Archive for March, 2007

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.


March 4, 2007 at 7:08 pm 4 comments

The complexity of the body

In reading about chronic hives over the past couple of weeks, I discovered that somewhere between 25-50% of all incidents are related to autoimmune responses. The body actually attacks itself. What baffled me was that I have a genetic immunodeficiency; how do I produce an unchecked immune response against myself if my body has a hard time suiting up against a bacterium?

The Primary Immunodeficiency Foundation  has produced a pamphlet that describes how this is possible. Essentially, the immune system is made up of multiple layers of defenses. I don’t produce any significant amounts of immunoglobulin (antibodies), but my immune system also consists of T-cells and B-cells that fight potentially dangerous invaders like bacteria and viruses. Apparently, these cells tend to proliferate when antibodies are in short supply. Some times, too many are produced and they can go a little haywire becoming sensitive to substances that they would normally ignore. In my case, it may be that my B and T cells may be attacking my skin cells. Autoimmune responses like this are not uncommon. Diseases such as MS, lupus and rheumatoid arthritis are all believed to be autoimmune responses.  When the body’s immune system is out of balance, it can overcompensate with the resources it has.

I may or may not have autoimmune hives (urticaria) but this example illustrates the complexity of the body. The search for answers to chronic, serious and idiopathic symptoms must always account for this complexity. Any symptom or set of symptoms can be the result of any number of competing or cooperating underlying causes. Symptoms may also be the result of biological processes that seem on the surface contradictory or logically unrelated to other diagnoses.

Recent studies have found that some autoimmune diseases may be the result of concurrent mutations in as many as 30 genes. Keep this in mind as you seek simple answers to your medical issues.  The idiopath is paved in shades of grey.

March 2, 2007 at 4:53 am Leave a comment

March 2007
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