I mentioned this in another person's post, but wanted to bring it up as a separate topic.
Have many members here pushed hard on Igenix to answer crucial questions as to why they pick up so many positives and bands compared to commercial labs.
I am confused and feel they owe the Lyme community clear answers given they are a non-participating lab. Yes, I know many are happy to have "confirmation of their illness" as I was, but the fact the lab has ties to LLMDs and is on the ILADS board does bring up issues.
I'm not trying to start a fire. I just think old and new Lymies deserve a better reply than we're more sensitive or we test for more strains, etc. Igenix has EVERY reason financially to produce more favorable test results so please don't say they don't.
A great example is the Lyme presentation given at the autism conference posted by another member here. It showed each WB band the prevalance of the band in Lyme, syphillis, or normal. This is great, but it's meaningless without so much more info such as what constituted "Lyme positive", were other labs' data included, etc.
I know I"m ill and am dealing with Lyme (or another bacterial infection), but I would sleep better at night if this lab could actually state the mystery strain they test for not found by LabCorp, Quest, MDL, and others. PLEASE PLEASE don't tell me they specialize in tick-borne illnesses and their employees care more. I want facts only.
Am I asking too much? I could come up with 40-50 question easily. I also think it's time to scrap the iND and make a decision one way or the other. Maybe I'm wrong?
Every single day at least one new member comes here asking why a normal lab never found anything.
Igenix said before 75% of their WBs are 'Igenix positive." Wow. THey say this because by the time a patient tested with them they have a narrow pool of ill people and it's logical. Nope, I don't buy into it one bit. Sorry. Tell me again why that same subset of sick people have few to no bands show up at other labs? Precisely why please?
I would love dumbed-down answers that could be posted at all Lyme communities. Igenix is the core of Lyme and w/o better responses, I don't believe our cause will ever move forward. It needs to stop looking like a referral system and unfortunately in Public Health Alert and other places, it exactly seems like this.
Lastly, why did Dr. J stop using Igenix? Anyone know? I'd love to know why Igenix and Clongen stack up, but Clongen in my eyes is just another Igenix with the same ties.
Posted by mojo (Member # 9309) on :
Here is a 'dumbed down' version - only because my Lyme brain can't remember the details.
When the Lyme Vaccine was developed they took out a couple of the bands on the Lyme tests (Western Blot). Igenex added them back in because they are very necessary. They get more positives because they are more accurate than most labs.
It's explained very well in "Cure Unknown", Pam Weintraub's book, but I don't have a copy of it on hand at the moment.
I just know someone will help me out here!
Posted by seekhelp (Member # 15067) on :
Thanks Mojo. Yes, I know about the 31 and 34 band issue. That's not my concern. Omitting these bands seems to have little impact on the overall issue from the results I've seen posted. It's the 'more accurate' comment I need info on. More info is vague in a way. Know what I mean?
I'd like to think every other lab has a bunch of bumbling idiots that can't add 1+1 and don't know how to look at a lab test, but that's unrealistic. It's just an assumption based on no hard facts. Lyme patients are quick to point out the oddities like the flawed Vit D test by Quest and others, but these represent a very small portion of overall business.
Also, does the president of Quest sit on the AMA board? For all I know, he/she does! I doubt it though. When the ties get closer, it requires much more detail on how the issues are handled appropriately and objectively.
Posted by Snailhead (Member # 18091) on :
What mojo said is correct, and I completely understand your questions Seekhelp, I think they are valid.
I can't provide much, but I will say this: my neuro (who dxed me with MS) pooped a pink twinkie when I had my test run through Igenex. He sent me to his recommended choice of an ID. The ID backed up the neuro's view of "even though she's CDC positive it's a false positive" story at the top of his report. But at the bottom, added "you may wish to treat this patient with at least two weeks of IV Rocephin". Talk about talking out of both sides of your mouth.
We then pressed him for his choice of labs to run Lyme Western Blots. It was like pulling teeth, but he finally mumbled, "Well, the CDC's lab, or Igenex." Then he wished me luck and walked out the door. He wouldn't treat me, wanted nothing to do with Lyme. But he uses Igenex. I think that says something, but what do I know.
Posted by Snailhead (Member # 18091) on :
Oh, and they are a Medicare certified lab, and Medicare will pay them directly for their testing. I know this is just alot of random info, but maybe it will help.
If they were doing something that was not on the up and up, they wouldn't pass the Medicare inspection each year.
Posted by bwillis (Member # 18811) on :
The simple answer is how western blots work. Igenex uses confirmed lyme patients ( by CDC standards) for comparison whereas most labs haven't taken the effort to create a data pool to compare to so they compare to the public at hand. This is why it is called a reference lab.
There is controversy even with this because by referring to confirmed data it increases sensitivity but does sacrifice some specificity.
