Holistic treatment of MDS [Archive]

Zoe's Life

Sun Sep 2, 2007, 08:44 PM

Dr. Raza did some studies on COQ10 and curcumin. I did them for a while but my hgb started diving. I don't know if it was a coincidence or caused by the curcumin. Although Revlimid also causes counts to drop initially. Maybe I will try the curcumin route again when the Aranesp stops working before trying Revlimid. I found protocols for it somewhere. I will try to track them down again.

Zoe

Marlene

Mon Sep 3, 2007, 10:36 AM

Bruce at Aplastic Central has been doing a combo of things for MDS. You can read his blog and journal. I think he's been having some success with chinese herbs. His site is http://www.aplasticcentral.com/

Marlene

Neil Cuadra

Mon Sep 3, 2007, 05:14 PM

Bruce at Aplastic Central has been doing a combo of things for MDS.I think it's for AA, not MDS, in Bruce's case.

Marlene

Tue Sep 4, 2007, 09:58 AM

No, Bruce has progressed to MDS....M

Tom M

Mon Sep 10, 2007, 12:21 PM

When I first started Revlimid in April, at 10 mg, my counts dropped so much I had to be hospitalized. In June, I started back up on the Revlimid at a lower dosage; 5mg. Prior to that, in May, I started taking shark liver oil capsules, as a supplement. Someone else on this site was taking it, and they were getting fewer transfusions. I have been transfusion free since May 16th of this year. Whether it is the shark liver oil, the lower dose revlimid, or the prayers of many being answered, I do not know, but I am still taking the SLO and my hgb is still climbing. My last blood draw had me at 9.9 hgb, wbc - 2.9, platelets at 125, and neutrophils at 700. For me, these counts are great, and I feel pretty good.

koyotekathy

Tue Sep 11, 2007, 12:38 PM

lfeinsmith

Wed Oct 3, 2007, 12:18 PM

Does anyone have any experience with the holistic treatment of MDS? Is there a special diet or paticular supliment(s) that help with MDS. Any holistic Drs that treat MDS succesfully? Right now all you hear are drugs for the treatment of MDS.

Dr Raza recommends daily juicing with green vegetables (organic) because it contains many micronutrients

Vivvi

Sat Nov 3, 2007, 09:55 PM

Dr Raza recommends daily juicing with green vegetables (organic) because it contains many micronutrients

Who is Dr. Raza? My mother has mds.

Zoe's Life

Sat Nov 3, 2007, 11:36 PM

Vivvi,

Welcome.

What type of MDS does your mother have?

Here is what I found on Dr. Raza for reading. I learned about her from the U of Mass web site.

http://www.doctorndtv.com/profile/profile.asp?alias=araza

http://www.umassmed.edu/hema_oncology/pstatement.aspx

This is old, but gives you some info. Since this was written, her husband has died of cancer and I have read that she is currently at St. Vincents in NY. I am particularly interested in her studies of ginerol and curcumin for MDS.

Zoe

JAC

Tue Apr 15, 2008, 01:57 PM

I was on 10mg Rev. for about a month and lost my gallbladder. Taken off Rev. and back on 5mg Jan. No tx for 9 months, counts dropped, back on tx every 3wks. Has anyone heard of doc. in Germany using Rev. 3 mo. on, 1 off with success?

SASSI07855

Fri Mar 6, 2015, 06:01 PM

This is the only thread I have come across here that has anything to say about the Holistic approach to treating MDS problems. I am surprised to see that there have not been any posts on this subject here for a number of years, or at least I have not found them.

I am a believer in the Holistic approach. I plan to begin a regular posting here on this thread. if you have had experience with the Holistic approach it would be good to hear about your experiences.

Carole L

Mon Mar 9, 2015, 12:32 PM

Hi, Love to hear more about his subject. I tried to find a centre that would treat my MDS holistically and was rejected. Reason was MDS is hard to treat and both places I contacted (including a 1 hr consult with a physician), had no success. They did not want to take my $.

I take shark liver oil, B12, Evening Primrose, Vit E, 3000 mg of VitC, Ashwagandha & Cal/Mag.

