Stem Cells

[dipic]

Ah, if only, Mr.Kite. I am one of those constantly wired and fried types of ME/CFS. I no longer have "crashes", as I am stuck in a perpetual one. In an unfortunate series of incidents, the scales were tipped so far in the wrong direction that they seem to have broken. When this happened I found myself in a hole. Over the past year and half that I have been stuck in this state the hole has only grown deeper and deeper and the rate at which I descend has only increased as time has gone on. When I overexert myself, the hole is dug deeper. Anything I attempt to do to climb up (and hopefully, eventually one day, out), such as sleep or relax, I find is superseded and then instantly surpassed by the power and rate at which I am declining (or more appropriately, at least with how I feel, "plummeting", at this point.)

That's why I want to go on this trip as soon as I can. Because, as it is, I don't see myself getting better over time; in fact, quite the opposite if the last year and half+ are any indication of what is to come. There may be a point where I hit a wall... or more appropriately for my analogy, a floor. A floor where I can no longer go any deeper. My doctor thought and hoped that that would happen months ago. Let's assume that ever happens: how long will it take and to what means? Will I then be too sick to travel and receive treatment? Am I already too sick for that? Should I wait it out and see if (pray) that I hit that floor that I also have to pray I'm currently not far from? And then should I wait to see if I can recover a bit over time on my own? Maybe wait for more advancements in treatment during that time? How long will I have to wait? And in the meantime, how much potentially irreversible damage will I be acquiring? That's assuming this silly floor even exists.

OR... should I risk it all at this moment for the possibility to potentially pull myself out of this hole I'm in; to stop this illness from progressing any further; to stop any more possible damage (to lord knows what; my heart, brain, CNS, cells, etc?) from being done?

That's where I'm at now. This is where I stand... miles below the surface of a terrain that was unhealthy enough to live on before... and even further from clouds of suitable health I once glided on for the better part of my life.

To bring things back down to earth a bit and step away from the analogies and what I wish was actual hyperbole and not reality: I can't relax. I cannot rest. To do anything less than I already do now, aside from that which I need to do to survive (eat, drink, hygiene), would be to do nothing at all. I would literally just have to lay here and suffer the torment of the multitude and array of bizarre stimuli, discormfort, pains, and things that cannot even be put into words that this illness induces in my body and impresses upon my mind. Not only that, but it means I am alone. Alone with my mind. An often times pessimistic, worried, scared and scarred, fried mind jumbled with faded memories of a past life, both good and bad, but mostly overrun by newer, terrible and often frightening ones. I've been to dark places in my life and my mind doesn't have a lot trouble going to them, be they memories or imagined. It doesn't help that I am a very visual person and a creative (but overactive) imagination.

What I am trying to say is that, to pull back and away, even for brief periods of time is hard. If was forced to do nothing but, I would probably lose my sanity. My laptop is my escape. I cannot read books anymore, cannot watch TV programs due to lack of concentration. Takes me hours just to write up posts like these, and so I try to refrain to. But again, this is my escape; and while I know that it's slowing destroying me (or at least aiding the illness in doing so), I don't see any other viable option (besides getting treatment that would allow me to climb out of this hole.) So for now, I need this. This keeps me sane.

Rock and a hard place? Ha. That doesn't seem to come close to doing it justice.

...So what do I do?

Hell if I or any of you know... but thank you for letting me vent, all the same.

 

[firefly]

Hey dipic,
man, I'm sorry, it sounds rough.
Just one question: I think at some point you mentioned David Bell was your doctor? What does he think of all this? What is his advice?
He strikes me as a smart man and a genuinely good soul and perhaps even someone who might be able to pick up the phone and call Cheney, or the clinic in Panama, and get a little bit more info that might put your mind at rest on this.
Apologies if you've already tried this, or if there's some other piece of info I'm missing. It's just what came to mind reading your post.

 

[jenbooks]

Dipic, go get your stem cells. It's very likely to help you. You're young. And then you can figure out what else to do (treatments to kill pathogens).

