People with Chronic Lyme Disease feel terrible. Imagine feeling exhausted most of the time, having no energy. You hurt everywhere, especially in your joints. The pain can be severe. You may be nauseous every waking minute and eating takes effort. Brain fog is persistent, and you cannot concentrate. Headaches are a daily occurrence, with light and sound sensitivity that drives you away from people and into your home. Depression is pervasive, and sometimes ideas of suicide enter your thoughts. Neurological symptoms, such as tingling and numbness, and electrical, painful shocks travel up your arms and legs, coming and going. It is hard to get out of bed in the morning and function in daily life activities.
Besides feeling terrible and having to struggle to get from place to place, you go to one doctor after another who tells you there is nothing wrong because all the test results are negative. Then you are offered an antidepressant because it must be all in your head. Unfortunately these are bacterial and parasitic infections affecting different parts of the body, antidepressants are usually ineffective.
Later you are sent to a specialist, a rheumatologist or an infectious disease specialist, and they again do testing which is negative; therefore, again it is believed you don't have any disease. Instead of looking at the clinical picture being presented to them, these physicians say there is nothing wrong. It is implied that it is all in your head. Over and over again, this scenario plays out until you feel like you are going crazy.
Family members look at you like you're going insane, and your loved ones begin to turn away from you. However, you remain caught in this horrible cycle of feeling terrible, not able to function on a daily basis, and in pain most of the time. It is devastating in every which way *Physically, Emotionally, Spiritually, Mentally, and Financially. The emotional cost to a patient and their families is horrendous. How does an ill person participate in life? Many people with Chronic Lyme Disease are dependent on family and friends to take care of them, to prepare food for them, to do errands, to pick up their medicines, to call the doctor and arrange for appointments, to help with their children, if they have any. *Basically any activity healthy people take for granted.
Since health insurance will not pay for a problem that does not exist, the costs are extremely high. Not only must you pay for a health insurance policy and the attendant co-pays that go with it, you go to doctors who say nothing is wrong. Then you seek out, if you are lucky to find one, a Lyme-Literate provider who does not take your insurance. Most Lyme specialists have cash practices because they could not stay in business otherwise. It takes one to two hours in an initial visit to tease out the problems and begin to address them. At your primary doctor's office, you pay your co-pay, the doctor bills your insurance the remainder, and this doctor only spends five to ten minutes with you. How can anyone know what is going on in such a short period of time? It is not possible. Your story, your symptoms, how you live on a daily basis are important in diagnosing your illness and deciding on the first step in treatment.
"Western" vs "Eastern" Health Care
There are many differences between the way Western health care and Eastern health care deal with Lyme Disease and other co-infections. While most of the providers who practice in our current system fail to acknowledge Chronic Lyme Disease, it is often an acupuncturist or naturopathic physician that suggests the possibility of Chronic Lyme Disease to a person and gets them to begin looking for other providers who understand what they might be going through.
In an integrative practice, the best of both worlds are utilized in a blended way by using herbals, neutraceuticals, and antibiotics. Using nutrients and herbals, instead of drugs, can control many chronic conditions, as they have fewer side effects and are accepted by the body more readily. There are herbal tinctures specific to the treatment of Lyme and the co-infections that work well in combination with antibiotics. As well as other supplements utilized to help the body clear toxins from the bugs and support the lymph and liver system.
As a knowledgeable health care provider and Lyme Literate, I find it incomprehensible that the current medical system shuns and marginalizes people with Chronic Lyme Disease. The suffering this disease can cause exemplifies this is wrong and shows the need for a place those with Chronic Lyme Disease can find Solace, Support, and Respect, as well as treatment that moves them toward a healing state.