Responses To Denial of
Chronic Lyme
Chronic Lyme Disease and the "Axis of Evil"
Raphael B. Stricker; Lorraine Johnson
Full Article- https://www.medscape.com/viewarticle/586226
FRANCE- January 2019
Marc Gentilini
Thinks Chronic Lyme Is A
Scam and Should Be Condemed
He hates Lyme patients,
Lyme volunteer organizations &
Lyme treating doctors!
See his attached article linked below.
My Opinion
He needs to be sued.
What he is saying is totally false.
Probably fed to him by McStupid.
Link To Article- https://docs.google.com/viewer?a=v&pid=sites&srcid=ZGVmYXVsdGRvbWFpbnxpZHNhb25seW1lfGd4OjRlZWI1MjVkNTAyZmQyODg
Do You Want Change?
Lucy Barnes
Talking with people about "Incentives" and "Output" and "Outcomes" for improving our situation is sweet, but unless the problems are addressed full force and head on, those doing the talking will be fighting to basically sustain the status quo. This will allow the Lyme wars to drag on with no end in sight.
If that happens, all of us will be resigned to watching the process, just as Monday night football spectators do, with no input, no room for changes and no advancements, while more and more people become ill and suffer. Enough!
*%(*&^$- If you are going to eat a cookie, EAT A COOKIE!
If you are going to do something right, DO IT RIGHT!
After THREE decades of all of us fighting and compromising we've made some progress, but so much more is needed. And now is the time! We have the science, the sheer force, the ear of those in power, the monstrous size of the community and the desperate need.
To protect the public, the patients and the health care professionals involved we need to be doing a really rowdy Peppermint Twist or some other serious foot-stomping clogging moves, not a meandering Tennessee waltz around the nit-wits and the major problems facing so many.
Here are some suggestions for how to make much needed, serious, positive changes for the better.
After all, we don't need left over crumbs the CDC & IDSA toss our way, or their stinky do-nothing attitudes any more.
If you are going to ask for something,
ASK FOR SOMETHING BIG!
Reporting
Positive cases will be determined by lab reporting using each labs in house criteria. Doctors won't be required to report cases and health department employees will no longer have the ability to discount cases for one reason or another.
The final local and state figures will be increased by 50% based on the lab test results to take the place of cases where no tests were performed (a growing trend).
No more long forms, no more probable cases, no more funds to state and local health departments for employees completing forms, etc. All data goes to central data base and the task of presenting it will go to (one rep from each state) that is a Lyme patient.
Endemic is any state where 1 cases of Lyme has been reported in the past.
Ditch the surveillance criteria totally and announce it has been done and is no longer valid on all government websites. Take the job away from the CSTE.
Prevention
Spray, bait boxes, warning signs & handouts along high use areas in schools, public parks, forests and wildlife sanctuaries in top 25 endemic states. Repellents will be offered (free) in all public buildings within those places for employees and visitors. In 3 years the other states get the same thing.
Tick removal tool and info packets, and prevention packets with repellents and info to those requesting them for free will be distributed. These packets will be assembled by Lyme patients in need of work and they will be paid 2 x that of the current minimum wage.
Public announcements for tv, radio, internet that are designed by already established Lyme related organizations that cater to chronic Lyme patients. All stations, public media outlets will be required to air the announcements 5 times per week for 5 years.
Brochures for Red Cross, Salvation Army, sheriff’s offices, aging agencies, power companies, meals on wheels, phone companies, and all outdoor working professions.
Testing
All labs must have note that only 74.5% of those infected have a positive tests- clear large lettering in red at top and bottom of all pages.
All bands will be reported on all tests (with references to meaning).
ELISA doesn’t have to be done. Doctors can pick and chose what test they want to order.
A standard TBD panel will be offered for any patient that has been in an area endemic for ticks and diseases they carry.
Training
Standardized form for all patients of TBD to explain the differences in treatment protocols when going to doctors offices and hospitals. ALL doctors offices will use them.
Hospital training for all employees.
Require CME courses for all doctors on all TBDs that offer both views. Patients must go to “certified” doctors for treatment.
All licensed health care professionals must have educational literature in plain view in their patient waiting areas at all times. Stand to hold brochures will be hand crafted by Lyme patients in need of work- 2 X minimum wage.
Studies
25 doctors from 25 states will be provided a free research analyst to review patients charts in office 4 x year for two weeks each quarter (their choice of picks), to enter stats and treatment info into a computer program to determine how many cases, what is working and what isn’t. Once a year, by June of the following calendar year, a report will be generated combining the findings state by state and nationally, and they will posted publicly.
All NIH and other government grants will NOT go to any previous grantee for a period of 20 years. That money (average for past 25 years spending) will be used to pay for this initiative.
A new online journal will be government funded and it will be specifically for publication of any and all TBD disease studies. No IDSA/CDC allowed to submit.
Medical Treatment Guidelines
Panel of 10 members (treating doctors, scientists, researchers only) each from both sides (both sides pick their own 10 people and no government employees in group) on panel to develop practical treatment guidelines for tick bites, early Lyme and chronic Lyme and TBD. Deadline 1 year to completion. Include 10 additional patient and organization reps, making total of 30 people. All patients must have experienced chronic Lyme and TBD themselves and/or have family members with chronic Lyme (more than 6 months). No IDSA guideline authors allowed. Those will be the only guidelines.
