I have endured a life with Lyme Disease for over 30 years, of which I have spent the last three as a completely disabled person. I am determined to campaign for those who also suffer with Lyme Disease, especially those who have battled with its symptoms for many years. My special passion is for those who cannot afford the treatment which is readily available for people with enough money to pay for it from private doctors.
Insurance companies will not fund the long term treatment necessary for chronic Lyme Disease because they are allowed to discriminate against illnesses that are expensive to treat. If you are bitten by a tick, as evidenced by a "bulls eye rash" on your skin, and receive a lab diagnosis resulting from a special blood test, and receive treatment quickly; you will likely recover quickly. However, if you arrive at a chronic Lyme Disease diagnosis much later, you will find yourself battling co-infections and complications that make treatment much more complex and prohibitively expensive. Many Lyme patients go broke paying for their treatment out of pocket.
Todays doctors have become too afraid to even diagnose chronic Lyme Disease. First, they know that the insurance companies will not pay for more than one or two months of treatment, and second; they dread becoming an easy target for medical boards (heavily influenced by insurance companies) threatening to review their treatment of Lyme Diseases patients knowing that their licenses can be taken if they use alternative diagnostic or treatment methods. In most cases a clinical diagnosis must be made by a doctor of a patient with chronic Lymne because adquate scientific testing does not exist. Also, the controversy over long-term treatments with antibiotics and their associated high costs for such treatments hurt the bottom lines of insurance companies. Ouch! Maybe we should empathize with their needs? I wonder if their bottoms hurt as much ours? It's a cruel world out there...hmmm, but there are some who still care. I CARE!
My husband has an MA in Public Administation and he recently changed careers to dedicated his time to lobbying our state government to make improvements that will protect the civil rights of chronic Lyme Disease sufferers here in Oregon. Many that are personally affected by this illness, do not have family, church, or government advocacy to correct the injustices they suffer from. Yet, change will come both in this state and other states if we fight on a united front for our rights by participating in our democracy.
As in any democracy, policies will not change unless we as voters participate! Unfortunately, we often just get too busy to do something "right now!"
As busy as most Lyme survivors are today, "now" is rarely convenient! Yet, NOW may be our only chance to influence leaders today so that we as patients can have quicker access, less expensive access and access without discrimination to appropriate medical care proven to work for a majority chronic Lyme Disease patients.
Please take a moment (right NOW) to list the effects that Lyme has had on you. This study will assist us in presenting accurate and quantified information to medical and political leaders as we campaign to change the system back to something that will STOP discriminating against us and START helping us! When completed, please paste a copy of your small survey with your answers and email your work to maxlifeoutcomes@gmail.com. Thanks!
Please rate on a 0 to 10 scale with 0 meaning none at all and 10 meaning the maximum possible.
1)Pain level: Evaluate the amount of physical pain that you currently suffer:
A) without prescription pain medication _____
B) with prescribed pain medication _____
2)Pain frequency: Evaluate how many times per week your overall pain level is at a 5 or above:
A) when you are using less pain management medicine than prescribed? _____
B) when you are using the maximum pain management prescribed? _____
3)Emotional pain: Evaluate what level of emotional pain that you suffer overall because of chronic Lyme Disease ____
4)Employment:If you are self employed or working for a company, evaluate how many productive hours of work per month are lost because of chronic Lyme Disease?(include doctor or counseling visits and/or related illnesses or other conditions that take you away from work production either at home or at any job site) ____
5)Financial problems: Evaluate the level of financial stress caused directly by chronic Lyme Disease ____
6)Access to reasonable medical care: Evaluate the ease of access you have to reasonable medical care from chronic "Lyme literate" doctors and useful Lyme related medical care ____
NOW, please copy and past this survey to your email account and forward it to my email address at maxlifeoutcomes@gmail.com.
Thanks for completing this survey! Your name will be kept confidential and your email address will be kept private. Your participation WILL make a BIG difference because we have such a finite population of chronic Lyme sufferers here in Oregon. The information you provide will be quantified along with all other responses and presentated to medical and government officials in Salem from an independent reseaerch company. They will respect the findings as accurate. You can also email the same address if you have any questions or just want to get support from a family that DOES care about others who have suffered but are determined to attain healing.
To read more about a new civil rights organization that is gathering momentum in Oregon to bring additional policy changes, click on the website below:
http://www.handeimprove.blogspot.com/
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