http://www.berkshireeagle.com/stories/jeffrey-l-diamond-my-tick-bite-nightmare-part-1,519151 Jeffrey L. Diamond: My tick bite nightmare: Part 1, September 12, 2017
RICHMOND — Anaplasmosis. What in God’s name is Anaplasmosis? Until I was stricken, I had never heard of this sometimes deadly tick-borne disease. Sure, everybody knows about Lyme disease, but few of us know anything about the other dozen or so tick-borne infections including Anaplasmosis.
Since 1999, the Center for Disease Control has tracked tens of thousands of cases fueling concern that it’s snowballing into a nationwide epidemic. Anaplasmosis is caused by a bacterium called Anaplasma phagocytophilum that’s carried by a blacklegged tick. The onset of symptoms usually takes a little over a week. Some people weather the infection without ever being diagnosed only suffering cold or flu-like symptoms. Others are diagnosed from a blood test and are placed on a regimen of doxycyline and never think twice about it.
But five percent of us suffer far more dangerous symptoms requiring hospitalization. And about one percent die from Anaplasmosis within a month. I was one of those five percent who landed in the hospital and probably would have died from the disease without the quick thinking of my primary care physician.
My nightmare began sometime in late May — though I have no memory of being bitten and never found the tick. I live on a mountain in Richmond surrounded by dense forest and thick underbrush. I love taking long walks through the woods and often spend hours on my back porch with a cup of coffee engrossed in a good book.
It was Saturday, June 3, when my first symptoms appeared. My wife, Amy, and I were at my granddaughter’s sixth birthday in Brooklyn, N.Y. I developed a mild headache and didn’t think much about it nor the fact that my breathing was labored. I suffer from chronic asthma, so I used my emergency inhaler to control the wheezing.
After the party, I drove home in a fog, my chest growing tighter, my breathing getting worse. After a late dinner I sat down in our library to watch a baseball game, but I couldn’t follow the action or understand the announcer.
Trip to the ER
So I made my way to our bedroom, the room spinning, the furniture appearing to move as I stripped off my clothes. I slept fitfully for a few hours before waking, my head pounding, my body shaking. I remember stumbling out of bed and walking directly into the wall.
Amy awoke and flipped on a lamp then asked me what was wrong. Blinded by the light, I told her I wasn’t feeling well then headed to the bathroom where I took two Motrin, splashed water on my face, and staggered back to bed.
I slept fitfully until 9 a.m., when I got up in a pool of sweat, my headache worse. I remember grabbing onto the furniture so I wouldn’t fall as I looked for a digital thermometer. That’s when I discovered I had a fever of a 101, so I took two more Motrin and slept another four hours, before Amy came into the bedroom and handed me a cup of coffee. Feeling weaker, I remember looking into her eyes and saying that I needed to go to the emergency room.
I don’t remember the 20-minute drive to Berkshire Medical Center, but I do remember needing Amy’s help to walk into the hospital. The next five hours were dreamlike as a parade of people examined me. A nurse drew blood and whisked it off to the lab. Another nurse took my blood pressure, checked my pulse and oxygen levels and my temperature which was just over 100. Then an ER doctor listened to my labored breathing through a stethoscope. I couldn’t focus on her questions, so Amy took over and explained my symptoms and that I suffered from asthma, the doctor ordering a chest x-ray to see if I had pneumonia and a nasal swab to check if I had the flu.
Hours passed as I lay on a gurney in a deathlike sleep wondering what was wrong, before the doctor told us there was no bacterial infection. But she said my blood test showed a low platelet count and an elevated D-Dimer, so she ordered a CAT SCAN to check for blood clots in my lungs. But the CAT SCAN, like the chest X-ray, was negative, and after five hours of waiting, we were told I probably had a virus that would run its course in a couple of days, and that she was sending me home without an antibiotic.
I was too sick to argue, but Amy protested that I needed to be hospitalized for more testing, that I was sicker than she’d ever seen me. But the doctor just repeated there was no reason to keep me overnight. Did she make a mistake? In my view, the answer is yes.
But even more confounding, I was never tested for a tick-borne disease even though my symptoms were classic and the problem is epidemic in the Berkshires. I asked a BMC spokesperson why this isn’t a standard test, but to date I’ve received no answer.
If my emergency room doctor had only acted on these basic warning signs, I might have avoided the medical crisis that was soon to follow.
http://www.berkshireeagle.com/stories/jeffrey-l-diamond-my-tick-bite-nightmare-part-2,519235 Jeffrey L. Diamond: My tick bite nightmare: Part 2, September 13, 2017
RICHMOND — My battle with the tick-borne disease, Anaplasmosis, is a warning for all of us here in the Berkshires. Unlike Lyme disease, Anaplasmosis often strikes with crippling speed, and if not treated quickly, can snowball out of control.
