[hypomaniac-eric]

It always seems like the doctors and nurses don't like me researching medical stuff online. I learn so much and when i share what i know with the doctors either they dismiss it because it's "from the internet" or because it's not mainstream enough for them to know about it.
Funny thing is there's lots of articles and info and current research from doctors on the internet.

I about got into it with the pdoc nurse on the phone today because she said i can't take Lamictal again because i had a small rash. i told her i saw on youtube videos and articles on the internet that many people retry the med later and are fine. she says what i read on the internet isn't always true. I told her i read it and heard about it from different sources but she says anyone can say they're a doctor. i digress. Does anyone else have issues talking to doctors about stuff? Isn't it true you can restart Lamictal at a later time and have a good outcome? I thought i read numerous times in forums people saying they restarted it with good outcomes. i think i read somewhere or in a video that there's a 80% chance you won't get a rash when you restart it.

[Ripose]

I think Drs. are wrong more often than the Internet. I have read the same thing about restarting Lamictal as you.

[BeyondtheRainbow]

I was in a clinical trial for lamictal and the doctor who ran the study re-starts lamictal after the rash unless some criteria aren't met. I don't remember them now (although I was not allowed to try a re-start by his criteria so I'm thinking proximity to mucus membranes? I had the rash on my mouth and eyelid) but my understanding is that his recommendations are typically followed since he is an expert on lamictal. But my rash was a long time ago (10 years almost) and the trial was 15 years ago so it all may have changed.

[Naynay99]

Hey- not 100% sure about restarting lamictal after a rash. I feel like I remember my old pdoc had said most rashes aren't the death rash (Stevens johnsons) but that drs sometimes are over careful.
Anyway, I have had experiences of condescending psychiatrists who do not seem to like their patients to be informed and ask questions or have an opinion that differs from their own. My first pdoc was a jerk who kept naysaying every time i questioned or contradicted him. I got really sick after weaning off Effexor (days of puking, headaches, chills, etc) and called him saying I had read ppl can have a hard time coming off of it and he said in no Uncertain terms that stopping Effexor at the dose he did would NOT cause any withdrawal symptoms! Like i was making up the physical symptoms i was experiencing.

A different pdoc seemed to encourage or at least respect my curiousity and well readedness on mental health stuff. I would ask him qs from something I read and he would politely discuss it with me, and not treat me like I was an idiot. My current pdoc unfortuately is not like that. I think some doctors feel threatened or maybe are used to treating patients who are unable to advocate for themselves. But I'm not stupid- I have a science undergrad degree, a masters, and almost went to vetinerary school. So yeah, I sympathize with practitioners assuming that we are idiots who are getting our online information from answers.com or Wikipedia or something. Sigh. My

If you really want to retry lamictal, I would suggest you find and print research backing your argument up, from reputable and recent research studies in academic journals and primary sources. Or else, get a second opinion. But just because somebody has a medical degree does not always mean they are right. Good luck.

[hypomaniac-eric]

Originally Posted by Ripose

I think Drs. are wrong more often than the Internet. I have read the same thing about restarting Lamictal as you.

I live in a small city where the real good Dr's are hard to find. i have symptoms of Orthostatic Intolerance and my old physician and new one doesn't know as much about it as me and won't test me for it even though i have symptoms. they say it's not bad enough if i'm not fainting. i guess the dizzy spells just picking up the house to vacuum don't count. it's worse at certain times of the year then others. i also have CFS and OI is part of the symptoms. I even tried telling the old doctor and new doctor about the leading researcher of OI and to watch his lectures on YouTube so they would know more about it or call him but they didn't say anything. The leading researcher, Dr Peter Rowe said in a lecture he would take calls from doctors to help with information about the disorder since OI isn't known about in the mainstream.

and my pdoc is pretty nice and i like her. i think her nurse is more skeptical of my "internet research" then she is. i once had a pdoc one time get mad and tell me he's the one with the degree on the wall i didn't like him. My old dr once told me to let him be the dr and let me be the patient.

Originally Posted by Naynay99

I feel like I remember my old pdoc had said most rashes aren't the death rash (Stevens johnsons) but that drs sometimes are over careful.

Yeah, somehow I can see being a little over-careful under circumstances involving something called "the death rash".

[Naynay99]

Lefty- ok. point taken. lol.
As a public service announcement, I should probably point out that I am the one who coined the dangerous lamictal Steven Johnson syndrome rash as "the death rash"...I don't think they call it that in the literature!

A couple of thoughts. There's good, bad and indifferent online. And IRL. There's difference of opinion. Neither are worthy of unwavering allegiance.

