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Old Wed Sep 9, 2009, 04:36 PM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,349
I do feel the shower filter is important especially to your lungs. The chlorine, in vapor form is worse than drinking it. Your skin will also feel better for it. Less drying especially in the winter months.

John did take a multi-vitamin. We constantly modified the various supplements depending on what we were doing. Key nutrients for blood are B12 (the methyl form is best), Folic acid, B6 (p-5-p form is best) plus a general B complex. A good omega 3/flax seed oil and probiotics have been constant through out. Zinc and vitamin D for a strong and balanced immune system.

At one point, we found he was deficient in vitamin c and B5; and zinc was borderline.

Regarding the acupuncture:

John started back up with Traditional Chinese Medicine (TCM) about one year after his treatment. He still had very low platelets (4K) and the nerve pain was still a problem so he did not do the needles. Instead, our acupuncturist utilized various energetic modalities which included moxa, homeopathy, laser light acupuncture, patent herbs and some other bio-energetic medicines. His counts did not improve but his energy did. Also, she would do an annual protocol to address “Wei Chi” to strengthen and protect his outer chi during cold and flu season. This worked very well for him. He did this two years in a row and never caught a cold or flu. And this was when his ANC was around .8 .


I cannot remember how long he did the TCM but at some point he did stop. He did start up again in 2007 but with a Chinese doc who studied under one of the top Chinese doc in China who was doing a clinical trial treating SAA patients with a combo of Eastern (TCM) and Western (ATG/Cyclo) medicine. This doc was very skilled with herbs. This time, John did acupuncture along with herbs which we brewed. He did the herbs for six month but saw no change in his counts so he stopped them. The herbs are adjusted weekly according to your needs and the expectation is that if they are going to work, you will start seeing some movement early on. The Acupuncture really helped his fatigue and overall feeling of wellbeing. He continued with this for about six more months but stopped. It got to be too much to do with working full time. The time-off he needed each week was lot.

Bottom line....there are definitely benefits to TCM, but in John’s case, none that effected blood counts. All you can do is try it and see if it works for you. It’s pretty much like any treatment... It doesn’t work for everyone.

You may want to check out another SAA’ers website. She chose not to do ATG and was able to recover using natural methods. I know she too tried the chinese herbs without success. Here’s a link to her blog: http://www.geocities.com/marlakins/index.html (scroll down to “Alternative treatment used for my AA”

Hope this helps....M
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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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