Tuesday, February 15, 2011

Getting the right medical help

As I’ve documented, finding myself in a position in which I could not effectively determine or contribute to the determination of the healthcare I was to receive proved disastrous. But even after I had recovered some of that ability, I found there to be severe obstacles.


One obstacle involves the resistance of medical personnel to my input about my healthcare. While shared responsibility for the determination of healthcare received is gaining advocates (see, for example, "Patient 2.0 Empowerment," a pdf), medical personnel I’ve encountered haven’t exactly been open to input. As the authors of "Reframing Health to Embrace Design of Our Own Well-being" write:

“The way we usually think about health today is bound up in the language of our healthcare system. We call individuals ‘patients.’ We call physicians healthcare ‘professionals’ (HCPs). Professionals ‘care for’ patients – by observing symptoms, diagnosing diseases, and proposing therapies. Their proposals are not just suggestions; they are prescriptions or literally ‘physician orders.” Patients who don’t take their medicine are not ‘in compliance.’


In the relationship between HCPs and patients, HCPs dominate. HCPs do whatever is necessary, with patients playing a relatively passive role. In some ways, the system reduces patients to the status of children – simply receiving treatment.”

Indeed, my experience has been that the doctors consider themselves to be the experts, and any input I provide is largely ignored, even when the doctors’ assertions are clearly wrong and perhaps particularly when I reveal that my input is based on research I had done on the internet. What a shame that medical professionals are so closed to well-researched input and to learning from patients, and are unaware of the high quality medical literature that is now available online.


Another obstacle involves the need to get a referral to a specialist from a general practitioner. If the general practitioner isn’t convinced of the need, there is nothing that can be done. Going directly to specialists is, sadly, not permitted in our healthcare system.


Perhaps the biggest obstacle involves U.S. physician ignorance about parasitic infection. As stated in “The Overlooked Relationship between Infectious Diseases and Mental Symptoms”:

“Conventional medical practice in the United States largely ignores the possibility of parasitic disease. There are several reasons for this:

  • When a disease is never diagnosed it is easy to assume that it does not exist. Parasites are often overlooked in the U.S.
  • There is a shortage of technicians who are skilled in identifying parasitic organisms.
  • Spending one’s day studying microscopic sample of stool specimens probably does not attract many laboratory personnel.
  • There is a common misconception that parasitic problems are primarily found in tropical countries and are rare in countries like the U.S.A.”

Yet, I’ve held out hope that I could find a competent, practicing parasitologist and/or either a neurologist or radiologist with real parasite infection expertise in the San Francisco Bay Area. As part of my search, I contacted the author -- a retired doctor -- of the above article. Unfortunately, this was his response:

“Unfortunately there are very few parasite experts in the USA. The thinking is there are no parasitic problems in the USA as it is not a tropical nation.”

Since “very few” is greater than none, I pushed him for at least one name. His response:

“I do not know who is honest and can be trusted in the field of parasitology and who is not reputable. This information is not easy to come by.”

Sigh…


My struggle to find a good expert of this nature in the U.S. is not unique. An example of the struggles of others appears in a father’s attempt to find a parasitologist for his daughter in 2005 that is partly captured in Google Answers (see “Need names of top specialists in country in human parasite infections”).


A couple of especially kind readers of this blog have done some research for me and have pointed me to some people in the U.S. who are likely to know of such specialists. Thus far, I’ve gotten no responses to my subsequent queries. However, I do know of a parasitologist in the Bay Area who treated a friend of mine – also living in the Bay Area -- whose brain surgery to remove a tumor resulted in the discovery of a pork tapeworm cyst instead. Unfortunately, my friend tells me he was unimpressed with this doctor (I hope to find out why soon). So, should YOU have any pointers that might help me in my quest, please contact me via email or a response via comment to this blog posting. My thanks in advance for your help.


Of course, even finding such a specialist does me no good without the referral of a general practitioner (see second obstacle described above). And then there are the fees. However, …


A doctor I’ve been seeing who provides free services via Healthy San Francisco, San Francisco’s mostly free medical plan, has thrown test after test at my ailments, all revealing nothing but more problems. None of the tests have had anything to do with parasite infection, about which he admits to knowing nothing. So, might he refer me to a parasitologist or even to a more general “infectious disease specialist”? Well, he can’t, because there is no such specialist in the San Francisco General hospital system associated with Healthy San Francisco, and any referral outside of this system would need to be approved by the Board, which he claims will deny any such request.


Sigh… There must be a better way.

3 comments:

  1. Richard, it's Gene Moy here -- I see this article here: http://www.sciencedaily.com/releases/2010/04/100414092525.htm and there is a reference to an article on neurocysticerosis, written by a Dr. Adolfo Ramirez Zamora, a neurologist who's now at Albany, NY, and there is a Dr Jaime Belmares here at Loyola med school in Chicago.

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  2. Richard, one of my best friends is a parasitologist in New York at the NY Blood Bank. Sara gives conferences for the World Health Organization for meetings of the world's parasite experts, but her projects are mostly in Africa. She does come to San Francisco sometimes to work with colleagues here. I can get you some names, but understand that generally parasitologists are not doctors. They are PhDs and researchers. I do know that UCSF has a big Infectious Diseases department because I went to them after I spent 5 days in the Hospital for Tropical Diseases in London in 1994 after returning from a trip to East Africa. I will contact my friend and see what she can do for you to put you in touch with the right person.

    Sandy Handsher handsher@yahoo.com

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  3. I find myself in very much the same situation as yourself. I really thank you for your blog writing about this and for your research.
    I have read about a parasitologist named Darvin Scott Smith in the Bay Area. He is a Kaiser physician so you must already belong to Kaiser and also belong to the same area of Kaiser that he practices. I don't live in N.California or else I would love to have seen him.
    I thank you for your blog and research very much. In my own battle with this plague of tropics I lost very much. Finally now I am starting to be believed by some because an eye doctor said my eyes were too damaged to see inside of them to check my retinas from keratitis, deep keratitis.
    I became very disoriented with this year (as it has been on year for me that I became very sick). I became disoriented with my sense of myself because there was so much outright hatred and cynicism towards me because I believed it was parasites making me sick.
    Thank you again,
    Christine

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