M.S.Rebel just one of many...
I'm trying to update my very messy website!! It will take a while!!!
You are visitor #
In February '09 I started a Facebook page.
It is really giving my brain a workout if you'd like to visit please click below hope to "see" you there. ~ Lisa
Aaaargh! Not sure my brain will get this right or not...I sure hope the updating info I wrote down is right or this will not work...Kinda worked...at least I have the correct info for uploading...
Geez it has been so long since I even attempted to update this page....I hope at least this time I can add these pics correctly...
Old pics but love that pic of me and my late Daisey dog...I miss her so much! I wish I could go back in time when she had to be put to sleep
and remembered to simply take my Prozac and I would have been able to handle being with her as she passed. :(
Wow I can't believe I have the oomph to type this...Though I am getting tired pretty quickly...that just sucks! I guess I should not complain, it could be a lot worse. My worst symptoms are chronic fatigue, inability to just fall asleep without some type of sleep med. Really shitty short term memory. I look at the above pictures and see I would not have the oomph to go out to eat as I did it the above pic for AJ's moving away party. That is really depressing, I can feel my body slowly fading. I'm sure it will be years before the end comes, but must admit sometimes I'm so tired I don't really care. I would miss everybody and I would never take my life but I don't see my MS getting better without stem cells, that is why I waste my time playing PCH games. Can't hurt. I'm so lucky that Jim does not mind my disabilities though I know he certainly would also love if I did not have any. I could be a whole lot worse. I think I will list my actual MS problems while it is in my brain.
- Chronic insomnia and fatigue...(Think they play off each other?)
- Zero balance that has been gone since about '84 after a huge exacerbation that left me hospitalized for a week or so.
- Numbness from fingers to toes. My handwriting is a joke. (Kinda funny when I write a grocery list for Jim)
- OAB leaves me up at night peeing my brains out, I wear a Poise type pad incase I leak a little.
- I take LDN daily.
I'm probably forgetting something...Hopefully I can remember how to update my website...Knock on wood!
Oh yeah, I am also trying to learn Spanish with Rosetta Stone....Adios mi amigos!
Below are my son's girlfriend, Rachel Lee's pages she is a very talented artist as you will see...she based the paintings on a video game series she loves, The legend of Zelda....Enjoy!
http://rachelseasel.blogspot.com/2013/02/the-newest-series.html?rl= and air head that I am... the pictures at this link are of her art work... Rachel used my son as the model, it looks just like him!!! so fun to see!! and to see him!!! She did an amazing job!!! Please take a look at Rachel's Easel even if you have never seen or met my son, sign up as one of Rachel's followers I have! Very exciting!!!
This is a kooky link from Rachel's brother... I like it a lot gives my eyes a workout! Thanks Ronnie!
blackhawks.nhl.com/2013 Stanley Cup Champs!!!
MS Rebel IndexX 03-09-16 MS rebel blog MS Turkey Bowl XXXVII Stress & Inflammation
My B1 & liver extract experience My HBOT experience Stem Cells Insomnia Exercise & MS
My symptoms My true food intolerances>My Immuno1 bloodprint blood test MS & dietary connection
SF1019 vaccine treatmentI wish this treatment had been approved damn it!!! http://multiple-sclerosis-research.blogspot.ca/2013/06/rebranding-ms-as-dementia.html
My CCSVI Neck Vein Massageadmittedly I keep forgetting to do this...I'm so tired so often and messed up the pics!! aaargh!!
Hemp seed oil study and MS improvements Very interesting info!! You tube video on Hemp oil
NEW!!! CNNís Sanjay Gupta Comes Around on Medical Marijuana
Brian "Coach" Quick's Facebook page
(T-Bowler supporter JBspecialties.net (T-Bowler supporter
When I walk a documentary by MS patient Jason Da Silva Disabled vet makes amazing recovery He does not have MS but truly inspiring!
http://contemporarymedicine.net/ This is my doctor office I see Dr. Malik http://www.thecompounder.com/ This is where I get the B1 & liver extract
Dr. Terry Wahls SPMS patient cured herself Minding my Mitochondria Dr. Wahls lecture
Paleolithic diet http://www.digitaljournal.com/article/356292
Dr. John McDougall Dr. Swank Roger MacDougall patient who used diet for MS during his life
. Dr. Bryan Mitchell, DC my awesome Chiro http://www.overcomingmultiplesclerosis.org
MS Diet foods list from MS Diet for women..though it seems logical to me that men can use this diet too for goodness sake!!!
Test your food intolerances hair analysis Human Bloodprint for food intolerances
http://www.stemcellmd.org/treatments/hbot This Penn study reports HBOT use increases stem cells already in the body by 8 fold!
http://www.youtube.com/watch?v=cJtCZx-4W8I&feature=player_embedded Can you imagine the concept of listening to your patient???
http://www.hbot.com/ The oxygen revolution by Dr. Paul G. Harch
http://drcranton.com/hbo/strokestudies.htm http://www.hope-connection.com/overview_drbiddle.PDF James Biddle, MD
http://www.mstherapycentres.org.uk *Long term HBOT retards MS progression This link shows MRI's before and after HBOT
http://drcranton.com/hbo/HBOT_Increases_Stem_Cells.htm wow!!! http://www.emsahealth.com/documents/MultipleSclerosisStudy.pdf
http://www.hyperbaric-oxygen-ca.com/ Dr.Saft Does HBOT increase free radical damage? Something my Neuro was concerned about
Summit to Sea This is the brand I use, at the moment it is the shallow dive model http://www.hyperbaricoxygenca.com/conditions/multiple-sclerosis-and-hyperbaric-oxygen-therapy/
http://clinicalsolutionsinc.com.sprite.serviv.com/home/ My first treatment for free thanks so much! http://www.midwesthbot.com/neuro.php Bolingbrook
http://airtightinnovations.com/products.html Scott Shannep was very helpful!!! http://www.healingdives.com/1901.html
http://freethechamber.com/ MS & HBOT History - vascular theory http://www.newtownehyperbarics.com/home.html
09-04-15 OMG has it been long enough since the last time I updated? My lord I have had this crappy disease for far to long!! I could not remember how to update....that has been severely depressing. However the people at www.web.com were incredibly helpful. I know I need to use my HBOT machine much more often. I will have my brother Brian write down his experience that is proof it does work. I could not explain it correctly. Now if some energy could come back because I have a shit-load of updating to do! Pardon my language if that offended you. Depressing to see it has been 2 years!!! since I last updated....sucks!!! I guess little by little...
