Archive for the ‘ePatients’ Category

To keep up-to-date on the subject in the medical field in which I have an interest, personal or professional, I subscribe to Medscape updates. I strongly encourage every ePatient or person that advocates for themselves or another should do the same, IMHO. It’s free and very worthwhile.

A shocking topic came through today and I HAVE to share it with everyone I possibly can.

Anyone that has been dismissed, treated in a less than human manner or completely ignored by a doctor they are looking to for help may second-guess their initial feeling: “Why does that doc hate me so much?”

You discuss it with your spouse, your friends, your fellow “zebras.”

Most tell you, no, doctors don’t hate their patients-s/he must have been having a bad day…or..YOU are reading too much into the interaction.

Read the Medscape article  HERE:

It is titled, “Medscape Business of Medicine Top Complaints Posted on Doc-Rating Websites,” by Shelly Reese.

Then, please read the response from a doctor to the article, a Dr. Barbara Lawrence, copied this directly from the plethora of comments, about 25% of them similar in tone (OMG – these are the people we are trusting with  our LIVES…) below:

“This reminds me of a large, complex doctor evaluation done by the Feds on Medicare patients. After evaluating multiple categories it turned out what seniors valued most highly in selecting a doctor/practice was the number of parking spaces and the waiting room appearance.

I don’t mind patients being sensitive to my bedside manner, my staff’s courtesy or follow-up phone calls. But really , I’m not in the business of customer service because I’m a medical professional. I can’t guarantee that patients will be seen on time due to the unpredictability of what comes through the door.

I could care less if the patient thinks they were correctly diagnosed or treated because we aren’t peers in internal medicine. Just because Readers Digest says being tired is a sign of lupus doesn’t mean you have it.

Patients may want to be co-partners in their care but they suffer from the extreme disadvantages of being poorly informed/misinformed, anxiety-driven, making judgments based on anecdotal information or TV ads, and no long term clinical practice experience.

That’s not to say their ideas have never been right. Sometimes they are spot on. But most often they come in with fixed foolish ideas planted by Connie Chung or, God help us, the internet.

Such “customer service” surveys should confine themselves to the patients’ area of expertise, and not the esoteric and complex art/science of medicine. experience.

That’s not to say their ideas have never been right. Sometimes they are spot on. But most often they come in with fixed foolish ideas planted by Connie Chung or, God help us, the internet.

Such “customer service” surveys should confine themselves to the patients’ area of expertise, and not the esoteric and complex art/science of medicine.”

(Emphasis added)

So, how dies THAT make you feel??

Vindicated – you are not crazy, overreacting, etc….?

Mad as hell?


Do you feel sad for her patients?

Do you wonder how many of them were misdiagnosed, ignored, or treated harshly by her in some way?

I REALLY would love to hear your reactions!

My opinion:

A doctor-patient relationship should be one of mutual respect. If a doctor wants the respect and admiration of patients, treat them likewise. And for all concerned, they should stay abreast of the latest medical advances and studies in their specialty.

I wrote a lengthy reply to her nastiness , but I won’t include it here unless my readers ask. (I did say this in support of all us zebras: “It will confirm what all of us hard-to-diagnose patients have experienced- that docs with hatred towards us DO exist.

How sad.”

(Gee, I wonder how Connie Chung feels about being called out in this? Yikes.)

Comes from THIS article....

Graphic comes from THIS article...what a coincidence!

I had my genome sequenced primarily for health reasons in late 2013.
Not only did I get some great information that confirmed what I already knew and informed me of my relative risks for other health conditions, based on my own genetic ancestry, I learned that I am 44% Ashkenazi, an important category of people who are prone to medical oddities and have been studied in-depth for this reason. (This proves that you can’t believe everything Mom tells you sometimes..I was supposedly Italian and Scottish/English. Whoops.)

