Archive for the ‘Evidence-based treatment’ Category

Interesting story.
I had a test a few days ago at a large, well-known Boston hospital.
The tech (well, this person was a bit MORE than a tech) related a story to me that made me cringe…and emphasized the need for more docs to a) realize that patients aren’t that stupid, b) that they are not making use of the any resources available to them on any e-device they may have access to to help their patients, and c) arrogance is running amok in Boston physicians, to the detriment of their patients.
The anecdote:
the person ( the “tech”), a well-trained and informed individual, was having symptoms consistent with a serious condition – Lyme disease. Since this tech is an employee at this world-famous so-called “cutting edge hospital,” the tech was able to see not just one, but THREE specialists in Lyme disease. Each one said that, no, this person did NOT have the disease b/c the famous “bullseye” pattern associated with the bite if the carrier tick of the parasite that causes Lyme wasn’t present. (I think by mow every person that has seen the TV show “House” knows the bullseye is not mandatory for a diagnosis of Lyme.) The tech was told that it couldn’t possibly be Lyme – that it must be something else. In other words, stop being a zebra, you are just a horse, you donkey.
It took a visit to doctor #4 (the doc that discovered Lyme!) for this tech to be diagnosed with Lyme.
Four doctors at one of the alleged “best hospitals in the world” to pay attention to this person. WOW.
Because of this person’s job, this person was able to obtain antibiotics to treat the condition in time, even before doc #4 finally diagnosed the condition, thus preventing the Lyme from becoming a chronic problem.
Four doctors.
Cab you say waste of money?
What if this person was NOT in the medical field and didn’t have the smarts to doña bit of proper Internet research?
What if this person just thought all docs were always right and listened to doc #1 and didn’t purse additional opinions, only to develop complications from Lyme?
What if this person tacitly permitted themselves to be treated like a horse, instead of following the hunch that they may in fact be a zebra?

How many people is this happening to every day, all over the country?

It takes literal MILLISECODS for PubMed or MedScape symptom searches (or countless other doctoresque e-diagnostic assistance programs) to be returned on an e-device. So “doctors just don’t have the time to research each patients’ symptoms ” is not a good enough excuse.

Are you a zebra being corralled with the horses? Are you being treated like an ass?

Speak up.

Don’t become an endangered species.

20130524-035450.jpg (pix by CapturedbyLori2012)

Probably 98% of the people that read my blog would consider themselves epatients…so I just had to reblog this – the comments in response to this article are worth the read – especially since some of the comments come from real live doctors!!
http://healthworkscollective.com/katie-stensberg/28336/more-5050-chance-emergence-e-patient#comment-3756
Thanks to Katie Stensberg for initiating this discourse on Healthworks Collective.

Here is MY response to the article AND the other responders. I’m interested to hear from others about this issue – until we significantly resolve this negative ePatient attitude that doctors have, we – patients – will continue to be at the mercy of the 12 minute doctor visit, the snapping off of all conversation by yhe dictors after 18 seconds of attempted patient input (sorry, I don’t have the reference handy for that statistic). We will continue to be “the hypochondriac in Room 4” or the “migraine in Curtain 2.” Our zebra-hoof eats will continue to go ignored, and we will be misdiagnosed, mistreated and dismissed by the paternalistic structure that somehow STILL exists here in the most developed country in the work in the 21st century.

My response to the article/comments:

“Yes. But. Most (not all, but MOST) docs loathe their patients trotting in with WebMd articles and printouts from various fora under their arms. I know this first hand. From dealing with MANY doctors. I’m no dummy, either. I have a medical and legal background. I’ve been researching health issues since I was 16, and had to sneak into the medical library at my local hospital – for it was “doctors only.”

I am blessed (yea-right) with several weird, bizarre, rare hard-to-diagnose conditions. Not my fault, folks. I didn’t choose my DNA.

But for my perseverance, I would not have the care I have now – and I STILL need more.

