I really think we are on to something here. This is a comment I posted on another video a few months ago: "Could this be a piece of the puzzle, as we know Lipedema is classed as a connective tissue disorder ? After being diagnosed with a vitamin B9 Folate deficiency I decided to look at the possible symptoms. I discovered that many people with this deficiency have the MTHFR gene mutation and have a problem converting the synthetic form of folate known as folic acid. When you take a folic acid supplement, MTHFR converts the folic acid into L-methylfolate, also called 5-methyltetrahydrofolate (5-MTHF). This is the biologically active form of folate; in other words, it's the type of folate our cells can use. However, if you have an MTHFR gene mutation, your body might have a hard time making this conversion." What is exciting for those with Lipedema is there is new research that has found a link between Vitamin B9 and connective tissue disorders. This is the study : 'Could a vitamin deficiency cause 'double-jointedness' and hypermobile Ehlers-Danlos syndrome? Source: Tulane University - April 2023 'New research identifies genetic cause for hypermobility and hypermobile Ehlers-Danlos syndrome, a novel discovery that may also, for the first time, allow medical professionals to diagnose and treat the connective tissue disorders. Researchers at Tulane University School of Medicine have linked hypermobility to a deficiency of folate -- the natural form of vitamin B9 -- caused by a variation of the MTHFR gene. Those with this genetic variant can't metabolize folate, which causes unmetabolized folate to accumulate in the bloodstream. The folate deficiency may prevent key proteins from binding collagen to the extracellular matrix. This results in more elastic connective tissue, hypermobility, and a potential cascade of associated conditions.'
@Maddy-qd8eg thanks for sharing the Tulane research! Really interesting! I've never been diagnosed as hypermobile, but I'm definitely more flexible than average and have been told I "over bend" my knees. Another thing to keep an eye on as I restock my body's folate stores with a form it can use. It'll be interesting to see if anything changes over the next few months.
I found about this some months ago when i listen to the you tube channel EO Nutrition. My two aunts on my mother side and my grandma have this as well as me and my daughter. All my life i have suffer because of this and because my daughter suffering I was desperate to found answer WHY? After many years of searching and analyzing I come out with hypothesis ( I am not a doctor ) I put myself and my daughter to the regiment i come out with AND IT WORK ! Like magic and it have scientific explanation to. So here it is (most likely) : This is a gene mutation that prevent B vitamins to be fully utilized by the body. And a specially vitamin B1. Lack of B1 will: 1 prevent your body from turning carbohydrates to energy ( YOU WILL STORE IT AS FAT ) 2muscle in capillaries will have hard time contract and will start leaking blood plasma to surrounding tissue ( EDEMA ) 3. to support all this water weight and fat, body will start developing fibrotic tissue ( this is why lipedema fat is different . 4. brain fog etc. all B1 deficiency. 5. Lipedema is painful ... well B1 help build nerve endings so if you don't have myelin sheath on nerve endings its hurts . 6 . Your thyroid gland need it as well and cant produce hormone this is why your body is always tired .( low thyroid hormone - low metabolism) 7. Without it you became estrogen dominant (more estrogen - more fat ) 8. Man don't have it because they naturally have more testosterone (this dos not mean that thy are not affected they just distribute fat in different way but they have similar symptoms ) 9. You will produce less gastric juices so you will not digest properly there for you will get small intestine overgrow with pathogens. When you have pathogens overgrowth in intestines and good one whipped out your intestines will start leaking LPS to blood and tissues (think inflammation). 10. there is also sodium kidney connection and your body will hold the water like sponge (you where right when you feel that you will drink glass of water and you gain weight) 11.because you cant convert food to energy and your brain and body think its starving it will signal for more fuel (this is why you are always hungry)And off course there is more to this but this is in the nut shell .O and why carnivore work ? - because you don't use as much B1 to convert carbs to energy and meat have lots of B1 so you reverse problem. I am vegetarian and my daughter to . What we did we listen to EO nutrition channel and use mega doses of BENFOTHIAMINE and METHYLATED B COMPLEX in the beginning we also use sublingual liposomal B complex (to give ourselves immediate bust ) We also use MAGNESIUM BISGLICYNATE ,ZINC and other MICRO Minerals . Now we are starting ENZYMES to break down all this fibrotic tissue : high doses of SERRAPEPTASE and other preolitic enzymes . We also use compression garments to support and give shape to our ,,NEW" legs. GOOD LUCK LADIES !!! ITS POSSIBLE!!!
@@brittanycutshaw89 We are feeling amazing brain fog gone! Super energy! We are like different people ! AND LEGS - WOW THEY ARE CHANGING EVERY DAY ( FOR BETTER) + weight loss - amazing!
I live in Seattle, and am currently so depressed about my journey. I have not been diagnosed, and finding someone to do that has been a truly unfortunate experience. My primary care who has all the literature does not feel comfortable. My lymphatic therapist tells me yes you have it but no I cannot diagnose you . These two medical professionals are the only ones who willing to talk to me about my situation. Meanwhile the Lipedema has progressed into my upper arms, and causes me a dull painful ache that never leaves. I have educated myself enough to know I must get help, but I am currently stymied. I signed up with Lipedema Foundation , informative but couldn’t help with finding a person to help me. I appreciate all the content you put out , I will request a referral to a nutritionist… maybe that person could find some of the answers. I cannot afford out of pocket costs , so hopefully i won’t have that as an obstacle. I’ve been meaning to ask you …. a while ago you recommended a incline pillow to elevate your legs, I’ve not been able to find that info again, I just remembered it was over a 100.00 dollars . Did I hallucinate that ? Thank you for reading and for sharing your experience.
