Using the Internet for Medical Research, Part 1

A reader writes:

“The biggest thing I can stress to you is to educate yourself wisely about this illness – DO NOT SPEND TOO MUCH TIME ON THE INTERNET. IT WILL SCARE YOU TO DEATH AND ADD TO YOUR STRESS LEVEL.”

One of the biggest questions I ask myself on a daily basis is “how useful is the Internet for medical research?” I use the Internet almost every day to do research on Common Variable Immunodeficiency (CVID) and Chronic Urticaria. But a number of issues arise when one uses this fabulous global repository of information for research on idiopathic conditions. I will attempt to address some of these issues over the next week.

Issue #1: Does it really help to know everything you possibly can about your condition?

I tend to perseverate on the absolutely worst possible things that can happen to me with respect to any disease or symptom I have:  fevers often become West Nile Virus, a rash is Lyme disease, headaches… brain tumors. I know that there is always a broad variety of symptoms and disease trajectories for every possible illness, but I always assume the worst. I guess I figure that I can only be happily surprised if the worst doesn’t happen. And if the worst does happen? Hey, I can at least be smug in my hospice. 

Unfortunately yet inevitably, you will run across the most heinous potential outcomes for your particular issue. For CVID, I have a 50-fold increased risk of colorectal cancer (CRC) and 23-fold increased chance of lymphoma over the population as a whole. However, my doctor says that of the 75-100 patients with CVID that she has treated, none has had CRC and only a couple have progressed to lymphoma. Also, the literature is replete with references to a ghastly condition called splenomegaly, a condition where your spleen essentially turns into The Blob and begins to take over your entire body. There is absolutely nothing I can do to prevent this condition, so the benefit of losing nights of sleep worrying about possibly waking up someday with a giant spleen filling my gut is questionable. Certainly, focusing on the array of possible outcomes for a syndrome like CVID is not the healthiest thing for me right now.

I do focus on the broad range of potential treatments. I have been investigating enzyme therapy to assist my colon in digesting proteins better before they enter my bloodstream, reducing the amount of histamines in my diet, and even taking broad spectrum antibiotics to suppress possible h. pylori infection. Searching for a treatment gives me a purpose; it makes me feel like I am accomplishing something.

The vast and easily available information on the web fuels me every day to continue my journey down the idiopath. I try not to let it paralyze me with fear or dishearten me.  I look on the web because no one has yet provided me with any information that helps alleviate my symptoms. No one, no doctor, naturopath, parent, friend, acquaintance, or stranger. And since I am not willing to accept that I have to live with these accursed hives the rest of my life, I will use the Internet as my main source of  information until I have an answer. But the reader’s point is well taken: be selective in what you look for, be selective in your sources, and only search for what will help you.