Melissa Kaplan's
Lyme Disease
Part of the Anapsid.org Chronic Neuroimmune Diseases Information Resources for CFS, FM, MCS, Lyme Disease, Thyroid, and more...
Last updated January 1, 2014

Lyme Disease

An exercise in nailing Jello® to a wall.

 

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News Flash! Hell Freezes Over! CDC "Announces" Lyme Disease Is Underreported!

We've known that for years, of course, but it's nice that the CDC has finally noticed. Well, admitted it. Here's an article that discusses the CDC's "discovery" and summarizes the issues facing us. Prevalence of Lyme Disease in the U.S. is 10-Times Higher Than Previously Reported, by Dr. Mercola.

Now, if only the CDC would stop promoting the ISDA's insurance industry funded "treatment guidelines", more people might actually start having a chance of getting better.

Of course, for every admission gained, there remains the blind eye. Read TICKED: The Battle Over Lyme Disease in the South, a long e-article by Discover InDepth (Discover Magazine).

Should we trust the CDC? The Lyme Disease Association doesn't think so (and, frankly, neither do I, given their track record on so many devastating illnesses). Read part of Phyllis Mervine's testimony at the CDC's June 11, 2013 meeting: Should Patients Trust the CDC?

The Lyme disease community--physicians, victims (er, patients) and their families--have repeatedly sought redress from the CDC on this and related "research" points. This Lyme Disease Community Blows the Whistle on Corruption Within the CDC article by Jessica Bernstein pretty much says what I've believed all along: the CDC's 'announcement' probably coincides with the upcoming release of the new Lyme vaccine. Hopefully, this new one by Sanofi Pastuer won't give people Lyme disease like the last one did...

Yes, too many things have still not changed...

Scarily enough, there are still health care providers out there who do not believe Lyme Disease is a real disease. Like those with CFS, FM and MCS, people with Lyme are told they are "just depressed" or "trying to get attention" or that it is "all in your head" (to be fair, since the spirochetes or their toxins can cross the blood brain barrier, it is in your head, though this is not quite what these doctors were implying...). If this typifies the response you got from your doctor, it's time to find a new one.

Of course, most doctors rely on what the CDC and their state and county departments of health tell them. Anyone who has watched the CDC in action over the past several years (okay, decades) know that whatever it is they are doing, it has little to do with disease control and prevention, especially when it comes to organisms as changeable and adaptive as parasites.

The CDC--and insurance companies--take their cue on what Lyme disease is and how to treat it from the ISDA, a group of self-serving physicians who selectively review only that literature which agrees with their premise: that LD is easily and quickly treated, and if you're still sick, then you're clearly mentally ill. Physician Joseph Schaller discusses the situation in a letter to the editor of The Scientist in February 2007, in response to the dismissive article, State official subpoenas infectious disease group.

From January 1 through May 10, 2003, there were 1727 cases of Lyme disease reported to the CDC. It is estimated that only one out of every 10 cases of Lyme disease is reported to the CDC. --Lyme Disease Foundation

"...Lyme disease has become a permanent part of America's public health landscape. It provides a warning and example of how an apparent state or regionally-centered problem can grow to become a national problem. Instead of implementing a proactive, nationwide animal-borne disease management strategy, the public health response to Lyme disease was left to evolve as the disease spread across country." (From Animal-Borne Epidemics Out Of Control: Threatening the Nation's Health, published by Trust for America's Health)

 

 

In a recent talk to a group of tickborne infection (TBI) patients, my TBI doctor related what he tells physicians who are trying to understand why Borrelia infections are so difficult to nail down and treat. The problem, he said, is in thinking that Borrelia is as simple an organism as that other too well known spirochete, syphilis (Treponema pallidium). Syphilis is easy to diagnose and easy to treat when caught in the early stages.