I chose to have my testing done by 23andme, primarily because of their reputation, their ongoing independent research into many genetic issues, and the fact that they will continue to update your results for ten (10) years based upon any research. There were many choices available and many levels of cost. It is very disheartening to have had the FDA suspend the medical genetic testing portion of their operation for what I personally believe to be political and capitalistic – they are not getting any money from the testing, nor is any income being generated for the FDA’s strongest lobbying groups. But, I do not wish to discuss the politics of the FDA here. Unaligned DNA sequences

Using my genetic raw data, I used several online services to re-analyze the results I had received from 23andme. Many of these databases address or define particular issues that 23andme chooses not to tell their customers. Perhaps this is due to space limitations, or the mere fact they don’t want to overwhelm lay persons with information that may not make much sense to them. I found that Promethease was the most comprehensive analysis tool available. (If you choose NOT to download the analysis tool, the reports (yes plural) will cost you $5. I downloaded the program so I did not have to pay for my information).

If you are a regular reader of my blog, you know that I have a lot of uncommon conditions, and that I have been misdiagnosed and/or dismissed by MANy physicians over the past 30 years. I have had all sorts of strange and “rarely reported” side effects to many medications. Now, thanks to 23andme and Promethease, and my subsequent research (jump-started by the links in the Promethease report), I now know WHY.

So, WHY?

My results show a multitude of genetic mutations in one of the genes known as the “multi-drug resistance”  (MDR) genes –  ABCB1 (“a gene that is the member of the superfamily of ATP-binding cassette (ABC) transporters. ABC proteins transport various molecules across extra- and intra-cellular membranes. ABC genes are divided into seven distinct subfamilies (ABC1, MDR/TAP, MRP, ALD, OABP, GCN20, White). This protein is a member of the MDR/TAP subfamily. Members of the MDR/TAP subfamily are involved in multi-drug resistance. The protein encoded by this gene is an ATP-dependent drug efflux pump for xenobiotic compounds with broad substrate specificity. It is responsible for decreased drug accumulation in multidrug-resistant cells and often mediates the development of resistance to anticancer drugs. This protein also functions as a transporter in the blood-brain barrier.”

This information coincides with the strange side effects and non-response issues I have had for decades with certain drugs. It is welcome confirmation that something is DEFINITELY different about me…it is vindication….documentary evidence…and proof of my own hypothesis (bolstered by the occasional physician) that “something wasn’t right with me” since I was 12 yrs old.  Even better and more important – it is based on HARD science – using my own genome!!! Not just supposition based on some papers or articles I heard about on Dr. Oz or WebMD, or anecdotal ramblings I try to get my doctors to “hear.”

I recently had a serious adverse drug event that could have been prevented had I known about my ABCB1 mutations before I started the medication. When I informed my doctor, the response I received was a copy of a 3 yr old opinion paper written by a “for doctors-only” research service dismissing most genetic testing by commercial entities as inaccurate and unreliable – despite the fact that these companies use the EXACT SAME proprietary, science-industry-produced tools and assays as any hospital, medical lab or university researcher would use. The article referred to genetic testing initiated by patients as part of the “personalized medicine” fad and gave strong advice to their target audience NOT to rely on any of the results. (Unfortunately, I do not have access to the service that publishes the article, therefore I cannot give you a link to it. However, if you contact me, I can provide you with a PDF.)

While I agree that testing in the PAST was if-fy, based on which lab was utilized, I vehemently disagree with this article’s continued dissemination to physicians based simply on the harm that it could cause to patients.

MDR mutations have HUGE implications in drug metabolism. If drugs that do not cross tissue barriers due to the lack of proteins in a person’s body that are supposed to carry drugs across membranes which they need to cross to work, they can accumulate in organs and body tissues and cause problems. I’ve had that happen.

Since I received the 2011 article from my doctor putting-down of “personalized testing platforms” such as 23andme, I have done some research and found MANY online resources that re-analyze the results of the 23andme testing (or DNA raw data from anywhere) are now available on the internet. I imagine this was in response to the persistent questioning of results by healthcare professionals.

Also, it should be noted that as inferred in the anti- personalized medicine article, 23andme doesn’t use their own geneotyping materials, but in fact uses commercially available arrays – just like the “real doctors” use! They state this clearly in their response to the FDA’s accusations about a month ago. I count at no less, 25 commercially available microarray cards that are manufactured for the purpose of determine multi-drug resistance available (just an example from ONE company), then it must be a lot more standardized than the author of the article is aware.

So, why did I mention DOGS in the title of his post?

