Recently went to see an ENT due to continued sinus infection issues. ENT told us that they have found that tonsils are an important part of our immune system and have T cells and so they don't like to remove them unless they are causing huge issues with breathing at night or the tonsils get so big that they block the throat off. What are your thoughts on this.
perhaps local anesthetic is a problem for EDS patients because of a methylation gene mutation issue? I had to ha e my wisdom teeth removed a few years ago ( and two extra teeth besides that ) so I could get braces, and they tried to give me laughing gas, which almost killed me. It did not work. I have EDS type III, and was tested for the MTHFR gene mutation, tested positive for two heterozygous copies of the mutation.
A lot of people with EDS have MTHFR gene mutations, but many with EDS do not, and many with MTHFR do not have EDS either (it's not a very rare mutation at all; up to 15% of white people in the US have it). So I think that it's more than MTHFR mutations are common, EDS or not, rather than MTHFR is at all related to EDS pathology.
I have a terrible time with anesthesia . I’m also a natural redhead which requires more sedation and pain medicine. I have a very strong pain tolerance and it sometimes is to my detriment.
My Opthamologist gave me eye drops (antibiotic and a dialator to act as a temp cast of sorts,) for a severe case of Iritis. I was given a very strict schedule for using the dropd and a strict tapering off schedule at the end of the drops therapy. Everything went extremely well.
I absolutely love how Dr Das uses knowledge and logic to process scenarios. I find this Soooo rare in Drs. Seems doctors are all on auto pilot regurgitating the limited scope of knowledge that they have gained .....
I had uveitis of the eyes got a tooth pulled around the same time ended up going blind for a week now I have a cyst in my sinuses apparently bc I began to have visual hallucinations seeing double and looked like the room was shaking very scary feeling at time doctors don't understand it I was told to go to a psychiatric doctor believe me I changed doctors just recently waiting for my appointment next week I just hope and pray I get a doctor to listen before it's to late like my sister just died last yr artery rupture in her tummy on her 17th colonoscopy she was 29 now I'm 29 I can't leave my mom and dad behind they can't lose another daughter and my kids are showing simliar symptoms as I had as a child with reflex sick all the time I just need prayers I'm just gonna pray about it that s all I can do
Sending prayers to you and your family. I have hEDS and possibly vascular EDS. I have hEDS and vascular EDS. All 4 of my children have symptoms of hEDS. One daughter is in very bad shape and I’m afraid I’m going to lose her. I’m typing this at 2 am because some nights I just can’t sleep because of all of the problems and fears associated with this disorder. It’s a journey for sure. Don’t give up your will to fight and help make advances in EDS treatment for those that come after us. My daughter is the sickest of them all and I worry so much about her future. I’ve had several vascular episodes that I won’t get into here as I don’t want to do’s myself. EDS is so difficult to live with. Ironically enough, my sickest daughter and I have terrible sinus problems even after repeated surgeries. That’s the tip of the iceberg at my house. Hang in there and reach out if you have any questions or need someone to talk to.
@@aspenenglish4976 I have uveitis I guess it is do to with the vascular EDS. I knew I had hEDS. I also have MS, lymphedema - very small person but something is wrong with the tiny structures. I am very high IQ was highly functional ADHD. after MS dx I had many steroid Injections at first - later found very enlarged adrenal. I already had extreme anxiety disorder. I fit every test. Even at my age 58, I do not have to take away any points for age. I have APS, a blood clotting disorder. I’m going to Cleveland in October for an imaging of the structures of my lymphatic system. I have scoliosis (significant). I work very hard to function and try to keep strength - no one would know - except now I do not drive anymore - my eyes go out of focus for a moment - everyday. No driving now. Had six eye surgeries. My sinuses on MRI look terrible but to everyone’s surprise I have no sinus problems and no allergy problems. I had my tonsils removed at age 3. I don’t have respiratory infections. I have had less than 30 headaches my entire life. Only 4 of those headaches before all these diagnosis 6 years ago. Never have colds or the flu since 1996 - but I do get flu shot now for past 5 years. My throat is irritated a lot. I went to a specialist for this. He said I have like a red irritated area like a singer. He is observing over time.
Sigh.... yes it is nice to have a Dr Das who has EDS speak here today but most of us cannot shop around for a good doctor. Most of us work full time for crappy wages and have crappy insurance. We are not rich and able to shop around for a good doctor.
