Using the Internet for Medical Research, Part 1

March 4, 2007 at 7:08 pm 4 comments

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.

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Entry filed under: Chronic Urticaria, Common Variable Immunodeficiency(CVID), cvid, Medical Research on the Internet, medicine.

The complexity of the body IVIG Success

4 Comments Add your own

  • 1. wrekehavoc  |  March 6, 2007 at 5:01 am

    i, too, have CVID, as does my brother. (the magic of genetics.) i’m not quite sure whether you saw an allergist or an immunologist, so please forgive my ignorance. but you should know that while there are lots of allergists around there, there aren’t a lot of immunologists out there. if you saw an immunologist and he/she couldn’t help you, i would humbly suggest seeing another one. you shouldn’t have to suffer so much.

    another thing i would point out is that CVID is kind of a giant umbrella term for a syndome that manifests itself in different ways in different people. i apparently have been a walking poster child for sinusitis (though i am just used to breathing this way and just chalked up my never-ending upper respiratory joy to the fact that i have young children and, well, they are walking petri dishes of illness 😉 and itch like crazy, due to psoraisis (which no one but my dermatologist could figure out for some stupid reason.) my brother, on the other hand, has had a ton of pneumonia, though he has been wildly healthy since starting treatment. some people have gastrointestinal issues. and so on. i’m sure you know that all already as you sound like you’ve done a lot of research. they have ongoing studies at NIH for CVID; if you lived closer to NIH, i would tell you to contact them, though perhaps they have a west coast researcher who works on that issue, too…

    but one thing i would also tell you, as one who has been dealing with this for a little while: the internet giveth and taketh away your sanity. be very careful. we all tend to focus on what our illness makes us more susceptible for; but i liken that to reading any of the potential side effects of any medication. you *can* have a greater likelihood of lymphomas, etc, just like you *can* develop liver problems from taking aspirin. it’s good to know in order to be aware of these things and be vigilant about your health, but it shouldn’t stop you dead in your tracks.

    and i am sure it won’t 🙂 stay well!

    http://wrekehavoc.wordpress.com

    Reply
  • 2. paula  |  March 31, 2007 at 12:16 am

    Its been a few weeks since you have a posted a message. I have had chronic hives since I was two months old. My mother had to cut off my baby shoes because my feet swelled so badly. Im from a sorta red neck family so I only saw the doctor once when I was about 8. I had trouble breathing…The doctor gave me a prescription for liquid benadryl and that was the only treatment I ever had…I am now 43 years old. I still get them :o) So, this is what has worked for me…I have found that if I take the Claritin or other newer anti-histamines that it doesn’t help and seems to make them worse…I keep children’s benadryl around the house for when its at its worst…I take just one or two teaspoons full and it seems to work…I carry benadryl cream with me and put it every where…it takes about 20 minutes to kick in….and last, but not least, water cures them…If I have hives lets say…all over my entire belly and thighs..I don’t bother with the benadryl cream…I just turn on the bath water, doesn’t seem to matter whether its cold or hot and get in with a book….for some reason…after twenty minutes or so…they don’t itch and they stop growing..when I am at work…I use a piece of ice from the cafeteria and put it directly on the hive..or I use a gel cold pack that I keep in the refrigerator…

    I found your site because I have a daughter who is 12 and her pulmonologist told us this week that she thinks she might have an immune deficiency. So, I was doing a little internet research… :o) I hope your hives are feeling better…

    Reply
  • 3. Anna  |  June 21, 2007 at 12:03 pm

    Hi there,

    I too have suffered from chronic hives. 5 years ago I went through 2 years of hives. It was horrible and no cause was found. Then they just magically went away. I have them again, although not nearly as bad as last time, and I thought I might have an autoimmune problem and was tested for everything. According to doctors, I’m healthy. I don’t really consider breaking out in a demonic itchy rash healthy, so I’m taking care of myself now and I just thought I could possibly help out. Since you mentioned that you have been doing a lot of research, anything I tell you might be redundant, but hey, I’ll give it a go.

    You might want to look to your digestive system for some answers. In all my research and I’ve done a ton, talks about how most everything we currently suffer from can be linked back to digestive troubles. For instance, if you suffer from an digestive enzyme deficiency or hydrochloric acid deficiency then your food doesn’t get digested very well and when food stays in there too long, your body reacts to it. Since you have an immune deficiency I would think that you are at a higher risk of having a reaction than most people simply because, as you said, it takes those T and B cells and overworks them and thus you get hives. I don’t really know much about immune deficiencies, but you might try and see if supplementing some enzymes or hydrochloric acid might help. Some people have what doctors lovingly call “leaky gut syndrome.” This is when the stomach lining has been damaged enough that undigested particles get into places they don’t belong and the immune system attacks them. Since you’ve been so ill most of your life, I’m sure you’ve taken your share of antibotics and other OTC medications. These are usually the cause of leaky gut syndrome and since you’ve probably take more medications than the average person, I would again submit that you would be at a higher risk. There is a lot you can do for these things, a little research I’m sure will help you there. Also, I would think that, considering your condition, that you would also be at a high risk for yeast overgrowth, otherwise known as Candida. People can have symptoms for years and not know they have Candida until they become really sick. Candida can certainly cause hives. If it is severe enough, it can take a few years to work back to a healthy state. Treatment, though, can be really simple. Basically you need to go on a anti-Candida diet and take some anti-fungal medications and back up your digestive system with probiotics(friendly bacteria). Natural anti-fungals would be better for you and they are just, if not more so, effective as prescriptions. Grapefruit seed extract and garlic are both very good anti-fungals. There are stronger ones out there in the herbal section, but you have to be very careful and probably would only take something stronger under the supervision of a doctor.
    There is a lot more I can share with you, but since I don’t know what you know, I’ll leave it at that. Email me if you think I can be of any further help.

    Reply
  • 4. Anna  |  June 21, 2007 at 12:46 pm

    I forgot one more thing. The vitamin Quercetin has proven very effective at being a histamine inhibitor and at stablizing those crazy mast cells that are overreacting to something in your body.

    Reply

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