lthomas521

I stand by my earlier statement. The MMR vaccine has never contained thiomersal. http://www.fda.gov/cber/vaccine/thimerosal.htm#t1 If someone told you that it ever did, they are either ill-informed or lying. I never said that I wasn't concerned about mercury per se. The kind of accident that Old Lady Lighthead described is a serious emergency and I think that the response that she described, R2D2 and all, was entirely appropriate. Mercury vapor is extremely poisonous, and mercury spilled on a carpet is a recipe for a toxicological disaster. I had already heard about the day care in the abandoned thermometer factory, and I was appalled by it. I support efforts to eliminate the use of mercury-containing thermometers and other devices, which would have prevented both problems. I can hardly be accused of failing to care properly about the environment, especially since I squander my limited time and energy working on a congressional campaign for someone who is trying valiantly to defeat an entrenched incumbent with a bad environmental record. I'm also working for candidates on the county level, who (if we can get them elected) can work on diverting toxics from landfills. I also use public transit instead of driving (even though that means I have to do some extra walking, which I can ill afford, considering that I have POTS); I don't adorn myself with precious metals (gold mining is a major cause of mercury pollution); I don't have air conditioning at home, even though it would be better for my health if I did, considering that I have POTS. You get the picture. However, I base health decisions on toxicology. And the most important rule in toxicology is that "the dose makes the poison." I haven't seen any evidence that the exposure to mercury from having amalgam fillings is likely to cause any problems. On the other hand, I know that many dentists would benefit financially from doing unnecessary dental work. So I suspect that the whole "have all your fillings removed" movement is a ripoff. I will continue to suspect that until I see some sort of reasonable evidence to the contrary. Personally, I probably wouldn't have had any amalgam in my mouth whatsoever if we hadn't moved from a fluoridated community to a nonfluoridated community when I was a child. Suddenly, whamo--cavities from heck. Whenever anyone I know with children moves to a new community, I remind them to ask about whether the water is fluoridated and, if it isn't, to ask the doctor or dentist for fluoride-containing vitamins for their children. I also suggest that they get enamel bonding on the vulnerable surfaces of the children's teeth. The younger people in the family have never had a single cavity, because these precautions were taken. So if they get some bizarre illness like POTS, for whatever reason, they will never fall prey to some quack who wants to make a quick buck by doing unnecessary dental work on them. And they will never wonder whether the metal in their mouths is making them sick. It would be easy enough to design a case-control study about amalgam fillings and POTS. Just recruit a bunch of people with a reliable POTS diagnosis, get a bunch of controls matched for age and gender, etc., and then count the fillings in both groups.

It is absolutely impossible for a case of autism to have resulted from thiomersal in the MMR vaccine. The MMR vaccine has never contained thiomersal. Besides, measles itself can kill or cause mental retardation or blindness. We're better off with the vaccine, at least until the disease is completely eradicated, like smallpox. I have a mouthful of mercury-amalgam fillings, but that's because when I was in my cavity-prone years, the powers that be were trying to protect us against communism by opposing fluoridation of the water. I kid you not. I'm not worried about mercury poisoning, because I don't eat tuna or swordfish. I get my omega-3's from flaxseed.

Lesions that look like stretch marks (but really aren't) can be a sign of tick-borne illness, such as bartonellosis or Lyme disease. Have you been tested for those? They can cause problems with your nervous system.

Hm. Could it interfere? Let us know if they figure out the copper problem. It's an interesting one. Is anyone else in your family sick? Metabolic errors tend to run in families. But if it is recessive, you might be the only one you know of who has it.

The news about this study has been buoying my spirits since November, when Ramakentesh first mentioned it. I ran it past a friend of mine, a psychiatrist who works in antidepressant research and who had known me when I was very very sick from POTS. I asked him what would happen to someone who had no norepinephrine reuptake. He said, "How could someone live like that?!?" I said, "Not well, evidently." He said, "Gee, it would be as if you had taken a massive overdose of antidepressant." I said, "Well, that would account for my habitual cheerfulness and my high threshold of pain, wouldn't it." I told him that I was looking forward to the results being published in NEJM. He asked how that publication would help me. I told him that I would buy a copy of the issue, take it to my doctors' appointments with me, and the next time one of them told me that I was "depressed" or that it was "all in my mind" or that I was "just looking for attention," I'd roll the journal up into a baton and use it to swat the ignoramus on the snout, because that is evidently the only way that people like that are capable of learning from published peer-reviewed medical literature. Just kidding. In reality, I'll beg them to read it, try to reason with them as if they were rational adults, and then grind my teeth in frustration.