But just because it is a spirochete doesn't mean that Borrelia acts like T. pallidium, rather, is is more like tuberculosis in that it can lay dormant for years in to body, and takes prolonged courses of antibiotics once it does flare. In addition, Borrelia has many more genes than does T. pallidium that are dedicated to evading detection by tests and the immune system, enabling the dozens of known subspecies/strains of Borrelia to protect itself, even when finally treated appropriately.

This isn't news, by the way, but most physicians, state medical associations, university hospitals, and public health agencies prefer to keep their heads buried firmly in the sand than admit that Babesia, Bartonella, Borrelia, and Ehrlichia are far more complex than originally thought, making them extremely difficult detect and treat, especially in people who have been sick and improperly diagnosed and/or treated for years.

It is apparent that their egos are more important that the public's welfare, given the many ways these organizations and agencies, charged with informing and protecting the public's health, continue to fail to do so.

 

Message from Lyme
P. Wahlberg., Asvagen Mariehamn, Aland.
Nord Med. 1993;108(5):157-8. (Pubmed Abstract)

The background to the discovery of Lyme disease teaches a salutary lesson. The symptoms and signs of this disease had been observed by doctors for a century, particularly in the Scandinavian countries, without anybody being able to draw the right conclusions. The first patients were identified in the USA by their relatives or by themselves. Recognition of their plight by the medical profession was chiefly due to the patients' tenacity. We must remember to pay attention to what patients tell us; they may often be right, even when they seem to be wrong. Where fact and theory are incompatible, it is theory, not fact, that needs to be amended. In all likelihood, we all from time to time observe disorders in our patients that are inconsistent with established scientific models, but which we nevertheless attempt to squeeze into these models. Such an approach is not uncommon in the history of medicine. The message from Lyme calls for humility and reflexion.

 

Waste Not, Want Not
I recently created a new e-mail sig for myself:

Killing deer to eradicate Borrelia burgdorferi is comparable to killing humans to eradicate E. coli.

Not only are deer NOT the primary vectors of the ticks infected with Bb, the organism that causes Lyme disease, and the gang of other parasites living in the same ticks (Babesia, Bartonella, and Ehrlichia), but the more tick hosts you remove from the environment, the more those ticks are going to feed on pet dogs, cats, and humans.

True, this might be the ramblings of a brain gone bad on Borrelia and Babesia, so don't take my word for it. Read: The ecology of infectious disease: Effects of host diversity and community composition on Lyme disease risk, Kathleen LoGiudice, et al. Proceedings of the National Academy of Sciences, January 21, 2003, 100(2):567-571

 

Passive Advocacy
For your friends and family--and all the doctors and public health officials who are still blind (at this point, it has to be wilfully so), pass around this article published in the Huffington Post: Lyme Disease--Where is House When You Need Him?. Since the URL to this article is so long, I've created this permanent short URL: http://tinyurl.com/czdxku

 

Glossary for this and other TBD Sites
The TBD Glossary will pop-up as a new browser page, so you can leave it open as you read through this site and the articles linked to it.

 

A Note To Keep In Mind...
As you read many of the journal abstracts and articles linked to this and other good Lyme and TBI sites, keep in mind that many of them date back into the 1980s and document the persistence and hardiness of the organisms, withstanding the attacks of both the host immune system and antibiotics, and how they mutate and otherwise protect themselves, leading to chronic and often latent infection. One is left wondering how is it that so many physicians and public health officials around the world continue to ignore and deny what is right in front of them...

Index to Sections:

Other Issues in Lyme Finding Lyme-Knowledgeable Physicians

 

DIAGNOSIS
This is evolving as both testing becomes more reliable, more case histories and information on patient responses to various treatment protocols is compiled and compared, and better information on co-infections, etc., are found and disseminated. Many within the Lyme disease medical and patient community recommend the following, both to learn more about the disease as well as current information on treatment.

