LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
CALDA survey results are in: (California Lyme Disease Assoc.) **90% had difficulty or extremely difficulty obtaining treatment from a knowledgeable physician to treat Lyme disease. 51% had traveled more than 100 miles to obtain treatment and 53% had...... been forced to travel out of state to obtain care. http://www.lymedisease.org/news/lymepolicywonk/198.html
posted
copying it here except for attachment .... and breaking up for neuro lyme folks like me
thx lisa for posting this hugs
POLICY WONK: CALDA survey results are in!
How we YOU diagnosed? Ask the Lyme community a question, or two or 30 and they answer! When we asked for input before the IDSA Lyme hearing, we had 3,600 completed surveys within 2 months--that's astounding! I want to thank everyone who participated.
The survey results provide very important information for the Lyme community and will be useful to describe the extent of the problem that patients have being timely diagnosed, treated, reimbursed, seriously ill and the devastating effect the guidelines have on patients health.
Those of you who listened to my speech before the IDSA review panel know that I used the survey data to reinforce key points.
(You can listen to the hearing, which is archived.) T
his survey should be a powerful tool with public policy makers trying to understand the devastating impact these guidelines have on patient care and the need for curb the effects of these guidelines through legislative and other means.
The full results of the survey can be downloaded by clicking on the attachment at the end of this blog post. Some key points:
**Only 16% of those responding were diagnosed within 4 months of becoming infected with Lyme. The remainder were diagnosed far later when Lyme disease is much more difficult to treat. It took more than 6 years for 35% to be properly diagnosed.
**Only 13% were diagnosed using the IDSA-recommended two-tiered Lyme testing approach.
20% were diagnosed by western blot using CDC criteria, and
42% were diagnosed clinically with supporting lab tests that did not use CDC surveillance criteria.
**90% had difficulty or extremely difficulty obtaining treatment from a knowledgeable physician to treat Lyme disease.
51% had traveled more than 100 miles to obtain treatment and
53% had been forced to travel out of state to obtain care.
**54% had been treated and failed treatment under IDSA protocols.
A resounding 81% stated that they would not consider being treated under IDSA protocols.
**More than 60% of respondents who failed to improve under IDSA protocols improved with additional treatment.
**41% of patients were not able to afford the medical care they needed.
**88% had to cut back on work, school and household activities.
50% either had to quit work or school due to illness and
another 11% went from full time to part time work or school.
I will be taking a closer look at these survey results in my blog over the next couple of months.
My comment for now - re the question mentioned above about what role rheumatologists play, I have found that rheumatologists will not diagnose Lyme and will do anything to get out of doing so, from ordering the weak ELISA test (which came back negative after I had a positive IGeneX test - "good news, you're negative"), to dismissing the IGeneX test results, to declaring fibromyalgia, to not listening to anything we say about what our history and symptoms are.
Before I found out I had Lyme, I didn't know any better. Yes, they were the first medical specialty to label what I had as fibrocitis, with this term changed shortly after to fibromyalgia.
Since knowing what's going on, I have answered back in their offices and told the truth about what I've gone through.
I've then gone out and talked to their staff as well about this spreading problem which is local and can hit anyone.
We can do that in doctors' offices. We do not have to remain silent when we hear them telling us the opposite of what we know to be true for us. We have a voice and can use it.
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