However, it is the sprouting up of these unprofessional, care communities where lay people dole out remedies as if it was the 18th century. (Really – telling people that certain NPs are “dangerous, when in fact they are actually quite normotensive – telling people to take drugs that are clearly contraindicated for their conditions – they would know that if they were using Scholar or PubMed…but they aren’t!!!! These people are harming themselves and others!!! (And ruing the reputations of skilled advocates and researchers such as myself!)

Its no wonder doctors have given e-patients the derrigatory label of “cyberchondriacs.” Look it up! It has its own Wiki entry!!

The ONLY WAY to get ePatients to be RESPECTED is to get these people searching on the proper sites…using peer-reviewed journals…medical texts, etc. and stop using anecdotal blather from Facebook and other “support sites.”

i recently wrote a “how to” blog post about the basics if successful researching for advocacy – I wish I could reblog it all over the web !!! I would put it on billboards if I could! Things WILL not change for patients untiil they start to bring docs cogent, respected research and evidence about their conditions that they cannot refute!!!

If you’d like my blog info, I’m more than happy to share! ”

Lori
EPatient 2013

I’m laying here, unable to sleep as usual, thinking about how hard it had been for me to find doctors that want to be diagnosticians – doctors that want to try and help me figure out what is wrong with me – doctors that want to think outside the box (not horses, or even zebras…I’m talking EMUS!) – doctors that think that I have some worthwhile life left to live at 49.

Yes, I have a great PCP. But I’m new to her, and in the past 6 weeks we have had some very lengthy email exchanges. She doesn’t quite “know me” yet – I get the feeling that she’s still trying to navigate my moods (which range from Pessimistic – wallowing in the Pit of Despair, to Frantic – being consumed by the Pit of Despair, to Optimistically Pessimistic – I am very familiar with the shit in my Pit, and i DOUBT that the Thing outside of my Pit has any worth.)

My husband thinks I will scare my sweet PCP away, Evil Thing that I have become…thanks to my untreated ANS dis-whatever!

“We” cannot find doctors to treat me. If “we” do, there are 4-6 month long waiting lists, appointments are triple booked….each body part is treated by different specialist, and of course, none of them communicate with one another. How delightful! This is why I need YOUR HELP. With YOUR HELP, I will start a webpage that lists all the doctors that have successfully diagnosed and treated every dysautonomic, spoon, POTSie and anyone suffering from any incarnation of an Autonomic Nervous System Disorder/Condition/Dysfunction ever known.

I know this has been tried before on certain social media sites – but something needs to be done NOW!

I am at the end of my rope.

No human being should have to go through the humiliation and agony of being misdiagnosed and tossed aside by physicians as if you were a piece of trash. No one.

I will make a webpage that can guide people to doctors that specialize in ANS disorders that will help diagnose their symptoms and not placate them with platitudes and frivolous dx’s of “anxiety” and “dehydration.”

Now that I think about it – I will make a webpage with recommendations of ALL the fantastic, helpful, and understanding doctors that have been helpful for the conditions that I have suffered with. 

If you hear me – if you understand this frustration and have sat in the bottom of the Pit of Despair thinking there is no way out…… Then PLEASE share your doctors’ demographic information with me so that I can create a true HELP Page for people like us…

Just think of all the people you will be helping…and possibly saving…

THANKS!!

Day 7

This is another reformatted and edited blog from last years WEGO Challenge – we need some variety, WEGO!!

DISCLAIMER: Sarcasm below. If you don’t like the truth shrouded in sarcasm, please don’t continue. This post is in no way meant to disrespect the medical profession, but is simply intended to draw attention to the paradigm shift in doctor-patient communications in the 21st century, and how patients should adapt to the change.

Headline: Doctors are not Gods – World is shocked.

After todays announcement...this attitude will be changing.

After todays announcement…this attitude will be changing.