Check out the link from this pic!

Check out the link for this pic! You can’t escape the uses of DNA!!

Turns out that MDR testing for purebreds is a common thing, as is evidenced by the multitude of tests available  – this is one company offers MANY. Just Google “canine ABCB1 testing” for a plethora of research articles on canine testing, and companies that specialize in such testing. (Perhaps I should go see a vet….)

I now fear seeing any more specialists here in Boston, where microspecialites seem to be norm at these training hospitals. I fear seeing a “personalized medicine” hater, or someone who despises people like me – ePatients that have the knowledge and ability to research issues on our own, similar to a certain specialist I saw last year that was agitated that I had possession of my test reports and medical information. Gee, if he know I had my genome sequenced and had all this information about my DNA – he would blow a gasket!!

So, why don’t I see a geneticist, you may be wondering…My insurance company will not pay for me to see a general geneticist – a cancer geneticist – yes – in fact, “strongly recommended” for people with my breast cancer family history; or, a cardiac geneticist – sure, no problem! The insurance company’s policy conveys that it doesn’t think that any other genetic abnormalities are important enough to explore to improve or save their patients’ lives, or even save them money in finding a treatment for their disorders.

A multitude of papers address this topic (not “personalized medicine” – but ABCB1 and other P-gp mutations) – in detail – be it for cancer drugs or antidepressants. Most often, it is applied in cancer cases, as certain cancers show affinity/resistance for one drug or another, based on P-gp status.

The man who wrote the most cited paper regarding the specific SNPs responsible for genetic-based responsiveness to several different antidepressants is Manfred Ur, MD at the Max Planck Institute of Psychiatry. He has been researching and documenting these polymorphisms in well-respected peer-reviewed journals since 2000. His webpage is a great place to start your research.

Here are a few of the most informative research papers I have found on the topic of ABCB1 mutations. Don’t forget to check out the references at the end of the article – they are a treasure-trove of additional information, and may lead you to exactly what you are looking for, if the referencing paper didn’t hit home for you.

ABCB1 – Genetics Home Reference

Great Tutorials about Pharamcogenomics

Polymorphisms in the Drug Transporter Gene Predicts Antidepressant Response

The ABCB1 Gene and Antidepressant Response

Ethnicity-related Polymorphisms and the ABCB1 Gene

Pharmacogenetics of Antidepressant Response – An Update

As my readers know, I am quite angry with what the health care system has handed me of late.

I won’t even go into the ludicrous bureaucracy that my health insurance company (local to MA…named after a large university here in Boston and the folks that sailed over here on the Mayflower…) has added to the mix.

Nor will I travel down the path of how insanely horrendous the service is at the mail-order pharmacy is (“at the corner of happy and healthy” – HA!) I am forced to use by said insurance company – so bad that I have to go through the main office of the company in Florida from now on to get service due to the numerous screw-up they have made…and how miserable they have made the lives of the wonderful staff at my PCP‘s office.

But, a ray of sunshine appeared in my inbox today – this posting from a great doctor-centric blog called Mind The Gap

The topic of this particular blog is about how doctors lose opportunities to connect with their patients – or, how doctor-patient communication fails. This blog doesn’t mince words – it calls things as they are – point out the flaws in the system – and doesn’t blame patients with their lists of questions as so many other physician-oriented blogs are apt to do.

It also reminded me of the other great posts that Mid the Gap also posts regularly. Any ePatient, advocate or activist might want to consider following this blog. The authors are well-credentialed, and echo sentiments I often express.

[Since I don’t have those two elusive initials after my name, most seem to turn a deaf ear to the 16 years of my knowledge and experience I have been blogging about for years – and about how I have been somewhat successful in getting appropriate treatment for some not-so-common-illnesses, and perhaps most important, feel believed (I am a female, after all).]

