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bhansonMember
Britt, You want a motorized scooter. There is a used one for sale at a retirement home here in Walla Walla. You might go on Craigs list or look in the classifieds for a used one. I don’t know how much the one here is, but I can check. My brother has one for himself and his wife and they can go all over. they are great. Good luck, Bonnie
bhansonMemberMarla, In order to test my B-12 I took B-12 for several months and then had my serum level checked. It was low. They gave me B-12 shots and my symptoms got better. Now, when I am checked, my B-12 serum is high, however, I still need the shots at least once a week. They do have a test for the intrinsic value, but I suppose it is expensive. They no longer us the Shilling Test which uses radioactivity. Interestingly, they ou consider Pernicious Anemia an autoimmune disorder. Because my other 2 sisters had PA, they are satisfied. You are so right about having something in your blood, but not being able to use it because of some other factor. It seems interesting that if you search long enough, everthing is related. Best of days to you, Bonnie
bhansonMemberI take zinc regularly for the prvention of colds and flu (I work in a school!) and it works. However, it has to be balanced with copper. I wear a copper bracelet. Also, I am Vit B 12 deficent. Most of my family is. It is inherited. My father and my sister died of chronic heart failure due to pernicious anemia caused by B 12 deficency. It is caused by not being able to assimalate it in the stomach because of lack of intrinsic value. I take a 1 cc shot a week. If I don’t, my hands, feet, and arms go numb. I also swell up. If you need it, you need it. We can’t get it from food, it must come by a shot. For my sister, it was too late. My husband with MDS is on FLOX, a vit b complex with vit B 12. The value of B 12 can be high in your blood, but you are not absorbing it. I think it is a good idea to think about if our health is compromised in any way. Just a thought. Bonnie
bhansonMemberEsme, I am so sorry about Hans. I think of you both often. I know you and he did everything humanly possible, it just went so fast. Pleae accept our greatest condolences. Bonnie and Bernard
bhansonMemberYeah, never give up!!!!
bhansonMemberMy heart is breaking for you and your father. I hope he can get his ice cream. It is so hard to know how hard to fight. I pray there are better days ahead for both of you.
bhansonMemberSusanJ, My husband is 65 and was dxd in December of ’04. He has had health problems for years, also. I did the same thing you did, panic and started looking for some miracle cure. Haven’t found one yet, But…when I found this forum, it is a small miracle at least. My husband had 4 or 5 aranesp shots last winter and spring. That raised his reds to normal, along with the hematocrit and hemoglobin. However, we worried about the whites and platelets. He has since been doing the pineapple and sesame seeds, plus peanut skins tea and his counts are actually higher than when he was dxd. And the important part is that he feels better than a year ago. Each patient is different, but don’t give up, and don’t try to look to far down the road. There is so much more out there for us to try when the time comes.Take every hint from this forum and put it into pratice. Best wishes to your family, Bonnie and Bernard
bhansonMemberEsme, I have empathy for you and for Hans. Has he ever been on an antidepressant? Ativan is a good sleep agent, but it also acts as a tranquilizer and can be a depressant. My husband takes an antidepressant like paxil and so do I. I also use ativan to sleep because of my own med problems. Without paxil to go along with it, I am a basket case. There are a lot of good antidepressants on the market. They work on the chemicals in the brain, so they are not habit forming and they can be used temporarily to get a person past a bad time. Hope Hans sees a much better tomorrow. When I read the treatments that Hans and others on this forum are going through, I can’t help thinking of how brave they are. Best wishes for you and Hans, Bonnie and Bernard
bhansonMemberChris, I just found out from my insurance company, which is getting more and more stingy, that if my doctor contacts them and tells them that the med is an absolute medical necessity, that they will cover it. As if we would take it if it wasn’t medically necessary. So, you might have your doctor intercede for you, Best wishes, Bernard and Bonnie
bhansonMemberFran, I empathize with your feeling about MDS. My husband was diagnosed 15 months ago. It was frightening because it seemed like his counts were all dropping off a cliff. We went to Fred Hutch in Seattle and have a good Hemo doc here, but we couldn’t believe the best thing was to do nothing for awhile. But we have been so glad we did. Instead of going right for the chemo, etc. we waited and his counts leveled off and he feels really quite well most of the time. It was hard to wait and and be patient, but that has proved the wisest thing we have done so far. The things that have helped was to keep reading this forum and drinking pineapple juice, taking sesame seeds, drinking peanut tea and going to a cancer naturopath. We keep very close track of his blood counts so that when he needs the more serious treatments, we will be ready and so much more knowledgable due to this forum. Thanks to you all, and best wishes for your husband. Bernard and Bonnie
bhansonMemberHi SandyB, We get the black sesame seeds on the internet because we live in a small town and even the health food store does not stock them. However, they would probably order them for us. There are many sites on google that you can order the raw seeds from. We grind them in a small coffee grinder and Bernard takes them with water. He eats a pineapple a day and drinks peanut shell tea. He is one that has to juice the pineapple and drink it through a straw because the acid actually causes mouth sores in his case. He is very sensitive, but hasn’t had any chemo yet. We are still do the natural things. Best wishes, Bernard and Bonnie
bhansonMemberHi SandyB, We all eat or juice fresh pineapple. It seems we range from 1/3 to a whole pineapple a day. Bernard juices a whole pineapple and drinks it through a straw because his mouth gets sore. We also take raw black sesame seeds and grind them in a coffee grinder. He takes 2 TBS. with water everyday. Hope it helps. Best wishes, Bonnie
bhansonMemberOkay, Hans, I was just thinking of you, so my positive vibes count(((( double-time)))). Get better, we need you. Best of everything, Bernard and Bonnie
bhansonMemberThanks, the article was more than I had. Hopefully, they will try it for MDS with low platelets. Thanks for all of you. Bernard is on pineapple a day and his platelets are holding around 58 to 63, which keeps him from developing symptoms. Anything less than 58 and he gets symptoms. Best of wishes for you all, B and B
bhansonMemberHi, the article mention that the patients that McGuirk reported on had cancers of the lymph nodes or bone marrow, diseases such as multiple myeloma, acute myelogenous leukemia or Hodgkin’s disease. So, he did mention bone marrow. In order to read the whole report you would have to go to the Dec. 13 meeting in Atlanta and look it up, I guess. It would be great if it worked on MDS. Good luck. Bonnie and Bernard
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