Board Certified and Brain Dead

So I went to the Adult Medicine Clinic at Upstate Medical Center, or whatever it’s being called this year. Periodically Upstate tweaks its name—and all its letterhead and signage, which costs about a million dollars—but who really cares and what difference does it make? It was Upstate Medical Center when it opened a bunch of years ago and that’s what it will stay until the locals die off. Occasionally the hospital administrators get the idea that changing the name will change how people perceive it. Bullshit. Save the money and stop changing the name, unless you’re going to change it to the Solid Snowball Center.

So I went to the Adult Medicine Clinic as a new patient and probably was seen by a clerk, a nurse, and a resident before the attending came in. The attending—and according to him, the boss of the joint—is Dr. Peter J. Cronkright. I will not make any snotty, lewd or disparaging comments about his last name. My personal policy is that I will give you a hard time about anything you have chosen, e.g., to become a physician, wear bowties or play the tuba, but I will not give you a hard time about anything you were born with, e.g., skin color, spinal bifida, or last name. There are limits and boundaries that I honor.

So everything was going smashingly well until Cronkright told me to sign the Upstate University Hospital Authorization for Release of Health Information Pursuant to HIPAA. I declined the pleasure. In the first place, neither the nurse nor the doctor told me to whom it would be sent. In the second place, there are all kinds of lies about my psychiatric diagnoses floating around in the ether. Let me tell you a couple of stories.

A woman went to the Emergency Room saying her leg hurt so bad that she couldn’t walk on it. The ER did its shtick—including but not limited to x-raying her leg—and then said there was nothing wrong with her. The woman had a major psychiatric history so the ER called a psychiatric consult. The on-call psychiatrist knew the patient, and knew that she was a major pain in the butt, but he was cool with that. If you are a good psychiatrist then pain-in-the-butt patients are routine and you develop skills in dealing with them. If you are Roger Levine, you just out-shout them.

So the psychiatrist does a comprehensive psych exam and concludes that there is nothing psychiatrically wrong with the woman, however, she’s got this leg thing going on, so he says, look, what I can do is admit you to psychiatry and then order a serious work-up on this leg problem. So she accepts, gets admitted, and the psychiatrist orders a consult. The medical consult says there’s nothing wrong with the patient, so the psychiatrist orders an orthopedic consult. The orthopedic consult orders an MRI and then says there’s nothing wrong with the patient.

So the psychiatrist goes back to the patient and says, look, I’m really sorry but I am also in a bind. I got no diagnostic code under which I can bill to keep you in this bed. I gotta send you home. The patient is pretty upset about this because her leg still hurts so bad that she can’t stand on it, but home she goes. Then she attempts suicide, which gets her another bed back in the hospital on inpatient psychiatry.

The psychiatrist is now standing in the nurses’ station rubbing his face and wondering aloud what the heck he should do next. A nurse says, why not order another x-ray? It’s cheap and you’ve got nothing to lose. So the psychiatrist orders another x-ray.

The patient has a broken leg.

If the patient has a psychiatric history then it causes such blindness in physicians that it takes three of them to see a broken leg.

Here’s another story: the patient started having somatic complaints, which means she said there was something wrong with her body. She repeatedly went to her primary care physician; whether she was referred to any specialists is unclear. Finally her PCP tells her that she’s having side effects from her psychiatric medicines. Well, she hasn’t got any really serious crazy diagnoses, so her psychiatrist takes her off all her psych meds.

Shortly thereafter, she ends up in the ER. The brilliant staff find her to be anemic and want to admit her, but she’s not exactly thrilled with the whole medical profession so she says she’ll just take her medicine and go home. One week later she’s back in the ER. Some bright resident decides to order a CT scan.

The patient has bone cancer from head to toe and dies a few weeks later.

The typical physician’s brain goes into complete shutdown when s/he learns a patient has a psychiatric history.

When I broke my leg and went to the ER requesting the fast-track, they put me in the rubber room, that is, the psychiatric observation room. It is a completely bare room that contains one stretcher and one chair. No television, sink, EKG monitor or oxygen—nothing. In one wall there is an observation window covered by a venetian blind. You go into an ER and even before you get out of the waiting room, they’ve called up your chart and know that you have a psychiatric history. They didn’t move me out of the rubber room until x-rays confirm multiple fractures of my left leg.

