My experience with autoimmune disease, is that you don't have just to fight the disease, you also have to fight the medical profession. By the time they decide to finally listen, it's far too late, and the damage is done.
I just got diagnosed w lupus and I’m trying to do my research. Thank you for all you do. This is a challenging time for me but I’m glad information such as yours is out there
Great. Hope you always remain well. You may find Dr Brooke Goldner’s videos helpful. I visited Dr Lonnie Herman in South Florida. I feel much much better. Check out his videos on TH-cam too. Best wishes
Dr going on 15 years off all western med's because of a bad treatment that left me with heart lungs liver and kidney involved and now I pray please be kind to yourself and find something to do by yourself as some people don't understand why you can't go be blessed your so strong
Recently diagnosed with SLE and being a doctor it's very difficult to deal with it.. And gonna use my experience to educate others suffering for sure. Under trial N errors now.. Thank U for video..
My mom has lupus. Just shared a vid from 4cyclesoflife. Herbs. I Had her change her diet less sugar and meat and more gr vegs and berries. More water, mineralized with sole'. Adding turmeric. She is doing a Lot better
I watched him and Dr.Sebi for a longtime. I had a autoimmune disease also and I started making fruit and green smoothies and started taking sea moss and Bladderwrack and im 95% healed. Another great thing is Essiac tea. Some swear by Sovereign Silver but Im not sure how natural that is. Cut out meat and soy and white sugar and white flour amd go to Spelt flour/ honey/ agave/ lots of kale and fruits. They don't want to heal us. Its too much money in medicine. They will never tell us its all the poison/ hybrid food we eat.
tawana wilder I seriously doubt it. What doctors know is that diseases like Lupus and psoriasis and Psoriatic arthritis they're autoimmune diseases. 🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄 So it is completely unfair to point the problem at the doctors when the problem clearly is in the immune system. 😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱 I know everyone's immune response is much different. No two people are going to be the same. 😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱 It upsets a lot of different people including me knowing that you believe something like that. 😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱
I was referred to a blood specialist last week for low platelets. I was under the impression that it was because I’d removed my iud 3 months ago & this was the call. Needless to say I walked in there and the “specialist” blankly said it’s “Lupus”. Without her results coming back. She patted me on the back and gave me a look of pity & with that she walked out the room. I have no idea what lupus is or what it entails. I go back today & fully intend to ask questions because honestly i was in shock last time & fighting back tears the whole time.
It takes time to accept the diagnosis. Hang in there. Be kind to yourself. Learn what you can in small gulps. Here is my best tip SPF clothing and hats. You can get them at sporting good stores or online. Also the window shades that stick to the window for your car. 😎💜
Thanks for the info. I'm just starting my Lupus journey at 58 years old. (I'm a guy, too, so I understand that makes me kind of out-of-the norm.) To complicate matters I was diagnosed with CVID six years ago and can't tolerate many immunosuppressives since my primary immune system is already compromised. You are so right about taking responsibility for your own health and educating yourself on your condition(s) and how it is treated. I'm happy with my docs (so far) but I think of them as partners rather than directors. If they stop acting like partners, I'll be looking for another doc.
Wow, this was refreshing! I appreciate your forthright honesty regarding LFA and your doctors, as well as your overall very proactive approach to dealing with lupus. Gut health is indeed so important. I’m thrilled to have found your channel while searching for some kind of genuinely realistic version of yoga for lupus patients. Found it! Yay! :-)
I love that I am able to go to Loma Linda University for my health care. My team of doctors truly care. It is what makes this incredibly difficult disease bearable for me. Thank you for should video. Will check out your blog. 💜
Thank you so much for this video. You rarely see a doctor being this honest about Lupus. I immediately subscribed. I looked forward to seeing more videos from you and I'll definitely be sharing. Thanks again.
Hi Jenn, is it because of the Lupus? I'm asking, because for years I have PA.I can say I'm an expert in that. I'm on a vegan diet for the past 16days. I feel better, will also try to have 1-3 days without any food, because this way the immune system is rebooting. The healthy cells are destroying and "eating" the bad once:) Never did it before, but there's lot of positive feedback about that. I don't believe PA is due only to our psychology and state of mind!! How are you feeling now?
Anxiety: can be from 1. gut microbiome imbalance 2. feelings that need felt and processed 3. brain chemistry issues which are usually related to gut/nutrition issues so back to No. 1; educate about this and a condition called SIBO and SIFO. Next: Anxiety responds well to Emotional Freedom Technique as well, as strange as it is. But you have to want to put in a little effort. Another helpful resource: EMDR. Eye Movement Desensitization is a form of therapy that helps people heal from trauma or other distressing life experiences. It has been extensively researched and proven effective for the treatment of trauma. Being diagnosed with a life altering disease is a TRAUMA. Be good to yourself. I'm sorry you have this burden. Next: consider supporting gut issues with a Elimination Diet. Don't go any less than 30 days. At this point add in ONE food you feel you 'may' be sensitive (gut instinct) and watch for ANY reaction over SEVEN days, not 1, 2, 3 or 4 or 5, but 7. Then add next food. Its tedious apparently, so you may want to go for testing and speed that up. I believe that this is supposed to be a blood test, not a 'skin prick' test. Don't eat foods you are sensitive to. Add them in later once you rebuild gut. Next: learn about fermenting vegetables to rebuild gut...unless you have SIBO then its a whole other story. You might need a functional medicine doctor but you won't be able to ferments without gastrointestinal distress until you have healed. Get help from a functional medicine practitioner or educate. Next: parasite cleanse. See microbeformulas. Don't go small on this. Parasites take over in a weak environment and when people have low stomach acid. Next: Cellular Detox: get at the cells and get toxins out. see Dr. Pompa on the net. Next: revisit the emotional piece from whatever direction you feel you might not have covered. Not much else will budge without this piece. We are physical beings but we are also spiritual, emotional and social and these thing really impact physical well being. Next: get your sleep cycle right. Very important. Don't cheap out on sleep. Next: mild yoga, meditation, and some intense exercise. move your body. Where possible do 15 SECONDS not more, intervals of hard run, kettle bells or the like. Stop at 15 seconds, slow down or stop or rest, and don't exceed 15 minutes total on intervals when you aren't well, which is during flare up or when conditions run you down; in other words everyday, until in remission.Once better all this can move up; the duration and timing of exercise. It actually HURTS your body to over exercise and this is a lower threshold for lupus patients. Never ever ever work against your body. You treat it with respect. Next: Keep a gratitude journal. 2 minutes a day: I am grateful for - the sun that came in my window, the call I got from my son, finding my wallet....do it daily. Don't go on overwhelm with this. Scratch it on a sticky note and put it up here and there for a while. Gratitude will point you in a new direction. There is so much more. It can be too much. Do all these things over t i m e a long time. Oh and if you go keto or paleo or vegan...these are not diets to be done forever. They are for short term therapeutic recovery...unless you have a genetic snip where perhaps vegan is better, but thats not a large portion of the population. You would need to research the better labs for this and consider not giving your genetics to sources that will use it in ways that could damage our freedoms. Back to diet: There are dangers to exclusion diets; it is better to heal the gut and then consume a wide variety of foods for their benefits. However: wheat isn't the same thing it used to be. It is frankinwheat. Some people are so damaged by gluten proteins that even with all they can do will be off of wheat forever. Their leaky gut leads to brain issues and therefore, mental health. And....I mentioned Dr. Pompa with his protocol for Intermittent and 5 day fasts. Yes do that. Start slow. Build up. Good luck. I'm sorry I don't have a personal story to relate to you that might make you feel this is worth trying, when in fact you probably don't have much energy to tackle each day. Yeah, it won't be easy.
I was diagnosed over 20 years ago and it seems to me its environmental. I live in the Philadelphia area and are air quality is shit. I traveled to almost every state at least twice and always felt better in areas with less industry. I felt great when I was in Arizona, no aches or pains or sinus issues. Within 2 days of being home I felt like shit. I also lost my kidneys at age 26.
I'm still not diagnosed after a positive ANA testing(1:320). My symptoms are fatigue, eyebrows hair loss, low blood pressure, I had periods with high BP. Headache and the worst- panic attacks and reeealy scary emotional conditions. Insomnia and more. I can't consume alcohol, because the day after it's hell. Be t I loooove beer:) Want to be diagnosed, no matter if is lupus, because not knowing is not ok. Here in Bulgaria I'm transfered to one doctor to another and no results. Will do testing for Lupus. Thanks for the video, wish you all the best!!
I have SLE and I'm a vegetarian. I haven't touched meat in a decade or more and I feel like crap everyday of my life. I still have very high BP even on meds but I do have kidney disease, lupus nephritis as well. I honestly can't remember the last time I felt healthy, or good.
Hi there Dancing Delilah I trust that this note finds you in good health and spirits. I am responding to your post specifically because you said you have been a Vegetarian for ten years. Coincidentally I was a Vegetarian for 28 years and now have S.L.E. OR LUPUS. Is this linked to it? This has peeked my curiosity because they say it is linked to the gut. Maybe our diets trigger something and that leads to LUPUS? Anyway, it was nice of you to share with us, and I hope you improve considerably in the coming weeks and months. Kind Regards Sukie
Eat high raw. Eating a vegetarian diet is a very good starting point, but please research "digestive leukocytosis". If you are still eating alot of cooked food, this may be the culprit, along with food intolerances (I have many!) Keep a food diary. I have far less flares eating a high raw food diet with my Lupus. I am now transitioning to Raw Foodism for the long term to see if this can help further. Be careful with what you put onto your skin also- your skin is your biggest organ.
