Sooner or Later You’ll Be Touched. Are You Confident You’ll Get the Necessary Treatment?

I read the letter from ILADS to Dr. Coussens, where it states: “I am writing on behalf of the International Lyme and Associated Diseases Society (ILADS) to express our disappointment with the lack of balance in the selection of the IOM panel and speakers for the “State of the Science” review of Lyme disease.” In IOM panel and selected speakers for Lyme Disease and Other Tickborne Diseases: The State of the Science. When I was battling Lyme disease years ago, journal writing was one way to get through it. I just had to express my thoughts on this subject.

Why is it available to receive medicine and treatment according to your needs for such illnesses like sinus infections, Cancer, ear infections, AIDS, allergies, heartburn, etc.? But the Infectious Disease Society of America (IDSA) has been standing on the treatment guidelines that “one size fits all”. It has been years and there are more and more poor souls that are suffering with chronic Lyme disease. The guidelines that are used by doctors according to the CDC guidelines need to be changed and updated.

I just don’t understand, there is endless examples of illnesses that use flexible treatment according to the needs of each individual, why not Lyme disease? I have recovered from Lyme so I know if you receive the right amount of antibiotic treatment and unconventional medicine, you can recover.   A few years later it was Babesia; it took a year of a variety of different treatments, however, I recovered once again. Why is the IDSA not open to a flexible amount of treatment for each individual? Why is it that these same IDSA Panel members that refuse to update the insufficient treatment guidelines appear in a majority in medical panels so often that seem to thwart any idea of change?

Some say that the members on the board of the IDSA have a conflict of interest. You should read “The Baker’s Dozen” by PJ Langhoff. I’m not certain what to believe although my research and thoughts are beginning to sway my judgment.  I’m considering this thought more and more. There is medical evidence that shows chronic Lyme disease exists. It seems each day I acquire more and more Facebook friends that have been battling chronic Lyme disease. So, chronic Lyme disease, which supposedly doesn’t exist according to the IDSA, does not seem to be as rare as many are led to believe.

It is the IDSA’s contention that long-term antibiotics, do more harm than good. There are many out there that have recovered from Lyme. Some of these Lyme patients were fortunate that their doctors’ were willing to treat them outside of the guidelines. They were able to reclaim their lives. I recovered after 18 months of both antibiotic and unconventional treatment; I went from a completely debilitated and bedridden state to being able to do all the things that I had prior to my illness. My immune system also recovered; I was stronger than ever. My doctor treated me according to MY needs. I thank the lord that the doctor was adamant in my attaining full recovery.

I sincerely hope that you help me spread this information out to the masses. I know I, and others that are suffering from chronic Lyme disease, cannot do it alone. As Dr. Jemsek says: “What is happening to the Lyme nation is similar to what I witnessed at the beginning of the HIV epidemic in the 80’s…there was complacency for that… disease….became personal and real because it got closer…..sooner or later everyone was touched and the same thing is happening with Lyme disease…” He goes on to say, “That the American public deserves to hear the truth”. He continues to discuss the disgrace of a few in the Infectious Disease Society of America who are an embarrassment to the medical society. Continuing on to state that they have vilified those in the Lyme community… “

Would you like to make a difference (think of the future of your children or loved ones)?  Take a look at the two different viewpoints within the Lyme community.  Once you have read and studied both sites and their viewpoints, let Congress know how you feel.  Help make a difference for the future of all these individuals that are still suffering and the ones that will be diagnosed in the future. 

On the California Lyme Disease Association’s site, they are calling for your support.  As you read further, it states:  “In spite of the recommendations to NIH by Congress, the conference opens with perhaps the most polarizing figure in the chronic Lyme debate– Dr. Gary Wormser of Westchester Medical Center — who chaired the IDSA Lyme guideline panel and whose highly controversial biased views are well known. There are no scheduled speakers with opposing viewpoints of similar scientific weight to balance his presentation about the research gaps in Lyme disease.  Many state-of-the-art scientific researchers and experienced clinicians have been relegated by the IOM and NIH to simply spectator positions.”  For more information on what you can do, read more. 

On the Lymenet, site, there are other organizations that have banned together to give their input.  “September 23, 2010, …As you know, some Lyme advocates have chosen to pull out of the IOM Lyme Disease workshop http://www.iom.edu/Activities/Disease/TickBorne.aspx. They are legitimately concerned that the agenda is heavily biased against the patients’ interest. We respect their concerns and their decision to pull out of the workshop. However, upon careful consideration, we have decided to participate in the IOM workshop to represent the Lyme patient’s perspective and show support for our presenters. While we have our own reservations, we are working hard to improve the agenda.

Here are some facts and thoughts to consider in making your own decision:”  Read more. 

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Research Gaps Report by Lyme Groups Who Pulled Out of IOM Process Entered into Congressional Record

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