December 30, 2012 at 3:26 pm #378
Hello, my friends, someone asked me to comment on Dr. Fry and his miraculous discovery of “Protomxyzoa rheumatica” as a cause of POTS. I felt compelled to respond and to direct you to http://relative-risk.blogspot.com/2012/04/real-quacks-imaginary-bugs.html (you need to cut and paste for this link to work). Personally, I have a bad feeling about this. You probably know that in my family, we were triggered by viruses. I also know folks who were triggered by trauma, bacterial endotoxins, etc. I don’t believe that the “trigger” itself alters the progression, nor the treatment. This doctor recommends eating almost no fat or MAGNESIUM. That scares me for so many — as you may know, most EDS/POTS patients are low in magnesium INTRACELLULARLY. As I explained in my book, catecholamines can reduce magnesium levels — we don’t need protozoa to do that! An anti-inflammatory diet is helpful, certainly, but so are “good fats”. I actually increased my “good fats” with good results… Caution is the name of the game, my friends. Be smart. Do your homework. Don’t be a victim. There is a fair amount of “real science” going on in the background that most of us don’t have privy to. Don’t give up, OK? Big, SMART hug, DianaDecember 31, 2012 at 9:47 pm #3278PalominoMorganParticipant
I listen to my body. Not bloggers. 🙂January 1, 2013 at 9:13 am #3282
I listen to my body. Not bloggers. 🙂
So smart! Perhaps this relates to your statement about ‘not being so open-minded that your brain falls out of your head?’ 🙂January 3, 2013 at 10:35 pm #3290
This is my response to a post that was deleted:AdlersMommy, please see my above response. The diet is not my greatest source of concern (nor Dr. Fry’s greatest source of income). A few concerns: 1) There is no evidence of the existence of this protozoa on Google Scholar or PubMed 2) Dr. Fry owns the ONLY lab that can “test” for this protozoa 3) He has no journal publications nor clinical trials (yet is charging the patients) 4)I read everything I can find about his work. I have found nothing that reassures me he is on the up and up. No other doctors have validated his findings in five years. There is no photo of this protozoa. I would think a huge discovery like this would warrant investigation by a research center of some sort, especially if it is the cause of the NUMEROUS conditions he claims. 5)You say that he is only recommending a change in diet (and no magnesium), but I read about his later recommendations for expensive IV treatments (again, not as part of clinical trials) 6)My own research results are in conflict with his findings. So, this is a protozoa that only Dr. Fry has found, only Dr. Fry can test for, and only Dr. Fry can treat? Bells are ringing all over the place. I think it is important NOT to confuse a doctor who seems kind and patient, with one who is ethical. I don’t understand what you mean by ‘my family members were triggered by viruses’ — “HAH”?! No, I haven’t discussed all of my thoughts about our condition(EDS/dysautonomia). I have not yet published it. I am currently patenting some of it, as initial trials (which were self-funded — patients were never charged) were so encouraging. I do not seek “cures” for genetic defects, but I have found some “work-arounds” for aspects of our condition that have been over-looked. Figuring these things out has not eliminated our need for medication, but I am medicating the source of our problems, not the symptoms. Being in this EDS/POTS world for so many years, I have learned that if we just treat the symptoms, our path can become quite dreadful. I am excited to share what I’ve learned soon. Everyone, of course, has the ability to consider all of their options, and to review the science for themselves. And if someone doesn’t want to know what I think, then they shouldn’t ask. Plain and simple. I get numerous requests from all kinds of doctors, nurses and non-medical folks looking for a platform to try to sell their wares. I do my best to try to discern what is legitimate, and what may not be. This is one that made the hair stand up on the back of my neck. Yikes…
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