Guest guest Posted July 1, 2006 Report Share Posted July 1, 2006 Mellissa: What type of Vitamin supplements do you take? thanks, winnie stopped Copaxone last year. I hated the daily shots & found myself not wanting to even comply. I didn'tnotice any improvement at all anyway. In fact I feelmuch better being off of it. My insurance stopped whenI quit my job last year. Now I'm on my husband'sinsurance. They will only cover a tiny bit & my partwould be $700 a month. The prescription assistanceprograms don't help me because I do have some sort ofinsurance. So now I just take vitamin supplements tohelp with the fatigue & I haven't had any major flaresthis year. I had been having one every year & had todo Solumedrol treatments. They were mainly for opticneuritis. E.Colorado--- Sharon Marsden wrote:> When did you stop all CRAB drugs? Just wondering if> it's been long enough for results to show on an MRI.> I felt so good when I stopped Avonex and it lasted> for a good while. But my symptoms have gotten so> much worse in the last year. I sure do regret my> decision to stop Avonex. I fear that I may have> wrecked my life by that decision.> > I sincerely hope you continue to do well, Akiba.> > Sharon> > "Insanity runs in my family. It practically gallops."Cary Grant__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2006 Report Share Posted July 1, 2006 Rhodiola Rosea. I bought mine at Wild Oats Market. I also take B12. E. Colorado --- Parpack6@... wrote: > > Mellissa: > > What type of Vitamin supplements do you take? > thanks, winnie > > > > In a message dated 7/1/2006 1:49:49 P.M. Eastern > Daylight Time, > lissa252000@... writes: > > stopped Copaxone last year. I hated the daily shots > & found myself not wanting to even comply. I didn't > notice any improvement at all anyway. In fact I > feel > much better being off of it. My insurance stopped > when > I quit my job last year. Now I'm on my husband's > insurance. They will only cover a tiny bit & my > part > would be $700 a month. The prescription assistance > programs don't help me because I do have some sort > of > insurance. So now I just take vitamin supplements to > help with the fatigue & I haven't had any major > flares > this year. I had been having one every year & had > to > do Solumedrol treatments. They were mainly for > optic > neuritis. > E. > Colorado > > --- Sharon Marsden wrote: > > > When did you stop all CRAB drugs? Just wondering > if > > it's been long enough for results to show on an > MRI. > > I felt so good when I stopped Avonex and it > lasted > > for a good while. But my symptoms have gotten > so > > much worse in the last year. I sure do regret my > > decision to stop Avonex. I fear that I may have > > wrecked my life by that decision. > > > > I sincerely hope you continue to do well, Akiba. > > > > Sharon > > > > > > > " Insanity runs in my family. It practically > gallops. " > Cary Grant > > __________________________________________________ > Do You Yahoo!? > Tired of spam? Yahoo! Mail has the best spam > protection around > http://mail.yahoo.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 : Thank you. I am going to go to Wild Oats and try this out. I have heard from others that vitamin supplements are very good for us (with MS). A friend of a friend of mine has used vitamin supplements for years for his MS and is doing great. Thanks, again, . winnie Rhodiola Rosea. I bought mine at Wild Oats Market. Ialso take B12. E.Colorado--- Parpack6@... wrote:> > Mellissa:> > What type of Vitamin supplements do you take? > thanks, winnie> > > > > > stopped Copaxone last year. I hated the daily shots> & found myself not wanting to even comply. I didn't> notice any improvement at all anyway. In fact I > feel> much better being off of it. My insurance stopped> when> I quit my job last year. Now I'm on my husband's> insurance. They will only cover a tiny bit & my> part> would be $700 a month. The prescription assistance> programs don't help me because I do have some sort > of> insurance. So now I just take vitamin supplements to> help with the fatigue & I haven't had any major> flares> this year. I had been having one every year & had> to> do Solumedrol treatments. They were mainly for > optic> neuritis. > E.> Colorado> > --- Sharon Marsden wrote:> > > When did you stop all CRAB drugs? Just wondering> if> > it's been long enough for results to show on an> MRI.> > I felt so good when I stopped Avonex and it > lasted> > for a good while. But my symptoms have gotten > so> > much worse in the last year. I sure do regret my> > decision to stop Avonex. I fear that I may have> > wrecked my life by that decision.> > > > I sincerely hope you continue to do well, Akiba.> > > > Sharon> > > > > > > "Insanity runs in my family. It practically> gallops."> Cary Grant> > __________________________________________________> Do You Yahoo!?> Tired of spam? Yahoo! Mail has the best spam> protection around > http://mail.yahoo.