@asuncionhatch9644 you are in the struggle phase of this journey but keep at it! Once you find your care team and start putting together a self-care protocol you'll start to feel better. The Lipedema Foundation provider directory is fairly new so they are still building it. Here is another one to try that lists several providers in Seattle lipedemaproject.org/lipedema-lipoedema-lipodem-provider-directory/ Be warned, though, that the providers listed here are submitted by patients and some doctors might not know they are listed... and respond poorly. There are also a lot of facebook groups for lipedema and one of the regional ones would be a great places to ask for doctor recommendations. The good news is that you don't necessarily need a diagnosis unless you are trying to get a pneumatic pump of have liposuction. Everything else can be purchased over the counter and done on your own. Check out my playlist on conservative treatments to get some inspiration: ua-cam.com/play/PLGrmXtIzhSGJ8yMVrvzsS0IlDdZisLuKS.html Elevating your legs is a great place to start! This is the leg pillow I have: amzn.to/4eHGXVL It was designed by a vein surgeon to get everything in the proper position to drain most efficiently. There are different sizes and you buy them according to your height so check the sizing information.
mine is in my upper arms full of very painful little lumps.....i feel so much sympathy for you....I'm in Ireland...it is useless for lipidema and lymphoedema....absolutely useless....check out Natural Health Solutions Dr Mellissa Gallagher....UA-cam Channel....my advice....just use ordinary pillows if you can't afford special...also email the company and simply ask for a gift of a free or reduced cost pillow....can't hurt! Bob and Brad always do free offers on their channel....i'll add a link
Thank you for this information. I have diagnosed myself with lipedema, and based on the stages, I have been at stage 2 for years. My primary is hoping that it's celiac sprue. He didn't even know what lipedema was until I explained it to him. He didn't do a physical exam. We talked through all of my symptoms until he felt better about his potential diagnosis. My gynecologist says I likely have it but that I should contact a rheumatologist for an official diagnosis. Both of these men could have diagnosed it. Our overpriced system of "healthcare" is a joke.
@laurieminor3031 ugh! Most of us have been there! The good news it that you only really need a formal diagnosis if you want to get liposuction surgery or a pneumatic pump. Pretty much everything is a nutritional or over-the-counter thing you can experiment with on your own. Stick with the things that work. Save your time/money on the ones that don't. Check out my conservative treatments playlist for some inspo to get you started: ua-cam.com/play/PLGrmXtIzhSGJ8yMVrvzsS0IlDdZisLuKS.html Sending big hugs! Trust your instincts. You got this!
@hebrewmama it might be worth checking out the book anyway since it is currently free. Both lipedema and lymphedema are lymphatic disorders so some similar things apply to both. You'll be able to read through the symptoms lists for the various tests and see what feels applicable. Sending big hugs
My doctor (a naturopath) recently switched me from prednisone to a methylated form, in the hopes that it would work better since I have the MTHFR C677T mutation. This gene partially explains my autism and autoimmune disorder as well. Doctors seem to forget basic biology, but all the drugs we end up taking after a couple decades of malnutrition and toxic exposures probably decreases any incentive to get back to the basics. Thank you for this important video and sharing resources!
@sarahjensen2473 I hope the new methylated form is helping! It sounds like you have a good naturopath. My nutritionist is more like a naturopath and the contrast to my regular doctor is shocking. She actually wants my body to function at it's best - my doctor is just waiting for it to break. Shake my head... Sending you big hugs and good vibes
Thank you for sharing all of this with us - you are such a delightful and intelligent person and a pleasure to watch. Sending all the best to you from Australia. 🧚🏻♀️❤️🐝
I have found some relief more recently. My ankles have slimmed down a bit. I have stopped milk and cream and started on cbd oil. But because I started abstaining from dairy and cbd at the same time I can't tell which is the most helpful. But I cheated this weekend and I'm all waterlogged again. 😭 so no cheating anymore. I have heard about this MTHR before and i think you've hit the nail on the head.
@jartotable I'm so glad you are getting some relief! And, yes, sometimes it takes some cheating to learn the hard way what's helping. Keep and it! It sounds like you are on the right path
So glad I found your channel. I’m a 52yo woman with 3 children. I have suspected for some time I have the mthfr gene of some type in my family, along with Ehlers Danlos Syndrome (EDS). I have now identified I likely have lipodema as did my mother. I first came across suspecting mthfr as my daughter had autoimmune multiple health issues as a baby (food allergies, eczema, signs of autism). Later my son was dx with autism spectrum disorder (ASD) and my 3rd son I suspect has both EDS and ADHD. Yet another genetic issue I am suspicious of is the fragile x syndrome, which is also linked to having co morbidities with ASD. My father had Parkinson’s Disease which I now realise could potentially have been undx fragile X ataxia. Fx is highly associated with lower IQ and Autism in boys. Though varies in severity of presentation as the extent of the mutation also varies. However, his father also had PD which is confusing as it is always passed down to sons from the mother not the father. The mothers are usually carriers while the sons are more likely to express the symptoms I haven’t had proper testing of any of these but have a lot of symptoms that have got harder to manage with age. I wonder if one condition can be a cause of the others or we have just been particularly unlucky getting all three. I do think MTHFR is linked to ASD and probably ADHD. And that those conditions can then be made worse due to exposure to environmental toxins (heavy metals, glyphosate, pesticides) and this is due to the inability to generate enough glutathione (anti-oxidant) and high levels of homocysteine along with a deficiency of B vitamins. The addition of synthetic folic acid to flour which is now done in western countries is also a problem as it blocks the folate receptors and prevents them from absorbing natural folate (vit B9) creating a deficiency. So we end up more susceptible to brain and gut inflammation and toxin buildup and vit B deficiencies which all can create neurological issues such as ASD, ADHD, and chronic anxiety and depression. I have noted that in social media forums that ADHD seems quite prevalent among people with EDS. And I am wondering now if lipedema is more likely to be caused by having a connective tissue disorder like EDS - or if they all may have their root cause in MTHFR. If they aren’t related I am not sure why having one genetic mutation (eg MTHFR) might be connected in some way to also having EDS or if its just an unfortunate coincidence having all of these in the one family. In any case they all seem to have culminated in my family. But I do notice there are a lot of co morbidities mentioned in the different social media groups I’m in (ADHD, MTHFR etc). Sorry about the brain dump of info. All these conditions have made my life and my children’s lives difficult and I am trying to find solutions so we can find ways to try to manage some of the symptoms to make our lives easier! They all are quite hidden conditions and relatively unknown as well so there is little understanding or knowledge about them in the general public or even the medical profession.
