Lyme Files: The Diagnosis of Lies

It's not uncommon for anyone with a tick-borne illness to feel fatigue (and tired). This is why this symptom is most commonly plucked up and many, many people are told they have Chronic Fatigue Syndrome (CFS) and if there is pain attached, Fibromyalgia.

Actually, most people are just given both if they have one. Or you know. .whatever. They are interchangeable nonsense terms if there is not an identified condition underlying it.

Chronic Fatigue Syndrome (CFS)
CFS as a stand-alone diagnosis is a lie.

Chronic fatigue syndrome is a complicated disorder characterized by extreme fatigue that can't be explained by any underlying medical condition. The fatigue may worsen with physical or mental activity, but doesn't improve with rest.

The cause of chronic fatigue syndrome is unknown, although there are many theories — ranging from viral infections to psychological stress. Some experts believe chronic fatigue syndrome might be triggered by a combination of factors.

There's no single test to confirm a diagnosis of chronic fatigue syndrome. You may need a variety of medical tests to rule out other health problems that have similar symptoms. Treatment for chronic fatigue syndrome focuses on symptom relief. - Per the mayoclinic.org

There is really no such thing. It's merely a medical term for "tired" that allows the medical community to deal with a patient who otherwise cannot be "figured out." Since testing is so inaccurate for tick-borne illnesses and treatment guidelines are often not good enough to complete get rid of an infection - people walk around believe they have this condition called CFS.

People who have CFS for real have an underlying cause, for example:

• A military person who had to be on high alert in a stressful situation for months or years at a time has CFS. The body can only stay on heightened alert for a certain period of time before it no longer can function. 
• People who tons of anxiety can also have CFS because of the alert state an anxiety disorder can cause. If your body releases chemicals telling you to be paniced 24/7, your body will start to become fatigued.

In both of these cases, CFS is a secondary diagnosis. There is an underlying cause.

If a doctor tries to dismiss you with a diagnosis of "CFS" without any other underlying reason - you need to find another doctor.

Fibromyalgia
If someone has told you that you have fibromyalgia, you need to ask one question: Why?

Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.

Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event. - Per the mayoclinic.org

If, for example, you one broke your leg really, really badly one time and you have pain from time to time - that's fibromyalgia. If you went through chemo or other tramua and a doctor tells you that you have fibromyalgia, that's. . .ok.

Fibromyalgia without an underlying condition is a doctor giving up on any type of testing or treatment for any condition.

Don't Let It Be
As liberating as having words from someone who went to medical school that mean what you feel, it is not useful if there is no underlying condition. Don't be fooled.

I had all these diagnoses attached to my files. To me, they felt like a code from one doctor to another to treat me for depression and tell me to work out more. It was code for "problem child" and "attention seeker."

My exhaustion and pain were merely unknown to any doctor I saw. To this day, I have both because my adrenal glands are malfunctioning which covers CFS and fibromyalgia because the amount of damage all these parasites, fungi and bacterial did to my system.

The Fight for Words
Because Chronic Lyme is not an politically (and thusly medically) accepted term or diagnosis, the community with the ability to function along with those few doctors who believe there is a real problem with how we deal with tick-borne illnesses are fighting for a new term called Post-treatment Lyme Disease Syndrome (PTLDS)

The CDC current states:

It is not uncommon for patients treated for Lyme disease with a recommended 2 to 4 week course of antibiotics to have lingering symptoms of fatigue, pain, or joint and muscle aches at the time they finish treatment. In a small percentage of cases, these symptoms can last for more than 6 months. Although sometimes called "chronic Lyme disease," this condition is properly known as "Post-treatment Lyme Disease Syndrome" (PTLDS). 

The exact cause of PTLDS is not yet known. Most medical experts believe that the lingering symptoms are the result of residual damage to tissues and the immune system that occurred during the infection. Similar complications and "auto–immune" responses are known to occur following other infections, including Campylobacter (Guillain-Barre syndrome), Chlamydia (Reiter's syndrome), and Strep throat (rheumatic heart disease). In contrast, some health care providers tell patients that these symptoms reflect persistent infection with Borrelia burgdorferi. Recent animal studies have given rise to questions that require further research. Clinical studies are ongoing to determine the cause of PTLDS in humans. - Post-Treatment Lyme Disease Syndrome

Ideally - one day, there will be accurate testing and the studies and research toward tick-borne illnesses will greatly reduce the use of CFS or fibromyalgia as a primary diagnosis.