What is this website all about?
Introduction to Chronic Lyme Disease
Most people know that Lyme Disease is a dangerous tick-borne infection common on the Eastern Seaboard of the United States. However, there is significant controversy surrounding the question of whether or not Lyme Disease can become chronic, treatment-resistant, and persistent. In this article we will examine the controversy, current medical research, and attempt to answer the question.1
What is Lyme Disease?
Lyme Disease is a bacterial infection caused by Borrelia
Burgdorferi, an elongated, spiral-shaped bacteria transmitted to humans through the bite of a tick. Known as spirochetes, these bacteria are unusual, not well studied, elusive and difficult to cultivate in the laboratory, and capable of advanced survival activities more commonly found in larger, more intelligent
For additional introductory information on Lyme Disease:
BREAKING NEWS: Get alerts on the new book by Dr. Horowitz, entitled Why Can't I Get Better: Solving The Mystery of Lyme and Chronic Illness!
Chronic Lyme Disease - Myth or Reality?
There is a debate currently raging in the medical community which centers around the question of whether the chronic form of Lyme Disease is a real medical condition caused by a dangerous, insidious bacterial infection or a fictional disease resulting from psychological factors such as paranoia or hypochondria.
Currently, available research2,3,4 and medical experience indicates that chronic Lyme Disease is in fact a real condition caused by the persistent presence of Lyme Disease bacteria in the body. Chronic Lyme Disease can occur even after antibiotic therapy has been administered. This is possible due to the hardy, survival-oriented, and resistant nature of Lyme Disease bacteria. Unfortunately, the chronic form of Lyme Disease is much more difficult to cure, and often involves much more more severe symptoms, than acute Lyme Disease. Chronic Lyme Disease sometimes even causes complete debilitation.
Furthermore, recent statistics show that the illness is not only real, but very prevalent and much more common among the American public than most people realize. In fact, the Townsend Letter for Doctors and Patients, a highly respected alternative health journal, indicates that there are more than 200,000 new cases of Lyme Disease per year in the United States alone,5 and that approximately 20% of these cases progress into chronic Lyme Disease―even after antibiotic treatment is administered.
Let the math tell the story: 200,000 new Lyme Disease cases per year multiplied by 20% results in 40,000 cases of chronic Lyme Disease per year! Given that most people with chronic Lyme Disease are not successfully diagnosed and treated, the total number of people in the United States with chronic Lyme Disease continues to grow. How many people currently have chronic Lyme Disease? No one really knows, but the number may be quite high―500,000? 1 million? 3 million?
But the debate continues. A new development that has led to even higher stakes in the debate was the recent release of new Lyme Disease treatment guidelines by the Infectious Disease Society of America (IDSA), an organization generally recognized as the authority on infectious disease. These new guidelines have been accepted and implemented by the Centers for Disease Control (CDC). Here is an excerpt from the new guidelines:
These new guidelines have been cause for outrage among Lyme Disease patients, practitioners, and researchers. In fact, the State of Connecticut Attorney General, Richard Blumenthal, has even launched an official investigation into whether the IDSA has violated antitrust laws in setting these
guidelines. This investigation may lead to a lawsuit. According to Richard
Blumenthal, as quoted in the November 17, 2006 issue of the Hartford Courant, “the new guidelines were set by a panel that essentially locked out competing points of view."
The current state of affairs with insurance companies does not help the situation—many companies have followed suit behind the regulatory authorities and now deny coverage to chronic Lyme sufferers. Richard Blumenthal notes that “one of the common complaints we've received relates to denials of insurance coverage … it’s a very chilling economic effect."
Lately, the situation has deteriorated considerably. One of the nation's leading pediatric Lyme specialists, Dr. Charles Ray Jones, M.D., has been disciplined and harrased by state medical boards to the point that he may even lose his license. Dr. Joseph Jemsek, another prominent Lyme expert, is also experiencing the heat. Most people do not realize that while these are isolated cases of physician harassment, they will have a wide-scale impact on hundreds of LLMDs across the country, possibly even rendering treatment of chronic Lyme Disease illegal. (To learn more about Lyme Disease in children, or pediatric Lyme Disease, visit http://ticktips4kids.com/).
