Priscilla Gilman

I live in VT and am seeing Novak in Mass. He is pretty good, but the traveling is hard. Someone on DINET that I talked to about 18 months ago was seeing Dr. Cohen at Dartmouth. (Sorry, I've lost your name and number.) She found that he was willing to treat her even though it wasn't really his area, but I don't know how it has gone. And now I am feeling motivated to get someone at Dartmouth interested. Maybe even write to the head of the neurology department and advocate for us. Anybody with experience of Cohen they can relate? Anybody desirous of seeing someone at Dartmouth if we can get someone interested? (I do have a cardio there. He's lovely, but not really interested.) Priscilla

A while back I looked into Dr. Shapiro at UVM and I think he is only doing headaches now. Boo hoo, he looked great. (Rachel wrote: "I went to Johns Hopkins back in the 90s and I saw Dr. Robert Shapiro. He was very kind, knowledgeable, and thorough. He is now at the University of Vermont College of Medicine. He specializes in migraines and autonomic dysfunction.")

Hi. I am in VT too. There are not a lot of options here, and I have started seeing a neuro in Massachusettes. But I did have a TTT at Dartmouth Hitchcock years ago and that may be a place for you to start. I have a cardio at DHMC. He is lovely and has helped me, but he doesn't actually know that much about this stuff. I can give you his name if you want. I believe there is someone else on the forum who sees a neuro at Dartmouth; so that might be an option too. To really get someone who knows dysautonomia stuff you will have to go to Mass. or NY. best, Priscilla

Hi Pam, I looked at the Genovations (owned by Genova Diagnostics, formerly Great Smokies) website to see how the tests there compare to the ones I?m talking about. But I could not access any specific information, which makes me suspicious. Also, I must admit, I have come over the years to have a very low opinion of that company after getting wacked out results on a number of tests. In the tests I?ve done with them the erroneous results have been so extreme that the margin of error they demonstrate makes all results meaningless. It is partly because of those experiences that I am cautious about these genetic tests I?m looking into. But I think these tests are for real. The Mayo clinic does them too. Here is a Washington Post article on the subject: http://www.washingtonpost.com/wp-dyn/conte...6041701274.html To save my hands the typing necessary to explain more, here is an excerpt from the article: The liver is responsible for regulating most chemical levels in the blood. When you swallow a pill, the medication typically travels via the bloodstream from your stomach to your liver. There, one or more types of liver enzyme process the drug, breaking it down into forms that are easier for the rest of the body to use. Some of the drug travels on through your bloodstream; the rest is tagged as poisonous and filtered out. The most important liver enzymes in drug metabolism are the ones in the "cytochrome P450" (CYP) family. They process 25 percent of all drugs, including those that cause the most adverse reactions -- antidepressants, anti-psychotics, painkillers, beta blockers (which slow the heart rate and lower blood pressure) and drugs used to treat attention-deficit hyperactivity disorder (ADHD). Say you take a drug that is mostly processed by the enzyme CYP 2D6. If your liver produces too much of this enzyme, it could over-process the drug and flush it right out of your body, and you'd get no therapeutic effect. If, on the other hand, your liver produces too little of the 2D6 enzyme or none at all, the drug wouldn't be sufficiently broken down. Instead, it would build up in your bloodstream. You could overdose on what, for most people, would be a normal dose... ...Like other genes, those that code for liver enzymes can vary by race and even your ancestors' geographic origin. Most people have two good copies of the 2D6 gene, so they produce a normal amount of the related liver enzyme. But an estimated 7 percent of Caucasians have two bad copies of the gene -- or no copies at all. These "poor metabolizers" don't produce any of the enzyme. In my own case I suspect I have one weak copy and one good copy of the 2D6 enzyme gene because I have had trouble with both SSRI?s and beta-blockers (both generally metabolized by 2D6) and because my father was hospitalized because he could not metabolize a 2D6 drug at all. All that gives me a lot to go on, but something definite would be even better. I would love to have a doctor who was into this on his or her own, but I don?t have one. Yet I suspect they would be ready to take in the test information if I could just hand it to them. I went through 16 months of treatment for Lyme a couple years ago. It didn't resolve all my troubles but it did help. Are you at the beginning of that? I hope it works out well for you. best, Priscilla

Hello good people, I?m probably going to get some genetic testing for drug metabolism done. Like so many people I can be very sensitive to some drugs. I?m tired of the hit or miss approach to finding out what I will have trouble with. So I?m considering this as a way to have more to go on, and more for my doctors to go on, in choosing meds and determining dosage. Anyway, I wondered if anybody else had done any of these tests or has any other knowledge-of/experience-with them. For people who are not already familiar with pharmacogenetics and drug metabolism, I will just say that even without the tests I have found the drug tables very useful in understanding what might be going on in my body. I would explain more, but I can?t type that much so here are two url?s for companies that do the tests. You can start to find out more there. http://www.healthanddna.com/professional/p...cogenetics.html http://www.dnadirect.com/ These company's tests are available without a prescription. There are also prescription only tests that are much more expensive and not easily available. best to all, Priscilla

Amy, I've never posted before, but your post has dislodged me from my silence. I can't type much so I won't say much, but my blood pressure also goes both directions, though my highs are not near as high as yours. Without the meds I might get there. I take verapamil and florinef; it isn't everything, but it works ok for me. Somehow the combination keeps my pressure down and helps it stay up at the same time, as well as keeping my hr in a more reasonable range. But I have had to be careful that the verapamil is not causing low bp. Its tricky and I can't say my doctor is what I would like him to be. I'm really glad you have Grubb on your case. Best, Priscilla