ms rebel blog

Disclaimer: The information contained on this website is compiled of information on alternative treatments that I have used since my MS symptoms began in 1975. Some have helped my MS quite a bit, that does not mean that they will help yours. They are mostly anecdotal evidence and you should seek the counsel of your physician before starting any new treatments.

November

11-07-08 I have had a bad experience this week but it has taught me a lot, I really need to listen to my body and be diligent with exercise. I have been pretty good with the exercise as of late and am so glad, it really helped on voting day, which was a good and bad day. The voting experience was great, I walked with my cane into the polling area with the help of my wonderful son. He also helped so much later in the day when I made a very bad decision and pushed the walking too much and soiled myself, yee ha! If you want the gory details you will find them on the my symptoms page. I will always believe that diet is the key to curing symptoms especially if you are early on. It just seems way too coincidental that the MS patients who claim cure through diet alone all used the same principals of eating anti-inflammatory foods. It does not happen overnight, patience is a must! I say it all the time, don't believe me, check into it for yourself. See if your doctor might believe this could be a good thing to try. My GP does! I am noticing my legs feel very strong today, I have not used my cane yet today, but I need to not over due it or I'll be sorry. For me the MS has mostly effected my brain so I added doing easy crossword puzzles and easy Sudoku puzzles, I feel that is helping as well, the brain needs just as much exercise. Never give up! ~ Lisa

11-02-08 Stress is still of course playing a huge role in why I am back to using steroids. I have such a love-hate relationship with steroids. I know I am so fortunate that they have always helped get rid of the inflammation since my first experience with a 6 day ACTH IV treatment in 1984. I hate the bloating, I feel like a whale right now a bit depressing, but it will go away in time. I am just determined to go with my wonderful son to our polling place to vote in this historic election on Tuesday. Thanks to the prednisone I am walking around within the house with my cane, but I must not over due it! I wish I still had the funding to continue using the SF1019 vaccine, I felt stronger especially my legs and my mind seemed more clear when I was using. To a certain degree I wish I never tried the vaccine because now I know how much better it works than these bloating steroids. When I was using the vaccine I was actually able to do laps within the house, I felt so strong now I just feel bloated without the energy I felt while using the vaccine. I imagine with that comment some of you would like to smack me right upside the head. Believe me, I know how fortunate I have been, it's just been 33 years of frustration. However, thanks again to my brother Brian and friends they have raised some money to help with my having all 9 of my amalgam fillings removed, hopefully in the next couple months. I also believe those toxic fillings are a huge problem, I will be so excited to have that poison removed from my teeth. Since insomnia is by far my worst symptom, I did some online research and found a couple bits of anecdotal evidence that by replacing the fillings with a non-toxic material had cured some people of their chronic insomnia, I literally cannot fall to sleep at all unless I take Xanax. Again, only one way to find out, so I guess I'll find out once that poison is removed from my body. I will also NEVER go back to eating glutinous foods again now that I have experienced how that has helped with some of my symptoms. My scalp psoriasis (another auto immune disease) has been the most noticeable change, it is barely visible and the itching has virtually gone away. It seems certain to me that it will still be a long time before physicians, especially neurologists will be able to some conclusion on what actually causes MS. I think it will take yet more studies. My mom and 2 brothers have amalgam fillings but they do not have MS, so ??? Soon enough I guess I'll find out what if any role amalgams have played. I am presently using a chelation therapy and have had a hair analysis done this past July, I will have another hair analysis to compare after my fillings have been removed. If interested I have that info on this page;

my toxic teeth. Recovering from this disease has been a very long royal P.I.T.A. but I have come this far ... I will never quit until I have exhausted everything I can try. I hope you will do the same. MS does not have to be a fatal disease, chemo does not work, MS is not cancer! Never give up! ~ Lisa

