Postings Down? Animosity? You name it?
AnonymousOctober 15, 2011 at 10:05 am
I’ve almost quit posting.
I didn’t even join until 5-5-2010 ‘cuz I did not have a diagnosis yet. Nor did I ever doggedly search on line to find a match for my few symptoms.
On the other hand, my Medical Records list exceeds 43 doctors (including some famous name highly rated Clinics) who essentially told me “Go home, come back in 6 months. Oh, I’m not throwing you away, you can join all the rest.”
Me, ‘join all the rest?’ The Doctors, “Yes, all those who don’t know what they have.”
No, thank you. Then I applied to Mayo Clinic and, eventually got a diagnosis.
I admire and appreciate the posters who have that inner strength and calming composure to continue to offer sound, sage advice.
And, I admire the posters who, such as I tried to do, give active, click able links to Scientific medical based literature, studies and publications.
I do not appreciate the ones who state something as a fact, or have an agenda with no link to any credible reference for the fact or agenda.
There is a certainly a fine line somewhere between an obsession on “Gee, I have this or that on-line discovered condition” and what has been pointed out, and I’ve pointed out many times:
‘If we do not vigorously pursue our own condition while refusing to accept [U]the Doctor on a Pedestal is Always right mantra[/U], we’d be sunk.
Why have I slowed, OK, stopped posting? It is my impression that most readers never click on a link I give. Further, even fewer of those who I figure do click on a link comprehensively digest the material, nor do they get the significance of this condition.
For those of you who are the clicking, inquisitive, comprehending exceptions, you know who you are.
CIDP, with some exceptions, will not go away, even with life long IVIG or Steroid, or you name it [B]STANDARD[/B] textbook treatment.
Well, everybody’s different.
AnonymousOctober 15, 2011 at 7:16 pm
Yuehan – I click on almost all of the links you post. I slowed down my research over the years & you helped my love of researching come back to me.
I get what you are saying & it can be disheartening. I just try to remember the few I may be helping. I hardly ever post any more. I’m not sure if my advice is wanted or needed. Sometimes I worry I will say something to make another poster angry so I find it best to just not even bother.
AnonymousOctober 15, 2011 at 10:39 pm
Yeuhan and Kelley,
I always read your posts and I thank you for them. You both have helped me in the past with information and support. If I had known what I know now it would have made a huge difference. I unfortunately wasn’t diagnosed till the CIDP had progressed to unbearable. I appreciate all your input.
AnonymousOctober 16, 2011 at 8:02 am
Thanks for your replies, “guys.” 🙂
I appreciate what each of you is saying. Ya’alls are part of the calm, composed, sound, sage, clicking, comprehending and inquistive advice group.
WHEWW….. for an editor out there- How many adjectives is it ‘proper’ to leave in one string?????
I hope the group can grow and prosper.
AnonymousOctober 16, 2011 at 11:10 am
I quit posting because of so much negativity surrounding the clincial trials at Northwestern – the stem cell transplant program. Seemed like everytime it got mentioned, there were so many offering cautions, that the hope this program brings got lost.
Alice brought a great deal of very reliable information about the sct to this forum – complete with links and clinical information. After she received her sct, she posted in the success stories that she felt cured. And then began a series of ugly and unneccessary dialog on the word “cured”. Well, I was #21 through the same program, received my stem cells back on Aug 23rd of this year and I will stand up and tell anyone that I feel cured. My body is no longer under attack and I can feel the healing. I already have so much improvement, my family and friends are absolutely amazed.
But on this site, oh my! Cautions and word smithing and all sorts of negativity occured. I come here occasionally for the new comers to let people know there truly is hope to kick the CIDP out of the body. I’ve talked to a majority of those that went before me, and everyone agrees it was worth it. Not everyone gets full recovery – it depends on how much damage was done – but WE ALL agree the progression of CIDP is stopped and that makes it worthwhile.
It took me a considerable amount of time and some sacrifice to work out the details of how to pull off the sct, but that time passed anyway and the damage progressed. Now I have NO more damage occuring.
A lot of us have moved to facebook as we felt a few had taken over this site and drowned out hope. There are several CIDP groups, but the one I go to is called “CIDP and Stem Cell Transplant” and the hope on that page is inspiring. No one offers cautions or takes exceptions to the words, they just offer hope and encouragement. And the number of people applying for and going through the sct is growing exponentially because of results posted to this page! I find it very sad that it felt like this forum rejected this hope as I used to come here often for information …
The sct program is being used, VERY succesfully, on ALL autoimmune conditions.
AnonymousOctober 16, 2011 at 12:06 pm
Linda – No one is perfect. Mistakes were made & I would bet, if people met face to face & talked about things – the animosity would no longer exist. I think sometimes the message gets lost in the words & with the person reading the post. It happened on both sides of the debate.
