Stem Cells

[helsbells]

Hi Rrrr

the last one is a deal breaker for me too, if im reacting madly to the accomodation would it still work?

I so sympathise with you it took us two years to move to what we thought was safe housing but my reactions here so far have been worse than at the old spot!

At the risk of sounding like a broken record - I find the MCS is more difficult to manage than the ME (and i would say I am severely affected) just difficult to move forward but I feel stem cells are more doable than meds - I hope anyway. Good Luck

 

[Hysterical Woman]

SNIP

Then there is the issue of his Cell Signalling Factors. This seems a bit far-fetched to me and is it necessary for stem cell therapy to be successful? According to Molly's experience, she had the treatment without CSF's and seems to have gotten great improvement, (and possibly a better response because she doesn't report the hypersomnolence that Dr. Cheney's patients all get). But who knows? This is all VERY new.

My gut feel, (and this is just my opinion), is that Dr. Cheney's heart is in the right place and he, like a lot of us, see stem cell treatment as the only current viable treatment for all the multi-faceted dysfunction going on with CFS, that can offer significant help, or even a cure. The theory of re-setting the immune system is a good one. I also think that he's not opposed to making significant amounts of money at his work. Is this a bad thing? That's a personal philosophy call. He has studied to be both an MD and PHD and researches long and hard to fight this disease - that doesn't come free.

He does have some far out theories though. For example, he states that Vit. D3 is bad for CFS. Every medical organization in North America is touting its benefits as a cancer and MS preventative. But maybe it IS bad if yo have CFS. I still take it. Again, who knows. In the end, it's encumbent on all of us to make informed choices, (which I guess is why we're here), and to realize that any doctor is only one person, with their own opinions, mindsets and human fragility. They are not gods, nor are they infallible. I went to Dr. Lerner for a year and got no relief, but others have walked out of his office cured, (I like Dr. Lerner, btw, and hold no ill feelings - my problem is not viral and he couldn't help, that's all).

In the end, I don't think there's a definitive answer to the question, just opinion. If anyone knows anyone who has been or is a patient of Dr. Cheney's please weigh in with their experiences - second hand info. would be better than none at this point.

Hi Rockt & All,

I am not a patient of Dr. Cheney's, but a good friend of mine is (we met at a support group I started in 1997). She has made good improvements under Dr. Cheney's care, but she did not get stem cell transplants due to how long she has been ill, her age, and the fact that she is responding to his other treatments. I would like to be able to talk her into becoming a member of this forum, but she is currently trying to balance continuing treatment, picking up activities that she has not been able to do for years, and dealing with family issues (weddings, funerals, other close family members illnesses, etc.) In addition, she is a very private person and only belongs to the list of patients who see Cheney (on yahoo?), and from what I understand doesn't post to that.

So, FWIW (I am a 3rd party, and an Hysterical one at that :-0), I can say that I know she has been on the following treatments: cell signalling factors, immunovir (and sometimes inosine), artesunate, wormwood, B12 (injections & SL), magnesium (injections and capsules). I also believe she was on some treatments for gut issues in the past.

Good Luck,

Hysterical

 

[Rrrr]

Mr Kite

Thank you for taking the time to answer all my questions.

I think I can't make it with the first group, but maybe with the 3rd set (November-ish).

In terms of MCS considerations:

1. Pesticides. I worked for 3 months in Panama when I was healthy, in my 20s. And I stayed 2 months in Costa Rica just a few years ago. There are a wide variety of bugs, scorpions, etc. I fear a hotel will spray regularly. (Would a clinic?)

2. The diesel trucks and motorcycles in Costa Rica were bad (and I imagine Panama will be the same) and on all the major and minor road, in the cities and in the rural areas. Tons of diesel fumes. No getting away from them.

3. I found that in both Costa Rica and in Mexico people burn things in the open air all day and night, especially on Saturdays. They burned trash (which includes plastic bags) and vegetation. Not sure if it will be the same in Panama. In Mexico the burning went on all night, and if you were downwind from it (I was), you'd be inhaling toxic burning plastic all night long.

I think these above concerns may be specific for what block of town you are staying on, literally. So it is best if someone with MCS can report back to us.

As Mr. Kite asked, IS ANYONE WITH MULTIPLE CHEMICAL SENSITIVITIES (MCS) OR ANYONE AWARE OF CHEMICAL ISSUES GOING IN THIS FIRST OR 2ND GROUP? Please let us know, so we can check in with you upon yr return.

Lastly: Two key questions re: CFS and stem cells

- DO WE KNOW HOW PEOPLE WHO ARE HYPER SENSITIVE TO ALL DRUGS/MEDS REACT TO STEM CELLS?
- DO WE KNOW IF ANYONE WITH MCS GOT STEM CELLS YET, AND HOW THE STEM CELL TREATMENT THUS IMPACTED THEIR MCS (did it make them less reactive)?

I'm excited folks are going. Thank you for blazing this trail for me and others. I hope to follow in yr footsteps.

Rrrr

 

[Rrrr]

Oh, and one more MCS consideration: All cleaning supplies were fragranced/scented in Costa Rica. (It was impossible to find dish soap that was not "knock you over and kill you" full of fragrance. I used an unscented bar soap to wash dishes (amazing that I found that!), and I found they sold plastic bags of baking soda, and used that for cleaning.) And expect the average person to be fully scented -- both men and women -- wearing perfume and cologne.

Of course, now that I think about it, this is no different from any U.S. city!! It is just that now in some U.S. cities we have Whole Foods we can go to to buy unscented products.