For more science on the chronic form of Lyme Disease, we suggest you read Bryan Rosner's new 2008 Lyme Disease Annual Report, an excerpt from which can be found here: Chronic Lyme Disease Science. You won't want to miss Ken Singleton's New Book entitled The Lyme Disease Solution.
Is Lyme Disease a worldwide disorder, or only present in the United States? Find out in this excellent article: "Lyme Disease cases in Europe, Germany, Canada, UK (United Kingdom), and abroad"
Columbia University Lyme Disease Research by Brian Fallon, M.D.
Fortunately, to counteract the stigma that chronic Lyme Disease is not a real medical condition, there is currently credible, bona fide research taking place at Columbia University, which has established a Chronic Lyme Disease Research Program under the supervision of Dr. Brian Fallon, M.D. This research program ultimately aims to prove that chronic Lyme Disease is a real condition, and further, to explore treatment options.
How is Chronic Lyme Disease Treated?
Sadly, because most doctors do not recognize chronic Lyme Disease as a real medical condition, treatment is often not given at all. This only contributes to increased suffering. Doctors who recognize chronic Lyme Disease as a real condition and who are willing to treat it are known as Lyme Literate Medical Doctors (LLMDs). These doctors are trained in and qualified to treat chronic Lyme Disease. You can get a free referral to an LLMD at www.lymenet.org or www.lymediseaseassociation.org.
Early-stage, acute Lyme Disease is treated with a 2-4 week course of antibiotics.6 Similarly, chronic Lyme Disease is also treated with antibiotics, however, duration of therapy with chronic disease is often much longer, such as 2-12 months. LLMDs most often prescribe a combination of intravenous and oral antibiotics to treat chronic Lyme Disease.7
In many cases, high-dose, extended antibiotic therapy as applied by an LLMD cures chronic Lyme Disease after shorter courses of antibiotics have failed. However, in some cases, it does not. The Lyme Disease infection is so insidious and resistant that, stated quite simply, antibiotics can be hit or miss.
When antibiotics fail, various alternative therapies have been found to help people with chronic Lyme Disease. A new Lyme Disease book, entitled The Top 10 Lyme Disease Treatments, describes ten breakthrough Lyme Disease treatments that chronic Lyme Disease sufferers have found helpful. You can learn more about the book at www.defeatlyme.com.
Lets take a look at several alternative treatments for chronic Lyme Disease which can be utilized in the event that antibiotics do not provide satisfactory treatment results. Note: The below discussion will present only brief introductions to each therapy, not complete descriptions. References will be given to find more extensive information.
The Marshall Protocol - a New Treatment
The Marshall Protocol addresses a part of the Lyme disease complex that no other treatment, protocol, diet, or supplement can even come close to touching: infection with cell-wall-deficient bacteria.
The Marshall Protocol is based on discoveries about Vitamin D and certain hormones that become dysregulated in chronic Lyme Disease. To find out more about the protocol, visit:
The Salt / Vitamin C Protocol
This protocol first became public in 2004. The protocol involves consuming approximately 10 grams of salt and 10 grams of vitamin C per day. Many Lyme Disease sufferers have noticed benefit from the protocol. To learn more, visit:
Rife Machine Treatment
Despite the strangeness of this therapy, it is among the most helpful for chronic Lyme Disease, according to many Lyme Disease sufferers. It involves using electromagnetic frequencies to disable Lyme Disease bacteria. Learn more by visiting:
Not convinced that rife machine therapy is for real? Watch author Bryan Rosner talk about various rife-related topics in the below sample videos. You can scroll through the videos and watch as many as you want. To see additional videos of Bryan discussing Lyme-related topics, visit his Lyme Disease Video Blog.
Videos: Author Bryan
Herbs and Natural Antibiotics
Many Lyme sufferers choose to use natural / herbal antibiotics to combat chronic Lyme Disease in order to avoid the side effects of toxic pharmaceutical antibiotics. Examples of non-pharmaceutical antibiotics include Samento, Lauricidin, Grapefruit Seed Extract, Colloidal Silver (also referred to as "mild silver protein"), and Mangosteen.
