Submission- May 10, 2018 Meeting- TBD Working Group
May 6, 2018
Dear Tick Borne Disease Working Group Members,
Thank you for trying to make improvements for those suffering from tick borne diseases and those who will contract these infections in the near future.
Over the past 30 years federal funding for Lyme disease research was awarded to the same small group of “researchers” who produced the list of conclusions noted on the attachment below (pgs. 3-6). Each and every one of these "official findings", many still actively and strongly promoted by the IDSA and CDC, have been disproven by an overwhelming preponderance of the evidence.
However, these non-evidence based theories didn’t die a swift death as they should have. Instead they lingered on, often grew in acceptance because there were few if any rebuttals (due to lack of funding) and eventually these misnomers spread nationally and internationally causing more harm and destruction to patients world wide.
Researchers responsible for fabricating the inaccurate conclusions were not questioned or sanctioned when their studies were proven faulty. Additionally, their studies were not reviewed in depth by anyone not already positioned in their “camp”- - someone who had the desire and the power to put an end to their fraudulent work products and eliminate their wasteful spending so the limited resources could be better utilized.
On May 1, 2008, and only after a lengthy anti-trust investigation into the IDSA Lyme disease guideline authors practices, Attorney General Richard Blumenthal (CT) summed up his findings and stated in part:
"The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion.” Source
Ten years after the AG’s legal findings were released, the public is still being subjected to the same grossly outdated (2006) treatment guidelines and the same failed lab tests. Additionally, the authors and their supporters continue to work for and consult with insurers (hearings, court, disability) against patients and the doctors treating them; and patents on woefully inadequate tests are still producing financially for the patent holders.
The same small group of discredited researchers were still free to repeat the same basic studies that produced the same outcomes in order to support the same previously failed conclusions. And as you now know, the results have been disastrous.
Rather than these tax-payer funded agencies and researchers admitting they were wrong and/or reaching out to make corrections or positive changes to benefit those still suffering, they each have a long history of avoiding the questions and complaints and then waiting until far too much damage has been done and the outcry from the public is so great they are forced to act- to “do something”. During that time millions of innocent people have become much sicker, chronically ill and often disabled from the lack of prompt attention and appropriate treatment.
Granted, sometimes people make mistakes. But, how wrong can they be and how long will this travesty and these injustices be allowed to continue unaddressed? How many more people will suffer as a result of their incompetence and self-serving actions? Enough is enough!
How Wrong Can They Be?
1. Lyme is caused by a virus.
WRONG! It is caused by bacteria. (More information here.)
2. Lyme should not be treated with antibiotics.
WRONG! Lyme is a bacterial infection which, like other bacterial infections, is susceptible to appropriate antibiotic therapy. (More information here.)
3. If you continue to have Lyme symptoms after contracting Lyme disease and have been treated with the recommended (CDC, IDSA) short course of antibiotics, no additional antibiotics are necessary.
WRONG! Standard antibiotic protocols have been found to be extremely unreliable in producing a cure for Lyme disease. Retreatment has been proven to considerably improve the patient's condition in many cases.
4. Blood tests the IDSA, CDC and their partners developed (and patented for profit), are reliable.
WRONG! The tests have been proven to miss up to 75% of people who are infected. (More information here.)
5. There are many false-positive test results.
WRONG! There are an extraordinary amount of false-negative test results.
6. Lyme disease is easy to diagnose and cure.
WRONG! Lyme disease can mimic countless medical conditions and a cure has never been developed.
7. Reporting practices are sufficient and give us a good picture of the spread of Lyme disease.
WRONG! The actual numbers of Lyme cases is over 10 times what is currently reported.
8. After treatment people do not have Lyme, just the "aches and pains" of daily living.
WRONG! Countless people have become chronically ill, disabled and many have died.
9. There is no evidence chronic Lyme exists.
WRONG! There are over 1,000 scientific studies proving it does exist, and millions of people suffering from symptoms of chronic Lyme disease. (More information- chronic Lyme definition on pdf at the bottom of the page.)
10. The federally supported IDSA Lyme Disease Guidelines represent the best of the science.
WRONG! They were found to be developed by a handful of people with conflicts of interest and are not successful in producing a cure for the majority of people.
11. Lyme disease can not be passed from mother to fetus.
WRONG! A plethora of scientific literature indicates simple complications to still births and infant death are possible.