Note that there are other organisms besides Borrelia that live in ticks and can be transmitted to humans through bites, causing other tick-borne illnesses (TBI). The most common ones known to date (new ones continue to be identified as time goes on) include Babesia (babesiosis), Erhlichia (erhlichiosis) and Bartonella (bartonellosis). The symptoms of other TBI often overlap those of Lyme and, like Lyme, are just as difficult, if not more so, to diagnose and treat.

When to Suspect Lyme Disease

Late and Chronic Lyme Disease: Symptom Overlap with CFS & FM

International Lyme & Associated Diseases Society (ILADS)

Lyme.Net's Lyme Library

The Interface of Lyme Disease with CFS and FM: Diagnostic and Treatment Issues (Donta)

Master Symptom List for CFS/FM/CMP/Lyme - Kaplan

Clinical Aspects of Lyme Disease: Dermatologic, Cardiac, GI, and Gestational

Short Symptom List: Borrelia, Babesia, Bartonella, Ehrlichia (excerpted from Burrascano)


Burrascano: Treating Chronic Lyme Disease Presentation, April 2004

Jemsek: Lyme Disease in the Carolinas (worth reading even if you live outside the Carolinas)

Clinical implications of delayed growth of the Lyme borreliosis spirochete, Borrelia burgdorferi.

The Consequence of Underdiagnosing and Undertreating Lyme Disease: The Lyme Disease Surveillance Database Study

Everyday Observations of Lyme, Biotoxins and Inflammation: Signs Commonly Missed

A Plague of Ignorance Regarding the Ignorance of a Plague

 

Important Articles for Patients, Families, and PhysiciansNew articles are marked with the Ixodes tick.
The following articles can be ordered from the publisher (more expensive) or through Loansome Doc.
(Find out about Regional Health Libraries)

The Treatment of Lyme Disease: a Medicolegal Assessment (Johnson/Stricker)
Ex. Rev. Anti-Infect. Ther. 2(4),533-557 (2004)

Evidence-Based Treatment Guidelines for the Management of Lyme Disease
Expert Rev. Anti-infect. Ther. 2(1), Suppl. (2004)

Advanced Topics in Lyme Disease: Diagnostic Hints & Treatment Guidelines
Joseph Burrascano MD, 16th Edition, 2008

Controversies in Diagnosis and Treatment
Jemsek Clinic Editorial

Generalizability in Two Clinical Trials of Lyme Disease
Daniel Cameron MD

Everyday Observations of Lyme, Biotoxins and Inflammation: Signs Commonly Missed
James L. Schaller MD

What You Need To Know About ILADS & Lyme Disease (PDF booklet)

What Psychiatrists Should Know about Lyme Disease (PDF booklet)

ILADS Demands Retraction of New IDSA Guidelines for Treatment of Lyme Disease

LYME DISEASE IN CALIFORNIA (University of California Integrated Pest Management)

 

TESTING
I strongly recommend reading the books discussed in my article, Something Bugging You? It will become very clear why accurate testing for Lyme (and for a lot of other parasitic diseases) is so hit-or-miss, why reputable labs nonetheless advise their patients that there is a high probability that the patient who is indeed infected may well get a false negative. Borrelia burgdorferi (Bb), like other tick-borne organisms, does not have a single, static appearance and/or chemical signature. It not only changes throughout its life cycle, it has a bunch of genes that seem to do nothing but randomly alter its outer surface proteins (called OSP) so as to evade the immune system's fighters - and not coincidentally evade recognition on tests.

There are 300+ known strains of Bb around the world, and half dozen known types. When you add the number of strains + types + hundreds of different shifting OSP combinations + the "regular" forms + L-forms (even more shapes and forms that each Bb can adopt throughout its life), there is as yet no existing test that can look for all of these at one time. Or 6 times. Or however many times. So, one may meet all the clinical criteria for Lyme yet keep coming up with negative test results. The test alone cannot be used to determine whether or not the patient has Lyme.

