Monday, October 14, 2013

Part Eleven: Living with Chronic Lyme Disease: a long and difficult journey

Part Eleven: Treatment of Chronic Lyme Divides the Medical Community

The next part of my journey involved treatment for me and my kids. Sadly, my doctor was closing her private practice, though she said that she would have referred me to another doctor anyway, for she didn't feel she had the expertise to treat me and my children for Lyme. I had already made an appointment at a tertiary medical center with an Infectious Disease doctor, but she cautioned me NOT to do this and referred me to another holistic doctor who had much expertise in treating Lyme.

I was soon to learn that there are two different schools of thought regarding Lyme treatment.  Mainstream doctors follow the Center of Disease Control (CDC) guidelines for reporting cases of Lyme Disease to the Department of Infectious Disease.  This guideline strictly adheres to certain criteria being present in order to officially diagnose a patient with Lyme Disease and are equally as specific regarding what that treatment should entail.  These guidelines are disputed by “Lyme-literate doctors” who have found that many patients have Lyme but don’t exhibit all the characteristics thought typical of early stage Lyme.

The CDC also denies that there is such a thing as Chronic Lyme Disease, and instead believe that some patients with ongoing symptoms suffer not from an ongoing infection but have developed an autoimmune disease instead. Doctors that treat according to the CDC guidelines customarily prescribe antibiotics (usually Doxycycline) for a short time and any symptoms that persist after treatment are usually treated with palliative meds as opposed to long term antibiotics.

The other "Lyme-literate" school of thought is that ongoing symptoms of Lyme means ongoing infection.  In the Lyme world these doctors are known as “Lyme-literate” doctors.  Like veterinarians, they believe that as long as symptoms persist, antibiotic treatment is warranted to kill off the ongoing infection. They aren't simple in their assessments of patients.  They also assess the patient’s overall health as well as the functioning of their immune system, to be sure that the patient can tolerate long term antibiotic treatment. Sometimes it is necessary to make a patient healthier before starting to attack the infection, for this infection is not an easy one to kill off, especially after it has invaded many systems in the body. Unfortunately this takes very little time for this nasty beast reproduces quickly.

Lyme-literate doctors believe that in order for a patient to improve, their infection needs to be addressed. Longer antibiotic treatment, they feel will increase the chances for conquering the infection, which alone will improve the health of the patient. This is their goal. Many a patient, including myself, have been successfully treated and over time serious and debilitating symptoms have lessened or been eradicated.

It is also common knowledge that co-infections go along with Lyme Disease.  Many of these infections may make a patient equally as sick, if not more so.  When symptoms persist even after treatment, Lyme-literate doctors will test and address possible co-infections, if not done at the same time as treating Borrellia (lyme infection). (to be continued....)

The illustration above is done by Hannah McMillen and the figure drawing by Sarah Kate McMillen

(*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering their illnesses.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give up on living their life to the fullest extent possible.)