Stem Cells

[Sushi]

I was told the infusions would last 2 hours and would need to be done everyday by the guy at the clinic who approved me to go. I'm hearing/reading a lot of experiences and they seem to all be different, some say its done through their spine, others say an IV, (which is what I was told), and some are saying they had some form of Anesthesia for the treatment. Maybe its different according to how ill you are?!?

Just to clarify my friend's experience, she only received IV infusions on her first two trips to Panama. On the 3rd, she did receive an intrathecal infusion (she had 3 IV's and one intrathecal), and yes, there was a local anesthetic for the spinal infusion. She was worried that she might get the horrific headaches that many people get with spinal taps, but she didn't. She thinks that she had no problem with the spinal infusion because they used a tiny needle.

Sushi

 

[undercover707]

I think it is important, what exactly they put in us.

Let's not kid ourselves here: the only reason people will continue to the go to the clinic is the results, not whether one particular sample is shown to contain actual CD34+ and mesenchymal cells. The clinic is now well aware of the broadcasting tendencies of the patients going. They know the CFS patients will be posting their results in one of the largest and most openly-accessible CFS online communities and the lyme patients will be posting on lymenet. There is no way to guarantee that you are not receiving scam cells because if there is any time that they will ensure we're getting the real deal, it is now with the initial groups going because they know how much future revenue is riding on us. So the answer to David, Ann, and others is yes, I will try to get a sample (along with some others) but the logic that that will ensure patients in the future will not be scammed doesn't fly. Like Mr.Kite said, there will always be a leap of faith since this clinic isn't domestic. We can only try to minimize it.

Hi m0joey,
first of all: Thank you for getting a sample. I appreciate it.
I also think that you are right about the point, that the clinics know about our broadcasting tendencies. It would be definitely not good for the clinics to make any mistakes on us, since it will all be posted on the internet.
I disagree on your point that CFS patients only care for the results. From Dr. Cheneys report (1 year follow up) and some patient reports (Molly 8 month out of treatment), we really only get an idea about the short term side effects of this treatment.
After digging a little deeper in stem cell research It think that is very unlikely that long term side effects will occur if they really give us an infusion of CD34+ and mesenchymal stem cells (Please know that I am obviously a layman and don't hold me responsible for this thought).
But what if they give us embryonic stem cells? There is a report on the internet where they detected tumors in a boy, who received embryonic stem cells, 4 years after the infusion. It is known, that embryonic stem cells are likely to cause tumors.
I also want to say, that I think it is very unlikely that cellmedicine.com is a scam. I expect that Dr. Loring will tell us, after she tested the stem cell samples that m0joey collects, that the samples are exactly what they should be. But I think we should use as many resources as possible to check on the cellmedicine.com clinic in panama. This is about our health.
Trust is good, control is better!
Thanks again for collecting the sample. Your are doing me (and maybe others who think the same way as me a big favor.

 

[dhearns90]

If we do take a sample and an expert verifies that it is in fact CD34++/mesenchymal stem cells, I don't think that would automatically legitimize the clinic. While it would be nice to know we are not being injected with saline, to me, the issue is whether (or to what degree) injecting these stem cells as the clinic does can actually help with diseases. I have heard some experts say that it can, and others that it cannot. So far all we have to go by are patient testimonials. The published articles by the clinic's staff unfortunately do nothing to prove the efficacy of the infusion process.

 

[SaraM]

I get injections even in the back of my head for my spine problem every now and then which is not really bad. Pain wise I do not think stem cell injections can be very different. Last time I saw my D.O she said she was thinking of injecting fat stem cells into troubled areas.

 

[gapsych]

More information.

You might want to look at this BMJ article about stem cell clinics. It cites a website to find out information about clinics who do stem cell research.

http://www.closerlookatstemcells.org//AM/Template.cfm?Section=Home

http://www.bmj.com/cgi/content/extract/340/jun18_1/c3271

Here is a "Sixty Minutes" episode that talks about stem cell therapy.

http://www.cbsnews.com/video/watch/?id=6408474n&tag=contentMain;contentBody

http://www.cbsnews.com/video/watch/?id=6408476n&tag=contentMain;contentBody

http://www.cbsnews.com/video/watch/?id=6408430n&tag=contentMain;contentBody

http://www.cbsnews.com/video/watch/?id=6408427n&tag=contentMain;contentBody

All of these videos are downloadable.


