CureTogether Blog » Patient Stories

Crowdsourced Patient Experience

Alexandra Carmichael — Thu, 16 Sep 2010 03:27:42 +0000

This is for you.

As part of our entry for the Ashoka Changemakers’/Amgen Foundation Patients| Choices| Empowerment competition, we put together this video with stories from some of our members.

It’s to thank you and show you how people are being helped and how we’re moving forward. I hope you enjoy it! Please also feel free to enter a comment at the Ashoka site to show your support for CureTogether winning the competition. Thanks!!

Have You Built Your Health Decision Tree?

Alexandra Carmichael — Thu, 04 Mar 2010 00:11:40 +0000

The first step in building your decision tree.

I’m going to my first book launch party tomorrow. I’m a bit nervous.

It’s for Thomas Goetz’s book The Decision Tree, which was just released. His book and blog carry great insight into the future of health – personalization, quantification, and smarter choices. He even created a nifty app on Wired’s website where you can build your own decision tree.

Why am I nervous? Well, the book includes my own personal decision tree (see below), based on my 10-year battle with chronic pain. So now everyone who reads it will know my story. Which is scary but also fantastic, because I think hearing people’s stories is such an important part of healing ourselves that is often missing in traditional doctor-patient healthcare.

Kudos to Thomas for putting personal, informed, patient choice at the forefront of health. I’m glad he wrote the book, and I encourage you to read it!

Bipolar and OCD Run Together

Alexandra Carmichael — Mon, 14 Dec 2009 18:38:44 +0000

A playful placement of pills. (Credit: me and the sysop) .

“I’m using this with my cognitive therapist and it’s… amazing.”

I got this email from Christopher, a CureTogether member with Bipolar Disorder:

“I have never found a more useful “biofeedback” tool. It has helped me enormously in understanding my Bipolar I condition… You’ve seriously changed my life.”

Words like Christopher’s inspire us to keep doing the work we’re doing, and putting out discoveries like today’s. So here goes.

We found a strong association between Bipolar Disorder and Obsessive-Compulsive Disorder (OCD), which independent studies published in established journals also confirm. In graphical form:
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People at CureTogether who report Bipolar Disorder are five times more likely to report Obsessive-Compulsive Disorder than members with no Bipolar Disorder. This comes from a study of 464 people sharing data online for the past year.

For details on this finding and how it matches up with other studies, read on…

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Details of the CureTogether Bipolar-OCD Finding

Among 30 people reporting Bipolar Disorder in this study, 14 (46.7%) reported also having Obsessive-compulsive Disorder, and the remaining 16 specifically reported not having Obsessive-compulsive Disorder.

Among 434 people reporting “No Bipolar Disorder” in this study, 44 (10.1%) reported having Obsessive-compulsive Disorder, and the remaining 390 people specifically reported not having Obsessive-compulsive Disorder.

This 46.7% vs. 10.1% difference represents a statistically significant relative risk of 4.6, with a 99% confidence interval of 2.9 – 7.4.
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Other Bipolar-OCD Research

The importance of this finding is that using only self-reported data, we have found an association between bipolar disorder and OCD that has previously been explored only in clinical studies such as the following:

(Credit: Chuck Falzone)

1. Bipolar and OCD are co-morbid in children and adolescents – http://www.ncbi.nlm.nih.gov/pubmed/17822342

2. OCD onset may precede Bipolar onset in women with the co-morbidity – http://www.ncbi.nlm.nih.gov/pubmed/15962140

3. A longitudinal study of 591 patients found significant co-morbidity of OCD and Bipolar – http://www.ncbi.nlm.nih.gov/pubmed/15711895

Self-Reported Data at CureTogether

CureTogether has been called “Yelp for health.” It is a collaboration of people from around the world volunteering to solve real problems in chronic conditions.

People self-report and rate symptoms and treatments for over 410 conditions. The top conditions at CureTogether are depression, anxiety, migraine, back pain, and vulvodynia.

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Take a peek at the top-rated:

- Bipolar Disorder Treatments

- OCD Symptoms

- OCD Treatments

I, Medicine: Predictive Biometrics and Health Optimization

Alexandra Carmichael — Sun, 06 Dec 2009 19:57:11 +0000

This is a guest post from Bard Canning, a CureTogether member from Australia and self-tracker who has made some interesting discoveries about his own health. Thanks Bard for sharing your thoughts, perspective, and a link to your own self-tracking system!

