Grrr....Medical System and worried about ds

[Aelwydd]

Warning: long rambly post ahead!

 

 

About 3.5 weeks ago, I started coughing, with really no other symptoms, except night sweats for a few nights. I went to my allergist, who has been very good with my pulmonary issues in the past. She dx'd me with bronchitis, said my lungs were clear (had an X-ray done), but had some bronchial wheezing. She gave me a course of steroids, including a shot in the office, a rx for Bactrin, and sent me home with a refill for rescue inhaler.

 

A week later, the coughing was worse, and I went back. She listened to my chest again, examined me, and considered that maybe the coughing was a result of really bad acid reflux. She gave me a new rx for that.

 

Getting into week three, and I went to my family practice, because the coughing was so bad, I would be gasping weakly for breath after having these violent paroxysms of coughing. Coughing was so bad, I would vomit every. time. I. coughed. They gave me another medication for acid reflux.

 

Finally, last Friday I had had enough. After work (yes, I've been working through it all this time), I went to the E.R., where I got an I.V. for fluids, because I was pretty dehydrated from vomiting so much. Also, they gave me something for the nausea.

 

The PA who examined me got to witness one of my coughing fits, and afterwards he said, "Well, it could be bronchitis, but it really looks like pertussis to me. We are having a lot of cases of it right now, because it's going around."

 

Great. Really?

 

Another doctor examined me, said my blood work was fine, dx'd it formally as "really bad case of bronchitis" and sent me home with a rx for the Z-Pak, another course of steroids, and some cough syrup with codeine in it.

 

After that, I went home and looked up my A&P and Microbiology text books and notes, and got really ticked, because I'd been experiencing almost every symptom described, right down to the pattern of less severe symptoms for the first two weeks, progressing to all-out-lung-expulsion and puke fests of the third week.

 

And all that's to say, I'm really sort of p*ssed, because you know, I went to my doctor. Three times. I took all my medications, as prescribed. And I still ended up in the d*mn ER, and most likely still with the incorrect final diagnosis, since they never swabbed my nasal passages or throat to determine if it was indeed pertussis. The PA is probably the only one who got it right, and how many co-pays and visits did I have to go through just to get the suggestion that maybe this was the case?

 

Because you know, I worked through my illness, and potentially have exposed many people, even though I took precautions like sanitizing my work station and always covering my cough. The fact is, pertussis is quite contagious. BTW, I'm still coughing every day, though the amount of coughing has declined.

 

And now? Now, my son has started coughing a little bit every day. And he has a stuffy nose today (typically, pertussis starts out with cold-like symptoms). I'm taking no chances, I'm taking him to the doctor today to have him examined, and I'm going to express myself very clearly that whatever the Helsinki I have, she (the doctor) needs to d*mn well figure it out, and not just take a shot in the dark. My son has asthma, and he cannot afford to have this kind of illness.

 

 

And, and, and while writing this, I just got a call from my sister, that my nephew is in the doctor's office now with uncontrollable coughing. And he has asthma, too. God. This medical system. So effing inefficient. Thank heavens I have really good health insurance, because as it is, if I didn't, I likely would have thousands of dollars of medical bills just from one stinkin' illness.

 

I have to end this somewhere, so I might as well here.

 

Signing Off.

 

- Typhoid Mary (as my dh now refers to me)

Edited September 25, 2012 by Aelwydd

[Liz CA]

Yikes. Frustrating. Are you now getting meds specificially for pertussis or are you getting better on your own?

[Jennifer in MI]

:grouphug::grouphug::grouphug::grouphug::grouphug:

 

We've been there, done that. The family we caught it from went through the exact same thing you did - including all the medications and diagnoses. I was SOOOO mad when our family came down with it. If they had been properly diagnosed, they could have taken steps to keep it from spreading.

 

I feel SO bad for you and your son. My son, who has asthma, had the worst case, by far, of anyone else in the family. He was on a lot of steroids, breathing treatments, etc. I'd get your son tested and on a round of antibiotics NOW!!! It could make his case less severe and it will make him not contagious.

 

The good news is that at his age, it isn't life-threatening. I know that is little consolation now. But, you both WILL pull through.

 

Oh - and do some research on all the alternative treatments, if you are open to it. I read AFTER my family had it about citric acid (I think) and wish I'd known.

[Whereneverever]

Never mind!

Edited September 29, 2012 by theretohere

[Aelwydd]

:grouphug::grouphug::grouphug::grouphug::grouphug:

 

We've been there, done that. The family we caught it from went through the exact same thing you did - including all the medications and diagnoses. I was SOOOO mad when our family came down with it. If they had been properly diagnosed, they could have taken steps to keep it from spreading.

