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Old Wed Sep 2, 2009, 04:50 PM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,349
This will be a challenge....

I should have kept a better record of everything but I didn't and will have to rely on my memory.

First, John's treatment was very different from your brother's but the premise to heal still holds. Everything we did was to help his body heal. The treatment took an unexpected and difficult toll on him so he had many things in need of healing besides his bone marrow. John's recovery was very slow. His doc at Hopkins was fully supportive of any alternative treatment we wanted to do and the treatment protocol he did for the SAA was done over a 4 day period so nothing we did conflicted with it. After that, it was all about supportive treatments, recovery and getting the body to respond. I also found that you need to focus on the entire person and not just an organ or disease because nothing is isolated. SAA is a symptom of something else gone wrong and it can vary from person to person. In John's case, there's not one vitamin, herb, medicine, etc that was gonna be his miracle. The treatment stopped the disease but there was nothing they could offer except time to help his bone marrow recover. For others, the treatment was their miracle. They responded and recovered their counts according to schedule and did not drastically change their life style. John was clearly outside the "bell curve".

We did a lot with diet, nutrition and supplements. Even though we ate healthy organic food before the SAA, we found we needed to modify our diet even more to ensure all foods were nutrient rich and added in a lot more protein and healthy fats. Treatment pretty much depleted any nutrient reserves John had and he had more of a need for anti-oxidants and the B vitamins. He was pretty toxic from all the drugs and nausea remained a problem for quite awhile making it a bit of a challenge. We juiced, did whey protein shakes, made bone broths for the minerals and probably more than I can remember.

So our first step to recovery was FOOD and supplements. (along with blood transfusion and neupogen for white cell growth) We also did what we could to eliminate exposure to toxins. I no longer put down any fertilizers or use insecticide unless it's an extreme case but never in the house. All our personal care product are natural, meaning no petro chemicals, sls, phalates, floride etc. I have a filter on our shower and use filtered water.

We started this once we got home from Hopkins....he was there for four and half months. So that's the foundation for healing and then we incorporated other modalities to address specific issues as it related to overall healing and quality of life.

I'll stop here for now and do a second post regarding specific alternative treatments. In the meantime, please feel free to ask any questions.

Marlene
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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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