Have currently completed cycle 1 of Vidaza and struggling with very low platelets, WBC & Neutrophils, and of course fatigue. Cycle 2 starts Tues.

Look forward to hearing more.

Carole

Marlene

Mon Mar 9, 2015, 03:24 PM

I thinks there's quite a bit of information throughout this site on the approaches people have taken to address their disease holistically. Treating holistically does not preclude one from utilizing conventional medical treatments so it may be difficult to find.

You may want to search for some of the following topics:

Vitamin D3 and K2 for MDS
Copper for MDS
Intermittent fasting
MTHFR mutations as it relates to the utilization of B12 and Folate in bone marrow failure.
Gut microbiome
Gluten free diets

You may want to watch this webcast....it's a few years old but still good.
https://www.pathlms.com/aamdsif/courses/851/slide_video_presentations/7764

Cheryl C

Mon Mar 9, 2015, 08:08 PM

Just from my own experience, avoiding foods containing cane sugar greatly reduces vulnerability to sore throats. Cranberry capsules can help to reduce vulnerability to UTIs. Echinacea 5000 mg once or twice a day can stop a threatening throat/chest infection. Medical grade honey is really helpful for mouth ulcers or sore throats.

tom30

Mon Mar 9, 2015, 10:21 PM

-Exercise within your tolerances.
-Practice stress reduction, meditation, yoga, prayer or whatever woks for you.
-Eat healthy - limit or eliminate processed foods, pick a diet that you are comfortable with, some eliminate meats, some eliminate gluten, focus on unprocessed organic fresh foods.
-Eliminate Alcohol.
-Use selective vitamins and supplements, there are lots of recommendations on this site. I do not believe there is one set of vitamins that can be recommended.

Lulu

Tue Mar 24, 2015, 12:01 PM

I have had dramatic success with K2, which I think is being knocked out due to my gut problems. Lately my Hg has gone down a bit and I don't know if this is because I have taken my eye off the ball a bit and have skipped supplements and been slacking with diet, or something else.

Next thing I am planning to try if my Hg carries on going down is low dose naltrexone. Theory being that this will address gut inflammation.

Am a terrible stress-monger, and am trying to work on this aspect too!

Marlene

Thu Mar 26, 2015, 05:13 PM

Lulu,

Have you read Deb's post on her experience with LDN? Her circumstances are different from yours but you may find her posts interesting. I think you are the second person to explore this.

Would love to know how you do on it.

Marlene

Lulu

Mon May 18, 2015, 02:21 PM

Hi Marlene, have only just checked into the site in months! Yes I read Deb's experience with LDN, and know several people who are taking it for other conditions and had a good response. I am hoping that it will address my gut problems which I suspect are a factor in the MDS.

I have just ordered some LDN, so will try to post some updates. Currently my Hg is 10 and WBC 3.8, which is lower than they have been for ages, although I know I am very lucky compared to many others.

Have also been trying to do something about my stress levels, as I can get myself into a complete state worrying about test results.

HopeW

Sun Aug 23, 2015, 08:13 PM

Hi, how was your experience with LDN? Could you please share?

Lulu

Wed Oct 7, 2015, 07:38 AM

Hi, have been on LDN for about 4 months now, so far I don't think it has affected my anemia (at last count it was 10.5) or my gut problems, however I do feel a bit more energetic.

It has had a dramatic effect on some other health issues though, I used to have very bad tendonitis and was getting a lot of cramps in my calves at night. Haven't had a cramp for ages (touch wood) and within a few days of taking LDN I was walking easier.

Marlene

Wed Oct 7, 2015, 09:10 AM

I'm glad it has helped on some level and any improvement in your quality life is a good thing. Sorry that you still have the gut issues though. It would be helpful to get that back on track since it probably has a impact on other things.

Have you been screened for H.Pylori bacteria?

How did you figure out the dosage that worked for you? And did you have any sleep/dream issues.

Lulu

Tue Oct 27, 2015, 05:08 PM

Hi Marlene

I have never been tested for H Pylori, will ask the doc about that, thanks for the suggestion!

