The Next Questions (Part II)

Dr. Nancy Klimas:

Back in the hospital, I was kept me in punitive segregation for 104 days because of some unidentified thing I wrote in my blog. I was on Alternate Level of Care, and the hospitalists refused to call a neurological consult despite the fact that I’ve had multiple episodes of what I call complete neurological shutdown. After acutely stressful events I have these episodes where I am fully conscious and can hear, but I cannot speak, open my eyes, or move at all. The episodes last about three hours and clear spontaneously, however frightening they may be.

On Christmas night I left the hospital against medical advice. In the seven weeks since then, I have coordinated a full press of alternative treatments. Twice a week I receive acupuncture, craniosacral therapy and psychotherapy; once a week I get chiropractic, LED, Swedish massage and lymph massage, with homeopathy on a PRN basis. The most remarkable consequence is that the craniosacral massage lowers my glucose about 150 points for about four hours. Last week’s bloodwork shows that my GFR has risen from 45 to 50, CRP has dropped from 13.9 to 13.1, and A1c continues to rise—now at 14.8.

FYI, when I was in hospital I was taking oxycodone, which lowered my glucose to around 350. Then I had an extreme reaction to the oxycodone, had to stop it, and within days my glucose went up to 450. I was not surprised by this; it would seem to me that if you damp out the neurological system, then the “stress” level goes down and with it the glucose level. The hospitalist stated categorically that oxycodone cannot lower glucose.

I have asked every doctor I’ve seen to please search on “CFIDS + glucose.” Not one has done it. I recently went to Upstate Medical Center’s Joselin Clinic for diabetes. I was a new patient with a presenting glucose level of 570. They said they would research CFIDS and glucose, but then told me not to come back for a month and a half.

I have relied on home health aides since 1999, however, after spending eight months on total bed-rest and total care between the nursing home and the hospital, and leaving the hospital AMA, I cannot get home aides. The county has approved me for twelve hours of aide service per week, but the agencies aren’t delivering. Clearly, if I spent more time in bed and less time taking care of myself, then my glucose level would go down. Nevertheless, I am doing my own showers, washing dishes, doing the laundry and going grocery shopping. (I receive Meals on Wheels diabetic diet.) I have not been able to do these things for several years.

It is a joy and a blessing to be able to do these things again. I attribute it solely and entirely to alternative treatments. Additionally, my mood has become extraordinarily stable and pleasant, which I rather think is a result of the craniosacral therapy. I am, by and large, happy. However, my glucose is spiking to over 600 several times a week.

What can you do to help? Do you know of a knowledgeable physician I might see? I have been so ill that I only have traveled outside the county twice in the last dozen years. Cleveland Clinic’s immunology unit refused to take me on a hospital-to-hospital transfer. I have no family and am reliant on Social Security, Medicare and Medicaid. My trust fund’s ability to pay for alternatives will expire in about two months.

Are there any articles that might move a physician? Is there any information on CFIDS and glucose? Are there any recommendations that you might offer? A physician who is a friend tells me that what doctors do when confronted by a rare and complicated case is simply wash their hands of it—it takes too much time to figure out what to do, and time is money. If there isn’t a clear and quick fix, they don’t want to hear about it, so anything you can do or suggest to help is something for which I would be enormously grateful.

Thank you for your time and attention.

About annecwoodlen

I am a tenth generation American, descended from a family that has been working a farm that was deeded to us by William Penn. The country has changed around us but we have held true. I stand in my grandmother’s kitchen, look down the valley to her brother’s farm and see my great-great-great-great-great-grandmother Hannah standing on the porch. She is holding the baby, surrounded by four other children, and saying goodbye to her husband and oldest son who are going off to fight in the Revolutionary War. The war is twenty miles away and her husband will die fighting. We are not the Daughters of the American Revolution; we were its mothers. My father, Milton C. Woodlen, got his doctorate from Temple University in the 1940’s when—in his words—“a doctorate still meant something.” He became an education professor at West Chester State Teachers College, where my mother, Elizabeth Hope Copeland, had graduated. My mother raised four girls and one boy, of which I am the middle child. My parents are deceased and my siblings are estranged. My fiancé, Robert H. Dobrow, was a fighter pilot in the Marine Corps. In 1974, his plane crashed, his parachute did not open, and we buried him in a cemetery on Long Island. I could say a great deal about him, or nothing; there is no middle ground. I have loved other men; Bob was my soul mate. The single greatest determinate of who I am and what my life has been is that I inherited my father’s gene for bipolar disorder, type II. Associated with all bipolar disorders is executive dysfunction, a learning disability that interferes with the ability to sort and organize. Despite an I.Q. of 139, I failed twelve subjects and got expelled from high school and prep school. I attended Syracuse University and Onondaga Community College and got an associate’s degree after twenty-five years. I am nothing if not tenacious. Gifted with intelligence, constrained by disability, and compromised by depression, my employment was limited to entry level jobs. Being female in the 1960’s meant that I did office work—billing at the university library, calling out telegrams at Western Union, and filing papers at a law firm. During one decade, I worked at about a hundred different places as a temporary secretary. I worked for hospitals, banks, manufacturers and others, including the county government. I quit the District Attorney’s Office to manage a gas station; it was more honest work. After Bob’s death, I started taking antidepressants. Following doctor’s orders, I took them every day for twenty-six years. During that time, I attempted%2
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