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A Paradigm Shift In Treating EDS/POTS
Do you suffer from EDS/POTS? Have you been told that your condition is genetic and therefore you just have to learn to live with it? Have you been told that all your odd symptoms are not related to EDS/POTS? Have you tried so many different treatments, supplements or diets that did not help?
This book is for you. This book will explain many of your strange symptoms and how they may all be connected. It offers a whole body approach to improve your health and return you to a better quality life. Finally, you will understand how your central nervous system is the way to healing, and have renewed hope.
This book is for you. This book will explain many of your strange symptoms and how they may all be connected. It offers a whole body approach to improve your health and return you to a better quality life. Finally, you will understand how your central nervous system is the way to healing, and have renewed hope.
248 pages, Kindle Edition
Published April 16, 2024
29 people are currently reading
15 people want to read
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December 23, 2024
This book is definitely fascinating and I appreciate it shedding light and opening up discussions on eds that are evident and yet never talked about.
It’s important to note that the author does have a clinic where she treats people with EDS and does have some product recommendations (she has a discount code for exactly one of them). However, I don’t believe she’s just writing this book to try to upsell you. (1) if she did she’d probably do a free ebook that withheld a lot of information (2) her testimonies in the back both readily admit they’re not in complete remission after her clinic; they’re simply doing much much better than they were previously. She also recognizes that her success rate with MALS (a comorbidity of EDS) is hit or miss. (3) she will talk about working with patients and what she’s witnessed and used in practice, but she actually does not bring up her clinic very often. (4) she provides a ton of intervention options that don’t require her clinic and I do feel as though the bit about her clinic in the end was quickly presented if you wanted extra support. She simply just did not write this book as someone who is trying to convince you to go to their very expensive and largely inaccessible clinic (withholding information, dropping the name of clinic constantly, slipping in endless testimonies and anecdotes of happy patients, etc). I don’t believe it’s her intent, but it’s an important conflict of interest to know before reading the book.
The overall hypothesis of this book can be summed up with the quote “EDS/POTS is linked to a global failure of the central nervous and immune systems” Along with a belief that epigenetics play a significant role and genes for EDS/POTS can essentially be turned off and on. I wish she had a clearer statement of what she thinks is the relationship between epigenetics and CNS/immune system is, but my best interpretation is that she sees genetic expression (not just the mutation) as a requirement and CNS/immune system dysfunction as the cause assuming the epigenetic requirement for EDS/POTS is met.
I think there’s a very high chance she’s onto something and this aligns with my personal experience and all the anecdotes and healing stories of EDS I’ve collected.
The tips and advice she gives for changing genetic expression (starting on page 113) are the exact lifestyle changes I made that got my EDS into remission within just two weeks. She is the only person I’ve found to validate that experience and give an explanation as to why it was so revolutionary to my healing.
This personal experience, however, did leave me with more questions than this chapter answered such as: how quickly does gene expression change? Is it a gradual or all at once? What happens if you fix genetic expression but not CNS/IS or vice versa? Or any thoughts on differences in genetic mutations in EDS or hEds specifically.
But I will say I’m just very, very excited to see someone finally opening up the discussion on EDS (1) at least sometimes being epigenetic instead of **just** genetic (2) having a significant immune system role. I’ve waited a long time for someone to point out the obvious.
The chapter I see the most problems with is the one written by her sister - also a chiropractor - on diet. There’s a lot to readily agree with but I do take issues with (1) 1 tsp of salt a day is not even close to kind of enough. Not even in the ballpark. (2) no discussion on carbs worsening POTS symptoms (but you can learn lots from videos Dysautonomia International puts out) (3) I just want to know why old people struggle with too much fiber? Author makes it sound obvious but I’ve never heard that lol (4) the discussion on MTHFR seems incomplete to me. She basically says “who cares?” But, um, I care🙋♀️ the research coming from Tulane on taking a methylated folic acid supplement has been so unbelievably successful in minimizing EDS symptoms I just cant believe she’d brush over it so quickly and not bring up that research (5) her discussion on supplements does not encourage dietary sources or give brief lists of foods helpful for attaining these vitamins/minerals/whatevers.
And, lastly, (6) her thoughts and patient experiences about keto were truly wild to me. She’s claiming that people with EDS can’t handle burning fat for primary fuel and will actually burn muscle before fat— which intuitively and anecdotally does not track. At all. I’ve overwhelmingly heard (and experienced firsthand) that people with EDS do the best on keto diet and report the least pain. I’ve heard it enough that I personally accepted it as fact a long, long time ago. The vast majority of people who have healed from EDS have done so with the carnivore diet, which is just the extra extreme version of keto. I honestly just feel like her sister made that section up; I’ve only ever heard the exact opposite from the people who have actually lived it. Combined with the insinuation that eating one meal a day makes you fat and that you should live your life on a constant carb rollercoaster and that your glucose drops are then a separate problem and diagnosis that you need to manage instead of fix at the root cause……. Idk it just seems really sketchy to me. None of that section makes any sense scientifically, anecdotally, logically, or intuitively. I don’t trust it. It’s weird.