 

[Rockt]

Dipic, firefly just echoed most of my sentiments. We all just want the best for you. I think ff's suggestion of talking to Dr. Bell, if you can, is a good one. I've seen him - he didn't really have any answers but I think he is a good man who wants to help.

This is so easy for me to say, (type), but I think, and this is just my opinion, that you have to find a way to take it easy, relax, only do what you can and, (again just my opinion), go on with your trip to Panama. You've planned it, you're up for it and you're in that age group that Cheney reports the most benefit for. Even if you only get a little better, you'll give yourself some breathing room, you can try to retrain yourself to take it easier, (again, easy to say, harder to do), and maybe go back at some time in the future. Again, I only hope the best for you.

PS Sorry if I upset you with my earlier comment - I was just trying to say that I don't care if they make money or who makes money as long as the treatment makes us better.

 

[dipic]

Hey dipic,
man, I'm sorry, it sounds rough.
Just one question: I think at some point you mentioned David Bell was your doctor? What does he think of all this? What is his advice?
He strikes me as a smart man and a genuinely good soul and perhaps even someone who might be able to pick up the phone and call Cheney, or the clinic in Panama, and get a little bit more info that might put your mind at rest on this.
Apologies if you've already tried this, or if there's some other piece of info I'm missing. It's just what came to mind reading your post.

Just talked to the man for about 30 minutes. Convinced me to go. Don't want to say much more than that. It's iffy, all around. He doesn't know whether or not it's a wise decision but, again, somehow he convinced me to go. I trust him. I will go.

The part I bolded couldn't be more true.

Thanks firefly.

edit: Thank you too jen! And rockt, no problem man, you didn't upset me at all. Was just in a mood, you know. I was actually worried I might have upset either you or Mr.Kite (which doesn't seem to be the case.) Speaking of which, thanks Mr.Kite for not taking it personally.

Anyways, I appreciate your comments a lot guys.

As I said, I've made up my mind. It will probably be the most terrible, grueling, unpleasant experience I will have to endure (maybe hopefully not...?), but, eh, if the rest of my life up until now (mainly the time I've been sick) hasn't prepared me for this, what else would have? And if somehow I don't make it through this whole ordeal, let it be known that at least I tried.

Peace,
Ben

 

[kcleejackson]

Dipic I feel for you. I am having the same struggles and fear that I will only decline. As of right now I am only able to keep clean, eat, drink and periodically sit up for 1 or 2 mins at a time. Watching tv, getting on my laptop, pretty much anything mental or physical is a joke at this point. I cannot comprehend being able to get out of this miserable hole and actually be able to function. Its a dream of mine to drive, to swim, or just be able to sit on the porch swing and not fall over in pure exhaustion and vertigo spins.
I woke up today with a feeling of certainty that I had to go to Panama asap. A year ago I was 90% bedridden and now I am 98%. What if I keep going down? I even said to my mother who has had this 20 yrs, I cannot do this much longer, if I dont go get treatment this is going to kill me, this disease from heart problems, or one day I am going to wake up and not be able to take it anymore mentally.
I have the same fears we all do. The "What If's" are overwhelming but the "What If Not's" are starting to take control now...

 

[dsdmom]

Stem cells reverse blindness caused by burns

Completely unrelated to CFS, but just one more thing that is being helped by one's own stem cells:

Stem cells reverse blindness caused by burns
http://news.yahoo.com/s/ap/20100623/ap_on_he_me/us_med_stem_cells_blindness

 

[firefly]

Good luck, Ben. Glad to hear you are going and feeling good about it. Sending you prayers and good vibes.
On the sensory overload bit. I hear you. I'm a total news, computer, email junkie. That said, I've found that silent, breathing meditation, when I am able to muster the will to do it, has been incredibly beneficial to my state of mind and is often modestly helpful for my symptoms too. It's tough for me to do. My personality has always been the complete opposte of the Zen buddhist, meditative mindset. More IMPUT, I want more IMPUT! But it's been a good discipline. If you haven't already, I highly recommend the book Full Catastrophy Living by Jon Kabat Zin. He's a researcher at Boston U. med school and is steeped in the Buddhist tradition of meditation. The book is amazing and has changed my perspective in many ways. There's some good theoretical chapters in there, but more important, there's some solid, straightforward, easy to implement advice on how to start a mindfulness meditation practice. Who knows, it might make for a good addition to your rest and recovery period once you are back from Panama.