@lkr2025 thanks for sharing your experience! It's going to help a lot of people with the same sorts of questions. Your comment about flour being enriched with folic acid is interesting. I wonder if that's another reason going keto and kicking carbs made such a big difference for me. 🤔 You might find the First Look report from the Lipedema Foundation interesting: www.lipedema.org/registry-first-look-report It contains self-reported co-morbidities of other lipedema patients. If you suspect you have lipedema, I'd also encourage you to take the survey for their Registry so your data can be included in future reports and shared with researchers trying to better understand our unique bodies. Sending big hugs to you and your family ♥♥
@@sturdywoman thank you yes I will definitely do the survey! Yes I have wondered that about the low carb connection as well. Probably there are multiple benefits from reducing carbs and refined flours in particular. Xx
You are definitely on the right track. I Have EDS and lipidema and was told by my CIRS doctor that the connective tissue disorders are linked. The MTHFR mutation is probably in there as well. I will be ordering the MTHFR testing from life extensions soon. They have almost anything that you could possibly want for blood testing and you can take to them on the phone and get help with the ordering, then they can send it to lab corp for the blood draws and email you the results. I was able then to see how the CIRS had affected me and have the doctor explain everything. My husband and I went ahead and started taking the methylated b vitamins and stopped all grains. Everything that is "enriched" as far as all flour in the US is sprayed with a lab created Folic acid which isn't natural and can't be used by people with the MTHFR mutation, for those that don't know. CIRS aka Chronic Inflammatory response syndrome is also a gene mutation that doesn't allow the person to detox mold, but I suspect also other toxins. There also aren't many doctors that know about CIRS either. I would highly recommend stopping all grains, sugars and anything that turns into sugar. Doing this has helped some slowing the progression of everything I have. We basically don't buy anything packaged or that has multiple ingredients except cured meats. Most people that have ever been diagnosed with "chronic fatigue", fibromyalgia and some other issues are really kinda under the CIRS umbrella. Check out Nutrition with Judy for CIRS info. I think all of these mutations are from toxins that are added to our foods and chemicals we have been exposed too. We are like the canary's in the coal mine and many people don't realize they even have issues, they think a lot of it is aging and it's not. Hope this helps
The life extensions MTHFR testing also has the COMT gene mutation testing that I believe is linked to Autism etc. I don't know if they go into the explanation as she said above.
Medical testing is critical. I strongly suspect everyone with lipoedema has the MTHFR A1298C variant. The problem is they are not being tested for it. Regulating B12 in particular is an absolute game changer. ps: if you have MTHFR A1298C, check out what adenomyosis is.
@@anitacarmon-crawford6245 Check out this Italian study that looked at MTHFR and lipedema. Interestingly, they had people with MTHFR in both the lipedema and non-lipedema groups: www.europeanreview.org/article/31407
Always love your videos! I am a fellow lipedema lady. My testing shows I likely have the MTHFR gene as well (low folate/B12 & high cysteine) despite eating ketovore for years. Was getting B12 shots. Thank you for showing your methylated vitamin B. My doc suggested this but not a name brand. My question is why the SAMe? What benefit is it suppose to provide? Thank you!❤
@julief6044 thank you for your kind words! Yep, high homocysteine can be a sign and it's important to get it down since it can be a risk factor for heart disease. I added the SAMe because after six months on the B Supreme my folate was still quite low. It has a good dose of that in a methylated form. SAMe help promote the conversation of homocysteine to cysteine which can help lower levels. You can read waaaay more details here: www.livingwithmthfr.org/genetic-education/amino-acids/s-adenosyl-methionine-same
You talked about identifying food sensitivities. Is there a resource you utilized to help identify? All I know for certain is I feel better when I eat primarily single ingredient animal foods; burger patties and heavy cream are my go to staple foods. That being said, it would be socially easier and have fewer adverse consequences (mood, bloating etc) if I knew of a few things I could throw in the mix from time to time. Also, thank you so very much for sharing your experiences. Your channel's content is very helpful. 😊
@hfrench71 have you found my video on food sensitivities? ua-cam.com/video/7q-RczR23RM/v-deo.html I totally agree any variety we can find the easier... and more enjoyable! Thank you for being here and for your kind words
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Most doctors aren't interested in lypodeama and to get a diagnosis is virtually impossible on NHS. Uk. So in the end I went to a private consultant London for a diagnosis, apparently I have had it years, and a private endocrinologist. My metabolism is slow too so losing weight as well as coping with lypodeama is hard work even on tirzepatide. One Dr told me that lypodeama doesn't exist so that is why I had to go private. Soyouare helping a lot of People, thank you.
@wendyshirley9091 bravo to you for being persistent until you got what you needed! We truly have to be our own best advocates. Sending big hugs and good vibes! I hope you are feeling well
If you don’t mind me saying, it sounds like perhaps you should be going to a different primary care doctor. Your nutritionist, on the other hand, sounds like a winner.
@ellenhubbard3717 as much as I give him a hard time he was the one who sent me on this whole lipedema journey when he sent me to a vein doctor. I was furious with him about that because I thought I just needed physical therapy. Over the years I've come to appreciate that he will push me on things because it means he cares. I should start looking though because he's very old :D
Thanks for the interesting video. I believe as a doctor, I must have studied what that gene mutation does. I never test it myself. It is very often being tested when women have suffered thrombosis or emboly. Generally, it has no meaning apart of anticoagulation after the labor. But because you asked about laboratoy... how about hypercholesterolemia? I have that as a vegeterian for over 15 years. So i would not necessarily do Keto! Do you have some information on that?