 

I feel SO bad for you and your son. My son, who has asthma, had the worst case, by far, of anyone else in the family. He was on a lot of steroids, breathing treatments, etc. I'd get your son tested and on a round of antibiotics NOW!!! It could make his case less severe and it will make him not contagious.

 

The good news is that at his age, it isn't life-threatening. I know that is little consolation now. But, you both WILL pull through.

 

Oh - and do some research on all the alternative treatments, if you are open to it. I read AFTER my family had it about citric acid (I think) and wish I'd known.

 

I feel horribly guilty about my nephew. Also, at least two other coworkers have started coughing. I tried not to spread it, I really did! :(

 

You're absolutely right, if I'd had a correct diagnosis, I would have taken several days off from work, and basically isolated myself. But bronchitis is generally not that contagious, if you take precautions like covering your cough. My sputum (yuck) was mostly clear at first, so I thought it was due more to irritation than infection. It only changed color last week.

 

What's the deal with citric acid?

[DianeW88]

Well, I suspected pertussis after your second paragraph, and the vomiting after coughing clinched it for me. It should have been a fairly easy diagnosis for your doctor to make. Were they young? Sometimes docs under 40 haven't seen a pertussis case and it isn't the first thing that comes to mind for them.

 

I'm really sorry, because yes...you have been spreading it to everyone you've come in contact with. Doesn't mean they'll get sick, but the potential is there. It's also really too late to treat anything but the symptoms.

 

Hang in there...they don't call it the 100 day cough for nothing. Oh, and try and guard your ribs a bit if you can when you're coughing....I know it isn't always possible...because broken ribs often happen with whooping cough, and then it becomes excruciatingly painful to have a coughing spasm.

[Whereneverever]

Never mind!

Edited September 29, 2012 by theretohere

[Jennifer in MI]

I feel horribly guilty about my nephew. Also, at least two other coworkers have started coughing. I tried not to spread it, I really did! :(

 

You're absolutely right, if I'd had a correct diagnosis, I would have taken several days off from work, and basically isolated myself. But bronchitis is generally not that contagious, if you take precautions like covering your cough. My sputum (yuck) was mostly clear at first, so I thought it was due more to irritation than infection. It only changed color last week.

 

What's the deal with citric acid?

 

Oh - I didn't mean to make you feel bad! I was agreeing with your anger about the medical system that didn't diagnose my friend!!!! This was during baseball season and she spread it to a lot of the moms and her son spread it to most of the team. You shouldn't feel at all guilty about spreading it - you didn't know! If you had, you would have isolated yourself. This is ALL on the doctors. I'm so sorry about your nephew. How old is he?

 

And, it's ascorbic acid. I don't know how it works or if it works. I didn't read about it until afterward. But, I read people who swore by it.

[Tap]

I agree it is frustrating, but honestly your results wouldn't have likely been changed if you had known.

 

The tests for pertussis are not that accurate because most people aren't getting tested in the beginning of illness. There are both false positives and false negatives. The tests are expensive and the most accurate test takes something like 10 days to get the results from it.

 

The Bactrim antibiotic that the doctor gave you, would have made you not contagious after about 5 days of treatment. It is one of the antibiotics used to treat pertussis. They might have chose a different antibiotic, but Bactrim should have been just as effective. The steroids are a common presciption we see for people who have pertussis so that isn't surprising either.

 

If you cough was getting worse, and you had the pertussis diagnosis, you would have likely been seen by the doctor anyways because....well, you were getting worse, not better like you should have been.

 

 

DD13 has been misdiagnosed all summer with what I think is pertussis too. She has been to the doctor several times and they think that she is getting asthma with her seasonal allergies. BUT to me, it looks just like the symptoms I had when I had pertussis several years back. The only consolation I have with her doctors diagnosis this summer, is that she would have had the same treatment with or without the pertussis diagnosis.

 

 

If you spread the illness, you likely spread it before you went to the doctor the first time. By week 3-4 and a course of antibiotics, it is very unlikely that you were contagious any longer.

[Harriet Vane]

:grouphug:

[Aelwydd]

I agree it is frustrating, but honestly your results wouldn't have likely been changed if you had known.

 

The tests for pertussis are not that accurate because most people aren't getting tested in the beginning of illness. There are both false positives and false negatives. The tests are expensive and the most accurate test takes something like 10 days to get the results from it.

 

The Bactrim antibiotic that the doctor gave you, would have made you not contagious after about 5 days of treatment. It is one of the antibiotics used to treat pertussis. They might have chose a different antibiotic, but Bactrim should have been just as effective. The steroids are a common presciption we see for people who have pertussis so that isn't surprising either.

 

If you cough was getting worse, and you had the pertussis diagnosis, you would have likely been seen by the doctor anyways because....well, you were getting worse, not better like you should have been.