I believe that a gold standard test would solve 90% of all conflict in the world of lyme, it would make everyone happy. If we could say this person has lyme and its chronic or its a new infection or its a reinfection, even the IDSA would be on board, but for right now we are stuck with 1950s technology in testing.
The bill 1179, now before congress could change that because testing is at its core, unfortunately its not being supported very well, politics, economy, ignorance---whatever the reason.
Posted by TF (Member # 14183) on :
This explains Dr. Burrascano's statement on p.7 of his Advanced Topics in Lyme Disease (lyme disease treatment guidelines):
"Because Bb serologies often give inconsistent results, test at well-known reference laboratories."
My LLMD said they are the only lab that uses negative controls.
Other labs only compare results to a person with lyme, but Igenex also compares to a person without lyme.
Plus they have included many species of Borrelia in the development of their test, unlike other labs who only include a few species.
Posted by tcw (Member # 15698) on :
I am not sure what is such a mystery about Igenex - I think that they state somewhere on their website that they prepare their WB panels with strains B31 and 297.
They may or may not pick up more bands on the WB, but they report all the bands that have been correlated to Bb infection. Other labs may pick up those bands on their WB, but they do not report them to you since they are not a determining factor in the +/- results that they provide.
The +/- test criteria that Igenex uses was developed by blind testing of samples from controls and positive samples (possibly culture positive, I do not remember). I believe that the methodology that they used for the analysis and the sensitivity/specificity of the Igenex criteria are on the website also.
You said.. "Yes, I know many are happy to have "confirmation of their illness" as I was, but the fact the lab has ties to LLMDs and is on the ILADS board does bring up issues."
IgeneX- do you know HOW the lab got started?
It was because of a sick little boy. It was because his parents, like many of you that are parents, wanted answers in a medical world that wasn't producing any.
Dr. Nick's son and some other kids were ill. Dr. Nick went on a quest to find out why.
He developed the most sensitive tests because his child's life depended on it.
That was the motivation behind IGeneX. That to me tells much of the story.
As for having connections to LLMD's... that is true.
One reason is because that "little boy" is now a LLMD.
Another reason.. because they support PATIENTS and are doing all they can to HELP us. I've not seen much greater devotion from any company to our cause.
They are a small lab. They don't "sell" their test parts to others to make money like other labs do. They hire researchers... some of the best.. to keep moving forward to develop more and better TBD tests.
And tick borne diseases is their speciality. Period. They don't do CBC's. They don't do a zillion other tests. They are a "speciality" lab.
But the biggest reason is.. they care.
```````````````````````````````````````````````` You said.. "I just think old and new Lymies deserve a better reply than we're more sensitive or we test for more strains, etc."
What part of that don't you understand or like?
They HAVE developed a more sensitive test. Period.
They have developed it to test for more strains. Period.
This is like trying to explain why a prime rib is better than a hot dog.
```````````````````````````````````````````````` You said.. "Igenix has EVERY reason financially to produce more favorable test results so please don't say they don't."
I spoke with Dr. Nick one day about the other labs. He told me they were needed. He said there was NO WAY his little lab could provide services to the nation if the other labs went down.
Basically he doesn't want the "rest" of the business. They do what they do for the patients... not for the profits. Sure.. they are going to make money. No doubt. But that isn't against the law.
And I certainly don't see into their "books"... but I do know they also spend money for research and researchers that is helping the Lyme community.
``````````````````````````````````````````````` You said.. "I would sleep better at night if this lab could actually state the mystery strain they test for not found by LabCorp, Quest, MDL, and others."
It isn't a mystery. I believe I told you this already.. but if not.. it is the "STARI" strain. Southern Tick Associated Rash Illness.
`````````````````````````````````````````````````
You said... "PLEASE PLEASE don't tell me they specialize in tick-borne illnesses and their employees care more. I want facts only."
Why not go to their site and read? Go back in the records online and look at how the original tests were developed and learn about the controversy. Dearbourne, etc. I don't think anyone here can condense all that into a few simple lines for you. At least I can't.
There is 35 years of history going on in play here.. so do yourself a favor and start reading.
Once you have that done, if you still have questions, ask.
````````````````````````````````````````````````
You said.. "I also think it's time to scrap the iND and make a decision one way or the other. Maybe I'm wrong?"
If you would take time to read about how a WB works... you would see the significance of an "IND" reading.
Basically it is like this...
"Johnny, do you finish your supper? Is your plate clean?"
Johnny may have eaten all he could get on his fork... but is the plate "clean"? No. There is stuff on it.
THAT stuff is the IND.
So does Johnny say yes it is "clean".. or does he say no it isn't?
``````````````````````````````````````````````` You said.. "Tell me again why that same subset of sick people have few to no bands show up at other labs? Precisely why please?"