Physicians have sacrificed their own emotional maturation in order to get through medical school and residency. They have so deeply buried all their own feelings that they cannot cope with anybody else’s feelings—ask their wives. They freeze to insensate blocks of ice when confronted by any patient with a psychiatric history. They become unable to function as physicians. Knowledge of a patient’s psychiatric history precipitates total cognitive failure in the attending physician.

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Fatty Carbuncle

Have you ever heard of Fatty Arbuckle? He was a comedian and silent screen star whose professional career began in 1906. It nearly ended in 1916 when, at a weight of 386 pounds, he got a carbuncle on his leg, which almost required amputation of the leg. Later, Arbuckle was tried three times for the rape and murder of one actress. (To read this extraordinary story, go to

Fatty Arbuckle has nothing to do with this story but his name came to mind and his story turned out to be interesting, and of what use am I to you if I don’t bring interesting stuff to read?

Here’s my story: About ten days ago I began to have sharp skin pains on my chest. I assumed the pain was caused by my bra rubbing on a skin tag but when I looked—or tried to look, it being in a highly invisible place—then I could at least see that it wasn’t a skin tag.

Seven days ago, I asked a friend to look at it and she thought it was impetigo, which is a bacterial infection that causes a sort of blister on the skin. What I had was a spot about the size of a nickel that was red, oozing, and had a peculiar hole in the middle. Yes, a perfectly round little hole, unlike anything I’d ever seen, as perfect as if a miniscule apple-corer had removed a bit of tissue. Usually impetigo is only found in children; my friend, her brother and her daughter had it as children, and it is highly infectious. I am, most emphatically, not a child. Treatment with an antibiotic enables healing in two or three weeks. Knowing my intolerance of antibiotics taken internally, my friend spoke of a topical antibiotic cream, and then anointed the area with a bit of oil of thyme and oil of oregano. Thereafter, as I wheeled out in the community, I was followed by a bunch Syracuse University students who thought I was a pizza.

Six days ago, I had a Reiki treatment, which basically is the Reiki provider calling on the universe for healing—or, as she and I understand it—channeling God to bring recovery. During the course of the treatment, I experienced a brief sharp pain near the bad spot. (I think of this thing as if I am a fruit with a bad spot, a small place of not-good-fruity.)

Five days ago, I had an appointment with a doctor, during which I showed him the offending area. He pronounced it to be a carbuncle, which is a red, irritated lump, usually around a hair follicle. Mine wasn’t. He prescribed an antibiotic pill. When I asked if there was a topical antibiotic, he said flatly, “No.”

Four days ago, I got the prescription filled for doxycycline hyclate 100 mg. It is a tetracycline, and prescribed to be taken every 12 hours for 12 days. I had no intention of taking it that way, and I’m through having arguments with physicians and trying to explain about my intolerance. I intended to take it every 24 hours for six days.

The paperwork that came from the pharmacy said that doxycycline—
• Can cause an upset stomach.
• Do not lie down after you take it.
• Don’t eat or take other drugs with it.
• Keep taking it even after you are all better.
• May cause diarrhea, vomiting, sunburn, difficulty in swallowing, change in amount of urine, intracranial pressure.
• Get help right away if you have sudden blindness.
• May cause a severe intestinal condition months after you stop taking it.
• Can cause bloody stool, thrush, vaginal yeast infection, rash, itchiness, dizziness, trouble breathing.
• Could cause pregnancy.
• This is not a complete list of possible side effects.

And you expect me to ingest this shit? ARE YOU OUT OF YOUR FUCKING MIND?

Do people who have been taking drugs—medications—for years develop an intolerance to reading about side effects? Do they become immune to fear? Does cognition cease to respond to facts? How can anybody in their right mind read this stuff and still swallow the pill?

