Guest guest Posted April 9, 2003 Report Share Posted April 9, 2003 Not really sure how to answer this cuz the way I understand it LDN is not meant to help with symptoms, rather to halt any further progress of the MS. If you did receive symptom relief, could it be a kind of placebo effect? Or, perhaps just your normal pattern of improvement after an attack? As far as the doseage, I'd bump up to the 4.5 mg simply because that is the recommended doseage according to Dr. Bihari after years of research. Of course there is no guarantee that this is the perfect doseage for everyone but certainly worth persueing I'd say. I upped my doseage from 3 mg to 4.5mg about 6 months ago or so. Just recently switched compounders. Just felt better about using a compounder that is filling this particular prescription for many ms'ers. Hope that helps you. Any other thoughts on this subject?? Joyce. >From: " ljhs12003 " <ljhs1@...> >low dose naltrexone >Subject: [low dose naltrexone] LDN and MS >Date: Tue, 08 Apr 2003 15:49:09 -0000 > >I have been taking 3 mg. LDN nightly for almost three months. The >first few weeks were dramatic- no spasms, balance improved, hand >writing great,and less fatigue. However, I have lost all benefits >except decreased fatigue. I will see my prescribing GP soon to ask >for increase in dose to 4.5 mg. Has anyone else had similar >experiences?? > _________________________________________________________________ Help STOP SPAM with the new MSN 8 and get 2 months FREE* http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2003 Report Share Posted April 9, 2003 Oh boy..pretty sure that the LDN is NOT for symtom relief Larry but to halt the ms progression. From what I understand you can still have symptoms of old attacks but should not have another attack that furthers your progression. Does anyone have a different take on this? This is an important fact to know. Many of us are applying the histamine drops for symptom relief or taking Precarin along with the LDN. Perhaps Gluck can weigh in on this issue. Good luck Larry. Joyce. >From: " LarryGC " <larrygc@...> > " wkendz 32 " <wkendz32@...> >Subject: Re: [low dose naltrexone] LDN and MS >Date: Wed, 9 Apr 2003 08:58:38 -0400 > >That's opposite of what I was thinking. I thought LDN didn't do anything >for >the MS, but for the symptoms we typically live with ???? > > >----- Original Message ----- >From: " wkendz 32 " <wkendz32@...> ><ljhs1@...> >Cc: <low dose naltrexone > >Sent: Wednesday, April 09, 2003 08:27 >Subject: Re: [low dose naltrexone] LDN and MS > > > > Not really sure how to answer this cuz the way I understand it LDN is >not > > meant to help with symptoms, rather to halt any further progress of the >MS. > > If you did receive symptom relief, could it be a kind of placebo effect? >Or, > > perhaps just your normal pattern of improvement after an attack? As far >as > > the doseage, I'd bump up to the 4.5 mg simply because that is the > > recommended doseage according to Dr. Bihari after years of research. Of > > course there is no guarantee that this is the perfect doseage for >everyone > > but certainly worth persueing I'd say. I upped my doseage from 3 mg to >4.5mg > > about 6 months ago or so. Just recently switched compounders. Just felt > > better about using a compounder that is filling this particular >prescription > > for many ms'ers. Hope that helps you. Any other thoughts on this >subject?? > > _________________________________________________________________ Protect your PC - get McAfee.com VirusScan Online http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2003 Report Share Posted April 9, 2003 my understanding is that it effective in MS against the virus that is wreaking the havoc by depressing its action, the immune system is able to cope with neutralizing it, thus taking away further attacks. I don't want to pretend to represent the science on this, but I did speak with the researcher who has the patent on LDN and this is what I think he said. The flood of endorphins that follow help re-balance the immune system, making it more effective. He has research that shows effectiveness even in vitro (cancer cell cultures) even w/o the immune system helping.... So my conclusion is that suppressing the immune system with drugs IS NOT THE WAY TO GO! Rather, the strategy should be to suppress THE VIRUS causing the problem and enhance the immune system thereafter. This is all theoretical at this point, but I for one am going to do a 3 month trial starting asap and see if it does what a lot of people say it does. I will report back to this group my prognosis. Oh yeah, this is probably why it does NOTHING for symptom relief. People have reported they are using the Histamine for that purpose (see below). I will try that as well but I don't have that many symptoms, just balance issues. Phil Harding University of Michigan On Wed, 9 Apr 2003, wkendz 32 wrote: > Oh boy..pretty sure that the LDN is NOT for symtom relief Larry but to halt > the ms progression. From what I understand you can still have symptoms of > old attacks but should not have another attack that furthers your > progression. Does anyone have a different take on this? This is an important > fact to know. Many of us are applying the histamine drops for symptom relief > or taking Precarin along with the LDN. Perhaps Gluck can weigh in on > this issue. Good luck Larry. Joyce. > > > > > >From: " LarryGC " <larrygc@...