Consider a non processed vegan and gluten free diet. If you have a high protein-creatinine ratio, this type of diet will return it within the normal range ASAP.
Thank you Dr Connie for posting this brilliant and truthful video. I was diagnosed August 2016 but was suffering from early 2003, My diagnosis was very delayed and resulted in me having a damaged back and heart problems. If this was flagged earlier maybe I would not be so sick and have suffered so much pain and discomfort, not to mention 13 hospitals stays and counting. Nevertheless, I do believe, diet can help tremendously, with well-being and in some cases even reduce" flare ups". I agree with your statement in the video that the Medical profession does not have all the answers and they, individual doctors, do not know what to expect in the future regarding continuity of health. My thinking is that we as individuals should take as much of the lead with our own health as possible but work in partnership with the Medical profession because we are not medically trained. Wishing you every success in your future endeavours. Kind Regards. Sukie
I was diagnosed with lupus when I was 19 I'm now 34 I haven't taken any meds for almost 8years I mean I still have bad days but not like when I was on the meds. I live in montana & we only have 1 lupus dr here & he won't see me bcuz I won't take the meds 😢.
DeeDee Hernandez nails & all that glitters Wonderful! Every time they try to ween me off of meds, steroids I have a major flare and have to go back on high doses of steroids, chemo all over again. I would love it if I didn't have to take this stuff. I've already had 8 hip and 5 wrist replacements due to side effects of Steroids!!
I took brand name Cellcept and it did wonders for me. I quit all meds for Lupus after five years. I am doing ok, damage done. There are newer meds, but I do not know how effective they are.
I am a sle patient too from 2014 but it suddenly relapsed from 2018 and my doctors don't understand why. Even I had taken cellcept for a year starting from late 2016 but still got relapsed..
This just happened to come up on my TH-cam so I'm 4 years behind. 26 years ago my doctor that I had died he was in a car accident before that he told me I had an autoimmune disease but I had also had polio when I was an infant so I was dealing with a lot of health issues already. The new doctor started running tests and kept telling me he wanted me to take antidepressants. Of course I had the pain my right foot kept dropping I kept dropping things with my right hand I was in a massive flare up kept getting bronchitis kept getting inflammation in my lungs test kept coming back positive for Lupus but he said he didn't believe I had lupus because I was not African-American. I'm Irish. This went on for 2 years and finally I asked him what the antidepressants were supposed to do because I could not take them. Ironically enough they put me in a fog they made me depressed I didn't want to go anywhere or do anything I was okay with all the problems I had before that I'd go out I do things put on my big girl pants and go take on life but this guy kept making me take antidepressants. Finally I said to him these aren't supposed to do anything these are just supposed to shut me up so you don't have to listen to me complain. The doctor shrugged his shoulders and that's when my husband said we're out of here. Too many doctors just are sick of hearing about people with pain from lupus Ms etc so their answer is just drug them so we don't have to listen to it anymore and if they happen to have a moment where they kill themselves it wasn't because they were on an antidepressant that they shouldn't have been taking it's because they had depression. Beware of medications that your doctors are giving you sometimes it's just better to stick with the stuff you know.
I have SLE lupus it's terrible I had an aunt that died of SLE lupus not long ago it attacked her heart and lungs she was on high oxygen that is what it is doing to me
My rheumy of 18 yrs has quit working in the public health system so I have lost 4 doctors this yr because health system has changed in Australia right now I love my rheumy my cardiologist neuro and ophthalmologist I'm going blind I have heart disease hereditary spastic paraplegia anywAy I feel so let down private doctors won't treat me and my local hospital ignores ,y lupus . I'm scared and lost but thank you. My specialist walked out because their superiors would not let them treat me any more because I cost to much . I hate this and I am getting worse but I'm left alone.
Molly Mayor I feel your pain. My Lupus has affected my lungs, I'm on constant oxgen; and it has affected my brain, which has been a result of multiple seizures and 2 TIA's . My symptoms are continuing to get worse, and all of my medications are failing me. The doctor's don't know what to do anymore.
Keshanna Teague I think for we long termers many doctors become to lose hope because when they start treating us they are gunhoe ,they can fix us ... Yrs of chemo ravaged my body I finally told my rheumy he wasn't God and couldn't fix everyone. Lupus is a the devil it's self. You start to recover from one issue and then three pop up. Since I posted this. I've had spinal blocks to help with nerve issues ,what it did was render my right leg useless . Going in your old it's 50/50 well needless to say I'm in my chair and that's where I'll stay. Connie this is a great channel thank you and Keshanna hang in there xoxox
I have a lupus for 10 years. I am a vegetarian for last few years. My major problem is my hair is falling last few years. I always chose herbal remedies if I not getting worse with lupus
I have lupus and I have no help from my doctor or insurance. I'm in pain daily. I almost want to give up. I have nothing but pain to look forward to. I'm just so tired.
Rhonda Cox H.O.P.E Hold On Pain Ends. It's a struggle everyday Rhonda for all of us with Lupus. Don't lose hope & have faith that one day we will find a cure & this pain will no longer be. Blessings to you.
I just find out i have lupus and i really do not understand it cause all my doctors will not help much. I have bad stomach problems does anyway else. My ins sucks so it is so hard to find any one to help.i am begging for help
Lisa Cichocki research shows that most immune diseases such as Lupus us caused by poor gut health You have to change your eating habits and eat healthier foods(ex limit your carb sugar, intake, etc) exercise more, drink more water, get tested for vitamin deficiencies, try doing intermittent fasting because it gives your stomach a break from food and it helps repair your gut
Hello dr what kind of probiotics do you recommend for lupus patients who struggle with anemia low red blood cell count and lupus with stiff and sore muscles in the arms. I have also had one lyphnode removed from the left armpit.
I used to live in the northern suburbs of Georgia. Up 75 North. Wish I was still there so I could meet you. I am coming back in Feb or March. I will see if I can follow you and bring your information to the Midwest. So few Drs around here even know much about Lupus I have learned. Hugs and good videos btw. Thanks.
Hello ma'am .... I am diagnosed with SLE and going under medication. My doctor has recommended me an injection called "Reditux RA" . I wanna know should I go for it..??
How long did it take to get diagnosed? Ive been sick ten years and only diagnosed with fibro but I have symptoms that go beyond fibro. My docters aren't acting much like docters and I'm very very sick. I need help and its extremely important to me to get diagnosed correctly because I want the best non drug healing and help possible. I am not given the time of day. Ive been sick most my life but ten years ago I couldn't keep working and they still haven't approved my disability. Apparently they are waiting till after I lose my home. Sorry if I seem bitter but I am, ive been distreated a lot by docters who still want to claim fibro is a manifest of depression and I was a happy ,working and enjoying life intill ten years ago. For them to tell me depression caused it all is nothing but bull. If anyone reading this can help lead me in the direction of a Docter that will Help with only state pay please let me know. I suffer day in and day out and I just want my life back. Ive got a new grandson and I want to be a grandma, work again go camping again and be who I was before this disease hit me like lighting. Please can anyone help ???????
I have Lupus for 5 years.... I am 19 years old from Bangladesh .... I think my skin is getting worst day by day... doctor prescribed me two Naproxen tablet per day... vitamin D3 tablet daily one piece, folicacid tablet daily one piece and methotrax 10 mg, one piece per week.... I am getting tired of this medication.... :(
Your experience with the Lupus 'establishment' echoes mine with ankylosing spondylitis in New Zealand. Not enough is being done to advance the health of those with autoimmune conditions, specifically with diet. Have you seen the paper relating diversity of leafy greens to the diversity of microbial? It would seem better performing immune systems have more diverse microbial. Relating that to the work of Prof Ebringer et al regarding the role of the klebsiella bacteria in ankylosing spondylitis makes a lot of sense to me. Wondering if it is similar to Lupus. Your conclusions seem to be very similar to mine, I would presume that you have read similar research to me. By the way, the only health providers who I consider to be fully on board with my recovery is my physiotherapist.
This is a very good video I have been diagnosed two months ago with boarder line Lupus and waiting to see my doctor and of course I'm very concerned and worried
I wish you were able to talk to my girlfriend. She is an amazingly stubborn woman and refuses to read anything about Lupus. She doesn’t want to know. I truly wish there was a way for you to call and talk to her about it and explain to her how to go about managing living with her Lupus. 😭😭😭😭😭😭😭
El Matt That is not true. People can develop an allergy to food at any time. There is so much that you don't know about autoimmune diseases. 😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱 Autoimmune diseases like Scleroderma and Multiple Sclerosis and even Rheumatoid Arthritis are genetic meaning someone from your current families generation could have had the childhood form or maybe the adult form. 😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱 So many of you guys think oh I can just cut out gluten or dairy or animal products, but what you are doing is hurting your health. There are doctors that can't be trusted and they're full of shit and you are saying I'll believe everything that comes out of doctor Clint Patterson's mouth.
Yeah I stopped putting my confidence in doctors I started getting educated about all my meds.I always ask why I'm curious why this why that I actually just got off prednisone now the conversation between my rheumy and I is a healthy convo because she knows she can't just randomly shove toxic meds at me.
