Відео

It's not the specialists ' fault. They're only trained in one thing. PA's have a well rounded background. DOs can think outside the box too.

Is weekly chemo necessary for amyloid sir?

How many cycle chemotherapy did u take sir? Is amyloidosis curable?

Hi Dan. Glad to hear you are improving. Still seeking final diagnosis, neither the heart biopsy pathology nor even the Mayo MS were able to sub-type the amyloid from the 4 tissue samples. I definitely have some amyloid deposition in the heart, and apparently some in bone and I definitely have free light chains passing through the heart. But my heart is thick and functioning quite well, despite mild focal myocytolisis. Staining was positive for ATTR and lambda and Kaffa, despite a negative TTR (grade 0) in a PYP bone scintigraphy. As I understand the technology, it contrasts any TTR in organs compared to in bone. So if I have More TTR in bone than in heart, it gives a negative result? Is that feasible anyone? I suspect my really poor biomarkers (NT-pro BNP= 1290, Troponin T =54) last month also reflect long term high BP, unintended edema, alcohol and glucose stresses. Since changing dietary habits (fasting 11-24 hours each day, no alcohol, minimal carbs and sugars) and fluid intake (bordering on dehydration) I’ve felt a dramatic improvement in health. Resting pulse has fallen from 92 to 73, BP down to @108 /75 despite stopping ARBS. I’ve gone from needing to rest after tying shoe laces to being active most of the day, including a 2 hour walk along soft sand. Dropped 7 kgs to 87 kgs, mostly fluid I suspect. It looks as if the haematologist will commence chemo given my FLC ratio of 0.26 together with Duratumabab,etc - since my liver and kidney are unaffected, I still hold a suspicion that my kidneys are absorbing the light chains before they aggregate, and the amyloid in the heart is a genetic variant TTRv, of which the T60A amino mutation best fits my DNA (British/Irish) and general absence of typical symptoms and the benign way the deposition is affecting heart contractility. I am to have a genetic blood test on heart genes, including TTR, so will find out prior to commencing chemo.

Dan, I have watched many of your videos because I have been on a journey to figure out the source of some recent health issues that I’ve experienced. AL amyloidosis matches many of my symptoms, but I am only 26 years old and I am still trying to figure out if the source of them is something else. Thankfully, the few tests I’ve received in the last few months have shown almost nothing abnormal with my organ functions. Still, I plan on being tested further (specifically for amyloidosis) due to the nature and persistence of my symptoms. Regardless, I want to let you know how much I appreciate the positive attitude that you maintain when documenting your health journey for others to witness. Despite the usually devastating impact a diagnosis such as yours has, you have been a positive influence on others who may struggle with difficult conditions. How we face the challenges in life is our choice. I sincerely hope that you continue to overcome this and possibly help contribute to a better understanding of it for the future so that it can be overcome by others. Thank you for sharing your story.

Hi Dan, I appreciate your openness and transparency. You're brave and that's difficult to do. I recently came across your page and i was also diagnosed with amyloidosis last month, I'm 31. Hope you're feeling good! Your videos give me hope

Do you get nodules under your skin?

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Hi Dan, I'm 55 y/o and was just diagnosed (2-weeks ago) with Kappa Light Chain Amyloidosis. I'm happy to have found your channel. God bless!

My mother having AL amyloidsis.. we are struggling alooot.. treatment requires money .. if anybody ready to help please comment below..rightnow she is in Mytra hospital Kozhikode,( Kerala)..

You should mention that you described AL cardiac amyloidosis, emanating from the bone marrow, which is different to Transthyretin based amyloids, originating in the liver, commonly known as ATTR cardiac amyloidosis, of which there are a few types. After nearly three years of mentioning my lack of energy and breathlessness to doctors, and after an “all clear” following ECG and stress and lung tests, I insisted on seeing a cardio. I do have amyloid deposition in the heart, but even the heart biopsy was indeterminate in subtyping - unless I have AL lambda, AL Kaffa and ATTR although, aside from the sFLC evidence (ratio 0.2) , even scintigraphy and urine tests were negative for ATTR, and bloods normal except for Troponin and NT-BNP. So biopsy is off to Mayo for mass spectronomy. If it’s AL, I should be dead by now, - instead since changing my lifestyle a month ago I’m improving on fitness metrics, so all very strange although I expect to be diagnosed with AL and need chemo and the Durutumabab drug treatment.

Between possible diagnosis yesterday & wake up today, looking forward to maybe feeling better. Hope to have a few or ten more good years. Get treatment a the VA, Cardiologist says I will not need to worry about the expensive meds will be provided free.

My long time cardiologist just told me yesterday he suspects amloydosis, Cardiac kind (I did blood and doing a 24 hour urine). Yesterday seems like a year ago or a bad dream, but today the nurse called to schedule The nuclear test. A video of you years ago popped up in my feed and after watching it, I went to this most recent one and I’m grateful that it was just two months ago!

Thank you for your courage and selflessness Dan. Keep spreading the word!

The rape of my soul is ceaseless and impossible to run from, it goes with me everywhere. I am trapped in hell. Aching and dying for Bryan and the illusions he provided. I could weep and wail forever and ever for how much I ache for him and how much I miss the fantasy we shared.

Hallo, iam from Indonesia, i have lichen amyloidosis , iam 35 year old

"Planet Ayurveda has truly improved my skin! I used their herbal products for Lichen Amyloidosis, and within a few months, I noticed the itching and discoloration subsiding. Best decision I made for my skin health!"

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Ill try my best,av t check time here. Insomnia big time so its huge chance for it. Enjoy life!

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Hi Dan! Don't see link in comments. Safe travels home.

Keep up the amazing work Dan! Thank you for being a wonderful inspiration! Take care and stay safe and healthy!

Hello, see a Natropath. Do a test for mycotoxins(mold) and fungus in your body. Then, work with that Natropath to get a strong prescription antifunal drug to kill them along with a keto diet. No MD can help you. See a Natropath and ask for these tests. Most likely this is the cause because I noticed you have tiny bumps on your arm which is a symptom of amyloidosis.

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Dan, I recently began experiencing symptoms of Amyloidosis as a previously completely healthy 26 year old male. I visited the ER last month after fainting and proceeded to receive some blood & urine tests that only show a couple of slight abnormalities. However, troponin levels outside or normal ranges were discovered and I just recently began experiencing fatigue and chest pain. I have no symptoms of heart or kidney failure at this time, but I have had increasing symptoms of peripheral neuropathy over the last 8 months. I am extremely eager to get tested for this illness. Do you have any advice on how I can receive a thorough assessment as soon as possible?

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thanks for this information...Boswellia Curcumin and Arogyavardhini vati of Planet Ayurveda is very helpful in this condition.

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!