My response to the Mid the Gap posting today:

“Doctors are “missing the boat” b/c they don’t communicate with each other about their patients that they refer to each other. They refuse to share reports. The patients are left in limbo – with no info, and no way to get the info without PAYING for the report. Why can’t docs communicate about their common patients? Perhaps then they could actually help SOLVE their patients’ issues instead of keeping their patients sick, depressed and on disability. I am a “victim” of the micro-specialty craze sweeping the medical fields. I have seen more specialists in one year than I hae seen in the prior 50 yrs of my life. And have any of them communicated with each other to say, see if ANY of my symptoms are linked or related (hmmm, based on what I know as a former biotech/science person myself, I would say that autoimmune and autonomic problems are likely linked…as could be the pituitary tumor and sudden painful breast growth and horrid depression…and my Raynaud’s…and my migraines…) But none of these micro-specialists will talk to each other. Most of them refuse to send reports to my PCP – and she is the one that REFERRED ME TO THEM!!!
Talk about missed opportunities – there ya go – that is where the missed opportunites to help patients are originating. How does that oath start again…, oh yeah, “First, do no harm…”


I wish I had the time and space to tell you how much harm these specialists have caused for me, my family and my quality of life because of their arrogance.

Thank you for pointing out that the problems with healthcare today are starting with the doctors attitudes and not with the patients – as many doctor-centric blogs do. Keep up the great work!!!!”

This will be a short blog entry.


I just discovered two MAJOR hospitals – one of which I’m having an operation at in less than a month, has incredibly incorrect medical information about me in their computer system. How did I learn this? Open Notes. Now you know which major hospital i’m referring to. Incorrect history, medications listed I’ve never taken, incomplete medication allergy lists…
I m scared.
It’s not for lack of trying.
Everyone knows about my multi-page info printouts that contain all this info that I bring to visits. The same ones numerous docs have told me they think are “great” tell me I’m a “god patient” and “wish more patients would take such an active role in knowing their health history, medications and diagnoses.”
But what good does it do if this info never makes it into the EMRs?

The second hospital is in Worcester. A major teaching hospital – I gave my printout to the person takes with entering this info (according to the doctor) and not only couldn’t she read Englush, she dint know what”PRN” meant, nor what basic medications were. In the nail today, I received a summary if the “medical record” this huge and well-regarded center has on file about me.
I was sickened and infuriated. How many times do these people have to be handed computer-printed, legible information – and how difficult is it to scan/transfer this info into their systems? My PCPs network seems to have this down to a science (, for those interested in a competent organization).

This so-called “Personal Medical Record” listed meds I’ve never taken, incorrectly spelled meds, meds that were the incorrect formulation or the wrong dosages…and, my medication allergies: INCOMPLETE – with the most important ones I list first on my printout – the ones that cause anaphylaxis – not even on the sheet. I guess they don’t care if I suddenly die from anaphylaxis on their watch.

I promptly wrote letters to the Patient Affairs offices of both hospitals. I enclosed the poor excuse for a “record” that the Worcester Hospital sent me, highlighted, noting all the errors and omissions.
I also quoted statistics from the IOM: 70% if medical errors are cased by improper treatment. 90% of those are preventable (a 2008 statistic). Also, medical errors are the 7th leading cause of death in the U.S. (Another IOM statistic from 2013. (The Worcester hospital refuses to accept email – ill dry to flag down a carrier pigeon tomorrow….come on, get with the 21st century like the rest of the medical community!!)

What a warm and comforting feeling that gives me when I have surgery planned at one if these hospitals in a less month. Perhaps, If I had a death wish, it would.

This oddly follows in sync with an article published by Medscape recently (Oct 24, 2013) that asked doctors what they thought the top ten barriers were to the practice of medicine today. Guess what several referenced – technology. One doctor ( Henry R. Black, MD of NYU Langone) specifically mentioned the incongruence of EMRs – systems that were supposed to simplify and streamline patient care, allowing all doctors access to a patients test results and specialists’ reports. The problem? No practice or hospital uses the same EMRS, or EMRs that can interface!! What are we paying for?

This has become the number one problem in healthcare, hands down.
How can you even worry about doctor-patient communication when the doctor isn’t even looking at The correct information.

Discuss this with your doctors and quietly freak out…and PLEASE check your EMRs for accuracy! If mine are incorrect in 2 of the 5 major healthcare systems I deal with – I fear what may or may not exist in the other three.

