Home         Forums  

Go Back   Marrowforums > Treatments > Alternative Treatments
Register FAQ Search Today's Posts Mark Forums Read

Alternative Treatments Complementary and alternative medicine; natural and holistic approaches

Reply
 
Thread Tools Search this Thread
  #1  
Old Sun Sep 2, 2007, 07:09 PM
seniorrico seniorrico is offline
Member
 
Join Date: Sep 2006
Posts: 29
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.
Reply With Quote
  #2  
Old Sun Sep 2, 2007, 08:44 PM
Zoe's Life Zoe's Life is offline
Member
 
Join Date: May 2007
Location: Logan, Ohio
Posts: 127
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
__________________
Diagnosed MDS-RA 5q- at age 47 (November 2006). Aranesp 2/07, good response.
Reply With Quote
  #3  
Old Mon Sep 3, 2007, 10:36 AM
Marlene Marlene is offline
Member
 
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,042
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
__________________
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.
Reply With Quote
  #4  
Old Mon Sep 3, 2007, 05:14 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 1,941
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.
Reply With Quote
  #5  
Old Tue Sep 4, 2007, 09:58 AM
Marlene Marlene is offline
Member
 
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,042
No, Bruce has progressed to MDS....M
__________________
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.
Reply With Quote
  #6  
Old Mon Sep 10, 2007, 12:21 PM
Tom M Tom M is offline
Member
 
Join Date: May 2007
Posts: 36
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.
__________________
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.
Reply With Quote
  #7  
Old Tue Sep 11, 2007, 12:38 PM
koyotekathy koyotekathy is offline
Member
 
Join Date: Jul 2007
Location: Phoenix, Arizona
Posts: 11
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!
Reply With Quote
  #8  
Old Wed Oct 3, 2007, 12:18 PM
leslie s leslie s is offline
Member
 
Join Date: Oct 2007
Posts: 3
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
Reply With Quote
  #9  
Old Sat Nov 3, 2007, 09:55 PM
Vivvi Vivvi is offline
Member
 
Join Date: Oct 2007
Posts: 3
Quote:
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.
Reply With Quote
  #10  
Old Sat Nov 3, 2007, 11:36 PM
Zoe's Life Zoe's Life is offline
Member
 
Join Date: May 2007
Location: Logan, Ohio
Posts: 127
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
__________________
Diagnosed MDS-RA 5q- at age 47 (November 2006). Aranesp 2/07, good response.
Reply With Quote
  #11  
Old Tue Apr 15, 2008, 01:57 PM
JAC JAC is offline
Member
 
Join Date: Nov 2007
Posts: 3
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?
__________________
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.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Larry Gard's Background larry gard Tell Your Story 2 Sun Nov 30, 2008 01:02 AM
New Member/Dad with MDS choijk MDS 24 Sun Jun 1, 2008 02:24 AM
Medicare may restrict access to growth factors -- unless we speak up Marrowforums News and Events 4 Fri Aug 3, 2007 01:30 AM
Mom with MDS has shingles, eye infection and infected toe Kathyete Questions and Answers 1 Fri Jun 22, 2007 01:53 PM
Loretta Vandergriff's MDS story Loretta Tell Your Story 2 Wed Aug 23, 2006 09:55 PM


All times are GMT -4. The time now is 11:59 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright 2006-2012 Marrowforums.org