Testing for Lyme is like looking for a person in a crowd, using a photograph that was taken 30 years ago. The face today may be framed by different color hair, different features due to plastic surgery, more or less weight, glasses or color-altering contacts, etc. The skin may even be a different color. Even if you know for sure that the person you are seeking is in a specific crowd of people, the changes intentionally made and that time has wrought can make it difficult if not impossible to find the person the first, second, third, etc., time you look at each face in that crowd. Face-recognition software may help you narrow down the possibilities, but it won't necessarily come up with only that person.

To further complicate the search for that person, try doing it in the dark. Because Borrelia doesn't stay long in the blood stream nor make a frequent appearance in waste products, blood and urine tests are largely ineffective in finding the organism. Borrelia quickly disseminates into body tissues, as graphically described in Tom Grier's Motile Menace article. Since the organisms, no longer than the breadth of a human hair, are so widely dispersed, one would end up looking rather like a piece of Swiss cheese if subjected to sufficient tissue biospies in the effort to find Borrelia throughout the body--and brain.

Ticks and mosquitoes can be carrying hundreds of different types of parasites. When they bite us to feed, many of those parasite species enter our bodies, too. That's why people with bug-borne parasites frequently end up with more than one disease (Lyme + babesiosis, for example, or Lyme + ehrlichiosis). In the case of tick bites (at least in the U.S.), that is why these Ehrlichia and Babesia are generally tested for at the same time as testing is being done for Lyme: Ehrlichia and Babesia are found in the same areas and same hosts (and same arthropods) as Bb. Some of the incoming parasites are successfully conquered shortly after entering our skin or blood stream; others succumb to macrophages or antibodies made to attack them. Those parasites who escape may settle down to a quiet, restrained life, invoking no illness or adverse changes that we detect, and may remain that way for years before acting up, or forever. Some make us sick sooner rather than later, with some people getting sicker than others.

Just in case you thought this was going to be easy...

TESTING LABS
For testing, IGeneX and MDL labs are highly recommended by knowledgeable Lyme patients and physicians. IGeneX is the lab most doctors I know use and recommend to other physicians and patients. You will find info on the IGeneX site about their tests, lab order forms describing what is needed, etc.

In late 2005, the New York Times knowingly published incorrect information about the accuracy of IGeneX's tests, including saying it had failed certification. In fact, IGeneX was in the midst of a routine recertification, something that all labs are required to undergo, and, as always, IGeneX passed, both in New York and California, the two most difficult states in which to get certified. If your doctor or family tells you IGeneX is 'bad', print out the their current CLIA certification and tell them to go do the research that the New York Times refused to do--and ignored when the certification was sent to them.

Best tests:
Western Blot; PCR (blood, urine, cerebral spinal fluid); urine antigen; DOT assay.

Worthless Tests:
ELISA and EIA. Many county health and other labs will only do an ELISA and refuse to do any other testing if the ELISA is negative. Since the ELISA is practically always negative, even when the WB, PCR, etc., tests are positive, patients whose doctors only use the ELISA who don't fight for the WB and other testing are not getting diagnosed properly. Patients not diagnosed properly are most likely to end up with chronic Lyme which is much more difficult to treat, taking much longer and far more drugs to treat, and may never be fully resolved.

In other words, by not testing properly and jumping on immediate treatment of the length of time and doses needed to stop Borrelia in its tracks, the public health departments, AMA, CDC, and the doctors and insurance companies that follow their recommendations, have doomed these patients to a life of permanently impaired health, most of whom will be permanently disabled as a result.

