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Six Siblings With Lyme Disease Travel To India For Stem Cell Treatment

Antares in NYC

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http://chicago.cbslocal.com/2015/10...ease-travel-to-india-for-stem-cell-treatment/

Six Siblings With Lyme Disease Travel To India For Stem Cell Treatment
(CBS)One West Chicago family made an 8,000 mile journey to India so six siblings, diagnosed with Lyme disease could get stem cell treatments they couldn’t get here in the U.S.

CBS 2’s Audrina Bigos shares the Sweeney family’s journey.

On Youtube, the six brothers and sisters, ages 9 to 19, documented their eight-week journey in a hospital in New Dehli, India.

Their parents, Jim and Wendy, call it their last ditch effort, their only hope after nine years of searching for answers, after seeing endless amounts of doctors who couldn’t treat Lyme disease.

“Three of them had sudden onset hearing loss,” Wendy Sweeney said. “They had malabsorption syndrome, vitamin and mineral deficiencies, they had parasites.”

“I know people always say, ‘how can six kids have Lyme disease?’” Jim Sweeney said. “I don’t know.”

Four of the six kids had to be taken out of school because of crippled immune systems. Two of them couldn’t leave the house. But then, an opportunity to get their lives back from a doctor in India.

“Were we skeptical? Yeah!” Jim said. “I was definitely skeptical to the point I said let’s just take the three sickest because we’re risking everything. If this doesn’t work, we’re going to come home and lose our house.”

They Sweeneys got home two weeks ago more in debt, but healthier and happier.

In India, they gave me my life back,” Dylan said. “It was like I had been born again.”

Stem cell treatments for many different ailments are being studied in the United States, but many experts here regard them as controversial and still unproven.

We found no registered studies currently underway in the U.S. for stem cells and Lyme disease.
 
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sillysocks84

Senior Member
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445
Mesenchymal stem cells from umbilical are safe and home to where repair is needed, after first going to the lungs for some reason. But it is one of the safest type of stem cell and no risk of graft v host disease yet. We should all be given the option to try it. I don't have lyme btw.
 

Sushi

Moderation Resource Albuquerque
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Mesenchymal stem cells from umbilical are safe and home to where repair is needed, after first going to the lungs for some reason. But it is one of the safest type of stem cell and no risk of graft v host disease yet. We should all be given the option to try it.
But here is the issue: a few years ago many of Dr. Cheney's patients had this form of stem cell transplant in Panama. They initially had good results but they didn't last. Some went for 3 or more treatments but had no long-lasting (more than 6 months approx) benefit. Sad. I hope this family does better. Dr. Cheney's patients no doubt included some Lyme patients, though their main diagnosis was ME/CFS.
 

sillysocks84

Senior Member
Messages
445
But here is the issue: a few years ago many of Dr. Cheney's patients had this form of stem cell transplant in Panama. They initially had good results but they didn't last. Some went for 3 or more treatments but had no long-lasting (more than 6 months approx) benefit. Sad. I hope this family does better. Dr. Cheney's patients no doubt included some Lyme patients, though their main diagnosis was ME/CFS.

That is sad. I didn't know they used that type. So eventually whatever drives the disease totally stopped responding to the cells. If it worked in the beginning and tapered off, what would cause that reaction? If they had a suspicion that could probably help tremendously
 

barbc56

Senior Member
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3,657
I only found one or two articles about this story each with few details.The same details.

Something doesn't add up but maybe that's because of the lack of information and has nothing to do with the veracity of the story.

If someone can find some more detailed sources that I might have missed, other than a YouTube video by the family, it would be appreciated.

Thanks.
Barb
 
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Martial

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1,409
Location
Ventura, CA
Unfortunately I do not see stem cells really being adequate enough for a stand alone treatment in the treatment of chronic bacterial infection like Lyme. The lyme bacteria is highly sophisticated and sometimes a bit more involvement is necessary in returning things back to healthy in the body, this is of course just my own opinion. I feel however that the implications of stem cell therapy are very helpful, and restorative to different functions of the body affected by disease. However it is probably necessary to treat with other means to bring bacterial levels down more, and keep the process of replication of the bacteria from happening. Once this is established then stem cells may further assist in boosting the immune system enough to restore proper functioning of the body, and is probably a great asset as part of a recovery protocol. Perhaps just not in the way it can be used as a sole answer. I hope these kids stay well though, and that they have done enough already that these stem cells do work in the long term, or that I am wrong and the stem cells alone are enough.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I only found one or two articles about this story each with few details.The same details.

Something doesn't add up but maybe that's because of the lack of information and has nothing to do with the veracity of the story.