I think every time this forum tries to move past that time someone brings it up again & that allows us to not be able to move forward. With time all wounds heal but not if we keep ripping the band aid off.
It’s done. It’s over with. I say lets let it be. It happened…as in the past…like a LONG time ago.
Am I sorry that I stated my opinion? No
Am I sorry it was taken the way it was? Yes
Am I sorry that people got hurt? Yes
Would I do it again? NO…I would turn my computer off & walk away.
I have been on this forum for nearly 6 years. I came when there was no other mother with a child with CIDP. I came when no one really knew much about IVIG. When I came no one was here with the answers I was seeking. I used to try to post as much information as I could. I used to try to share my opinions & my thoughts. I just wanted to help people & get the most accurate informative information out to the people who were in the same situation that I was in. Did I do it correctly? Perhaps not. But I’ve learned & I’ve grown.
Linda – I’m happy for you & every other person who has gone through the stem cell program. I think it’s great that you feel cured. I think it’s amazing to be so brave to go through it. I wish you & the rest all the best in the world. I hope you continue to recover & go on to live fabulous lives.
AnonymousOctober 16, 2011 at 1:08 pm
First of all, I couldn’t know how this thread would go.
Hopefully this, and all threads, can maintain a spirit of positive, calming composure and continue to offer sound, sage advice without getting sucked back down into negativity.
Negativity begets what? Uh, gee more negativity. It’s true, for me, that electronic media rates on the lowest scale possible of good ways to communicate anything.
I have to say that I joined this site about the time Alice was getting “beat up.” I was elated to learn something new, yet sickened by the turmoil.
My impression, OK?
I estimate (NW) North Western is up to #25, or so, patients on the CIDP Clinical Trial. I can only readily recall 4 who ‘spoke up’ and said “yes, I did the procedure and I feel better.”
OK, 5, the New Zealand guy. But, he’s no longer posting either, is he?
I bless each of them.
Is that about 20%? That’s the wrong end of a standard distribution curve (bell curve.) Of course, all the rest may neither read nor post here. Then it’s a great, 100% curve!
I can only say it another way, if people ‘get mugged’ they are not going to walk these streets anymore.
October 16, 2011 at 10:00 pm
yuehan—as for eading your threads, please dont ever stop posting them. I read all of them, they are very helpful and interesting. I spent an entire afternoon reading your latest one on the immne system. Once i got into that site there were so many others that came up with it that i just had to read!!! Also thank you for sharing your mayo, experience, it was most helpful when i went out—right down to the value place motel, I never would have found a place as reasonably priced as that without your help.
Linda—I am glad you are doing well 🙂 and hope you continue to improve to 100% !!! I am very happy for all you posted about your sct—the more info the better.
Kelly–i dont think you should ever feel bad about posting your opinion or view on things. That’s what these boards are for to learn from each other and to hear others opinions. I think all of us know that we are all just “regular people” who have good days and bad days. We all have disagreements in our lives from time to time with friends, siblings, spouses etc—-doesn’t mean we go away and never speak to them again.
AnonymousOctober 16, 2011 at 11:49 pm
I have been on the forum for almost 9 years now, had over 1500 long posts on the old forum before it crashed around 2005 or 2006. The new people here today cannot begin to imagine how active that forum was. People like Jethro, Gene, Brandy, Jerimy, Liz, Dick S, Marc M, etc. commenting on all of the new posts daily. There was no arguing, just constructive & helpful comments on each post. Kelley, back then the CIDP children’s forum used to be very active as well.
I have continued to read & post periodically, but not like I once did. I was part of that time frame when Alice got pretty beat up & I stood up for her, as my cytoxan protocol back in 2003 was so similar to the SCT & I believe that these two protocols do arrest CIDP. I have been off of all treatments since Sept. of 2003, & am stable. I received many private messages during that time, some not so nice. But I hold no grudges, we would not come here if we had all of the answers or needed no help. I don’t know why the forum has been so inactive… maybe with better treatments people are now recovering better & getting on with work, raising a family, etc.
But this is a place people come to for support, so let’s all keep it a nice & welcoming site. Besides, I don’t feel well enough to argue, LOL!
AnonymousOctober 17, 2011 at 1:45 am
Pam – I was on the old board for a very short time. I think shortly after I joined it crashed. I don’t remember there ever being an active child’s forum. I would have loved to be able to connect with other parents during that time. It really could have helped.
As for the Alice thing – I think the negativity came from both sides but not everything was disclosed publicly. I think what happened was an explosion of harsh feelings that had been building up over time. It’s unfortunate things happened the way that they did. I wish I would have handled it differently.
I really hope we can all move past it. It’s been a long time since it happened & it doesn’t do this forum any good if we keep revisiting it. It was a moment in time…it’s passed. I think it would be best if we all let sleeping dogs lie & get back to what is really important in our lives.