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 Mindy: Thank you very much for the informative post. I was just talking to my husband, and he told me he has noticed a regression since I have been off the Beta. He practically begged me to go back on. I am going to go see my neuro, (I'm a little embarrassed because I haven't been to see him since stopping the drug) ASAP, and get back on it. My husband just said to me that he wants me to do as well as possible for as long as possible, and he saw no regression while I was on the Beta. Plus the fact that MS is so mysterious, generally, and we have to do what my neuro tells me to do because we totally trust him. He is a really good guy. Again, Mindy, thank you. winnie Be careful when stopping your CRAB drugs. I was on Avonex for nearly five years and then stopped for four years. Because I didn't have many sypmtoms, I assumed my vitamins and supplement were doing the trick. But an MRI showed my MS was fairly active, especially in the cognitive regions of my brain. After a new attack and updated MRI, my neuro begged me to go back on Avonex. I hate the initial side effects but I did and now I regret going off as I've experienced brain atrophy (shrinkage of 20% in my corpus collustrum). The problem with saying some people have done well on supplements and changing their diet, etc is that not everyone's MS is the same. Your MS could be active and you don't know it or fate could determine that your MS would remain quiet for a while or possibly never return. Find a CRAB drug that works for you and continue taking your supplements (I think B12 is great for fatigue)and watch your nutrition. Fight this disease on every battle front.Just my thoughts.Mindy> > > :> > Thank you. I am going to go to Wild Oats and try this out. I have heard > from others that vitamin supplements are very good for us (with MS). A friend > of a friend of mine has used vitamin supplements for years for his MS and is > doing great. > Thanks, again, . winnie> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 Be careful when stopping your CRAB drugs. I was on Avonex for nearly five years and then stopped for four years. Because I didn't have many sypmtoms, I assumed my vitamins and supplement were doing the trick. But an MRI showed my MS was fairly active, especially in the cognitive regions of my brain. After a new attack and updated MRI, my neuro begged me to go back on Avonex. I hate the initial side effects but I did and now I regret going off as I've experienced brain atrophy (shrinkage of 20% in my corpus collustrum). The problem with saying some people have done well on supplements and changing their diet, etc is that not everyone's MS is the same. Your MS could be active and you don't know it or fate could determine that your MS would remain quiet for a while or possibly never return. Find a CRAB drug that works for you and continue taking your supplements (I think B12 is great for fatigue)and watch your nutrition. Fight this disease on every battle front. Just my thoughts. Mindy > > > : > > Thank you. I am going to go to Wild Oats and try this out. I have heard > from others that vitamin supplements are very good for us (with MS). A friend > of a friend of mine has used vitamin supplements for years for his MS and is > doing great. > Thanks, again, . winnie > > > > In a message dated 7/2/2006 1:30:30 A.M. Eastern Daylight Time, > lissa252000@... writes: > > Rhodiola Rosea. I bought mine at Wild Oats Market. I > also take B12. > E. > Colorado > > --- Parpack6@... wrote: > > > > > Mellissa: > > > > What type of Vitamin supplements do you take? > > thanks, winnie > > > > > > > > In a message dated 7/1/2006 1:49:49 P.M. Eastern > > Daylight Time, > > lissa252000@... writes: > > > > stopped Copaxone last year. I hated the daily shots > > & found myself not wanting to even comply. I didn't > > notice any improvement at all anyway. In fact I > > feel > > much better being off of it. My insurance stopped > > when > > I quit my job last year. Now I'm on my husband's > > insurance. They will only cover a tiny bit & my > > part > > would be $700 a month. The prescription assistance > > programs don't help me because I do have some sort > > of > > insurance. So now I just take vitamin supplements to > > help with the fatigue & I haven't had any major > > flares > > this year. I had been having one every year & had > > to > > do Solumedrol treatments. They were mainly for > > optic > > neuritis. > > E. > > Colorado > > > > --- Sharon Marsden wrote: > > > > > When did you stop all CRAB drugs? Just wondering > > if > > > it's been long enough for results to show on an > > MRI. > > > I felt so good when I stopped Avonex and it > > lasted > > > for a good while. But my symptoms have gotten > > so > > > much worse in the last year. I sure do regret my > > > decision to stop Avonex. I fear that I may have > > > wrecked my life by that decision. > > > > > > I sincerely hope you continue to do well, Akiba. > > > > > > Sharon > > > > > > > > > > > > " Insanity runs in my family. It practically > > gallops. " > > Cary Grant > > > > __________________________________________________ > > Do You Yahoo!? > > Tired of spam? Yahoo! Mail has the best spam > > protection around > > http://mail.yahoo.