October

10-24-08 This disease can be perplexing, physicians can't agree on what MS actually is. Autoimmune disease? Food allergies? Mycoplasma? I'd say by definition MS is an autoimmune disease. I personally believe from my own experience that diet is the key. My most trusted Neurologist always told me that diet has nothing to do with MS. Since I have eliminated these Inflammatory foods from my diet some of my symptoms are going away. This has been quite difficult giving up many of the junk foods I used to eat, fast foods and such. This new way of eating is forever, my friend Scot died about 10 years ago that is also forever. I looked into the Mycoplasma theory by drinking Colloidal Silver, it did not turn me blue, it was more like grayish, I will never use it again or suggest it to other patients. I am currently using chelation therapy to try to rid my body of the silver. To each his own. I also have 9 amalgam fillings in my teeth and will be starting the process of having those toxic fillings replaced, during that time I will be diligent in using the chelation therapy. I use Chelorex I also had a hair analysis done so I can compare the results once I have my fillings replaced. I'm hoping to have them replaced in the next month or so, I'm rather certain I will see even more improvements in my symptoms. My absolute worst symptom is chronic insomnia, I will lay in bed all night and never fall asleep. It started around '98 and continued to get worse and around '05 I had my first and thankfully last hallucination from being awake for so long. I called my GP the next morning and asked him to call in a prescription for Xanax, he did and I've been sleeping pretty good since. I'm hoping that by replacing my fillings that maybe the insomnia will go away. I hope so, but I have another theory which I will not be able to prove because I have no insurance. My last MRI was in 2000, all the lesions were in my brain no cervical spine lesions. My theory is over these past 8 years I may now have a lesion in my brain stem. I found some articles online below is part of one.

"Another finding in the early years of this century was that injury to the base of the brain, at a region called the preoptic area, could produce long-lasting insomnia. Recent studies have identified nerve cells in this area of the brain that are specifically active during sleep. In other words, not only is waking an active state, but sleep also requires activity of special nerve cells to maintain a state of sleep.

In our laboratory we set out to learn precisely how this activity serves sleep, by examining the connections of sleep-active nerve cells in the preoptic area. We found that these cells send their axons to the monamine and acetycholine neurons in the brainstem and the nerve terminals wrap around and encrust the nerve cells in the arousal system. Significantly, the sleep-active nerve cells in the preoptic area contain GABA, an inhibitory neurotransmitter which turns down, or dampens, the firing of other cells. When the sleep-active neurons are firing, we believe that they profoundly inhibit the arousal systems of the brain, and "turn off the lights."

Of course I know I'm not a doctor but I can read and I keep finding information like the one above. Since I have no insurance and cannot get another MRI to prove my theory I will stubbornly keep trying alternative treatments like L-dopa which I have not received yet. It is really used for Parkinson's and RLS, I do have the latter. If after the removal of my amalgams I continue to suffer the chronic insomnia I will look to having stem cell treatment from Dr. Frank Morales. He is the doctor who got me started with the SF1019 vaccine, I trust him very much! Hopefully it won't come to that, but I guess only time will tell. Don't trust what I say, be proactive and check out the info on my website for yourself, that's what have always done.

Never give up, I'm seeing a light at the end of the tunnel! Be well - Lisa

0-17-08 I truly believe that this new SF1019 (Immunosyn vaccine) works better than any injection type treatment I have ever used (you know which ones I'm talking about). I pray Immunosyn (SF1019) will be FDA approved very soon. My last injection was June 24th and I have slowly been feeling my body reverting back to the need for prednisone as my legs have weakened, my energy level is also depleting, I had a lot more energy when was using the vaccine. I can still walk with my cane, I just need to use my wheelchair a bit more now especially at night since my balance is very bad. I was hoping to be able to go for very short little walks with my dog Daisey by now, but maybe in the Spring.? The economy has played a huge role in the ability for the family members that were helping with the payment for the vaccine. I am now only using the dietary changes, which from what I've read takes around 4 -5 years to work. I have been strict with the dietary changes for about 1 year. I was hoping that by using both diet and vaccine together that maybe that time frame might be cut down some. ? Oh well, I do believe diet can also make a big difference along with trying to remain as stress free as possible, since stress also causes inflammation. Stress has been quite difficult to avoid, so I'll do my best and keep up with staying away from those inflammatory foods and try to rest frequently.