This makes so much sense. I have always felt worse physically after fluoroquinines(and zithro almost kills me-palpitations are terrible!(I have Sphlenoid sinusitis so I have a lot of antibiotic experience) it is good to know about the local anesthetics. I have had injections and nerve blocks for occipital neuralgia and bulging discs and various arthritis issues and they have never worked. Its nice to be validated. I did wonder- is there a link between vestibular migraines and eds? I spend about 50% of the time I am awake with awful dizziness and nausea which nothing seems to help and I am interested in what you would suggest to a patient presenting with this and or the sphlenoid sinusitis.
#Collagen heals literally ketosis kept you alive. There are these conundrums medical science can't fix a phenotype that will over react to any fiber or vegetation consumed Any vegetables and any plant matter or derivatives should be avoided. #carnivoreCure @nutritionwithJudy #DrDominicDagostino #ketosis expert #DrDaleBrenesen fat #altzimers expert #DrDonaldLayman #protein expert #DrThomasSeyfried #cancer expert #DrJasonFung #intermitentfasting #DietDr #metabolicMind #meatheals #DrShawnBaker #carnivoreDiet #Revero #reindeerherdsman #transhumancy #regenerativeAgriculture #richardPerkins #dutchFarmers #savoryInstitute #charlieFoundation There are many experts trying to find the #properHumanDiet #DrKenBerry #LiesMyDoctorToldMe #DrBenBikman #whyWeGetSick #DrBoz #AnyWayYouCan #keto #DrRobertKiktz #Pcos #DrHoltz #biohackers even though the hackers describe these HITECH vitamins and substances they consume and they are pushing more plant based vegan eating MOST ALL the substances they use are beef byproduct derivatives . All those nutrients you will find in a piece of meat specially beef, bison or deer meats and from it internal organs of these animals especially the livers. #Phenotypes Type 1 diabetes, Gastroperisis, glaucoma Cancer, altzimers, brain tumors epilepsy multiple echlerosis ,muscular dystrophy, dysplasia etc etc. Specially when people find no solution it seems to be based on these anomalies of condition that no one can explain. It's been proven it's not in the human genetics but the nutrition is able to change gene expression and species specific nutrition is what will help these condition when they occur. The whole of the earth is a #fooddeserts and I'm sure the #fertileCrescent is misrepresented. People in deserts, forests, jungles, and frozen tundras and mountain tops must hunt herds of animals in order to survive. #AmericanIndianReservation #metabolicHealthSummit #ketoCon #LowCarbDownUnder #LowCarbUSA #TimFerris #PeterAttia biohackers #levels #pulse #longevityProject Good luck finding your solution. Just know that what heals your brain is also good for the body. God bless!
Are there any antibiotic options for people allergic to penicillin, clavulin and biaxin are also not options for me and I'm deathly ill with clindamycin 🤷 seems like my antibiotic options are very limited. I'm having nosebleeds and swelling in the pink bits of the inner eye. One side is much larger than the other when they are itchy especially. Large polyp on the left side, deviated septum, tonsils already removed as a teenager it's been a lifelong issue. Tonsils had sacs growing and recurring infection for years before they were removed.
I am allergic to everything! I had c diff from clindamycin use. It took a year to clear up. So I live like a girl in a bubble. I’ve had surgery twice and need it again.
He is a liar, he have lied to the entire community of ens, promoting his procedures. I went to his office had his so call safe procedure done, I have had major problems breathing, nerve damage which cause Nasal pain, teeth pain, and facial pain. Lied when I asked about the safety of his procedure, and follow up being free of charge. Only to be disabled by him, and after informing him of the damages he gave caused, him and his staff ignored me for months, eventually charged me for a follow to speak to him, for him to say sorry to hear that and to retry one of his procedures. Please stay away from him. He have had so many complaints to the medical state board. Please do not go anywhere close to his office
Thx 4 sharing this important information. God Bless Dr. Das and all at EDS Awareness!
Thank you for this informative presentation. This explains so much of what's going on with EDS and recurrent infections.
I was just diagnosed. There is no specialist in my area. I'm in mid Michigan. The only comfort is finally knowing why I've been suffering so long.
Thank you so much for sharing this video, Dr Das. Thank you for your generosity and good heart. God bless you!
Recently went to see an ENT due to continued sinus infection issues. ENT told us that they have found that tonsils are an important part of our immune system and have T cells and so they don't like to remove them unless they are causing huge issues with breathing at night or the tonsils get so big that they block the throat off. What are your thoughts on this.