I think first I will start out writing down when my MS actually began and the first symptom, then how I am now. Sometime I will ask my Mom to film me walking and such so you can see for yourself. As I remember, my very first symptom tough I did not have a clue what it was, I thought it was just there to help me relax. My parent divorced when I was 10 which for a little kid is tough. Around that time 10 or 11, I never wrote it down I just remember it was around this time. When I went to bed I had this feeling like little ants were crawling up and down my arms, that is why I am presuming that is when my MS began. Next up was when I was 13 with blindness in my right eye during thee summer. My vision went from 20/20 to 20/70 and when the weather cooled off my vision went back to 20/20. When I was 16 I had double vision for the first time and missed the first month of school, that is when I was to learn Spanish. I was never able to catch up so I dropped tat class and that is why I am working on learning it through Rosetta Stone. So many between now and then I could not count, though when I was pregnant with my son AJ I did not have one symptom, though after I was done nursing him it came back with a vengeance! I sure wish I could go back in time I would have not listened to my Neurologist at the time who told me the Swank diet would not help. Though for me there are still foods on the Swank Diet, Wahl's etc. that my body cannot tolerate. Even some healthy foods (lettuce, tomatoes, blueberries, pineapple, dairy just to name a few) I tested myself by eating some of those foods and guess what happens....exacerbation EVERYTIME! Today at 53 I can walk to a degree, I need a cane and an arm because I have no balance from all the lesions to my cerebellum. I also literally cannot fall asleep without medication because of lesions to the PONS area of my brain which is nearly next to the cerebellum.
As far as meds supps I take. I have been using LDN for several years it appears to help... Diet seems to help the most. I will never try another MS drug after using a med, it was not ABC's I can't remember the name of it right now. but after using it I guess I had seizures (not flailing around type), my awesome son could see something was not right with me so he called 911. That must have been scary for him, I do not remember any of that time...nothing. Creepy. OK I think that will do it for my update....it's been so long I hope this works.....
10-01-13 I can't believe how sucky my brain is...I'd say most of it is because I still sleep like excrement!!! Still getting up every 2 hours or less to pee! Gee that Interstim is working just great....NOT! I need to make another waste of time appointment, but waiting for this weeks 80 degree heat to pass. I have no more steroids left and my legs are still a bit weak because of the summer heat. "I love looking at the picture above...at least it makes me smile!" Doctor's not so much! I should not really complain, it has been at least 38 years with this crappy disease, but I am so fortunate to still be able to walk to some degree. I use the WC daily in the house to get to most rooms, my legs are not that strong...yet. I will keep trying especially now that the cool weather is here to stay!!! I have not been able to use my HBOT as much as I need to, because of my own stubborn stupidity! I thought gee why not get myself in the HBOT for 1 hour twice a day....such a stupid thing to do! I am not healthy enough to do that!! I should have just let Jim get in for an hour a day, my bladder for the most part cannot make in for 90 minutes daily. I can see too I'm kinda screwing up my website! I have missed a lot of HBOT!
05-19-13 Oh I hope this works! I have some new information about alternative antibiotic treatments for treating the very possible MS virus. Please refer to the David Wheldon links below. I'm going to try to publish now, but not holding my breath. Knock on wood! And lets hope the Hawks can get it together! Go Hawks!
05-12-13 Happy Mother's Day! I keep screwing up my site, I hope it works this time! I keep reading more interesting info on what this disease might actually be caused from...So I am being tested for the Chlamydia Pneumonia virus. The information's really fascinating, it has nothing to do with sex at all, it is an airborne virus. Apparently CP-MS was being treated back in the 50's with antibiotics and even better information now. This man's (David Wheldon) wife has MS and has successfully used antibiotics. However she is much earlier on than I am, but I would like to see if it makes a difference over time...lots of it I'm sure....years. But I am game to give it a go, after 38 years of this crap why not? I am also still using the coconut oil and my brain does feel more clear, and not just to myself, others notice too. http://www.davidwheldon.co.uk/ms-treatment1.html This next link is about his wife's experience... http://www.davidwheldon.co.uk/updates.htm Happy reading! Never give up!
05-04-13 OMG!! Did that take long enough??? My brain is working again..not perfect but I remembered how to get this site going again!!! :D I was seriously feeling like I had Alzheimer's, it was scary, my mom and Jim noticed I was really having a horrific time finding simple words...it was really getting to me. So my mom found a link from a friend about an MD who's hubby had Alzheimer's and she started giving him coconut oil starting at 1 Table spoon daily. I started that April 22nd and am up to 2 T daily...yeah I know it is 100% fat but something is working and this is the only recent change. I'm going to stick with it for now! My brain feels more clear, not perfect..and I'm losing weight of all things!!! I understand it boosts my metabolism!!! http://myhealingkitchen.com/featured-articles/doctor-reverses-alzheimers-with-coconut-oil/?az= I absolutely do not expect these treatments to make me good as new, after all I have a lot of lesions in my brain, those can't just heal completely, it's been way too long, but I will take what I can get. Though I probably should cool it, I am so excited that I finally figured this out and this time I have written it down and I will back up my files..duh! I can tell I could easily overdo it because I a so excited! So, I am only going to update this page...but this feels so great!!!!!!!!! I have so much more new stuff to add..Intestim a bit of a flop...we shall see! My friends Lucy & Fran sent info to me about Chlamydia pneumonia & MS..it has nothing to do with sex. My first symptoms were at 10 so I know that has nothing to do with it... it's a air born virus and if you have inflammation in your body at that time it goes to that part of your body. The links below explain very well if you would like to read about it. I gotta say HAPPY 80th BIRTHDAY to my Dad! Okay it is time of me to stop and go rest! I also have to say a big Thank you to Jim, he helped me to uninstall FrontPage so I could reinstall it!! He is so great too because my disability is not a big deal to him, he is just happy to see me getting better and being here to be his friend again. I can't believe how lucky I am! I love him so much! Have a great weekend! ~ Lisa
