What does it mean that the CDC is negative though?
The physician who gave me the test results back said he wasn't quite sure how to take these so he said he'd look into it and wants me to come back Tuesday afternoon to see him.
What do you all think?
This may be weird but after being sick for about 2.5 years (22 years old now) I'm sort of relieved to actually have something to call what I have and that there IS treatment and a path to getting hopefully better!!!!
I got my physician to fax a referral to a LLMD in Toronto (Dr. B)so that will probably take a few months.
I edited my post to include the fact that my dad doesn't really trust Igenex so go down and see one of my later posts for details.
First LLMD appt Oct 3rd to start treatment! Currently on 500mg Cefuroxime twice a day Posts: 52 | From Windsor, ON | Registered: Jul 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Matt,
Your IgM has very lyme specific bands, meaning that nothing else could cause those bands to be positive except Bb.
CDC negative menas nothing! they do not count band 31, which is ridiculous as they made the now defunct Lyme vaccine out of it. Your +++ on band 31 alone is an indication that you have been infected for awhile. Research has said that this band only shows later in disease.
Definately follow-up w/ a LLMD and get proper treatment the first time around.
Good luck and get well, feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
thanks ... what's the difference between the IgG and IgM tests anyways?
Anyone have any good links/posts that i should be reading up on regarding understanding the western blot or even what to do for treatment in the mean time until I get to see an LLMD in a few months??
-Matt
-------------------- Age: 22 - Symptomatic Since age 19
First LLMD appt Oct 3rd to start treatment! Currently on 500mg Cefuroxime twice a day Posts: 52 | From Windsor, ON | Registered: Jul 2008
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posted
What does it mean that the CDC is negative though?
It means that the CDC doesn't understand the term "Lyme-specific bands!"
Yes, be sure to read the link Northern gave you!!
You're WAY positive. No doubts!
Bands 83-93 are the DNA of the Bb!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Both your IGG and IGM tests are positive. It says so right at the top. Igenex positive is all you need!
Now you need to find a good LLMD (Lyme Literate MD) to treat you. You can do so by going to the Seeking a Doctor Forum and posting where you live in the title.
Welcome to Lymenet and good luck!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed here do to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
(Please read the entire article. Discussions and replies from here on will be based upon your having this information. It will clear up a lot of questions.)
==============================
AFTER reading the Savely article (link above) this will make more sense
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
posted
The CDC's requirements for a positive is for DIAGNOSTIC PURPOSES ONLY as stated on their own website.
Your test is a VERY clear positive. Copy the Dr B guidelines on www.ilads.org for your doctor so you can start treatment well before your referral to the LLMD.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Ya so i edited my post because I told my Dad (I'm only 22 so still at home with parents) about the results and he was happy at first that i finally got a diagnosis that is treatable/curable ....
But then he said he looked up Igenex and found some people talking about how they think Igenex is a huge scam and blah blah blah and no one tests negative through it and what not
I totally disagree with him and whatever he read online based on the fact that i have found posts on here that people have posted individual IgG and IgM or combined negative IGenex WB tests
ALso by the fact that so many people who have been sick for so long and tested positive by IGenex but negative elsewhere have started feeling so much better or even been cured through treatment!!!!
I can't remember the last time i was this hopeful towards a better future because I finally got a diagnosis and he went and said that
Any thoughts - I wanna stress I 100% disagree with him and whoever online that thinks IGenex is a scam so I'm on the good side so i don't wanna anger anyone lol
PLease don't ignore the topic of my results at the same time please
-Matt
-------------------- Age: 22 - Symptomatic Since age 19
First LLMD appt Oct 3rd to start treatment! Currently on 500mg Cefuroxime twice a day Posts: 52 | From Windsor, ON | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Please go back over the links and this will be clearer.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Tell your dad the person who started IGenex is also a father.
Years ago he developed tests to help determine what was wrong with his son and a few of his friends because he had technical knowledge and a lab... and the opportunity arose.
Tell him the tests have been in use for years- they are better than any other tests we have available... and were developed with skill and a lot of love and concern.. and NOT for profit.
They have passed ALL requirements to be certified .. and then some.
Igenex Lab doesn't sell their tests... like nearly all other labs do.. and they don't do a variety of tests.. for anything and everything ... like other labs do.
Tell your dad I've been doing this for many many moons... and I recommend IGenex and would do so for my own self and my family.
Tell your dad... heck, bring him here and tell him...
The reason IgEnex gets slymed so much is because...
1. They have a better test than anyone else. (Competition in the market place).
2. Those who have Lyme and are missed with the run of the mill cheap-o tests .. who then get an Igenex test.. prove the doctor's who ran the tests.. and their labs.. to be wrong. Doctors don't like to be proven wrong. It's called a law suit.
