Herdswoman

What tearose said. Introspection is good. Letting go is wonderful. But first you have to do the hard, hard work of figuring out what it is that is barring you from enjoying your life. Not easy, but people with POTS can do hard things. This is work that only you can do....no one else knows how you feel, no pill can take it away. Pills can blunt the symptoms, correct chemical imbalances and such but they do not heal. That is "brain work" for you. And once you've done it, you'll feel much better. A good counselor may be able to help you untangle it.

Leah, I don't mean to bail here, but this is not my research. This is Dr. Fine's research and all I did was post it. Read the article carefully. I am reading the article for the fifth time today.....each time I go over it, my understanding deepens. I print it out, highlight it, make notes in the margins, the whole geeky thing. To look at other member's physical conditions from a purely scientific perspective is difficult in a forum such as this. I won't do it. Whether or not I would say 'no false positives' doesn't mean a hill of beans. I am not a doctor, nor do I play one on TV. My best advice is to do what I do: 1. Read the article, think about it, re-read it and look for the answers to your questions. Go over the third paragraph very carefully. Be clear about specificity and sensitivity as they are not the same things. 2. Go to the link I provided and print out the article in it's original form. (DINET tends to make 'accent marks' and apostrophes into question marks when cutting and pasting - I tried to fix this.) You'll want to take a clean copy, as professional as it can be, to your doctor if you think she's missed something. FWIW: I'd be really careful about challenging a senior staff member at Cornell based on my feelings and one research article whose implications are more applicable for gluten sensitivity than celiac disease. Be very careful....how you ask is more important than what you ask. I don't take that cat to the vet unless I have to.

The sinus node connected to the heart bone The heart bone connected to the AV node The AV node connected to the ventricle bone ZZZZzzzzzap, burn, oops. I ain't right. Ain't right at all. But I sure am fun. Ah, the story of the ablation gone wrong........abbreviated version: I was treated for recurrent tachycardia months after delivering a healthy daughter. Referred for ablation in preparation for in vitro fertilization and hopeful pregnancy. Ablation worked. In vitro failed. (cha-ching! the sound of infertility docs getting rich) Tachycardia recurred about 2 years later. Original Electro-doc says it's sinus, not AV node reentry. Misses POTS diagnosis. Insurance changes. New workup with new primary care and new electrophysiologist. We go to the cath lab to do some EP testing. He wakes me up on the table to say he found an AV tract to ablate. Oops. The burn went a little too far, a little too fast. He wakes me up as he puts a pacemaker in my hand, now telling me I am in complete heart block (CHB) and we need to put in a permanent pacer. I've taken care of many a CHB patient and there is only one viable, long term treatment. I know what he says is true. Drunkenly, in my Versed/Fentanyl haze, I recall telling him to put it in on the left side because my right boob is bigger than my left and that might help even things out. He starts talking more to my husband and cruises right past that comment. Nobody laughs. I'm not sure why, after all this is SOP for CHB, what's the big deal? I go to sleep - probably the wisest thing I did all day. I watched myself on the monitor in CHB all night with external pacing patches hooked up front and back......just in case we need them. I wonder "If I go into a ventricular escape rhythm, will these girls know enough to PACE me first intead of defibrillating me into the next dimension?" I relay my experiences with this very thing to my night nurse who swears she will pace me out of V-tach and not defib me out of my last viable rhythm. I wait to see if the inflammation in my heart will subside enough overnight in order to find a fragment of conduction tissue still intact. Will that 'p' wave conduct? It looks like maybe......it does? No. It doesn't. But it does snow. A LOT. We go to the OR 2 hours late.....and wait another hour and half for my doc. I love the man, but I swear he'll be late to his own funeral. I'm worried about the type of pacer I'll get. I'm worried how much this will change my life. I want to race again, I need something that will be very resistant to electrical energy fields. I just sent my motor to the engine builders and I know I am on the hook for at least 4 grand. I want to talk to my doctor. I look up at my nurse anesthestist and tell him I want to stay awake. "OK," he replies, dropping the hammer on big syringe labeled "VERSED". Mmmmm.....all the way to the bottom, good to the last drop is Versed. I cruise along on peachy, happy clouds, waiting to hear Mark come in. He's late, way late. The natives are getting restless. Off at the far edge of my cloud I hear one of them say "What could possibly be more important than the patient who is on the table?" My body is too heavy, too comfortable, but my eyes whip open. "Page him and tell him to get up here" I snapped. The OR is suddenly, completely and utterly still. Pin drop quiet. Far away, past my cloud, at the edge of darkness I hear someone whisper "whoa". I smile as my eyes close. That'll teach to 'em to watch what they say. Don't they know that hearing is the last sense to leave? Besides, they SHOULD page him. I TOLD them I wanted to stay awake and so I am. Besides, he IS late and I'm..... sleepy. I want to talk to my doctor. Suddenly, Mark is at my head. I hear his voice. I open my eyes and turn towards him. He seems slightly annoyed that I'm awake, yes, definitely more annoyed than surprised. I think to myself that there's no surprise here, you just don't know me that well. Yet. My stubborn goes a long way, doc. I ask my questions, he says all the right things but I can tell I'm being patronized. Prolly because he's pissed that he's late and I'm not asleep. The room gets dark. Anesthesia wins.

Sorry about your downer days. Hmmm. Sounds like you married my husband. Is he handsome, about 6'1 and balding? Smiles with his eyes, laughs from his belly and listens from his heart? Seriously, there are tough times and then there are.... the anniversaries. Ouch. Your husband is a wise man. There is nothing wrong with preparing for the worst. I was married once before, divorced and have never, ever been without Plan B ever since. I take a certain amount of comfort in that, even though at times it has been a real hindrance. Plan for the worst. Pray for the best. And never, ever lose hope. Planning for the worst is only being smart. So have a house on one floor with wider doorways, so what. So structure your finances differently.....in the long term - and the short term - you'll be glad you did. Planning a long term life around a disease isn't the same as losing hope. We were in the store yesterday when I realized we were holding hands, walking what was (in the past) our usual pace...only I was in a motorized wheelchair. Last year, I set speed records in our dragcar. This year, I hoped to finally get my NHRA competition license. Instead, I got a house that is easily compatible with ADA guidelines. This afternoon I came home from the track with my husband, as a matter of fact. We had taken a wheelchair and there I was. People looked at me like a boat anchor, not like the woman who was featured in High Performance Pontiac magazine. Yeah, it hurt. But only a little - because I only let it hurt a little. Because I have hope. I know who I am. I know my accomplishments. I refuse to judge myself by the world's standards. I daily pursue my personal best. I know my life would send most of those macho men into a depressed crying tizzy and they'd never pick up another wrench, let alone be seen in a "diminished" position in public, let alone traditional "guy turf" like a dragrace. I know I have a strong husband. I know who my friends are. And when I really feel down, I know where to go. Just like you. You are strong. You have hope. You know who you are. You know your accomplishments. You daily pursue your personal best. You have a strong husband. You know who your friends are. And if this disease means giving up certain things, I will focus on what I have, just like you. Only I will get the biggest, fastest, *****-red metal flake motorized wheelchair and put nitrous on it. And when the day comes that I can no longer get out of bed, I will ask the motorized bed salesperson what sex positions the bed is most famous for. I will wink and smile and ask for a bed trapeze...... I will take my stool sample for gluten sensitivity and accidentally send it to Social Security instead of the lab. Social Security can then document my confused mental state and expedite my claim. Bring it on!!!!!!! But of course, this isn't my anniversary of my illness, either. I hope you'll listen to me then and try to make me laugh. Because as long as we can laugh, we can hope. A long hug for you, my friend.