I'll never give up! ~ Lisa

This time in between was computer crash time, that's why I did not update last week :(

10-03-08 I am keeping my theme of the necessity of MS patient's changing their diets to eating anti-inflammatory foods. From what I am hearing from many MS patients, the belief of diet making any lasting change in symptoms is not believed by the majority of MS patients. I personally never believed it either, after all my own Neurologist said diet would make no difference so why would I even consider it? I'm going into my 33rd year of this disease my friend Scot called "sucky disease". His nickname for MS was correct, he also ate many glutinous foods and died 10 years ago. The sister of the man who sings the National Anthem at our Turkey Bowl for MS yearly event also passed away in '06. In my opinion this disease is not fatal, it has been proven so by those MS patients who have written of their experiences with eating a diet of anti-inflammatory foods. Maybe more patients would be convinced to give it a serious try if there were medical studies done my Neurologists on this subject.? I will do a poll on that this weekend about that subject. At some point soon, I will get in contact with my most trusted Neurologist, Dr. Myron Glassenberg. He was the only Neurolgist who was completely honest with me, no BS. We always had a good rapport since I first went to him with major vertigo that required hospitalization for a week and ACTH IV back in 1984. I have been fortunate that my body would always respond to steroids. He even left his practice for 1 year back in 2000 to try his hand at research, luckily for me he was back to his practice in '01 unfortunately my insurance would be gone by '02 so I did not continue going to see him. I think he would probably be interested in my experiences with the vaccine and these dietary measures. Only one way to find out. I will pursue that more once I am able to use the vaccine again. In some ways I am worse than when I last saw him in 2002 and in some ways unchanged. My balance has been shot since '84 that has not changed for the better so much. My insomnia was just beginning around '00. He suggested a sleep study, which I did not do. I would like to get his opinion on my thoughts of possible brain stem lesions.? If I can get him to wave his fee, that would be very helpful, so we shall see. Some people have asked me if Argyll biotechnologies were the ones to suggested I add this diet of eating anti-inflammatory foods to the Immunosyn treatment. No, that is solely my thinking. I know inflammation is the enemy of multiple sclerosis! So I just thought since I was fortunate enough in using this anti-inflammatory vaccine why not add eating anti-inflammatory foods to the mix. Maybe my recovery would be quicker than through diet alone which appears t be 4-5 years, only one way to find out. It has been about 13 months using Immunosyn and about the same in changing to a strict diet of anti-inflammatory foods. No, I have not found this new way of eating very easy especially since I have to cook for myself. However, if this new way of eating in conjunction with using the Immunosyn vaccine can actually help me recover a bit quicker, I will do just that! Only time will tell, and I want to know! Be well ~ Lisa

September

09-19-08 I do from time to time get understandable emails about if I am for real for lack of a better term. I can understand why some people do not believe me, after all this is the internet, you don't know me from Adam. I never joke about MS but MS ticks me off. There is no reason a patient should die from this crappy disease especially since I am now seeing the affects of how diet is changing my symptoms. Granted the healing is at a snails pace, but I do believe the books I have read about inflammatory foods and how they wreak havoc on our bodies. Of course these patients you also likely don't know from Adam either, but there is information about inflammatory foods in the dictionary or encyclopedia that are fact. If you'd like to leave your opinion at my poll page, I currently am asking if you believe that eating anti-inflammatory foods only may help your MS symptoms and the other question is if you would be willing to change your diet if your Neurologist suggested it. The poll is set up through Polldaddy.com because I could not figure out how to set one up through FrontPage which is the program I use for my website. I'm so happy I have been able to figure out quite a bit so I can keep my website running, but the poll was over my head. It is set up so that a single computer can only vote once. I thought that would be a good idea so multiple votes can't happen to hopefully get a better idea of how my fellow MSers feel about that subject, just curious. Click here if you are interested. MS Polls. I thought I'd add this little tidbit about me because I have gotten emails telling me how some feel I must be "Miss self confident" to be able to have this website and try these dietary changes . Truth is, growing up I never felt self confident, I was one of the chubby girls that some of the boys & girls made fun of relentlessly since kindergarten. I'm still a bit on the chubby side. When I was 16 I decided to stop eating sugar and start walking 3 miles a day I ended up losing 40 pounds! Of course as this disease progressed and my ability to walk that far is gone, the weight has slowly been put right back on. It has gone down a few pounds since the dietary changes but I don't anticipate dropping any significant amount of weight without being able to walk more than a few feet. I'm not one to give up though, I just have to be patient. Cya! ~ Lisa

