EMPIRE STATE LYME DISEASE ASSOCIATION

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and

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Lyme and Tick-

Borne Disease Info

· The Beginning

· Rashes

· Early Detection 

· Testing

· Symptoms

· Additional Symptoms

· Co-infections

· Late stage Infection

· Antibiotics

· Treatment

· Herxheimer Reaction

· Mechanism of Action

· Survival Tactics

· The Bad News 

· Conclusion

· Good News

· Prevention

· Alternative Treatments

· Lyme Disease Politics

· Disclaimer

 

**PREVENTION**

 

Lyme tests are not accurate-2005 John Hopkins study

 

Articles on the Persistence and Virulence of Lyme

by Miklossy, Luft, Barthold,  others

 

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Empire State Lyme en Espaņol

 

Michele Moynihan's Presentation "Lyme Disease: Be Lyme Wise* is a Great Educational Presentation for School Children 

 

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Children

Autism and Lyme Disease

Children

LYME & Pregnancy by John Drulle, MD

 

Misdiagnosis

Alzheimer's and Lyme Disease

 

LYME BORRELIOSIS and MULTIPLE SCLEROSIS

 

Worm Parasites, FILARIASIS Nematodes in ticks?

Nematode Spirochete Farmers

Nematode-Bacteria- Symbiosis

10 Questions For Scientists

 

Heart Disease & Lyme Disease & Lyme Carditis
 

Antibiotic

Resistance

 

ILADS TIPS TO AVOID CHRONIC LYME DISEASE

 

**US Senator Chuck Schumer, NY, on the
Board of Empire State 
Lyme Disease Association
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Other Information: 

 

Revised 6-1-10 b

Lyme Disease - The Beginning:  TOP

Early records of conditions possibly associated with Lyme disease date back to the 1880s and on Long Island, for many years there was talk of "Montauk Knee" and "Long Island Malaria." Lyme disease is named after the Connecticut town of Lyme where it was first recognized in the United States in 1976.  Lyme disease is a bacterial infection caused by a spirochete, a spiral-shaped bacteria called Borrelia burgdorferi (Bb). The bacterium is named after Dr. Willy Burgdorfer who discovered it. TOP

More than 100 strains of Bb have been identified in the United States with 300 strains of the organism have been identified throughout the world. Cases of Lyme disease have been reported in North and South America, Europe, Asia, Africa and Australia and it is one of the fastest growing vector borne diseases.  Both humans and animals can be infected with Lyme disease through the bite of an infected tick. In the United States Lyme infection is usually transmitted by, though not limited to, three species of tick:  TOP  

  The black-legged tick (ixodes scapularis) on the East Coast and in the Midwest (commonly known as the deer tick).                                                   

  The western black-legged tick (ixodes pacificus) in the Western U.S. (also commonly known as the deer tick).

  The lone star tick (amblyomma americanum), was previously located predominantly in the south, but recently, the lone star tick is on the move and is said to be out-competing the other ticks and is now found in many areas of the Northeast. TOP

Larva, Nymph, Adult Male, Adult Female ixodes scapularis

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Late-stage Infection: 

When Lyme disease goes undetected, undiagnosed and untreated for months or years following infection; the bacteria can spread to the nervous system, the heart and other organs, tendons and joints. This late-stage infection can result in a wide variety of physical, emotional, and mental or cognitive symptoms. The late-stage list of symptoms is long and can include arthritis, heart abnormalities, Bell's palsy (paralysis of one or both sides of the face) and severe cognitive or mental dysfunction including memory loss, confusion, psychiatric problems, etc.

Misdiagnosed: Lyme disease is often referred to as the Great Pretender because the symptoms of Lyme disease can so closely mimic the symptoms of other diseases. Although no one knows the exact figures, Lyme patients have been misdiagnosed with many other conditions including chronic fatigue syndrome, fibromyalgia, multiple sclerosis, menopause, depression, Alzheimer's disease, ALS or Lou Gehrig's disease, Parkinson's disease, and others.  Some patients do not receive any definitive diagnosis long after the presentation of symptoms and may even be repeatedly told that they are fine.

