Stem Cells

[Rockt]

mOjoey, thanks for your informative and up-to-date posts. Please, if you're up to it, keep 'em coming. I don't know how you do it, but you are one tuned-in dude.

I think of you and Dipic and how young you are and I hope so much, for all of us, but especially younger people like yourself, that stem cells are the answer. According to the limited info. Dr. Cheney has released, younger people have the best chance of recovery. So keep up the good research and again, if you can, please keep us posted.

 

[jeffrez]

Hey Mr.Kite,

Amy (healthcarehacks I assume is the blog you're referring to) did take antibiotics before she went to India. Also, many of my close lyme friends actually met Amy before she went to India because she was seeing the most prominent LLMD in CA, the same LLMD that I saw for a good 6 months before I realized antibiotics wouldn't take me anywhere but down. I've also spoken with her several times, and from her symptoms it does seem like she was more of a classic chronic lyme patient than CFS. So no, although I haven't met her in person before/after SC, I have reason to believe that yes she is real.

However, I can't say the same for the second lyme patient that went to India and blogged about feeling regaining her ability to walk, Monica. I met her in person when we were both getting biophoton treatment in Germany. She was still in a wheelchair at the time.

I'm trying to get more feedback from patients seeing Dr. Gordon and his associates. Not that I suspect what David is saying is untrue, but it would just be good to get multiple "definite" statements from GMA to ensure that that is, in fact, his definitive statement.

David--Thanks for the statement from Dr. Tribaldos. I do have to point out that there seem to be some inconsistencies in her statements. I assume it was she that said that they've only been following CFS patients for a year, but the medical director of the clinic said that they did SC on 9 CFS patients even before Cheney sent a single one down there, and Cheney is coming close to the 12-18 month mark. Also, I think if Dr. Tribaldos truly understood CFS via working with Cheney, she would know that lyme has been detected in many CFS patients, especially Cheney patients. Please recall Cheney's public article below:



It may not be that far-fetched to extrapolate that some of the patients that he sent down to Panama did test positive for lyme, but I hope we'll find out when he releases his results (although I highly doubt he'll release all of his data, only the data most relevant to the point he's trying to prove.)

The fact is: we simply don't know whether stem cells can eradicate infections. Although XMRV tested negative for previously pos patients, testing is still in infancy and negative culture does not mean negative infection. Quite possibly, the load was lowered by regaining immunity. I think the wisest course of action is to try to lower infections in some way possible before going to err on the side of caution. I also think it's safe to say most lyme patients HAVE done antibiotics, some very long-term. CFS patients have done antivirals, some antibiotics for lyme and co-infections, and possibly immune modulators. I think all of these are wise courses of action to take both before and after stem cells (although you don't wanna take anything after stem cells that have been clinically shown to reduce your WBC such as ABx and some AVs--immune modulators seem like they'd be a good shot in the arm both pre- and post- stem cells, and antivirals pre-.)

Yeah, I'm just saying you can't always believe everything you read on the internet. Just because something's on the internet doesn't mean it's true, or the whole story. There is a LOT of money to be made from stem cell treatments, and where there is money to be made, there are often unscrupulous people around.

 

[hubcap_halo]

Hi all,

Got an email from hardest working woman in show business, Molly, saying she will out of pocket (with business and normal life
until Monday June 14th. Feel free to continue to PM or email her, she'll answer you when she returns.

 

[kcleejackson]

When is the "First Group" leaving for Panama? Is there anyone else besides myself who is bedridden and planning on going to do this treatment?

 

[mojoey]

There is no set date yet, but I assume it will be August or September unless something derails/delays it.

I spoke with Molly again yesterday, and to expand on what hubcap_halo said, she is planning on taking a break after getting a flood of emails/PMs in the last few weeks. I don't expect to see her posting here again....in fact her conversation with me reminds me of what I said earlier: for a variety of reasons, it is very difficult in general for recovered people to come back to a forum, post about their recovery, and stay long enough to satisfy the extent of our curiosity. Molly, Mike Dessin, Carter Burke etc are simply a unique breed of people willing to sacrifice a full transition to "normal" life to help patients left behind in whatever ways they can, but even they are human, get overwhelmed by the task, and eventually need to move on. I feel incredibly grateful that forums like this allow us to reach out to them and vice versa in some form or another.

