Stem Cells

mojoey

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From Cheneyresearch.com: (this excerpt is freely available to the public) http://www.cheneyresearch.com/2010/01/results-of-stem-cell-therapy-at-7-months-in-a-family-of-three

Results of stem cell therapy at 7 months in a family of three.

January 24th, 2010, published in Stem Cell Therapy

Three family members, mother, son and daughter, all with CFS, were evaluated recently in my clinic. They all became sick in Prague, the Czech Republic, on the mothers sabbatical LOA from her college teaching position after all had a chicken-pox like illness. They are all seven months out from stem cell therapy in Panama. They all have improved significantly following stem cell therapy with the daughter claiming a complete cure after 17 years of illness at the age of 29. She is the second stem cell patient claiming a complete cure and includes an unrelated 23 year old male patient, also 7 months out from stem cells. Both cures took at least 90 days to become manifest with the first thirty days exhibiting significant hypersomnolence and with little energy to do much and typical for all the CFS stem cell patients (N=13).
 
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Three family members, mother, son and daughter, all with CFS, were evaluated recently in my clinic. They all became sick in Prague, the Czech Republic, on the mothers sabbatical LOA from her college teaching position after all had a chicken-pox like illness. They are all seven months out from stem cell therapy in Panama. They all have improved significantly following stem cell therapy with the daughter claiming a complete cure after 17 years of illness at the age of 29. She is the second stem cell patient claiming a complete cure and includes an unrelated 23 year old male patient, also 7 months out from stem cells. Both cures took at least 90 days to become manifest with the first thirty days exhibiting significant hypersomnolence and with little energy to do much and typical for all the CFS stem cell patients (N=13).
Thanks joey. The delay of three months between treatment and "cure" is interesting because it is very similar to the rituximab treatment pattern; hopefully they won't relapse though. I wonder if success could be increased especially in older patients if they did a rituximab treatment first. I recall reading a speculatory scientific article in which they proposed treating immunologically-mediated diseases like CFS by destroying the immune system with drugs or radiatiation, then infusing stem cells. In any case I am keeping a watchful eye on this because at just under 28 years old, I'm in the age range of those who have been "cured". I would also be interested in seeing XMRV test results before and after teatment. I guess it is possible but doubtful that stem cell infusions could eliminate XMRV, so presumably the cured patients could relapse if they experience a major infection or trauma.
 
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Info for Oerganix

Molly29, thanks so much for sharing this with us. Can you point me to a website or tell me the name of the Costa Rican clinic? I live "next door" to Costa Rica and would like to try to parse out how much housing and transportation contribute to the total cost you stated. Or, if you know how it breaks down, what did the actual medical treatment cost?

I can go and return to/from Costa Rica for less than $50 RT and I know how to stay there for around $17-20 for a single, a little more for a double. And I know how to eat very cheaply.

You did say one doesn't need a doctor's referral, didn't you? Although my Nicaraguan doc would do it, I'm sure.

Again, thank you!
Hey Oerganix,
The Website is http://www.cellmedicine.com/ It's great that you can travel/stay in CR inexpensively. A big plus. You need to fill out the "Patient Application" form on their website and they will let you know the cost. No to the mini lipo procedure.
(They have a standard rate for CFS) No breakdown that I know of...and you can have your Doctor as you mentioned refer you or not. The stem cells are given to you in a certain number so lets say 45million for CFS treatment, You can string it over a week or 2 weeks, your choice. Good luck to you. It was worth it for me, although I am 2 plus months out. Have continued to see progress!
Molly
 
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Costa Rica known as the Switzerland of Central America

Just as a side note CR was amazing with their medical procedures and the cleanliness of the Clinic.

"Costa Rica has the advantage of proximity to the United States, good air connections between the two countries, political and social stability, and low crime rates.

Most sought-after here are eye surgery and dental treatment, followed by plastic surgery, orthopedic procedures, neurosurgery and gynecological care, according to government statistics. Foreign patients generally pay 30 to 60 percent less than what they would pay back home.

But in some cases, such as coronary bypass surgery, costs in the United States are four times higher than in Costa Rica.

