Stem Cells

[helsbells]

Ben I am getting equally more excited and nervous for you - I bet the mood swings are cycling pretty fast round there. Hmmm I can't rest ever, with that level of excitement going on what chance do have LOL - continued best wishesXXXXXXXXXXXXXXXXX

 

[Rockt]

First let me say that I'm excited by the concept of stem cell therapy for CFS. I think the idea of resetting the system, really via nature, as opposed to toxic drugs, is beautiful. And even though Dr. Cheney has this secrecy thing going on, he has tried at least as hard as any doctor to help CFS patients, so I have to think the positive reports on his website are realistic. Sure he might be highlighting the best case scenarios, but they're still success stories, meaning success, (improvement), is at least possible with stem cell treatment.

However, and I really hate to cast this shadow of doubt, but it's there so I'll voice it: we live in an increasingly unscrupulous world, where greed is all the motivation some people need to take advantage of the sick and desparate. People have reportedly become well or very much improved from treatment at the Panama clinic and therefore I lean towards believing in their legitimacy. And as Dipic pointed out, they did not hesitate re the cell count thing. SO.... is there any way of taking the guess work and the "I feel" statements out of the equation and making SURE that what they are injecting are actual cord blood stem cells? It should be easy for them to prove, or guarantee, the validity of the substance they use and it is very much within our rights as potential clients to ask for that proof.

With that guarantee in hand, I'll continue working on my gut and be on the plane with the group in late fall.

 

[Sushi]

I'm writing second-hand as a close friend of one of Cheney's patients who has been to Panama three times for stem cell infusions. Cheney went down before he sent patients and scoped everything out to his satisfaction--quality control, screening of donors etc. He also accompanied the first couple of groups he sent there to oversea their treatment.

He does do rigorous testing before and after infusions. My friend stops in his clinic on her way to Panama for the "pre-tests," and he follows up with many tests afterwards. Of course, it is too early to understand fully what the patient response is, whether new cells will get "infected," etc., but my friend who was really sick is willing to gamble and if necessary keep going for "boosters" if that is what it takes. Her life was at stake.

Bottom line, I think Cheney is doing his very best to monitor and learn from his patients' experiences.

Sushi

 

[Rockt]

Sushi, how is your friend responding to the treatment?

 

[undercover707]

Hi,
Anncavan and I also attended the stem cell meeting. They had really smart and high up stem cell researchers talking.

- you could be injecting cancerous material into you with the stem cells. there is that risk.

rrrr

I think they said, that we don't know, whether they give us in the clinics, what they are claiming. I think they also mentioned, that embryonic stem cells have been proven to cause cancer (Which we already knew.). They did not say that adult stem cells are causing cancer.

Dr. Jeanne Loring said she would analyse a stem cell sample for free. I would be really happy, if dipic or M0joey, who will be going to Panama in a couple of weeks, could collect a stem cell sample and send it to Dr. Loring. Everybody going after them to panama could be reassured, that they receive the types of stem cells that they are supposed to receive. I know, that Dr. Cheney already checked the clinics, but I think it would be great to get evidence from other scources too.
When RRRRs Mom asked a question about our group going down to Panama. The panelists did not answer directly to her question, but started a movie, that warned against stem cell tourism. The movie did not contain anything that makes the Panama clinics look bad. It warned against the stem cell tourism in general. It pretty much said that none of the therapies offered are proven to be safe or effective and that there is a lot of fraud going on.
I believe that there is a lot of fraud going on in the scene. But this does not mean, that all clinics are bad. We just have to be careful.
After the meeting had ended, the three of us, who are interested in CFS/ME, sat together to catch up. One of the panelists, Doug Sipp, who was also featured in the 60 minutes on CBS, was standing close by and we threw a lot of questions at him. He listened carefully to our questions and did his best to help us. We told him about Dr. Cheney following up 20 patients, that where sent to the cellmedicine.com clinics. We asked him, how we could get a scientist interested in picking up Cheney's results. Doug said, Dr. Cheney would have to publish his results in a peer reviewed journal, to raise the attention of the scientific community.