No one's posted this yet, so I thought I might. It's a statement from the Stem Cell Institute re: closing of the CR clinic:
http://www.prnewswire.com/news-releases/statement-from-the-stem-cell-institute-regarding-decision-to-close-costa-rican-operations-95788554.html

"The Stem Cell Institute announced today that it proactively and independently made the business decision in early June to close its clinic and lab in Costa Rica and centralize all operations in Panama City, Panama. This decision was made voluntarily.
This decision, which came after careful consideration, was reached in response to Costa Rica's unpredictable and arbitrary regulatory landscape. During its time in Costa Rica the company operated in full compliance with all existing laws and regulations. Unfortunately, however, the recent lack of clarity regarding adult stem cell treatment regulation in Costa Rica proved to be too great a risk for The Stem Cell Institute to continue its work in that country."

 

[jeffrez]

There is no set date yet, but I assume it will be August or September unless something derails/delays it.

I spoke with Molly again yesterday, and to expand on what hubcap_halo said, she is planning on taking a break after getting a flood of emails/PMs in the last few weeks. I don't expect to see her posting here again....in fact her conversation with me reminds me of what I said earlier: for a variety of reasons, it is very difficult in general for recovered people to come back to a forum, post about their recovery, and stay long enough to satisfy the extent of our curiosity. Molly, Mike Dessin, Carter Burke etc are simply a unique breed of people willing to sacrifice a full transition to "normal" life to help patients left behind in whatever ways they can, but even they are human, get overwhelmed by the task, and eventually need to move on. I feel incredibly grateful that forums like this allow us to reach out to them and vice versa in some form or another.

No one's posted this yet, so I thought I might. It's a statement from the Stem Cell Institute re: closing of the CR clinic:
http://www.prnewswire.com/news-releases/statement-from-the-stem-cell-institute-regarding-decision-to-close-costa-rican-operations-95788554.html

When I spoke to Molly, she said she was going with us, and she even said that she would be willing to assist me (and others) if it was an issue of an assist-person not being able to go. I don't know how many emails she's getting, but it just sounds a little strange to now hear you say it's overwhelmingly difficult to post to a forum when a person is willing to actually get on a plane and go to central america with the whole group. Most of us can post, and we're still sick. Can you clarify what is so overwhelming about it, especially for a person who has recovered and is actually going with us? I don't really understand what you mean by all that. Has someone heard that she is not going?

 

[mojoey]

I'm pretty sure she's still going. I was merely relaying her decision to take a prolonged break from posting and providing general framework for why. If you're curious about the specifics I suggest you ask her directly.

 

[jeffrez]

I'm pretty sure she's still going. I was merely relaying her decision to take a prolonged break from posting and providing general framework for why. If you're curious about the specifics I suggest you ask her directly.

Just one more thing that doesn't really add up in all this. When I was in graduate school, my professors taught me always to look for the contradiction. That's where the text generally starts to unravel. There are so many contradictions here that the whole thing has unraveled about a dozen different ways so far. I have to say it just makes me very uncomfortable.

Is all this secrecy and "behind the scenes" "relaying" really necessary? The "general framework" you provided does not really conform to the other stated information and facts. That signals to me that something is a little "off." I was trained to be highly inquiring and critical, and when things don't add up my alarm bells start sounding. Whatever is actually going on here I don't know, but this is all giving me an extremely funny feeling.

 

[InvertedTree]

Just one more thing that doesn't really add up in all this. When I was in graduate school, my professors taught me always to look for the contradiction. That's where the text generally starts to unravel. There are so many contradictions here that the whole thing has unraveled about a dozen different ways so far. I have to say it just makes me very uncomfortable.

Is all this secrecy and "behind the scenes" "relaying" really necessary? The "general framework" you provided does not really conform to the other stated information and facts. That signals to me that something is a little "off." I was trained to be highly inquiring and critical, and when things don't add up my alarm bells start sounding. Whatever is actually going on here I don't know, but this is all giving me an extremely funny feeling.

I'm also getting concerned and having some red flags about all of this...

I hope Molly is okay.

 

[mojoey]

I simply do not see the "red flags" or "contradictions" between 1) Molly no longer wanting to post here because she has a normal life now and 2) Molly still assisting and going with the group to Panama. This distinction is getting to the point of a basic logic disconnect between us. Molly is doing this a favor to us: her goal was to get a group going and she now has enough people. Anything more is her right and our privilege, and certainly not her obligation and our entitlement.

 

[InvertedTree]

I simply do not see the "red flags" or "contradictions" between 1) Molly no longer wanting to post here because she has a normal life now and 2) Molly still assisting and going with the group to Panama. This distinction is getting to the point of a basic logic disconnect between us. Molly is doing this a favor to us: her goal was to get a group going and she now has enough people. Anything more is her right and our privilege, and certainly not her obligation and our entitlement.