You can probably guess my stance on this issue, but that is not why I am posting. I am just providing some information for informed consumers.. Take what you want from it.

 

[Michael Dessin]

Yea, gapsych, we do know your stance...anything a pharmaceutical company doesnt sell you wont support.

Anyway, good luck Dipic, we are all pulling for you!!!!

 

[gapsych]

Ben knows he has my support. When I talked to him, I told him it was his decision and I can only wish him the best. I did not try to talk him out of going but did express my concerns. He was okay with that. I am scared for him. I think he is an incredible person, smart and articulate and would love to have someone like him as a son.

Mike you are overgeneralizing about me. I back science. I back critical thinking and that includes Big Pharma.

I have never posted here, but felt this situation is important enough for me to say something.

Don't you dare say I don't support Ben. I just want him to be safe.

gap

 

[Michael Dessin]

Gapsych...blah blah blah...

Mr Kite...very good points!

 

[dhearns90]

We do know that cord blood stem cells help with many blood and bone marrow diseases and immune problems, including many kinds of leukemia and other cancers, so we just have to extrapolate from that. To the extent that CFS is an immune disorder, we can hypothesize that cord blood sc also might have some benefits for that condition. But there are no guarantees, and there probably aren't likely to be any time soon, just like there aren't when it comes to any other treatment for CFS.

I think that a full stem cell transplant is required to treat leukemia or other blood cancers. Have these diseases been cured through simply injecting stem cells? I'm not sure. The people I have spoken to who have experience with stem cell research seemed to think that just injecting stem cells won't create any lasting effects. Granted, none of them were familiar with CFS.

 

[soulfeast]

This is interesting. I cant copy any of it... do my best to summarize the jest of it.. taking adult stem cells and making them embryonic.. I think.. using a retro virus to shuttle into cells..??

http://www.scientificamerican.com/article.cfm?id=interactive-your-inner-healers#

 

[jenbooks]

Sheesh. A lot of well intended but irrelevant talk filling up the void.

We really just have to wait to see how people do. We can speculate endlessly.

 

[mojoey]

Completely agree with Jenbooks. Let's keep this thread focused.

I've been trying to confirm that the protocol details that Panama has given us is the protocol that Cheney patients are getting. Once I do so, I'll post the details.

 

[dipic]

Hey all! Just wanted to let you know I made it to Panama alive (...though not entirely unscathed.)

For those who only care about the stem cell therapy, you may want to skip over this post as I'm just going to briefly (lol, lightly proofreading this now; sorry, clearly that didn't turn out to be the case) describe my experience traveling. First SC infusion is Tuesday.

Made it to the hotel by about 12am (Panamanian time - which is only an hour behind where I live, so thankfully obviously not much jet lag.)

Compression socks are a must if you have moderate-severe POTS (I'd reccommend them even to those who have a mild case.) Those were awesome. Also helped that I had 3 seats to myself to lay across on my 5 and a half hour+ flight from Newark, NJ to Panama.

The G-Force's were bad. Like, terrible sensation on my every part of my body. My heart and brain were especially affected. It took like an hour and a half just to reach max altitude on our Newark-Panama flight. Felt like I was on a roller coaster decline that whole time. Not fun. And when the plane stopped, it hit me like a ton of bricks and I felt like... urgh... can't even think of the words to describe it.

Worst part of the entire trip was by far the flight to Newark. Newark's airport in my experience is a giant POS. They are not wheelchair or handicap friendly as far as I can tell. Every worker we ran into spoke broken English and it was thus almost impossible to communicate with them. The plane from NY to NJ was dinky and didn't have an "Iron Chair" (thing that takes handicap persons down the isle to their seat.) So I had to do a lot of walking (something I have not done much of the past year and a half I've been bedridden... or even before that.)

Furthermore, I had to take a tram from one side of the airport to the other to get to my gate... not wheelchair accessible. Again, more much unneeded exertion. Oh, and I had to stand after passing through security while they wheeled around my wheelchair (took a few minutes.)

And keep in mind this was only the first leg of the trip. (Sorry for going all over the place, my brain is a mess right now.)

Anyway, woman who met us at the airport in Panama and the man who met us at our hotel (contractors for the Stem Cell Clinic) were very nice and accommodating. Ambulance that was supposed to pick me up and take me there (preplanned) came 20 minutes late. Not the clinic's fault but aggravating as hell.

