DIY Medical Research

I have blogged here about my own journey with Ankylosing Spondilitis (AS).  When I was first diagnosed I jumped onto Google and the results were depressing.  Even with a couple of hours of searching I couldn’t seem to find a natural way to treat my condition and side effects of the drugs I read about looked dreadful.  My family, however, encouraged me to do real research, medical research, not just play around on google.  At first I was intimidated and daunted, but finally I got into the swing of it.  And boy am I glad I did!  It took a few months but eventually I discovered both the cause and a method of natural treatment for AS.

What I’ve done now is to write up how I did it, in step by step instructions, to help other people tackle their own research for medical condiions.  You may never find something as conclusive as I did, but you may be able to design your own treatment plan based on results from a number of animal studies and other theories about your condition.

Inspiration

Why do your own research?

  • Animal studies can be 30 years ahead of human studies – you may find ideas you can experiment with even though they are not established practise.
  • Practising doctors don’t have much time for research, and may not be up on the very latest discoveries.
  • There may well be published studies showing effective treatment for your condition, but they may have been dismissed by the medical establishment for inappropriate reasons, such as they don’t respect the individual reseacher because they’ve never heard of that person, or the method of treatment would cause the pharmalogical industry to lose money so they pressure doctors to ignore it.
  • You, because you have the most to gain, are likely to care a lot more and hence do a better and more thorough job of this than someone for whom it is a theoretical exercise.

Doing your own research can make a huge difference!

  • Dr Terry Wahls is a medical doctor in the US with multiple sclerosis.  She knew that animal studies are way ahead of human studies, so set out to comb the medical journals and find out all she could about her condition.  She found a correlation between certain nutrients and brain function, and designed for herself a diet that would cause her brain cells to work properly.  She translated mouse-sized dosages into human-sized meal portions, and experimented on herself.  She has, incredibly, gone from being bedridden with MS to being able to ride a bike and run.  She gave a TED talk which is fascinating.    If she can do it, so can you.  It was she who inspired me to do my own research and tackle my problems directly.
  • Research has helped me with managing my condition: ankylosing spondylitis (AS).  The standard line from rheumatologists here in Australia is that no-one knows what causes it, there is no effective treatment, though symptoms can be reduced significantly with drugs, which have some nasty side effects and are quite damaging to the body.  By doing my own research I discovered that there IS someone who has researched AS and published 65 research papers on the topic!  He found both cause and a method of treatment which is now helping me.  When I bring his research to the attention of the rheumatologists I see, they dismiss it and say it’s a coincidence that diet helps my condition.

Getting Started

Make time for research

I suggest you allocate an hour, maybe three or four times a week, to do some research.  You should probably think in terms of spending at least a year like this – it may seem like an awful lot of time, but a few hours a week for a year isn’t really vast, and in the end, it’s your life that’s on the line, and you may well turn up something that will help enormously.

Ask yourself questions

Get yourself a notebook, or start a file, and write down a few questions.  Plan to start with a handful of specific questions:

  • Get a general understanding of the mechanism of your condition.  What is known about it?  What characteristics are involved?  You probably already know a fair bit – jot down what you know, but don’t assume it’s correct.  Write a list of things you know about your condition that you should cross check.  And as you are researching and learn more, add to this list.  Create a list of confirmed items you know about it and a list of unconfirmed items.
  • Write down your research goals in the form of questions.  You probably want to know how to manage key symptoms, whether they can be prevented, what causes your condition, whether it can be cured…
  • Write a list of drugs and conventional treatments you know about, including what you are currently on, have been on etc.  For each of these you should find out how various doses affect people, their efficacy (how well they work), and what side effects are involved  Also check into long term effects of taking each drug.

As you research, add to your list of questions.  It may seem impossibly, overwhelmingly long, but don’t be put off by that.  Expect research to take a long time, and just slowly work your way through it.  At the start, aim to get a bit of an overview, a bit of info to start your answers to each question you have already.  Then pick an area to go into in depth.

Where to research

Pub Med is a website that publishes abstracts (summaries) from published research papers.  This is a great place to start.  If you find the abstract from an article that is interesting, note it down and make note of the authors too.  If an article is particularly interesting, find a way to read the entire article.