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The most important online applications to be developed since the birth of the Internet are less than a decade away, yet they remain largely off the radar of investors and web-developers. These applications are optimizers for the most important thing we have – our health.

Here’s why…

A couple of years ago IBM released a report that stated that by 2011 the total amount of data in the world may be doubling every eleven hours. I believe that this prediction will be more than met by the surge in self-tracking devices that will be released over the coming years.

The spread of ubiquitous micro-trackers will make health data collection cheaper and easier. The self-tracking hardware and software will no doubt be unified by cloud computing and result in a ‘perfect storm’ of accessible and highly effective health optimizers.

It’s an important convergence of technology and timing.

Imagine if the computer industry was nothing but repairmen that tried to salvage PCs in the last stages of severe virus infections. It would be a pretty bleak situation, yet that is the current state of the health-care system. For the most part, people are only treated once they have become sick and even then with largely disappointing results.

The computer industry, on the other hand, has an endless supply of optimization tools that improve efficiency and user experience long before the computer has become ‘sick’. Defraggers, registry cleaners and driver updaters are just some of the tools in use.

I believe that the coming decade will bring with it a surge in online self-optimization applications. I also believe that the results for people’s health will go far beyond current expectations.

My personal story is that I have an hereditary immunological condition that I have struggled with for some years. Like many people that I have met, I felt dissatisfied with the health-care system and decided to take matters into my own hands to try and improve my health.

I did manage to track down the cause of my health problems and have since made great progress in my treatment. At the same time I developed my own self-quantification system that allowed me greater insight into how the medications and lifestyle choices I was taking were affecting my health.

What fascinated me was that when I entered one month’s worth of self-tracking data into my system it reached the same result that had taken me over a year to find through old-fashioned trial and error. This translated to a 20-fold improvement in efficiency.

I did feel disappointment that I hadn’t developed this tool years ago but also became excited about what discoveries it would lead me to next. I had become acutely aware of the potential of self-quantification tools.

Our very experience of life is filtered through our current state of physical and mental health. Having less than optimal health fundamentally affects the quality of our lives.

Right now our health-care system is a largely disorganized, anemic beast that advances with painful slowness and inefficiency.

Thankfully, as medicine is gradually transformed into an information technology, we will see an exponential acceleration in advancement.

My concept is to take it one step further and open up our medical laboratories to encompass the great experiment that is the human race. Every day billions of people test out drugs and treatments in their own homes, but this data is largely lost, or relegated to unreliable analogies. I am committed to changing that.

Humans are quite bad at deciphering patterns over time. We can be good at recognizing patterns over short periods but over days or weeks our perception becomes extremely poor. We often miss obvious connections with our health while simultaneously making false positives. For example, someone might swear that a placebo treatment such as homeopathy cured their hay-fever while completely ignoring the fact that three days of rain had washed away the pollen from the air.

A personal biometrics system sees through all the noise and is unswayed by personal biases or wish-thinking. It also has the potential to negate or eliminate the placebo effect from subjective results but this is a deeper area that requires some clever mathematics and development.

The problem with a condition like mine (and conditions such as chronic pain, chronic fatigue, fybromyalgia, migraine, and so on) is that they usually involve multiple organs and can be extremely difficult to diagnose and treat effectively. They can affect the homeostasis of the body’s nervous system leading to debilitating allostasis. I have my own theories about the mechanisms behind many of these conditions, but one man’s opinion is merely conjecture and insignificant in the grand scheme of things.

What is significant are measurable observations and results about people’s health gained from multiple data points. Yes, it is true that the self-quantification concept revolves around gathering self-reporting data, which can be notoriously unreliable from a medical research stand-point, but the era of the Internet brings with it a new paradigm – truly massive numbers. Massive numbers of individuals from which to gather data, and, even more excitingly, massive amounts of data gathered on each individual.

As we can see with sites like Curetogether.com, the results we obtain can be surprisingly accurate and comparable to those obtained through more traditional means.

I believe that in the next decade people will become increasingly comfortable with the idea of self-quantification. In fact, I believe that this paradigm-shift is already happening around us. If you don’t believe me, if you think that people will not be comfortable giving up so much personal information into the cloud, then I remind you that the same contention was raised about Gmail when it was first released.

The truth is, even though it sounds dreadful to have an email service that scans your emails for personalized keyword advertising, in practice it turns out to be a small price to pay for a fantastic free service. I believe the self-quantification market will grow in very much the same way. After all, what better service can you provide than the gift of health?

