THE FLORIDA DEPT OF INFECTIOUS DISEASES, EPIDEMIOLOGY DIVISION. Has this happened to anyone else? This is turning out to be a nightmare. Listen to this.
I answer the phone today. The guy states who he is and where he's from but I wasn't paying attention because the FL state HWY patrol guys just called and asked for money (again), so I figured it was them again.
Then, this guy starts talking to me about IGG responses and I stopped dead in my tracks. I said, "WHAT??? WHO IS THIS?" Then he said where he was from again and I heard it loud and clear.
THE FLORIDA DEPT OF INFECTIOUS DISEASES, EPIDEMIOLOGY DIVISION. He said they got my results in from the CDC???? He called my doctor for my information!!!!
He asked if I have gotten tested AGAIN with a WESTERN BLOT. He told me that since I just got bit in January that I need to have a 3rd test to confirm that I do have Lyme. He said if I don't have an IGG response on my next Western Blot they will not consider it Lyme. HELP!
I feel like I am trapped in a nightmare.
I got so upset. I was on the phone with him for about 30 minutes, at least. I told him that from my experience since coming down with this illness that some people aren't getting IGG responses and are only positive on the IGM side, vise versa, or NOT AT ALL.
He asked how big was my bull's eye rash. I said I didn't have one, just a funky bite on a tattoo, and I couldn't have seen it good if I wanted to.
He says that if I didn't have a bull's eye rash, then I didn't have Lyme.
I asked, "Are you aware that probably 50% of people don't get bull's eye rashes???" He said, "OFF THE RECORD, YES...ON THE RECORD, NO"
He says, "What kind of tick bit you?" I said, "I didn't ever see a tick"
He said, "It really doesn't matter because we don't have the kind of ticks in FL that spread Lyme Disease."
I asked, "How is that?" He said, "They only come from up North? and feed on deer and we don't have those deer in FL."
I said, "That's not true. When we lived in Ruskin (More of a highly wooded area compared to the city) I saw a deer."
He said, "You may have saw a deer. But I guarantee you that it wasn't the right kind of deer, I'm talking about the White Tailed Deer"
I said, "You are telling me that I didn't have enough Western Blots with enough positives, we don't have those ticks here, we don't have those deer here, I said I am SICK, I hurt, I'm in physical hell. I've had every other test in the world. You are telling me that I don't have Lyme and that I'm just crazy?"
He said that there are "some" cases of Lyme but it's highly unusual. He said "OFF the record", the state of FL. knows something is going on because it is getting flooded with IGM positive tests but we don't have the right ticks down here to produce such of a high rate of positives.
I told him, "GUESS WHAT MISTER, I NEVER SAW A TICK BUT SURE SAW A ****LOAD OF MOSQUITOES AND I DON'T THINK YOUR MIND CAN COMPREHEND THAT, SO KEEP LOOKING FOR YOUR ELUSIVE TICKS."
There was much more to our conversation but I'm so frazzled right now I can't think straight.
He asked me to go get the 3rd Western Blot done. If it comes back without an IGG response they aren't going to consider it Lyme. WHAT SHOULD I DO? Help!
In the other parts of our conversation, I told the stories of some of you. I told him my story. How my life is in ruin.
My physical health, our finances, my relationships with family, everything has been impacted. My life has been stolen away as I knew it. I told him it even hurts to smile at my son. I hurt so bad I don't want to move. Intense pain.
I told him that this isn't some old person who is depressed. I told him before I got bit, I was vibrant, funny, fiery, only married for 3 years, a barely 2 year old, my whole life ahead of me, not depressed, nothing.
I got bit and my life was stolen away. WHATEVER bit me took more than my blood that day. My life.
I told him how we pay $300/mo for health insurance, only to find out that regular doctors won't treat me...unless they treat me like **** and then they send me on my way! I pay all of that money a month for insurance, only to find out that I will have to pay THOUSANDS OUT OF POCKET THAT I DON'T HAVE to doctors who are familiar with and who treat Lyme, in hopes of getting better.
He says, "What kind of doctors are those again?" I said, "Lyme literate doctors, do you know who they are?" He said, "Yes, those are the PEOPLE WHO HAVE STUDIED THIS A WHOLE LOT LONGER THAN US."
