Lyme disease is like no other bacterial infection. With most bacterial infections, you expect to take an antibiotic and be over the infection within a week to 10 days. Despite treatment, however, many people with Lyme disease often end up with more serious, widespread infection.

Borrelia burgdorferi: An odd bacterium

The Borrelia burgdorferi spirochete causes most Lyme disease in the United States. At least two other Borrelia species lead to Lyme in the rest of the world. Borrelia burgdorferi is a parasite transmitted by infected ticks from deer, mice, and other small rodents that harbor the spirochete. These animals can have huge numbers of the bacteria and not show any symptoms of disease. Yet when these same spirochetes are transmitted to humans, they cause problems in many organ systems.

Why does the Lyme bacterium affect humans and not the infected animals?

The primary difference is the way the spirochete is transmitted and the way the human immune system reacts to this invader. In humans, the Lyme organism has learned to survive brilliantly.

Evasion starts with invasion

Starting as early as the tick bite itself, Borrelia burgdorferi can evade the best efforts of the immune system in several ways. The tick has certain factors in its saliva that coat the invading spirochetes, protecting them as they enter the body through the skin. This prevents the immune system from “seeing” them. For weeks after a tick bite the immune system of someone infected with Borrelia burgdorferi may not produce antibodies against the bacterium.

Structure is important for evasion

Then there’s the unique feature of Borrelia itself, its flagellum. The flagellum gives the spirochete the ability to cause profound disease. A flagellum is typically an outside tail a bacterium uses to propel itself from place to place. In the Borrelia corkscrew-shaped spirochete, however, the flagellum is located inside the bacteria’s body, somewhat like the skeleton of a snake. The flagellum helps the bacterium invade tissues and thick mucus that would stop most bacteria in their tracks. The flagellum also excites the immune system.  Although the immune system can now see the bacterium, it can’t effectively attack it. Instead it launches a massive inflammatory response that ends up damaging surrounding human tissue rather than killing the bug.

Evasion continues with metamorphosis

Once inside the body, the saliva-protected spirochete also starts to change the proteins on its outer cell wall. The immune system typically uses cell wall proteins to detect a foreign invader, develop specific antibodies to fight it, and mount a coordinated immune attack. But the Borrelia spirochete is like a spy who changes his disguise to blend into the crowd. The police have an initial description of the spy, but it’s no longer accurate.

Lyme symptoms and the immune system

The prolonged immune response, trying to fight Borrelia burgdorferi infection, causes most of the symptoms of Lyme disease, including joint inflammation, skin changes, and neurological problems.

Another aspect of Borrelia burgdorferi is that its changing outer proteins further stimulate the immune system. To return to our spy analogy, it’s as if the police know the spy is disguised and somewhere in the crowd. But because they can’t mount a focused attack, they send all available officers to the scene to destroy everything in the environment. In our analogy, Borrelia burgdorferi is the spy and the officers are immune system cells. The environment, unfortunately, is the tissues of the body.

Immune cells that try to fight the invaders include neutrophils, monocytes, macro-phages, and dendritic cells. None are very effective at clearing the infection, but they do wreak havoc when they are in places like joints. Massive numbers of immune cells that invade the joint tissue take up space and release toxic compounds in an attempt to destroy the spirochetes. These cells (particularly neutrophils) release proteins and small molecules such as cytokines, which further stoke inflammation. The result of all this immune activity is joint pain, inflammation, and persistent arthritis. The same principle operates in virtually all organs affected by Lyme disease.

Lyme disease in the brain

In the central nervous system, the story is slightly different. The brain doesn’t have the same immune cells that most other body tissues have. In the brain and spinal cord, the de facto immune system is cells such as astroctyes and microglia. These cells are bad at detecting and eradicating infections. Moreover, they release substances (like quinolinic acid) that can be directly or indirectly toxic to nerves. Similar to elsewhere in the body, they kill human tissue in an effort to kill the spirochete. The infection persists and the brain is damaged as a result of the failed attack.

The unique way that the human immune system responds to the Borrelia spirochete infection causes more problems than it solves. The more that scientists discover about the human immune system and Lyme disease, the better equipped they’ll be to develop treatments that can modulate these painful immune system effects. The ultimate goal of course is reducing or getting rid of Lyme disease altogether.

Thanks to the California Lyme Disease Association (CALDA) for this heads up.

According to Lorraine Johnson, the CALDA Lyme Policy Wonk, two poster sessions at the IDSA annual meeting last fall stated that most of IDSA treatment guidelines, including those for Lyme Disease, are based mainly on opinion, not actual scientific evidence. Only 15% of their “strong recommendations” are supported by “strong evidence.”

In an article in the medical journal Infectious Diseases in Clinical Practice, IDSA member Thomas File, Jr, MD., one of the meeting presenters, states:

Ideally, all recommendations from guidelines would be based on high-level, graded evidence (eg, randomized clinical trials). However, because published level I evidence is not often available, guideline writers are challenged with considering a vast array of different levels of support and creating clinically applicable and clear recommendations from it. Only in the minority instances is there an abundance of evidence available that leads directly to an indisputable recommendation.

