Bill, welcome to the forum. What is your father's diagnosis? There are many different forms of MDS. As you seem to know staying healthy is very important for success with this disease.

Hi, My doctor originally said based on the bmb that I most likey had MDS he was very blunt on prognosis he said my marrow was a mess. He has since backed off the diagnosis and says I might have an autoimmune issue of unknown origin but there is definitely something going on with my marrow, he has said it is failing. So I do not have a MDS diagnosis right now, my blood counts have gone up since 2010 and you can see that in my last post. My doctor says it is not likely that anything I do with my diet would change anything but as you will see if you look at other posts on this board others have also see some hope in a holistic approach. There is no magic bullet that I have come across but I suggest that you read through all of the posts and come to your own conclusion on if it is worth pursuing. take care...

off topic note to my response, went to dentist recently and he was amazed at the health of my gums, I hope it's not a fluke, the only change I made was the Turmeric root in my shakes. I use about a 1 inch piece, I had tried cooking with the spice in the past and didn't like it and did see any positive results. A few months ago someone mention that it was a root they sell in local store and started incorporating it in my shakes. A google search of Turmeric and Gum health pulls up several studies with positive results.

Thanks for sharing
 

Im in the same boat as you. MDS but not conclusive and most likely immune. Coombs tests are negative but for sure inflammation of unknown origin is a problem. Having to take steroids to combat that. Hoping CBDs might help that. Magnesium helped to a point too. Was on 40mg of prenizone and now down to 15. Magnesium eliminated my hives that have plagued me since the beginning 5 years ago. But below 15 my muscles really start to ache and stiffen.

FWIW... I'm still on a mostly Paleo diet, I increased my veggie shakes to 2 * 30 oz, its a combo of cucumber, carrot, mixed greens, tomato, red and yellow mini peppers, celery, a one inch piece of turmeric, same size of ginger, a glove of garlic. I trained for a ran the nyc marathon in November, legs are still recovering. But had blood work done before and after, before was for a regular hemo checkup by chance then after because i have trouble recovering from the marathon. But the blood work up was really good. in oct WBC3.5, RBC, Plt 127, in Dec- WBC 4.0, RBC 16, Plt 143. MVC still around 100.

I credit the information on these boards as turning things around for me, I appreciate the guidance...

When I joined in 2010...this was my first post.

I've seeing a hematologist for 2 years, my counts aren't that low, wbc 2.5-3, rbc 3.8-4, plt 75-90, mvc 98-99. They bounce around that range. Doc did 2 BM Biopsy's and there are no blasts. He thinks its MDS, my question is... has anyone seen this type of progression for MDS? Thank you

FWIW... I was at the hematologist last week, my numbers are in the normal range. Here is what he said... He suspects ..Mild autoimmune cytopenias, normalizing.
Only other explanation for cytopenias would be slowly evolving MDS but this is not presently apparent. Macrocytosis improved, MCV 98 today.

I'm still following my program of a mostly Paleo diet, exercise and generally trying to be healthy. I have switched from running to rowing for the most part on a Concept 2 rower, I'm currently rowing 10K a day.

Macrocytosis improvement
 

Hi Tom,
This is great news on your macrocytosis improvement. Congrats. How are you nowadays? Do you keep up with the supplements and smoothies?

update
 

FWIW, My results are stable, my last hematologist visit was in July, I'm still continuing with what I have documented here which is basically what I have learned from this site. I'm very fortunate to have found this site and all of the recommendations over the last 10 years.

I hope that bone marrow research continues to improve, as I said I'm fortunate to be able to keep whatever is causing my blood count results to be a off under control.

Happy for you! Keep it up!
 

Thanks for reverting. Happy for you Tom. Keep it up and all best!

How is your dad doing? My dad has similar health issues, and we have tried almost everything. However, his condition only gets worse. We also thought about holistic treatment, but we are very skeptical about it. This kind of treatment wants to treat the body without medicine but reach the same results. My mom thinks we have to try homeopathy as well, and holistic treatment will be the last chance. We have already called for a great specialist at springhomeo.com. I hope they will help my dad, as his state is really terrible.

I know much less about MDS than I do about Aplastic Anemia, but I read somewhere that bone marrow supplements really helped an older man suffering from MDS. His blasts were approaching 20%, which meant Acute Myeloid Leukemia was developing. Well, after being on bone marrow supplements for about two months or so, his blasts come way down. The man's doctor was utterly amazed.

I've read several cases of people healing naturally from aplastic anemia around the world online. But, what works for aplastic anemia may not work for MDS, and vice versa, as they're different diseases. I think Qigong and visualizations would work well for any disease or medical problem.

It's very difficult to find holistic treatment information on rare bone marrow diseases.

MDS is still not technically cancer (pre-cancer), if I understand well. And aplastic anemia and PNH are autoimmune diseases, both of which are still not that well understood.

Wishing everyone health, peace and happiness.