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Welcome to ActionLyme, Homepage of the International Patient Advocacy Group.  
[Under construction]

ActionLyme Mission:  Planning and Policy for Public Management of Health Information in Vector-Borne Diseases, in CDC/NIH Default of Responsible Science.

NEWSFLASH:  Public Hearings in New York Nov/Dec, 2001.  Please go to the FAIM.org website: http://www.faim.org/Lyme%20hearing.htm
Please also see the OPMC page on this website for more info.

The objective of this site is to provide links to the available objective scientific data which correlates with Lyme disease subjective and objective symptoms and testing, and links to established Lyme disease sites.

The data will show that the effects of infection with Borrelia burgdorferi can become a disabling Infectious and Immune-Mediated Pathophysiology, very similar to Multiple Sclerosis.

The Symptom Categories of Neuroborreliosis/MS are Cognitive, Neurologic (with additional muscle and joint involvement) and Fatigue.  Physiologic changes found in Neuroborreliosis fairly match symptoms found in other illness with the same physiologic changes, such  as MS, Guillain-Barre, Bannwarth and the like.


The new information that confirms the pathophysiology of MS and Lyme has not been published, yet this data was collected during the 1997-2000 NIH Chronic Lyme Disease treatment trial by Tufts:  The high incidence of the presence of HLA-DQB1*0602 on Chronic Lyme patients.  To quote Dr. Klemper:

"It turns out that if you look at the first 51 patients with post- treatment chronic Lyme disease, the patient population that participated in our study, there was a very high incidence of DQB0602 with an odds ratio of 770%.  So it may well be that exposure to THAT organism with THAT background of HLA haplotype may lead you to develop chronic symptoms.  That is a hypothesis that needs to be tested.  It would obviously lead to an entirely new form and approach to therapy."

The non-reporting of objective data over the reporting of subjective, invalid data (the assessment tools FIQ and SF-36), calls into question integrity in reporting scientific data, and the validity of further and previous conclusions from such analysts.  The FIQ was never validated for Lyme disease.  The SF-36 is not to be used in cases of cognitive impairment.

Incomplete or incorrect data and sites will be given special consideration such that patients can avoid the hazards associated with dis-information about "Lyme disease", and also because they hold some amusement value.

A patient is a consumer.  Note the Disclaimers on all of these dis-information sites.  Note that these dis-information sites have some relationship to the authors of the 2000 IDSA Guidelines on the treatment of Lyme disease.  So, while in private association to organizations which give incomplete information about Lyme disease, and such individuals don't want to be liable for medical negligence as a result of their statements, IDSA apparently has no problem with these individuals as authors of their guidelines.  And neither do vaccine manufacturers seem to mind these disclaimers, although that then calls into question, "Who *is* liable for vaccine failure or adverse event related to asymptomatic infection that isn't detected by inferior serodiagnostics?"

If it is the consumer, due to these disclaimers, it is then the consumer who disclaims the CDC as well as the IDSA, since the contributors to the disclaimed sites are also contributors to CDC policy.


"Lyme Disease", by CDC definition, refers largely to the early EM stage or Lyme *arthritis* associated typically associated with CDC-positive serology, which was never empirically derived, never validated, and generally represents a very small minority of early, untreated, or Lyme arthritis patients; mostly the HLA-DR4/2 arthritis prone haplotypes.

Accuracy of the CDC standard tested in the field is not greater than 22%. The accuracy of the CDC serodiagnostic standard for late, treated, Lyme disease has never been assessed, however, this data is available to report, as it was discovered in the 4.7 million dollar NIH re-treatment of Chronic Lyme disease study, halted November 2000 for failure to show a difference in outcomes, as measured by the subjective, invalid scales, which calls into question the capacity of the data safety monitoring board to monitor the study, since the assessment scales were not valid.

IgM in late Lyme disease is valid and constitutes a treatable case.
Therefore, specific markers in IgM antibodies should be expanded.
Serodiagnostics are limited by 1) outdated Western Blot and ELISA immunoassay methods, which are commercially viable because they can be sold as a kit, but do little for public health, and 2) the limited *acknowledgement* of specific and non-specific markers of pathology related to borreliosis, which appears to be acceptable to "PLANET CDC".