Well, I did. Three days ago, I took the first pill. Three hours later, my face got very hot, except when I touched my face, it was cool. The heat was not in my skin; it was inside my skull. Excuse me, but what does intracranial pressure feel like? Well, that went away, but that night I woke up, as I always do, and checked the catheter bag. It was virtually empty, which was shocking. Ah, this would be the doxycycline causing a change in the amount of urine. Where does the urine go? Are my kidneys not producing it? Is fluid backing up in the tissues? Will I have swollen ankles? Or is urine being produced but backing up in the bladder? I’ve got stage 3 chronic kidney disease—should I be worrying?

Two days ago, I had bloody stool. Well, sometimes that happens. Maybe it isn’t connected to the doxycycline. Maybe. So I take the second pill. And then can’t get out of bed. I cancel the trips to church and the shopping mall and tell myself that this is not a big deal. I’ve been pushing it pretty hard and I just need a day off, so I spend the day reading, watching television and sleeping.

When I got up one day ago, everything swooped to my feet. I felt as if I was trying to drag myself along while wearing lead boots. I got light-headed and my ears started ringing every time I stood up. . .

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Flying into Healing

V has to be returned to his mother today. That’s a 10-hour roundtrip for his father to drive so his father’s friend said, “Not a problem. I’ll fly you—four hours tops.” And so V—six years old, twinkly blue eyes, blond hair, dimples—will get his first view of Earth from low altitude.

I studied for my pilot’s license and never flew off the Earth without learning a life-lesson before I returned. One day the lesson was that, from altitude, cows and tombstones are undifferentiated. Another day it was simply that it’s okay to be tired and need to return to Earth. I was young and had to learn that.

V will be flying out of an FBO (fixed base operator) that has a poster that is a photograph taken at medium altitude from a light plane looking down on a small city surrounded by green countryside. The caption is “It’s an ant-eat-ant world out there.” From that point of view, people are not big, complicated and problematic, and the world is green, rolling endlessly into more green. It’s the God’s-eye view: it is man who makes boundaries and fights over them. God made one whole world, indivisible.

In 2001, I called my psychologist and psychiatrist to have breakfast with me on inpatient psychiatry. I told them that I was taking doctors prescribing drugs out of the middle of my life. Henceforth, my health care decisions would be made directly between me and God. If He wanted me to get better then He would show me the way. If He wanted me to dead then I was ready to meet Him on His terms.

In the past thirteen years, God has led me on an extraordinary journey of healing and suffering, truth and justice, good writing and growing in love.

The suffering has been withdrawing from drugs, living with the permanent physical damage caused by antidepressants, and the horrors of the American medical industry, which refuses to admit their drugs do damage or to learn anything about how to heal the damage. When confronted by the unknown, the American medical industry closes its eyes, makes moral judgments instead of medical observations, and acts with meanness: it is the patient’s fault because the patient is a bad person. And no matter if their treatment does no good or actually causes damage, they get paid.

The healing has been entirely in the hands of caring people who believe that the body will heal itself if the treating professional just removes the blockages. They really care about the patient and frequently engage in pleasant conversations about God, medicine and Syracuse University basketball while they are applying healing techniques: Yoga, Swedish massage, Reiki, psychotherapy, physical therapy, lymph massage, LED light therapy, homeopathy, craniosacral therapy, chiropractic adjustment and acupuncture. Medicare and Medicaid will not pay for alternative therapies but the health care providers, when they find out that you are really poor, will treat you for free or a substantially reduced cost. Their primary commitment is to your health, not to their wealth.

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You Tell Me

I am absolutely totally wrecked and don’t know where to turn. I am going around in circles with no way out and don’t know what to do.

I am in enormous pain. First, it was the carbuncle, apparently the result of the hyperglycemia, and the doctor at the Syracuse Community Health Center prescribed doxycycline, 100 mg twice a day for 12 days. I took 100 mg once a day for three days and was so trashed that I couldn’t get out of bed.

Second, the temperature went from 40 degrees to 80 in just a couple days. Most people with immune dysfunction (e.g. lupus, multiple sclerosis) will tell you that that’s just hell for them—we simply cannot adapt to such an enormous change in such a short time. I got worse. CFIDS is a disease that exists inside each cell. Do you know how many cells there are in the human body? Somewhere between 15 and 174 trillion. And every single one of them hurt.