Have you tried CBD. I also stopped trusting doctor after being given Cytoxan which one of the side effects happens to be infertility. I gave them my body to do as they pleased because they assured me they’d get it under control but in the last 6 years since I’ve been diagnosed I’ve had 3 flares. After I recovered from the last flare in December of 2017 I did a lot of research. Vegan diet, Alkaline vegan diet, juicing, pretty much anything that sounded like it made sense. Then I read about how THC and CBD help tremendously with lupus and how they replace the standard meds. You have to see this with an open mind. I was totally against cannabis but only lupus patients know how terrible it is to go through flares. I’ve been off my meds since the beginning of 2018. I’ve been using CBD daily and maintaining a vegan diet. I’ve also been drinking alkaline water with a ph level of 9 or higher. I don’t know if it really works but I haven’t had a flare or symptoms of lupus since I started. I hope this helps anyone who wants to look for an alternative
I have lupus and I just started my first treatment with beniysta do you think that this is a good treatment for lupus patients I am so tired of being on the steroids it's the best and worst medication Love to hear your feedback 💜
It's a good treatment if it works for you, but like anything else, it may have unintended consequences. Keep Lupus under control with benlysta and work on your health by eating a clean and anti-inflammatory diet and eventually when all is stable talk with your doctor about tapering off. No long term research on Benlysta, its still in clinical trials and limited data. I can tell you I've done it for over 15 months and am tapering now and working with my amazing Rheumatologist to do so. I am vigilant about my diet, exercise, and stress load.
i have joint pains,my esr & ana are high.my wbc, rbc & platelet are low.i have done rheumatoid panel,anti dsna and anti sm all are negative. my doctor prescribed me folic acid onlyIs this lupus? everytime i shower i loose around 20-25 strands of hair.im active during the day and feel tired in the afternoon. i have rashes in my arms.but not in my face.my doctor suspects its itp and just give me folic acid to boost my platelet.and she cannot roll out lupus because my lupus test are negative. what do you think is this a mild lupus?
I have Lupus and benlysta was bad for me. I have been having Lupus since I was 15 and now I’m 40. I had many hip surgeries that required replacement 7 times. Partial shoulder replacements (both). Benlysta caused me to have more infections than usual, stayed hospitalized in ICU. I had a breathing tube down my throat. It was horrific.
How do you get "Leaky Gut" by eating high fructose corn syrup/ corn syrup in food, causes pin holes in your intestines, and starts LEAKYING in your body = Lupus.
*says a very long sarcastic* Yeeeeeeeeeeeeeeeeeeeeeeah.... regarding the Lupus 'support' forums for UK too. I've had Discoid Lupus for 14 years, it's destroying my face, scalp and ears. I found several sources on foods that should be avoided and ones to eat more of. I excitedly shared the clinical website (not teen year old blogs) on the forum to have it removed and a private message sent from admin that I cannot give medical advice as I was not a dietary clinician (they didn't even inquire about any qualifications I might have) so I could not give out advice on their forum. A couple of months later I put on the forum that I have found a bees wax skin cream that did wonders for my extremely sore, itchy, and painful skin... but again they removed my post and gave me a warning that if I did it again I would be banned from the forum. I left.
Yeah I don't bother with those message boards anymore. I think big pharma has their hands on those boards. It's now full of people whining and telling each other to take their meds. Most of them are hopeless, sadly. If you post alternative solutions you get your message erased by admin, like you have, or bashed by other members.
@jessica powers Thanks I do not have the SLE type of Lupus though. There is more than one variety. Mine is the skin lesion variety. I'll email you anyway as nothing has worked for me so far.. Not even to calm it down or keep it under control. I am in grave danger of losing my nose and ears now. I'm not sure if I got the lucky type as I will only be losing my looks and not my life. SLE can be fatal.
There's no one solution for everyone and all diseases start in the gut. Just notice that Western medicine doesn't place emphasis on gut health and education. As long as people can stay sick, the medical professionals can prescribe a bunch of pills for us to take, thus making money. Do everything you can to educate yourself about the gut and look to eastern medicine for that.
I was diagnosed with lupus after many years of suffering. Now I am totally alone; I stay with my son and Wife and 3 of the most beautiful grandsons you ever want to see. There is a big problem, They hate me; my Son and Daughter-in-law, I feel it is killing me and I do not know what to do; my life is a constant day dream of killing myself. I am told several times a day that they hate me, they won't talk to me; but worst of all I have no place to go. what would you do?
Michael Bianca Bouvier there’s several support groups of lupus patients that can help you see that u have support, a family- search on Facebook- lupus loud lupus 365 and lupus princess warrior. I pray that you find peace and a better situation.
Michael Bianca Bouvier they are fools why would they hate when you have an illness ? life can turn back on them and they could end up with a severe illness, how would they feel if they were hated for having an illness? they are ridiculous. I am so sorry you're going through this I am also suffering from lupus I've been having this illness for 18 years already it's a terrible illness and I just wished that more people would understand it and instead of judging us they would give us a hand for crying out loud.
Dearest Micheal. My heart breaks for you and many prayers to you. This disease takes everything. And yes many many people in out lives do not understand what we are going through. I absolutely hate it when someone tells me I look good when every single joint, none in my body are screaming in pain. Even the Drs. do this to me. I'm extremely angry and frustrated myself. I was diagnosed only 4 years ago. Symptoms started at 26. Seen the 5 Rheumatologist in my area and none picked it up. Even with positive ANA tests. The damage has been done to every organ in my body. It was detected during a gastrointestinal surgery. Then 3 months into it I got a severe rash of redness, swelling skin like leather on my hands, chest, some in my face. Doctors said raynauds syndrome. Usually one gets a secondary illness to lupus I was told. I want to scream at every one of my 7 specialists and friends. Friends that I have left. Can't you see what is happening to me!!! I can't make stairs, days no weeks I have to stay in bed and at home due to being sick and in unimaginable pain that uf they felt it for a day they would be running for the bridge. I miss appointments due to being so sick I can't get there. It's difficult to get out of the bed to go to the bathroom. I'm looking the ability to take care of myself!!! Please help me. And yes on one cares at all. I'm terrified of what is going to happen to me. I have no family and there as no support groups for lupus in my area. I've tried all the treatments. Forget it I'm not going there. If I had 20,000 I would go to Mexico for the stem cell transplant. Which Form the research
All diseases start in the gut and unfortunately Western Medical doctors don't know a whole lot about it. If you genuinely want to learn about gut health, start researching Ayurveda and work with a practitioner who has a proven track record.
Gut microbiome...you have 3 brains...one in the head, one in the heart, one in the gut. Fact: gut produces many times more serotonin in the brain. Its but one layer of cells thick. It can be damaged by emotional trauma, heavy metal toxic burdens, diet and particularly gluten molecules....wheat isn't what it used to be. Gut healthy is ESSENTIAL to well being everywhere else in the body. When you take one round of antibiotics it wipes out whole populations of naturally occurring beneficial bacteria in your gut which job is to break down the nutrients from your food: poor gut health equals malabsorption. It can mean emotional issues. It certainly can create depression and anxiety. It is can be so out of balance you can develop SIBO. You can see that information on line. Every person with autoimmune issues has a gut issue. All issues begin in the gut because the gut is where we absorb our nutrients but it is also another important and key place where we make the hormones for our happiness. It is also an emotional processing centre. Also when the gut is inflammed from toxic burden (do you use shampoo that is 100% clean?) this leads to systemic inflammation....lupus is one aspect of inflammation. Now as far as natural products: ignore all labels that say "natural" which is but one of many dozens of chemicals used to lace our food. Glyphosate (Round Up) is in every baby born with autism. That smacks doesn't it? Glyphosate ruins the microbiome of the soil and it ruins the gut microbiome of a human. And who is not banning this neurotoxin? the government....they don't ban something with high revenue. Anyway, as for your gut, wheat contains sick amounts of this poison. Why eat it? Its in everything. Going clean is hard work. God Bless
Sometimes people say the most absurd and stupid things I have ever heard.......... I mean we are all humans and a gluten free diet only works if you have Celiac Disease. 😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱 😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱 Someone needs to tell that moron to stop giving people the wrong information. It truly is insulting because those people have no absolutely no education. You read the stuff online and you know what those things are sometimes true and sometimes not. Almost everything is plagarized.
Helping me get rid of my Lupus infection is what I will never forget in my whole life #drogoh. You're welcome to my family, thanks for saving my life .💛💛 .
Thank you. This how I feel. I'm 66 years old and was diagnosed with Lupus 4years ago. I take Plaquenil and see no visible relief for my ills. Drs. give me the impression that there is no cure and no relief in my future.