Here's a link to an abstract about bad effects from vitamin deficiencies in women who couldn't keep any food down because of "morning sickness" (hyperemesis gravidarum, which means extreme vomiting in pregnant women). http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum In the meantime, can you get any liquid vitamins from the pharmacy? Maybe at least some of that will stay down. Best of luck!

The single most important thing I have done for my POTS is take large daily doses of thiamine. I went from contemplating applying for disability to being nearly normal within a few days of starting thiamine supplementation. As one of my neighbors put it, "You went from blue to pink!" I've since added other B vitamins and magnesium glycinate to my daily regimen. I had been taking magnesium oxide, but a friend of mine told me that her doctor recommended magnesium glycinate to her because of her migraines. I forgot to take my magnesium glycinate on Friday night and woke up on Saturday morning with the first migraine I'd had in months. The things that have helped me are all things that are recommended for people who have mitochondrial problems, which would explain a lot. Your mitochondria are responsible for using oxygen to release the energy from sugars and fats into a form that your cells can use. If they aren't working properly, your cells have to rely on anaerobic (without oxygen) methods of extracting energy from fuels. These are inefficient and lead to the production of lactic acid, which is what makes your muscles sore after strenuous exercise. Right before I started with the thiamine, I had an exercise stress test, which showed that I had an "appallingly low" anaerobic threshold, which the exercise physiologist attributed to lack of exercise. I think she had it backward. I had exercise intolerance because of my low anaerobic threshold, which was remedied within a few days of starting thiamine supplementation. If I stop taking the thiamine, as I did to humor one of my doctors, I got very sick again within 2 days. I'm a medical copyeditor, and I copyedited several nutrition books about 20 years ago. Back then, the conventional wisdom was that unless you had classic signs of a deficiency disease (e.g., pellagra or beriberi), then there was no evidence that vitamin supplements above the recommended daily allowances would do you a lick of good. So it's likely that most doctors will dismiss any discussion of vitamins as "health faddism." I would be willing to go off my thiamine, and everything else, and go through all sorts of nasty tests, if some scientist would be willing to make use of the resulting data.

Are you taking a zinc supplement? That could interfere with copper. http://www.diagnose-me.com/cond/C542179.html

If you are not getting your B2 because you are throwing it up, you are probably not getting thiamine (vitamin B1), either. If you are not getting thiamine, you can end up with serious permanent brain damage (Korsakoff's). http://healthgate.partners.org/browsing/br...39;s%20Syndrome Tell your doctor that you aren't absorbing your vitamin B2, as you can tell by your glossitis and angular stomatitis and sore throat (classic classic signs of vitamin B2 deficiency!!!). Tell the doctor that this means that you probably aren't absorbing enough thiamine, either, and that this puts you at risk for serious permanent brain damage. So the logical thing would be to give you injections of B complex until you stop with the vomiting and can absorb what you take by mouth. Why on earth are they giving you a time-release formulation of vitamins if you are vomiting??? If they gave you a liquid form, maybe at least some of it would stay down. If you can't keep the time-release formulation down, can you try just the regular kind? Maybe then you'll absorb at least some of it. Ask the pharmacist, or send someone if you are too sick to go yourself. Why are you vomiting?

First things first. The whole picture (especially the "burnt tongue") sounds suspiciously like vitamin B2 deficiency. I'll bet that the "cold sore" is in the crack at the corner of the mouth. If the problem is B2 deficiency, then it will clear up in a few days if the person starts taking a vitamin supplement. Like magic. Jess, you mentioned "GI stuff." If you have some GI problems, you might not be absorbing vitamins properly. If the problem is B2 deficiency and the GP missed it, you may want to get a new GP--especially if the deficiency is secondary (i.e., due to malabsorption). For someone with severe riboflavin deficiency, the Merck Manual says to give 10 to 30 mg/day by mouth in divided doses until a response is seen, then 2 to 4 mg/day until recovery. You can also get vitamin B2 shots from a doctor if your GI problem is severe. http://www.merck.com/mrkshared/CVMHighLigh...k.com#hl_anchor

Are you taking any morphine-type pain relievers? They can cause spasms in the sphincter of Oddi.