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 http://www.lowdosenaltrexone.org/index.htm How does LDN (Low Dose Naltrexone) work? For MS and all Other Autoimmine Diseases....... > LDN boosts the immune system, activating the body's own natural defenses. Up to the present time, the question of "What controls the immune system?" has not been present in the curricula of medical colleges and the issue has not formed a part of the received wisdom of practicing physicians. Nonetheless, a body of research over the past two decades has pointed repeatedly to one's own endorphin secretions (our internal opioids) as playing the central role in the beneficial orchestration of the immune system, and recognition of the facts is growing. Witness these statements from a review article of medical progress in the November 13, 2003 issue of the prestigious New England Journal of Medicine: "Opioid-Induced Immune Modulation: .... Preclinical evidence indicates overwhelmingly that opioids alter the development, differentiation, and function of immune cells, and that both innate and adaptive systems are affected.1,2 Bone marrow progenitor cells, macrophages, natural killer cells, immature thymocytes and T cells, and B cells are all involved. The relatively recent identification of opioid-related receptors on immune cells makes it even more likely that opioids have direct effects on the immune system.3" The brief blockade of opioid receptors between 2 a.m. and 4 a.m. that is caused by taking LDN at bedtime each night is believed to produce a prolonged up-regulation of vital elements of the immune system by causing an increase in endorphin and enkephalin production. Normal volunteers who have taken LDN in this fashion have been found to have much higher levels of beta-endorphins circulating in their blood in the following days. Animal research by I. Zagon, PhD, and his colleagues has shown a marked increase in metenkephalin levels as well. [Note: Additional information for Dr. Zagon can be found at the end of this page.] Bihari says that his patients with HIV/AIDS who regularly took LDN before the availability of HAART were generally spared any deterioration of their important helper T cells (CD4+). In human cancer, research by Zagon over many years has demonstrated inhibition of a number of different human tumors in laboratory studies by using endorphins and low dose naltrexone. It is suggested that the increased endorphin and enkephalin levels, induced by LDN, work directly on the tumors' opioid receptors — and, perhaps, induce cancer cell death (apoptosis). In addition, it is believed that they act to increase natural killer cells and other healthy immune defenses against cancer. In general, in people with diseases that are partially or largely triggered by a deficiency of endorphins (including cancer and autoimmune diseases), or are accelerated by a deficiency of endorphins (such as HIV/AIDS), restoration of the body's normal production of endorphins is the major therapeutic action of LDN. What diseases has it been useful for and how effective is it? > Bernard Bihari, MD, as well as other physicians and researchers, have described beneficial effects of LDN on a variety of diseases: Cancers: Other Diseases: Bladder Cancer Breast Cancer Carcinoid Colon & Rectal Cancer Glioblastoma Liver Cancer Lung Cancer (Non-Small Cell) Lymphocytic Leukemia (chronic) Lymphoma (Hodgkin's and Non-Hodgkin's) Malignant Melanoma Multiple Myeloma Neuroblastoma Ovarian Cancer Pancreatic Cancer Prostate Cancer (untreated) Renal Cell Carcinoma Throat Cancer Uterine Cancer ALS (Lou Gehrig's Disease) Alzheimer's Disease Autism Spectrum Disorders Behcet's Disease Celiac Disease Chronic Fatigue Syndrome Crohn's Disease Emphysema (COPD) Endometriosis Fibromyalgia HIV/AIDS Irritable Bowel Syndrome (IBS) Multiple Sclerosis (MS) Parkinson's Disease Pemphigoid Primary Lateral Sclerosis (PLS) Psoriasis Rheumatoid Arthritis Sarcoidosis Systemic Lupus (SLE) Transverse Myelitis Ulcerative Colitis Wegener's Granulomatosis mindythores wrote: Be careful when stopping your CRAB drugs. I was on Avonex for nearly five years and then stopped for four years. Because I didn't have many sypmtoms, I assumed my vitamins and supplement were doing the trick. But an MRI showed my MS was fairly active, especially in the cognitive regions of my brain. After a new attack and updated MRI, my neuro begged me to go back on Avonex. I hate the initial side effects but I did and now I regret going off as I've experienced brain atrophy (shrinkage of 20% in my corpus collustrum). The problem with saying some people have done well on supplements and changing their diet, etc is that not everyone's MS is the same. Your MS could be active and you don't know it or fate could determine that your MS would remain quiet for a while or possibly never return. Find a CRAB drug that works for you and continue taking your supplements (I think B12 is great for fatigue)and watch your nutrition. Fight this disease on every battle front.Just my thoughts.Mindy> > > :> > Thank you. I am going to go to Wild Oats and try this out. I have heard > from others that vitamin supplements are very good for us (with MS). A friend > of a friend of mine has used vitamin supplements for years for his MS and is > doing great. > Thanks, again, . winnie> > > > > > Rhodiola Rosea. I bought mine at Wild Oats Market. I> also take B12.