If you don't see relief, there's no reason to stick with it. I want to empower you to take control over your health! Talk to doctors about potentially trying another treatment method. Additionally, build your health with things you can control, such as diet, exercise, and stress management.
i'm 54 years old was told in mid to late 70's i had lupus,and yes i'm male,was told wouldn't live to see 18 or even 21 with out treatments,so took everything and anything they gave me made it worst,figure i wasn't going to live long so right after high school and instead of going to penn sate on full ride,i joined the army and ask which one had the highest death count,easy combat engineers,between to fighting army's try to make a way for your side to reach them,so they are trying to kill you,and then your men are behind you fighting them and yes a lot of us where and still getting killed by friendly fire ,now a days it's clearing bombs,mine's,i.e.d's that kill most of them,baby brother join my unit and got back a few years a go and as issues with what he as seen and being the only one of his unit still a live after his Humvee blow up,and was in any thing that was very good chance of me dieing,but never did,doctor stop all the meds but for pain,anxiety when on base,and for skin rash's and mouth sore's,now since my lupus is getting so bad i can barely walk,i was re-tire from Federal government in 2011,wish i would have die while on a mission or case,wife and son would have been set for life with a very great health ins. i got through the army before they knew i had it for sure,no only 53 feel like 100 every broke bone,stab,shot,wound hurts on top of the nerve damage from either fighting or the lupus doesn't matter one make the other worst,but before i was released the doctors for the unit i worked for,granted my wish,just make me comfortable with pain meds,and Xanax, all so gave me bi-polar and phyco meds so no one would bat a eye when i turn done trying drugs or drink,kept my own bottle water in a locked cooler in my armed van,with my 4 baby's in side no one wanted near it or more like them,yes i have o.c.d. and paranoid about ever thing
Hi there TheWollff I trust that you are still with us. Your account was compelling reading. There are so many things you wrote about which echo my feelings exactly and I believe when you penned that response to the video on Lupus it came from a deep place, Struggles and daily battles seem to be the norm as a lupus patient. I use the word patient deliberately, because, once you are diagnosed, it is endless hospital admissions, pills, pain, etc. To-date I have been admitted overnight, shortes stay 5 nights, longest 23 days, 22 nights in hospital with a Lupus flare-up. As the good doctor says in the video, the Medical profession are guessing most of the time. It is a Mysterious illness. No known cure. Therefore it has to be managed. This is where Net-working comes in. If your Mobility has been affected like mine, you may be limited to home. Or if you do venture outside, may have what I call Payback Days, when you are assaulted from head to toe with pain because you exerted yourself the day before. It can be helpful to talk about your condition and not bottle things up because LUPUS not only affects your physical body but also your Mind. I am believing things have improved for you since your post 7 months ago, and you are getting all the support you need. Take care, from a fellow Lupus Experiencer.
Sukie O Clarke: Those “payback days” are the only thing that stops me from fully enjoying a day that I otherwise feel somewhat good on. They are hell and misery combined and one happy day out ALWAYS results in a minimum of three days in bed. I almost feel like I’m being punished for doing something remotely “fun/happy” for an afternoon on a day in which my pain is tolerable with break-through meds and my brain fog and mental state are both as clear as they can be, within reason. Ten years later and my “payback days” are just as bad now as when they first began in 2008. It’s extremely frustrating.
Lupus could be cured. Sad part is it seems more money in making us take pills daily. So sad. I got covid and right after that had the EBV virus and after that Lupus. I've decided not to take meds and will go when it's my time. Best wishes!
Hi, I love watching your videos. I have not been diagnosed with Lupus, but I have all symptoms. I itch all day long but no rash.. I get butterfly rash on my face and just recently my hair has thinned out. Had blood work done ,positive ANA .. My iron is good negative for SLE. So I just recently ordered supplements. CoQ10,probiotic and prebiotic tab . Turmeric, folic acid and vitamin c supplements. Changed my diet. I can’t seem to get enough salads. I love them and I have always worked out 3 times a week. But lately all I want to do is rest .. and on top of this I tested positive for HPV**** so I’m open for suggestions 🙏🏽
Hi Keion, those are good changes that you're making but Lupus diagnosis takes up to 5 years. From what you've shared, your immune system may be triggered but not enough to show up on the typical Lupus serology. I would find a doctor that does AVISE testing to take a deeper look. If you have insurance at most you'd pay out of pocket is $45 and it's the most accurate test for Lupus which would also show other markers to rule out other autoimmune conditions. If you cannot locate a doctor near by, I am able to send you the lab kit myself but it would be $145 (it's at cost I don't profit from it). As for the supplements, make sure that you're getting the good quality highest grade supplements as not all supplements are created equally. CoQ10 is good, a good quality multi strain probiotics are best for those with autoimmune symptoms (lactobacillis, Sacromyeces, and Bifidobacterium strains are best). As for the turmeric, I recommend a good quality curcumin and would add a good quality fish oil. (If your're interested in what I would specifically recommend, email me at info@alkalinewellness.com). Prebiotics are good but with you eating salad, that should be good so as long as you add more colors to your vegetables, I believe unless you're not able to consume the vegetables and select fruits, it's best to get it in foods. Thanks for the feedback!
Dr. Connie Jeon Awesome! Thanks for your quick reply, I didn’t realize I was signed into my son’s TH-cam account. My name is Chereese and I have signed up for your news letter. I do have insurance and already have an appointment on the 10th to do a full lupus workup” is what the doctor called it. Also my recent lab work reveled my platelet count is high.. my vitamins are normal purchased from Swanson.. my probiotic contains bifidobacterium and nutraFlora. But I will take a look at the supplements you are suggesting. Thanks again. I will also email you too
Thanks! I need to look into Dr. Seibi b/c my doctors are getting paid whether they can help me or not.smh! Taking all these toxins/poisons and for what? My cousin and aunt both died this year from complications due to this d*** disease. #Frustrated777
Umhra, I did lose my hair and had a very bad rash. At the onset, I had severe hair loss in patches creating baldness on my head. It was awful. Key is to heal your gut, improve your nutrient absorption, and decrease inflammation. Easier said than done and it's always a work in progress.
It doesn't effect everyone the same. Some people might experience joint pain and others might have kidney issues. Its a systemic disease so it can surface anywhere almost. Its different for everyone.
I loose my hair more when I am not on top of my nutrition. Ironically my rash comes and goes. By the grace of God I will say my rash is luckily (for lack of better words) not too noticeable. 'Knock on wood'. I feel for those who have that distinct butterfly rash. I have many people I met over the years with the butterfly rash that is very obvious. But on the other hand these same people don't all have the systemic issues I have. I have learned over 10 years every Lupus patient is very different. That's another reason why it's so hard to diagnose I bet?
JK H same here. I don’t have the “butterfly rash.” I actually have the “backhand rash(only one side of my cheek! Lol & it looks like I got backhanded. So, that’s what I call my own rash! 😜🤪☺️)I have “thinning of hair.” But not any “patches” of hair lose. & for me. I’ve come to terms that if I ever lose al my hair. I’ll just buy me a pretty wig. ☺️😁
haighyvshaighy Exactly what works for you may not work for everyone else. I have lupus as well I have joint pain, kidney damage, brain fog, seizures, hair loss, discoid lupus, etc. I take numerous meds for almost 3 years I am sicker than I was before I started getting treatment.
My experience with autoimmune disease, is that you don't have just to fight the disease, you also have to fight the medical profession. By the time they decide to finally listen, it's far too late, and the damage is done.
My experience is the same.
This!!! Good doctors are rare to find nowadays
Amen!!!!!!! I am working so hard to be drug free & I feel very alone in my journey. I am focused & hopeful.
I just got diagnosed w lupus and I’m trying to do my research. Thank you for all you do. This is a challenging time for me but I’m glad information such as yours is out there
You are not alone.
I was diagnosed on 2017 and that exactly how I felt in my doctors . I’m excited that I found this Doctor 😊
I was diagnosed in 2011. I got off the toxic meds in 2013. I use relaxation, rest and water to keep the symptoms at bay.
You should consider a non processed vegan and gluten free diet.... especially if you have kidney issues.
@jessica powers hi what is your diet with sle
THANKNYOU I found out 2016. I'm 58
@jessica powers please help me my legs and ankle so Tight hurt
Great. Hope you always remain well. You may find Dr Brooke Goldner’s videos helpful. I visited Dr Lonnie Herman in South Florida. I feel much much better. Check out his videos on TH-cam too. Best wishes
Dr going on 15 years off all western med's because of a bad treatment that left me with heart lungs liver and kidney involved and now I pray please be kind to yourself and find something to do by yourself as some people don't understand why you can't go be blessed your so strong
Recently diagnosed with SLE and being a doctor it's very difficult to deal with it.. And gonna use my experience to educate others suffering for sure. Under trial N errors now.. Thank U for video..
I have herbal medicine that will help you get rid of Lupus naturally, check my video for my information
My mom has lupus. Just shared a vid from 4cyclesoflife. Herbs. I Had her change her diet less sugar and meat and more gr vegs and berries. More water, mineralized with sole'. Adding turmeric. She is doing a Lot better
That's awesome!
I watched him and Dr.Sebi for a longtime. I had a autoimmune disease also and I started making fruit and green smoothies and started taking sea moss and Bladderwrack and im 95% healed. Another great thing is Essiac tea. Some swear by Sovereign Silver but Im not sure how natural that is. Cut out meat and soy and white sugar and white flour amd go to Spelt flour/ honey/ agave/ lots of kale and fruits. They don't want to heal us. Its too much money in medicine. They will never tell us its all the poison/ hybrid food we eat.
Sole?
tawana wilder e
tawana wilder
I seriously doubt it. What doctors know is that diseases like Lupus and psoriasis and Psoriatic arthritis they're autoimmune diseases.
🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄
So it is completely unfair to point the problem at the doctors when the problem clearly is in the immune system.
😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱
I know everyone's immune response is much different. No two people are going to be the same.
😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱
It upsets a lot of different people including me knowing that you believe something like that.
😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱
I was referred to a blood specialist last week for low platelets. I was under the impression that it was because I’d removed my iud 3 months ago & this was the call. Needless to say I walked in there and the “specialist” blankly said it’s “Lupus”. Without her results coming back. She patted me on the back and gave me a look of pity & with that she walked out the room. I have no idea what lupus is or what it entails. I go back today & fully intend to ask questions because honestly i was in shock last time & fighting back tears the whole time.
It takes time to accept the diagnosis. Hang in there. Be kind to yourself. Learn what you can in small gulps. Here is my best tip SPF clothing and hats. You can get them at sporting good stores or online. Also the window shades that stick to the window for your car. 😎💜
So True! There are more fundraising and awareness about Lupus out there than actual help and treatment information! It’s so frustrating for us…
Thanks for the info. I'm just starting my Lupus journey at 58 years old. (I'm a guy, too, so I understand that makes me kind of out-of-the norm.) To complicate matters I was diagnosed with CVID six years ago and can't tolerate many immunosuppressives since my primary immune system is already compromised.
You are so right about taking responsibility for your own health and educating yourself on your condition(s) and how it is treated. I'm happy with my docs (so far) but I think of them as partners rather than directors. If they stop acting like partners, I'll be looking for another doc.
Wow, this was refreshing! I appreciate your forthright honesty regarding LFA and your doctors, as well as your overall very proactive approach to dealing with lupus. Gut health is indeed so important. I’m thrilled to have found your channel while searching for some kind of genuinely realistic version of yoga for lupus patients. Found it! Yay! :-)
I am so happy you find these videos helpful!
I love that I am able to go to Loma Linda University for my health care. My team of doctors truly care. It is what makes this incredibly difficult disease bearable for me. Thank you for should video. Will check out your blog. 💜
Thank you so much for this video. You rarely see a doctor being this honest about Lupus. I immediately subscribed. I looked forward to seeing more videos from you and I'll definitely be sharing. Thanks again.
Lupus has put me through so many down days until now i'm dealing with anxiety.
Hi Jenn, is it because of the Lupus? I'm asking, because for years I have PA.I can say I'm an expert in that. I'm on a vegan diet for the past 16days. I feel better, will also try to have 1-3 days without any food, because this way the immune system is rebooting. The healthy cells are destroying and "eating" the bad once:) Never did it before, but there's lot of positive feedback about that. I don't believe PA is due only to our psychology and state of mind!! How are you feeling now?
Jennifer Jones look up Dr Sebi. He healed it . Jesus does too
Anxiety: can be from 1. gut microbiome imbalance 2. feelings that need felt and processed 3. brain chemistry issues which are usually related to gut/nutrition issues so back to No. 1; educate about this and a condition called SIBO and SIFO. Next: Anxiety responds well to Emotional Freedom Technique as well, as strange as it is. But you have to want to put in a little effort. Another helpful resource: EMDR. Eye Movement Desensitization is a form of therapy that helps people heal from trauma or other distressing life experiences. It has been extensively researched and proven effective for the treatment of trauma. Being diagnosed with a life altering disease is a TRAUMA. Be good to yourself. I'm sorry you have this burden.
Next: consider supporting gut issues with a Elimination Diet. Don't go any less than 30 days. At this point add in ONE food you feel you 'may' be sensitive (gut instinct) and watch for ANY reaction over SEVEN days, not 1, 2, 3 or 4 or 5, but 7. Then add next food. Its tedious apparently, so you may want to go for testing and speed that up. I believe that this is supposed to be a blood test, not a 'skin prick' test. Don't eat foods you are sensitive to. Add them in later once you rebuild gut. Next: learn about fermenting vegetables to rebuild gut...unless you have SIBO then its a whole other story. You might need a functional medicine doctor but you won't be able to ferments without gastrointestinal distress until you have healed. Get help from a functional medicine practitioner or educate. Next: parasite cleanse. See microbeformulas. Don't go small on this. Parasites take over in a weak environment and when people have low stomach acid. Next: Cellular Detox: get at the cells and get toxins out. see Dr. Pompa on the net. Next: revisit the emotional piece from whatever direction you feel you might not have covered. Not much else will budge without this piece. We are physical beings but we are also spiritual, emotional and social and these thing really impact physical well being. Next: get your sleep cycle right. Very important. Don't cheap out on sleep. Next: mild yoga, meditation, and some intense exercise. move your body. Where possible do 15 SECONDS not more, intervals of hard run, kettle bells or the like. Stop at 15 seconds, slow down or stop or rest, and don't exceed 15 minutes total on intervals when you aren't well, which is during flare up or when conditions run you down; in other words everyday, until in remission.Once better all this can move up; the duration and timing of exercise. It actually HURTS your body to over exercise and this is a lower threshold for lupus patients. Never ever ever work against your body. You treat it with respect. Next: Keep a gratitude journal. 2 minutes a day: I am grateful for - the sun that came in my window, the call I got from my son, finding my wallet....do it daily. Don't go on overwhelm with this. Scratch it on a sticky note and put it up here and there for a while. Gratitude will point you in a new direction.
There is so much more. It can be too much. Do all these things over t i m e a long time.
Oh and if you go keto or paleo or vegan...these are not diets to be done forever. They are for short term therapeutic recovery...unless you have a genetic snip where perhaps vegan is better, but thats not a large portion of the population. You would need to research the better labs for this and consider not giving your genetics to sources that will use it in ways that could damage our freedoms. Back to diet: There are dangers to exclusion diets; it is better to heal the gut and then consume a wide variety of foods for their benefits. However: wheat isn't the same thing it used to be. It is frankinwheat. Some people are so damaged by gluten proteins that even with all they can do will be off of wheat forever. Their leaky gut leads to brain issues and therefore, mental health. And....I mentioned Dr. Pompa with his protocol for Intermittent and 5 day fasts. Yes do that. Start slow. Build up. Good luck. I'm sorry I don't have a personal story to relate to you that might make you feel this is worth trying, when in fact you probably don't have much energy to tackle each day. Yeah, it won't be easy.
I was diagnosed over 20 years ago and it seems to me its environmental. I live in the Philadelphia area and are air quality is shit. I traveled to almost every state at least twice and always felt better in areas with less industry. I felt great when I was in Arizona, no aches or pains or sinus issues. Within 2 days of being home I felt like shit. I also lost my kidneys at age 26.
You should consider a non processed vegan and gluten free diet especially if you have kidney issues.
I was diagnose with lupus in 2008 went 2 years didn’t know what was wrong until I went to Temple Texas Baylor Scott white hospital
Thank Yu for the information I was diagnosed in 2017 with Decoid Lupus.
I have herbal medicine that will help you get rid of Lupus naturally, check my video for my information
I have discoid lupus as well
I don't have good visits with rheumatoid doctors
Someone told me it was "Leaky Gut" problem.
I'm still not diagnosed after a positive ANA testing(1:320). My symptoms are fatigue, eyebrows hair loss, low blood pressure, I had periods with high BP. Headache and the worst- panic attacks and reeealy scary emotional conditions. Insomnia and more. I can't consume alcohol, because the day after it's hell. Be t I loooove beer:) Want to be diagnosed, no matter if is lupus, because not knowing is not ok. Here in Bulgaria I'm transfered to one doctor to another and no results. Will do testing for Lupus. Thanks for the video, wish you all the best!!
Awww all the best
I just got tested for Lupus and I have the symptoms that you are talking about and it's called sojgren's syndrome
Look at antiphospholipid antibody syndrome
Avise test
I have SLE and I'm a vegetarian. I haven't touched meat in a decade or more and I feel like crap everyday of my life. I still have very high BP even on meds but I do have kidney disease, lupus nephritis as well. I honestly can't remember the last time I felt healthy, or good.
Hi there Dancing Delilah
I trust that this note finds you in good health and spirits. I am responding to your post specifically because you said you have been a Vegetarian for ten years. Coincidentally I was a Vegetarian for 28 years and now have S.L.E. OR LUPUS. Is this linked to it? This has peeked my curiosity because they say it is linked to the gut. Maybe our diets trigger something and that leads to LUPUS? Anyway, it was nice of you to share with us, and I hope you improve considerably in the coming weeks and months. Kind Regards Sukie
Eat high raw. Eating a vegetarian diet is a very good starting point, but please research "digestive leukocytosis". If you are still eating alot of cooked food, this may be the culprit, along with food intolerances (I have many!) Keep a food diary. I have far less flares eating a high raw food diet with my Lupus. I am now transitioning to Raw Foodism for the long term to see if this can help further. Be careful with what you put onto your skin also- your skin is your biggest organ.
Consider a non processed vegan and gluten free diet. If you have a high protein-creatinine ratio, this type of diet will return it within the normal range ASAP.
Thank you Dr Connie for posting this brilliant and truthful video. I was diagnosed August 2016 but was suffering from early 2003, My diagnosis was very delayed and resulted in me having a damaged back and heart problems. If this was flagged earlier maybe I would not be so sick and have suffered so much pain and discomfort, not to mention 13 hospitals stays and counting. Nevertheless, I do believe, diet can help tremendously, with well-being and in some cases even reduce" flare ups". I agree with your statement in the video that the Medical profession does not have all the answers and they, individual doctors, do not know what to expect in the future regarding continuity of health. My thinking is that we as individuals should take as much of the lead with our own health as possible but work in partnership with the Medical profession because we are not medically trained. Wishing you every success in your future endeavours. Kind Regards. Sukie
I was diagnosed with lupus when I was 19 I'm now 34 I haven't taken any meds for almost 8years I mean I still have bad days but not like when I was on the meds. I live in montana & we only have 1 lupus dr here & he won't see me bcuz I won't take the meds 😢.