 

 

DD13 has been misdiagnosed all summer with what I think is pertussis too. She has been to the doctor several times and they think that she is getting asthma with her seasonal allergies. BUT to me, it looks just like the symptoms I had when I had pertussis several years back. The only consolation I have with her doctors diagnosis this summer, is that she would have had the same treatment with or without the pertussis diagnosis.

 

 

If you spread the illness, you likely spread it before you went to the doctor the first time. By week 3-4 and a course of antibiotics, it is very unlikely that you were contagious any longer.

 

Your post is a little reassuring, so thank you. You know, I kept my bottle from my first antibiotic, and I was prescribed Biaxin, not Bactrim, as I thought. Which, according to this health department, is considered a viable treatment for pertussis as well. The more I'm reading about it, the more articles I'm coming across where antibiotic treatment is sort of a mixed bag. Sometimes they are effective, sometimes not.

 

Which really stinks. And makes me wish all over again I'd had an accurate diagnosis to begin with, so at the very least, I could have isolated myself. I'm thinking right now of a few weeks ago when I sat around a bunch of people during my son's fitness class. It's a community class, and there are a lot of lower income families that participate. What if I caused their kids or them to get sick and costing them money and time they can't afford? :crying:

[Whereneverever]

Never mind!

Edited September 29, 2012 by theretohere

[Aelwydd]

Oh - I didn't mean to make you feel bad! I was agreeing with your anger about the medical system that didn't diagnose my friend!!!! This was during baseball season and she spread it to a lot of the moms and her son spread it to most of the team. You shouldn't feel at all guilty about spreading it - you didn't know! If you had, you would have isolated yourself. This is ALL on the doctors. I'm so sorry about your nephew. How old is he?

 

And, it's ascorbic acid. I don't know how it works or if it works. I didn't read about it until afterward. But, I read people who swore by it.

 

Don't worry, you didn't inflict any more guilt than I was already feeling. I really appreciate you sharing this information, especially about the ascorbic acid. DH just took the last organic orange in the fridge and juiced it for Jackson. We're going to the store later to grab some more and we'll be having him drink it 3 to 4 times a day to get some fresh Vit. C into his system.

 

I would appreciate prayers/ good thoughts for my son, my nephew, and anyone else I may have unwittingly infected along the way.

[Plucky]

Yep, we've been through that as well. You might want to get the pertussis shot next year. We did this year because it is horrible. The shots don't last long and some don't even work.

[elegantlion]

Goodness, I hope you feel better and that your ds doesn't come down with it like you did.

 

I will say thank you for being concerned about exposing people. I have a permanently compromised immune system and mild respiratory issues. I tend to hibernate in the winter.

[Parrothead]

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1562195/

Ascorbic, not citric. :001_smile:

Okay, so what does this say in English? Yes, more ascorbic acid or No, less is needed?

 

(I tried to read it. Honestly. My eyes glazed over about mid-way through the second paragraph. The book might be the cure for my insomnia though.)

[Parrothead]

Yep, we've been through that as well. You might want to get the pertussis shot next year. We did this year because it is horrible. The shots don't last long and some don't even work.

Can people get pertussis more than once? I thought it was like measles or chicken pox. Once one gets it, one can't get it again.

[Parrothead]

 

I would appreciate prayers/ good thoughts for my son, my nephew, and anyone else I may have unwittingly infected along the way.

Of course. I hope you feel better as soon as possible. :grouphug:

[Sneezyone]

Does the vaccine not work? I thought mostly infants got it (no vaccine) or adults who've lost (or never had) immunity.

[Jennifer in MI]

Can people get pertussis more than once? I thought it was like measles or chicken pox. Once one gets it, one can't get it again.

 

Yes. A person can get it more than once, unfortunately. Immunity wears off. So does the vaccine. And, for some kids, the vaccine doesn't work.

[TravelingChris]

Okay I am really scared about this for both me and my youngest. We both have asthma. Then on top of it, I have Sjogren;s which makes it harder to cough anything out and I am on immunosuppressants. What are the earliest symptoms? I know enough to get into a doctor immediately upon getting sick or call and get the antibiotics. (Yes, I am one of those who has to get antibiotics because I always, and I mean always, have a cold turn into either bacterial sinusitis, bacterial bronchitis or bacterial pneumonia and yes, this has been going on ever since I got my first chronic illnesses and has gotten worse in the last few years). I have also had a partial lung collapse. So I should go and get the immunization. How often should I do that? What else? I just don't want to end up getting hospitalized.

[Whereneverever]

Never mind!

Edited September 29, 2012 by theretohere

[Whereneverever]

Never mind!

Edited September 29, 2012 by theretohere

[Whereneverever]

Never mind!

Edited September 29, 2012 by theretohere

[Serenade]

 

since they never swabbed my nasal passages or throat to determine if it was indeed pertussis.