3. Tell dad that Johns Hopkins did an in-depth study (in 2005 I believe) on the accuracy of Lyme tests. The tests (not Igenex) that most people use (insurance accepts- doctors have financial incentives to use them)... missed aproximately 75 percent of the people who had Lyme.
READ THAT AGAIN.
The standard tests for Lyme disease miss 75 percent of those who have Lyme disease.
To note- and why they are still on the market...
In Maryland alone.. $3 MILLION dollars are spent on these cheap tests EACH YEAR.
AND.. the ones promoting them often have BIG time reasons to keep using them, the bad tests that they are. (Law suits and financial incentives)
Tell Dad I wouldn't feel comfortable depending on a negative test from another lab. I would insist on using the best for MY family.. as I am sure he would too. Plus, IGenex.. as good as it is... also misses people. But not nearly as bad as other labs.
quote:Originally posted by Tincup: [QB] Tell your dad the person who started IGenex is also a father.
Years ago he developed tests to help determine what was wrong with his son and a few of his friends because he had technical knowledge and a lab... and the opportunity arose.
Thanks for the reminder, Tincup!!
sans... Tell your dad my test was Igenex negative. Then have him read my story!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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quote:Originally posted by Tincup: Tell dad that Johns Hopkins did an in-depth study (in 2005 I believe) on the accuracy of Lyme tests. The tests (not Igenex) that most people use (insurance accepts- doctors have financial incentives to use them)... missed aproximately 75 percent of the people who had Lyme.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Matt, My brother in law who has been sick for about 22 years, had a test through Igenex and was positive for LD and ehrlichia.
Well he treated for a few months and didn't like herxing (which tell your dad, if he doesn't trust the lab, try the treatment and see if he gets worse or better - which will confirm the test is right).
Anyway, my brother in law still not convinced that Igenex was reliable just took a trip a few days ago to an Md (1000 miles round trip).
I had to laugh, the MD said, "Igenex is one of the most reliable labs in the country, you have a diagnosis, what are you doing here?"
Tell your dad - if he doesn't trust the test, start treatment, ask him what he has to lose by trying treatment. Then when the herx hits or if he's lucky and starts feeling better, maybe then he will realize the lab "is one of the best in the country".
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
It makes me so mad to hear people say that no one tests negative through IgeneX....
I did... as well as many other people.
The fact, though, that soooooooo many people who get tested through IgeneX end up positive just goes to show us, I think, that there are many, many people out there who are walking around with lyme every single day and have no idea. It's an epidemic, it really is.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
CDC developed the Western Blot as a test for disease surveillance NOT for diagnostic purposes. You should see that printed on the bottom of your test. Physicians are actually told the test can not be used to make diagnosis.
So CDC+ equals SQUAT!
Listen to the advice above and get to a LLMD. YOU HAVE LYME DISEASE!
-------------------- Amy
Diagnosed April 29, 2007. Posts: 136 | From Joplin, MO | Registered: Apr 2007
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my dad's always been non-trusting and suspicious of everyone and everything so it didn't surprise me
ps. some of you were talking about my dad getting treatment lol but i think you might have misunderstood b/c it is me who has the positive diagnosis and i am definitely going to see an LLMD and start treatment - I already have a referal in the process and just awaiting an appointment
Also, I 100% agree with the results and have no doubt in my mind towards IGenex's reliability.
I'm going to change the title of the topic because I meant to say that these are my test results (some people may have been confused), but being 22 my father is a big part in paying for my antibiotics and he for some reason really doesn't trust Igenex and i would like him to feel good about it.
But I'm actually happy to finally have a diagnosis and want to work on getting treatment started and starting on the long road to recovery asap.
-Matt
-------------------- Age: 22 - Symptomatic Since age 19
First LLMD appt Oct 3rd to start treatment! Currently on 500mg Cefuroxime twice a day Posts: 52 | From Windsor, ON | Registered: Jul 2008
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Oh, well if it is YOU ...as long as you are over 18 and you are, you can make your own decision, thank God!!
One thing you will find common among us, "family" doesn't always understand and sadly many aren't supportive - who could understand all of this really, the politics, the bad test, doctor's arguing over how to treat and on and on.
There is so much info here, you have to be thorougly confused.
Let me give it shot here - I wil give you my explanation of CDC negative - in as simple terms as possible.
The CDC (Center for Disease Control) use to have a different more reliable Western Blot test.
They made a decison to make a vaccination (the vaccination was a flop and was giving people Lyme Disease and now can no longer be used)they used 2 very important bands from the Western Blot (bands 31 and 34) to make this vaccine.