@Elina1011 great questions! From what I've read and what I've heard from my nutritionist, the tides are shifting on cholesterol and total cholesterol is no longer seen as giving enough information - the sizes of the different particles matters too. If you download the book you'll see it recommends also testing Apolioportein A1 and Apolipoportein B ratio. There is also a lot of interesting information on cholesterol here: cholesterolcode.com/
Hi Rebekah im so happy having found your videos. Have been watching them all week you gave me new hope to try again. I received my compression leggings czsarus. They fit well, dont hurt. But i can barely move having my compression on, is this normal? The compression shirt unfortunately didnt fit me i tried it on pulling a muscle 😂 I have emailed you, lots of love x
@samsensation786 yes, I have an email that I think is from you from July 1! I will do my best to get back to you soon. The compression question is interesting. What do you mean "I can barely move"? Did you order black or another color? In my experience the black are more rigid and... rough? Mine generally feel soft and supportive and don't restrict my movement. I wonder if you might need a different size? Arm compression can be trick to put on - especially if you got the shift :D Did you see the tips for donning in my Arm Compression video? ua-cam.com/video/CFfyPjjnGZg/v-deo.html
@@sturdywomanthe black k1 leggings yes. I got the largest size available. I can barely move lol its so tight. Yes the video where you show how to put the bolero and shirt on. I cant do it
I think the legging isnt right for me, although ive worn it there are many loose threads already on the inside and at the bottom of my feet. The stitching is loose. Going to contact zssalus for help on this😊
This is interesting, I had multiple miscarriages and found that my progesterone was too low and have lipedema, EDS, CIRS, Hashimotos, once I did a compounded progesterone suppository for the first trimester I had no issues carrying my son.
@vidyaroy1627 and @gathercreativelivewithleslie8340 thank you for sharing your experience! Miscarriages have been identified as one sign of MTHFR. Limited research has been done with it and lipedema, but I suspect we'll see more in the near future.
It's so frustrating that moat medical doctors do not care about MTFHR and ignore when you bring it to their attention. I was diagnosed by a functional medicine doctor but of course that isn't covered by insurance. Having a really hard time finding a doctor that understands or even considers MTHFR, lipedema, and Ehlers-Danlos.
@JessicaWhite21 say that again! It's so frustrating to have your experience of your own body constantly ignored and denied. And, yes, having to spend money out of pocket because the people who can treat you aren't covered by insurance. SIGH. Have you seen the Lipedema Foundation's Provider Directory www.lipedema.org/provider-directory or the Lipedema Project directory lipedemaproject.org/lipedema-lipoedema-lipodem-provider-directory/ Maybe there is someone near you in there
@mpt9442 I'm glad you got the book! Unfortunately NY is one of a handful of states that closely restrict at-home testing. Of course you can go to your doctor. A first step would be to check your homocysteine. If that isn't high you probably don't need to worry about MTHFR. Does NY allow things like 23andMe or are those restricted too? You can use your raw data from the ones that test the entire thing to determine your status. Sending good vibes
@jackiemorrison2661 have you seen my video "Do I have lipedema?" that describes some of the common symptoms? ua-cam.com/video/R1GwreFPN9E/v-deo.html Sending big hugs - you CAN feel better
I never had any lab testing for this. According to my docs in Chicago, its because Im fat and need to lose the weight and it will all go away. This was in 2009
I've been hearing that genes can be activated and/or changed through the life cycle based on things like stress and traumas. I'm not a doctor but it's maybe not necessarily true that it's been like that since birth.
@JennifersModesto science, especially genetic science, is changing daily, isn't it? I too have heard people talking about experiences and environmental factors possibly switching genes on and off. I can say, though, that my energy levels have changed from anything in recent memory!
@susane49461 there are quite a few sites who say they can help you determine your MTHFR status from your 23andMe raw data. This is one example www.geneticlifehacks.com/mthfr-c677t/ but you may also want to check others. Good luck - and happy half sister! I've always wished I had a sister
@@sturdywomanThat is interesting. May be complete coincidence (probably is) but my lipedema obviously was passed down from my mother, and her mother (judging by our legs and body type). My grandmother was and only child. My mother had one brother. I had one brother (and always wanted a sister). I hoped for two girls so my daughter could have a sister, but had two sons). I’ve always joked for some reason on that side of the family we seem cursed not to have any sisters 🤷♀️
Your video title sounds as though you are saying that you are the person who scientifically discovered the MTFHR gene mutation. Just wanted to point that out. Don't mean to be snarky at all. Thought you may want to change the wording a bit.
I noticed you didn’t have your hormones tested. Estrogen and testosterone need to be checked. DNA testing when you use 23 and Me health version will let you know if you have the MTHFR gene mutation.
@stephieGilley good point! That will be a separate video. My nutritionist recommended a test but it didn't fit my budget at the time. I plan to take it soon, though, and will let everyone know how it goes when I do. And, yes, you are right. If you have done broader genetic testing you can often find your MTHFR status in that data
@anuyajoshi2411 I've started getting that question a lot! No, I haven't taken any glp1 drugs (or had surgery) and have only used the conservative treatments I describe on the channel. Keto has been a game changer for me. I know this was discussed at the Fat Disorders Research Society (FDRS) conference earlier this year. Those videos should be available on the FDRS channel later this year.
I really think we are on to something here.
This is a comment I posted on another video a few months ago:
"Could this be a piece of the puzzle, as we know Lipedema is classed as a connective tissue disorder ?
After being diagnosed with a vitamin B9 Folate deficiency I decided to look at the possible symptoms. I discovered that many people with this deficiency have the MTHFR gene mutation and have a problem converting the synthetic form of folate known as folic acid.
When you take a folic acid supplement, MTHFR converts the folic acid into L-methylfolate, also called 5-methyltetrahydrofolate (5-MTHF). This is the biologically active form of folate; in other words, it's the type of folate our cells can use. However, if you have an MTHFR gene mutation, your body might have a hard time making this conversion."
What is exciting for those with Lipedema is there is new research that has found a link between Vitamin B9 and connective tissue disorders.
This is the study :
'Could a vitamin deficiency cause 'double-jointedness' and hypermobile Ehlers-Danlos syndrome?
Source: Tulane University - April 2023
'New research identifies genetic cause for hypermobility and hypermobile Ehlers-Danlos syndrome, a novel discovery that may also, for the first time, allow medical professionals to diagnose and treat the connective tissue disorders.