> > > " wkendz 32 " <wkendz32@...> > >Subject: Re: [low dose naltrexone] LDN and MS > >Date: Wed, 9 Apr 2003 08:58:38 -0400 > > > >That's opposite of what I was thinking. I thought LDN didn't do anything > >for > >the MS, but for the symptoms we typically live with ???? > > > > > >----- Original Message ----- > >From: " wkendz 32 " <wkendz32@...> > ><ljhs1@...> > >Cc: <low dose naltrexone > > >Sent: Wednesday, April 09, 2003 08:27 > >Subject: Re: [low dose naltrexone] LDN and MS > > > > > > > Not really sure how to answer this cuz the way I understand it LDN is > >not > > > meant to help with symptoms, rather to halt any further progress of the > >MS. > > > If you did receive symptom relief, could it be a kind of placebo effect? > >Or, > > > perhaps just your normal pattern of improvement after an attack? As far > >as > > > the doseage, I'd bump up to the 4.5 mg simply because that is the > > > recommended doseage according to Dr. Bihari after years of research. Of > > > course there is no guarantee that this is the perfect doseage for > >everyone > > > but certainly worth persueing I'd say. I upped my doseage from 3 mg to > >4.5mg > > > about 6 months ago or so. Just recently switched compounders. Just felt > > > better about using a compounder that is filling this particular > >prescription > > > for many ms'ers. Hope that helps you. Any other thoughts on this > >subject?? > > > > > > > _________________________________________________________________ > Protect your PC - get McAfee.com VirusScan Online > http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2003 Report Share Posted April 9, 2003 When I went for allergy testing, each test they gave me histamine and they expected to see a reaction. Aren't we allergic to histamine? Most of my MS flare ups have been from allergic reactions. Why would you TAKE histamines? I thought were supposed to be anti-histamine? When I read the website, I got the impression that it helped RLS, BU, spasms and fatigue also. I would imagine 3 months would be a good trial. Not sure what it'll do, but I'm going on the theory that it just can't hurt! ----- Original Message ----- From: " G. Harding " <philh@...> " wkendz 32 " <wkendz32@...> Cc: <larrygc@...>; <low dose naltrexone > Sent: Wednesday, April 09, 2003 13:36 Subject: Re: [low dose naltrexone] LDN and MS > my understanding is that it effective in MS against the virus that is > wreaking the havoc by depressing its action, the immune system is able to > cope with neutralizing it, thus taking away further attacks. I don't want > to pretend to represent the science on this, but I did speak with the > researcher who has the patent on LDN and this is what I think he said. > The flood of endorphins that follow help re-balance the immune system, > making it more effective. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2003 Report Share Posted April 10, 2003 I don't understand why histamine works but your body produces them, inappropriately in response to an allergen (such as pollen) -- it *overproduces* them in large amounts, that's why again, allopathic medicine suppresses that response (that may be appropriate in some or all cases) in the form of anti-histamines. From the website http://www.goodshape.net/ : " .... increasing your body's Histamine level will activate certain Neurotransmitters lacking in some people with MS and that there is some evidence that it will help with digestion and the assimilation of vitamins " So there you go, it may or not work, but I KNOW STEROID & CHEMOTHERAPY do NOT work (and cause people to get sicker!), so what have I got to lose? Outside all this science, are people having good results with LDN to stop the progression and histamine patches to alleviate some symptoms (anecdotal data admittedly but who needs a multi-$ study funded by a pharmaceutical company if we know ourselves it works?) Besides if there isn't money to be made there won't be any clinical studies done. Today I talked to the researcher who *has the patent on LDN*. Bihari read his paper 20 years ago and started treating his cancer patients with it -- many with great results. He has treated some 70 MS patients, 98% having positive results with LDN. This researcher is at Penn State and doesn't feel it appropriate getting money from state-funded research. He mainly works on LDN-cancer research but just got a Crohn's patient so he is starting auto-immune research. I am optimistic about the possibilities of both LDN and histamine but realize that they may not work for me as they did for other people, but then I'm only out some time and an insignificant amount of money. My two cents. On Wed, 9 Apr 2003, LarryGC wrote: > When I went for allergy testing, each test they gave me histamine and they > expected to see a reaction. Aren't we allergic to histamine? Most of my MS > flare ups have been from allergic reactions. Why would you TAKE histamines? I > thought were supposed to be anti-histamine? > > When I read the website, I got the impression that it helped RLS, BU, spasms > and fatigue also. > > I would imagine 3 months would be a good trial. Not sure what it'll do, but > I'm going on the theory that it just can't hurt! > > > ----- Original Message ----- > From: " G. Harding " <philh@...