Re the LDN, I started taking a very low dose and worked up to 4.5mg. Had a couple of nights of weird dreams, but otherwise slept better on it than off it.

Blood test last week showed counts had gone down though, especially white cell count. So the LDN defo hasn't helped with that, and I have stopped it for time being to see if it makes any difference. Suspect it doesn't make much difference to blood counts, but am erring on the side of caution!

tom30

Sat Nov 26, 2016, 01:52 PM

-Exercise within your tolerances.
-Practice stress reduction, meditation, yoga, prayer or whatever works for you.
-Eat healthy - limit or eliminate processed foods, pick a diet that you are comfortable with, some eliminate meats, some eliminate gluten, focus on unprocessed organic fresh foods.
-Eliminate Alcohol.
-Use selective vitamins and supplements, there are lots of recommendations on this site. I do not believe there is one set of vitamins that can be recommended.

An update on what has been working for me FWIW. Most of what I do is picked from what others have found helpful on this forum.

I settled on a mostly paelo diet (no processed foods) and use a nutribullet to make 2x 24oz green smoothies a day. I use mixed greens, tomato's, cellery, carrots, cucumber, baby peppers and a small amount of mixed berries, tumeric root, ginger root, garlic clove.

vitamins and supplements- b12, multi, b6, magnesium, zinc, d3, mk7,fish oil, ginko.

run 4 miles a day outside.

stress reduction went out the window with new job and tinnitus so I can't say I've got anything that works for me with that right now. Against my better judgement I started drinking wine this year after not having alcohol since 2009. I have to get back on track with taking that out of the equation.

Was at Hematologist this week and my blood counts are ok and while my condition is not normal he does not know what the cause is, he believes it is autoimmune related based on my past history, when I first went to him he was thinking MDS/BM failure. My counts have been steady over the last 2 years.
My counts from back in 2010 were wbc 2.5, rbc 3.8, plt 75-, mcv 98
Currently ----------------------------wbc 3.2, rbc 4.32, plt 112, mcv 101.

BillPruitt

Mon Jan 2, 2017, 10:28 AM

An update on what has been working for me FWIW. Most of what I do is picked from what others have found helpful on this forum.

I settled on a mostly paelo diet (no processed foods) and use a nutribullet to make 2x 24oz green smoothies a day. I use mixed greens, tomato's, cellery, carrots, cucumber, baby peppers and a small amount of mixed berries, tumeric root, ginger root, garlic clove.

vitamins and supplements- b12, multi, b6, magnesium, zinc, d3, mk7,fish oil, ginko.

run 4 miles a day outside.

stress reduction went out the window with new job and tinnitus so I can't say I've got anything that works for me with that right now. Against my better judgement I started drinking wine this year after not having alcohol since 2009. I have to get back on track with taking that out of the equation.

Was at Hematologist this week and my blood counts are ok and while my condition is not normal he does not know what the cause is, he believes it is autoimmune related based on my past history, when I first went to him he was thinking MDS/BM failure. My counts have been steady over the last 2 years.
My counts from back in 2010 were wbc 2.5, rbc 3.8, plt 75-, mcv 98
Currently ----------------------------wbc 3.2, rbc 4.32, plt 112, mcv 101.
thank you for posting your list of foods and supplements. Are you getting better with higher blood counts? Good for you for taking charge of your health. My dad has MDS and wish he'd do the same.

bailie

Mon Jan 2, 2017, 01:02 PM

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.

tom30

Fri Jan 6, 2017, 10:51 AM

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.

medicalenigma

Sat Jan 14, 2017, 08:02 PM

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.

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.

tom30

Sat Dec 9, 2017, 09:03 PM

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

tom30

Thu Apr 25, 2019, 09:07 PM

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.

exploring_options

Mon Oct 5, 2020, 11:22 AM

tom30

Tue Oct 20, 2020, 04:53 PM

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.

exploring_options

Mon Oct 26, 2020, 02:22 PM

palumanec

Tue Aug 24, 2021, 01:31 PM

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 (https://springhomeo.com/). I hope they will help my dad, as his state is really terrible.

Matthew42

Tue Aug 24, 2021, 04:50 PM

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.