posted
They called to alert me that I tested positive on a w. blot. I wasn't sure what to say. They already knew who the treating doctor was, but asked me to confirm he was treating me. I said no. Does anyone know what this is about?
Thanks
Posts: 184 | From taking pills | Registered: Oct 2011
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posted
Wow..No but If it were me I wouldn't volunteer any information about my health over the telephone.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A case of lyme is supposed to be reported to the state.
I don't know why the call back as, surely if you saw the doctor, got your tests YOU know.
The calls happens in various places around the U.S. - sometimes state agencies, sometimes county agencies.
Sounds like you are clear as to it being county and hope you got the name of the agency. If you did not write that down, caller ID might help. If you don't have that, if it was the last call to come in on a land-line phone, *69 should be able to give you the last number called in.
[To block your number from their view: *67.)
Call that and ask them for their name and title, just for your records so you know which agency is tracking the advancement of lyme in your area.
Then share with your LLMD. It's important that they are aware of this today, if possible.
You might also share with your local and state lyme support groups so they can prepare others for the call.
Why this call?
Part actual surveillance for their recording purposes (but I actually doubt that as they already have the report), maybe they need the tick's location before it went for a ride with you.
Sometimes such calls seem to want to derail you and your doctor.
I have heard of some such calls leading to LLMDs being challenged for diagnosis or treatment.
I have also heard of patients being asked to deny it, to say they really don't have lyme.
In my state, a doctor who submitted results for a positive western blot was called by a state agency and encouraged to withdraw the report. "There is no lyme in my state" is the official motto. It must have been a false-positive, was the official thought.
You were wise to stay quiet.
Other than in the case of a recent bite and telling them WHERE you got it so that's on the record and (if you had a bulls eye, share that) -- but do not offer the absence of a bulls eye.
I think it's appropriate to just thank them for confirming the information and say something like
"there is no need for all that - just as long as you know there are ticks out there with lyme, I sure hope something might be done to address that."
And, maybe "thanks for your help in promoting lyme awareness so others might avoid it. Goodbye." -
[ 04-23-2012, 04:47 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
thanks guys, yes i got her name. she was a nurse from the county health board. i told her a quick version of my story and said that is all i can tell her. she was adamant about what lab it came from and i told her i prob could get it. but i can't because it has his name on it.
she already knew the llmd. her main concern was to know if i was still in treatment or not. i made it clear that i didn't want to tell her because i didn't want my doctor get into trouble. she knew all my info.
should i really let my llmd know? i have to talk to him tomorrow and im afraid he may drop me or something. he said i'm one of his worst cases...i don't know what to do. probably nothing.
Posts: 184 | From taking pills | Registered: Oct 2011
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
I can't see what you did wrong except get bit by a tick!
I would tell the dr, better he knows who is calling and why.
Just my humble opinion.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Absolutely. Positively. Please tell your LLMD tomorrow, then.
Do not worry about being dropped by him. Not at all. A real LLMD would not drop you for getting a phone call and handling it the best way you could.
First, they are used to this, it's likely happened before but it's just important that he is aware.
It certainly sounds like a fishing expedition and he should know to keep his eyes open. Otherwise, he could be caught off guard and it could mean trouble for him - and for those who depend upon his expertise.
Now, I'd like to think they just want to confirm the lab as one that is certified and that you are getting treatment so you'll get better.
But, this just sounds suspect as, often, if not one of the inferior labs around, they won't accept it . . . and, often, their idea of treatment is one - nine days of a single Rx.
Also, the IDSA does not want doctors treating based on a positive Western Blot unless the ELISA was also positive AND there has been a spinal tap (lumbar puncture) done and was positive.
This is a very rough spot for LLMDs and for anyone dealing with lyme.
I wish you well in just being able to get on with treatment. Glad you have a LLMD. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I am cdc pos and never received a call.Does the lab report to them or the doc?
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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posted
thanks for all the input. i have tested positive every time i've taken an elisa or w. blot so maybe they made the connection. i will let my LLMD know tomorrow.
i'd like to think they wanted to know i was being treated than investigating my doc.
Posts: 184 | From taking pills | Registered: Oct 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Healing in Santa Cruz,
These calls are not that wide-spread. Not every state or county agency does a follow up (or fishing). Of those who do, the intentions vary.
In 19944,
Your local lyme support group may be able to confirm that it was just a friendly call. Hope you can find someone by phone to say that all is well from others' similar calls, perhaps. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
My county mailed forms directly to my LLMD as it was the lab that reported my CDC + test.
Since the lab reported it, they had all of the Dr info and just sent the forms to the Dr's office to be filled out.
Lyme is supposed to be tracked by your State, so hopefully that's all it is.
Posts: 1408 | From Tx | Registered: Nov 2009
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Hmmmmm. Insurance company maybe?
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
More like Big Brother... I've read about this happening here from time to time.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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omg. if they shut this guy down because of me, i will feel terrible. the more i think about the conversation, she was kinda cold, but she started off by saying "this is so and so from the portage county health department and i wanted to inform you that you tested positive for two bands on your western blot".
im not even CDC positive, but she sounded very much like she wanted to alert me so i could get treatment. on the other hand her main concern was if i was still being treated and who the physician was, even though she mentioned his name.
this whole thing is a friggin mess, it's like my whole life revolves around this disease. just sick of it, literally.
Posts: 184 | From taking pills | Registered: Oct 2011
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posted
The very first tick panel my doctor did that SAVED my life was positive for Ehrlichiosis. The county health department did call me. I asked why...they said it was because it was because it was cdc positive.
They asked questions like where had I been bitten..Wanted to know if I had traveled out of the area. I told them I had had tick bites all my life...didn't remember the LAST time. That at was over 4 years ago & of couse I know a lot more now...after finding a LLMD & a western blot.
Posts: 75 | From Missouri | Registered: Apr 2009
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Kind of makes you wonder why they are spending money calling people if these tickborne diseases are "Hard to catch, easy to cure...".
Unbelievable...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
My son and I (live in same house and same county) both tested positive. For him, we received notification from the county board of Health. For me, notification was never sent. I am guessing the doctor actually reported it for one case and my doc (a different one), did not. Never received any phone calls, only snail mail.
This is a perfect case to illustrate that the information gathered and reported to the CDC is very inaccurate.
Posts: 749 | From State full of ticks | Registered: Dec 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In19944,
Hope your appt./conversation went well today. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Thanks Keebler, still waiting on his phone call. These guys are rock stars. Posts: 184 | From taking pills | Registered: Oct 2011
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