looneymom Posted June 20, 2014 Report Share Posted June 20, 2014 Looks like Oklahoma just gained another doctor. If anyone has had Rhumatic fever, you might want to check this article out. Sydenham's chorea is a movement disorder and has been associated with Rhumatic fever. These antibodies attack the heart and organ muscles and cause neurological problems. This sounds like it could be a possible underlying cause of POTS in children. However, in my personal opinion, I think it's time that strep and mycoplalsama antibodies test be ran on adults to see if these antibodies are in the system. If so there will surely be a shortage on antibiotics, IVIG, and PEX.http://www.houstonpress.com/2014-06-19/news/pandas-medical-mystery/Here is some other interesting research on the same topic.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3645882/http://jid.oxfordjournals.org/content/202/7/1059.fullhttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC3724245/ Quote Link to comment Share on other sites More sharing options...
IceLizard Posted June 20, 2014 Report Share Posted June 20, 2014 Hi looneymom,How is your son Tyler doing? Just recently tests showed that my Antinuclear Antibodies were elevated and speckled, so it is possible that I have a disorder where my cells are attacking my own body. I will be having further testing to investigate. Thank you for your information! Quote Link to comment Share on other sites More sharing options...
looneymom Posted June 20, 2014 Author Report Share Posted June 20, 2014 I am not seeing any improvement in symptoms yet. He should be having another low dosage IVIG tretment this weekend or coming week. I am waiting on a call from the doctor. The ward at the hospital may not have any empty beds yet. Quote Link to comment Share on other sites More sharing options...
jknh9 Posted June 21, 2014 Report Share Posted June 21, 2014 That's very interesting. My neuro suspects something along those lines, and wants me to be tested for antibodies, but the test is super expensive and not covered by insurance unfortunately. It's encouraging that the research is continuing, though. Quote Link to comment Share on other sites More sharing options...
looneymom Posted June 21, 2014 Author Report Share Posted June 21, 2014 With all the research going on, I think we are going to see some new testing being accepted by insurance and doctors. I found a couple more intersting articles. RF seems to be difficult to diagnosie and the antibodies that are found can cause a movement disorder called SC. Some people on the forum have mentioned having tremors and shaking. RF is just another avenue you might want to explore for underlying POTS. My son has tremors/shaking and even doing voluntary movements, like trying to do specific exercise, will even make his worse. This first article explained why this might be happening in RF. The next article looks a specific snips (23 and Me testing) (gentic genie or livewello results) that point toward the inflammation markers in RF.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002660/http://www.annalspc.com/article.asp?issn=0974-2069;year=2011;volume=4;issue=1;spage=13;epage=21;aulast=Guilherme Quote Link to comment Share on other sites More sharing options...
jknh9 Posted June 21, 2014 Report Share Posted June 21, 2014 That's very interesting. I also have trembling and involuntary movements and full-body uncontrollable shaking (which I believe to be hypoxic seizures), and I was sick for weeks as a baby but the doctors, as far as I know, never came up with a diagnosis. I was just hospitalized for a few weeks and then released with them guessing it was just a random virus. Thanks for sharing these with us. I'm going to print them out and mention them at my next neuro appointment. Quote Link to comment Share on other sites More sharing options...
looneymom Posted June 22, 2014 Author Report Share Posted June 22, 2014 You are very welcome. I don't know if any studies are being done with adults at this point but I will ask our cardiologist. My son has his next IVIG treatment this coming week and our cardiologist is on call at the hospital. I know I am getting closer to some answers with my son and just can't stand the thought that other people are suffering just like my son. Quote Link to comment Share on other sites More sharing options...
IceLizard Posted June 24, 2014 Report Share Posted June 24, 2014 Thank you, I hope your son starts seeing some improvement soon! Quote Link to comment Share on other sites More sharing options...
Raisin Posted June 25, 2014 Report Share Posted June 25, 2014 Let us know how the appt. goes! I think we can all learn from one another. God Bless. Quote Link to comment Share on other sites More sharing options...
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