I have been struggling with different degrees of illness for a number of years. I've been misunderstood, brushed off, misdiagnosed and now finally diagnosed with Sjogren's. As I try to find my way through the maze of lack of information from doctors, info (and some conflicting) through search engines, lectures & books, amidst my brain fog & fatigue, I suddenly came to the realisation that if I can't easily find and at times comprehend this information, then there must be others out there struggling too! So, I decided to make this channel, for people like me, who might feel a little alone with Sjogren's. At this point, I definitely don't have all the answers. Therefore, this channel is more about bringing you on my journey, where I will share my thoughts, struggles, facts that I come across, and share what works and doesn't work for me. I will most likely vent at times but at the same time I also hope to make this space a place for comfort, positivity and encouragement too.
Anyone struggling with fatigue and neurological symptoms, gut problems etc, consider B1 of course, but also consider mold exposure. Mold chews through B1 and other nutrients in the body, infects and inflames the entire nervous system in some people.. It can cause MS symptoms, extreme fatigue, autonomic nervous system dysfunction, neuropathy, breathing problems, all sorts of gut problems etc. It can mimic B1 deficiency, and directly cause a B1 deficiency. Mold creates a much higher demand on B1 and a bunch of other nutrients like copper, zinc, iodine, molybdenum, selenium etc. In my experience from being mold toxic, B1 has been one of the main nutrients to recover faster.
Hi i have fibro and fatigue. I took magnesium glycinate 550mg for 3 nights, was working good but had low bp today n terrible fatigue, could it be bcz of magnesium or just a fibro thing? Will soon try B1 also.
As promised, these are some of Beyond Sjogren’s testimonials: www.beyondsjogrens.com/article/mandy-testimonial www.beyondsjogrens.com/article/angie-testimonial (This one is with me!) www.beyondsjogrens.com/article/raha-programme-testimonial There are more written ones on the Beyond Sjogren’s website too. Free consultation with Jeremy www.beyondsjogrens.com/booking-calendar/introductory-phone-consultation-free?ref=mob_header If you haven’t watched part 1 and 2 of this chat please do! Part 1- ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-_v9NafLr8Kc.htmlsi=9aX2ykgbo75qmlOM Part 2- Healing from Sjogren’s ! Getting my life back. Am I ‘cured’!? ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-W4_euxlYDtE.html Sending everyone lots of love and wishing you a happy weekend! 💕
@@latharamanujan3074 vitamin d3 is great but you are right high doses long term can be very damaging. Definitely talk with your doctor and do regular blood tests. But happy it’s helping you!
Hi me again. I didnt notice until your were in the sun. Is nose swollen both sides? 95% of nose symptons are caused by fungus/mold according to @knowthecause on youtube. He reccomends an anti fungals instead of antibiotics.
Hi! My nose gets swollen because I have nasal polyps and if I’m near allergens or eat any the polyps swell up. I have had operations to have them removed and the last time I was very careful so they wouldn’t come back but unfortunately I had to live somewhere I was allergic to and they came back. At this point an operation would keep them away for a few years but I’m just not ready for an operation. Too worried it will make me fatigued again. So I’m waiting… Saying all that I will check the RU-vid as you never know it might help some of it! Thank you!
Make sure your B vitamins are methylated, not the synthetic form which is bad for you!!! It should say Folate (methyltetrahydrofolate) NOT folic acid and also B12 should say methlycobalamin NOT cyanocobalamin. Lots of research also shows that high doses of Vitamin D also helps with fatigue and other chronic illnesses.
@@tanialopez8067 Hi Tania! That’s a really good idea. I can totally understand the social aspect. I was thinking for me, because even P/T is too much to maybe volunteer at the local library or thrift store as long as I can do something like 2 hours.. or local schools to read to children or something.. I shall see! But definitely keep me updated with your p/t job search. 🤞🙏
Yes! York test is one of the most accurate. I’m allergic to cow’s milk too but a few other things, some I had no idea about. Definitely feel different too after taking them out if my diet. Like you say, ‘super charger’!
Hi. Im new to the b1 game. Def helping lots. Cooked food has low b1. Im experimenting with juicing fruits n veg. Really helps too. All my chronic fatigue came after an antibiotic. 4 years of trying to get out if this hole lol. Antibiotics are mold ... and i believe the body uses all its vitamins n minerals trying to get rid of the antibiotic mold.
Hi Jonny! I’m so sorry to hear about your cfs. Antibiotics are definitely bad. Glad the b1 is helping a lot. I have found that there’s need for a combination of things. For me, just b1 wasn’t doing it but a combination of different vitamins, minerals, lifestyle changes, and diet change have really helped.