I am convinced that in a decade or so we will see the refinement and clarification of our current medical knowledge as well as whole new discoveries and new avenues of research opened up by the power of ubiquitous tracking hardware and clever mathematics. Our job as developers and engineers will be to dig up the gold in the mountains of data.

The hardware is well on the way to becoming reality in our lives. From the Fit-Bit device to health-monitoring toilets (as we saw in a final-round proposal for Google’s 10 to 100 project). Now all we need is a comprehensive, well-integrated, robust, cloud-based and highly scalable software solution to take advantage of this opportunity.

That is where my interest lies, and I’m committed to collaborating with others who are heading in the same direction. I feel it has the potential to improve the health of millions, if not billions of people around the world.

By Bard Canning

I have been requested to make my personal system available online for others to experience and test out. I have made a demo with some sample data which can be viewed at
http://spreadsheets.google.com/ccc?key=0AoTcUIoZTAbZdHZEdWJOTTFNZ3VybVc1cGNkRllvSWc&hl=en

The form which feeds the data into this spreadsheet can be tested at
http://spreadsheets.google.com/viewform?formkey=dHZEdWJOTTFNZ3VybVc1cGNkRllvSWc6MA

It’s a simple Google docs spreadsheet linked to a live form. If you need help setting up your own version and interpreting results, feel free to contact me at bardcan@gmail.com

I apologize for the intense mathematical format of the spreadsheet, but I have not had time yet to develop a proper, simpler user-interface for it. Ultimately, I believe it will have a very slick, minimalist natural-language interface that will hide most of the complicated math.

The correlation table uses the basic correlative coefficient to calculate the strength of the relationship between two series of data. The relationship is either positive (the values rise together, eg: weight gain and chocolate consumed) or negative (the values head in opposite directions, eg: weight gained and minutes exercise).

I use text coloring rules based on the strength of the correlations to draw the user’s attention towards the most important relationships. For example, in my data I quickly found that there was a strong negative correlation between my nasal congestion and how I felt each day. This focused my efforts on reducing my severe allergies and to my surprise I found that when treated effectively, many of my other symptoms, such as asthma, reflux, insomnia and headaches also reduced a great deal. It is these kind of indirect discoveries that we can make using a correlative system like mine.

The fascinating relationship between the autonomic nervous system, allergies, mood and chronic fatigue is the topic of a book I am currently writing.

I should point out that I am not a statistician or trained data-miner, so the algorithms in my system are still rudimentary. I look forward to connecting with others in this growing self-quantification community so that I can further develop my system.

Wayne Cho: Depression/Anxiety Hero

Alexandra Carmichael — Wed, 17 Jun 2009 23:37:06 +0000

This is an amazing story. A man who suffered from anxiety for many years has run across the entire country of Canada.

His name is Wayne Cho.

His mission is to raise awareness for anxiety and depression, and eliminate the stigma around these illnesses.

His message is one of inspiration and hope.

Here’s what he wrote to his Facebook followers after the successful completion of his run last week:

Dear all,

I have completed the run across Canada to raise awareness of anxiety and depression on June 11, 2009 and I would like to thank you for your support.

Once we have taken the first step, the next step becomes easier.
Keep making small steps and we will reach the world!
I cannot change the world as I am just one man. But with you, we can!
Love led me to this journey. Love gave me strength. Love is you and me.
Love…

With all my heart,
Wayne

Thanks Wayne, for your courage, and for touching so many hearts along your journey.

The Personal Side of Tracking

Alexandra Carmichael — Sun, 22 Feb 2009 15:46:18 +0000

Here’s a quick slideshow I put together about what I learned over 5 months of tracking my health, from August 08 to January 09.

Quantified Self Jan 09 – The Personal Side Of Tracking

View more presentations from Alexandra Carmichael. (tags: quantifiedself curetogether)

I’ve tried so many things to ease the pain – A Migraine Story

Alexandra Carmichael — Sat, 22 Nov 2008 11:37:48 +0000

Migraine is the third most active condition at CureTogether, and affects over 29 million Americans, with women being 3 times more affected than men. One member shares her anonymous story here, and talks about everything she has tried on her search for relief.
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“I have migraines, and I have tried many things to ease the pain. While I had incidents of migraines as a child, they really started in earnest after my second child was born, over 25 years ago. I’ve listed what I’ve tried below, what worked and what didn’t, and I’d love to hear what worked for others!

* Fiorinal
The first drug I was given was Fiorinal. Not something I would recommend. It gave me a buzz and had a rebound effect so that the headaches came back stronger after 4 days.