Ok.. if I had an orange detection machine... and I put a tangerine in it... what would be the read out?
The box checked color would be orange. The shape would be round. The juice would be tangy like an orange.
But is it an orange?
NO.
Unless you test for spirochetes and strains using the right "questions"... you won't get the right answers.
Example.. did you know some of the testing "medium" was purchased by a big lab... and to save money it was purchased in bulk from Japan?
It was made to test for the strains found THERE.. not here.
So when you test for a strain not found here... if you have OUR strains.. it won't be detected.
````````````````````````````````````````````````
You said... "I would love dumbed-down answers that could be posted at all Lyme communities. Igenix is the core of Lyme and w/o better responses, I don't believe our cause will ever move forward. "
You are putting too many eggs in one basket. Our cause is not totally defined by one lab.
Igenex is not the reason we have problems.
In fact, it has always been part of the solution... a HUGE part.
To get "better responses" you need to do some research. It is out there. Just dig in an get all the answers you want.
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You said.. "It needs to stop looking like a referral system and unfortunately in Public Health Alert and other places, it exactly seems like this."
If you don't like the way they do their business or run their company... why not write them a letter and tell them. AFTER you take time to learn the facts. That would seem more appropriate if you want to complain.
Now.. Public Health Alert is a newer publication that was started to HELP the community. These volunteers work VERY hard to put in a variety of articles that might reach patients and the public.
To survive they need advertisers.. like ANY paper would because they don't charge for the papers.
Mrs Smith's pies probably wouldn't want to spend money on advertising to an audience base that is not suppose to eat sugar... don't you agree?
And corporate medical facilities hate us... and drug companies and insurance companies.. well I doubt they will want an add in a business that they want shut down...
SOOOOOOOOOOOOOOOOO..
Who do you go to for advertising?
Igenex has always been MORE than generous in supporting patients and advocates. I've seen them donate to help us more times than I can count.
They have sponsored many things to help our community over the years.... so it is not a big stretch to see them help out the PHA paper. And not a big stretch to see why they would be asked to help out. They ARE in the tick borne disease field.
`````````````````````````````````````````````````
You said.. "Lastly, why did Dr. J stop using Igenix?"
I know 4 Dr. J's so you would have to be more specific. And you would have to say how you know? Did a patient not have their tests ordered from them? Was that one patient or all of them?
Most LLMD's I know use a variety of labs for different reasons... patients ability to pay, insurance, specific results, etc.
Sometimes IGexeX gets backed up and faster results are needed. Sometimes Lyme cases are easy to diagnose clinically and a cheaper test is done to see if it will back up the diagnosis... knowing a negative result won't discount the diagnosis of Lyme.
````````````````````````````````````````````````` You said... "I'd love to know why Igenix and Clongen stack up, but Clongen in my eyes is just another Igenix with the same ties."
Who then, may I ask, would you like to have out there testing your blood to try to find out what is wrong with you?
Are ALL labs suspect?
The alternative is to sit back and know nothing.. have NO tests.
Posted by TerryK (Member # 8552) on :
There is nothing wrong with asking questions. Everyone should ask questions before accepting that they have such a difficult illness to diagnose.
quote:Originally posted by Snailhead: Oh, and they are a Medicare certified lab, and Medicare will pay them directly for their testing. I know this is just alot of random info, but maybe it will help.
If they were doing something that was not on the up and up, they wouldn't pass the Medicare inspection each year.
Good point!
Although I think inspections just certify lab procedures and uniformity in testing methodologies, but still leaving the test results open to controversy.
The IDSA would probably argue (if they haven't already) that QA certification doesn't mean that Igenex's testing is actually finding Lyme antibodies, but is rather consistently getting false positives.
Posted by Keebler (Member # 12673) on :
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It is highly unlikely that very many healthy people will pay out of their pockets for tests if they are healthy?
By the time a patient has become sick enough, ruled out most other things and is actually finally to the point of getting tested for lyme, many (in that group) do have it.
Igenex is not testing the general public. The patients who get tested have already gone through many screening processes before they get to the point of testing.
Would better tests help? Sure. But, until those are discovered, we are very fortunate that Igenex is dedicated to identifying what others have been paid to ignore.
-
Posted by duke77 (Member # 5051) on :
A little over a year ago, Dr. Nick Harris told me that about 64-65% of the tests come back positive. That to me seems low, because most people that get tested there are already clinically diagnosised, or there is reason to believe they have Lyme. Whats funny is I had a negative WB, but a positive LUAT and PCR. If anyone should of had a positive WB it shd of been me, because there was Lyme dna present. So I don't buy everyone tests positve from Igenex.
Posted by FuzzySlippers (Member # 13658) on :
quote:Originally posted by seekhelp: I mentioned this in another person's post, but wanted to bring it up as a separate topic.