> E.> Colorado> > --- Parpack6@... wrote:> > > > > Mellissa:> > > > What type of Vitamin supplements do you take? > > thanks, winnie> > > > > > > > > > > > stopped Copaxone last year. I hated the daily shots> > & found myself not wanting to even comply. I didn't> > notice any improvement at all anyway. In fact I > > feel> > much better being off of it. My insurance stopped> > when> > I quit my job last year. Now I'm on my husband's> > insurance. They will only cover a tiny bit & my> > part> > would be $700 a month. The prescription assistance> > programs don't help me because I do have some sort > > of> > insurance. So now I just take vitamin supplements to> > help with the fatigue & I haven't had any major> > flares> > this year. I had been having one every year & had> > to> > do Solumedrol treatments. They were mainly for > > optic> > neuritis. > > E.> > Colorado> > > > --- Sharon Marsden wrote:> > > > > When did you stop all CRAB drugs? Just wondering> > if> > > it's been long enough for results to show on an> > MRI.> > > I felt so good when I stopped Avonex and it > > lasted> > > for a good while. But my symptoms have gotten > > so> > > much worse in the last year. I sure do regret my> > > decision to stop Avonex. I fear that I may have> > > wrecked my life by that decision.> > > > > > I sincerely hope you continue to do well, Akiba.> > > > > > Sharon> > > > > > > > > > > > "Insanity runs in my family. It practically> > gallops."> > Cary Grant> > > > __________________________________________________> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 Your welcome. I am always reluctant to post anything about what I take because a lot of people are very opposed to that sort of thing. I have found that the majority of people think that the CRAB drugs are the only way to go & if you don't then you are irresponsible. I hope they help you as much as they helped me. E. Colorado --- Parpack6@... wrote: > > > : > > Thank you. I am going to go to Wild Oats and try > this out. I have heard > from others that vitamin supplements are very good > for us (with MS). A friend > of a friend of mine has used vitamin supplements > for years for his MS and is > doing great. > Thanks, again, . winnie > > > > In a message dated 7/2/2006 1:30:30 A.M. Eastern > Daylight Time, > lissa252000@... writes: > > Rhodiola Rosea. I bought mine at Wild Oats Market. > I > also take B12. > E. > Colorado > > --- Parpack6@... wrote: > > > > > Mellissa: > > > > What type of Vitamin supplements do you take? > > thanks, winnie > > > > > > > > In a message dated 7/1/2006 1:49:49 P.M. Eastern > > Daylight Time, > > lissa252000@... writes: > > > > stopped Copaxone last year. I hated the daily > shots > > & found myself not wanting to even comply. I > didn't > > notice any improvement at all anyway. In fact I > > feel > > much better being off of it. My insurance stopped > > when > > I quit my job last year. Now I'm on my husband's > > insurance. They will only cover a tiny bit & my > > part > > would be $700 a month. The prescription > assistance > > programs don't help me because I do have some > sort > > of > > insurance. So now I just take vitamin supplements > to > > help with the fatigue & I haven't had any major > > flares > > this year. I had been having one every year & > had > > to > > do Solumedrol treatments. They were mainly for > > optic > > neuritis. > > E. > > Colorado > > > > --- Sharon Marsden > wrote: > > > > > When did you stop all CRAB drugs? Just > wondering > > if > > > it's been long enough for results to show on > an > > MRI. > > > I felt so good when I stopped Avonex and it > > lasted > > > for a good while. But my symptoms have gotten > > > so > > > much worse in the last year. I sure do regret > my > > > decision to stop Avonex. I fear that I may > have > > > wrecked my life by that decision. > > > > > > I sincerely hope you continue to do well, > Akiba. > > > > > > Sharon > > > > > > > > > > > > " Insanity runs in my family. It practically > > gallops. " > > Cary Grant > > > > > __________________________________________________ > > Do You Yahoo!? > > Tired of spam? Yahoo! Mail has the best spam > > protection around > > http://mail.yahoo.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 I take it too, only recently started but yeah, I take it! Peace and Blessings ~*~ Akiba ~*~ Pragmatic Visionary http://yodamamma.blogspot.com/ http://www.solay-twinflames.com -- Re: stopping med?