I hope moving forward we, as a forum, can continue to provide compassionate advice to those who need and want it….that’s all I’ve ever wanted to do.
AnonymousOctober 17, 2011 at 11:16 am
I know I moved past it right away, never have been one to hold grudges! I continue to look for new people who really need help & answers; always recommend IVIG as a first treatment for CIDP. I suffered way too many side effects from being on solumedrol for 21 months to advice it. I still think that cytoxan shold be reserved for only those refractory to IVIG, wished IVIG woud have worked for me.
Back in 2002 when I first joined there were many parents who posted on the child’s forum, I wonder what happened? I know there are a lot of CIDP people posting on the FB site, too bad we all can’t stay in one place. I do think that in the past some negativity on this site turned people off to it. Where is Dawn, she used to help out many people with her knowledge? Also, With Hope was so intelligent? Have these people just moved on with their lives? Or did it have to do with those negative posts? It’s such a shame, because at my worst this site kept me going, I felt like everyone who belonged were like friends & family to me. Hope it can be that way again…
AnonymousOctober 17, 2011 at 12:34 pm
just trying to give an honest answer to yuehan’s question. That time period caused a big rift and many of the people I used to see post here now post on one or more of the facebook pages.
I also agree it is a shame that we cannot all come together in one location as there is much information provided in numerous locations now … wish everyone would come back as this site was a life line for me when first diagnosed.
AnonymousOctober 17, 2011 at 3:41 pm
I was wondering the same thing, where people went. I came on here almost 2 years ago. There were so many people commenting all the time, the same people too, and I don’t see them anymore. I am hoping that maybe things are going well for them and that is why they are not here. It is a shame because there are so many knowledgeable people who helped me so much in the beginning. Maybe they have moved onto other boards, like on Facebook.
I too witnessed the big arguments on here over the sct and it did get pretty ugly. I too wonder why some of those people, other than Alice, do not come back and post about their experiences, positive or negative. It seems like a lot of people set up blogs and blog about the treatment, but then do not give any updates. So other than Alice, did it work? Did it help other people? It is hard to know. I am curious about the long range ramifications, not just the short term. It is too soon to tell. It is an exciting new development, but it is not for everyone, maybe even financially. If your insurance does not cover it, how can you afford it? I think that people were not sensitive to this issue or respectful about this. I don’t want to start another argument about this, just thinking out loud.
I have noticed that recently, there are some new people on here that are a bit negative, critical and not very supportive. I feel like these individuals are always arguing with people and opinionated in a critical and condescending way. That may be contributing the the posts being down. I know that it makes me not want to come on here.
With that being said, I hope that this forum can continue to be a lifeline for people and I am eternally grateful to the people who helped me.
AnonymousOctober 17, 2011 at 5:03 pm
[QUOTE=jessicah]…I too wonder why some of those people, other than Alice, do not come back and post about their experiences, positive or negative…With that being said, I hope that this forum can continue to be a lifeline for people and I am eternally grateful to the people who helped me.
Honestly, if my wife did not have such a big, kind, open heart I would likely not have shared my experience, for a long time, if ever.
I too, am so grateful to Alice for creating her web page, for providing links to others’ webpage experiences and for ‘hanging in there’ when the going got tough.
Without her input and that of the other STC folks I’ve contacted, I likely would not have learned about the NW STC Program or participated in it.
And, yes, without the feedback of the others how does anyone make a reasonable decision to try it or not?
I have reviewed the Facebook page. In my opinion it is not an alternative to this site.
The CIDP and Stem Cell Transplant Facebook page is for those who have CIDP and who have undergone the transplant.
You need not join Facebook to “Read All About It!” I have not joined Facebook, yet I still can read the success stories.
Blinders? Anybody got Blinders? Whadda I mean? If anybody on this website wants to read STC success stories, go to Facebook and read them.
I Absolutely, Categorically and Emphatically am not aiming my remarks at anyone.
AnonymousOctober 17, 2011 at 9:50 pm
I’m sure you met J as she is there and got her stemmies back on the 13th (we Skype often). I also agree with you that the “CIDP and Stem Cell Transplant” facebook page is specifically for folks interested in this procedure. However, there are also 2 other CIDP pages and a lot of familier faces on those as well. I still find this site easier to use and to search than any on facebook and hope folks will come back … and I hope you will post your experiences and results here!
To date, I’ve personally met, face to face, 8 prior CIDP transplant patients and talked to several more … I am a risk adverse person, so did my homework before deciding. Then I had to do some serious financial planning to pull this off as I am single have only myself to look to for financial support!
Now I only want to “pay it forward” by encouraging and helping those that are coming along after me with the same wonderful, positive support and information that I received!
AnonymousOctober 18, 2011 at 10:10 am
“YUEHAN === What kind of name is that ?”
