These two videos have given me insight, hope, validation, and direction like no other dysautonomia resource has. Thank you!❤️ I feel like my 17 medical puzzle has been solved!!!!
Thank you! Thank you! Thank you!... I could go on. I have been struggling and advocating for my 16-year-old for years. It started as a syncope diagnosis, then migraines, then anxiety/depression issues, then hEDS, then long-haul mono.... getting to those diagnoses was not easy and treatment is a while other story. And now you basically present her life in a PowerPoint. I know we still do not have answers, and treatment is ongoing, but at least we know we are not alone. Someone gets it! There is hope.
It makes me feel hopeful to see that you’re beginning to connect the dots. I’m someone who has been through the treatment/surgery gambit (brainstem decompression + fusion + feeding tube etc) and have had some stage 4 symptoms since childhood. I gave up on most treatments because I could not attain balance with the side effects and my body was very stressed out trying all the different meds over the course of years. I have found a few things to improve my quality of life and I am now in acceptance of living in stage 3/4 and making the best of it for now. I have my good days, and I am grateful for that. A mostly carnivore diet, low toxin lifestyle, regular binder (clinoptilolite is my favorite) supplementation and working on opening all of my different detox pathways over time is what inches me toward healing. And of course working on my mental health/trauma doesn’t hurt 😉 My 2 cents I think soon it will be evident to the entire medical community that all of this is related to toxic burden. Our electro magnetic field, medications, air, water and food are being poisoned by many things and we are all swimming in it. This disease process is the manifestation of that. I know it deep in my being and I’ve seen it in lots of other “trifecta” patients. I even have several childhood neighbors that are getting similar dx as well as ALL of our children. Turns out our neighborhood environment was heavily contaminated. I really respect the work you’re doing and I’m excited to see the future of this. I was a patient of Dr Afrin back when he was working at the University of Minnesota and he was one of the first physicians to spend time + actively listen to me. He asked important questions that I had never been asked before and it was so nice to feel seen. He helped steer me down the course I’m on now and I’ll never forget that!
These diseases are being caused by childhood vaccines. Their symptoms are triggered by the factors you list. Children who have not been childhood vaccinated do not get these dysautonomia diseases and symptoms.
Looking for a friend with Pentad for the beta blocker you recommended. Her beta blocker keeps having to be increased. Thank you for making this video. As a friend, I need to know what's going on, too. The information, truthfully, is alarming - yet knowledge is what I prefer.
Not sure why he never mentions that Hereditary alpha tryptasemia can cause all of these things. Ilc had dr vadas speaking about it at a previous conference. Also no one i have ever talked to has “grown out” of dysautonomia. Theres also no mention of the genetic defects that can cause these syndromes.
My dysautonomia improved as I neared 30. I still have POTS but my symptomology is much different than it was in my teen and young adult years. NOW I have more autoimmune issues and MCAS related symptoms. Additionally. I went from hyper mobile with regards to EDS to now being suddenly very stiff with stiff musculature and nearly no flexion whatsoever in my lumbar spine. I have AS and that’s more problematic symptom wise than EDS or POTS so that definitely shifted and rang true in my case specifically.
This is really useful. The progress through the phases aligns with my partner's journey in the year since long covid, but he experiences bradycardia when he feels his worst. In the early days, his HR would rocket, but now it doesn't seem to kick in enough. As if his PNS is overactive or SNS is reduced? Can't seem to find any info on this.
I'm super curious too! Came here from pt 1 vid. My autonomic neurologist doesn't know dosing. Just does Mestinon (blocks re-uptake I think)...I want the building blocks rather! Haven't watched whole vid yet. Also have slight concern if Choline may increase TMAO?...heart disease in my dad's side of fam.
These two videos have given me insight, hope, validation, and direction like no other dysautonomia resource has. Thank you!❤️
I feel like my 17 medical puzzle has been solved!!!!
Thank you! Thank you! Thank you!... I could go on. I have been struggling and advocating for my 16-year-old for years. It started as a syncope diagnosis, then migraines, then anxiety/depression issues, then hEDS, then long-haul mono.... getting to those diagnoses was not easy and treatment is a while other story. And now you basically present her life in a PowerPoint. I know we still do not have answers, and treatment is ongoing, but at least we know we are not alone. Someone gets it! There is hope.