It appears to me, that a lot of this depends on Cheney. Should we write him an e-mail, where we tell him about our interest in stem cell treatment? We could say that

• we are appreciating and are relying on his follow up with his stem cell patients.
• we would like him to give a as detailed report as possible on his blog this summer
• we want him to publish the results in a peer reviewed journal

Molly told me, that there has been between 20 to 30 people showing interest in this treatment. We should all write our names under the e-mail to Dr. Cheney. If I was Dr. Cheney, I would be greatly motivated by a letter like this

I also think that everybody who is going for stem cell treatment should do careful follow up, ideally with a doctor who would be able to publish the results in a peer reviewed journal. Does anybody know a doctor who would be also interested in following up with patients?
Some doctor would have to define follow up criteria and collect the data. Anncavan had some great ideas about this.
I will contact my physician. I know that they have a research coordinator who we might be able to get interested in this. My physician e-mails back and forth with Dr. Cheney, so they could even cooperate with Dr. Cheney.

So long,
David

 

[hubcap_halo]

I'm writing second-hand as a close friend of one of Cheney's patients who has been to Panama three times for stem cell infusions. Cheney went down before he sent patients and scoped everything out to his satisfaction--quality control, screening of donors etc. He also accompanied the first couple of groups he sent there to oversea their treatment.

He does do rigorous testing before and after infusions. My friend stops in his clinic on her way to Panama for the "pre-tests," and he follows up with many tests afterwards. Of course, it is too early to understand fully what the patient response is, whether new cells will get "infected," etc., but my friend who was really sick is willing to gamble and if necessary keep going for "boosters" if that is what it takes. Her life was at stake.

Bottom line, I think Cheney is doing his very best to monitor and learn from his patients' experiences.

Sushi

Thanks Sushi,

Are you at liberty to reveal any of the rigorous tests or even routine labs Dr. Cheney performs before escorting patients to Panama?

 

[mojoey]

Hey everyone,

I was wondering if anyone planning on going to Panama (with or without the group discount) has received notice of what exactly you're getting in your transfusions and intrathecal? How many million cord cells, what ratio of CD34+ to mesenchymal (or any other type of cord cell)?

Dipic--I tried PMing you this question but haven't gotten a response yet.

warmly,
j

 

[Sushi]

Thanks Sushi,

Are you at liberty to reveal any of the rigorous tests or even routine labs Dr. Cheney performs before escorting patients to Panama?

I'll check with her. Some things that Cheney shares with his patients he doesn't want "passed on"--I think due to the real risk of distortion and the risk that "unreliable leaks" might undermine his plan to publish results. I'll ask her what I can post. She has OK'd me giving updates on her treatment and progress. So I'll check in with her and report back.

Sushi

 

[kamina]

Hey everyone,

I was wondering if anyone planning on going to Panama (with or without the group discount) has received notice of what exactly you're getting in your transfusions and intrathecal? How many million cord cells, what ratio of CD34+ to mesenchymal (or any other type of cord cell)?

Dipic--I tried PMing you this question but haven't gotten a response yet.

warmly,
j

Hey j, sorry.

This is Dipic (Ben). You may recognize this old name too.

I did get your message there are a couple problems - first being that the past couple days have been extremely rough (moreso than usual) for me. Family issues came up and there was a lot of emotional upset. It's really drained me at a point when I obviously especially did not need it to. As a result, I'm having (even more) issues with cognition then usual.

I've also gotten PM's from about 5 other people and also would like to go over these things with my pops, but both of our time and energy and limited. I'm very overwhelmed right now especially since there are many little things that need to get done before my trip (which is merely a week away now.)

The other major problem I'm having, and the result of which is why I am posting on a long since retired account is that, this morning when I tired to log into my normal account (Dipic), a message popped up saying:

You have been banned for the following reason:
spam

Date the ban will be lifted: Never

I believe this was a simple accident (likely caused when a mod tried to ban an actual spammer I reported a couple days ago), but unfortunately I can't access anything, including PM's on that account.