* Allergies
I was tested for allergies to certain foods and other triggers for migraines and I try to avoid those now: beans, corn, mountain ash.

* Biofeedback
I then tried biofeedback which was at the time an experimental process. They monitored the body’s involuntary physical responses: such as breathing, pulse, heart rate, temperature, muscle tension and brain activity through an electrical device that was attached to my finger. The objective was to see if changing breathing patterns affected the incidence of migraines. It did not but it did reduce the severity at times.

* Demerol/Gravol
On occasions when I have been immobile from the headaches and vomiting, I have been given Demerol and Gravol injections. They put you to sleep and eliminate the symptoms.

* Botox
I have also tried Botox since studies show that it assists in migraines. It’s effective but expensive and who really knows what the long-term effects are.

* Meditation
Now I try to meditate as much as possible and at severe times, I take Gravol followed by Tylenol 3.

* Early detection
The trick is to catch the migraine at the beginning. If I can, sometimes just some Advil gel will work because it dissolves instantly. Once a migraine starts there is nothing to be done but endure it. This can sometime take up to 4 days and is both debilitating and unproductive.

* Acupuncture
It has provided some temporary relief. But be careful who you use. The first acupuncturist I tried was a local chiropractor who said he specialized in this practice. He placed the needles in the wrong places (directly to the head instead of the back of the neck) and immediately triggered a massive migraine. The second acupuncturist I tried was the head of a college for acupuncturist. His results were better.

* Herbs and vitamins
I have tried a variety of herbal remedies such as feverfew and vitamin compounds which included B vitamins which are labelled as helpful. Again not much relief.

* Heat
One of the things that really helps, if you catch the migraine early enough is applying a hot pad at the base of the neck for as long as you can stand it. It relaxes the neck and, when combined with a strong cup of coffee, seems to work. But the trick is to catch the migraine at its outset. Since I get most of my headaches overnight, it is not always easy to catch.

* Selective serotonin receptor agonists (triptans)
They work by reversing the dilation of blood vessels in the head, stopping pain signals from being sent to the brain, and reducing inflammation in the tissues and nerves surrounding the dilated blood vessels. They did relieve the headache almost immediately but had unfortunate side effects of dizziness, violent diarrhea and uncontrollable vomiting. Needless to say I only tried it once. However, there are now seven medications in this class (Imitrex, Maxalt, Zomig, Amerge, Relpax, Axert, and Frova), so trying more than one can be a good idea.

Just writing about migraines is almost bringing one on. Thanks for reading and I hope it helps.”
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Thank YOU for writing. If anyone would like to share their experience with migraine, please either leave a comment below, or see what others are saying on the CureTogether Migraine page. Wishing you a pain-free day.

My Tracks to a Cure – one patient’s story

Alexandra Carmichael — Mon, 03 Nov 2008 16:34:12 +0000

Another CureTogether member has courageously come forward to share her experience with the chronic pain condition vulvodynia. She published her story online at Empowher and has agreed to share it here as well.
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“The first day I had sex again I cried. But this time it wasn’t because I was in pain. The uncontrollable tears came from what felt like years of my life lost to vulvodynia and now finally having a chance at a pain-free life. I don’t know how I got through my trial with vulvodynia, there were times I really felt like letting go. It was the most horrible period of my life and now all I want to do is to help other women from ever going through the torture I went through to becoming cured.

It’s hard to say exactly when it all started, as my case of vulvodynia gradually reared its ugly head over time. I began seeing doctors for it probably about 4 years ago, and last year it became so debilitating I could barely get out of bed. My case actually started with what was diagnosed as vestibulitus (the typical q-tip test) with pain only on contact. Later it became full-blown vulvodynia: red, raw, inflamed vulvar pain all over with no cause in site.

I tried everything! I tried the typical and somewhat forced abstinence from any sex for a full year (while I had a boyfriend). Upon doctor’s recommendations I took treatments like Nyastatin, Clobetosol, Lidocaine, Vitamin E, tea tree oil, boric acid, Estrace creams, testosterone ointments, anti-yeast creams, Diflucanzole, SSRI’s, anti-histamines, and antibiotics. I visited other types of doctors, allergists, naturopaths, nurse practitioners, muscle-testers, acupuncturists, herbalists, and nutritionists. I tried natural approaches like fasting/detox with colonics, exercise, and dieting (non-oxalate, raw foods, and elimination diets) for months at a time, as well as regular yoga and meditation. I went to counseling and emotional therapies because some experts will say we’re holding negative emotions inside that exert as physical pain. Every day I meditated, used the power of positive thinking, and visualized my inflammation going away. I even envisioned having sex that felt good (which is really hard to do when you’re in that much pain). I minimized every last ounce of stress from my life. I fanned my “area” dry everyday. I stopped wearing underwear. I tried so hard people thought my problem might be from trying too hard. (But what else can you do when you’re in that much pain?) I was asked to embrace the pain and thank it for sharing, to let go, and everything would get better. Well, that didn’t work either.