I'm not sure who you are accusing of being "entitiled" nor why you have an issue with people expressing concern about this treatment. So it's also not okay to express concern about Molly? I have no idea why you take such attitude with people on this thread who have expressed legitimate concerns. The indirect judgement is getting old.

 

[mojoey]

Suffice it to say this is the last I will say about the matter. I had no idea I was "judging" anyone by voicing my opinion that recovered people are not obliged to post here and none of us are entitled to their continuing contribution to this or any forum. Also, if you have concerns about Molly, I believe she is easily reachable.

If anyone can provide proof that I've objected in any way to anyone expressing concerns about the treatment, I'm all eyes and ears.

I think it's fair to say some of us are just on different pages here.

Good luck everyone seeking information about this therapy,
j

 

[InvertedTree]

Suffice it to say this is absolutely the last time I'm posting on this thread. I had no idea I was "judging" anyone by voicing my opinion that recovered people are not obliged to post here. I think it's fair to say some of us are just on different pages here.

Good luck everyone seeking information about this therapy,
j

I think it's more the tone that is coming through on some of your posts. It might not be intended. If it wasn't then my apologies.

I am concerned about several things and thought this was the thread to express them on but my concerns have nothing to do with Molly except that I know she has put a lot of work into this and I hope she is doing okay.

 

[mojoey]

No need to apologize. I just have rarely had issues with being misconstrued, even on public forums, except for these recent episodes so it's all a bit new to me.

Molly is fine. In fact, she's been trying to reach you and Mr.Kite all day

 

[mojoey]

and it would probably be easier to sort these things out when they arise without someone jumping in to derail the process or compound the confusion with beliefs, opinions, etc. that aren't directly relevant to the concerns.

I agree Mr.Kite, but the fact of the matter is Molly has chosen not to post here at least until 6/14. If you guys wanted to sort these things out when they arose you could have chosen to contact Molly first. Airing concerns about a person initially on a public forum when she is easily reachable by phone just seems to be a universally riskier approach.

In any case, I hope you guys get all your questions and concerns answered. I have many myself.

 

[InvertedTree]

No need to apologize. I just have rarely had issues with being misconstrued, even on public forums, except for these recent episodes so it's all a bit new to me.

Molly is fine. In fact, she's been trying to reach you and Mr.Kite all day

I'm glad to hear that Molly is fine. I haven't received any messages from her but would love to talk with her again. I seem to have misplaced her number.

It seems emotions/stress/etc.. are running higher these days at least for me with trying to figure out the best course of action to take. Maybe that's the reason for the misconstruing (new word).

 

[kcleejackson]

I have to say I joined the chat room in here the other day and also felt attacked. I think everyone has a right to their opinions but lets face it, none of us like when others think apart from what we do. Its hard for me to admit but I find it difficult for other people to not agree to some of the things I am so passionate about.
This illness makes us all frustrated not to mention we are all on edge due to the energy required to gather information and facts to make the best decision so we can just live a semi normal life.
We all need to remember we want the same thing here and I think we all have a deep empathy for each other knowing that each of us are struggling in the same or very similar situation. <3

 

[aquariusgirl]

Wow. A whole group of PWCs off to Panama to get stem cells. That is so wild.

Good luck. You're all pioneers and I hope it works for you.

And pls come back and tell us if it does!

 

[ukme]

All the best everyone, pls keep us posted

 

[Rrrr]

hi folks,

for those of us just getting on to this thread now, can someone summarize or point to a post that summarized it all already? i'd really like to have a phone chat with someone to get the low down. anyone up for it? in the absence of that, here are my questions:

- how many treatments are needed to see results (does one show some results)?
- what is the cost per treatment?
- how long do we have to stay in panama for a single treatment?
- where would we stay and what is the cost for that?
- when is the group going?
- when do we need to commit to signing up?
- any consideration to those with multiple chemical sensitivities (re: housing and the clinic itself)?

i am sorry to ask all these questions but reading 400 posts would be too much for me. again, if anyone can direct me to a single or number of post that already summarizes all this, or if anyone is up for a conversation, that would be great.

lastly, if my only current living space is a home with mold, would it NOT make sense to do the stem cell treatment at this time? should i secure safe housing first, before doing the treatment? i know that is ideal, but it is proving impossible. (FYI: finding new safe housing has been my #1 issue for 2 yrs now: with my really bad chemical sensitivities, i can't find any!)