A big thing to keep in mind is how things are presented can make a big difference in how they are received. It's important not to come off like you think they don't know their own job. And that you do. No one likes that, no matter what their job.

Maybe you have read about something. Go ahead and say what it is. If they have a different opinion, ask why. Listen to them. For real. Because they are right? No. Because you want them to listen to you, and they're not going to be inclined to do that if you're not extending them the same courtesy. Also, like it or not, they do have experience that you don't.

You're aiming for a partnership, yes? And what that wouldn't look like would be you telling them what you think you have, what tests they should run and how they should treat it. It isn't a restaurant.

I don't know for sure this is the dynamic, but the two examples you gave make me wonder. Like "about got into it" and the other a situation where you have a symptom, which you have "pre-dx'd" for them as to cause and what test they should run and who and what they should read to educate themselves so that they can know as much as you.

I like Naynay's idea of printing out a bit from reputable sources. Don't go overboard though.

I'm not saying any if this to be harsh. Whoever is "right", I don't really care and won't presume to take a side. My angle/point is that it sounds like you *might* be hurting your own cause unwittingly. Might be a matter of tweaking communication techniques a bit in order to feel more heard. (And remember! Hearing doesn't mean agreeing. If someone doesn't agree, it doesn't mean they don't hear you.)

Good luck! Here's hoping for truly working together for your best health.

[Fuzzybear]

No they don't... I've found that both doctors and therapists don't like me researching

I'm of the opinion one shouldn't be 'dr googling'. It is a recipe for disaster. Also, so much of what is on the internet is not the truth. Many 'medical journals' are not what they seem; there is a real problem with a high volume of them popping up that have no veracity at all. You are best to talk to your healthcare team about concerns you may have, asking them reputable sources they can point you in the direction of.

*raises hand slowly*. I'm another one whose been instructed not to look things up and I don't think there is anything at all wrong with doing so for most people, including me most of the time. Doctors seem to forget that they work for us. We are entitled to a say in our care and an understanding of what we are dealing with. For some, internet doctoring can be harmful and pathological but for others, it can save their life. I'm not a moron and while I'm sure I've fallen for hoax style information a time or two, it's rare. I'm thorough in my research and I look at data from many angles and sources before jumping the gun. If I bring something up to my doctor, I expect him to listen to my concerns and if I'm misinformed, for him to treat me like an intellectually capable person and explain what I don't understand. If he dismisses me outright because I read it in the internet, he's not the doctor for me. This is my attitude and opinion going forward.

[Naynay99]

Interesting hearing people's views on this.

I agree with innerzone that tactful communication and delivery is important. If you treat your health care team disrespectly or like you know everything, yeah the response will probably not be a desirable one. But I didn't get that impression from the OP message. I mean my complaining about past crappy drs sort of makes me sound like an asshole, but that was me ranting. I would never tell them "I have a graduate degree and I read a lot. I am right and you are wrong!"

I get drs being annoyed when patients come to them with some info they learned from a commercial or googling crap. It must be frustrating. But I also know that when parents come to meetings with lots of educational ideas and inaccuracies, that I treat them with respect and patiently listen even if they have no idea what they are talking about. Because it is my job and I am not a **** and people are just trying to be informed and feel some sense of control. And I do think That some psychiatric medical professionals really do dismiss us and treat us like **** because of our disorders. Talk about being stigmatized! It demoralizing and I think they should be called out on it. Sadly, there are a lot of bad doctors out and here and sometimes you have to advocate for yourself even if it is hard and uncomfortable and not welcome.

[JustMelancholy]

I tend to give a certain latitude to whom ever I see, I do my research and speak my concerns and I listen to what their argument is. Most doctors know what they are talking about, some however just like power over others.. Rare though. If a Doctor says you should try something else, you should at least meet him half way and try something else and if that fails you can discuss going back on what ever you were taking before, it's a process.. It starts with trust, and if you have a good doctor he/she will start to trust you in time.. I hope this helps, 30 some I have years of being a psych patient..

[bizi]

I just sent a note to my pdoc saying that my new Therapist think I may be ADD and that I could be tested. and that a new medication may help. What does she think about that?
I have only seen my new therapist 2 times and she said I exhibit classic ADD symptoms. I have seen my pdoc for 15 years....she mentioned in the past getting tested...I did not think it was necessary...so I declined.
We shall see how she responds...She will get my note next week.
bizi

[hypomaniac-eric]

Originally Posted by bizi

I just sent a note to my pdoc saying that my new Therapist think I may be ADD and that I could be tested. and that a new medication may help. What does she think about that?
I have only seen my new therapist 2 times and she said I exhibit classic ADD symptoms. I have seen my pdoc for 15 years....she mentioned in the past getting tested...I did not think it was necessary...so I declined.
We shall see how she responds...She will get my note next week.
bizi

i was DX'd ADD before 8th grade. I"m not sure at what point it became Bipolar or I became Bipolar 2. But i noticed my seasonal mood patterns in high school. i noticed the pattern around my junior year. i think the pattern was since 9th grade. and being on anti-depressants and ADHD meds probably brought out the bipolar. i didn't get a DX of Mood Disorder NOS till a few years after high school. and found out last year that it was changed to Bipolar 2 since the DSM was redone.

