Guest guest Posted March 29, 2004 Report Share Posted March 29, 2004 Don, Yes, I am active with the ACOR board. In actuality, I think it was an e-mail from you that led me there . . . after I had posted on the LDN board. I found out about LDN for my wife - to take for MS. As I read over the LDN web site, I saw a testimonial on somebody with multiple myeloma. So, I started reading everything I could about it. I have a pretty bad case of peripheral neuropathy from all the thalidomide they pumped into me, so, one visit I talked with our neurologist about trying LDN myself. I have not seen a great change in my monthly blood work numbers. It's been a ten-year roller coaster ride, but I'll ride forever if I have to, just to stay away from any of the heavy chemicals or radiations. That's my goal. I do a lot in the alternative areas - for body, mind, and spirit. I've done homeopathy, acupuncture, Dr. Mathias Rath's protocol, and now I'm trying a variety of products I learned about on www.cancer-prevention.com. Big into the oxygen and U-fucoidan. Also the MPS Gold and the carrot juice. But, I will stay with LDN for the long haul because if it helps only 10% to enable my immune system to re-discover itself, I figure I'm the better off for it. My insurance covers 80% of the cost, it's not going to do me any harm, so I'm there. I read a lot to keep my head screwed on right. I've learned Reiki and visualization through guided imagery. All are pieces of the pie which constitute my struggle to live with this thing until I can get rid of it. This is a pretty sketchy overview, but over 10 years I could write a book by now. But then again, we're all in this together. -AlFrom: Don Schultz [mailto: donschultz@...]low dose naltrexone Cc: faddle54444@...Date: Sun, 28 Mar 2004 22:54:28 -0600Subject: [low dose naltrexone] MGUS and LDNGreetings,My wife has had active mm for nearly 3 years. I'd really like to hear more detail re yourpath to try LDN, and some word also on how your numbers are tracking with it.Are you a member of the ACOR mm listserver?My signature includes much of Barb's treatment history.[To Join or Leave the list, go to => http://www.acor.org/myeloma.html ]A merry heart doeth good like a medicine: but a broken spirit drieth the bones. Proverbs 17:22Don Schultz (no medical training, and not terribly bright)Near Joliet IL. Husband and Caregiver to Barb Schultz, born '49Dx'd June/01; IgA Kappa @5,880, B2M 7.8, Radiation to L3, Aredia 6X now Zometa monthly,100mg Thal daily & 40mgX4days pulsed Dex thru Dec '01 when failed; Mar-Jun/02 2 rounds VAD noeffect & 2 rounds DTPACE modest effect; autoSCT July/02 full remission in Sep/02. Interferonmaint' Aug/02 to Jan 03; Jan 03 IgA climbing; Feb 03 Hi dose Dex Failed, Velcade Phase3trial Mar/03 complete response in 2 cycles, Jan 2004 Velcade failed, Starting Revimid Phase 2open label March 04.Blessed be the Lord, who daily loads us with benefits, even the God of our salvation. Selah(pause, consider this) Psalms 68:19http://www.medhelp.org/NIHlib/GF-456.htmlhttp://www.healthtalk.com/multiplemyeloma/diseasebasics.cfmhttp://www.labtestsonline.org/http://www.myeloma.org/http://www.multiplemyeloma.org/-----Original Message-----From: Allan Eisel [mailto:faddle54444@...]Sent: Sunday, March 28, 2004 10:28 PMlow dose naltrexone Subject: [low dose naltrexone] Re: LDN long-term & StiffnessImportance: HighGood evening,I wanted to follow up on the side effect of stiffness. I know that I've seen it addressed offand on over the months I've been on this board, but I didn't pay the close attention that Ishould have - probably because it hasn't affected me that way. My wife and I have taken LDNfor about eight months now - me for MGUS (smoldering multiple myeloma) and her for MS. Shetook a 3 mg. dosage for about six months until the stiffness got to be too much for her . . .and then cut back to 1.5 mg. That seemed to help for nearly two months, but now even the 1.5seems to be giving her a lot of stiffness problems. I guess I'm looking for suggestions as towhere she can go from here. She doesn't want to give up the use of LDN, but she doesn't wantto have to deal with the degree of stiffness and soreness that she's experiencing now either.Anybody have any luck minimizing stiffness problems, and, if so, how did you do it? Anyinsights or recommendations would be greatly appreciated. Thanks in advance.-Al Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2004 Report Share Posted March 29, 2004 Thank you for the response. Sorry to hear you got clobbered by Thalidomide. Seems unusual in MGUS, but perhaps you are in a period of very low disease activity now where the disease was active earlier. We have the same goal for LDN with regard to MM. I'm hoping to see Barb extend responses since her mm has been very aggressive. I'm not promoting the LDN use to the ACOR listserver at this time because it would cause a bunch of people to try it, when I can't be sure of its efficacy or possible side effects/interactions, as low as the chances might be. I may give it a year before I talk about it. IMO there may be AIDS related treatments that will help myelomics by reving up the T cell side of the immune system. Don Schultz -----Original Message-----From: Allan Eisel [mailto:faddle54444@...]Sent: Sunday, March 28, 2004 11:49 PMlow dose naltrexone Subject: RE: [low dose naltrexone] MGUS and LDNImportance: High Don,Yes, I am active with the ACOR board. In actuality, I think it was an e-mail from you that led me there . . . after I had posted on the LDN board. I found out about LDN for my wife - to take for MS. As I read over the LDN web site, I saw a testimonial on somebody with multiple myeloma. So, I started reading everything I could about it. I have a pretty bad case of peripheral neuropathy from all the thalidomide they pumped into me, so, one visit I talked with our neurologist about trying LDN myself. I have not seen a great change in my monthly blood work numbers. It's been a ten-year roller coaster ride, but I'll ride forever if I have to, just to stay away from any of the heavy chemicals or radiations. That's my goal.I do a lot in the alternative areas - for body, mind, and spirit. I've done homeopathy, acupuncture, Dr. Mat hias Rath's protocol, and now I'm trying a variety of products I learned about on www.cancer-prevention.com. Big into the oxygen and U-fucoidan. Also the MPS Gold and the carrot juice. But, I will stay with LDN for the long haul because if it helps only 10% to enable my immune system to re-discover itself, I figure I'm the better off for it. My insurance covers 80% of the cost, it's not going to do me any harm, so I'm there. I read a lot to keep my head screwed on right. I've learned Reiki and visualization through guided imagery. All are pieces of the pie which constitute my struggle to live with this thing until I can get rid of it. This is a pretty sketchy overview, but over 10 years I could write a book by now. But then again, we're all in this together.-Al Quote Link to comment Share on other sites More sharing options...
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