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.

On July 30, the Infectious Diseases Society of America (IDSA) will hold a day-long hearing in Washington DC to review its controversial 2006 Lyme disease treatment guidelines.

This hearing is part of an antitrust settlement Connecticut Attorney General Richard Blumenthal negotiated to address “serious flaws” in the IDSA guidelines.

Read the Attorney General’s press release on the guidelines.

The hearing is not open for public attendance but it will be streamed live over the Internet from the IDSA website. For more on the IDSA broadcast and the 18 patients, doctors, and research scientists who will testify, see the IDSA website

At the same time, the California Lyme Disease Association (CALDA) will provide up-to-the-minute summaries of the testimony on its new “IDSA hearing” blog, along with an open discussion forum. For more information, visit the CALDA website

This hearing is the first glimmer of hope that the definition, diagnosis, and treatment of Lyme will finally move out of the hands of one politically-motivated group and into the mainstream of accepted (and reimbursed!) medical care.

UPDATE: 7/25/09

From www.lymepolicywonk.org.

“The IDSA settlement agreement calls for an open public meeting which must be aired live over the internet. I have serious concerns about the restrictions the IDSA is imposing on people who want to watch the hearings and am discussing these with the Connecticut Attorney General’s office, but meanwhile I want to provide you with information so that if you want to watch you are prepared. The thought of live on the Internet was simply that people would click a url and be able to watch. But the IDSA has placed a number of barriers to access:

People are required to have two pieces of software in order to access the hearing, Windows Media Player and Microsoft Silverlight. While some people may have this software on their systems, others will need to download it. You-niversity, which is the service providing the webcast, has a test you can run to see if your computer can view the site. In order to run the test, you must provide a name and email. You can run this test today and should do this to make sure you will not have any problems.

http://www.idsociety.org/WorkArea/showcontent.aspx?id=14974

Apple computers may not have Windows Media Player installed and Microsoft Silverlight is a relatively new software program. Technical support at You-niversity told me that their webcasts do not work with Microsoft Chrome browser but will work with Firefox and Safari. You-niversity.com websites says that it does not work with Apple, but a friend went through the process and got it working. If you have technical problems, they can call their support number (1-877-867-7300) and wait for a call back. Mine took ½ hour to call back.. Do not put this step off. You do not want to be calling the day of the hearing when the phone banks may be overloaded.

People must register for the event. This requires disclosure of private information. I assume this will be a name and email, but it could be more. I was told by you-niversity technical support that registration it is not “required” by their system, but IDSA is requiring it.

The registration period is 20 minutes before the event and begins at 7:40 am EST. From response to my survey, I would say we may have 3,500 people or more trying to register for this event. I do not know whether their system can handle this volume of people in that time frame, but I have serious concerns.”

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.