My Immunosyn treatment

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.

The links below may be able to help you with that. The first link is from the EFT site about actual patients who have been helped by this new treatment. EFT & needle phobia. This next link is a 7 part series by Dr.Joseph Mercola showing you how to correctly use this very exciting new therapy. ~Lisa

10-24-08 I know I wrote last week that would not be updating this page since I am unfortunately not presently using the vaccine. I just want to reiterate how much better the vaccine has worked for me in comparison to prednisone, it works quicker with no side effects like water retention and insomnia. When it is approved I hope you all will ask your doc to prescribe it for you. I can still walk with no cane from the computer room to the bathroom, that was yesterday. I woke up today with my "old friend" vertigo. It does go away after a time, but if I lay down or bend over when I'm back in an upright position the spinning begins. Luckily I still had some refills left on my prednisone prescription. Since I have used steroids since '84 I have learned to gauge how much to take and for how long. Where I am at this moment I will take 60mg today and tomorrow, to get a jump start, then 40mg for a week, then 20, 10, and stop. I will either eat bananas or take a potassium supplement and also take uva ursi as a diuretic, which is a must! The next treatment I will be using is to have the 9 amalgam fillings replaced from my teeth. It will be interesting to see how much that will help. Only time will tell.

Have a great weekend! ~ Lisa

10-17- 08 I will forever know and believe that this Immunosyn vaccine is the absolute best bet for MS patients along with a diet of anti-inflammatory foods. It will be so great once it has been FDA approved! I have felt the benefits for myself and how my right leg is now is a bit weaker since my last injection on June 24th. The economy has played a role in my not being able to continue with the vaccine for now, the family members that were helping me are not able to chip in at the moment, I understand this and am grateful that I was able to try it for a time and see just how great it works! However I'm still walking, just not nearly as well as during the time I was using the vaccine. I use the wheelchair a bit more now especially when it is dark outside since I have no balance and also when my insomnia is at it's worst. I usually need to use Xanax every few days so I can get a restful nights sleep a few times a week. With my right leg a bit weaker I am back to using a low dose of prednisone, I think that is helping my leg from getting any weaker. I will probably stop updating this page since I'm not presently using the vaccine, I don't want to be misleading since I am now relying only on dietary changes for my treatment of MS along with prednisone as needed. However I stand by my extremely positive experiences while using the Immunosyn vaccine! It will change lives, but patients must be logical and not expect that a couple of shots will make them all better in a matter of days. It took time for your symptoms to get the way they are, it will surely take some time to begin to notice any positive changes. Pay attention to subtle changes, those changes will become more apparent as time goes by.

Never give up! ~ Lisa

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

10-03-08 As time goes on I notice such a difference with my leg strength since I have not been using the vaccine. I'm now just using the anti-inflammatory foods diet. I am using the wheelchair more and more, but I can still walk with the cane all over the house, I just don't over due it! Xanax is still my "helper" for falling asleep. However I am learning I cannot take it every day because my body gets too used to it and I need to take more and more. So I take 1½ mg every other day and sometimes if I feel I really need more sleep I will take that dose for 2 days in a row, then go back to every other day. That seems to work well for me. I'm still using 20 mg prednisone once a day, but will think about cutting it down to 10 by next week. As I understand it, Argyll is in the midst of making more vaccine, most was used for the FDA trials. Everything takes time, patience has become my "mantra" it has not always been that way for me, slowly but surely I'm learning! As I have stated above, the idea of adding the anti-inflammatory foods diet in conjunction with the vaccine is just my hope and opinion. It just seems to make sense to me that inflammation is the biggest problem and if I can maybe get better a little quicker by using these two treatments, why not? Only time will tell. ~ Lisa

09-26-08 My legs are still pretty weak, if you have read my stress & ms page you will have seen that I took a tumble on Wednesday. Big duh move! Thank goodness AJ was home, it would have taken a very long time for me to scoot on my butt to the living room. I should not have lowered my prednisone dose, it's a double edged sword steroids work for me so the inflammation lowers, but I already have the insomnia problem and steroids don't help that a bit!. So I thought I'd lower it a bit. Aaah hindsight! I won't do that again, AJ will make sure of that! Oh well. This is another area where Immunosyn "wins". When I was using it, it never made my body retain water and I actually felt a bit more perky. I still had and have chronic insomnia but I felt a little more energized, maybe because it was easier to walk. ? I am still also using a diet of anti-inflammatory foods. Just for the record, the dietary changes were my idea it was never suggested by anyone from Argyll Biotechnologies. I just started thinking that maybe by changing my diet to eating these anti-inflammatory foods that some MS patients state cleared up their symptoms. Maybe my MS symptoms might clear up a bit quicker than the 4 -5 years it took them to become well. I figure there is only one way to find out so I'm going for it!

That's my thought anyway. Have a great weekend! ~ Lisa

09-19-08 I decided to lower my Prednisone dose I had used 20 mg for 6 days, 10mg for 2 days, and now zero, hopefully I will not need to use it again anytime soon. I also am using uva ursi and cranberry pills to help relieve some of the lovely water retention. You will find that that is not even an issue when it comes to Immunosyn. At Alan O's site he also states it won't be long until it is available, I know it sure feels like an eternity but please just be patient a little longer. I admit I feel kinda guilty that I have been able to try this treatment and so many others have not. My friend Connie tells me to stop feeling that way, she's glad to hear about my changes. I'll do my best. ~Lisa

09-12-08 Stress is kicking my butt for certain. My legs have gotten more weaker, I can still walk with my cane but I have been needing to use the wheelchair more often. I detest prednisone, but I have always had good luck with it so presently I am taking 20mg daily. It is so interesting seeing for myself the difference between Immunosyn and prednisone. The Immunosyn never gave me the "steroid bloat" or made my insomnia even worse like steroids have. I am walking a little better since I restarted the prednisone, that I like. This morning I noticed another difference when the phone rang, I got off the couch and was able to get to the phone with no cane (probably not a smart thing to do!) but it was much more difficult than when I was using the vaccine. I was even "Swiffering" the floors, with my cane in one hand and the Swiffer in the other. I cannot do that at the moment I'm definitely reversing a bit, I hate that inflammation crap! I still completely believe diet is the key especially if a patient is early on. I'm also hoping to start back on the vaccine in the next month or so. It will be so wonderful when the vaccine is approved by the FDA, rumor has it that it will be approved sometime in '09. I pray for that every day. It will happen! Have a great weekend! ~ Lisa

08-22-08 I think I'm doing rather good using diet only. From my wonderful experience using the Immunosyn vaccine I believe my recovery would be even quicker if I could afford to continue using it. Since I do not have deep pockets that is not going to happen. That is why I feel so confident that my dietary changes to eating only non inflammatory foods is what is helping me now. The people that I know of who used diet only to treat their MS had full recovery in 4-5 years. I of course cannot see into the future but am confident that I will recover from MS at some point. It won't "be" overnight but it will "be" one day in the future. It will be great when this is FDA approved so more MS patients can get better. It is a long slow road to hoe but it is well worth it! It seems to me from my personal experience that if patients add a change in diet that they could recover a bit quicker. It just seems to me that there are too many "coincidences" with diet making a difference for quite a few MS patients. I will be bringing this idea up with my Neurolgist when I see him. He was one that did not believe diet would make a difference with MS. Only time will tell but I will do my best to change his mind! He is a very well respected Chicago Neurologist. Please check back next week for news on this continuing saga! ~ Lisa

08-16-08 It is still delightfully cool and comfortable here and I'm sticking strictly to eating non-inflammatory foods. Maybe I could recover more quickly if I continued with the vaccine, but since my body is continuing to recover with diet only that is all I will use from now on! I hope he FDA will approve this very necessary medicine sooner rather than later. So far from my personal experience I believe if MS patients changed to a diet of these particular foods and were able to add the vaccine they could very possibly have the same experience that I am having. Since I have no health insurance I have not gone to the one Neurologist I trust most, but I will make an appointment this week. I'd like to share my experience with him so he can share it with others. I first went to him in 1984 after my worst exacerbation being hospitalized and given ACTH for 6 days. I was always going to him with my odd suggestions of trying alternative treatments like, bee venom therapy he thought I was nuts but ordered an Epipen just in case. Even though I knew I had MS, he was the first Neuro who actually spit those very important words out! That is why I trust him so much. He was also one of the Neuro's I went to who did not believe at all that diet changes would help MS. However he also at one point decided to take a leave from his practice and try his hand at research. That ended up only being for one year, I was so happy when I received a post card saying he was back to his practice. So I hope and believe he will have an open mind when I tell him about these dietary changes and how much they are helping me. Of course I will tell him about the vaccine so when it is approved he could prescribe it for his other MS patients and also suggest these dietary changes.. Hopefully the Immunosyn vaccine will be approved in '09!

