With all the fuss about flu and flu vaccine shortages, it seems sort of ironic that the thing that's been making our lives hell since the election is not Bush, but a disease for which I was once "fully vaccinated" and which people seem to know next to nothing practical about. So listen up, this may be critical for you or someone in your life....
What does it have to do with politics? Well, let's just say that sometimes when politics takes over the whole "spin" department in the medical world, sometimes the things that get fussed about are not the things that SHOULD get fussed about. Read on, boys and girls, you NEED this info. Pass it along.
It started in early October. My daughter got a "little cold" and I thought nothing of it. It only really seemed to last a few days, but she got a nagging cough that just wouldn't go away. Someone mentioned whooping cough at that time, but as a) she wasn't whooping, b)she'd actually had her DPT shots, and c) she just didn't seem all that sick, we didn't pay much attention. That was mistake #1.
The night of the election I felt "funny" but attributed it to being packed in with too many people at election headquarters and being tired and upset. By the weekend, at the con we went to, I was feeling "mostly" better--as I'm pregnant and generally feel tired and sort of crappy all the time, it just wasn't on my radar. My kid was still coughing, but would go HOURS between coughing fits, and was "fine" between.
Lots of people said, "Oh, sometimes coughs are just like that--you feel fine but they go on for months."
When I came home, it was to discover the whole family was sick. All had diahrrea. Those who ate, promptly vomitted. I didn't vomit much, which was strange, since I'd had morning sickness so much that I was used to it. I didn't connect this to my daughter's cough until weeks later. Everyone was "lots better" within 24-48 hours. I was the least sick of anyone, which seemed strange. But then my "little cold" from the previous week came back, with a vengence. My lungs got very reactive, almost an asthmatic cough, but my asthma meds didn't really help.
As I got sicker and sicker, I finally called a doc. Because I'm pg, the buck got passed a lot until I finally in desperation went in to urgent care. There, I was told that the doctor was "99% sure my problem was just asthma", he gave me a breathing treatment and prednisone, and I persuaded him that I must be sick because I don't get reactive lungs unless I am sick. So he offered amoxicillan. My best guess at that point was atypical pneumonia, which responds better to Erythromycin family drugs, and they prescribed Zithromax for me. This, as it turns out, was the only thing they did right.
The Zithromax immediately helped me feel less sick, the asthma drugs forced my lungs open, but the cough stayed--which is not typical for asthma. After about a week, I contacted my allergist, who saw me, tested me, said, "Are you sure you have asthma? I think you just have a virus" because my lung function was so good, and sent me home.
A few days later, the asthma drugs were clearly triggering coughing bouts. And now, the coughing bouts were SO bad that I couldn't get my windpipe open or breathe for up to a minute. I called the doctors again. This time, a doc heard my cough. He said, "Oh, that sounds like whooping cough." I said, "But I've been vaccinated. He answered, "So?" The fact that my daughter had been sick for weeks and the sound of my cough clinched the diagnosis for him.
So I looked it up.
Basic facts and misconceptions:
First of all, adults don't usually whoop. The fact that I was whooping meant I was more sick than adults usually get. 12-20% of adults with a cough lasting more than 14 days have whooping cough. If the cough is accompanied by vomiting, or "paroxysmal" (fits of coughing) interspersed with feeling fine, the percentage shoots way up.
Second of all, most kids over 10 years old are vulnerable, almost all adults are vulnerable, unless they've had a vaccine relatively recently. Even at peak efficiency, the pertussis vaccine is only 70%-80% effective, and that effectiveness disappears over time. By a couple years after the last shot, something like 50% of kids are vulnerable. And since the "adult and teen" booster is very recent in the US (filed for approval in August of this year, I believe)few adults have had the vaccine. Most kids got their last shot between ages 5 and 7 years old.
And third, most teens and adults don't get very sick with whooping cough. They feel crappy for a few days. It's almost indistiguishable from the common cold or the flu. They may or may not get a lingering cough, and that cough may be as minor as "feeling like you need to clear your throat". My husband spend the whole month of November "getting water down the wrong tube" so often that he wondered if there was something wrong with the tube. Because eating is a trigger, and may be the only trigger (activity and cold air are also common triggers, which is confusing for people with exercise/cold induced asthma), and people feel "fine" between bouts, they may never even associate that "something down the wrong tube" feeling with being sick.
Fourth, people start being contagious just before they start feeling "crappy", like they have a cold, and they stay contagious for up to 3 weeks after the cough starts. The only way to limit this contagious time is with antibiotics--Erythromycin family to be specific. My preference is Zithromax--five days of once a day treatment means it is VERY easy to take all required meds for the appropriate length of time. Antibiotics do NOT shorten the disease length unless given very early (like when you know you've been exposed but are not yet sick), although I do believe they mitigated it somewhat in severity for me and stopped a nasty secondary pneumonia from getting a hold.
