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Old Wed Dec 15, 2010, 01:33 PM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,406
Hi Tom,

Be sure to get a copy of your test results, especially the B12. Many docs feel that any reading under 500 is okay but there's more up to date information and studies supporting higher levels of 500 or greater.

Based upon our experience with SAA and recovery, we found it served us better to focus on improving John's overall health instead of trying to fix his bone marrow. Nothing happens in isolation in your body and a holistic approach is helpful. And, since most of us cannot figure out the root cause of the disease, it usually means more than one thing is out of balance. How you get to optimal health is the challenge and there are many pathways to it....you just have find the one for you and it usually means taking a broader approach. As you fix/balance one aspect, many other aspects of your health can improve or should I say heal. Stopping progression and even small incremental improvements may be all one needs for long healthy life.

On the caution flag regarding curcumin, most docs will not advocate or support the use of herbs, vitamins, special diets mostly because they do not have the knowledge or experience. Here's a discussion on it:
http://forums.marrowforums.org/showthread.php?t=1795

We try our best to eliminate as many man made chemicals from our environment as possible. From cleaning products, soaps, shampoo, creams, lotions,petro chemicals, plastics, genetically modified foods, hormone/antibiotic meat, etc. The reason being is that toxic chemicals are damaging to the bone marrow. Especially if that is your achilles heel. I have not put down any chemicals on our lawn since John got SAA.
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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 July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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