That’s what happened to me when I came down with the infection this spring. I pick up my story after being sent home undiagnosed from the emergency room at Berkshire Medical Center on June 4.
My condition continued to deteriorate the next day, the pounding in my head intensifying, my breathing more labored, my temperature soaring to 103. That’s when my wife, Amy, made an appointment with my primary care physician, Dr. Karen Prestwood.
As we left our home in Richmond on Tuesday, June 6, I could barely stand. I have vague memories of stumbling into the doctor’s office and of Dr. Prestwood sitting at the computer reviewing the test results from my visit to the emergency room two days before.
After noting the timeline of my symptoms, she told us I might be suffering from a tick-borne disease — the first time a doctor had raised that possibility. So she ordered a blood test to confirm her suspicion and placed me on doxycyline, a decision that probably saved my life.
The following day, June 7, was a nightmare. My mind, ravaged by the high fever, was delusional, spiraling from one hallucination to the next. Amy moved me down to the guest bedroom on the first floor worried I could no longer manage the steps. I spent most of the day sleeping, waking at 2 a.m. Thursday morning needing to use the bathroom. I remember climbing out of bed, the room spinning, then wobbling across the floor and into the bathroom. That’s when I fell for the first time, landing in the bathtub.
I remember calling Amy for help, but she was upstairs and couldn’t hear me. I began coughing uncontrollably, my lungs burning as I steadied myself against a wall, climbed out of the tub, and headed to the toilet. That’s when a
new dangerous symptom reared its ugly head. Even with my bladder about to burst, I could only pass a trickle of urine.
Later that day, June 8, my fever climbed to 103.5 and my lungs began filling with fluid. Amy placed a call to my pulmonologist at Brigham and Women’s Hospital, who asked me if I was strong enough to make the trip to Boston so he could examine me, but I was so incoherent, he stopped me mid-sentence and told me to head straight back to the emergency room.
New crisis point
So we made our second trip to Berkshire Medical Center, Dr. Prestwood calling ahead to tell them to expect me. I was processed immediately and taken to an exam room. A nurse hooked me up to an IV, took my vitals, then drew blood. I remember being in a daze and desperately needing to urinate. The nurse gave me a urinal, but all I passed was a stream of blood. I had reached a new crisis point. My renal system was hemorrhaging.
I remember Amy racing out of the room for help and returning a few minutes later with the doctor. He immediately ordered a catheter to empty my bladder and said I was going into kidney failure — though he still had no idea why I was sick. He decided to continue the doxycyline treatments ordered by Dr. Prestwood for a possible tick bite infection as he awaited the results of her blood test — still not back from the lab after three days — and admitted me to the hospital for observation.
It wasn’t until the next morning, Friday, June 9, almost a week after I first got sick, that the attending doctor in the hospital confirmed what Dr. Prestwood had suspected, that I was suffering from Anaplasmosis. Finally, I knew what was wrong with me.
I spent the next four days in the hospital, my body slowly healing. By late Saturday, June 10, I was breathing better, my kidneys were improving, there was no blood in my urine, and my fever and headache were gone. Then on Monday, June 12, the catheter was removed and my bladder began working on its own. The doxycyline had done its job. Later that day, I was discharged to the Kimball Farms Nursing Care Center where I spent three days building upper body strength and learning to walk again.
Now almost three months after coming down with Anaplasmosis, I’m still suffering lingering side effects. I’m always exhausted, have double vision from a condition called optic neuritis, and face months before I fully recover.
So my experience with this tick bite nightmare is a warning for all of us. Many in the medical community are ill-equipped to deal with the problem, and if my wife hadn’t insisted I see my primary care physician after I was turned away from the emergency room on that first day I was sick, I might have died from the infection.
So the lesson here is simple. We all need to understand the dangers. In the end, it could save your life.
An author, award-winning producer, and director, Jeffrey L. Diamond has 40 years of experience in television news.
A harrowing story for sure. Please spread the word about all things TBI (tick borne illness). Mainstream medicine is ill equipped for sure, not recognizing and understanding that a tick’s gut can contain numerous pathogens which complicate our cases exponentially. https://madisonarealymesupportgroup.com/2017/07/01/one-tick-bite-could-put-you-at-risk-for-at-least-6-different-diseases/ (There are many more than 6)
The CDC/IDSA mono therapy of 21 days of doxy only works for acute cases, and sometimes not even then.
Besides numerous pathogens adding to the complexity, the CDC STILL does not recognize Bb (Borrelia burgdorferi – the causative agent of LD) is pleomorphic and shape shifts, requiring various antibiotics to kill each form as well as the role of biofilms, a colony-like form protecting the pathogens, that few antibiotics can penetrate.
More on Anaplasma Treatment: https://madisonarealymesupportgroup.com/2016/03/08/anaplasmosis/
For more on Lyme treatment: https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/