03-06-13 I'm so excited for the 14th!!! I will be having he InterStim treatment for my OAB!! It will be so great to not be in the bathroom every 2 hours day and night!! Maybe even start feeling human again!!! I know many of my MS friends know what I am talking about. The only bad part is I will not be able to use my HBO unit for one month because after the InterStim is placed in I cannot bend or twist the waist until the incision has fully healed. So that will be interesting, but once it is healed up I can get back in! Yeah!! I am just completely exhausted lately with such lack of sleep for nearly 2 years at least, I have not had much gumption to call people or even FB etc. That is why I am so excited to get this treatment done, I was able to test it for almost 2 days before the lead pulled out :( . It works great it I was able to sleep for 4 & 5 hours in a row!! I really think this will be life altering in a really great way!! Finally be able to get off these damned steroids! I am grateful that they do help me recover when I have exacerbations but they have certainly been bad for my bones. Jim is such a good trooper too. It sure was nothing like this when we were dating as teenagers, I used to walk to his house about a mile & 1/2 away and back again to my house! I can't wait to start going for walks with my Jimmy, I always loved when we would walk and he would hold my hand!!! For those living in my area, remember Old Chicago?? We did a lot of walking and hand holding there!! Great memories!! Some day I hope I can walk Daisy a block to start with!! I know it will happen! all in due time! My legs still work for the most part even though I do use the W/C in the house often since this past summer, I was walking pretty darn good with the cane in the he house. Then the sleep stress brought me to steroids again. I guess only time will tell. I am so excited about Thursdays treatment so that chapter can begin! I think I have also found an MD who actually uses HBO to treat her patients, though she not Neuro maybe she will know of one. ?? Stay tuned! My best to all~ Lisa
03-03-13 Wow can't believe it has nearly been one year since I updated this page! I guess I tend to update my blog more with not so much energy from getting up all night peeing ! aaargh! I am of course still following the dietary measures and also using my HBO unit. Though with my OAB I don't often last the suggested 90 minutes. I will be having InterStim treatment performed on March 14! I am so excited about that, this having to urinate every 2 hours is getting really old and exhausting! Though for one month I will not be able to get into my HBO unit because it is like sleeping bag too much bending. I cannot bend or twist at the waist for one month after I have he InterStim implanted. But it will all be worth it in the end!! If you have a moment please look at my son's girlfriend's art work on the links at top of the page, she is very talented!! It is 10:25 am CDT...in about 1 hour the Blackhawks play on NBC again against another arch rival the Detroit Redwings! I usually can only listen to the games unless it is on regular free TV so I am excited to see today's game! Go Hawks!
03-17-12 HAPPY ST. PATRICK'S DAY! Today was day #30 with the HBOT treatments. It has been very interesting, I did not always get in for the 90 minutes that was suggested by Dr. Saft, some days it was just not possible. I had a cold for 6 days and I did not get in, my head could not have handled that! The love of my life, is still sticking around, I am beyond the moon so happy he is staying around despite the MS! We get along so well, it really feels like high school again, well except that we are both 50 and that sure makes things a bit different. My MS has certainly advanced from what it was in high school, pretty much non existent in '80. It is certainly showing it's ugly face now. Although it could be much worse, I should not complain! Too many of us have not made it at all like my late friend Scot who didn't even live to 40. I totally believe diet plays a key roll, Dr. Swank was right when reading about his diet when I was a teenager, I just didn't believe him since my Neuros all said diet does not make a difference...BS!! I guess they need to wake up and realize the MS drugs don't do jack! I feel teaching them will be up to we patients! I'm not glad Dr. Wahls has MS, but maybe in time her fellow doctors will listen to her that diet really does make a difference. Of course that will all probably take, study after study in order for them to believe it. I personally am just going to listen to my blood test & hair analysis for foods that my body shows I might want to think about staying way from. I'm not a doctor, not even close but I personally feel comfortable listening to my body. Never give up! ~ Lisa
01-23-12 Well today is the day I am presuming the rest of my HBOT will arrive. It was delayed by the snow it was in NV when we spoke with Dr. Saft this past Thursday. I am so excited to get rolling with this treatment and then to show my MRI pictures before and after the treatments on my website. I will get an MRI tonight to see if there is any damage from the seizures from the IVIG treatment. I want to see my brain image now before the HBOT treatments. I had seen MRI changes before and after HBOT after just one hour, that link is above "Philip James" link. I want to get cookin'! Dr. Saft wants me to have 90 minute sessions 6 days a week and report any new sensations of healing. My short term memory is horrible it's embarrassing. I feel so tired all the time, but when I had that single 90 minute treatment of HBOT a few months back I had so much energy I am so hoping I will have a repeat performance with the energy I felt. It's a shame that Medicare does not cover HBOT for MS, in England they have a foundation set up specifically for MS patients who have no finances to have the treatment done to actually have it performed. I just read that in a book, The Oxygen Revolution. This is the best book I have found with information on HBOT treatment. I have no idea on how to set up a foundation like that, maybe if this treatment gets my brain working properly I will be able to figure that out. I must admit I would want to help MS patients like myself who have had this for 20 plus years. I do believe diet is key especially if you get it at the start, but for others like myself the damage has been done and we need something that can help heal that damage. It appears HBOT or stem cells are the answer. I realize I am simply a high school graduate, but this disease sure has been a learning experience. I would really like to help my friend Connie to be able to have HBOT one day, her MS is very bad and she lives in the heat of Louisiana. I would like this years Turkey Bowl to be used for that purpose maybe this can be a start to a foundation like England has. Never give up! ~ Lisa
01-14-12 Happy Birthday Brian! I love you! I am still feeling a little tired from my seizure fun though I have not had further ones. I have added more HBOT info above. I will not accept a new neurologist who will not go along with me on HBOT after seeing what I have seen help other MS patients. I can't wait to start showing my results here as well. Soon enough...stay tuned and please spread the word. also don't forget diet is key to keep this disease under control, but I see HBOT as being able to heal the many lesions in my brain. I have never been this happy in my life, I feel truly hopeful. I can't imagine ever being completely healed up but I know some lesions will heal. This is exciting! Okay let me be a bit more nauseating... another high school sweetheart story only after 50 years...http://screen.yahoo.com/high-school-sweet-hearts-reunite-after-more-than-50-years-27858762.html I'm just nauseatingly happy! I will have another MRI this week because of the seizures then I will have the HBOT this week when it arrives and then another MRI to see if there are differences. Knock on wood! ~ Lisa
