As needed.. and usually when I need it NOW... I've been writing up a "fact sheet" about states to share with legislators, education oriented people, media outlets, etc..
I have some from years past, but they will need updating.... so basically we are starting from scrath in each state.
They will be used by many people in different settings so they are very important to have.
I am hoping to get them online at some point (someone else will have to do that- I'm not smart about those things).
Is anyone able to work on this project for their state or another state?
I will post a sample below.. but we are basically looking for a ONE page document that can be faxed easily or sent in the mail or emailed.
If you can gather facts and put them together.. I can set them in a standard sort of format.. and will also go through them for accuracy and to select the most "important" facts for the fact sheet.
So not to worry about the "look" of the paper.. just a couple pages of good facts will be needed.
Also- VERY important- I will need the link where you found the information.. and all should come from sites run by the CDC, NIH, Dept of Agriculture, FDA or other government site.
I can't use sister Susie's family story in the newspaper (example) as a fact or a reference, sorry.
If you'd like to work on one of the states, please say so below so others don't duplicate your efforts.
I'd like to have them yesterday... but a week or two should be good.
Thanks for considering this request.
Posted by Tincup (Member # 5829) on :
Here are some "samples" of facts for CT that we did for the most recent hearing. So CT is done.
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In 2007, CT ranked 3rd nationwide in the total number of cases reported to the Centers for Disease Control and Prevention (CDC), showing a rise in cases from 704 in 1990 to 3,058 cases in 2007. Fairfield county reported the most new cases, 470 in 2007, while Litchfield and Tolland reported 206 and 205 cases per 100,000 residents, respectively. (1)
The goal of the US Surgeon General's ten year program, Healthy People 2010, is aimed at reducing the annual incidence of Lyme disease to 9.7 new cases per 100,000 population in 10 reference states (2) where the disease is endemic, which includes Connecticut. However, the rates in CT currently average 90 cases per 100,000 people, approximately seven times higher than the national average and the targeted goal.
In 2002 the Connecticut Department of Public Health discontinued mandatory reporting of Lyme disease by laboratories. In turn, case numbers dropped from an all time high of 4,631 in 2002 to 1,403 in 2003. Failure to record known cases of Lyme disease in CT contributed to missing approximately14,000 cases of Lyme (per year) for the past 5 years, resulting in 70,000 uncounted cases. There were 27,699 total cases nationwide reported to the CDC in 2007.
The largest increase in cases was in the ``unknown'' county category, which climbed from 32 reported cases in 2006, to 578 cases in 2007. The majority of confirmed Lyme cases had onsets in June, July and August. The highest reported rates were in adults aged 50-69 years (242 cases) and amongst children aged 0-19 years (230 cases). (3)
According to the CT Department of Public Health, Lyme disease ranks 2nd out of 69 reportable diseases, trailing Chlamydia, which had the highest total number of reported cases for any disease in the state in 2007. For the first time in 2007, Lyme disease cases in CT surpassed the number of reported cases of Gonorrhea (4), making Lyme not only the most prevalent vector borne disease in the country, but one of the most formidable infectious diseases in the state of CT.
To understand the ramifications of the numbers, one needs to know that the CDC has indicated that only 10% of the cases that meet its surveillance criteria are actually reported, indicating about 30,580 cases of Lyme disease that met the CDC surveillance criteria occurred in CT in 2007, and 276,990 Americans who fit the surveillance criteria developed Lyme disease nationally. Since reporting began, over 3,430,260 people nationwide are believed to have been exposed to Lyme disease.
No one is tracking the number of cases that do not meet the surveillance criteria, cases that are physician-diagnosed clinically and the ones that most often develop into chronic disease. Estimates range from 10-15 to 40% of Lyme cases develop into chronic disease (cases that have failed a standard treatment course and continue to be symptomatic). Patients diagnosed with chronic Lyme disease often cannot buy life insurance policies, nor can they donate blood.
Other tick-borne disease are on the rise in CT and nationally. Babesiosis ranked 15th in the state amongst all reportable illnesses in 2007, with 156 total cases; up from 102 cases in 2006. The highest number of reported cases were from New London County (64). Congestive heart failure, renal failure, and acute respiratory distress syndrome are the most common complications reported in patients with babesiosis. (5) Many cases, however, are asymptomatic or not recognized by health care providers, resulting in a potentially serious threat to patients, as well as the nations blood supply.
