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From what i understand the Mayo clinic in Rodchester would be best for Amyloidosis treatment center? Im getting tested for it this week.. thanks

Hello Dan! It's present day but I'm still catching up on, and drawing inspiration from all of your videos. This is Manny from Texas with a status of unknown/undetermined. Although I've had negative bone marrow and fatty tissue biopsies, am not ruling out AL due to all the symptoms I am suffering from. And like you back in 2017 - 2019, feel like I'm slowly dying from. Cannot agree with you more regarding Cardiologists and their dismissive attitude despite the gauntlet of tests. Putting my trust in Hematology/Oncology, and Neurology for now. And of course, the positive vibes I receive from you. Thank you for all you do, and look forward to seeing you Wed.

After several years of decline and misdiagnosis my brother-in-law was diagnosed with amyloidosis. He was sent to "the best in Connecticut" amyloidosis doctor at Yale in New Haven. Turns out the doctor was the only amyloidosis doctor in Ct... so technically, also the worst. He needed a life vest, which Medicare refused to provide. Instead, he was given a useless pacemaker. He declined rapidly, even being on chemotherapy and other treatments for this disorder. He died while my sister was downstairs and had no idea he had ended up on the floor. His son tried CPR, but he was never revived. If you ask me, some idiot at Medicare should be charged with murder. Oh sure, they saved the system a few bucks, but at the cost of his life.

I'm so happy that you're doing so well! I can't eat any dairy anymore, it upsets my digestive system and am taking Lomitil to help my stomach. I am still feeling ok and being as independent as I can. I was diagnosed in 2017. Thanks for the updates and treatments you've doing.

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Thanks for sharing your knowlegde and experience, my mum passed away in 2022 with this terrible disease. My question is, where did it come from, have you thought about it?? Wish you all the best and full recovery x

I am starting chemo on Monday 8/19/2024…very nervous…I have amyloidosis and was diagnosed end of June 2024! I can’t imagine 33 treatments! You are a rockstar!

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Hi Dan, Steve here, Unfortunately the link to register for tomorrow’s session will not work for me. Could you post again in the messages?

Hi Dan. I have proteinuria for last 5 years, but it’s going down. I asked my PP to check my amyloid level out of curiosity. The I found out that my Kappa Light Chain, free, urine is 67.42. Lambda light chain, free, urine is 12.63 KAPPA/LAMBDA Free ratio is 5.34 which is very normal. I don’t know any Doctor, who has any clue about this test in NW area to ask. What should I do next. Can you comment on this ? Thanks

Hello Mr. Lier. Just finished watching your video - it's as if you were describing my own 2-year journey of going from active, healthy senior to now living as a docile introvert in a self-imposed exile. Fortunately, I was able to convince the VA to test me for Amyloidosis AL. Bone marrow and fatty tissue biopsy results are due this week. I thank you for providing me with a renewed sense of hope and inspiration. Should my results come back positive, I will pursue treatment at the Mayou Clinic in MN. May God bless you and keep you and your family safe. Semper Fi! R/Manny

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I so feel U... ❤

Hugs and lots of energy. I know how it is,was there some time ago.im almost done,wish to find hope. Life is amazing! ❤❤❤

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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?

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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!

🤍🤍🤍

I was diagnosed in 2021 with aa amyloidosis. I'm on dialysis I'm having a hard time finding a doctor. I live in Philly do u have any suggestions?

Did you have ever high albumuin levels in your urine? I guess thats a protien,..

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?

Good to see you, Dan!

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!

That’s great. I’m so happy your numbers are in the normal range or at least going down! Are you on Dara?

Good to see you again! I like that white hair!

Bravissimo Dan, I am so glad you are doing awesome.

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Did you have night sweats> did you have to have a biopsy? and if so where ? What was your heart doing?

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Hi Dan, my husband just got recently diagnosed did you need a bone marrow transplant?

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 TH-cam videos from the first treatment to the last and compared it to my treatments. Thanks Dan!

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

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.

Hey bud. How ya holding up?

Where are you it’s 2024

Any new updates about your health issues?

Thank you for being so forward with your situation.

Another year has passed. Hoping for another update from you!

Are you still in vegas? Just diagnosed w AL alymoidosis. Seeing cardiologists next week and hopefully starting tratment soon. Wish me luck🤙🏽

What have you done lately 12/23/24

I had this but it was caused by Satin drugs for cholesterol drugs. It worked and no more quiverse!

Thank you for this information. I’ve been dealing with similar mystery symptoms for 2.5 years now and Im starting to wonder if it’s amyloidosis

Hope you continue healing and gaining strength day by day!

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.

I hope you hang in there 😢

I Hope you are already under treatment with tafamidis from Pfizer