01-09-12 I still do not remember anything for a few hours after the IVIG, I guess it was worth a shot if it would get me off of prednisone. The best treatment I ever had that replaced steroids for summer heat was a sub q injection I was able to use for free thanks to the turkey bowl in '08 the Immunosyn SF1019 vaccine, but that will never happen again. I have hope with the HBOT, but as always only time will tell. I am able to walk with a cane and an arm, my sleep is horrible. My memory is pretty crappy as well, but I remember when I had the one free HBOT treatment I had tons of energy for about 2 days I would love that again. I should be finding that out this week when my portable HBOT arrives. My computer recently crashed so it is going to take me a while to get things up and running properly. I am having problems remembering my user name and password for publishing my website....aaargh! I need to see if I can find where I wrote that down..duh! Jim is still hanging around with my disabled body & brain, nothing like in high school when they worked so much better. I'm so glad he is in my life again, I just feel this was meant to be at this time, not in high school. Other than the MS I am so happy. I do need to have another MRI done to see the new damage from the seizures....bizarre. I will be displaying all of my MRI images on my site to see the changes that could likely happen after the HBOT treatments. This link shows some lesions disappearing after 1 hour of HBOT. http://www.mstherapycentres.org.uk/Philip_James_HBOT_2005_Paper.pdf I'll update as soon as I can! Knock on wood! ~ Lisa
01-04-12 Well this has been interesting and not in such a good way, physically anyway. Dr. Iocob had me trying out IVIG treatment. It seemed to be okay for a while not any big help like the HBOT felt to me and then I started having amnesia. Scared my son, to death because he was the one that was with me. He did a great job in calling 911 and calling my mom & Jim, I still do not remember the ambulance ride at all and that happened on December 28th, I started the IV on the 27th! I can guarantee I will never use that crap again!!! I should be getting my HBOT machine probably next week, it has been pretty crazy around here since my bit of fun with IVIG. I can't believe I still cannot remember being in the hospital, especially for that one day, I don't remember seeing my son, my mom, or Jim and I don't remember getting a kiss from Jim...nada , nothing! I apparently was having seizures, but not the kind that you can plainly see. That was very creepy and I'm still exhausted. I also realize just how much I love Jim and that he loves me as well, that has been the best thing of this creepy experience! Just hearing him say I love you too! My legs are still quite weak, back to steroids for a bit. I'm going to try to get my website up and running today, though I am still really tired...hope I don't screw it all up! I'm probably making my family ill with how much I go on and on about how happy I am that Jim is back in my life. I just can't believe how fortunate I am, I just need the HBOT to help me out in getting better. I do not believe at all that I will ever be completely healed up, that seems absurd...I have a lot of damage to my brain, I've seen the lesions for myself. I do believe many lesions will heal, but not all of them, that is 36 years of damage to this brain! I absolutely believe that if I had been led to diet as the cause when I was 13, things could be much different, but I will never be able to prove that at this late date. Thank goodness for Dr. Wahls, we need more doctors like that! Well, I'm exhausted time to try to sleep again. Knock on wood I don't screw my website up! I have a lot to say especially when I get o having daily HBOT treatments done. Never give up! ~ Lisa
11-04-11 I am so glad I found Dr. Iocob he tested me for something new that I never heard of. NMO (Neuromyelitis Optica) or Devics disease. I will have the blood test results in 2 weeks. It is really interesting and because my MS began with Optic Neuritis in 1975, blindness to my right eye during the summer heat and it resolved with the cooler weather. I have continued to relapse and remit since then which is a symptom of MS but also of NMO which can also be treated with diet. Which I have been doing since having that blood test that the Turkey Bowl raised the money for nearly 3 years ago so I could see for myself if diet helps. This link shows the blood test of my 29 food intolerances which has seemed to help if I avoid those foods. I would notice a difference when I would eat the offending foods. Now I will be interested if I do have this disease as well and to see if this diet helps as wellhttp://www.guthyjacksonfoundation.org/pdf/Diet_NMO.pdf . However the damage has been done, I have many brain lesions and my bran has shrunk a lot, and almost forgot I have osteoporosis! Big shock with all those year of steroids! I have seen for myself before and after MRI pics of lesions being healed after HBOT treatments so that is why I would like to give it a try. I don't see any other treatment hope at the moment. I don't expect to ever be all better, butsimply better would be nice. I don't care if I never drive again but I'd like to be able to take my dog for a walk. I have hope for that with treatment that could actually happen. I at some point would like to actually show one of my lesions healed from HBOT with before and after MRI pics. That is my newest goal so others could see that it can happen. HBOT is used in the UK and other countries as a regular treatment for MS...what the hell is with the US? A bunch a BS is what it is! That is why I would like to show any lesion healing on my website. Of course unless one has insurance that covers HBOT you are simply SOL. I will forever be grateful to my brother Brian and friends from the Lisle Senior High School class of 1979 for their help, otherwise I would never be able to give this a try. I cannot say thank you enough to them! Coincidentally my high school sweetheart is from that same great class, if I have not mentioned him enough times! :)
Have a great weekend! ~ Lisa
