lthomas521

The allithiamines that are taken by mouth don't depend on the thiamine transporter for uptake, so you might be able to switch eventually. Allithiamines in doses much larger than the RDA for thiamine are extremely valuable for preventing complications of diabetes and are extremely well tolerated. New slogan: "Thiamine. It's not just for beri-beri anymore."

Once your gastroparesis resolves, you might be able to take an allithiamine by mouth. Let us know. It's good to hear of someone recovering!

The Yasmin prescribing information has the following warning, in boldface type: YASMIN contains 3 mg of the progestin drospirenone that has antimineralocorticoid activity, including the potential for hyperkalemia in high-risk patients, comparable to a 25 mg dose of spironolactone. Spironolactone is a diuretic (water pill). An antimineralocorticoid effect is essentially an anti-Florinef effect. It doesn't make sense to me to take a drug that counteracts Florinef. http://berlex.bayerhealthcare.com/html/pro...c/Yasmin_PI.pdf

Do some doctors disregard narrow pulse pressure? Eeek! Sort of like NASA failing to recognize the ozone hole because their computers were programmed to disregard "spurious" readings. A British scientist with an old-fashioned machine found the hole. He didn't believe it at first, so he got a second old-fashioned machine, and they both gave the same answer. If they don't trust the narrow pulse pressure reading, why don't they just feel your wrist?

He's not an "alternative" practitioner at all. He's an epidemiologist. :-)

I was talking to an M.D. who is running for local office. He was trained in India, and he said that Indian-trained physicians have an advantage over U.S. trained physicians. He said that they read the same textbooks, but because they didn't always have access to expensive tests and equipment, they learned to do a really careful physical examination. He said, "We can tell all sorts of things about a patient, just by taking their pulse." That sounded like a sports challenge to me. I'd been standing for a few minutes, so I said, "What does my pulse tell you?" and I held out my arm. He put his fingers on my wrist for a few seconds and said, "You have low blood volume--and tachycardia!"

Wow, a real thiamine deficiency! This is treatable, and your prognosis may be quite good. There are several reasons for thiamine deficiency. Years ago, the most common was inadequate intake, which usually occurs when people have high-carbohydrate, low-thiamine diets (i.e., mainly polished rice). The resulting disease was called beri-beri. It used to be a major cause of disability and death in Japan. The cure for beri-beri was to eat "rice polishings" or, after the discovery of thiamine, to take the vitamin in a supplement. Nowadays, the most common causes of clinical thiamine deficiency are alcoholism (because alcohol interferes with thiamine uptake), gastrointestinal disease (which causes poor absorption), or improperly prepared tube feedings, which simply lack thiamine. Another possibility is a deficiency in the thiamine transporter, which can be genetic. Yet another possibility is thiaminase, an enzyme that could occur in some rather strange foods or can be produced by bacteria in the gastrointestinal tract. If you have a clinical thiamine deficiency and gastrointestinal disease, the answer is to take a thiamine supplement. Ask a pharmacist, preferably one with a PharmD degree, what the options are for thiamine supplementation. I would consider one of the allithiamines, such as benfotiamine, because it doesn't depend on the thiamine transporter for absorption. Ask specifically about that. I know that thiamine cream is used as an insect repellent, but I don't know how well thiamine is absorbed through the skin. Is the cream restoring your transketolase levels to normal? If it isn't, you must do something else, because severe thiamine deficiency can cause permanent brain damage. Thiamine (vitamin B1) is a water-soluble vitamin with a very short half-life, so you have to take it every day. You can self-inject it if you can't take it by mouth. Here's the Web site of a woman who had chronic secondary thiamine deficiency http://www.geocities.com/bron.evans/index.html

Yes. The single most effective thing for me is to take large doses of thiamine (vitamin B1), far more than you would get from food. I didn't seem to have a secondary thiamine deficiency (such as from malabsorption). Other B vitamins seemed to help, too. I don't know why. Then there's licorice, which I use instead of Florinef.

According to the prescribing information, increased sweating can be a side effect of Zoloft.

Have you tried magnesium glycinate (chelated magnesium)? A friend of mine with migraines was told by her doctor to try it. I tried it and didn't have a migraine for several months. I'd ask the pharmacist before trying it, though, to avoid interactions with other medications.

If you wear compression stockings, no one can see whether you shaved your legs or not. :-)

In addition to the old "invisible illness" problem, you may be dealing with people who think that illness is the result of sin. They may feel that if you were really on good terms with the Almighty, then you would be healed. Have you preached anything about Job lately? In particular, have you pointed out how wrong and annoying "Job's comforters" were?

It's not just the standing, it's the bending over! The worst thing for me is what I call the Japanese drinking bird maneuver: http://jchemed.chem.wisc.edu/JCESoft/CCA/C.../BIRD/BIRDB.HTM But there is something you can do about the dog fur while sitting down. Just make sure you do it outside!: http://www.furminator.com/

Back when I worked for an international pharmaceutical company, I had lunch with a bunch of foreign-trained physicians every day. After a while, I stopped salting my food openly, rather than surreptitiously. One of the doctors, a German man who was really nice, finally said, "You really shouldn't put so much salt in your food." I said, "I hate salt, but a nephrologist, an internist, and a neurologist have all told me to put at least this much salt in my food. Otherwise I can't see when I stand up." He was astounded. None of the docs had ever heard of POTS, but the Argentine one took my pulse and said, "If you were my patient, I'd just give you a transfusion." Another one suggested that I get a salt lick for my cubicle.