> > " wkendz 32 " <wkendz32@...> > Cc: <larrygc@...>; <low dose naltrexone > > Sent: Wednesday, April 09, 2003 13:36 > Subject: Re: [low dose naltrexone] LDN and MS > > > > my understanding is that it effective in MS against the virus that is > > wreaking the havoc by depressing its action, the immune system is able to > > cope with neutralizing it, thus taking away further attacks. I don't want > > to pretend to represent the science on this, but I did speak with the > > researcher who has the patent on LDN and this is what I think he said. > > The flood of endorphins that follow help re-balance the immune system, > > making it more effective. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2003 Report Share Posted April 10, 2003 You are so right about steroids and chemo. I had one infection after another after 2 chemo treatments. I've never recovered from it and I got my first infection 6 months ago. They tried steroids to help me recover and it made me even worse. I was so excited to hear about LDN and to talk to so many people who have had success with it. I talked to Dr. Bihari for almost 2 hours before he had the medication shipped to me and I was really encouraged by his explanations of how LDN works. -----Original Message-----From: G. Harding [mailto:philh@...]Sent: Wednesday, April 09, 2003 8:37 PMLarryGCCc: LDN groupSubject: Re: [low dose naltrexone] LDN and MSI don't understand why histamine works but your body produces them,inappropriately in response to an allergen (such as pollen) -- it*overproduces* them in large amounts, that's why again, allopathicmedicine suppresses that response (that may be appropriate in some or allcases) in the form of anti-histamines.From the website http://www.goodshape.net/ :".... increasing your body's Histamine level will activate certainNeurotransmitters lacking in some people with MS and that there is someevidence that it will help with digestion and the assimilation ofvitamins"So there you go, it may or not work, but I KNOW STEROID & CHEMOTHERAPY doNOT work (and cause people to get sicker!), so what have I got to lose?Outside all this science, are people having good results with LDN tostop the progression and histamine patches to alleviate some symptoms(anecdotal data admittedly but who needs a multi-$ study funded by apharmaceutical company if we know ourselves it works?) Besides if thereisn't money to be made there won't be any clinical studies done.Today I talked to the researcher who *has the patent on LDN*. Bihari readhis paper 20 years ago and started treating his cancer patients with it --many with great results. He has treated some 70 MS patients, 98% havingpositive results with LDN. This researcher is at Penn State and doesn'tfeel it appropriate getting money from state-funded research. He mainlyworks on LDN-cancer research but just got a Crohn's patient so he isstarting auto-immune research.I am optimistic about the possibilities of both LDN and histamine butrealize that they may not work for me as they did for other people, butthen I'm only out some time and an insignificant amount of money.My two cents.On Wed, 9 Apr 2003, LarryGC wrote:> When I went for allergy testing, each test they gave me histamine and they> expected to see a reaction. Aren't we allergic to histamine? Most of my MS> flare ups have been from allergic reactions. Why would you TAKE histamines? I> thought were supposed to be anti-histamine?>> When I read the website, I got the impression that it helped RLS, BU, spasms> and fatigue also.>> I would imagine 3 months would be a good trial. Not sure what it'll do, but> I'm going on the theory that it just can't hurt!>>> ----- Original Message -----> From: " G. Harding" <philh@...>> "wkendz 32" <wkendz32@...>> Cc: <larrygc@...>; <low dose naltrexone >> Sent: Wednesday, April 09, 2003 13:36> Subject: Re: [low dose naltrexone] LDN and MS>>> > my understanding is that it effective in MS against the virus that is> > wreaking the havoc by depressing its action, the immune system is able to> > cope with neutralizing it, thus taking away further attacks. I don't want> > to pretend to represent the science on this, but I did speak with the> > researcher who has the patent on LDN and this is what I think he said.> > The flood of endorphins that follow help re-balance the immune system,> > making it more effective.>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2003 Report Share Posted September 30, 2003 I've been on LDN since April and have seen no effects whatsoever. On Tue, 30 Sep 2003 noclue915@... wrote: > Everyone reacts differently, just as everyones MS is different. Some have > posted that all symptoms improved , other , that a few have improved. No one can > give you the answer to your question ,we can only tell you how it has > affected us..... > The tingling stopped after a month.(Only my one hand tingled) > Bladder control fully recovered after 1 month . > Energy greatly improved after a week and keeps improving. > Balance better > Walking , still diffficult but can walk longer distance(not by much) > Because I have more energy I can exercise (weights,MS water aerobics, MSyoga) > which is making me stronger.You must help the LDN work. > > Kiki > Quote Link to comment Share on other sites More sharing options...
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