Thank You Virginia On Doing Your Own Investigation In The Controversial “Lyme Wars”!

I have been following what has been going on in Virginia and its finding of the Task Force for Lyme Disease. Of course, it’s not the only state taking due diligence to search for some answers on the whole controversial mess around the treatment of Lyme Disease in their Final Report. I for one, feel that the Infectious Disease Society of America (IDSA) has failed to open their minds and their eyes to what is out there. May be it is just to save face or monetary reasons.  Most, if they take the time to investigate, will come up with their own conclusions.

The whole thing for me is that there are individuals out there that are really very ill and having a hard time becoming well. Not only do they have to find doctors that listen to them but they also have to find doctors that are willing to do what is necessary for then to feel well and regain their lives. Then, on top of all that, they have to fight the insurance companies to pay for the treatment that they are able to receive. And, in many cases, they are forced to pay those bills out of their own pockets.

Just recently New Hampshire was able to pass a law to make finding and receiving treatment for Lyme Disease and other tick-borne diseases easier: Halleluiah!

Today, I read the findings of Virginia’s Lyme Task Force (June 30, 2011), this is a very good example of how many have come together to do what the IDSA’s Panel should have done years ago. They took an open approach to see and hear all sides of the issue. There were no hidden agendas, no ulterior motives but a just a group of people wanting to do what was best for the future of their children.

I am so glad that there are watchdogs and movers/shakers for those that are continuing to battle Lyme Disease and other coinfections. I am so glad that organizations like the National Capital Lyme and Tick- Borne Disease Association, California Lyme Disease Association  (now LymeDisease.org), Lyme411, Lyme Disease United Coalition, and individuals like Nancy Bourassa, Monte Skall, Lorraine Johnson, Cathy Kettman, and so many more that are out there voicing their opinions and alerting us to what is going on in the continuous “Lyme War” battles.

There are not enough words to express the gratitude I feel for them and the others that are advocating for patients’ rights for the treatment they deserve. In fact, I wouldn’t have enough room in this single blog to name all these individuals fighting for Lyme Disease patients and are making a difference. I only hope that through this website I am able to showcase some of the individuals that are giving everything they have to ensure a better future for those that will fall prey to the parasites that will indeed make others quite ill in the years to come.

I plan to continue going state-by-state to highlight some of those that are striving to make a difference; I know I will not cover all of them because there are many that do not need to be in the spotlight but are in the background doing what is necessary to get the guidelines for the treatment replaced to help those that don’t fall into the “one size fits all” approach and get the appropriate treatment.

Lorraine Johnson did an exceptional job in recounting the key points of the Final Report of Virginia’s Task Force in Yes, Virginia, there is a Santa Claus: Virginia Lyme Task Force Findings Released. However, I’d like to point out a few that I feel that if my PCP or the other doctors I had seen when I first was infected would really have taken the time to consider, I would have never had to endure the “Post Lyme Syndrome” or chronic Lyme Disease for years afterwards.

It took one conscientious neurologist that did what the final report had very nicely outlined. “The CDC case definition is designed for surveillance purposes only. Clinical judgment should be exercised in assessing patients for Lyme disease as meeting the surveillance case definition is not required for the diagnosis of Lyme disease.” He took the time to listen to me, look at all my symptoms, and all the circumstances surrounding me. Then, he did what he could to treat me but also was able to set aside his ego and recommend someone that was more capable of treating me. In my eyes, he will always have my respect in admitting that he did not have all the answers and knew his capabilities.

Virginia has given me hope that others will not befall what so many others are enduring now—“Post Lyme Syndrome” alias chronic Lyme Disease. In the Final Report, it states “the medical community should be educated on the presence of co-infections” which I have found that in most cases those that are suffering often have to deal with much more than just Lyme Disease. Virginia also is setting up measures to encourage would be medical students i.e., doctors, nurses, physician’s assistants, to learn more about Lyme and the other tick-borne diseases. That, for me, means that there is hope that there will be more doctors willing to learn more and be open-minded that Lyme Disease is not as easy to treat as the IDSA claims it to be.

Here are three items that give me hope that others will receive the necessary treatment they deserve. Johnson from California Lyme Disease Association (now LymeDisease.org) also points this out in her Lyme Policy Wonk blog.

“3. There is no scientific basis for concluding that 30 days or less of antibiotics is sufficient treatment for every case of Lyme disease.

5. Expert testimony regarding effectiveness of long-term antibiotics conflicted. We encourage additional studies to evaluate the effectiveness of long-term antibiotics as treatment for Lyme disease.

6. The Department of Health Professions should inform its licensees that the department does not target clinicians for disciplinary action by virtue of their antibiotic choice of management of Lyme disease.”

Thank you Virginia Lyme Disease Task Force for taking the time to do your own investigation to find out for yourselves what is really going on out there in the controversial “Lyme Wars”. Thank you to everyone that was involved and thank you to those that are still out there fighting for those who are too ill to do it on their own.

Find out more about The National Capital Lyme and Tick- Borne Disease Association and New Hampshire’s Lyme411.org.

LYMEPOLICYWONK: Yes, Virginia, there is a Santa Claus: Virginia Lyme Task Force Findings Released

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