“I Don’t Know; I Really Don’t.” (Part IV)


Without aides—

I only get a shower about once a week.

The bed sheets get changed about twice a month.

My income is $834/month. I spend about $60/month on private-pay aides.

Because there is no one to wash the dishes, I have to spend money I don’t have on environmentally bad paper and plastic plates and utensils.

Because there is no one to cook, I have to get Meals on Wheels.

My floors have not been swept, mopped or vacuumed in months.

My tables, shelves and windowsills have not been dusted in months.

Black mold is growing in the toilet.

My houseplants are dying.

I’m too tired to get out of bed today and don’t know what to do about tomorrow.

The director of Long Term Care wants me to go into Managed Care. I don’t want to be “managed”; I want to be free to make my own choices.

The county only contracts with five of the 56 licensed home health care agencies in Onondaga County.

The only people working as home health aides in the city are from the Southside and come with “attitude.”

Aides from the surrounding towns and villages will not come into the city either because they are afraid to drive there, or perceived racism. (In a random test of aides living outside the city, they perceived the city as being as much as 75% black. Fact: it’s 28% black.)

Aides are paid about $10/hour. Neither the director nor the commissioner know what the rate used to be or how long it’s been since it was last raised.

My last aide, who only had been with me two weeks, declared me a racist based on a single statement, and walked off the job leaving dishes half washed, laundry in the washing machine and a pot boiling on the stove. Why didn’t his agency tell him to finish his shift, then come to the office to discuss it? Why did the agency terminate me instead of the aide?

The previous aide was on her cell phone all the time. When reported, her agency took no action to discipline her. When I did, she resigned from my case, stating that I was “rude.” The agency fired me instead of her.

If the rate of pay for Medicaid aides were raised, would it draw a higher class of people to the job? If there were more aides than clients, would agencies start serving their clients instead of their employees?

Or is all this because I post blogs and file complaints when the service is below the standard set by law? Am I the victim of retaliation and discrimination because I speak freely?

Are the agencies in Onondaga County afraid to take my case because they know they are providing substandard service? Or is the county only contracting with substandard agencies? Or are there no quality agencies contracting with Onondaga County because the Medicaid rate is so low that there’s no money in it?

And the commissioner of Adult and Long Term Care says he doesn’t know what to do; he really doesn’t.

Posted in activism, disability rights, Government Services, Medicaid, Medical care, Onondaga County, Poverty, Powerlessness | Tagged , , , , , , , | Leave a comment

Call-a-Bus Meets Anne Woodlen


We interrupt this series of blogs about Medicaid patients being unable to get home health aides in order to bring you a short history of Call-a-Bus.

Call-a-Bus, hereinafter referred to as CAB, is public transportation solely for people who are disabled, not people who just are poor or old, although they frequently are that, too. CAB is a subsidiary of Centro bus company.

Centro is proud to say that they created the paratransit service prior to 1990 when the Americans with Disabilities Act (ADA) was passed. Big whoop. Some guy was made head of CAB but he only held the position briefly. Thereafter, Linda McKeown became the manager and continues to manage some 25 years later. She managed it as a substandard service, which is to say that it operated below the standards set by law. When an investigator asked me why I thought she did that, I replied, “I don’t think she’s smart enough to understand the regulations.”

First, you have to apply for use of Call-a-Bus. Back when I started using CAB in 2001 your application might not be acted upon for as long as six months. Fact: the law requires a decision with 21 days or you ride anyway.

The call-takers were bullies. They had absolute control over whether you traveled or not and they used that power to be mean. They were not serving the public; they were ordering it around. Riders had no rights. CAB operated on a take-it-or-leave-it basis. Nothing was negotiated as it was supposed to be. Rides were being denied because there weren’t enough buses.

Call-takers approved or disapproved ride requests on the basis of medical diagnosis, e.g., people without one iota of medical training were deciding if a person with cerebral palsy got to ride or not. Cerebral palsy can manifest as mildly as a gimpy arm or as extremely as being unable to see, limited ability to speak, inability to walk or self-feed. And, under Linda McKeown, clerks without medical training made judgments about medical diagnoses. CAB wasn’t supposed to be using medical diagnoses at all. Eligibility was supposed to be based on functionality: Can you walk one block? Can you stand for ten minutes? Can you climb three stairs?

The call-takers based your ride scheduling on the line bus schedule in your neighborhood, plus or minus one hour. If you lived in the suburbs that only had four line buses a day then you might have to accept at pickup at 10:00 a.m. for a lunch appointment downtown; your earliest return might not be until 2:30 p.m.