Here’s some info- albeit not empirical – a good posting that describes a DYSAUTONOMIC’s experience (not just POTs patients). This was posted on another bloggers blog and I’m re-posting here. ..and, oddly, contains passages that I, ( had written in response to a posting on someone else’s blog months ago.
So I learned a lesson…always make sure you post your musings on your own blog to preserve ownership.
Regarding this “article” – It describes FAR more than POTS-which, is but a small percentage of those that have the symptoms described in this re-posting and apply to most folks with dysautonomia. (Disagree? I’ll let my dysautonomic specialists know.)
I often ponder why it is that most POTS folks seem to claim ownership of the dysautonomia diagnosis ….it’s as if the rest of us that have another, and often untreatable, form of the disorder just don’t matter at all….
A note to those that fit into this category (the non-POTS group) – you are not fighting this invisible illness alone. Medscape has a fantastic educational page on Autonomic Disorders in their education/diagnostic section. We do exist.


I was blessed to have been asked to review this book, Chronic Resilience, by Danea Horn (Conari Press, 2013) for the Journal of Participatory Medicine. I usually avoid books that are classified in the “self-help” category – those of your that have read my blog postings know how I feel: that there is no room for unicorns in the management of medical issues ..nor bunnies, rainbows or platitudes and false hope (which to me  =  denial).

Well, I so happy to say that Danea Horn’s book was an amazing, pleasant surprise, and one that I would highly recommend to anyone that has a chronic illness. The book is marketed towards women, but I do not see why men could not benefit from the content as well.

I suffer from three different, unrelated chronic illnesses, so this book was especially relevant to me. I have read many books, articles, research papers and blogs tailored to the individual with chronic and unique medical conditions. “Chronic Resilience” is the first book I’ve read that highlights and teaches the reader to embrace the strength gained when going through a traumatic event, and continue to apply it to living with a chronic illness. (Uniquely, this coincides with a trend in the psychosocial community to look at PTSD not as a “disorder,” but as the gaining of “post-traumatic resilience” – strength achieved through surviving trauma and adversity successfully, and learning new skills throughout that experience. Danea educates the reader about this special resilience via “journal prompts” – suggestions for self-exploration – along with the stories of others with chronic illnesses and the unique skills they found that they possessed during the course of their illnesses. It is important to note that the way in which she presents the journal exercises doesn’t feel like at all homework, or a like a typical journaling assignment from a therapist. All of her journaling exercises are in context with the subject matter, and bring to light the resilience that we as humans develop when faced with adversity, but often forget about when the long and complicated names of diagnoses, test results, and the fears of what the future may bring are piled upon us.

The “Chronic Resilience” unique journaling exercises help to make YOU the focus of the book. I found the most important activities to be in the first few chapters, as these helped me to become not just the reader of the book, but an actual, active participant in the book. I wasn’t just learning about others’ experiences of their inner resilience despite having chronic illnesses – it honestly felt as if my saga was woven into the stories presented. I had expected a chapter about each woman that had graciously volunteered their story for inclusion in this book, – but was ecstatic to find that Danea had seamlessly integrated the challenges faced by these women within each chapters. She uses a different woman’s experience with which to illustrate a different aspect or lesson of human resilience. By combining these narratives with the emphasis on a specific aspect of resilience, along with the journaling prompts, Danea helps the reader to identify her own strengths and beneficial place in her own life.

Danea speaks specifically about taking “ownership” of your health. She emphasizes the necessity of caring for your body, listening to it’s cues, knowing when to slow down, and learning your new limits. Most importantly, she emphasizes that “ownership” is not “becoming” your illness – being “a cancer patient” or a person that “suffers from fibromyalgia.” Some of the things “ownership” is: learning what IS in your control in your life, becoming educated about your condition (from valid sources), assembling (as Danea calls it) a “kick-butt medical team,” and seeing a counselor when you feel overwhelmed with your diagnosis or its limitations.

Overall, Danea’s book is a refreshing breeze in the mire of self-help books about dealing with chronic illnesses (those typically heavy with platitudes,”positive affirmations,” lists of impossible rules to follow, and the “chin-up buttercup” rainbow and unicorn imagery.) She provides lists of helpful resources throughout, and lists many interesting and relevant references. Although this book wasn’t written specifically from the “e-patient” perspective, it does directly address how to become a participant in your health care – and how to successfully communicate your needs, fears, concerns and questions to doctors, family and friends. Danea has done a truly unique and beautiful job of teaching us how to be human, in spite of what obstacles we have in our lives.

