"Gather ye rose-buds while ye may." Robert Herrick

"Gather ye rose-buds while ye may." Robert Herrick

Hello Friends!

Friends, Romans, countrymen...y'all. Foodies, gardeners, artists and collectors - let's gather together to share and possibly learn a thing or two in the mix.

Donna Baker

Wednesday, August 19, 2015

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.

27 comments:

  1. Ooh dear Donna, what an incredible story, I can relate to your concerns, having a husband who seems to be fine one minute and down for days the next. My husband was initially diagnosed with possible Lyme Disease four years ago, other than many tests later he was diagnosed with CLL. Last week was not a good week, out of the blue, four days spent in bed, no energy, a repeat of symptoms in the past. We have changed to a new doctor, and feel he is in better hands than the last....at least he follows up, and communicates with the specialists.
    Healing wishes sent your way.
    ~Jo

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    1. Yes Jo, I read that TN has the highest number of RMSF cases in the US. They are checking for fungal and soil borne diseases as well as histoplasmosis. There is a whole universe of microbiological things we can't see out there. Hope your hubby can get the right tests. I did find out that even the tests aren't always right and many ID's are very hard even to diagnose.

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  2. I have been my own health protagonist for years, when my PC blew me off about gaining forty pounds in three months.I have done research for people I care about. It is good to know your husband was able to quickly hook up with an infectious disease specialist. Another problem in this country is what I refer to as "old lady medicine." I see that it simply is "old folks medicine." A pat on the head, send them home.
    My father, who died many years ago, succumbed to the consequences of histoplasmosis. Sometime in the fifties he tore down the chicken coop in our back yard. In the sixties he spent years with "walking pneumonia," sicker and sicker, until our family doctor sent to the medical school in Columbus, Ohio, for observation and and then diagnosis of histo.The cure was brutal, like chemo. He still lost 2/3 of his lungs to surgeries to remove or collapse the fistulas caused by the fungus. That was so long ago; I suppose the cure is better these days; I don't know. But description of your husband's treatment makes me wonder.

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    1. They are testing for histoplasmosis and other things. And, yes, though I have bought two expensive respirators before, my husband has cleaned out the chicken house without the respirators. Hence, my comment that he is hard headed and childlike, still believes things won't happen. Another part of the cautionary tale.

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  3. Oh, Donna. I hope that it is identified and sorted very quickly, and my heart is with you.

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  4. I had not heard of a new post so just came to see in case I had missed one..most probably this post will come to me later...It took a long time for you to get to my inbox..

    and some never get to me(other blogs I follow)..it's a conundrum.
    But this post..

    is of infinite importance..
    you are right in saying our blogs are mostly rose colored..
    I chose to keep mine that way for personal reasons..but rest assured.. it's just a choice..


    I agree with you that many if not most. doctors never communicate w/ others..I think that in many cases it is sheer determination on a patient's part..in the idea that he knows something is off..and his perserverance in wanting to find out what..that may get the patient somewhere or not..
    I can attest to terrible false diagnosis/es....
    and to no plausible diagnosis/es..

    from being 100% perfectly healthy to one error on a physicians part changing someones life 100%.
    I feel so bad for you and your husband..and I hope this new doctor brings an answer.. a solution..a help..a cute even.
    He is very lucky to have you..
    I am a crusader..and would continue to the end of the world if a loved one was not finding an answer.
    You are marvelous.
    Poor dear husband.

    Fingers crossed..and God Bless you both.


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    1. Thank you so Monique. We are very hopeful with the new doctor. Just wish I had figured out this thing earlier as he has suffered so with this. He is hopeful and positive and if I can keep him down long enough to mend (nothing much has gotten done this summer on the farm) I think he's going to get better. I heard him telling a friend of his he has to get better for hunting season this fall. I guess if that is the impetus to get better, so be it. It really is his favorite thing in the world.

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    2. My dad was a hunter:) And one of our son-in-laws loves it too..
      Could not stop thinking about you last night..Can't wait to hear great news from you two.
      This isn't a rehearsal as they say..so lets get cracking and get better.

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  5. Donna, I know how scared you are. It is beyond difficult to watch your mate get sicker and sicker and no one knows what is wrong. I am so glad you have found an ID doctor that is identifying potential causes of your husband's illness. You, and he, will be in my thoughts daily.