[passionfruit3]

Doctors in general don't like to be questioned about what there doing cause they are to proudly a lot of them.i read this article a little boy came in to the emergency room very sick he had a black bruise on his leg doctors assumed it was some type of cancer so they started doing testing but couldn't figure it out till the boys condition worsen and he died later?the first thing the mother had said when she brought her son in was it looked like a spider bite.but they didn't listen.upon the autopsy turns out he was bitten by a brown recluse spider.her son could have been saved.doctors think they know better and sometimes they do but I don't see why they don't listen to there patients when we know are symptoms and in therapy we know ourselves

[scatterbrained04]

I work in a doctor's office and can tell you first hand that a lot of patients walk in having "diagnosed" themselves on the internet incorrectly or believe incorrect information. Or old information. Doctors get annoyed with dealing with this. If a patient is so certain they are right then they should just treat themselves. That being said, I don't think researching is totally a bad thing, but you have to be careful and respect the fact that doctors have a lot of knowledge and real world experience. It's ok to bring things up but be respectful while doing it.

We once had a woman in our office call one of our doctors an idiot because she didn't diagnose her with the same thing she had diagnosed herself with. Only our doctor DID diagnose her with the same thing. The woman was using the old name for the condition that no one has used in 30 years and wouldn't except the new name for an answer!

[Moose72]

Originally Posted by scatterbrained04

We once had a woman in our office call one of our doctors an idiot because she didn't diagnose her with the same thing she had diagnosed herself with. Only our doctor DID diagnose her with the same thing. The woman was using the old name for the condition that no one has used in 30 years and wouldn't except the new name for an answer!

How embarrassing.

[bioChE]

Doctors deserve our respect, if only for the fact that they're intelligent and made it through med school. Like others have said, not only do they have academic knowledge but they have a lot of real world experience to boot. If I walked into my doctor's office and proclaimed what google and I had diagnosed, I'd not be listened to or worse. There is a certain amount of knowledge we can gain by researching on our own, and that should be done if you care to know more about your condition and medications.

The fact remains that working with psych conditions is a partnership of your experience and the doctor's knowledge. They have the final say when it comes to medications, and we have to respect that fact. If after trying your best the doctor's treatment isn't working, it's time to find another doc. This sucks, but sometimes it's necessary.

The best reading I've done, after informing myself of my condition, is to read the prescribing information that is available for every medication. I'm not talking about the patient information that the pharmacy sticks in with your meds, but the full brochure showing the studies, side effects, contraindications, and everything else the docs use to inform themselves. These documents are a treasure trove of information, far more than a doc can lay out in a 15-minute session. It's clear, concise, and if you care about what you're taking it's a good read. Do yourself a favor and look it up, you'll learn more about your meds than you could ever want to know. You'll also learn about important side effect profiles that others have experienced during clinical trials.

BioChE, you are speaking of PI sheets, yes?

[bioChE]

Originally Posted by Innerzone

BioChE, you are speaking of PI sheets, yes?

Yes I am. They sometimes come with your meds as little scrunched up bundles, or they can be found on the web either on the manufacturer's website or other sites that compile drug information.

[Fuzzybear]

I agree drs deserve our respect. But I've had some bad psych nurses and pdocs. Luckily I have a good one now. But I had one just abandon me bc I was getting akathisia from latuda and refusing to take it. I didn't know it was akathisia at the time. She just ignored I was having akathisia. Then the next psych nurse I had was a running a pill mill. It was horrible. He was trying to convince me to go on adderal. I don't need adderal. I would go manic so fast. He ended up getting busted. Then the one before the one I have right now, would only give me zyprexa in high doses to sleep. He wouldn't try anything else. Now I take trazadone for sleep. He was too set in his ways.

So some are bad doctors or nurses. I hope my new psych nurse stays at the clinic I go to. And if I didn't do the research, I would have never figured out that it was akathisia that I was having.

[Sometimes psychotic]

Problem is there is the death rash and maybe you don't have that but what if its an allergic reaction---those can spontaneously turn serious like anaphalactic--- the thing is they could have explained the danger to you.....