Researchers at Tulane University School of Medicine have linked hypermobility to a deficiency of folate -- the natural form of vitamin B9 -- caused by a variation of the MTHFR gene.
Those with this genetic variant can't metabolize folate, which causes unmetabolized folate to accumulate in the bloodstream. The folate deficiency may prevent key proteins from binding collagen to the extracellular matrix. This results in more elastic connective tissue, hypermobility, and a potential cascade of associated conditions.'
@Maddy-qd8eg thanks for sharing the Tulane research! Really interesting! I've never been diagnosed as hypermobile, but I'm definitely more flexible than average and have been told I "over bend" my knees. Another thing to keep an eye on as I restock my body's folate stores with a form it can use. It'll be interesting to see if anything changes over the next few months.
I found about this some months ago when i listen to the you tube channel EO Nutrition. My two aunts on my mother side and my grandma have this as well as me and my daughter. All my life i have suffer because of this and because my daughter suffering I was desperate to found answer WHY? After many years of searching and analyzing I come out with hypothesis ( I am not a doctor ) I put myself and my daughter to the regiment i come out with AND IT WORK ! Like magic and it have scientific explanation to. So here it is (most likely) : This is a gene mutation that prevent B vitamins to be fully utilized by the body. And a specially vitamin B1. Lack of B1 will: 1 prevent your body from turning carbohydrates to energy ( YOU WILL STORE IT AS FAT ) 2muscle in capillaries will have hard time contract and will start leaking blood plasma to surrounding tissue ( EDEMA ) 3. to support all this water weight and fat, body will start developing fibrotic tissue ( this is why lipedema fat is different . 4. brain fog etc. all B1 deficiency. 5. Lipedema is painful ... well B1 help build nerve endings so if you don't have myelin sheath on nerve endings its hurts . 6 . Your thyroid gland need it as well and cant produce hormone this is why your body is always tired .( low thyroid hormone - low metabolism) 7. Without it you became estrogen dominant (more estrogen - more fat ) 8. Man don't have it because they naturally have more testosterone (this dos not mean that thy are not affected they just distribute fat in different way but they have similar symptoms ) 9. You will produce less gastric juices so you will not digest properly there for you will get small intestine overgrow with pathogens. When you have pathogens overgrowth in intestines and good one whipped out your intestines will start leaking LPS to blood and tissues (think inflammation). 10. there is also sodium kidney connection and your body will hold the water like sponge (you where right when you feel that you will drink glass of water and you gain weight) 11.because you cant convert food to energy and your brain and body think its starving it will signal for more fuel (this is why you are always hungry)And off course there is more to this but this is in the nut shell .O and why carnivore work ? - because you don't use as much B1 to convert carbs to energy and meat have lots of B1 so you reverse problem. I am vegetarian and my daughter to . What we did we listen to EO nutrition channel and use mega doses of BENFOTHIAMINE and METHYLATED B COMPLEX in the beginning we also use sublingual liposomal B complex (to give ourselves immediate bust ) We also use MAGNESIUM BISGLICYNATE ,ZINC and other MICRO Minerals . Now we are starting ENZYMES to break down all this fibrotic tissue : high doses of SERRAPEPTASE and other preolitic enzymes . We also use compression garments to support and give shape to our ,,NEW" legs. GOOD LUCK LADIES !!! ITS POSSIBLE!!!
This is super helpful info! I would love to hear about the results and how you are feeling after a bit of time. Thank you!
@@brittanycutshaw89 We are feeling amazing brain fog gone! Super energy! We are like different people ! AND LEGS - WOW THEY ARE CHANGING EVERY DAY ( FOR BETTER) + weight loss - amazing!
I live in Seattle, and am currently so depressed about my journey. I have not been diagnosed, and finding someone to do that has been a truly unfortunate experience. My primary care who has all the literature does not feel comfortable. My lymphatic therapist tells me yes you have it but no I cannot diagnose you . These two medical professionals are the only ones who willing to talk to me about my situation. Meanwhile the Lipedema has progressed into my upper arms, and causes me a dull painful ache that never leaves. I have educated myself enough to know I must get help, but I am currently stymied. I signed up with Lipedema Foundation , informative but couldn’t help with finding a person to help me. I appreciate all the content you put out , I will request a referral to a nutritionist… maybe that person could find some of the answers. I cannot afford out of pocket costs , so hopefully i won’t have that as an obstacle. I’ve been meaning to ask you …. a while ago you recommended a incline pillow to elevate your legs, I’ve not been able to find that info again, I just remembered it was over a 100.00 dollars . Did I hallucinate that ? Thank you for reading and for sharing your experience.
@asuncionhatch9644 you are in the struggle phase of this journey but keep at it! Once you find your care team and start putting together a self-care protocol you'll start to feel better. The Lipedema Foundation provider directory is fairly new so they are still building it. Here is another one to try that lists several providers in Seattle lipedemaproject.org/lipedema-lipoedema-lipodem-provider-directory/ Be warned, though, that the providers listed here are submitted by patients and some doctors might not know they are listed... and respond poorly. There are also a lot of facebook groups for lipedema and one of the regional ones would be a great places to ask for doctor recommendations. The good news is that you don't necessarily need a diagnosis unless you are trying to get a pneumatic pump of have liposuction. Everything else can be purchased over the counter and done on your own. Check out my playlist on conservative treatments to get some inspiration: ua-cam.com/play/PLGrmXtIzhSGJ8yMVrvzsS0IlDdZisLuKS.html Elevating your legs is a great place to start! This is the leg pillow I have: amzn.to/4eHGXVL It was designed by a vein surgeon to get everything in the proper position to drain most efficiently. There are different sizes and you buy them according to your height so check the sizing information.
