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Bananamoore Sat Sep 24, 2016 09:36 PM

Hi all,

I have been following the posts here for a while, and would like to first off say thank you to everyone for sharing their experiences, it has been invaluable in providing help and information. My mother was diagnosed with MDS three years ago, we have not tried any conventional medicine other than transfusions and since then her hemoglobin has dropped to about 6.5. I am not completely opposed to using medication at this point, but my mother would also like to try using nutrition to help herself. Due to her already very healthy diet and lifestyle, she has remained remarkably healthy (knock on wood) in spite of the drop in hemoglobin. We have already been to see a few nutritionists, but hours and hundreds of dollars later we walked away with little information we didn't know before. What I'm looking for is an actual professional who can look at her history of blood test results and tailor a specific nutritional/supplemental program, not just print out a chart of foods to eat for blood type B ( I too have access to the Internet, thank you). While I know that there is no combination that is going to be a quick magic bullet, I was genuinely hoping to find someone who could at least guide us in the right direction of health building foods and supplements that won't interfere with each other, her disease, and her specific body metabolism. I've gone as far as I can on my own, and at this point I think I need some help. Would any of you be able to recommend such a person? I live in the Chicagoland area, but for somebody worthwhile would be willing to travel or pay for a teleconference. Thank you!!!
Kind regards,

bailie Sat Sep 24, 2016 09:50 PM

Welcome to the forum. What is your mother's specific diagnosis for MDS? Genetic mutations? Blast count? It is great that your mother has done fairly well without medicine.

Marlene Sun Sep 25, 2016 10:29 AM

Over the years, we've not found anyone who can address the disease directly. These blood disorders are very rare and the root cause will vary from person to person. There is only so much they can do. We have done a lot with diet and complementary medicine and like you said, there's not a magic bullet. We worked with a nutritionist early on to try and figure out what was low or deficient. That can be helpful to find out so you can correct things. But these days, you can pretty much find a lot out on your own. There are labs that provide blood, urine and stool test directly. You can find out if you have MTHR mutations too which can effect your body's ability to convert and use the B12 and folate.

I would consider looking for a doctor who specializes in functional or orthomolecular medicine instead of a nutritionist. But you need to be careful there too. Like in all medical professions, many will over test/treat and that can be bad too.

Is it only her red cells?

Marlene Sun Sep 25, 2016 10:43 AM

Sent you a private messages so check your inbox.

Bananamoore Sun Oct 2, 2016 02:27 PM

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???)

Bananamoore Sun Oct 2, 2016 02:54 PM

Ok, I've subscribed to the thread (d'oh!) and added a signature, that should help! :p

Bananamoore Sun Oct 2, 2016 02:59 PM

Any benefit in taking supplements to raise nitric oxide before and after transfusions
I've just remembered that this is a question I had, has anyone tried taking supplements to increase their nitric oxide to help the efficacy of the transfusion? Is this even possible or does the nitric oxide have to be in the bag of blood for it to work? My mom just started taking L-arginine, L-citrulline, and pycnogenol, going to do some research to see if there's anything out there with really good reviews.

bailie Sun Oct 2, 2016 03:38 PM

Have the doctors suggested a transplant? I would think you have had some pretty good conversations if they have already found donors. Nutrition will help the situation as it does for anyone but nutrition will not turn this around. Don't make the mistake of waiting until your mother's health deteriorates before going to transplant. As we get older we seem to accumulate more co-morbidities, don't wait until then. I had my transplant while feeling great and that is one reason that makes a transplant successful. Remember also, that the younger a person goes to transplant generally the better the results. Also it is important to be on "the same page" as your health providers. Unless there is something really out of balance, they are there to help you. Be as cooperative as possible while being an advocate for your situation. Additionally, I had my transplant before having any transfusions. I do agree that the decisions are difficult and personal.

Marlene Sun Oct 2, 2016 04:17 PM


A member on this forum was going to try a fecal transplant. Here's the thread on it. You may want to PM/email her to see how it went.

Bananamoore Sun Oct 2, 2016 04:24 PM

Yes, you're right, we have had conversations about transplant, right now her doctor deemed her as too healthy for a transplant; he explained that there is a window where she should be transplanted where the benefits outweigh risks, and right now the risks outweigh the benefits, since her blasts are low and she is relatively healthy. This is why we are stuck, it seems that doctors have differing opinions as to when to transplant. It makes "being on the same page" with your doctor difficult, since as you pointed out healthier people tend to take the transplant much better. Congratulations on your success! Doing it before receiving transfusions must have helped, although I'm sure it was a difficult choice. Did your doctors advise you to pursue the transplant early on with the belief that it was the best option? I'd like to meet with someone who has transplanted 5q- patients successfully, the team we are with right now have not had much experience.

bailie Sun Oct 2, 2016 04:51 PM

The thought process was that if I wanted a chance to live a transplant was a necessity. For me it was a simple choice but not a pleasant choice. I was golfing every week and feeling great so to say "let's do it" was difficult. I was given the opinion by my doctor that it would have been ok to wait another three months, but why wait? I had a very good friend diagnosed two months before me and he waited too long and didn't have a chance once he had to go to transplant. These diseases almost never get better with time and can go downhill quickly.