Third, yesterday I got a permanent wave. The chemical stuff she put on my head was so excruciatingly cold that I was in torment. Then the chemicals stayed on my scalp for twenty minutes. How much of an extraordinary stressor do you think that was? If I can’t take four antibiotic pills, what do you think chemicals poured on my scalp did?

By yesterday, all I could do was lie in bed and cry. I’ve got a headache. My shoulder hurts. When I stand up then everything just swooshes down and it feels like my feet are in lead boots and my head gets light and my ears start ringing. I only can stand up for about five minutes before I start gasping for breath. My vision is blurry, and I can’t think straight. I’m easily agitated.

My twice-weekly acupuncture has been reduced to once a week. The doctor has to do three five-hour days of classwork at St. Joe’s—something about computers. Then he has to do the same thing at Upstate. Thirty hours. That’s 120 sick people who don’t get seen in a two-week period, including me.

The homeopathic provider has simply disappeared. About a month and a half ago he told me to keep him updated by email on how I’m doing. He simply stopped responding. I haven’t heard from him. An intermediary called him a couple times and he said he’d call me. He hasn’t.

I’ve got no money left to pay the physical therapist who’s doing the craniosacral thing, so he’s cut his charge almost in half—and cut my appointments from twice a week to twice a month.

I’ve had to stop the Swedish massage because there’s no money.

All I’ve got is Diana, doing a little Swedish, a little lymph, a little craniosacral, Steve doing LCD and chiropractic, and Kate doing psychotherapy.

No physician will listen to me or work with me.

I can’t get a primary care in Adult Medicine at Upstate because I won’t release my records. I won’t release my records because they carry all this psychiatric crap that is untrue, outdated, or just plain wrong. I’d be crazy to let that into a physician’s hands because they immediately dismiss everything said by a “psychiatric patient.” I could tell you stories.

I was told Dr. Perl was an immunologist but now I’m told he’s not. He referred me to neuroimmunologist Dr. Jubelt. Perl’s Fellow said I’d have to wait six months. Perl did the referral for fibromyalgia and CFS; the secretary wouldn’t give me an appointment because Jubelt only accepts M.S. and post-polio. Perl now refuses to say why he insisted on Jubelt, and will not refer me to the other neuroimmunologist.

Perl has referred me to Dr. Allam, a rheumatologist who claims to know something about CFS. I’ve been trying to get an appointment with her since last November. They say I might get an appointment next September.

At Joslin, I was assigned to a Fellow who doesn’t pay attention, can’t think and—with an A1c of 15—referred me to the educator for hypoglycemia. I had found two articles on-line about CFIDS + glucose, published in 2012, but they were so medically technical that I couldn’t understand them. I begged the Fellow and the attending physician to review the literature and was assured they would. As a new patient with a glucose of 570, I was not scheduled to see the doctor again for two months. I think that is inexcusable.

When I next saw the Fellow, she handed me two articles that she had printed off that morning. One was two pages long, from a women’s publication, and undated. The other was published in 2002. She had searched on chronic fatigue, not CFIDS + glucose. And she admitted that she hadn’t read the articles. She made no attempt to learn anything about my condition. Neither did the attending. When the Fellow called in the attending at the second appointment, it was not the same person as at the first appointment. He wanted to start over from scratch. And his English was so poor that I could not understand half of what he said.

Adult Medicine, Rheumatology and the Joslin Clinic wouldn’t work with me, so I called the Medical Director’s office to file a complaint. They forwarded my call to Patient Relations. I spent an extraordinarily long time on the phone with a young man, spelling out the details of my problems with Upstate.

Then I got a call from the nurse manager in rheumatology, wanting me to start from the beginning and repeat everything. I was with someone and couldn’t. She called the next day while I was out at a health care appointment, saying she only would try to call me one more time. She did not call. I tried to make a courtesy call to her, explaining that I was too sick to go through it all again. The phone number she had given me was not hers, but the main number for the entire building. I was transferred twice, kept on hold for five minutes, then they refused to let my call through unless I went through the whole name-DOB-etcetera business, even though I was returning the nurse manager’s call.

