Thank you for making this movie and for drawing attention to these debilitating and chronic diseases. This is critical to inform as many people as possible. I have multiple autoimmune conditions having had mold exposure in the work place. I was not diagnosed until I was age 65 and I've spent the past 15 years reading, researching, visiting doctors and making diet and lifestyle changes. Living with pain and exhaustion, people's life are altered and life is never the same.
There is a documentary about lyme disease on RU-vid. In it a doctor suffering from lyme disease EXPOSED how the GOVERNMENT DELIBERATELY CHANGED the test for lyme disease which is EXTREMELY OUTDATED ANYWAYS, that further prevents others from getting a PROPER DIAGNOSIS!! He also was doing breakthrough research and found that lyme disease is formed amd transmitted by a SPIROCHETE!! This is why it STAYS IN THE BODY PERMANENTLY because the antibiotics CAN'T BREACH the HEAD of the SPIROCHETE. He died unfortunately before he could complete his work because the lyme disease infected his heart. 😢
For the young woman with Lyme, the university should have a disability office that works to help a student manage completing the degree~ accommodations that the college needs to make for her so that she can learn. The building with the water damage = likely mold spores is unsafe for all students not just for her, and needs to be repaired. The class can be moved to another building.
Sofia there is a video on RU-vid about bee therapy helping bigtime w/lyme disease. The woman discovered it, being ready to die because of the advanced lyme disease, after being attacked by a swarm of bees. It made a miraculous difference n her life. I wish i knew the link for this video but it shouldn't b too hard to find? I hope this helps since u've been told ur illness is incurable. Take care God works honey. Maybe this is ur answer? Idk? 💛🖤💛
ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-QDMu7dkkZqE.htmlsi=yaOsC8P9Y7F8xnLD Greetings from Australia please have a look at this , I am trying to do carnivore as I also i have a neurodegenerative disorders i dont think I have anything to loose i am 70 now , feel very sorry for all of you young people. Yes with sickness comes loneness , friend and family become scare.
Im from India the health care system here dosent even know chronic pain exist its so hard fighting thiss disease when we are in 3world countrys its even worse hope one day our health care system an our people build such attitude to fight against pain an help an understand each other.
I was diagnosed with lyme 2 years after symptoms. I have been on 29 to 30 antibiotics, numerous supplements and other medications. I have since the been diagnosed with ME/CFS. There is no cure for lyme that has been found late.
This documentary and this subject deserves so much more public attention. So many people are suffering. And the government and the ignorant doctors are completely letting so many of these poor people down. It's a complete disgrace and a total indictment on all the arrogant and ignorant doctors who put these poor people through hell. They shouldn't have to prove over and over again that they are suffering, just because doctors can't always find a clear diagnosis. The way doctors treat these people makes me sick.
We cannot diagnose anymore as Doctors remain too specialized. No one treats THE WHOLE BODY anymore, if its even REMOTELY difficult to diagnose, they just refer you to another specialist... And then your just thrown around like a hot potatoe, and then after a couple years, they go to Mental illness...
I like the fact that Leo and his family give everything to the lord instead of putting the whole gay pride thing in there. People in this country need to put God first. I have MS and I get up everyday and go to work. I thought this was a story about disease not gay pride
Oh my goodness! Just horrid! Leo and his beautiful family!! And precious Sophia, tears your heart out.and darling Clarice. My God my heart breaks for this lives that are simply ripped apart by illness. We don’t know what lies ahead in ours lives. I had bad Cancer 18 yrs ago. Now I’ve found out the chemo that saved my life has destroyed my heart. Congestive heart Failure. We must continue to press on and find love and joy where we can 🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼
Figuring out how to present to the Dr’s is a huge deal. Giving is SO IMPORTANT it just looks different than it used to be. I take ACT and my faith in Jesus and great support system help me. 🇨🇦 ❤
As someone w Ehlers Danlos Syndrome, a rare genetic progressive illness that cuases us to breal & sublux joints, severe chrons ans bowel problems, dysautonomia & over 50 symptoms including chronic insomnia, hypersensitivity to foods and chemicals..i live in NJ where medicaid only covers below the standard of care. It is sickening how little resources there are. I became a Reiki mastee. A holistic health ans nutrition coach while learning the power of internittent fasting , keto diet & strength training w red light therapy can reduce symptoms 50% or more. We can heal.