Cya~ Lisa

08-08-08 I am still stuck in the "mental place" where I keep waiting for the other shoe to drop. My usual summer experience like I know many of you have had has always been, heat, oops over did it, exacerbation, steroids, repeat. It seriously feels so strange for me to be feeling so well during the summer. Not that I'm complaining, I'm just not quite used to it yet but I think I can get used to it! :) My last injection was

on June 23rd, I'm just so thrilled that it does appear that those dietary changes have taken over for the vaccine. I know from reading some of the MS dietary books that it appears to have taken those patients an average of 4 years to recover. I do not plan on using anymore Immunosyn vaccine, so far so good. I would just like to see if I will continue to get better without any further injections. With my experience thus far I feel pretty comfortable that I will be able to at least maintain my current status. My balance is still quite bad, it has been that way since 1984 so if it does not make much improvement over the next few years I will look into having stem cells done. Only time will tell. ~ Lisa

07-25-08 I keep expecting that oppressive heat & humidity we nearly always have this time of year here in the Chicago land area. I'm not complaining it's a very nice change of pace that that has not happened. My friend Lorelei sent me an email with this sentiment;

Life is too short to wake up with regrets. So love the people who treat you right. Forget about the one's who don't. Believe everything happens for a reason. If you get a second chance, grab it with both hands. If it changes your life, let it. Nobody said life would be easy, they just promised it would be worth it!!!!!!!

Wow! I couldn't believe it when I read it! It fits so perfectly into the turn around my life has taken since I started the Immunosyn vaccine and then added the strict and necessary dietary changes. Though we live in the same town we lost track of each other since high school, I'm so glad we have gotten back in contact again. The concert was very nice, I could not believe how much I walked (of course with my cane) we even went to my brother Brian's house, it felt so good! It really is still amazing to me how great I am feeling. Sunday my cousin Tina is in town from England so I get to visit with her too, I actually feel perky enough for that...this is so exciting!!! It has been 32 days since my last Immunosyn injection! I will of course keep up with these dietary changes...forever! Have a great weekend! ~ Lisa

07-18-08 The summer heat is here but it's not nearly as bad as it was last year. I have admittedly have not gone outside yet this summer, but tomorrow I will be I'll just have to be smart and not overdue it. The plan is to go to a local theatre to see a piano concert by a famous Classical pianist named Lang-Lang in the evening. I've not been able to do that for several years. My mom and I would go see a ballet at least once a year but I have had no energy for that type of thing. So I'm pretty excited to go! I still feel pretty sturdy on my feet, no wobbling back and forth. Of course I am still sticking solidly to my non inflammatory foods diet. I am going to be adding the dietary experiences of my friend Connie who is in very bad shape and has been for many, many years, she has no balance, cannot stand or feed herself. Connie and her mom read the book MS recovery diet by Ann Sawyer & Judi Bachrach. Connie thought this would be a good idea since she is in much worse shape than I am in and other MS patients can follow along on her hopeful recovery. She is realistic in the fact that in a couple months she does not expect to be running around, or even walking. She just wants to give it a try since there is really nothing else for her to try. They decided what the heck, and they also believe as I do that there appear to be quite a few MS dietary books of patients, that have followed the same basic principals of eliminating sugar and other inflammatory foods and have recovered to some degree. It just seems awfully coincidental to me that after following these dietary changes they did have some degree of recovery depending on how bad their symptoms were and remember, these patients did not use the vaccine as I have. On that note, I still have not given myself an injection since June 23rd and I'm doing pretty darn good. I still hope one day these dietary changes and the vaccine will be recommended together by doctors. Hopefully I will be able to get through the summer not needing a vaccine shot, but I sure like the vaccine in comparison to prednisone, I do not miss the "prednisone bloat"! Best wishes~ Lisa

07-12-08 I just had to update with this little nugget! My mom stopped by yesterday and as I was standing there with no cane it felt different! My mom helped me put my finger on it she thought when looking at me I was not wobbling back and forth as I usually do. I've had a slight "sway" for decades but now that she mentioned it, that is what felt different! AJ agreed with her! Subtle changes are the things to look for. I'm still a bit amazed that I'm getting better and I have not used a vaccine injection since June 23rd. This is why I believe that MS patients could heal more quickly if they are able to combine dietary changes with the vaccine, but the vaccine is not completely necessary it will just take longer without it. Patience is also one of the most necessary components with or without the vaccine! My hope is that the vaccine will be approved by the FDA very soon. Knock on wood!

Never give up! ~ Lisa

07-11-08 I guess I'm just a person who has always pushed the envelope. Sometimes in the past that has many times pushed me to exacerbation, but so far so good. My last vaccine injection was on June 23rd but I am feeling so good!!! My mom came over on Wednesday and she was commenting on how I was just standing up and walking with no cane! I now often just stand up from the couch, walk 6 steps to the phone. I had gotten into the habit of taking the receiver with me because it was so difficult to walk from the couch to the phone cradle. This is so exciting to me! Last May I at least had some hope that the vaccine would help a little with the MS symptoms, but I never truly expected this! It appears to me when I really got serious and stuck to the dietary changes I was able to do so much more physically. I have been fortunate because it has not been too hot here in the Chicago area I'm positive that has helped, it always has. However today it will be in the 90's and August is right around the corner usually quite hot & humid so we shall see, hopefully no symptoms will crop up. I'm very hopeful that I will continue to stay on the mend. Here is what I wrote last year at this time, "In mid July my sleeping had not really changed enough to note, I was still 2mg Xanax, but I was walking more frequently with the cane only (IE: living room to kitchen 45 steps) also, a couple days I was able to lay down and fall asleep for a few minutes." Wow! To test myself moments ago I walked without the cane from the computer room to the kitchen 82 steps and turned around and walked back to the computer room caneless so I could write this down! As you can see from what I documented last year I am certainly walking more and better, sleep is a little better but I have a ways to go on that. I do not use Xanax anymore, but I must admit if I had some I would use it every once in a while to have a sound sleep. It also does appear to me that when I am able to wear myself out I do sleep better. I'm certain that will all come together once I can naturally make myself tired with exercise and chores and such. I also feel pushing it is a mental exercise for me, my past experiences with overdoing it has usually led to exacerbation. I need to wrap my brain around the idea that exacerbation will not necessarily happen anymore. As I stated above I do have the tendency to push myself, I won't change that I feel I need to see how far I can go until symptoms return. Hopefully they won't but the summer heat is just beginning so I guess only time will tell but I am so hopeful for the future now! My Grandma Winnie (my mom's mom) will be 100 on August 14th! Last year I was not so confident that I would be able to attend that big event, but now I know I will! On that note it sure seems genetics in my family = long life, so I better keep up those dietary changes and keep on healing! Have a great weekend! ~ Lisa

07-04-08 Happy Independence Day! I have been remembering prior instances over the years when I have not been able to sleep and eventually the vertigo would set in. I believe that is the problem for me right now, it has been unusually cool here. Last year it was extremely hot and the vertigo has worse, much more spinning. The vertigo started on the 26th of June and has continued through the 27th, 28th, 29th, 30th, it has lessened quite a bit through July 1 - 3. The severity has lessened day by day, I notice it most after laying on one side, I sit up and the spinning would begin! The spinning does eventually go away as the day wears on...thank goodness. When I woke up on the 26th and walked to the bathroom a few steps (of course hanging onto the walls) and not thinking about the tile design on the floor and walls. But now I'd say the spinning is now 95% gone, just a little woozy if I move too quickly. Talk about vertigo...that was quite an interesting experience walking into the bathroom. The tiles on the bathroom floor are 1" squares with an array of green, the walls are green 4" tiles, that was really whacking my eyes out! I never really thought about that before, in a sick way it's actually kinda funny! As the days wear on the vertigo lessens and lessens. I have also started taking a more holistic sleep aid that seems to be working rather well, I have been using that since the 27th. I have been using melatonin for years, it helped a little but not enough. I had never used 5htp before this month. The product I'm using now is called "Life Solutions Liquid Natural Sleep", the melatonin and 5htp seemed to be working rather well except I had to drink a lot of water to take all those pills so I was up going to the bathroom a lot! This product is in liquid form so I take 3 TBS of it and I fall asleep after an hour or so and I'm not up going to the bathroom all night! The other reason I feel that insomnia is a major reason for the vertigo is that it really has not been terribly hot here recently so I don't think the weather has much to do with it. I do remember last summer I did get vertigo and it was much hotter last year than this year and the vertigo was much worse than it is this time around. I am of course sticking with the dietary changes. With the vertigo, exercising has not happened very often but I will get back to it when the vertigo is completely gone. By 07-02-08 the vertigo was much better, I am walking a little more with the cane only about 40-50 steps from computer room to bathroom. I am not comfortable pushing it too much, I think next week I will be even better. Sleep is still an issue, it seems if I sleep badly for a couple days then the next day I sleep quite well. I remember my teenage days when I could walk 3 miles per day I had no problem with sleep then, so I'm hoping that when I am able to really exercise a whole lot more than I can now that I will simply, naturally fall asleep more easily. Insomnia was not really a big problem until around 2000, that's not too long ago maybe I will be able to get some good nights of sleep soon.

