Fighting For Our Lives
Lucy Barnes
The Early Years
Fighting For Our Lives & Yours
Lucy Barnes
Consider the weight of the scientific literature since Lyme disease was discovered. The bad info was and still is backed by all agencies of the federal government, all state and county governments, all infectious disease societies, all neurology societies, all rheumatology societies, Yale, Hopkins, Hold the Mayo Clinic, Mass General, etc. This bad boy list gets even longer if you consider the upcoming IDSA's list of new Lyme disease guideline panel members.
American Academy of Neurology
American College of Rheumatology
Infectious Diseases Society of America
American Academy of Family Physicians
American Academy of Pediatrics, Committee on Infectious Diseases
American Academy of Pediatrics, Section on Emergency Medicine
American College of Physicians
Association of Medical Microbiology and Infectious Diseases – Canada
Child Neurology Society
Entomological Society of America
European Society of Clinical Microbiology and Infectious Diseases
Pediatric Infectious Diseases Society
Consider the fight when the 1st Lyme disease guidelines came out and insurance companies- with massive power- began supporting them and used them to make decisions against us. The insurance friendly guidelines set the “rules” for diagnosis, treatment and payment reimbursement.
The 1st official guidelines Link Here were by the IDSA using a lot of CDC information for support, as were the second set. (Published in 2000, updated in 2006.)
Look at the References List on the first set of guidelines. Not one LLMD or their articles are listed there.
At the time only a handful of sick volunteer patient advocates and two handfuls of newly designated LLMDs scattered across the country were trying to educate, support, diagnose and properly treat ALL of the patients coming in- swarms of them.
We had all been fighting our best fights-almost killing ourselves in the process- with no funding, no help and no solid science, no good ongoing research, no good tests, a bad vaccine hitting the market, a poor reporting system and no solid cures or solid answers to offer.
We gave it all we had for many years as more and more people got sick and very few volunteered to help us once they got the help they needed. Doctors were having to hide from the medical boards and patient advocates as well as the doctors were being stalked, trashed and threatened as the epidemic spread out of control.
1st time “chronic” Lyme was used (in modern times- not just describing the rash from an unknown source). Notice the lead author’s name and the year published.
Chronic Lyme arthritis. Clinical and immunogenetic differentiation from rheumatoid arthritis.
Steere AC, Gibofsky A, Patarroyo ME, Winchester RJ, Hardin JA, Malawista SE.
Ann Intern Med. 1979 Jun;90(6):896-901.
PMID:
312615
The IDSA, et.al knew this new disease could and would become chronic and rather than looking for a cure they focused (in an incredible rush) on getting patents for tests, spirochete “pieces”, etc., and making a lousy vaccine while making nice with insurers.
Some of the Earliest LLMD Publications- Selected Articles. It took many years to get any of our studies published and lots of struggles to do so. The IDSA has members and supporters on nearly all, if not all of the journals' editorial boards. Just last week someone on our side told me they had a miserable time trying to get an article published and had to do many, many rewrites for it to be “accepted”.
1st article published with a LLMD as an author.
Spirochetes isolated from the blood of two patients with Lyme disease.
Benach JL, Bosler EM, Hanrahan JP, Coleman JL, Habicht GS, Bast TF, Cameron DJ*, Ziegler JL, Barbour AG, Burgdorfer W, Edelman R, Kaslow RA.
N Engl J Med. 1983 Mar 31;308(13):740-2.
PMID:
6828119
* Notice Dr. Cameron's co-authors (blue font). Not a fun bunch.
The neuropsychiatric manifestations of Lyme borreliosis.
Fallon BA, Nields JA, Burrascano JJ, Liegner K, DelBene D, Liebowitz MR.
Psychiatr Q. 1992 Spring;63(1):95-117. Review.
PMID:
1438607
Nine years later 3 of our LLMD’s were together on a publication. All the while they were being attacked left and right, were trying to organize & educate and trying to keep up with a huge and growing patient load. At the time Dr. Charles R. Jones, for example, was working 7 days a week- often long into the night- and still couldn’t help all of our children. There were no other pediatricians properly treating children for many years.
Late-stage neuropsychiatric Lyme borreliosis. Differential diagnosis and treatment.
Fallon BA, Schwartzberg M, Bransfield R, Zimmerman B, Scotti A, Weber CA, Liebowitz MR.
Psychosomatics. 1995 May-Jun;36(3):295-300. No abstract available.
Physician preferences in the diagnosis and treatment of Lyme disease in the United States.
Ziska MH, Donta ST, Demarest FC.
Infection. 1996 Mar-Apr;24(2):182-6. Review.
PMID:
8740119
* 1998- 1st Lyme related article by a chronically ill Lyme patient was published. Link Here.
Long-term outcomes of Lyme disease.
Sherr VT.
JAMA. 2000 Jun 21;283(23):3068-9. No abstract available.
PMID:
10865291
Decreased CD57 lymphocyte subset in patients with chronic Lyme disease.
Stricker RB, Winger EE.
Immunol Lett. 2001 Feb 1;76(1):43-8.
PMID:
11222912
Sapi E, Kaur N, Anyanwu S, Luecke DF, Datar A, Patel S, Rossi M, Stricker RB.
Infect Drug Resist. 2011;4:97-113. doi: 10.2147/IDR.S19201. Epub 2011 May 3.
PMID:
21753890
Add
1983-2011
Approximately 7 LLMDs made it to the journals with their first article- in 28 years! And funded research by IDSA and its supporters (CDC, NIH, et. al) had thousands of articles by then. A handful of articles is not enough proof to show we were right and the rest of the world, the so called self-designated “authorities”, were wrong, but we kept on pushing as fast and hard as we could.
And as the many attorneys I approached said when I presented our skimpy “evidence” in an attempt to get some help- "it is not enough". They also said when patients were being destroyed from lack of proper treatment… "you can’t sue someone (IDSA/CDC) for being stupid”.
Volunteer Lyme Advocate Articles
After The Bite- over 125 articles since the 1st article (from our side) was published anywhere (1998 Lyme Time You Knew in several Maryland Eastern Shore newspapers). Link Here
Lucy Barnes