ramakentesh Posted February 18, 2012 Report Share Posted February 18, 2012 Autoimmunity - and this time to beta 1 and 2 receptors:http://www.ncbi.nlm.nih.gov/pubmed/22130180 Quote Link to comment Share on other sites More sharing options...
issie Posted February 18, 2012 Report Share Posted February 18, 2012 Interesting. So the immune system does play a part in some of our symptoms. This definitely ties this in and it could be at least a partial cause of POTS. Since this study is mostly for those with OI issues would this affect all subsets of POTS since we all have this in varying degrees - or is it a select subset that this would effect?The doc at Mayo has said that there are some of us that have autoimmune components to our POTS and he is trying steroids to see if it will reverse flares.Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 18, 2012 Author Report Share Posted February 18, 2012 POTs could just be a reflection of an alternating course of the same antibodies as an example. Quote Link to comment Share on other sites More sharing options...
issie Posted February 18, 2012 Report Share Posted February 18, 2012 We need to figure out a better way to trick our immune systems and see if we can get it to quit attacking us. I have autoimmune issues - and they are in full swing at the moment. There must be a more natural way to reset it. Steroids are very hard on the system and long term use could cause cancer. So, just thinking - I know olive leaf is a natural way to treat viruses and bacterial type things. Wonder if that would help POTS. I know there is some talk as to whether or not it ups NO levels or down regulates it. The internet says both things. So, not sure which direction that would take us. There probably are other things that may not affect things that we may have issues with. It would first have to be determined if the autoimmune system needs to be more active or less active. Either direction can have similar consequences. And that would also determine what type of herb you would use - if that was what you are trying to tweak. There are many that increase the autoimmune system, but I'd have to do research to figure out what would down regulate it.Then again this brings up another question for me. Today, I was talking to someone and they asked what I thought triggered my POTS. I think I have allot of genetic components to mine - but, the direct trigger, I believe, was an immunization to polio. Since vaccines cause an autoimmune reaction - could some of the problem be connected to this? The response was like diphtheria. It put me and my sis and a friend down for over 3 months and we all got autonomic issues from then on.Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 18, 2012 Author Report Share Posted February 18, 2012 Probably think about medications that reduce innate immune system activity and the activity of proinflammatory cytokines. LDN sounds promising for some. Quote Link to comment Share on other sites More sharing options...
issie Posted February 18, 2012 Report Share Posted February 18, 2012 Yeah, but - then we're back to a RX needed and here the docs won't let us try it. I've already tried to get a script for that and nada. I think we can get it from out of the country - but, not without a prescription - here in the states. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 18, 2012 Author Report Share Posted February 18, 2012 ive got it in the cupboard but I havent tried it yet. Quote Link to comment Share on other sites More sharing options...
anna Posted February 18, 2012 Report Share Posted February 18, 2012 My children and I were invited to and attended an EDS master class last week! I found out some very interesting info while there, one being that the powers that be were in the mist of re-classifiying EDS, now I believe the idea is to do away with the EDS Hypermobility label! Also that many of the top Dr. folk studying HEDS and Hypermobility syndrome think that they are one of the same thing and most likely due to an autoimmune defect of some sort, there was some talk of the last CFS study that showed many CFS patients benefited from the trial of rituximab and how HMS/HEDS possibly had the same root cause. Quote Link to comment Share on other sites More sharing options...
issie Posted February 18, 2012 Report Share Posted February 18, 2012 ive got it in the cupboard but I havent tried it yet.And why NOT? Quote Link to comment Share on other sites More sharing options...
issie Posted February 18, 2012 Report Share Posted February 18, 2012 Anna,How interesting - seeing as one of my problems is EDS. They think that autoimmune things are attacking our collagen? How do they propose to change the attack and when the collagen is already in a defective state -do they think that is reversible? PLEASE, keep me posted on this. So interesting.Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 19, 2012 Author Report Share Posted February 19, 2012 My children and I were invited to and attended an EDS master class last week! I found out some very interesting info while there, one being that the powers that be were in the mist of re-classifiying EDS, now I believe the idea is to do away with the EDS Hypermobility label! Also that many of the top Dr. folk studying HEDS and Hypermobility syndrome think that they are one of the same thing and most likely due to an autoimmune defect of some sort, there was some talk of the last CFS study that showed many CFS patients benefited from the trial of rituximab and how HMS/HEDS possibly had the same root cause.that would make PERFECT sense. Most EDS patients actually have normal flow POTS rather than high flow according to some docs. Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 19, 2012 Report Share Posted February 19, 2012 Anna- Very interesting info you shared! So for those of us who have this, I'm assuming we were born with this auto-immune defect? Interesting. Are there other auto-immune diseases people are born with? There must be but I'm not able to think of any at the moment (but given the way my brain is working tonight, that's not saying much. ) Quote Link to comment Share on other sites More sharing options...
comfortzone Posted February 19, 2012 Report Share Posted February 19, 2012 Yes they are doing the name change things - there's an upcoming International Symposium in Belgium this year -http://www.eds2012.be/committees.htmlHans-Peter BachingerRichard WenstrupPeter ByersDavid BirkAnne-Marie MalfaitMelanie PepinSharon TerryBradley TinkleThe above are the USA people committed to presenting thus far - but you can still submit abstracts etc... Quote Link to comment Share on other sites More sharing options...
issie Posted May 10, 2012 Report Share Posted May 10, 2012 Interesting idea - EDS being connected to autoimmune issues.Issie Quote Link to comment Share on other sites More sharing options...
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