- Last Updated: 07 November 2015 07 November 2015
Question-and-Answer Session with Dr. Bell: Excerpts
Q. Could the RBC count be treated, like anemia, with iron supplements?
A. No. These are totally different abnormalities; blood volume in anemia is normal, with the RBC count disproportionately low.
Q. For those who can't tolerate it, is there any substitute for Florinef, like Prednisone?
A. No. While not a "miracle cure," this drug is unique in its effect on blood volume and ability to hold onto salt. Prednisone has only 1/50th the salt retaining power of Florinef
Q. What about other therapies, given the distinction between low RBC patients and low plasma patients?
A. One other drug under study is Midodrine, an alpha agonist. "It has limited usefulness but seems good with the milder cases, and a number of my patients have had a marvelous response to it."
Q. Can you talk about pregnancy?
A. It has long been observed that many women PWCs feel better—even "recovered"—during pregnancy, but the reason for this has been unknown. One explanation from the current study could be the rise in blood volume—an average of 33 percent that occurs during pregnancy.
Q. Can you talk about Dyspnea (shortness of breath) on exertion?
A. "Is it a central mechanism or something the lungs are just perceiving?" Possibly, when circulating blood volume drops; the brain (oxygen-starved) may "read" this as shortness of breath, when in fact the lungs are not affected.
Q. What about food allergies?
A. Bell noted that low blood volume could be responsible for PWCs' apparent food allergies, "which you can't really prove." He noted that, after you eat, your blood pools in the gut—again, less cerebral blood flow, and "even a very small change can cause pronounced symptoms in the brain." (This, Bell said, "is why people take siestas after lunch in civilized countries." It appears that, among Florinef responders, food allergies "vanish" with the drug therapy. There may be other "pseudo allergy attacks" to other substances, because of the high amount of histamine in proportion to blood volume.)
Q. Any relationship to sleep disturbances?
A. Yes. "Our bodies have only one mechanism to get more blood to the brain, and that's to put out more norepinephrine—which can cause insomnia, tremulousness, the jitters"—the fight-or-flight response.
Q. Why do we drink so much fluid?
A. Many PWCs routinely carry bottles of liquid with them because of constant thirst—or is it the body's attempt to bring blood volume up to normal? Bell noted that drinking fluids will not help ("you'll just pee it out"). But IV treatments of vitamins or other fluids often do make people feel better, for a few hours or couple of days—not, presumably, because of the Vitamin C or other "medical" content but simply because of the large quantity of transfused liquid (Just as the fatigue of Addison's disease is controlled with cortisol; people with diabetes—whose first symptoms are generally thirst and tiredness—find that correcting their sugar levels with insulin corrects the thirst as well as the fatigue.)
Other quick points: PWCs may suffer from tachycardia and premature ventricular contractions (PVC) ("which are normal most of the time"); unlike most healthy people, PWCs feel the PVCs in the chest (a new theory has been proposed regarding the role of another heart disorder in CFIDS/ME, subclinical myocarditis)
Bell has not been following progress on Ampligen: "Since that first study, I guess I'm not so enthusiastic about it as a long-term answer; the patients I know didn't have any benefit from it"...
Yes, Reynaud's phenomenon (cold and loss of sensation in fingers, toes) does seem to be slightly increased in CFIDS/ME (sounds like another blood-volume-related symptom to us); similarly, Bell believes that notable facial pallor is one of the most characteristic signs of CFIDS/ME.