After nearly a decade with no reported deaths due to transfusion-transmitted babesiosis, the US Food and Drug Administration (FDA) received 8 reports (CT included) from November 2005 onward. Most of the patients with babesiosis, they reported, developed altered mental status, kidney failure, or respiratory distress, with symptoms appearing anywhere from 2.5 to 7 weeks following a blood transfusion. Once symptoms developed, death followed within 5 to 17 days. FDA officials noted that babesia species, like Lyme, can survive blood banking procedures, including freezing (6).
From 1991 through 2000, 296 cases of babesiosis were reported to the Connecticut DPH. Of these, 67% were reported in residents of New London county. Cases were reported in residents of each county, except Tolland. The mean age of reported cases was 64 years; 61% were males. Infection was seasonal with 82% being reported in June, July, and August. In Connecticut, where both Lyme disease and babesiosis have been reported, the DPH recommends the possibility of concomitant babesial infection and indicates it should be considered when moderate to severe LD has been diagnosed.
In 2007, there were 31 confirmed cases of Ehrlichiosis (HGE), with Fairfield County reporting the highest number (11). In 2006 Litchfield county reported nearly half of all Ehrlichiosis cases. Cases of Ehrlichiosis dropped from 111 reported cases in 2000, to only 29 cases in 2003 when mandatory reporting by labs was discontinued.
In DNA analyses for the agent that causes human granulocytic ehrlichiosis, 50% of 118 adult I. scapularis ticks from Connecticut were infected. Although a reportable disease, the number of human cases of tularemia in Connecticut is unknown. (7) Considering many doctors do not look for these co-infections transmitted by the bite of the Ixodes scapularis (deer) tick that transmits Lyme disease, these numbers and lack there of, should trigger concern among CT officials.
And a HUGE THANK YOU to Melanie for putting that together for us!
PS...
When done please post your facts here for me and for others as needed. The final version will be shared later.
THANKS!
Posted by Tincup (Member # 5829) on :
Oh.. and if you have time... or lack facts.. and because it does make an impact...
You can count up and list how many types of ticks have been documented in your state... and how many different diseases they have found in animals or people or the ticks.
We will need links though to each of the places you find this information.
I'm sorry we can't just use Melanie's site as the reference (oh how easy that would be)... they must be government sites.
Posted by bettyg (Member # 6147) on :
tincup, you busy beaver you!
may i suggest 1 more thing as it reminded me of when we did all 50 states for all CONGRESS' names, emails/phone/fax nos., etc.
please show on here promptly WHICH STATE/S you plan on doing!
then tincup, could you put at the top of your post a ALPHABETIZED list of STATES BEING WORKED ON ??
otherwise, we spend so much time to read everyone's post vs. having an UNIVERSAL TOP PLACE SPOT to go to see which states ARE being worked on.
all you'll need to do is go back to 1st post, and click on PENCIL, 3rd box to right, and go to text to start your alphabetical list; perhaps even show which member is doing it too? what do you think tc?
betty
Posted by Tincup (Member # 5829) on :
BG- not sure what you mean? Sorry.
We need ALL states done.
I said this.. so not sure if this is what you are referring to?
"If you'd like to work on one of the states, please say so below so others don't duplicate your efforts."
So please help me by giving me more of an idea what you want.
I know how to edit.. just not sure what you want.
Posted by bettyg (Member # 6147) on :
example, i'm NOT volunteering for iowa as i feel IMANURSE would have more statistics available in her RN job background than me, but using ME AS EXAMPLE ONLY...these people are NON-COMMITTED FOR BELOW.***************************
IOWA, Betty G . later show DONE after posted here! Maryland, Tincup Missouri, Lymetoo
those people stating they WILL DO a state/s ... their names will be placed in your TOP post before your post stating what you actually need.
as you get more, they will go in there ALPHABETICALLY so we know those states are being worked on.
tc, does that make sense to you now? best way i can explain this my friend; later; nap then supper; back LATE tonight.
Posted by Tincup (Member # 5829) on :
I see.
Well, I won't be doing MD or other states (unless we get no volunteers) because I have to edit them all and put them in a format. But I assume that was an example.
As for going back and changing the posts each time someone posts something new... sorry.
I am not that "free" to spend the time required for doing that.. and it is frustrating... and I get easily confused too.
I'd look like this...
HA!
If folks don't want to scroll through to see if their state is taken... my bet is they won't feel like doing research either.
Sorry.
Posted by Need Lots of Help (Member # 18603) on :
BettyG/Tincup,
I wanted to help, so I will do what I can for Florida. Thankfully, you will be there to edit!!
If time permits, I will try to work on NC as well, as that is the state where I acquired this mess!!