09-12-08 I will always know & believe that eating a diet of anti-inflammatory foods for MS patients' is the best bet especially if you are early on. Though sometimes inflammation wins especially if it is really hot or if you are under a lot of stress, which I presently am under, so I have had to go back to using a bit of prednisone for a while. My last Immunosyn injection was on June 24th. In my opinion the vaccine works so much better than steroids. There is no steroid bloat or insomnia from the steroids, it's just an injection with a very fine needle like what is used for insulin. I have used other treatments like B1 & liver extract where the needle has to go into the muscle, that is much worse. I do know of some people who are not too fond of any type of needles, fine or not. I have heard of people getting lasting help with that phobia by using EFT, it's an interesting link. If you have this phobia you may want to seriously look into that. You can even learn it for free by going to this doctor's site Dr. Joseph Mercola. I feel his visuals make it a bit easier to grasp. It is a 7 part EFT manual.

Thanks for stopping by. ~ Lisa

09-01-08 I have decided to make this Blog about how MS can be successfully treated through a diet of eating non inflammatory foods. For so many decades I have been fighting this theory in my head, telling myself "it just couldn't be that simple, surely my Neurologist would have suggested this". So I never tried it until now. I am so glad I did! I have a long way to go it appears from reading books on this subject it could take at least 4 years, it has been just one year for me so I have a long way to go. It feels so good to be getting the feeling back in my hands & feet. This is an incredibly "snails pace" treatment it will take tons of patience but is well worth it. My memory is getting better, my son has noticed that as well. I often walk within the house with no cane at all, but I can tell my leg muscles need to get stronger. The other thing I need to wrap my brain around is that now I can really push the envelope when it comes to exercise and stress. Before I started using this treatment when I over did it my body would rebel as usual and send me into an exacerbation where I would need to take prednisone. I'm stunned & delighted that for the amount of personal stress I've been under for the past year which would usually send me to needing steroids has not given me any symptoms. I do still have residual symptoms from my past exacerbations like lack of balance and numbness that is slowly getting better. I'm getting used to looking for subtle changes, often very subtle that will eventually become more apparent. Often I will have a "something is different" moment where I can't quite put my finger on what that something is, but eventually I will figure it out. A couple weeks ago I had that feeling and when my mom came over I started to put my finger on what was different. Usually when I'm sitting or standing I feel my body subtly swaying left to right, unsteady. That feeling I couldn't first put my finger on was that subtle swaying! It is not anywhere completely gone but it is different, my mom and son also noticed this. It seems so impossible that that will ever get better, who knows, maybe one day I will need cord blood stem cells to complete the process. However, first I will continue with the dietary changes and see how far that can take me. I know my mind will always come back to my friend Scot who died at such a young age, he ate quite a bit of Glutinous foods if only he knew back then that he could become well with diet change. You see this is why I stand on my soap box, so many MS patients especially the newbies could stop this disease from going any further. This is not a fatal disease! My big picture plan is to try to get my Neurologist & GP to have their MS patients try these dietary changes so they can see that this can help change the lives of MS patients. I do believe changing the minds of the medical community will be quite a challenge, this is not what they have been taught. I have just written and email to the AMA to inquire about the # of hours Neurologists are required concerning nutrition. I plan on doing my best to try to make sure MS patients are aware of these dietary changes, there is no reason we need to die from a non-fatal disease! ~ Lisa