/ Your welcome. I am always reluctant to post anythingabout what I take because a lot of people are veryopposed to that sort of thing. I have found that themajority of people think that the CRAB drugs are theonly way to go & if you don't then you areirresponsible. I hope they help you as much as theyhelped me. E.Colorado--- Parpack6aol wrote:> > > :> > Thank you. I am going to go to Wild Oats and try> this out. I have heard > from others that vitamin supplements are very good> for us (with MS). A friend > of a friend of mine has used vitamin supplements > for years for his MS and is > doing great. > Thanks, again, . winnie> > > > In a message dated 7/2/2006 1:30:30 A.M. Eastern> Daylight Time, > lissa252000 writes:> > Rhodiola Rosea. I bought mine at Wild Oats Market.> I> also take B12.> E.> Colorado> > --- Parpack6aol wrote:> > > > > Mellissa:> > > > What type of Vitamin supplements do you take? > > thanks, winnie> > > > > > > > In a message dated 7/1/2006 1:49:49 P.M. Eastern> > Daylight Time, > > lissa252000 writes:> > > > stopped Copaxone last year. I hated the daily > shots> > & found myself not wanting to even comply. I > didn't> > notice any improvement at all anyway. In fact I > > feel> > much better being off of it. My insurance stopped> > when> > I quit my job last year. Now I'm on my husband's> > insurance. They will only cover a tiny bit & my> > part> > would be $700 a month. The prescription > assistance> > programs don't help me because I do have some> sort > > of> > insurance. So now I just take vitamin supplements> to> > help with the fatigue & I haven't had any major> > flares> > this year. I had been having one every year & > had> > to> > do Solumedrol treatments. They were mainly for > > optic> > neuritis. > > E.> > Colorado> > > > --- Sharon Marsden <wobbletowalk>> wrote:> > > > > When did you stop all CRAB drugs? Just> wondering> > if> > > it's been long enough for results to show on> an> > MRI.> > > I felt so good when I stopped Avonex and it > > lasted> > > for a good while. But my symptoms have gotten> > > so> > > much worse in the last year. I sure do regret> my> > > decision to stop Avonex. I fear that I may> have> > > wrecked my life by that decision.> > > > > > I sincerely hope you continue to do well,> Akiba.> > > > > > Sharon> > > > > > > > > > > > "Insanity runs in my family. It practically> > gallops."> > Cary Grant> > > > > __________________________________________________> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 Winnie, have you thought about another CRAB drug like Rebif? I am thrilled with the lack of side effects. Connie From: MSersLife [mailto:MSersLife ] On Behalf Of Parpack6@... Sent: Sunday, July 02, 2006 12:20 PM To: MSersLife Subject: Re: Re: stopping med?/ Mindy: Thank you very much for the informative post. I was just talking to my husband, and he told me he has noticed a regression since I have been off the Beta. He practically begged me to go back on. I am going to go see my neuro, (I'm a little embarrassed because I haven't been to see him since stopping the drug) ASAP, and get back on it. My husband just said to me that he wants me to do as well as possible for as long as possible, and he saw no regression while I was on the Beta. Plus the fact that MS is so mysterious, generally, and we have to do what my neuro tells me to do because we totally trust him. He is a really good guy. Again, Mindy, thank you. winnie In a message dated 7/2/2006 11:38:51 A.M. Eastern Daylight Time, crystalangel6771@... writes: Be careful when stopping your CRAB drugs. I was on Avonex for nearly five years and then stopped for four years. Because I didn't have many sypmtoms, I assumed my vitamins and supplement were doing the trick. But an MRI showed my MS was fairly active, especially in the cognitive regions of my brain. After a new attack and updated MRI, my neuro begged me to go back on Avonex. I hate the initial side effects but I did and now I regret going off as I've experienced brain atrophy (shrinkage of 20% in my corpus collustrum). The problem with saying some people have done well on supplements and changing their diet, etc is that not everyone's MS is the same. Your MS could be active and you don't know it or fate could determine that your MS would remain quiet for a while or possibly never return. Find a CRAB drug that works for you and continue taking your supplements (I think B12 is great for fatigue)and watch your nutrition. Fight this disease on every battle front. Just my thoughts. Mindy > > > : > > Thank you. I am going to go to Wild Oats and try this out. I have heard > from others that vitamin supplements are very good for us (with MS). A friend > of a friend of mine has used vitamin supplements for years for his MS and is > doing great. > Thanks, again, . winnie > > > > In a message dated 7/2/2006 1:30:30 A.M. Eastern Daylight Time, > lissa252000@... writes: > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 Excellent contribution to this discussion Mindy. Thank you! Just as people are different, their course of disease can be different. A person may seem fine on the outside but damage can be happening on the inside, as you and I have learned the hard way. I agree with you. Take supplements! And I do. But I don't believe supplements alone are going to take care of this insidious disease. I know my vitamins make me feel better but I don't want to risk the rest of my life and my well being on supplements alone. How long have you been back on Avonex? Sharon (MSersLife creator/owner) Keep true to the dreams of thy youth. (Albert Einstein) Re: stopping med?