My other big gripe with this book is that she says that infections play a big part (again- love that someone finally stating the obvious!!) and that testing which infection isn’t worth it because you treat them all the same anyway…………. But then says to work with a functional doctor and doesn’t give you any advice on what to do. If you treat them all the same way why isn’t there any direction? Is it a liability thing? Is it too long and complicated?
And there were still other topics I wish were touched on (the new research coming out that POTS may be autoimmune, why a common onset of symptoms is between ages 27-32, if rarer types have less of an epigenetic component, any possible glyphosate role, why infection is detrimental specifically to collagen, etc.) but were omitted.
I just feel as though this book was not as thorough as it could or should have been or as well researched. It seems as though they started treating people with EDS, experimented, did research in their realm, and didn’t think to do research outside of their realm. It left me with a feeling of incompleteness. This is someone who knows a lot about EDS but it is not their life’s work.
Despite those downfalls- this book is still worth a read. I wrote down several rabbit holes to research and a list of things to implement to see if I can finally heal my POTS for good. The flip side of researching and taking perspective only within their realm is a refreshing take on EDS and finding patterns and connections that have been overlooked by other researchers.
If you’re completely new to this world, this is certainly a great place to start your own healing journey. I would not take this book as fact, but meaningful EDS research is *almost* non existent (shoutout to Tulane we love you!) so this is as advanced as you can get in 2025. I’m sure we’ll continue to learn and understanding will evolve and some things in here will likely be proven as missing the mark, but it’s a great launching pad to begin your own research and experiments and a general lens in which to view EDS (maybe not all cases of EDS, but certainly a large fraction). If nothing else I’m just really glad to see someone opening up *real* discussion about EDS for the first time.
Decided to round up to 4 stars ⭐️⭐️⭐️⭐️ simply because the information in this book does have the potential to get you your life back - experiment and see what works, but she nailed exactly what cured me several years ago. Take it all with a grain of salt, but at the end of the day this book has the potential to do a lot of good and give you a lot of great starting points for you to get your life back.
Happy healing!!!!
It’s important to note that the author does have a clinic where she treats people with EDS and does have some product recommendations (she has a discount code for exactly one of them). However, I don’t believe she’s just writing this book to try to upsell you. (1) if she did she’d probably do a free ebook that withheld a lot of information (2) her testimonies in the back both readily admit they’re not in complete remission after her clinic; they’re simply doing much much better than they were previously. She also recognizes that her success rate with MALS (a comorbidity of EDS) is hit or miss. (3) she will talk about working with patients and what she’s witnessed and used in practice, but she actually does not bring up her clinic very often. (4) she provides a ton of intervention options that don’t require her clinic and I do feel as though the bit about her clinic in the end was quickly presented if you wanted extra support. She simply just did not write this book as someone who is trying to convince you to go to their very expensive and largely inaccessible clinic (withholding information, dropping the name of clinic constantly, slipping in endless testimonies and anecdotes of happy patients, etc). I don’t believe it’s her intent, but it’s an important conflict of interest to know before reading the book.
The overall hypothesis of this book can be summed up with the quote “EDS/POTS is linked to a global failure of the central nervous and immune systems” Along with a belief that epigenetics play a significant role and genes for EDS/POTS can essentially be turned off and on. I wish she had a clearer statement of what she thinks is the relationship between epigenetics and CNS/immune system is, but my best interpretation is that she sees genetic expression (not just the mutation) as a requirement and CNS/immune system dysfunction as the cause assuming the epigenetic requirement for EDS/POTS is met.
I think there’s a very high chance she’s onto something and this aligns with my personal experience and all the anecdotes and healing stories of EDS I’ve collected.
The tips and advice she gives for changing genetic expression (starting on page 113) are the exact lifestyle changes I made that got my EDS into remission within just two weeks. She is the only person I’ve found to validate that experience and give an explanation as to why it was so revolutionary to my healing.
This personal experience, however, did leave me with more questions than this chapter answered such as: how quickly does gene expression change? Is it a gradual or all at once? What happens if you fix genetic expression but not CNS/IS or vice versa? Or any thoughts on differences in genetic mutations in EDS or hEds specifically.
But I will say I’m just very, very excited to see someone finally opening up the discussion on EDS (1) at least sometimes being epigenetic instead of **just** genetic (2) having a significant immune system role. I’ve waited a long time for someone to point out the obvious.