A few cases of POTS are the result of a mutation in the norepinephrine transporter (NET) gene. However, a lot more of the cases are evidently the result of an NET gene that is not mutated but is accidentally switched off. POTS can also be a side effect of another genetic disorder, such as Ehlers-Danlos syndrome.

The researchers down in Australia found that people whose norepinephrine transporter gene was switched off either had POTS, or panic disorder, or both. So anxiety issues could be just another result, along with POTS, of the same underlying biochemical problem. If you anyone needs a mantra, how about this: POTS is just life-altering, not life-threatening. I thank my lucky stars that I only have POTS, and no anxiety problems.

Hi Dari: Did you have POTS before you started taking Effexor for depression? Did the POTS get better or worse after you started it? Is it working for your depression?

I especially like the "People Opposed to Standing" and "Pulling on Tight Stockings"! Too true! If you are at an appointment with a doctor who doesn't think that your illness is real, POTS could stand for "Pretty Obvious Tachycardia, Stupid"!

I have no idea about whether treatment approaches should differ. Here's my take on what the different types mean: 1. High-flow POTS. You have a normal amount of blood, but your blood vessels are so dilated that your heart is working overtime to keep your pressure up. The problem might be that your blood vessels can't constrict properly, because a virus has damaged the nerves that are supposed to tell your blood vessels to constrict. 2. Normal-flow POTS. You have a normal amount of blood. When you are lying down, you have a normal heart rate and normal circulation. But when you stand up, the blood vessels in your tummy don't tighten up as they are supposed to, so the blood tends to collect in there, and it doesn't get back to the heart properly. In your hands and feet, the blood vessels tighten so much that they turn blue. 3. Low-flow POTS. You don't have quite enough blood, and what you have doesn't circulate properly. You look like you've just seen a ghost: you're pale and cold, and your heart is racing. Your blood vessels in your arms and legs don't constrict properly when you stand up.

It made me feel alert and cheerful. And a little bit too talkative.

The relationship between genotype and phenotype can be very confusing. I guess that the definitive diagnosis of EDS or whatever will have to be a genetic test. For example, when I got my dog as a puppy from the local shelter, they said that he was probably a border collie mix. A few months later, an acquaintance who has done a lot of dog rescue, including sending dogs to a border collie rescue group, said, "Border collie mix? Mixed with what? Another border collie?" When I took my dog in for a sheepherding aptitude test, the guy with the sheep (and a dog ranked 8th in the country in sheepherding trials) guessed that my dog was a purebred border collie that had been turned in to the shelter for being too much of a border collie to be a good pet. My dog passed the herding test with flying colors. Several purebred border collies with papers flunked. In his agility class, my dog performs like a typical border collie, and he even socializes well with other border collies, who sometimes get into trouble because they stare impolitely at other dogs. So recently we sent in a sample of his buccal cells to be tested for a breed profile, to figure out what kinds of dogs were in his ancestry. The result came back as some German shepherd and maybe a little bit of Samoyed. No border collie listed. So, either the test is totally bogus (although it gave reasonable results for my friend's dog, which it said is a Shelty-Shih Tzu mix [a Shel-Tzu, I suppose]), or they didn't get a good starting sample of border collies for comparison, or it just doesn't matter. Phenotypically, he is a border collie. So I guess that if a German shepherd-Samoyed mix can pass so successfully as a border collie, especially if sheep are present, I suppose that FGFR3 mutation could pass for EDS, at least until someone tests for the gene. It would be best to have the proper diagnosis of the gene, to alert you to other health risks and perhaps to enable other people in the family to take advantage of genetic counseling. Best of luck in finding it!

I'm definitely low-flow. But I wouldn't characterize myself as purple. When I was really sick, I was sort of a grayish blue in the face. When I started getting much better, one of my neighbors saw me out walking and said, "Laurie! You're standing! And you're pink!" Why is it that laymen have been able to tell at a glance how sick or well I am? I wish more doctors could. http://www.nymc.edu/fhp/centers/syncope/ci...ots_and_CFS.htm 1) High Flow CFS/POTS is characterized by normovolemia, peripheral vasodilation, and increased peripheral blood flow, cardiac output and microvascular filtration. Evidence indicates a mechanism of defective adrenergic-mediated vasoconstriction associated with post-viral peripheral neuropathy. Therefore, investigations of high flow POTS will not be pursued further in the current proposal. 2) Normal Flow CFS/POTS is characterized by normovolemia and normal supine heart rate, peripheral resistance and blood flow. Upright, splanchnic vascular regulation is abnormal producing venous pooling, intense peripheral vasoconstriction and acrocyanosis. Patients are often hyperflexible and may fulfill criteria for the Ehlers-Danlos Syndrome. 3) Low Flow CFS/POTS is characterized by mild hypovolemia and general decreased regional blood flows related to defects in local blood flow regulation, most notable in the dependent parts of the body and the cutaneous circulation. Peripheral vasoconstriction decreases when upright. The phenotype is distinguished by generalized pallor, cool skin, and often marked resting tachycardia.

Interesting, but it doesn't say which people are purple. :-) I know I have a history of reduced blood volume, and I used to have bad pallor, but no blue and pink mottling of the lower limbs.

Good luck with the PT. Sorry to hear that you have been in such pain. I don't know if you've tried the fentanyl patch, but it might be more tolerable than oxycodone or morphine. It's less constipating.

Most people tolerate gadolinium very well. The main exception would be people whose kidneys are failing. The FDA just made the gadolinium-containing agents put a "black box" warning in the prescribing information about this. As far as I know, the warning applies only to people who have severe kidney disease or who are on dialysis.