In the meantime, all best and safe travels. Looking forward to hearing about the adventure.
Firefly

 

[Rrrr]

the article about stem cells helping eyes (see above) said patients needed a medication to prevent rejection of the stem cells. do we need that if we go to panama? i guess not, as i have hear no talk about it...

 

[anncavan]

My question is if she were really so interested in testing the validity of the stem cells, why would she ask us to get a sample? She's a researcher with clout to speak with the production team at panama herself and organize a collaborative effort; we're patients with no authority to handle specimen samples and insufficient knowledge to minimize contamination during transport. I assume she probably knows all this, so the fact that she would ask us patients to obtain samples for her to judge the legitimacy of an entire clinic raises a few questions.

Hey m0joey, great question. Here's my take. A member of the audience asked the panel about the Panama clinic as well as Stem Cell for XMRV/CFS. None of them had heard of either the clinic or using stem cell for CFS. There are just SO many clinics and uses out there right now, the CIRM and ISSCR have only scratched the surface in being able to identify them let alone know anything about their practices. Dr. Loring's offer seemed extremely sincere. It was kind of a last ditch - "OK if you are going to go, please at least have what you're being injected with tested first." My feeling is since we have such a large contingency here, it would be a nice safeguard. either someone who's there getting the sample or someone who's planning to go asking for it ahead of time...

 

[dsdmom]

the article about stem cells helping eyes (see above) said patients needed a medication to prevent rejection of the stem cells. do we need that if we go to panama? i guess not, as i have hear no talk about it...

Hi Rrr....the article actually says "Since the stem cells are from their own bodies, the patients do not need to take anti-rejection drugs." (Bold mine)

 

[Rockt]

Hey m0joey, great question. Here's my take. A member of the audience asked the panel about the Panama clinic as well as Stem Cell for XMRV/CFS. None of them had heard of either the clinic or using stem cell for CFS. There are just SO many clinics and uses out there right now, the CIRM and ISSCR have only scratched the surface in being able to identify them let alone know anything about their practices. Dr. Loring's offer seemed extremely sincere. It was kind of a last ditch - "OK if you are going to go, please at least have what you're being injected with tested first." My feeling is since we have such a large contingency here, it would be a nice safeguard. either someone who's there getting the sample or someone who's planning to go asking for it ahead of time...

I think this makes a lot of sense, Anncavan, and with so many potentially going to Panama for treatment, it would be in the clinic's best interest to comply. If they provide a sample and the results are satisfactory, everyone here considering the treatment gains confidence and is more likely to go. If the clinic refuses to provide the sample, red flags go up and fewer will go ahead with the treatment.

 

[jenbooks]

Dipic, the flight might be grueling but the treatment probably won't be that bad...and I really think you will improve. But then you can't take that for granted. You'll need to figure out what pathogens are on board and start treating them.

 

[Sushi]

Just talked to the man for about 30 minutes. Convinced me to go. Don't want to say much more than that. It's iffy, all around. He doesn't know whether or not it's a wise decision but, again, somehow he convinced me to go. I trust him. I will go.



Hi Dipic,

I just saw your thread. Let me tell you the experiences of my friend who went to the Panama Clinic. The first time she went she was just about as sick as you are. She said that they really take care of you--you can arrange for a wheelchair to meet you at the airport, then take you to the hotel. The hotel they recommend is very close to the clinic and they will take you by wheelchair. The infusions last about 15 minutes and they usually give them every other day.

She said it was hard, but she managed. She also had other patients who went with her and they all helped each other. I'd bet you-all will be a team and do the same.

