Hi Karl,
Yes, I've been reading your posts and thank you for your guidance and comments. I spoke to the Mayo Clinic yesterday and they gave me their NPI # and the Lacrosse phone number, so that was helpful. My doctor recorded kidney problems (Stage III) in my chart which I eventually noticed, but we never discussed it. I try to drink water daily but I know it's not enough. I awoke so tired today again. I try not to eat many grains. I'll order the labs as you suggest and will let you know what the findings are. Remember Karl, "wild caught" meats and fish to avoid the amyloid proteins. Try that for a little while or buy the book "Wildetarian". I'll turn you into a hunter yet! Anyway, I'll see my chiropractor this afternoon who is also a naturopath, so he might suggest a remedy after reviewing my medical history. I am taking one gram Taurine daily per my functional doctor for adrenal fatigue. That has already been diagnosed. Do you know of temporary housing for people like me, who cannot work and are in a hotel? It's getting slightly more than I can afford. I'm trying Air BNB now in Milwaukee but you seem to be knowledgeable of a lot of things. I believe I might be able to get back to work this summer if I can get the right help. But for now, the hotel, even though it has a kitchen, is starting to be an expense that is no longer affordable. I'm just asking -- not meaning to put you on the spot and I'm no victim, trust me. Don't believe in victimhood whatsoever. Also, don't think I am looking for funds or anything like that, just wondering if there are living situations that might be more affordable. Maybe I should move up to Lacrosse? Now that's a thought. Buy I'll definitely take your suggestions seriously and begin the process as you suggest. Amy

Hi, Amy. Good to hear from you, and that you are in contact with Mayo. My oldest sister has been living in an independent living arrangement in Sacramento CA, and is just now moving to assisted living, same facility. She saved a lot of money living independent as long as she could. Actually the only difference is someone fixing her meals and someone doing her meds and laundry. That independent living was still expensive, but cheaper. Not really a kitchen, just a small refrigerator and a micro and sink. You might find one of those in the area around LaCrosse, in a smaller town. Check with Senior Services or medicare. Also, call the local Hospice for suggestions. As for the wildcaught, I cannot imagine what that would have to do with mis-folded and broken protein chains, but that is your choice. Have a good one.

Sorry, I thought you were speaking about amyloidosis in which these proteins accumulate in organs such as heart, kidneys, the nervous system or intestinal tract. I'll take a look into senior services, as I had entertained the idea previously but not fully until you brought it up. I'll be 65 in October and if I have to wait until then, that's not an issue. Anyway, I so appreciate your guidance as I will seek the tests you have mentioned and we will definitely look into those issues. Thank you,
Amy

Amy, I am speaking about many things. At one time I operated the Senior Services in our county. We were involved in anything that could help seniors, from age 50 on up, (or down,) if someone was hurting and we could do something about it. For most states, that is the only real limit.
karl

Anyone can love one or two persons. Most can love several. Some can love hundreds. The world needs more who can love five or six billion at a time.

old karl

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Amy, just to be sure you understand clearly, I have been studying amyloidosis for about 18 months now. At about Christmas time of 2015 I was given a tentative dX of primary systemic hereditary light chain amyloidosis. I bought a very expensive book, "Amyloidosis -- Diagnosis and Treatment", edited by Morie Gertz M.D., Director of Internal Medicine at Mayo MI. It is written by a group of experts from Mayo and other great medical institutions. Since then I have also read many other papers and books. One of the best is "Heart Like Cement", by John Helwig. It is his story of diagnosis and treatment. Donella, my wife, says that if the book had my name on it, it would still be true as my life story. It is free, usually from http://www.amyloidosis.org. Anyway, yes, I am talking about the disease, housing, senior services, faith, almost anything I know something about.

Good for you, John. So glad you found true experts at Mayo, and have been learning about your disease. I'll definitely look into this, the test you recommended (I see my functional doctor on June 5th) and we'll pursue this as a possible event of concern. God bless!
Amy