Oh great here we go again. You wonder why so many left this sight when we start fighting among ourselves. I join just before the site crashed the last time. A while back I had to take a short break and when I came back the cohesion and congeniality seemed to have disappeared along with many of the old timers.
I come here to see if there have been any advancements or new approaches and to lend support. Granted I do not have the medical knowledge to fully comprehend all the postings but I enjoy stumbling through them. I can understand yuehan’s consternation wondering if it is worth all the effort. Is it worth it? Does anyone give a rat’s ‘patut’? As far as I’m concerned the answer is YES!
However, if we are going to continue to fight…
AnonymousOctober 18, 2011 at 2:17 pm
Drummer – Something I’ve had to apply from my “real life” to my “online life” is if you can’t say something nice – you shouldn’t say anything at all.
I think sometimes we would say things to people online that we would never say to them if we were face to face.
There are times when it’s better to just turn the computer off & walk away.
If we ever want to move forward we can’t have posts like this. We just can’t.
AnonymousOctober 18, 2011 at 5:16 pm
Yuehan – I greatly appreciate each and every one of your posts – please do not be put off by one person who chooses “to fight with anyone they can” (did you really write this, Drummer, after picking at Yuehan??? WOW)! Please continue to bring your well thought out discussions and information to this forum! It really is needed!!
Well said Kelly, Godney and Jim C.
October 18, 2011 at 10:00 pm
I agree Linda–this forum is needed. I’ve read the success stories on fb—but it just doesnt give all the info like this forum does. hopefully nobody will be discouraged by disagreements and continue to post. Lori
AnonymousOctober 19, 2011 at 9:57 pm
Yuehan, I was not on here for a while because I got logged off and couldn’t figure out my password and it wasn’t resetting. Then I guess I found the one on Facebook had grown and just hung out there for a while. But then I decided to try again to figure out my password- And I finally got it right. I came back because of all you people. I missed all of you and I missed your posts- especially yours, Yuehan. I really enjoy the links you include as I don’t know how to find them or post them. I love hearing about different treatments, medications, homeopathic regimines, etc. That is the main reason I am here. I am searching… I appreciate hearing the good, the bad and the ugly. But I don’t like hearing anyone disrepecting another person or their choices. Those of you whose posts I just read made me want to cry. We all need each other. I need all of you. Once again, Yuehan- you are so important on this site- you have no idea how many people you have helped.
AnonymousOctober 20, 2011 at 11:01 am
I am one of the oldies from before the site crashed. I have gone months in between posting and even reading the forums. I don’t play into any games and never will 🙂
I just want to share that you all are a part of my ‘family’ in life and always have been. My siblings hear me reference you all quite often. I don’t know what I would have done without this forum for the past 14 years!
I find myself being most sympathetic to those that need to vent when no one understands what they are going through… we understand. I am not very knowledgable except for the issue of resting and resting.
Let’s all be as happy as we can on here and play nicely :p
AnonymousOctober 21, 2011 at 10:43 am
I thank Yuehan for starting this thread. I am one of those who have stopped posting due to the recent few that viciously attack ideas outside of the AMA. Since my GBS 5 years ago, I avoid confrontation and negativity. It angers me to see a few people taking away Hope from those who are desperate to find a solution. I can name those but won’t.
I asked my dear friend and therapist why some are not willing to try simple ways to get better. (When I had GBS the first time, I was willing to do macrobiotics if it would stop the paralysis. Anything. He advised me that it wouldn’t give me the results I wanted.) He said that some people do not want to get better. They become their illness and like the attention it gives them. This boggled my mind.
I get private messages asking for my help. When I email back that I need to talk to them to save time, I never hear back.( I have free phone minutes.) They want a quick fix. I need to find out what their body is telling them. All of their symptoms…to see how all the pieces of the puzzle fit together. I respect their decision and do not waste my time.
I had a man from England find my posts and write to me. He does not have GBS or CIDP. He wanted some suggestions to get off the 16 years of steroids due to his skin condition.
I find it sad that these few negative people have driven many of us away. I do not think it is because we are healthy as much as that we don’t want to be attacked for what we write. PLUS, when we are attacked, there are only one or two who speak up in support of us. So it looks like the rest are in support of their criticism of us.
I am healthy and wanted to share what helped me. I do not want to abandon our group. Someone should do something about this situation. I thank all of you who have contributed to this post about what is really happening. It is a shame to see “a few of them” drive us away.
AnonymousOctober 21, 2011 at 11:25 am
Isn’t there a forum moderator? Why can’t this individual remove the comments from the offensive individuals or block them from posting? This is a private, exclusive club (albeit one that we reluctantly joined!). You have to sign up to be able to post. People get kicked out of private clubs all the time. Someone should be monitoring these posts and facilitating the situation.