Only time will tell, I'll wait! Stay tuned and have a great holiday! ~ Lisa

06-27-08 I did not remember everything that I had written previously before my big oops. I do remember I wrote about the stress in the back of my mind concerning finances, which is still there. I'm also dealing with the heat of summer as I know many of you are also. I woke up again with a touch of vertigo this morning, it does get better as the day wears on. I truly in my heart believe that using the dietary changes along with the SF1019 vaccine will likely help in healing my body a bit quicker than just using diet only. I do not have insurance anymore, but I do plan on going to see the one Neurologist I trust most. I went to him since 1984 after my first really bad exacerbation that landed my in the hospital with vertigo. He had no belief that diet would help but he always did have an open mind, I would go to him with very alternative treatments like bee venom therapy (he thought I was nuts) B1 & liver extract just to name a few. He is a rather well know Chicago Neurolgist, I remember hearing his voice on TV one day after a woman who was in a coma was taken off life support. I was so excited to hear his voice! Anyway, my hope is that once the vaccine is approved he can see for himself through me that the vaccine and non-inflammatory foods diet is the way to go! I guess that is the rebel in me speaking. Knock on wood! ~Lisa

Happy Father's Day!

06-20-08 I can't believe I made the huge error of not having AJ go to the store and pickup a zip drive for me so I could save last Fridays update!!! I could just kick myself!!! I will try really hard to remember as much of what I wrote last Friday. I may be a little stressed but recovery-wise I am walking very, very well! My memory will be getting quite a workout this weekend! I am also starting to be able to sleep much better. It has been unusually cool and comfy the past few days here in Illinois but that is about to change so hopefully my sleep will continue. Remembering what I wrote last week will take a while, I'll do my best and try to update today. Have a great weekend! ~ Lisa (I just found the missing dates from 5-30 to 6-13)

06-13-08 I have been sleeping great this week! I am not 100% certain what one thing is helping most, maybe it is just a compilation of the mix of things I am trying, the EFT, visualization, the homeopathic items. ?? I'll just keep doing what I'm doing, I love the sleep, I can do so much more!!! I often simply forget to grab my cane, I just start walking! I do feel confident that the non inflammatory foods diet is absolutely making a big difference and my belief is also that the SF1019 vaccine is playing a huge part in cutting down the time for recovery since it does help in reducing inflammation. When I am better I will contact the one Neurolgist who I trusted and still trust the most and show him how I am doing. I would often come up with odd alternative treatments to get his opinion on them, (bee venom therapy) was one of them, he thought I was nuts but went along with it, he just ordered an epi-pen for me just in case I had an allergic reaction. I also gave him info on something called "Cari's Cocktail" which included one antidepressant and B-12 tablets, it seemed to work as a type of steroid, I used it for about a year; here is a link to this treatment. "Cari's Cocktail" He did of course recommend the ABC drugs, I first tried Betaseron but quickly stopped using it because if I did not take just enough Acetaminophen, I went from being able to walk a little bit to not being able to move my legs at all! That scared the hell out of me so I told my doc what happened and that I refused to use it anymore, I felt why should any medicine do that, that did not seem helpful at all! He then prescribed Copaxone, I used that for about 9 months until I had another big & new exacerbation then I quit using it. I'm obviously no doctor but I did not see how these new medicines were doing anything but depressing me and causing more stress when I would continue to use them and I would continue to get worse!!! He decided around 1999/2000 to leave his practice and pursue going into research. I was so bummed out, now I had to find another Neuro I won't get into that, it did not workout very well. About a year later I received a post card telling me that Dr. G was back! I was so excited and made an appointment quickly! The next year, I had no more insurance so that was it for going to him. I still do not have insurance but I will go to see him after the vaccine is FDA approved to show him how I am doing. He did not believe that diet would make a difference, just as the other Neuro's I went to over the years but he always kept an open mind. I believe when he sees how much better I am doing he will with no doubt see a difference (I went to him for 17 years) . My hope is that he will consider recommending to his other MS patients, (especially newbies) to change their diets to eating non inflammatory foods and also prescribe the SF1019 vaccine so that the dietary changes might work more quickly in alleviating MS symptoms. That of course is simply my opinion I don't have the technical knowledge that doctors have, but I certainly have lived with this disease for 33 years now, first hand knowledge has to count for something. I know the first test he will have me do is the old "stand with your feet together and close your eyes" I still cannot do that, but hopefully by the time I go see him in a year or so that will be better. Only time will tell! Over the years I would see something on the floor, maybe a piece of paper and simply not have the energy to just pick it up, lately I actually pick that thing up! Daisey sheds a lot so I will see clumps of hair on the floor and actually pick them up! My memory is getting better, but for instance this morning I was in the LR where I have my MS diary book that I put my notes in for updating this site and also my reading glasses. I walked from the computer room to the LR to grab the book but of course forgot to pick up my glasses so I ended up making a double trip, total around 200 steps...I did not use my cane! I need to work on my memory of course, as well as my handwriting. My block writing is pretty good if I take my time, but I really need to work on cursive, my hands cannot keep up wit my brain! I will need to find one of the MS diary books that I used years ago when my cursive writing was very nice, probably about 15 years ago. Just for comparison and hopes that I will be able to write somewhat like that as time goes by. Cya~ Lisa

06-06-08 Sleep has been a bit better using the EFT & visualization, I have felt rested the past few days. It has been hot & steamy here in Illinois, as I'm sure it is in many places! It is 9:30am and already 80°! It looks as though summer is here to stay. Of course since there is no CAC in this house I will be taking it easy with exercise and not walking too much. My ability to walk is still pretty darn good, I can walk with my cane and sometimes without. I still walk to the kitchen with my cane and stand to do some dishes, but now is the time I have to pay attention and not do that too much, there is no AC unit it the kitchen. It seems impossible that one day I will be able to tolerate the heat and walk without my cane, but I feel confident it will happen! I now feel it will not just be a dream, but a reality that I will be able to go to a ballgame or simply a local village fair, it has been many, many years since I've been able to do that! That will be so much fun! I have not had an inkling of vertigo since Memorial Day, I hope it stays that way through out these upcoming summer months I'm very hopeful! Have a Great Father's day! ~Lisa

05-30-08 Sleep is still a problem, but I have been using the EFT a lot more and that does appear to help, I'll just keep that up. It does somewhat utilize visualization which I have done for years, I like using that, it also exercises my brain. It has been pretty cool and comfy here in IL 60-ish until Memorial Day, it then went to 82°, my tolerance is about 75° I really should have been thinking. I was so excited that I have been able to simply walk to the kitchen with my cane and stand at the sink and do dishes, walk so much more with-in the house doing laps I just kept doing that...duh! We don't have central air in this house, only in my bed room, living room and computer/band room. So I really should have been paying attention to that, shame on me! I woke up to go to the bathroom on Memorial Day and quickly realized my old friend vertigo was visiting again. It did go away for the most part except when I would lay back down, then when I would sit up I would get dizzy again and see double but after several minutes it went away until I would lay back down and repeated that crappy cycle again. Each subsequent day the vertigo was less severe, today I'm vertigo-free I don't feel dizzy at all. I remember last year when it first got hot I had major vertigo much worse than it was this time. Last year I was not able to walk around as I can now, I primarily used the wheelchair, this year I use my cane much more than the wheelchair. On that note I must be more cautious in not overdoing it, I've paid the price for that in the past! When I first started the vaccine last year I had not yet decided to change all my dietary ways, I'm glad that I have now because I personally feel it could be part of my recovering more quickly. I've been exercising more, but now is the time I need to pay extra attention especially since I do not have central air. When I do my laps in the house it is not cool and comfy in every area so I need to get realistic about my abilities. I also have to remember that not just foods like sugar cause inflammation but stress and I have had a lot of stress since 09/07 when my ex had to move out of state with his wife and has not been able to secure a job since then so I have not received alimony for many months, I try not to think about it. He has always paid since we divorced in 2001, we were married for 18 years and are still friendly, no hard feelings so I believe it is just the economy and he simply does not have the leads he had up here in Illinois. I am so very glad that I am also able to use the SF1019 vaccine, I'm sure that helps with the stress inflammation. I wish I could snap my fingers and make it available for the rest of you, but since I cannot I would strongly suggest seriously looking into changing the diet to eating non-inflammatory foods. Here are the books I suggest especially the ones written by MS patients! I admit this is not the easiest thing in the world to do especially if you are like me and have eaten too many junk foods for decades. I personally feel the dietary changes are much more difficult than even having natural childbirth, that was really long and difficult, but this new way of eating is forever! For me sugar was the most difficult, but I have not eaten it in about 3 years now, I will continue with this new way of eating no matter what! My best wishes to all of you! ~Lisa