10-23-11 I'm so glad the heat is gone, but the damage is done. My legs were really, really weak this morning. I have a bone scan set for tomorrow at 1:30, and MRI's set for Halloween! I really like my new Neurologist. I chose him specifically because he also specializes in sleep medicine, and vascular. I am more interested in the sleep part, I understand that some MS patients who have had the CCSVI treatment have had some relief with insomnia. I also have read that most of these patients have had to have this treatment done more than once, and some of those still have no symptoms relief. I personally will not use the CCSVI until it has been perfected, I have no gusto for that kind of screwing around. In the mean time I will stick to the dietary changes I made in March of '09. I don't know if anyone remembers hearing a thought about MS being more than one disease, I remember that in the beginning of this crappy disease when I was a teenager in the 70's. So, maybe diet and vascular are the culprits of MS. I'm sure they will have to study it to death, which does make sense because I have read of patients who bled out during the CCSVI. I'm having the best time I my life being back together with my high school sweetheart, and am unwilling to risk that. In my family we do have a history of vascular, mainly varicose veins. So this would not surprise me if this is the case for me as well, I'm just not willing to risk it until the procedure has been perfected and does not need to be done over and over again. After 36 years with this crappy disease I have seen the lesions in my brain and seen the results of the HBOT with some MS patients. I would love to see them disappear, though this will probably need to be done for life, that is why the game is being played to raise money for a home HBOT machine. I am fortunate to have a touch football game that is played in my honor by my brother Brian and friends from the Lisle High School class of '79, I can never than them enough! I would really like to see for myself the before and after pics of my MRI's to see if the lesions disappear as they have for some of those who have had this treatment. Though I have had MS for much longer than most patients I have read about. That goes for CCSVI as well. I will never give up, be annoyed yes, it has bee so damned long! My legs are really weak today, my new doc would like to put me I the hospital for an IV treatment that is not steroids to see if it will help me get better quicker. Steroids have always worked so well, but not so much now. I'm game to try it...what the hell. Knock on wood! ~ Have great Sunday, Go Bears! ~ Lisa
07-20-11 Having a 90+ heat wave here in the Chicago land area, yippee! It is definitely kicking my ass. Today for the first time ever, I fell out of bed and felt like that commercial, I've fallen and cant get up. But I roused my son and he came to my room held my wheelchair steady , I was then able to stand myself up and get into the chair. I am having a bit of vertigo that did not help. So I am taking 80 mg prednisone, 600mg DHEA which I will probably add another 200mg. and probably up the prednisone to 100mg. I look like a bloat fish but I know that will go away when the steroids are done, but we have August to go yet. Yahoo! This is my game plan in a nutshell. I think Dr. Wahls is awesome and I hope more MS patients will follow her lead, I am following to a degree. After I had that blood test that showed certain food intolerances (29) I have, I stopped eating those foods, that has made a difference but have a long way to go it has only been 2 1/2 years. However I must realize that Dr. Wahls has had MS for a much shorter time than I, I have had this for 36 years. I have many lesions up there in my brain. I also am trying to represent patients like myself who are not wealthy and probably have lesions that need to be repaired as well as changing their diet. I simply cannot afford many of the foods that are recommended so I just have to adjust for instance, I can only afford hydrogenated peanut butter and regular eggs which are on my list of foods my blood test showed I can eat. I realize I am fortunate that there is a touch football game played in my honor every year, I know most people are not that fortunate either. I would just like to try to show some reality about if HBOT treatments really do show lesion repair after a certain amount of HBOT procedures. My plan is to show these results here on my website and list any changes I feel after these treatments are done. I think we just need to try to figure this out the best we can for ourselves, do our research, consult our doctors, maybe even teach them, and try to find a way to help ourselves get better, and be very, very patient especially if you have been dealing with this for a long time such as myself. I am looking into being able to afford an HBOT from Healing Dives, it would be so much easier to be able to do the treatments at home. We shall see. So that is my game plan, I'll be knocking on wood a lot! Stay cool and never give up! ~ Lisa
05-03-11 I stopped using Ampyra because it was giving me facial spasms, yet another crappy drug! So, I will stick to diet and the occasional Xanax so I can sleep, that is my #1 worst symptom, that sucks soo much, if I could just sleep I think I would have an easier recovery! So I am still using the Alpha Stim, which does at least does seem t help with anxiety but only if I can sleep. I am going to be using a concoction of different juices that is suppose to help clear veins somewhat like the CCSVI, ?? That will just be a guess since I cannot afford to get the tests done that actually show these blockages. I have always had headaches for as long as I can remember and do have at least one varicose veins, and many family members who have varicose veins, so I figure it is certainly possible. ?? I was just told about a supplement that is also supposed to help with vein clearage from another MS patient whose docs are n Mexico. I have just ordered that today, I will try whatever is available. http://www.swansonvitamins.com/SWU310/ItemDetail?n=0 What the heck! Have a great day! ~ Lisa
02-14-11 I am using Ampyra now, it is helping me to move more smoothly. I will be receiving an electrical stimulation product for my brain this week thanks to the Turkey Bowl, I will be using Alpha Stim I will also start yet another page to keep track of how this product works from the beginning (it is not he above link). It apparently helps with insomnia for some, I would really like to find out if I might be one of those people. I am so tired of Xanax, it helps me a lot but also makes my legs really weak, which I surely do not need. I do realize I am quite fortunate with my MS in that I am able to get around my house with my cane quite well. Though at the moment, my ruptured disc is not helping that. I can also see my site is a bit confusing, I really need to fix that. My back hurts quite a bit while sitting at the computer but when my back is feeling better I promise I will fix things. If any of you have any suggestions please let me know. Shame on me for not having he Turkey Bowl link fixed! My brain does still suck, knock on wood for the Alpha Stim to help! I need to update my symptoms, etc. I'm not a big Valentine's Day person, but Happy Valentines Day! An old boyfriend and I have been in contact, that has been nice. Have a great day! ~ Lisa
11-28-10 Thanks so much as always to my brother Brian and friends from the Lisle Senior High Class of '79 who have been playing a touch football game in my honor, this year was Turkey Bowl 35! I'm not a good quitter, and have been looking into a new treatment that uses Adipose cells (Fat!), how convenient, I have plenty of that! LOL I am doing more research and put links on my website. There is a clinic in Phoenix and the cost is rather good, $8950. I am seriously looking this being next treatment I will use. I truly love these guys so much for helping me to use different treatments that I cannot afford on my own. I am really hoping this stem cell treatment will be a success along with and electrical stimulation and of course the dietary changes I have been using since 'March '09 (thanks to the Turkey Bowl!) Next year I hope to be walking onto the football field to thank all of the players myself! This link is to Brian's Facebook, Turkey Bowl page.