Learn more about which are the best choices.
The Cowden Protocol
Lee Cowden, M.D., of Fort Worth, Texas, has established what has come to be known as one of the leading chronic Lyme treatments of our time. Known as the Cowden Protocol, this series of treatments consists primarily of various herbal extracts, including Cumanda and Samento (see right column of this page for more information on Samento) as well as hyperbaric oxygen treatment, ozone therapy, and other interventions. To learn more, we suggest you pick up the April, 2007 issue of Townsend Letter For Doctors and Patients, a well-known and respected alternative health periodical which examined chronic Lyme Disease in the April, 2007 issue.
Homeopathic remedies hold some value in treating chronic Lyme Disease. Ledum is one type of homeopathic preparation commonly used. Likely more effective than Ledum is another type of remedy, known as a "series remedy." Deseret Biologicals is a homeopathic manufacturing company that is rapidly becoming well known throughout the United States for their Borrelia series remedy. Deseret's website says this about the Borrelia series remedy:
To learn more about treating Lyme Disease with homeopathy, see these resources:
Hyperbaric Oxygen Chamber (HBOT)
Hyperbaric oxygen chambers (HBOT or HBOC, for short) are medical devices which are conventionally used for treating health conditions such as strokes, cerebral palsy, brain injuries, cyanide poisoning, burns, and the "Bends" (decompression sickness).
Also sometimes referred to as hyperbaric oxygen tanks, these devices have proven somewhat successful in treating Lyme Disease. Researchers believe the benefit is a result of the fact that Lyme Disease bacteria are damaged or killed in high-oxygen environments, such as that created by HBOC.
Above is pictured a hyperbaric oxygen chamber, inside which you can see a patient receiving a treatment (treatments are sometimes referred to as "dives," due to the changing pressure used to send oxygen deep into the body). Outside the tank you can see the operator, who supervises the treatment and is responsible for patient safety and comfort. A treatment can take between 30 and 90 minutes, and is often uncomfortable because of the small amount of space in the chamber and the fact that use of a restroom is not possible during treatment.
Hyperbaric oxygen chamber clinics are located throughout the United States, and a prescription is required for the treatment. Some researchers (such as Bryan Rosner) believe that this type of therapy may drive Lyme Disease bacteria deeper into the body, but this opinion is controversial.
Various Lyme Disease patients have chronicled their experiences with this therapy. You can read the story of L. James Johnson and Wild Condor, both Lyme patients who have experience with HBOC. For more information, see this HBOT Today Lyme Article and a similar article on the website of James Schaller, M.D.
The following are a selection of hyperbaric treatment facilities:
Many other supportive therapies also help chronic Lyme Disease, including detoxification (with saunas, exercise, herbs, etc.), healthy diet, supplementation, meditation, yoga, acupuncture, Chinese medicine / Chinese herbs, IV vitamin C, magnesium supplementation, Co enzyme Q10, lithium orotate, just to name a few.
One Lyme Disease sufferer who maintains an excellent Lyme Disease resource site offers a good overview of many available therapies. See http://www.betterhealthguy.com.
The treatments you end up using should be determined by a consultation with a trusted Lyme Literate Medical Doctor, and also be based on your personal, individual positive / negative response to therapy.
Still Not Properly Diagnosed?
If you suspect that you have Lyme Disease, but have been unable to receive the diagnosis, the below tips will assist you. These are general tips and information about diagnosing Lyme Disease.
These tips are courtesy of:
* Positive serologic testing is NOT necessary for a Lyme disease diagnosis!
FDA Medical Bulletin * Summer 1999 * Final
Issue/ Lyme Disease Test Kits: Potential for Misdiagnosis
Lyme Disease Diagnosis - From the CDC
Division of Vector-Borne Infectious Diseases (DVBI): "The diagnosis
of Lyme disease is based primarily on clinical findings, and it is often
appropriate to treat patients with early disease solely on the basis of
objective signs and a known exposure. Serologic testing may, however,
provide valuable supportive diagnostic information in patients with
endemic exposure and objective clinical findings that suggest later
stage disseminated Lyme disease."