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Symptoms: 

Early signs of Lyme disease include flu-like symptoms and in possibly less than 50% of cases, a Lyme rash. The symptoms include muscle aches, joint pain, fatigue, fever and headache.  Symptoms may show up days or weeks and occasionally months after infection.

The Lyme rash is referred to as Erythema migrans or EM. It used to be believed that only a bulls-eye rash at the site of the tick bite indicated Lyme disease. We now know this is not accurate. We know that the rash may not show up at all, or it may appear too light in color to be noticed. The rash can be or may not be shaped like a bulls-eye, it can be smooth or bumpy, it may or may not feel warm, and there can be multiple rashes that appear at the site of the tick bite or elsewhere on the body.

Once the infection becomes established, symptoms of Lyme disease vary but may include pain in muscles and joints, fatigue, swollen glands, fever, upset stomach, headache, forgetfulness, sleep disorders, depression, and sensitivity to light and sound, to name a few.

  TOP

    ·  Tick bite (deer tick or dog tick)

    ·  Rash at bite site and/or at other sites - however, many patients don't remember seeing a rash TOP

        
    hidden under hair  or elsewhere look like a bruise bull's eye multiple rashes  no bull's eye bull's eye
     

    ·  Unexplained fevers, sweats, chills

    ·  Unexplained weight change (loss or gain)

    ·  Fatigue, tiredness

    ·  Unexplained hair loss

    ·  Swollen glands

    ·  Sore throat

    ·  Testicular pain/pelvic pain

    ·  Unexplained menstrual irregularity

    ·  Unexplained milk production (lactation)

    ·  Irritable bladder or bladder dysfunction

    ·  Sexual dysfunction or loss of libido

    ·  Upset stomach

    ·  Change in bowel function (constipation, diarrhea)

    ·  Chest pain or rib soreness

    ·  Shortness of breath, cough, heart palpitations, pulse skips, heart block

    ·  Joint pain or swelling

    ·  Stiffness of the joints, neck, or back

    ·  Muscle pain or cramps

    ·  Memory impairment or loss ("brain fog ")

    ·  Dyslexia and word-finding problems

    ·  Visual/spatial processing impairment (trouble finding things, getting lost)

    ·  Slowed processing of information

    ·  Psychosis

    ·  Seizures

    ·  Violent behavior, irritability

    ·  Rage attacks/impulse dyscontrol

    ·  Anxiety

    ·  Depression

    ·  Panic attacks

    ·  Rapid mood swings that may mimic bipolarity

    ·  (mania/depression)

    ·  Obsessive compulsive disorder (OCD)

    ·  Sleep Disorders

    ·  Attention deficit/hyperactivity disorder

    ·  Autism-like syndrome

    ·  Twitching of the face or other muscles

    ·  Headache

    ·  Neck creaks and cracks, neck stiffness

    ·  Tingling, numbness, burning or stabbing sensations

    ·  Facial paralysis (Bell's palsey)

    ·  Eyes/vision: double, loss, blurry, pain, increased floaters

    ·  Ears/hearing: buzzing, ringing, ear pain

    ·  Dizziness, poor balance, increased motion sickness

    ·  Lightheadedness, wooziness, difficulty walking

    ·  Tremor

    ·  Confusion, difficulty in thinking

    ·  Difficulty with concentration or reading

    ·  Forgetfulness, poor short term memory

    ·  Disorientation: Getting lost, going to wrong places

    ·  Difficulty with speech

    ·  Mood swings, irritability, depression

    ·  Disturbed sleep: Too much, too little, early awakening

    ·  Exaggerated symptoms or worse hangover from alcohol

    ·  Heart murmur or valve prolapse

    ·  Excessively itchy skin

    ·  Hands and/or bottom of feet ache

    ·  Transient muscle pain which jumps around the body.