Sounds like a riboflavin deficiency (vitamin B2) http://www.healthatoz.com/healthatoz/Atoz/..._deficiency.jsp Are you taking vitamins?

A new friend of mine told me that she has had migraines for years, and that her doctor told her to take magnesium glycinate, which seemed to make them a lot less frequent. I went to the health food store and got some and have been taking it religiously. No migraine in weeks!!!! Plus, I've been feeling very good in general. I've even started cooking again. I make my lunch every morning and dinner almost every night. I've been cooking totally vegan. (I take a massive iron supplement along with a vitamin C pill at night, and I'm getting plenty of supplemental B12.) An old friend of mine told me yesterday that I look better than she's ever seen me. So, why do I feel better? Is it because (a) it's summer, and I always feel somewhat better in summer; ( I've been taking magnesium glycinate instead of magnesium oxide; © I've been drinking that homemade electrolyte replacement--1/2 t salt, 1/2 t baking soda, 1/2 t potassium chloride, 1/2 sugar in a liter of water, with licorice extract added to medicinal purposes--twice a day; or (d) I've been doing the cooking, so my blood sugar level is extremely stable and I'm chock-full of natural antioxidants?

Sounds like an ANS thing. What else does your daughter have? The ANS-related breathing problems that I have heard about occur when the person is sleeping, but the person is fine when he or she is awake. Does she have any trouble sleeping?

Mine was getting really really bad when I was 40. I'm doing reasonably well now, at 44, only because I manage it very aggressively.

If you are using conservative measures (e.g., eating huge amounts of salt) to try to control your POTS, you may want to discontinue them a day or so before having your TTT, if the purpose is to document your POTS. You may wish to document how sick you are, not how well you are managing your illness.

Is it a blood volume problem? You stop drinking while you are asleep, but your kidneys keep reducing your blood volume. Maybe if you set the alarm clock for about a half-hour before you normally wake up all tachy and drink something and eat something salty, you might be able to prevent the problem. The other possibility that comes to mind is hypoglycemia. Are you having any blood sugar regulation problems? If your blood sugar level drops while you sleep, it could trigger autonomic nervous system problems. The blood sugar level might not be absolutely low, just low relative to your regular readings. I read that people with tightly controlled diabetes could prevent nighttime hypoglycemic episodes by mixing some cornstarch into a glass of water and drinking it right before bed. (Don't cook the mixture before drinking it!) The cornstarch acts as a reservoir of slow-release carbs. http://www2.owen.vanderbilt.edu/2006/DBart...bar/study1.html

A study in New York? Where? New York Medical Center? Mt. Sinai? What's the purpose of the study?

It's important to keep up with the salt loading while you are taking Florinef. You might also consider adding extra potassium and magnesium to your regimen, because Florinef tends to deplete you of these. Your doctor and pharmacist can advise you on potassium and magnesium supplementation.

I tried Wellbutrin, and it had exactly zero effect on me. But I had no anxiety complaints, just fatigue and hypovolemia-type symptoms and signs.

They ask you to collect your urine in a gallon jug. Ask for a spare. You may need it. When I had mine, they measured the amount of aldosterone metabolites, by mass spectrometry. Mine were 8 times the upper limit of normal. Guess that pretty much ruled out Addison's disease!