Related Articles
Reasons For Seronegative [=False Negative] Lyme Test Results

Testing for Borreliosis
(Charles Crist MD)

Lyme Antibody Serology
(ELISA)
Detection of Borrelia burgdorferi Antigen in Urine from Patients with Lyme Borreliosis


Lyme Disease Western Blot


Lyme Disease: Testing the Waters

Two-Year Evaluation of Borrelia burgdorferi Culture and Supplemental Tests for Definitive Diagnosis of Lyme Disease

Relevance and Biopsying the Erythema migrans
Despite the fact that the majority of "how to diagnose Lyme Disease" place emphasis on the appearance of erythema migrans (the "bull's-eye" rash), less than 50% of people bitten by a tick or nymph actually get such a rash, or it is so small or is in a location impossible for the bitten person to see. Despite this reality, many doctors will incorrectly dismiss Lyme as a possibility, and will refuse to test appropriately or prophyllactically treat with effective amounts of antibiotics patients who report no rash.

if you do have such a rash, get your doctor to have a biopsy and culture done: even if you are seronegative at that time (have negative results on the ELISA, EIA, and WB), the Borrelia spirochetes can be found in the biopsied skin.

 

Finding Lyme-Knowledgeable Physicians
Finding doctors who are adept at making a clinical diagnosis of any of the tickborne infections instead of what the doc-duhs do (treat the tickborne infection lab test result instead of assessing the patient's history, symptoms and signs, using the lab test as a tool in the greater diagnostic toolbox) can be difficult. The following organizations have resoures that can help locate doctors knowledgeable about treating Borrelia, Babesia, Bartonella, Ehrlichia, and the multi-systemic problems they all cause.

International Lyme and Associated Diseases Society (ILADS)

LymeDisease.org (formerly CALDA - California Lyme Disease Association)

Lyme Disease Association, Inc. (National)

Lymenet.org
(Eastern U.S.)

 

 

TREATMENT PROTOCOLS
NIH Study: Intensive Treatment Helps People With Chronic Lyme Disease

Diagnostic Hints & Treatment Guidelines, Fifteeth Edition (2005)  (2008 Revision) (PDFs)

The Klinghardt Neurotoxin Elimination Protocol

The Integrative Treatment of Lyme Disease, Steven J. Bock MD

Herxheimer Reaction (Herx)

ILADS Guidelines for the Management of Lyme Disease (Nov 2006) (PDF)

New [Evidence-Based] Treatment Guidelines for Lyme Disease (ILADS)

Order the Evidence-based guidelines tor the managment of Lyme Disease journal article

Lyme Disease and the Limits of Medicine

 

Naturopathic/Non-Prescription Drug Treatment Protocols
While some naturopathic antimicrobials do seem to help reduce the number of organisms and so gain patients some degree of symptom alleviation, they have yet to be as effective as long-term antibiotics in quashing the parasites.

There can also be some unintended consequences: While on IV Colloidal Silver, after my initial herxing, I started feeling better, then great, ...until one day, I got slammed with Babesia symptoms. Apparently, the artemisinin I'd been on the year before, which had reduced my Babesia microti down to "non-infective" levels, did not eradicate it. Some other organism or two or three were helping my body keep down the Babesia population remaining after I went off the artemisin, beneficial organisms that were killed off by the silver, resulting in a major Babesia population explosion. Fortunately, my physician had just returned from a Lyme conference, wherein he learned that Babesia is far more prevalent in the Lyme patient population (40% or more), and is far more difficult to get rid of, has a cyst form (similar to Borrelia) requiring the addition of a third antibiotic, and the tests are, like tests for Borrelia burgdorferi, returning high rates of false negatives because acute illness happens at ratios far less than the test sensitivity levels. [Note that there are tests for only two of the 20+ known Babesia species, so people infected with the other species will never test positive, no matter how sick they are or how many antibiodies they have, unless they use IGeneX's non-antibody based tests.)

Samento (TOA-Free Cat's Claw [Uncaria tomentosa]) & Lyme Disease:
Study shows Samento to be effective in treating Lyme Borreliosis

How Samento May Eliminate the Pathogen

(More at NutraNews...)

