How do you get your doctor to realize you actually are sick?
July 29, 2013 3:01 PM Subscribe
I am sure I had a cyclospora infection.
I had all of the symptoms. My brother-in-law (in another state, about 10,000 miles away) had the same symptoms. He was tested and the test came back positive. It started with a fever of about 102 for 3 days, watery diarrhea, fatigue, bloating, cramps. Then this went on with a low-grade fever for about two weeks.
After about two weeks of waiting for the illness to pass (as was suggested by the doctor and advice nurse [who also wanted me to listen to an audio tape about diarrhea]), I went to the doctor and said something had to be done, I was still sick. He gave me an anti-diarrheal. After talking to my sister, I told the doctor I probably had a cyclospora infection, like my brother-in-law, and please prescribe some goddamn antibiotics. BTW: It took my brother-in-law 5 trips to the doctor, one trip to the emergency room, and then, another trip to the emergency room via ambulance to finally get diagnosed.
So my question is, what is the magic phrase you use with a doctor to get them to actually do something for you? My brother-in-lay and I should have gotten the antibiotics much sooner.
I had all of the symptoms. My brother-in-law (in another state, about 10,000 miles away) had the same symptoms. He was tested and the test came back positive. It started with a fever of about 102 for 3 days, watery diarrhea, fatigue, bloating, cramps. Then this went on with a low-grade fever for about two weeks.
After about two weeks of waiting for the illness to pass (as was suggested by the doctor and advice nurse [who also wanted me to listen to an audio tape about diarrhea]), I went to the doctor and said something had to be done, I was still sick. He gave me an anti-diarrheal. After talking to my sister, I told the doctor I probably had a cyclospora infection, like my brother-in-law, and please prescribe some goddamn antibiotics. BTW: It took my brother-in-law 5 trips to the doctor, one trip to the emergency room, and then, another trip to the emergency room via ambulance to finally get diagnosed.
So my question is, what is the magic phrase you use with a doctor to get them to actually do something for you? My brother-in-lay and I should have gotten the antibiotics much sooner.
This is not meant to be flip, but, get another doctor. Not all doctors are dismissive. I'm also not a physician, but with signs of an infection (fever) and prolonged sickness, I don't think that an anti-diarrheal with no further attempt to find the root of the problem is good standard of care. With certain types of intestinal infections, an anti-diarrheal with no treatment of the underlying pathogen can be dangerous and damaging to the intestine.
I find I get the best response from my doctors if I do a bit of research on my own and come in with an informed approach to discussing my symptoms. And, I'm not afraid to be a bit aggressive if I feel like I'm getting the brush-off or not being taken seriously.
posted by quince at 3:16 PM on July 29, 2013 [7 favorites]
I find I get the best response from my doctors if I do a bit of research on my own and come in with an informed approach to discussing my symptoms. And, I'm not afraid to be a bit aggressive if I feel like I'm getting the brush-off or not being taken seriously.
posted by quince at 3:16 PM on July 29, 2013 [7 favorites]
Response by poster: Doctor did not do stool test. I did not know to ask. Brother-in-law finally had stool test, which was positive.
posted by fifilaru at 3:17 PM on July 29, 2013
posted by fifilaru at 3:17 PM on July 29, 2013
Response by poster: One more thread-sitting comment, I was way to ill do do research or make an informed request for treatment.
posted by fifilaru at 3:18 PM on July 29, 2013
posted by fifilaru at 3:18 PM on July 29, 2013
What has worked really well for me and family members of mine is to say "If you really don't believe that this is an issue, that's fine, but I'd like to document it. Please write a letter on your practice letterhead,explaining that you don't think this testing / treatment / precaution is appropriate, give your reasoning, and sign and date it. I'll need two copies, one for my records and one for my file."
