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» LymeNet Flash » Questions and Discussion » Medical Questions » When is lyme reported to CDC?

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Author Topic: When is lyme reported to CDC?
purplemom
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If my western blot were to seroconvert (after antibiotic treatment) to a CDC positive test would the case be reported to the CDC or are there other criteria that must be met as well?
Posts: 207 | From NH | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
Veromia
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I am starting a thread about this because my daughter had a CDC pos western blot through igenex,

I just got a letter from the health dept.

Saying They recieved her lab results, they want me to call them.

SoIi believe it is def reported if you have a CDC pos test.

I suppose I will be contacted by the CDC?

I need to ask I have seen people who have had a call when they had a pos test.

I'll see what people say here first.

I dont know what i'm supposed to say she contracted congenitally .

Surely they dont believe in that.

And my WB had alot of bands, but fell short of CDC pos.

shes 2 but healthy.

Oh well i dont care if anyone believes me any more, I know you guys do!!

Thanks.

--------------------
Let us fight with peace.

Posts: 90 | From Niles, Ohio | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
Pinelady
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Lyme is also a clinical diagnosis and as such is reportable also. Just most doc's don't. Why I don't know. Hassle probably. It is their job to inform you not to give blood, make organ donations.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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JamesNYC
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I thought every positive result had to be reported to the CDC. But I don't know if by the Dr or the lab.
Posts: 872 | From New York City | Registered: Jun 2008  |  IP: Logged | Report this post to a Moderator
bettyg
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5 yrs. ago when i was dx, i was told it was to be by the BLOOD RECEIVING BACK RESULTS to contact the state's health dept.

state health dept. is to reprot to cdc; however, other posts on here have shown that NOT to be!!

did they give you an 1-800 no. to call back or i'd charge it to them personally....

other folks have been contacted too; i NEVER was...

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Aleigh
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I'm not sure I completely understand the exact question or what this discussion is entirely about (duh, me) but I'll add our experience. I don't know who reports to who or even entirely which tests they take seriously.

My son's Elisa was very high, somewhere around 3.8. He was given the Elisa because here they apparently don't take the Western Blot seriously. He was given the test by an ER doctor. We live in NC where "Lyme does not exist."

After a 3 day hospital stay and lots of tests and observations the Lyme was confirmed positive by a good ole boy mainstream ID doctor who thinks everyone on this forum is being misled by witchdoctors. But he was convinced of my son's Lyme, so at least he didn't have his head stuck up somewhere too far.

However, the case is being reported as a Maryland case. Bless their pointy little heads.

The Health Dept called me and took down the story. Long story short my son did NOT contract it in Maryland. He got it in NC. But they weren't listening.

A man from Carolina Lyme called me, got our story and took it directly face to face to the Director of the NC Dept of Health. We're pursuing this. It's not over. NC so far has NO confirmed cases of people having caught Lyme in the state. A news reporter will be contacting us we're told...

I'm not sure of the sequence - who reports to who and where the CDC falls into it. I just know things are not right.

Posts: 43 | From Southeastern US | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
purplemom
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It was my understanding that a "clinical diagnosis" was not reported to CDC only if very specific bloodwork was met and positive tests only (I believe western blot by CDC standards only) but I see that Aleigh mentioned the Elisa was reported and maybe my daughter only had that done I don't even know...

ie my daughter had a tick bite, bell's palsy and a positive lyme test and her pedi told me he was reporting it and didn't know if they would call or not (that was in June) but we live in
tic-ville so I doubt they could call everyone.

So right now I have a clinical diagnosis that is not reported as far as I know still have more to learn

I would like a positive test result for validation like to frame and hang on my wall:) and also to send to all the freakin doctors that looked at me like I was nuts......

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tickedoffjan
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I was CDC positive on a LabCorp western blot. That was in April 2008 and to this day no one has contacted me regarding the results. So I am not sure if the it was ever reported to the CDC. Does anyone know how I would find that out? I'm just curious to know if it was reported or not and if not, than it is no wonder that they keep saying that lyme disease does not exist in TN. GRRRRRRRRRRR!!!
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purplemom
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I would call the doc's office who did the western blot and ask them. I think it is very serious if they don't report it, not sure?
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Pinelady
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You can bet your boots they would not have a problem reporting Syphilis or other sexually transmitted diseases.
But with no clear cut test?

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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s0ngbird1962
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The pedi who misdiagnosed him despite classic symptoms, (he correctly diagnosed him 9 months later when his knee blew up), said he was reporting it to the CDC. He said to expect a call, we never got a call. Wonder if the pedi ever really reported it?

--------------------
Mom to a 5 year old lymie....
Taking it one day at a time.

Posts: 182 | From Ipswich, MA | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
Tincup
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The CSTE just revised the reporting criteria... again. We protested it in person and by letters... but they did it anyway at their meeting in Atlantic City, NJ.

It is a complex and STUPID system... again and still... and it is a waste of tax payers money to even have it in place as it is so inaccurate.

Doctors often... more often than not... WRONGLY use the reporting criteria to diagnose or NOT diagnose and treat Lyme.

People suffer because this is being done... and they shouldn't be.

In addition, states can make up some of the rules they will follow... so they can differ state to state. In some states, like Hawaii, even though there are Lyme cases, it is not reportable.

Some states (health departments) claim they don't have Lyme.... like the NC idiots... and that has been since Dr. J was nearly beaten to death by them. Before that incident, there WAS Lyme in NC.

NC has the third worst bunch of TOADS for a Health Department I've ever seen. Following CT and Maryland, which are in first and second place.