 

Doctors don't seem to be willing to give diagnostic tests anymore. We've had a nasty virus running through our family, and after four visits to the doctor, we still don't know what it is. Most have been sick for two weeks, and two ended up with bronchitis and antibiotics as a result. But it's "just a virus," and "we don't test for specific type." I've seriously been thinking of reporting it to the state health department for investigation, because this is the kind of thing that puts people out of work, and people who are in poor health to begin with could end up in the hospital.

[besroma]

Praying for you and your family. :grouphug:

[Mommy22alyns]

Oh, man, I would be p*****. I hope you feel better soon and that your ds isn't affected.

[Aelwydd]

Thanks everyone for your thoughts and support! I took Jackson today to see the doctor, and the good news is we think his cough is related to his allergies, and not the result of infection.

 

The bad news is it appears my nephew does indeed have pertussis. The doctors are 90% sure, but they are just waiting for the lab results to confirm it. That takes 3 days, and they have advised my sister to keep him home from school the rest of the week anyway. In the meantime, they have him on zithromax and Delsum, and I'm going to let my sis know about the ascorbic acid. Poor guy has been coughing till he's crying from the pain of vomiting. :(

 

Both my son and my nephew have been fully vaccinated against pertussis, so don't ask me why my son appears to have escaped infection, while my nephew got a bad case of it. Totally arbitrary as far as I can tell.

[Aelwydd]

Doctors don't seem to be willing to give diagnostic tests anymore. We've had a nasty virus running through our family, and after four visits to the doctor, we still don't know what it is. Most have been sick for two weeks, and two ended up with bronchitis and antibiotics as a result. But it's "just a virus," and "we don't test for specific type." I've seriously been thinking of reporting it to the state health department for investigation, because this is the kind of thing that puts people out of work, and people who are in poor health to begin with could end up in the hospital.

 

 

Yeah, I've noticed that trend, too. Why is that??? I've had suspected cases of strep and flu, and instead of testing, they just threw a bunch of meds and figured that would cover it, whatever "it" was.

 

The thing is, it's possible that instead of pertussis I might have had the flu. I have had it before, and I never coughed like I have been, so I think it's unlikely.

 

But, today when I had my ds at the doctor's office, they offered me the flu shot. I declined on the bases that: a, hello, I'm still recovering from illness here, ya really think that's a good idea to throw more crap at my immune system? And, b, what if I've already been infected with the flu? Nobody here can say with certainty that I'm not currently sick with it, because well, nobody's tested me definitively.

 

I'm sure that they have very logical reasons for not testing. I'm just not privy to them.

[Serenade]

Yeah, I've noticed that trend, too. Why is that??? I've had suspected cases of strep and flu, and instead of testing, they just threw a bunch of meds and figured that would cover it, whatever "it" was.

 

The thing is, it's possible that instead of pertussis I might have had the flu. I have had it before, and I never coughed like I have been, so I think it's unlikely.

 

But, today when I had my ds at the doctor's office, they offered me the flu shot. I declined on the bases that: a, hello, I'm still recovering from illness here, ya really think that's a good idea to throw more crap at my immune system? And, b, what if I've already been infected with the flu? Nobody here can say with certainty that I'm not currently sick with it, because well, nobody's tested me definitively.

 

I'm sure that they have very logical reasons for not testing. I'm just not privy to them.

 

I think it's related to cost. But it doesn't seem that cost should be a concern to the provider if someone (or their insurance) is paying.

 

I also wonder if there is a reporting requirement if someone tests positive for certain diseases or conditions? Maybe it's a lot of bother to report? I dunno, just speculating. I remember during the swine flu epidemic, only certain specific clinics were reporting numbers, and people who went to other providers were not even counted in the numbers. It didn't make sense to me then, and it still doesn't make sense now.

 

Sometimes we've had luck requesting a specific test, other times, not. Whatever is going through our family now has kept my DH out of work for nearly 4 days, something that has never happened in the nearly 20 years I've known him. He had a significant fever for 12 days. This is not just an ordinary run-of-the-mill virus.

[ElaineJ]

Yikes! I didn't know the vaccine was so short lived/ ineffective. That is good to know; if we had come down with those symptoms I would never have considered pertussis because we have all been vaccinated against it.

I'm sorry you are dealing with this and had to see so many doctors without a good diagnosis. I hope your recovery from this point is speedy and that your son stays healthy as well. :grouphug:

Elaine

[twoxcell]

Well, I suspected pertussis after your second paragraph, and the vomiting after coughing clinched it for me. It should have been a fairly easy diagnosis for your doctor to make. Were they young? Sometimes docs under 40 haven't seen a pertussis case and it isn't the first thing that comes to mind for them.

:iagree:

I had it back in June and it was horrible. Luckily the kids were all vaccinated and they dodged it.