This past Tuesday, when I was at school, my Mom recieved a call from The Placer County (I live in Placer County, CA) Dept. Of Public Health Nurse DEMANDING to speak with me. Since I am 18, my mother is no longer able to discuss things with others on my behalf. According to her, this woman was very pushy and extremely curt. I see Dr. S in San Francisco, CA, and I am scared that this could be a the start or part of a witch hunt to go after him. You never know with the government. I called Dr. S's Office and they have NEVER, EVER heard of this happening where the health department actually calls the patient directly. I need my mind to be put at ease, so PLEASE, if you have had a similar situation happen, reply to this message! -Thanks Posts: 227 | From CA | Registered: Apr 2004
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I personally have not had this happen but I've read of others here who have had the health dept. call regarding a CDC positive lyme test. I think I read someone say they got a call about babs but I'm not absolutely sure about the babs.
You did the right thing in calling the doctors office to let them know. It probably is just the county making a routine call though so don't worry too much.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I'm not sure about your state, but in Iowa, the county nurses have to call and gather information on reportable diseases. They have a long list of questions depending on the disease. I have talk to them for my case of mumps 2 years ago and just recently for the Erhlichiosis. I did not meet Iowa Standards for Lyme so that was not reported. Luckily, one of our county nurses is a good friend so she called both times.
There isn't any reason why your caller should be rude-if she is, tell her you are to sick to talk and ask her you will call back later. Get her name and phone number and report the rudness to her supervisor. This is also a way to check if the caller is legit.
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I received a call like this as well, and I'm also in CA. I was not CDC positive so was surprised. I gave the nurse (who was very nice) an earful about how we certainly have Lyme in this state, and about the shameful state of the healthcare system as regards. She was very interested.
Just make sure not to tell them who is treating you! Posts: 3528 | From US | Registered: Apr 2007
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi K,
...sounds like you might be inducted into the CDC positive club.
I received a call from the health department six months after I had a CDC positive Western blot test for Lyme disease.
She's probably calling to question you about your test results and recent illness.
Are you sure your results aren't CDC positive? Did you get a copy of your test results?
You need the official lab report form, not just the doctor's report that says "Your recent test results were normal." If you don't have a copy, get it now.
I don't think they'd bother calling you unless your test was positive.
The health department asked me all the questions on the Lyme Disease Report Form. Do some googling ...plug in your state name, and Lyme Disease Report Form and see if you can find your state's official form. You may find it through your state health department web site. Look for reportable diseases and forms.
All the questions are on the form.
Did you have a tick bite? Did you have a rash? Did you receive treatment? What treatment did you receive? medicine & dose Were you pregnant?
I may have forgotten a few questions.
I wouldn't answer any questions that aren't on that form.
Did you happen to have a rash after a tick bite? ...did you take a photo of the rash?
Did you see a physician immediately if you had a rash? Do you have a copy of the doctor's notes if you had a rash? What diagnosis was made, what comment was made about your rash?
They already have the lab report, so you don't have to tell them what lab was used. Many state health departments don't believe you could have Lyme, so they'll use anything questionable you say to determine you couldn't possibly have Lyme.
I had photos of my rash as it enlarged; I also had a copy of the doctor's notes that said "Tick bite. Rash" The photos helped the health department representative decide to classify my case as probable. I think it should have been a confirmed case with all the evidence I had, but that's a moot point now.
The health department classifies Lyme disease cases as confirmed, probable, and suspect. Only confirmed and probable cases are added to the official surveillance statistics.
I was classified as a probable case, and my husband as a suspect case. I was never added to the official count because they waited so long to contact me. After 6 months they refused to amend the record for 2006.
That's one way to keep the case count low.
BTW, you can give your mother permission to talk to the health department on your behalf. You can sign a paper authorizing this. It's a good thing to have, otherwise, if you were incapacitated for any reason, your mom would have no say in your treatment and they would not give her any information about you.
Everyone should have a medical power of attorney form. This is a paper stating who you want to receive any medical information or who you authorize to make medical decisions in the event you were unable to do so. You can designate an adult or 2 or 3 that you would trust with your life.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Remember, we want our health departments paying attention to Lyme. They are the ones who are crunching the numbers to look at the incidence and if the numbers are high it helps get research money and media attention.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Please remember that you live in a free country, and you can decline answering any question(s) you feel uncomfortable with. "I would prefer not to answer that question". If they ask you why, "That isn't relevant", etc.