AnonymousOctober 21, 2011 at 10:18 pm
The only thing that concerns me is this: I don’t want everyone to agree on everything all of the time. I like people having different opinions. I feel most comfortable listening to all sides (regarding treatments); doing what research I can and then making my own decisions. I believe that is most healthy and productive. There is not only one approach to anything. The problem, I believe, is not the differences of opinions, but the way some members come across in trying to convey their opinion. Top that off with some people (who are in so much pain, lonely, having financial difficulties, etc.) trying to convey their opinion and sometimes it may come out sounding pretty aggressive. Bottom line: The rule should be “RESPECT”. We all should respect one another- their condition of GBS/CIDP, the person who may be suffering silently, those who are lonely, those who are angry, those who are confused, those who are scared, those who are financially burdened, those who are in pain, those who cannot find the proper treatment, those suffering from side effects, etc. – YES….WE NEED EACH OTHER…..SO LET’S ALL SHOW RESPECT TO OUR SISTERS AND BROTHERS.
AnonymousOctober 22, 2011 at 8:18 am
Then again, we do have members here who play mind games and power games with utter hypocrasy. They pretend to be in the right, while accusing and putting others in the wrong; but if their posts and pm’s were read in order, anyone would see their real intentions here are to manipulate others for their own agenda.
It’s a good thing that most people here can see through this.
AnonymousOctober 23, 2011 at 1:11 pm
I do have the FB link on the left side of my main FB page. I have gone on there a few times, but only the most current threads are at the top & one has to scroll down to read all of the posts on it, & then keep scrolling down for other threads. There is no search mechanism, no list of topics, etc. It seems to be very active as far as lots of people posting, but I like the format of this forum much better. I think it is sad that we have lost a lot of CIDP people to FB, as this format is so much better.
AnonymousOctober 23, 2011 at 2:23 pm
I agree this forum is easier to search and that is why I came back.
And I agree that all opinions should be voiced – but I feel it should be done in a positive way and on the correct forum. As an example, when Alice posted in Success Stories – that seems to me not to be the place to give opinions/warnings/cautions as she was posting HER story and what part of HER story is open to someone else’s opinion? I really felt like she was attacked and never did understand it. However, it did result in at least one person banned from this website and it wasn’t Alice.
During this same time, another member (can’t remember who – but kudos and more kudos!!!!) posted under the CIP-CIDP forum a great discussion thread on what “cured” would mean to each person. It generated some great discussion and opinions and was glad to read everyone’s views – there were no attacks, only opinions!
This website has a variety of forums depending on each one’s topics and/or circumstances. When I first joined, I went only to the CIP-CIDP forum as I felt I would find more people there like me, facing the same challenges I faced each day. I was glad there were some that crossed the various forums to post good information, but I was mostly glad to find a community of people that had to go through, personally, the same treatments/meds/experiences I did to be able to give me great first hand advice!
I hope we all move forward in respect and I hope folks will come back and feel as if they can easily contribute without feeling attacked by someone else’s opinion!
AnonymousOctober 23, 2011 at 8:23 pm
Linda – I don’t know who was banned but I do know someone who requested to be taken off of the site. This person even asked for their IP address to be “banned” so if they ever felt the need to post again they would not be able to.
I just don’t understand why you keep bringing up the “fight with Alice”. This thread wasn’t even about it. We know you are eluding to me, Dawn & WithHope. Since neither of them post here any more I suppose I am the one left to take the heat. I think the issue needs to remain between Alice & myself & if it ever gets resolved it should be between the 2 of us…privately. I took this thread to be in the spirit of moving past the issues & not rehashing them.
There were attacks on the “CIDP cured thread”. They were against me. I guess you don’t remember that. I was viciously attacked & called all kinds of names, my parenting was questioned, etc. Also, you don’t know this but I was receiving harassing phone calls at home & at all hours of the day & night. I was so scared that I contacted a good family friend who is a police officer to help me. And this was all because I said that I believe a certain amount of time should pass before the STC dr’s declare a person cured. It was my opinion & I stood by it.
(And I realize that last 2 paragraphs probably sound really “witchy” and I certainly don’t mean them to, but there was just no other way for me to say it. I’m an extremely direct person & I do not like to beat around the bush…which is how I tend to get myself into trouble.)
I NEVER once meant to take anything away from Alice. I’m happy for her. I’m happy for everyone who has gone through the STC and feels cured. I think it is awesome! I think it’s a great program. I have been telling other moms I thought a cure would be found within 5 years & I do believe that could very well be the STC program. I think when the FDA approves it (not if…WHEN) that a panel of physicians will meet & make a determination of when it will be appropriate to call a person cured – just like they did with cancer patients. I certainly do NOT intend to take away anyone’s happiness in making that statement…it’s just my opinion.
And that’s what I wanted to convey during “the fight”.
PS. Let it be known I am no longer taking harassing phone calls.