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    1. Cindy, thank you and you are in my thoughts too. You haven't posted in some time and I hope there is some healing going on with you.

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  6. What a frightening time of it your husband and you have had, Donna. When I was a child long, long ago, my Mom passed along to me a tick phobia. Back then, I don't think we had any idea of all the diseases they could carry.

    You are absolutely correct about our having to be part of our medical teams. Even living in a big city with all sorts of hospitals, medical schools and doctors, there can still be missed symptoms. Yes indeed, life is not all sugar coated.

    Your husband is fortunate to be married to you for all these years. May you all have many more together. xo

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    1. Thank you Frances. Yes, I would think one would receive the best medical care in the nation in NYC. Ticks are gross. I had never seen one before I moved here. And, there are every size and shape and kind of ticks here. Just disgusting, but can be much more than just parasites. I was shocked to read about how they are vectors for so many different diseases around the world. They pass around germs from deer, rabbits, mice and rats, etc. Not to mention mosquitos which cause many deadly diseases. I wish I had gone into microbiology and am going to give a microscope to my grand daughter for her birthday. She loves science.

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  7. Oh Donna,
    What a terrible time your husband and you have been going through and terrible that he has been mis-diagnosed.
    I really hope that they are on the right track now and your husband will improve and gradually get back to his old self again. As much as it's so horrible for your husband, it is a massive strain on you too.
    Thinking of you both and sending love from the UK. XXXX

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    1. Thank you Jacqueline, so much. It really does mean a lot.

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  8. Donna, this is a really scary story. I do hope that now your husband begins the slow road to recovery.

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    1. We are very hopeful now and thank you. Farmers have to be very careful on the farm. Didn't know there were so many unseen dangers.

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  9. Donna, my thoughts are with your dear husband that he may regain his health. It's so hard to see a loved one suffer, and even worse when the medical giants get it all wrong. Even here, in a country which has the best doctors, medical facilities and levels of care for the most part, things can get completely screwed up. Infectious diseases can be so devastating - there was a terribly sad news story just last week of the mother with RMSP who has become a quadruple amputee, it made me cry. I'm deathly afraid of mosquitoes, ticks etc. which carry so many dreaded diseases!

    Blessings to your husband, and you take good care of you.
    Fondly, Mary

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  10. Mary, thank you so for stopping by and sweet sentiments. Yes, the lady is in OK too. During research, I found that most of the latest research on tickborne diseases is in Norway. It seems the Netherlands has ticks too. I never knew. My husband is still very weak and on his third course of antibiotics, but says he feels better every day. We are very hopeful.

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  11. Dear Donna-so sorry about your hubby. What a horrible thing. It seems like our medical system is not working at all these days. So glad you at least located a doctor who is caring and knowledgeable. Will certainly be praying for him and you as well. Please keep me posted.

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  12. This sounds like a horror story Donna - I bet you have both been worried to death wondering what was wrong. Let's hope that it will all get sorted properly and your husband returns to good health. My thoughts are with you both.

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    1. Elaine, we are very hopeful now we know what the problem is. Thank you.

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  13. Dear Donna, So sorry to read about your dreadful tale. I hope the new medication and doctor will improve your husband's health. Thank goodness you managed to carry out all that research to try and discover the cause. We have ticks here which can cause Lyme disease. Sarah x

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  14. Thank you much. I was so shocked to see how many countries had tick diseases and Norway and the Netherlands seem to be in the forefront of research.

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  15. This is late, Donna, but I just saw Monique's response to you over at her blog, about your being so busy, and I wondered what this Donna-lady was so busy doing. I've read a few of your posts now so have some idea. My best wishes to you and your husband. My mom was diagnosed with Lyme in 2011, and as it wasn't diagnosed quickly or properly--she never developed the bulls-eye mark "they" say "everyone" develops after a tick bite--she now has chronic Lyme, daily tremors and weakness, etc. the rest of her life. She was 90 pounds at most by the time they diagnosed her. Anyway, you and your husband will be in my thoughts. I know the illness--and worrying about the person with the illness--is exhausting enough, and then to have be your own health care expert on top of it, makes it so much more draining. (And you've been moving on top of that! Ay!) Best wishes to you both.

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    1. Thank you so Val. You are right about the infectious diseases out there. They are very debilitating if not caught early and current medical practitioners know very little about them and their treatment. Again, the patient has to insist on testing and do the research themselves.

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