It makes me feel hopeful to see that you’re beginning to connect the dots.
I’m someone who has been through the treatment/surgery gambit (brainstem decompression + fusion + feeding tube etc) and have had some stage 4 symptoms since childhood. I gave up on most treatments because I could not attain balance with the side effects and my body was very stressed out trying all the different meds over the course of years. I have found a few things to improve my quality of life and I am now in acceptance of living in stage 3/4 and making the best of it for now. I have my good days, and I am grateful for that. A mostly carnivore diet, low toxin lifestyle, regular binder (clinoptilolite is my favorite) supplementation and working on opening all of my different detox pathways over time is what inches me toward healing. And of course working on my mental health/trauma doesn’t hurt 😉
My 2 cents
I think soon it will be evident to the entire medical community that all of this is related to toxic burden. Our electro magnetic field, medications, air, water and food are being poisoned by many things and we are all swimming in it. This disease process is the manifestation of that. I know it deep in my being and I’ve seen it in lots of other “trifecta” patients. I even have several childhood neighbors that are getting similar dx as well as ALL of our children. Turns out our neighborhood environment was heavily contaminated.
I really respect the work you’re doing and I’m excited to see the future of this. I was a patient of Dr Afrin back when he was working at the University of Minnesota and he was one of the first physicians to spend time + actively listen to me. He asked important questions that I had never been asked before and it was so nice to feel seen. He helped steer me down the course I’m on now and I’ll never forget that!
Another of my favorite supplements that I forgot to mention is Fulvic/Humic Acid. I like the Coseva brand as well as Ion Biome.
These diseases are being caused by childhood vaccines. Their symptoms are triggered by the factors you list. Children who have not been childhood vaccinated do not get these dysautonomia diseases and symptoms.
Yay - this came up in my feed. No "golden" pentad! Really appreciated in the community of orphan illnesses! Thank you, AJ!
Goddamn. There's a name. Where can I find help?
Looking for a friend with Pentad for the beta blocker you recommended. Her beta blocker keeps having to be increased. Thank you for making this video. As a friend, I need to know what's going on, too. The information, truthfully, is alarming - yet knowledge is what I prefer.
I know this is an older comment, but you are a great friend for doing your own research about your friend's condition. It means the world to them!
This explains a lot about electrically sensitive people too!
Can we get dosages on the Choline and Pantethine please?
Not sure why he never mentions that Hereditary alpha tryptasemia can cause all of these things. Ilc had dr vadas speaking about it at a previous conference. Also no one i have ever talked to has “grown out” of dysautonomia. Theres also no mention of the genetic defects that can cause these syndromes.
My first thoughts as well
My dysautonomia improved as I neared 30. I still have POTS but my symptomology is much different than it was in my teen and young adult years. NOW I have more autoimmune issues and MCAS related symptoms. Additionally. I went from hyper mobile with regards to EDS to now being suddenly very stiff with stiff musculature and nearly no flexion whatsoever in my lumbar spine. I have AS and that’s more problematic symptom wise than EDS or POTS so that definitely shifted and rang true in my case specifically.
Again, such a bummer that he wasn't given more time to go into things the way he wanted. Still, terrific info!
Glutamine makes me anxious and depressed. Is there another way to address the gut lining?
My Dr put me on a calcium channel blocker. Amlodipine 2.5 mg. Is this similar to a beta blocker?
This is really useful. The progress through the phases aligns with my partner's journey in the year since long covid, but he experiences bradycardia when he feels his worst. In the early days, his HR would rocket, but now it doesn't seem to kick in enough. As if his PNS is overactive or SNS is reduced? Can't seem to find any info on this.
Same, though mine isn't from long covid. I'm bradycardic, as well.
Does anyone know the dose of Choline and Pantethine supplement please?
I'm super curious too! Came here from pt 1 vid. My autonomic neurologist doesn't know dosing. Just does Mestinon (blocks re-uptake I think)...I want the building blocks rather! Haven't watched whole vid yet. Also have slight concern if Choline may increase TMAO?...heart disease in my dad's side of fam.
Is there any news on the benefit of the recommended supplements?
What about dizziness and dysfunction upon sitting ?
Excellent. Thank you
How do we reach this doctor?
Gut health!!!!
STOMACH ACID
What do you mean stomach acid please?
Oh yes GERD