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  • #9971

    Anonymous

    [FONT=”Microsoft Sans Serif”]Greetings all.

    I am so pleased to see an increase in SCT interest and chatter. What was once a seemingly forbidden topic has become a trend full of hope and health.

    I rarely post anymore as I feel not only has my story been brought to light, but others are now carrying the torch and passing the word with new vigor and renewed strength. It gives me great joy as I know that the more people that report being cured by SCT from the attack of CIDP, the more the skeptics will venture towards educating themselves in the same vain. You torch holders know who you are ))

    At this moment, Sophie and I are vacationing in Paris. I say this not to brag or taunt– but rather to illustrate the level of health I have regained. There is no longer any limit to my abilities. We walk across the city and back, climb the metro stairs and traverse museums and gardens. I have always loved travel and one of my biggest regrets/fears when I became sick was that I would never again be able to properly enjoy Europe, meaning without a wheelchair or other such devices. Thanks to Stem Cell Transplant, I have attained this goal!

    Also, as I have previously mentioned, I returned to work full duty as a San Francisco Police Officer in February. I am not at a desk. I work 10+ hour days in full patrol capacity in the city’s worst neighborhood. I run, chase, fight and debate. This was my other goal, being able to do the work I love and thrive within it. This goal too, I have attained.

    A couple months ago, Sophie and I jumped out of an airplane from 13,000 feet altitude as skydiving has always been something I wanted to do, at least once.

    Had I listened to my neurologist, I would be an unemployed cripple by now as none of the traditional treatments worked well enough for me and I was already paralyzed at 6 months post dx. I left my neurologist and sought treatment from Dr. Burt, an Immunotherapist, to treat the root of the problem– my immune system had gone bad, and the neurologic manifestations were mere symptoms of that pathology. Neurologists attempt to modify these symptoms but don’t make any claim to treat the root of the problem; in fact they would not know how, it is not within their specialized toolbox. Sometimes they are luckier than others and give some people relief, other times they fail miserably. But all the while, they almost always refute the value of SCT despite their own inadequacies and deficiencies. And as Yuehan has so eloquently put it, the “doctor on a pedestal is always right mantra” is a deeply dangerous one as it is absolutely essential to be one’s own advocate throughout the healthcare experience.

    To choose or not to choose a given course of action, SCT or not, is entirely for the individual and his or her family to make. My efforts here, my website and the Facebook page have only been to share my story and the great success SCT provided me. I felt it necessary to push back at times to make certain that new folks that lurked and came along later would have a full understanding, so that they could make their own informed decision.

    There is no need for blame or hard feelings. I harbor none. Some people felt it necessary to caution readers about what I wrote, I countered them– we all said what we had to say and that’s a beautiful thing. It is democracy at it’s best and in accordance with our country’s 1st amendment. All good stuff.

    Let Yuehan express is frustrations now. Let him get it out. If you disagree, tell him– but don’t crucify him. Embrace him, even if you disagree.

    Drummer, Yuehan is a beautiful name. An example of our wonderful diversity which makes us awesome.

    Kelly, what is so wrong with revisiting difficult dialog? Perhaps we can learn from it, come together and/or better understand how things got so difficult to begin with. I have never been an advocate for burying things. The mere fact that any mention of that timeframe creates such flares indicates to me that more dialog could only benefit the culture we call this forum.

    Kelly, we have had hard times you and I. It is clear we both have much to offer and learn. Hold your own kelly, stay in play. It always feels like you are about to shut the door, both with threats to do so and with deleted posts. It is okay to disagree. It is beneficial for debate and disagreement so that not only one point of view dominates. And most importantly, I implore you, please don’t dread revisiting unresolved dissension. There is no hate here. My heart is open. And although you “don’t hug,” I personally open my arms to hug you now. I’ll respect you if you can’t accept that. Peace.