A 2008 study by the Deloitte & Touche international accounting and consulting firm estimated that the world market for medical tourism is around sixty billion dollars and could grow to 100 billion dollars by 2010."

Molly
 

mojoey

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Hi Molly,

Was wondering if you would be willing to do a before/after comparison of symptoms?

best,
joey
 
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Hi Molly,

Was wondering if you would be willing to do a before/after comparison of symptoms?

best,
joey
Sure....Do you have a specific list or how you would want me to compare before and after...More than happy too.
*Just had a great checkup/in this morning* so I just went over my getting better symptoms this am!
Ask away!
Molly
 

mojoey

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Before: ME/CFS specific symptoms that bothered you [I'm particularly curious about postexertional malaise and orthostatic intolerance, if you suffer(ed) from these]

After: where those symptoms stand now

Thanks!!
joey
 
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Molly, thank you so much for all of the information. Perhaps you could rate your condition every month (or even weekly) so we can see how you are doing on a month to month basis. You could use Dr. Bell's disability scale or Dr. Lerner's Energy Index or whichever scale you like most. Dr. Cheney said people continue to improve over the course of 6-12 months and then plateau.
 

mojoey

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Agree with CFS since 1998: a before/after placement on Bell or Lerners' scales would be very helpful!
 
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Before and After Stem Cells

Hey Joey and CFS since 1998,

This is lengthy but I feel is it more accurate picture of where I stand after Stem Cells.
I don't really go by Bell's scale and EIPS seems a little better but as a whole, I have never been able to put myself in those catagories except for year 1-4 when I was bedridden and required daily help. Also I seem to use that time (a 0-10) as MY marker against today so it is skewed, or biased in my opinion. And yes Joey, I had horrible OI, dizziness, and post exertional malaise.

Before I left for Costa Rica I was around a 30.

I have to change it around so you can see where I was...

*MILD* symptoms at rest, NOT Moderate to severe symptoms at rest.
At rest I didn't really have severe symptoms.
Fatigue/Blah/Flu/Post exertional Malaise feeling was the worst. Brain Fog too.

*Moderate* NOT Severe symptoms with any exercise or activity.
I did not and do not "exercise" I walk the dog SHORT distances, walk up and down stairs for laundry etc. and always pull myself back when I felt fatigue or brain issues starting.

Yes, Overall activity level reduced to 50% of expected. *BUT I expect alot of myself though as I was Type A before I got ill.*

*Not always confined to house.* I would push myself to get one day in every 2-3 weeks or so to do groceries errands etc.

I was Unable to perform any strenuous tasks.

***I was able to perform desk work for about 4-5 hours.***
Able to perform desk work 2-3 hours a day, but requires rest periods.
Yes I would climb into bed and be tired.

Worst symptoms: Fatigue, Brain Fog, Postexertional Malaise/Weak

NOW 2 months out:

A 40 on Bell's Chart

Again mild to no symptoms at rest.

NOT Moderate to severe symptoms at rest.

***MILD*** not Moderate to severe symptoms with exercise or activity

Overall activity level reduced to 50%-70% of expected.

Not confined to house.

CAN DO SOME STRENUOUS DUTIES
Unable to perform strenuous duties;

I AM able to perform light duty or desk work ***5-6*** NOT 3-4 hours a day, but requires rest periods. (REST PERIOD NOW IS WHEN I AM DONE FOR THE DAY)

When I came home from Costa Rica my body/mind was different.
I no longer have BAD brain fog, I do very well on memory tests, and exercises. I can sit on business conference calls and not feel drained. Most mornings I wake up with a VERY clear head, even if I have not slept well. I can immediately start my day with kitchen chores and my dog. Whereas before I needed a good 1/2 hour to "get going". Dust out the head, or maybe not start the day. Also BSC (Before Stem Cells) I was *moody* if I was bothered in the morning. Do not have that anymore.

BSC I couldn't walk my dog very far. Now, I walk my dog up incline hills and can go for longer distances. 10-20 minutes.
My eyesight is clear and like Hi Def is the only way to describe it. Food doesn't disturb me and after eating I do not want to pass out, like before. Gut is better.

