I read the Washington Post article and was so disgusted and shocked. I went onto the Washington Post website and submitted the following as a letter to the editor, referencing the original article. Please read the article and consider going to the Washington Post home page, then clicking on Help & Contact Info (at bottom of page), then click blue box Contact Us (at upper right). Then click Journalism. Then click Feed Back on Article, Then write your response or copy paste my response (see below). You could also edit my response to your liking. We can't have CDC bias like this published in our nation's top newspapers and ever expect insurance to start covering valid treatments for our disease. What we need is large numbers of emails so the Washington Post pays attention and sees were organized. Hopefully, since I'm less that 100 miles away from DC, a lot of emails will stimulate the reporter to contact me (or better yet, all of us), so we can begin to set this matter aright. I still drive and am willing to drive to DC to help get the misinformation fixed. Thanks to those on this site who provided the news article references. If you do write your own response, please also publish it here. I'd love to read it. Ben
In this article, there are blatantly false statements. I personally am a long term Lyme sufferer. I am facilitator for the Richmond Virginia Chapter of the National Capital Lyme Disease Association. I know people whose lives have been saved by IV antibiotic treatment for long term Lyme. I know one person who was bedridden before IV antibiotic and now after 6 long years of battle is finally putting his life back together. Your statements indicating that IV antibiotics are not a valid treatment option are 100% false. In addition, your statement that there is "standard Laboratory testing for Lyme bacteria" is also false. Western blot tests for antibodies that may be a reaction to Lyme. CD57 tests for low white blood corpuscle levels that may result from Lyme. C4a tests for high complementary protein levels that may be an immune system reaction to Lyme. None of these approved tests actually test for Lyme, which is why doctors must use clinical diagnoses, the kind that your reporter disparages. I know many people who have had false test negatives, particularly with the Western blot, but who had Lyme. You should have gone to ILADS.org to find an MD doctor to give the other side of the story. One-sided false reporting is totally unacceptable, especially given the tradition of Woodward and Bernstein. On behalf of all long term Lyme disease sufferers, I ask that you retract the false information in this article and contact ILADS to comprehend the truth about chronic Lyme disease. Further, you might contact the FDA and find out why they won't allow live blood analysis, which actually does allow a lab tech to look with a 5000x microscope and see Lyme bacteria. Lastly, if I can be of assistance in helping to print the truth about long term Lyme disease, I would be glad to help. I'll get you interviews with long term Lyme sufferers who have been cured through IV antibiotics...whatever you need. The doctor in this article would be another place to start.
http://www.huffingtonpost.com/dana-parish/where-cdc-guidelines-fail-leading-lyme-doctor-succeeds-part-1_b_9318660.html Thanks for reading, Ben
I really appreciate what you are doing Ben!!! Thank you!
Your sentence, " Further, you might contact the FDA and find out why they won't allow live blood analysis, which actually does allow a lab tech to look with a 5000x microscope and see Lyme bacteria." ----Is so true! Right on! I have looked at many blood samples with a microscope and can verify this is true. In fact, you really only need 400x to see them (in darkfield or phase contrast).
I wish Trump would appoint a special team to look into the controversy of Lyme disease as he has for vaccines. And, then, to take out the trash....(all the chronic Lyme disease Denialists)!!!