You tell me: What am I supposed to do next? Traditional medicine won’t help me, I can’t afford alternative treatments, and I am suffering.

What am I supposed to do?

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If I Can Find It, Why Can’t You?

Maureen Miller, Administrator
Joslin Diabetes Center
3229 East Genesee Street
Syracuse, NY 13214

Dear Ms Miller,

I am writing to file a specific complaint against Tulsi Sharma and a general complaint about the Joselin process.

Who is Tulsi Sharma? I have seen her twice at Joslin however I now find that she is not listed on your web site either as a physician or as staff. She was identified to me as a fellow. MyChart identifies her as an M.D. Other Upstate sites report her to have an MBBS, which may or may not be an equivalent of a doctorate in medicine, all depending on the country and university of origin. Substituting an M.D. for an MBBS is fraudulent.

Ms Sharma’s on-line Upstate profile says she has been at Upstate for five years. Doing what? I have never heard of a five-year fellowship. There is no other information provided about Ms Sharma—no country of origin, medical school attended, internship or residency served, research participated in or anything else. Based on her relationship with me, she could be just a secretary who’s paid attention.

Ms Sharma has elected to address me by my first name. In fact, I am two generations older than her and deserving of respect, which she does not offer. I am offended.

There are multiple minor examples of her not paying attention and not thinking, e.g., looking at my chart and asking who is Patrick Smith when it clearly states that he is a DDS, and posting “palpitations” to my chart when I never, ever, complained of them. All this adds up to me having no respect or trust in her ability to make reasonable and accurate observations about my status.

At my first appointment I presented with a glucose of 570; my follow-up appointment was not scheduled for two months. I think that is grossly poor doctoring. When I inquired about that, I was told that seeing the educator in the interim would compensate for no doctor’s appointment.

I have a dozen chronic illnesses including myalgic encephalomyelitis, diabetes mellitus, diabetes insipidus, chronic kidney disease and sleep apnea. I have an indwelling catheter, travel by power wheelchair and am unable to work outside the home. I am really sick.

At the appointment with educator Kate Obrien, we discovered that Ms Sharma had referred me for hypoglycemia. My average glucose is around 450, I am taking no medications and I was referred by Sharma for hypoglycemia? As sick as I am, Sharma dragged me out of bed for this? Ms Obrien was puzzled; I was infuriated.

At my first appointment with Sharma, Dr. Kelly came in as the attending. I explained to them that my most serious problem is myalgic encephalomyelitis (ME), known locally as chronic fatigue immune deficiency syndrome (CFIDS) or simply chronic fatigue syndrome. I had researched on the Internet and found two reports of medical research published in 2012 that had been done on the subject of CFIDS and glucose. I passionately asked Dr. Kelly and Sharma to do the same research and tell me what it said. I do not speak medicalese; I needed the doctors to educate themselves on my rare condition and how it impacted my devastatingly high glucose.

ME/CFIDS is a neuroimmune disease (see attached). I have been unable to get any appointment with a neurologist. At the educator’s appointment, Ms Obrien went to talk to Dr. Kelly and came back to report that Dr. Kelly would do a referral to a neurologist, and that she did not have time that day to talk to me about ME/CFIDS.

There has been no follow-up on the neurological referral that was supposed to have been done.

My next appointment at Joslin was March 26 at 2:00 p.m. for thirty minutes. I showed up on time; Sharma was ten minutes late, therefore blowing one-third of our scheduled appointment. She handed me two articles on chronic fatigue syndrome as if she was doing me a favor. Her attitude was that the patient wanted this information. Fact: I wanted a doctor to look at the literature.

One article was an undated two-pager from “Special Concerns for Women”; the other was dated 2002. Do you have any idea how much research has been done and how much has been learned in the twelve years since this article was written? When I asked Sharma what the article said about CFIDS and glucose, she didn’t know. She admitted that she hadn’t read it.

Here are the facts: Sharma was asked to do a literature search of CFIDS + glucose two months ago. She did nothing until the day of my appointment, then she only searched on CFIDS, not glucose, and did not read what she printed.

