Guest guest Posted November 17, 2005 Report Share Posted November 17, 2005 Hi Kurt - I have always been skeptical about prognostics AT LATER STAGES OF THE DISEASE. The thought was sort of " what's done is done " . All these things at Quest were not available when I was diagnosed in 1997. I had them done recently, but have not had the courage to look, why make myself nuts? HOWEVER, I agree with you 100% that these days a newly diagnosed patient MUST have all the tests done. It does indeed make a difference to the type of TX, to the aggressiveness of the TX, etc. Times have changed and these are now useful, no, necessary tools. I believe that Chlor plus Rit will have a positive effect, I feel in my gut that you will benefit from it. I am now rather limited by the parasite (which still has not been killed), but just yesterday I was cleared by the infectious disease guy to take IVIG or Rituxan, if the hematologists (and I) think it useful, so at least that gives us a chance to do something about the disease and the basic hemolysis. Best wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2005 Report Share Posted November 17, 2005 Good luck, , on your treatments. Yes, I did misunderstand the group that was being closed. Carolyn --- jb50192@... wrote: > Hi Kurt - I have always been skeptical about > prognostics AT LATER STAGES OF > THE DISEASE. The thought was sort of " what's done is > done " . > > All these things at Quest were not available when I > was diagnosed in 1997. I > had them done recently, but have not had the courage > to look, why make myself > nuts? > > HOWEVER, I agree with you 100% that these days a > newly diagnosed patient MUST > have all the tests done. It does indeed make a > difference to the type of TX, > to the aggressiveness of the TX, etc. Times have > changed and these are now > useful, no, necessary tools. > > I believe that Chlor plus Rit will have a positive > effect, I feel in my gut > that you will benefit from it. > > I am now rather limited by the parasite (which still > has not been killed), > but just yesterday I was cleared by the infectious > disease guy to take IVIG or > Rituxan, if the hematologists (and I) think it > useful, so at least that gives > us a chance to do something about the disease and > the basic hemolysis. > > Best wishes, > > > [Non-text portions of this message have been > removed] > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 How long have you been treated and how are you doing? If you don't mind me asking. jan > > hi, yes its possible. im 42 and ive had lyme for 42 years. kurt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 hi jan, treating now for about 7 months. actually doing very well, of course i do complain and whine but only to myself. i just try to remind myself how bad it could be. now i am treating all naturally, holistically, no more pharmaceutical crap for me. if your interested take a look at lymestrategies, salt/c protocol. peace, kurt jan <jpos123@...> wrote: How long have you been treated and how are you doing? If you don't mind me asking. jan > > hi, yes its possible. im 42 and ive had lyme for 42 years. kurt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 Hi Kurt, I'm glad to hear you're doing well! That's pretty exciting, esp. having had it 42 yrs.! My LLMD has me taking a natural approach, too and I like that. Except for the diet part, avoiding sugar and wheat (and milk,but that's easy), I don't know what to eat. I have lost 5lbs. since just avoiding the sugar. 5 that I did not want to lose. I am having a hard time finding a nutritionist, it's ridiculous! There is one I really would like to see, but he doesn't accept insurance, either. Between him and my LLMD we could very well gobroke. He's written papers about Lyme in the bowel, too, and that is what I have among many other problems from it. I will see my LLMD for the 2nd time next Tues. I'm excited even though I don't know what to expect. jan > > hi jan, treating now for about 7 months. actually doing very well, of course i do complain and whine but only to myself. i just try to remind myself how bad it could be. now i am treating all naturally, holistically, no more pharmaceutical crap for me. if your interested take a look at lymestrategies, salt/c protocol. peace, kurt > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 Jan, Take a look at the books, _Protein Power_ and _The Protein Power Lifeplan_ by Dan Eades and Eades. (I hope I'm remembering that right.) It's not really a high-protein diet, despite the name. I started the whole no-starch, no-sugar thing about 6 years ago, and I think it is a large part of the reason I am doing as well as I am. It really knocked back the symptoms, long before I was diagnosed or treated. Good luck with it!! D. jan <jpos123@...> wrote:My LLMD has me taking a natural approach, too and I like that. Except for the diet part, avoiding sugar and wheat (and milk,but that's easy), I don't know what to eat. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2007 Report Share Posted August 9, 2007 My prayers are with Kurt and all who know and care about him. JudyGet a sneak peek of the all-new AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2007 Report Share Posted August 11, 2007 All of my best wishes are with Kurt. Sending much light. Marietta <html><div><BLOCKQUOTE dir=ltr style= " MARGIN-RIGHT: 0px " > <P align=center><FONT face= " Verdana, Geneva, Arial, Sans-serif " color=#33ccff><EM><STRONG>Marietta Brill <BR></STRONG>cell: 718-938-8712 <BR></EM></FONT></P></BLOCKQUOTE></div></html> ----Original Message Follows---- From: jb50192@... Reply- Subject: Kurt Date: Thu, 9 Aug 2007 17:54:31 EDT Some of you were on the list earlier and remember Kurt Grayson's frequent contributions. Kurt is very sick. The Chlorambucil+Rituxan has stopped working, and three cycles of Fludara+Cytoxan+Rituxan did not do him any good. He is very weak, and has a very large spleen. A spleenectomy has been suggested, but many of his advisors feel that he is in too bad shape to tolerate such surgery. To make a long story short, he has decided to take the proactive step of traveling East, with the help of his nephew, and checking into New York Presbyterian to be treated by our own Dr. Furman. I'm sure we all wish him the very best. Although he holds strong opinions on some subjects, and has a most peculiar sense of humor, he's a heck of a guy, and has helped many people....... I will keep you posted. ************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour Quote Link to comment Share on other sites More sharing options...
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