Patients Googling Their Way To Health

Kudos to Google! I may never have deciphered what was wrong with me without the aid of Google search.

In spite of having read the Merck Manual from front to back twice and amassing a small medical library of my own, I have to credit my key breakthroughs in diagnosis to going online and googling specific medical terminology to learn the significance of test findings. Google results not only brought up websites that defined the terms but also brought up doctors’ abstracts of conditions related to the subject terminology. This is how I was able to piece together and make sense of all the seemingly disparate puzzle pieces involved in diagnosis.

A second source that gave me the reassurance I needed to pursue my belief that the multitude of things wrong with me were interrelated was “House,” the television show about what it takes to be a good diagnostician.

While in pursuit of a comprehensive diagnosis, some followers suggested sites like Diagnose-Me.com. The site was established in late 2002 as a doctor-programmer collaboration to provide a more in-depth evaluation of patient symptoms than a rushed in-person doctor consultation. (This just goes to show that even doctors are aware of the paralyzing limitations of our present health care system.)

Upon completing a questionnaire online, customers can choose reports ranging in cost from $0 to $77 depending upon the amount of doctor involvement.

A few years ago, I completed the questionnaire and received a report that gave a risk assessment for each of a long list of possible ailments based on reported symptoms. The report issued an advisory to seek professional medical advice for any conditions that may be life threatening. I found the report rudimentary in its computerized linear correlation of symptoms with possible diseases.

Rather than giving a comprehensive diagnosis, it rattled off a list of possible maladies based on each listed symptom individually. I opted for the free report. The more in-depth sample report gave lifestyle, diet and supplemental recommendations for many of the example patient’s possible ailments or conditions.

I always wondered why no one had developed computer software that could analyze symptoms and rule out those diseases that don’t fit all of the patient’s symptoms.

I found the problem with diagnosis is that so many disparate diseases have the same symptoms except for one or two key determining factors. Ruling out maladies that don’t fit all of the patients main symptoms comes up all the time on shows like “House.” Based on a list of patient’s symptoms, Dr. House’s proteges postulate the patient could have this or that except such and such disease doesn’t have x as a symptom, which the patient has, so they rule that malady out.

What the show demonstrates is that a good diagnostician doesn’t just rely on the science for diagnosis. Dr. House always saves the day toward the end of the show because he’ll see something, like a plumber scratching his balls, which reminds him of herpes. This sets off a light bulb about the diagnosis for his patient that he’s been struggling for. He’ll realize that herpes viruses cause nerve damage to various parts of the body; then treats the patient with antiviral medication. The patient recovers and goes on to live a happy, healthy life.

I had this same sort of light bulb moment this week. I started thinking way back to childhood about my health problems. I’ve always suffered severe constipation and had to have enemas to have bowel movements from the time I can remember — like three years old.

Doctors were as helpful then as they’ve been today. They recommend stool softeners, suppositories, laxatives and fiber. All the fiber did was cause painful gas, bloating and abdominal distension. The suppositories just melted uneventfully. Doctors all thought the problem insignificant. Some even laughed at how constipated I was upon digital examination. After all, everyone has constipation!

According to doctors, everyone has everything, so it must all be normal. That is, in fact, the standard upon which normal test findings are based. If the predominance of the population has it, it’s normal. And as our population continues to become sicker from eating unhealthy processed, sugar-laden foods, the bell curve of acceptable “normal” results widens. I ask, “If everyone gets ebola, will having ebola virus be considered normal, too?”

Wouldn’t you like a job in which you could just dismiss your customer’s complaints as something everyone endures so you wouldn’t have to fix anything? I bet you wouldn’t have many clients after a while. Yet doctors still thrive with loads of patients who never get cured and keep coming back because they don’t know what else to do.

We’re brainwashed to consult the experts. I believe the statement is nothing more than an attempt to push liability onto someone else in this highly litigious society.

We’re a litigious society because our lawmakers are in bed with those who finance their re-election campaigns. The only way to get justice in the U.S. is through a private costly lawsuit. We don’t have the laws or teeth behind the laws we have to protect the public. Case in point: the subprime mortgage fiasco and resultant credit crisis which led to the non-sensical bailout. Congress should have given the money directly to the consumers as in trickle up economics. But I digress.

