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lthomas521

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Everything posted by lthomas521

  1. Here's a good explanation: http://www.pediatricnetwork.org/medical/CF...ary/nmh-cfs.htm
  2. Poor swallowing is called dysphagia. Dysphasia is loss of or deficiency in the power to use or understand language as a result of injury to or disease of the brain. If you use the wrong word, the doctors will get confused.
  3. Could be a motility problem in the esophagus, or a dryness problem, like with Sjogren's syndrome.
  4. Heart failure doesn't mean that you die. It doesn't mean that the heart stops beating. It merely means that the heart "fails" to pump adequately to meet the body's needs. The researchers at UMDNJ were looking for a "marker," some test that would be positive for disabled people and negative for nondisabled people, so that it would be easier to decide who should be able to go on disability. What they found was that the people who were disabled from CFIDS (chronic fatigue syndrome) had low cardiac output. The more disabled they were, the worse their cardiac output was. It was a very tight correlation, and the probability of results that dramatic due to random chance in their sample were remote. In retrospect, this explained why people with CFIDS were more disabled than anyone other than people who have cardiomyopathy (heart muscle disease). Because in essence they do have a form of cardiomyopathy. But instead of a pumping defect, they have a problem with the heart relaxing enough between beats to refill. But the cardiac output problem was pretty much the same. Those of us with low pulse pressure and low blood volume are in a similar situation, which explains why we can be so severely disabled. The other thing that was interesting was that CFIDS was a "dynamic" problem. If people with CFIDS try to exercise, they might be fine while they are exerting themselves, but they "crash" afterwards. Cheney calls this the "push-crash" phenomenon. I'm sure lots of us know what that is like!
  5. By "prominent subset," I think that they mean people who are disabled by CFIDS. They are in heart failure because their heart isn't circulating blood sufficiently. It wasn't detected because the problem is lack of filling between beats (which is similar to our problem), and because they don't die.
  6. CFIDS, for those of you who are wondering, is chronic fatigue syndrome (chronic fatigue and immune dysfunction syndrome), also known as CFS. It's due to a peculiar form of heart failure. Who knew?
  7. Welcome home! Sorry to hear that you were so sick! I hope they figured out why you got so sick!
  8. Here's a lot of info on Sj?gren's syndrome http://www.sjogrens.org/ Ask you doctors if you can use licorice tea. If you can use licorice, be sure to load up on salt and water (to help it work) and eat lots of potassium rich foods (to prevent hypokalemia). You can get licorice teabags or licorice extract from the health food store. Just make sure that it does have glycyrrhizin in it. There is a product called DGL (deglycyrrhizinated licorice) that has the active ingredient removed from it. Licorice does more or less the same thing as Florinef. Florinef pretends to be aldosterone. Licorice deactivates an enzyme in your kidneys, allowing your normal cortisol to act in the kidney as if it were aldosterone. Aldosterone is an adrenal hormone that enables your kidneys to keep salt in your body. The lack of aldosterone causes Addison's disease, which is what JFK had.
  9. For about the first 20 years of the CFIDS epidemic, we were told that CFIDS was a "functional somatic syndrome" that was probably really some sort of mental disorder. The challenge for physicians was supposedly to get these people to stop thinking about their health and stop going to doctors. Then the research from Peckerman and coworkers showed that CFIDS is really a form of heart failure. The severe disability these people exhibit results from the fact that they have serious circulatory insufficiency, although the precise problem with the heart wasn't easy to see, until cardiologists learned how to detect diastolic dysfunction. No, CFIDS isn't "all in the patient's mind." No, they can't overcome it through cognitive behavioral therapy or graded exercise. In fact, it's obnoxious to try to persuade people with that degree of disability that they are not really ill, and exercise can be extremely harmful for people with CFIDS, because they are already in borderline organ failure. http://www.cfids-cab.org/MESA/Lerner.html Dr. Paul Cheney was one of the few doctors who said all along that CFIDS patients were really sick. I saw the 3-hour video with Dr. Cheney talking about the heart failure in CFIDS. Astonishing. He makes it all make sense. And a lot of what he has to say is probably useful for POTS patients, as well. I don't know whether anyone with POTS has the kind of diastolic dysfunction he talks about, although I have orthostatic diastolic hypertension, but many of us have such low blood volume that we are in a state of circulatory insufficiency regardless. Cheney describes the havoc that circulatory insufficiency can wreak on your body, especially on your gut.
  10. If you are taking something like Florinef, which can deplete your potassium, they might worry that your potassium values might dip below the bottom of the normal range on a bad day. Eating some bananas or drinking some orange juice or V8 juice should do the trick.
  11. It seemed to be beneficial as an adjunct to conventional treatment in patients with chronic heart failure. Here is an article that discusses a meta-analysis of randomized placebo-controlled trials: http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum Here's an article that reviews the likely adverse events: http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum Note that it warns: "the unsupervised use of this drug can be associated with problems, especially if given with concomitant medications." Just from a superficial search, it seems to me that it might hold some promise for people whose problem results from weakness of the heart muscle. I don't know if it would do any good for someone whose problem is in the autonomic nervous system.
