Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Hi,
I was telling someone my story and they were shocked that it took me seeing several medical professionals to give me the correct diagnosis of Lyme.
This got me curious. I'd like to post a poll, but I don't have the authority.
I see it going something like this:
How many medical professionals did you talk to before getting diagnosed with Lyme/tick-borne disease?
1-5 6-10 11-20 21-30 Over 30 I'm still waiting for a doc to diagnose me
Is this doable? Can someone help?
Maybe a second part with: how long did it take you to get diagnosed?
Within a month 2-6 months 6 months to a year 1-2 years 2-5 years 5-10 years 10-20 years 20-30 years over 30s I'm still waiting for a doc to diagnose me.
Posts: 2839 | From California | Registered: Jul 2012
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I don't know how to post a poll, but I can give you my answer... Over 30 doctors, more than 30 years. Ridiculous.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Yikes!!!! That's insane!
I really want to see what others have to say.
Posts: 2839 | From California | Registered: Jul 2012
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posted
A little while ago, www.lymedisease.org did a very large patient survey, asking how many doctors everyone saw. You might want to check with them about it, since they use it to present patient facts now.
Posts: 13116 | From San Francisco | Registered: May 2006
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Thanks Robin. I looked, but I couldn't find the poll
I'm very interested in hearing about the people here on Lymenet though.
I think it would be great to do a poll, but also have a comments section under it if possible.
Posts: 2839 | From California | Registered: Jul 2012
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posted
I remember answering questions in that survey, I think including how many doctors I saw, but it looks like the survey focuses on quality of living issues. It's summarized in one of the Policy Wonk blogs at www.lymedisease.org.
Am pming you -
Posts: 13116 | From San Francisco | Registered: May 2006
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I guess where I'm confused is there's a "post a poll" button at the top of this page.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Looks like you just click on General Support and then Post A Poll, at the top of the page.
Posts: 13116 | From San Francisco | Registered: May 2006
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
32 doctors, 16 specialist docs (neuro, gastros etc), and 14 medical practioners (chiro naturo acu etc)
Average 13,000 on medical practioners each year.
Province pays for emerg room visits doctor and specialist appts.
The money and time wasted by denying lyme is atrocious.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Wow, it looks like I need add some larger numbers! This is ridiculous.
Robin-
It says:
"Sorry, you do not have permission to create a poll."
When I click the button.
Posts: 2839 | From California | Registered: Jul 2012
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Maybe 2-3 Dr.s over the course of 20 some years did I really confide in, ask maybe it's physical- first 2 I would mention strong fatigue, ask them to check thyroid, they'd not want to cuz I'm thin, thyroid always checked out. I rarely, rarely went to Dr.s for anything, ever.
8 years ago, about 3 months after delivering my last child (and not BF'ing) I went to a female Dr. and said: I can't sleep, I have overwhelming anxiety, I'm having a very hard time...
got prescribed sleep pill and antidepressants.
I always thought it was 'me' or 'my circumstances'. It never occurred to me it was a physical medical issue. Secretly thought I might be doomed for early Alzheimer's as my memory began to slip more and more-
I wonder how many people walk around like I did, infected for decades, slow worsening progression, perhaps a stressful event pushing them finally further down, but still blame themselves being too weak, not good enough, not handling life as well, and never seek help.
And some turn to drugs or alcohol, maybe pills. As a way to deal with feeling so bad all the time.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Poll - how many of us like to dance while posting something at the post office? There, that covers the last two entries...
Posts: 13116 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Poll [sic] dancing at the post office? Now that would be something (not) to see, eh? Fun, fun, fun. -
[ 09-04-2014, 11:31 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- More detail at each link. Although, I wish they had shown the actual survey and the responding numbers. That may be in the full report but I don't see how to access that. It would sure be worth it. And Weintraub may have referred to in in the link posted above at the IOM presentation.
LYMEPOLICYWONK: Lyme Healthcare Access and Burden of Illness Survey Results Published!
In 2009 prior to the IDSA hearing, CALDA wanted patient voices to be heard and conducted a survey that drew over 4,000 responses. It ended up being the largest survey of Lyme patients ever conducted in the United States.
. . . Specifically, patients with Lyme disease had difficulty obtaining diagnosis and treatment for their illness, traveled great distances to receive healthcare, were turned down for health insurance based on their illness, and had difficulty receiving care at local hospitals. . . .
. . . This survey focused on 2,424 respondents whose clinical diagnosis was supported by positive test results.
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Thanks Keebler. Too bad they didn't post the actual stats.
I'm really interested in doing an informal poll here on Lymenet. That way people can comment about their own experiences.
These are the two questions that I'm curious about and would like to hear people's stories too.
How many medical professionals did you talk to before getting diagnosed with Lyme/tick-borne disease?
How long did it take you to get diagnosed?
Since no one seems to know how to actually post a poll with multiple choice answers, I may just need to start another thread.
Posts: 2839 | From California | Registered: Jul 2012
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posted
And how about adding how did you find out? ie via oneself or others or read something or watched a film, etc.
Posts: 13116 | From San Francisco | Registered: May 2006
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