The chapter I see the most problems with is the one written by her sister - also a chiropractor - on diet. There’s a lot to readily agree with but I do take issues with (1) 1 tsp of salt a day is not even close to kind of enough. Not even in the ballpark. (2) no discussion on carbs worsening POTS symptoms (but you can learn lots from videos Dysautonomia International puts out) (3) I just want to know why old people struggle with too much fiber? Author makes it sound obvious but I’ve never heard that lol (4) the discussion on MTHFR seems incomplete to me. She basically says “who cares?” But, um, I care🙋♀️ the research coming from Tulane on taking a methylated folic acid supplement has been so unbelievably successful in minimizing EDS symptoms I just cant believe she’d brush over it so quickly and not bring up that research (5) her discussion on supplements does not encourage dietary sources or give brief lists of foods helpful for attaining these vitamins/minerals/whatevers.
And, lastly, (6) her thoughts and patient experiences about keto were truly wild to me. She’s claiming that people with EDS can’t handle burning fat for primary fuel and will actually burn muscle before fat— which intuitively and anecdotally does not track. At all. I’ve overwhelmingly heard (and experienced firsthand) that people with EDS do the best on keto diet and report the least pain. I’ve heard it enough that I personally accepted it as fact a long, long time ago. The vast majority of people who have healed from EDS have done so with the carnivore diet, which is just the extra extreme version of keto. I honestly just feel like her sister made that section up; I’ve only ever heard the exact opposite from the people who have actually lived it. Combined with the insinuation that eating one meal a day makes you fat and that you should live your life on a constant carb rollercoaster and that your glucose drops are then a separate problem and diagnosis that you need to manage instead of fix at the root cause……. Idk it just seems really sketchy to me. None of that section makes any sense scientifically, anecdotally, logically, or intuitively. I don’t trust it. It’s weird.
My other big gripe with this book is that she says that infections play a big part (again- love that someone finally stating the obvious!!) and that testing which infection isn’t worth it because you treat them all the same anyway…………. But then says to work with a functional doctor and doesn’t give you any advice on what to do. If you treat them all the same way why isn’t there any direction? Is it a liability thing? Is it too long and complicated?
And there were still other topics I wish were touched on (the new research coming out that POTS may be autoimmune, why a common onset of symptoms is between ages 27-32, if rarer types have less of an epigenetic component, any possible glyphosate role, why infection is detrimental specifically to collagen, etc.) but were omitted.
I just feel as though this book was not as thorough as it could or should have been or as well researched. It seems as though they started treating people with EDS, experimented, did research in their realm, and didn’t think to do research outside of their realm. It left me with a feeling of incompleteness. This is someone who knows a lot about EDS but it is not their life’s work.
Despite those downfalls- this book is still worth a read. I wrote down several rabbit holes to research and a list of things to implement to see if I can finally heal my POTS for good. The flip side of researching and taking perspective only within their realm is a refreshing take on EDS and finding patterns and connections that have been overlooked by other researchers.
If you’re completely new to this world, this is certainly a great place to start your own healing journey. I would not take this book as fact, but meaningful EDS research is *almost* non existent (shoutout to Tulane we love you!) so this is as advanced as you can get in 2025. I’m sure we’ll continue to learn and understanding will evolve and some things in here will likely be proven as missing the mark, but it’s a great launching pad to begin your own research and experiments and a general lens in which to view EDS (maybe not all cases of EDS, but certainly a large fraction). If nothing else I’m just really glad to see someone opening up *real* discussion about EDS for the first time.
Decided to round up to 4 stars ⭐️⭐️⭐️⭐️ simply because the information in this book does have the potential to get you your life back - experiment and see what works, but she nailed exactly what cured me several years ago. Take it all with a grain of salt, but at the end of the day this book has the potential to do a lot of good and give you a lot of great starting points for you to get your life back.
Happy healing!!!!
September 13, 2024
Read this book if you want to get health anxiety and be bored out of your mind. This book could have been written in 100 pages instead of 200 pages as I was able to get the gist of the book by skimming it within a days time. Not to mention, the book is a whole ad to get the reader to get treatment at the author's clinic (there was literally a coupon code for a product discount and multiple instances of promoting her chiropractic clinic). The book gives general health advice and approaches the diagnoses from an alternative medicine perspective like eat healthier and whatnot, as well as other advice, like "when possible, walk or sit outside with bare feet"??. There's also a lot of "in my opinion", "I believe", and other unfounded statements without the support of scientific evidence/research. Overall, a pinhole view of EDS/POTS diagnoses from one individual who is a chiropractor. I could go on but you could probably get better information by completing your own research via Google Scholar, PubMed, or another similar website.
Displaying 1 - 2 of 2 reviews