I said "Maybe you guys should study it instead of taking the time to call people to convince others that they don't."
He asked me AGAIN if I could please go get tested again. He said that he has to have this data so that he can "jump through the hoops for his job".
I ended the call with saying, "I'll get your test and I'll jump through your hoop if you jump through mine."
I asked him to tell my story (I was on the phone with him for a while and after a while he seemed to break down a bit) because my story, my pain, my financial ruin, is the stories of thousands of people who hurt in this country!
He said he promised.
What would you all do though??? I'm freaked out. I feel so weird. Wow, if I don't have LYME, YOU PEOPLE ARE SURE AFRAID OF WHATEVER IT IS THAT I HAVE!
Going to a lot of trouble to convince me I don't. You know in the beginning, some of this, has been almost too unbelievable. I almost thought that some of this was just for conspiracy theorists at first.
Now I believe it. I believe it all. However this is pretty unbelievable!!!!!! My mom is just in shock...about all of this. How I've been treated from doctors, the injustice of the money I have to spend to get better, the doctors that get in trouble for making us better, the people who call me on the phone to convince me I'm not sick.
WTH???
Posted by seibertneurolyme (Member # 6416) on :
If there is any way you can get the 3rd test then I would do it.
It will not effect your treatment with an LLMD.
The reason to get the test is in the hopes that you will test CDC positive so you will be counted as a Lyme patient from the state of Florida.
Without a positive test you are invisible as far as the state and CDC is concerned.
It sounds like the guy may actually be hoping you test positive.
Just think of the test as your contribution to the education of all those duck docs who say there is no Lyme in Florida etc...
Maybe you will luck out and get a positive test. A positive test would make your life easier in the future when dealing with insurance companies for example.
Bea Seibert
Posted by Geneal (Member # 10375) on :
I wouldn't get another WB....especially for the epidemiological agency calling you.
You need to be very careful about talking to anyone about confidential health records.
He can promise you the moon....but as you don't have the ticks that carry Lyme there....
Well. It seems to me that he is trying to convince you that you don't have Lyme.
It is after all a clinical diagnosis.
I wished I were CDC positive for Lyme only so that our numbers would increase in our state.
Only for that reason though.
My personal opinion would be to not talk to this person again.
Why do you have to prove anything?
Sounds awfully fishy to me.
Hang in there.
Hugs,
Geneal
Posted by Peacesoul (Member # 13709) on :
If one tests + in Canada, the dr, is my law, obligated to report it to the government.
I think you did good with the convo, though off the record info will be ignored. I wouldn't waste my time getting a 3rd test unless they want to pay for it and listen to EVERYTHING I have to say ON THE RECORD!
Posted by cactus (Member # 7347) on :
I agree with Geneal 100%. Be cautious about discussing your personal health records with any one who calls.
Just as you would not give out your financial info to anyone who calls your home, I think your private health records are just that - private.
If they need something from you, they can send it to you in writing, and you can decide to provide them (or not provide them) the information at your discretion.
But a phone call is way out of line, especially now when we are cautioned over and over not to give out financial info to callers as we don't know who is on the other end of the line. The same holds true for our health records, in my book.
My guess is that the state of FL has an interest in "proving" that you don't have Lyme, because they don't want to have any reported cases on record.
As for the "we don't have those types of deer" line... Ticks are simply not that discriminating when choosing their blood meal - there are rodents, mice and other small animals in FL, all of which can carry and transmit Lyme to the ticks that bite them and then bite you. And of course, birds can carry anything anywhere.
So sorry you had to deal with this, on top of everything else.
Posted by Melanie Reber (Member # 3707) on :
Do a search on Ixodes scapularis and Florida...you will easily enough find out that indeed, Florida DOES have 'lyme ticks'.
Ixodes scapularis (formerly Ixodes dammini)- Black-legged tick, Deer tick or Bear tick
Posted by NJLyme82 (Member # 15683) on :
Wow there is some shady business going on here.
I don't think there is anything that you can personally gain from doing another test. I wouldn't do it.
