Melissa Kaplan's
Chronic Neuroimmune Diseases
Information on CFS, FM, MCS, Lyme Disease, Thyroid, and more...
Last updated February 27, 2004

I was very lucky when I first started my quest for a diagnosis. After firing the internist who so badly bungled my hypothyroid diagnosis and treatment, I only saw three other physicians before finding Jay Goldstein MD. I was also uncommonly lucky in that those three interim specialists (allergist, endocrinologist, and infectious tropical diseases) were respectful of me. They listened to my symptoms, puzzled over my test results (most of which were "within normal range") and at least appeared to seriously try to figure out what was going on. In the years since then, as I listened to the experiences of others who are ill, I have come to realize just how uncommon my experience was.

What needs to be understood is that, as time has marched on, there are an increasing number of laboratories and tests that are finding all sorts of abnormalities in patients like us. The fact that many of these tests aren't offered by the homogenized superlabs that have gobbled up other regional labs seems to make them less credible to many doctors, so they ignore diagnostic tools that are in fact available to them. Some other tests that have been around for awhile are laughably outdated, like California labs using Lyme tests developed based on eastern US and European organisms.

Many laboratory tests, especially for tick- and insect-borne microorganisms, are still in their relative infancy, with false negatives and "presumptive positives" the norm rather than the exception in addition to poorly understood vectors and routes of transmission. Adding to the problem is the fact since the microorganisms organisms do not appear in every blood, urine or spinal fluid sample taken from patients, single tests are inconclusive as far as providing concrete documentation from a pathology lab of the well-defined constellation of symptoms reported by the patient. Further compounding the situation is that bacteria, viruses, and other microorganisms have learned a great deal about adaptation and survival in the billions of years they have been around. They are far more complex than the simple tests and attitudes that represent the "best" of modern medicine, and are being increasingly implicated in diseases once though to have nothing to do with microorganisms. (To date, some forms of ulcers, heart disease, cancer, and multiple sclerosis have all been traced to microorganisms. How soon medicine has forgotten that ovarian cancer and MS were once dismissed as "hysterical" disorders.)

In the case of CFS, MCS, Lyme and many other clinically diagnosed diseases for which there is yet no indisputable cut-and-dried lab test, abnormal neurocognitive, MRI and SPECT test results support many of the symptoms reported by these patients. The latter procedures are quite expensive and so rarely recommended by fee-for-service physicians, and woe be the HMO patient who dares request such a test from their primary care physician.

Patients with hormone disorders, including acute thyroiditis, go through much the same thing, being told by their doctors that they must be fine because their test results are "within normal range". Apparently, for these doctors, looking at a piece of paper is more important than actually looking at and listening to the patient.

The Idiot Utterings
After years of navigating the health care field trying to find providers who "get it", patients have learned to recognize the idiots by the things they utter, often during their first meeting. The following idiot utterings have been related to me through the years, or heard mentioned in groups of people with CND, or reported in online CFS, chronic illness, Lyme and similar groups. For the sake of brevity and clarity, I have paraphrased some of the more commonly heard idiot utterings.

Idiocy such as what follows must be recognized for what it is: the failure of the doctor to find out what is wrong and work to help the patient, not the fault of the patient for getting sick to begin with and not getting better.

Psychiatrists

There are two types of people in the world: those who choose to be happy, and those who choose to be unhappy. You just have to decide which one you are going to be.

After reporting that my overall cognitive function improved during a course of penicillin taken for an abscessed tooth, one psychiatrist refused to prescribe penicillin, instead handed me a prescription for 30 sleeping pills. Another psychiatrist prescribed penicillin but, months later, after stating that he doesn't understand why penicillin helps me, once again tried to get me to stop the penicillin and start taking psychotropic drugs.

You aren't sick - it's just PTSD from when you were [raped, abused as a child, victim of a violent crime].

You can't believe what you read on the Internet.

Physicians

There are two types of people in the world: those who choose to be sick and those who choose not to be sick. You just have to decide which one you are.

Your test results are all within the normal range, so you aren't sick.

You have multiple chemical sensitivity. Go camping.

There is no Lyme in [pick any of the states in which Lyme have been reported].

Beat your chest like an orangutan. They beat their chests every day and look how lively they are.

Your blood counts are off so it must be a computer error.

You're as healthy as a [horse, 20-year old or any age a decade or more more younger than you or your doctor is]; you just think you don't feel well.

You just have to learn to live with it. (If one has one or two symptoms, okay, sure, maybe, but when you have 90+% of the clinical diagnosis symptoms lists?)

You're not a doctor - you don't know how you feel.

You aren't sick - it's just PTSD from when you were [raped, abused as a child, victim of a violent crime]

You can't believe what you read on the Internet.

Support groups make people sicker.

...you don't have Lyme. People don't get Lyme. I think you're just depressed because you weren't able to get pregnant.

You don't have Lyme. Lyme disease is a myth. Besides, it's not true that people get it back east.

Neurologists

You are having small seizures but the machines are very sensitive so it doesn't matter.

You aren't sick - it's just PTSD from when you were [raped, abused as a child, victim of a violent crime].

I'm sorry to tell you, but antibiotics are just a placebo.

You just have to learn to live with it. (If one has one or two symptoms, okay, sure, maybe, but when you have 90+% of the clinical diagnosis symptoms lists?)

You can't believe what you read on the Internet.

Public Health Department Physicians & Researchers

A positive diagnosis for Lyme includes the appearance of a bulls-eye rash at least 5 mm in diameter. (Many Lyme cases never get a rash, and many of those who do have bulls-eyes smaller than 5 mm.)

You just have to learn to live with it. (If one has one or two symptoms, okay, sure, maybe, but when you have 90+% of the clinical diagnosis symptoms lists?)

Nutritionists

Eat only organic foods.

Eat only organic vegan.

Chiropractors

You just have a subluxation.

You must forgive anyone who has ever hurt you, then you will be well.

Friends, Family & Coworkers

If you hadn't've [taken that job, worked so hard, taken that trip, gotten married, gotten divorced, taken that promotion, not taken that promotion, etc.], you wouldn't have gotten sick.

You're as healthy as a [horse, 20-year old or any age a decade or more more younger than the speaker is]; you just think you don't feel well.

You just have to learn to live with it. (If one has one or two symptoms, okay, sure, maybe, but when you have 90+% of the clinical diagnosis symptoms lists?)

Universal Idiocies
Spoken not only by health care practitioners, family, friends and coworkers, but by kindly strangers and others we meet.

But you look so good!

You're just depressed.

You just need to reduce stress and make some time for yourself.

You just need to get out more and exercise regularly.

If you had a positive mental attitude, you'd wouldn't feel sick.

It's all in your head.

I wish I could stay home all the time and do whatever I wanted to.

You could get better if you really wanted to.

Everyone gets [tired, forgetful, headaches, muscle and joint aches] - you're just working too hard/getting older.

When was the last time you had sex?

You just need a boyfriend. (Why aren't male patients told they need a girlfriend?)

Did you just break up with your boyfriend/get divorced?

Why don't you [take up a hobby; get a pet; go hiking; take an aerobics class]?

And people wonder why we are so often cranky...

Silly Things TBI Researchers and Public Health Agencies Say

Activism

Disability

Pain

Books

Drugs

Pets

Chemical Sensitivity

Finding Support/Doctors/Attorneys

Resources