    It’s okay to argue friends. It’s okay to disagree too. Without dialog, there can be no relationship. This forum represents a labyrinth of relationships. Let’s care enough to do two things: (1)engage, as in stay put and (2)respect.

    Wishing everyone health!
    Alice

    [/FONT]

    #101707

    Anonymous

    Alice,

    Glad you are enjoying Paris. Please continue to stop by and give us an update. Your right about diversity and differences of opinion, but hopefully we can communicate without trying to rip each other to pieces.

    I do admire your courage to venture into relatively uncharted waters and lead the way for others. I hope you continue to enjoy Paris. I was surprise by the size of Notre Dame cathedral. For some reason I was expecting something much larger.

    #101711

    Anonymous

    Alice – I harbour no ill feelings towards you & I hope you are out living a fabulous life.

    I’m not really sure why you addressed me in this post on this forum though.

    But I will clear up a few things for you…

    1) I was asked to delete certain posts & I did so to help maintain peace on the forums.

    2) People seem to only remember you being attacked. No one mentions what things were said both publicly & privately to me. I took some pretty low blows. If I seem like I am ready to shut the door, it would be because of that.

    3) I don’t have a problem with debate. I actually LOVE to debate. I have a problem with people who can’t handle a debate & decide to turn ugly with personal insults. I have a problem with people who come out of the woodwork to attack me for stating my opinion. I’m a naturally guarded person and I’m even more so now.

    4) I don’t know that this forum is ready to revisit the difficult dialogue. Perhaps folks are & I would strongly encourage them to do so, if they feel the need. I, personally, will not. To me that period of time was put into a box & I’m not ever opening it again. It’s not worth it to me. When I first got married my Grandma gave me the best advice ever. She told me to pick my battles. She said to decide what was important & what wasn’t & then to fight for the important things & let everything else go. So…that’s what I’ve done. (She said this philosophy also applies to parenting & I’m using it there too)

    5) I’m working on the hugging.

    Kelly

    #101712

    Anonymous

    [FONT=”Microsoft Sans Serif”]Don’t you know, everything in France is small or smaller…
    Compared, that is, to US standards ))[/FONT]

    #101759

    Anonymous

    Alice,

    It is so good to see you posting your continued success with the sct – I know this answers the questions in other posts regarding what happened to folks after the sct and why aren’t they posting?

    I will forever be grateful to you for introducing the sct program here (and I know many others that have gone after you feel the same way). I will “pay it forward” by coming here to post my own success stories as I hope all that have gone through this will do.

    When I first learned about the sct through your posts, I was doing so good on the treatment protocol designed by my neurologist, that I could still work full time and go dancing several nights a week. It was an interesting option that I filed away if needed down the road. However, my initial success with treatment didn’t continue and I suddenly took a turn for the worse. And despite changes in my treatment, I kept getting worse. When I first mentioned the sct trials to my neurologist, he immediately rejected the idea as he doesn’t like his patients used as “lab rats”! But when I asked him if he had read anything on it, he admitted he had not. So we scheduled a follow up visit while he did his research. He ended up talking to Dr. Burt several times and now believes this is an excellent option for those of us that continue to decline, despite the various treatments, and has recommended it to several other patients for a variety of diseases. He told me the neurologist only treats the symptoms of MS, CIDP, etc as they do not know the cause, they cannot treat the root of the condition. He is so happy for me and my results and glad to have his treatment options enlarged to include this protocol. He assisted me in getting into the program and I am grateful to him as well.

    But Alice, you are the ONE that got this going and you will forever be a part of my healing! I am grateful beyond words and am now determined to share this hope with others that are in a hopeless situation.

    Thank you, Alice! I appreciate you sticking in here in – the torch is passed!!!!!

    #101766

    Lori222
    Member

    nicely said Linda— and I am glad you continue to do well Alice.