05-23-08 I'm sleeping okay, but not perfect I know many healthy people who have problems with that, so I probably should not complain! My memory is better than it was a year ago so I will try again with the EFT my mom recommended previously, it was just frustrating at the time because my memory was so bad and I needed to remember to do simple hand movements in a certain order, I'll give it another try! I spoke with my mom again and looked at the EFT site, it does seem pretty hopeful, I will try it again tonight! I am still exercising more frequently, but admit when I do not sleep well I do not feel confident in over doing it with the exercise. I guess memories of past bad experiences (steroids) after doing just that has somewhat scared me off of doing extra exercising. I do know that I will need to try to erase that memory somehow (maybe through EFT?) because I know I need to be more diligent in getting my body stronger, and I feel I do need to "wear myself out" so that I will be tired at night and fall asleep (like healthy people do). I also know that my dietary changes are also helping so much, eating non inflammatory foods is very key to curing this disease. Sometimes not so tasty but it just takes some ingenuity and practice. There are a lot of websites that have good recipes and gluten free cookbooks. For now I am simply sticking to eating fresh fruits & veggies and sometimes chicken, now that I'm sleeping and getting around better that is much easier. It will reach around 85° this weekend. That has always made me nervous because heat has always = exacerbation, but I feel much more confident this year since last summer while using this vaccine I did not have one exacerbation so I will presume the same will happen this year. Have a great Holiday Weekend! ~Lisa

05-16-08 Yeehaw!!! I have been sleeping really well for about a week using primarily only one 3mg melatonin! Yesterday was my one year anniversary using this vaccine!!! I still feel making these dietary changes is also helping quite a bit, I will never change back to my previous eating habits! It's taken me a long time to come around to believing that eating non inflammatory foods really does make a difference, better late than never! I have also been exercising more, the past 5 days or so I have been doing laps within the house. I use my cane but I have made an average of 5 laps about 80 steps per lap! That probably helps with sleeping as well. I never would have believed I would be able to do this a year ago! In fact today I felt strong enough to go with my son to take Daisey to the vet for shots and a nail clip! She seemed very happy that I was with her this time. I used to just take her myself but I stopped driving 2 years ago...that will be next!!! Of course I will not push it too much, that would not be wise either. Last year was the first time that I could remember where I did not need steroids to get through the summer heat, I am certainly hoping for a repeat this year! I have been noticing more books lately from MS patients who have changed their diets and helped rid themselves of MS symptoms, here is a link. This past Tuesday I did not use my wheelchair when I went to bed, just the cane, I will pay attention to this so I do not overdue it, it's just so exciting to actually be able to do that! Wednesday I opted to go back to using the wheelchair at bedtime, I felt more secure than going to bed with cane only for 2 nights in a row. I will get there at some point! I'm also still reading that book by Dr. Norman Doidge The brain that changes itself. I've been thinking up my own visualization exercises reading that book it is fascinating how the brain is able to change itself, I'm hoping to maybe change my balance. Only time will tell. I was also looking at a online video from the Myelin Repair Foundation, fascinating to get an idea of what myelin repair looks like, I use that for visualization. I'm still not overly perky on most days but it seems to be coming along! I will presume that as I'm able to sleep, energy will return. That will be nice. Have a great weekend! ~Lisa

05-09-08 Sleep as usual is not so great, so I decided this past Monday night to not take anything at all, no melatonin or benedryl. I would just let myself get really tired 'til I had to lay down and try to sleep. It has been working a bit, however last night I took 1 3mg melatonin and 2 generic benedryl capsules. I slept the best of the week, though I wake up every 2 hours to go to the bathroom, it's sleep just not very sound. About 4 am I woke up again and decided to go lay down on the couch by Daisey, she nuzzled up to my legs and out I went! I guess Daisey is a different form of sleeping pill! So this past week also was that time of the month so that probably did not help. If I was really tired and was not comfortable over doing the walking I would tend to use the wheelchair a bit more when I needed to walk 100 steps or more, just being over cautious. That was usually first thing in the morning when I would be letting Daisey out. When I feel rested I do find myself walking often with no cane at all, 10-20 steps in the kitchen making a cup of tea or doing a dish or two. I do the dishes every day, when I'm overly tired I have noticed I may leave a batch of dishes and do them the next day when I am hopefully more rested. I am of course still sticking to dietary changes, this I will not change. Another thing I have been noticing is my memory is better even when I have not slept very well, simple things like remembering birthdates of nieces and nephews and friends from high school I have not been in contact for a while. Simple stuff but noticeable to me. We will see what next week brings me...Have a great weekend! ~Lisa

05-02-08 My sleeping by using the CD's my mom gave me seem to be really helping, I have been sleeping very well this past week. The CD is an hour long so I do wake up when it is over but if I play it again, I fall back to sleep...feels great! When I can sleep I feel more confident in exercising more. I have been paying attention to how the muscles in my legs feel so I can tell the backs of my thighs need a bit more attention. Since I slept well and have more energy today I plan on doing some of the things I remember doing in the past to strengthen my legs, one of them is laying on my stomach and just slowly curling up each calf muscle. It so exciting feeling my brain and body coming back to life! I know I still have a ways to go until my brain is working well enough so that I am able to use my memory better, I'm amazed that I am actually looking into taking some classes at a local college in the Fall. I never did go to college after high school, I just worked then the MS kicked my butt. Now that I'm kicking MS in the keester I really feel as though I could go back to school and have a career of some sort. I may start with something in the nutrition field since that is what I am now doing to help my body heal. I'm walking so much more now with no cane at all. Looking back nearly a year ago when I received my first SF1019 injection on May 15th when I first went to see Dr. Morales I was very hopeful about the vaccine but at the same time it was so hard to believe I would feel as good as I do now! Never would I have thought I would actually be seriously thinking I could go back to school...very exciting! Now that I am feeling more energetic I plan on adding a chat room to my site, when I do I will put a notice on the index page. One of my biggest hopes is that this vaccine will be approved by the FDA soon so that other patients can feel the hope it has given to me. My other hope is that MS patients will seriously consider looking into dietary changes especially the newly diagnosed. I can only imagine how different my life would be had I changed my diet when I was 13, I suppose that was just not meant to be, that what is happening now was meant to be. I know how fortunate I am I will always remember that! Have a fabulous weekend! ~Lisa

04-25-08 My legs are getting so strong! My sleeping varies but last night I slept really good using melatonin and generic benedryl and listening to that tape my mom gave me. I am walking more and more with no cane for short distances such as when I am in the kitchen and I just start walking with no cane to bring a cup of tea to the microwave maybe 15 steps. Wednesday & yesterday I wheeled myself into the kitchen to wash some dishes and make a cup of tea, then I just walked my tea to the couch with no cane that felt great! I have been exercising more lately one of the simple things I decided to do was to simply tighten the muscles in my thighs & glutes while walking or just sitting. I've also been doing ab work because I would notice my low back was hurting a bit while standing or walking, and I remembered from past experience that meant I needed to make sure I am doing abdominal exercises because my ab muscles were not as strong as they need to be. Wednesday & yesterday I also decided to do some laps within the house so I walked the halls that equals 60 steps I took 2 laps, my thighs are nicely sore today! I know this is also when I need to be diligent with exercise, but also decide when I am doing too much, this is the hard part for me because I'm so excited to be doing so well I want to do more. I am absolutely still sticking to the dietary changes I know I've said it before but I now absolutely believe paying attention to and eating non inflammatory foods has everything to do with ridding my body of this crappy disease. I've emailed or spoken to some of you and I know I am very fortunate to also be able to add the vaccine to my anti-inflammatory routine, I will never forget that. I may not be able to go back in time and change my eating habits back when I was 13, but I can change them now and forever. My hope is that if any MS newbies happen upon this site that they will seriously look into making those dietary changes sooner rather than later. Have a great weekend! ~Lisa

04-18-08 Last night I took my last 2 mg Xanax pill. I slept like a rock but it sure makes my legs much weaker and it is taking my brain much longer to wake up, I think I will stick to just using more natural products like melatonin and a CD my mom gave me called Theta Meditation system. I also started using something from the same company called The little sleep machine it is 3 hours long and I fall asleep! I am sticking to my new way of eating since it appears to me that Dr. Swank was correct, I've been reading about more and more MS patients who have healed their MS symptoms through dietary means by eating foods that do not cause inflammation like sugar for instance. I'm sure the SF1019 vaccine is helping too since it also reduces inflammation, I am fortunate enough to be able to use both my hope being I will heal more quickly. Either way I don't believe I will be healed overnight, I'm 46 now it has taken my body 33 years to be in the shape that it is now. But I'll keep trying, I have been noticing I am able to walk more not holding onto anything. I know from past experience though that I must be careful about pushing it too much, I've paid the price for doing that as well. Patience is key! ~Cya Lisa