Click here to download a free PDF of the journal article, Guiding in the Face of Minimal Evidence.

Also see my previous post on Lyme Disease Blog – IDSA Review Panel Upholds Treatment Guidelines.

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

There was a Lyme community kerfluffle today with Kodak over their Mother’s Day ad on their Mom-A-Thon website.

The tongue-in-cheek idea of the promotion is to save a mother afflicted with Lackus Appreciatis, an “overwhelming feeling of recurring unappreciatedness and seasonal ingratitude.” In a video featuring actress and singer Florence Henderson, visitors are urged to join the Mom-a-Thon to “cure at least one million moms.”

Beyond the questionable humor of this idea, the site included material offensive to anyone who has or is connected to Lyme Disease. At the bottom of the site was this notice (which was removed after many Lyme sufferers contacted Kodak via their website and I tweeted about the issue on Twitter):
- – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - -
IMPORTANT NOTE ON THE MISDIAGNOSIS OF LACKUS APPRECIATIS

Many cases of Lackus Appreciatis go undiagnosed because the affliction is often mistaken for other ailments, including: Heat Rash, Lyme Disease, Acne Vulgaris, Restless Leg Syndrome, Aolpecia, Hay Fever, Shingles, TMJ.
- – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - -

Lyme is a very serious illness for many people who have it.  Do you think anyone would have
thought it funny if Kodak had written their copy this way:

- – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - -
IMPORTANT NOTE ON THE MISDIAGNOSIS OF LACKUS APPRECIATIS

Many cases of Lackus Appreciatis go undiagnosed because the affliction is mistaken for other ailments including cancer, AIDS, pneumonia, macular degeneration, diabetes, renal failure, dementia, and heart disease.
- – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - -

Kodak, their ad agency, Bradley & Montgomery and any other companies who want to use Lyme Disease in promotions should treat it in the manner that the seriousness of the disease calls for. People who have Lyme Disease have good senses of humor, but having Lyme is no laughing matter.

Technorati Profile

A good place to start:

The International Lyme and Associated Diseases Society

ILADS Brochures – to read online or download.
Treatment Guidelines – by ILADS, Joseph Burrascano, M.D., (one of the first doctors to treat Lyme), and the Infectious Diseases Society of America (IDSA).

Getting Tested for Lyme

No Lyme test is 100% accurate, but some are more reliable than others. The standard CDC ELISA test that many doctors use is notoriously inaccurate. For more on this, read  the ILADS’ Position Paper on the CDC’s Statement Regarding Lyme Diagnosis.

For reportedly more reliable tests, check out these companies. Most offer free test kits. Also make sure to test for Bartonella, Babesia, and Ehrlichia, common co-infections that often come with Lyme.

Perhaps the most widely used test by Lyme-literate physicians is the IGeneX IgM/IgG Western Blot:

IGeneX, Inc.
797 San Antonio Rd.
Palo Alto, CA 94303
Tel. (800) 832-3200
http://www.igenex.com/
NOTE: If you live in New York State, you’ll need to take special tests. Ask about which they are.

Medical Diagnostic Laboratories also offers a Lyme IgM/IgG Western Blot.

MDL Medical Diagnostic Laboratories
East Gate Business Center
133 Gaither Drive, Suite C
MT. Laurel, NJ
Tel (877) 269-0090
http://www.mdlab.com/

Central Florida Research Labs offers a Lyme Antigen Test.

Central Florida Research
342 E. Central Ave.
Winter Haven, Florida 33880
Tel (863) 299-3229
Fax (863) 299-3355

http://www.centralfloridaresearch.com/lyme-disease-test

Finding a Lyme-literate Doctor

Your best bet is to join a state Lyme support group. Because doctors fear losing their medical licenses if medical licensing boards find out they’re treating too many patients for Lyme, they prefer not to have their names on public lists.  So it’s the convention on most online support groups to use a doctor’s last name initial.  However, group members will email you full names if you post a generic request in forums or on message boards.

Free Online Lyme Support Groups

Yahoo! Groups State Lyme Support Groups

Copy and paste the following URL into your browser (with state name added) – http://health.groups.yahoo.com/group/fullstatenamelyme/ – NOTE: Enter the full name of your state followed by lyme, no spaces. You’ll need to login to your Yahoo! account to join a group or register if you don’t have a Yahoo! account. The California Lyme Disease Association runs all these Yahoo! Lyme groups.

MD Junction Lyme Disease Support Group

The MD Junction Lyme group has over 3000 members, many of whom are very knowledgeable about Lyme. Their experienced moderators are always helpful and caring.

http://www.mdjunction.com/forums/lyme-disease-support-forums

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.

If the disease is diagnosed and treated with antibiotics in the early stage, there’s a good chance of curing it so it goes away. If unidentified and untreated, or not treated long enough, it can eventually become chronic, leading to a multi-system illness that is hard to manage and even harder to get totally rid of.  No area of the body is immune from Lyme.

There currently is no vaccine for Lyme.  Having it once provides no immunity. You can get it again.