Fussybug Posted July 26, 2012 Report Share Posted July 26, 2012 Hi Everybody,I have been reading from this website for quite awhile, before finally getting my validation today. I am grateful for all the education I received through reading your posts. It has been invaluable in understanding the care I am receiving. I am grateful. I would like to introduce myself in hopes of finding others in a similar situation, and so that my story will possibly be of help to someone else as yours were and continue to be for me.My name is Amy. I contracted Lyme and Babesia in 1989 on Cape Cod. I was one of the fortunate ones that had EM rashes to tell the tale. However, with negative titers my diagnosis was delayed 14 months (which is still awful lucky). I am a Michigan native so my diagnosis and treatment began at University of Michigan. Despite aggressive and adequate treatment for Lyme and Babesia, I never regained full health. I lingered out there in a "chronic fatigue" state for years, chasing down random health problems that never came together to create a full picture. In 2008 I had a rough go with Influenza B and I took a hard turn for the worse. Symptoms were mounting monthly - low blood pressure, high heart rate, TIA-like episodes, optic neuritis, ptosis, left arm/leg weakness, GI pain, neck pain/inflammation, chills, low grade fevers, night sweats, sore throats, ear pain and ringing, cardiac symptoms, lymph node swelling and the list goes on.Dysautonomia was diagnosed 2 years ago by Dr Vernino at UTSW in Dallas. I was slightly under the official numbers for a POTS diagnosis per my testing in the autonomic lab. Therefore, he began with a diagnosis of Orthostatic Intolerance likely caused by hypovolemia. As Dr Vernino followed me and collected more data I was eventually told I had POTS. I had the good fortune to meet Dr Levine last week, for another opinion on my complicated case. After initial findings he is sending me through to the next phase of testing, different than Dr Vernino has done. I am optimistic the August testing will shed much light.Look forward to interacting, instead of lurking!!!!!! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted July 26, 2012 Report Share Posted July 26, 2012 Welcome, and keep us posted as you find out more. Interested in what Dr. Levine tests. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted July 26, 2012 Report Share Posted July 26, 2012 Lurk away ...I've been tested for Lyme and negative, but have since been bitten by two ticks, ugh...going back to my neurologist in September. This time I saved the tick, yah!! I must taste good...I really live in the woods, though, but not up in a tree!! lol Dr. Levine has done many studies and many talk about him here. Hope you have a good appointment with him. Welcome to the site, Amy Quote Link to comment Share on other sites More sharing options...
corina Posted July 27, 2012 Report Share Posted July 27, 2012 Hi Amy, welcome to the forum! I hope your testing in August will work out very well for you and give you the answers you need. Let us know how things go! Quote Link to comment Share on other sites More sharing options...
heathmcev Posted July 27, 2012 Report Share Posted July 27, 2012 Hi Amy!! Welcome. Hope others with Lyme dx's jump on!Heather Quote Link to comment Share on other sites More sharing options...
roxie Posted July 27, 2012 Report Share Posted July 27, 2012 Welcome Amy! Can I ask what you mean by slightly under pots diagnosis from autonomic testing? Quote Link to comment Share on other sites More sharing options...
Fussybug Posted July 28, 2012 Author Report Share Posted July 28, 2012 I was told my heart rate elevation didn't hit 30bpm at the first appointment - tilt table testing. . I was 28 bpm. But since neurologist has seen the bigger jumps with the 10 minute stand tests he does at office visits and the notes I've shown him. Does that make sense? Please educate me if I am confused. Quote Link to comment Share on other sites More sharing options...
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