04-13-08 I am walking so well! I find myself just instinctively walking with no cane for short distances, for instance if I'm already in the kitchen (to not overdo I usually wheel myself into the kitchen) doing dishes or making a salad I'll just start walking to the microwave to make a cup of green tea about 15-20 steps, kinda fun! From past experience I still will not push it too much, that has often lead to exacerbation and I really want to avoid that! I was pretty busy on Friday so I did not get to my usual SF1019 update, better late than never. Insomnia is still a problem, but I am trying some visualization exercises, I'm making up my own visualization exercises where I visualize sparks of stem cells (though I have never had stem cells injected into my body) going off within my entire brain. I've probably stated this before but through MRI I'm told my lesions are primarily throughout my brain, cerebellum and brain stem. Within the brain I'm told is where Melatonin is made and in the brain stem is where Serotonin is made and that is likely why I have such a difficult time falling and staying asleep. I've been reading a very interesting book called "The brain that changes itself." by Norman Doidge, M.D. My hope is that between the dietary changes which require eating foods that do not cause inflammation like sugar for instance and trying to stay as stress free as possible, stress also causes inflammation and using the SF1019 vaccine which of course also helps to reduce inflammation that one of these days my MS symptoms will go away forever! I know it will not happen overnight, but it's been nearly 33 years since my very first symptom and I'm simply sick of it! I'm not a good quitter, I never was a very patient person in my youth but I am learning how to be patient, what else can I do? I'm determined to get better! Cya next week~ Lisa

04-04-08 The insomnia is still a problem, this past Tuesday & Wednesday I probably only got about 2-3 hours of sleep both nights. But strangely & pleasantly on Wednesday I noticed one of those "something seems different" moments. My legs felt so light and easy to move, I haven't experienced that sensation for years. Thursday I slept iffy and my legs did not have that light feeling. Last night I probably got 8 hours of sleep with the help of Xanax, I still start the day with the wheelchair to let Daisey out so I am not yet sure how my legs will be later today once I am fully awake, it's 9:05am right now, I'll update on how my legs feel later today, AJ needs to use the computer anyway. Cya! ~Lisa

It is now 11:10 I have gotten out of the shower and I did notice it was much easier to shower, it took about 15 minutes compared to the 30-40 minutes it took a year ago, and my legs weren't dragging so much.

It is now nearly 6pm, my legs feel pretty darn good! My legs do feel lighter, it's much easier, smoother, when I'm walking with the cane and without the cane! One of the first things I noticed on Wednesday other than that "something seems different feeling" was when I transferred from the couch to the wheelchair it was so smooth and easy my legs felt light, it has been many years since I have had that light legs feeling they usually feel more like cement. I have been adding different exercises off and on like doing wall pushups, I just move my feet further away from the wall to "add weight". I will go to the kitchen where there is a ledge I can hold onto and do plie's though this time I will not overdo it with the exercising! Exercise is a must, but I also must not do too much! I must try to not cross that darned invisible line! So I will use the wheelchair for instance when I need to wash dishes, so I don't use all my leg energy on walking to the kitchen I'll wheel into the kitchen then stand & do the dishes. Little changes like that. Have a great weekend! ~ Lisa

03-28-08 I'm still working on getting the sleep meds right for my body. We women of course must deal with that time of the month which certainly is another problem. I have been doing very well with really paying attention to the things I ingest. A couple weeks ago I actually ate some cheese pizza with my son, it was sooo good but I will not do that anymore! Pizza has all the foods I must to avoid! Dairy, white flour, sugar used to raise the pizza dough and probably sugar in the sauce. I know eliminating these foods will be very difficult, for me so far sugar had been the most difficult thing to give up, but it has been 3 years since I stopped eating sugar, now looking at or smelling those confections does not bother me one bit, but it was really hard to do, I did have a slip one day but it was easy to go back to no sugar. I also know that eliminating these foods and taking supplements to help remove the Candida from your system can cause J-H reactions, but they do go away. In fact I had been neglecting to take Candida Cleanse which helps in removing the Candida Albicans that has been residing in my body for decades. So silly me, I took 2 Candida Cleanse pills twice yesterday and woke up with a slight case of vertigo this morning! It went away in a few minutes and I feel fine now, I guess I'll stick to one pill before meals from now on. I won't up the dose so quickly again! I took my SF1019 vaccine earlier today, I believe that probably helped me with the vertigo too, in the past I always needed steroids to help that. I just have to remember to stick to the correct dose of the Candida Cleanse for now. Have a great weekend! ~ Lisa

03-21-08 I'm still doing pretty well, my legs are stronger but I will not make that mistake again by overdoing it with the walking with cane only until I feel my legs are strong enough to do so. I start the day with the wheelchair and use my judgment from there on just how much I think I can realistically push it without stepping over that invisible line that last time lead me to needing Prednisone. It's a fine line but I know I can handle it if I just use my realistic judgement. After letting my Daisey outside I usually go directly to the computer/band room, I use the WC to do this partly because my son moves the computer chair to reclining and I can never move it back to the upright position, not so comfortable so the WC is at least in the upright position. From the computer room I will walk the 10 steps to the bathroom and back to the computer room. I still have that one stressor hanging over my head which I have not control over. I can only work on not letting it get to me and changing the things that I can control, like dietary changes that can help alleviate some inflammation. The vaccine also helps with the inflammation. It really helped with the summer heat of '07 and I feel I did not need to use massive doses of prednisone because I was consistently using the vaccine. I feel I was just overloaded with that one stressor that I have no control over. The other big stressor that I know I have referred to is that I have chronic insomnia, I know from past experience that using Xanax really helps me to sleep, but I ran out and a friend suggested trying Ambien CR. It was very expensive and did not do a thing except deplete my bank account. I know from experience when I'm unable to sleep my brain takes an "unauthorized extended vacation" and I just don't think. I will not make that mistake again I love to sleep! I feel like a different person when I'm able to sleep I feel great today! All of those things = stress which = inflammation, which MS patients do not need! I understand that curtailing stress is easier said than done, life is stress, simply getting up in the morning is stressful, doing simple things for healthy people is often quite an ordeal for the MS patient especially if you add children to the mix. We love them dearly but "mother & father guilt" is often there because we can't do those things for our children that healthy people are able to do. It is not our fault of course but the guilt often lingers. When my son graduated from High School in '06 I was able to see him graduate but after the graduation it was time to go to the lunchroom and take pictures with your children. At that point I had no energy left so my mom & step-dad took me home, I just balled my eyes out when I got home I was so sad that I couldn't do that "simple" thing that I can never get back. When AJ got home later he asked "where were you, I looked all over for you" of course the tears flowed, my son was so great he gave me the biggest hug ever and he ended up shedding his own tears. We are so close now, I don't know what I would do without him. It is memories like that that make me really think that dietary changes, difficult as they are will likely help me to get rid of this crappy disease but I'll never know unless I put all my effort into it, so I will. It took Ann Boroch 5 years to rid herself of all her MS symptoms, my hope is that by making these dietary changes and using the vaccine that maybe I can recover a bit quicker. Only time will tell but I feel I must try my hardest, I really want to participate in life again! Thanks for checking in! ~ Lisa

03-14-08 Well, as usual the prednisone helps me so much, I wish that helped with the insomnia. The Xanax works, but my body gets so used to it I always need to take more. So, I am going to ask my doc to order Ambien CR I've never tried the CR type so we shall see. Of course it would be ideal if I could just lay down and fall asleep at the end of the day as I remember doing years ago...one day. My legs are feeling quite strong and I do walk sometimes with no cane, just not so much when I am exhausted. IE: Instead of walking from the couch to the kitchen sink and standing and doing dishes, I will wheel myself closer to the kitchen, park the wheelchair walk to the sink and proceed with washing the dishes. I'm still doing my stretching routine, that feels good. The weather is changing, I'll be glad to see the snow gone for now. I'm not too concerned about the coming summer heat since I faired so well with it last year. I have been able to keep up better with the dietary changes, mostly salads, with chicken and lots of veggies. Growing up I was a chubby girl so I ended up being one of those kids who used food for comfort eating all that bad junk food. I just started thinking about that and remembered about 10 -15 years ago binging on Cheetos and "coincidentally" in the next day or two my legs getting weak, that happened many times. I guess I've thought about that over the years and knew in my mind...coincidence?...probably not, but I never went to a doctor who suggested that diet would make a difference, so I did not pay attention to what my body was trying to tell me. I'm listening now! Also with the weather changing I will make an appointment to get started with having at least one of my Amalgam filling replaced, that will be a slow process because of cost of having 9 replaced, all in due time. Slowly but surely! I am very excited about the future, soon it will be the one year anniversary of my initial treatment back on May 15th. Prior to that I was very, very discouraged and depressed, I just felt as if I were "fading" as my late friend Scot would tell me that he felt that way, I don't feel like I'm fading away anymore. I finally feel hope but I know I have to be realistic. Having symptoms for 30+ years I feel the recovery will take time but I do not have a "crystal ball" so patience and tenacity will be the key. Have a great weekend! ~ Lisa