The New Great Imitator: Lyme Disease (LD)
"Health is a state of balance. Because humans and microbes are often competitors, interactive co-evolution has resulted in multiple and varied defense mechanisms on the part of both. The body must juggle and perform delicate balancing acts to maintain adaptive successes in spite of constantly changing life situations.
Lyme Disease (LD), Fibromyalgia (FMS), Chronic Fatigue Syndrome (CFS), Gulf War Syndrome (CWS), and many similar chronic conditions affect multiple body systems often accompanied by extreme morbidity. Laboratory diagnostic methods presently in use are often undependable. "
To get serologic testing done through one of these most reliable labs listed below, follow these steps:
Talk to your doctor, make arrangements for the doctor’s office to
accept a kit from a laboratory.
Call the laboratory (number below) request a kit for a Lyme panel.
Some labs will send it to you directly, others want a doctor's office
to receive it.
Some labs will send it to you directly, others want a doctor's office to receive it.
3. When the kit arrives pick it up from the doctor’s office.
Have your doctor fill out the test order form that comes in the kit.
Be sure the doctor includes the following tests:
Be sure the doctor includes the following tests:
a. Lyme Western Blot. IgG, IgM
b. Lyme PCR
c. Lyme ELISA
d. Babesia PCR
e. Ehrlichia HGE Western Blot
f. Ehrlichia HME Western Blot
g. If at all possible, add testing for Bartonella, Tularemia, Mycoplasma, Brucella and Chlamydia
Go to a laboratory (hospital, every hospital has one, or private) have
them draw your blood and spin it down.
Take the kit AND the spun tubes of blood home and call FedEx ( the
phone number, prepaid mailer and packaging are enclosed with your kit)
to pick up your package to deliver it to the out of state lab.
RELIABLE Laboratories for testing:
(Get your kit from one of these laboratories)
Bowen Research and Training, Tarpon Springs, FL, USA
Laboratory for the diagnosis of Lyme disease
University Medical Center
Level 3 Room 701
State University of New York
Stony Brook, NY 11794-7305
MDL Medical Diagnostic Laboratories East Gate Business Center 133 Gaither Drive, Suite C MT. Laurel, NJ (877) 269-0090 toll-free http://www.mdlab.com/
Florida Research, Inc. is replacing the laboratory operations of Bowen
Research and Training Institute, Inc. Bowen Research and Training
Institute, Inc. will continue providing Bowen Therapy as a separate
and distinct corporation.
Cytometer can count the number of organisms in 100,000 events in 2
minutes and 50,000 in 1 minute. To visually count the organisms in
100,000 events or 50,000 events using a microscope would be almost an
impossibility. The Flow Cytometer counts the number of all events
passing through the aperture and enumerates the organisms that react
with the antibody. The test result will be reported as a percent of
the counted events.
Lyme Disease: Testing the Waters; As anyone who studies Lyme disease
knows all too well, the difficulty is often not how to treat the
disease, but how to arrive at the diagnosis. Several speakers examined
the current state of diagnostic testing, highlighting what is
currently available, what may soon be available, and in 1 case, what
might have been available.
We hope that this information on diagnosing Lyme Disease has been helpful. Remember -- Lyme Disease tests are often negative even when you have Lyme Disease! And also remember -- any reasonable physician should be willing to assist you in the above diagnostic process. If your physician refuses, find someone else.
Chronic Lyme Disease is in fact a real medical condition, caused by the persistent presence of Lyme Disease bacteria in the body. It is critical that health care practitioners and patients recognize this fact in order to prevent additional suffering. This article is only intended as an introduction to this topic; not exhaustive treatment of it. For additional information, please visit the recommended Lyme Disease links to your right.
One exciting development in the study and treatment of chronic Lyme Disease is the recent opening of a special medical research facility at Columbia University dedicated specifically to studying chronic Lyme Disease. Read our press release about this facility. The establishment of a chronic Lyme Disease research facility is one indication that this disease is slowly gaining recognition and acknowledgement in the mainstream medical community.
Don't miss Our works in progress page: