Sick Care

Five years, four months and two weeks ago, an ENT, whom I had gone to see for tinnitus, cut a large amount of bone out of my nose and face for no medical reason. This unnecessary surgery left me maimed, in pain, unable to breathe, and infected with acinetobacter, a deadly antibiotic-resistant infection. The surgeon, who examined my nasal cavity three times over the next six weeks, never cultured the infection or offered help. In screaming agony, I went to another ENT who prescribed Augmentin without culturing the infection. My mucous membranes had been ripped out in an obsolete surgery called a Caldwell-Luc. The infection lay over raw and bloody body tissues and exposed cut-open bones.

The new ENT, Dr. F., then wrote a letter to my GP describing my infection as “a small amount of purulent discharge,” and devoted the remainder of the letter to rationalizing the senseless butchery. My GP of five years sat with the letter in her lap, a look of disbelief on her face, and suggested I try another ENT. I stuck with Dr. F. It would have taken months to see another ENT. As it was, I couldn’t even see Dr. F. for five more weeks.

Before those five weeks had passed, the infection claimed my body. My lungs, throat, nasal cavity and sinuses filled with blood and pus. I could barely speak or breathe. I lay still in my bed for days, afraid to jar so much as a hair for fear I would slip away. Finally, I crawled to my phone and called my GP at home on a weekend. She called a prescription for 10 days of Augmentin into my pharmacy. This was five days before my next scheduled appointment with Dr. F.

When I saw Dr.F., he suctioned pus out of my nose for ten minutes. “Look at all this,” he marveled to his resident. A circus clown would have known, at this point, that the infection was antibiotic-resistant. Dr. F. ordered me to finish the Augmentin and then return in six days for a sinus culture. A wrong antibiotic will beat down an antibiotic-resistant infection. Unfortunately, a wrong antibiotic is worse than no antibiotic at all because the infection that remains will then mutate and become more antibiotic-resistant. He wanted to beat back the infection before he cultured it because of course he should have cultured it five weeks earlier. Instead, he had strengthened the infection in the course of attempting to minimize my condition and cover up a colleague’s malpractice.

The Augmentin didn’t do the job that Dr. F. had hoped it would. Six days later, I tested positive for acinetobacter. The infection was eventually cleared.

For the next five years, I struggled with antibiotic-resistant eye infections, tooth roots and a recurrent “sinus” infection on the right side of my face. The right side of my face has progressively collapsed. For three years, I have suspected that the “sinus” infection is an infection of the bone or osteomyelitis. I have been unable to get this infection diagnosed because Dr. F. has sabotaged my care, calling around to my caregivers and making sure I get no help. I must never get a diagnosis until I am so old and decrepit and so much time has passed that Dr. F. can claim there is no relationship between his malpractice and my osteomyelitis.

Allow me to describe an example of the kind of “care” I am receiving for this recurrent infection. The pain began again last August. I saw Dr. D., an ENT. Dr. D. ordered a two-week course of intranasal Bactrim, with 2 refills. I used all three, refilling the prescription each time the infection returned. Then I returned to see Dr. D. in January. I took my laptop computer and my 2-year-old bone scan which, unfortunately, was done at the end of a long course of antibiotic treatment, rendering the scan almost useless. Even so, the scan was not entirely normal. Dr. D. guffawed at my scan and said he didn’t know how to read it. I told him—as I had before—that I really believed the infection was in the bone. He dismissed that, saying that if I had a bone infection, I would be really sick—systemically sick. I told him that, in fact, I was really sick and had been for months. He ignored that and said he was prescribing another antibiotic. I had now had the infection for five months. He was able to see the infection with an endoscope. I said, “Aren’t you going to culture it?”

“Pshawww,” he said. “If I culture it, you’ll just get a bill for a lab test. Let’s do the antibiotic and then I’ll culture it next time.” That’s right. Let’s kill the infection and then culture it. Where have I heard this logic before? And its variation: Let’s kill the infection and then do a bone scan. In fact, I had been hoping for a new bone scan. After a powerful round of antibiotics, I would not be able to get a clear bone scan for another six months. So Dr. D. wrote a prescription for a two-week course of Clindamycin. I became horribly sick from the antibiotic—raging, diarrhea, pain and nausea. I didn’t return to see him because I was out of town visiting a friend.

I returned to his office five weeks later, still sick. “Oh my God,” he said. “You should have stopped taking it.” (I admit that I should have.) “We have to test you right away for C. Diff. I knew what he was talking about. Clostridium Difficile. A serious intestinal infection one gets from taking too much antibiotic. I had already researched it and I was pretty sure I had it. I had to ask him to culture the “sinus” infection which I believed would test negative after that antibiotic assault. In fact, he saw no infection. “Well, it must have killed something,” he chuckled. “It took out your GI tract.”

I got the C. Diff test done at an Urgent Care.  Two days later, Dr. D.’s office called early in the morning. M. was telling me that Dr. D. wanted to start me on Bactrim. I believed she had received a positive result on the C. Diff. test. “The infection is Clindamycin-resistant,” she said.

Bactrim is not a drug for C. Diff. “Oh, you’re not talking about the C. Diff,” I stammered. “You mean…?”

The “sinus” culture had tested positive. I asked her what the “sinus” infection was. Meanwhile, I was spinning with the knowledge that I probably also had C. Diff, which would certainly be made worse by Bactrim. “I don’t know,” she said.

“You don’t know? What does the lab report say?”

“I don’t interpret lab reports,” she said.

I lost my temper and yelled that I never should have been put on Clindamycin which had made me very sick, and here it turned out that the “sinus” infection was Clindamycin-resistant. “The infection should have been cultured before putting me on an antibiotic,” I fumed.

When I got off the phone, I called the Urgent Care. The C. Diff test was positive. M. called me back and said I could pick up the lab report at their office which is a 45-minute drive. On my way there, she called again to tell me my C. Diff test was positive. “Dr. D. wants to put you on Flagyl,” she said. “No thanks,” I responded.

The lab report was enlightening. The infection is a rare form of staphylococcus. I’ll bet that is the most antibiotic-resistant staph on the planet. Bone infections are usually staph. I also have a diphtheria-like infection. A good life-threatening case of C. Diff was just what the doctor ordered.

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~ by ens3 on March 9, 2013.

4 Responses to “Sick Care”

  1. I realize we are so many suffering from this horrible disease!! i am from Uganda and had tubinectomy in 2004. Since, then I have not had peace as I have suffered infections that do not go away including post nosal drip that has resulted into tonsil stones that small horrible. I have visited many ENT Drs, but they all seem to be one. None of them believe the symptoms we face after this surgery and even after hearing from us of what we go through, they do not research and instead go on to cripple other people! The antibiotics prescribed seem to work effectively for short periods. I have resorted to using saline water since then but unfortunately, the infection has become sturbbon and now have pass in ears.

    I believe these people are just after making money especially where the laws are weak and these doctors team up together to cover their dirty game.

    I know this disease will kill me one day for I have had no peace since the surgery but something need to be done to stop this.

    God bless you.

    VASTA FROM UGANDA

  2. I am so sorry, you are a very strong person! My grandmother is struggling with the same issue…I am not sure what antibiotics they are trying in her situation. This has been on-going for nine months, the infection has made it’s way into her spinal bone area along with the tissues and muscles in the surgical area. If you see this could you PLEASE give us some advice, we are very desperate as I have done hours of research and can not find any solutions or helpful tips to the situation. As of now she is going everyday for 6 weeks to take these antibiotics which are $1500 a session! That being said we have acquired a top rated lawyer to help with this case, not only for my grandmothers suffering but for the others that have to go to this hospital and be sent home helpless. ANY information is helpful at this time, and I would greatly appreciate it, as would she. Thank you!

  3. Wondering if you got rid of the C. Diff. ? Your story is so heroic and tragic at the same time. My heart bleeds for all you have had to endure.
    My partner is going through hell since his turbinate reduction surgery, where the doctor burnt the tissue to the bone. The major part of the the struggle is for doctors to actually believe there is something wrong…why would someone lie about this…why would thousands of people lie about ENS.

    • Jenny,

      I am so sorry that this happened to your partner. One hopeful thing is that my turbinates were also burned (cauterized) and the mucosa grew back over them large enough to create resistance in the airway. I am not normal, and must spray my nose with saline many times a day, but I no longer suffer the intense suffocation as before.

      No, I have not gotten rid of the C. Diff. It goes away for days at a time, and then brings me to my knees again for days at a time. My research suggests that people suffer with it for years. I have no faith whatsoever in mainstream doctors, now, as this last ENT has given me yet another chronic condition for which there is no rational explanation. All he had to do was culture the “sinus” infection that his prescriptions had failed to resolve for over six months. He would have known the infection was clindamycin-resistant–had he done this simple thing–and I would not have taken clindamycin and gotten C. Diff.

      I am treating it with kefir and oregano oil. As long as I take these things daily, the C. Diff stays away. Keifr, unlike yogurt, recolonizes the intestines. Oregano oil is a natural antibiotic which does not harm the body (as do harmful antibiotics). All mainstream doctors would have to do to prevent scourges like C. Diff is prescribe Kefir along with dangerous antibiotics, but God forbid, they acknowledge the healing power of natural substances that drug companies cannot cash in on. It is an unholy alliance and doctors can be run out of business for failing to honor it. Patients are an inconvenient footnote in the business of modern medicine.

      People (mostly doctors) lie about ENS because there is money to be made in doing these unnecessary and damaging surgeries. And all doctors cover for each other.

      I wish the best possible outcome to you and your partner.

      ens3

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