Lyme disease that isn’t treated long enough (or at all due to misdiagnosis) can turn into chronic Lyme, also know as Late Stage Lyme. The longer the Lyme bacteria stay around and reproduce, the more serious the complications, including immune system breakdown, additional infections, hormonal imbalance, and more.

Under these circumstances, getting rid of chronic Lyme Disease becomes longer (1-4 years or more). Treatment is often more aggressive and hence more time-consuming and expensive. Quality of life decreases, making normal living difficult.

Mind you, not everyone agrees that’s there IS such a thing as chronic Lyme. Doctors following the guidelines of the Infectious Diseases Society of America (IDSA) treat Lyme with an antibiotic for a short period of time. if symptoms persist beyond 6 months, they say the person has Post-Lyme Syndrome, the result of an overactive immune system that hasn’t returned to normal after the Lyme is gone and the person is considered “cured.”

Here’s exactly what the IDSA guidelines say (link below):

There is no convincing biologic evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after receipt of recommended treatment regimens for Lyme disease. Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic (>6 months) subjective symptoms after recommended treatment regimens for Lyme disease.

Therapeutic modalities not recommended. Because of a lack of biologic plausibility, lack of efficacy, absence of supporting data, or the potential for harm to the patient, the following are not recommended for treatment of patients with any manifestation of Lyme disease: first-generation cephalosporins, fluoroquinolones, carbapenems, vancomycin, metronidazole, tinidazole, amantadine, ketolides, isoniazid, trimethoprim-sulfamethoxazole, fluconazole, benzathine penicillin G, combinations of antimicrobials, pulsed-dosing (i.e., dosing onsome days but not others), long-term antibiotic therapy, anti-Bartonella therapies, hyperbaric oxygen, ozone, fever therapy, intravenous immunoglobulin, cholestyramine, intravenous hydrogen peroxide, specific nutritional supplements, and others.

You can download the IDSA Guidlines here.

On the other hand, so-called Lyme-literate physicians (LLMDs) agree that Lyme can persist far beyond 6 months. They tend to follow the guidelines of the International Lyme and Associated Diseases Society. Click here for the ILADS Guidelines.

You can also download a free PDF of a research article by Daniel Cameron, MD, a respected LLMD from the Department of Medicine, Northern Westchester Hospital, Mt. Kisco, NY titled Proof That Chronic Lyme Exists.

People with chronic Lyme, including me, will tell you that our symptoms are not psychosomatic. Borrelia burgdorferi (Bb) is a master at hiding out in the body to survive, going from adult spirochete to cell-wall deficient form to cyst and back. For those who also have one or more of the common Lyme co-infections (Babesia, Bartonella, and Ehrlichia), treatment gets trickier. In addition, along the way Borrelia disrupts the immune system and body metabolism, allowing other normally dormant microorganisms like viruses, parasites, and fungi (yeasts and molds) to activate and also cause symptoms.

No two chronic Lyme patients have the same symptoms. Nor do they follow the same course of treatment. For those reasons, and the fact that I am not a medical doctor, this is not the space to discuss the specifics of chronic Lyme treatment beyond what has already been explained in my prior post Gettng Rid of Lyme.

Suffice it to say getting well from this infectious onslaught is often a roller coaster ride of improvement and relapse. Still not well understood, the complex of diseases continues to prove a challenge for both patient and doctor.

Looks like the battle for long-term Lyme treatment continues!

Press Release April 22, 2010

SPECIAL REVIEW PANEL UNANIMOUSLY UPHOLDS LYME DISEASE TREATMENT GUIDELINES
Short-term Antibiotics Proven to be Best Treatment for Patients

Infectious Disease Society of America
News Release

Arlington, Virginia – A special Review Panel has unanimously agreed that no changes need be made to the 2006 Lyme disease treatment guidelines developed by the Infectious Diseases Society of America (IDSA), the nation’s pre-eminent authority on infectious diseases…

Read the rest of the release at:
http://www.lymedisease.org/news/lyme_disease_views/399.html

Read the IDSA Final Report and download a PDF at:
http://www.idsociety.org/Content.aspx?id=16499

If Lyme Disease is diagnosed within the first few weeks after infection and treated with antibiotics for long enough, it can frequently be cured. Unfortunately, there’s no general agreement on what “long enough” means. Most doctors prescribe an antibiotic for two to three weeks, four weeks tops. Often this is not enough.

Here’s why: The Borrelia bacteria can exist three ways in the body – as spirochetes traveling around in the bloodstream, in cell-wall deficient form hitching a ride inside red blood cells, or as cysts hiding where antibiotics are unlikely to reach them. Since it takes four months (120 days) for red blood cells to be completely replaced, any cell-wall deficient Lyme not killed in a few weeks (14-30 days) are free to replicate and cause more harm. Encysted Lyme can also reactivate.