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Early Detection: 

Virtually everyone involved with Lyme disease agrees that early detection and treatment of Lyme disease significantly improves the chance of a decent recovery. Some experts describe a window of opportunity following infection when treating the disease with antibiotic therapy can result in a high cure rate and lessen the chance of chronic, long-term problems. Although not proven, some suggest that this window of opportunity lasts up to six to eight weeks. TOP

Unfortunately, receiving a Lyme diagnosis followed by adequate treatment can be difficult. It has been reported that it takes an average of 22 months and seven doctors for the average Lyme patient to be diagnosed with a Bb infection. This follows the fact that many people infected with Lyme disease do not remember being bitten by a tick, which can further delay treatment. The inability to diagnose and treat Lyme disease in a timely fashion may be adding to the number of patients who suffer from chronic symptoms.  It is estimated that as many as 15 to 20 percent of Lyme patients suffer from persistent and chronic symptoms.

Treatment:  Lyme disease is a bacterial infection and like other bacterial infections it is treated with antibiotics. Antibiotics are administered orally, with intramuscular (IM) injections, or intravenously (IV) through the veins. Combinations of these delivery methods are common. This multiple or "shotgun" approach to antibiotic therapy is used in hopes of affecting the Bb organism in as many ways as possible. TOP

Lyme patients often ask, "Why am I affected by symptoms different from other Lyme patients?" Another question is, "Why won't an antibiotic that works for someone else work for me?" Just as no two Lyme patients appear to be affected by Lyme bacteria in the same way, a patient's response to antibiotic therapy is highly individual, too. We don't know exactly why this is so, however, some reasons may be:

1. Different strains of the bacteria react differently to each antibiotic.

2. The length of time that the infection remained untreated can affect the response.

3. So too can the amount of time between the onset of symptoms and treatment.

4. Also, the location of the Bb organism in the body.

5. Co-infections (see below).

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Testing:  The diagnosis of Lyme disease remains clinically based or based primarily on symptoms alone. This is because there is no common test available that can accurately rule out or confirm Lyme infection. Amazingly, the lack of a common test also means that medical science cannot precisely determine whether someone is cured of Lyme disease. This situation leads to contradictory treatment guidelines that can lead to more guesswork than what would ideally be good for patients.  Actual treatment for Lyme disease is less than exact which may lead to arbitrary coverage being determined by health insurance companies.  

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Current testing for Lyme disease mainly includes testing for antibodies to the Bb organism. This results in partial guesswork where false positive results and false negative results are common. The ELISA and Western Blot tests are the most common antibody tests for Lyme disease. The Lyme Urine Antigen Test (LUAT) is a newer antibody test that is also being used by Lyme physicians but not in New York. 

A more accurate and somewhat more expensive test is the Polymerase Chain Reaction (PCR) test. It is designed to confirm that Lyme bacteria are present. A positive PCR test almost always guarantees that Lyme disease is present, depending on the accuracy of the lab performing the work. However, because it can be difficult to isolate the Bb organism's DNA, a negative PCR test does not eliminate a Lyme disease diagnosis.

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Lyme disease is complicated and confusing. Possibly due to the degree of complication, medical science can't agree on the diagnosis and treatment of Lyme disease and its coinfections. This leaves Lyme patients and their families with more difficulties trying to understand tick-borne illnesses.  Although it is not easy to learn about Lyme disease, patients are left with little choice other than to educate themselves.

