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.

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

It was an exhausting day but well worth the effort.

In a nutshell, nine IDSA panelists, none of them among the 14 members of the 2006 IDSA Lyme Guidelines committee, heard 18 speakers representing both sides of the Lyme controversy. A few panelists asked discerning questions after most presentations (some speakers went over their alloted time),

Most presentations were a blur of PowerPoint slides overly filled with technical medical and research data. You can view or download slide presentations of selected International Lyme and Associated Diseases Society (ILADS) -supportive speakers at the California Lyme Disease Association (CALDA) website. Included on the CALDA site are links to the IDSA hearing archives.

Note: I especially liked clinical researcher Dr. Kenneth Liegner’s clear, cogent presentation.

The Under Our Skin blog also has a good summary of the hearings.

As a reasonably smart chronic Lyme patient, here’s my take on the hearings.

The ILADS speakers and LLMDs presented solid data refuting the IDSA limited definition of Lyme and recommendations for short-term antibiotic treatment. They made a well-documented case for chronic Lyme being a very real and dangerous illness. This included pointing out serious design flaws in the four small research studies repeatedly used by IDSA as the basis for denying patients long-term treatment.

The IDSA presenters, including Gary Wormser and Eugene Shapiro from the IDSA Guidelines committee, reterated their stance on Lyme, offering no new findings.

I agree with the assessment of science writer Kris Newby of Under Our Skin, who said:

Overall, the weight of evidence for the existence of chronic Lyme far outweighed the IDSA “expert opinion” that the symptoms that linger beyond treatment are due to a “medically unexplained symptom” (MUS), labeled as “Post-Lyme Syndrome” by the IDSA authors.

Unbelievably, one pro-IDSA speaker even went so far as to hypothesize that Lyme patients who remain ill have a “somatic disorder.” Oh, no! Not another “it’s all in your head” explanation. You can imagine the kind of comments that elicited among the tweeters.

The plan is for the hearing panel to spend a few months assessing the hearing information to determine whether the existing guidelines should be kept, edited, or entirely rewritten. The panel expects to complete its review by the end of 2009.

Along with Kris Newby and many others, I’m guardedly hopeful that the hearings will change the IDSA stance on Lyme and it’s treatment. Despite this legally-mandated hearing, nothing so far from IDSA, members or officers alike, indicates that they are truly open to revising their limited and increasingly outdated views of Lyme.

We’ll see in four months.

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.

Later stage (Chronic) Lyme

Lyme disease that isn’t treated long enough (or at all due to misdiagnosis) can turn into much more serious complications, including immune system breakdown, additional infections, hormonal imbalance, and more. Quality of life decreases, making normal living almost impossible. Under these circumstances, treatment becomes longer (1-4 years or more), more aggressive, and hence more time-consuming and expensive.

In a nutshell, getting rid of Lyme, especially chronic Lyme, is difficult. How quickly a person heals from Lyme 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

Healing Lyme can be a frustrating, depressing, and lonely road. Those who have it and those closest to them need to take the complexity of Lyme very seriously. Lyme is like no other infectious disease we’ve known in the past.