Guest guest Posted May 22, 2003 Report Share Posted May 22, 2003 depends on who you talk to... the folks that advocate LDN say the problem is not overactivity but immunodeficiency; iow's it's not working correctly and the endorphins triggered by the LDN helps correct for that. From the website: " Since endorphin levels are low in people with MS, immune function is poorly orchestrated with significant impairment of the normal immune supervisory function of CD4 cells. " So I'm not an expert but have enough biochemistry backround to understand this theory and it seems like a winner to me. Just the number of people it has helped is impressive... Phil Harding University of Michigan On Thu, 22 May 2003, ita wrote: > Hello > I am new to this group. I have heard of LDN for a long time, but > never did mention it to my neuro. He is very good and listens to my > thoughts. I will mention it to him > If LDN boosts your immune system, isn't that bad? I always thought > that MS was caused by your immune system working too hard already! > Anyway, thanks for your thoughts. > ita > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2003 Report Share Posted May 22, 2003 It's funny that you should mention this about your immune system - I head the same thing last week in my MS Support Group from one of the speakers who is a doctor. The immune system of an MS patient is overactive. In fact they mentioned that you need to be careful of taking too many supplements. However, it is my understanding that LDN regulates your immune system which is slightly different than building. I may be wrong, but that was my understanding. -----Original Message-----From: ita [mailto:nitanote@...]Sent: Thursday, May 22, 2003 1:33 PMlow dose naltrexone Subject: [low dose naltrexone] Am I right or wrong?HelloI am new to this group. I have heard of LDN for a long time, but never did mention it to my neuro. He is very good and listens to my thoughts. I will mention it to himIf LDN boosts your immune system, isn't that bad? I always thought that MS was caused by your immune system working too hard already!Anyway, thanks for your thoughts.ita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2009 Report Share Posted October 8, 2009 Hi All I stuck my giant size 12 mouth in it two days ago. My stepson's mother has just been diagnosed with breast cancer and I'm afraid I reacted very angrily. Angrily because for the past four years, since my own CML diagnosis, she has not had an ounce of regard or understanding for my tiredness and lethargy (I'm currently on 800mg Glivec). Both my husband and myself have constantly had to make her own life as easy as possible so she can have her " free time " when fetching and taking kids back on an 2+ hours journey when they come to visit. She said that my comments were " pathetic and disgusting " and that I wanted some kind of " competition " . She's wrong. Maybe I was pathetic and disgusting with my words but I would never wish any kind of cancer on anyone. I was merely trying to point out that maybe now that she is in the unfortunate boat along with others, she could perhaps start to appreciate how others feel. I'm wracked with guilt but at the same time her treatment to us has been awful. Feel free to tell me I'm wrong. I just can't put CML under the carpet and pretend that it doesn't exist. However, I do get on with things as best I can, in the hope that I do get some kind of understanding that if I can't do things then I just can't, or if I'm too tired, then I'm too tired. On a happier note, my oncologist is decreasing my Glivec to 600mg (from 800mg) for six months and then I'm hopefully going on the Tasigna trial at Melbourne. This is because my level is always bordering around 0.001 or 0.002 level and never reaching PCRU, even though the Glivec level in my body is 2160 (normal level is around 1000). Also, the side effects with Glivec are pretty mean. I hope the side effects with Tasigna will be more gentle. I read with interest most of the posts. Thank you for listening to my whinge ... Feeling a little down today. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2009 Report Share Posted October 8, 2009 HI JACKIE, NO, I DON'T THINK YOU WERE MEAN, OR PATHETIC, I THINK YOU WERE BEING QUITE HONEST. I HAD A NEPHEW WHO WAS A MISERABLE PERSON AS A KID AND DIDN'T GET ANY BETTER AS AN ADULT, AND HOW HE EVER MARRIED A SWEET WONDERFUL WOMAN AMAZED US ALL. (of course, she was wife #4) BUT SHE GOT CANCER AND WAS ON CHEMO FOR ALMOST 11 YEARS, SUFFERED THE AGONIES OF HELL, WAS BALD MOST OF THAT TIME ETC. HE NEVER WENT WITH HER TO THE HOSPITAL, HE NEVER SYMPATHIZED WITH HER, HE NEVER MADE HER LIFE EASY......THEN HE GOT CANCER. ALTHOUGH HIS WIFE WAS A SWEETIE TO HIM, WE ALL THOUGHT TERRIBLE THOUGHTS, LIKE, NOW HE KNOWS THE HELL SHE HAS GONE THROUGH, AND IT ALMOST SERVED HIM RIGHT, AND ALL THOSE THINGS. WELL, HE DIED, I AM SORRY TO SAY, A TERRIBLE DEATH, AND SHE FOLLOWED HIM 4 MONTHS LATER, AND EVEN THOUGH HE WAS THE BLOOD RELATIVE, WE ALL GRIEVED MORE FOR HER THAN FOR HIM. WE CAN'T HELP WHO WE ARE, AND WE CAN'T STOP VENGEFUL THOUGHTS OR WORDS FROM COMING FROM US, AND MAY GOD FORGIVE ME, I TRULY HATED THAT LITTLE MONSTER FOR THE WAY HE TREATED HER. FORGET WHATEVER IT WAS YOU SAID TO HER, YOU CAN'T TAKE IT BACK, AND MAYBE SHE SHOULD REMEMBER IT THE REST OF HER LIFE AND MAYBE IT WILL CHANGE HER ATTITUDE. IT IS TOO BAD YOU ARE HAVING SUCH DIRE EFFECTS FROM GLEEVEC AS YOU ARE DOING SO WELL WITH IT. MAYBE YOU SHOULD STICK WITH IT A BIT LONGER AND SEE HOW 600 WILL EFFECT YOU, RATHER THAN GO TO SOMETHING YOU DON'T KNOW. hOPEFULLY YOU WILL NOTICE A BIG DIFFERENCE IN THE NEXT 6 MONTHS, I BELIEVE SOMETHING WE ARE FAMILAR WITH IS BETTER THAN GOING TO SOMETHING WE ARE NOT. AND THOSE NUMBERS ARE FANTASTIC, I WOULDN'T BOTHER TO STRIVE FOR ANYTHING BETTER THAN THAT, BUT THEN I HAVE HAD CML FOR OVER 14 YEARS AND JUST NOW REACHED 0.017 !!! HAVE A GREAT DAY AND " DON'T SWEAT THE PETTY THINGS AND DON'T PET THE SWEATY THINGS!! " BOBBY a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 Interferon/9 weeks/hydroxyurea/5 years 02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228 trial/U of Michigan 01/09/ - PCR 5.69 02/13/09 - XL228 trial ended due to side effects o4/13/09 - Ariad Trial U of Michigan 09/09/09 - PCR 0.017 04/13/09 - Ariad trial at U. of Michigan 09/09/09 - PCR 0.017 04/13/09 - Ariad trial, U. of Michigan 09/08/09 - PCR 0.017 From: Jackie Petropoulos <jackie@...> Subject: RE: [ ] Am I right or wrong? Date: Thursday, October 8, 2009, 5:24 AM Hi All I stuck my giant size 12 mouth in it two days ago. My stepson's mother has just been diagnosed with breast cancer and I'm afraid I reacted very angrily. Angrily because for the past four years, since my own CML diagnosis, she has not had an ounce of regard or understanding for my tiredness and lethargy (I'm currently on 800mg Glivec). Both my husband and myself have constantly had to make her own life as easy as possible so she can have her " free time " when fetching and taking kids back on an 2+ hours journey when they come to visit. She said that my comments were " pathetic and disgusting " and that I wanted some kind of " competition " . She's wrong. Maybe I was pathetic and disgusting with my words but I would never wish any kind of cancer on anyone. I was merely trying to point out that maybe now that she is in the unfortunate boat along with others, she could perhaps start to appreciate how others feel. I'm wracked with guilt but at the same time her treatment to us has been awful. Feel free to tell me I'm wrong. I just can't put CML under the carpet and pretend that it doesn't exist. However, I do get on with things as best I can, in the hope that I do get some kind of understanding that if I can't do things then I just can't, or if I'm too tired, then I'm too tired. On a happier note, my oncologist is decreasing my Glivec to 600mg (from 800mg) for six months and then I'm hopefully going on the Tasigna trial at Melbourne. This is because my level is always bordering around 0.001 or 0.002 level and never reaching PCRU, even though the Glivec level in my body is 2160 (normal level is around 1000). Also, the side effects with Glivec are pretty mean. I hope the side effects with Tasigna will be more gentle. I read with interest most of the posts. Thank you for listening to my whinge ... Feeling a little down today. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2009 Report Share Posted October 8, 2009 Jackie, I understand the way you feel. It seems that she has no empathy for you over these past 4 years. It is difficult to feel sorry for someone that has treated you badly regarding your diagnosis and the way you have been feeling. don't beat yourself up. On Oct 8, 2009, at 5:24 AM, Jackie Petropoulos wrote: > > > Angrily because for the past four years, since my own CML diagnosis, > she has > not had an ounce of regard or understanding for my tiredness and > lethargy > (I'm currently on 800mg Glivec). Both my husband and myself have > constantly > had to make her own life as easy as possible so she can have her > " free time " > when fetching and taking kids back on an 2+ hours journey when they > come to > visit. > > She said that my comments were " pathetic and disgusting " and that I > wanted > some kind of " competition " . She's wrong. Maybe I was pathetic and > disgusting > with my words but I would never wish any kind of cancer on anyone. > > I Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2009 Report Share Posted October 8, 2009 Jackie You know the great thing about CML - you appreciate life - one of the great positives of having a condition !! You do not have to listen to bullsh.. anymore !! Maybe your statements to her maybe the wake-up call to her to one of life's lessons. So you gave her a bit of biffo - so what !! She is a big girl - she will get over it Have abit of compassion for yourself Now - It is your attitude that is a concern - this is a " GUILT FREE GROUP " Cyber Hugs Sue (Aussie) __________ Information from ESET NOD32 Antivirus, version of virus signature database 4491 (20091008) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2009 Report Share Posted October 9, 2009 Hi Jackie: I might of missed some of the message, but I got the idea of what happened. I have gone through similar situations, and I think people think that once your on medication that your on your way to recovery so they are not concerned or can even relate to what we go through. 800mg.WOW I can only imagine how you have been feeling. I have always been on 400mg, and it wipes me out. I would not feel guilty. Let her see how she deals with her problem, and she might come to realize what it has been like for you. Just let it go, and you might be surprised at her attitude as time goes on. Take Care and Relax > > Hi All > > > > I stuck my giant size 12 mouth in it two days ago. My stepson's mother has > just been diagnosed with breast cancer and I'm afraid I reacted very > angrily. > > > > Angrily because for the past four years, since my own CML diagnosis, she has > not had an ounce of regard or understanding for my tiredness and lethargy > (I'm currently on 800mg Glivec). Both my husband and myself have constantly > had to make her own life as easy as possible so she can have her " free time " > when fetching and taking kids back on an 2+ hours journey when they come to > visit. > > > > She said that my comments were " pathetic and disgusting " and that I wanted > some kind of " competition " . She's wrong. Maybe I was pathetic and disgusting > with my words but I would never wish any kind of cancer on anyone. > > > > I was merely trying to point out that maybe now that she is in the > unfortunate boat along with others, she could perhaps start to appreciate > how others feel. > > > > I'm wracked with guilt but at the same time her treatment to us has been > awful. > > > > Feel free to tell me I'm wrong. I just can't put CML under the carpet and > pretend that it doesn't exist. However, I do get on with things as best I > can, in the hope that I do get some kind of understanding that if I can't do > things then I just can't, or if I'm too tired, then I'm too tired. > > > > On a happier note, my oncologist is decreasing my Glivec to 600mg (from > 800mg) for six months and then I'm hopefully going on the Tasigna trial at > Melbourne. This is because my level is always bordering around 0.001 or > 0.002 level and never reaching PCRU, even though the Glivec level in my body > is 2160 (normal level is around 1000). Also, the side effects with Glivec > are pretty mean. I hope the side effects with Tasigna will be more gentle. I > read with interest most of the posts. > > > > Thank you for listening to my whinge ... > > > > Feeling a little down today. > > Jackie > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.