I also took the liquid Samento, working up from 1 drop once a day to 5 drops three times a day. During that time, I experienced greatly elevated overall inflammation. On my doctor's recommendation, I started taking a curcumoid (derived from tumeric) product (Pure Encapsulation's Curcumin 97), one capsule 3 times a day. On the sixth day, someone asked me how the inflammation was - and I realized that the Samento-induced inflammation was completely gone. The bottom line, though, is that I do best on long-term high dose antibiotics rather than with the altmed/homeopathic treatments.

New Uses for Old Drugs
Cozaar (ACE inhibitors)
Minocin + Benicar

BORRELIA RESISTANT TO TREATMENT
Fibroblasts protect the Lyme disease spirochete, B. burgdorferi, from ceftriaxone in vitro.

Eucaryotic cells protect B. burgdorferi from the action of penicillin and ceftriaxone but not from the action of doxycycline and erythromycin.


In vitro susceptibility testing of four antibiotics against B. burgdorferi: a comparison of results for the three genospecies B. afzelii, B. garinii, and B. burgdorferi sensu stricto.


Kill kinetics of B. burgdorferi and bacterial findings in relation to the treatment of Lyme borreliosis.

 

PERSISTENCE OF BORRELIA AND OTHER TBI
Keep in mind that Borrelia and many other organisms cross the blood-brain barrier (BBB) where they are safe from drugs that cannot cross the BBB...and if the organisms remain in the brain, they can still cause illness, especially neurological and motor symptoms that are too frequently misdiagnosed as something else, especially if the doctors rely on the ELISA and CDC WB epidemiological criteria for diagnosing Bb.

The fate of B. burgdorferi, the agent for Lyme disease, in mouse macrophages. Destruction, survival, recovery.

In vivo
activities of ceftriaxone and vancomycin against Borrelia spp. in the mouse brain and other sites.


Effects of penicillin, ceftriaxone, and doxycycline on morphology of B. burgdorferi.


Clinical implications of delayed growth of the Lyme borreliosis spirochete, B. burgdorferi.


Immune evasion by tickborne and host-adapted
B. burgdorferi.

Complement evasion by the Lyme disease spirochete B. burgdorferi grown in host-derived tissue co-cultures: role of fibronectin in complement-resistance
.

 

ARTICLES
Along with the articles below, more can be found here.

International Lyme & Associated Diseases Society (ILADS) Responds to Poor Research Supported by AMA/CDC
Re: GP Wormser, et al. Duration of Antibiotic Therapy for Early Lyme Disease

Lymenet.org's Response to "Overdiagnosis of Lyme"


Re: Klempner et al.: Evaluation of Antibiotic Treatment in Patients with Persistent Symptoms of Lyme Disease

 

The Emerging Science of Lyme

Epidemic Spread of Lyme Borreliosis, Northeastern United States

Journal of Spirochetal & Tick-Borne Diseases

The spirochetal etiology of Lyme disease
. NEJM 1983

The bdr Gene Families of the Lyme Disease and Relapsing Fever Spirochetes


Unusual presentations of neuroborreliosis (Lyme disease) in childhood


Longterm Decrease in the CD57 Lymphocyte Subset in Lyme


Decrease in CD57 Lymphocyte in Patients with Chronic Lyme Disease


Neuroborreliosis during relapsing fever

Central and peripheral nervous system infection, immunity, and inflammation in the NHP model of Lyme borreliosis


Lyme Disease Vector Ecology


Lizards Slow Spread of Lyme In West


Association between different clinical manifestations of Lyme disease and different species of Borrelia burgdorferi sensu lato.


A Tale of Two Ticks


Antigenic Variation in Vector-Borne Pathogens


The Complexity of Vector-borne Spirochetes (Borrelia spp)


"Lyme disease": ancient engine of an unrecognized borreliosis pandemic?


A Tick By Any Other Name...


