Amyloidosis is a difficult disease to diagnose. After two years of doctors and clinics, Mayo Diagnosed me with Cardiac Amyloidois on April 13, 2017 and we are moving forward with Treatment.
I am being treated at Mayo Clinic in Rochester, MN consisting of Chemo treatment (Cy-Bor-D) which is administered once per week. In addition, I am in a double blind study which infused me with anti-bodies once per month.
My intentions are to show my journey for success. - Dan Lier
Hi Don. You just described complete my situation. I have been diagnosed amyloidosis but they don’t know yet what organs has been affected but I have proteinuria and I think my liver is enlarged. I live in Northwest where they are no specialist by my knowledge. Can you send me your doctor contact info?
Hi Dan, I am very glad you are getting better. I was diagnosed in late 2020 with stage 1 AL light chain amyloidosis, had in early 2021 six weeks therapy with CyBorD and mid April the autologous stem cell transplantation after high dose chematherapy. I am "clean" since then and take no medication. As a passionated cyclist I started cycling a month after the transplantation, constanlty gaining my strenght back. Never felt better in my life! Greetings from Switzerland!
Can you help me also I am in egypt (arabic country) with renal amyloidosis and on dialysis but not diagnosed type of amyloidosis till now ....only on dialysis @@amyloidosismyjourneytosucc4995
Gosh you sure have been though so much. Kinda like my story , but yours is much worse. Dont ever come to Fl looking for medical help. You will be in big trouble!! This vid is from 2020, and I saw the one where you were in a study maybe like 5 yrs ago . Those are the only 2 I have seen. I subscribed. I would like to know more . Did you have a high kappa / Lambda?
Great to see you again Dan! I was diagnosed in 2018 and am on kidney dialysis. It's not fun, but I still feel so much better than I did before my kidneys failed. I had chemotherapy for about 18 months in 2019 and 2020 and my numbers are still good. I'm so happy that you are doing so well Dan! Keep us informed!
yes I did have night sweats. My heart was becoming less effective… couldn’t get up stairs, or exercise. Bone marrow biopsy and fat aspirate at the Mayo Clinic in Rochester, MN. I live in Vegas and had seen “specialists” for two years… yet they were clueless.
As a certified Ayurvedic Practitioner I can say for sure that Planet Ayurveda's Boswellia Curcumin Capsules, Aamvatantak and Navkarshik Choorna works amazingly well. Removes toxins from the body and possesses immunomudulatory properties.
Hi… they were considering it, yet i was too weak. So, no… I didn’t do it. What are they suggesting for him? How old is he, and what type of amyloidosis does he have.
Praying for you! My father was just diagnosed w 2 types of amyloidosis via Baylor in Dallas area. Im still awaiting news of which types. He is 78 yrs old. I hope medicine and science can help beat this unusual disease.
Thanks for sharing your journey Brian and Dan. You guys are an inspiration and your positive energy is felt. I was diagnosed with AL amyloidosis in August 2023. I started weekly CyBorD+ Daratumumab in September 2023. I just completed my last treatment in March 2024. My hematologist said I have achieved complete hematologic response and my light chain bio markers are with in the acceptable range. My BNP went from 700+ to 200. I'm being monitored monthly for relapse and hope and pray that the amyloid proteins don't start to reproduce. But knowing what Brian went through with stem cell transplant is comforting that there are other options. I watched Dan's RU-vid videos from the first treatment to the last and compared it to my treatments. Thanks Dan!
Wow, thank you for your kind words and the update on your situation. Incredible results you’e achieved!! Congratulations, and I’m glad you were able to gain insight from my video experience. Keep up the great work!
Ok bro everytime i go to sleep my dreams is insane dude like im fighting with a kid thats at my age i just telecines them i just fly them away like they disappeared and sometimes im in world war with the germans and sometimes i just fly with some people and when im sleeping and im paralysed in my dream i would look around and see a demon smiling for no reason and my body feels weird and then im not paralyzed anymore i just beat the shit out the demon the demon runs away for no hell reason i just have a rpg in my pocket like how does it even fit in there and sometimes i dream driving a tank or having the things that i wanted or losing things like sometimes its to blurry i cant see normally but one dream i will never ever forget is that when it was the time for school i fell back to sleep and i remember everything i told the people what was the time in reality and this is a dream and say that this thing is fake and what was coming sometimes i was in hell i was burning cant see or breathe move i couldnt even scream or talk and felling weird things and i will be stuck forever and one night since i was younger i dreamed about slendrina i was in a house alone and there was four ways to go so i got in the way and i heard something that was a sound it was slendrina when i looked back and i runned faster than my grandma falling down the stairs then when i looked back slendrina was in my face like freddy fazbear she stabbed me and i waked up and i screamed so loud i could’ve even break the sound barrier and i explained everything and one night i waked up in the middle of the night i got to the door beans with blood came out of my mouth and nose i dont know why this happen i didnt really liked beans and one of the most crazy thing is that when i was young i would splash water or the electric wires for fun or the neighbors electricity wire and when i was young i eated so much salt i throwed up in the hallway to the outside in my dreams damn dude i have to fight for my life dude(so thanks for reading and you made me happy!)
