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Thanks WI mom, We were actually referred to Mayo by Mike's old EP from Chicago Childrens who is now at Wisconsin Children's. Dr. Janette Strasburger is way up north (sorry, don't know the exact town) but she comes to Milwaukee Children's once a week on Thursdays. We don't have a lot of experience with her - she first diagnosed Mike in Chicago in 1999 with a TTT. We tracked her down and tried to see her this same time last year, but she got stuck in the snow storm and couldn't make it. She arranged for Mike to see her colleague, who was very nice, but it's not the same. Anyway, she was kind enough, even with so little current info on Mike, to make the referral to Dr. Low. If you need a pediatric EP who knows POTS you might want to check her out. Mike is 23 now and lives in Phoenix - we live north of Chicago. He's had symptoms since he was 8 years old (in retrospect, maybe before), and was successively misdiagnosed at Chicago major medical centers with tachycardia (partly true!), seizure disorder, and ADD. As you know, it's so tough to see your kids sick. I'm a nurse, so add that guilt onto the usual Mom guilt. Thanks for caring, Dianne (Mike's mom)

Hey Gracie, See my earlier message on this same topic. I think your difficulty in getting into Mayo is in trying to get into Dr. Low's clinic specifically. When I spoke with his appointment secretary, she made it clear that while anyone can self-refer to Mayo, to see Dr. Low specifically (and perhaps other doctors as well - I don't know), you need a referral from your doctor. She said that Dr. Low would review the referral and then call us to let us know if and when we would be seen. I don't know why we were selected and others are rejected. I've read another post that complained that when they went with a Mayo internist, and tried to get them to refer to Dr. Low for his work up, that the Mayo internist refused to make the referral. I don't have any experience in this, but from the website, it's my understanding that you can self refer to Mayo in general either by phone or through the website. This seems preferable to simply showing up and spending day after day waiting in the clinic to be seen by someone. Good luck! Dianne (Mike's mom)

I would echo Miriam. My son just got an appointment with Dr. Low for Jan 16th following a referral by his diagnosing electrophysiologist. To Lukkycharm - I think that you can self-refer to Mayo and you'll be given a primary care doc who shepards you through the system. But if you want to see Dr. Low, you do need a medical referral. If you don't have one, then you have to start with one of their primary care docs. I have a question. They told us to prepare for 3 to 7 days of testing at Mayo. That's quite a range. What has been your experience there? thanks, dianne

Hi Sunfish, You expressed concern about natural remedies as not being able to know with certainty what is in them. Maybe I can shed some light on using natural remedies with confidence, or at least with discretion. I am an RN, worked for years in the regulatory side of the pharmaceutical industry, and also owned a health food store. First, it's a myth that natural remedies are unregulated in the U.S. They are indeed regulated by the FDA and subject to the federal code of regulations. They are regulated differently from drugs, as they are not drugs, but they are regulated. To confirm for yourself, go to the the FDA website - www.fda.gov - and note in the left side box the scope of FDA-regulated products. Supplements comes under the first category of "food". IMO, the FDA has been remiss in their duties to we taxpayers, but that's another post entirely. Second, many natural health manufacturers subscribe to either their own professional societies guidelines or to the FDA pharmaceutical manufacturing guidelines. Of course, there are plenty who subscribe to absolutely no guidelines at all. How to tell? If a company makes any OTC (over the counter) products (you can tell these by an NDC number and an information box on the package that list "drug facts" - the layout will look similar to the information box on tylenol, tums, sudafed, etc.), then all of their manufacturing must be in compliance even for their supplement products. For example, Enzymatic Therapy makes a product called Air Power which is an otc (active ingredient is guafenesin), so they are in compliance with pharmaceutical manufacturing regs. Companies such as Nature's Way and Nature's Herbs also make OTCs so are in pharma compliance. Another company, Carlson, says on its packaging "Made in an FDA approved facility". What does this mean? It means that if the label says 100 mg of licorice root, that in fact is in the bottle. It is tested for batch to batch consistency for active constituents, contamination by biologics (mold, bacteria, etc) and also for contamination by other products. That is, it is only licorice and nothing else. Since such companies have invested a lot of money in their manufacturing infrastructure - equipment, procedures, staff - and make themselves open to FDA inspection, they are also likely to choose appropriate top quality ingredients as well. What does that mean? Well, have you ever bought a cheap coffee vs a really good coffee? A flavorless green house tomato vs a really sweet garden grown variety? Same applies to herbs. BTW, homeopathy is an OTC in this country and therefore regulated as a drug. My advice - buy only supplements from top quality suppliers and from manufacturers who are members of NNFA - the National Nutritional Foods Association. Investigate their quality procedures. Avoid supplements sold on tv, the internet (only) and out of someone's home. Advertising "quality" on a label or in written material is meaningless. Ask to see the documentation. I can't tell you how many manufacturer's reps tried to get me to carry their line by a lot of fast talk about quality. But when I demanded the procedural documentation signed off by their quality and regulatory staff, NOTHING. Documentation should either say that they're in compliance with the gmp (good manufacturing procedures) guidelines of the NNFA or the gmp guidelines of 21 CFR (code of federal regulations). It must be dated and signed by someone with authority in the quality group (eg, Joe Smith, VP Quality) and be on company letterhead. If you have a chronic condition and plan to use supplements, I advise subscribing to a publication that the Journal of the American Medical Association called the "gold standard" of supplements - the Natural Medicines Comprehensive Databse published by The Pharmacist's Letter. (www.naturaldatabase.com) You can subscribe either just online (which I like best - continual updates) or buy the book. You can print off supplement fact sheets to take to your doctor which lists the action, interactions, contraindications, etc plus gives all the relevant references to the scientific literature. The layout is similar to the PDR, so docs find it easy to read. Almost all pharmacies now stock this reference, so if you're on meds and buying supplements, your pharmacist can help guide you. Sorry this is so long, but hope it clarifies some issues. I'd be happy to answer any questions