posted
I know somewhere out there in Internet land is what I'm looking for.
Many, many polls have been taken regarding lyme patients and treatment protocols. I'm running in circles trying to find what I want to compile.
I'm only looking for First diagnosis and treatment.
I need the following:
# of Lyme patients diagnosed early (no more than one month after confirmed bite)
# of Lyme patients diagnosed late (more than a month after confirmed bite)
# of Patients diagnosed without confirmed bite
# of Patients diagnosed with cronic/late stage Lyme.
Early diagnosis treatment was....?
Late diagnosis treatment was.....?
# of patients diagnosed and treated by llmd
# of patients diagnosed and treated by other specialties (specify what specialty)
I have tried to find poll results and am having no luck really.
Cheryl/Proudmom
-------------------- "Absence of evidence is not evidence of absence"--Carl Sagan Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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bettyg
Unregistered
posted
cheryl, i've not seen anything like this, but i'll copy your link above and send to tincup's home email.
she has a WEALTH of info stashed away for all occasions!
1. also, did you look on LYME DISEASE ASSN. SITE; click on link on left side; read left side there.
Yes I did go to the LDA site as well as the Ilads site. It could be just my lyme brain that I'm not finding anything.
I seem to be having brain "blips", I'm on track with what I'm trying to do and then in the middle of typing or reading I totally forget where I am or what I was doing.
I've been doing what I can while I can and I so appreciate your steady support whenever I get on here to beg for help.
I'll go to Mels site before my brain takes another nap. Hugs to you betty, Cheryl
-------------------- "Absence of evidence is not evidence of absence"--Carl Sagan Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Not to discourage you... but I don't know if or where you will find info such as that.
I'll try to give some stuff.. but don't know if it is what you want.
# of Lyme patients diagnosed early (no more than one month after confirmed bite)
Check the Lyme clinics studies run by ducks. They see "tick bites" there and have done some studies using that as a starting point.
There are no national figures broken down the way you are asking this... sorry.
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# of Lyme patients diagnosed late (more than a month after confirmed bite)
No national or any good references that I know of... sorry.
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# of Patients diagnosed without confirmed bite
The CDC went back though reported cases at some point (study/paper is online). They noted that less than 50 percent of people "remembered" a tick bite from the REPORTED cases only.
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# of Patients diagnosed with cronic/late stage Lyme.
Figures from various studies range from 10-15% to 40% of patients continue to have symptoms after being treated with the IDSA protocols.
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Early diagnosis treatment was....?
The duck studies will point out varying protocols. Mostly 2-3 weeks of doxy... or if you get a really STUPID duck.. the one pill theory could be applied. No studies on the total number of people this insane protocol has been used on.
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Late diagnosis treatment was.....?
No such beast I'm afraid.
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# of patients diagnosed and treated by llmd
No such figures, sorry.
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# of patients diagnosed and treated by other specialties (specify what specialty)
No. Sorry.
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If you tell me what you are trying to show or prove.. maybe I can come up with something to help?
I will certainly try.
I can't PROMISE there are no such figures out there.. but from what I've seen and can remember... I haven't run across a break down like you are asking for.
Thank you for verifying that I'm NOT crazy, lol. My half baked idea is to come up with a statistical type of paper. In counter to the bogus form letter the IDSA is spreading around.
I'm sick to death of hearing them spout off about the "small" groups of doctors and patients that believe in more aggresive treatments than their precious guidelines promote.
I've taken part in polls and have seen them but darn it all, I didn't write down where they were from.
I know that Dr.B and the Turn the Corner Foundation has started a registry for doctors to input their info. on patients (not names, just dx.) and treatments used.
Its still too new to have much of anything yet. I probably should get ahold of Colleen too and see if she has anything.
An example of what I want to do is show say, Out of 500 lyme patients,___percent were treated following Idsa guidelines. ___percent were treated following ILADS guidelines. ect. ect.