Interesting point. Hopefully a clinician will answer.
Should i use flonase, an intranasal steroid, for my nasal valve collapse/ stenosis?
perhaps local anesthetic is a problem for EDS patients because of a methylation gene mutation issue? I had to ha e my wisdom teeth removed a few years ago ( and two extra teeth besides that ) so I could get braces, and they tried to give me laughing gas, which almost killed me. It did not work.
I have EDS type III, and was tested for the MTHFR gene mutation, tested positive for two heterozygous copies of the mutation.
A lot of people with EDS have MTHFR gene mutations, but many with EDS do not, and many with MTHFR do not have EDS either (it's not a very rare mutation at all; up to 15% of white people in the US have it). So I think that it's more than MTHFR mutations are common, EDS or not, rather than MTHFR is at all related to EDS pathology.
I have a terrible time with anesthesia . I’m also a natural redhead which requires more sedation and pain medicine. I have a very strong pain tolerance and it sometimes is to my detriment.
And Biocidin? To remove biofilms?
Why are inhaled antibiotics never prescripted for these patients? Or even antibiotic eye-drops?
My Opthamologist gave me eye drops (antibiotic and a dialator to act as a temp cast of sorts,) for a severe case of Iritis. I was given a very strict schedule for using the dropd and a strict tapering off schedule at the end of the drops therapy. Everything went extremely well.
I absolutely love how Dr Das uses knowledge and logic to process scenarios.
I find this Soooo rare in Drs.
Seems doctors are all on auto pilot regurgitating the limited scope of knowledge that they have gained .....
very interesting thank you for sharing
I had uveitis of the eyes got a tooth pulled around the same time ended up going blind for a week now I have a cyst in my sinuses apparently bc I began to have visual hallucinations seeing double and looked like the room was shaking very scary feeling at time doctors don't understand it I was told to go to a psychiatric doctor believe me I changed doctors just recently waiting for my appointment next week I just hope and pray I get a doctor to listen before it's to late like my sister just died last yr artery rupture in her tummy on her 17th colonoscopy she was 29 now I'm 29 I can't leave my mom and dad behind they can't lose another daughter and my kids are showing simliar symptoms as I had as a child with reflex sick all the time I just need prayers I'm just gonna pray about it that s all I can do
Sending prayers for you and your family!!
Sending prayers to you and your family. I have hEDS and possibly vascular EDS. I have hEDS and vascular EDS. All 4 of my children have symptoms of hEDS. One daughter is in very bad shape and I’m afraid I’m going to lose her. I’m typing this at 2 am because some nights I just can’t sleep because of all of the problems and fears associated with this disorder. It’s a journey for sure. Don’t give up your will to fight and help make advances in EDS treatment for those that come after us. My daughter is the sickest of them all and I worry so much about her future. I’ve had several vascular episodes that I won’t get into here as I don’t want to do’s myself. EDS is so difficult to live with. Ironically enough, my sickest daughter and I have terrible sinus problems even after repeated surgeries. That’s the tip of the iceberg at my house. Hang in there and reach out if you have any questions or need someone to talk to.
@@aspenenglish4976 I have uveitis I guess it is do to with the vascular EDS. I knew I had hEDS.
I also have MS, lymphedema - very small person but something is wrong with the tiny structures. I am very high IQ was highly functional ADHD. after MS dx I had many steroid Injections at first - later found very enlarged adrenal. I already had extreme anxiety disorder. I fit every test. Even at my age 58, I do not have to take away any points for age.
I have APS, a blood clotting disorder.
I’m going to Cleveland in October for an imaging of the structures of my lymphatic system. I have scoliosis (significant).
I work very hard to function and try to keep strength - no one would know - except now I do not drive anymore - my eyes go out of focus for a moment - everyday. No driving now. Had six eye surgeries.
My sinuses on MRI look terrible but to everyone’s surprise I have no sinus problems and no allergy problems.
I had my tonsils removed at age 3.
I don’t have respiratory infections.
I have had less than 30 headaches my entire life.
Only 4 of those headaches before all these diagnosis 6 years ago.
Never have colds or the flu since 1996 -
but I do get flu shot now for past 5 years.
My throat is irritated a lot.
I went to a specialist for this.
He said I have like a red irritated area like a singer. He is observing over time.
Did always have face pain.