Fifth, with all our modern medicine, treatment of pertussis is still primative and ineffective at best. At worst, counterproductive and damaging. Prednisone was probably the worst thing I could have been given--and the fact that antibiotics were given simultaneously probably saved me from the worst effects of having my immune system short-circuited during the acutely ill phase. Over-the-counter cough supressants are of minimal value. Expectorants may be helpful, but may also trigger bouts of coughing. Pertussis "breaks" the coughing mechanism.
Sixth, the people most at risk are babies and the immune compromised. Babies under 6 months old are generally not resistant to pertussis (even if they've had two shots) and don't necessarily even cough--they just stop breathing and turn blue. Pregnant women in the 3rd trimester need to be most pro-active. I was lucky. I got sick in the second trimester. By the time my baby is born, I'll be temporarily immune, so will the rest of my family. This will be protective for the baby.
Okay, so what did help?
- Fluids, particularly hot fluids. Hot herbal spice teas were better for me than chamomile (which promotes phlegm) or peppermint.
- Robitussin (plain) helped loosen phlegm which meant I didn't always have to cough so hard to get stuff up. Pertussis makes phlegm like glue--it's sticky and difficult to move, and the disease damages the cilia which normally move mucus through the lungs without coughing. This means you have to be very careful about suppressing the cough--I didn't even try until most coughs were not productive but were in danger of creating apnea.
- Robitussin DM helped a tiny bit at the worst of it, but NOT as most people expect DM to work for cough. Usually, it tells the brain to stop coughing. But in my case, it merely stopped me from getting so deep into coughing I couldn't breathe in... which made the cough more productive. I used Robitussin DM until I noticed that right after taking it would be my worst coughing bouts. Shortly after stopping, I broke a rib while coughing, so hard to say if that was a good decision or not. I suspect that would have happened anyway--the cough wasn't "easier" with the dm, just less panicky.
- Codeine helped a LOT... does not totally eliminate the cough, but knocks back the frequency to something more managable. Each coughing bout is still bad, but I only have a few per day, rather than many, and they are almost always productive. Better, it's a pain reliever, which meant that my broken rib wasn't always completely unbearable.
- A cheap, easy, tasty, nonsedating cough remedy not quite as effective for me as codeine was cocoa. I'd mix it with honey, to taste, and hot water (no milk--dairy encourages phlegm and must be avoided for the duration). Theobromine is being studied and initial reports indicate that it is VERY effective as a cough suppressant. The study I saw said "more effective than codeine" but my experience does not bear that out. It helps--don't get me wrong, but not as reliably as codeine. Dark chocolate is also effective but much higher in calories.
- Rest has been critical. As much sleep as possible. My daughter had been functional but coughing for about 7 weeks when she sort of "collapsed" and started falling asleep at odd times, so I kept her home for a week just to let her sleep when she needed. It helped immensely.
- For me, because I already had sleep apnea and a CPAP machine to treat it, I found the CPAP to be invaluable to help get me breathing again after a particularly bad bout of coughing. It felt, at the worst, like I needed a crowbar to get my windpipe open (but unlike with asthma, my chest was not tight and there was plenty of breathing room if I could get air in at all...) and the CPAP's pneumatic stent provided a handy crowbar. During the worst of it, I never got far from my CPAP and never turned it off. I only wore it when trying to sleep or recovering from a bout--but if I started coughing and couldn't catch my breath, I could just pick up the mask, put it on, and it would force my windpipe open and get me breathing before I turned purple.
What does the pertussis cough feel like?
It always starts as a "tickle" that makes me feel like I need to clear my throat. Sometimes I can put that off a little while, but as soon as I give in to the feeling, I go rapidly from throat clearing to spasmodic coughing. Uncontrollable. I'm usually able to "brute force" my way through coughing or sneezing to get it under control fast--not this one. Getting my windpipe open without the CPAP was, at the peak, a supreme act of will that was not always effective. It was not until I was seeing stars and turning purple while coughing that the doctors were willing to "risk" cough suppressants for me due to the pregnancy. It was not until I broke a rib that they were willing to treat me with narcotic cough suppressants.
At its worse, I had classic "whooping"... I would cough until the air was gone, then try to breathe in through a closed windpipe, leading to a high pitched, loud "whoop" sound as the air dragged across my larynx and closed windpipe. Swallowing air during this was common, so was excess salivation, both of which often triggered gagging or vomiting. Coughing leading to vomiting is a classic symptom. Once I'd recover my breath, I'd be fine for anywhere from 30 minutes to 3 hours. Then the tickle would come back. Sometimes, I'd let myself keep coughing until I did get up phelgm, because if I could get rid of that, it would often be longer before the next bout. My family, until I broke a rib, got used to "cupping" my back (pounding with a cupped hand) to help loosen things up, whenever I'd start coughing. Sometimes I'd have them do that when the tickle started.
