Stem Cells

[mojoey]

Rrrr,

Interesting you mentioned that, because I am thinking about seeing Peterson again immediately after stem cells. I know one top CFS researchers has already said gcmaf would have a place, not before stem cells, but after. Taking it before may be too much for oversensitive cfs patients

 

[Rrrr]

and there is speculation, of course, that taking antiretrovirals AFTER stem cells may be a BAD move, that it could hurt the new cells.

all this is so frustratingly new that no one knows. it is all guesses. literally just (educated) guesses.

makes me think that maybe the best approach is to do nothing but the stem cells. period.

 

[Rrrr]

I filled out the new patient form on the panama clinic website 4 or so days ago, and then today, July 7, 2010, i just got a call
from a doctor fr the panama clinic. the Q and A are below. this info will be nothing new to those who follow the thread, but here it is anyway:

- What sort of results are you seeing with CFS patients after a stem cell treatment?
A. More energy. Less brain fog. They are following 2 nonCheney patients and 33 Cheney patients. They call them every month, then 1 yr out. There are two non-responders.
- I am xx yrs old and have been very sick for 20 years. Will I see results?
A. They can't guarantee results, but they are seeing results with older patients.
- What sort of reactions are people getting immediately after the treatment (1 hour after, 1 day after, 1 week after)? Should I expect to feel dizzy or nausea or anything after a treatment or the following day?
A. Expect to feel very tired and sleepy, high temp, need to rest. Can last 2-3 wks. After that, people had more energy, fogginess goes away. They do not feel you need to rest 3-5 months after the treatment.
- Should I stay in bed for the whole week I get treatments or can I go out to restaurants and on walks?
A. I forgot to ask this.
- Do you give patients an IV bag of saline after the stem cell treatment? I heard that helps push the stem cells into the cells.
A. they have found it does not help, so they do not do this.
- what supplements do you recommend before and after stem cell treatment?
A. start stem kin before, and take after, too. (buy from Aden products.)
- cost?
A. $17k, and $600 for intra-spinal injection. For group rate, talk to xxx from their clinic (who did she say? I'll just talk to Molly)
- can I tell my cousin who is a big time doctor in NYC that I need help to pay for this treatement? If I tell him, he will want to investigate the clinic. Will this put the clinic at risk at all?
A. Yes, I can tell my cousin. His investigations will not put the clinic at risk.

 

[SaraM]

Did any one of these patients report improvement in the muscle pain?

 

[hubcap_halo]

Hey hubcap_halo,

I'm mixed on hgh. I would like to know definitively whether hgh would increase, maintain, or decrease retroviral load. My doc has mentioned a few times he doesn't use injectible hgh until viral loads are managed.

Hi mOjoey,

Thanks for the good word. Your question is a good one. I respect your doc's position.

Since my post I've received emails from ME/CFSers who've tried HGH injections, but gave them up for lack of positive results.

I was told Dr. Cheney was using HGH injection in the past and would imagine he would have it as part of his pre stem cell protocol if it were helpful.

 

[hubcap_halo]

Hey all... just got home. Newark airport was an absolute nightmare again. Hope the wear of the travel doesn't expunge or diminish what potential benefits these stem cells might (or might have) brought. All I know is that it's going to take awhile to recover from this whole deal.

Enter bleeding gums: Now, I brush my teeth regularly and do a good job making sure I get all the gums. Despite this, I've always had a problem with my gums bleeding since I've gotten sick, mostly with the bottom front ones. Suffice it to say, I was a bit shocked when on the night after my second infusion I noticed that they were not bleeding at all.

I probably wouldn't have even noticed if it weren't for the fact that pure fact that those bottom gums bleed nearly every single time I brush my teeth. After examining them for a moment, I went over those bottom front ones again a couple times with my electric toothbrush and was able to get part of my gum to bleed under one of my teeth. Again, usually they all bleed, and that's with one swipe through. "Wow", I thought to myself, now thinking back to what the doctor had said about my veins, and wondered if this was a rapid affect or merely strange coincidence.

On the night of the day I had received my fourth and final infusion, I tried this experiment again. This time I went over my bottom gums like normal; no bleeding. I went over them four more times, applying more pressure and... nothing. Mind blown? Eh, not exactly, but I was certainly intrigued, just not entirely convinced it was due to the rapid action of the stem cells.

