Last IV treatment with a visit from Mona's friend Yael, who threw a fundraiser to help pay for some of Mona's medical bills in May 2011

After six years of wrestling with one of the most controversial and debilitating illnesses in modern history, Mona Motwani has successfully beat Lyme disease. She walks away from the crippling experience not only as a more enduring woman, but also gulping for air as she drowns in a pool of medical debt.

Mona is not alone as this is normalcy as far as patients in the United States with Lyme disease are concerned. An alleged 87 percent of them have exponential medical debt, according to Lyme Project and ILADS (International Lyme and Associated Disease Society).

Mona was interviewed for “50 Women” in April 2011 where her devastating struggle with Lyme will be recounted in a first person story. Lyme disease is one of the most commonly misdiagnosed diseases in the United States as the IDSA ( Infectious Disease Society of America)  refuses to recognize that it has the potential to progress into late stage. The definition and treatment standards of Lyme, which all major insurance companies follow, claim it can be treated in 28 days. For late stage Lyme patients, this is not adequate treatment. Unfortunately for them, most medical facilities are not even equipped to test for it and most physicians, despite the objective and measurable presence of spirochete bacteria Borrelia Burgdorferi, refuse to admit that it exists. Patients are misdiagnosed and often forced to shoulder the burden of their own medical expenses since most effective Lyme treatments are holistic in nature and not covered by insurance carriers.

“The IDSA or Infectious Disease Society of America claims CLD (chronic lyme disease) doesn’t exist. This allows the western health care system to deny diagnosis and treatment. It allows insurance companies to refuse to pay for treatment and to go after providers who treat CLD and ruin them by threatening their medical licenses and livelihood. Insurance companies have sued some doctors for over prescribing antibiotics and won!” explained Mara Williams, RN, MSN, ANP-BC and author of the bestselling book “Natures Dirty Needle” in a previous interview for 50womenblog.org.

“When someone with CLD is forced to deal with this part of the system, they are told it is all in their head and offered antidepressants. The way most providers practice allows them 5-10 minutes with a patient per visit. Someone with CLD requires much more intensive time and intervention. Most providers don’t want complex patients so frequently a patient will be given a basic Antibody test for Lyme which is not reliable and usually is negative even when someone has Lyme.  If patients were correctly assessed initially they would be less sick and easier to treat and cure. If ER docs had better knowledge of Lyme they could treat more acute cases, prevent CLD and the years of suffering and years of money spent on care that wouldn’t be needed”.

Late stage Lyme disease or CLD is defined as an infectious bacterial tick borne disease that is transmitted through the bite of a tick. Perhaps this sounds easily reversible, but when the tick bite is missed and a person goes months or even years without knowing that they have been infected, the disease enters its late disseminated stages, infecting many if not all systems of the body: limbic, neurological, physical, psychiatric, cardiac and more. At this point, it is enigmatic, painful, and expensive to treat.

Individuals harboring Lyme disease for extended time periods become incredibly ill and at this stage will often require years of treatment. By the time a Lyme patient reaches late stage- the disease is embedded in their tissue and strongly affects their central nervous system and brain.

Mona discusses its debilitating effects in her previous article.

Mona was insured with Blue Shield of California and was a successful Civil Rights attorney prior to having to leave her job after the disease disabled her several years ago. She is now 34 years old and her medical debt from treating Lyme disease is hundreds of thousands of dollars.
Time after time, Blue Shield of California denied coverage to Mona simply because they rely on the IDSA 28 day treatment standard of Lyme disease.

Using credit cards, her family’s retirement funds and other methods of payment, Mona’s medical debt totals over $200,000 dollars from the last five years of treating