Ohhhhh-KAY. I guess we know who hasn't been keeping up with his professional journals. Hah! Ladies! The Blue Light is Flashing in the Dumb Department....We are running a special on physicians who would rather spout off than be accurate. Our featured items are brought to you by Emily's Gastroenterologist, top producer of inadequate and opinionated information..... Gee, I just realized that most of you are too young to remember the blue light flashing in Kmart. Tough. Google it if you want to know more Feel better, Em? I'd love to see a separate thread with the DO's and DON'Ts, forbidden sins and hidden dangers of the gluten free diet. What's casein, anyway?

This is good stuff, especially if you like science. It's really good stuff if you don't like science and can't sleep at night. Note that this research is barely a year old. Information in boldface was inserted by me, otherwise this is the full, unedited transcript. Read it slowly, think about it, come back to it later and re-read. There's a lot of implications here. I forwarded this to my co-workers in GI Unit and am awaiting their critical review. Early Diagnosis Of Gluten Sensitivity: Before the Villi are Gone Transcript of a talk given by Kenneth Fine, M.D. to the Greater Louisville Celiac Sprue Support Group, June 2003. "Gluten sensitivity" is the process by which the immune system reacts to gluten contained in wheat, bar ley, rye, and oats. The reaction begins in the intestine because that is where the inciting antigen, gluten, is present (from food). When this immunologic reaction damages the finger-like surface projections, the villi, in the small intestine (a process called villous atrophy), it is called celiac disease (or sometimes celiac sprue or gluten-sensitive enteropathy). The clinical focus of gluten-induced disease has always been on the intestine because that is the only way the syndrome was recognized before screening tests were developed. The intestinal syndrome consists mainly of diarrhea, gas, bloating, nausea, vomiting, fat in the stool, nutrient malabsorption, and even constipation. Although the small intestine is always the portal of the immune response to dietary gluten, it is not always affected in a way that results in villous atrophy. Even though recent research has shown that celiac disease is much more common than previously suspected, affecting 1 in 100-200 Americans and Europeans, past and emerging evidence indicates that it accounts for only a small portion of the broader gluten sensitive clinical spectrum (often referred to as the "Tip of the Gluten Sensitive Iceberg").With better understanding of how gluten triggers immune and autoimmune reactions in the body under the control of various genes, and advancing techniques of detecting these reactions, it is becoming apparent that the majority of the gluten sensitive population (the submerged ?mass of the iceberg?) do not manifest villous atrophy in its classic, complete form and therefore do not have celiac disease. In these non-celiac, gluten sensitive individuals, the brunt of the immune reaction either affects the function of the intestine, causing symptoms without structural damage, affects other tissues of the body (and virtually all tissues have been affected in different individuals), or both. This is important because the commonly used diagnostic tests of clinically important gluten sensitivity (blood tests for certain antibodies and intestinal biopsies) are only positive when villous atrophy of the small intestine is present. But if only a small minority of gluten sensitive individuals actually develop celiac disease, the majority, who have not yet or may never develop villous atrophy, with or without symptoms, can remain undiagnosed and untreated for years. This can result in significant immune and nutritional consequences, many of which are irreversible even after treatment with a gluten-free diet. Some of these disorders include loss of hormone secretion by glands (hypothyroidism, diabetes, pancreatic insufficiency, etc), osteoporosis, short stature, cognitive impairment, and other inflammatory bowel, liver, and skin diseases, among others. Only with early diagnosis, can these problems be prevented or reversed. I am here to report on a scientific paradigm shift regarding early diagnosis of gluten sensitivity based on about 30 years of medical research by myself and others. My message is that earlier and more inclusive diagnosis of gluten sensitivity than has been allowed by blood tests and intestinal biopsies must be developed to prevent the nutritional and immune consequences of long-standing gluten sensitivity. Imagine going to a cardiologist because your blood pressure is high or you're having chest pain, and the doctor says he is going to do a biopsy of your heart to see what is wrong. If it "looks" O.K., you are told you have no problem and no treatment is prescribed because you have not yet had a heart attack showing on the biopsy. You would not think very highly of the doctor utilizing this approach because, after all, isn't it damage to the heart that you would want to prevent? But for the intestine and gluten sensitivity, current practice embraces this fallacious idea that until an intestinal biopsy shows structural damage, no diagnosis or therapeutic intervention is offered. This has to change now because with newly developed diagnostic tests, we can diagnose the problem before the end stage tissue damage has occurred, that is "before the villi are gone," with the idea of preventing all the nutritional and immune consequences that go with it. There are many misconceptions regarding the clinical presentation of gluten sensitivity or celiac disease: For example, that you cannot be gluten sensitive if you have not lost weight, are obese, have no intestinal symptoms, or are an adult or elderly. However, the most widely held and clinically troublesome misconception is that a negative screening blood test, or one only showing antigliadin antibodies (without the autoimmune antiendomysial or antitissue transglutaminase antibody) rules out any problem caused by gluten at that time or permanently. For some reason, the high "specificity" of these blood tests has been tightly embraced. Specificity means if the test is positive, you surely have the disease being tested for with little chance that the positive is a "false positive." But sadly, a negative test does not mean you do not have the problem. This is the biggest pitfall of all because the only thing a very specific test, like blood testing for celiac disease, can do is "rule in" the disease; it can not "rule it out." If you've got very far advanced and/or long-standing celiac disease, it is likely that the test will be positive. However, several studies have now revealed that it is only those with significant villous atrophy of the small intestine who regularly show a positive antiendomysial or antitissue transglutaminase antibody, the specific tests relied upon most heavily for diagnosis of gluten-induced disease. When there was only partial villous atrophy, only 30% had a positive test. More disturbing perhaps, were the results with respect to screening first degree relatives of celiacs with blood tests. Despite some biopsy-proven early inflammatory changes in the small intestine but without villi damage, all blood tests were negative. For some reason, it's been perfectly acceptable to celiac diagnosticians that a patient must have far advanced intestinal gluten sensitivity, i.e., villous atrophy, to be diagnosed and a candidate for treatment with a gluten-free diet. That means from the specific testing standpoint, there's never (or rarely) a false positive. But what about the larger majority of gluten-affected people who do not presently have or may never get this end stage, villous atrophic presentation? They are out of luck as far as blood testing is concerned. So the fact is that we have erroneously relied on specificity (always picks up gluten sensitivity after it has caused villous atrophy, never having a false positive) instead of sensitivity (doesn't miss gluten sensitive people even though they might be picked up early, even before full-blown celiac disease develops). Would a test relying on specificity rather than sensitivity be good enough for you, or your children? Consider the risk of not getting an early diagnosis versus going on a gluten free diet a few months or years prematurely. While I do not recommend anyone to have a biopsy (especially children) for diagnosis because of the shortcomings and invasive nature of this technique, I particularly do not want someone to have a biopsy showing villous atrophy, since by that time, associated bone, brain, growth, and/or gland problems are all but guaranteed. And here is another related problem: you have a positive blood test, but, if a small bowel biopsy comes back normal or nearly normal, you are told that the blood test must have been a 'false positive' and that gluten is not your problem. Would you believe that, especially in light of the fact that most such people would have gotten the blood test in the first place because of a specific symptom or problem? Let's hope not. All that means (positive blood test, negative biopsy) is that the gluten sensitivity (evidenced by antibodies to gliadin in the blood) has not yet damaged your intestines severely. Evidence of this comes from a study that I performed. We tested 227 normal volunteers with blood tests for celiac disease. Twenty-five of these people (11%) had either antigliadin IgG or IgA in their blood versus only one (0.4%) that had antiendomysial, antitissue transglutaminase, and antigliadin IgA in the blood. So for every one person in a population that has the antibodies that have 100% specificity for celiac disease of the intestine (antiendomysial and antitissue transglutaminase), there are 24 that have antibodies to gliadin that may not have celiac disease. So what is going on with the 11% with antigliadin antibodies in blood? Are these false positives (rhetorically)? You're telling me that there is a disease called celiac disease and it is associated with antibodies to gliadin in the blood