    #101773

    Anonymous

    [FONT=”Microsoft Sans Serif”]Thank you Linda– yes, it is you who comes to mind first as far as passing the SCT torch. And I think you will have help… I’ll pass by from time to time as well; but I do look forward to a better energy here, a more comfortable discourse without the divisiveness that has permeated this place. I look forward to a spirit of kindness even among disagreement. I look forward to a time described by Pam H., my hero, who has stayed fair, clear and true to her feelings despite assaults against her publicly and personally for agreeing or disagreeing in contradiction to the “wrong” people. Pam is who helped me come to my decision just as I may have helped you Linda. We’ve all taken our licks but that’s really okay– we are better for it and the discourse inadvertently helped in publicizing the word about chemotherapy/SCT.

    After all, what has our intention always been? For me it has been to make clear for those interested that another option exists. That traditional treatments are only a set of options– but that within reach, is another option– a more aggressive one– Stem Cell Transplant. To be clear, the magic is not so much the reinfusion of one’s stem cells; rather it is the high dose chemotherapy regimen that kills off the CIDP and the stem cells are used simply as a rescue for the immune system. Stem cells rebuild the immune system quickly so the body has less chance of getting a serious infection. This is why Pam H. was cured by strictly chemotherapy. She was lucky in a sense, as she did not fall ill in the months it took for her body to reestablish immunity. With SCT, it takes only days to reestablish immunity– and herein lies the difference.

    Further on intention– I think (hope) I can speak for the others who have sought SCT that [I]approval[/I] has never been our wish or hope; if we post here, or anywhere, we wish to share our experiences for the sake of others who may choose to walk our same paths. The resistance [I]I felt[/I] when I posted the success of my story sometime back, baffled me; analogously, it would be the same if we aggressively refuted IVIG as X, Y or Z… Remember, it too was once in the experimental phase; and although it helps some, we can far but call it a cure or even a strongly successful remedy for the greater majority. Having said that, if it helps you, which it does some, all the best!

    GH-CIDP: I am very glad your neurologists have had open minds and were receptive to you. It is true that I don’t have a statistical survey conducted scientifically to illustrate the profession’s perspective on SCT. I speak from empiricism. From my experience, the countless people who contact Sophie and I, the comments posted on this forum, our Facebook page and the results of my website, all lead me to my perspective. It has been, by far, our biggest battle when frightened people, unable to use their hands or even walk, often in terrific pain, seek our guidance in desperate hope for an improvement in their health– only to be shot down by their own neurologists, time and again. So GH-CIDP, if you know of neurologists that have been helpful and supportive, as I know Linda M’s has, please, for the sake of all, reveal them… I wish I knew one when I was deteriorating and being told by the very neurologist this foundation recommends for my area, how SCT was a ridiculous option.

    Last but not least, Kelly: You wrote– “I’m not really sure why you addressed me in this post on this forum though.” I addressed you here because this topic is the crux of our paths.

    I too was given the great advice of picking one’s battles by many I respect, including my mother. Advice I adhere to. The difference is, firstly, I don’t see this discourse as having to be a battle; and secondly, semantics aside, it’s one well worth the effort.[/FONT]

    #102256

    Anonymous

    Hi Alice,

    What did your immunotherapist do? What treatments did Dr. Burt suggest?

    One thing GBS and CIPD have in common are immune problems.

    Thanks,

    mark.

    #102267

    Anonymous

    [FONT=”Microsoft Sans Serif”]I sent you a private message.[/FONT]

    #102407

    Anonymous

    I am going to try to pick up the torch soon! Going to Chicago on Tues, Nov 29. Appts w/ NW are Nov 30 and Dec 2nd. I want to thank Alice also for putting all this information on here so I could find out about SCT. I just had lunch with her and Sophie yesterday and it was wonderful to meet them both! So much information and hints as to how to handle the interview with the docs. Spoke on the phone to Linda today and got some more advice. These gals couldn’t be more supportive and helpful. I hope to be the same as I travel down this path.
    Thank you ladies and gentlemen who went thru this process before me and are willing to share the experience.
    God bless us all!
    Wendy 🙂

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