I passed out as soon as I took my meds and got in my bed (about 12:30am). Got about 6 hours of sleep. My body feels like it had been tossed in a laundry drier and left to tumble for a few hours. :worried: I feel like hell... but according to the EMT's my vitals are good and I'm gonna be fine! LOL. (FML.)

Anywho, some of you may be like "wtf are you doing, GO REST!" I wish I could. Been trying all morning/afternoon. More worn down my body and fried my brain gets, the harder it is to rest or sleep. Hopefully the typically reported hypersomnolence will kick in some time after the infusions and will help with that.

Again, first infusion is Tuesday (blood is taken Monday - tomorrow.)

This may be my last update for now. I don't know how I will react to the infusions but obviously I should be resting after I start receiving them and who knows what kind shape I will be in. I can (try :Retro redface to give a very brief update, perhaps with the aid of my old man. Otherwise, sometime if/when I get home I will try to let you all know I made it back alive. Else, hopefully my pops can let you know my status somehow.

And then, if things go the way I think we all hope... obviously I will then be able to give a more detailed explanation of the treatment sometime in the future. Keep in mind, however, this may be months from now.

Well, keeping the hope. I appreciate everyone who has been supporting and looking out for me.

Good luck to anyone who may be going for SC treatment before I can report back. Obviously, I will do anything I can to alert people asap if something goes awry or seems amiss while I'm down here, but obviously those aren't my expectations (or else I sure as hell wouldn't be here putting myself through this agony! :tongue

Take care all,
Ben

 

[dsdmom]

Ben,
Thanks so much for letting us know how you fared - sorry the trip was so difficult. NY to NJ sounds like it was a nightmare! I recently flew to Miami and was astounded at how much standing they wanted me to do out of the wheelchair - it takes a ton of energy to do what you did, so yes, please go rest!!!

Good luck - I will be thinking of you and hoping for the best. Let us know anyway you can how you are doing with it all.

Good vibes going your way!!!

 

[maryb]

Good god Ben that triop sounded horrendous but well done in coming round so positive from it, just wanted to say I'm really rooting for you on this one, hope a lot of good comes from the trip. Good luck.

 

[Rrrr]

ben, ben, ben!! WE ARE ROUTING FOR YOU!!!

and joey, thanks for doing all that research!!! (ben's doing the on-the-ground research, as did molly!)

best,
rrrr

 

[jenbooks]

Ben, it's so exciting you got there. I'm sure the flight was the hardest part.

 

[Sushi]

Ben,

So glad you got through the flight ordeal. Hopefully, now you can just let them take care of you!

Sending very best wishes.

Sushi

 

[mojoey]

Ben,

Really glad you made it there ok. Hope you get copious amounts of rest and don't feel pressured to update us.

warmly,
joey

 

[mojoey]

One thing I've been very confused about is who exactly is in charge of determining what mix of stem cells is best for CFS patients. My initial impression was that Cheney was mostly dictating this, but I've done a lot of digging and it turns out that it's more of a collaborative effort between Dr. Cheney and the owner of the clinic, and actually it seems that most if not all of the alteration happens within the clinic and later becomes reported to Cheney.

I think this is opposite from what most of us assumed was going on.

Regarding specifics, I've been informed that the clinic's owner and medical director currently thinks the threshold is at around 30mil expanded cord cells for clinical benefit. (Expanded means they have been previously expanded under culture conditions and frozen) In addition are "fresh" unexpanded cord cells which he thinks to have the potential to multiply once they're injected, so although the unexpanded cord cell count going into both the IV and intrathecal is about 500,000-1mil each, this can quickly become tens of millions. It is not clear just how much they replicate.

So with that said, this is the exact protocol that the clinic is quoting as the current "standard CFS protocol that all cheney patients are receiving":

3 infusions of 3 mil, 4.5 CD34 cord cells (all expanded)
1 infusion of 3 mil mesenchymal + 1 fresh cord of CD34 (~1 million unexpanded)
1 intrathecal injection of 3 mil mesenchymal + 1 fresh cord of CD34 (~1 million unexpanded)

So if you add it up, the technical grand total of stem cells we'll be getting is 30.5 million, but ~2 million are unexpanded so it has the potential to become far more.

Please understand that the protocols may change as the clinic learns what's best for us. Autism and MS patients have been getting intrathecals as well. Cheney is telling his patients it is optional for now because the long-term risks are too unknown, but since it is being recommended by the clinic to all the CFS patients applying now, the clinic must believe it is pretty safe.