posted
Does anyone know what type of information about a person is sent to the CDC if one has tested positive for Lyme by CDC standards?
Are positive co-infections required to be sent to CDC as well?
Also, does it have a negative impact for the person like with their health insurance, employment, or anything?
Thank you!
Posts: 217 | From Earth | Registered: Feb 2010
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Keebler
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posted
- The doctor is required to report positive CDC tests for lyme. Not for coinfections. And, if not CDC positive, the CDC does not want to know. They have gone to great lengths to close their eyes, that is why they set ridiculous criteria for the test.
And, yes, there can be negative impact for the patient and the doctor. In my state, when one doctor reports a CDC positive to the state, the state actually called them and tried to talk them into changing the dx and dropping the matter.
But, in my state MDs are instructed that there is no lyme here and (if they find the "very rare" glaring bulls eye from a recent bite which "must have been from someone who just returned from a trip out east") they not allowed to treat lyme beyond about nine days. They never heard of coinfections.
When I got my positive lyme test (w/ 2 other + TBD), my MD would not even accept the test. I asked her to at least report it and she refused, saying there is no lyme in our state. So, since no one is ever reported, we have no lyme - the thinking goes.
It's the NDs (naturopathic doctors) who do more tests and they have gotten calls asking the diagnosis to change.
In some states, the health department will call the patient.
Sometimes, this is to confirm what the doctor sent in but there is no reason for this - other than maybe to find out where the bad boy ticks came from.
Often, they will try to find out much more - about how long you've had it, how long and how complex the treatment is for you - and then they clamp down on the doctor as, according to the CDC, there is no such thing as chronic lyme and the IDSA and insurance companies pressure the CDC to pressure doctors into treating only new cases for short time.
* Where did the infected tick find you? If they call you, only give them the date and place where you either know or suspect you were bitten by an infected tick. You might also say if you had coinfections. They do need to know all this. It IS important.
* Symptoms. Do not go into specifics about all your symptoms ("my doctor when over all that - he did a good exam")
If pushed, just stick to the top 2 or 3 but use medical terms and not something like "brain fog" (if you have this set, something like: ("headaches, severe fatigue, pain, trouble walking - really rough stuff" be honest but don't give them a laundry list as that will be to your detriment.)
* When acquired? If you've had this a while ("well, the tests were JUST done, must be new, I guess")-
* Treatment? About treatment methods ("oh, some antibiotic for a little while, whatever my doctor ordered. Oh . . . someone's at my door - gotta go"). The CDC, nor IDSA, nor insurance companies want treatment for more than a couple weeks.
KISS - keep it short and simple. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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I am in Maryland, so not sure how they will handle it.
I was told my doctor is not required to report it to the CDC; however, IGeneX replied to my email saying they are required to let the CDC know.
I'm hoping this is not going to be one big mess. I'm afraid to say anything about it to my other doctors too. This whole controversy thing is NUTS!
Thank you so much for your feedback! I guess I'll just wait and see what happens then.
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Keebler
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- ONLY if CDC positive - but - I now recall just having read that the CDC had either just dropped that or was thinking of drastically changing their reporting system so that fewer cases would be reported.
The reporting change may turning toward reporting of positive test, only for RECENT bites. But I'm not up on proposed or recent changes.
It may be that they only want a positive lyme diagnosis - and one CDC positive test does not equal an IDSA positive lyme diagnosis. Much more is required, so much more that very few would ever meet the criteria.
Still, any CDC requirements would be for all states but each state handles their questioning differently. And, each state can also have different criteria.
In my state there was a criteria with different numbers on it than the CDC criteria. Funny - somewhere in some agency someone put that together but the state medical board had a cow when they found out that had been on the books for many years since they declared this a lyme-free state.
So, back to how important the reporting is. You might ask your state lyme disease group about this. It is good to have each case counted for better monitoring & education/awareness.
This won't be a big mess, however. The CDC really does not WANT to know. Really. And if you raise your hand they really couldn't care less.
Still, if you are puzzled, just ask your doctor again and he will tell you why he said what he did. Let your state or local lyme support groups know - tell your friends and family to be careful out there - and then move on to doing what you need to do so that you can get to the other side of all this.
Hopefully, others will come along to shine more light on this - especially if the reporting system has changed.
[ 04-02-2010, 05:18 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- Relevant thread just posted by hshbmom. See the TWO links there - and check back for replies:
posted
My doctor reported my test, but I never got a call from the state.
It was done through Igenex. Do they only acknowledge Labcorp/Quest? Never done a blot there.
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Keebler
Honored Contributor (25K+ posts)
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- Not everyone gets a call. The calls really are not necessary if the doctor reports where the infected tick was and date of bite, etc.
While some calls are to finish the reporting form, many are to squash the doctors who treat longer than 2 weeks' time. Just one instance: there have been a couple places where, after some patients in an area of the country received calls from their county health boards, that their LLMD was pressured to stop treating lyme patients. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Kday - you may have a point that they only acknowledge Labcorp/Quest as I only had one IgM band present on Labcorp but a month or so later had IGeneX test showing positive IgM and IgG and positive IgM for CDC.
I guess I'll see what happens.
Posts: 217 | From Earth | Registered: Feb 2010
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posted
My state made it laboratory-reportable in 2005. County public health agencies still try to get out of reporting positive results.
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