So glad you’re doing so well! Hope to hear more great improvements in your personal battle with this most complicated situation. I notice this being a few years after this Vidio that our situation is coming more into the mainstream of doctors care (3/15//2024). I’m on Vyndamax for the heart issue of this situation. I’m fortunate to have insurance that will pay for this drug as it cost $800 a day for this med. I’m hoping that this drug will come down in price as It’s way to high for the average insurance situations. Anyway to all who have Amyloidosis may god be with you and help you maintain a steady course on your recovery programs. Jon
thanks for sharing Jon… and sending you good thoughts, energy and prayers. Lots of good things happening in the AMY world. I’ll be sharing some exciting news soon.
Amyloidosis management involves addressing underlying imbalances. Explore the potential of Planet Ayurveda medicine to restore balance and support overall health in individuals with this condition.
Hi Dan, I'm getting treatment #7 today with CyBorD+ Dara. I had my labs for key markers drawn last Friday. I'm following you all along your journey. Thanks for the wealth of information and videos with explanations of what you went through.
Thank you for your inspiration Dan. I was diagnosed with AL amyloidosis in late August 2023 after many tests, scans and bone marrow and fat pad biopsy. I'm on my 7th treatment of CyBorD + Dara and have mostly good days but Wed and Thurs are a challenge but I'm getting through those days and managing well. I have been following all your treatments along with mine so I have watched your 7th. I can say my experience parallels your's but you certainly bring a good perspective and mind set which I am very grateful.
@@DanLier thank you, friend. It’s really great to see you do what your doing. My father was diagnosed with TTR Amyloidosis yesterday. You’re inspirational and I hope my father has a disposition like yours when he gets to his 2 year mark
just re-watched the video you commented on. The leg pain from neuropathy. Neuropathy still here... not certain if it was part of the amyloidosis, yet docs think it is. Just maintaining.
Dan, did you have an amyloid accumulation or mass in those parts of your leg and now it's gone? If so that's amazing. I didn't know anything would remove the amyloid . I just thought it could be prevented from getting worse. What did it feel like? I'm just wondering because I have certain spots or areas of my leg that are squishy like soft play dough and not like watery edema . No doctor seems to know what it is. That leg is always in pain Did you have pain associated with the masses ?
Hi Terry... Did chemo from 2017-2019, now on a maintenance drug (non-toxic) and I'm doing well. Light chain proteins holding just over the "normal" reading... eating well, exercising and staying positive.
So great to find someone else posting the journey! I have been on Cy-D Treatment Chemo, and just had a heart transplant due to AL Amyloidosis. Good luck and hope all is still well with you, live long!
Change your diet….you have to go to an all green juice smoothie diet. Kale,spinach,red chard,green chard,dandelion. 1.5 to 2 liters a day … no processed foods…no omega 6 oils…only extra virgin olive oil.or avocado oil… eggs only pasture raised…beef only grass fed grass finished …also take high dose vitamin C powder bufferd 8000 mg a day…it’s will slow this progression down at least 70% in a 4 weeks …good luck…
I would say all plant base… diet is always the basis of any diagnosis. If any meat added, let it be chicken & fish.. mostly wild caught fish no shellfish
Hi, I'm doing well, thank you. On a maintenance drug (Vanclexta) to keep the light chain proteins where they are. Living a "normal" life, without the ability to exercise hard b/c of the congestive heart failure. Overall, doing great!
Thank you Dan and Brian! I haven’t been able to connect with any young people diagnosed with AL Amyloidois. I am a 42 year old white woman. I would like to know where I can connect with Brian to ask him if they treat differently for younger people since he was diagnosed at 45. God bless you Dan!!
Hi Dan my husband has just been diagnosed with the following Al-amyloidisos, Pre-fibrotic myelo fibrosis, Multiple Myeloma, this last one is not active. He started chemo 4 weeks ago and is 76 years old. Has suffered for years prior to diagnosis. Your videos have been a great comfort to us, and give us hope… So thank you. God bless you, and my you continue to thrive.