I have AS, I was diagnosed at 18 after 8 years of fighting for my right to be taken seriously by doctors (who told me I was fine). I'm turning 21 in two days and even after an invasive hip surgery two years ago, I'm struggling to cope with the continuous pain. It never goes away, it's always there. This is the first time I have ever seen a video of someone recounting their experience with AS, and I feel so seen. Thank you Victoria, from the bottom of my heart <3
I've have Rheumatoid Arthritis and while I hurt and struggle with crooked hands and joint pain all over I just can't imagine going through what these people have. Those video shows how important it is to vote blue. We need Medicare for all
That’s the one thing I am great-full for as a Canadian. Having full healthcare coverage. Our taxes are over half our income but everyone is covered accept medication. We pay for meds. One thing the Canadian College of physicians and surgeons do not recognize Lymes disease. I even heard a doc say there is no Lymes disease in Canada. I call bullshit. If it’s south of the boarder it’s here too. As if birds and wildlife packing the critters don’t cross boarders.
Doctors need to hook up with therapists. Patients do not know how to manage life after finding out you now have a chronic illness that will leave you disabled for life. I had three children to support. Divorced and feeling so lost. Trying this and that. Taking the long way around in life because I didn't know how to maneuver well as a disabled person, let alone parent.😢
A medical grade IV of hydrogen peroxide will kill the Lyme spirochetes…not the store type…also treats CV…the treatment Trump was excoriated for suggesting “ bleach”… for vessel treatment…I had it…after malaria…
@@jodisoakenwolf1950. I’m seeing a lot of doctors today promoting carnivore and keto diets. Watch. Hope for MS. Can be found on RU-vid. Or google. The cure.
My heart goes out to the chronic illness and chronic pain warriors who are struggling to cope on a daily basis. Not being able to have control over your body and mind is a terrifying experience. I pray for strength and healing for all those who are suffering, and their loved ones as well. 🌹
I am sorry for all of this suffering and limiting but it can be put on a scale, don’t call this a 10, lets slide this over to severe, than lets move it further over to damage, little more to permanent damage, now a big push to permanent severe damage, now lets include reality, say being alone and the scale gets pushed further t 10, now lets move the scale more, severe permanent damage while being alone and being a caregiver, slide screeching screech, Ok lets move that scale now and lets get it all the way to 10, severe permanent damage while being a single caregiver to a disabled person who is carrying there own scale, almost most there, now you are severe permanent damage person caring for the same different familiar. I don’t have anywhere else to push this scale except push it over!
The next time I complain about cellulite, a period cramp, a new grey hair, a bit of flab here and there or a small ache due to whiplash... I will remember these three, and stop whining.
I have Fibro, ME/CFS, RA, and all that goes with those. In addition, my spine is a mess so I'm in a motorized wheelchair. No pain meds! No family support! Friends can't understand (maybe someone could if willing to listen). Fortunately, I am an introvert and love my time alone, however, I would like one person willing to listen, one time.
Watching this as I'm on the edge. My heart breaks for everyone going thru debilitating chronic pain. Ive been 95% bedbound since june, no pt-no-home health care etc, all ordered but nothing. Last time I worked was 2012, applied and denied for disability. Could not reapply because I had no more work credits, and I'm married with my spouse making too much at 45k. Just mentioned that in hopes someone knows something i don't. I take an opioid but ive been cut off multiple times for no reason, literally from 90mgs for 2 years to dropping cold turkey with no explanation and no tapering. The withdrawal almost killed me. I'm in fear every month that it will happen again, it's not even enough, if it happens again it will kill me one way or another. I have a Tethered Spinal Cord, detethered but it retethered. What people do not understand is that NO ONE WANTS TO LIVE LIKE THIS! No one deserves chronic pain.
Sorry @Saggy91, I know what your talking about and the bed bound is scary, do you have some sort of contact since your mostly in bed?? I never heard of a tethered spine, not sure I want to know because I have a problem visualizing things since you say cut and I get visions. No, no one deserve chronic pain, it’s something you bolt from not bring along side of you and withdrawals are the ugliest thing to feel and when you know you will face them and they inevitably build makes me so angry. I have severe AS and severe damage from inflammation of AS by now being hunchback in a wheelchair though I can walk I am a caregiver to an adult child who is severely hypotonic, I gave up 10 years of opioids, NSAID and Fentanyl and went off cold turkey, that nearly killed me. I’m old and in Canada, it’s better here, I hint your in the states, can’t believe people don’t have healthcare. Hope your better today.
I wouldn't stop trying for disability if it's a different diagnosis like a depression on say a bipolar level of severe depression due to the illness but not caused by....As for your pain control they can NOT legally just cut you to nothing even though it's beyond WRONG taking away the only bit of relief they have to taper you i forget what you say to the doctor but you can probably find it on anything regarding the question of your overall health care .Also if your not seeing a pain management specialist bord sertifed i really hope one is close enough and taking patients they are trained in pain control And a orthopedic doctor i know it's alot but you don't no one deserves to live a life of that level of pain...