Now with the vaccination no longer in use, they should include the bands again, but they don't.
Bands 31 and 34 were removed from their western blot test because now they were afraid there would be too many people getting the vaccine and would test false positive if bands 31 and 34 were still included in their test.
The CDC warned that their test after the removal of these 2 bands was now NOT DIAGNOSTIC the test now (without the bands) could only be used as a survey in the event of an epidemic.
This explains it all - Read and print both pages here and give them to the doctor, also for you dad so he better understands: http://www.ilads.org/basic.html
Igenex uses all bands including 31 and 34 making their test DIAGNOSTIC.
I hope this helps, it is somewhat complicated, but do print the link I gave you above (2 pages) explains everything the doctor needs to know.
Sixgoofykids meant to say the CDC test is for surveillance purposes only and NOT diagnostic. Feelfit meant bands 31 & 34.
If you want more information on each band and what IgM and IgG means read this: http://tinyurl.com/5ae6zy
posted
This issue about the CDC results being for surveillance purposes only is an odd one, since every duck I've seen insists it's diagnostic, even when I point out statements to the contrary on the test result forms, about the disease being also based on clinical symptoms and history.
Posts: 13116 | From San Francisco | Registered: May 2006
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Alv
Unregistered
posted
My daugher has only 2 bands IGM 39 and IGG 28 .LAST summer I sent her to MY SONS LLMD the BEST pediatritian in the world as she had a RASH when she was 9 years old.
OK my son was under treatment with lession on his head and has only 2 bands ( TWO nothing more and 1 was 30 and the other was 41).
I sent him to 3 other doctors that used other forms of testing ( BIOFEED BACK and ART) .Both had no clue of the diagnose that I got.BOTH told me that my son has active lyme.
THe machine BIOFEEDBACK does not know ME or my son .CONFIRMED IT as he has lyme .WHEN IGENEX shoed 2 bands and the lab corp showed no bands.GO FIGURE!!!
HE HAD late stage neurolyme and 4 coinfections.WAS hitting his head and his immune system shut down.Some delays and probably I would have lost him.
MY PRIMARY CARE family practitionar ordered an MRI for my son.6 months into treatment and my son was having lession on his head -confirming that he was neurolyme late stage.
THE pediatrition started him b/c of the symtoms and not because of the bands on the treatment.
MY SON responded right away.HE had it for so long and his immune was not even showing more bands...( LONGER YOU HAVE IT LESS BANDS YOU MIGHT SHOW).
So he started my son based on symtoms.
Again my daughter has only 2 bands and he did not wanted to treat her as even though she had a rash that I confirmeed exactly on his BOOK with real pictures( private taken from people all over the world) he decided not to treat it as she might have been exsposed and not get the BUG infections from the exsposion.SHE HAD NO SYMTOMS even though SHE HAD BAND 39 !!!
So no symtoms no treatment.It is less than 1 year my daughter started showing some symtoms of beeing fatigue and insomnia and some foot pain.I send my daughter to MY LLMD now.She confirmed right away that she has her lyme activated and BARTONELLA henselae also.Stretch marks showing up on her belly .
We started the treatment.She started telling that she had pains in her joint bunion ,left knee and head and her left shoulder from the antibiotics while she did not felt the pain before just rarely fatigue and irritated.
So she is herxing.She responded within 48 hrs of the treatment.A normal person will not herx right away if there was nothing in there going on.
So please this is diagnostic and if based on the TEST only -I would have lost my son .And my daughter would have been worst and more damage from waiting to have a positive IGENEX.
By the way the other labs ( we tried 2 others ) showed NO BAND at all.GO FIGURE!!SO IGENEX is the best.
I was near death and had a POSITIVE IGENEX!!!Do you want to wait to have to BE NEAR DEATH SO YOU CAN GET A POSITIVE TEST!!!
I HAD EVERY SINGLE SYMTOMS LISTED ON LYME DISEASE and 5 coinfections with it!!!!!Misdiognosed for at least 20 years and reinfected over and over !!!
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Igenex is reputable. Review their certification and authenticity. The have CMS, CLIA Cert, approval by CA, MD, FL, NY, PA, as well as CAP certification. Our own government says "Yup, they're legit" -- Medicare will pay for the testing, sometimes entirely. They paid for all of mine.
Additionally, almost all my testing was negative. Only western blot concluded I has borrelia burgdorferi B31 infection.
They've been investigated independently over 8 times, and the average rating is 96% accurate. In other words, your father doesn't know what he's talking about, and you absolutely have Lyme Disease. It's unfortunately, and I'm sorry about that -- but those are the facts.
-------------------- 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.
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