http://www.facebook.com/msrebel#!/ Thank you! Thank you! Thank you! ~ Lisa
11-13-10 This will be a big doctor week, I had another blood test to check my thyroid levels and will be having an ultrasound to my thyroid on Tuesday. Then I go to my hopefully new Neurologist on Wednesday and back to Dr. Ahmed on Thursday to hear about my results and get a pap smear! That's always fun...not. Have a great weekend! ~ Lisa
11-07-10 This thyroid crap is making me nuts! Insomnia is still with me, some of the doctors believe my thyroid has a lot to do with that however I have had horrible insomnia starting in 1998. So is it a lesion in my brain? So confusing. Right now I am using 2 mg Alprazalam the bad part of using that is it makes my legs weak. Tonight I will take 1 Ĺ mg to see if my legs are less weak. I've been so used to only getting 1 or 2 hours of sleep, that so sucks! If that does not help I will go back to trying Temazepam and play with the dose to see what works best and if it makes my legs feel as weak as theAlprazalam does. I need to sleep regardless, this is crazy! I really like my new doctor, Dr. Ahmed. She really paid attention to what I was saying. I will also be making an appointment tomorrow with a new doctor for Neurology. He is like Dr. Ahmed who is a DO only his specializes in Neurology, Dr. Bajwa. The last Neurologist I went to Dr. Zhang stared at the computer most of the time, that really irked my mom. So she is fired. I am hopeful about Dr. Bajwa since Dr. Ahmed suggested him. As always I guess only time will tell. For now I will stick with my dietary changes and pray slumber will come more easily. I am also going to begin a better exercise routine today. Have a great Sunday! ~ Lisa
08-10-10 Had to have a blood test yesterday to check on my thyroid levels, the adjustments seem to kind of be working but I still feel that pressure in my throat. I have some relatives who also have some thyroid problems and they need to have blood tests on a regular basis. No biggie. But I still feel great and so clear headed since I stopped eating those foods I tested positive to as food intolerances. Feeling great in Lisle! ~ Lisa
08-06-10 The adjustments continue with the thyroid meds, trial and error. I'll just have to keep paying attention to how my throat feels. Hopefully this new level will be it, only time will tell. I am still amazed at the amount of energy I have and the only treatment I am using is avoiding those 29 foods. I will be so excited to get he results back from my hair analysis, hopefully next week. My brother Bart is going to have this hair analysis done as well, he does not have MS but is having some aggravating skin symptoms and the docs really don't seem to be helping so I convinced him to give this a try. I will list his results here too if anyone else is interested in reading about it.
Have a great weekend! ~ Lisa
07-30-10 I am finally finding the right level of meds for my thyroid, yahoo! I am still noticing changes with getting the feeling back in my hands and feet. With my feet I am noticing feeling the cold tile floor in the bathroom more on my left foot than my right foot, which I guess makes sense since the right side of my body is more affected than my left. I will continue with avoiding those foods the blood test I had done showed I have an intolerance to. I will be very interested to see the report on my hair analysis for food intolerances. I just got thinking, I would like to compare the results as much as possible because t is much less expensive than the blood test and I know many fellow MS patients who have difficult to find veins and would definitely prefer cutting off 5 hairs and sending it out. I will be honest in letting you know that because of my financial situation I asked the people at Test your intolerance USA if they would be willing to do my test for free and in return I will show my results on my website. Here is a copy of that email so I do not misspeak;
Thank you for your enquiry. As you can imagine we receive numerous requests for free tests and it is not possible to satisfy everyone's request.
I have decided on this occasion to forward a pack for you to complete your hair sample and receive your test for free in return for it being published on your site. I would just give a couple of warnings about comparing it with a blood sample test.
Firstly, depending how long it is since you received your previous test, intolerances do change, unlike allergies. This depends on your immunity level etc.
Secondly it is now finally being proven that samples from a hair sample are much more accurate due to the length of time a hair sample remain live with full data. A blood sample commences to die the moment it is removed from the body and is normally dead within 2 hours. A hair sample is estimated to have 3 months of live data for every 1/2 inch of hair. When sampling body hair it is estimated even the shortest hair has 12 months of data. It is for this reason that hair sampling is now the preferred method fordrug and alcohol sampling used by the courts.
I hope you find the results both interesting and useful.
I am feeling so darn good, it's almost eerie. It kinda makes me sick to think if only this testing were around 35 years ago, I really think my MS would not have escalated this far. Of course I feel I should not complain too much, I am still able to walk with my cane unless the weather turns super hot then it is time for the wheelchair. The only MS drug I would use if it were FDA approved is that SF1019 vaccine that I was so fortunate to be able to use for 13 months thanks to the touch football game my brother Brian and friends play in my honor. Some other family members were able to help too until the economy changed. Oh well. It really helped a lot, it got rid of my vertigo and I had tons of energy, I miss that! Hopefully it will be approved soon, but in the meantime eliminating those 29 foods from my diet I know is working, at a snails pace but I can wait. This is the most hopeful I have felt in decades about having some degree of recovery. My hair analysis is being sent out today, it goes to the UK so I'm not sure when I will receive my results but you can be sure I will list them here. I realize I have become obnoxious in speaking about the food intolerances but it is difficult for me to not spout on about it now that I am truly noticing changes. I wish I had written down all the dates I would have that "something feels different" feeling so I could try to see if that feeling seemed to equate to some type of recovery. Geez did that even make sense? I am noticing the fog lifting from my brain, and just now sitting at the computer I can feel my butt feels like it is waking up, yeah that sounds a little weird too. I'd say my soapbox will be food intolerances, I like facts and it appears to me that blood cannot lie, nor can DNA and if those tests show I have certain food intolerances it seems logical to me that I should try to stop eating them. If I had an allergy to any of those foods I would have to stop eating them or they would kill me. This link can explain it much better than I ever could. http://www.foodcanmakeyouill.co.uk/index.html For me this is the most difficult treatment I have ever tried, but now after 16 months of elimination 95% of those foods I am absolutely seeing differences and will stay away from those foods as much as possible. I had a couple slices of pizza a while back and everything on that is an intolerance for me. Cow's milk, yeast and wheat, so that cannot be a regular occurrence. It's a bit easier to handle now that I am seeing results, though very slowly, I notice them as well as my son and other family members. My energy level is obviously better because I actually am excited to do the dishes! My sleep is still not great (3-5hrs) but I still have energy. My energy was much better when I was able to use that vaccine, but since that is not the case I will just stick to the food elimination since that appears to be helping. I wish my friend Scot had been able to have this testing maybe he would still be with us, he didn't even make it to 40 and he was a very slim man. It would have been interesting. My hope is that some of you will check into this information and seriously look into having this hair analysis test done so you can see what foods your DNA shows you should probably stay away from. For me I know the Neuros I saw told me food has nothing to do with MS, I wish I could show them the proof I have that it does. I believe now some Neuros are changing their thoughts about that, like Perl Health (Dr. David Perlmutter). I like his thoughts about HBOT as well in circulating the stem cells that are already in our bodies. However again, HBOT is not covered by Medicare for that type of treatment and unless a patient has insurance that covers that you are SOL. (I think you can figure out that acronym) LOL Okay, I think I am done babbling for now I hope you find this information helpful or at least interesting. Never give up! ~ Lisa
07-06-10 I'm still dealing with the hypothyroid, my energy level went down substantially. However, I really feel my diet over the past 15 months of avoiding the foods my blood showed an intolerance appears to be paying off. I know that is simply my opinion but I have been experiencing some pretty awesome changes. A couple days ago I slept extra badly yet I could feel my hands & feet waking up! I remember having the feeling sometimes when my hand or foot would fall asleep and after a while I would shake that limb and it would start waking up, that is the sensation I am experiencing.... I like it!!! I have a long way to go and I do realize I may never get my balance back, but there is no doubt that I am experiencing some amazing changes. I will continue to stay with avoiding those foods, and see what else happens. My brain fog is lifting, I can't believe how clear headed I feel. I understand that Hypothyroid can cause fuzzy thinking, however that brain fog has been in my brain for years...? This dietary change is not particularly easy, but I am so glad I made the change. The Neurologist I saw when I was hospitalized for vertigo back in 1984 told me diet has nothing to do with MS, as did the young new Neuro I saw briefly about a year ago. All they suggested were the ABC drugs and other garbage that does not work, I will need to presume that kick backs play a role in that! How could they make any money if we just stop eating foods that our bodies cannot tolerate? I've had MS since I was 13, I guess I've gotten a bit bitter. What happened to do no harm? I will elaborate on symptoms I feel relief form on my blog if you would like to read more.