12. There is no Lyme here in -fill in the blank with your State’s name- so you can't have Lyme disease.
WRONG! Absence of evidence isn’t proof of anything. Lyme disease has been documented in all 50 states and 80 different countries.
13. We have no conflicts of interest.
WRONG! May 1, 2008- The CT Attorney General’s investigation proved otherwise.
14. A tick must be attached for 48 hours to transmit Lyme disease.
WRONG! Studies prove otherwise and transmission can occur in less than a few hours after a person is bitten.
15. Two pills of Doxycycline taken within 3 days of a tick bite will prevent/cure Lyme disease.
WRONG! Lyme disease can disseminate throughout the body within hours and multiple studies have proven this claim is absolutely not true.
16. We care about sick patients and want to work with doctors to help them.
WRONG! You just need to ask anyone who was denied treatment and developed the late chronic stages of Lyme disease what they think. Or you can read the ugly attacks on sick patients and their doctors that are published in journals.
17. The standard 2-3 weeks of Doxycycline protocol cures most cases of Lyme disease.
WRONG! Thousands of studies, and thousands of sick patients prove otherwise.
18. You can not have more than one tick borne disease at a time.
WRONG! People can be multiply infected with a number of various organisms.
19. The new vaccine is safe and effective.
WRONG! It was pulled from the market after reports of injury began rising and law suits were filed by those who were injured.
20. Lyme disease can not be sexually transmitted.
WRONG! Multiple studies found spirochetes in secretions from both men and women.
21. Only certain ticks carry certain diseases.
WRONG! Each year more discoveries are made proving that theory wrong.
22. Steroids are a viable treatment for those with Lyme disease.
WRONG! Steroids are contraindicated for all but the most severe complications.
23. Some exercise, visits to psychiatrists and Advil are all that are needed if symptoms remain or become worse after treatment.
WRONG! Co-infections and other sources for the symptoms need to be explored.
24. Prevention efforts are working.
WRONG! Federally funded studies and an exploding number of cases prove otherwise.
25. Blood donations can be safely made by those who were treated for Lyme disease with antibiotics.
WRONG! The Red Cross and others researchers have proven spirochetes can remain active even through the harsh blood storage conditions.
26. Doxycycline is the most effective treatment for Lyme disease.
WRONG! Doxycycline is limited in its ability to kill Lyme disease organisms. There are at least 165 different FDA approved medications already on the market proven to be more effective.
27. There is no such thing as CHRONIC Lyme disease because it has never been defined.
WRONG! It's OFFICIAL and the documentation is overwhelming.
28. Lyme rashes (erythema migrans) must be larger than 5 cm (or 1.9685 inches) for a "secure diagnosis".
WRONG! Lyme rashes have been documented in the scientific literature as being 1 cm (or 0.394 inches) in diameter.
To address the above situation, I respectfully request the following actions be taken:
1.) A strong recommendation to HHS and others by the TBD Working Group for the transfer or dismissal of those previously or currently involved in any federal TBD funded research, including and especially the 2000 and 2006 IDSA Lyme disease guideline authors and any of their co-authors on Lyme and tick borne disease studies. This action is absolutely necessary due to the disastrous way research, education, funding and patient care has been handled for the past three decades by a select few.
2.) TBD Working Group members or independent appointees should engage in strict oversight and monitoring of federal agencies involved in any Lyme disease policies, research and budgets related to TBD. This will help ensure the rogue few and federal agencies will discontinue abusing a system originally created to provide quality research findings and solid solutions to problems faced by millions of people both nationally and world wide.
3.) All future TBD and antibiotic related research grants be patient oriented, closely monitored and approved by all TBD Working Group members before funds are released.
4.) Designate that the majority of government funding for TBD related research be awarded to independent scientific researchers and experienced medical professionals with a history of successfully treating patients with early, late-stage and chronic Lyme and tick borne diseases.
5.) Designate the majority of new funding be directed to finding a cure rather than continuing the focus on stake holder’s money making schemes (patents, vaccines, prevention products, etc.)
Once these measures are secure and fully implemented we can all move forward having faith that a much needed change will take place- one that is absolutely necessary before we can find a cure for Lyme and many other tick borne diseases. Thank you in advance for your efforts in addressing these sincere concerns.
Lucy Barnes, Director
Lyme Disease Education & Support Groups of Maryland
631 Railroad Avenue
Centreville, MD 21617
AfterTheBite@gmail.com