Areas of concern as they relate to Lyme disease:  

Co-infections:  TOP 

Co-infections can include more than one strain of the Bb organism and may include the tick-borne disorders of Babesiosis, Ehrlichiosis, Bartonella, Mycoplasma, Anaplasmosis and so on. Babesiosis, caused by a protozoa and Bartonella and Ehrlichiosis are bacterial infections and all can present Lyme-like symptoms.   Treatment for co-infections may require different antimicrobials than medicines used for Lyme disease. Information on co-infections is relatively new and new discoveries could be made at any time. For this reason all Lyme patients, both new patients and those with established, long-term symptoms may want to request additional tests or tick panels that include co-infections if they have not already been performed. Unfortunately, no current test is said to be able to accurately determine which organisms are present. This means that a diagnosis of the presence or absence of infection from tick borne disease depends on a clinical evaluation, where the blood tests may or may not indicate the reality and the doctor must evaluate the risk factors, symptoms, etc, in addition to laboratory tests.  Additional re-testing may be required and also may be beneficial to help determine a patient's infective status.

Jarisch-Herxheimer Reaction: TOP 

Without an accurate and common test for Lyme disease, the Jarisch-Herxheimer reaction is often used as a clinical diagnostic tool to help determine the presence of Lyme bacteria. A Herxheimer reaction occurs in Lyme patients after they begin antibiotic therapy. It is important to note that a Herxheimer reaction is not a common reaction that is associated with most other diseases or with other viral, bacterial or fungal infections. It is limited to a few specific bacterial infections including Syphilis and Lyme disease which are both caused by spirochetes, or spiral-shaped bacteria.

A Herxheimer reaction occurs when symptoms increase while a patient is taking antibiotics.  Some call it a healing crisis because the patient gets worse before they get better. A Herxheimer reaction usually occurs within days to weeks of starting antibiotic therapy. In simple terms, a Herxheimer reaction occurs when Lyme bacteria are killed off more quickly than the body's organs (kidneys and liver) are able to process and eliminate them. This increases the number of toxins in the blood stream. The higher the die-off, the higher the toxin count, the more severe the symptoms are that the patient experiences.  

Some health care professionals believe that a Herxheimer reaction can help to confirm that the Bb organism is present in the body by the probability that a bacteria die-off is causing the herx. If the die-off coincides with antibiotic use, it can confirm the effectiveness of the antibiotic. Thus, for the frontline physician, the Herxheimer reaction can assist in the clinical diagnosis by unofficially confirming the presence of the Bb organism.  For more about Herxheimer Reactions, go to:

   TOP 

This information just touches the surface of Lyme disease. The next section will focus on the use of antibiotics in fighting Lyme disease, how antibiotics work and why more than one antibiotic may be needed for treatment. It's important to look at the complicated survival tactics that the Bb organism uses to evade both the antibiotics and our immune system and therefore how it can cause devastation to our bodies.

Antibiotics: Lyme disease is a bacterial infection caused by a spirochete (spiral-shaped bacteria) called Borrelia burgdorferi (Bb). Like other bacterial infections it is treated with antibiotics.  Antibiotics are administered orally, or with intramuscular (IM) injections, or intravenously (IV) through the veins.

Physicians may prescribe more than one oral antibiotic at a time and they may also combine oral antibiotics with IM or IV antibiotics. This shotgun or multiple approach to antibiotic therapy is used in hopes of attacking the Bb organism in as many ways as possible. TOP

Just as no two Lyme patients appear to be affected by Lyme bacteria in the same way, a patient's response to antibiotic therapy is highly individual, too. The individual nature of an antibiotic's effect on a patient is believed to be due in part to the theory that different strains of the bacteria react differently to each antibiotic. Other factors may include the length of time the infection went undiagnosed and untreated, the amount of time between the onset of symptoms and treatment, and the location of the Bb organism in the body.  Co-infections or the transmittal of more than one infectious disease can occur from a single tick bite. Co-infections may include more than one strain of the Lyme bacteria and may include the tick-borne disorders of Babesiosis, Ehrlichiosis etc. See co-infections.

