenex all on ONE call!
then i was reimbursed for either $34 or $43 after all that work! PU; royal hog wash on that incident!
i'd also called there before; no return phone calls, and they did NOT answer EMAILS; THEY DELETED THEM DUE TO SPAM! ***********************
i have advertised galore for them the last 2 years asking them to send me up to 200 of their blue sheets about w.b. testings and CURRENT PRICE LIST that i hand out at my lyme table when i go places including my 1 month long LIBRARY EXHIBIT IN 07.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Daise..
You complained that the tests take too long.
Good ones do. If you will note the HOLD the MAYO Clinic.. which we've only seen ONE positive test from in 20 years... is now reporting on a test that will take 64 less minutes to do...
BIG whoop if they can't GET IT RIGHT!!!
Well, you get what you pay for. So you need to decide if you want a hot dog.. or prime rib?
I also VERY much understand the waiting is possibly the worst.. especially when you are sick. It makes me nuts. But I don't blame the lab.. as the turn around time for the tests is often 3 weeks or so. Being in CA.. and with local docs not getting info back to folks as soon as it comes in.. which has been a problem for LLMD's because of their patient loads.... this is expected.
Most LLMD's won't make an appointment for a follow up for a month because that is how long it takes to get lab results back.
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