If you read my last blog, The Story #18, you’ll see I’ve concluded that the root cause of my illness is a lack of or damaged nerve cells in my intestinal muscles needed to keep stool moving to the anus. This is likely Hirschsprung’s disease, which I’ve had since birth. My lack of intestinal motility due to damaged nerve cells could also be caused by volvulus, or a twisting of my intestines causing a partial blockage, which is cutting off the blood supply to my colon and depriving the nerve cells of the oxygen they need to function properly. The damage to my nerve cells could also be due to my HHV-6 herpes activated viral infection, which causes demyelination of nerve cells.

Damaged nerve cells throughout my body explains multiple ailments including the degeneration of my spine and CNS, which controls all bodily functions. The build up of fecal matter and toxins in my gut due to lack of motility due to damaged nerve cells is causing multiple infections, and that has a snowball effect on the immune system. The whole thing is wreaking havoc on my ability to absorb nutrients…etc. Viral infection affecting my nerve cells explains everything.

Now I just have to find a doctor who knows anything about treating viral infections and convince him of my findings. Do you think it would help if I had a medical degree? Do you think there are any doctors willing to help a pauper without medical insurance and whose egos won’t get too bruised by the fact that a layperson came up with the correct diagnosis? Don’t forget that doctors’ failure to diagnose and treat me in the first place is the reason I am now disabled and broke.

I can’t count the number of doctors who shut down the minute I discussed something outside of their limited scope of knowledge or pointed out a positive test result from a test they didn’t order themselves. The whole appointment became about why hadn’t they thought to order that test. Forget the fact that they filed my test reports without reading or analyzing them or that they didn’t put two seconds into thinking about what was causing my illness or even believing I was that ill at all. To them I was just another patient with inexplicable idiopathic illness.

Where’s the passion in medicine? The curiosity? The thing that may have motivated doctors to go into the profession in the first place? It got drenched with the realization that all that mattered in life was money. And when money to maintain your Harry Angstrom lifestyle is your motivating factor for being, it’s no wonder that doctors stopped putting forth any effort to do anything for their patients besides collecting fees.

Health care is our next big meltdown. It’s presently operating under the same premise that brought us the subprime mortgage fiasco and current credit crisis. Everything was about making money rather than about providing a service or product.

I’d like to try to change this direction by bringing my story to the public as a representation of what tens of thousands of people are going through in our great nation as if they were members of a secret underground. Like me, they lack the health and vitality and funds needed to make an effective statement. So they suffer in silence while knowing onlookers who feel helpless to act do nothing.

I don’t care about privacy. I have nothing left to lose and everything to gain by telling my story.

We’ll never solve the health care crisis without reforming how doctors practice medicine. Reform that deals solely with medical care funding and insurance is like giving the banks and lending institutions money without adjusting the laws that regulate how they practice lending. What did the banks do with the bailout money? Shored up their balance sheets and paid shareholders. Now Congress is surprised that the shysters who perpetrated monetary fraud lacked scruples and ethics. Come on.

People right away criticize my motives as simply advocating universal health care. Wrong. I’m for real, actual health care regardless of who pays for it. But if you ask me, if health care is a right, it should be a non-profit, self-sustaining business.

Presently, our system is largely based on shuffling patients from doctor to doctor. Few patients benefit. Many patients may think they benefit under our current system when they are really only being prescribed medicines that mask their symptoms so they feel better now. But the repercussions from taking these medicines will become apparent in later years because the root cause of disease was never addressed. What’s wrong is still going on undetected, undiagnosed and wreaking eventual disabling havoc. I know. It happened to me, and it’s happening to all those other people you can read about on the hundreds of medical self-help forums on the internet.

Thank God for Google Search! It helped me figure out what was causing my spine and central nervous system to degenerate. It’s helping me keep abreast of the latest treatments, clinical studies and on-going medical research. It put followers in touch with me for moral support. It helped me find patient advocacy groups, who tried to help me find competent medical help.

All I need now is the Stephen Colbert bump to progress.

~ by doctorblue on February 3, 2009.