Other states claim they don't have enough people to count cases.. like the CT and Maryland health department .. so they just skip them if they are busy with other stuff.

Sometimes entire counties report NO cases because no one counted them.

Yes, doctors are suppose to report ALL Lyme cases, by law. My guess is less than 10 percent actually do... and of those cases...

If you don't meet the stringent "reporting criteria" according to what the doctor filled out .... you usually won't be called and you won't be counted.

I've never heard of any doctors being sanctioned if they don't report the cases... and many won't so as not to draw attention to themselves in this political nightmarish system.

Your doctor MAY be called if they have questions after he/she reports your case. THAT is how it is suppose to work.

Labs are mandated to report in some states. Some labs must report, not all are required to.. and this only happens in some states.

USUALLY... if YOU get a call.. they don't believe you have Lyme OR...

They are doing some fishy stuff.

You all are from different states so I am sorry I can't spend time right now responding to each of you about your individual state's rules... but suffice it to say...

The whole reporting system is a joke.. a SAD joke.

Here are the cases from last year.. they are finally out.

My guess is for every one case reported... 25 or more are missed.

The CDC admits to 10 cases missed for each one reported.

http://www.lymediseaseassociation.org/CDCCases2008.pdf


[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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bettyg
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tc,

thank you for the very SAD/FRUSTRATING ... every state has their own rules explanation !! PU; hog wash at its best! [cussing] [toilet] [tsk] [puke]

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Veromia
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so I shouldnt call back. Or I should.

I believe it should be reported but she is congenital .

They wont believe it. The only place shes bn is texas this summer.
Where we certainly didnt do any camping.

And we all know theres no Lyme there. bad joke

I had her test done a couple of days after vacation..

All symptoms of her very light Lyme have existed since birth.

I dont feel llike explaining myself at all.

--------------------
Let us fight with peace.

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Tincup
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My advise.. and I am NOT a doctor.. is not to call them back.

You are right in the fact they most likely won't report it anyhow.

I have also seen this tactic being used against our LLMD's. If they are treating a case that is questionable... to others and not us...

Chances are it will raise flags.

It is certainly up to you... but if it were me... in this case...

I think I'd let them call me again if they want the info bad enough.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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BTW- Here is a case definition:

http://www.cdc.gov/ncphi/disss/nndss/casedef/lyme_disease_2008.htm

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Wimenin
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I was told by my LLMD that I was positive via Igenex, serological testing. I was told that it must be reported to state agency and the CDC. I recvd a letter from the state that it was reported. Thats a good thing...it gives proof you have it for when you need to go and fight the HMOs for reimbursement after they said you didnt have it. The reporting is necessary for tracking and it lends credence to the silent pandemic.
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lightparfait
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There is a break down in reporting.

First your LLMD tells the Town/City paid employee...if they have one!

Then your Town/City rep. (if they exist) tells the state CDC rep. HOw always exists, but is overworked, and does not have a perfected system in place to get all reports.

Then the State CDC rep tells the US CDC rep. their finaly tally!

My state of NJ has no RMSF reported in NJ!!!!
My LLMD reported over 100 cases!

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Aleigh
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My last post was totally confusing, sorry. I'll reiterate here.

My son's positive 3.91 Elisa test done by LabCorp was reported by his mainstream ID doctor to the health dept.

The health dept called me to hear the story.

That was that.

So does the Health dept then report it to the CDC? Is that the sequence of events? If so, isn't the health dept the one that's falling down on the job?

How do you find out if it's been carried through to the CDC?

I'm very curious because my son's case is up right now as a strong case to illustrate Lyme can be contracted in NC. It was presented face-to-face to the director of the NC health dept the other day and we're about to go "headliner" about it with the news.

The guy who is helping with this wants me to be sure my son's case was reported and CDC confirmed and now I'm wondering how to really be sure.

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Tincup
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Big A said... "So does the Health dept then report it to the CDC? Is that the sequence of events? If so, isn't the health dept the one that's falling down on the job?"

The health department in each state is suppose to report Lyme cases that fit the case definition to the CDC.

In NC the surveillance criteria and lab reporting are not the same as in other states.

NC's criteria may not even match the CDC's reporting criteria.

A case of Lyme could be classified as suspect, probable or confirmed.

Only probable or confirmed cases get reported BY the CDC to the public and others.

And if they are saying it is a Maryland case... and you don't have a confirmed rash (seen by a doctor and documented as being a certain size)...

And you don't have a positive western blot...

And you don't have certain symptoms....

It won't be counted by them as a confirmed case no matter how positive the ELISA is.

As far as trying to confirm it was reported to CDC...

The CDC won't release 2009 figures till late 2010. They are always almost a year behind.

In addition, it would be a breech of privacy for them to tell you any confidential information about reported cases of an infectious disease.

Even some health departments and others don't know WHO is reported... just the final numbers.

I would caution this person pushing you and wanting you to go to the newspapers.

I say that because....

YOU will look like a ding dong when ... not if, but when.... the NC Health department replies in a letter to the editor to any article claiming that your case proves Lyme can be contracted in NC.. especially using that one test.

In anyone's eyes that knows Lyme or works within their system... that is NOT proof that Lyme is in NC.

NC Health Deptarment can say it doesn't meet the surveillance criteria.

And they would be correct.

They can say it is a false-positive. They do it all the time.

They can say a Western Blot (two tiered test) would have been needed to confirm it... and for surveillance purposes they are correct... and it wouldn't be reportable.

I just want YOU to not be embarrassed if you try to go public with what is clearly not a "confirmed case" of Lyme disease.

Good to know you are educating yourself before you take that leap.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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