Traditional Lyme Disease Treatment

The most common oral antibiotics prescribed for Lyme are doxycycline or minocycline for adults and amoxicillin for pregnant women and children. Erythromycin, azythromycin, and clarithromycin (Biaxin) are also used, usually in combination with another drug. Ceftin or Suprax are used orally, or Rocephin and Claforan intravenously. Flagyl is used for the cystic form. Medication choice depends on a number of personal and health factors. Typically antibiotic therapy needs to be changed from time to time when a patient reaches a plateau in recovery.

People whose symptoms don’t go away or get worse after 2-4 weeks of antibiotic treatment may have other infections as well. A large number of Lyme patients have Babesia, Bartonella, and/or Ehrlichia. Various strains of mycoplasma and chlamydia may be also be present. Furthermore, any of the 8 herpes viruses humans get, including Epstein Barr virus and Cytomegalovirus, can be reactivated.

The immune system can usually get rid of co-infections if Lyme is treated early when their load is typically low. Otherwise, full-blown co-infections further complicate the healing process. Many of these infections are immunosuppressive, meaning they weaken the immune system so it can’t work properly. Lyme won’t go away until co-infections are also treated.

Many Lyme patients understandably worry about using long-term antibiotics. Overusing antibiotics can harm the body and lead to drug-resistant bacteria. However, most Lyme-literate doctors will tell you that the effects of being on antibiotics for a long time are minimal compared to the crippling disability and most-certain death if Lyme and co-infections are not treated.

The International Lyme and Associated Diseases Society (ILADS) has been at the forefront of Lyme education and treatment since 1999. In 2004 they published their evidence-based, peer-reviewed Lyme disease guidelines.  Another group, the Infectious Diseases Society of America (IDSA), offers far more conservative guidelines. Unfortunately a political battle between these two groups of doctors makes getting treated effectively for Lyme very difficult.

Download the ILADS guidelines here and read a summary of the IDSA guidelines. Download the full IDSA guidelines here.

Alternative Lyme Treatment

There are many alternative, non-antibiotic treatments for Lyme, with new ones popping up regularly. Some Lyme patients have reported success with alternative therapies, but it’s wise to do your homework before heading in this direction.  Many if these modalities are experimental and not medically certified for Lyme; they could ultimately be harmful or even fatal.  If you want to use alternative treatments, make sure you do it with the supervision of a qualified medical professional.

Some of the more popular therapies, in alphabetical order (not a comprehensive list) are:

Acupuncture, andrographis, aromatherapy, artemisia, bee venom, Chinese herbs, cat’s claw, colloidal silver, colonics, colostrum, cranial sacral therapy, dietary changes, digestive enzymes, far-infrared sauna, garlic, glutathione, grapefruit seed extract, homeopathy, hyperbaric oxygen therapy, Japanese knotwood, liquid oxygen, lymphatic drainage, olive leaf extract, ozone therapy, resveratrol, Rife machine, salt and Vitamin C, spilanthes, Swedish sauna, tai chi, and various combinations of vitamins and minerals.

Many doctors use a combination of antibiotics and alternative therapies to treat Lyme.

Lyme Detox

Since spirochetal bacteria release toxins when they die (unlike other bacterial infections), dead Lyme can cause as much trouble leaving the body as when they’re alive. Detoxification can overtax the organs responsible for clean up – the liver, intestinal tract, and kidneys, especially if it happens too fast.

Many people call the uncomfortable but normal side effects of Lyme detox a “healing crisis,” “flare up,” or “die-off.” The more technical name is Jarisch-Herxheimer reaction.

This reaction (also called Herxheimer or Herx for short) is named for two European dermatologists working independently at the turn of the 20th century on the treatment of syphilis (also a spirochete). Adolf Jarisch, an Austrian, first reported this treatment reaction to in 1895. Karl Herxheimer a German, followed in 1902.

A Herxheimer reaction can include headache, swollen glands, skin lesions, joint or muscle pain, chills, cold hands and feet, excessive perspiration, low-grade fever, a rise or drop in blood pressure, nausea, constipation or diarrhea, itching, hives and rash. Other symptoms have also been reported.

If the Herxheimer lasts more than a few hours, it may be necessary to decrease or temporarily stop treatment until it goes away. Sometimes hives and rash are mistaken for an allergic reaction to the drugs being used. Close follow-up by a qualified medical professional is therefore a must to help manage the erratic course that Lyme treatment typically takes.

