The process of figuring out why you're ill can be a roller-coaster ride that progresses from fear and desperation to hope, false hope, disappointment, restored hope, confusion, and finally to understanding, determination, and confidence in your own abilities.
Quest for a Diagnosis
When you’re ill, the only thought on your mind is becoming well again. When wellness never comes and illness becomes chronic, fear paralyzes all rational thought. Ultimately, desperation leads to a trip to the doctor’s office, where the quest for a diagnosis begins.
I know the process all too well. In medical school, I was taught the classic approach to diagnosis that most doctors use today.
It starts with a history focused on cataloging symptoms of illness. Next, a physical exam is performed to search for any physical signs of illness. From this information, possible diagnoses are considered. Labs and other diagnostic tests are ordered to confirm or dismiss different possibilities.
For most acute illnesses, such as acute pneumonia, a broken leg, or even something such as Ebola virus, this method works well. The symptoms are specific for a very limited number of possibilities, and targeted diagnostic tests quickly reveal the diagnosis. Treatment is immediate and specific.
With chronic illnesses, however, things get complicated. The symptoms of many, if not most, chronic illnesses are nonspecific. In other words, the symptoms that occur are common to many illnesses, but do not point to any one specific illness. Abnormal physical signs often do not show up until someone is very sick.
Without symptoms or signs to guide the next step, ordering labs is a shot in the dark. By default, most doctors end up taking the shotgun approach: pull the trigger, and see what falls. There are thousands of labs that can be ordered, but none of them are quite as specific or reliable as you might think. Most lab results end up being filed away as unremarkable.
Certain symptoms, such as neurological, cardiac, or intestinal symptoms, may trigger referral to a specialist. This, of course, incurs more lab tests and diagnostic procedures that add expense and waiting time. Often as not, these tests too are unremarkable. The most you can expect is reassurance that you don’t have MS, cancer, an impending heart attack, or some terrible autoimmune disease (yet).
All the while, you, the patient, end up entombed in the perpetual wait for a diagnosis — for without a diagnosis, treatment cannot begin. When a diagnosis never comes because all the labs and procedures are unremarkable, you ultimately get pinned with fibromyalgia or chronic fatigue syndrome — because nothing else fits.
And those labels won’t get you very far because they are classified as disorders, not true diagnoses. A true diagnosis can be defined by tests, and potential cures are available. A disorder is simply a name applied to a collection of symptoms for which the cause is unknown (at least by medical science), and “cure” simply doesn’t apply. Your doctor may offer prescriptions to alleviate symptoms, but little more.
Without a real diagnosis, you often end up being treated like a second-class citizen.
I know how it feels because I’ve been on both sides of the fence. As a physician, it’s frustrating not to be able to find anything, and it’s all too easy to focus that frustration back on the patient (it’s not my fault...it’s all in the patient’s head). As a patient, I’ve felt the heat of that frustration, but at the same time, felt helpless and desperate to find answers — ultimately it can erode the doctor-patient relationship.
The Lyme Test
The one test that people often turn to in hopes of changing that situation is the test for Lyme disease. A positive test means you have a real diagnosis and a potential cure. Hope is often pinned on that test being positive.
Most doctors, however, will not routinely order a test for Lyme disease unless you report a tick bite. Considering that most people with chronic Lyme disease don’t remember a tick bite, it is usually not part of the initial evaluation (unless you happen to ask for it).
Sooner or later, however, Lyme disease will come up as a possibility.
When it does, your doctor will likely order the screening test for Lyme disease (ELISA). If you have been sick for a while, this test may well be negative (even if you do have Lyme disease). With a negative test, your provider may refuse to go any further…in which case, you will probably end up searching for another provider.
If your medical provider happens to be a bit savvier, he or she will also order a Western blot for Lyme. The standard Western blot for Lyme that is run by many conventional labs, however, is missing several key bands (they were excluded years ago when a vaccine that ultimately didn’t work was being developed, but the bands were never put back in the test), so correct results are about 50/50 at best.
Also, microbial testing is geared toward diagnosing acute infection. If you’ve been sick for a while, your chances of a getting a positive test are even lower.
If the test is negative, you continue with a label of chronic fatigue or fibromyalgia (even though you may have Lyme disease). At that point, you become a real thorn in your medical provider’s side — a chronic complainer who never gets well.
If the test is positive, you may receive a short course of antibiotics lasting several weeks. While this may provide some benefit, it is unlikely to make you well. Few providers are willing to write for repeated or prolonged courses of antibiotics (they may be right on this one; there is no evidence that prolonged antibiotic therapy has any benefit for chronic Lyme disease).