While it is true that it will help the statistics, they are still going to miss the majority of the cases.
The much larger issue is that they don't believe they have the ticks and their definition of Lyme is all out of whack.
I think you handled the call very well. I'm sure if this guy makes these calls all day it was really an eye opening experience for him and he probably got an earful from a lot of people.
The situation for Lyme patients is f'ed up in so many ways.
I really feel for you.
Posted by Nessa1815 (Member # 15697) on :
seibertneurolyme: I HAVE gotten a CDC positive test from Labcorp! Completely positive. That's why he called.
Posted by cantgiveupyet (Member # 8165) on :
nessa did you have IGM and IGG CDC positive?
You held your own during that call despite the horrific pain you are in, kudos to you.
Im in PA so its like no big deal when one of us tests positive, its kind of expected in this area. Yet NO dr but LLMD know what you have when all of a sudden you just loose the life you had.
If you tested positive IGM and IGG i would not test again.
Posted by lymie_in_md (Member # 14197) on :
Nessa -- only get the test if you can choose the lab and they pay for it. You might be able to negotiate to get information usefull to you for your records on their dime. You can say you don't trust their lab based on the Atty General in Connecticut investigating conflict of interest at the IDSA. If they don't comply with your request, well you did the best you could, then don't take their test unless they comply with your wishes.
Posted by AliG (Member # 9734) on :
quote:Originally posted by Nessa1815: I HAVE gotten a CDC positive test from Labcorp! Completely positive. That's why he called.
You do realize that a CDC positive test from Labcorp pretty much makes you a freak. You say you had TWO?!!!
Labcorp must have had some new hires that don't know how to properly screw up the tests yet.
(Sorry, I couldn't resist :rolleyes)
It was probably McSweegan calling you. LOL
As far as I know, the CDC has no such 3 blot requirement.
Posted by Cold Feet (Member # 9882) on :
Did you get the phone number? Caller ID? If this happens, I would insist on getting the caller's number -- then calling them back after I get their name, organization, reason for calling...
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
However, even if they do admit you have lyme (after you provide another test),
that would not alter their thinking about the time-line or short treatment.
And, I wonder just who exactly is calling, some poor kid given a script with all their pat answers and making minimum wage?
Why would the CDC not have contacted your doctor's office?
Although you doctor would have reported it, I still think your name and contact information should NOT have gone to them. It is an invasion of privacy and if, in the future they admit to the seriousness of this, that information could be used by anyone and could affect you in many ways.
--
At least your doctor reported it (still, your name should have been omited). When I had positive Igenex Western Blot for Bb, and babesia and MHE (Erhlichia), my doctor would not even take the papers from me.
I mentioned that she should at least report it and she repeated "we do not have lyme in [my state]" with hands in pockets and turned away.
-
Posted by Keebler (Member # 12673) on :
-
*69 will show what the last caller's number was - if you don't have caller ID.
He may have given you a different contact number.
-
Posted by Larkspur (Member # 5131) on :
This just seems odd to me...I too would not give out personal health info over the phone...
Whatever they want from you should at least have been put in writing if it is "above board"
Did you get his name? I would call the agency on Mon and make sure he's legit
Do you feel like he was harrassing you?
Posted by Nessa1815 (Member # 15697) on :
On the caller ID it said who it was, kinda...you know how when the caller ID screen on your cordless phone cuts it off a little bit? But it did say the FL. Dept of Inf or something like that. I got the number, didn't get the name, but it was definitely legit. I have no doubts about that. I have no doubts whatsoever that this wasn't legit. I still have the number. I can even take a pic of it if you want to prove it, lol.
I believe it was totally legit and I wouldn't give out my personal info, but quite frankly, I didn't. I just told him my story, and that couldn't hurt anything. I will write down the number where he called from if you want me to.
Posted by radfaraf (Member # 11909) on :
How are you realisticly going to know if he did his end of the bargain though?
It sounds like he would be able to tell if you did yours, but no way for you to tell if he did what he promised.
I would have demanded he explain in 100% detail of exactly why he needs you to get tested again and if it is so damn important than maybe he should pay for both the test and your treatment.