03-08-08 I had the best nights sleep last night in such a long time using the Xanax....yahoo! I am going to be more cautious though and wait for a few more good nights sleep before I start my more consistent exercise routine, I won't make that over doing it mistake again my legs need to be much stronger before I am walking with cane only! I'm not so fond of steroids, but I am fortunate that they work for me. I was speaking with my friend Connie yesterday who I have known through my website for about 5-6 years. Her MS is more advanced than mine but we share the same symptom of being unable to fall asleep which seems to have led us both to that embarrassing uncontrollable crying, have any of you have that problem? At the time of my divorce I was having that awful inability to sleep and then the uncontrollable crying, I hate that! So my doctor prescribed Prozac for a short time, that was the best thing that happened to me! It did not help the sleep much but I was not balling my eyes out all day, that was a God send! On that note, a few months ago since I have been under this incredible stress the insomnia and the uncontrollable crying began again. It was so bad my poor son would see me uncontrollably crying on a daily basis, he would go for a walk or to his room, I'm sure this was very hard for him to see his mom that way so I started taking Prozac again. I'm so glad I did and so is AJ! I'm glad Connie and I spoke yesterday, I never thought to talk about that. We also spoke about how it seems that MSers like myself who are able to use our legs and walk to some degree are the ones who have more lesions to the brain and not the cervical spine and have more problems with sleep and cognitive issues like forgetfulness. It seems as the MSers I've spoken with who cannot walk at all do not have problems sleeping and their cognitive abilities are better than those of us where the brain is primarily affected. My last MRI was in 2000, I can only imagine the new lesions that are there now! I was told that since the lesions at that time were in my brain (where Melatonin is produced) and also in my brain stem (where Serotonin is produced) that that is probably why I have such a difficult time falling and staying asleep. Since I am sleeping better thanks to Xanax I would like to get the MS rebel forum running, I've never done this so please be patient with me. What would you like to talk about? Let me know by clicking this email lisaquick640@yahoo.com Any other suggestions are always welcomed! In fact I just had a question posed to me about if I'm using the vaccine than why am I needing steroids right now? Not being a doctor myself I can only answer from my own MS experiences over these past 32 years. How I am observing it is like this, I would often have exacerbations during extreme heat and or extreme stress. This past summer was the first time I could remember that I did not need to use steroids at all during the summer heat, that amazed me but I was not under the extreme stress that I am under presently. It may be nice and cool, but I am experiencing a huge stressor that I have no control over that is why I believe that particular stress has caused me to need to use Prednisone, though the amount I am using is half the dose (40mg) that I would normally expect to be taking for this type of stress. I feel that is because I am using the vaccine. Again, that is my opinion from my personal experiences since summer 1975. Thank for your question. ~ Lisa

03-07-08 I believe I have stepped over that "invisible line" of over doing it! I have realized over this past weekend that I am having a much more difficult time walking. It first occurred to me one morning when I walk with my cane to let Daisey out the kitchen door so she can do her business. My legs were really dragging and I nearly fell a couple times through out the day. I was not listening to my body! I am now, and I remembered that I had (8) 20mg tabs of prednisone left so I started using them, I took (4) on the 4th and (4) on the 5th. My legs feel better, but I will remember this lesson and be more careful about just how much I should push it! I need to remember that the last house I lived in was 2 bedrooms about 1200 sq.ft.(my house). For financial reasons I had to move to a different house last August it is about twice the size of my house, 4 bedrooms and a larger kitchen, much more walking room. This house belongs to my mom and I actually grew up in this house so it's a bit difficult even a bit depressing sometimes because I remember running around the halls of this house with my brothers and running around outside doing cartwheels and such. I guess that just gives me more incentive to stick to the plan of watching my diet and using this vaccine to recover as much as I can and not over do it! I also decided that I should just start the day using my manual wheelchair and use my cane sparingly. Previously the first physical thing I would do other than going to the bathroom is to let Daisey out to do her business, and I had been walking with the cane to let her out. This simple change appears to be helping my leg strength so I will continue to start the day with the wheelchair and use the cane sparingly. I have remembered other times in the past when I would overdo it or be under more stress than usual and that would inevitably lead to exacerbation and both of those things are presently in my life so I should have been more cautious. I know better now so I will be more aware of how my body is reacting. I also felt I need to take prednisone for a bit longer than 2 days so I called my doctor and asked him to prescribe 10mg Prednisone for a few more weeks so I can wean off of it and since insomnia plays a huge roll for me I asked him to prescribe some Xanax. I really need to get some good sleep, I will take that differently as well. In the past when I took Xanax I would take it every night, but my system would get used to it and I would need to take more. This time I am taking it 2 - 3 times a week so my body does not get used to it and I don't feel the need to increase the dose, that is also working very well. The palm of my left hand still remains the same, no numbness. My foot muscles still have some soreness in them, it has lessened a bit since I'm not walking on them as much as I had been. When I use the wheelchair I will park it and walk 10 or so steps within the kitchen or to the bathroom. My legs are still working very well, I just need to be smart about just how much I push it. I have been using the Xanax since the 5th, it feels so good to sleep so I'm going to use it every day until the 10th then I will just use it 3 times a week. I am doing quite well as I am weaning off the prednisone, I believe it is going so smoothly because I have the vaccine helping me too. In the past when I would get to the point that I felt the need for prednisone I usually would start with 60-80 mg, this time it has only been 40 mg. I personally believe that the lower dose is working because I am also using the SF1019. Since I am now getting a better nights sleep I plan on executing a more consistent exercise routine so I can get my legs and body stronger. Some stresses I can control some others I have no control over. I thank goodness for SSD but one big monetary stress I have no control over is around $800 monthly, hopefully that will soon change. [for fun I play freelotto.com, but I'm not counting on that to actually happen!] Another stress I can control are foods I might eat that appear to cause or at least instigate inflammation. I had not eaten sugar for nearly 3 years but admittedly I did eat some sugary candies during the time I was not sleeping well (more stress). I am not going to eat sugar anymore and stick to more fruit & veggies. I'm still a meat eater though, I eat primarily chicken or turkey, red meat is a rarity. I never really was a coffee addict, I used to drink maybe on cup of instant coffee a day, but I have since changed to green tea. I was not raised with soda so drinking water has always been the norm for me. If I have not returned your call, I will call you soon now that I'm getting more sleep. Have a great weekend! ~ Lisa

02-29-08 I have been experiencing some interesting muscle soreness, from the tops of my big toes radiating towards the ankles I notice this area with every step I take, I used to be able to wear sandals with no back or flip flops, but my feet have not been able to grasp onto the shoe for years. The muscle soreness I feel is in that exact area, between the first & second toes as well as the bottom of my foot in that area! I find this fascinating! I'm also noticing as does my son that I'm standing up a bit straighter, a month ago I would pass the mirror in the living room and I would be a bit hunched over and shuffling more. I can see now that I am standing up much more erect, I am paying attention to the muscle soreness I have been experiencing as it appears to me that each sore muscle I notice corresponds to the new movements like holding on to the shoe. I have not tried the sandals yet, but I sure am noticing the different muscles that are being used while walking! I also noticed this morning that on my left hand, the palm and under side of my fingers are not numb, though the tops of my fingers are still numb and my entire right hand is still slightly numb. That soreness lasted about a week, those muscles do not feel sore anymore but I am walking a bit quicker, I feel more sturdy. I am noticing more soreness in different parts of my calves, buttocks and thighs. I am still not sleeping very well, but since I noticed the subtle changes with the muscles in my legs & feet I'm confident that the insomnia will change one day too, I must just be patient! Have a great weekend! ~ Lisa

02-22-08 I decided to order some Elavil to help me sleep because I have used it in the past and I knew I could have it sent next day by Fed-ex. I received it yesterday and took it last night. I did sleep better but it has been so long since I've taken it I forgot that it also makes my legs feel weaker. I didn't order many so I'll use it up until the other sleep stuff arrives, hopefully within the next month. I just need to practice more patience which is necessary with this treatment anyway. I'll be very excited once I am sleeping better on a more consistent basis I really believe that will help me feel more comfortable in pushing myself more with exercising. I am also trying as funding allows to not eat gluten foods, unfortunately gluten free foods are usually out of my price range. Slowly the wheel turns. Have a great weekend! ~ Lisa

02-15-08 I still have not received this new herbal sleep aide, I wake up about every 2 hours so I'm really tired, it barely feels like sleep...yuk! I may be sleeping badly, but yesterday I found myself walking from the couch to the bathroom and I did not bring my cane with me. That is about 15 steps, I am noticing I am forgetting the cane quite a bit lately. I'll be even more excited when I am actually getting a good nights sleep, which I hope will be soon! Almost forgot this, the other thing I am noticing concerning the walking is the muscles on the tops of my feet & toes, going into the front of my ankles are sore. I think the last time that happened was when I went on a long hike to raise money for MS, I think I was 15/16.? Feels good! Hopefully next Friday I will be writing about how well I slept! Have a great weekend! ~Lisa

02-08-08 I'm so glad to have the website running smoothly again! I am still having some sleep problems, and awaiting a different herbal type of sleep aid I have never tried before to see how that works. However my legs feel stronger than I would have thought, I even have let Daisey in from being outside in the snow and I dried her off while I was standing up, that is new, I usually need to sit down to dry her off. Little subtle changes like that are what I look for. I will be excited once I start sleeping better on a more regular basis then I can exercise even more and get stronger a bit faster. My biggest goal is still to be able to take Daisey for a real walk, though I think in the beginning someone will need to accompany us, probably my mom she walks a lot. I hope to walk a lot too one day soon. Have a great week! ~Lisa

02-03-08 Considering extreme weather changes, my web site crashing and other big stressors in my life I'm holding up quite well. The stress has not helped with my sleep, which is a bit of a problem anyway but I'm still walking around with my cane in the house and sometimes no cane at all. I believe I will start feeling even better now that those stressors are being alleviated! My wonderful son AJ has fixed my website so I can make the necessary updates and he is also going to set up a free personal forum for my website where we can talk about topics on my site and ask questions. That will happen very soon if you would like to participate please send your email address to me at laq640@yahoo.com I'm still pretty tired but with rest I'm sure I'll have the energy to get my site fully updated this week.