@mysjogrensjourney yea I'm nearly there I think. Been through nearly every vitamin lol. Just like sending out tips that might help other ppl. Celery juice 500ml a day was good for me. Then lots of grapes instead of milk. No dairy no gluten helps lots. B vitamins. Magnesium. 3 colonics was very impressive also lol. The chlorine dioxide water purifier helps me but that's not a mineral. It's more of a bug and antibiotic remover. Nice to see your video. I'll do one someday on my story too. Jonny. Belfast
@@jonnyhonda Thank you for sharing all that’s helped. I have been following a protocol from a functional medicine practitioner and my Cfs has mainly gone. Yes, definitely do make a video. We all need each other’s support!
I have no idea I’m afraid, but I recommend you see a certified functional medicine practitioner if you are not having any luck with your doctors. Hope that will help.
@@mysjogrensjourney in my country no one knows about b1 I am severe deficient in b12 and vitamin d. I do test by my self doctors never ask me to do any test I am know taking vitamin d 5000iu with k2 100mcg magnesium glycinate 240mg I want to start b1 can I direct start with 300mg benfotiamine plz any advice
Google Eliot Overton, he is the expert on vitamin B1. He says you should take mega dose of b1, and there are more forms of b1, namely Benfothiamine, and TTFD Allithiamine. Google, or search on RU-vid. But watch the videos from Eliot Overton on RU-vid! Good luck. God bless you 🙏🏻
0:01 I am 67 1/2.....CF symptoms since young teen, long before there was even a name for it....but, may have started with horrible acne that was treated with multiple rounds of antibiotics (RN mother practically worshipped doctors - they could do no wrong!).... And other factors....multiple, never ending the hits just kept on coming/snowballing.... But I've been labeled as "not living up to my potential", "not ambitious", "always tired", etc. Just a way of life for me....been to so many doctors who took my money, gaslit me....said, "Some people just don't have as much energy as others." 'Eff them!!!! And the horse they rode in on!!! Just recently started watching B1 videos - not sure how I missed this info, since some of it has been on YT for several, several years.... Some promising results....wouldn't you know I might find a solution when most of my life is in the rear view mirror. Guess it's a God-thing.....I'm sure I would not have learned to trust in God as much....especially in these ominous times.....
Thanks soo much, Vickie! ❤️💕💕💕 I’ll do a meditation in my next video so we can do it together! I’ll start with a simple intro one. And I’ll talk about the app I use as it’s the best for me so far and it’s free for the first year (at least is with my code!) and you can stop it before they charge you the next year. I’ll record and post that video this week . 🙏
I think I mentioned in one of my comments that "The vagus nerve, also known as the vagal nerves, are the main nerves of your parasympathetic nervous system. This system controls specific body functions such as your digestion, heart rate and immune system" Gargling is the one of safest and easiest ways to activate it.
I keep wanting to talk about the vagus nerve again. I’ve talked about it in an older video. Thank you for mentioning it though. You are quite right! And yes with the gargling! For some reason I find I’m sticking to meditation whereas I couldn’t with activating vagus nerve even though I know it’s so simple!
Raha, this video was a beautiful and uplifting escape. 🌼 Walking barefoot on the grass and daisies, with the lovely shots of flowers and the Robin resting nearby, was such a perfect metaphor for connecting with nature and taking time to slow down. 🦋 It's inspiring to see how you continue to find and share these moments of peace and beauty despite what you've faced this past month. 💪 I noticed you're reading Christopher Isherwood - what an interesting choice! 📚 His life was fascinating. It was also wonderful to see you enjoying the car show on Saville Row 🚗, experiencing live music 🎶, and the food you had with your daughter looked absolutely delicious 🍽 These fleeting joyous moments are so important, and it's a reminder to all of us not to miss out on them. The outro with Al Green's cover of 'Let's Stay Together' was the perfect touch to end the video on a high note. 🎵 Thank you for sharing these beautiful snippets of your life and for continuously spreading positivity and hope to those dealing with Sjogren's Syndrome and Chronic Fatigue. 💚
I have had severe chronic fatigue for 8+ years. I also was a weekend binge drinker for 10+ years but I am now 12+ months completely sober. I think my years of drinking caused it. I have had my blood platelets checked, thyroid, b12, and my organs checked, a sleep study and EVERYTHING was normal. The only thing I havent had checked yet was my vitamins/minerals and my hormones, which i will soon hopefully. I recently just ordered a few supplements which I will list. I have ordered Vitamin D2+K2, B1, magnesium and collagen powder! I am hoping and praying those resolve my issues. I have severe chronic fatigue plus a little depression and constipation (tmi) lol. Although I dont bc i have to force myself to get up for work, i could sit on the couch 24 hours a day. I do take walks an exercise and i am in good physical shape (not overweight but not bony). For years I have thought man this severe fatigue has to be from some severe medical condition (cancer or something like that). I am gonna be mad at myself if it ends up being just vitamins but i will also be happy if the fatigue goes away. I know alcohol strips the body of vitamins and nutrients so it is highly likely whats wrong with me. How are you doing mam? I also wanted to add, not to be mean or anything but that candy in your mouth sucking it every 30 seconds is absolutely horrid to listen to. Super annoying. There is nothing wrong with constructive criticism. Its so bad I am gonna just end this comment now bc i gotta exit the video, i can not listen to your sucking festivities no longer
Thank you! 🙏❤️ and yes, I thought to it might be nice, especially the music and nature. 🙏💚💚🎶🎶. I don’t get to do things like these often. I hadn’t been to a car show since 2019 because of health so I’m so happy I made it. I thought I have put so much energy into hospitals and packing etc, let me put some energy to nice things!