Huge Rise in Tick-Borne Diseases

Suburban Sprawl Could Inrease Lyme Disease Infections


Established and reported distribution of the Lyme disease vectors Ixodes scapularis (I. dammini) and Ixodes pacificus, by county, United States, 1907-1996

 

Emerging Testing and Diagnosis
Isolation of Borrelia burgdorferi from the blood of seven patients with Lyme disease.

Disease-Specific Diagnosis Of Coinfecting Tickborne Zoonoses

 

Other Interesting Articles
Stricker NK Panel

Clinical Practice: Living with Lyme Disease


Economic Impact of Lyme Disease

Lyme Rash Photo Gallery
(Lyme.org)

Borrelia
(Kenyon College)


Fighting Back: How B burgdorferi Persists


Lyme Disease: The Unknown Epidemic


California DHS Lyme Disease Advisory Committee November 2002 Minutes

 

Post-Treatment Sequelae
Audiologic manifestations of patients with post-treatment Lyme disease syndrome

 

THE POLITICS OF LYME
Bug War

Challenging Quackwatch's Position on Lyme Disease

Kaiser HMO and Lyme Disease


Klempner et al's Study on Lyme & Abx
, and two of the many rebuttals the NEJM didn
't print: Harris, Stricker

The Nature of the Phylum


Lyme Disease: The Unknown Epidemic


Lyme Disease Controversies


The Office of Professional Medical Conduct-Lyme Controversy ( Why A Lot Of Doctors Who Really Do Know What It Takes To Treat Lyme Won't Touch Lymies With A Ten Foot Pole)

2004 CA Senate HHS Hearing on Diagnosing, Reporting & Treating Lyme
(includes speakers such as Raphael Stricker MD and noted author Amy Tan) Requires RealPlayer

 

Other Issues in Lyme
Increased arthritis severity in mice coinfected with Borrelia burgdorferi and Babesia microti

Got TMJ? Got Tooth Ache/Pain? It Might Be Lyme!


Hypercoagulation and Borreliosis (Lyme disease)


Sexual Transmission


Breast Milk Transmission


Other Transmission


Other Possible Vectors

Endometriosis & Lyme: Is there a connection?

 

...Mainstream Media
Hidden Plague. Forget about SARS. Lyme disease is spreading steadily

 

...Lyme's Spirochetal Cousin, Syphilis
New Test Raises Patients Hopes and Scientists' Doubts

Syphilis, Lyme disease & AIDS: Resurgence of "the great imitator"?

A Call for the Re-Evaluation of the AIDS Dogma (a good layman's discussion of the above paper)

The X Factor

 

...Co-Infections
It is critical that any concurrent co-infections be identified, and successfully treated before beginning treatment for Borrelia
Those Other TBD: Human Ehrlichioses and Rocky Mountain Spotted Fever

Babesiosis: A Re-Emerging Disease


Coinfection With Babesia microti and Borrelia burgdorferi

 

Video
Lyme Disease on Rise in Bay Area. KTVU News, San Francisco, 6/2003 video clip
Among those interviewed is noted Lyme doctor Rafael Stricker MD, who theorizes, based on the number of spouses/partners and children of Lyme patients who have mild infections themselves, that Borrelia burgdorferi, a relative of the spirochete that causes syphilis, may be transmitted sexually, in utero, and in breast milk.

Blood Supply May Be Source of Lyme Disease Infection, KTVU News, San Francisco, 7/2004 video clip
Will this motivate the public health agencies to develop better testing for Borrelia and common co-infections, and more physicians take LD and other TBI into consideration when diagnosing patients? It could happen. Really.

Lyme Disease Panel Discussion (August 14, 2004)
This is the full length video, available for purchase from The Carousel Network. The LDPD, hosted by The Carousel Network, brought together physicians Wayne Anderson ND PA and Marylynn Barkeley PhD MD, Lyme activist/educator Phyllis Mervine MA Ed., and vector ecologist Ron Keith PhD for a 2+ hour discussion on Lyme disease. For information on purchasing the video, please go to The Carousel Network's Lyme Resources site.