Posted by djf2005 (Member # 11449) on :
man i wish someone like that would call ME.
i would have a thing or two to tell them.
oh great ones from the cdc....
glad you held your own.
dotn worry about it. if you have a llmd, its just !@#$ in the wind.
cheers
derek
Posted by Tincup (Member # 5829) on :
Hey Nessa...
To have a case reported they must contact the person to get additional information. Obviously your lab reports went in without a doctors report.. so to make you a "reportable cases" they need to fill in all the paper work.
They do NOT have to have a third test though. I would NOT do it.
What they want is to have your blood to send to their lab to discount the case.
If you email me the information I will contact them myself and find out what is going on.
More than happy to help and since I am in FL.... won't have any problems doing it.
I also have documentation of Lyme being found in ticks in Florida and in what areas.... and I will be happy to officially set them straight.
What an *** !!!! Areas in the NE do not have deer but they sure as hell have MICE and BIRDS!!! Does this moron think deer from Ct. take vacations in Florida? THE FREAKIN' BIRDS spread the disease!
Please get your THIRD(!!!) WB done by Igenex...that should put this fool to rest.
The most important part of this has been a bit lost...we all hope YOU get better!
Lyme 14 years, Oligoclonal Antibodies in my Spinal Fluid, 3 years. Still fighting!
Peace, Love and Wellness, JRW
Posted by sparkle7 (Member # 10397) on :
I wouldn't co-operate. I'd tell them to fuxk themselves!
What a joke. And people still don't think this is a bio-engineered weapon...
Sorry for your pain, Nessa. Many of us have been going through this.
How much is the Western Blot? And you're supposed to pay for it...? To prove what?
Now you have all this on your medical records... What do you suppose they may do with this info in the future? Not a nice picture.
BTW - this has happened to others here. Medical records are supposed to be private. Behind the scenes they are acting as if we have AIDS but in the media it's just a flu...
Not good - but many of us already know this.
Posted by Paula 007 (Member # 8002) on :
Cool! You're from Tampa. My husband and I are from Lakeland. I got bit at Lake Kissimmee State Park. My doctor didn't know what the bull's eye rash was, and I didn't either - 15 years ago.
When I was finally diagnosed 5 years ago, they called me too. Said I would be countable because you have to be within 6 weeks of the bite and have the bull's eye rash. Or be at death's door.
I wrote the CDC in Atlanta. A very nice lady called me at home that night and I asked her if they were "doing it right" by not counting me.
She said that 'unfortunately, each state sets it's own reporting criteria'.
I believe Florida has set this criteria - nice to know they haven't changed - because of tourism. I still have one old doc that says, 'let's see, Lyme, you got that where up North?'.
My husband has Lyme now. He got it from me. And we know other couples in the same boat. Of course, he's not reportable.
We go out-of-state for treatment.
Welcome, one and all, to Disney World.
Posted by Paula 007 (Member # 8002) on :
Nessa, I almost forgot (do that alot). I called them back numerous times. I was determined to "change this world" about Lyme acceptance - at least in my home state of Florida.
But I had to give up. They are really determined not to count us.
They get your name from your doctor - he reports you to the Health Department. My first call was from the Health Department. They told me to expect a call from the Epidemiology and whatever BS.
Lord, it's been so long ago, I had almost forgotten the river I cried over that one.
Nessa, just work on getting well. Forget people who do not want to encourage you. They have their own agenda, and it doesn't involve us - unless they can make us a statistic.
Keep the faith!
Posted by groovy2 (Member # 6304) on :
I remember somebody else got a call like this about 6 months ago and wrote about it on LN-
I think they had a positive test also -
maybe call them back on Monday - so you will have Better Control of the situation -
I would not say anything about your treatment details - (meds taken -- Amounts ect )
It could be that the state sees a increase in positives and wants to double check to see if the rise in infections is really happening-
In Texas ALL positive tests are to be reported to some official --
When I first figured out that I had lyme - I called the state disease office in Austin ?