@@sturdywoman thank you so much, I deeply appreciate the info… especially the possible finding of a provider and I didn’t hallucinate the pillow !!! 😊
Have you tried seeing if someone will take you on as a study subject at Swedish, @asuncionhatch9644?
mine is in my upper arms full of very painful little lumps.....i feel so much sympathy for you....I'm in Ireland...it is useless for lipidema and lymphoedema....absolutely useless....check out Natural Health Solutions Dr Mellissa Gallagher....UA-cam Channel....my advice....just use ordinary pillows if you can't afford special...also email the company and simply ask for a gift of a free or reduced cost pillow....can't hurt! Bob and Brad always do free offers on their channel....i'll add a link
www.youtube.com/@BobandBrad
Thank you for this information. I have diagnosed myself with lipedema, and based on the stages, I have been at stage 2 for years. My primary is hoping that it's celiac sprue. He didn't even know what lipedema was until I explained it to him. He didn't do a physical exam. We talked through all of my symptoms until he felt better about his potential diagnosis. My gynecologist says I likely have it but that I should contact a rheumatologist for an official diagnosis. Both of these men could have diagnosed it. Our overpriced system of "healthcare" is a joke.
@laurieminor3031 ugh! Most of us have been there! The good news it that you only really need a formal diagnosis if you want to get liposuction surgery or a pneumatic pump. Pretty much everything is a nutritional or over-the-counter thing you can experiment with on your own. Stick with the things that work. Save your time/money on the ones that don't. Check out my conservative treatments playlist for some inspo to get you started: ua-cam.com/play/PLGrmXtIzhSGJ8yMVrvzsS0IlDdZisLuKS.html Sending big hugs! Trust your instincts. You got this!
I’m glad they have all this stuff for lipedema now if they could only do something for lymphedema 😞
I have both lipedema & lymphedema. I hope researchers find answers soon.
@hebrewmama it might be worth checking out the book anyway since it is currently free. Both lipedema and lymphedema are lymphatic disorders so some similar things apply to both. You'll be able to read through the symptoms lists for the various tests and see what feels applicable. Sending big hugs
My doctor (a naturopath) recently switched me from prednisone to a methylated form, in the hopes that it would work better since I have the MTHFR C677T mutation. This gene partially explains my autism and autoimmune disorder as well. Doctors seem to forget basic biology, but all the drugs we end up taking after a couple decades of malnutrition and toxic exposures probably decreases any incentive to get back to the basics.
Thank you for this important video and sharing resources!
@sarahjensen2473 I hope the new methylated form is helping! It sounds like you have a good naturopath. My nutritionist is more like a naturopath and the contrast to my regular doctor is shocking. She actually wants my body to function at it's best - my doctor is just waiting for it to break. Shake my head... Sending you big hugs and good vibes
Wow! You are a wealth of information. Another place to check.
@helenguilford3136 thank you!
Thank you for all the resources you provided.
@liap1293 thank YOU for being here! I hope the resources help you on your journey ♥
Thank you for sharing all of this with us - you are such a delightful and intelligent person and a pleasure to watch.
Sending all the best to you from Australia.
🧚🏻♀️❤️🐝
@Donna.Walmsley101 thank you for your kind words 🥰 I am so glad it's helpful ♥♥
you are looking fab!!!
@anuyajoshi2411 thank you! 🥰 Even more importantly, I feel fab! ♥♥
I have found some relief more recently. My ankles have slimmed down a bit. I have stopped milk and cream and started on cbd oil. But because I started abstaining from dairy and cbd at the same time I can't tell which is the most helpful. But I cheated this weekend and I'm all waterlogged again. 😭 so no cheating anymore. I have heard about this MTHR before and i think you've hit the nail on the head.
@jartotable I'm so glad you are getting some relief! And, yes, sometimes it takes some cheating to learn the hard way what's helping. Keep and it! It sounds like you are on the right path
So glad I found your channel. I’m a 52yo woman with 3 children. I have suspected for some time I have the mthfr gene of some type in my family, along with Ehlers Danlos Syndrome (EDS). I have now identified I likely have lipodema as did my mother. I first came across suspecting mthfr as my daughter had autoimmune multiple health issues as a baby (food allergies, eczema, signs of autism). Later my son was dx with autism spectrum disorder (ASD) and my 3rd son I suspect has both EDS and ADHD. Yet another genetic issue I am suspicious of is the fragile x syndrome, which is also linked to having co morbidities with ASD. My father had Parkinson’s Disease which I now realise could potentially have been undx fragile X ataxia. Fx is highly associated with lower IQ and Autism in boys. Though varies in severity of presentation as the extent of the mutation also varies.
However, his father also had PD which is confusing as it is always passed down to sons from the mother not the father. The mothers are usually carriers while the sons are more likely to express the symptoms
I haven’t had proper testing of any of these but have a lot of symptoms that have got harder to manage with age.
I wonder if one condition can be a cause of the others or we have just been particularly unlucky getting all three. I do think MTHFR is linked to ASD and probably ADHD. And that those conditions can then be made worse due to exposure to environmental toxins (heavy metals, glyphosate, pesticides) and this is due to the inability to generate enough glutathione (anti-oxidant) and high levels of homocysteine along with a deficiency of B vitamins. The addition of synthetic folic acid to flour which is now done in western countries is also a problem as it blocks the folate receptors and prevents them from absorbing natural folate (vit B9) creating a deficiency. So we end up more susceptible to brain and gut inflammation and toxin buildup and vit B deficiencies which all can create neurological issues such as ASD, ADHD, and chronic anxiety and depression.
I have noted that in social media forums that ADHD seems quite prevalent among people with EDS. And I am wondering now if lipedema is more likely to be caused by having a connective tissue disorder like EDS - or if they all may have their root cause in MTHFR. If they aren’t related I am not sure why having one genetic mutation (eg MTHFR) might be connected in some way to also having EDS or if its just an unfortunate coincidence having all of these in the one family. In any case they all seem to have culminated in my family. But I do notice there are a lot of co morbidities mentioned in the different social media groups I’m in (ADHD, MTHFR etc).
Sorry about the brain dump of info. All these conditions have made my life and my children’s lives difficult and I am trying to find solutions so we can find ways to try to manage some of the symptoms to make our lives easier! They all are quite hidden conditions and relatively unknown as well so there is little understanding or knowledge about them in the general public or even the medical profession.