I cannot begin to describe the extent of my anger. I need a doctor, not a secretary.

In the two months that Sharma did not research my illness, I did. What I found was—
• Dr. David Bell, who was on staff at SUNY Buffalo, did primary research with Dr. David Streeten at SUNY Upstate, and was appointed by the U.S. HHS secretary to chair the CFIDS advisory committee.
• The International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, which published the “ME/CFS Primer for Clinical Practitioners” in 2012.
• Dr. Sarah Myhill’s “Diagnosing and Treating Chronic Fatigue Syndrome.” Practicing in Great Britain since 1982, she has treated about 5,000 patients who have chronic fatigue.

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MYALGIC ENCEPHALOMYELITIS (a/k/a chronic fatigue immune dysfunction syndrome)

“International Consensus Primer for Medical Practitioners”

Please note that of the 26 authors listed, only seven are Americans. The world is way ahead of the U.S. on this.

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The Bad Fellow

[I am falling further and further behind in posting because showering, washing dishes and doing the laundry and grocery shopping is sucking all the energy out of me. No strength left. I do some writing but can’t get anything finished. At the beginning of January, the county authorized me for 14 hours a week of home health aides. It is now the middle of April and I have not received one iota of help. If I don’t get any help by next week, then I’m initiating legal action against the county. The law says I should be getting help, but the county—as always—does not follow the law. Meanwhile, I’m going to post some of my unfinished blogs just so you’ll know what you’re missing.]

So I went to see Dr. Andras Perl at Upstate University Hospital because on one of the psychoneuroimmunoendocrinology (PNIE) web sites I had found him listed as an immunologist. At the time of my appointment I was being interviewed by a fellow—a fellow is a person who has completed medical school, internship and a residency and now wants to do research.

My subjective impression is that virtually all of the fellows at Upstate are foreign-born. I’m not saying that there is anything wrong with that except that often the fellows’ English is pretty poor. And these fellows are not hiding out in a lab talking to Bunsen burners; they are also doing clinical work and—call me fussy—but I like to have a doctor I can understand.

So in my first go-round I am in the Rheumatology Clinic to see Dr. Perl and being interviewed by a fellow. I ask him a question. He replies “Oh, I wouldn’t know about that. You’d have to see an immunologist—oh, Dr. Perl is.” So we proceed and, ultimately, Dr. Perl refers me to Upstate’s Joslin Diabetes Center, where I am seen by Dr. Tulsi Sharma.

Much later (like ten minutes ago) I go on-line to learn something about this foreign-born person whom Upstate calls “Doctor.” What I find is virtually nothing. If there is one thing a doctor does, it is build a massive curriculum vitae, which is fancy-people’s way of saying “resume.” (The functional difference is that a resume is no more than two pages and a curriculum vitae is no less than two pages.) Check out your medical specialist and you will find pages and pages of information about where he went to school (including all foreign countries), what degrees he has, where he’s worked, what research he’s done, what papers he’s written and what awards he’s won.

After diligent searching, what is available about Tulsi Sharma is that she has been working at Upstate for five years, and that on “MyChart”—what Upstate tells me—she has an M.D. On other internal Upstate pages it says that Sharma has an MBBS. What Wikipedia says is that an “MBBS is an abbreviation for Medicinae Baccalaureus, Baccalaureus Chirurgiae, or Bachelor of Medicine, Bachelor of Surgery in English, the degree given to doctors in countries following British tradition.” Another site says that whether or not an MBBS is the equivalent of an MD is all dependent on what courses were taught in the country that granted the MBBS degree.

Am I being seen by a physician or a technician? From Upstate’s on-line information there’s no way to tell. From “Doctor” Sharma’s behavior, I’d guess she’s not much above a secretary. According to a psychologist, in America the average physician has an I.Q. of 120. I know a couple of really smart physicians. In order to get an average, those physicians have to be balanced out by a couple of other physicians who are dumber than mayonnaise. I’ve known them, too. (See also psychiatrists Thomas Falcci and Roger Levine.) . . .

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