Hey Dan, Firstly, I'm glad to see you're still in the fight..I was getting worried about you. I will keep it brief because as you know, everyone's story is a long and complicated one. I'm 47 and I work as Martial Arts Coach. Dec '18 I was diagnosed with aggressive Stage 4 renal failure. Dec '19 I was diagnosed with Cardiac Amyloidosis. My heart is only contracting at 40% and my Cardiologist is concerned that I will need a defib in the next few months. I just wanted to thank you for doing what you do as its been helpful up to this point. All the best to you.
Thank for sharing your journey, so glad you hanging in there. Amyloidosis claimed the life of our beautiful Shar Pei, Viggo he was only 2 1/2 yrs old. We were initially told he had renal failure. We put him on a home made kidney friendly diet, but his blood numbers just got worse and worse. We took him to several vets and finally to UC Davis where we were given his diagnosis of Amyloidosis and no options for treatment. Once we had a diagnosis were able to research for ourselves what could be done. We found hope in using "Rife" frequencies to control the production of abnormal protein cells. The machine was pre-programed with Amyloidosis treatments. However, We lost Viggo 3 days before the frequency machine arrived. Viggo's brother Rosmo is at risk, so we are using the machine to keep him as healthy as possible. We are also reaping healthy benefits from this technology. Please consider researching how this technology could help you. All the best and God bless you.
Hi Dan, You are an inspiration, you have so much going on and still manage to keep us updated and maintain your positive attitude. We're still praying for you here from Maryland for health and healing and a miraculous cure for amyloidosis. I'm having a hard time understanding the need for two separate insurance policies. God Bless you and your family Dan!
I am so happy to see you again. My husband is going through Al amyloid heart , Gi track problem. . Now he is on oral chemo (ibrutinub). He is so weak. Looking at you, I get little hope and light at the end of tunnel. Longtime, we do not know what the normal life is. God bless you. Keep your positive thought and smile up.
Hoping you are doing well during this virus going around, can't go out to any hospital at this time, so the University hospital closest to me will be setting up a virtual visit... I still have not gotten them to pinpoint what kind of cancer caused my amyloidosis...I am just in so much pain it's effecting everything!! I was just put on a new pain medication but I absolutely hate how it makes me feel, it controls the pain fairly well but the side effects are terrible!! I have the twitching everywhere now so it keeps me up alot because it tends to be much worse at night...Hoping you & your family are well, my husband is really keeping things together for us as he is an essential business so we are still up & running with car repair...Praying all stay as healthy as possible during this virus, God Bless To You & Your Family!!!
Dear Dan....I unfortunately understand all that you're talking about. Can you get on a heart-transplant list? I have primary amyloidosis all over but it's leveled off - not doing any more damage. But like you, the damage is done. I have started dialysis 3 days a week because my kidneys failed over the holidays and I feel like a million bucks since then. There's a team working on an artificial kidney in the US and I have hopes into that. I'm also looking into Venetoclax to see if it can help. I, like you, have tough discussions with doctors. They just don't get it. Not enough oxygen in the blood - that'll slow you down. Stay strong Dan. Take good care of yourself.
Hi Dan, I have seen most of your videos. Do you believe me as if i say that your are talking my sister condition Two years ago, no one was able to diagnose her heart condition. We went to Thailand and then we returned to my country and appeared proteins called Bence Jones protein in the urine and from here they knew it was a disease called serum myeloma and cardiac amyloidosis and the kappa light ratio is 1600 and we are now in Germany told us she have amyloidosis in stomach and carpool tunnels syndrome they say is no cure for the disease except that she take the chemoreceptor on protocol vd throughout her life, we refused and we changed the direction of the treatment to Mayo Clinic. After two days, we have an appointment there. I wish i can contact with you thank you
Hi Dan. Kathleen here. Hadnt heard anything from you in a while. Glad you are still in the fight. Im doing alright. My numbers are stable. Dr L says I had an "elite resonse" to my treatment. My big issue now is neuropathy. I walk. Try to take things easy. Ive recently added a digestive enzyme in addition to probiotic, to my diet to help manage my G.I. issues. I eat only foods that break down easily. Beef doesnt bother me but have to be careful with chicken. Raw veggies are distressful. Please share if you find any solutions - especially for the abdominal distention. Again, good to hear from you.
Hope you are doing better, I am having severe stomach problems now, I just got my biopsy back & it was positive for amyloidosis... I have my hemotoligst appointment tomorrow, still recovering from the fat pad biopsy, the swelling is still awful in my abdomen & I hemorrhaged from the biopsy inside & have a very large hematoma... The hemorrhage took my hemoglobin from 12.0 to a 10.2!! Do you experience anemia at all?? Lack of B12 can cause stomach problems, my b12 is alright sitting at a 394 which is good for me being I was diagnosed with pernicious anemia in 2008, injections are sometimes needed if your stomach isn't able to pull the b12 from food or supplements!! My Iron is terrible now so I start iv iron infusion tomorrow as well. Amyloidosis can affect the stomach much like ibs!! Please anything you can share that has worked for you, would be greatly appreciated!! My heart is affected as well low voltage, I have an echo Monday, I still don't know what is happening for treatment though because there may be waldenstrom macroglobulinemia as well...Oh and I have abnormal muscle tone, I have never been an athlete but look like I hit the heavy weights!!
Hi Dan I know your body's going through hell right now. My thoughts and prayers are with you. You have a great attitude to whatever life throws at you Keep up the good fight.
Hello Dan, have you tried using oxygen assistance (mask and green tank) while you exercise in the treadmill? That should help compensate the low heart rate. Regards, Ronnie
Hi Dan, did mayo ever evaluate your for autonomic dysfunction? Amyloidosis is one proven cause of this (there are many). However, dysautonomia can cause blood pressure issues, heart rate issues and some issues your described. This malfunction of the autonomic nervous system can be EXTREMELY debilitating. Interestingly enough Mayo clinic AZ has some of the best neurologists in the world who specialize in and can evaluate you for this issue if you feel it meets some of your symptoms.
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?