I am having ICG imaging
Sigh.... yes it is nice to have a Dr Das who has EDS speak here today but most of us cannot shop around for a good doctor. Most of us work full time for crappy wages and have crappy insurance. We are not rich and able to shop around for a good doctor.
This makes so much sense. I have always felt worse physically after fluoroquinines(and zithro almost kills me-palpitations are terrible!(I have Sphlenoid sinusitis so I have a lot of antibiotic experience) it is good to know about the local anesthetics. I have had injections and nerve blocks for occipital neuralgia and bulging discs and various arthritis issues and they have never worked. Its nice to be validated. I did wonder- is there a link between vestibular migraines and eds? I spend about 50% of the time I am awake with awful dizziness and nausea which nothing seems to help and I am interested in what you would suggest to a patient presenting with this and or the sphlenoid sinusitis.
Brenda Waddle there is a link between EDS & migraines. Look into Dysautonomia re your Postural Orthostatic Tachycardia Syndrome (POTS)
#Collagen heals literally ketosis kept you alive. There are these conundrums medical science can't fix a phenotype that will over react to any fiber or vegetation consumed
Any vegetables and any plant matter or derivatives should be avoided.
#carnivoreCure @nutritionwithJudy
#DrDominicDagostino #ketosis expert
#DrDaleBrenesen fat #altzimers expert
#DrDonaldLayman #protein expert
#DrThomasSeyfried #cancer expert
#DrJasonFung #intermitentfasting
#DietDr #metabolicMind #meatheals
#DrShawnBaker #carnivoreDiet
#Revero #reindeerherdsman
#transhumancy #regenerativeAgriculture
#richardPerkins #dutchFarmers
#savoryInstitute #charlieFoundation
There are many experts trying to find the #properHumanDiet #DrKenBerry
#LiesMyDoctorToldMe
#DrBenBikman #whyWeGetSick
#DrBoz #AnyWayYouCan #keto
#DrRobertKiktz #Pcos
#DrHoltz #biohackers even though the hackers describe these HITECH vitamins and substances they consume and they are pushing more plant based vegan eating MOST ALL the substances they use are beef byproduct derivatives .
All those nutrients you will find in a piece of meat specially beef, bison or deer meats and from it internal organs of these animals especially the livers.
#Phenotypes
Type 1 diabetes, Gastroperisis, glaucoma
Cancer, altzimers, brain tumors epilepsy multiple echlerosis ,muscular dystrophy, dysplasia etc etc. Specially when people find no solution it seems to be based on these anomalies of condition that no one can explain. It's been proven it's not in the human genetics but the nutrition is able to change gene expression and species specific nutrition is what will help these condition when they occur. The whole of the earth is a #fooddeserts and I'm sure the #fertileCrescent is misrepresented.
People in deserts, forests, jungles, and frozen tundras and mountain tops must hunt herds of animals in order to survive.
#AmericanIndianReservation
#metabolicHealthSummit
#ketoCon #LowCarbDownUnder
#LowCarbUSA #TimFerris
#PeterAttia biohackers #levels
#pulse #longevityProject
Good luck finding your solution. Just know that what heals your brain is also good for the body. God bless!
Are there any antibiotic options for people allergic to penicillin, clavulin and biaxin are also not options for me and I'm deathly ill with clindamycin 🤷 seems like my antibiotic options are very limited. I'm having nosebleeds and swelling in the pink bits of the inner eye. One side is much larger than the other when they are itchy especially. Large polyp on the left side, deviated septum, tonsils already removed as a teenager it's been a lifelong issue. Tonsils had sacs growing and recurring infection for years before they were removed.
I am allergic to everything! I had c diff from clindamycin use. It took a year to clear up. So I live like a girl in a bubble. I’ve had surgery twice and need it again.
This man is an absolute monster. He’s a liar and have ruined my life I’m praying I can get my life back
As an EDS patient looking for answers, it would be helpful to have more information if you could send me a DM please.
He is a liar, he have lied to the entire community of ens, promoting his procedures. I went to his office had his so call safe procedure done, I have had major problems breathing, nerve damage which cause Nasal pain, teeth pain, and facial pain. Lied when I asked about the safety of his procedure, and follow up being free of charge. Only to be disabled by him, and after informing him of the damages he gave caused, him and his staff ignored me for months, eventually charged me for a follow to speak to him, for him to say sorry to hear that and to retry one of his procedures. Please stay away from him. He have had so many complaints to the medical state board. Please do not go anywhere close to his office