August 08-08-08 I don't see myself writing a book of my own at this point, I guess I kind of think of this website as a type of "real-time" live book. I thought it might be useful to other MS patients who are looking into making these very necessary dietary changes and would like to see "a live experience". I'm so grateful to all the MS patients who shared their experiences with treating their MS with diet. After reading those books they really gave me knowledge into why dietary changes work. I know I am so fortunate to have been able to also use the Immunosyn vaccine. I have not had a vaccine injection since June 23rd. At this point I will only use the dietary means to continue the treatment of my MS. I'm just trying to see things logically. Since I am not using the vaccine anymore and only using the dietary means of eliminating foods that cause inflammation like sugar, cheese, wheat to name a few it appears to me that the dietary changes are working. I still have a long way to go but I am feeling so great! For me my worst symptom is insomnia, but as time goes on I am finding what works for me and what does not. I know I need to be very consistent with exercising, I hqave4 noticed when I consistently exercise I do feel more tired, naturally, I just have to really work on that! It is the dog days of summer, usually that means it's time to start the prednisone bloat....never again! I plan on sharing this information with my Neurologist by the end of this month. As with the other Neuro's I went to he never believed that dietary changes would make a difference. I first saw him in 1984 with a completely numb body and vertigo I went to him from the very beginning of my worst MS symptoms. He went along with me when I asked to try some odd alternative treatments we always had a good rapport. I guess I'll be testing that rapport when I go see him again, I'm hoping to see him one day this month. I often find it hard to believe that I actually feel this great, its very strange, but I sure like it! My ability to fall and stay asleep is still a problem, but when I am up to it and hold the cane in one hand and a broom in the other, and then vacuum the floor a bit I do feel more tired at night. That sure makes sense I remember the days when I worked full time and I could fall asleep rather easily. My biggest hope is that the newly diagnosed MS patient will seriously look into these dietary changes, it will change your future if it is given a chance. I am so excited that one day I will be able to take my dog Daisey for a walk, I never really believed this would happen. I at east have hope now between my experience with the vaccine and then my experience with the dietary changes, I will never go back to eating as I did! The dietary changes has not been real easy but now that I've been to the other side, I will never go back! Best wishes! ~ Lisa

July I was not certain about writing a Blog. Traditionally a blog is updated on a daily basis but since I update regularly on my website, I will not be doing that. I just wanted to give an overview of what a person can expect to read about on my website. It seems it is so trendy to have a blog now, and I've never been one to go with the crowd, follow the latest fashion, and such that's just not my personality (I think my website name gives a clue). However I am following the trend of MS patients who have written about how they have rid themselves of MS symptoms simply by eliminating certain foods from their diets. I never believed that was possible because the Neurologists I went to each told me that diet made no difference so that would not help MS symptoms. I was 13 when my optic symptoms first started and I certainly did not want to give up going to the fast food hangouts with my friends so I listened and didn't even give it a try. I'm 46 now and have decided to actually "follow this trendy crowd" of MS patients who changed their diets by eliminating inflammatory foods like sugar and they are mostly or completely symptom free now. I thought it sounded pretty simple until I actually started to eliminate these foods. For me sugar was the most difficult thing to give up, I was quite addicted but now it does not bother me one iota! I do however feel like this new way of eating has been more difficult than the 22 hours of labor I was in with my son AJ. At least that had a clear cut ending and I wanted to keep my prize! I can see now that these dietary changes are for life and the prize with this is keeping symptoms at bay. It is not easy at first but I personally will never go back to eating gluten filled foods. I have also been fortunate to be able to have used the Immunosyn vaccine (SF1019). It is simply my opinion but it appears to me that my symptoms are more under control. I had 1 exacerbation of vertigo after the summer heat of '07 set in and in '08 I had another episode of vertigo that was not as severe as it had the prior year and did not last as long. It just really appears to me that as I stated above the MS patients who have changed their diets have all had the same result of stopping progression and in many cases reversing some of their MS symptoms. Again it is just my opinion but it seems to me that I am recovering more quickly since I have gotten serious about changing my diet completely (about 12 months) in conjunction with using the vaccine consistently since May 15th of '07. I can only share my personal experience with these two treatments, but I'm hoping that these instances will spark an idea in some of my MS compadres or maybe even a doctor or two. From some of the information I have been looking up, it appears that Neurologists & Physicians in general are only required a minimum number of hours in Nutrition to receive their license. I can then understand why so many Doctors do not suggest dietary changes for their patients. If they are taught that prescription medicine is the best answer and are not taught that dietary changes could be just as effective why would they suggest it? If a doctor doesn't know, why would he or she suggest it? I always remember a particular statement from watching an Oprah show, "When you know better, you do better". I do not remember what the show was about but I believe the quote is fitting in this instance. So many Physicians and Neurologists could very possibly change the lives of so many MS patients especially the newbies so they don't have to get disabled or even die like my friend Scot. My personal hope is to one day soon be able to see Physicians recommending these dietary changes in conjunction with the vaccine. As a patient who has gone through all this crap, I know they would greatly appreciate it as I have! No MS patient should have to become disabled or die. Maybe I'm an eternal optimist, but that's my story and I'm sticking to it!

Never give up! ~ Lisa Quick