For Late Stage Lyme, see our post on Chronic Lyme for more information on what happens if Lyme isn’t treated or isn’t treated adequately and symptoms persist beyond 6 months.

How quickly a person heals from chronic Lyme Disease depends on many factors, including:

• how long they’ve had it
• how serious their symptoms are
• how their body reacts to treatment
• their financial resources
• the state of their mind and emotions
• the quality of support they get from others

In a nutshell, healing Lyme can be a frustrating, depressing, and lonely road. Lyme is like no other infectious disease we’ve known before. Those who have it and those closest to them should take Lyme very seriously.

Other early, acute Lyme symptoms are flu-like – fatigue, achy muscles or joints, fever, chills, stiff neck, swollen glands, and a headache. Most doctors base their diagnosis of early Lyme primarily on the rash and accompanying symptoms. There are blood tests for Lyme, many of which return erroneous results. We’ll have more to say about testing soon.

If Lyme is identified in this early stage and treated with an appropriate course of antibiotics, it usually goes away. Treatment, however, doesn’t provide immunity; you can get Lyme again if another infected tick bites you. There is no Lyme vaccine.

It would be great if Lyme got caught early and treated in everyone who has it. But Lyme is a very tricky disease.

Some people with classic early Lyme symptoms never get treated because they either don’t go to their doctor or their doctor doesn’t suspect Lyme. Some doctors do diagnose Lyme but don’t treat it long enough. And some people infected with Lyme never get any early symptoms.

Lyme is often hard to diagnose because many symptoms are non-specific (fever, weakness, tingling and numbness, headache, lack of energy, moodiness, or achiness). Also, many doctors don’t know much about Lyme or don’t believe that it’s a prevalent illness, especially in areas that aren’t known to be habitats for the Ixodes ticks that carry Lyme.

Without treatment, the Lyme eventually becomes more debilitating.

Untreated, the bacteria can lie dormant and appear months or even years later. Chronic Lyme mimics the symptoms of over 350 diseases, including multiple sclerosis, lupus, Rheumatoid Arthritis, and Parkinson’s. Sadly, many people with chronic, late-stage Lyme spend years and substantial sums of money being treated for other diseases before finally learning that they have Lyme.

Chronic Lyme Symptoms

Most people chronically ill with Lymes have a combination of symptoms, compounded by the symptoms of other co-infections they may have. No two Lyme patients have exactly the same complaints.

Lyme spirochetes travel from the site of the bite to anywhere in the body via the skin, lymph system, and blood. They can ultimately cause problems in all body systems.

Credit: Michael Abbey/ Photo Researchers, Inc. - Borrelia burgdorferi bacterium in a blood smear

Here’s a plain-English list of common symptoms:

Brain and Central Nervous System: migraines, dizziness, brain fog, poor memory, poor sleep, lack of verbal fluency, confusion or disorientation, decreased ability to concentrate, facial nerve tics or paralysis, sore jaw, sinusitis, mood swings, difficulty chewing or swallowing, sore throat, hoarseness, muscle twitches, numbness and tingling, shooting pains, and lower back or neck pain. Lyme has also been found to mimic all the psychiatric disorders.

Muscles, joints, and bones: pains that come and go (with or without swelling), cramps, stiffness.

Circulation: too fast or two slow heart rate, irregular heartbeat (palpitations), inflammation of the heart muscle or arteries, and chest pain.

Breathing: sinusitis, difficulty breathing, and pneumonias.

Skin: rashes, itching, crawling sensations, benign cysts and nodules, and skin discoloration.

Eyes: pain, inflammation, blurred or double vision, retinal damage, floaters, flashing lights, light sensitivity, dry eye, and blindness.

Ears: itching, earache, buzzing, ringing, and sound sensitivity.

Digestive tract: nausea, vomiting, diarrhea, constipation, loss of appetite, mild liver function abnormalities, and spleen tenderness and enlargement.

Genitourinary tract: inflammation of the urethra and bladder, pelvic pain, testicular pain, and loss of sexual desire.

General: tiredness, lack of stamina, fever, vague discomfort, irritability, nervousness or anxiety, and weight loss or gain.

Borrelia is a brilliant bacterium that can avoid detection by the body’s immune system by changing shape, becoming cell-wall deficient (living inside red blood cells) or encysting over with albumin, which antibiotics can’t reach, and hiding out in a dormant state in hard to reach places like the spaces between ligaments and bones.

If you suspect your or someone you know has Lyme, you should find a doctor who knows about the disease and how to treat it correctly.  The earlier you get treatment, the better.

Lyme is not just another little infection that goes away in a week or two; people have died from it.