and sometimes it damages the intestine? But people with antigliadin antibody in their blood but no other antibodies do not have a clinically significant immunologic reaction to gluten? Do you see the problem? How can 11% be false positives? What about the 89% with none of these antibodies? You cannot equate having no antibodies at all (a negative test) with having antigliadin antibodies alone. If you have antibodies to gliadin, something is going on here. Where there's smoke there's fire. The purpose of this study was to test this hypothesis: that an antigliadin antibody alone does indicate the presence of an immune reaction to gluten that may be clinically important. Using tests for intestinal malabsorption and abnormal permeability (i.e., tests of small bowel function, unlike a biopsy which says nothing about function), we found that 45% of people with only an antigliadin IgG or IgA antibody in blood (without either antiendomysial or antitissue transglutaminase antibody) already had measurable intestinal dysfunction, compared to only 5% of people with no antibodies to gliadin in their blood. When we did biopsies of these people's intestines, none had villous atrophy with only a few showing some early inflammation. Thus, having an antigliadin antibody in your blood does mean something: that there is nearly a 1 in 2 chance that functional intestinal damage is already present even though it may not be visible structurally at the resolution attained by a light microscope assessment of a biopsy. As mentioned at the outset, not all gluten sensitive individuals develop villous atrophy. Evidence for this has been around for a long time. In 1980, a medical publication titled "Gluten-Sensitive Diarrhea" reported that 8 people with chronic diarrhea, sometimes for as long as 20 years, that resolved completely when treated with a gluten-free diet, had mild small bowel inflammation but no villous atrophy. In 1996 in a paper called 'Gluten Sensitivity with Mild Enteropathy,' ten patients, who were thought to have celiac disease because of a positive antiendomysial antibody blood test, had small bowel biopsies showing no villous atrophy. But amazingly, these biopsies were shown to react to gluten when put in a Petri dish, proving the tissue immunologically reacted to gluten (which was likely anyway from their positive blood tests). Two other reports from Europe published in 2001 showed gluten sensitivity without villous atrophy (and hence without celiac disease). In one of these studies, 30% of patients with abdominal symptoms suggestive of irritable bowel syndrome having the celiac-like HLA-DQ2 gene but no antibodies to gliadin in their blood, had these antibodies detected in intestinal fluid (obtained by placing a tube down into the small intestine). Thus, in these people with intestinal symptoms, but normal blood tests and biopsies, the antigliadin antibodies were only inside the intestine (where they belong if you consider that the immune stimulating gluten also is inside the intestine), not in the blood. This is the theme we have followed in my research, as we are about to see. More proof that patients in these studies were gluten sensitivity came from the fact that they all got better on a gluten-free diet, and developed recurrent symptoms when "challenged" with gluten. Although the gluten-sensitive patients in these studies did not have the villous atrophy that would yield a diagnosis of celiac disease, small bowel biopsies in many of them showed some, albeit minimal, inflammatory abnormalities. Yet, when a symptomatic patient in clinical practice is biopsied and found to have only minimal abnormalities on small bowel biopsy, clinicians do not put any stock in the possibility of their having gluten sensitivity. As much as I would like to take credit for the concept, you can see from these studies that I did not invent the idea that not all gluten sensitive patients have villous atrophy. It has been around for at least 23 years, and reported from different parts of the world. For many years there has also been proof that the intestine is not the only tissue targeted by the immune reaction to gluten. The prime example of this a disease called dermatitis herpetiformis where the gluten sensitivity manifests primarily in skin, with only mild or no intestinal involvement. Now from more recent research it seems that the almost endless number of autoimmune diseases of various tissues of the body also may have the immune response to dietary gluten and its consequent autoimmune reaction to tissue transglutaminase as the main immunologic cause. A study from Italy showed that the longer gluten sensitive people eat gluten, the more likely they are to develop autoimmune diseases. They found that in childhood celiacs, the prevalence of autoimmune disease rose from a baseline of 5% at age 2 to almost 35% by age 20. This is a big deal if you think how much more complicated one's life is being gluten sensitive AND having an autoimmune disease. So preventing autoimmune disease is one very important reason why early diagnosis and treatment of gluten sensitivity is important. Early diagnosis before celiac disease develops also holds the potential of preventing other clinical problems such as malnutrition, osteoporosis, infertility, neurologic and psychiatric disorders, neurotube defects (like spina bifida) in your children, and various forms of gastrointestinal cancer. Another reason for early diagnosis and treatment is very straightforward and that is because many gluten sensitive individuals, even if they have not yet developed celiac disease (villous atrophy), have symptoms that abate when gluten is removed from their diet. Furthermore, from a study done in Finland, a gluten sensitive individual who reports no symptoms at the time of diagnosis can improve both psychological and physical well-being after treatment for one year with a gluten-free diet. Despite the common sense and research evidence that early diagnosis of gluten sensitivity offers many health advantages over a diagnostic scheme that can only detect the minority and end-stage patients, until now, the limitation was still in the tests being employed. As mentioned above, the main test used for primary (before symptoms develop) and secondary (after symptoms develop) screening for celiac disease, blood tests for antigliadin and antiendomysial/antitissue transglutaminase antibodies, are only routinely positive after damage to intestinal villi is extensive. As shown in a 1990 publication, this is because unless you have full blown, untreated celiac disease, the IgA antibodies to gliadin are only INSIDE the intestine not in the blood. Measuring antigliadin antibody in blood and intestinal fluid (obtained by the laborious technique of having research subjects swallow a long tube that migrates into the upper small intestine), researchers found that in untreated celiacs, antigliadin antibody was present in the blood and inside the intestine, whereas after villous atrophy healed following a year on a gluten-free diet, the antigliadin antibody was no longer in the blood but was still measurable inside the intestine in those with ongoing mild inflammation. An important conclusion can be drawn from these results, as these researchers and myself have done: gluten sensitive individuals who do not have villous atrophy (the mass of the iceberg), will only have evidence of their immunologic reaction to gluten by a test that assesses for antigliadin IgA antibodies where that foodstuff is located, inside the intestinal tract, not the blood. This makes sense anyway, because the immune system of the intestine, when fighting an antigen or infection inside the intestine, wages the fight right in that location in an attempt to neutralize the invading antigen, thereby preventing its penetration into the body. It does this with T cells on the surface of the epithelium, the intraepithelial lymphocytes, and with secretory IgA made with a special component called secretory piece that allows its secretion into the intestine. The excellent English researchers that made the discovery that they could detect the immunologic reaction to gluten inside the intestine before it was evident on blood tests or biopsies knew it was a breakthrough, testing it many times over in different ways, and further extending the clinical spectrum of gluten-induced disease to include a phase before the villi are damaged, so-called "latent celiac sprue". Furthermore, they developed this technique of assessing the intestinal contents for antigliadin antibodies into what they viewed as a "noninvasive screening test for early or latent celiac sprue" (what others and I would simply call "gluten sensitivity"). However, this was not exactly noninvasive, nor was it simple. It still required the patient to swallow a tube, followed by a complete lavage of all their gastrointestinal contents with many gallons of nonabsorbable fluid that had to be passed by rectum and collected into a large vat to be analyzed for the presence of antigliadin antibodies. While this was indeed a conceptual breakthrough, it practically went unnoticed by the medical community because the cumbersome procedure of washing out the intestine just could not be done in a normal clinical setting. To this day, I am not sure how many people even know that it was not me, but rather this well known celiac research group, led by the late Dr. Anne Ferguson, who pioneered the assessment of the intestinal contents as a viable and more sensitive source of testing material for the early reactions of the immune system to gluten. What we did in my research, is to refine and simplify the method of collecting and measuring these intestinal IgA antigliadin antibodies before they can be detected in blood. That is, instead of washing out the antibodies from the intestine, we allow them to be excreted naturally in the stool (feces). And so with that idea, and our ability to measure these antibodies in stool, as others before us had done for fecal IgE antibodies directed to food antigens, our new gluten (and other food) sensitivity stool testing method was born. It was actually my