Perhaps some of these things were working or could have worked, but the problem was deeper. My vulvodynia was so relentless it couldn’t be resolved until I addressed the real health issue. Through tracking my symptoms everyday and graphing them over time, I was able to identify an extreme hormonal imbalance. I had inadvertently gone into menopause at age 25. I desperately didn’t want to do hormone replacement therapy because I felt the birth control pill (artificial hormones) is what had gotten me into this mess in the first place. With enough time working at my hormones through natural approaches (especially high quality vitamins and herbs), I finally conquered the condition I thought was going to rule the rest of my life.

Since my cure all I’ve wanted to do is help other women avoid going through the painful trials and errors I did. I considered becoming a doctor to fill a dire niche and makeup for all the help I didn’t receive. Fortunately this all could be done on a grander scale. I came across a scientific team of like-minds who endured vulvodynia for more than 10 years and all the effects of such debilitating conditions. It was clear we could have suffered a lot less if we only knew what treatments were working for other people with our specific symptoms and what experiments had already failed. Their vision was to bring patients, doctors, and researchers together to share and learn from each other at a central hub called CureTogether. With research being chronically under-funded, we knew together we could help it go faster in the lab and outside the lab. In addition to treatment reviews, we specifically wanted to open up research to everyone. Symptoms could be tracked over time and evaluated in graphs to find unique problem areas. Patients could have the option to anonymously compare their results and graphs with others to learn even more. The possibilities for discovery were endless. Because of our personal experience with vulvodynia, it was one of the first conditions studied: http://www.curetogether.com/Vulvodynia/

For my entire emotional experience with Vulvodynia visit my blog “The Full Vulvodynia Story” here with EmpowHer. Leave me comments and questions, I’m all ears. You can also find detailed reviews of all the specific treatments from me and others (successes and failures) at CureTogether’s Vulvodynia-Treatment page. Please share your experience too. We’re all in this together, and we can all help each other.”
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Thank you so much for sharing your story!! As always, if you would like to share your story, please write to Alexandra. All stories will be posted anonymously.

An Endometriosis Perspective

Alexandra Carmichael — Sun, 26 Oct 2008 22:29:00 +0000

Behind every piece of health data is a person. And every person has a powerful story to tell. We recently invited CureTogether members to anonymously submit their stories, to share their experiences with their conditions. One member wrote in with her story:
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“I’m 39 years old and my endometriosis symptoms began at 13. I was finally diagnosed at 23. In addition to endometriosis, I have multiple other chronic illnesses. My doctors believe many of these conditions are related to my endometriosis. I have participated in endometriosis support groups for 16 years. I have had 6 laparoscopies. I have found alternative medicine very helpful (especially acupuncture)! I have heard many women’s stories: of not being believed by their medical professionals; women who have had their symptoms marginalized or dismissed; women who go from doctor to doctor searching for someone who will truly understand, take them seriously, and help them get relief/manage their symptoms. Many women are not even believed by their own families just how severe and debilitating their symptoms are. There are many wonderful health care professionals out there who treat endometriosis patients. Unfortunately, finding them can be challenging.”
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By sharing stories we realize we are not alone – there are others out there like us, and we can all join forces and help each other. If you would like to share your story, please write to Alexandra. All stories will be posted anonymously.

Alexandra’s Vulvodynia Story

Alexandra Carmichael — Fri, 26 Sep 2008 10:31:43 +0000

After receiving a request from the NVA, I decided to submit my personal experience with vulvodynia to EmpowHer.com. It does get into some detail, not for the faint of heart, so be warned!

I wanted to put it out there to let the 6-14 million women with vulvodynia know they’re not alone, and to give a bit of the story behind CureTogether. I have improved significantly since I wrote those words a few months ago, and am now enjoying a pain-free life. So there is hope for all of you living in pain!

You can read my story here, and I’d love to hear yours too.