When people are young, especially women, often older people in positions of power push us in uncomfortable ways, and we feel we have to comply.
If someone does patronize you: make it clear that their behaviour is unacceptable, which can be done firmly and respectfully; that this kind of behaviour is to be rejected in this world, because it is wrong, and you're going to exemplify this correction.
This is one aspect of what this illness taught me. I put up with zero now (OK, near zero, but I'm narrowing in on zero), and I'm 39. There was every reason for me to require respect when I was 18. Just being born is enough, for that matter.
I don't know if this is relevant to you, but I'm betting it is relevant to a few on this board, so I'm sending it out there.
Please let us know whether you decide to speak with Public Health, and how it goes.
Best wishes,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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tailz
Unregistered
posted
Nobody ever called me about my postive Lyme and babesia, and one even came from Quest. Did they eat my results?
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I received calls from my Health Department.
My daughter and I both were CDC positive.
I thought it was a good learning opportunity for our health nurse, who didn't think lyme was prevalent here.
I gave her not only the answers to her questions, but an earful on how the local neurologist consistently misdiagnoses people, and if he had any clue what he was doing, there'd be a lot MORE cases of lyme!!
She seemed very impressed and interested. It is hard for them to argue with CDC positive, especially two in one household. I told her the pitfalls of ELISA testing and how many people slip through the cracks.
Look at it as an educational opportunity!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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echostef
Unregistered
posted
I received a call from my county's health department several days after my Western Blot came back positive. They called because they track Lyme Disease and all other communicable diseases. I hadn't even found an LLMD yet. The neurologist who ordered my test (not because he thought I had Lyme, but because I demanded to be tested for it) said that all my test results were sent to the county I live in before he even got them back. He said Labcorp was required by law, regardless of HIPAA, to send all positive Lyme test results to the county in which the infected person lives. They didn't ask me anything about my doctor or what my treatment plans were. They were more concerned with when and where I was infected and what my symptoms were. I was happy to answer their questions. The more verified cases the government receives, the better. Hopefully one day they will realize that Lyme Disease needs a lot more recognition than it currently gets. Stefanie
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Itsy_bitsyone
Unregistered
posted
I got a call. In my case the woman was very nice and did tell me that I didn't HAVE to answer her questions, but it was just information gathering.
I was glad to answer her questions.
And glad to be part of the state's reporting process.
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posted
I got a call also after I got a positive CDC WB...
Posts: 983 | From The sky | Registered: Feb 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I was reportable on Babesiosis & never got a call.
I'm curious, has anyone verified that the calls were indeed from the County Health Department by obtaining name, telephone # & extension of person calling & then looking up the number yourself before calling back?
I'm paranoid with incoming calls because I've had people call trying to run scams.
It could even be someone from an insurance company or something trying to gain information they can somehow use to refute claims, who knows?
Sometimes going that extra step can keep you from having problems that you wouldn't even realize that your trusting cooperation may have caused.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
I did that AliG
Posts: 983 | From The sky | Registered: Feb 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by AliG: I was reportable on Babesiosis & never got a call.
Same here - positive for babesia WA-1.
I found where babesiosis is a reportable disease in California.
However, I'm not sure labs are required to report it. I reported it myself to my County, to improve their admittedly limited knowledge. In fact, they had never even HEARD of babesia and it took them many calls to even figure out how to deal with it!
