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.
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