Never give up! ~ Lisa
06-22-10 My blood test results showed I have Hypothyroid. Where my T-3 hormone levels are unusually low so I am now taking a compounded treatment to raise those levels. It has been less than a week but I have an abundance of energy and have even lost 3 pounds! I love that blood does not lie, I trust those tests quite a bit! I know I go on ad nauseum but for the past year I have been using diet as my MS treatment, staying away from those foods my blood showed I have a intolerance to. I'm getting around so well even though it is summer. Of course summer has just begun so I'll have to wait and see if I will get symptoms like vertigo or weakness, so far so good, I'm amazed! I hope to also see if I notice a difference in my balance after having some HBOT treatments, since that is supposed to help in circulating stem cells that are already in the body. All in due time as the saying goes. I am feeling very hopeful about the future! Never give up! ~ Lisa
HAWKS WIN!!! HAWKS WIN!!! HAWKS WIN!!!
06-09-10 Hawks Win!!! Hawks Win!!! Hawks Win!!! This is so awesome!!! Have a great weekend!!! ~ Lisa
06-04-10 I am no fair weather fan...go Blackhawks!!! I will have my blood test on Monday. Have a great weekend! ~ Lisa
05-29-10 OMG! I'm so excited about tonight's game! I can hardly believe it! I'm still feeling exhausted but will be having a blood test this week to check my thyroid, I've never had that done before. Hopefully if that is part of the problem, meds can help. We shall see...Go Blackhawks!!! Have a great Holiday weekend! ~ Lisa
05-14-10 Life feels a bit better, I have not yet filed but am adjusting my thinking around this bankruptcy necessity....it could be worse. I will really have to practice meditation and working at not being so stressed. I will also stick to following my diet of not eating the foods I do have an intolerance to, keep using the LDN, B1 & liver extract IM injections, and soon this upcoming week HBOT treatments. My hope is that the HBOT therapy will "awaken" some of the stem cells that are already present in my body. I guess only time will tell, I've got plenty of time so we shall see. I will not be continuing with the BPT therapy since I do not have insurance I need to choose between HBOT and BPT, HBOT wins for now. I feel I have felt quite a bit of difference with energy level even though it is still quite low during this past year since I began avoiding those foods my blood tested positive to for food intolerances. Of course I'm sure studies will need to be done to prove this theory...more waiting. In the meantime since I have had this blood test I will, continue avoiding those foods. I plan on trying the HBOT this next week at a local treatment center in Bolingbrook Illinois. I am hopeful but realize since I will not be able to have MRI's done on a regular basis for comparison, the results I will talk about on my site will be subjective. Hopefully I will be able to have some MRI's done to at least compare for myself. I will be hoping for obvious changes in my balance over the time I use the HBOT since I have read that it can help possibly activate the stem cells that already exist in my body. I hope I am explaining that correctly here is one link http://www.perlhealth.com/perlmutter-hyperberic-center/stem-cell-study I am very excited to start trying this I feel at this point I likely will not ever have the funds for real stem cells so I will give this a try and list my results here as I always do. I really do just want to see if I can help my fellow MS patients with some of the info I have on my site. I wish Scot would have made it so he could try but that was not meant to be. Please be sure of course to run any info I have on my site that you might like to try past your docs. Never give up! ~ Lisa
05-07-10 My life has gotten incredibly stressful, long story but I will soon need to file for Bankruptcy. Actually I'm not so concerned about that, I just want to get it over with. Certain circumstances have left me with no choice. I need a fresh start and hopefully starting back on the LDN will help keep symptoms at bay. A few years ago I used it at 3 mg, this time we will try 3.5. So hopefully with the diet changes and the LDN I can make it through the coming summer heat with no big problems. I realized too that I have not mentioned that for several years I have been consistently using B1 & liver extract IM injections. That seemed to help during the summer months. Here is a linkhttp://www.quantumbalancing.com/news/klenner_ms.htm I know this treatment is not for everyone, it is a muscle shot, I had to crank up the music the first few times to have the guts to stuck the needle in my leg or arm, but once the needle is in the muscle I had no choice but to inject. I plan on staying with the Klenner protocol and adding the LDN. This disease is a huge pain in the neck, with no agreed upon diagnosis but I'll keep trying to find what may work for me. Never give up! ~ Lisa
04-23-10 I probably will just stick to following my dietary changes according to the blood test I had that showed the 29 food intolerances which I know some of you are sick of me going on and on about it. I apologize for that but to me it sure seems awfully coincidental that those particular foods that I have been eating pretty much since the day I was born seem to play a role in why I have developed MS. I started thinking maybe the foods I tested positive to are the foods I really like and have eaten consistently. (blueberries, almonds, cheese, cherries, cranberries, lettuce, tomatoes, wheat, just to name a few) However, I had never eaten Quinoa before yet it is one of the foods I tested positive to. One day when my brain is more lively and able to retain information better I would really like to educate myself through classes concerning food intolerances so I know exactly what I am talking about! In the mean time I will just stick to my new way of eating. Hopefully I can get my young new Neurologist to see that foods really do play a role in MS, and if he is looking for a mentor Neurologist to look at Dr. David Perlmutter. He does believe that foods play a role in MS, I think we need more open minded Neuros like him! I also have some info about Dr. Perlmutter and his view on how HBOT increases stem cell circulation within your own body. I would like to try that one day as well to see if that can help my lesions to heal. ? It would be interesting to try. Stay tuned...~ Lisa