If you asked for a pickup at 4:15 p.m., you would be picked up whenever it was convenient for McKeown’s people to schedule it. Then you could be kept on the bus for hours. One person, going from James Street to a place near Carrier Circle, was kept on the bus two hours for a 12-minute trip.

Our major problems were with the call-takers, working with McKeown literally looking over their shoulder, but there also were problems with the drivers. For instance, one driver folded up a manual wheelchair and drove the bus with one hand while he held the chair with the other. Another driver folded up a wheelchair and left it loose, rolling up and down the aisle.

I was almighty distressed with all the problems so friends and advocates told me that there would be a meeting with McKeown and I should bring my problems and ask her. I attended the meeting at which McKeown sat on a raised platform above us and refused to answer my questions. I left in tears. Thereafter—i.e., after McKeown left—the attendees decided to form a committee to deal with the abuses and ineffectiveness of Call-a-Bus. It was named the Public Transportation Advisory Committee (PTAC), despite that some us intended to do a heck of a lot more than give advice.

Beata Karpinsky, director of advocacy at Arise, invited us to meet at Arise and thereby installed herself as functional head of the committee. Nothing happened until or unless Beata wanted it to. Linda McKeown was invited to come to the meetings, which she did. She came without any preparation, even to the point of having to borrow a paper and pencil if she wanted to make a note. She refused to give out any information. She would not tell us how her office operated, what the process was for ride scheduling, on what basis rides were allowed or disallowed, how many people she had working for her, how many buses were on the road, or any other thing. She was a tyrant, exercising complete control over the peasants.

After a couple years of this, Beata set up a conference call with David Knight, an attorney with the Federal Transit Administration’s Office of Civil Rights. Beata had first made contact with him about a year earlier but neither had followed up nor told us about him. David and I quickly developed an effective working relationship, which appalled Beata. “How dare you talk to him like that?” she asked. I talked to him “like that” because I was an intelligent citizen with a right to have her problems solved, and he was an intelligent government employee who believed he was there to serve the needs of the citizens.

David Knight told me that it is against the law for a paratransit company to deny rides based on “capacity constraints.” If Centro didn’t have enough short buses to carry the load then they had to buy more. If, as often happened, you couldn’t get a phone call through to CAB then Centro had to add more telephone lines and more call-takers. Disabled riders, by God, federal law and Attorney David Knight, had rights. And I was learning about them, which was to prove costly for Centro.

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“I Don’t Know; I Really Don’t.” (Part III)


Continuation to http://annecwoodlen.wordpress.com/2014/08/05/i-dont-know-i-really-dont-part-ii/

Around this time—“this time” being near the beginning of June—Long Term Care’s nurse supervisor, Marge Owens, named the licensed home health care agencies with whom the county contracts: All Metro Health Care, Home Aides of CNY, Interim Health Care, Maxim of NY and Stafkings Healthcare System.

A licensed home health care agency provides home health aides who will do housework and personal care, e.g., wash the dishes and the patient. A CHHA (pronounced “Chah”–Certified Home Health Agency) may provide home health aides and does provide nurses, who change catheters, bandages, etc. There are six CHHAs in Onondaga County and the county contracts with two or three of them—St. Joseph’s Hospital, maybe St. Camillus Home Care, and the aforementioned substandard Visiting Nurse Association.

Now here’s the problem with Owens’ list of five agencies: in about 15 years of having home health aides, I only have worked with Home Aides of CNY and Stafkings (their nurse kept giving me a hard time about having aides doing “gourmet cooking”; in fact, we cooked meatloaf and potato salad). I never had had any contact with Interim, Maxim or All Metro. So what is going on here?

I suspect that I am being denied aide service because I filed an effective complaint against the VNA. That’s retaliation and discrimination for being a whistleblower and it’s not allowed. It also raises the possibility that the agencies the county contracts with are substandard. Consider this possibility: the agencies get their county contracts by making a financial kickback to the Republican Party. In return, the agencies are allowed to provide substandard service and get protection from the county.

I am not saying that this is what is happening. I am saying that this is the way it used to be done—um, six years ago?—and somebody should investigate if it is still being done. Maybe agencies won’t pick up my case because they know they are providing substandard service and will be caught out. And maybe they are getting away with substandard service because they bought their contracts from the county.