@lkr2025 thanks for sharing your experience! It's going to help a lot of people with the same sorts of questions. Your comment about flour being enriched with folic acid is interesting. I wonder if that's another reason going keto and kicking carbs made such a big difference for me. 🤔 You might find the First Look report from the Lipedema Foundation interesting: www.lipedema.org/registry-first-look-report It contains self-reported co-morbidities of other lipedema patients. If you suspect you have lipedema, I'd also encourage you to take the survey for their Registry so your data can be included in future reports and shared with researchers trying to better understand our unique bodies. Sending big hugs to you and your family ♥♥
@@sturdywoman thank you yes I will definitely do the survey! Yes I have wondered that about the low carb connection as well. Probably there are multiple benefits from reducing carbs and refined flours in particular. Xx
You are definitely on the right track. I Have EDS and lipidema and was told by my CIRS doctor that the connective tissue disorders are linked. The MTHFR mutation is probably in there as well. I will be ordering the MTHFR testing from life extensions soon. They have almost anything that you could possibly want for blood testing and you can take to them on the phone and get help with the ordering, then they can send it to lab corp for the blood draws and email you the results. I was able then to see how the CIRS had affected me and have the doctor explain everything. My husband and I went ahead and started taking the methylated b vitamins and stopped all grains. Everything that is "enriched" as far as all flour in the US is sprayed with a lab created Folic acid which isn't natural and can't be used by people with the MTHFR mutation, for those that don't know. CIRS aka Chronic Inflammatory response syndrome is also a gene mutation that doesn't allow the person to detox mold, but I suspect also other toxins. There also aren't many doctors that know about CIRS either. I would highly recommend stopping all grains, sugars and anything that turns into sugar. Doing this has helped some slowing the progression of everything I have. We basically don't buy anything packaged or that has multiple ingredients except cured meats. Most people that have ever been diagnosed with "chronic fatigue", fibromyalgia and some other issues are really kinda under the CIRS umbrella. Check out Nutrition with Judy for CIRS info. I think all of these mutations are from toxins that are added to our foods and chemicals we have been exposed too. We are like the canary's in the coal mine and many people don't realize they even have issues, they think a lot of it is aging and it's not. Hope this helps
The life extensions MTHFR testing also has the COMT gene mutation testing that I believe is linked to Autism etc. I don't know if they go into the explanation as she said above.
I'm homozygous A1298c. I like to call it the 'MoTHerFu#$eR gene mutation'. 😂
@itllbesuzanarchy that's exactly how I say it in my head every single time 😆
That's what we call it too.
@@susane49461That’s literally what it does - it f*ks you up. And it f*ks mother’s up especially!! (52 yo mother of 3 here)
Medical testing is critical. I strongly suspect everyone with lipoedema has the MTHFR A1298C variant. The problem is they are not being tested for it. Regulating B12 in particular is an absolute game changer. ps: if you have MTHFR A1298C, check out what adenomyosis is.
@@anitacarmon-crawford6245 Check out this Italian study that looked at MTHFR and lipedema. Interestingly, they had people with MTHFR in both the lipedema and non-lipedema groups: www.europeanreview.org/article/31407
Always love your videos! I am a fellow lipedema lady. My testing shows I likely have the MTHFR gene as well (low folate/B12 & high cysteine) despite eating ketovore for years. Was getting B12 shots. Thank you for showing your methylated vitamin B. My doc suggested this but not a name brand. My question is why the SAMe? What benefit is it suppose to provide? Thank you!❤
@julief6044 thank you for your kind words! Yep, high homocysteine can be a sign and it's important to get it down since it can be a risk factor for heart disease. I added the SAMe because after six months on the B Supreme my folate was still quite low. It has a good dose of that in a methylated form. SAMe help promote the conversation of homocysteine to cysteine which can help lower levels. You can read waaaay more details here: www.livingwithmthfr.org/genetic-education/amino-acids/s-adenosyl-methionine-same
You talked about identifying food sensitivities. Is there a resource you utilized to help identify? All I know for certain is I feel better when I eat primarily single ingredient animal foods; burger patties and heavy cream are my go to staple foods. That being said, it would be socially easier and have fewer adverse consequences (mood, bloating etc) if I knew of a few things I could throw in the mix from time to time.
Also, thank you so very much for sharing your experiences. Your channel's content is very helpful. 😊
@hfrench71 have you found my video on food sensitivities? ua-cam.com/video/7q-RczR23RM/v-deo.html I totally agree any variety we can find the easier... and more enjoyable! Thank you for being here and for your kind words
@@sturdywoman I'ma watch it now :)
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Most doctors aren't interested in lypodeama and to get a diagnosis is virtually impossible on NHS. Uk. So in the end I went to a private consultant London for a diagnosis, apparently I have had it years, and a private endocrinologist. My metabolism is slow too so losing weight as well as coping with lypodeama is hard work even on tirzepatide.
One Dr told me that lypodeama doesn't exist so that is why I had to go private.
Soyouare helping a lot of People, thank you.
@wendyshirley9091 bravo to you for being persistent until you got what you needed! We truly have to be our own best advocates. Sending big hugs and good vibes! I hope you are feeling well
If you don’t mind me saying, it sounds like perhaps you should be going to a different primary care doctor. Your nutritionist, on the other hand, sounds like a winner.
@ellenhubbard3717 as much as I give him a hard time he was the one who sent me on this whole lipedema journey when he sent me to a vein doctor. I was furious with him about that because I thought I just needed physical therapy. Over the years I've come to appreciate that he will push me on things because it means he cares. I should start looking though because he's very old :D
Great info. Please, can you tell me how and where I can get the in home tests??
@maryfrancis2328 this is the test I used: amzn.to/4cZw2VP You can also find everything I recommend here: www.amazon.com/shop/sturdywoman Good luck!
Thanks for the interesting video. I believe as a doctor, I must have studied what that gene mutation does. I never test it myself. It is very often being tested when women have suffered thrombosis or emboly. Generally, it has no meaning apart of anticoagulation after the labor.