research of microscopic colitis that led me to discover that stool analysis was the best way of assessing for gluten sensitivity before celiac disease develops. Microscopic colitis is a very common chronic diarrheal syndrome, accounting for 10% of all causes of chronic diarrhea in all patients, and is the most common cause of ongoing chronic diarrhea in a treated celiac, affecting 4% of all celiac patients. However, from my published research, despite the presence of the celiac HLA-DQ2 gene in 64% of patients with microscopic colitis, very few get positive blood tests or biopsies consistent with celiac disease. Yet, small bowel biopsies revealed some degree of inflammation sometimes with mild villous blunting in 70%. According to the facts and previously discussed shortcomings of celiac blood tests, antibodies to gliadin are unlikely to be detected in the blood in these patients because they lack villous atrophy. So negative blood tests for antigliadin antibodies per se did not, in my mind, rule out the possibility that these patients with microscopic colitis, a disease that under the microscope looks like celiac disease but of the colon, and that affects many celiac patients, were not gluten sensitive themselves. But as Dr. Ferguson's research revealed, these antibodies might be detectable inside the intestine. And since we surely were not going to perform that cumbersome intestinal lavage test in my patients, we decided to see if we could find these antibodies in the stool as a reflection of what is coming through the intestine. Here's the first set of data that we found showing the superior sensitivity of stool testing versus blood tests for antigliadin IgA antibodies. In untreated celiac disease patients, we found a 100% positivity in the stool versus only 76% in blood. In hundreds of microscopic colitis patients since tested, only 9% have antigliadin antibody in blood but 76% have it in stool. And the same is true of 79% of family members of patients with celiac disease; 77% of patients with any autoimmune disease; 57% of people with irritable bowel syndrome-like abdominal symptoms; and 50% of people with chronic diarrhea of unknown origin, all of whom have only about a 10-12% positivity rate for blood tests (like normal volunteers). Thus, when you go to the source of production of these antibodies for testing, the intestine, the percentage of any population at a higher than normal genetic and/or clinical risk of gluten sensitivity showing a positive antigliadin stool test is 5 to 7.5 times higher than would be detected using blood tests. In normal people without specific symptoms or syndromes, the stool test is just under 3 times more likely to be positive than blood (29% vs. 11%, respectively). That?s a lot more people reacting to gluten than 1 in 150 who have celiac disease. 29% of the normal population of this country, almost all of whom eat gluten, showing an intestinal immunologic reaction to the most immune-stimulating of dietary proteins really is not so high or far fetched a percentage, especially in light of the facts that 11% of them display this reaction in blood, and 42% carry the HLA-DQ2 or DQ8 celiac genes. Why is this so important? Because some people with microscopic colitis never get better when they're treated, and most autoimmune syndrome syndromes only progress with time, requiring harsh and sometimes dangerous immunosuppressive drugs just for disease control. If the immune reaction to gluten is in any way at the cause of these diseases as research suggests, and if we had at our disposal a sensitive test that can diagnose this gluten sensitivity without having to wait for the intestinal villi to be damaged, then treatment with a gluten free diet might allow the affected tissues to return to normal or at least, prevent progression. We now have that test in fecal antigliadin antibody. Just a few weeks ago we completed the first follow-up phase of our study: what happens when a gluten sensitive person without villous atrophy goes on a gluten-free diet for one or two years. While I am still gathering and analyzing the data, most of the subjects reported a much improved clinical status (utilizing an objective measure of symptoms and well being). Not everybody gets well, because sadly not everyone stays on a gluten-free diet (as they sometimes admit on the surveys). Some people have the misconception that if they don't have celiac disease, but "I just have gluten sensitivity" then maybe they do not have to be strict with their gluten elimination from the diet. I do not think that is the case. Although a gluten free diet is like anything: less gluten is not as damaging as more gluten, but certainly no gluten is optimal if a gluten sensitive person desires optimal health. Of the first 25 people with refractory or relapsing microscopic colitis treated with a gluten-free diet, 19 resolved diarrhea completely, and another 5 were notably improved. Thus, a gluten-free diet helped these patients with a chronic immune disease of a tissue other than small bowel (in this case the colon), who have been shown to be gluten sensitive by a positive stool test in my lab. The same may be true of patients with chronic autoimmune diseases of any other tissue, but who do not have full-blown celiac disease. Gluten-free dietary treatment, sometimes combined with dairy-free diet as well, has been shown to help diabetes, psoriasis, inflammatory bowel disease, eczema, autism, and others. Thus, my approach, and I believe the most sensitive and most complete approach, for screening for early diagnosis and preventive diagnosis for clinically important gluten sensitivity is a stool test for antigliadin and antitissue transglutaminase IgA antibodies (IgG is not detectable in the intestine) and a malabsorption test. The malabsorption test we developed is special, because you no longer have to collect your stool for three days; we can find the same information with just one stool specimen. Combining this stool testing with HLA gene testing, which we do with a cotton-tipped swab rubbed inside the mouth, is the best diagnostic approach available. Who should be screened for gluten sensitivity? Certainly family members of celiacs or gluten sensitive people being at the highest genetic risk. For the most part, all of the following patient groups have been shown to be at higher risk than normal to be gluten sensitive: chronic diarrhea; microscopic colitis; dermatitis herpetiformis; diabetes mellitus; any autoimmune syndrome (of which there is an almost end-less number like rheumatoid arthritis, multiple sclerosis, lupus, dermatomyositis, psoriasis, thyroiditis, alopecia areata, hepatitis, etc.); Hepatitis C; asthma; chronic liver disease; osteoporosis; iron deficiency anemia; short stature in children; Down's syndrome; female infertility; peripheral neuropathy, seizures, and other neurologic syndromes; depression and other psychiatric syndromes; irritable bowel syndrome; Crohn's Disease; and people with severe gastroesophageal reflux (GERD). Autism and possibly the attention deficit disorders are emerging as syndromes that may improve with a gluten- free (and additionally casein-free) diet. A diagnosed celiac might be interested in our testing to know (after some treatment period no shorter than a year) that there is no on-going damage from malabsorption, for which we have a test. If a celiac is having ongoing symptoms or other problems, a follow-up test should be done just to be sure there's no hidden gluten in the diet, or something else that could be present, like pancreatic enzyme deficiency which often accompanies celiac disease, especially in its early stages of treatment. Historically, with respects to diagnostic methods for celiac disease, from 100 A.D., when celiac disease was first described as an emaciating, incapacitating, intestinal symptom-causing syndrome, to 1950, we had just one diagnostic test: clinical observation for development of the end stage of the disease. Then in 1940 to 1960, when the discovery of gluten as the cause of celiac disease occurred, the best diagnostic test was removing gluten from the diet watching for clinical improvement. It was during this period that the 72-hour fecal fat and D-xylose absorption tests were developed as measures of gluten-induced intestinal dysfunction/damage. In the mid- to late1950?s, various intestinal biopsy methods were pioneered and utilized, showing total villous atrophy as the diagnostic hallmark of celiac disease. You've heard the intestinal biopsy called the 'gold standard'; well as you can see, it is a 50 year-old test, and thus, the "old" standard. It was not until the 1970s and 80s (and improved upon in the 1990s) that blood tests for antigliadin and antiendomysial/antitissue transglutaminase were developed, but again these tests like all methods before, can reliably reveal only the 'heart attack' equivalent of the intestinal celiac syndrome: significant villous atrophy, bad celiac disease. We are in a new century, a new millennium, and I have built upon what my research predecessors have started; mostly on the work of researchers who laboriously put down tubes and sucked out intestinal fluid for testing for antigliadin antibody when it was not present in blood. We now know that a stool test for antigliadin antibody is just as good and much simpler. The wide-reaching ramifications of knowing that so many more people and patients are gluten sensitive than have ever been previously known has led me to assume a professional life of medical public service. To do so, I started a 501?3 not-for-profit institute called the Intestinal Health Institute, have brought these new diagnostic tests to the public on the internet (at http://www.enterolab.com), and volunteer my time helping people with health problems by email and by lecturing. With greater awareness and education of both the public and medical community that early diagnosis of gluten sensitivity can be achieved before the villi are gone, more of the gluten sensitive iceberg will be diagnosed and treated early, leading to far fewer gluten-related symptoms and diseases than has ever been experienced before.