Hope turns into false hope and disappointment.
Lyme Specialists
At this point, you may give up on the conventional medical community entirely and seek out someone with specialized knowledge. Hope for a treatable diagnosis is restored, whether you had a positive Lyme test or not, and the quest takes on a new direction.
Prepare to be overwhelmed, however. If your situation is disparate, your new medical provider will likely order a wide assortment of different tests to determine why you are ill. Often these tests provide useful information, but sometimes they just make things more confusing; the body is extremely complex and we still don’t understand everything about how it works.
Also, be prepared to pull out your checkbook. Many of these tests are not recognized by the conventional medical community. Therefore, they are not covered by health insurance, and you will likely pay for them out of pocket. The bill can run into many thousands of dollars.
If you had a negative Lyme test before, but still feel you have chronic Lyme disease, a blood sample sent to IGeneX labs may be able to prove you right (for a cost of about $600). The test, however, is only 70% good at best and is specific for Borrelia burgdorferi; it does not test for other species of Borrelia.
If that test is positive, you may also decide to test for “coinfections” (for an additional cost). Whatever microbes the testing turns up, however, may just be scratching the surface — there are many more unknowns than knowns, and all forms of testing are far from being absolute. You may still have the microbe being tested for, even if testing is negative.
By the end of it all, you will have accumulated a huge amount of information about different functions in your body and different microbes that may be present, but unless you have a provider who truly understands a holistic approach to recovery, you may end up more confused than anything else.
Use caution as you proceed further. The common practice of independently treating each lab abnormality and each microbe that turns up is painstakingly difficult — it can work, but it’s very complicated and expensive.
To get your life back, you must address the whole as well as the individual parts.
Diagnosis from a Holistic Perspective
Stop... take a deep breath... let it out slowly.
It is possible to overcome chronic Lyme disease without spending thousands of dollars on testing and flying across the country to see a specialist.
The process of gathering information needn’t be complicated or frustrating. It’s just a matter of putting things in perspective.
Certain types of testing can be important, but the success of your recovery does not hinge on any one test. In fact, you could bypass lab testing altogether and your recovery would likely progress just fine.
This is especially true of microbe testing. The current state of microbe testing, especially for chronic infections with stealth microbes, is limited at best. It is not uncommon for someone to be infected with Borrelia, have all the symptoms of chronic Lyme disease, but test negative for Borrelia. It’s just as possible to have all the symptoms of chronic Lyme disease, but not have Borrelia at all — many stealth microbes have characteristics like Borrelia.
There’s always more to it than just an infection with a microbe, however. It’s not uncommon for people to harbor Borrelia (and/or other stealth microbes) and not be sick at all. Something else must be present for chronic illness to occur.
That something is chronic immune dysfunction. It results from a combination of factors, both natural and unnatural. These factors are the system disruptors mentioned in Chapter 5. Sometimes the effects of system disruptors have been adding up for a while, and an infection from a tick bite tips the balance. Other times, Borrelia and/or other stealth microbes have been long present, but immune dysfunction and chronic illness doesn’t occur until the negative effects of system disruptors add up. Symptoms gradually appear and worsen over time.
With a holistic approach to diagnosis, the effects of system disruptors are considered just as much as any formal test results. Therefore, a holistic evaluation begins with an assessment of your health habits. The next chapter, Chapter 7, begins with a survey of your present health habits. It’s a reflection of the impact that system disruptors are having on the healing systems of your body. Other methods of self-assessment are also included in the chapter.
During your recovery, you will need to establish a relationship with one or more healthcare providers (if you haven’t already). A conventional healthcare provider can order labs and other tests to rule out the possibility of something other than Lyme disease. A doctor can also prescribe medications if needed. Medications are sometimes beneficial for controlling symptoms early in your recovery. You also need access to the medical system if you have an emergency. The guidelines in Chapter 8 will help you maintain positive relationship with the medical system. A description of different types of providers and specialists is also included.
There are literally thousands of different types of lab tests, most of which are not important for your recovery. You will need the basics, however. Chapter 9 provides guidelines on which labs offer the most benefit. A list of labs for defining immune dysfunction is also provided, along with explanations of specialized labs that a Lyme specialist may order. This type of testing is rarely essential for your recovery, however. Plenty of people have gotten well using a holistic approach to recovery without it.
You may not be able to resist the urge to test for microbes (we all want to know as much as we can), but please read the beginning of Chapter 10 thoroughly before jumping down that rabbit hole. Most people don’t require extensive microbe testing to get well (or any microbe testing, for that matter), but the current state of microbe testing is provided in the chapter for those who are interested.
Time to move forward with your recovery!