That often makes doctors reconsider whether maybe the proposed whatever is a good idea or not. And if they DO write the letter, then hey, that refusal is documented and you have that information.
posted by KathrynT at 3:24 PM on July 29, 2013 [18 favorites]
That often makes doctors reconsider whether maybe the proposed whatever is a good idea or not. And if they DO write the letter, then hey, that refusal is documented and you have that information.
posted by KathrynT at 3:24 PM on July 29, 2013 [18 favorites]
And if they DO write the letter, then hey, that refusal is documented and you have that information.
What's the benefit of that?
posted by box at 4:02 PM on July 29, 2013
What's the benefit of that?
posted by box at 4:02 PM on July 29, 2013
What is the connection with your BIL? Were you in the same place recently?
It's been 3-4 weeks since you got sick and you still aren't any better? I think a second opinion would be in order.
posted by dawkins_7 at 4:10 PM on July 29, 2013
It's been 3-4 weeks since you got sick and you still aren't any better? I think a second opinion would be in order.
posted by dawkins_7 at 4:10 PM on July 29, 2013
And if they DO write the letter, then hey, that refusal is documented and you have that information.
If you get a second opinion and the second doctor runs the test and you were right, you can take it back to the first doctor along with the letter and tell them they made a pretty big mistake. And if you encounter multiple physicians who ARE willing to sign their name to the fact that your test is unnecessary, then the test might actually be unnecessary.
Truthfully, though, I've never seen it not change a doctor's mind at least a little.
posted by KathrynT at 4:16 PM on July 29, 2013 [3 favorites]
If you get a second opinion and the second doctor runs the test and you were right, you can take it back to the first doctor along with the letter and tell them they made a pretty big mistake. And if you encounter multiple physicians who ARE willing to sign their name to the fact that your test is unnecessary, then the test might actually be unnecessary.
Truthfully, though, I've never seen it not change a doctor's mind at least a little.
posted by KathrynT at 4:16 PM on July 29, 2013 [3 favorites]
Why exactly do you think you have cyclospora? Your symptoms sound crazy unpleasant, but not particularly indicative - practically anything that infects your gut could have those symptoms.
Unless you recently shared a contaminated food or water source with your BIL (He's 10,000 miles away?) there is a vanishingly small chance you have the same rare disease - even with an outbreak happening (so far, about 1 in a million people have been infected in the US). If you have shared a food or water source, absolutely share that with your doctor.
If you are still experiencing symptoms, I would recommend finding an infectious disease specialist in your area. Teaching hospitals would be a good place to start. However, you should be open to the possibility that you have been infected with a different organism, one that may never be identified. your doctor's approach of treating your diarrhea makes a lot of sense - rather than giving you an anti-protozoan (that could make you sicker if you have a virus or bacterial infection) or a barrage of ridiculously expensive and potentially inconclusive tests, your doctor treated what was actually making you miserable.
posted by fermezporte at 6:44 PM on July 29, 2013 [2 favorites]
Unless you recently shared a contaminated food or water source with your BIL (He's 10,000 miles away?) there is a vanishingly small chance you have the same rare disease - even with an outbreak happening (so far, about 1 in a million people have been infected in the US). If you have shared a food or water source, absolutely share that with your doctor.
If you are still experiencing symptoms, I would recommend finding an infectious disease specialist in your area. Teaching hospitals would be a good place to start. However, you should be open to the possibility that you have been infected with a different organism, one that may never be identified. your doctor's approach of treating your diarrhea makes a lot of sense - rather than giving you an anti-protozoan (that could make you sicker if you have a virus or bacterial infection) or a barrage of ridiculously expensive and potentially inconclusive tests, your doctor treated what was actually making you miserable.
posted by fermezporte at 6:44 PM on July 29, 2013 [2 favorites]
With all due respect to KathrynT, who often gives great medical advice in this physician's opinion, if you go the letter-writing route, that is a good way to convince a doctor to do unnecessary treatment and testing. Consider the case of bronchitis, or an ear infection (otitis media). Both of these infections are very common, and are very commonly caused by viruses. Medical professional society guidelines recommend no antibiotic treatment for these infections except under certain circumstances. However, millions of people worldwide still get unnecessary antibiotics for bronchitis and for ear infections, because people get irritable when they go all the way to the doctor and the doctor "does nothing for them", i.e. doesn't prescribe them the antibiotics they think they need.