SINUS NODE ABLATION!!! YOUCH!!!! OK, you just became my hero......... Has anyone written you up in journal? Seriously. Nuking the sinus node is one way to prove that there is also a bigtime neuro link in all this mess. Now you're pioneering one of the new meds for us. I'm sure you'd rather be pioneering a space walk, or underwater soil sampling or even walking a thousand miles behind a covered wagon. After all, those things have a predetermined end point. I had an accidental ablation of my AV node almost 2 years ago......oops. Well, I guess that's one way to prove POTS without a tilt table test, isn't it? I get along well with my pacemaker and John Dostalek at Medtronic is my main man. I call him a couple of times a year, usually out of the blue "John, can I run a chain saw? John, can I weld?" He always explains life to me......chainsaw days are long gone, though.

After reading about the many folks here who have celiac, I decided to do a "little light reading" on the 'net. Came across this statistic after about three hours and it was a genuine eye opener: This is taken from the University of Chicago Celiac Disease Program Fact Sheet: "The incidence of autoimmune diseases in the general US population is 3.5%. In a 1999 study, Ventura, et.al. found that those diagnosed with celiac disease between the ages of 2-4 years of age had a 10.5% chance of developing an autoimmune disorder. Duration of exposure to gluten and risk for autoimmune disorders in patients with celiac disease. SIGEP Study Group for Autoimmune Disorders in Celiac Disease. Additional findings are outlined below: Age of Diagnosis/ Chance of developing autoimmune condition Age 2-4........ 10.5% Age 4-12....... 16.7% Age 12-20..... 27% over 20........ 34% rest of the article is here: http://brain.hastypastry.net/forums/showth...read.php?t=2228 and then there's: http://www.allergyimmunolinx.com/thearts.c...pecid=21&ok=yes and more stuff in the bibliography: http://brain.hastypastry.net/forums/showth...read.php?t=2132 I need to get a new inkjet cartridge and start printing this stuff! Gawd, I love science!

rgt9191, I understand where you are at.......my best friend from college has turned out to be a HUGE disappointment. I am godmother to her daughter and she is getting married this month. I look at it this way: life happens. POTS is only the context (for you.) For me, it is an egomaniac who is all about herself, her degrees, her third husband (who greatly helped her advance her career). A real friend is one who carries your Foley bag and pushes your IV pole. I am blessed with one of those too. Funny, she has just as many degrees as the egomaniac..... and got them after she was disabled. Two Masters and a Doctorate. All things come round in their time. Be thankful you've outgrown her and you can now know who your true friends are. Lip service from a poser isn't worth squat.......or as our parent's used to say: talk is cheap and actions speak louder than words. God bless.

Yep. This site is way too soft and fuzzy for most guys. Shoot, half the time it's way too soft and fuzzy for me. Mighty Mouse is always editing my posts and telling me to clean up my language, lol. And I don't confront 99% of the stuff I would like to simply because the 'net is a "flat" forum for communication. Very hard to tell what is really going on, so I prefer to give the benefit of the doubt. AT ANY RATE...... In the interest of our men I hereby offer our race shop, located at our home, on the first Friday night of the month. Men can be men, turn wrenches, get dirty, cuss, cut steel with fire, grunt, scratch, and ***** about their wives for awhile. Eventually I'll go out with a round of barley soda, help separate the pepper from the ****** and release my inner ironworker. No need to thank me. Hey, it's what I do. Besides, my husband is well grounded in manliness, science, sex and being the right partner for a POTSy, asthmatic, autoimmune-funky wife. Just don't frick up his tools or tell him that our GTO "looks just like the General Lee" or ask if we run a big block in our drag car. Tom's anal about his tools. The General Lee was a Dodge Charger. There is no such thing as a big block Pontiac.

Interesting topic. Interesting to see how many of you have celiac sprue, even though it is fairly uncommon. Just another correlation to wonder about. I've got the following "other stuff:" Asthma Complete Heart Block/pacemaker dependent Dysautonomia Chronic ulcerative colitis GERD Migraines Psoriasis? Eczema? some weird thing I never bothered to go to the doc about.... Arthritis (workup in progress) Bilateral plantar fascitis (currently with cast on one leg, immobilizer on the other) Neuroma in R. foot Expressive aphasia Cholecystitis w/ gall bladder out this spring Metrorrhagia w/ hysterectomy slated for Dec. 7th (Day That Will Live In Infamy) History of viral meningitis History of beryllium exposure And I've blown out a disc but had it repaired (L5-S1) and am doing well I do believe that all of this is autoimmune in nature and somewhere there is a big ol'diagnosis just waiting to happen. It just hasn't revealed itself yet. But I'm doing fine. Never, NEVER confuse the physical ills with free will and one's ability to make choices about one's life!!!!! For the record: Crutches suck. They do a job, but they suck. If all goes well, I'll get the cast off six days before my hyst. Woo hoo! Freedom is mine!!!

No worries. That's why God put hydrochloric acid in our stomachs. He's always one step ahead of us.