I do hope that is you have a chronic health challenge, or know someone that does, that you pick up a copy of this book.

I recently found what I thought was an excellent definition of a e-patient:  “A patient who is empowered by the internet and digital technology to find education, support and treatment. Technology is enabling ePatients to take an active role in their own healthcare like never before. Digital is also allowing ePatients to communicate with providers, caregivers and other stakeholders in a powerful way that brings about “participatory medicine”-where the patient is actively leading their own recovery and care.”

Great stuff – huh?

Problem – it is from a corporation that sponsors a yearly conference: ExLPharmaConnections. Their website states that “the goal of e-Patient Connections 2013 is to bring together health communicators from different industries to compare and contrast the best ways to connect with empowered, digital patients.” By different industries, they mean large health insurance companies, pharmaceutical companies and a representative from hospital or two…but from the list of participants – mostly insurance companies and drug companies….aalthough they did mention one “ePatient”.

I have tried, and tried and tried and tried to get in contact with someone from this convention/organization – but I have yet to receive a response. Note on their contact form that “company” and “title” are mandatory fields. In spite of the warm and inviting intro on their splash page, it is obvious that they are not targeting the actual ePatient for this conference – not even an educated ePatient like myself. They seem to be targeting people who want to get together to talk ABOUT ePatients, not WITH them.

Scott Mace recently wrote a most excellent article explaining the role of an ePatient here on He eloquently quotes ePatient Dave’s most recent book, Let Patients Help, and give the reader a few real-world scenarios of what it means to be an ePatient and how it can help you or a loved one receive better health care. That’s awesome. Please click over and give it a read.

When I heard ePatient Dave’s Ted Talk, I was so inspired. It was as if this was the one this I had  been waiting to hear my entire life. All of the horrible medical stuff I had muddled through now had a purpose. So my tem little fingers got busy on the interwebs contacting everyone I could find  – I wanted to be involved! I did hear back from a couple of the organizations I contacted, but with a LOT less enthusiasm than I had expected. Here I am – offering them my skills, experience and time for FREE… and….well… All I keep reading on ALL the sites are how they want “people to get involved.” Well, here I am y’all!! I’m a people! I want to be involved!

But, wait.

There seems to be a very distinct disconnect (for lack of a better word at the moment) between the different groups and agencies and companies that are talking up the popularity of the ePatient and how important this ePatient is to the future of medicine. Some publish downright negative articles about ePatients (a popular political gossipy website – you can Google this site – this one doesn’t even deserve a quote!). And then, there are several doctor-only blogs that refer to ePatients in very negative ways, such as having “Cybercohondria.” There is even a Wikipedia entry for it – and actual university studies have been done on the “disorder.”)

Maybe this is why I received the tepid response to my inquiries…i’m not the “right type” of ePatient. I wish I know how to become the “right type.” What do I have to do?  What malady to I have to be afflicted with? Who do I have to connect with?

I want to be involved in getting the message out – such as educating physicians about ePatients (I used to teach physicians ACLS – Advanced Cardiac Life Support – when I was an EMT back in the 1990’s, why couldn’t I teach them about this?)

I have a glimmer of hope in the Society for Participatory Medicine. I desperately want to join, but alas, my numerous medical conditions that have kept me from working since 2009 so I can’t justify the fee to join as all my funds go to co-pays (I am referring to my medical weirdness which have had me advocating for proper medical care since I was 12 – and sneaking into medical libraries for info on my dubious diagnoses since I was 16 – wayyyy back in 1979 – hmmm, does that make me  the original ePatient???). I am trying to volunteer in any way I can to help out to obtain membership and I hope that works out soon.  The Society also publishes a Journal and I look forward to possibly being able to contribute in the future, given my decades-long history of advocacy, research, collaboration with my doctors. It is a seemingly never-ending process as I get diagnosed with something new that baffles each new doctor I see on a monthly basis these past several months. I’d certainly would like to use all  of the experience I gained researching and writing all those term papers for college degrees for something worthwhile.