jpjd59 Posted September 16, 2012 Report Share Posted September 16, 2012 I am curious as to anyone has heard of this syndrome (apparently POTS is one of the many symptoms). I can't find much informaion about it on the internet.It suggests taking low dose naltrexone. Has anyone tried this drug and, if so, did it help?Pam Quote Link to comment Share on other sites More sharing options...
Christy_D Posted September 16, 2012 Report Share Posted September 16, 2012 Wow,I just read a very interesting article on it after seeing your post. Where did you come across this? It includes POTS and mast cell issues in it. http://autismapocalypse.com/ Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted September 16, 2012 Author Report Share Posted September 16, 2012 ChristyD:Yes - that's exactly what caught my attention (since my daughter has been diagnosed with POTS and they think some kind of mast cell issue is going on although tryptase,etc. have all come back normal).I just happened to run across the article in my many hours of research on the computer. I was trying to find out what could possibly be going on with my daughter that the doctors could be missing. I have taken the article to two of my daughter's doctors and both have never heard of this syndrome. All of the symptoms seem to fit what my daughter is experiencing yet the medical community seems to be unaware of this syndrome (if it truly is a real syndrome). I would love to know if anyone knows anything about it.Pam Quote Link to comment Share on other sites More sharing options...
flyingsquirrel Posted September 16, 2012 Report Share Posted September 16, 2012 This is not a medically recognized syndrome. There is no peer-reviewed research or case reports in the medical literature. The sites on which it is discussed are those devoted to the pseudoscience and propaganda surrounding anti-vaccination.Syndromes and diseases are usually named after the first person to discuss them in the medical literature. As this has not been published in a legitimate scientific journal, I was interested to see how it was named...also two of the three names stood out...Andrew Wakefied is the disgraced physician who published the article in the Lancet that started the anti-vaccine panic/movement. His "research" was later revealed to be fradulent and unethical. The Lancet retracted the article and he lost his medical license.Paul Offit is an infectious disease physican and pediatrician one of the leading proponents of the safety of vaccines. As such he is a frequent target for anti-vaccination groups. His inclusion in the title is ironic, as part of the article cited above purports to explain the syndrome in "simple terms that even Paul Offit can understand."The last name wasn't familiar to me, but a quick google search yielded Alan Phillips JD, a "vaccine rights" lawyer, who fights for your right not to vaccinate your children, thereby turning them into biological weapons.EDIT: I understand what it is like to feel that current medical science has failed to offer answers to our problems, but that is no excuse to fall victim to these snake oil salesmen. They feed off our desperation and need for answers coupled with current medical science's lack of answers for us. We didn't even know that the immune system existed a hundred years ago. Medical science is a constantly evolving field of knowledge. If we don't understand why POTS or MCAS or IST happen, it's because medicine hasn't developed that far yet. If we don't know how to treat them effectively, it's beacuse we haven't yet learned the biochemistry that will allow us to do so. Quote Link to comment Share on other sites More sharing options...
issie Posted September 16, 2012 Report Share Posted September 16, 2012 That is an interesting article. I feel that a vaccine is what triggered my issues with POTS - when I was about 8 years old. This vaccine was a polio vaccine and has some connections with diphtheria. I also know that my P450 liver detox pathways do not work right. It's interesting that most of the things that I've discovered - over time - are mentioned in this article. Maybe, this is/was a "pioneer" type doc. Life Extension magazine is always talking about this very thing - and how this is going on when a doctor talks out against what the pharmaceutical companies rather not have exposed.Issie Quote Link to comment Share on other sites More sharing options...
jangle Posted September 16, 2012 Report Share Posted September 16, 2012 say whaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa.........aaaaaaaaaaaaaaaaat?I'll look it up.EDIT: Flyingsquirrel pretty much summed up my opinion. Quote Link to comment Share on other sites More sharing options...
issie Posted September 17, 2012 Report Share Posted September 17, 2012 We got to have those "out of the box thinkers". I personally - don't take vaccines - so, I'm gonna be in the other corner. I had a doc tell me one time that he personally had seen a vaccine cause a child to become autistic ---more than once. Then you've got documented cases of people getting Guillain Barre from a flu shot - my dad did. So, you won't convince me that vaccines can't cause some of the illness and trigger genes to turn on - that may otherwise have stayed dormant.Issie Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted September 17, 2012 Author Report Share Posted September 17, 2012 Issie:I agree that sometimes we have to have people/doctors that think "out of the box". We've exhausted pretty much every other avenue that we have tried so at this point we NEED a doctor who will think"out of the box". We're so tired of having doctors say to come back every month to see them (this process has been going on for 14 months and my daughter is just getting worse).I really feel frustrated and helpless at this point!!!Pam Quote Link to comment Share on other sites More sharing options...
issie Posted September 17, 2012 Report Share Posted September 17, 2012 I hear you Pam - frustrated myself. I've been researching and looking for answers for a long time. The best I can get is just a little more quality with different things that I try. It does get tiring. I have found that things will work for awhile and then stop. So, finding rotating meds and supplements is working better for me. I think trying to change the way you think and look at things is the best medicine. Attitude counts for a whole lot in being able to deal with a chronic illness.Issie Quote Link to comment Share on other sites More sharing options...
Libby Posted September 17, 2012 Report Share Posted September 17, 2012 Amen, flying squirrel. Vaccines have done more good for the world than arguably any other scientific advancement. The fact that nearly all of the US population has been immunized against so many diseases is what allows vaccination opponents to ride the coattails of herd immunity and remain healthy - and alive - while they protest. Even if my POTS were triggered by immunization, I wouldn't stop immunizing myself or my (far, far, in the future ) kids. If I hadn't gotten that immunization, who's to say that the flu I would have gotten that year wouldn't have triggered my POTS? I think that there are times that we have to look at the bigger, statistical picture. Even if we ourselves fall into the less favorable percentile. Quote Link to comment Share on other sites More sharing options...
targs66 Posted September 17, 2012 Report Share Posted September 17, 2012 hi Pam - to answer one question in your original post, I've recently tried low dose naltrexone (LDN). I'm usually on the skeptical side of these type of things, but have several reasons for trying it. I'm going to start another topic to address it.-targs Quote Link to comment Share on other sites More sharing options...
issie Posted September 17, 2012 Report Share Posted September 17, 2012 Yeah, people feel very strongly about this, there have been other discussions on this forum about it. Quote Link to comment Share on other sites More sharing options...
Katybug Posted September 17, 2012 Report Share Posted September 17, 2012 Hi folks. I think this is like anything else....most people will be fine with a given treatment but there is always a subset of the population that will have an adverse reaction. I think we all have to educate ourselves on the pros and cons of any treatment and decide what we are willing to risk as individuals. Quote Link to comment Share on other sites More sharing options...
issie Posted September 18, 2012 Report Share Posted September 18, 2012 Hi folks. I think this is like anything else....most people will be fine with a given treatment but there is always a subset of the population that will have an adverse reaction. I think we all have to educate ourselves on the pros and cons of any treatment and decide what we are willing to risk as individuals.I do agree. Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted September 18, 2012 Author Report Share Posted September 18, 2012 I did not start this thread to state that people should not get vaccines. That is just what the "syndrome" focuses on - however it also stated that it can be caused by trauma to the body or a virus (which was my daughter's case). Pam Quote Link to comment Share on other sites More sharing options...
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