AnonymousOctober 24, 2011 at 4:36 am
[FONT=”Microsoft Sans Serif”]I did not see any attacks on the “Cured” thread against you Kelly. Differences of opinion, yes. Folks wanting to back people off my claim, yes. But attacks? None that I can see.
As far as harassing phone calls and private messages– I can not speak to this as I know of no one who has admitted such things nor can I imagine anyone besides me having enough skin in the game, at the time, to feel so passionate– and, for the record, I certainly never contacted you personally in anyway whatsoever. I never even came close to feel such a motivation– to throw stones in the form of hidden attacks. Although you do not accuse me of such attacks, it should be noted that my communication style is one of directness, as is evidenced on this forum. If there is bad blood against you, perhaps it originates from another source– and they should be ashamed of themselves.
[I](As an aside, I know of a few key people who came to my defense at the time that received nasty private messages and some were forwarded along to me for my information… Again, a shame.)[/I]
We have no battle Kelly. Simply, you were among a few others, those you referenced, that took issue with my assertion that I was cured. You and them have that right; likewise, I and the rest have the right to express our differences with you, as we did. Is that a battle? Not in my world. In my perspective, the more diversity, however uncomfortable it may feel, the more that is learned and sorted out. It is not a matter of winning or losing the argument, it is about folks hearing all of it and coming to their own decisions. Diversity breeds broadened thought, deeper discourse and a better understanding.
Again I disagree with you. You ask Linda M. why she continues to bring up the “fight with Alice.” You state that this thread is not even about that… I believe it is exactly about that in its essence. I don’t want to speak for Yuehan, but it would seem he held similar frustrations. Among much else, he wrote, “I have to say that I joined this site about the time Alice was getting “beat up.” I was elated to learn something new, yet sickened by the turmoil.” “Sickened by the turmoil,” is the spirit of it all!
You write, “There were attacks on the “CIDP cured thread”. They were against me. I guess you don’t remember that. I was viciously attacked & called all kinds of names, my parenting was questioned, etc.” I read through the thread and i don’t see what you claim. Please clarify.
Linda, you are wise when you write, “I hope we all move forward in respect and I hope folks will come back and feel as if they can easily contribute without feeling attacked by someone else’s opinion!”
I also agree with both Linda and Pam when they say that this forum’s format is a much better one for our needs than that of Facebook. The only reason Sophie and I created the Facebook page was because it became too contentious [I]here[/I] and people were contacting us privately in droves! We could not field the massive amount of inquiries coming our way and many expressed distaste for the forum and the many attributes ascribed to it by them. We needed a more central location to discuss SCT without turmoil.
I can only hope that the open dialog occurring now, disagreements included, will help dissipate the animosity and clear the path for open and free discussion, complete with respect, yet with room for differences.[/FONT]
AnonymousOctober 24, 2011 at 7:48 am
Alice – I don’t have time to fight with you. There were attacks against me. They were removed by the moderators – so they are no longer there for you or anyone else to read. There were people who came out of the woodwork – they had never posted here before – to attack me & others.
And yes, I did send an email to Pam that was less than kind. I admit to that. Obviously that is something Pam & I have to discuss. I do not recall sending any to anyone else. I’m not saying I didn’t – I just don’t remember, at this moment, doing so.
I am sorry for the way I acted. It wasn’t my intention to hurt you.
I never claimed YOU personally harassed me at home. I said someone did. This forum is a public forum & it WAS someone who was defending you. It was a man & he said so. I do not know how he got my phone number but I have certainly learned a lot about internet safety & I realize I wasn’t as careful with my information as I should have been.
Alice – I was so afraid during that time when I was receiving those calls. The man said my daughter should be taken away from me. Obviously this person wasn’t very sane. I didn’t know if he meant CPS should remove her, he should kidnap her or kill her.
So yeah…I kinda snapped. I’m a mama bear! I felt like I was standing, in the middle of the room with a blind fold on, and I was throwing punches to protect my family because I wasn’t sure who was coming after me.
Was it my best moment? NO
I want to make sure you know I am in NO way accusing you of having anything to do with those phone calls. I do not believe you are behind them.
Surely, as a police officer, you can understand how scared I was – since I’m sure you’ve seen first hand some crazy things.
Perhaps my issue with Linda bringing up that fight is because of what I went through personally. I’m kinda worried it’s going stir up some craziness for me again. I’d like to sweep it under the rug since there was a crazy person who was coming after me & my family.
I will say I have no ill feelings towards you. I think my message is & was lost in the words. If we were talking face to face I don’t think there would be an issue. I think you & I have more in common than either of us will ever realize.
AnonymousOctober 24, 2011 at 4:11 pm
I do actually think that is appropriate to bring up that time period, only because the idea behind this thread is, “where are all of the people who used to post?” I think that that particular Feb. there were a lot of hurtful things said, a lot of it directed at me & Alice, just because we were supporting the cytoxan protocol, hers the SCT & for me the high-dose cytoxan protocol. I believe the fighting turned a lot of people off, but like Alice I am tough-skinned & if Kelley sent me a nasty email (it would probably still be in my inbox,) I have no desire to read it, as that was a long time ago & I know what a good person you are Kelley, & would never hold a grudge.