Thanks for your patience and to my wonderful son AJ for getting things rolling again! ~Lisa

01-19-08 Even though we have the temperature set inside to 68˚ it reads 65˚ Brrr! That does affect my walking somewhat however I can tell my walking strides are longer, not such a "Tim Conway" shuffle. I am feeling a bit more perky, especially in the morning. The first thing I do is walk with the cane into the kitchen to let Daisey out so she can go to the bathroom, I have bell from my Grandma Winnie that is nailed to the door, Daisey rings it when she needs to go out! On the 13th I did a very big job, for me anyway. The computer was looking very dirty and dusty so I decided to grab the hand held vacuum and carry it into the computer/band room and get to work! I slid from the chair to the floor because I knew it would be easier for me to stretch to the areas I needed to clean. It probably took me about 40 minutes to vacuum the floor and the inside of the computer. The most difficult part was actually standing back up! I think many of you will relate to my description...from my keester twisting to a "comfortable" kneeling position and then grabbing onto the chair for dear life (remember my sarcastic way of speaking) from there standing up twisting back into the computer chair and resting my completely exhausted legs...yikes! I have been pretty good at keeping up with daily stretching, sometimes twice a day, concentrating mostly on leg stretches. I color my own hair, it has been a very long time, months! I again used the generic Nyquil on the 15th, I slept well and colored my very gray hair on the 16th. I forgot what an ordeal this was, I put the towels I thought I needed in my bathroom where I wash out the color then I realized I needed one more towel aaargh! So I had to shuffle back to the main bathroom where the towels are stored about 50 steps, and back to my bathroom, duh! I should go back to writing things on my hand to remind me of what I need to finish a task. I did feel better when I saw no more gray, task complete! My legs do feel stronger, I'm able to push myself a bit more On the 17th I took 18 steps to turn off a light from the couch and I did not use the cane! I am noticing more instances where I will walk short distances without the cane, for instance while cooking and putting something in the garbage, taking 8 or so steps to the garbage can and back to the stove. Little treks like that. This is a slow, slow recovery, I was comparing this to giving birth. I was in labor for 12 hours and it was really difficult and painful, but the end result was great!!! I try to compare those 2 instances in my life, it is going to take a lot longer than 12 hours to get better but I know the end result will be amazing!!! I have been asked by a couple people why I don't just get stem cell treatment, the biggest problem for me with that is I still have 9 amalgam fillings in my teeth, and those must be removed first. I'll just stick to what I'm doing. Thanks for asking...Have a great weekend! ~ Lisa

01-18-08 I will be able to update more thoroughly tomorrow, I need to share this computer with my son who uses it for school. (I keep entering contests for a laptop) But as a quick update, I am walking much better with longer strides in my step. I believe I'm getting around better because I am still sleeping quite well using the generic Nyquil. Doing this has helped me to exercise my body more, which feels great! Sorry for the slow update, but I will have more tomorrow. Cya then!~ Lisa

01-11-08 I did order Montel's book I should be getting it next week sometime. I find the necessary dietary changes difficult mostly because of finances, Gluten free foods are very expensive as I'm sure many of you realize too. Even the making of food makes me tired! Giving up sugar was very difficult I found giving up sugar just was just as or more difficult to give up than cigarettes, I quit the cancer sticks when I was 23 looking back I can't believe I ever smoked! yuk! I talk more about my embarrassing symptoms getting better, "bowel urgency" on this part of my site, the link will save me time & energy. One of my next goals is to exercise more as my sleep improves so I can have the energy to walk into the polling booth on Super Tuesday on February 5th. I know I have received several phone calls from some of you, I have caller ID so I do have your phone #'s. I love to speak with my fellow MSers and compare notes as much as I can but probably like many of you, chatting also adds to fatigue so I will return your calls as my energy allows, thanks for your understanding. My energy is usually better in the morning, that is when I return emails. Emails are generally a bit easier for me to do than chatting, but as I am sleeping better with the generic Nyquil I will probably be able to return your calls on the weekend. Cya~ Lisa

1-04-08 I am very excited for the new year! I am hoping that today my Ambien will arrive, it will not be considered late for another 10 days, so hopefully it will get here today. The past few days I have been downing generic Nyquil like water so sleeping has been a little better, the liquid makes it so I must get up and go the bathroom a few times in the middle of the night but I do fall back to sleep. I'm enjoying the crossword puzzle subscription, it feels good to use my brain and I can see for myself that my handwriting is getting better I can feel my hand being able to control the pencil better! I saw on the Montel show yesterday that he now has an MS book where he talks about dietary changes he has made and how he & his doctor feel these changes have made a difference with his symptoms. I will get the book when I can fit it into my budget, sounds interesting. As I have stated previously I do now believe that the foods we eat make a difference in keeping MS symptoms at bay. Hopefully with this new dietary information that I am seeing lately and with more Neurologists agreeing with that way of thinking that it will become more commonplace for these doctors to suggest these necessary dietary changes, I sure wish I had had that advice from my Neuro's back when I was first diagnosed at 16 and a final confirmation at 19. I'm so glad this information is available now, I change what I can, money gets in the way often since gluten free foods are rather pricey. I'm so grateful that I am able to use the SF1019 vaccine in the meantime, I know that is helping in my recovery! Everything just takes time and I believe that once I am able to take my dog for walks and exercise as I did when I was a younger that I will be able to just fall asleep with no meds as I did back then. Cya~ Lisa

12-28-07 My Ambien should be here next week according to shipment status. I know in my heart my strength will change once I am sleeping better, in my youth I loved to do ab work as well as walking and weight training. I will get back to that once I have energy from sleeping, my balance is even more off when I don't get a good nights sleep and I tend to wobble more. I do still stretch out and do leg lifts, bends and such if I have gotten more than 4 hours of sleep, which 4-5 hours is unfortunately the norm. I have also just recently this past week started doing more crossword puzzles. I now have a subscription so this way I am using my brain and my hands to work on my brain & printing, my handwriting is much more legible according to my son. I am very excited about the upcoming new year! I know I must continue to be patient and also continue to work diligently at becoming better by exercising physically and mentally as much as possible, after all it is up to me to take the reins. It has been a very long 32 years since this all began for me but I know so much more than I did at 13, and there is so much more information about how things like diet can help to change the course of this disease. I personally feel that using the SF1019 vaccine is greatly helping with my recovery, since starting it back in May '07 I have had no exacerbations especially during those dreaded summer months. This was the first summer I can remember that I did not need to take Prednisone to calm summer symptoms, that is beyond exciting to me, no more Prednisone Bloat!

Wishing you a very Happy New Year! ~ Lisa

12-21-07 I still have not received my Ambien so I am relying on meditation and other sleep aids, no great sleep lately. I have not gone back to using the wheelchair though so I am just walking very slowly, I look a bit like Arte Johnson from Laugh-In and his "old man shuffle" or Tim Conway from "Laugh-In"! (I'm defiantly dating myself there!) I would rather be careful than fall down and have to recover from an injury! For me I think it is good to push my limits, but to also know my limits. I 'm sure holiday stresses play a part with the insomnia and other symptoms, I know some other MS patients also feel this way. That "love-hate" relationship, love the holidays and also love/hate when they are over. I would like to say thanks to my MS compadres who have sent me suggestions on natural alternative sleep-aids, I really appreciate your suggestions thank you! I will be so excited when I am able to sleep "normal" on a regular basis, I know this will make a difference in my recovery. I look forward to being able to do "sick" things like simply cleaning the house! I'm also noticing that my handwriting is much more legible, I'm even using some of my blank journals to try to keep up with writing down any changes so I don't forget any MS changes. I also notice that my memory is getting better, I am remembering things like user names & passwords without having to look them up! Subtle changes! I like it!!!