Thanks, Shalome
Posted by Tincup (Member # 5829) on :
Excellent!
MUCH APPRECIATED!!!
Posted by Need Lots of Help (Member # 18603) on :
Bump
Not much volunteering going on......
Tincup, I guess they think you can conquer the world all by yourself!!
Posted by minoucat (Member # 5175) on :
I'll do WA if you don't have anyone else.
Posted by Tincup (Member # 5829) on :
mino...
Perfect! Thank you so much for working on this.
The states that get this done now will be the first on the list to get help from a national level... because the ones working on projects can't do what they need to without this first.
So this is VERY important.
Thanks again!
Posted by Tincup (Member # 5829) on :
Need said.. "Tincup, I guess they think you can conquer the world all by yourself!!"
Heck, I can't even keep the lizards from climbing on my computer when I'm working on it..
Or tie my own shoes most days!
If I am the one they are waiting on to conquer the world.. we are ALL in BIG trouble!
HA!
Posted by Robin123 (Member # 9197) on :
Can I ask a question? My impression is that state stats are way low in terms of actual numbers, probably everywhere.
Example: we watch a slideshow. It says 12 cases of babesia here. So someone in the room asks everyone to stand up who has babesia.
Twelve people stand up! He says, "Fancy that - all twelve showed up here today!" A real story.
So what is the reason you need gov't info gathered that doesn't reflect the real numbers of people infected? To demonstrate the lack of congruity between gov't stats and reality?
[ 02-14-2009, 01:31 PM: Message edited by: Robin123 ]
Posted by TX Lyme Mom (Member # 3162) on :
We've already been working on trying to collect this kind of data here in Texas, but it's virtually impossible to do so anymore now.
Back in the year 2000, our Texas Department of Health kept lots of data on their website, but most of that data is no longer available thanks to the prevailing political winds blowing from the CDC regarding Lyme disease surveillance.
We used to have one of the top epidemiologists in the country/world, Julie Rawlings, who was recognized internationally for her earlier publications on LD, but her work was derailed sometime between 2000 and 2002 when this work was defunded and she was reassigned to other duties at the TDH. She is no longer working for TDH now, in fact.
Here's the best link that I've been able to find thus far, but notice the old date of 1999.
Our next best hope has been to collect veterinary data on LD in dogs, but even that info isn't easy to find and is even more outdated (1989). This link is from the Texas A&M website, but I like it because it contains maps showing prevalence data for each county in Texas. (Scroll down for maps.)
Furthermore, our state veterinary school isn't seeing that much Lyme disease here in Brazos County anymore because fire ants moved into our county about 10 years ago, and when fire ants move in, the tick population vanishes. Thus, Lyme disease isn't really on their radar anymore either. Unfortunately, not all counties in Texas have fire ants yet though. It's just that the vets at the state diagnostic vet lab here at TAMU don't seem to have as much interest in LD nowadays as they did 10-20 years ago.
In other words, Sorry My Dearest TC. I wish we could supply the data you requested, but it's all been deleted from the TDH website several years ago.
We've been having to resort to using the data supplied by the LDA which they have compiled from CDC data (link below) -- which as we all know is very underreported, especially in states like Texas where physicians are no longer daring to diagnose LD because of fear of persecution, thanks to corrupt practices by our state medical board.
Thus, we are concentrating all of our advocay and activism efforts right now on legislative revision of our Texas Medical Practice Act in order to guarantee fair due process rights for physicians who have been targeted by our state medical board. It's hopelessly futile to focus attention on Lyme epidemiology during the current political climate here in Texas.
PS - I'm editing to add one more valuable link which really surprised me because it mentions Late Lyme Disease (pg. 2). It's found in a tri-fold brochure dated 2005 from our Texas State Department of Health, but I didn't find the link listed on our state's website so I'm suspicious that it might be an intentionally "hidden" link. Instead, I found it via a Google search.
[ 02-15-2009, 06:49 AM: Message edited by: TX Lyme Mom ]
Posted by Tincup (Member # 5829) on :
THANKS TX... good information. I very much appreciate the links and will use!
You are always so full of good info!
Robin 2389493759...
You asked why we use government info when it obviously is not even close to being accurate.
GOOD question.
The fact sheets MUST be able to be confirmed by official governement sites because they are being read and considered for action BY government officials and those who will check the "facts" through those sites before they decide to act or not on our issues.
That is one reason we flip out when they mess with the reporting numbers and don't count cases.
Those "numbers" are needed to be more accurate because funding, attention, research, etc all depend on them... if we like it or not.