DeeDee Hernandez nails & all that glitters Wonderful! Every time they try to ween me off of meds, steroids I have a major flare and have to go back on high doses of steroids, chemo all over again. I would love it if I didn't have to take this stuff. I've already had 8 hip and 5 wrist replacements due to side effects of Steroids!!
@@dancingdelilah8742 Consider a non processed vegan and gluten free diet.
The last 30 seconds of this video is the only informative part.
I took brand name Cellcept and it did wonders for me. I quit all meds for Lupus after five years. I am doing ok, damage done. There are newer meds, but I do not know how effective they are.
So are you cured now?
I am a sle patient too from 2014 but it suddenly relapsed from 2018 and my doctors don't understand why. Even I had taken cellcept for a year starting from late 2016 but still got relapsed..
@@zwizabrahma6159 I hope that you go back into remission.
@@zwizabrahma6159 You should consider a non processed vegan and gluten free diet.
Am on cellcept too, seen the lupus also affects my kidneys. My rheumatologist advice against getting off my meds.
I totally agree. Sle 23 years surviving
Hello @
Dr. Connie Jeon, My ANA is positive but anti ds dna < 0.5 and lupus was ruled out .. should I be worried ? what testing would you suggest ?
This just happened to come up on my TH-cam so I'm 4 years behind. 26 years ago my doctor that I had died he was in a car accident before that he told me I had an autoimmune disease but I had also had polio when I was an infant so I was dealing with a lot of health issues already. The new doctor started running tests and kept telling me he wanted me to take antidepressants. Of course I had the pain my right foot kept dropping I kept dropping things with my right hand I was in a massive flare up kept getting bronchitis kept getting inflammation in my lungs test kept coming back positive for Lupus but he said he didn't believe I had lupus because I was not African-American. I'm Irish. This went on for 2 years and finally I asked him what the antidepressants were supposed to do because I could not take them. Ironically enough they put me in a fog they made me depressed I didn't want to go anywhere or do anything I was okay with all the problems I had before that I'd go out I do things put on my big girl pants and go take on life but this guy kept making me take antidepressants. Finally I said to him these aren't supposed to do anything these are just supposed to shut me up so you don't have to listen to me complain. The doctor shrugged his shoulders and that's when my husband said we're out of here. Too many doctors just are sick of hearing about people with pain from lupus Ms etc so their answer is just drug them so we don't have to listen to it anymore and if they happen to have a moment where they kill themselves it wasn't because they were on an antidepressant that they shouldn't have been taking it's because they had depression. Beware of medications that your doctors are giving you sometimes it's just better to stick with the stuff you know.
I have SLE lupus it's terrible I had an aunt that died of SLE lupus not long ago it attacked her heart and lungs she was on high oxygen that is what it is doing to me
My rheumy of 18 yrs has quit working in the public health system so I have lost 4 doctors this yr because health system has changed in Australia right now I love my rheumy my cardiologist neuro and ophthalmologist I'm going blind I have heart disease hereditary spastic paraplegia anywAy I feel so let down private doctors won't treat me and my local hospital ignores ,y lupus . I'm scared and lost but thank you. My specialist walked out because their superiors would not let them treat me any more because I cost to much . I hate this and I am getting worse but I'm left alone.
Molly Mayor I feel your pain. My Lupus has affected my lungs, I'm on constant oxgen; and it has affected my brain, which has been a result of multiple seizures and 2 TIA's . My symptoms are continuing to get worse, and all of my medications are failing me. The doctor's don't know what to do anymore.
Keshanna Teague I think for we long termers many doctors become to lose hope because when they start treating us they are gunhoe ,they can fix us ... Yrs of chemo ravaged my body I finally told my rheumy he wasn't God and couldn't fix everyone. Lupus is a the devil it's self. You start to recover from one issue and then three pop up. Since I posted this. I've had spinal blocks to help with nerve issues ,what it did was render my right leg useless . Going in your old it's 50/50 well needless to say I'm in my chair and that's where I'll stay. Connie this is a great channel thank you and Keshanna hang in there xoxox
I have a lupus for 10 years. I am a vegetarian for last few years. My major problem is my hair is falling last few years. I always chose herbal remedies if I not getting worse with lupus
Consider a non processed vegan and gluten free diet.
Thanks so much. Your message is helpful about SLE.
I have lupus and I have no help from my doctor or insurance. I'm in pain daily. I almost want to give up. I have nothing but pain to look forward to. I'm just so tired.
Rhonda Cox
H.O.P.E Hold On Pain Ends.
It's a struggle everyday Rhonda for all of us with Lupus. Don't lose hope & have faith that one day we will find a cure & this pain will no longer be. Blessings to you.
Rhonda Cox don't give up love change ur diet Eat clean it works so much better than medicine I did this
May I ask where your pain is?? as I ache all over daily .
Free health care in Canada
@@chrisnu6078 Food is your medince and minerals....like magnesium.
I just find out i have lupus and i really do not understand it cause all my doctors will not help much. I have bad stomach problems does anyway else. My ins sucks so it is so hard to find any one to help.i am begging for help
Lisa Cichocki research shows that most immune diseases such as Lupus us caused by poor gut health You have to change your eating habits and eat healthier foods(ex limit your carb sugar, intake, etc) exercise more, drink more water, get tested for vitamin deficiencies, try doing intermittent fasting because it gives your stomach a break from food and it helps repair your gut
Lisa, gut permeability is a huge issue, here's another blog you can read about lupusrebel.com/leaky-gut/
Tas J no vegan is bad for you.
You have to go High raw. Eat high raw food. Raw foodism is the way forward. Please research Doctor Gerson on TH-cam.
Hello dr what kind of probiotics do you recommend for lupus patients who struggle with anemia low red blood cell count and lupus with stiff and sore muscles in the arms. I have also had one lyphnode removed from the left armpit.
The best probiotics are found in raw saurkrauts!
I used to live in the northern suburbs of Georgia. Up 75 North. Wish I was still there so I could meet you. I am coming back in Feb or March. I will see if I can follow you and bring your information to the Midwest. So few Drs around here even know much about Lupus I have learned. Hugs and good videos btw. Thanks.
Dr.Connie thank Yu so much on Lupus.🤗❣️❣️
You are so welcome
can lupus pation is take antibiotic or no?
Hello ma'am .... I am diagnosed with SLE and going under medication. My doctor has recommended me an injection called "Reditux RA" . I wanna know should I go for it..??
did you ever do it?
How long did it take to get diagnosed? Ive been sick ten years and only diagnosed with fibro but I have symptoms that go beyond fibro. My docters aren't acting much like docters and I'm very very sick. I need help and its extremely important to me to get diagnosed correctly because I want the best non drug healing and help possible. I am not given the time of day. Ive been sick most my life but ten years ago I couldn't keep working and they still haven't approved my disability. Apparently they are waiting till after I lose my home. Sorry if I seem bitter but I am, ive been distreated a lot by docters who still want to claim fibro is a manifest of depression and I was a happy ,working and enjoying life intill ten years ago. For them to tell me depression caused it all is nothing but bull. If anyone reading this can help lead me in the direction of a Docter that will Help with only state pay please let me know. I suffer day in and day out and I just want my life back. Ive got a new grandson and I want to be a grandma, work again go camping again and be who I was before this disease hit me like lighting. Please can anyone help ???????
I am going through this too
Thank you.
Diagnosed in 2014..
Have you ever heard of the Weimar Institute in CA?
I have Lupus for 5 years.... I am 19 years old from Bangladesh .... I think my skin is getting worst day by day... doctor prescribed me two Naproxen tablet per day... vitamin D3 tablet daily one piece, folicacid tablet daily one piece and methotrax 10 mg, one piece per week.... I am getting tired of this medication.... :(
Hi try removing gluten from your diet. This has worked wonders for me. All the best
@@elmatt4496 👍👍
Consider a non processed vegan and gluten free diet.
Your experience with the Lupus 'establishment' echoes mine with ankylosing spondylitis in New Zealand.
Not enough is being done to advance the health of those with autoimmune conditions, specifically with diet.
Have you seen the paper relating diversity of leafy greens to the diversity of microbial? It would seem better performing immune systems have more diverse microbial.
Relating that to the work of Prof Ebringer et al regarding the role of the klebsiella bacteria in ankylosing spondylitis makes a lot of sense to me. Wondering if it is similar to Lupus.
Your conclusions seem to be very similar to mine, I would presume that you have read similar research to me.
By the way, the only health providers who I consider to be fully on board with my recovery is my physiotherapist.
Is Lupus curable?? Please tell me
Yes! I did
Address leaky gut and food allergies! Avoid gluten and dairy.
Cknsider a non processed vegan and gluten free diet.
Avoid tomatoes or anything tomato base too such as pizza, ketchup etc…. Diagnosed in 2013. Lupus is not curable, but it’s manageable.
@@ajura8926 is it advisable to get marry with lupus patient ?
This is a very good video I have been diagnosed two months ago with boarder line Lupus and waiting to see my doctor and of course I'm very concerned and worried
I wish you were able to talk to my girlfriend. She is an amazingly stubborn woman and refuses to read anything about Lupus. She doesn’t want to know. I truly wish there was a way for you to call and talk to her about it and explain to her how to go about managing living with her Lupus. 😭😭😭😭😭😭😭
Perhaps send her some of the you tube videos. Let her know that you can absolutely thrive with Lupus but it starts with understanding where to start.