 

 

 T

The Bad News: TOP 

Even though physicians can out-maneuver some of the Lyme bacterium's survival tactics-such as using combinations of antibiotics-there are those who believe that antibiotics alone cannot eliminate the Bb organism particularly if it is in a dormant or sleeping state. Remember, it is believed that Lyme bacteria can morph, or shift to a dormant state by entering and residing in a human cell or it can encapsulate itself in the body's protein. Recent work by Dr. Alan MacDonald suggests that another reason some patients become chronically sick with Lyme disease is because the spirochetes form a bio-film.  The spirochetes appear to have complex ways of neutralizing the body's defensive mechanism and neutralizing the offensive mechanism employed by antibiotics.

 

Mechanism of Action:  TOP

Antibiotics and other anti-infective agents (anything that counteracts infections) can kill different kinds of bacteria. However, an antibiotic's mechanism of action-or how they kill bacteria-varies depending upon the type of antibiotic used. Because the mechanism of action varies among antibiotics, a specific antibiotic or combination of antibiotics may be a better choice than other combinations when treating Lyme disease.

For example, Penicillins and Cephalosporins circulate mainly in the body's fluids and may not be capable of entering cells where the Bb organism can reside. This indicates that these classes of antibiotics may not be able to eradicate Lyme bacteria from the body, especially Lyme bacteria that reside in human cells or those that move away from blood blow and towards other parts of the body.

Other classes of antibiotics, such as Macrolides like Zithromax (Azithromycin) seem to have higher tissue concentration levels when compared to the blood concentration levels it usually attains. Zithromax is also known to have an ability to penetrate some cells in our body more effectively than other antibiotics. This may counteract Lyme bacteria that have the ability to enter certain types of our cells. Thus, Zithromax is prescribed specifically to attack Lyme bacteria that may become established within the body's cells, along with killing Lyme bacteria residing outside the cells in deep tissue areas. 

Note that some antibiotics such as Doxycycline, work effectively as bactericides at high levels (higher doses) and as bacteriostats at lower blood levels.  (-cide: killing the bacteria; -stat: keeping the status quo, or keeping the growth of new bacteria down)  If there is any question of the efficacy of the Doxycycline levels in a patient's blood, then a Peak and Trough titer could be done.

Survival Tactics of Borrelia: There appears to be two major ways that Lyme bacteria evade the body's defenses and also evade antibiotic therapy. First, research shows that Lyme bacteria can use the body's own protein to encapsulate itself. This is also described as the Lyme bacterium shifting to a dormant or sleeping state. The reason that the organism undergoes this change is not fully understood. Some believe that this is a survival tactic because it may not be possible for our immune system to destroy the bacterium when it is in this state. Also, antibiotics may have little or no effect on the Bb organism when it is encapsulated and dormant. TOP

Second, research also shows that the Lyme bacterium appears to be able to enter certain types of human cells. This ability may also be considered a survival tactic because it results in the bacterium evading some or all antibiotics as well as the body's immune system.

However, the final piece of this puzzle has to be considered a genetic marvel no matter how devastating it is to Lyme patients. When Lyme bacteria have successfully survived attacks from our body's defenses and from antibiotics by shifting to a dormant or sleeping state, they shift back to an active state and resume reproduction and effectively re-seed the body with Lyme bacteria. This reestablishes the Lyme infection. If it is true that dormant bacteria can wake up and re-seed the body, this particularly devastating maneuver indicates that short-term courses of antibiotics may be ineffective in eradicating Lyme bacteria from the body. TOP

