POZ Community Forums
Main Forums => Living With HIV => Topic started by: BB on July 29, 2006, 01:50:21 am
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Have any of you ever had a doc that seemed to be more interested in proving the value of a drug combo than listening or caring for you?
I know it sounds crazy, but that is the feeling I get every time I go to my doc or see the nurse practitioner. I remember when he told me the stomach cramps and diarrhea could no longer be caused by the meds. He claimed the meds only caused side effects for 6 months, after that the problem was caused by some other culprit. I tried to explain the cramps only occurred after taking the meds, but he still claimed the trouble was caused from something else which he knew nothing about.
I thought he was kidding at first, then realized he was serious. I didn't win points here when I told him I thought he was nuts. Anyway, about 6 months later I get into this new study that cuts the dose of daily Norvir in half and guess what happened to the diarrhea and stomach cramps. Their gone and only occur once in a great while and very briefly at that.
What else bothers me is that when I tell them I'm doing better they seem to assume I'm doing well in every aspect of my life when I'm not. If I try to straighten things out by explaining they simply say "no" and refuse to listen after that point. They are even telling me I can't be having problems because I'm now doing so well.
Does this make any sense to any of you. Has anyone else run into this problem? I've always wondered if the HIV specialist's were under pressure to prescribe or try to prove a new drug combo was OK to use.
This is sad but I guess I need to find another HIV specialist.
BB
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Hi BB,
Not crazy at all. HIV doctors are not gods. They’re just mere mortals like you and me. They can be one track minded. They can also be wrong sometimes.
It’s also true that they can be influenced by drug companies offering perks for prescribing a certain product, which could affect their judgement.
Not all doctors can take a personal interest in each and every detail of a patient's life. They'd burn out fast if they did. Also some are more holistic, while others tend to be more clinically minded.
Daniel
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It's sad, but necessary: get another HIV specialist, one who actually listens to you and doesn't ride rough shod all over your concerns and complexities.
For my care, I go to the HIV clinic at a university hospital. I've seen the ID doctor once in six months (and I've made at least six visits). The ARNP who sees me is very nice but seems unaware/uninformed about lots of things; not exactly confidence-inspiring. And the one time I saw the doctor, he was more interested in talking about his current research, on Hep G as a possibly protective co-infection with HIV, than listening to my concerns. Pretty soon, I'd made an appointment with a well-known private HIV specialist in the nearest big city. A huge difference. Spent two hours at my first visit, an hour subsequently. Paying out of pocket for visits, but it seems worth it, at least for now.
Good luck.
Jay
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Thanks to both of you. I was wondering about myself because this HIV doc is supposed to be one of the best. I'm still very disappointed with this situation. Unfortunately I can't trust him or the ANP because I'm no longer sure of their goals.
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BB, this is one of those tough decisions to make, but you need to go with what your instinct and your brains are telling you. When you aren't in the the kind of responsive partnership you need and deserve to have with your doctor, it's time to find someone who will have that kind of relationship with you. It doesn't matter if your present doc is considered to be a big hoohah.
What good does all of his so-called expertise mean if he's not listening -- I mean REALLY LISTENING -- to what you are reporting. Your quandary is one which has been true from day one of this epidemic. Right from the beginning doctors and researchers weren't listening to what people living with the disease were reporting. It was only after a long hard struggle on the part of activists that it became clear those who are living with HIV have a different level of experience and knowledge about the disease which has to be respected and is useful both in treatment and research.
It's stressful to go through this but I urge you to set about finding a doctor who has HIV experience AND will listen to you in a responsive way.
Keep us posted on how this is going. And good luck. Don't settle for anything less than what you need because it's your health you are fighting for.
Cheers,
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Years ago, when I started Saquinovir, I experienced some pretty pronounced "gut" reactions.
After about two months, I told my doc I couldn't continue with the regimen. She listened.
She switched me to Crixivan. Been on it ever since.
Had I stayed on Saquinovir, I probably would have developed resistance to the PI class of drugs, because they later learned unboosed Saquinovir, which they now call Invirase, isn't a viable treatment option.