Have many members here pushed hard on Igenix to answer crucial questions as to why they pick up so many positives and bands compared to commercial labs.
Rather than asking Igenex this question (they've already answered it, by the way), why not ask this question of the other labs for starters:
Let's ask Quest, LabCorp and the other "mill labs" WHY they are producing so many negatives?
Let's ask them why they insist on maintaining the unconscionable Dearborne criteria when the very reason for those criteria (the Lyme Vaccine), has been pulled from the market due to it being unsafe.
Let's ask them how they can sleep at night knowing that Lyme and Coinfections are in the Nation's blood supply while they refuse to perform complete testing for the pathogen?
Knowing that this life-threatening disease can be passed congenitally and it has in the past killed babies in utero.
Knowing that this disease might be sexually transmitted? Knowing that patients receiving organ donations infected with Lyme/Co's have died from the Lyme/Co-infected organs they had received?
Let's ask them why they are only western blotting for an incomplete portion of borrelia burgdorferi and not looking for other prevalent strains (like STARI) as well?
Let's ask them how they can live with themselves knowing that they are misdiagnosing people and allowing a Pandemic to continue to fester.
I'd prefer to put my money with an entity, or lab, that is trying to look at the entire picture by looking at more than one strain and looking at as many parts of this hard-to-find bacteria as possible in order to find it in our bodies.
I will not give my money to the mill labs for Lyme testing. They refuse to even consider the entire picture (i.e., the entire pathogen).
Sorry to sound so angry, seek. The anger is not directed at you. Those mill labs and their deliberately incomplete Lyme tests really burn my butter!
Have you had a chance to read "Cure Unknown?" Pam Weintraub does a masterful job explaining some of the questions you've posed.
Fuzzy
Posted by seekhelp (Member # 15067) on :
Thank you for the wonderful replies, especially yours TinCup. I can tell you put much effort into it. I will do more research as you mentioned.
I was unaware of the background on Igenix and the owner's son. That tells me a lot too. I respect that.
I have no problems with companies profiting. That's America.
I guess I need to know how prevalent STARI is - again more to research when I feel decent enough to do all this.
The 65% positive rate still is high even though we're looking at a subset of people. Many, many, many diseases present with Lyme symptoms as LymeMD says in his blod repeated times.
If I was rich, I'd send my entire family and work employee's blood to Igenix to see how they look. That would be a telling story for me. It may be the only convincing thing, but that'll never happen. I just don't have $20k laying around. lol.
Posted by ThatColorGreen (Member # 16016) on :
Tincup, Great response.
To truly understand the differences of Quest, LabCorp, Central Florida Research Labs, etc etc perhaps taking a course on quantitative biological methods would allow you to understand and appreciate the cost of the materials alone
needed to run the tests. Futher, the better the equipment, mixes, agars, markers, etc etc, the more you will get out of your pcr and blots.
The IND, as said. is what it is and i think tincup did a great job trying to explain it in laimans terms.
If you look at the actual gel or paper (which ever test was run) you will have on one side, markers. these markers are the proteins that you are trying to find.
Sometimes there may be too many proteins gather in one area that instead of being a nice looking horizontal line, lined up with one of the markers, there will be more of a smudgy blob.
For some markers, there will be a light line of protein, which is hard to determine if it is the protein being looked for or if the samples were not placed in the slots carefully.
so you may also get a very faint looking line in a way that the observer cannot make a definite decision as to whether or not that band it there... If that made any sense.
For this, it makes it hard to tell if for that band, is it lined up with This marker or That one?
It would be IND because they see something there, they just cannot say for sure which it it.
.... don't know if that helped with anything, but i think taking a lab in which you yourself learn and perform these tests, you would gain an appreciation for the literal hours it takes to mix the gels, set up the electrophoresis, watch to make sure the dye doesn't run off the bottom of the agar, etc etc etc etc etc.
The tests take about four hours and again, the better the tools used, the better the results.
so, i don't think Igenex is trying to start some huge monopoly with their lab.. there are actually a few other labs that use different techniques, like using flow cytometry for example.
Also, Igenex has many false negatives. I, in fact was one of them. Goes to show that even they, the currently most relialbe lab, still has issues themselves about having the most 'sensitive and reliable' lab.
...I think that's it for me now...
~Green~
[ 04-01-2009, 04:20 AM: Message edited by: ThatColorGreen ]
Posted by Ocean (Member # 3496) on :
Love ya TC!!!
Take care, OC
Posted by Leelee (Member # 19112) on :
Whew! I can't think of anything to add of substance to all the wonderful replies already made.
The only thing I will say is I am glad Igenex is around. My LLMD told me that even they make mistakes but the margin for error is very, very small.
I'll put my money and my life on Igenex. Oh, and on LLMD's too.