Zofran rocks. Works like a charm. I've given thousands of IV doses......but never to pregnant patients. Jessica, I don't mean to be harsh and cynical, but I am going to be blunt because you've got a lot at stake here. I've been doing science and nursing longer than you've been on Earth.....so take it for what it's worth. After a lot of experience, I tend to distill things down. Besides, I've been sick enough a time or two myself. Helps when I'm trying to separate the pepper from the fly specks. So here goes: 1. You got pregnant and you had to know it was going to be tuff, rocky road. 2. Nobody ever died of nausea....but a whole lot of thalidimide babies were born while doctors tried to make Mommy more comfortable. 3. Be safe. Suck it up. You and your baby are a whole lot better off doing IV fluids while waiting for the next few months to pass. BTW: What did the doc say about weekly IV's anyway? Here's the science behind my blunt opinion: The first trimester is the most sensitive time for drug induced fetal malformation. Zofran is a Pregnancy Category B drug, meaning: Animal studies haven't shown a risk to the fetus, but controlled studies in pregnant women have not been done. - OR - Animal studies have shown adverse effect on the fetus, but adequate studies in pregnant women haven't shown a risk. I have a minor problem with this whole concept. (If I were staking my unborn child's health on it it would be a MAJOR problem), i.e.: What's an adequate study if it's not a controlled study? QUESTION: If animal studies show a risk......is there any researcher in his right mind who's going to give that drug to pregnant women? No. Besides, his lawyers won't let him. So how reliable are other animal studies that show no risk.....but still researchers won't do a controlled study in humans? ANSWER: Doctors prescribe and women roll the dice. Bad results may be reported to the drug company later. Or maybe not. There are other defects that have been notorious over the years that WERE NOT apparent at birth. Infertility and female cancers in women whose mothers took hormones during pregnancy come to mind. Shoot, how many of us wonder about the factors that brought us to where we are now? Breast fed or bottle fed? Viral infections? Other contributory diseases? Bottom line: you have a chance here to eliminate one more risk for your baby by NOT taking any additional drugs. Choice is yours.

Trick or Treat will never be quite the same for you after the nasty tricks you had this Halloween! I wouldn't necessarily blame the Phenergan for the SVT. Mostly likely dehydration as it is the mother of all kinds of compounded problems. Adenosine is powerful joo joo. Guaranteed to make you feel like crap because it WILL drop your heart rate, for a little while at least. It's used to diagnose the origin of SVT by slowing the heart rate down RIGHT NOW. See if you can get a PICC line and at least a liter of fluid IV per day. Preventing dehydration should help prevent the SVT, might help the nausea. But controlling your heart rate is by far and away the most important thing, for it goes hand-in-hand with oxygenation. Don't be afraid to be VERY ASSERTIVE in asking for IV fluids. Ask for the moon, settle for the stars. As for the nausea, try the natural stuff like Gena said. Sucking on hard candy may also help. I'm not sure how willing I'd be to go for Zofran or its European counterparts...... Take comfort from the fact that nobody ever died from nausea, unless their family killed them because they were too crabby to live with!

Dear Amy, My heart goes out to your husband and you. One of the benefits of this forum is that I do not know you and so can be a little more objective than if we were acquainted. A couple of things come to mind: 1. Your husband is talking to you. Maybe not in the way you would want, but at least he's talking and has told you of his feelings, some of which are very deep. He's probably been carrying this around for awhile and it came out the only way he knew... "unloading" It's a start. It's important. Validate his feelings... because this isn't fair to him. Tell him point blank that this isn't fair to him; isn't fair to you or your child either. And it's not your fault that life isn't fair. 2. Sometimes you gotta get to the bottom of the hill before you can climb back up. Maybe that's where he's at. Hopefully the discussion of his feelings in #1 will help open up that communication. 3. Sex.......... hoo boy. On top of everything else, there's the male ego and it's unrelenting sex drive. I guess I've made my peace with that one and found a variety of non-cardiac challenging positions. I had a great sex life when I was healthier. Now, I need to concentrate on doing what I can for my husband to the extent that I am able. Marriage isn't only marrying the right person, but being the right partner. If I'm well enough to do the dishes, I'm well enough for sex. 4. Counseling. The best analogy I ever heard for this one came from a counselor we saw for infertility therapy some years ago: "You two dance beautifully, but you need to learn a few new steps." Since going to a bona fide counselor seems out of the realm of possibility for now, consider your other resources. Is there anyone at your church or circle of friends/family who have dealt with a serious, ongoing illness? Especially if it entails the man really stepping up to be a man . If there's a peer or someone else he can talk to.....that'd be great. Sometimes they just need to talk to other guys. Role models like this don't grow on trees. 5. Mutual Support. Have him go with you to doctor's appointments where you are likely to hear "big news" together. He may hear something you do not, you can bounce ideas off each other and lean on one another right from the get go. Cry in his arms after the doc leaves the room instead of alone in your car. Works for me. 6. Faith. The idea that any of us has control over our lives is a comforting illusion we tell ourselves so we can get out of bed in the morning and drive on the freeway. We have no control. Whether you call it God, Jesus, Jehovah or whatever, knowing that you are not in control is a big step. Having faith in something other than our own abilities is paramount to surviving and triumphing over this......even if neither you or I "get well". We can still triumph. We triumph every day that we live life to its fullest, without regret, with love and concern for others. You have much the same fighting spirit I have. No doubt your husband found you a strong, capable woman. Now that is changing before his eyes and he is helpless to stop it. Helpless men = frustrated, unhappy men. Just don't be so strong and spirited that you try and handle this alone. Grieve his losses with him. I've even apologized to my husband for things I would like to do and once used to do. (Apology, blame, fault and responsibility are four distinct, diffferent things and one does not mean any of the others are present.) So I say "I'm sorry I can't be the lover I used to." His reply "It's not your fault." Every couple that stands at the alter is promised rough times.......how we handle them is what matters. The part about "let no man put asunder" isn't about divorce. It's about how we treat one another as husband and wife. You'll get there. Just keeping working together. Prayers for both of you. Either of you could call or email: Amy Richcreek 419-841-7989 or tajrichcreek@cs.com

First thought: Gee whiz, you guys are so nice. Second thought: There is no sound byte that explains POTS. So..... I don't explain myself to anyone, unless they've known me for awhile. Even then, I usually just start with a brief answer "My heart beats too fast for its own good." All monosyllables, easy for the public to repeat and they think they understand. Close friends, people I've known awhile get a more detailed description. If they're medical folks/friends, I do go into a lot more detail. I often just say "dysautonomia.... where the autonomic nervous system doesn't work like it should. The autonomic nervous system is that part of us that controls breathing, heart rate and blood pressure. Now that's not so important, is it?" Let them draw their own conclusions whether breathing, heart rate and blood pressure are important. If they really care about me, they'll ask for more details. I don't give a **** if mere acquaintances understand it or not. A lot of people ask out of idle curiosity, not caring. And I'm not here to satisfy anyone's curiosity or help them pass their time of day. I'm not a science project. And the B**** of the Day Award goes to - envelope please - Herdswoman! "I'd like to thank my husband for his unflinching support and bad influence. And I am not A B****, I am THE B**** and that's MRS. B**** to you." I'm really not as bad as it sounds. All of these things, said with an even tone of voice and a smile really let most people think they've learned something! And the above quote is actually something I told an alcoholic druggy patient once, after he made a horribly explicity, sexually perverse suggestion to one of my aides and I spoke to him about it. He called me b****. So I set him straight. Ah, nursing! A job like no other!!!! I shoulda been an ironworker.

Good for you, Danelle! Way to go on the phone calls! Like others, I re-read your first post. Finding a good doc who can help you is important. Get a referral to Dr. Grubb. I just got my appointment and it is booked for JUNE, 2005. I s'pose he's booked in to July by now......any rate, I was surprised to learn that my cardiologist had to actually make the appointment. They don't take new patients who just call. At least I've got it on the books.....and as part of my appeal. I think it looks good for an appeal. They will know I take it seriously enough to wait nine months to get in to see the pre-eminent specialist in the world. Thanks also to Dancing Light and the tip about county assistance. I'll probably be checking that out in November.