I love that you're trying to help her. Thank you.
Haii mamm I am also suffering from lupus and now I feed my 5 months old baby my lupus syntoms will appear now plz help mam what can I do
Great video👏👏👏
Where is your practice? I'm currently in Atlanta. Just found out that I have mixed connective tissue disease along with the lupus.
We are located in Johns Creek, GA! Moving to Suwanee, GA in a few weeks. You can find our address on our website www.alkalinewellness.com
CAUSE LEAKY GUT.
LINDA B
What the fuck ever.
And the cause of leaky gut... Gluten
El Matt
That is not true. People can develop an allergy to food at any time. There is so much that you don't know about autoimmune diseases.
😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱
Autoimmune diseases like Scleroderma and Multiple Sclerosis and even Rheumatoid Arthritis are genetic meaning someone from your current families generation could have had the childhood form or maybe the adult form.
😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱
So many of you guys think oh I can just cut out gluten or dairy or animal products, but what you are doing is hurting your health. There are doctors that can't be trusted and they're full of shit and you are saying I'll believe everything that comes out of doctor Clint Patterson's mouth.
@@jacquelinesmith-jackson2815 It's a suggestion. Chill.
So true.... people with Lupus should consider a non processed vegan and GLUTEN free diet.... especially if they have kidney related issues.
Yeah I stopped putting my confidence in doctors I started getting educated about all my meds.I always ask why I'm curious why this why that I actually just got off prednisone now the conversation between my rheumy and I is a healthy convo because she knows she can't just randomly shove toxic meds at me.
Have you tried CBD. I also stopped trusting doctor after being given Cytoxan which one of the side effects happens to be infertility. I gave them my body to do as they pleased because they assured me they’d get it under control but in the last 6 years since I’ve been diagnosed I’ve had 3 flares. After I recovered from the last flare in December of 2017 I did a lot of research. Vegan diet, Alkaline vegan diet, juicing, pretty much anything that sounded like it made sense. Then I read about how THC and CBD help tremendously with lupus and how they replace the standard meds. You have to see this with an open mind. I was totally against cannabis but only lupus patients know how terrible it is to go through flares. I’ve been off my meds since the beginning of 2018. I’ve been using CBD daily and maintaining a vegan diet. I’ve also been drinking alkaline water with a ph level of 9 or higher. I don’t know if it really works but I haven’t had a flare or symptoms of lupus since I started. I hope this helps anyone who wants to look for an alternative
@@Honeybadgergaf Also consider cutting bout Glutten
I have lupus and I just started my first treatment with beniysta do you think that this is a good treatment for lupus patients I am so tired of being on the steroids it's the best and worst medication Love to hear your feedback 💜
It's a good treatment if it works for you, but like anything else, it may have unintended consequences. Keep Lupus under control with benlysta and work on your health by eating a clean and anti-inflammatory diet and eventually when all is stable talk with your doctor about tapering off. No long term research on Benlysta, its still in clinical trials and limited data. I can tell you I've done it for over 15 months and am tapering now and working with my amazing Rheumatologist to do so. I am vigilant about my diet, exercise, and stress load.
Dr. Connie Jeon thank u
i have joint pains,my esr & ana are high.my wbc, rbc & platelet are low.i have done rheumatoid panel,anti dsna and anti sm all are negative. my doctor prescribed me folic acid onlyIs this lupus? everytime i shower i loose around 20-25 strands of hair.im active during the day and feel tired in the afternoon. i have rashes in my arms.but not in my face.my doctor suspects its itp and just give me folic acid to boost my platelet.and she cannot roll out lupus because my lupus test are negative. what do you think is this a mild lupus?
I have Lupus and benlysta was bad for me. I have been having Lupus since I was 15 and now I’m 40. I had many hip surgeries that required replacement 7 times. Partial shoulder replacements (both). Benlysta caused me to have more infections than usual, stayed hospitalized in ICU. I had a breathing tube down my throat. It was horrific.
Same thing for my mother, that`s so sad :/
How do you get "Leaky Gut" by eating high fructose corn syrup/ corn syrup in food, causes pin holes in your intestines, and starts LEAKYING in your body = Lupus.
*says a very long sarcastic* Yeeeeeeeeeeeeeeeeeeeeeeah.... regarding the Lupus 'support' forums for UK too. I've had Discoid Lupus for 14 years, it's destroying my face, scalp and ears. I found several sources on foods that should be avoided and ones to eat more of. I excitedly shared the clinical website (not teen year old blogs) on the forum to have it removed and a private message sent from admin that I cannot give medical advice as I was not a dietary clinician (they didn't even inquire about any qualifications I might have) so I could not give out advice on their forum. A couple of months later I put on the forum that I have found a bees wax skin cream that did wonders for my extremely sore, itchy, and painful skin... but again they removed my post and gave me a warning that if I did it again I would be banned from the forum. I left.
Yeah I don't bother with those message boards anymore. I think big pharma has their hands on those boards. It's now full of people whining and telling each other to take their meds. Most of them are hopeless, sadly. If you post alternative solutions you get your message erased by admin, like you have, or bashed by other members.
@jessica powers Thanks I do not have the SLE type of Lupus though. There is more than one variety. Mine is the skin lesion variety. I'll email you anyway as nothing has worked for me so far.. Not even to calm it down or keep it under control. I am in grave danger of losing my nose and ears now. I'm not sure if I got the lucky type as I will only be losing my looks and not my life. SLE can be fatal.
Ok so......what causes Lupus and how do you cure it...??
There's no one solution for everyone and all diseases start in the gut. Just notice that Western medicine doesn't place emphasis on gut health and education. As long as people can stay sick, the medical professionals can prescribe a bunch of pills for us to take, thus making money. Do everything you can to educate yourself about the gut and look to eastern medicine for that.
Consider a non processed vegan and gluten free diet.
I was diagnosed with lupus after many years of suffering. Now I am totally alone; I stay with my son and Wife and 3 of the most beautiful grandsons you ever want to see. There is a big problem, They hate me; my Son and Daughter-in-law, I feel it is killing me and I do not know what to do; my life is a constant day dream of killing myself. I am told several times a day that they hate me, they won't talk to me; but worst of all I have no place to go. what would you do?
Michael Bianca Bouvier I don't have an answer but want you to know your not alone. Forget them, their toxicity is worse than the disease itself.
Michael Bianca Bouvier there’s several support groups of lupus patients that can help you see that u have support, a family- search on Facebook- lupus loud lupus 365 and lupus princess warrior. I pray that you find peace and a better situation.
Michael Bianca Bouvier try to help them understand.
Show them videos. And dont forget to watch something funny. It really helps if only for a bit
Michael Bianca Bouvier they are fools why would they hate when you have an illness ? life can turn back on them and they could end up with a severe illness, how would they feel if they were hated for having an illness? they are ridiculous. I am so sorry you're going through this I am also suffering from lupus I've been having this illness for 18 years already it's a terrible illness and I just wished that more people would understand it and instead of judging us they would give us a hand for crying out loud.
Dearest Micheal. My heart breaks for you and many prayers to you. This disease takes everything. And yes many many people in out lives do not understand what we are going through. I absolutely hate it when someone tells me I look good when every single joint, none in my body are screaming in pain. Even the Drs. do this to me. I'm extremely angry and frustrated myself. I was diagnosed only 4 years ago. Symptoms started at 26. Seen the 5 Rheumatologist in my area and none picked it up. Even with positive ANA tests. The damage has been done to every organ in my body. It was detected during a gastrointestinal surgery. Then 3 months into it I got a severe rash of redness, swelling skin like leather on my hands, chest, some in my face. Doctors said raynauds syndrome. Usually one gets a secondary illness to lupus I was told. I want to scream at every one of my 7 specialists and friends. Friends that I have left. Can't you see what is happening to me!!! I can't make stairs, days no weeks I have to stay in bed and at home due to being sick and in unimaginable pain that uf they felt it for a day they would be running for the bridge. I miss appointments due to being so sick I can't get there. It's difficult to get out of the bed to go to the bathroom. I'm looking the ability to take care of myself!!! Please help me. And yes on one cares at all. I'm terrified of what is going to happen to me. I have no family and there as no support groups for lupus in my area. I've tried all the treatments. Forget it I'm not going there. If I had 20,000 I would go to Mexico for the stem cell transplant. Which Form the research
Thanks for sharing your story bless u
did you say "Lupus begins in the gut"? would you please expand on that? i feel this could be incredibly important...
All diseases start in the gut and unfortunately Western Medical doctors don't know a whole lot about it. If you genuinely want to learn about gut health, start researching Ayurveda and work with a practitioner who has a proven track record.
