A Cautionary Tale

Some posts back, I wrote about wondering what is really going on behind the scenes of our blogging community.  I mentioned that no one wants to hear about bone spurs or anxiety disorders, but is it really all flowers and beautiful tableaux?

The farm where we live is in a hilly, forested area.  There are ticks.  Never saw anything like it.  I myself have had eight so far this year.

I digress.  My husband has been sick and symptomatic for four years.  He has these 'spells'; that is what he calls them (though I've learned they are called flares.)  He'll be fine one minute and the next he spikes a fever, become so cold he covers up in blankets on 100 degree days, will have chills and be just literally in bed, weak as a puppy.  They would disappear just as fast as they'd come.  He would go to the doctor, a general practice MD, who would put him on Amoxicillan and send him off.  He'd get better for a while, but the spells never went away.  

One thing that has compounded the problem, is that in 2001, he had surgery, chemo and radiation treatments at MD Anderson hospital in Houston for a stage four throat cancer.  He made it, but from the radiation treatments, his throat opening now is the size of an ink pen making swallowing a daily trial.  He has his throat stretched occasionally, but mainly the benefits now are to keep it from closing up further.

In the US, you have your main doctor, then see specialists for other things.  None really know what the other is doing.  They simply don't have the time, which, is why I think his primary doctor never figured out what was going on.  You really do have to be your own medical overseer/researcher.

My husband has gotten sicker and sicker, is down to 105 lbs. and finally has hit rock bottom, literally unable to work some days.  Did I mention he is a terrible patient and hard headed?

I was reading a book about a woman with malaria and told my husband that their symptoms were very similar.  I did some research and there were actually 20,000 cases in the US last year and that number is growing.  Then, I started researching tickborne illnesses.  I couldn't believe it; there are so many different kinds and the list grows daily.  I finally convinced my husband to request a tick panel test from his doctor.  The results came back positive for Rocky Mountain Spotted Fever and Ehrlichiosis both of which can be fatal if left untreated.  Doxycycline was prescribed and it made him horribly ill.  Bedridden and with high fever.  He couldn't even get in to see his primary physician to see if he was having a drug reaction, so he won't be seeing that doctor again.

Meanwhile, to get in to see an infectious disease specialist, you have to be referred by another doctor.  We got him in within days through another friend of his.  The new ID doctor has been a blessing.  Very competent and thorough.  After all new testing and urging my husband to get a feeding tube as it is so important in fighting ID, he said the tests would take about 2-3 weeks for results.  

Imagine our surprise when he called my husband the next day and said he had gotten some results back.  His C Reactive protein was at 17 (normal is around 1.) and more importantly, he got a test back for Bartonella henselae.  He said it was off the charts; he'd never seen a higher number in his 30 years of practice.  He wanted him to start that night on azithromycin.   He doesn't think he has RMSF for it probably would have killed him left untreated for this long, but we'll see whatever other co-infections there are.  He saw a gastroenterologist yesterday, but the earliest he could schedule a feeding tube was November.  

By the way, Bartonella henselae is a proteobacterium that is commonly called Cat Scratch Fever.  Research is sketchy and it could also be transmitted by ticks.  One thing I've learned from all of this is that diagnosis of many infectious diseases is in its infancy; after many diseases like malaria et al were eradicated in the states by new drugs in the 1950's, research fell off, monies dried up and very few went in to the practice of infectious diseases.  The Walking Dead is closer than we think.

We are finally hopeful now to know some of what is going on with my husband's health.  Some nights when he drags himself off to bed, I wonder if he will be alive in the morning, so severe are his symptoms.  I've even watched the rise and fall of his chest to see if he is breathing at night.  

The cautionary tale here is do your own research.  If you have strange symptoms that can't be diagnosed, request tests or a referral to an infectious disease specialist.  You wouldn't believe what all is lurking out there.

PS ~ we've been married for 43 years and don't know what I'd do without him.