But because you asked about laboratoy... how about hypercholesterolemia? I have that as a vegeterian for over 15 years. So i would not necessarily do Keto! Do you have some information on that?
@Elina1011 great questions! From what I've read and what I've heard from my nutritionist, the tides are shifting on cholesterol and total cholesterol is no longer seen as giving enough information - the sizes of the different particles matters too. If you download the book you'll see it recommends also testing Apolioportein A1 and Apolipoportein B ratio. There is also a lot of interesting information on cholesterol here: cholesterolcode.com/
Hi Rebekah im so happy having found your videos. Have been watching them all week you gave me new hope to try again. I received my compression leggings czsarus. They fit well, dont hurt. But i can barely move having my compression on, is this normal?
The compression shirt unfortunately didnt fit me i tried it on pulling a muscle 😂
I have emailed you, lots of love x
@samsensation786 yes, I have an email that I think is from you from July 1! I will do my best to get back to you soon. The compression question is interesting. What do you mean "I can barely move"? Did you order black or another color? In my experience the black are more rigid and... rough? Mine generally feel soft and supportive and don't restrict my movement. I wonder if you might need a different size? Arm compression can be trick to put on - especially if you got the shift :D Did you see the tips for donning in my Arm Compression video? ua-cam.com/video/CFfyPjjnGZg/v-deo.html
@@sturdywomanthe black k1 leggings yes. I got the largest size available. I can barely move lol its so tight. Yes the video where you show how to put the bolero and shirt on. I cant do it
I think the legging isnt right for me, although ive worn it there are many loose threads already on the inside and at the bottom of my feet. The stitching is loose. Going to contact zssalus for help on this😊
I have this same gene mutation got it checked when i had reoccurring miscarriages. I also have lipodema.
This is interesting, I had multiple miscarriages and found that my progesterone was too low and have lipedema, EDS, CIRS, Hashimotos, once I did a compounded progesterone suppository for the first trimester I had no issues carrying my son.
@vidyaroy1627 and @gathercreativelivewithleslie8340 thank you for sharing your experience! Miscarriages have been identified as one sign of MTHFR. Limited research has been done with it and lipedema, but I suspect we'll see more in the near future.
It's so frustrating that moat medical doctors do not care about MTFHR and ignore when you bring it to their attention. I was diagnosed by a functional medicine doctor but of course that isn't covered by insurance. Having a really hard time finding a doctor that understands or even considers MTHFR, lipedema, and Ehlers-Danlos.
@JessicaWhite21 say that again! It's so frustrating to have your experience of your own body constantly ignored and denied. And, yes, having to spend money out of pocket because the people who can treat you aren't covered by insurance. SIGH. Have you seen the Lipedema Foundation's Provider Directory www.lipedema.org/provider-directory or the Lipedema Project directory lipedemaproject.org/lipedema-lipoedema-lipodem-provider-directory/ Maybe there is someone near you in there
I was able to download the book. Unfortunately, the test kit isn't available in NY. Do you have alternatives to recommend?
@mpt9442 I'm glad you got the book! Unfortunately NY is one of a handful of states that closely restrict at-home testing. Of course you can go to your doctor. A first step would be to check your homocysteine. If that isn't high you probably don't need to worry about MTHFR. Does NY allow things like 23andMe or are those restricted too? You can use your raw data from the ones that test the entire thing to determine your status. Sending good vibes
I think I have lipedema.. I too have the Mthfr mutation
@jackiemorrison2661 have you seen my video "Do I have lipedema?" that describes some of the common symptoms? ua-cam.com/video/R1GwreFPN9E/v-deo.html Sending big hugs - you CAN feel better
👍👍👍👍👍
I never had any lab testing for this. According to my docs in Chicago, its because Im fat and need to lose the weight and it will all go away. This was in 2009
mine got worse when i lost weight.
I've been hearing that genes can be activated and/or changed through the life cycle based on things like stress and traumas. I'm not a doctor but it's maybe not necessarily true that it's been like that since birth.
@JennifersModesto science, especially genetic science, is changing daily, isn't it? I too have heard people talking about experiences and environmental factors possibly switching genes on and off. I can say, though, that my energy levels have changed from anything in recent memory!
I had the 23 and Me DNA test. ( Hapy half sister ) and later the company says I Do Not have that gene mutation. Do you trust that source?
@susane49461 there are quite a few sites who say they can help you determine your MTHFR status from your 23andMe raw data. This is one example www.geneticlifehacks.com/mthfr-c677t/ but you may also want to check others. Good luck - and happy half sister! I've always wished I had a sister
@@sturdywomanThat is interesting. May be complete coincidence (probably is) but my lipedema obviously was passed down from my mother, and her mother (judging by our legs and body type). My grandmother was and only child. My mother had one brother. I had one brother (and always wanted a sister). I hoped for two girls so my daughter could have a sister, but had two sons). I’ve always joked for some reason on that side of the family we seem cursed not to have any sisters 🤷♀️
No more needles. 😅
:D
Your video title sounds as though you are saying that you are the person who scientifically discovered the MTFHR gene mutation. Just wanted to point that out. Don't mean to be snarky at all. Thought you may want to change the wording a bit.
I noticed you didn’t have your hormones tested. Estrogen and testosterone need to be checked. DNA testing when you use 23 and Me health version will let you know if you have the MTHFR gene mutation.
@stephieGilley good point! That will be a separate video. My nutritionist recommended a test but it didn't fit my budget at the time. I plan to take it soon, though, and will let everyone know how it goes when I do. And, yes, you are right. If you have done broader genetic testing you can often find your MTHFR status in that data
Thank you: have you ever used glp1 agonists in your weight loss journey in any form even lowest dose please??
@anuyajoshi2411 I've started getting that question a lot! No, I haven't taken any glp1 drugs (or had surgery) and have only used the conservative treatments I describe on the channel. Keto has been a game changer for me. I know this was discussed at the Fat Disorders Research Society (FDRS) conference earlier this year. Those videos should be available on the FDRS channel later this year.