1. You did good by posting here. Quit crying, take a deep breath. Time to build a support network and start thinking like a warrior....which is what you are going to be in order to slay the red-tape monster. 2. Realize that dang near everyone gets denied the first time, especially if we are young. (I had a cousin my age, born profoundly retarded: total care, diapers, never walked or fed herself. From time to time my aunt and uncle had to take her in to various offices to see if she still met the rules for benefits, for crying out loud. What a ^%$#@ dog and pony show they put them through!!!!! Vultures!!!!!!!) That's the mentality we are all dealing with here, so get ready! 3. Hire a lawyer. They get paid when they win (take percentage of what you get from the point at which you were disabled to the point at which you won your case.) 4. APPEAL, by all means. Realize that this is a process, not an endpoint and will probably take at least a year. 5. Check with your HR department where you were an RN. Most of us are offered disability insurance. Are there some benefits you don't know about? Can you sign up for disability during open enrollment - even if you are on leave right now? 6. Tap into your private disability policy, if you have one or can get one. Have any surgery you may have been putting off (cholecystectomy, anyone?) Pencil pushers understand that and you will get paid for a few weeks, anyway. 7. Batten down the hatches and get ready for a long, stormy course. Discuss this with your husband and figure out a financial strategy so that your family will come through this relatively unscathed. Could mean very tough choices: sell your house, buy one with a smaller mortgage, sell any cars that are payments and drive something that is within your means. I'd take ten year old Honda if it meant getting out from under a car payment at this point. Be proactive: SELL BEFORE THE BANK TAKES IT...BEFORE YOU ARE FORCED TO USE CREDIT CARDS....BEFORE YOU GET INTO A CREDIT TRAP.....SELL EARLY and you will be in the best long term position. 8- An unexpected resource just came along for me: my disability policy (UNUM) has a legal team on retainer that will file appeals for me and COST ME NOTHING, not even a percentage. My claims rep likened them to the US Marshals: they always get their man. 9- Tap into your MD resources. Get letters and records. As an RN, you know how to play the documentation game.......and that's all this is. Send your MD's letters specifically asking them to advocate on your behalf. REMEMBER You are NOT HELPLESS. You are NOT AT THE MERCY OF SSDI. You are SMART, RESOURCEFUL AND YOU WILL WIN. You are a WARRIOR WHEN IT COMES TO PROTECTING YOUR FAMILY. Our strategy for surviving the filing and appeal process: We sold our big house, downsized considerably. We focused on our daughter so she wouldn't feel the sting of moving as much......simple things, like letting her have lime green walls in her bedroom. Totally funky, didn't cost squat. Shopped the rich section of town for garage sales and got her a new wardrobe for starting middle school. I just sold a whole set of my collectibles (cranberry glass). My racecar is for sale, as is the drivetrain. I have a list of things I'd sell next, if I need to: my horse, my Lenox china, other investment quality pieces of antique glass- heirloom or not, I do what it takes to protect my family. Early on, I sold a chunk of my retirement to pay off a few things when this all started- about $5K worth. Paid off my pickup truck and my horse (and he's my sanity/therapy/exercise right now.) None of this was easy, but compared to living on credit cards, running up debt, or losing our house and filing bankruptcy, it's nothing. Until something permanent goes through we are strictly CASH AND CARRY in our house. NO EXCEPTIONS. None of this is your fault. Your husband or children could have gotten sick just as easy. Would you blame them? Of course not. So don't blame yourself. By all means, don't let anyone else blame you either. This is not easy, but people with POTS can do hard things.

Splenda is fairly new on the market. Were you "foggy" before you started using it?

Geneva, thanks for the reply. I wasn't sure what kind of reception the article would get from the board members. Women who aren't into cars - let alone race - generally are a lot different from women who do. But from my perspective, it usually doesn't matter. A person can be just as passionate about needlework as they can about going 125 mph in less than 1400 feet. BTW: the prelim. question is whether the event in my head - if there was one - was related to meningitis that I had some nine years ago. I'd love to go on Oprah and talk about all of this and bring POTS a little more exposure. This past summer I thought I would get my NHRA competition license. Instead I got a house that is easily adaptable to ADA guidelines. No wheelchair on the horizon yet, except for this **** heel pain. Been known to grab an electric scooter at the grocery store on bad days. Today I decided to forget wearing the immobilizer. I have things to do through the end of this week pretty heavy. Can't afford to get seasick while walking. S'pose I should call the podiatrist in the morning. Maybe I have a poor attitude, but if life is going to suck, I may as well be as productive as I can for as long as I can. I heard some words of advice once that I didn't fully understand at the time. A woman said "I finally realized that what is, IS." The context of her comment was talking about faithfulness and security in one's marriage. But I think it could apply to a lot of other things as well. If I had a stroke as a result of meningitis some years back and fought hard to regain a productive, full life..........then that is what IS. If the residual of that alleged stroke is just now affecting more of my life, nine years later, then that's what IS. If I feel good today but felt like crap yesterday, then that's what IS. No point in worrying about what might or might not be. OR - If your husband is a world famous sex symbol, a real man's man, every lady's fantasy and you'll hear rumors about infidelity. Yet if this man comes home at night and is a loving, respectful husband, then that is what IS. No sense in worrying about what might be when you should be focusing on what IS. The woman who gave the advice was JoAnne Woodward, on the subject of her husband, Paul Newman.

Had a doctor visit today, MD is sending me to a neurologist for a full work up. Thinks maybe I had a stroke or some infarct or another near the pineal gland. Gee, I'm glad that article came around when it did (April of this year). I don't think I'll be racing much anymore. My right lower leg is now in an immobilizer. **** thing makes me dizzy and nauseous to walk with it much.....it makes my right leg longer than my left and I wobble. *****. None of my shoes - or my daughter's shoes - have the right amount of heel or platform sole. My race car is for sale. My brand new race motor is also for sale. I was once asked to drive for a nationally known manufacturer of racing motors. Offered me a three year deal. Like dates for the dance, it's nice to be asked - even if you turn them down. Guess those days are gone.....at least for now.

