Under Our Skin: Chronic Lyme Disease

Last week I saw a screening of Under Our Skin a documentary about chronic Lyme Disease. It interweaves two stories. One is the personal journeys of a few individuals—the course of their illness and their struggles to cope. The other is that of the battle between a healthcare establishment that denies the existence of this disease and a few brave (or quack, depending on your perspective) doctors helping those individuals.

The pain, the suffering of those afflicted is undeniable. Their courage, in following the regimens of those pioneering doctors, is also undeniable. Both the practical difficulties and the side-effects are daunting. But, the results are spectacular. After years of destroyed lives, people are able to live fairly normal lives.

And yet, the dilemma facing the medical establishment is also made clear. The sufferers have a wide variety of symptoms—in the movie, several minutes go by as people rattle off their symptoms—and these seem to vary day-by-day, week-by-week, person-by-person. In addition, those pioneering doctors use an enormous cornucopia of medicines and other forms of treatment. Medicine is by nature and practice a reductive science. Something this amorphous simply cannot be accepted. Until “chronic Lyme Disease” can be identified much more crisply, it cannot be classified as a disease, and there can be no established treatment guidelines.

The film did not give me confidence that two sides could easily be reconciled. Perhaps the medical industry will give in to the forceful and emotional demands of sufferers to officially accept this disease and its treatments as legitimate. More likely, as shown in the film, the medical establishment will succeed in shutting down what they perceive to be quack-doctoring.

It is clear that both Lyme Disease sufferers and the medical establishment would benefit tremendously from Zume Life.

Individuals, and their families, would have far more success adhering to their complex regimens and keeping track of their myriad symptoms, with Zuri’s reminder and recording functions. They and their doctors would see more clearly and more quickly what works and what doesn’t, and change treatment appropriately.

The rich data captured by the Zume Life system would also permit medical scientists to better understand the situation. Sophisticated data analysis techniques could be applied, resulting in conclusions acceptable to the medical community. Perhaps everyone will be able to see “chronic Lyme Disease” as clearly as its proponents do today. Or perhaps we will find that there are in fact several distinct conditions, each having its own unique signature of symptoms and appropriate treatment.

The Challenges of Surviving an Organ Transplant

Recently I met a woman whose husband had had a liver transplant. We were both on a flight and our trip-length discussion started off as casual conversation of “what do you do?” Her eyes lit up as I described Zume Life, and our focus on helping people take better care of themselves, of making it easier for people to manage their own health. What I described was not theoretical to her; it was her day-to-day reality.

Over 25,000 people receive organ transplants in the US every year (data). Their lives up to the moment of their transplant have naturally been very difficult. But, what comes next can be overwhelming for the patient’s family caregivers—a long, arduous, demanding, and tricky process of bringing the patient to a healthy state.

She showed me a folder, that she always has with her, which held reams of blank and filled-out worksheets of her husband’s daily health activities. Each day, spread throughout the day, she had to remember and record 30-40 specific health activities: 5 different biometrics, 17 different medications (Rx, OTC and supplements), and notes on food, symptoms, moods, activities and other notable events. Many of the medications had complex requirements (e.g. dosage dependent on a biometric measurement, “no food 1 hour before or 2 hours after”, different schedules for different days, etc.). In addition, the regimen changed constantly based on her husband’s changing health situation and the doctors’ interpretation of these changes. Being able to adhere strictly to this complex regimen and keeping very good notes is critical to her husband’s successful recovery.

As his health is so poor, due to both the underlying problems and the effects of this bombardment of powerful medications, the burden of adherence really falls upon her, and other such family caregivers. My fellow traveller explained that she was able to manage—hard work but doable—given her professional experience managing the details of large, complex projects. But, for many others in her organ transplant support group, this situation was overwhelming. They just couldn’t cope, they just couldn’t manage. They needed help, and she felt that Zume Life’s system was absolutely essential.

Through this conversation I also came to appreciate why the post-transplant situation is so demanding. Having never really thought about it, I assumed that once you replace a bad organ with a good one you’re on your way to recovery. It’s not so simple. The body is a complex organism, with lots of different working parts. If one component is working poorly, everything else is affected; the body has come to achieve an equilibrium where it continues to function in some manner despite the poorly performing organ. After that organ is replaced, all the other body parts are still working as they were before, creating havoc, and a big portion of post-operation activity is keeping the body from spiraling out-of-control.

Hundreds of thousands of dollars spent on the operation ... and then we leave families to create their own spreadsheets! Clearly we need to do better.

The Importance of Self-Care

Addressing the challenge of self-care is the most important health issue of the 21st century.

Over the past century there has been a tremendous advance in overall health due to advances in health-care technologies: in medical science, in the education and practices of healthcare professionals, and in efforts devoted to public health. These advances have led to a huge improvement in the overall health of society, enabling people to live much longer and to avoid and survive diseases and accidents that would have been deadly in the past. Because of these reductions in the impact of catastrophic events beyond our control, health is now much more a function of people's own daily, ongoing decisions and activities. People's state of health is much more dependent on their ability to take care of themselves and the actions that they take in their daily lives. Yet, people are struggling in their efforts, as is clear from prevalence and continued rapid growth of chronic illnesses.

"Healthcare" is really "sick care". The healthcare industry, the medical profession, are there to fix you up, as best as they can, when your health gets really bad. But, they can do little for your day-to-day health, as doctors and nurses simply cannot be by your side all the time. Healthcare is not scalable to continuing care. The paradigm of healthcare is simply inappropriate to addressing the current situation where chronic illness is the major health issue.

For the next great improvement in health, what is needed is a tremendous advance in self-care capabilities.

I'm trying to do something about this through my efforts in leading Zume Life. Zume Life's vision is to empower and motivate individuals to become fully and effectively engaged in managing their own health. It is our experience that most people are genuinely interested in being in the best possible health and that a supportive, positive and motivating environment combined with convenient and effective tools can significantly improve self-care efforts. Additionally, we believe that healthcare professionals can more effectively assist them if they have a better picture of their patients’ day-to-day health and if their patients have the tools to better implement and adhere to the prescribed regimen.