Yeah, that sucks.
BUT.. we always fill in the blanks by quoting the "10 to one" ratio.... the one CDC cited years ago. That gives our officials in power the bigger picture and helps us out some what.
They stated for every case of Lyme reported- 10 are missed.
And if you go back far enough and look long enough.. you will see the IDSA ducks and others who are trying to bust our chops have burned their own butts by telling the truth about Lyme years ago.
That was when they wanted others to know how bad it was so they could get tons of dollars in research funding to study it more.
THEN.. once they published how BAD Lyme really was... and scared everyone with the truth... they would later use that fear factor to get MORE money to develop a new profitable vaccine.. the IDSA's cash cow.
Now if we said LLMD so and so said it was bad.. he isn't considered "credible" because he hasn't spent the millions in research funding to prove it. He couldn't because the DUCKS sucked it all up.
AND.. the ducks control a good portion of the medical journals... because with NO PATIENTS they still need to make an income... and fill up their SPARE time.
So you have a vicious circle.
The "art" in fighting this Lyme war is to use your enemies sword (words) against them. If you do that.. what "come back" will they have to try to prove you wrong? They can't. It is their own words!
So one way or the other.. or at one time or the other.. they obviously lied about the problem if on one hand they say it is bad stuff.. and on the other they say it isn't!
Hope that helps explain it some.
BTW- We always explain the truth about what is going on to the folks we need to help us.
They are finally getting the picture. At least the smart, honest ones are. It just takes a lot of time to break down the notion that the NIH, CDC and IDSA don't have other motives.. nor do they make good decisions all the time just because they are the "government".
Posted by minoucat (Member # 5175) on :
TC, the info on WA state is beyond pathetic. I know that cases are not being recorded -- even CDC positive ones -- because people with CDC positive LD have been informed by the DOH that they are not registered.
For instance, WA DOH reports 15 cases of LD a year, 8 cases of relapsing fever, and only 2 cases of babesia "ever". (I have to admit -- almost everyone in our local group got infected elsewhere, but that doesn't change the fact that they're now WA residents with LD...)Wa DOH
The Washington State Department of Health, the University of Washington Division of Infectious Diseases and the University of Washington School of Public Health and Community Medicine concur with this.
The ALDF has a map that shows WA to be "low risk" for LD (quel surprise)
Veterinary sources are not helpful either -- IDEXX Reference Laboratories' results collected from the year 2001 to March 2007 and shows only 11 cases of erlichia and 16 of LD in WA.IDEXX Map
There have not, to my knowledge, been any tick sweeps in WA that are in any way useful to gathering LD info.
There just isn't any more info out there about WA from official sources that I know of.
Geez, things haven't improved in any way in 10 years. Happy Valentine's to you, too.
Posted by Robin123 (Member # 9197) on :
Stand aside, imperials...I am on plebian business...
lol
At least we've been a bit tick-dragged in California. 10% infected in Marin, 17% infected in Santa Cruz area, up to 41% infected in Mendocino (Redwood Valley), with a Mendocino county average of 12%, I think.
That's one thing that would be nice to do is at least have area tick-infected percentages. I know some places are very high. Too high.
Thx for explaining, TC - I hope some day stats and reality will start to converge.
And hi to you, TX mom!
Posted by TX Lyme Mom (Member # 3162) on :
Whoops! Silly me. I missed finding our Texas statistics the first time. Here's the link - scroll down to find "Lyme" listed alphabetically in the chart.
I'm adding the link here as a new message so that you won't miss seeing it. I'll edit my previous post (above) to include this valuable link also so that all the info is collected together in the same spot, and I'll post it for our TxLDA group next after this since they have been begging for the same info, too.
Posted by TX Lyme Mom (Member # 3162) on :
Here's more good stats from a CDC webpage, in case you haven't already found it. (Scroll down for nice maps.)
If we keep searching, we might get lucky and find even more recent data than this, which only goes through 2006.
Posted by Tincup (Member # 5829) on :
Mino.. yes, it is hard and disheartening to see what they "don't" say too.
Sometimes vets have compiled research... so that may be a source to draw from. Animal vets I mean.
Also, the military may have reports in your area if there are any bases in or near WA.
You may also notice that the DPH and others say REALLY stupid things... which can also be used in reports.. and worked on to show how bad it is educational wise.
Thanks for looking!
Robin 3827493...
You said..
"Stand aside, imperials...I am on plebian business..."
Well, I've been TRYING to downplay the reports (in my mind) that say folks from San Francisco are a bit weird.