Posted by Snailhead (Member # 18091) on :
Man I learned alot from this. Thanks peeps.
Posted by Lymetoo (Member # 743) on :
Thanks Tincup!!!!!!!
seek.. My test from Igenex was negative.
Posted by Keebler (Member # 12673) on :
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Seekhelp,
It seems you are not convinced that you deal with lyme.
You said: " . . .If I was rich, I'd send my entire family and work employee's blood to Igenix to see how they look. That would be a telling story for me. It may be the only convincing thing, . . ."
Many of us have a hard time believing we could be hit so hard with a disease that few doctors know enough about - or even want to know about. But, if you are dealing with lyme, addressing it head-on is the only way.
Good luck with decisions regarding your path.
-
Posted by seekhelp (Member # 15067) on :
I'm convinced it's Lyme Keebler. I'm just always looking for better answers about Igenix as they are at the core of this Lyme stuff.
By the way, I'm hitting this head-on. We went to Missouri just to do that.
Every doctor, friends, etc. always would wonder why this magical lab in Palto Alto, CA finds it all. It wouldn't matter if it's Lyme, another illness, or a non-health related topic. If only one place could find something, questions would come up. It's a fair topic and I believe on many people's mind.
Posted by Keebler (Member # 12673) on :
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It's because they work harder at finding answers - they do their homework.
The question I have is why Americans have to pay so much for labs that do not do their job.
-
Posted by Lymetoo (Member # 743) on :
Ditto, Keebler! WEll said.
Take it easy, seek! Posted by Tincup (Member # 5829) on :
Rip off?
The state of Maryland (patients and insurance companies) spends over $3 million a year on the crummy Lyme tests.
That's insane!
To note- I have been positive on the crummy Lyme tests nearly every time (years ago).. and was lucky I was or I'd be long gone.... but nobody wants to be THAT sick to have a crummy Lyme test come back positive!
Posted by Keebler (Member # 12673) on :
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Even with positives for lyme, babesia and ehrlichia, my doctor said they all had to be wrong because "there is no lyme in our state."
It's not just the labs.
Most doctors don't even know enough to recognize a good test when they see one - or three. What very ill patient would test positive for different three tick infections but then be turned away because doctors think there are no ticks in any particular state (or that they patient might have never traveled)?
So, rather than try to attack some of the professionals who have stepped up to the plate, why not call onto the carpet those who refuse?
The insurance companies don't want to reimburse specialty labs because - gasp! - they don't want to cover treatment.
-
Posted by jennie08 (Member # 17351) on :
Hi,
I see an infectious disease doc in NJ who accepts Igenex results. He says he even tests through them occasionally when he's really baffled by a case. For him it's cost-prohibitive so he doesn't do it much.
He follows the theory that Igenex has more positives because they test for more bands and strands.
He's a rare bird -- he's an ID doc who also diagnoses clinically.
In my experience, Labcorp only found band 41 on my WB, whereas Igenex was CDC+ (with a +++ band 41). However, a year later, Labcorp found another band that Igenex had previously found. Just makes me think that the mainstream labs aren't sensitive enough.
I almost feel like you have to be triple positive on a band by Igenex before Quest or Labcorp's sensitivity will pick it up.
Oh -- and two family members were tested by Igenex and their test results were very negative -- kind of made me feel more secure in my own positive result.
Jennie
Posted by Dekrator48 (Member # 18239) on :
Remember that a negative Igenex result (or CDC result) is only a reporting criteria.
It is not a diagnostic criteria.
It only means that they consider your case not reportable, not that you don't have lyme.
I know it is confusing, since if we are positive by looking at our band results, it should be reportable....frustrating.
Posted by ugagal (Member # 18471) on :
I actually had a positive band 39 on a Labcorp test and the same band was reported as IND on the Igenex test. However, I had positive bands 31 and 41 on Igenex that were reported as negative through Labcorp....very confusing!
Posted by n.northernlights (Member # 17934) on :
I thought IND means that teh resulting band is a little bit weaker than the control band. The other labs report that as negative.
Posted by Ocean (Member # 3496) on :
ugagal,
I'm pretty sure Labcorp does not even test for Band 31, just 30 I think. I believe Quest is the same,
Take care, Ocean
Posted by soonermom (Member # 14494) on :
TinCup
Thanks so much for that *history* lesson on IgeneX.
I have never heard it before.
A year ago, I was searching for a diagnosis. At the time, it sure looked like MS. I was spending a lot of time on an MS forum.
When I sent in my sample (after encouragement from someone on this forum) I really didn't expect much. After all my elisa was negative months before.
My local Oklahoma doctor signed my form and we were both shocked when it came back so positive. Neither one of was sure what to think initially.
I came on here and posted my results and got a lot of great feedback from everyone and realized that I did have lyme disease.