Here is a question: the NYS Dept. of Health lists 56 agencies that provide home health aides in Onondaga County (http://homecare.nyhealth.gov/search_results.php?form=COUNTY&rt=onondaga&show=LHCSA&PHPSESSID=874cb536f77f4acb6ebc0ec4123f3f1a#LHCSA ), so why isn’t Onondaga County contracting with, oh, 10 of them? What the heck, why not all 56? There are many agencies that are staying in business doing this job of providing home health aides, so why isn’t the county working with them?

Onondaga County says the list of Medicaid patients awaiting aides is longer now than it ever has been; there is a shortage of aides. Maybe if the county asked the other 51 agencies then they would find that there isn’t a shortage of aides. Maybe there’s just a shortage of agencies that will provide kickbacks to the county. I don’t know but I sure wish somebody—the NYS Dept. of Health (DOH) or the DOH Inspector General or the Office of the Medicaid Inspector General—would investigate.

Moving on, Adult and Long Term Care Commissioner Robert Long says that the wages paid to aides are too low to attract people to the job. He says that Medicaid wages to aides are set by the state and he’s gone to Albany and tried to get the wages raised but, he says, it has to go through the state legislature and that isn’t happening. Do I really believe that aides’ wages are set by the Legislature? Naw, I don’t much believe it, but I have been unable either to confirm or refute it. I do, however, have an appointment with State next week to try to find out.

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“I Don’t Know; I Really Don’t.” (Part II)


N.B. The Onondaga County web site states that Adult and Long Term Services includes Aging, Long Term Care, Veterans, Adult Protective and Mental Health; Commissioner Long’s secretary says it includes “Aging, Mental health, NY Connects, Protective Services, Veterans.” [“Nancy Lell/Secretary To The Commissioner/Onondaga County Department of Adult & Long Term Care Services/(Aging, Mental health, NY Connects, Protective Services, Veterans)].” She also answers the phone “Dept. of Mental Health.”

Commissioner Long has a lengthy history of working in mental health administration. Maybe we should request a time-audit to see how much time he is devoting to mental health as opposed to the other departments—whatever they may be—that he supervises. Or maybe we should check the secretary’s contributions to the Republican Party and her standing on the original Civil Service list. They’ve had seven months and still can’t properly identify themselves: that’s incompetence.

Continuation to http://annecwoodlen.wordpress.com/2014/08/04/i-dont-know-i-really-dont/

So the County Executive’s Office is saying I have exhausted “all” the agencies that provide home health aides and I just plain don’t believe that. You have to know me to hate me and most of the licensed home health care agencies in Onondaga County have never met me.

When government services are sub-standard then I do file complaints. That is true. Logically, based on what the County Executive’s Office is saying, to be “cooperative” in Onondaga County means to accept substandard service, i.e., service that is below the level required by law.

The Visiting Nurse Association (VNA) provided substandard service to me, so I filed a complaint with the NYS Dept. of Health (DOH), which investigated and reported that the VNA was in violation of federal Title X and was developing a plan to get right. When I asked the NYS DOH man what was Title X, he did not answer me.

Ladies and gentlemen, I propose that Congress vote a new federal civil service law that says: If you work for the government and a citizen asks you a question and you don’t answer it then your ass gets fired. That would return the government to being “for the people.”

So my next question is “Who are ‘all’ the agencies?” I ask the ladies of Long Term Care and they won’t tell me. What they do tell me is that the list of agencies with whom the county contracts is protected by HIPAA. WTF?

When HIPAA first was visited upon the country, the Good Doctor gave me the HIPAA law, asked me to read it, and advise him of what I, as a smart patient, thought about it. And what I found when I read the document was a litany of statements about who can’t talk about what to whom—and every item ended with ‘unless the doctor decides to.’ Virtually every protection that is supposed to extend to every patient can be abrogated by any physician.

And what I have learned since the Health Insurance Portability and Accountability Act (HIPAA) was passed in 1996 is that institutions—nursing homes, hospitals, government agencies—routinely invoke it in order to refuse to answer citizen’s questions. HIPAA was intended to protect the privacy of patients; it is now being used by agencies to protect themselves from having to give patients information that either would (a) reflect badly on the agency; (b) admit wrong-doing on the part of the agency, or (c) empower the patient.

For months I asked the ladies of Long Term Care for two things: the names of the home health care agencies with whom the county contracts, and the gross number of Medicaid cases that are waiting to be served by aides. Long Term Care refused to give me the information, often citing HIPAA. Those two questions have nothing to do with patient confidentiality; they have to do with county malfeasance.

