LYMEPOLICYWONK: LDo Lyme Impact and Cost Survey
I want to extend my thanks to the nearly 4,000 people who have already responded to the new LDo survey and urge those who have not responded yet to do so. The survey will close May 5th. To take the survey, go to LymeDisease.org and click the “Take Patient Survey” button.
Finally, I want to encourage those taking the survey to take the time to complete it fully. Some of the questions used come from government surveys that are used to determine the impact of different illnesses on the patients affected. These comparisons are very useful to understand how Lyme disease is similar or different from other diseases. This survey addresses many issues which are unknown in the Lyme community. For example, how many patients with chronic Lyme disease have co-infections? How many have adverse reactions to antibiotics? How many patients are currently on oral antibiotics? How many on IV antibiotics? Answers to questions like these are central to understanding what we need to do to improve the quality of life for Lyme patients throughout the nation.
To take the survey, click here.
(Note: the system only allows one survey per computer. If you have multiple family members with Lyme, they will need access to additional computers to take the survey.)
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org, formerly CALDA. Contact her at email@example.com.
- April 27, 2013 at 12:53 pm
My 30 year old daughter has had Lyme disease for over 10 years, as well as Bartonella, Babesia, mold infections, diagnosed both clinically and supported by lab results. She is on disability, unable to work or go to school due to signif physical and cognitive issues – seizures, inability to concentrate, follow instructions, or remember; severe joint pain; signif nausea and vomiting; severe fatigue; recurrent signif anemia requiring blood transfusions; anxiety and panic attacks; coagulation dysfunction requiring heparin Rx; sleep difficulties with recurring nightmares; weight gain of 100 pounds over last 2 years; significant hormonal problems (thyroid, adrenal, gonadal, pituitary); menstrual irregularities and dysmenorrhea, etc. The health care system can not turn their head away and pretend this does not exist or meet some random criteria. There is no other chronic health condition that is treated in such an abusive, malpractice and neglectful way. It’s time for all to work together and stop denying medical care to patients with LD and coinfection-related complications, whether or not there is active infection occurring currently.
- April 28, 2013 at 9:01 am
It’s time for Lyme to be recognized, It’s time for doctors to take this disease seriously, It’s time for patients to be treated with compassion and understanding, not ignorance! The rights of patients and our treating physicians (drs. who know how to treat it)are being trampled upon by IDSA and insurance companies who are refusing to treat victims of Lyme and its co-infections. This epidemic is being repeatedly spread throughout the United States pointing fingers at patients who have Lyme disease, saying “it’s all in their heads!”, Wrong, wrong, wrong, luckily today there are millions of people who have the disease, who have died from this disease and others who have it and doctors who aren’t detecting it.
- April 28, 2013 at 12:41 pm
I was told by 6 doctors that I didn’t have Lyme, even though I go a bull’s eye rash and many symptoms. This went on for six months until a simple case is now very painful and difficult to manage. How much less it would have cost in health care and work hours to have given me the proper antibiotics in the first place. We have spent many, many thousands on one case in less than a year. These must be a better way than this!
- April 28, 2013 at 7:19 pm
Since it seems that so many people seem to be suffering from Lyme and co-infections and have negative tests….I don’t understand why the medical community at large isn’t alarmed as to what’s going on..! I know that labs only test for typically one strain when many more exist. But, how can physicians keep ignoring they same myriad of symptoms and let people suffer like this??? If they don’t “believe” people can have Lyme with a negative test then what in Gods name is going on? Obviously something is…you don’t don’t need a degree to see that friends and family of all ages are getting these symptoms and not have a reason for it. Step up to the plate Medical Community…Lives are being ruined…!
- April 30, 2013 at 8:45 am
My story is not unlike thousands of others yet I, like them, have lost everything after being misdiagnosed, untreated and even shunned by the very people we entrust with our lives…our doctors. Despite my knowledge of and insistence that I had TBD’s, I was ignored, ridiculed and even accused. If they had simply listened, kept an open mind, and treated me with a simple course of antibiotics I would have my life. I found the tick on me while visiting my hometown near Lyme, CT; I knew more about Lyme than the doctors whose treatment I sought when I returned to California. They insisted California didn’t have Lyme Disease, disregarding my claims of a known tick bite during my recent trip back east. Why is it so difficult for physicians to listen to their patients, with empathy, understanding and perhaps even a little trust that they may actually know something, especially when it comes to their own bodies? I was shaking with tremors, forgetting simple things like my own phone number or my pets names, getting lost in my own neighborhood; my knee was swollen to double its normal size and I had gained nearly sixty pounds in 10 weeks. They told me I wasn’t getting enough excercise and it was normal to become forgetful in your forties. They refused to listen despite my cries for help. Six years later I am homeless, penniless, nearly bedridden and can no longer provide for my son. I have lost both my SS and private disability cases, told by my lawyer that I “picked the wrong disease”. Don’t we suffer enough physically? Yet we are punished in so many other ways as that is not enough. Something needs to be done and I applaud all those who fight for us!
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