Marlene Mon Oct 3, 2016 11:55 AM

Blood transfusions
So sorry to hear how they treated your mom. We found it's best to avoid the ER at all costs. But if you can't, it can help to have a letter/transfusion orders from her doctor that specifically state the transfusion requirements. Also the actual studies, if you can find them, about the age of blood products. Age does matter and it makes sense that those getting red cell for blood disorders should have red cells that will last the longest versus someone who has a one-time event requiring blood. I would not hesitate to report the incident to the administrator of the hospital.

Not certain of your mom's routine ( how often she gets a CBC) but it may be a good idea if you haven't already, set up some transfusion thresholds so you can avoid the ER. John, along with his doctor, decided when he would need transfusion and set thresholds. His threshold for red cells was when his HGB dropped to 8 - 8.3 range and his platelets at 8K. All his products were to be cmv negative & irradiated. His platelets were to be single donor. For your mom, dropping to 6.5 sounds like it's too low for her so maybe a HGB threshold of 7 or 7.5 would be doable. This way you have time to set up the appointment with transfusion center. I know you are worried about iron overload but at this point, it's not a big issue and you can discuss using an iron chelator at some later point to keep it in check. You may want to ask the doc to request red cells no older than X on the orders.

Lastly, I am a big believer in 2nd and 3rd opinions. Experience with the disease and treatment is a must. All doctors and BMT centers have their biases towards their protocols. Nothing wrong with that but you don't always hear about all the treatment options available. They tend to stick what they know/do. It helps when you have confidence in your healthcare team and choices.

Bananamoore Mon Oct 3, 2016 04:16 PM

Marlene, yes, I think we need to talk to her doctor again with research in hand. I've done a few google searches with lots of info, but is there a 'definitive' study that goes down well with doctors?
I don't know if they ever tested her donated blood for cmv negative. Is this something that we should find out about? Her blood is leukoreduced and irradiated as well.
At this point she is getting transfusions every 3-4 weeks if one unit, 4-5 weeks if two units; I think that 6.5 is too low of a threshold, but she's worried she's getting them too frequently, although I'm more worried about her heart when it goes so low.

Marlene Mon Oct 3, 2016 04:29 PM

If they order leukoreduced she's probably CMV neg but it's worth checking. Sounds like they probably did check. There were times they couldn't get CMV negative for John and the leukocyte reduced was supposed to be equivalent to CMV neg.

Vitamin e, as well as a vitamin C can help with the oxidative stress from the excess iron. Since she's adding pycnogenol that will help too.

Hopeful Mon Oct 3, 2016 10:33 PM

They should check if your mom is CMV negative before ordering blood products. If she is CMV negative, you would want to be sure to specify that she gets CMV negative blood. This is in addition to it being irradiated and leukocyte depleted. If your mom gets CMV positive blood, even once, then she will become CMV positive. Once you are CMV positive, you are always CMV positive. Unfortunately, this means more complications if your mom ever gets a transplant. Don't worry about being a squeaky wheel when it comes to checking blood products. My infusion center probably was annoyed by me as well :)

Here is an interesting article to discuss with her doctor about combination therapy to address del 5q with p53:!po=43.6000

I agree with Marlene that it would be good to get another opinion on your mom's treatment plan.

Good luck and keep advocating for your mom!

Bananamoore Wed Oct 26, 2016 05:16 PM

Thanks for the tip on CMV, didn't know about that, hopefully she hasn't contracted it yet. And great research article, I shared it with her doctor, he didn't sound like he thought much of it either way, said it's in the early stages of testing, but it's good to know that there is progress and some options if need be. Thank you!

Lulu Tue Jan 31, 2017 06:34 AM

Hi Bananamoore, I know what you mean about spending $$$s on alternative therapists and not being able to find anyone who knows about MDS. Sounds like you are doing everything that you can, and I hope your mother is OK.

I would second Marlene's advice to look for a functional medicine / orthomolecular doctor. Obviously some are better than others, and many won't have heard of MDS. They do look at the patterns/history of disease rather than the label though, so lack of specific knowledge of MDS may not always be a problem.

I understand what Baillie is saying about transplants, and it is a huge decision. Last year when my Hg dropped suddenly I was getting a lot of pressure to consider it. I refused as I have no sibling match, no caregiver, fibrotic marrow, and multiple antibodies (I suspect as I'm rejecting donor blood I'd also reject donor marrow). After my Hg stablised one doctor looked at my notes and said "Oh it's a good job we didn't do that transplant" :eek:

Cheryl C Tue Jan 31, 2017 07:11 AM

I did a lot of investigating of natural therapies when I was first diagnosed with RAEB2 and was needing a transplant. The most hopeful was a hospital in Germany where complementary medicine is used, along with conventional medicine, to treat patients before and after transplants. Unfortunately I've lost the email I sent and received from one particular hospital, but here's a link to a group of treatment centres - Very expensive, as you can imagine!

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