HopeSprings Posted October 31, 2012 Report Share Posted October 31, 2012 I keep thinking about that study. Isn't there some way to find out more? Sometimes there will be an e-mail for a Doctor or researcher, but I couldn't find this for the Mayo Doctors. Has anyone who sees Mayo Doctors asked about it? Quote Link to comment Share on other sites More sharing options...
jangle Posted October 31, 2012 Report Share Posted October 31, 2012 I keep thinking about that study. Isn't there some way to find out more? Sometimes there will be an e-mail for a Doctor or researcher, but I couldn't find this for the Mayo Doctors. Has anyone who sees Mayo Doctors asked about it?I already emailed the lead author of the Mayo study, he just replied to me that he does not see patients but that he was forwarding my email to other doctors at Mayo who do. This was about 2 weeks ago, and I haven't gotten a reply back from anyone. Dr. Low who was also in that study also doesn't see patients as I already asked.Part of the reason why I'm going to Mayo is to try to follow up on this. However, I already asked if there are any doctors doing clinical studies at Mayo and the receptionist told me no. I will see if anything changes over the coming months but it seems that no one is fighting right now. Quote Link to comment Share on other sites More sharing options...
issie Posted October 31, 2012 Report Share Posted October 31, 2012 Well, I'm fighting and still pushing. So, you guys don't give up. They may not be doing research - but, some of us patients are and I'm looking to other docs for some possible answers. I have an appt. next week with a scientist/doc and hope I get more info. He thinks he knows what is causing the problem with blood flow to the head and also problems associated with POTS/CFS/MS and Lyme. So, I will fill you in when I know more. His ideas are also connected to autoimmune problems. I'm feeling at least hopeful.Issie Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted October 31, 2012 Author Report Share Posted October 31, 2012 Jangle- the person who e-mailed you back wasn't willing to discuss the study or what it may mean, where they are going from here etc.? So the only way to get information is to actually go to Mayo and try to talk to one of the Doctors there? I'd like to know if the results are promising, if they might apply to a large number of potsies, and if they'll be doing follow up research on this. Quote Link to comment Share on other sites More sharing options...
issie Posted October 31, 2012 Report Share Posted October 31, 2012 I actually sent the abstract report to Dr. G. I never heard back a response about it either. I will see if I can find out anything.Issie Quote Link to comment Share on other sites More sharing options...
bellgirl Posted October 31, 2012 Report Share Posted October 31, 2012 When I had autoantibodies for the heart 14 years ago, my rheumatologist told me to take small dose of aspirin a day, 1 1/4 grains, and that was it. I had a positive IgM anticardiolipin antibody....just had some blood work done a week ago, when I was diagnosed with Fibro; I'll let you know if I can find out anything more when I go see the nurse practitioner today. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted October 31, 2012 Author Report Share Posted October 31, 2012 Thanks, Issie and Kim. Hope more can be learned - it seemed significant! Quote Link to comment Share on other sites More sharing options...
jangle Posted November 1, 2012 Report Share Posted November 1, 2012 Jangle- the person who e-mailed you back wasn't willing to discuss the study or what it may mean, where they are going from here etc.? So the only way to get information is to actually go to Mayo and try to talk to one of the Doctors there? I'd like to know if the results are promising, if they might apply to a large number of potsies, and if they'll be doing follow up research on this.My question to him was if there were any clinical studies that were going to open up about using this research as a treatment. At this point in my life I'm only interested in treatments.I believe the doctors are too busy to field questions from people who aren't even their patients, so I presume I won't get answers until I actually do go to Mayo Clinic. Which according to their wait list is going to be a very long time. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted November 1, 2012 Author Report Share Posted November 1, 2012 My question to him was if there were any clinical studies that were going to open up about using this research as a treatment. At this point in my life I'm only interested in treatments.I believe the doctors are too busy to field questions from people who aren't even their patients, so I presume I won't get answers until I actually do go to Mayo Clinic. Which according to their wait list is going to be a very long time.Oh believe me, I'm with you - treatment is my ultimate goal of course, but first there would have to be an abnormality solidly identified and a way to test for it. Sigh.... let us know what you find out in a year. Sorry you have to wait so long. I want an answer NOW too. Quote Link to comment Share on other sites More sharing options...
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