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

you complain about your symptoms. Beyond the insult of being told “it’s all in your head,” there are other equally frustrating stressors of having Lyme Disease.

Stressors like:

• Chronic Lyme shows up differently in each person.
• Chronic Lyme treatment doesn’t follow any one particular protocol.
• Healing chronic Lyme doesn’t follow any one particular path.
• Healing chronic Lyme takes much longer than most patients, or their friends and families, expect.
• Many doctors who treat for Lyme don’t understand how complex an illness it is and therefore don’t treat it long or comprehensively enough
• Many doctors who successfully treat long-term Lyme patients do so under the radar of the traditional medical establishment because some have either lost or been threatened with losing their medical licenses.

None of this is news to anyone who has struggled with chronic Lyme. It’s very difficult to get well when you feel the deck in stacked against you.

If you’re tired of spending hours researching Lyme on the Web,
If you’re confused about all the conflicting information,
If you don’t feel comfortable sharing your health issues in a public forum,

We can help!

We can help you sort through the maze of options, information, and conflicting advice on Lyme. More important, we can provide you with personal support, daily if needed, to conquer your illness and regain your health (and sanity!).

While much of the information on this blog is free, soon we’ll launch a very reasonable membership service. By joining, you’ll be able to listen to monthly podcasts by an expert in the field of Lyme diagnosis and treatment and more importantly, be able to join others with chronic Lyme on your own private email list. Support at your fingertips from people who know about you and your specific health situation. Stay tuned for more information.