Giving a single person with a likely-viral infection antibiotics does not affect a doctor personally in any way, except for their conscience knowing that the antibiotics weren't indicated. However, NOT giving antibiotics can come back to bite you personally when your patients submit complaints, and here in the USA, something called a Press-Ganey score (patient satisfaction score) is often used as a basis for physician pay and bonuses. Therefore, it's very little skin off a doctor's back to give you a script if you start getting your knickers in a twist about it, whereas not giving you what you want might cause them harm.
If you get a serious side effect from taking unnecessary antibiotics, like C difficile colitis, or anaphylactic allergic reaction, you're not very likely to submit a complaint about your doctor because of it - you don't think of those things as being your doctor's fault, because you NEEDED those antibiotics, as far as you're concerned...
Anyway, diarrhea's the same way - often viral or self-limited, most of the time doesn't require antibiotics unless it's bloody or the symptoms go on for a long period. In your case, the symptoms did go on for a long period of time, and it does seem that you should have been treated more promptly.
To circuitously get back to the answer to your question, the magic words are:
"These symptoms are severely interfering with my quality of life and my ability to perform my usual activities of daily living."
Any doc who doesn't get more aggressive about treating whatever it is that you're complaining of at that point (or do a good job of explaining why it is they're not getting more aggressive) probably ought to be replaced.
posted by treehorn+bunny at 7:03 PM on July 29, 2013 [23 favorites]
Giving a single person with a likely-viral infection antibiotics does not affect a doctor personally in any way, except for their conscience knowing that the antibiotics weren't indicated. However, NOT giving antibiotics can come back to bite you personally when your patients submit complaints, and here in the USA, something called a Press-Ganey score (patient satisfaction score) is often used as a basis for physician pay and bonuses. Therefore, it's very little skin off a doctor's back to give you a script if you start getting your knickers in a twist about it, whereas not giving you what you want might cause them harm.
If you get a serious side effect from taking unnecessary antibiotics, like C difficile colitis, or anaphylactic allergic reaction, you're not very likely to submit a complaint about your doctor because of it - you don't think of those things as being your doctor's fault, because you NEEDED those antibiotics, as far as you're concerned...
Anyway, diarrhea's the same way - often viral or self-limited, most of the time doesn't require antibiotics unless it's bloody or the symptoms go on for a long period. In your case, the symptoms did go on for a long period of time, and it does seem that you should have been treated more promptly.
To circuitously get back to the answer to your question, the magic words are:
"These symptoms are severely interfering with my quality of life and my ability to perform my usual activities of daily living."
Any doc who doesn't get more aggressive about treating whatever it is that you're complaining of at that point (or do a good job of explaining why it is they're not getting more aggressive) probably ought to be replaced.
posted by treehorn+bunny at 7:03 PM on July 29, 2013 [23 favorites]
And by the way, I'm an emergency medicine doc - the emergency department is not a good place to get your particular sort of diarrhea diagnosed. Stool cultures and testing don't come back quickly enough to result during an emergency department visit. They should be done by a primary care doctor - we're mainly there to provide IV hydration or to correct electrolyte imbalances in severe cases of diarrhea where oral hydration and intake of food is not enough.
posted by treehorn+bunny at 7:07 PM on July 29, 2013 [1 favorite]
posted by treehorn+bunny at 7:07 PM on July 29, 2013 [1 favorite]
There is no magic phrase.
As crazy-making and counterintuitive as this seems, it helps to stay calm and unemotional and focus on communicating the facts as effectively as you can. When I was very ill and dealing with baggage and frustration from months of feeling jerked around by doctors, I tried to use waiting time to kind of "meditate" and try to let go of all that and think through what I was going to say and how I was going to say it. It sucks to have to do that while sick, but doctors are human, they don't want to be dumped on for what other people have done and it won't help your case to come across as irrational or lashing out.