Gut microbiome...you have 3 brains...one in the head, one in the heart, one in the gut. Fact: gut produces many times more serotonin in the brain. Its but one layer of cells thick. It can be damaged by emotional trauma, heavy metal toxic burdens, diet and particularly gluten molecules....wheat isn't what it used to be. Gut healthy is ESSENTIAL to well being everywhere else in the body. When you take one round of antibiotics it wipes out whole populations of naturally occurring beneficial bacteria in your gut which job is to break down the nutrients from your food: poor gut health equals malabsorption. It can mean emotional issues. It certainly can create depression and anxiety. It is can be so out of balance you can develop SIBO. You can see that information on line. Every person with autoimmune issues has a gut issue. All issues begin in the gut because the gut is where we absorb our nutrients but it is also another important and key place where we make the hormones for our happiness. It is also an emotional processing centre. Also when the gut is inflammed from toxic burden (do you use shampoo that is 100% clean?) this leads to systemic inflammation....lupus is one aspect of inflammation. Now as far as natural products: ignore all labels that say "natural" which is but one of many dozens of chemicals used to lace our food. Glyphosate (Round Up) is in every baby born with autism. That smacks doesn't it? Glyphosate ruins the microbiome of the soil and it ruins the gut microbiome of a human. And who is not banning this neurotoxin? the government....they don't ban something with high revenue. Anyway, as for your gut, wheat contains sick amounts of this poison. Why eat it? Its in everything. Going clean is hard work. God Bless
Sometimes people say the most absurd and stupid things I have ever heard.......... I mean we are all humans and a gluten free diet only works if you have Celiac Disease.
😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱
😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱
Someone needs to tell that moron to stop giving people the wrong information. It truly is insulting because those people have no absolutely no education.
You read the stuff online and you know what those things are sometimes true and sometimes not. Almost everything is plagarized.
Are your blog posts long form sales pitches as well?
Helping me get rid of my Lupus infection is what I will never forget in my whole life #drogoh. You're welcome to my family, thanks for saving my life .💛💛 .
Thank you. This how I feel. I'm 66 years old and was diagnosed with Lupus 4years ago. I take Plaquenil and see no visible relief for my ills. Drs. give me the impression that there is no cure and no relief in my future.
If you don't see relief, there's no reason to stick with it. I want to empower you to take control over your health! Talk to doctors about potentially trying another treatment method. Additionally, build your health with things you can control, such as diet, exercise, and stress management.
You should consider a non processed vegan and gluten free diet.
i'm 54 years old was told in mid to late 70's i had lupus,and yes i'm male,was told wouldn't live to see 18 or even 21 with out treatments,so took everything and anything they gave me made it worst,figure i wasn't going to live long so right after high school and instead of going to penn sate on full ride,i joined the army and ask which one had the highest death count,easy combat engineers,between to fighting army's try to make a way for your side to reach them,so they are trying to kill you,and then your men are behind you fighting them and yes a lot of us where and still getting killed by friendly fire ,now a days it's clearing bombs,mine's,i.e.d's that kill most of them,baby brother join my unit and got back a few years a go and as issues with what he as seen and being the only one of his unit still a live after his Humvee blow up,and was in any thing that was very good chance of me dieing,but never did,doctor stop all the meds but for pain,anxiety when on base,and for skin rash's and mouth sore's,now since my lupus is getting so bad i can barely walk,i was re-tire from Federal government in 2011,wish i would have die while on a mission or case,wife and son would have been set for life with a very great health ins. i got through the army before they knew i had it for sure,no only 53 feel like 100 every broke bone,stab,shot,wound hurts on top of the nerve damage from either fighting or the lupus doesn't matter one make the other worst,but before i was released the doctors for the unit i worked for,granted my wish,just make me comfortable with pain meds,and Xanax, all so gave me bi-polar and phyco meds so no one would bat a eye when i turn done trying drugs or drink,kept my own bottle water in a locked cooler in my armed van,with my 4 baby's in side no one wanted near it or more like them,yes i have o.c.d. and paranoid about ever thing
Hi there TheWollff
I trust that you are still with us. Your account was compelling reading. There are so many things you wrote about which echo my feelings exactly and I believe when you penned that response to the video on Lupus it came from a deep place,
Struggles and daily battles seem to be the norm as a lupus patient. I use the word patient deliberately, because, once you are diagnosed, it is endless hospital admissions, pills, pain, etc. To-date I have been admitted overnight, shortes stay 5 nights, longest 23 days, 22 nights in hospital with a Lupus flare-up.
As the good doctor says in the video, the Medical profession are guessing most of the time. It is a Mysterious illness. No known cure. Therefore it has to be managed. This is where Net-working comes in.
If your Mobility has been affected like mine, you may be limited to home. Or if you do venture outside, may have what I call Payback Days, when you are assaulted from head to toe with pain because you exerted yourself the day before. It can be helpful to talk about your condition and not bottle things up because LUPUS not only affects your physical body but also your Mind. I am believing things have improved for you since your post 7 months ago, and you are getting all the support you need. Take care, from a fellow Lupus Experiencer.
Sukie O Clarke:
Those “payback days” are the only thing that stops me from fully enjoying a day that I otherwise feel somewhat good on. They are hell and misery combined and one happy day out ALWAYS results in a minimum of three days in bed. I almost feel like I’m being punished for doing something remotely “fun/happy” for an afternoon on a day in which my pain is tolerable with break-through meds and my brain fog and mental state are both as clear as they can be, within reason. Ten years later and my “payback days” are just as bad now as when they first began in 2008. It’s extremely frustrating.
Are u healed now
Lupus could be cured. Sad part is it seems more money in making us take pills daily. So sad. I got covid and right after that had the EBV virus and after that Lupus. I've decided not to take meds and will go when it's my time. Best wishes!
Hi, I love watching your videos. I have not been diagnosed with Lupus, but I have all symptoms. I itch all day long but no rash.. I get butterfly rash on my face and just recently my hair has thinned out. Had blood work done ,positive ANA .. My iron is good negative for SLE. So I just recently ordered supplements. CoQ10,probiotic and prebiotic tab . Turmeric, folic acid and vitamin c supplements. Changed my diet. I can’t seem to get enough salads. I love them and I have always worked out 3 times a week. But lately all I want to do is rest .. and on top of this I tested positive for HPV**** so I’m open for suggestions 🙏🏽
Hi Keion, those are good changes that you're making but Lupus diagnosis takes up to 5 years. From what you've shared, your immune system may be triggered but not enough to show up on the typical Lupus serology. I would find a doctor that does AVISE testing to take a deeper look. If you have insurance at most you'd pay out of pocket is $45 and it's the most accurate test for Lupus which would also show other markers to rule out other autoimmune conditions. If you cannot locate a doctor near by, I am able to send you the lab kit myself but it would be $145 (it's at cost I don't profit from it). As for the supplements, make sure that you're getting the good quality highest grade supplements as not all supplements are created equally. CoQ10 is good, a good quality multi strain probiotics are best for those with autoimmune symptoms (lactobacillis, Sacromyeces, and Bifidobacterium strains are best). As for the turmeric, I recommend a good quality curcumin and would add a good quality fish oil. (If your're interested in what I would specifically recommend, email me at info@alkalinewellness.com). Prebiotics are good but with you eating salad, that should be good so as long as you add more colors to your vegetables, I believe unless you're not able to consume the vegetables and select fruits, it's best to get it in foods. Thanks for the feedback!
Dr. Connie Jeon Awesome!
Thanks for your quick reply, I didn’t realize I was signed into my son’s TH-cam account. My name is Chereese and I have signed up for your news letter. I do have insurance and already have an appointment on the 10th to do a full lupus workup” is what the doctor called it. Also my recent lab work reveled my platelet count is high.. my vitamins are normal purchased from Swanson.. my probiotic contains bifidobacterium and nutraFlora. But I will take a look at the supplements you are suggesting. Thanks again. I will also email you too
Amen sister 🙏❤️
Esp when your Ana goes pos and neg .
I’m sorry I should’ve said that .
Dr Sebi healed it
Thanks! I need to look into Dr. Seibi b/c my doctors are getting paid whether they can help me or not.smh! Taking all these toxins/poisons and for what? My cousin and aunt both died this year from complications due to this d*** disease. #Frustrated777
epidemic???? really? did you really say that?
🙂
Medicine hasnt got a clue
What r u up to. U keep on. Talking n u don't agree to anything, what is ur point in talking, did u resolve a problem,
F lupus
So if u have lupus how come u didn’t lose ur hair and no rash on your face
Umhra, I did lose my hair and had a very bad rash. At the onset, I had severe hair loss in patches creating baldness on my head. It was awful. Key is to heal your gut, improve your nutrient absorption, and decrease inflammation. Easier said than done and it's always a work in progress.
It doesn't effect everyone the same. Some people might experience joint pain and others might have kidney issues. Its a systemic disease so it can surface anywhere almost. Its different for everyone.
I loose my hair more when I am not on top of my nutrition. Ironically my rash comes and goes. By the grace of God I will say my rash is luckily (for lack of better words) not too noticeable. 'Knock on wood'. I feel for those who have that distinct butterfly rash. I have many people I met over the years with the butterfly rash that is very obvious. But on the other hand these same people don't all have the systemic issues I have. I have learned over 10 years every Lupus patient is very different. That's another reason why it's so hard to diagnose I bet?
JK H same here. I don’t have the “butterfly rash.” I actually have the “backhand rash(only one side of my cheek! Lol & it looks like I got backhanded. So, that’s what I call my own rash! 😜🤪☺️)I have “thinning of hair.” But not any “patches” of hair lose. & for me. I’ve come to terms that if I ever lose al my hair. I’ll just buy me a pretty wig. ☺️😁
haighyvshaighy Exactly what works for you may not work for everyone else. I have lupus as well I have joint pain, kidney damage, brain fog, seizures, hair loss, discoid lupus, etc. I take numerous meds for almost 3 years I am sicker than I was before I started getting treatment.