My goodness, I'm sorry you've had such a rough month. Its heartbreaking that after doing so well now a new health issue. Praying you, your mom & daughter are feeling better soon. 💜💙🩵🩷❤️🩹
Thanks soo much, Vickie. ❤️❤️❤️ I really hope it’s all because I’ve overdone it but I’ll get the test result tomorrow and see. I’ve notice my cortisol levels are a lot lower than last year but I’ll know properly tomorrow.
Yeah I mean I’ve heard this happen to so many but hadn’t happened to me until now. The guy who worked in the hospital said this is an every night occurrence!! Crazy they won’t have police out if they know it happens every single night!
Wow, your post is truly inspiring. It's amazing to see how you've learned to manage with Sjogren's over the years. Your resilience and positivity really shine through in everything you do, and it's clear that you approach life with such a strong and uplifting spirit. The photoshoot at Kenwood House looked absolutely stunning, and the photos are gorgeous! You have an incredible talent for capturing beauty and emotion in your work. I admire your courage in sharing your story and the challenges you face. By doing so, you not only raise awareness but also offer hope and support to others going through similar experiences. Your openness and creativity will make a tangible difference in so many lives, showing that even in the face of adversity, it's possible to find joy and create beauty. Keep shining and inspiring us all with your journey and your art. 💖
Awww thank you sooo much for your kind words! I am actually speechless! But thank you so much. Much appreciated. Your comment makes me feel good about making these videos so thank you for that. 😭❤️🤣
Oh my goodness! Loved your beautiful photo shoot! All the pretty flowers. Your ideas are awesome! Yes, I do get nightmares when not doing so good. Please rest rest rest. ❤💜💙🩵🩷
Thank you! ❤️ Fran and I worked really well together. I was really pleased. ❤️🌸 And thank you. I’m resting more than I was which is helping but still not enough plus going through another health issue atm. Video coming up on that as soon as I can! Hope you’re ok and resting too. 🤗 🥰❤️❤️❤️
Hello hope you’re having a great day I am also on the Sjogren’s journey as well as many more such as IBS celiac disease fibromyalgia it has definitely been a journey I hope you have a wonderful rest of your day :-)
Hi Lorrie! Thank you so much for watching and commenting! You are right about a journey! I can’t have gluten but my celiac test was negative. Nevertheless, it really messes my whole system. I have been diagnosed with fibromyalgia too though for me, i wonder if it’s basically part of Sjogren’s. I really hope you have a wonderful rest of your day too. We’ve got this! ☺️🙏❤️
Wow, watching this video was truly inspiring! Despite facing the challenges of Sjogren's Syndrome, you managed to tackle a move all on your own and even found the time to support your mom with her hospital appointment. Your strength of mind and compassion towards others shines through brightly in every frame. It's incredible how you turned what could have been a daunting experience into such a positive and uplifting video. Keep shining your light and inspiring others with your resilience and kindness! ❤
Has consuming eggs caused you any specific health issues or are you avoiding them just because of the information you found about eggs and autoimmunity? Thanks!
