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.) . . .

Posted in American medical industry, disability rights, Fraud, Medicaid, Medical care, Medicare, Onondaga County, physician, Values | Tagged , , , | Leave a comment

Funny Thing About That

Last week I got a letter from Crouse Hospital. It was addressed to “Dear Patient” and was co-signed by Nancy Williams, head of Patient Relations, and Betty O’Connor, director of nursing.

The letter invited me to dinner on Thursday, April 10, because I was “a past recipient of Medical-Surgical care”; the purpose was to discuss the care provided on 5 South.

It would be a focus group of 10-15 women, first-come first-included. After we had dined and focused, we each would be given a complementary $75 gift card for our time and travel. We were asked to RSVP to a secretary in Administration.

I RSVP’d within minutes of receiving the letter, then sat back and waited for them to renege on the invitation. I believed that the letter had been sent out to random patients and that they didn’t want to hear from me specifically. I wondered how long it would take them to realize who they’d invited, and who would dis-invite me, and what reason would be given.

Meanwhile, I reflected on the reasons why my experience on 5 South had been so bad, what priorities I would ascribe to the problems, and what solutions I could recommend. I was hopeful that Crouse actually wanted to learn from their patients. I am far removed from the horrendous 104 days I spent on 5 South, and have benefitted so much from the alternative therapies I instituted that I was prepared to be helpful, not vengeful.

This morning the dis-invite call came from Nancy Williams. The reason given was that 5 South is mostly a surgical floor and the focus group was intended for post-surgery patients.

Do you believe her?

I don’t believe that Crouse Hospital could write a letter intended solely for post-surgical patients and not mention that in the letter. And why would they only want to know about the nursing care for surgical patients? Don’t us medical patients matter?

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Why I Haven’t Posted

I’m not dead, just thinking.

The story goes that when Bill Gates was a kid, his parents set up the basement as his private apartment, installing an intercom to reach him. One day his mom repeatedly called him on the intercom to come to supper but he didn’t answer. When he finally came upstairs, his mother asked him why he didn’t answer. He is said to have replied, “I was thinking, Mother. You should try it some time.”

Later his parents took him to a shrink. After the requisite interviews, the psychiatrist said, “He is the way he is and he isn’t going to change. Learn to live with it.”

Moral of this story: I’m thinking; I’ll write when I’m ready. Hint: Currently I am working on a letter to Upstate Medical Hospital’s medical director. I have concluded that God made me intolerant of medications so that I can stand outside the medical industry and comment on it. I mean, seriously, what have I got to lose?

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Wednesday 2 April 2014


Seriously amazing. The temperature is 52 degrees, the crocuses are blooming, the tulips are sprouting, and the snow piles in the corners of parking lots are down to four feet. This is incredible. This is spring in Central New York—and it’s only April 2!

I started the day with Reiki. It just doesn’t get any better than that. Last week I started a day with Time Warner. It just doesn’t get any worse than that. Did you know that Forbes did a survey of the top 17 corporations and their customer service ratings? And Time Warner and ComCast, respectively, got the worst and next-to-worst ratings? And Time Warner and ComCast are merging? I figure that moves the citizens’ revolt against corporate America significantly closer.

Time Warner sent two guys to hook me up to DVR. Neither one could answer my questions about how to operate the system. And, no, there is no written manual; Time Warner doesn’t do that. I have found Time Warner to be revolting for several years. The local vice president’s name is Jeff Unaitis and his phone number is 634-6242. Why don’t you call him up and tell him your problems with Time Warner? He’s getting paid a lot of money to take your call.

Anyway, so I started today with Reiki. One of the Reiki ladies from Crouse Hospital comes to my home for a fee. And you know what she does? She basically channels God to bring me healing. Ain’t that amazing? Immediately she arrived, she told me that I look so-o-o much better. The chiropractor says I’m stronger and the medical massage therapist says I’m heartier. Hey, am I getting it on, or what?

After the Reiki lady, THE WHEELCHAIR REPAIRMAN CAME! It only took four months to get him here. Can you imagine having a defunct alternator on your car and having to wait four months for repair? This is Medicare. This is BIG/GOVERNMENT/BIG/MEDICINE. This is total crap, and—right after Time-Warner-ComCast—the second reason why the people are going to revolt pretty soon. The leading edge of the baby boomers were—like me—born in 1946. As we age out into Medicare we are going to do some serious ass kicking. This is not an acceptable situation.

The wheelchair man’s company required him to require me to hand-write a full page letter asking for Medicare to pay for repairs, and what’s up with that? Since when do you have to say pretty-please to an insurance company? What is going on here? They don’t even let you sign a pre-printed letter. Questions; questions—questions should be asked. When was the last time you hand-wrote a full-page letter? Yeah, me too. I thought I was going to get gangrene in my hand or something.

So after the wheelchair man, I boarded Medicaid transportation. The driver is also the owner of a new transportation company. He has two buses, himself and one other driver, and a woman relative in the office. He’s been in business for five months; it took him a year to get approval from the state. Part of the problem is that Able Medical Transportation’s lawyer is writing letters to Albany trying to block every new vendor who tries to get Medicaid business in Onondaga County.

Basically, the lawyer says that Able used to have about a hundred vans in the business and now is down to fifty and that should be taken as an indication that there isn’t enough business to support a new company. Basically, that is bullshit. The reason Able can’t stay in business is because Frank Taddeo, the previous owner, was engaging in criminal corruption with Wayne Freeman, co-owner of Medical Answering Service. Let me be perfectly clear: I have no evidence that this is factually true. What I do have are some absolutely first-class stories from some sources who are so solidly viable that your own mother would believe them.

What appears to have happened was that Freeman was giving Taddeo illegal business advantages in exchange for whatever Taddeo might have been giving Freeman—Freeman, by the way, was fined $80,000 and forced to sign a Corporate Integrity Agreement with the NYS Office of the Medicaid Inspector General. AND YOU PEOPLE SAY THAT MEDICAID RECIPIENTS COMMIT FRAUD??

Dear hearts, the most fraudulent people in the Medicaid system are the subcontractors and the government administrators, not the recipients. That’s where the big money can and is being made in crooked dealings. But did I say that Freeman and Taddeo were engaged in corrupt practices? I did not. I only said they APPEARED to be—and on any given day you can get at least three people to swear that I am psychotic.

All I know for sure is that since the Inspector General worked over Freeman, Able Medical can’t get enough business because they’re a freakin’ bad company. In a good capitalist society, the best business gets the most customers and Able is being put out of business by its own bad practices—broken-down dirty vans, broken-down drunk drivers, etc.

So today I went to a new physician, and maybe I’ll tell you about that tomorrow.

Then again, maybe not.

Posted in Alternative therapies, Fraud, God, Government Services, Medicaid, Medicare, Onondaga County, Poverty, power wheelchairs, Transportation, Values | Tagged , , , , , , , , , , , , | Leave a comment