Some of the guys I know in the racing community decided to post this about me. It's pretty nice........I just wish I could have explained POTS better in the space I had: http://forums.performanceyears.com/eve/ubb...511&m=652106558 Larry Davis, who affectionately says I'm "da man" is a former Navy Seal. Pretty high praise, huh? Scroll down and you'll see the photo. I'm the one behind the white car. I rarely drive the racecar now, so it was an especially sweet way for me to bow out. Here's the link to the whole article: http://highperformancepontiac.com/events/0.../0412pon_shoot/ At the risk of being totally shameless, HPP is available at WalMart. I think I posted this before, but it's a little something I wrote about the experience: For The Times They Are A Changin'? August 9, 2004 Amy Richcreek I was fortunate enough to be asked to drive for an article in High Performance Pontiac magazine this past March. They needed six women from across this part of the United States and I was thrilled! Their first comprehensive article on women in racing, it was a big honor to be asked. Despite my recent heart and lung illnesses and upcoming surgery, there was no way I was going to miss out. I called the surgeon and postponed my gallbladder surgery. April 29th dawned bright, cool and clear - perfect weather for making maximum horsepower. High Performance Pontiac had rented all of Norwalk Raceway Park for the photoshoot and racing. Norwalk, as always, would have the track in tip-top shape for this event. The last time I had been at Norwalk before this was the Nationals, seven months prior in August. I was dismayed to find how quickly I now became fatigued, how short of breath I was when attempting to walk what had been my regular long-distance pace. I slowed down considerably, took it as sign of the times and an omen of things to come. If I became this tired, this slow, in the April cool; how would I ever handle the Nationals in the August heat and humidity? I figured I'd better be getting Plan B together as Plan A was too pokey to be acceptable on those long, long stretches of concrete and asphalt. Fast forward to August at the Norwalk Nationals: My cousins let me borrow their John Deere 4 x 6 Gator for a pit vehicle. Let me tell you, you get respect driving a monster like that. Both our cars were broken but we wouldn't miss the Nationals for anything. Our friend Paul Spotts let me pit crew for him with his vintage front engine dragster. The Gator was my perfect disguise - all I did was make sure we had everything loaded in the cargo bay then sit down and drive. "Everything" for driving a front engine dragster at those speeds is kinda like putting on the armor of God: helmet, fire suit, fire gloves and shoes, arm restraints, neck roll, toolbox, tire pressure gauge/air tank box, battery/starter box and ice cold Powerade. I'd tow us up to the staging lanes, walk about 15 feet, help Paul with his suit and safety equipment, make sure he was in the shade as much as possible, then walk back another 15 feet and sit down in the Gator. I'd do other easy, menial tasks, like handing tools off, helping with the jackstands and floor jack, dumping in the oil when the oil needed changing, picking up the skinny front tires when they needed changing. Between that and chasing the dragster down the return road and towing it back to the pits I really looked like I was doing something. Hah! No one had any idea that I would have trouble walking and shortness of breath at the track. And I am still in the middle of the sport that I love. Not that I complain of want; for I have learned, in whatever state I am, to be content. I know how to be abased, and I know how to abound; in any and all circumstances I have learned the secret of facing plenty and hunger, abundance and want. I can do all things in him who strengthens me. Philippians 4:11-13 Paul's dragster - just so you can see what I was working with: http://www.spottsperformance.com/images5/D...ster%202003.jpg

Congrats, Jessica! You scare me to pieces!!!! Like Michigan Jan said, people with POTS can do hard things! You can do it and you will triumph! As for morning sickness with a toddler, hmm.... maybe you can get him a potty chair and he can pretend to throw up with Mommy. No? Explain to him that throwing up comes first, just like when he's sick. Give him a good example of making it to the bathroom and not on the hallway rug or bedroom carpeting. Atta girl!!!! Parenting by example!

Can't believe it? Pshaw. There are no nerve endings in the esophagus. Once you get the scope past the gag reflex in the back of the throat, it's a wide-open highway to the stomach. God put it there and it's perfect: no incisions, nothing at all in the way, zoom. The gag reflex is best numbed by topical anesthetics. The IV sedation is very helpful in relieving anxiety and the sensation of pressure in the back of the throat. Remember, I've only seen/assisted with this test done about a zillion times.....and I know my doc very, very well. He was actually more nervous than I. He came in the room and said "OK, Amy, we're going to practice before we do this." I said "Practice? *** is that? What do you think we've been doing together for the last four years!!!!" But he wanted to verbally walk through it with me on the table.....whatever. Seemed to make him calmer. It's nothing for a good doc to do the entire upper exam in 3 minutes, 5 minutes tops with a cooperative patient. (from the time the scope goes in to the time it comes out completely.) With meds, I would have to have an entire day off work, (no driving, no decision making) which would have meant 12 hours of vacation or sick time shot. The upper endo will 99.9% of the time be an absolute breeze. You will be lying on your left side with your head on a soft pillow and tilted slightly downwards, as if you were nodding your head. The most frequent side effect afterwards is a slight sore throat that disappears within 24 hours. As for colonoscopies: It can go easy, or it can go hard, most of it depends on the patient. Probably 80% of the people need sedation to help get them to that relaxed place and can't wait to go (as I used to explain to them, you're not completely in LaLaLand, but you are definitely riding the bus!) Then there are a very few others who can do relaxation well without drugs. Then there is the real minority who are a true PITA, who are so sure that they are more unique than anything else we've ever seen, who swear to G-d that they were promised general anesthesia, who won't go with the flow, hear but will not accept anything we say. They come in the door with their agenda and are a giant pain until they leave. Thankfully, they're very few people who are cannot, WILL NOT let go and let the drugs do their job. They've made up their minds that this will be a bad experience and so it is. Dancing Light, I think the choice of words the doc used was unfortunate for you. He meant for it to be something that was a statement of confidence. I mean, I wouldn't WANT a doc who would lose sleep over doing my test! By the time a doc has five years in practice, he's seen stuff you wouldn't even dream of....multiply that a hundred times if he's practicing in an inner city teaching hospital, which is where I worked. Gals and guys, I've worked with heart surgeons who describe what they do as "garden variety" stuff - but never in front of a patient. We're in the OR, swapping jokes and recipies. Believe me, it's not what you see on TV, with the nurse wiping the doctor's laboring brow and statements like "We're losing him!" Oh, was BS THAT is! We do our jobs like we do the dishes at home. It's no big deal. ***BUT*** a significant part of our job is to make the patient comfortable, ease anxiety because it IS a VERY BIG DEAL to the patient. I'm so glad I dont' do it anymore!!!!!!!!!!!!!! 20 years was enough!!!!!!!!!!!!!!!

Geneva......who is this guy and will you share him with all of us? Wow! My last job in the hospital was in the endoscopy suite. Spent 4 years there. My advice is to go ahead and get it done in early or mid-November. That way it's over with and not hanging over you. There's not much to it. I've had an upper endoscopy done with only relaxation techniques.....but remember, I knew the doc on the other end of the scope very, very well and trusted him implicity. It was not bad, I just made sure I gargled a lot of Lidocaine very slowly and numbed up the back of my throat first. Just a little burping, a numb throat for 30 minutes but no lasting after effects. (I'm stubborn. I just didn't want to burn 12 hours of sick time for a 3 minute exam. So I used my lunch hour. Went from admitting patients to hopping on a stretcher, took off my shoes and 15 minutes later we were done. Put my shoes on and went back to work.) The colonoscopy was where I refuse to be brave or stubborn. DRUGS, GIVE ME DRUGS!!! Same doc as for my upper endo, bless him, his nickname is Snowman. :cool: Versed is widely tolerated by darn near everybody. Stuff flows like water in the endo suite. We give it to the oldest and the youngest and everyone in between. Very few true allergic reactions. Reverses easily if someone is oversensitive to it. Has a marvelous amnesia effect - most folks don't remember a thing. I don't know what the Pres. had, but it may have been one of the drugs that requires an anesthesiologist to administer (we used to do our own conscious sedation.) I gotta think that the POTUS had an anesthesiologist instead of just a GI guy with and RN. Bottom line: The prep is awful, but the test is much easier than the prep. Just park yourself in the bathroom for the prep with a lot of water. If you can't, absolutely cannot get the prep down without vomiting it back up, call the doc and ask him what Plan B is. Remember that good patient prep is essential for a successful exam. Oh, say thanks to your doc for the NuLytley. I wouldn't wish Golytely on my worst enemy. Hideous, awful stuff by the gallon and to this day I cannot stand packaged lemonade or salty drinks. Are you having a general anesthetic or conscious sedation?