I contacted Dr. Ritsuko Komaki at the MD Anderson Cancer Center in Houston. I spoke with her about the possibility of treating the metastatic kidney cancer in the nodes in my chest with proton beam therapy. This form of radiation has been used to treat a number of different cancers in the chest, as well as prostate cancer and certain malignancies in children. The treatment is often used because it causes less collateral damage to surrounding normal tissue. However this has not been done to treat metastatic kidney cancer. I had a consult with Dr. Komaki and she felt that this treatment could br very useful for me. I also had a consult with Dr. Eric Jonasch of the GU oncology department-as I call him “the local kidney cancer maven”. He felt that pretreatment with a course of Sutent would be helpful to (hopefully) shrink the size of the tumor areas (there are 3 in my chest). After consulting with Dr. Komaki, she agreed. She felt that this would make planning the fields for the proton beam therapy much easier.

So here I sit in Houston in a rented apartment on a medication I had originally planned to try to avoid (as an avid cyclist and skier I felt that the side effects of fatigue and hand-foot syndrome could lead to a severe degradation of the quality of my life). However I think that the plan as outlined by Dr. Jonasch is a good one. I will await the 2-3 weeks of medication and then pray that I can start the proton beam therapy, which, will take about 2 months.

Without my being a d-patient e-patient, none of this would have happened.

Hi, as I wrote in my italian blog, Salute 2.0 (health 2.0), four years ago, Paolo Barnard – a famous italian journalist – thought that the Medicine and Healthcare could be redesigned by d-patient, the doctors who’re passed to the “other side”, and now know perfectly both medical science and suffering, having lived in other words on their skin pain, loss, anguish and the brutality of serious illness and treatment more extreme, but knowing better than anyone else the medical machine”.

The idea, first become a successful television program, Medical Nemesis, (RAI Educational, June 2005), and then a book, ‘On the other side’ (BUR Rizzoli 2006), even more appreciated by the public with 9 reprints, whose juice is the Decalogue to a Health more human ..

Not only, but as suggested at the first point of the Decalogue, on 6 September 2007 the Minister of Health, Livia Turco, settled the “Council of sick doctors” “, “cinical, who lived the experience of illness severe or disabling, which will be entrusted with the drafting of a plan to reform the Italian view of health”. Unfortunatly the Government changed few months later and, by now, the fairy story ended.

Lyme – emerging disease or hidden epidemic?

All, I’d never heard of the new film Joel mentioned, Under Our Skin: There’s no medicine for people like you. Quite a slew of award seals on the film’s site. Joel, do you know when it may be in theaters?

Check out the film’s YouTube channel. The stories look VERY much like the one told by Keith Schorch (linked in a previous comment). And I’m a slug for not having noticed Elizabeth Cohen’s piece about the movie for her Empowered Patient series on CNN last July.

> saw my name on a panel

This is funny, because the term e-patient is not synonymous with me; I’m one specimen, not the whole species, by a long shot, but you’re not the first to think “e-patient = Dave.” The excellent overcrowded e-patient session at SXSW was led by our John Grohol, one of the e-Patient Scholars Working Group, gathered years ago by our founder Tom Ferguson.

It’s not all about me, but hey, whatever spreads the word is fine with me – make me a human billboard. A poster child, if you wish.

—- Hey John, you’re a star – this e-patient fellow was looking for a report on your session at SXSW! I have a suggestion for you. :–)

I found e-patients when you cross-posted on thehealthcareblog. Then, I think I saw your name on a panel at SXSW. We didn’t make it to your session. How was it? I came here expecting a blog report.

It is always hard to know where to start when talking about Lyme disease. It has become almost entirely a political construct.

The best way to figure out what is going is to invest the two hours to watch “Under Our Skin”. You will probably recognize a potent mix of e-patient issues in the film, also. We are getting a start on our website seranogroup.org, too.

There is no good test for borreliosis. That’s part of the politics.
Dr. Martz knew Dr. Bill Harvey who was written up in Osler’s Web and became expert in borreliosis, hence Dr. Martz suspected borreliosis. MD contacts made it easier for Dr.Martz to get access to drugs than a typical citizen.

Frankly, response to antibiotics, good or bad, would be the only way for a misdiagnosed ALS patient to know they had borreliosis.

Also, what led him to suspect that alternative?

We have a possibly similar story in our archives from last June, about Trusera.com founder Keith Schorch.

His story is told in the documentary film “Under Our Skin”. His journal report, Motor neuron disease recovery associated with IV ceftriaxone and anti-Babesia therapy, is found in Acta Neurol Scand. 2007 Feb;115(2):129-31.

ACOR had the luck of having one of the world most well-known researchers of a specific leukemia on a list for over 10 years. Patients greatly benefited from his presence.

- Dr. Steven Edelman of TCOYD / UCSD
- Dr. Irl Hirsch of Univ of Washington
- Theresa Garnero of UCSF

and so on. Thanks for the insightful post!

Re “rational” this would be a good time to synopsize your view of that subject. I remember a scholarly dissertation you posted a while back, about (I think) “rational ignorance”?