I have a 30 yr. old son with spina bifida & you have a child with CIDP, both of us know the heartache of feeling so helpless at times watching our child. My son is in a wheelchair with a shunt & totally incontinent, yet he graduated from college with high scholastic honors & has been a sports journalist since he graduated from college. Your daughter is doing excellent, for that I thank God, count your blessings. I feel badly that people like Dawn & WithHope felt it necessary to leave, but maybe they just got on with their own busy lives? Brandy used to post on almost every thread (her husband had CIDP,) but after he passed away, she moved on with her own life. Dawn is healthy, why would one expect her to devote her life to this forum?
There are always new people coming on here, people have come & gone for for 9 yr. I have been on this forum. I stay because I have time & feel like I know a lot about this illness, I also have residuals. Alice is back at work & travelling Europe (hope you are having a wonderful time, Alice.) I have said before & will say agin, if IVIG infusions can make one almost normal, stay with them. I was not one of those, I had 44 IVIGs, 17 PE, & 21 months worth of weekly solumedrol infusions in 8 months & was still basically bedridden or in a power chair with no use of my hands. Cytoxan gave me my life back; I have residuals, but have not had any treatments or seen a neuro since 2004. Let’s hope some of those active people on FB discover or come back to this forum, I will continue to try to help those who need it. Alice is a great person, & I know that Kelly is as well. Must go &pack for my 10 day trip to the Cape to see my daughter & her family.
AnonymousOctober 24, 2011 at 8:02 pm
I don’t think it’s because of past issues. I think it is apathy. People will take the time to post something, and nobody bothers to respond. Look at the work Robert Shannon took with his youtube videos on recovering and no one has bothered to thank him or compliment him on the good job he did. I hang around over on the ALS forum (they initially thought hubby had ALS and I made friends there). Over there people who are dying and can only type with a toe or use eye gaze technology are very involved and responsive to posters. Not sure why the apathy is happening over here.
AnonymousOctober 25, 2011 at 6:04 am
[FONT=”Microsoft Sans Serif”]Thanks for your thoughtful input Pam. As always, you put perspective where it belongs.
And thanks Kelly for opening your heart, especially after the harassment you and your family endured.
During those difficult days back when, things here had become divisive. We all have some responsibility in that including myself. I wrote some pretty aggressive and harsh words in defense of my position and have never outwardly acknowledged that, or at least acknowledged that they may have been hurtful. [B]I am sorry.[/B] My tact was too strong even if the sentiment was true for me.
In regards to the [I]”Alice was beat-up/cured”[/I] days, let’s let it be over now. At least for those of us that stuck it out… Kelly and I have conversed privately and both of us want nothing more than what I believe everyone here wants: health, peace, respect and safety. Thanks to her openness, we are at peace with each other.
Let’s all be at peace and keep in mind what is most important. I’d like to hear from some others as far as what they deem most important. For me, it is the ability to express freely without reprisal and an effort by all to be open-minded to new or non-traditional ideas. For example, I know a guy with CIDP that has been on IVIG for 2-3 years that feels he has cured himself on huge doses of turmeric/curcumin. He has not had any IVIG treatments in months now and believes it is due to his use of high dose curcumin. He is afraid to post here because he anticipates an overwhelming amount of skepticism and negativity. This is a shame, in my opinion. Our world gets smaller and smaller and we miss potentially important discoveries. It would be my wish that my friend on curcumin could feel safe enough to post here.
AnonymousOctober 25, 2011 at 11:45 am
I don’t want to get in the middle of the debate, but am just commenting on the turmeric/curcumin comment in Alice’s last post. I love to hear about all kinds of methods that work for people, whether they be conventional, alternative or radical. Everyone is different so we can all learn from each other. I myself believe in both conventional and alternative methods and even the radical ones.
I recently read about the power of turmeric and was exploring this for myself. We all need to keep an open mind. If people don’t agree with alternative methods, then just ignore those posts. Don’t criticize people who practice alternative methods. So Alice, I would love it if your friend would post on here about his successes. We can all learn from each other, whether it be turmeric or the GAPS diet or sct or ivig, or whatever the case may be. Don’t we all have a common goal? To be healthy and live the best life we can for our limited time here.
AnonymousOctober 25, 2011 at 8:21 pm
I wasn’t going to address you in this thread (as I have not done until now), but you keep addressing me! I welcome constructive debate. I respect opinions. But I am tired of feeling as if I’m being chastised by you when I give an opinion.
