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Old Tue Jan 7, 2020, 02:06 PM
Marlene Marlene is offline
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,360
Hi Jane,

A couple things to keep in mind:
1 - Upward trends are good. For John, and many, recovery is first seen in the white count followed by red cells then platelets. But everyones' recovery will follow their own path. The body decides how and when and what to do first. And even on upward trends, dips do occur. John's recovery was painfully slow. Even those who get AGT may not see a response for six months. You have three things to recover from...pregancy, c-section and AA.

2 - Red cells: An indicator of new red cell being made is the ARETIC # and retic% adjusted for the anemia. Once we started seeing an increase in the ARETIC #, it took months to start seeing it show up in his HGB.

3 - B12 and Iron, at a minimum, should have already been checked when you were first having symptoms. But if you were on B12 when they checked, the serum levels were most likely falsely elevated. Nutrients need to held at least 4 or 5 days prior to testing.

4 - Ask your Natruropath if there is a urine test to check nutritional status. If not, then make sure what she chooses doesn't require a lot of blood. Spectracell does micronutrient testing but it uses blood serum. They pull out the white cells to assess things. Blood is precious and you're holding at an OK level right now and I would hate to see that stressed at this point. There are things she can assess without checking your blood. John did an Organic Acids test which uncovered some nutrient deficiencies but this was long after treatment and he had already been doing a lot of things to heal.

5 - Like Hopeful said, Fred Hutchinson Cancer center might be worth exploring for a second opinion.

6 - Sleep is so critical to healing. Is there any way for you get some help so you can get some sleep?
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 90K.
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