I am able to do *different* activities. I got up really early and went and took care of my friend's wife who broke her hip from
7am-3pm. Had plenty of energy. Helped non stop. Never would have done that before. Mild to No more overstimulation.
I jumped in the car and went to run several errands without even thinking about it. Usually I have to think for at least 10-20 minutes and call a life line (just kidding) if I think going out is a good idea or will I get sick? I was indecisive about going out due to my old thoughts of "will you feel crappy if you go out today?" "Maybe another day when you feel more stable" "That can wait for another day" etc. Can do 20 trips up and down the stairs for 5 loads of laundry.

I won't say that I don't have days where I feel cruddy or downright tired.
But I seem to bounce back alot better than before. My body/mind seems to be settling in with the changes slowly.
I am excited about the differences I feel and am journaling daily. A long time friend came over and said that he noticed a distinct change in my stamina and ability to converse and overall demeanor. My stem cell mentor was talking to me on the phone and said the same that I sound clear and relaxed and happy.
My Dr. is impressed with my feedback and is inclined to see where I am am six months out, He will decide if another infusion is good for me. The Dr's in Costa Rica believe the less time you waste and get the good cells to continue cleaning up the mess inside, one has a better chance for a full recovery. Will continue climbing up the scale and see where I am in Month 3!

Will continue to keep you posted. Any other questions feel free to ask.

Molly
 
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Molly, It's great to hear that you are doing so well! :Retro smile:
Two questions...
--Are you positive for XMRV?
--If you are positive, is your doctor concerned about you getting reinfected from the XMRV retrovirus that is still there?
Thanks for all the info!!
 
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Bluebonnet


Molly, It's great to hear that you are doing so well! :Retro smile:
Two questions...
--Are you positive for XMRV?
--If you are positive, is your doctor concerned about you getting reinfected from the XMRV retrovirus that is still there?
Thanks for all the info!!
Hi Bluebonnet
Thank you so much...I hope to keep posting even better news!
The Dr's. in Costa Rica were going to test me, they are aware of the whole
XMRV virus situation and the testing, but said that the tests weren't 100%
accurate yet. True, at the time I went down there.

So no I do not know if I am XMRV positive. I do know that I have/had EBV,
CMV, HHV6 and my RNAseL was very high as well as 2-5A synthetase.
I will get tested in the near future.

I was very investigative with ALL of the doctors there regarding the
corruption of the new cells and continued replication of any viruses including
XMRV. All of the doctors said "yes they can reproduce BUT the bigger
picture is what is going to happen when the stem cells hit your bloodstream
and start working as a new system and component of your blood and
eventually your bone marrow, gut and body"...
A direct quote from my Dr. in an email was:
"The stem cells can't kill virus by themselves, but they help your immune
system to do it, which is better, because even with the stem cells in there, the
mechanism they produce to kill the viruses is running..."

Molly
 
D

DysautonomiaXMRV

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Kurt will know the answer to this, but I am slightly concerned if stem cells are safe for people who are XMRV+, if they could harbour XMRV?

If Judy Mikovits says XMRV could infect egg/sperm cells (theoretically), then aren't stem cells linked to 'germ cells' and germ cells are stored in mens rude bits until they mature and become swimmy little spermies?

So would XMRV infect them at this stage (as germ cells), or just infect matured cells (sperm cells)?

Is Science sure that Stem Cells are actually safe yet?

Thanks for any ideas.
 

Hope123

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Wow, thanks to Molly an and Sushi for sharing! This is great news!!

This is one area where I would love to see Cheney actually publish. It's great to hear the anecdotes but the larger picture would be interesting: how many people benefited, how many didn't, were there any adverse reactions? One, two, and five year follow ups, etc. would be useful.
I agree with Robin. Cheney rarely publishes or does scientific talks other than fairly expensive talks for patients or non-mainstream providers. I'm glad that some people have benefitted from his treatments but this type of behavior doesn't help advance CFS research generally or give us more credibility.

i dont see how stem cell infusions could eliminate XMRV..maybe a stem cell transplant...
Ladybugmandy makes an excellent point. I know a little about stem cell TRANSPLANTS and in those cases, the person's own immunes system is destroyed to some degree so the new stem cells can come in, settle down, and re-start a new immune system. The danger of course is that while the new stem cells are settling in, people sometimes can get very serious infections and die from them. If stems cells do help, it would seem it would likely only be temporary.