--believes they can control tick-borne diseases by satellite surveillance. --believes it is acceptable to perceive Lyme disease as an arthritis, when everywhere else on Earth, spirochetal infections of humans are known to be neurologic infectations.
--believes it is acceptable to never update serodiagnostics to include all borrelia that cause Lyme-like disorders in the United States. 
--believes it is acceptable to qualify a vaccine based on a false standard
--believes it is acceptable to deny the existence of vaccine related adverse events in support of this false standard.
--is allied with Managed Care to limit treatments for various illnesses and calls this alliance "Agency for Healthcare Research and Quality".
--believes society will continue to respect CDC as servants public health.

CDC has dissociated itself from the term "human".


The treatment for the Chronic Neurologic Lyme Disease/MS has not been established due to the difficulties introduced by known and unknown co-infections, and the variables of Borrelia strain, patient immune potential, and the lack of publication of the actual objective markers of illness, over the publication of invalid assessments such as the Fibromyalgia Impact Questionnaire to assess "Lyme disease" treatment outcomes.  Therefore, although many millions of US tax dollars have been spent on research into treatment of Chronic Lyme disease, we have absolutely ZERO reliable data from controlled studies on outcomes,
as of October, 2001.

Chronic CNS Lyme disease is nothing like Fibromyalgia, physiologically, although many FM patients are actually Lyme patients and are misdiagnosed.
Chronic Fatigue Syndrome (CFS)is very similar to Neuroborreliosis and MS.

CFS patients have also been abused by CDC endeavors and would do well to advance resolution of their illness to study Lyme disease and the bogus CDC serological standard.

There is no cure for chronic neurologic Lyme disease, and treatment is intended to alleviate symptoms, as that would be within the objectives of the International Human Rights Declaration on the Use of Biotechnology.  Some patients infected with Borrelia burgdorferi are able to resolve a majority of symptoms.  We now know that there is a neuroautoimmune correlate in Chronic Neurologic Lyme, HLA-DQB1*0602, in addition to the chronic joint inflammation.

The term "Post-Lyme Syndrome", probably refers to either sequelae, or ongoing hyper-neuroautoimmune response, or ongoing infection plus ongoing hyper-neuroautoimmune response; as Dr. Klempner says:

"So it may well be that exposure to THAT organism with THAT background of HLA haplotype may lead you to develop chronic symptoms."

We can't know the direction of research if, for example, 4.7 million dollar grantees fail to report the objective findings over the subjective.
We can't respect the opinion of data safety monitoring boards, if these data safety monitoring boards fail to determine the validity of assessment measures employed in studies as a first step in qualifying the status of results, or "monitor".  It has not been proven that MS/Lyme occurs in the absence of infection.  Preservative resampling of Bb DNA-negative CSF and synovial fluids does not make the samples more negative.  The samples themselves are known to not harbor the spirochete, fluids, or we would not have the problems in Lyme diagnosis that characterize the controversy in treatment-- or the opportunities for Insurance Companies to deny treatment.

SO WHERE *DO* WE GO FROM HERE?- Patients can't and won't expect or accept that leadership to come from people who report partial, invalid, "data" as science, and neither do we respect journals that find such non-science acceptable to print.  We will go in the direction the data points, *if* we ever get the information- the *data*, and the objective lab data,
ONLY- that the US taxpayers paid for.

From The International Human Rights Declaration:
"28. With respect to applying bioethical concepts to relevant aspects of human rights, principle 2.1 states that: "important opportunities exist for applying bioethics concept in developing the content of human rights relating to health, health protection, and health care. Such rights can be clustered into three categories, viz.:
 - rights to health care and to the benefits of scientific progress;
 - rights relating to information, association, and freedom of action that could empower groups to protect and promote their health; and
 - rights relating to self-determination and integrity of the person, including rights to liberty and security and the right to private life."

We have a right to the information and we have a right to medical care.

This site was developed by Lyme disease patients for Lyme disease patients and practitioners.
Comments and ActionLyme membership inquiries:
ActionLyme Co-Moderators:
InformationAnnie @ informationjunki@aol.com
Gayla @ gadavies@aol.com
kathleen @ kathleen.dickson@SNET.Net
Kay @ b10g7@mediaone.net
Website Content: Kathleen Dickson
Much gratitude to the Webmaster :)

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