Super best wishes,
Sushi

 

[kcleejackson]

Just talked to the man for about 30 minutes. Convinced me to go. Don't want to say much more than that. It's iffy, all around. He doesn't know whether or not it's a wise decision but, again, somehow he convinced me to go. I trust him. I will go.



Hi Dipic,

I just saw your thread. Let me tell you the experiences of my friend who went to the Panama Clinic. The first time she went she was just about as sick as you are. She said that they really take care of you--you can arrange for a wheelchair to meet you at the airport, then take you to the hotel. The hotel they recommend is very close to the clinic and they will take you by wheelchair. The infusions last about 15 minutes and they usually give them every other day.

She said it was hard, but she managed. She also had other patients who went with her and they all helped each other. I'd bet you-all will be a team and do the same.

Super best wishes,
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?!?

 

[mojoey]

All the CFS patients are now getting intrathecal injections (in the spine) but you can decline this if you wish. This is done with local anesthesia, but no anesthesia is added to the IV transfusions. Anti-rejection drugs are also not used in either the IV or intrathecal.

 

[mojoey]

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.

 

[Rrrr]

dsd mom was right, the article on stem cells for the eyes said the folks did not need antirejection meds because it was their own stem cells they were getting. so i inferred that if someone were getting stem cells from another person, there would be a need for anti-rejection meds.

does anyone know more about why we don't need those meds if we get someone else's stem cells, as is happening in panama?

and thanks, joey, for all yr input on this thread!

 

[Rrrr]

How Embryos Fight Retroviral Infection

this was posted on another thread, but thought it could be useful here, too. -- rrrr

http://www.sciencedaily.com/releases/2010/06/100624112308.htm

Science News

How Embryos Fight Retroviral Infection

ScienceDaily (June 24, 2010) Some viruses insert themselves into the host's DNA during infection in a process called retroviral integration, causing several diseases, including AIDS and cancer, notes a Texas A&M researcher who specializes in fetal diseases. However, stem cells that give rise to the early embryo and yolk sac fight back, inhibiting further infection by aggressively silencing the invading viral DNA, says Michael Golding of the Department of Veterinary Physiology and Pharmacology.

The work of the researcher was recently published in Cell Stem Cell.

Early mammalian embryos actually possess three stem cell lineages: ES (embryonic stem), TS (trophectoderm stem), and XEN (extraembryonic endoderm), which give rise to the fetus, placenta and yolk sac respectively, the Texas A&M researcher explains. Using the mouse as a model organism, Golding and his colleagues demonstrate that the mechanisms silencing gene expression are different between each of the three stem cell types.

"Much like a closed book cannot be read while an open book can, the DNA encoding genes can either be tightly wound up and silent or in a relaxed, open, active state," Golding explains. "The mechanisms that control this gene packaging are called epigenetic as they represent a level of regulation that is above or 'epi' to genetics."

The study shows "retroviral silencing in XEN cells is epigenetic in origin" and that "the three cell lineages of early mammalian embryo have vastly different viral silencing strategies as well as different capacities to suppress retroviral activity."

To examine the validity of a common assumption that these stem cells use similar mechanisms to silence retroviruses, Golding infected the mouse embryo stem cells with mouse leukemia virus (MLV) and monitored the virus' activity.

ES cells showed a progressive decline in virus activity, while TS cells had a constant level of virus activity. XEN cells, however, exhibited extremely aggressive and rapid silencing of virus activity, according to the study.

"Epigenetics is an exciting new field of research which is altering the way we think about fetal nutrition and exposure to environmental chemicals," Golding adds. "This discovery that all three stem cell types of the early embryo utilize slightly different mechanisms to control gene expression has profound implications for how we diagnose and treat fetal diseases."

 

[mojoey]

"Umbilical cord blood stem cell transplants are less prone to rejection than either bone marrow or peripheral blood stem cells. This is probably because the cells have not yet developed the features that can be recognized and attacked by the recipient's immune system. Also, because umbilical cord blood lacks well-developed immune cells, there is less chance that the transplanted cells will attack the recipient's body, a problem called graft versus host disease." - http://learn.genetics.utah.edu/content/tech/stemcells/sctoday/