Monday, October 21, 2013

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

Part Twelve: Know What Kind of Care You Want: Giving In or Fighting On

Lyme-literate doctors do not consider most local hospital labs to have the proper equipment or expertise needed to accurately test for tick-borne illnesses. More reliable tests for Lyme Disease and its co-infections are made available through special labs such as Igenex, Mayo Clinic and others. Tests, however, don’t tell the whole picture as there can be false positives as well as false negatives and must be carefully interpreted along with presenting issues and clinical history to determine a proper diagnosis. Tick-borne illnesses can have different strains and many times tests aren't sensitive enough to detect them all, so testing is not the end-all/be-all in the Lyme world.

Lyme tests are not usually used to monitor progress during and after treatment, though I understand that some tests are being developed for this purpose. Once tested positive for Lyme, a patient may test positive for Lyme for a long time to come, depending on the state of a person's immune system and whether or not it is recognizing and producing antibodies. As yet symptoms are typically used to determine the success of treatment, but can also be tricky, as while in treatment, patients often don’t feel well.

Regarding the conflict between the two divergent views regarding whether or not Chronic Lyme Disease exists, let me say that it is the patients that ultimately suffer the consequences along with some of the more dedicated Lyme-literate doctors. Not only do doctors disagree as to how to treat patients, they fight among themselves, often working to remove the Lyme-literate doctors from practice, as they do not follow the strict guidelines of the CDC (Center of Disease Control). Long term antibiotic treatment is NOT widely accepted among all doctors despite studies that show that lyme can mutate and hide from treatment, necessitating both longer term treatment, as well as creative pulsating regimens of antibiotics (not taking them everyday)  in order to trick Borelia to come out of hiding and then attacking it more effectively. High dose IV antibiotics may also be more effective in treating persistent infections in some patients.

Some Lyme-literate doctors, to avoid scrutiny, don’t accept insurance, making effective care more expensive and even cost prohibitive for the patient and some Lyme-literate doctors have faced high legal costs that can drive them out of their private practices. Some doctors under such scrutiny choose to quit treating Lyme and other tick-borne illnesses, at a terrible cost to their patients. Recently my Lyme-literate doctor of many years was forced to drop his Chronic Lyme Consult patients by his local hospital administration and I had to search a four state region to find a doctor willing to accept my insurance and continue to oversee my “out-of-the-mainstream-treatment” right in the middle of it. This posed extra medical risk to me, for it wasn't a treatment that I could safely quit “cold turkey” even if I chose to do so!

Patients often struggle with insurance companies as well, as some refuse coverage for treatment based on the strict guidelines of the CDC. Life insurances, however recognize Chronic Lyme Disease as a very real and life threatening illness, making life insurance expensive, if available at all! Sadly government and insurance companies make decisions that were formerly made only by the patient and their doctor. The CDC is under government control and as we all know, no government office is without political influence and possible corruption.

The CDC’s strict guidelines have also limited many patients from being diagnosed with Lyme and getting proper treatment. Collective efforts are being made by various Lyme-literate associations (ILADS, likely the most well known among them) to have Chronic Lyme Disease officially recognized as an existing illness and to allow doctors to treat this illness with long term antibiotics per their medical judgment for each individual patient and different states are in process of passing legislation to protect such Lyme-literate doctors who choose to treat Chronic Lyme patients. (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.)