/ Be careful when stopping your CRAB drugs. I was on Avonex for nearly five years and then stopped for four years. Because I didn't have many sypmtoms, I assumed my vitamins and supplement were doing the trick. But an MRI showed my MS was fairly active, especially in the cognitive regions of my brain. After a new attack and updated MRI, my neuro begged me to go back on Avonex. I hate the initial side effects but I did and now I regret going off as I've experienced brain atrophy (shrinkage of 20% in my corpus collustrum). The problem with saying some people have done well on supplements and changing their diet, etc is that not everyone's MS is the same. Your MS could be active and you don't know it or fate could determine that your MS would remain quiet for a while or possibly never return. Find a CRAB drug that works for you and continue taking your supplements (I think B12 is great for fatigue)and watch your nutrition. Fight this disease on every battle front.Just my thoughts.Mindy> > > :> > Thank you. I am going to go to Wild Oats and try this out. I have heard > from others that vitamin supplements are very good for us (with MS). A friend > of a friend of mine has used vitamin supplements for years for his MS and is > doing great. > Thanks, again, . winnie> > > > In a message dated 7/2/2006 1:30:30 A.M. Eastern Daylight Time, > lissa252000@ ... writes:> > Rhodiola Rosea. I bought mine at Wild Oats Market. I> also take B12.> E.> Colorado> > --- Parpack6@... wrote:> > > > > Mellissa:> > > > What type of Vitamin supplements do you take? > > thanks, winnie> > > > > > > > In a message dated 7/1/2006 1:49:49 P.M. Eastern> > Daylight Time, > > lissa252000@ ... writes:> > > > stopped Copaxone last year. I hated the daily shots> > & found myself not wanting to even comply. I didn't> > notice any improvement at all anyway. In fact I > > feel> > much better being off of it. My insurance stopped> > when> > I quit my job last year. Now I'm on my husband's> > insurance. They will only cover a tiny bit & my> > part> > would be $700 a month. The prescription assistance> > programs don't help me because I do have some sort > > of> > insurance. So now I just take vitamin supplements to> > help with the fatigue & I haven't had any major> > flares> > this year. I had been having one every year & had> > to> > do Solumedrol treatments. They were mainly for > > optic> > neuritis. > > E.> > Colorado> > > > --- Sharon Marsden <wobbletowalk@ ...> wrote:> > > > > When did you stop all CRAB drugs? Just wondering> > if> > > it's been long enough for results to show on an> > MRI.> > > I felt so good when I stopped Avonex and it > > lasted> > > for a good while. But my symptoms have gotten > > so> > > much worse in the last year. I sure do regret my> > > decision to stop Avonex. I fear that I may have> > > wrecked my life by that decision.> > > > > > I sincerely hope you continue to do well, Akiba.> > > > > > Sharon> > > > > > > > > > > > "Insanity runs in my family. It practically> > gallops."> > Cary Grant> > > > ____________ _________ _________ _________ _________ __> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 Please don't feel you can't share what works for you. I have strong feelings about my supplements because I know they make me feel better. But for me I don't want to put all my eggs in one basket, so to speak. So I will use supplements but I will also use meds. Sharon (MSersLife creator/owner) Keep true to the dreams of thy youth. (Albert Einstein) Re: stopping med?/ Your welcome. I am always reluctant to post anythingabout what I take because a lot of people are veryopposed to that sort of thing. I have found that themajority of people think that the CRAB drugs are theonly way to go & if you don't then you areirresponsible. I hope they help you as much as theyhelped me. E.Colorado--- Parpack6aol (DOT) com wrote:> > > :> > Thank you. I am going to go to Wild Oats and try> this out. I have heard > from others that vitamin supplements are very good> for us (with MS). A friend > of a friend of mine has used vitamin supplements > for years for his MS and is > doing great. > Thanks, again, . winnie> > > > In a message dated 7/2/2006 1:30:30 A.M. Eastern> Daylight Time, > lissa252000@ yahoo.com writes:> > Rhodiola Rosea. I bought mine at Wild Oats Market.> I> also take B12.> E.> Colorado> > --- Parpack6aol (DOT) com wrote:> > > > > Mellissa:> > > > What type of Vitamin supplements do you take? > > thanks, winnie> > > > > > > > In a message dated 7/1/2006 1:49:49 P.M. Eastern> > Daylight Time, > > lissa252000@ yahoo.com writes:> > > > stopped Copaxone last year. I hated the daily > shots> > & found myself not wanting to even comply. I > didn't> > notice any improvement at all anyway. In fact I > > feel> > much better being off of it. My insurance stopped> > when> > I quit my job last year. Now I'm on my husband's> > insurance. They will only cover a tiny bit & my> > part> > would be $700 a month. The prescription > assistance> > programs don't help me because I do have some> sort > > of> > insurance. So now I just take vitamin supplements> to> > help with the fatigue & I haven't had any major> > flares> > this year. I had been having one every year & > had> > to> > do Solumedrol treatments. They were mainly for > > optic> > neuritis. > > E.