Finally, on my last day visiting the clinic, I was in the waiting room and met some nice folks; a woman with MS who was receiving treatment with who if I remember correctly were two of her family members. She had told me that she had already noticed very mild (but noticeable, nonetheless) changes already after her treatment thus far. (Now mind that she had already been receiving treatment for 3 weeks there, as that's their protocol for MS.) Details of her "very mild changes" I wasn't able to attain, unfortunately, as our conversation was cut short as we had to leave and they (or she) had to go in and receive an infusion.

Another thing I have noticed that I have heard is a common side effect of SC treatment, is increased appetite. Sure enough, I certainly experienced (and continue to so far) just that.

Mere coincidence? Result of other factors (being in a different place, exerting myself much more than normal, etc)? Or are these the result of the stem cells? Can't say for sure but I thought it was interesting enough to share and see if others who go experience these or similar things, not to mention stories and the assertion of the doctor that this is a common phenomenon with this treatment.

Anyway, this is probably the last you guys will hear from me for a good while; hopefully not too long (or forever ...nah), but certainly I do not want this financially, not to mention physically and mentally expensive trip to be all for naught. I'd like to get a little more out of it than just a line of resilient gums and easier to poke veins. :Retro wink: :Retro tongue:

Anyway... long day... long couple weeks... (hell, long past several years...) I am going to pop a couple Klonopin and rightfully pass the f--- out.

Night all.

Ben

Obviously, the most important thing, for myself and for you guys interested, is to see whether or not I actually gain any improvement.
Until (hopefully) then!

WELCOME BACK BEN! You did it!
Strengthened gums in one day. If that's where your improvement starts then we'll celebrate it. No bloody gums. And increased appetite is a kind of common sense sign of increasing health, right?

Good to here the MS woman was already experiencing gains, however mild. More than one doctor at the Panama Clinic told me most ME/CFS patients require 2 or even 3 months before seeing significant improvement. So now your job is to TAKE IT EASY.
Best to you, Ben.

 

[jenbooks]

Rrr, did you ever talk to Carol Sieverling (sp?). I believe she's a long time Cheney patient who got stem cells twice (? not sure but I think so) and is recovered. You're such a whiz convincing impt folks to talk to you maybe you could find out more from her.

 

[runner30]

(name removed at behest of the company) stem

hi, is there any chance of cancer down the road with(name removed at behest of the company) stem cells?

thank you.

 

[Rockt]

I've been wondering a lot about pre and post SC procedures. Cheney's SCF's, Riordan's Stem Kine, saline, HGH, etc. I'm concerned that there hasn't been enough research, (it's sooo early in the SC timeline). I wonder if doing nothing other than improving gut ecology and maybe gentle detoxification might be the safest route? Stem cell thereapy is sort of a very natural procedure - yes, it's palying with nature, but the stem cells go in the body and do their thing - they go to where they're needed. I just think that maybe, until more research definitively determines otherwise, a conservative approach might be best. I don't think Molly did anything extraordinary. Did Ben? I don't recall hearing him say much about his prep. It will be interesting to see how he responds - VERY well, I hope.

 

[mojoey]

Can we get a roll call of everyone planning on going to Panama? I'm planning on going Sept 13 along with a few other CFS patients that do notpost here. I will post on their behalf. I know that over half the patients going with Group #1 are lyme patients, many of whom I am in contact with. I will also post on their behalf since they don't post in this forum.

I was thinking about how we're going to accumulate data from these groups and the likelihood that folks simply refuse to step up to the plate. This is the opportunity of a lifetime for many of us, not just those interested in stem cells but those who may become interested in stem cells for years to come. I can count on one hand how many people have openly accounced they are going and I'm not sure why that's the case--perhaps it's because they simply want to avoid the caustic side of this thread or any possible interrogation. Or perhaps it's just inconvenient because of their condition, in which case I hope that changes after stem cells.

I would encourage those that are going to at least post that they're going so that we can PM you later on. Even better if you post an occasional update. You will more than likely get many questions mixed in between the well wishes ranging between concern and outright skepticism. Whether you reply to any of these is completely up to you. Just please let us know that you are going and how you do.

 

[aquariusgirl]

Carol Sieverling is recovered??
That's good news.
Would love to hear more about that.

 

[mojoey]

Hey Jen, I'm pretty sure Carol is not recovered.

 

[jenbooks]

I am sorry! I have to find the email about the recovered patient, I mixed up with Carol, who has received stem cells and lives in Dallas, mold capital of the world.

When we drove through Dallas on the way to NM in late May, I felt sick for about a 60 mile radius, and burst into tears. I've heard Dallas has horrible mold, and I'm sure convinced it does along with pollution and all those methane gas mines around Dallas/Ft Worth. How anyone could be healthy there, stem cells or no, is beyond me.