Millions were shocked today when headline news agencies around the world announced the results of an 18-month undercover operation by local news investigative reporters: doctors don’t know everything! Recent examination of the plethora of anecdotal accounts now present on the Internet show that many doctors may be treating patients based on what what’s covered in medical school, and what they learn through the research of their colleagues, not on the divine communication with the collective unconsciousness or their ancestors.

The historical, paternalistic manner in which we, as consumers of health care were “taught” to deal with health care professionals is no longer a valid, efficient or recommended manner in which to approach the doctor-patient relationship. There are so many new illnesses, syndromes and disorders being classified and redefined each year. Existing diagnoses are now more thoroughly researched than ever before in history, so there is no possible way that doctors could amass all this information in their brain for easy retrieval when a truly challenging patient walks through the door. This means that a human neurologist could not possibly be an expert on diagnosing all conditions that may fall under the heading of his or her speciality. Therefore, looking to doctors to tell you exactly what do, no questions asked, is no longer the recommended approach to being a mere patient.

As healthcare consumers, we have the right to ask questions and get logical, cogent and informed answers. A good doctor that doesn’t know the answer to a question – one that has realized and accepted his non-deity status and human form – would likely research the question on the professional internet sites created especially for them, and get back to the patient with an answer. Or, if faced with a diagnostic challenge, the professional should refer the patient to a known specialist with research credentials, not just a dude with a schiester-esque website.

Doctors that have not received the “you are human” memo still treat their patients as if they were ignorant children, minimize the importance of the patient’s questions and proceed with a “just do as I say” lecture. Not good. If this happens, please seek out another physician that doesn’t have this attitude.

With clinical research information being widely accessible by all thanks to the Internet, patients are now bringing in research articles to their doctors and asking them for their professional opinions on what they have found. This was an essentially unthinkable act 15 years ago. After all, how DARE you think you know something the all-knowing doctors don’t know! The horror! Many doctors are embracing this – it saves them research time, gives them a jumping off place to start their own inquiries, or even (do I dare say) teaches them something new they may not have heard about!!
My husband often tells me not to bring up the research I find on my weird and rare issues, stating that “I don’t want to anger the doctor.” REALLY? Trying to advocate for the best health care possible is something I shouldn’t do because the doctor may be annoyed? If any of my doctors DID become annoyed, they would no longer be my doctor. It’s just that simple. I wouldn’t want an annoyed doctor to try to hit me with a bolt of lightening, or some other god-like anger response.

So, embrace the finding that doctors are really NOT the Gods they once thought they were, and proceed boldly, asking your doctor questions, researching your conditions, and even bringing in the professional research you’ve found that pertains to your condition (as long as it is not an article from Dr. Oz, Dr. Phil, WebMD, Wikipedia or a Facebook forum) and sharing it. It could actually mean the difference between a quality life, and a life not worth living.

Headline: Doctors are not Gods – millions shocked to learn the truth!

DISCLAIMER: Sarcasm below. If you don’t like the truth shrouded in sarcasm, please don’t continue. This post is in no way meant to disrespect the medical profession, but is simply intended to draw attention to the paradigm shift in doctor-patient communications in the 21st century.

Millions shocked when they find out doctors don’t know everything! Recent examination of the plethora of anecdotal accounts now present on the Internet show that many doctors may be treating patients based on what what’s covered in medical school, and not on divine communication with the collective unconsciousness or their ancestors.

The historical, paternalistic manner in which we, as consumers of health care were “taught” to deal with health care professionals is no longer a valid, efficient or recommended manner in which to approach the doctor-patient relationship. There are so many new illness, syndromes and disorders being classified each year, existing diagnoses are now more thoroughly researched than ever before in history, so there is no possible way that doctors could amass all this information in their brain for easy retrieval when a truly challenging patient walks through the door. This means that a human neurologist could not possibly be an expert on diagnosing all conditions that may fall under the heading of his or her speciality. Therefore, looking upon doctors to tell you exactly what do, no questions asked, is not the recommended approach.