The Cochrane Library publishes reviews of medical research.

British Medical Journal is another place to look.

Universities are great because you can search for published articles without paying any fees, and you can generally read the whole article.  While I was researching, my sister, who was studying at Melbourne Uni, let me log in using her account.  She helped me find the correct webpage to enter my search terms, and from there I went solo.  If you know someone who works or studies at a university, who is prepared to let you use their account, this is a very helpful way to go.

Search online for medical journals that relate specifically to your condition or a group that your condition is a part of.  For instance, I checked out rheumatology journals.

Google and the internet in general is a good way to get broader information.  For example, to understand lactose and its presence in various dairy foods, I used google to gain a layperson’s knowledge, and then cross checked a few snippets of this new knowledge with published articles.  Remember that anything you read on the net may be invented, or written by someone who doesn’t know what they are talking about, so take it with a grain of salt, but it’s worthwhile because a lot of information has been translated into layperson’s language.

Research process

As you read abstracts and articles, you’ll probably find you don’t understand a lot of it.  Don’t worry about that.  Just let it wash over you, and trust that if there’s something interesting, it’ll stand out.  If you do find something that seems interesting, go back and read it a few more times, maybe look up a few of the words involved, and see if you can write your own version in normal English.  This will help you make sense of it.  Over time you’ll probably find you start to understand more, as you become more familiar with the terms used and the details of the condition.

So, as you search for articles, make notes the whole time.  If you find anything interesting, jot it down in your file, or copy over the entire abstract.  My dad, when researching, if he finds an abstract that is interesting, prints out the entire article to read later, while in the car or during other dead time.

If you find an article that shows promise, note down the authors and do a search for each of them individually, to see what other papers they have published on this topic.  This was what uncovered it for me.  I found an early article into the role of klebsiella in AS, and when I searched for other articles by the author, I not only turned up his much later research papers in which he had conclusively announced the cause of AS, but I also discovered that he had founded a website which was a forum for AS. This was a wonderful resource for me.  So check out your authors, both in published journals and on google.

As you read, you’ll come up with more questions.  Write them down.  Your list of questions may seem impossibly long.  Don’t lose heart.  Just plod.  Every now and then read over what you’ve written, letting your mind make new connections and ferret out new questions.  Write down theories for yourself, and then attempt to prove/disprove them.  Use your body as a human guinea pig.  If you find some ideas that are unlikely to be harmful to try out, give them a go, and keep notes and charts.

Keep a list of your search terms, and add to them as you find out new ones that help you.  For instance, my rheumatologist told me I had spondyloarthropathy, but as I searched, I came to understand that this was a newer term for ankylosing spondylitis, so I figured that research that had been around for a while would be under the old term.

Records

It’s also a good idea to keep a record of the state of your condition.  Starting with today, devise a system, ideally numerical, to give each day a rating.  That way you can rate your highs and lows.  You may get a picture over the period of a year or two.  And if you do find something, you can see if it really does impact you or if it’s just a placebo effect.  In your rating system, include a place to record items of interest.  For example, was there something that might have triggered this flare in symptoms?  Was there warning that it was coming?  Once you’ve established your rating system, go back over the past few years, and note down various events / symptoms relating to your condition. If it seems possible that diet is implicated, jot down what you eat.  If you are taking medications, note them down and the dosages and side effects.  The more detailed your records, the better your chances of tracking your progress accurately.  This will be helpful if you start experimenting on yourself.

Goodluck, happy researching, and please leave a comment here to let me know how you go, especially if you turn up something useful.

3 thoughts on “DIY Medical Research

  1. kateheskett

    Some good tips here. I’m just starting out on the self-experimentation route and I’ve created a simple SurveyMonkey survey for myself which correlates health statements with a numerical score.

    I can see the benefit of starting out with a diagnosis, rather than a syndrome, but in the end it’s all a matter of trial and elimination. Looking forward to following up some of your research sources in the future!

    Like

    Reply
  2. Pingback: Resources for AS – npoise

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