Someone on the MS forum approached me and told me to be *suspicious* of any results from IgeneX because they had conflicts of interest and he was wrongly diagnosed with lyme when he had MS. He had a lawyer and was looking to file a malpractice suit.
A few others PM'd me and said that his LLMD was the son of the founder of IgeneX and that his positive test would "benefit" the LLMD's pocketbook.
Here I was so HAPPY to finally know what was wrong with me, and people were trying to tell me that my test meant NOTHING!! Of course in my case, there was no way that my local doctor would have benefited in the least with my positive test!!
Honestly, since Oklahoma has only reported a few cases of lyme in the last 10 years, they would be really taking a risk sending me some "altered" positive test IMHO.
Not that I doubt my results, but I am glad to have some final piece of the puzzle. It's hard to believe that it has been about a year since diagnosis. I couldn't have done it with out IgeneX!!! (It would've been too hard to go against every doctor and all my neurological symptoms and abnormal MRI/spinal fluid)
Thanks again, TinCup!!
Posted by seekhelp (Member # 15067) on :
I'm confused Soonermom about one thing. I assume the MS patient didn't get better with treatment even though Igenix showed Lyme. Why would he sue? Did he get harmed w/treatment?
To an outsider, a father / son relationship like that doesn't look good. No way around it. Tincup's background helps. It is what it is. I'm guessing for the greater good of Igenix, being a medical consultant would have been better than a LLMD. However, we need all we can get i guess. Posted by soonermom (Member # 14494) on :
Seek:
It sounds like he had just the urine antigen test that isn't even available anymore?? I don't think he even had the IgeneX western blot.
It also sounds like he is in denial about how lyme can be relapsing remitting especially when you go off of antibiotics.
He also thinks that his "remission" just HAPPENED to coincide with a year of IV abx.
About the lawsuit, I am sure his thought is that he went 7 years thinking that he had lyme and not MS and he could have gotten tx for MS and it would have helped slow it down with interferon or copaxone (disease modifying drugs).
Here is part of his post:
"I was diagnosed with Lyme based on an IgeneX antigen test in 2001 after nearly a year of constant neurological symptoms.""
" All other Lyme tests I had done, including both an ELISA and Western Blot at a very well respected university research hospital were negative prior to this."
"I was put on extremely high dose antibiotics for almost a year. I improved, but many of the symptoms I had in 2001 and some that are new have come back in full force recently, 7 years later."
"I do not believe that Lyme is some sort of super bacteria unknown to modern medicine that could lie dormant and asymptomatic for that long after I was literally inundated for a year with 3 grams of antibiotic cocktail per day."
" I have a degree in the sciences and this strikes me as highly implausible based on what I know of bacterial biology."
" I strongly suspect that I've had MS all along and that the onset of the remission phase after that first attack just happened to coincide with the antibiotic treatment."
Posted by ugagal (Member # 18471) on :
Thanks Ocean,
You are correct and I stand corrected. After looking at my test results again, it was bands 23 and 41 that were tested by Labcorp that showed a negative. It was however band 39 that Labcorp reported as positive and Igenex reported as IND. Just wanted to clarify so I did not further confuse the issue. (as the testing results confuse me) Posted by Lymetoo (Member # 743) on :
Tincup... That was really awesome.
Posted by Lymeorsomething (Member # 16359) on :
Yes, excellent response, Tincup. The couple of times I spoke with Igenex employees they were very helpful. I trust their work...
Posted by Tincup (Member # 5829) on :
soonermom..
Thanks so much. It is so nice to know you have a diagnosis and you are being treated.
I do know MS folks are pretty hard to reach. I think it was Mandy's mom... Under Our Skin Mandy (I wonder how she is I do miss her) ... and me.. and was it you too tutu .... and others have been booted off MS and other boards for just mentioning the word Lyme.
Heaven forbid these MS docs start finding out their patients were misdiagnosed! Imagine the law suits there! And the doctor run boards is where we were all tossed from.
Sad.
So I am glad you were saved and know now how to treat.
Thanks for sharing that with me.
nnnn northerlights....
Yes. You got it. A little bit positive. Kinda like being a little bit pregnant.
If a lab dismisses a little bit pregnant... there is a BIG problem.
Hey jennie08....
You said.. "However, a year later, Labcorp found another band that Igenex had previously found. Just makes me think that the mainstream labs aren't sensitive enough."
This new member is going to MAKE me talk about it... You know she is.
The frogs.
Ah!!!!! Everyone run! TC is talking frogs again!!!
Actually hold on.. This is actually the "fish" story.
Ok. You are fishing.
You spend all day out there, worm, pole and some good music.
BUT.. you don't catch ONE single fish.
Does it mean there are no fish in the river?
No.
It means you are a doofy fisherman and I'm not going with you next time!
OK.. It doesn't mean that either..