I had been approved for home health aides in January. Around May, I got an aide. She came from Interim Healthcare, which was substandard from the get-go. Management failed to follow through, made commitments it didn’t keep, and generally lied. Nevertheless, the aide they finally assigned to me, Sha’Ron, was pretty good. The main problem was that she was on her cell phone all the time, and when I say “all the time” I mean, on average, she couldn’t work an hour without getting on her cell.

Several times I talked to her about it but her behavior did not change. I called the office and talked to the manager (?) Nick. He had no policy regarding cell phones, and made up one on the spot: aides should only use cell phones in an emergency. He offered no intervention, advice or alternatives regarding Sha’Ron. The next day we went grocery shopping. When I couldn’t reach something from my wheelchair, Sha’Ron was nowhere in sight. I finally found her outside on her cell phone and told her sharply that she simply had to stop using it.

The next day, Friday, she went to Interim, resigned from my case and told them I was rude. What should have happened at this point was Interim management should have asked me for my side of the story, then counseled Sha’Ron and assigned a new aide to my case. What did happen was Interim notified Long Term Care that they no longer would service my case. Neither Interim nor Long Term Care notified me that I no longer had aide service. I only found out on Monday morning when I started making phone calls to find out why my aide hadn’t shown up.

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“I Don’t Know; I Really Don’t.”


The NYS Dept. of Health lists 56 licensed home care agencies that serve Onondaga County; the Onondaga County government only contracts with five of them.

Everyone says that right now the list of patients on Medicaid who are awaiting home health aides is longer than it ever has been. “Everyone” includes Mary Douglas, nurse/case worker; Marge Owens, nurse/supervisor; Joanne Spoto and/or Decker, director of something not clearly defined.

Around December 2013 the county executive, with the approval of the county legislature, re-ordered county government departments, including the Dept. of Social Services, the Office of Aging and Youth, and the Dept. of Health. Now nobody knows who does what—and the Post-Standard has not reported the reorganization nor has Onondaga County sufficiently updated its on-line information. There are 77,000 Onondaga County residents who receive services and they don’t know where to turn.

Some of what I have figured out is that there used to be a Dept. of Social Services, with David Sutkowy as commissioner, a Dept. of Health and an Office of Aging and Youth. There now is a Dept. of Social Services-Economic Security with Sarah Merrick as commissioner. David Sutkowy now is the commissioner of the Dept. of Children and Family Services. Robert Long, formerly director of Mental Health Services, now is commissioner of Adult and Long Term Care Services, which includes Aging, Long Term Care, Veterans, Adult Protective and Mental Health Services.

So I called all the way up the line—Douglas to Owens to Spoto-Decker—and repeatedly got told that the waiting list for aides is longer than it ever has been, so I called Commissioner Long and asked him what he was going to do about it. “I don’t know,” he said, “I really don’t.”

I described to him my circumstances: I am 67 years old, a resident of Onondaga County since 1966, on Medicaid since 1991 and receiving home health aides since around 1998. I have 14 chronic illnesses, including myalgic encephalomyelitis, diabetes mellitus, nephrogenic diabetes insipidus, chronic kidney disease, severe obstructive sleep apnea and pulmonary fibrosis. I have an indwelling catheter, power wheelchair, breathing machine and hospital bed.

In 2013 I spent eight months going back and forth between a hospital and a nursing home. Re-established in my own home in January 2014, Mary Douglas assessed me as needing 14 hours per week of home health aide service. Marge Owens signed off on the Care Plan and it was put on the “call-out list,” which means it was electronically circulated to the agencies that have contracts with Onondaga County to provide aides under Medicaid. And then I waited.

And waited.

And waited.

Being poor and dependent on the government for necessary assistance teaches you a lot about patience. Finally I started making phone calls. Douglas told me that the agencies said they didn’t have any aides they could send for my case. “Why not?” I asked. “I’ve been waiting months. Surely they have serviced other cases; why not mine?”

“I don’t know,” Douglas replied.

“Well, how about asking them?” I said. Douglas seemed surprised by the concept. Thereafter, she didn’t follow up.

I called Douglas’ boss, Marge Owens, and went through the same series of questions. She also didn’t know and didn’t find out for me, so I called Owens’ boss, Spoto-Decker, and she said she would find out. She never called me back and when I called her back then she wouldn’t give me a straight answer and kept changing the subject.