Yes POTS can give you debilitating fatigue for days and days and days. What has your psychologist been smoking? I know what she hasn't been reading. There was a recent article in the Mayo Clinic Proceedings that said that POTS was as disabling as chronic obstructive pulmonary disease or congestive heart failure. http://www.ncbi.nlm.nih.gov/entrez/query.f...2&dopt=Abstract I have POTS that has been severely physically debilitating, but I have never had any anxiety complaints. I once was given a prescription for some anxiety medication to use in case some other medication we were trying were to make my all jumpy. I filled the prescription for the tranquilizer but never opened the bottle. Never even thought about it. Never felt I needed it. When I told a friend of mine that some doctors thought I had "histrionic personality disorder" because I was seeking medical attention (they thought I was just seeking attention), she said, "That's ridiculous. You are the most emotionally stable person I know." I don't know what kind of "work" you can do on anxiety if you have anxiety because of a norepinephrine problem. If you are all jittery about driving while you have insufficient circulation in your brain, that is a sign of sanity. Is there any way that you can reduce or eliminate your driving? Are you employed? Do you have to drive to get to work? Ask your human resources department if there is someone you can car pool with. Don't tell them about the POTS unless you want to. You just want to fight greenhouse warming. If you just have to drive to do errands, maybe you can work out some sort of deal with a friend or neighbor, e.g., you watch the neighbor's kids after school and the neighbor takes you to the store. Be creative. The main "work" you have to do probably involves boosting your blood volume, or correcting whatever else it is that is causing your POTS. My guess--and it is just a guess--is that POTS really is due to a lack of norepinephrine transporter, and that some people have this problem primarily in the central nervous system (and have panic disorder or other anxiety problems but no POTS), and other people only have it mainly in the peripheral nervous system (and have POTS but no anxiety), and still others have it in both places (and have POTS and anxiety). We know that some people whose NET gene is switched off have panic disorder, some have POTS, and some have both. Fair warning: there are lots of psychologists who like to pretend that problems that are obviously the result of a diagnosable physical problem are actually psychosomatic. I guess that subconsciously they think that they won't get paid unless they can convince you that your problems are psychological. Ironically, they could provide valuable service if they would simply read up on our physical problem and help us deal with the impact it has on our lives. But that would take intelligence and compassion, and some education. I won't waste my time and money on any professional that doesn't already know more than I do about my problem.

0.3 mg/day of fludrocortisone is a high dosage. Fludrocortisone was marketed to be a replacement for aldosterone, which is made by the adrenal glands. People with Addison's disease (i.e., they have no adrenal function at all) usually get dosages of 0.1 to 0.2 mg/day. Fludrocortisone is primarily a mineralocorticoid (i.e., it makes your kidneys retain salt in the body) but it does have some glucocorticoid effects. Glucocorticoids encourage your body to make glucose, especially from amino acids and lipids (i.e., from proteins and fats). Glucocorticoids also encourage the tissues to release the amino acids and lipids to make them available for conversion to glucose. So a high dosage of fludrocortisone could theoretically raise your blood sugar levels, especially if you already have impaired glucose tolerance. Have you asked the doctor whether you can use licorice instead of Florinef? Licorice root contains a chemical (glycyrrhizin) that blocks an enzyme in the kidney. The enzyme normally prevents cortisol from having mineralocorticoid effects in the kidney. So licorice could allow your natural cortisol to act like Florinef. I don't know how it would affect your blood sugar.

Be careful about interpreting any claims about a surgeon's percentage of success with an unusual procedure. Sometimes the data are simply made up. If they are for real, then they should be published in a journal somewhere. You have to jump through all sorts of hoops if you want to test a new drug. But the rules are much more lax for surgical procedures. Surgeons can do whatever they think is appropriate for a patient, and they can collect data on a series of patients, without reviewing a protocol with anyone ahead of time. If things don't go well, the surgeon can be sued for malpractice or lose his or her medical license. Also, who is scoring the results? The surgeon himself or herself? There is considerable chance for bias in assessment. Even if the research was done properly, you have to review the inclusion criteria very carefully. The outcome of surgery for low back pain, for example, depends on how carefully the candidates were selected. If your doctor says you are a poor candidate, you may seek a second opinion. But don't keep "doctor-shopping" until you find someone foolhardy enough to do a procedure that is unlikely to be beneficial. You could easily be worse off than when you started. I guess that the same thing would apply to surgery on the cervical spine. So even if a study showed good results with a particular procedure, if you don't resemble the patients it worked in, you can't expect that the results of the study will be any guide to your likely experience.

I have high norepinephrine when I stand up, but no other neurological abnormalities that they can find. I 've had documented low blood volume, which I'm trying to correct by salt, water, and licorice. The main thing that helps me is B vitamins, in large doses, which suggests to me that I have some sort of metabolic or mitochondrial problem. I'm able to work, because I have a sit-down type of job. I can't really do housework or gardening or anything that involves prolonged standing up or repeated bending over. If I try, I get a migraine. My main problem is fatigue and lightheadedness. I haven't fainted in years.