Yuehan asked a question. And in my opinion, and the reason I left the forum, is that it had to do with that time period. Yet when I voice my opinion, not taking aim at any person, you address me back by name – a couple of times. All I could think is – well, there it is – that feeling that only certain opinions count and I was being chastised for voicing mine.
I find it very telling that he chose not to share his story regarding sct until after the fact and also that he has not since posted to the forum. I’ve seen you two complement each other so many times and yet he didn’t share? And stated he wasn’t sure that he ever would? Why? But he did ask this question.
You bring a wealth of information to this forum and you are needed. But so are Alice and Yeuhan and Dick S and Pam H and With Hope and Dawn and Laurel and Jessicah and D.U. and Jim C and Lee Spurgeon and Soapy and every individual, including me. CIDP patients are a small community and we need each other.
I truly respect you as a researcher and as a parent. I think your love for your daughter shines and is why you find so many great articles to bring to the forum – you appear to always be looking for information that will help you to know what to do on her behalf. I can’t imagine how difficult it is to watch a child go through this and you have my respect, prayers and admiration in how you handle this with her.
I was not singling you or anyone else out, I just voiced my opinion in response to a question asked.
BTW – I do agree that the sct protocol will be approved by FDA – eventually. I personally just didn’t feel I had the time to wait – I continued to deteriorate in spite of the various treatments/protocols tried. I did a web search on clinical trial timelines and could only find one for the development of a new drug (not a new procedure) and found that it takes 12 years to develop and get it through FDA. I suspect this will take much longer! The clinical trial for sct for CIDP started in March 2005. It is ending Phase I and moving into Phase II (there are 4 phases) ([url]www.clinicaltrials.gov[/url] – search on CIDP). By the time this gets through all phases and through FDA approval, well, I just didn’t have that kind of time! From the pm’s I receive, I suspect others here feel that same way. Additionally, once it moves into phase III, there is a control group, so you aren’t guaranteed the sct procedure at that point. Time just wasn’t on my side …
I do appreciate your well wishes and hope you appreciate mine for you and Emily.
AnonymousOctober 25, 2011 at 10:07 pm
Linda – I’ve sat at my computer for a few minutes now trying to decide how to respond. I’ve never been one to back down. I’ve never been one to not speak my mind. At the same time though – I’m really, really, really, sick of the bickering.
I think I’m gonna just reference Yuehan, as I think he is a wise man.
“Negativity begets what? Uh, gee more negativity. It’s true, for me, that electronic media rates on the lowest scale possible of good ways to communicate anything.”
With that said…
I really truly do wish you have a nice evening. Halloween is coming up! I love this time of year…
PS, If anyone doesn’t want to read what I write then please feel free to add me to your ignore list. My feelings won’t be hurt.:cool:
AnonymousOctober 26, 2011 at 1:33 am
Wow, I felt like the battle lines were being drawn. The transplants vs. the no plants. I wondered where I might fit in? lol I want the transplant and my Neuros don’t. They say it is too risky for me at this time. I guess I’m just the “confused plant”. But I do know one thing for sure and I want to be very clear about it: You all have brought me understanding, empathy, sincerety, and hope at times when I didn’t think I could hold on. I am so glad it appears that everyone is coming to an understanding. This is a great place.
AnonymousOctober 26, 2011 at 4:45 am
[FONT=”Microsoft Sans Serif”]I decided to contact my friend, the one on high dose curcumin and he wrote me the following:
[I]Alice just saw this note…..
6 months tumeric everyday and no IVIG, my neuro is excied as am I. Actually it feels normal to be normal. I most recently had a cold and then slight cidp will kick in, however, I just keep the curcumin protocol and literally the next dose gets rid of it for me.
Vanessa can testify that it has been a miracle for me
I knew within the first 48 hours that curcumin was working, actually less than that. I can expand further over the phone sometime. Life extension “super bio-curcumin” 400mg. I take 12 pills per day with food; game changer. not the 800mg with bioprine– the regular super bio curcumin. I’m benching 295 and doing plyometrics and running 5k(twice) and eliptical 3-4 times per week.[/I]
He had been on IVIG for a while, 2.5 years I think. He felt so badly, he had contacted me to ask about SCT. We spoke and he went to NW for an evaluation. Unfortunately, and to his severe disappointment, he was denied entry. He returned to his home state and resumed IVIG. Then, some months ago, he contacted me and cautiously told me the success he was having with curcumin, specifically the one without pepper…
We have stayed in touch and what he writes above is his response to my asking for an update. I don’t [I]think[/I] he is interested in posting here in any steady way but if anyone were interested, I could ask him if he would communicate directly to them.
Hope this helps.
AnonymousOctober 26, 2011 at 11:28 am
Thank you Alice!! I have an immunologist in Miami. I am going to email her and ask about this. She has me on a supplement protocol and antivirals. I want to make sure that this won’t interfere with anything, adding in turmeric. That is such good news about your friend.
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