Hope you understand. I want to try my best to get back to you and everyone else who has contacted me, but that is the only promise I can make... to try my best. I have what I feel are my own moral obligations to help everyone I can here but obligations to myself (my health) and my family always have to come first. Again, I hope you understand.

Ben

(oh, hey, just as I finished typing this and hit reply, a PM popped up from Cort saying he unbanned me. so that's one problem out of the way at least. thanks Cort! )

 

[dipic]

Okay, back on the right account.

 

[Rrrr]

ben,

yes, it is important to be as rested as possible before the SC, right? and i hear that cheney tells folks to do just about nothing for months AFTER the SC, too. to lead a no drama life. that is going to be hard on most of us, as our daily lives tend to be so crisis-driven. at least mine is. but for the SC to take, i think cheney's advice is essential...?

sushi/anyone: do you know when cheney plans to publish?

rrrr

 

[bluebonnet]

ben,

yes, it is important to be as rested as possible before the SC, right? and i hear that cheney tells folks to do just about nothing for months AFTER the SC, too. to lead a no drama life. that is going to be hard on most of us, as our daily lives tend to be so crisis-driven. at least mine is. but for the SC to take, i think cheney's advice is essential...?

rrrr

That's the exact word cheney has used..."essential". He says it is essential to rest after the procedure.

 

[hubcap_halo]

I'll check with her. Some things that Cheney shares with his patients he doesn't want "passed on"--I think due to the real risk of distortion and the risk that "unreliable leaks" might undermine his plan to publish results. I'll ask her what I can post. She has OK'd me giving updates on her treatment and progress. So I'll check in with her and report back.

Sushi

Thank you very much, Sushi!

 

[JanisB]

Two New Developments

First, Dallas
I learned that the medical Director Dr. Joe DiRuzzo is a chiropractor. For me that's a NO GO leaving Panama the No. 1 contestant for my funds. Also learned that Dr Joe thinks I should have 10 treatments which raises the price. Here's a link for anyone interested: http://www.pnri.net/origins.html

Joey, you might tell Doc about this on Monday.

Second, two more Cheney patients.
I learned from a patient of Dr. Kracht in Quackertown PA that two of his patients who also see Cheney did stem cells and say they got absolutely NO results. Wish I had more details on their condition.

 

[mojoey]

Hi Janis,

Good to know.

Just wanted to add that I believe that patient had posted on those 2 patients previously in this thread, so these are not an additional 2 patients that got no response.

 

[JanisB]

Just wanted to add that Spitfire already posted on those 2 patients previously in this thread, so these are not an additional 2 patients that got no response.

Oops! I missing that posting. Sorry

 

[jenbooks]

Just as much a concern as, are you getting stem cells, and enough stem cells, is what else are you getting?

If you look at the India patents (I forget the doctor's name--Amy Sherr went there)--she puts hormones, growth hormones, and other stuff in there along with the embryonic stem cells.

I wouldn't want ANYthing else in there. And of course I think embryonic is risky.

 

[mojoey]

I'm pretty sure we're getting all cord cells Jen and no cocktail of supplements. Possibly some drugs if you have any adverse reaction but Molly said it's quite rare.

As for the exact protocol (how many million and breakdown between mesenchymal and CD34+) I'm trying to figure that out as we speak.

 

[taxdoc]

I initially had stem cell therapy last May and right after the therapy all of my allergies disappeared. Within 6 months, the allergies came back. I had a terrible time for the first three months, but slowly got better. I was able to hold down for the most part a full time job and I am now in Panama awaiting my second set of stem cells. I saw Cheney on Friday and for the most part I have improved best on the echocardiogram. I am going to email his nurse for the exact numbers. The KPS scoring he did was overly optomistic as he guessed my range from 75-85. It is no where near that as I have no tolerance for any exercise and still completely relapse on the weekends. Personally, I think that stem cell therapy can improve the immune system, but until they get a true handle on handling XMRV, it will be of value, but somewhat limited.

 

[dsdmom]

Taxdoc,
Thanks so much for sharing your experience. It's great to hear directly from people who have had this done, especially one of Cheney's patients, who we don't hear from often. Good luck and let us know how it goes.