> > Colorado> > > > --- Sharon Marsden <wobbletowalk@ yahoo.com>> wrote:> > > > > When did you stop all CRAB drugs? Just> wondering> > if> > > it's been long enough for results to show on> an> > MRI.> > > I felt so good when I stopped Avonex and it > > lasted> > > for a good while. But my symptoms have gotten> > > so> > > much worse in the last year. I sure do regret> my> > > decision to stop Avonex. I fear that I may> have> > > wrecked my life by that decision.> > > > > > I sincerely hope you continue to do well,> Akiba.> > > > > > Sharon> > > > > > > > > > > > "Insanity runs in my family. It practically> > gallops."> > Cary Grant> > > > > ____________ _________ _________ _________ _________ __> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 I've been back on the Avonex for about 1.5 years. The first six month's is HELL but I've adjusted and now I only have a reaction like every third shot and it's nowhere near as bad as the first six months. I kinda wanted to try something different this time but both my neuro and the other neuro in town believe in Avonex. Something about immunity problems with the others???? Don't really understand the gobbldegook. But I take lots of supplements...b12, omega oils, mineral supplements, cranberry, ginko, daily vit, and I even chew an extra vit c tab every day. Many of my vitamins are in liquid form. I really believe in the absorbtion issue. I, also, started the SWANK diet and while haven't stuck to it religiously, I haven't eaten any red meats in four months. Not sure if it's " fixed " my MS but I've lost 28lbs (without excercise) and the whole " low-fat " thing has controlled my irritable bowel syndrome. So...I do believe in nutrition, supplements and the meds! Mindy > > > > > > > When did you stop all CRAB drugs? Just wondering > > > if > > > > it's been long enough for results to show on an > > > MRI. > > > > I felt so good when I stopped Avonex and it > > > lasted > > > > for a good while. But my symptoms have gotten > > > so > > > > much worse in the last year. I sure do regret my > > > > decision to stop Avonex. I fear that I may have > > > > wrecked my life by that decision. > > > > > > > > I sincerely hope you continue to do well, Akiba. > > > > > > > > Sharon > > > > > > > > > > > > > > > > > " Insanity runs in my family. It practically > > > gallops. " > > > Cary Grant > > > > > > ____________ _________ _________ _________ _________ __ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 Ok, here it goes. I seldom comment on the injection meds because I do not want to worry others just because I am one of the few who cannot take them. I am allergic. I did not know this until about 4 months after I quit taking them. I was asking questions and not getting answers so I did a trial of quitting for 2 weeks and then went back on for a month. I felt so much better during the 2 weeks off that I just quit. I did call the neuro's office and told his nurse. at my next appointment I was talking to him and he ask to see the injection sites. and he said that I was having an allergic reaction I still have sites that are weird looking. I have a long list of supplements that I take although I am presently doing some modifcation. HAPPINESS and BUTTERFLIES Lynn Re: stopping med?/> > > > Your welcome. I am always reluctant to post anything> about what I take because a lot of people are very> opposed to that sort of thing. I have found that the> majority of people think that the CRAB drugs are the> only way to go & if you don't then you are> irresponsible. I hope they help you as much as they> helped me.> E.> Colorado> > --- Parpack6aol (DOT) com wrote:> > > > > > > :> > > > Thank you. I am going to go to Wild Oats and try> > this out. I have heard > > from others that vitamin supplements are very good> > for us (with MS). A friend > > of a friend of mine has used vitamin supplements > > for years for his MS and is > > doing great. > > Thanks, again, . winnie> > > > > > > > In a message dated 7/2/2006 1:30:30 A.M. Eastern> > Daylight Time, > > lissa252000@ yahoo.com writes:> > > > Rhodiola Rosea. I bought mine at Wild Oats Market.> > I> > also take B12.> > E.