As consumers of healthcare, we have the right to ask questions and get logical,cogent and informed answers. A good doctor that doesn’t know the answer to a question – one that has realized his human form – would likely research the question on the professional internet sites created exactly for them, and get back to the patient with an answer. Or, if faced with a diagnostic challenge, the professional should refer the patient to a specialist. Docs that have not received the “you are human” memo still treat their patients as if they were ignorant children, minimize the importance of the patient’s questions and proceed with a “just do as I say” lecture. Not good. If this happens, please seek out another physician that doesn’t have this attitude.

With clinical research information being widely accessible by all thanks to the Internet, patients are now bringing in research articles to their doctors and asking them for their professional opinions on what they have found. This was an essentially unthinkable act 15 years ago. After all, how DARE you think you know something the all-knowing doctors don’t know! The horror! Many doctors are embracing this – it saves them research time, gives them a jumping off place to start their own inquiries, or even (do I dare say) teaches them something new they may not have heard about!!
My husband often tells me not to bring up the research I find on my weird and rare issues, stating that “I don’t want to anger the doctor.” REALLY? Trying to advocate for the best health care possible is something I shouldn’t do because the doctor may be annoyed? If any of my doctors DID become annoyed, they would no longer be my doctor. It’s just that simple. I wouldn’t want an annoyed doctor to try to hit me with a bolt of lightening, or some other god-like anger response.

So, embrace the finding that doctors are really NOT the Gods they once thought they were, and proceed boldly, asking your doctor questions, researching your conditions, and even bringing in the research you’ve found (as long as it is not an article from Dr. Oz, Dr. Phil or WebMD) and sharing it.

The End.

This has been a banner year for my soapbox. I’m getting more and more used to spending time on it. Now, if only people would LISTEN….

Being “blessed” with a bucketload a unusual conditions, I’m not short on subject matter. But, It’s not the actual conditions I usually blather on about – its the medical professionals, and the damn governmental interference in our health care choices and well-being.
Having strange conditions require a patient like me to familiarize themselves with the research being done on the conditions from which we suffer. This does not take a lot of time, thanks to the miraculous invention called the Interweb…errr, Internet. Since everyone 10 years and older has a phone that can access this miracle information retrieval system, there is absolutely NO EXCUSE why anyone should be uneducated about their medical condition, and NO EXCUSE why any medical professional can’t do a simple search on Medscape, PubMed or even Wikipedia to try and help a patent like me. I can find a helpful article relevant to any of my strange disorders in less than 30 seconds. Tell me then, why can’t a doctor do the same thing? Do they think they know everything? Do they not trust the information in their own peer-reviewed journals on the web? And don’t DARE say they don’t have time. The time it takes for any of my docs to disagree with me about my symptoms (really?? I’m experiencing them – they actually think telling me I’m NOT helps me?) or give me the deer-in-the-headlights stare when I start speaking their (not-so-exclusive) language takes more time than running a quickie search. You have the technology – USE IT!