Have a fabulous Holiday! ~ Lisa

12-14-07 Sleep is slowly getting better, but I decided to use my last Xanax last night. I have a lot to do today and I knew I would absolutely get a good nights sleep if I took it. I slept great, the only down side of taking Xanax is it takes my legs longer to wake up, it has taken literally all day for my legs to feel perkier. I am looking into trying Ambien. I do not have any yet so I'm not sure if my legs will have the same reaction, I guess only time will tell. I am still walking with cane only, when I have slept well I have even walked into the kitchen with no cane at all and when I don't sleep so well my right foot/leg is a bit slow. I'm still doing at least some stretching as often as I feel comfortable if I don't feel up to Pilates. I have noticed my handwriting is much easier to do and is definitely more legible, typing is smoother too, not so many errors and quicker. I know I need to continue to be patient, which I will. Have a great weekend! ~ Lisa

12-07-07 My legs started feeling much stronger yesterday even before my injection and they are continuing to feel stronger today. The right side of my body has always been my weakest side, my right leg was dragging quite a bit during the time I had my cold. I've always been very interested in keeping my strength & flexibility up, I've used Pilates and I will be testing out adding Yoga for MS. I have also decided to seriously start looking into having my 9 Amalgam fillings properly removed. This will be costly so the money raised from this past Turkey Bowl will be used for this purpose, it will probably take a few years to complete this process but I feel it is very necessary. I feel I am sleeping better, I tend to sleep 2 hours at a time, sometimes 3 hours, I generally don't get up until I have gotten a rough total of 8 hours of sleep and I remember dreaming, so I often do get to the REM stage of sleep. During my cold I did often take a cold medicine to ensure my sleeping ability, if I feel unable to sleep I will use that from time to time cold or no cold. I do remember the times when I could just close my eyes and fall asleep, this was back in the days where I could actually walk 3 miles or more a day...a long time ago! I'm not there yet, but I'm not a good quitter, so I'll just keep plugging along with this vaccine. I've personally never experienced any other treatment than this vaccine that has consistently helped get me through summer heat and stressful situations without needing steroids to alleviate the weakness I would experience on the right side of my body. I have also made the decision to not go to my brother's house for Christmas Eve, I'm saving my collective energy to celebrate my Mom's 75th birthday on the 21st! I don't know what I would do without her!!! After overdoing this past Thanksgiving I have learned, I am going to be smart about how I use my energy. Live and learn! Have a great weekend! ~ Lisa

11-30-07 I believe that injection did help, my legs feel a bit more sturdy. Though I do have a cold now so that is not helping much. I'll just keep taking my Vitamin C and Astragalus to help get his cold virus out of my body, I'm certain I'll be feeling much better by next week's update. Have a great weekend! ~ Lisa

11-27-07 Wow! It was great getting to see cousins I have not seen for quite a while, it was tough walking, but I did my best. Turkey Bowl day was great!!! I clung onto my mom's arm and walked from the car to the bench and back to the car when the game was over, I did not think to count the number of steps as I usually do but my mom estimated about 1/2 mile total to the bench and back to the car, it sure felt like it! My legs are still recovering, so I am walking slower than usual but that likely will change as the days go by. I'm a bit more fatigued, but this too I'm sure will change my next injection day is Thursday I know that will help me as well! My body does better in the cool weather, so I feel this has helped me out. My sleeping ability is still not great unless I take something, but I have had this sleep problem since 2000 so I don't expect it to get better overnight. I am doing stretching exercises and light Pilates to get my leg strength up. I'll update on Friday! Cya ~Lisa

11-22-07 Happy Thanksgiving! Thanks to the vaccine this is the first time in 2 years that I have had the gumption and physical ability to make it to Thanksgiving dinner! This will not be a full update today, tomorrow is Turkey Bowl day, I was not able to get out of the car last year and walk to the bench to greet the players, but tomorrow I will be at the game! I'm very excited about that and that I am going to enjoy a Thanksgiving dinner today!!! Hope you have a fabulous Thanksgiving Day! ~ Lisa

11-16-07 I decided to take some Xanax last night so I could be guaranteed to get some form of longer sleep. I did sleep but it does seem to take me several hours to actually feel fully awake. I purchased a CD that is based on a principal by Nobel Prize winning physiologist, Dr. Ivan Pavlov. I will be checking that out later today, it is called Speed Sleep. I am noticing more feeling coming back into my fingers, toes, and feet, my printing is better if I don't rush it. I get myself excited about new things I notice and sometimes expect more right the heck now! Then a dose of reality strikes me...It has only been 6 months since I began this fabulous treatment and I do have a long way to go. I will continue as I have been and keep looking for those subtle changes that are turning into more noticeable changes. I also need to remember that it is the holiday season, and that often = more stress, so I need to pay heed to that. I'm even getting holiday cards together to send, I have not had the oomph to do that the previous 2 years, I'm very excited about doing that! It's great to start feeling human again, but I must remember to be patient, I forget that sometimes. I was comparing the time and difficulty of getting in the shower from back in May to now. In May it probably took me 25 minutes from start to finish, it was very difficult moving my legs once I slowly stepped in and out of the shower I do use a shower chair as well as stand. I sat more than stood back in May and I still sit down but standing feels different, I feel more sturdy my balance seems to be better. It is now much easier stepping in and out of the shower not nearly as exhausting. On the balance aspect, when I would go see my neurologist he would have me put my feet together and close my eyes but of course was standing right next to me because he knew I would lean to the right and fall over if he were not standing there. I try that test from time to time and my core balance has not changed, I still lean to the right and would tumble over if I did not open my eyes. I exercise as much as I can, I know I need to push it a bit but am cautious so as not to injure myself...sometimes a fine line, get to know your own body's limits. I know when I don't sleep well my walking ability is not as good, so I pay attention. If you are able, have a physical therapist help you in deciding how much to safely push your abilities.

Cya next week! ~ Lisa

11-09-07 I still have not been sleeping well but have had quite a bit of energy, which I had been seriously lacking of lately. This past Sunday the 4th I slept maybe 2 hours yet I walked into the kitchen from the living room with my cane and stood and did quite a lot of dishes. Yesterday, I did more dishes and realized I left my cane in the living room! It feels great when I forget to use my cane!!! I'm still so excited to be going to Thanksgiving dinner at my brother Brian's house, it's been so long, 2 years my son AJ tells me! I really have a lot of hope for the future now...it's great!!! .....At 1pm I picked up 2 recycling bins, one onside the other that were in the living room, and just stood up and started walking them into the kitchen...50steps!!! Wow, so amazing!!! Stay tuned. ~ Lisa

11-02-07 I am sleeping much better, it depends on the day but I am a young woman and am starting to go through the peri menopausal time of my life, so that makes a difference too. It takes my brain a while to wake up in the morning, so I have been using these "brain" exercises that I found online at Neurogym and they are really helping me to wake up and exercise my brain! I am walking so much better with no cane at all sometimes, my son will point that out as well! I have had so little "spark" the past couple years, I did not have the energy to even make it to Thanksgiving dinner or any other holiday celebrations last year, that was very depressing. Now my body feels so different since I started using this Immunosyn (SF1019) vaccine back in May '07 I'm so excited for the upcoming Holidays and life in general, I'm feeling like I'm going to have a life!!! Also, if you have not looked at Alan Osmond's site lately, you may want to check it out...Osmondms.com the Testimonials page is available again.

10-26-07 I did not sleep well last night but am still walking quite well, just cautiously. I have also been informed that there will be times throughout the treatment where it appears that there are no noticeable changes, it is during this time that the body is healing. ~ Lisa

I began my SF1019 treatment on

May 15, 2007. My symptoms at that time were, very bad balance since 1984 (unable to stand with feet together and close my eyes without falling over), chronic insomnia, I needed to use 2mg of Xanax one hour before I went to bed in order to fall and stay asleep. I was also for the first time in my life having to use my manual wheelchair to get around the house, though I could walk a few steps from outside the bathroom to the toilet. By June the heat was beginning, usually it is time for me to start to use Prednisone to help with the inflammation and help my body work a little better. My right side is usually affected, my right arm gets weak as well as my leg, it drags along. I'm a bit surprised I have not needed to call my doctor for a prescription. In mid July my sleeping had not really changed enough to note, I was still 2mg Xanax, but I was walking more frequently with the cane only (IE: living room to kitchen 45 steps) also, a couple days I was able to lay down and fall asleep for a few minutes. By August 17th I was walking quite well, sometimes 135-200 steps cane-free, but I did not overdo it, my energy level was up and down depending on how well I slept. Some days I actually had the energy to sweep! In September I was under a lot of personal stress and stress also in the past has left me needing Prednisone to help the weakness on my right side. I started thinking back to 1984, that was the first time I started using Prednisone to get through the summer heat, this is the very first time since then that I have gotten through that ghastly summer heat with no need for steroids, I personally attribute this to using this vaccine! By On October 9th I woke up and just had the feeling I could just use the cane and not the wheelchair, it is October 24th and I have not used the wheelchair since. Last night I only used 6mg Melatonin and slept quite well, I woke up a couple times to use the bathroom but I would actually fall back to sleep and have dreams! I am walking more and more within the house, even making laps which is about 98 steps. I can feel my leg muscles working more, I'm careful about over doing it I've learned over the years to pay attention to my body and listen. Previously when I would overdo my exercising ("crossing that invisible line") I would often have an exacerbation (my right side would get weak) and need the steroids to get back to where I started. I have not used steroids since I began this treatment, I love that! I have also been trying to stick to a gluten/dairy free diet but the SF1019 vaccine is the one treatment I have been 100% consistent with, I inject with the vaccine every 4 days.