 

[soulfeast]

Is there any danger using the stem kine indefinitely? Is there a protocol? ( like 6 weeks on then so many weeks off.. or only for so long)

And can you take them and not get stem cells?

 

[soulfeast]

My thoughts are with you, Ben!

Are names being collected for people interested for future trips?

About the vaccines.. can someone explain what is needed. This terrifies me a bit.

 

[Rrrr]

hi jenbrooks,

i have not talked to her, but i am trying to reach others who have done stem cells.

rrrr

Rrr, did you ever talk to Carol Sieverling (sp?). I believe she's a long time Cheney patient who got stem cells twice (? not sure but I think so) and is recovered. You're such a whiz convincing impt folks to talk to you maybe you could find out more from her.

 

[Rockt]

Good point, Mr. Kite. And, couldn't they post anonymously out here like most of us do? They wouldn't have to worry about legal action or other strong-arm tactics - they'd just be posting on an informal forum.

 

[Chris]

Hi, Soulfeast; if you look back on this thread you will find some discussion from myself and Mr. Kite on the possible dangers of taking Stem-Kine--or any stem cell mobilizer--in too high a dose for too long. The two small scale studies done--look at the website( www.stem-kine.com ) for the links--used a dose of 2 x 2 per day for 14 days; we noticed that the mobilization of one line of cells peaked at around 7 days, and then began dropping off again, suggesting that the delivery system was being over-driven. This can produce serious consequences when a much more active mobilizing agent is used, one only used under medical supervision for serious conditions.
I emailed the company suggesting that a pulsed dose might work better, say 3 capsules per day for a number of weeks followed by a pause; they replied that was possible, but had not done the research and were not prepared to advise. They suggest a dose of 2 per day, without specifying a time limit. My personal feeling is that it is probably a good idea to limit the time one takes 2 per day, and either cut to 1 or just take a break for a week or two to give the system a recovery break, and that is what I have been doing; so far my experience has been positive, without being revelatory--my blood pressure is down, my heart rate is down, I feel generally better and a bit more energetic. So I am continuing an irregular dose schedule, with periodic breaks of at least a week.
You have to realize that this is a personal decision, backed by no serious research, but it seems to be working OK so far. But finally you have to make your own decision, based on your own research and thinking!

I can think of no reason why you should not be able to use Stem-Kine without getting an infusion of stem-cells; you are simply mobilizing, swinging into more energetic action, your own stem cells, the ones your body makes all the time in limited numbers. Molly did report that the Panama clinic recommended using Stem-Kine before and after clinic infusions--not surprising, since they come from the same group of people, headed by Neil Riordan. Looking him up in PubMed might reassure you a bit--he has a lot of publications in the field, and collaborates with a substantial number of researchers at various other institutions.
Good luck with whatever you decide to do! Chris

 

[Tembo]

Ben - all the VERY best to you - I hope this stem cell treatment does the trick for you

 

[foggyfroggy]

Who's going and when?

Can we get a roll call of everyone planning on going to Panama? I'm planning on going Sept 13 along with a few other CFS patients that do notpost here. I will post on their behalf. I know that over half the patients going with Group #1 are lyme patients, many of whom I am in contact with. I will also post on their behalf since they don't post in this forum.

I was thinking about how we're going to accumulate data from these groups and the likelihood that folks simply refuse to step up to the plate. This is the opportunity of a lifetime for many of us, not just those interested in stem cells but those who may become interested in stem cells for years to come. I can count on one hand how many people have openly accounced they are going and I'm not sure why that's the case--perhaps it's because they simply want to avoid the caustic side of this thread or any possible interrogation. Or perhaps it's just inconvenient because of their condition, in which case I hope that changes after stem cells.

I would encourage those that are going to at least post that they're going so that we can PM you later on. Even better if you post an occasional update. You will more than likely get many questions mixed in between the well wishes ranging between concern and outright skepticism. Whether you reply to any of these is completely up to you. Just please let us know that you are going and how you do.

I am hoping to go, but can't do the September trip - it'll have to be later this year or next year sometime. $$$$, y'know Plus, that will give me time to assess how things are going for other folks, since I'm classic M.E. plus IGeneX positive for Lyme and 50 years old, and may be less likely to see improvement for those reasons. That being said, 'caustic' won't bother me a bit; one thing I've learned over the course of this dd is to have a thick skin and to just let things go. OK, I guess that's two things I just hope the special rate will extend to later groups.
Gretchen