posted
Has anyone anywhere received a "follow-up call" re: their reported Lyme, Erlichia, etc? From their county health department? I got such a call last week and I felt really uncomfortable with the questions the worker was asking. I said fax me the report you have and I will call you next week and we can talk about it.
I don't want to answer their questions until I know how many people receive such calls, how many they will be calling. The call seemed odd/off base. I had a strong feeling that the worker was not familiar with what she was asking.
What's really odd: my Lyme should have been reported in December, 2004 by one of their local doctors, the one who received the CDC positive WB. It was not. My case was reported by one LLMD I saw last summer, and should have been reported by my LLMD in early 2005. The case report faxed to me by the PHD was from my regular LLMD's office. It has no date that I can see other than that the Lyme bull's eye was actually from 8- -2003.
I called the county health department twice last year to ask if my case had ever been reported and they told me; "No, most cases aren't reportable." Now all of a sudden my case surfaces? Had it been "deferred"? The worker said, "It appears the report had been lost..." What happened to the other LLMD's report? Is that going to surface too?
Paranoid? Maybe. If some of you respond with your experiences with the public health department maybe I can calm down. Thanks!
Posts: 422 | From Luck home | Registered: Sep 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
The health department actually care about Lyme disease?
HA! When pigs fly!
I wouldn't worry your pretty little head over anything the health department does at this point.
They have made it clear that they have no interest in Lyme because they have no money to "do" Lyme disease.. and therefore.. they won't lift a finger.
You can fight with them till the cows come home... but chances are it won't do any good. I'm talking from 20 years of experience with them.
ONE way to get their attention about a problem you are having would be to contact their boss.
Call your Governor's office.. and remind them YOU are a voter in their district/state... and you are having a problem and need answers.
Someone there will try to get to the bottom of your problems.. as that is their job. (Don't expect too much though).
BUT...
Nothing more freaky to the health dept. than to get a call for the Governor's office TELLING them what to do and asking for answers.
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
First you would not have gotten a call unless it was positive and reported to them..So at least you are now being counted unlike so many with these diseases.
I had a friend that lives in PA and the health dept here eventually got around to calling her about the diagnosis.
So I think it is pretty much standard proceedure..And they probably do not know what to ask since if they are like the ones here, they do not really know what lyme disease is, heaven forbid a co-infection..
I would also bet money that they can not offer you any medical help..Good luck..But realize you probably know tons more information than they do..Perhaps you can use it as an opportunity to educate someone.
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
I agree with Lymemomtoo. Just answer whatever questions they have to make sure your case gets counted and reported to the CDC.
I would think the logical questions would be, "Do you remember the tickbite and where were you when you received the bite?" -- if you were on vacation or something like that I think the case is supposed to be recorded based on where the bite came from (if you know) -- not based on where you live.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I have no wisdom to offer you, except to say that I would have been freaked out, too. Especially if the questions seemed odd, etc. One never knows who is on the other end of a phone call... I think I'd call to double check that it was indeed the health department and not someone else wanting information...
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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posted
It's good that you asked to see the questions in print. I would be paranoid too. I do know that someone else asked this questions sometime in the past year.
Maybe you could bring it up in a search here??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Hi MJO
Yes, I was contacted about ehrlichia, about 2 years ago. It was about 6 months post diagnosis. And I was a tad paranoid about it after reading here about how state boards go after llmds.
Amusingly, the letter said something about I had a communicable disease that had been reported to them. It was not until I went in, that I found out they were talking about ehrlichia (I had both types).
Yes, you have to be careful, because my experience was they asked inappropriate questions, which I refused to answer.
One question was they asked who diagnosed my lyme (they did not have that on their records, but the dx came up as a part of her asking me how I got ehrlichia). I told her it was not important who diagnosed it, and flatly stated I did not want to answer it.
They wanted to know about meds, and I responded very vaguely, providing just names, not schedule nor quantity, and told them they would have to contact the doctor's office for specifics. (of course, they had no name).
Then they wanted my social security number, but I refused to provide it. Knowing the gov't, I am sure they could find it if they wanted to.
On the positive side, the interviewer seemed quite interested in symptomology, how did it happen, what did it feel like, etc. She stated there were a few other cases in the county.
I mentioned how the public perception is taking lyme too lightly for tx and results of mis-dx, etc., and that it was not just a rash/knee problem, and that it was a disease of the CNS and brain. (I had a captive audience!).
I offered to bring in more info, since she was dealing with agricultural workers and rural lifestyle peoples , and the following week, brought her Burrascano guidelines plus other info from the state lyme disease association.
Recommend: I would be careful, but also use it as an opportunity for education.
Hope this helps.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
Tincup, minimonkey, Lymetutu. You all made me feel better, saying you would have freaked out too!
I agree with "When pigs fly!" Wasn't the CDC grant that changed (read: ridiculously restricted) the WB reporting criteria given to the Association of Territorial Public Health Dep't Officials or something like that?
Yes, there are many things that need to be said to the health department. Maybe this can be an opportunity to educate someone! I will ask for a printed version of their questions after hearing from all of you.
I know in Minnesota at one time the Public Health Department called people and tried to talk them out of their Lyme Disease diagnoses! How's that for on the ball!
I tried searching under Public Health Department but came up empty. Anyone else have time to find the old posting? Thanks all!
Posts: 422 | From Luck home | Registered: Sep 2005
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posted
Northstar. You must have been writing as I was writing this last post. Thank you for your own experience. I will follow your lead. This helps me a lot.
Posts: 422 | From Luck home | Registered: Sep 2005
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
The Chester County Health dept called after Chris's positive babs.(2004)
I was able to engage the nurse in conversation. They seemed to be only interested in "recent" cases. If I remember correctly they were bite and location focused. The fact that he had been sick at least several years and in most likelyhood got it in MD through them. It didn't seem like the answer they were looking for.
Posts: 1572 | From Pa | Registered: Jun 2001
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Sis (with lyme) also got a phone call.
She lived in IL at the time, but got lyme in southern Wis. while at their summer home.
Wisconsin is the state where the first bullseye rash was "discovered"/reported...prior to figuring out the tick and spirochete cause of the unusual rash.
It is also an endemic state.
States don't want their tourist revenues impacted or put fear in the people living there.
They need to be afraid so they will take appropriate PRECAUTIONS when enjoying the outdoors.
An ounce of prevention is worth a pound of cure...or several pounds of cure.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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posted
We got a call from the L.A. County Health Dept. within a couple of weeks of my daughter testing positive for RMSF and valley fever. She got double whammied. Anyways, the case worker wanted to come out and "survey the area" and interview my daughter (13). I told her my daughter could barely lift her head or think and that it would have to be postponed.
The positive test was reported by the lab, not the doctor. I asked if there were any other cases in the area. She told me there was one other teenager who was extremely ill with the same dx. Of course, we were not allowed to have any information on that case.
She never did come out, but did follow up by sending me a standard print out on RMSF information.
Posts: 40 | From Pasadena | Registered: Jun 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Boy, would this have freaked me out, too...and I'm so glad to read people's responses, which seem logical and balanced.
Prior to being dx, I had been in a long-term medical tracking study (women and heart disease). As soon as I had my diagnosis, I dropped out of the study. They wanted too much information about my condition, the doctor treating me, medical records, etc.
They were persistent for several months but finally gave up after I refused to relent.
I think vague is always the best way when it comes to responding to the government. Just my 2-cents!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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