I concur that letting our health departments know is a GOOD thing.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Thank you so very much for your replies. For all who have asked if I am sure that I've tested positive or CDC positive for TBD's, let me give you a quick little background on me: I have been sick for five years, tested positive for Lyme & Bartonella first, then a short time later came up positive for Babesia Microti, and about a year ago came up positive for Ehrlichia and Babesia Ducani. I believe over this half a decade, I have test positive for these 5 diseases on and off by both Igenex/Lyme Disease Community Standards and CDC Standards. Possibly, maybe the reason that I've been put on the Health Department's Map is that 2 out of the 3 times that I have been tested for B. Ducani, my results have been reported to the Health Dept. and a semi big deal was made of it (but NO ONE ever called me up). Also, to those of you who have questioned why I wouldn't want to speak to the health department and be a part of opening their "big eyes" to this problem, don't get me wrong, I am one of those people who'll belly up to the podium first and speak for a cause. BUT, when a Dr., Dr. S, who has been in business for a HELL of a long time, has never heard of a patient being contacted directly by a Heath Department regarding a positive test when, by the way, by CA Law, they have faxed the confidential forms, which only they can fill out, to the authorities regarding my health. Again, by california law, this is the ONLY information they need, and health departments do have access to it. Also, As a matter of fact, I have read stories from people posted on this website and other websites about health departments in their state where they live wanting to make trouble for them and their doctor, hence the witch hunt. I mean, these nurses come out to people houses and will stop at nothing to get what they want! To Conclude, I think that most of the time, Health Departments have good intentions and just want to make sure that who ever is sick gets the care they need and that their illness is properly reported in case stats. But, and a man that I spoke with at Dr. S's office who has worked there a long time agreed with me, when the nurses deviate from state law protocol, they are usually up to no good, and this is again what scares the $H!T out of me. I don't need more problems......these diseases that I have are certainly problem enough!
Before I go, I also want to thank those of you who see beyond my age and have treated me as an equal through your messages. I may be 18, but it wasn't that long ago that I was considered a child, and in some ways I still am. With that said, I appreciate so very much that you all have not talked down to me.
-Thanks Again!
Posts: 227 | From CA | Registered: Apr 2004
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posted
I'm glad to see that I'm not the only one that answered the health dept's questions. I was worried that I might have done something wrong. Now I'm thinking it was okay that I talked to the health dept when they called. The lady I talked to seemed nice. Just wanted to know my symptoms. She said it was so they could track certain diseases. Hopefully it does some good.
Posts: 248 | From Tejas | Registered: Jun 2007
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posted
When my tests came back positive, my dr told me to expect a call from the health dept. . Isn't that how they find out in the first place......from your dr.? They did call and it was probably within a week of the test results.
Posts: 158 | From PA. | Registered: Jul 2006
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posted
I got an official letter from our state regarding the postive lyme test. I was thinking of making a copy of it and sending it to all the drs who said it was just anxiety. Maybe Ill frame it and hang it on the wall as a reminder of the good fight...and maybe, if God willing...I can use it to start a fire when Im completely healed.
Posts: 514 | From . | Registered: Apr 2008
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lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
Hi!
A few years ago when I was living in ND, my physician was concerned about intestinal parasites and we did a test. Surprisingly, it turned o9ut that I had Giardia.
I was very surprised to get a call from the Healthy Dept BEFORE I ever heard from my doctor......all labs must report such things to the Health Dept....so it seems with Lyme too.
It was pretty shocking to hear from the Health Dept!!
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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posted
We got a call also. IGenex is required to report all positive results.
Thing is - you don't REALLY know who you are talking to. I didn't give them any information because my doctor will (and did) get a form in the mail to fill out with all info they need.
Just something to think about. Why a phone call? To the patient? I don't think information from a patient will become part of a statistic on Lyme Disease.
Peedie
Posts: 641 | From So. CA | Registered: May 2008
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posted
why not tell them to send you what they need to know in writing.
that will keep you from talking to anyone untoward, hold them accountable to what they are doing, and give you a chance to get help with it if necessary.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
I'm CDC positive and the exact same state dept of health/infections diseases, epidemiology division called me and asked me all kinds of questions.
My LLMD knew about this and even knew the name already of the person who called me without me mentioning it.
I wouldn't worry. Just don't mention the docs name.
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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posted
Impressed with the quality of the responses on this thread.
The only thing I would wonder about is whether they should be asking about treatment. I don't think it would be a good thing to go into treatments for chronic lyme with the health dept. At this point, they are not on our side.
As for reportable diseases, lyme is nationally reportable and so is ehrlichiosis, but babesia is only reportable in a few states (like CA).
Are you sure you understood correctly that Dr. S never heard of a patient being contacted by health dept.? This might be worth double checking, because it seems unlikely.
Posts: 8430 | From Not available | Registered: Oct 2000
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