Topic: CDC positive/want to report so case can be counted if so
me
Frequent Contributor (1K+ posts)
Member # 45475
posted
According to CDC, it looks like one has to have a positive eia or Ifa AND either 5/10 bands positive for IGG OR 2/3 bands positive for IGM unless symptoms are greater than 30 days re: Igm positive.
I had the two out of three igm positive, but it says IFA negative on my report. I can't find anything on EIA. Plus, my symptoms were far greater than 30 days.
I would like to report this if I'm CDC positive, but I am still confused as to whether I am or not. Does the above info qualify me as CDC positive?
I am being treated by a LLMD. I just want to make sure my "case" is counted if I am CDC positive. Thank you so much.
Posts: 1431 | From USA | Registered: Mar 2015
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posted
I had 8 positive IgG bands and my doctor refused to report it and told me it was a negative test. I called the CDC myself and they didn't care. They told me that if I didn't like the doctor, to find another one. I just wanted it reported because my area is not "endemic" according to anyone, yet all kinds of people here get Lyme.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- me,
as you been here two years, if this test in not a brand new discovery of a illness that just began, the CDC may discount it. Just be aware. Do what you can to still report it, leaving out any LLMDs name when possible.
If you send them a copy, on the copy page only, you might black out the doctor's name.
Good luck having your voice count. Backing up, you might first ask your state lyme support group & also Lyme Disease.org for how to go about this so that it registers yet still protects any LLMD on the case.
LymeDisease.org -
Posts: 48021 | From Tree House | Registered: Jul 2007
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Thank you for the responses.
I'm just confused as to whether or not this would have been or would be a CDC positive case since the IFA says negative and there is no EIA?
Is the Ifa and eia built into the igg and igm??
Would this be considered CDC positive based on the two-tier model? If so, why?
I'm also trying to show some loved ones that I DO actually have Lyme. I know some people don't want to hear it, but I would love their support. If I can prove I'm CDC positive, it would help. Thanks so much.
Posts: 1431 | From USA | Registered: Mar 2015
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Bump
Posts: 1431 | From USA | Registered: Mar 2015
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posted
I don't know why all that matters. If you had a Western Blot that is positive, it's Lyme. I don't even know what the eia/ifa are ... those tests shouldn't make any difference to your family members. You have a positive Western Blot.
Either they believe you're sick or they don't. Unfortunately, even in the face of positive test results, some people still won't believe you.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
You never had an ELISA? I think that is the same thing as the EIA... not totally sure.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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me
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Member # 45475
posted
Apparently not because I don't have anything that says Elisa or eia. I have the full report in front of me. I don't know if I'm missing something but there isn't any reference to it. Would it say Elisa or eia, bc it doesn't.
I wasn't educated on Lyme at the time and the doc I saw them had just started seeing Lyme patients, so I had no idea about two-tier testing. It's frustrating and confusing.
Posts: 1431 | From USA | Registered: Mar 2015
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me
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posted
Up
Posts: 1431 | From USA | Registered: Mar 2015
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me
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Member # 45475
posted
Update: CDC referred me to the health dept. Unfortunately, I'm not considered CDC positive since my onset of symptoms were 8-10 years ago and my former dr didn't run the Elisa first. I wish I knew more about Lyme at the time so I could have requested that!
Just a FYI in case anyone else has the same question: according to the lady I spoke with, in order to be counted as CDC positive, she said that all the info has to be done by the same lab and from the same blood sample (I.e., if I came out positive Elisa on Igenex but not positive on Igenex western blot but positive on one of them at labcorp, it wouldn't count).
Posts: 1431 | From USA | Registered: Mar 2015
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Many people won't answer when a person constantly "ups" their own post when it hasn't even fallen to page 2. Just a heads' up. You'd get more comments being patient.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Just a FYI in case anyone else has the same question: according to the lady I spoke with, in order to be counted as CDC positive, she said that all the info has to be done by the same lab and from the same blood sample (I.e., if I came out positive Elisa on Igenex but not positive on Igenex western blot but positive on one of them at labcorp, it wouldn't count).
Actually, she's wrong. Here's the criteria, which says nothing about the alleged requirement it has to be from the same blood sample. Usually the ELISA is done, THEN if/when it's positive, the Western Blot is done, so more blood is taken. My guess would be that it's SELDOM from the same sample of blood.
posted
Im actually going through something similar. I tested positive for Lyme in September after many years of health issues. I never really knew much about Lyme or suspected it.
But looking back at LabCorp records (which you can now get on line) I found a western blot that was IGM positive by Western Blot in 2011.
I was never informed that they were even testing for Lyme at all! All they told me was that I had mono....I couldn't move from my bed for a week...couldn't even lift my head off the pillow.
I don't quite understand all of these results yet but I guess there weren't enough bands to be technically positive, yet I was symptomatic.
I am trying to find out for myself if this is something I can report. Had I been informed in 2011 a lot of pain and suffering may have been avoided.
Posts: 66 | From New York | Registered: Sep 2015
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
I'm so sorry you're going through this.
Are you CDC positive or unsure if you're CDC positive? If you're CDC positive, then the doctor should report it. I was in a pickle bc my doc's office at the time up and closed with my PICC line in!
EIA is an enzyme immunoassay- this is a type of testing, and the ELISA is a specific test in this category. (So in this instance, I would say the EIA/ELISA are sort of interchangeable terms for the same type of test.)
IFA is indirect immunofluorescence assay- another type of test similar to the EIA/ELISA.
EIA and IFA are the types of screening tests you would do prior to the Western Blot- you do one or the other. Whether these are positive or negative, to my understanding, would not matter to the CDC- they want a positive Western Blot with specific bands. (Not just a number of bands, but a very specific combination of certain bands.)
If you went through IGeneX, your Western Blot results will specifically say if you are 1)Positive and 2)CDC positive.
Personally, my IFA was positive and my Western Blot was positive, but not CDC positive.
It is not your doctor that reports you to the CDC- it should be the lab. I got a call from the health department a few days after I got my results and I asked them how they got my information. They said the testing lab legally has to turn over any positive (and apparently not only CDC positive) results.
I am not sure if this differs from state to state, but this has been my experience!
Posts: 13 | From Ohio | Registered: Feb 2016
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