I spoke with a lady whose department handled this type stuff -
I asked about Lyme in Austin and she said there was 3 positives in the county that year- No Big Deal -its Not around Austin -
Yada yada yada -Bla Bal Bla -Yada Yada
I got bit in Austin 16 yrs earlier - about 5 miles from her office location --
Wish I had remembered to tell her that - --Jay--
Posted by Marnie (Member # 773) on :
Knowing what I know now...I would have simply started a tape recorder FIRST and then said, "This conversation is being recorded for educational and training purposes."
And if the conversation continued as you described above, I would give the tape to...
along with facts.
Posted by RoadRunner (Member # 380) on :
Don't and I repeat don't do the test!!
RR
Posted by hcconn22 (Member # 5263) on :
This is the strangest story/phone call I have ever heard of. I agree with all of the above--- I would not share any info-- your test is your test.
Tincup would be a good person to call for you.
I thought there was a fair amount of cases in FL, or are they just trying to deny or knock down the numbers.
Really your health and confidential info is really no one else's business- especially State Bean counters.
Get their name and number AND HAVE THEM MAKE THE REQUEST IN WRITING.... then dont do anything.
Posted by bettyg (Member # 6147) on :
quote:Originally posted by Marnie:
Knowing what I know now...I would have simply started a tape recorder FIRST and then said, "This conversation is being recorded for educational and training purposes."
And if the conversation continued as you described above, I would give the tape to... along with facts.
i agree with marnie; they can tape record us and NOT tell us as long as 1 of 2 parties know what is going on!!! good reply marnie!
i'd take tincup up on her offer as well!
Posted by jamescase20 (Member # 14124) on :
I learned something years ago. IF someone like anyone starts asking questions of a personal nature. I promptly hang up the phone.
They murder people who find cures for things.
Posted by Rianna (Member # 11038) on :
Honestly dont get involved with these guys.
Just forget them, continue getting treated by your LLMD and beleive that is the correct road to recovery.
You really dont have to do anything IDSA says, put them to the back of your mind and carry on as you were - otherwise they will impact on your life too much and that will really effect your health.
Just send him a copy of 'Under our Skin' to watch
Rianna
Posted by lymebytes (Member # 11830) on :
What a sick joke...what is the deal?
I had a call from our county health department about my LD and ehrlichia diagnosis. She was sympathetic and asked if I had left the county in the last 4 months! ha!ha! I said I haven't been out of the county in 5 years, except to go see my Lyme doctor after I had been infected.
Then I asked how many reports of ehrlichia they have had in the county this year? She said you are #2. I laughed out loud...our county has more than 1.5 MILLION people.. and I am the #2 with ehrlichia...I think I will go play the lottery now.
IDIOTS!
Posted by Rianna (Member # 11038) on :
[QUOTE]Originally posted by hcconn22: [QB] This is the strangest story/phone call I have ever heard of.
If you think that is strange look at this story and what they do to us here in the UK........
OK, all of this totally scares me. It's like a Lifetime movie starring Judith Light or Jaclyn Smith.
WTF? I live in FL. Granted, I was neve CDC positive but still...
This is like Freakville Story.
Nessa, please tell me you have some anti-anxieties! You poor thing.
Rianna: HOW CAN YOU LIVE THERE? (You know what I mean) My Word! What a story.
I don't know what I'd do if it were me...I think I'd want to prove them WRONG and get the test but what if it was rigged? WHO AM I? Nancy Drew.
K, gotta sign off this one for now because I'm officially wigged out. Posted by lou (Member # 81) on :
They changed the surveillance criteria for case reporting a while back. Here is the thread with the new criteria. Read the part about lab testing in it:
The change involved allowing a positive IgG WB as a substitute for positives on both the ELISA and WB.
So, the guy that called was going by this case definition. If you don't currently meet it, that would be a reason for another test, in order to officially count the case.
Other people have been called by state health depts so this is legit. And your answers were good ones. Don't tell them anything about your doctor or your treatments, though. They do not need that info to count cases.
It is very irritating that officials in various states are still saying they don't have the right ticks or the right mice, or some other darn excuse, when the evidence is easily found to show this is not true.
If you want to, do a search for the deer tick in FL and send them some info. But the person you talked to on the phone may not be very high up the ladder in the organization, might even be an intern, so send it to the head guys, along with a copy your state legislator, saying you are concerned that the health department is acting on inaccurate info about the presence of lyme disease ticks in your area, that you are concerned about the public health effects of this ignorance. Maybe phrase it more tactfully than this, as people who are called ignorant tend to tune out everything else that is said.