 

Under Our Skin
This award-winning documentary on Lyme Disease made the rounds of film festivals before being shown on PBS stations around the country. If there isn't a screening in your area, and it isn't on your PBS station's upcoming schedule, contact the producers about arranging a screening in your area.

 

LYME DISEASE ORGANIZATION SITES
LymeDisease,org (formerly known as CALDA, this organization publishes Lyme Times)
If you do nothing else for yourself, join LD.org to start your subscription to Lyme Times. Then, order yourself a copy of eachs of the following back issues, if they are still available:

   Summer 2004, Issue #37/38: The Patient Issue
   Winter 2004-5, Issue #39/40: The Insurance Issue

In fact, order several copies of each, and help educate your family, friends, support groups, and physicians.

Canadian Lyme Disease Foundation

Lyme Disease Association, Inc. (National)

Lyme Disease Foundation, Inc.


Lymenet.org
(Eastern U.S.)

Lyme Disease Information & Support
(North Shore MA)

CDC's Lyme Information
(take with a grain of salt larger than a fully engorged tick)

Docguide.com
> Search term: Lyme

The Lyme Disease Digital Library (LymeBrary)

Lyme Links

Lymeinfo.net


Lyme/TBI Info & Support Groups


Debate Rages over Lyme Disease Vaccine

 

EXCELLENT PATIENT SITES
ActionLyme

Art Doherty's Lyme Links


Bell's Palsy / Lyme Disease

Matthew Goss: Lyme Disease

WildCondor's Story and Links

 

Informative Physician Sites
The Human Side Of Lyme

Mold Warriors (Shoemaker & Schaller)

Biotoxin Illness (Ritchie Shoemaker MD)

James L. Schaller MD

TurnTheCorner.Org

 

 

LYME & RELATED COINFECTIONS EMAIL LISTS & FORUMS

CaliforniaLyme (for Californians with borreliosis)

EuroLyme (for Europeans with borreliosis)

LymeNet


LymeWarriors - support for teens with Lyme disease

 

Recommended Reading
Books

LymeTimes


Secrets of the Woods: Acorns, Biodiversity, and Lyme Disease


Psychosocial Issues in Lyme Disease


LymeSig: Online issues of MENSA's Lyme Special Interest Group's newsletter


World of Wonder in Lyme Bacterium

 

Tick Acquisition
Avoid Logs to Avoid Ticks

How to Remove Ticks
(69 K pdf)

A Tick By Any Other Name


Huge Rise in Tick Diseases from Rise in Tick Numbers


Hate Ticks? Save Deer.

Lyme Disease in California: Integrated Pest Management for Home Gardeners and Landscape Professionals

 

Important To Note:
The American Lyme Disease Foundation is considered, by patients and Lyme doctors, a disinformation site, shills for the HMOs and those who persist in denying the existence and severity of the disease.

You'd think they would learn from the CDC's mistakes with AIDS, CFS, and WNV, but I guess some people (and organizations) have to do it the hard way... Unfortunately, it's patients, not the federal agencies, who suffer. You will need to take the CDC and state's department of health tickborne diseases people with a grain of salt, as the CDC/NIH has historically done lousy job developing tests, assessing test results, and believing patients are really sick.

If you still aren't sure what I'm talking about, please read Osler's Web (Hillary Johnson), and And the Band Played On: Politics, People, and the AIDS Epidemic, by Randy Shilts. In the not too near future, someone will write similar books on Lyme, West Nile Virus, and anthrax.

You should also understand that, while the FDA is nominally in charge of the nation's blood and organ banks, the FDA takes their lead from the CDC in terms of screening for diseases that can be transmitted through whole blood, organs, and blood products.

See also Non-Tick Transmission of Lyme and Other Tick-Borne Infections.

 




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