posted
Thought I wouls share our recent experience with both the California Public Health and our local County Board.
It is California law that all labs report any positive test results for infectious diseases. Our daughter recently tested positive for Lyme, Babesia & Bartonella.
IGeneX complied with state and law and reported our daughter's results. Apparently the state board then reports the findings to the local county Public Health Dept.
We received a phone call from the county office this morning. The essence of the phone call was to inquire where our daughter may have contracted the disease.
We reported to them that it was our opinion that she had been bitten by a tick here in the county in 1996.
The person on the phone stated that that was not possible. That if she had not been bitten within the past 90 days, she couldn't possibly have contracted Lyme.
I attempted to explain to her the actual truth of our daughter's illness and her other test results. I felt like I was talking to a wall.
We're not sure what will come of this reporting, but it was quite frustrating.
Posts: 681 | From California | Registered: Oct 2005
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posted
As usual, they don't have a clue. Wonder if they will try to discount the case on that basis? Not surprising then that the reporting stats are so misleading.
Posts: 8430 | From Not available | Registered: Oct 2000
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
You might want to call your local state representitive or the senator's office and complain about that and see if they can follow it up and see if they are reporting all reports. If they are not reporting it it is against the law.
If you're persistant it could lead to better reporting throughout the state and save us all a lot of greif. I'm in Ca but can't do it as it doesn't effect me personally.
I have much better luck with things calling my state rep, but I don't know yours.
I don't know why but a lot of laws that pass in Ca have to have this sort of followup before local officials get it through their heads and look at the regulations.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Hadn't thought of that slant on things. Leave it to the CA DHS!
I agree with caat. If you can take the time, you might want to contact your representative.
I know that they are tring to deal with this as current epidemic. They want to find out where the infected ticks are NOW, and make something happen. I don't know if they are required to report it as a CDC positive. I think it still has to fit the CDC case definition. But I don't remember that definition including a RECENT tick bite.
Lymedad, you might also want to contact CALDA and tell them about this. we need to keep dogging this until things come up right. It may just be a matter of training the help.
lymebrat
Frequent Contributor (1K+ posts)
Member # 3208
posted
Hey Lymedad,
Sadly, it doesn't surprise me..
I had to report my doctor as he didn't even report my positive lyme to the CDD or state our state health board. He even took a picture of my leg as he said it was a perfect bully-eye.
It's sad so many people are ignorant about lyme..
~Lymebrat
Posts: 3154 | From NH , USA | Registered: Oct 2002
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quote:Originally posted by lymedad: We received a phone call from the county office this morning. The essence of the phone call was to inquire where our daughter may have contracted the disease.
weird, what county? I'm in san francisco (most recent test) though I initially tested positive while I lived in san mateo...I haven't gotten any phone calls.
Interesting they followed up. Really bad they don't listen, it's a waste of their time and adds stress you don't need. I agree you should contact your state representitive as sometimes they can actually do something.
Posts: 207 | From san francisco, ca | Registered: Mar 2005
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Michelle M
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Member # 7200
posted
Does IGeneX report these to the appropriate state? Or just collect the data and let it to the docs to report?
Both me and my daughter (13) were CDC-positive. We live in Northern California where they "don't have any Lyme disease." Ha ha ha ha.
I contacted our local Health Department myself and told them about it, as well as telling them about my horrible neurologist who refused to do anything further than an ELISA. I told them to please, please, please be thinking hard about it when people present with symptoms of Lyme but a negative ELISA, and to please not dismiss them out of hand.
This makes me realize now I need to get back to work and follow up on whether they ever received our test results or not.
Sorry you're running into such idiots, Lymedad. It's unfortunately very commonplace. Keep educating yourself and you will be ready to educate people like her, as she sorely needs. (THIS person is working for a County health office? Write a letter and send them some good research articles.)
Does anyone have a link to the rule or law that states that doctors themselves are required to report this?
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Michele, the law changed this summer, and labs are now required to report positive Lyme tests, along with several others, directly to the DHS.
We fought hard to get this passed, because so many doctors never reported positives. We are still being undermined, obviously.
posted
Does Igenex have to report test results that they call positive, or just ones that meet the CDC criteria for positive?
Where are privacy rights in all this, anyway? If someone tested positive for HIV, and the lab informed the county government, who then called the patient at home, I would think the patient would consider that a violation of their privacy rights.
Forgive me for being dumb about this, but what is your hope--that by educating gov't about Lyme, they will then more intelligently regulate insurance companies into better covering treatment, or what?
Posts: 204 | Registered: Jan 2005
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posted
It was apparent from our conversation with the county public health dept that they were interested primarily in the geographic location of where the tick bite occurred.
They wanted to know the area where my daughter was camping and they also wanted to hear about her symptoms. However once they heard that the tick bite took place over 5 years ago, they seemed to discount the diagnosis.
I plan to follow-up with them later this week. I'm very interested in getting a copy of the report they send to the state.
Posts: 681 | From California | Registered: Oct 2005
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Lyme disease has always been a reportable disease. Up until now, it was dependant on the doctors to report the positive cases. Because of the time and paperwork involved, it often didn't happen.
The number of cases logged in with the Department of Health, and, ultimately, with the CDC, is what matters as to how much time, energy, and funding goes toward fighting Lyme disease. As long as they can claim this is a rare illness, we aren't going to get much help.
The labs are only required to report positives by CDC standards, as far as I know. And this is not just Igenex, this is all labs testing CA patients.
I don't remember the exact numbers, but one of the east coast states, when it went from doctor reporting to lab reporting, had an increase in cases by over 1000 times as many cases. That is a HUGE increase. If we started showing that kind of increase, we could get some attention.
Then we could get funding, doctors would no longer be able to claim it doesn't exist here, insurance companies could be required to cover treatment. This is important!
Privacy laws are still respected. It is only within the DHS that the reporting is covered, which is within the law. this is not just random. However, it sounds like some training needs to occur.
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