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Alternative Treatments Complementary and alternative medicine; natural and holistic approaches

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  #1  
Old Sun Sep 2, 2007, 07:09 PM
seniorrico seniorrico is offline
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Holistic treatment of MDS

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.
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  #2  
Old Sun Sep 2, 2007, 08:44 PM
Zoe's Life Zoe's Life is offline
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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
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Diagnosed MDS-RA 5q- at age 47 (November 2006). Aranesp 2/07, good response.
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  #3  
Old Mon Sep 3, 2007, 10:36 AM
Marlene Marlene is online now
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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
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. FE is down to 384.
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  #4  
Old Mon Sep 3, 2007, 05:14 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by Marlene View Post
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.
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  #5  
Old Tue Sep 4, 2007, 09:58 AM
Marlene Marlene is online now
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No, Bruce has progressed to MDS....M
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. FE is down to 384.
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  #6  
Old Mon Sep 10, 2007, 12:21 PM
Tom M Tom M is offline
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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.
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Tom, age 56, diagnosed with MDS RAEB Oct of 2006. Previously treated w/ vidaza, unsuccessfully. Revlimid successful 1 year. Progressed to AML 4/08 w/ 20% blasts, now in remission. BMT to take place 10/08.
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  #7  
Old Tue Sep 11, 2007, 12:38 PM
koyotekathy koyotekathy is offline
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What a wonderful blog!

Quote:
Originally Posted by Marlene View Post
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
Thank you, Bruce, for that truly wonderful blog! It was a lot of work and very valuable!
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  #8  
Old Wed Oct 3, 2007, 12:18 PM
leslie s leslie s is offline
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vegetable juicing

Quote:
Originally Posted by seniorrico View Post
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
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  #9  
Old Sat Nov 3, 2007, 09:55 PM
Vivvi Vivvi is offline
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Originally Posted by leslie s View Post
Dr Raza recommends daily juicing with green vegetables (organic) because it contains many micronutrients
Who is Dr. Raza? My mother has mds.
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  #10  
Old Sat Nov 3, 2007, 11:36 PM
Zoe's Life Zoe's Life is offline
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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/pr...sp?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
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Diagnosed MDS-RA 5q- at age 47 (November 2006). Aranesp 2/07, good response.
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  #11  
Old Tue Apr 15, 2008, 01:57 PM
JAC JAC is offline
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Red face Tom M

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?
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Jean 70; diagnosed MDS 1/06:-TX x2wk. On Revlimid 10mg 9/06. 10/06 gallbladder removed, Rev. stopped, started 5mg 1/07- Counts up, no tx until 10/07,stop Rev.
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  #12  
Old Fri Mar 6, 2015, 06:01 PM
SASSI07855 SASSI07855 is offline
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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.
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  #13  
Old Mon Mar 9, 2015, 12:32 PM
Carole L Carole L is offline
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Holistic Therapies

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
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  #14  
Old Mon Mar 9, 2015, 03:24 PM
Marlene Marlene is online now
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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/cour...entations/7764
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. FE is down to 384.

Last edited by Marlene : Mon Mar 9, 2015 at 03:35 PM. Reason: Add webcast info
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  #15  
Old Mon Mar 9, 2015, 08:08 PM
Cheryl C Cheryl C is offline
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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.
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Dx MDS RAEB 10% blasts + hypogammaglobulinaemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so planned BMT cancelled. Re-diagnosis RCMD. Decided to watch and wait. Gamma globulin infusions 4-weekly. Pancytopenia. BMB 12 Feb 14 - no blast transformation.
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  #16  
Old Mon Mar 9, 2015, 10:21 PM
tom30 tom30 is offline
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-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.
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Tom- 55 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA.
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  #17  
Old Tue Mar 24, 2015, 12:01 PM
Lulu Lulu is offline
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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!
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F47, dx Fibrotic MDS (RAEB). Normal cytogenetics. Treating nutritionally. Last transfusion Aug 2012.
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  #18  
Old Thu Mar 26, 2015, 05:13 PM
Marlene Marlene is online now
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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
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. FE is down to 384.
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  #19  
Old Mon May 18, 2015, 02:21 PM
Lulu Lulu is offline
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low dose naltrexone

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.
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F47, dx Fibrotic MDS (RAEB). Normal cytogenetics. Treating nutritionally. Last transfusion Aug 2012.
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