Thread: Nutritionist?
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Old Sun Oct 2, 2016, 01:27 PM
Bananamoore Bananamoore is offline
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Join Date: Jun 2016
Location: Chicago
Posts: 15
Hello!! Thank you so much for the immediate responses, I'm sorry to delay writing myself, I was waiting for an email notice but I just need to check back in to the same post
Ma has MDS 5q-, which mainly affects her red counts, although her white dip up and down. Her latest counts from last week were: white 2.6, hemo 6.1 (we were in emergency last night actually for transfusion, decided not to wait for her scheduled appt in infusion center; *see story on bottom of post about that experience), platelets normal, ferritin 850. I think she's had about 17 units of blood since diagnosis, but they are becoming more and more frequent, one every 3-4 weeks now. The lowest her hemoglobin has been was 4.8 (she was depressed and refused to go in to get her counts checked). My father passed away last year suddenly from cancer, within the span of 8 months, during which I was also pregnant and had a baby. So she is up and down a lot, but she lives to be with her granddaughter.

She's had three bone marrow taps, blast percentage have actually gone from 5 to 3 to 5 %, but the doctor is saying that it's within the margin of error for the test, so hard to say if they've grown, but right now it's looking like it's holding on to the low end.
In terms of genetic testing I know she has the p53 mutation, but her doctor said it's at around 20%, which he said is on the low end. This is why we are in a gray area when it comes to Revlimid, because patients with this mutation tend not to respond to it as well, but then again she is in the lower spectrum of having that mutation.
I'm getting really concerned because her general trend is going down for her red counts.
We've tried/are trying a number of holistic approaches, including:
-wheatgrass chelation (with some amount of success, there's a study done not too long ago with MDS patients that showed it can be just as effective as a prescription chelator; we've noticed it's more effective when taken on an empty stomach)
-Vit C
-Folate (did not check but think she could have the mthfr mutation)
-Vit K2 200 mircomilligrams (we did the large does 45 mg for three months with Vit D, did not seem to help much)
-Vit D
-Shark liver oil (taking for bringing up the white counts, it has gone up by a point, her lowest was 1.5 and at 2.6 now, but hard to know if that's the reason why, she started a new diet as well)
-DE (Diatomaceous Earth) for parasite cleanse, was very effective, but her counts went low at that time
-Dr. Schulze super food
-juiced ginger, about 1/3 cup of raw juice a day
-cayenne pepper extract
-Chinese herbs (I was in China town in Chicago so many times, it hard to know what you're getting and every 'doctor' seems to have his own collection of herbs he believes in; I've read studies that have shown when done systematically, TCM was really effective at bringing up Hg, but the docs in Chicagoland Chinatown were not interested in looking at that research, I think I stepped on their toes a bit. I also tracked down the realgar/indigo (look up quinghuang powder and MDS trials) combination that was shown to also be effective for MDS patients, but I feel so hesitant putting this together at home, plus I can't find any data to see if it's specifically effective against 5q-; but then I think, is it better to try this before we try the revlimid?)

Recently, she has started to eat 'according to her blood type', and started to incorporate raw meat into her diet. She actually really enjoys eating goat and lamb, and has a liver shake every other day or so. We have kefir at home that we now use raw milk for, and are thinking of doing coffee enemas to help with detox (I'm torn between for/against this: can anyone weigh in with experience?). She takes epsom and sea salt baths at least three times a week to help with detox as well). Thinking of trying a fecal transplant using the baby's poop (sorry for the details, but this is a real thing, and if it can help, the info needs to get out there!), gut health is super important.

So, right now we are at a crossroads, I don't want to keep doing transfusions indefinitely, I am worried about the iron overload, but we are hesitant to take a different step in any direction in case it's the wrong one, but I know we have to make that decision and take the plunge. She has been evaluated for a transplant, she's deemed too healthy at the moment to take that risk (but where is that line???), but luckily she does have a few international matches that God willing will be there if and when we need them. Has anyone had successful transplants in Chicago? Right now we are with U of Chicago, and I don't feel too comfortable with that team, but maybe that's the nature of this beast. Marlene had some really good suggestions about who to seek out in terms of my nutrition question and what kinds of other tests/supplements to try in her PM, I'll get on top of those, we really appreciate the help and advice.

I hope that our story can help someone too!

Kind regards, Anna

(*Speaking of transfusions, I know how nitric oxide decreases the longer the blood has been stored, along with the other break down issues, so after speaking with her onc doctor we agreed we would try to always ask for fresh blood, which has been *very* difficult. Yesterday, after being admitted into emergency with 6.0 hemoglobin, she was given a bag of blood that expires in three days. We refused, and the emergency room team was incredibly gracious and ordered another bag, which would come in 8 hours, and immediately returned the first one; she was admitted to the hospital under observation to wait, and I left to go home to feed my baby. In the middle of the road I get a call from my mom crying on the phone, saying she has to leave the hospital immediately. It seems the attending doctor on that floor came into her room, and the first thing she said was that my mom had no idea what she was talking about, blood can't be old or new, it's the same thing, and because she refused the first bag she would have to cover the entire hospital stay out of pocket, the insurance wouldn't pay for it. I turned around immediately to sort it out, my mother was half dressed and packed when I got there, sobbing, with a 6 hemoglobin, and the doctor was just sitting there. It all worked out, the doctor was just 'trying to be transparent' about costs, had no answer whatsoever when I asked how requesting a different bag of blood would affect coverage and how she could possibly even know what kind of insurance my mother had (and she didn't know), but whatever, it's not the first and last time this will happen; I don't know how to address this issue, everyone hates dealing with us, we are known as very difficult patients in the infusion center, and her doctor is afraid to advocate for her; any Chicagolanders, have you had any luck with centers???)
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