Can Molly tell us: Does the clinic have an awareness about MCS? (One can hope, can't one!?)

Rrrr

 

[readyforlife]

Who is Molly???????????

 

[Misfit Toy]

I am glad this thread is still going. I went to my doctor the other day. He sees many CFS patients who go to Cheney. He sees 2 that had the stem cells, through Cheney and both of them did not get better at all. I just wanted to let you know. I hope no one wants to come at me for this. I think everyone should know not just Molly's story, but others too. My doctor is not against stem cells and thinks they are wonderful, but for these 2 patients, there was absolutely no improvement.

This is why I will need to study it more, hear more, etc before forking out that kind of money.

 

[redo]

I know a guy who collected 30.000 $ though friends and the community around his friends, to go to Thailand for stem cells, and it gave him nothing.

It's 45 pages here, so I haven't read through it all. But if it hasn't been posted, then I recommend taking a look at this:
http://www.youtube.com/watch?&v=ZtWIy5BDiKk

 

[mojoey]

I think the group(s)--hopefully plural--will end up cultivating a very powerful pool of data in the CFS community. I am as sickened as the next person about the gag order Cheney has on his patients, and I do not expect his study results in the summer to be entirely forthcoming. So far, he said 2 patients have been nonresponders, and now it's somehow slipped through the grapevine that there are at least 3.

Until we have non-Cheney patients go and we collect data on all these groups of 10+, we will probably never know the fullest extent of the truth. All these bigwigs have an agenda (or bias), but we will openly publicize the bare naked truth. I wish there could be another way that we could know exactly how many have responded well, how many haven't, and what the difference is between them, but I just don't think that will happen while Cheney is the sole monopolizer of data. I truly hope we can extract more information before group #1 goes; otherwise we are going on what is significantly limited information compared to the data group #2 will have (at least 10 more data points from group #1).

As for the MCS question, I would contact Molly about that. No use speculating. She can ask the owner how MCS patients have fared.

 

[Rrrr]

has anyone with CFS done the stem cells treatment who has NOT done cheney's pre-stem cell protocol?

is doing cheney's pre-stem cell protocol a prerequisite to getting better?

i know judy mikovits was concerned about XMRV killing the new stem cells people get and/or people's cells getting RE-infected with xmrv after the stem cells (i think she means their own bodies would re-infect, but maybe she mean we could get re-infected from an outside source/person?)

anyone heard more about this?

i know WPI is looking into stem cells and talking to cheney.

 

[jeffrez]

has anyone with CFS done the stem cells treatment who has NOT done cheney's pre-stem cell protocol?

is doing cheney's pre-stem cell protocol a prerequisite to getting better?

So far it almost seems like a prerequisite to not getting better. ;-)

 

[mojoey]

Molly didn't do anything Cheney required (artesunate, gut protocol, or CSF) prior to going.

 

[aquariusgirl]

Mr Kite

Pls chill...I have been following this thread and been turned off by some of the negativity. I do not see any indications that anyone is trying to censor anything & I resent your implication to that effect in your post to spitfire.

I'm sorry to come out and address you personally like this, but I have bit my tongue numerous times already on this thread.

I just want to be able to read the INFORMATION that people have to share without getting riled up by silly, petty, energy-sapping sniping.

I don't need you running interference on every post. You raise my blood pressure.

ENOUGH ALREADY.

 

[Peggy]

Rrr, you might want to do a Google search for "green hotels Panama" "green tourism Panama," "eco-tourism Panama," etc. At least you may be able to find a hotel that is not as conventionally toxic as the usual options.

 

[Rrrr]

thanks, joey, for that info. i thought that was the case re: molly.

thanks, peggy, for that idea.

 

[jeffrez]

Mr Kite

Pls chill...I have been following this thread and been turned off by some of the negativity. I do not see any indications that anyone is trying to censor anything & I resent your implication to that effect in your post to spitfire.

I'm sorry to come out and address you personally like this, but I have bit my tongue numerous times already on this thread.

I just want to be able to read the INFORMATION that people have to share without getting riled up by silly, petty, energy-sapping sniping.

I don't need you running interference on every post. You raise my blood pressure.

ENOUGH ALREADY.

No one forces you to read anything. If you don't like what I say, don't read my posts. Problem solved.

 

[Rrrr]

Mr Kite, I think people are just asking you to be more... for lack of a better word... gentle. I totally appreciate all yr info and knowledge and contributions, but maybe the tone could be more... gentle...? Possible?

Rrrr

 

[jeffrez]

Mr Kite, I think people are just asking you to be more... for lack of a better word... gentle. I totally appreciate all yr info and knowledge and contributions, but maybe the tone could be more... gentle...? Possible?

Rrrr

Kind of seems like your comments should be directed more toward aquariusgirl, don't you think? That was a pretty harsh post, don't you agree? Pretty uncalled for, too.

Here's an idea: how about we leave personalities out of it, and stop attacking other members simply because you don't like their rhetorical style? I don't happen to like most of yours, either, to be honest. But you don't see me going around making an issue out of it. How about that for a change, what do you say? Try it, you might like it.

 

[Rrrr]

thanks for your thoughts and suggestions, mr. kite. so, leaving personalities out of it, i guess now it would be good to get back to the subject of this thread: the exciting prospect of actual help from stem cells.

do we know, how many people are expected to go in the 3 upcoming groups? joey, are you going for sure in sept?

 

[mojoey]

Hey Rrrr,

I'm not sure which group I'm going in yet, but I think September is the earliest I would go

 

[Rrrr]

joey, are you doing the cheney pre-stem cell protocol? and do you have MCS?