Please do contact tincup or someone knowledgeable in the state lyme support groups, for advice on whether to get another test. To count as a case, you have to comply with the surveillance criteria. Not counting as a case does not mean you don't have lyme, it just means you don't meet the strict case counting criteria.
Posted by adamm (Member # 11910) on :
DO NOT PLAY THEIR GAMES.
They have one goal, and that is to put all of us into the ground.
Posted by Nessa1815 (Member # 15697) on :
I would love to talk to Tincup. If she wants to talk to me. Like I said, I'm new at this so if anyone wants to help me with legit info...please help me!
Posted by tdtid (Member # 10276) on :
How do the Hipaa laws fit into all this? I just find it hard to believe that it can be LEGAL to be harrassed on the phone by someone wanting to know about our lyme.
Nessa, I have to say that you are much more patient than I would have been. I would have hung up on him after his first question for sure.
I'm sorry you had to go through this. This is total insanity.
Cathy
Posted by lou (Member # 81) on :
Listen, we are rightly paranoid about lyme and the govt response, but I don't think this particular situation warrants an all out red alert. They are just following up on a lab test result to see if it should be counted as a case. They did not establish the case definition, the CDC did. And it is the CDC that is counting the cases, reported by the states.
Here is a good article that you could use to educate the state health dept. on lyme ticks in FL. Ixodes scapularis is the scientific name for the deer tick, also called the blacklegged tick, and it carries lyme disease, among other infectious microbes. You will see that it definitely is in FL!
Seasonal distribution and abundance of ticks (Acari: ixodidae) in northwestern Florida.
Cilek JE, Olson MA.
John A. Mulrennan, Sr., Public Health Entomology Research and Education Center, Florida A&M University, 4000 Frankford Avenue, Panama City, FL 32405, USA.
A 2-yr study was conducted in a northwestern Florida state park and recreation area to determine tick species composition, seasonal abundance, and spatial distribution. Risk of tick attachment to park visitors was also assessed relative to tick abundance from several habitats.
Tick collections consisted of weekly cloth drag samples obtained from ground and emergent vegetation along a deer trail, a walking trail located in a 3-mo-old control burned area of forest, a nonburned walking trail, picnic area, and campsites.
Sampling was conducted from February 1994 through February 1996. Ticks collected during the study were as follows in descending order of abundance: Ixodes scapularis Say, Amblyomma americanum (L.), A. maculatum Koch, and Dermacentor variabilis (Say).
Significantly more adult ticks were recovered from vegetation compared with ground samples only for I. scapularis. Adult questing I. scapularis were collected from October through May (peak December).
A. americanum adults were collected from March through August (peak May). Adult A. maculatum were collected during August and September and adult D. variabilis were collected July and August.
Larval and nymphal stages of questing A. americanum were collected from June through November (peak July) and February through October (peak September), respectively. A. maculatum nymphs were collected from February through April, June, and September (peak March). No nymphs of I. scapularis were collected. Only four larvae of D. variabilis were collected during the study, all during February 1995. No I. scapularis or A. maculatum larvae were collected from vegetation or ground drags.
The greatest risk for tick attachment was in campsites where approximately 60% of all adult and nymphal host-seeking ticks were collected. The next greatest risk area was the walking trail located in the control burned area where an additional 28% of ticks were obtained.
PMID: 15535590 [PubMed - indexed for MEDLINE]
Related Articles
* Ixodid ticks on white-tailed deer and feral swine in Florida. [J Vector Ecol. 2001]
Posted by RoadRunner (Member # 380) on :
Take Tincup up on her offer she is very knowledgeable on this stuff.
RR
Posted by Tincup (Member # 5829) on :
Nessa... if you email me your number I will call you. I am available between noon and midnight... except on Sundays.
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You say you had TWO?!!!![[Big Grin]](biggrin.gif)
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from the cdc....![[Frown]](frown.gif)
My Word! What a story.![[loco]](graemlins/loco.gif)
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