> > Colorado> > > > --- Parpack6aol (DOT) com wrote:> > > > > > > > Mellissa:> > > > > > What type of Vitamin supplements do you take? > > > thanks, winnie> > > > > > > > > > > > In a message dated 7/1/2006 1:49:49 P.M. Eastern> > > Daylight Time, > > > lissa252000@ yahoo.com writes:> > > > > > stopped Copaxone last year. I hated the daily > > shots> > > & found myself not wanting to even comply. I > > didn't> > > notice any improvement at all anyway. In fact I > > > feel> > > much better being off of it. My insurance stopped> > > when> > > I quit my job last year. Now I'm on my husband's> > > insurance. They will only cover a tiny bit & my> > > part> > > would be $700 a month. The prescription > > assistance> > > programs don't help me because I do have some> > sort > > > of> > > insurance. So now I just take vitamin supplements> > to> > > help with the fatigue & I haven't had any major> > > flares> > > this year. I had been having one every year & > > had> > > to> > > do Solumedrol treatments. They were mainly for > > > optic> > > neuritis. > > > E.> > > Colorado> > > > > > --- Sharon Marsden <wobbletowalk@ yahoo.com>> > wrote:> > > > > > > When did you stop all CRAB drugs? Just> > wondering> > > if> > > > it's been long enough for results to show on> > an> > > MRI.> > > > I felt so good when I stopped Avonex and it > > > lasted> > > > for a good while. But my symptoms have gotten> > > > > so> > > > much worse in the last year. I sure do regret> > my> > > > decision to stop Avonex. I fear that I may> > have> > > > wrecked my life by that decision.> > > > > > > > I sincerely hope you continue to do well,> > Akiba.> > > > > > > > Sharon> > > > > > > > > > > > > > > > > "Insanity runs in my family. It practically> > > gallops."> > > Cary Grant> > > > > > > > ____________ _________ _________ _________ _________ __> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 Wow! lyn! Glad you found out though! Shirlshappybutterflies@... wrote: Ok, here it goes. I seldom comment on the injection meds because I do not want to worry others just because I am one of the few who cannot take them. I am allergic. I did not know this until about 4 months after I quit taking them. I was asking questions and not getting answers so I did a trial of quitting for 2 weeks and then went back on for a month. I felt so much better during the 2 weeks off that I just quit. I did call the neuro's office and told his nurse. at my next appointment I was talking to him and he ask to see the injection sites. and he said that I was having an allergic reaction I still have sites that are weird looking. I have a long list of supplements that I take although I am presently doing some modifcation. HAPPINESS and BUTTERFLIES Lynn Re: stopping med?/> > > > Your welcome. I am always reluctant to post anything> about what I take because a lot of people are very> opposed to that sort of thing. I have found that the> majority of people think that the CRAB drugs are the> only way to go & if you don't then you are> irresponsible. I hope they help you as much as they> helped me.> E.> Colorado> > --- Parpack6aol (DOT) com wrote:> > > > > > > :> > > > Thank you. I am going to go to Wild Oats and try> > this out. I have heard > > from others that vitamin supplements are very good> > for us (with MS). A friend > > of a friend of mine has used vitamin supplements > > for years for his MS and is > > doing great. > > Thanks, again, . winnie> > > > > > > > In a message dated 7/2/2006 1:30:30 A.M. Eastern> > Daylight Time, > > lissa252! 000@ yah oo.com writes:> > > > Rhodiola Rosea. I bought mine at Wild Oats Market.> > I> > also take B12.> > E.> > Colorado> > > > --- Parpack6aol (DOT) com wrote:> > > > > > > > Mellissa:> > > > > > What type of Vitamin supplements do you take? > > > thanks, winnie> > > > > > > > > > > > In a message dated 7/1/2006 1:49:49 P.M. Eastern> > > Daylight Time, > > > lissa252000@ yahoo.com writes:> > > > > > stopped Copaxone last year. I hated the daily > > shots> > > & found myself not wanting to even comply. I > > didn't> > > notice any improvement at all anyway. In fact I > > > feel> > > much better being off of it. My insurance stopped> > > when> > > I quit my job last year. Now I'm on my husband's> > > insurance. They will only cover a tiny bit & my> > > part> > > would be $700 a month. The prescription > > assistance> > > programs don't help me because I do have some> > sort > > > of> > > insurance. So now I just take vitamin supplements> > to> > > help with the fatigue & I haven't had any major> > > flares> > > this year. I had been having one every year & > > had> > > to> > > do Solumedrol treatments. They were mainly for > > > optic> > > neuritis. > > > E.> > > Colorado> > > > > > --- Sharon Marsden <wobbletowalk@ yahoo.com>> > wrote:> > > > > > > When did you stop all CRAB drugs? Just> > wondering> > > if & ! gt; > > > it's been long enough for results to show on> > an> > > MRI.> > > > I felt so good when I stopped Avonex and it > > > lasted> > > > for a good while. But my symptoms have gotten> > > > > so> > > > much worse in the last year. I sure do regret> > my> > > > decision to stop Avonex. I fear that I may> > have> > > > wrecked my life by that decision.> > > > > > > > I sincerely hope you continue to do well,> > Akiba.> > > > > > > > Sharon> > > > > > > > > > > > > > > > > "Insanity runs in my family. It practically> > > gallops."> > > Cary Grant> > > > > > > > ____________ _________ _________ _________ _________ __> > > Quote Link to comment Share on other sites More sharing options...
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