The cough is gradually decreasing in both severity and frequency. One of the bright sides of whooping cough is that while asthma sufferers are more likely to get it, it often improves asthma symptoms for a while after it's gone--and indeed, I've been totally off all inhalers since shortly after I started whooping, and have had no chest tightness. The down side is that the cough can "relapse" with any upper respiratory disease for up to a year afterwards. It is known as the "100 day cough"... and I believe it.
So how likely are you to get it?
Pretty likely. How likely are you to get accurately diagnosed? Not very.
Look at it this way. I personally know 8 people who have it or have had it in the past few months. Of us, only one has been lab confirmed. Only three of us have been remotely sick enough to "bother" trying to figure out what was making us sick. The other 5 diagnoses are by inference given timing and proximity--their illness duration ranged from 2 days to 4 weeks, in severity from "very sick for a couple of days only" to "sick for a couple days, followed by occasional coughing for weeks." Only one of these people (the one who was lab confirmed) got antibiotics early enough to mitigate the course of the disease.
I went to a convention with my daughter while she was still contagious and when I may or may not have been. Something around 1600 people were probably exposed then. Nevertheless, getting the public health department to take action has been difficult--I resorted to emailing the group's mailing list. Lots of people are now getting sick.
Had we been informed fully of the disease (as I am doing right now) and our vulnerablility/contagiousness by the school when cases first showed up there at the start of the school year, we would not have spread the disease at a convention--because we both would have been treated with antibiotics early.
Because I notified that list of people, several have gone on antibiotics early enough to prevent infecting the many people they interact with on a daily basis.
Prevention:
There are new adult/teen boosters coming available--they have been available for a while overseas and in Canada. No one knows if they're effective for a year or 10 years, but this year it's as safe a bet to get it as getting a flu shot--and probably more critical to those around you, as the flu ain't got nuttin' on this baby.
If you know or think you've been exposed, jumping to the right antibiotics early is NOT a bad idea. I hate antibiotics and don't use them unless I've tried everything else--but I'd still jump to it if I suspected pertussis exposure simply because of how prevalent it is right now. The earlier you get antibiotics, the more likely they are to be effective.
While breastfeeding is always a good idea to prevent babies from getting sick, it is not particularly efficient at protecting small babies from pertussis. Even those who have had the "wild" disease are not permanently immune, and transmission of immune factors to milk is not high for this disease because of how it gets established and which immune factors are most helpful in mitigating it.
The DTaP shot is safer than the old DPT shot (my daughter reacted horribly to the old shot). It is still not "100%"...and is definitely not the most effective of vaccines. But it does seem to mitigate the disease to some degree, even if it does not prevent it entirely.
Homeopathic therapy is reported very effective by some families. I did not find it so, but did not try many remedies. Vitamin C therapy is more likely to help, but the doses required early on to truly help the disease are so high that I did not feel safe taking them in pregnancy. Not pregnant, taking just enough vitamin C to "almost" give you the runs, and staying at that level for as long as you can stand it, can help. Vitamin C is supposed to be quite toxic to the bacteria in question--and falls under the category of "won't hurt (much) and could help" for most people.
Understanding how the disease works (and why antibiotics don't "fix" it)
When one is first exposed, the bacteria colonize the cilia and certain cells in the windpipe. They create few symptoms for anywhere from a couple days to a couple weeks. Then they feel like an upper respiratory infection. If treated before symptoms appear or just as they appear, the course of the disease may be mitigated. But as soon as symptoms appear, it means the bacteria have started producing toxins. Lots of toxins. Toxins that range in effect from damaging the cilia to destroying some of the lung tissue and creating very sticky mucus. Even after you kill off all bacteria, it takes weeks or months for the body to effectively deal with the toxins left behind. So antibiotics may stop you from getting "worse"...but will not fix you or shorten the process of getting rid of those toxins. They just stop you from growing more bacteria to produce even more toxins. By the time the severe coughing starts, most of the bacteria are gone, and by 2 weeks into the cough (which is the earliest most adults get a diagnosis), antibiotics will do nothing and you can't even culture the disease from phlegm because the bacteria just aren't around anymore.
This is a human-only disease--animals don't get it.
Resources and links:
A website with video and audio of "classic whooping".
Chocolate and coughing
Oregon DHS pertussis info I particularly recommend the two PDF articles on the lower left side of the page.
www.whoopingcough.net This site goes into a whole lot of detail about why most doctors miss the diagnosis and what the symptoms are in adults.