CDC & Insurers, no more consulting with IDSA guideline authors. All profits from patents CDC and IDSA guideline authors receive will go to non profit Lyme organizations for research, education and patient support. These funds will be divided into 50 state lots, based on population figures.
Schools teach about ticks and Lyme disease in every grade from K-9. Standardized powerpoint or video program, or on TV.
Patients Needs
Chronically ill patients will be provided an in-state trained (by LymeDisease.org) patient navigator free of charge, who has been certified by completing and passing LDA developed training and a test. (IDSA doesn’t do “chronic”) Lyme patients will be offered jobs (2 X minimum wage) to do this work while they are being treated.
All of the items discussed and info will be available in multiple languages and access to it will be free by way of online website.
An online doctor referral system will be offered listing health care professionals in all fields in all states with the years of experience and list of all training related to TBD that they’ve had.
Costs For Initiatives
No vaccine funding next 10 years (waiting for accurate tests to have trials), then renewal considered.
Insurers, no exceptions, pay for treatment- with patient automomy the rule.
TIP- Leave test development demands off your "Wish List" and let free market compete.
TIP- Leave FDA out of any processes due to the corruption power by Auwaerter at Hopkins, the IDSA/CDC and other seriously questionable members on the approval and review panels, and to prevent CDC from delaying the need-to-move-forward process by years while they come finish developing tests and securing patents to profit from in the future.
Where Are We Now?
Lucy Barnes
The definition of CHRONIC LYME DISEASE
Persistent Borrelia Infection In Patients With Ongoing Symptoms of Lyme Disease
Aggressiveness, violence, homicidality, homicide, and Lyme disease
Suicide and Lyme and associated diseases
March 2018- Over 700 scientific articles published since the 1940's strongly support the most recent findings indicating what many already knew- live spirochetes are responsible for CHRONIC LYME DISEASE and if not adequately treated people will remain ill, become disabled and possibly die.
Sadly, too many people have suffered, some an entire lifetime and many have died waiting for these answers- these truths- to be "officially" documented and brought to light so everyone could get proper treatment.
Those responsible for trying to sweep us under the rug and discredit us while dismissing our concerns as we and our loved ones suffered, are the same ones that squandered millions of dollars for research funding for Lyme disease over the decades.
That handful of ivory tower residents and their horrendous crimes were supported by big business and many government officials, with blessings and incentives to sustain the status quo.
To be clear...
Camp A- Infectious Diseases Society of America (IDSA) and its supporters, Centers for Disease Control (CDC), those we asked for help who wouldn't listen or take action, and the insurance industry
Camp B- everyone else in the world that has any scientific knowledge, a good heart and/or common sense
I am pleased to report in my opinion these most recent studies will provide some relief for all of the sick patients and the growing number of volunteer soldiers who have given of themselves so others may get some relief.
Thanks to Camp B's hard work and determination we finally have the strongest evidence to date proving Camp B was right all along!
Live spirochetes are responsible for the symptoms of CHRONIC LYME DISEASE.
This proof blows away Camp A's latest made up bunch of bologna- Post Treatment Lyme Disease Syndrome (PTLDS).
So today we shine!
These publications have a strong foundation and should end the insane Camp A propagated Lyme Wars against Camp B once and for all- the bloody battles that spread across the country then world wide, and continued day after day, while more and more people became unwilling participants struggling to advocate for each other and struggling to survive.
With massive, self-appointed power and bank rolls bigger than Mars, Camp A, rather than reaching out to help patients, repeatedly poked at (to the point of nearly slaughtering) Camp B.
Most recently Camp A claimed Camp B had no "official definition" for CHRONIC LYME DISEASE. They also said there was no proof CHRONIC LYME DISEASE exists and therefore, needs no treatment.
For Camp B, having a definition and proving live spirochetes were viable after treatment would toss Camp A's Post Treatment Lyme Disease Syndrome (PTLDS)- that needs no treatment- out the window once and for all so sick patients could have better access to treatment.
The most recent studies shared below, that were supported by many good people and their earlier works, proves beyond any doubt...
1.) live spirochetes have been detected in humans who have CHRONIC LYME DISEASE even after receiving Camp A's recommended and supposedly curative treatment.
2.) there IS such a thing as CHRONIC LYME DISEASE and here is its official definition.
3.) the unthinkable damage to humans is far, far greater than the handful of symptoms printed on a piddly list Camp A touts as the only true symptoms stemming from Lyme disease.
Camp A- here are those documents. Do I need to tell you what you can do with them?
Camp B- take a break, then please come back to clean up the rest of the mess Camp A made so no one, NO ONE, is denied treatment for CHRONIC LYME DISEASE again.
The definition of CHRONIC LYME DISEASE
Persistent Borrelia Infection In Patients With Ongoing Symptoms of Lyme Disease
Aggressiveness, violence, homicidality, homicide, and Lyme disease
Suicide and Lyme and associated diseases