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General Health Issues Diet and appetite, sleep and fatigue, pain management, exercise, etc.

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  #1  
Old Fri Oct 3, 2014, 10:18 AM
Marlene Marlene is offline
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OT Article

Even though this article is about reversing memory loss in those with Alzheimer, I think everyone who has been using life style changes for BM diseases may find this interesting. There appears to be many suggestions at the end of the article that overlap with what people are doing to improve their health in addition to their treatments.

http://www.sciencedaily.com/releases...0930143446.htm
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Fri Oct 3, 2014, 02:10 PM
Neil Cuadra Neil Cuadra is offline
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Some of that advice, such as reducing stress, getting enough sleep and exercise, and making sure to have good oral hygiene, make sense for all of us, diseases or no diseases.

And perhaps just as importantly is the overall message to pay attention to your health and take action where necessary.
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Old Fri Oct 3, 2014, 11:54 PM
curlygirl curlygirl is offline
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Thank you, Marlene!
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Old Sun Oct 5, 2014, 11:46 PM
tom30 tom30 is offline
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Thanks for posting, I would add choose mostly organic products when they make sense, eliminate alcohol and add Vitamin K2. I do not take CoQ10, I really don't know why. I'm cautious on adding supplements and I like to see a compelling case before starting a new supplement and I guess I haven't stumbled on one yet. Eliminating simple carbs, gluten and processed foods is a challenge, eliminating alcohol was easier than never having a piece of cake or chocolate. My numbers have been stable, hematologist just pushed me to 6 months between visits, still thinks something is going on but I guess after 5 years he's not that concerned. I credit the advise on this forum from Marlene and others for stabilizing and improving my situation.
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Tom- 59 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA.
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Old Mon Oct 6, 2014, 11:22 AM
Marlene Marlene is offline
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Hi Tom,

Thanks for the kind words. I've learned so much here too. This forum and the people who participate are greatly appreciated. Neil and Ruth maintain a very well run and thoughtful forum.

I too agree organic has become more important than ever before. There's compelling evidence regarding residual glyphosate (Round-UP), when wheat crops are sprayed to improve harvest yield, to the uprise in gluten issues over the past decade. Going gluten free is challenging. I think it's worth going gluten free for six weeks and at the same time, work on correcting gut imbalances. The glyphosate is responsible for the disruption of the microbiome of the gut and when crops are treated just prior to harvest, you are ingesting some level of residual glyphosate. I do think, unless you have definitive issue with gluten or you find you feel really good not being on it, you can reintroduce back in just don't eat it daily and go organic.

I will look for an article/study speaking to this and post it later.

Regarding CoQ10, John started this right after he got out of the hospital. With all his issues, of all things, he was very concerned about his blood pressure. It was borderline but it really bothered him. So after doing some research, he started taking it. In two weeks, it normalized. Go figure. Everyone's level of coQ10 drop as we age so it can be helpful. It does help the heart and mitochondria of the cells. You can get it tested if so inclined. CoQ 10 is a pretty pricey.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Mon Oct 6, 2014, 01:21 PM
Marlene Marlene is offline
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Here's the link on glyphosate and gluten intolerances+.

http://www.motherearthnews.com/real-...43E4ADCF9.ashx
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Thu Oct 9, 2014, 09:11 AM
tom30 tom30 is offline
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interesting article on foodmaps, never heard of it before but recently adjusted my diet from what I realized was too high in leafy green, kale spinach etc. I have been trying to find the perfect diet assuming it would be beneficial but it is really complicated. Eating a wide variety of high quality foods in the right proportions takes a lot of effort. Here's the article I believe the nytimes site allows 5 free accesses a month.
http://well.blogs.nytimes.com/2014/1...e=article&_r=0
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Tom- 59 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA.
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  #8  
Old Fri Oct 10, 2014, 10:21 AM
Marlene Marlene is offline
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I know that sorbitol and mannitol will cause me some grief. I remember when they started using them as sweeteners in candy and gum. It's rare that I buy it but if I do I check the ingredients in mints/gum. Last think I want on airplane ride is something with those ingredients in them .

I think the best thing you can do is to work on restoring the gut flora. This can help mitigate issues with many foods.

Thanks for posting the link.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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