If I conduct a poll myself it could be argued as bias so I really wish I could find a reputable source.
TC, I know how much you already have going on and bless you for all your hard work. I was just hoping that someone could point me in the right direction and I'd take it from there.
I honestly don't want to sidetrack you from your own projects you're working on right now.
Like I said when I first started posting here, I want to be like you and betty when I grow up
Thank you so much,
-------------------- "Absence of evidence is not evidence of absence"--Carl Sagan Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"Like I said when I first started posting here, I want to be like you and betty when I grow up."
Funny girl!
You said..
"In counter to the bogus form letter the IDSA is spreading around."
I think what you are doing is admirable. Very much so!
Since the polls don't reflect those specific answers....
Maybe try another angle.
Hold on a minute.. let me find some stuff I've been working on...
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Ah HA!
I have 20 pages of "discarded" facts and figures I wrote up from this last project... so if this can help in any way... go for it.
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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).
According to the CDC's 10 fold reporting there are close to 3 1/2 million people in the United States already diagnosed with Lyme disease, or 344,000 to 1.4 million that have been treated who are still suffering with unresolved symptoms and have no acceptable treatment protocols available to them.
`````````````````````````````````````````````````` A 1999 CDC study had costs ranging from $161 for an early case (2-3 wks.), to $61,243 for a neurologic (11 yrs.) one. Adequate treatment in the early stages of illness are essential in stopping the development of long-term more costly sequelae.
Guidelines written by only one sub-specialty of health care professionals, ID doctors- no front line physicians with experience treating patients.
According to the Department of Labor, Bureau of Labor and Statistics (2007) there are (see list on separate page) 640,020 total estimated front line health care providers.
IDSA with their 8,000 members represents only 1/100th (example number) of total number of doctors in country- approx 160 IDSA ducks per state- compared to approximately 12,800 other front line health care providers per state who are more likely to see early Lyme and yet can't treat because they have their hands tied by the guidelines.
posted
Awesome TC, what you have is a great start for me. LOL your brain takes walks too?? that's what mine does but i've been calling it "blips".
Thank you for letting me pick your brain, hopefully I left you some to work with.
Well I'm off to crawling the web and see what I can dig up. You have a peaceful night friend.
Hugs, Cheryl
-------------------- "Absence of evidence is not evidence of absence"--Carl Sagan Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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bettyg
Unregistered
posted
cheryl, what a flattering remark that you want to grow up like me and tinup! i remember when you 1st wrote that to me many moons ago. thanks for the ego booster; "that we've done something good"! lol
tincup, thanks for coming here and answering what you could for cheryl's research project.
tc, i enjoyed reading your tidbits above especially this one...
IDSA with their 8,000 members represents only 1/100th (example number) of total number of doctors in country- approx 160 IDSA ducks per state- compared to approximately 12,800 other front line health care providers per state who are more likely to see early Lyme and yet can't treat because they have their hands tied by the guidelines.....
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bettyg
Unregistered
posted
cheryl, one more afterthought...
this board is set up for POLLS, but someone monopolized it taking up the entire PAGE; so it was disabled.
but i bet if you could get your questions together, email lou bachman, moderator, by clicking on his name at the top of any forum; he MIGHT be willing to open it up for 1 CONTROLLED POLL ??
it never hurts to ask, but just get organized so you present him with all the facts at once.
he spends equal time on 4 charities...1 busy man.
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I was considering doing a poll myself but I'm worried that it will be shot down by nit pickers once it's published.
I'm working on trying to figure out how to do this. My thoughts are that it would have to be an angecy of some sort not related to lyme groups on either side of the issue.
The fact is that we could make numbers look good for our cause and so can the IDSA. That will get us no where. Hmmm.....wait! thought coming, aw, How about a university?
Ok so now to make some calls. I will type up something for Lou too and see what he thinks about doing one here. I suppose its a good idea anyways to type it up as a proposal for reference.