You're NOT helping!
But you do make me laugh you goofy girl you!
Now.. do you think you can find more?
AND.. I do need links to the sources if you will. Can't use it without the references, sorry.
Maybe the CALDA site would point you in the right direction?
Or Captain Kurk?
HA!
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Hey TX-
Again.. you are full of it!
GREAT information that is!
Keep it coming! LOVE it!
And truth is... I am not reading it all right now. Will go through it as I make up each state's report... so forgive me for not commenting more specifically.
I'd forget it all by the time I started writing on your state... so prefer not to use my little brain power two times if I can help it!
Knowing it is here and ready is very comforting!
Thanks!
Posted by Need Lots of Help (Member # 18603) on :
Tincup,
I asked PDavis to help us with NC. She will see what info she can dig up.
Thanks, Shalome
Posted by lymewreck36 (Member # 4395) on :
Hi Tincup. I live in switzerland but am a resident of Alabama. Not sure if I can help you from over there, but there is a small possibility I can get m y Dad in Alabama to help me a little.
Please tell me in succinct, simple language what is needed. I'm not feeling very well of late. (like that is different from anyone else!)
mary in Switzerland
Posted by Robin123 (Member # 9197) on :
Hi TC - will do this in spurts, as am still collecting info.
If you look at Melanie's LymeMemorial site, state stats are listed from 1980 to July 2008. 3,285 Lyme cases reported for CA.
Then there is Reported Lyme Disease Cases by County of Residence 1998-2007, but that doesn't seem like useful info, since it doesn't say where people got bitten.
We have discussed this point at the yearly Sacramento LDAC meetings (the Lyme Disease Advisory Committee which advises the state.
A 1999 bill established this committee of slightly less than a dozen members from around the state that many of us attend each year).
Also, tick dragging results are reported for county locations.
.................................................
I am still trying to get info for whether the infection stats I mentioned above are reported on gov't sites.
If you go to the CALDA site (www.lymedisease.org), and click on CDPH, and Numbers, then you get some state numbers. Like the previous year shows up. 76 CA new Lyme cases reported from CDPH to the CDC in 2007.
Direct lab reporting is now law in the state. The problem is that the state then confirms the reports to see if they meet CDC surveillance case definition.
If the report comes from a lab that hasn't done an ELISA, the case is not reported, even tho an ELISA test generally isn't worth the paper it's printed on.
Example: in 2005, one lab reported 401 cases, yet CDPH reported only 95 to the CDC.
In 2007, one lab reported 1137 cases, yet the CDPH reported only 107 cases to the CDC. That's 1030 positive cases not sent on to federal; ie, more than 90% not reported.
This lab is IGeneX, one of the top Lyme-testing labs in the country/world.
That's why IGeneX says to also order an IFA test along with the IgM and IgG Western blot tests, as the IFA test is also an acceptable screening test,
and if positive, will allow positive Western blot test results to be reported to the CDC.
I think that's a very important point to stress, to do the IFA screening test also. It's a cheaper test, too.
Blood is kept for up to three months. Testing for IFA also within 6-8 months after a positive WB test is acceptable. After that, WBs along with the IFA would have to be done.
Note: what states accept varies by state. Some say there's no Lyme here and will not accept even positive IFA/Western blot results. Seems to me we need some state organizing around that issue.
California will accept positive IFA screening test(and a positive ELISA, which is rarer) plus positive Western blots, but not a positive PCR test (DNA testing). Go figure.
NY state, on the other hand, considers a positive PCR to be a highest-standard test.
It would be an interesting research project to find out what positive test results each state accepts/doesn't accept.
.................................................
Continuing on at www.cdph.ca.gov, under Health Information, it lists Diseases and Conditions, A-Z.
I noticed that Info for Health Professionals lists one Lyme disease report from 2000 and one from 2002 - ie, a bit dated.
If other Californians can add stuff here, please do...
[ 02-25-2009, 12:05 AM: Message edited by: Robin123 ]
Posted by Tincup (Member # 5829) on :
Will get back to you... on my way out...
Posted by lakes592 (Member # 18905) on :
Hi, I will do my best to work on NH. Not sure if I could just use the CT format posted above but just insert NH info?
I'm hoping to be able to work on it over the next two weeks.
I was thinking about when someone above mentioned Vet's keeping info, that sometimes I feel like the dog's get treated better than we do...But I'm not bitter...LOL
Ann
Posted by pmerv (Member # 1504) on :
I asked on the state groups but not sure what kind of response you had.
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