Picture below: pleomorphism where Borrelia spirochete changes form

Conclusion 

Science in general prefers the absolute.  Medical science in particular, tends to trust in - or - depend upon - an ideology of an absolutely unmistakable testing process, with results that give indisputable, nearly 100% accurate data but which are terribly lacking for Lyme disease.  Regardless, many conclusions for treatment or denial of treatment are based on these tests. Although the CDC states that testing is for surveillance criteria only and that, to diagnose and treat, a clinical evaluation of Lyme is suggested, patients continually report that the results of their blood testing was used as a sole diagnostic tool and was then followed by a strict adherence to IDSA treatment guidelines. Ironically, the IDSA does qualify most of their guidelines with words like "Most patients usually" or In most cases" but practicing physicians and medical journalists who interpret the guidelines do not allow for - or give a second thought to - the cases that fall outside the normal range of the Bell Curve.  If there were 2 million people estimated to have had Lyme disease, following the estimate that 15 to 20 percent of Lyme patients may develop chronic symptoms, then there may already be  as many as 300,000 to 400,000 who fall outside the Bell Curve who do not get well and who are being dismissed as not important.  Whatever the number is, every year, as new cases happen, more people are also added to list of the forgotten. TOP 

Lyme disease was not recognized in the United States until the late 1970s. With over 18,000 published scientific articles on tick borne diseases there is still much we don't know. Good news: Doctors who are treating the more difficult cases say that based on current scientific knowledge, enough can be done to diagnose and treat Lyme disease.  Therefore the good news is that tick-borne diseases can be treated and patients can be helped. Additionally, patients will fare better when the medical and scientific community ends their feud.  We believe that issues of tick-borne disease must remain open to question and that, for any discussion of Lyme disease, medicine shouldn't make absolute claims. Treatment must be individualized when cases are complex.

Medical science will continue to be perplexed and divided about Lyme disease and we can only guess what needs to happen for the issues to be resolved. The consequence for Lyme patients is that they are often left to fend for themselves in a confusing and contradictory medical environment. In an ideal world, patients suffering from Lyme symptoms would not be put in this situation by a medical system whose purpose is to help, not frustrate their recovery.  The best way for patients to help for their own sakes and for all, is to become educated and to speak out to educate others.

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The Politics of Lyme Disease:  

One of the more perplexing questions about Lyme disease is why a three to six week course of antibiotics won't eliminate the disease for everyone. Before we speculate on how the bacteria evades the body's defenses we first have to look at the politics of Lyme disease to see why Lyme patients often have difficulty receiving adequate antibiotic treatment.

Some health care professionals are more tradition-bound and conservative in their approach to Lyme disease. They have adopted protocols for treating Lyme disease that don't go much beyond relatively short-term antibiotic therapy. This group believes that in almost all cases just one or two courses of oral antibiotics are all that are required to eradicate the bacteria. They believe that persistent, chronic Lyme symptoms are not the result of an ongoing infection in the body. They believe that what appears to be a Lyme infection is probably the result of a dysfunctional auto-immune system response or some other process occurring in the body. TOP

Others-especially those physicians who remain on the frontline of the long-term treatment of Lyme patients-believe that Lyme bacteria are not always eliminated by short-term courses of antibiotics. They believe that this is especially true if the disease went undiagnosed and untreated for months or years following infection.

Further, this latter group believes that the Bb organism can persist through months and even years of antibiotic therapy, depending upon a wide range of individual factors relating to the patient and to the particular strain(s) of bacteria the patient contracted.  In fact, Dr. Benjamin Luft's recent work, reported in 2008, proved that a virulent strain of Bb exists. 

The survival characteristics of the bacteria themselves play a crucial role in Lyme bacteria's persistent longevity.  As previously mentioned, it is believed that Lyme bacteria can shift to a dormant state by entering and residing in a human cell or by encapsulating itself in the body's protein. Some believe that this has the effect of neutralizing the body's defensive mechanism and the offensive mechanism employed by antibiotics.

If it is true that Lyme bacteria can evade antibiotics by shifting to a dormant mode this has serious consequences for the diagnosis and treatment of chronic, persistent symptoms.  Specifically, this means that conservative treatment protocols, calling for short-term courses of antibiotics, could actually prolong some cases of Lyme infection. If chronic Lyme symptoms are the result of an active, late-stage Lyme infection, any delay in full and comprehensive antibiotic treatment may have devastating results for a Lyme patient.

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