@@Mckenna12502people have to know that they will almost deny everyone initially so you have to do the appeals every time but make sure you get a lawyer who does nothing but disability cases and have them help you with all of this. I tried doing it without a lawyer and it was getting so upsetting. The lawyers who do disability won’t need to be paid unless you win, then I believe you will have to pay them 6% of your award. Don’t give up. You also need to focus on the fact that you’re not reliable anymore due to the fact that your symptoms come and go and change every day or even several times a day. There’s things like the sweating, nausea, heart racing, etc that make any pain conditions worse so think of everything that makes you feel bad. Sometimes a person can’t tolerate heat or cold and many work places have constant air conditioning. It’s ridiculous that we even have to worry about how we’re going to care for ourselves when we live in the richest country on the planet.
I have a similar 'brain pacemaker" called a Vagus Nerve Stimulator. I have it for my seizures. It sends pulses via my vagus nerve to my brain to control my seizures.
Obama Care came in and my two Grandsons have more difficulty getting the testing and treatment needed. It wasn't like that before. One Grandson has Spina Bifida and the other has Neurofibromatosis type 1.
I remember watching documentaries like this in the 1970s. I think it's important to document a loved one's progression of their condition to bring awareness to others
I have reamatoud arthritis since i was in my 20, pain all over, got worst with age, im 56 now, took humira, injections,prednison, whats working for me now is rinvoc, has acary aide effects on bottle, but if i dont take this pill, ill be like an old 80 year old lady, may god bless you all.🙏🏼
8 years ago I was diagnosed with Ehlers-Danlos Syndrome (classical type) . My life is now mostly spent in my bed. For all that suffering with chronic conditions: big, warm hugs to you. ❤ For all healthy people: don't take your health for granted, and a hug to you as well. ❤ Such a great but heartbreaking documentary!
I too have EDS, and deal with so many symptoms including joint pain, GI issues, and vertigo due too my neck not being stable. Stay strong my fellow Zebra.
i wonder what her CPK levels were...the one who went to the Rheumatologist. My CPK was as high as 3,500. The doctor thought with my CPK numbers I would be in a wheel chair. The normal level CPK is no higher than 150. I never got a clear diagnosis from any doctors over 20 years... just a whole lot of tests. My muscle weakness hurt so bad all over. I handled my condition with "mind over matter." I refused to go on disability. I kept telling myself i dont time to be sick...i have too much to do. I went in to become a Volunteer Firefighter and trained with the State of New York.
About A.S. it's not supposed to be deadly, I feel annoyed taking resources to watch (computer not being good for my disease...) and would like to get good, full info to understand.They all have better than mew in their social lives and psychical state. Maybe I shouldn't watch this in case I get depressed at seeing the contrast to how bad I have it and what I have been exposed to ( mistreatment andtheft, withheld healthcare and social life.) Wow, to have a boyfriend a dog and an outdoor space! What kind of IR sauna does Sofia use, NIR or FIR ? How good thatt she gives ashes and blessings! Gosh, fantastic improvements of Leo's! So glad for him, and for her who went on desert therapy. I wish I had support like they do. About Charis who got disability in the end; - what did she live on before?? How does one find and get in touch with.. health advocates? I have got so much worse from getting abuse, deception and denial and aLoneliness instead of fairness, openness, honesty and adequate examination, Personal Assistance, body-psychotherapy and physical treatment.
Oh dear, this is sad to watch. I see 3 things at once that Leo seems to be doing wrong: Drinking soda-pop, eating what looks like spaghetti (with tomato sauce?) and having tattoos...Please rethink, research alternatives, because since when did suppressing drugs actually heal anything? Research natural medicine/treatment including psychical-spiritual and dietic. Choose healthy diet and lifestyle and remove the tattoo. John Bergman's earlier long videos are really good. Surgery should be the last option when everything else is really done, because it is dangerous and might not succeed or even do harm. Sofia need not be afraid of the forest, which has healing; learn how ticks work and where they are(not). Inspecting one's body afterwards and brushing, is good, with a white sheet under your feet. then kill any ticks. They take time to seek a feeding place, and it often ticles where they crawl (catch it). And it itches where they bite, so take it then. I learnt that it takes 24 hours for them to emit any disease if they carry some. And one can wear light clothes where they are easily seen in case you get some. They don't climb high, are vulnerable and always climb down for the night, to get moisture! Aren't robots..
I wish I had my old body back...I wish I had my brain working correctly. There are bouts of depression that I am better at keeping away. But I can't get my family to fully understand the feeling of being a stranger in someone else's brain. Some times I'm better but still I will only get worse. Accepting that I am not nor can I ever be...who the girl from before was...that's complicated. Sometimes you have to learn to say goodbye to your own reflection of who you were.