Also, where is their supply of stem cells coming from? It's not clear from reading - is it human, animal, etc.? One concern I would have is how the facilities are getting their stem cells. I don't know how himan products are screened for safety in other countries; some countries might not have established standardized procedures. And depending on how the stem cells are processed, some people's immune systems may not react well to them as they are considered foreign matter. I can see why Dr. Klimas would be wary.

Just a legal note: if you are injured outside the US, your chance of legal recourse may be nil.
 
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from what i heard dr cheneyes patients don't get immune system destroyed at all, they dont do that there like you would do in transplants or others....they just infuse new stemm cell from their own body or you can get new cells from blood after baby is born instead of throwing away the cord they save it and grow stemms from there. i did little research last year about it when my friend in thailand told me they doing there too for same price with very strick guidelines.
 

minimus

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I am a Cheney patient. I had my annual visit a few weeks ago and he talked a fair amount about stem cell results among patients who have received this treatment. Basically, those under 40 have the best response, with two complete and total "cures". (One treated patient is now back to competitive swimming.) In those over 40, improvement occurs but some of the hallmarks of the illness that he sees on echocardiograms have not been abolished, just diminished. His thinking is that a second round of stem cells might result in more improvement, although this is only a theory at this point, as nobody has yet gone back for a second stem cell transfusion. The one universal result is that all immune system parameters have returned to normal for all treated patients, including NK cell function. That last finding I find to be very promising, especially given the high incidence of cancers among long-term CFS patients. The downside is that the treatment costs about $25,000 for one stem cell infusion, and north of $40,000 for two (as the second one is discounted.)
 

Sushi

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I am a Cheney patient. I had my annual visit a few weeks ago and he talked a fair amount about stem cell results among patients who have received this treatment. Basically, those under 40 have the best response, with two complete and total "cures". (One treated patient is now back to competitive swimming.) In those over 40, improvement occurs but some of the hallmarks of the illness that he sees on echocardiograms have not been abolished, just diminished. His thinking is that a second round of stem cells might result in more improvement, although this is only a theory at this point, as nobody has yet gone back for a second stem cell transfusion. The one universal result is that all immune system parameters have returned to normal for all treated patients, including NK cell function. That last finding I find to be very promising, especially given the high incidence of cancers among long-term CFS patients. The downside is that the treatment costs about $25,000 for one stem cell infusion, and north of $40,000 for two (as the second one is discounted.)
Hi Minimus,

I have a friend who is also a Cheney patient, well over 40 and has gone for two rounds of stem cell infusions and will soon go for a third. She has improved enormously, but due to the age aspect and the seriousness and length of her illness, has found that she has to do "booster" sessions. She has her life back to a large extent due to these treatments.

I wonder when the price will come down?:worried:

Sushi
 

SeaShel

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I wish there was a way to hold Reeves accountable for so many of us passing our 40th year with no new treatments available. I would venture a guess that the older we are/length of illness will be a factor in treatments other than stem cell.

I'd sure love to be wrong though!

Shelley
 

cfs since 1998

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Basically, those under 40 have the best response, with two complete and total "cures". (One treated patient is now back to competitive swimming.) In those over 40, improvement occurs but some of the hallmarks of the illness that he sees on echocardiograms have not been abolished, just diminished.
Thank you very much minimus. I am curious how Cheney can classify the age groups like this when there were only 13 patients; it seems like too small a group to see any statistically significant differences between age groups. In any case, 2 complete remissions out of 13 patients is still a pretty good track record. Do you know how many of the 13 were under the age of 30? If the only people under 30 were the two that were "cured", then it would be 100% success rate for those under 30, which is obviously quite remarkable.

If it weren't for the XMRV news I might have already booked a flight to Panama or wherever it is. I'll wait a little longer though to see if they can use this newly discovered information to find effective treatments. I am starting beta glucan soon, and in addition to its other immune effects (NK cell and macrophage activation), I read that it can increase the production of your own hematopoietic stem cells in your bone marrow.