My other recurrent theme is government intervention in our healthcare. The feminists of decades ago said it best, “keeps your laws off my body!” That goes for all the sneaky stuff incorporated into the ACA (Obamacare) that some people blindly embrace as “a good thing.” Yes, there are good things in the ACA, but have YOU read the 2500 or so pages contained in this scary piece of legislation? I have. You would be horrified to learn what I know. Some of the mainstream medical blogs address these issues from a doc’s point of view, which make me happy, and to which I quickly and eagerly add my comments. One particular doc for that writes for HealthworksCollective is ballsy enough to remove ALL of my comments, while others have been gracious enough to welcome the viewpoints and opinions of “an educated patient.” We are the consumers of healthcare. Most of us pay thousands a year for our health insurance. We have the right to choose our diagnostics and out treatments. In no way, shape or form should a sitting president of this country tell us what tests we can or cannot have – or what treatments are appropriate for us. How DARE the government lump the citizens of this country into neat little categories, which conveniently leave out people like me with uncommon disorders and conditions. If you don’t believe me, then you might want to look back into my previous blogs and see what damage has already been done. Just a few examples: Mammograms are limited. Back pain has been relegated to neat little boxes that limit the diagnostics and treatment for anyone suffering from back pain. The “most common” health challenges US citizens are faced with are being examined by an agency called the IOM (Institute of Medicine) – and are telling doctors the THREE best treatments for these conditions. What if you or your loved one isn’t helped by these? Oh well, too bad. You may point to the sources of the recommendations and say, “these aren’t from the government.” Oh, but they are. The ACA has tasked several quasi- and non- governmental “health” agencies (the IOM is one of them) with studying “the most common conditions” and asked for “recommendations.” It is these very recommendations that insurance companies latch onto and use as the basis for denying any but the recommended treatments, regardless of their insured’s health status. It’s happened to me. It’s happened to friends of mine. Standards of care are being ignored and these recommendations are being embraced. For example: BCBS of MA recently denied MOHs surgery for suspected basilar cell carcinoma on my friend’s face. They claimed they “never heard of it!” She had to gather research and practice guidelines to submit to them to prove it was THE standard of care for the treatment of suspected basilar cell carcinoma, especially for facial lesions. I also gave her info that my father-in-law, covered by BCBS, had had MOHs at least 5 times just this year. (Somit was total BS that BCBS had “never heard of MOHs.” It was finally approved, and yes, she DID have cancer. NO PATIENT, especially one that has to pay thousands a year for health insurance, should be forced to do her own research like this – it’s ludicrous. But, we have the ACA to thank for these new glitches in our already confusing matrix. Naysayers say we have to take the bad with the good, referring to the ACA provisions. I say NO, WE DON’T.
Patients, educate yourselves on your conditions.
Doctors, pay attention to what your patients are saying. And while you are staring at them in disbelief, try doing a bit of research of your SmartPhone – what you learn may surprise you.
And Obama, keep your laws off my body.

Since the past 2 posts I have made were pretty “heavy,” I am going short today. I learned long ago that in order to receive the best care, I needed to “Keep Calm and Research it Myself.” Your doctors probably won’t. Scary, huh?

My favorite “medical professionals” blogs, and why I follow them:

Medscape Week in Review (and others) – I prefer to follow blogs targeted to the medical professional. Since I have to search consistently for info about my conditions, these blogs provide me with current and relevant info I can confidently bring my doctors. It’s free to join Medscape, and there are many topical “newsletters” to follow. I list the Week in Review choice here since it covers all the stuff I’m interested in learning about in one place, based on the selections I made when I joined the site. I highly recommend it for ALL health advocates. You will be shocked at some of the things you read – the ridiculous new diagnostic and treatments recommended by non-governmental and quasi-Governmental agencies shock me the most. Learn how YOUR health will be effected due to the ACA requirements the mainstream media doesn’t talk about!!!

painEDU.org – a physician/healthcare provider website that has a weekly blog-type newsletter about the world of chronic pain. Learn what docs are being told about YOUR pain conditions and how to treat them. Informative, necessary info for anyone with pain conditions.

HealthworksCollective.com – the bast I saved for last! This is a blog/newsletter that compiles links to other blogs/newsletters written BY doctors for doctors. Although, most don’t mind hearing from patients in their comments (although one write routinely deletes all my comments – how ruuuude!). I’ve learned so much from this blog – their focus is on all the stuff trending in the medical communities (coincidentally the stuff I love to learn about – such as the truths about the ACA and how it’s effecting docs and patients negatively; new guidelines that are being issued by non-govermental and quasi-governmental agencies that are limiting YOUR care in the future, EHRs, docs on social media, evidence p-based medicine, etc.). This one is “mos def” a “Join” for anyone interested in healthcare advocacy or the future of their healthcare.

Please check these out!!