04-17-10 I ended up not going back for further BPT treatments simply because of lack of money. My brain sucks and I keep screwing up my Medicare benefits, right now I only have in-patient coverage. I have to figure out what I can actually afford. So on that note finding out about if I actually have CCSVI will have to wait. I know I go on and on about the Human Blood print blood test I had done thanks to my brother Brian and friends, but I do like facts and this blood test showed me that there are some foods I need to stay away from. I wish this test had been around when I was 13 when the "fun" began for me. Since it was not, I will now just stick to it now. I certainly do not expect that in a matter of a few months, or maybe even years I will be all better. That just does not seem logical to me, I have many, many lesions in my brain. From reading more and more about cord blood, and some of the MS patients who have been fortunate to have used this therapy, that may be the one treatment that could help most. I hope to be able to try it in the next few years once I have the money saved. I guess only time will tell. Never give up! ~ Lisa
04-12-10 I still do not have much faith in Neuros, I know they are very educated but I really do not like the pushing of those worthless ABC drugs! I've known way to many fellow patients who used them 'til the day they died, of course died being the operative word. I will forever believe what my blood test showed when it comes to food intolerances because blood cannot lie! One day I will have that test done to check for CCSVI but for now I will stick to what I can afford. Tomorrow I will be starting BPT. My energy level is very low I'm certain mostly because I have such a difficult time with falling asleep. For now I am using Temazepam 30mg which seems to be helping a bit, at least can fall asleep! My brain still is fuzzy, difficult for my brain to wake up. I just started using BPT on the 13th and will have another treatment tomorrow. I do feel a bit more perky today, it is a very fascinating treatment, interesting to watch my blood being "cleaned". My vein is hooked up to a device, it takes about 45 minutes, only time will tell. ever give up! ~ Lisa
03-30-10 I at the moment do not have any great faith in Neurologists. The only one I have read about that seems to be any good is Dr. David Perlmutter out of Naples Florida. http://www.perlhealth.com/ http://www.renegadeneurologist.com/bacterium-linked-to-multiple-sclerosis/ maybe it will work better now that I stopped eating the foods that my blood test showed I have an intolerance to. ??
http://www.renegadeneurologist.com/?s=ms+and+HBOT this sounds fascinating too!
I'll update the next time I have energy. Cya ~ Lisa
02-07-10 I am going to try to find Neurologists in the local and Chicago area who have an interest in that new CCSVI theory since I do have varicose veins that run in my family. It sure cannot hurt. I think maybe we have to take things in our own hands, I'm sick of waiting! This does appear to be quite a new theory, I know Dr. Zeidman had not heard of it before I mentioned it. So I am going to send some letters out to some local and Chicago land Neurologists to see if they have heard of this and if they would be interested in taking me on as a patient. It will be interesting to see what happens. It would work better if I could simply fall asleep. So hopefully a doctor will take me on! I'm so tired!
I'm still not ready to give up! ~ Lisa
01-23-10 I have decided to not continue treatment with Dr. Zeidman and resume treatment with Dr. Ayre. Dr. Z wants me to get back on one of the ABC drugs. My experience with those is not very good. I know I am not a doctor, but most doctors do not have MS so they have no real experience as we do. Every Neuro I went to had no belief that diet has nothing to do with MS and that Dr. Swank was a crackpot. Well, now that I have had a blood test that actually shows for a fact that I have an intolerance to 29 of 154 foods tested. For me, gluten is not one of them although wheat is, if you would like to see my blood test results click here. It seems to me that MS is not just caused by one thing. I believe food plays a major role, but now there is this new theory about MS possibly also being a venous disease. I know for myself, some of my family members have MS, epilepsy, possibly Aspergers so it appears our family has a tendency towards Neurological problems. Definitely varicose veins run in my family, in a cousin, my mom, her late sister, my brother Brian who had them fixed as did my cousin. I have one varicose vein on my right inner thigh so it could be a real possibility that CCSVI could be a problem for me as well. Finding that out will have to wait because I screwed up my Medicare and it will not be accessible until July. Though thanks to my brother Brian and some friends from the Lisle Senior High School class of '79 they raised some money for me by playing a touch football game called the Turkey Bowl, this past year was #XXXIV! The raised quite a bit, but not quite enough, that is where Medicare will be a necessity. I hate the heat of July but will be excited this year so I can have this CCSVI test done. If that does not complete my recovery I will look to cord blood stem cells...again big bucks will be needed so I will be a dork and keep playing PCH, I figure what the heck. I read information which was lost when one of my computers crashed a few year ago about 2 MS patients from England who had the chronic insomnia and OAB that I have and they had the cord blood treatment done and they could once again sleep and also had no more OAB. I realize this is just internet info but I would try it in a heartbeat, I'm so tired of not being able to sleep. I'm 47 and easily look 57...depressing! But I will never quit trying! I'm not in great shape, though I am very fortunate in that I can still walk to a certain degree with walls or my cane. I have zero balance, I believe that is where stem cells might be needed. It may sound silly but if it works the way I hope maybe other MS patients can see my recovery, though it will likely be very long and have hope for the future. I know this is going to take a long time since I did not get started with the dietary changes when I was 13, when this all began for me. Will I ever be able to run again? I never liked running anyway, but I would love to take my dog Daisey for a walk...my dream! Patience will be the name of the game! Never give up! ~Lisa