So I called the County Executive’s Office and somebody named Pam said she would find out why I couldn’t get aides and call me back. She didn’t. When I called her back then Pam said, “You have exhausted all the agencies . . . you’re kind of uncooperative.”

Well, in the first place, blaming the patient is definitely not the way to go, particularly when I’m the patient.

In the second place, am I being discriminated against because I am an effective activist? When I was in the hospital for 104 days because they couldn’t find a nursing home where I could be placed, the care coordinator asked the representative of Van Duyn Home and Hospital, which is the county-owned skilled nursing facility, if they would take me. The Van Duyn representative said, “The woman who writes a blog and files complaints with DOH [the NYS Dept. of Health]? No way!”

Babe, it’s called Freedom of Speech and exercising my rights as a citizen. Only in Onondaga County does that get you denied appropriate services.

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Trying to Talk to the Doctor (Part II)


Dr. Kelly,

Back to your first email—I have been worked up by three allergists and four rheumatologists in the Syracuse area. The allergists all say “This is beyond my area of expertise—out of my territory.” The rheumatologists tell me there is nothing wrong with me; what they mean is my test results do not match the results for any diseases they treat. Fact: they have no tests that get at the heart of the problem.

In one article I read—perhaps from Dr. Myhill—the statement was made that the problem is with the neurons inside the cell. Since regular testing always looks outside the cell, the test results always come up normal, which is misleading.

In a decade of searching, I have not found a single immunologist in the Syracuse area. If you can find someone to refer me to, I would eagerly accept.

I have reacted to every drug I’ve taken for several decades. One trial of Lantus lasted six months before going bad; the next trial went bad in six weeks. A dozen years ago I went into a hypertensive crisis following a dentist administering Anbesol; last year my arm got red and swollen and my fingers itched within minutes of an antibiotic being added to a saline IV.

ME/CFIDS is all about “post-exertional neuroimmune exhaustion.” At its worst, following an extreme demand for exertion of some sort, I have had episodes in which I am completely unresponsive. I am fully conscious and can hear but I cannot speak, open my eyes, or make any movement. The episodes last two or three hours and then normal responses start to return. In the literature there is reference to neurons shutting down in self-preservation. I find this entirely bizarre and don’t understand it, but it certainly describes how I felt. At no time have I been able to access a neurologist for evaluation. (Several of these episodes occurred while I was inpatient at Crouse Hospital. The hospitalist said, “You don’t have a brain tumor and you haven’t had a stroke, so you don’t need a neurologist.”)

I have had home health aides since 1998, however, I was without assistance for five of the past six months. During the one month (May) that I did have an aide, my glucose average dropped about fifty points. In June, it went up again. Two weeks ago, I got a new aide and my glucose numbers started to drop again.

Where does this put us? Start with the fact that ME/CFIDS is a condition in which the patient is less able than an average person to respond to the normal stresses of daily life. Experience shows that taking a shower will raise my glucose level by 50 points; grocery shopping with an aide raises it 100 points; taking Medicaid transportation to suburbia to see a physician raises it 150 points. Everybody knows that stress raises blood sugar, but when compromised by ME/CFIDS, everything is stressful, not because the stress level is raised but because the tolerance level is lowered.

So is the best way to lower my glucose level to have an aide who does more things, thereby reducing the demand for me to exert myself?

Eating often lowers my blood sugar. One day before supper my glucose was over 600. I went out for a burger, fries and ice cream. In an hour, my glucose dropped about 50 points. A few days later it was 575. I had a tuna sub and triple chocolate ice cream; it dropped 80 points. My theory is that not eating becomes stressful, thereby driving up my glucose, and any kind of eating reduces the stress and therefore drops the glucose level.

I look forward to your next reflections and recommendations.

Anne C Woodlen

Hello Anne, perhaps when you meet with Dr. Elliott from Nephology, he could tell you about whether or not you should try the ketogenic diet. You will likely need to provide him with information on it as he may not be aware of it off hand. I will look into referring you to an immunologist in town. I will send you scripts for the fasting insulin and glucose tests. I hope you feel well.
J. Kelly

Dr. Kelly,

I do not expect to meet with Dr. Elliott in Nephrology. I saw my primary care physician on April 2 and he referred me to the Nephrology Clinic, which did not schedule me for a first appointment until July. Then they canceled that appointment and re-scheduled me with someone else in August. Then they canceled that appointment and re-scheduled me with Dr. Elliott in September. Based on experience, I assume they will re-schedule me with someone else in October. I now have waited four months with no end in sight.