Thanks to the both of you for your time here,
-------------------- "Absence of evidence is not evidence of absence"--Carl Sagan Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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bettyg
Unregistered
posted
cheryl, i was emailing lou for another reason, and mentioned you were working on something and possibility of a poll here ... copied your post above i think. anyways, he has a heads-up on it.
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bettyg
Unregistered
posted
cheryl, lou emailed me back about another subject, and he/wife, angela, are swamped on equal time for 4 charities!
big autism walk coming up and lou has 2 other things scheduled right now too. just fyi ... so his time is very LIMITED right now.
he's also calling folks for big $$$ for these charities..
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posted
Thank you betty for the heads up about Lou. I fully understand a full plate right now. It's that time of year for many organizations.
I'm working on the format for the questionaire/poll and with my stupid brain "blips" it's taking me awhile to get it put together.
Sure wish I had my old brain back, this stuff used to be very easy for me. I'm not giving up on it though.
Being as that I have no money, this is the only way I can contribute to everyones efforts. I'm not in a huge rush so in time this will get done.
Thank you again Friend
-------------------- "Absence of evidence is not evidence of absence"--Carl Sagan Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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bettyg
Unregistered
posted
cheryl, we have STATISTICAL members; i don't remember who but several offered their services if we needed! might be something to look into even if you have all the time in the world lol.....
just click on DIRECTORY at top go to 2nd blank line left side ... type in statistics or something like that go to next line using arrow, chose OCCUPATION click search ... it will show you who pops up.
bottom ones are most current, active members
you can pm them from there and include your link above so they have all info. happy hunting!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
May I suggest...
They will nit pic anything you try to do apart.
For now.. stick to what you can prove. Especially look for what THEY wrote. It is out there.
If you use what THEY wrote.. they can't dispute it.
You KNOW I love our LLMD's.. but when working on something that needs facts and figures... I won't use their work. It won't be accepted...
And....
It is more fun using their own stuff to make my point.
Check on stuff published before the vaccine came out. Late 1980's and early 1990's. Even most of the 1980's stuff has information you can use.
That was back in the days when they told the truth (somewhat) about Lyme because they were leading up to selling their vaccine... and wanted to scare people into getting it.... cha ching! $$$
another suggestion is to buy or see if you can get inner library loan of this NEW HOT BOOK off the press in the last 2-4 weeks!
THE BAKER'S DOZEN... funatic fringe all about the IDSA and written by PJ LANGHOFF, last of her series of 3 books .... it's all in your head series.
pj has over 1000 links REFUTING IDSA comments they have made currently with past comments and past studies done!
it's 525 pages filled to the brim per page in SMALL print to get more on each page. had she done a LARGE print for me; it would have been over 1100 pages and HEAVY; this one is heavy as is!
can be purchased by AMAZON; click on link on left side. well worth the money.
i think she is caught up now on all who pre-ordered like me, so she could get it off to you SOON.
see the other posts i've shown here in activism where you can contact her using her email for allegory press, which she owns. good luck.
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I too love to use their own studies against them but I've seen that lots of people have done that many times over. I'm going to go back and look at their studies and see how i would put it together differently.
I guess some of my frustration is that at the moment there are No stats. for what i'm looking for, and trying to find a neutral source is nearly impossible.
Betty, I sure wish I wasn't broke, actually beyond broke. Not sure it would help to buy the book anyways. I can't focus on reading books anymore.
The internet is much easier on my lyme ridden brain. It's really one of the hardest adjustments I've had to make in my life. I LOVE to read and at one time I used to have a book with me where ever I went.
Anyways, today is a bad flare day and i'm just going to rest.
Thank you both again, Cheryl
-------------------- "Absence of evidence is not evidence of absence"--Carl Sagan Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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bettyg
Unregistered
posted
cheryl, i understand! here's to a good rest with relaxation and waking up feeling relaxed and ready to tackle the world again.
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