It means that the water where YOU fished... there either weren't fish there... at that specific time... or they weren't caught.
Same as with the blood tests and bands.
They take a tiny bit of blood... compared to what we have available.. and they test THAT little bit of blood.
If the spirochetes aren't in that tiny sample.. you WON'T detect them.
It doesn't mean you don't have fish... just that they weren't "caught" at that time on that day.
Make sense?
Posted by Tincup (Member # 5829) on :
Yo ho seek...
You said.. "To an outsider, a father / son relationship like that doesn't look good. No way around it."
I know a couple LLMD's.... a mother and their child is one too.
And a couple of brothers that are both LLMD's.
And husband and wives too that are LLMD's.
I've seen patients here whose children grew up to be nurses that were Lyme literate.
And relatives of LLMD's that were Lyme patients and activists.
To me that is beautiful! The more families involved working to help us, the merrier.
And beauty is in the eye of the beholder.
So TRY to be happy dear seek... try please!
Ask questions, always... just don't dwell on the negative so much or worry about the reasons we are in this position. It is NOT the fault of LLMD's, our labs, etc.
It is the IDSA and their garbage.
I can assure you most of our motives in the Lyme community are pure. We want to help others.
There are such things as good doctors and good people.
If you can accept that... chances are you will feel less stressed and more comfortable... which is always the goal.
Ok?
Posted by Richard1062 (Member # 19233) on :
Wait a minute. ThatColorGreen, you're talking about the smudgy blob getting labeled as IND.
Do you mean the dark material could belong with the band on either one side or the other of it? So in other words, the IND might be understood to strengthen either the band before or the band after it?
Why did I think (as does n.northernlights) that the IND means weaker than +, but stronger than - ?
I know, go by clinical symptoms, etc. I'm just interested and really curious about how to understand this list of numbers we've got from Igenex.
BTW, I also called Igenex before our test, with some questions. I got a return call from a Dr. there who was very helpful and informative.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Amanda:
One thing to keep in mind is that IgenX lab techs specialize in reading the lyme western blots. Over time, because of the sheer number of western blots they read, the techs are better at reading the bands.
I would agree with that assessment!
Tincup.. Yeah, I've been thrown off a few boards. Can't even remember which kind. MS, FM, or both. It was fun.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Richard1062:
Why did I think (as does n.northernlights) that the IND means weaker than +, but stronger than - ?
You are correct. Where did GREEN say the other??
Posted by WildCondor (Member # 434) on :
Well said TinCup!!
Thanks for all your time & effort.
You folks really need to look at the links, articles, info on this site and Lyme sites and get educated on all of these things before you come here and ask questions or make accusations.
IgeneX has always been respectful. If you have specific questions, call and ask. Ask your LLMD. Read the IgeneX site, research this stuff, it's all there, like TC said, 30 + years of history.
As for Public Health Alert, its free, and it's mission is help all of you and provide free information to help save lives. Writers are not paid. It's FREE for all of you, and the advertising pays for its printing, and that's what it takes in order to survive...FOR YOU. If you have a problem with it, don't read it. Referral system?? It's called networking! See, your on LymeNET. We all have to stick together to get the info out there to all the sick people.
Posted by Keebler (Member # 12673) on :
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WildCondor,
Very well said - all of it. Ditto.
-
Posted by LLYME (Member # 18687) on :
I believe this is the article and New York investigation that started the fire under Igenex:
I have a positive lyme test through igenex, seven bands on IgM and two on IgG. My Labcorp test only has one band on IgM and IgG (these bands on my igenex test are negative which is odd). My Quest test has no positive bands.
I am an engineer and like scientific data, to hear both sides, question popular option, and never accept what is told to me by experts as fact. Seekhelp you are not out of line at all to ask questions.
I have not herxed or responded much to any of the tons of antibiotics I have been on so I have valid reason to question the validity of the test. It still bothers me but I keep moving forward with treatment hopping this test is in fact right and it is Lyme I am fighting.
This test has helped many figure out what is wrong with them and ultimately get better, I do not mean to be negative. I feel this is a good discussion I am happy to see peoples with concerns about the test speak up. Please do not get angry at people who have concerns, we are all suffering and there is nothing wrong with asking these questions.
Posted by Richard1062 (Member # 19233) on :
Lymetoo,
Green's post is in this thread, on 03-30-2009 at 02:46 PM. The explanation about the IND is in the middle of the post.
Is that enough information? I'm afraid to copy and paste his or her words here, because last time I did that (as a complete newbie) it came out bold and I'm not techie enough to unbold it.
Posted by seekhelp (Member # 15067) on :
Thanks Llyme. I knew this would be a lynching. I think the perspective here is so swayed, anytime someone questions a LLMD or a lab on our side, it's taboo. I too am science-minded.