If this was your regular doctor, consider looking for a new doctor that you have some rapport with. A major turning point for me came when I happened to hit it off with an ER doctor who was still a student or doing his residency or something. I explained my weird newish diagnosis (variation of a genetic disorder) and he tried calling a more experienced doctor to get them to review his treatment plan. He couldn't get hold of the other doctor. I told him "Give it your best shot. There isn't anyone on the planet with 20 years experience with what I have. Your guess is as good as anyone's." He gave me an antibiotic I had not had before and although I did not "get well" immediately, I did stabilize and began to slowly improve. After that, I returned to winding up in the ER during midterms, finals, holidays, etc, which was pretty normal for me, instead of being back in the ER every time my latest round of drugs ran out.
Rapport with this doctor made a big difference. I actually saw two doctors that day but did not hit it off with the other one, so it was pretty striking the difference in treatment that resulted. But, also, I understood that medicine is a conservative, risk-avoiding profession and that conservativism was killing me. I convinced him to be willing to act a little aggressively and take a chance on saving my life. By that point, I had a long history of more conservative treatments not working, so it was hardly some crazy suggestion. So, to some extent, you have to have a little patience for the fact that continuing to suffer provides additional info. They just aren't going to break out the big guns until there is evidence that it is warranted and that evidence tends to take time to accumulate. However, you can work on communicating your symptoms and concerns as clearly as possible to try to prevent that process from dragging out excessively.
posted by Michele in California at 9:14 PM on July 29, 2013
As crazy-making and counterintuitive as this seems, it helps to stay calm and unemotional and focus on communicating the facts as effectively as you can. When I was very ill and dealing with baggage and frustration from months of feeling jerked around by doctors, I tried to use waiting time to kind of "meditate" and try to let go of all that and think through what I was going to say and how I was going to say it. It sucks to have to do that while sick, but doctors are human, they don't want to be dumped on for what other people have done and it won't help your case to come across as irrational or lashing out.
If this was your regular doctor, consider looking for a new doctor that you have some rapport with. A major turning point for me came when I happened to hit it off with an ER doctor who was still a student or doing his residency or something. I explained my weird newish diagnosis (variation of a genetic disorder) and he tried calling a more experienced doctor to get them to review his treatment plan. He couldn't get hold of the other doctor. I told him "Give it your best shot. There isn't anyone on the planet with 20 years experience with what I have. Your guess is as good as anyone's." He gave me an antibiotic I had not had before and although I did not "get well" immediately, I did stabilize and began to slowly improve. After that, I returned to winding up in the ER during midterms, finals, holidays, etc, which was pretty normal for me, instead of being back in the ER every time my latest round of drugs ran out.
Rapport with this doctor made a big difference. I actually saw two doctors that day but did not hit it off with the other one, so it was pretty striking the difference in treatment that resulted. But, also, I understood that medicine is a conservative, risk-avoiding profession and that conservativism was killing me. I convinced him to be willing to act a little aggressively and take a chance on saving my life. By that point, I had a long history of more conservative treatments not working, so it was hardly some crazy suggestion. So, to some extent, you have to have a little patience for the fact that continuing to suffer provides additional info. They just aren't going to break out the big guns until there is evidence that it is warranted and that evidence tends to take time to accumulate. However, you can work on communicating your symptoms and concerns as clearly as possible to try to prevent that process from dragging out excessively.
posted by Michele in California at 9:14 PM on July 29, 2013
« Older Car Title transfer from an ELT state to a non-ELT... | My new smartphone was stolen. I want a new one... Newer »
This thread is closed to new comments.
The one-celled parasite that causes cyclospora infection can enter your body when you ingest contaminated food or water. Fresh produce is the culprit in many cases of cyclospora infection. Avoid taking anti-diarrheal medication, because it could interfere with your body's efforts to rid itself of the parasite.
Will your Dr do a stool test to see what is going on?
posted by JujuB at 3:15 PM on July 29, 2013