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Everything posted by Katybug

  1. Thanks Sue. No I haven't. My mom and sister both have Hashimoto's so I have been tested twice in the last two year's for that but I don't think anyone has mentioned hyperparathyroidism. I'll look into it. I find it fishy that POTS so often has adrenal ties and I have a cyst sitting on my adrenal gland. I've just gotten to the point that I don't believe in coincidences that much anymore. I appreciate you responding!
  2. I had to have a kidney stone surgically removed in 2009 before we knew I had POTS. As a side note to all of the sonograms that were done then, I was told I have a small benign adrenal cyst that lots of people have and that they don't affect anything and not to worry about it. But I noticed on someone elses profile that they have one too. Do any other POTSies out there know if they have these? Could these be affecting us somehow?
  3. Hi Naomi. I am just starting my own POTS treatment but I noticed part of your plan involves investigating Lyme disease. I had/have tick borne illness that went undiagnosed for at least 6 months after I started seeing doctors (17 of them) and it was my veterinarian that asked the righ question finally. Then once I was tested for Lyme and several Lyme co-infections I was undertreated because of what the AMA considers standard treatment protocols. The medical community is very divided on Lyme disease and tick borne illness diagnosis and treatment. There is an organization, ILADS, which you can read about at www.ILADS.org (sorry I don't know how to implant the actual link). I was still so sick after the standard treatment that when I found ILADS I called them to find a doctor in my area that was a member of ILADS. They are health care practitioners that beleive that tickborne illness can be chronic persistent infection if not treated during early infection and may require longer more agressive treatment methods and may also require broader diagnostics since the tests aren't reliable. You can find a lot of information about tick borne illness on this website also. The organization was able to give me a list of members in my area when I called them and expalined what I was looking for. There is also a really good book called "The Lyme Disease Solution" by Kenneth Singleton that is an easy read and has good information and also contains a good "diet" for people who need to reduce inflammation in their body. The food wasn't anything horrible and it cuts out a lot of food a first and then gradually adds foods back in a week at a time(not all things of course) so you cansee if there are particular things that may set off your immune system. Hope this information helps you or someone else with Lyme because I had a hard time finding resources. Even though it seems like lot of people have had Lyme at this point, doctors don't seem very educated about the long term effects.
  4. I'm in Baltimore and I got it at a health food/ homepathic pharmacy called Prescription for Health but I have seen it in health food and vitamin catalogs. I don't think it is too hard to find.
  5. I have not taken licorice for POTS symptoms but did use it a few years ago as part of my treatment for GERD symptoms while being treated for tick borne illness as I was on heavy doses of antibiotics. My Lyme doc used a combination of traditional and alternative therapies for treatment and taking licorice tabs was one of the ways we controlled my GERD. That was well before my POTS diagnosis but I was starting my POTS symptoms at the time and I have to say that I often felt an "all around" sense of wellness that my doc and I couldn't really explain when I would take my licorice tabs. Maybe I was helping my undiagnosed POTS! I would say that if you have GERD, it wouldn't hurt to see if you can get some relief for that from the licorice. I do remember there being a warning on the bottle regarding taking licorice for people with heart conditions so you may want to look that up before takng it.
  6. Hi Ernie. I have POTS and severe migraines and have lots of visual disturbances between the two syndromes. I don't know if you would call them hallucinations or not but one second it looks like something is there and the next second its gone. I have had more than one doctor suggest that I had mental issues before my POTS was diagnosed. It is good to know your nephew has you for an advocate. It is my understanding that a significant feature of schizophrenia is also hearing voices which you did not mention he experiences. I agree with the other members that you should seek at least a second opinion if not a third or fourth. Labeling a teenager with a mental illness is no small matter as you said and neither are the drugs that they will put him on. Good luck to both of you.
  7. Hi SJSB! I was diagnosed with POTS by way of 2 TTT. I had severe pre-syncope symptoms on both tests although I did not pass out on either test. I have not had my license taken away because of the diagnosis. I think the laws dictating what diagnosis doctors have to report to the motor vehicle administrations vary from state to state. I'm in Maryland for example and POTS does not have to be reported but narcolepsy (which they thought was a possible cause of my symptoms before finding the POTS) does have to be reported. I totally understand your general fear about the TTT. I was really scared too when I walked in for the first one but I was determined to find out what was wrong with me and if it meant feeling 45 minutes of knowing my symptoms were coming so that the doctors could finally have a clue how to treat me it was going to be worth it and it was absolutely worth it! My second one was conducted by a specialist in POTS and he did it a little differently but I was told before both of them at the two different facilities that if I wanted them to end the test and lay me down at any time all I needed to do was say so. I was also never left alone at either facility. I got the impression that this was common practice but if you have questions about how your procedure will be handled ask ahead of time so you can help lay some of your fears to rest. Good luck!
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