The country has its panties in a twist because the Veterans Hospitals have been making people wait three months for appointments. Upstate makes poor people wait indefinitely and nobody bats an eyelash. I am frustrated to the point of anger.

On second thought, I think it likely that there is no point in changing diet–again. I did eight months on a vegetarian diet; my glucose did not go down. I did six months on the Meals on Wheels diabetic diet; my glucose did not go down.

I had a home health aide for one month: my glucose level dropped. When she quit, my glucose went back up. I got another home health aide: my glucose level dropped. When he quit, it went back up again. I am supposed to have had aides 14 hours per week for the last seven months; I only have had aides for six weeks. If you are poor, you cannot get an aide. The county commissioner says, “I don’t know what to do about it; I really don’t.”

My diabetes is not about what I eat; it is about what I do. I have to do more than I am able to, therefore my glucose continues too high.

You did not refer me to “an immunologist in town.” You referred me back to the Rheumatology Clinic; they called this morning. As stated in my last email “I have been worked up by three allergists and four rheumatologists in the Syracuse area.” There are no immunologists in town. Upstate does not consider it a priority.

I received what apparently are the orders for testing. They are in a form that I have never seen before but I will take them to my lab and trust they recognize them.

Anne C Woodlen

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Trying to Talk to the Doctor (Part I)


Hello Dr. Myhill. I am an endocrinologist in Syracuse, NY. I received your name from a patient of mine with CFIDS. She is adamant that she cannot tolerate any medications. She has very poorly controlled type 2 diabetes mellitus. Her hemoglobin A1c is over 15 and her blood sugars all run from 400-500. She tried one insulin in the past but states she cannot tolerate it and declines any others. Have you ever heard of any situations like this before? I have not found any information in the medical literature in relation to this. Any advice that you may have would be highly appreciated. Thank you so much in advance for your time. Jennifer Kelly

Dear Jennifer
Gosh – no easy answers here!
Firstly your patient should do a ketogenic diet – see

http://drmyhill.co.uk/wiki/Ketogenic_diet_-_a_connection_between_mitochondria_and_diet

That will greatly reduce the glycaemic load and MAY be all that is required.
What exactly does she mean by intolerant of? Allergic?
Does she have insulin resistance or is she insulin deficient? (ie what are her blood insulin levels). The point here is that insulin resistance may result from micronutrient deficiencies (eg B3, zinc chromium) or from inhibition by toxins (either endogenous from the fermenting gut eg alcohol, D lactate etc or exogenous such as heavy metals?).
Do get back to me if you get stuck
Best wishes
Sarah

Good morning, I am forwarding to you the email I received from Dr. Myhill. Very informative and it was so nice of her to respond so quickly. You may want to try the ketogenic test that she mentions. If you’d like to have a fasting insulin test performed to further answer her question of insulin resistance, I will mail a lab script for you to have performed fasting some time at any lab. If there are other labs you’d like to have ordered, please let me know. I’m sure Dr. Myhill would be happy to answer any questions you would have also as her website was open to questions from doctors and patients. Keep in touch and have a nice weekend. J. Kelly

Dr. Kelly,

A web site says that the Keto diet is contraindicated if you have a “history of kidney failure.” I don’t know what that means. I have stage III chronic kidney disease as well as nephrogenic diabetes insipidus. Am I in or out?

I didn’t see any “ketogenic test.” Where is that?

Yes, I will do a “fasting insulin test” (fasting glucose test?). Please send script.

I would be inclined to try the ketogenic diet, but I would need help getting started. Would the Irish lass who met with me in February/March (?) be willing to take a shot at this? http://www.ketogenic-diet-resource.com/ looks like it might be helpful.

“. . . Intolerant of? (Allergic?)” I had undiagnosed ME/CFIDS and took antidepressants every day for 26 years. Antidepressants are contraindicated for ME/CFIDS. My theory is that the antidepressants on top of CFIDS for so long a time utterly broke down my immune system. The homeopaths consider this a major toxic load. I do not have classic allergies (I am not generating antibodies) but do have extremely severe hypersensitivity to all drugs.

I may only have tried “one insulin” [three times] but I also have tried many other medications for other things and I react to everything. There is no point in hospitalization to try new things. The history of my relationship with doctors is that they are always looking at the drugs and never looking at the patient. The question is not “What new drug can we try”; the question is “What’s wrong with the patient?” It is about the immune system; it is all about the immune system. (To be continued)

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