Hi there! I’m not eating eggs because of the article and actually recently found I have an intolerance to egg yolk. I’ve never noticed any bad reactions to it at all though and I sure ate a lot of eggs!! I have no idea if the articles that mention it are right but I thought it best to avoid it just in case. I hope that helps! 😊
Thank you so much 🙏. She’s ok and we’re doing everything so she gets better.xx And I’m so happy you love my vlogs and find them relaxing. 🙏 You’ve made my day! ❤️ I wasn’t sure how they’d be received.
I love your intro! Yummy pizza. Hopefully you'll be able get lots of rest, moving is so hard & Sjogren'a on top of that, even more rough. Hope your new place works out well. 💜💙🩵🩷
Really enjoyed your vlog. Yummy food, pretty flowers & enviornment. I love how you find something positive despite the difficulties, brain fog etc. Hoping your move goes smooth & stress free.
I love your comments, Vickie. Thanks so much! And I’m so glad you enjoyed the vlog. I have now moved! It’s 10 pm and I’m finally finished! I’m sitting on my mom’s couch , in major pain and unable to move 🤣 but soo glad I’m out of that apartment as that apartment was toxic! Hope you’re having a lovely Sunday. 🤗💕💕
@@mkrp4Thank you very much! Just read it. Very interesting indeed. Do you suffer with thyroid issues or Sjögren’s yourself? You do seem well informed on thyroid issues for sure! Thanks again.
@@mysjogrensjourney I was working in ultrasound imaging lab before my present work and wrote a class project on the related topic (thyroid ultrasound imaging) while getting my undergrad degree.
You are such a lovely authentic person. I enjoy your videos, so encouraging. The tree is incredible. It reminds me of the tree roots you & Jeremy talked about in the interview; so many roots feeding the symptoms. Glad to see you. Praying for your housing situation & a new place in time to move that works better for your health. 💜💙🩵🩷
Aww you are soo kind and your comment has made me so happy! I’m so glad you find my videos encouraging. Please let me know if you’d like me to do a video on anything in particular. And yes, you are soo right about the roots!! So many feeding our symptoms! 😔 Really appreciate your words. I hope I find a place soon too! 🙏 Wishing you a lovely evening. 🙏❤️
Oh! I should have said. I'm sorry about that. Thank you for subscribing. I made the second channel for fun & a outlet for crafty stuff. I'm no artist but creating is fun. I'd love to see you creating, taking photos about the city & in your beautiful parks etc. Have you done more galleries?
I think the second channel is a great idea and YOU ARE CREATIVE!! I couldn’t do what you do. I have been doing photo shoots but never thought of videoing them for here which is a shame as there were some blossoms ones. but if you’d like that I’d love to share some photography videos - photo shoots and even park ones like you say here. I’ll make sure I film a video like that soon! ☺️💕
Nice music at the end and beautiful nature scenes! Something to look at: "Research shows that individuals with Sjogren's syndrome have higher levels of TG and TPO antibodies compared to those without Sjogren's syndrome. The presence of thyroid antibodies in those with Sjogren's syndrome is a significant risk factor for developing an AITD".Nov 20, 2023 "Thyroid nodules are extremely common, but even more so in people with Sjögren's. Thyroid nodules are almost always benign, but can be big enough to cause symptoms"
Hey! How are you!? Thanks so much for watching. 🙏🏻 and I’m really glad you liked the music and nature scenes. I always worry if people find those things boring. As to thyroid. Yes I had proper thyroid issues even before being diagnosed with Sjögren’s but apparently I don’t now (but I know I do; they’re not doing the right tests and don’t even get me started! 🤣🤣 I was going to do the more accurate tests with my functional medicine practitioner but we’ve had to pause things for now. But, yes, you are 💯 right!
Antibiotics -> dysbiosis -> leaky gut + loss of good bacteria in our gut that synthesizes vitamins B, K, etc + nutrient malabsorption -> autoimmune disease + chronic fatigue. Never take abx unless it's life or death. Literally. It's also mandatory to remove all gluten, fast carbs and cow's milk/dairy (goat or sheep are OK). Otherwise dysbiosis will be incurable. Also take coconut oil all days.
Hey! Interesting about the losing weight... But I am really sorry that the B1 stopped working for you. Well, since I made that video, I have learnt that it isn't just one thing that can solve our chronic fatigue.. well, it can be but we need to first find out our root causes.. for me personally, I have found that there are a number of things that help me. Do you suffer with chronic fatigue or Sjogren's?
I m 35 year old male with eon nutrition advice i take thiamine hcl 500mg n ttfd 100mg n benfotiamine 300mg with vit b complx magnesium 500mg n vitd3 10000 n ooo wow all my autonomic nervous symptoms n autoimmune sx gone within 3 months