I'm not trying to personally attack anyone. You're reading it wrong. I was phishing for facts and many were provided. I appreciate it. IMO, anyone who doesn't think it's right to ask questions about a lab producing 65-75% positive WBs..well.
I'm no scientist. I admit it freely. I can't take nor have access to microbiology lab courses. I have no problem saying this and many, many here are 100x more knowledgeable on this stuff. That's why I asked!!!!!
As far as PHA, again, look at what I wrote. I said the publication's credibility can be taken away to a degree based on the advertisers. I should also have mentioned I ENJOYED reading it and very much appreciate those sharing their time and efforts to educate us. I guess I just look at this from the angle of how the Lyme community will ever be respected mainstream. I'm playing devil's advocate and perhaps I'll shut my mouth.
So many here have been helpful beyond belief. I'll never stop questioning that which I find odd. If I do, that means I've lost my mind.
I always appreciate posters who answer questions directly. I find a few on here (not mentioning names) just never respond to a direct question and put out general postings to most and respond to desired members. That bugs me a lot just because a common viewpoint is not shared.
I have two choices personally: treat as Lyme/cos or say it's over. Well, a third is anti-depressants. I know it's Lyme. My proof is in how I react to the meds. I just pray my treatment will someday alleviate all the stuff, not just a small amount. Don't we all? Posted by bettyg (Member # 6147) on :
seek,
reading down thru today's posts and having read earlier ones, this is what i'm getting from several of the long-time posters here:
please take the time and look thru these things 1st FIRST:
1. treepatrol's newbie help at top of medical; he has an archive of over 1,000 links and has organized it!
2. look thru my newbie package links with my TABLE OF CONTENTS; it will be shown there EXCEPT FOR
additions added after the date i posted this! it's 160 pages and will NOT download with additions i put on there. so they can be found AFTER the end of my newbie links.
3. use the SEARCH feature shown on the top; this works good and fast compared to what we had earlier!
type in the key words of what you want to know about.
medical body text; 2nd search show subject any date leave membership no. blank click search
read all posts/replies; if NONE, use BACK button and change to subject; click search and read all posts/replies.
that's why treepatrol and i have worked so hard to collect these things for all members here so we don't have to keep reinventing the wheel.
you have been here 1 year now, and please use the resources we have established to save us all time repeating over and over. Posted by seekhelp (Member # 15067) on :
Sure thing BettyG
Posted by emh2l (Member # 18886) on :
Great questions, seekhelp! I, like you and a few others on here, like to look at all of the info -- not just the commonly-held view. I have had the same questions about Igenex but didn't feel comfortable asking them on here.
I have read thru much of the info on here. Unfortunately, I find it to be one-sided. That is not the way to become educated.
I just can't believe that all docs other than those deemed "LLMD" by those here are completely wrong. That's why I keep trying to get ALL of the info I can. Why is that wrong of me or seekhelp or others?
Posted by riverpatrol (Member # 12182) on :
Someone on another board put it very well: "If a biopsy was being done on a suspicious lump and there was a choice of labs, which one would you prefer? Quest or City of Hope? What would you think about a doctor that insisted Quest was preferable to City of Hope because City of Hope lab found too many cancers?"
Okay, not a very scientific answer, but it is apropos.
Thank you Tincup for that enlightening history lesson. I had no idea. This is my take on the 'conflict of interest': A doctor can only see so many patients. Even if daddy is funneling patients to him via positive tests, he is only capable of seeing so many patients. If you had ever been to see this doctor you might understand a little better: no one would intentionally become as inundated with work as he is.
Yes, I am defending them. But with good reason: if I had ignored their Igenex positive/CDC negative results and gone with both of the negative Quest results, I would be doing chemo therapy and prednisone and not getting better, instead of IV rocephin and being able to walk again.
Posted by Sojourner (Member # 9424) on :
There is just toooo much emphasis on a VERY BAD test..........
When I hear, "All Igenex tests come back positive," I just want to PUUUKE. Fact is (and the IDSA criminals know this) the sickest patients often have the most negative lyme tests...yes, even at Igenex.
I've got a bunch of lymies in my family, and the ones that are most neurological are NEGATIVE at Igenex.
Lyme is a clinical diagnosis, the patient should be treated not the positive or negative test.
I am sorry for those that just can't get past the need for a lab result to confirm or deny their diagnosis, but it just doesn't work that way.
1. The disease was originally and continually misdefined. 2. The diagnostic test was manipulated to show few positives. 3. The treatment has been watered down and limited.
This is exactly the way it was intended to be-----by the powers that be.
Oh, and the lab in question is IGENEX not Igenix---why do some keep using the wrong name??? It's a small detail, but stuff like that bugs me.
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For all I know, he/she does! I doubt it though. When the ties get closer, it requires much more detail on how the issues are handled appropriately and objectively.
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