Because my doc listened to me and switched me to the newest drug available at the time, I unknowlingly avoided what could have been a serious consequence.
The moral of this story is, if you doc don't listen, kiss him off and look for someone who will.
HUGS,
Mark
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Dear BB,
I sympathise with your problem of a doctor who doesn't listen. I have slightly the same problem, but my (female) doctor doesn't look at me or touch me. Ever! Instead she stares at the computer screen. I have had hardly any side-effects from the combo she first prescribed for me (Combivir/Susitva) and I feel GREAT after 11 months on it. Virus load undetectable from the first check-up. I have no complaints, I'd just like her to look at me once in a while and ask me to stick out my tongue!!
In your case, I wouldn't hesitate in changing doctors because you are not feeling so great.
If a doctor won't listen to your genuine complaints, you must find a different one.
I like my doctor and that correspondant who said "listen to your gut feeling" was right....if there are any nasty vibes, who needs it?
Good Luck,
Simon2
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BB:
Find another doctor and QUICK. Your health is too important to be put into the hands of an unsympathetic "professional." You should not be stressing out over your doc. I remember when I first met my doc and he just listened to me ramble on for what seemed like an hour and then we spent time discussing drug regimens. I was fisrt put on a Sustiva combo and unfortunatley my body didn't like Sustive so much and I ended up in the emergency room unable to breathe. My doctor felt worse about my situation than I did. He hasn't stopped apologizing to this day for a situation he didn't cause.
I grown to care for my doctor deeply and it saddens me that I will be leaving him soon because I'm moving to a new city. I've met my new doc and he seems like a great guy, but I'm still sad. BB, your doctor should be one of your biggest advocates and if you're unhappy with your present situation you should make some changes. I wish you the best.
Joey
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I think it is very important that one has a doctor you trust, and someone you just click with. If your instincts are telling you that the relationship is a bit off, then listen. The doctor might not be a bad guy, or a bad doctor, but for what ever reason it is not a comfortable fit between the two of you. And when dealing with hiv, you need to have a good relationship with your doctor.
Find someone who you can work with, and someone who listens and responds to your concerns.
Christine
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I have an appointment with a new doctor the 17th of August. This group is an independent group of doctors not associated with research or teaching. Hopefully they'll listen to the ramblings and grumblings of an old man and not have their own agenda. I hope this works out, because I'm really in need of a sympathetic and intelligent doctor.
Anyone in Colorado ever hear of Western Infectious Disease Consultants?
BB
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The sad truth is there are some doctors to whom a patient is experimental research data.
Such doctors are not there for their patents.
They are more concerned with research—not good for you.
It’s critical to find one with whom you can develop a trusting relationship.
You should be able to speak comfortably about everything that concerns you.
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I've found a new hiv doc who immediately changed my medication to Atripla. After two days on this med I have no difficult side effects. Why my ex hiv doctor didn't change my drugs immediately is beyond me. Lesson learned!
I guess fame and a good personality doesn't equate with being a good doctor. Unfortunately the combo of drugs I was on will soon be on the preferred list for naive patients. I hope other people have better luck with the drug combo than I did.
Time to move on.
Bill
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I am glad you made a wise decision. Following your advice I bought pills for diarrhea and lots of toilet paper...but as you can see sustiva and truvada don´t give diarrhea... ;D
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Hello Bill, it is good that you found a new HIV Doctor that will listen to you. In fact, you see the results from it, he/she changed your meds immediately! Stay well, get plenty of rest, drink plenty of fluids, and eat a healthy diet.
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Doctors used to be regarded as gods, but with the access to information that the internet now affords, they should, in my opinion, be regarded with respect but more as informed advisors. Remeber that you are the one most responsible for your health. Getting a second opinion never hurts unless your condition is dire and time sensitive. Kudos to you for being proactive.
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Hey Bill,
well done. You're lucky you can change docs! I'm happy this works out well!
Coen