  12. Be careful about how you share information. The less you say, the better. If you are worried that people won't know what to do in an emergency, get a Medic-Alert bracelet. The ambulance people will find it. http://www.medicalert.com/home/Homegradient.aspx There are only really two reasons for telling anyong anything. One is to prevent people from jumping to the conclusion that you have a substance abuse disorder. (I look hung over on a bad day, and it is worse in the morning.) The other is if you need some special accommodation, as in the Americans with Disabilities Act.
  13. It sounds like polycystic ovary syndrome, from your description. Some researchers believe that polycystic ovary syndrome ultimately results from your body's insensitivity to insulin. Metformin makes your body use insulin better, which is why metformin is given to women with PCOS. Metformin can reverse the signs of PCOS and even help women who have infertility problems due to PCOS become pregnant. However, I don't know whether metformin works any better than a good diet and exercise program to achieve the same effects. Have you seen a nutritionist? Here's a link to that article about the use of a vegan diet for people with type 2 diabetes (a more extreme form of insulin insensitivity). Maybe something along these lines would be beneficial. http://care.diabetesjournals.org/cgi/conte...tract/29/8/1777
  14. Have you had a blood volume determination and a cardiac output test? http://www.cfids.org/archives/2003rr/2003-rr2-article01.asp
  15. I wouldn't have to think long and hard about this one. With "friends" like her, who needs enemies? The world revolves around her. She wants a court of admirers paying tribute to her, but she doesn't care about the personal lives of the admirers. Their purpose is to magnify her glory. Stop feeding that ego. It isn't good for either of you. That being said, I'm sorry that that heartless woman has hurt you. You sound like a decent person, so you must be deeply hurt. Unfortunately, that is the downside of being a decent person in a world peppered with sociopaths. One of the best sources I've seen for understanding and dealing with this problem is a book entitled Emotional Vampires. http://www.albernstein.com/id55.htm By not sacrificing everything (your health and your credit rating) to serve as her lady in waiting, you are depriving her of "narcissistic goods." How dare you? :-) I'll tell you what a real friend is like. One of my friends took a day off of work to go with me to an appointment with an autonomic specialist. She's pleased when I can do things with her and understanding when I can't.
  16. Your description sounds like "sleep jerks," or myoclonus, which can happen in completely healthy people when they are falling asleep. It is apparently more common and more serious in people with disorders of the "ion channels," which are the gateways through which charged particles like sodium and potassium ions enter and leave the cell and in people with electrolyte imbalances. http://hkpp.org/physicians/myoclonus_rep.html
  17. Here's an article on mastocytosis: http://www.emedicine.com/derm/topic258.htm It could be "adrenergic urticaria." If you have POTS, it probably is adrenergic urticaria: http://www.ncbi.nlm.nih.gov/entrez/query.f...p;dopt=Abstract Is there a white halo around each lesion? Are you taking a beta blocker? Supposedly, a beta blocker might help. When was the last time you had a complete physical? Urticaria can be a sign of leukemia or lymphoma.
  18. It might be easier on you to do some self-directed study and take advanced placement exams to get college credits. http://www.collegeboard.com/student/testing/ap/about.html Also, you might want to look into an online type of school to get at least some credits. The important thing is to pace yourself. Taking it a little at a time and getting good grades is better than overdoing it and having a meltdown: relapse and bad academic record.
  19. I don't have high blood pressure, but I think it is important to know what your blood volume is. In the article in this link, Dr. Bell describes a patient whose blood pressure was borderline high while lying down and sky-high while standing, even though his blood volume was only 60% of normal. http://www.pediatricnetwork.org/medical/CF...ry/oi-intro.htm
  20. Ernie: We've missed you! I hope you feel better soon. Did they ever test you for the autosomal dominant hyperinsulinemic hyperglycemia that occurs in French Canadians?
  21. My GP wanted to send me to a cardiologist. I told her it was pointless. I've seen three already, and they were all useless and completely unsympathetic.
  22. My friend's golden retriever got cancer. Was it because that dog was inflexible and had other sorts of dysfunctional thought patterns? Maybe the cancer patients only seem inflexible because they don't endorse the PT's stupid theory.
  23. Years ago, there was a mattress commercial in which people were lying on the sidewalk, dragging themselves along by the scruffs of their own necks. I thought, "that's just what I feel like!"
  24. Have you been tested for celiac disease? http://www.celiac.org/ Anyone who has had her gallbladder out at such a young age should be presumed to have celiac disease until proven otherwise, in my opinion. The iron-deficiency anemia is also suggestive, as well as your just being generally sick all over. Lots of people with POTS-like problems have celiac disease. Keep eating gluten-containing products until after you are tested, otherwise you'll get a false-negative result. If you get a positive test result for celiac disease, then you will have to stop eating products made from wheat and similar grains. If you get a positive test, then other people in your family should be tested as well, especially if they have mysterious illnesses.
  25. If you go into a neurologist or opthalmologist with pupils of uneven size, they will definitely take you seriously. Can you open the lid fully on the eye with the small pupil? Can you sweat on that side of the face? If not, you have Horner syndrome. Horner syndrome is a syndrome because it is a set of symptoms and signs that tend to occur together. It can result from all sorts of different problems, including migraine. http://www.emedicine.com/med/topic1029.htm If your pupils are too big, you will get blurry vision because depth of field gets smaller when the aperture gets larger. Same as in a camera. The bigger the opening for the light to enter, the less is in focus.
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