If someone can find some more detailed sources that I might have missed, other than a YouTube video by the family, it would be appreciated.

Thanks.
Barb

It is complete nonsense as far as I can see. Stem cells are not actually a treatment for anything at present, except perhaps rare genetic deficiency disorders. Otherwise they are a means of replacing ablated diseased marrow. If these are someone else's stem cells, unless the patient has had heavy chemotherapy they will die within minutes almost certainly.

I think we can assume this is pseudoscience and these people have been ripped off - although I guess the placebo effect might have been good.
 

barbc56

Senior Member
Messages
3,657
It is complete nonsense as far as I can see. Stem cells are not actually a treatment for anything at present

It is however, a treatment for Heavy Wallet Syndrome! This in turn decreases the number of people with back problems.

There are even studies that prove this. Yes, there are. Don't you dare doubt me. Check out PubMed as I just don't have the energy to post them.:D

Barb
 

GhostGum

Senior Member
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316
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Vic, AU
It is complete nonsense as far as I can see. Stem cells are not actually a treatment for anything at present, except perhaps rare genetic deficiency disorders. Otherwise they are a means of replacing ablated diseased marrow. If these are someone else's stem cells, unless the patient has had heavy chemotherapy they will die within minutes almost certainly.

I think we can assume this is pseudoscience and these people have been ripped off - although I guess the placebo effect might have been good.

Maybe a bit anecdotal but it is becoming common practise for fighters (MMA) and athletes to use stem cell injections for injuries and from some accounts with excellent results. Joe Rogan on his podcast mentions using it for a long term shoulder injury and getting rotation and movement back in it he had not had in many years. There has been a story going around about Conor McGregor using them to manage a torn ACL and fight with it,

http://fansided.com/2015/11/19/conor-mcgregor-stem-cell-injections-chad-mendes/

It might be effective for specific injuries in these situations, it is probably why many people report some short term benefits in some cases, the problem obviously comes with the notion it could cure very complicated illness and disease.
 

Jonathan Edwards

"Gibberish"
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5,256
Maybe a bit anecdotal but it is becoming common practise for fighters (MMA) and athletes to use stem cell injections for injuries and from some accounts with excellent results. Joe Rogan on his podcast mentions using it for a long term shoulder injury and getting rotation and movement back in it he had not had in many years. There has been a story going around about Conor McGregor using them to manage a torn ACL and fight with it,

http://fansided.com/2015/11/19/conor-mcgregor-stem-cell-injections-chad-mendes/

It might be effective for specific injuries in these situations, it is probably why many people report some short term benefits in some cases, the problem obviously comes with the notion it could cure very complicated illness and disease.

I am afraid stem cell injections for injuries are nonsense too. You can call anything a stem cell if you want to. Blood has 'stem cells' in it. Ligaments have 'stem cells' in them. When you injure a ligament the tissue fills with blood (bruise) so you will be injecting your own stem cells - but no reason to think it does any good. This is all pretend science - using words that sound good but are completely irrelevant. The surgeons in my department thought they were developing stem cell treatment for arthritis for years and then finally realised they had no idea what they were doing. Surgeons tend to have a rather low level of critical analysis.
 

Helen

Senior Member
Messages
2,243
It is complete nonsense as far as I can see. Stem cells are not actually a treatment for anything at present, except perhaps rare genetic deficiency disorders.
Couldn´t it be a rare genetic disorder that causes six siblings to have a "crippled immune systeme", so bad that they were taken out of school? I don´t defend the actual treatment, but just want to keep an open mind.
 

duncan

Senior Member
Messages
2,240
@Jonathan Edwards : "Surgeons tend to have a rather low level of critical analysis."

As do many clinicians and researchers that I've encountered.

Patients are just trying to care for themselves and their families. It is a difficult process when mainstream medicine proves inadequate or indifferent.
 

barbc56

Senior Member
Messages
3,657
Couldn´t it be a rare genetic disorder that causes six siblings to have a "crippled immune systeme", so bad that they were taken out of school? I don´t defend the actual treatment, but just want to keep an open mind.

I was wondering about that. It sounds like something was going on. That's why I wanted more details.
 

barbc56

Senior Member
Messages
3,657
@Jonathan Edwards : "Surgeons tend to have a rather low level of critical analysis."

As do many clinicians and researchers that I've encountered.

Patients are just trying to care for themselves and their families. It is a difficult process when mainstream medicine proves inadequate or indifferent.

The difference being that these people are being scammed and the clinics are making a lot of money off of desperate patients.
 

GhostGum

Senior Member
Messages
316
Location
Vic, AU
I am afraid stem cell injections for injuries are nonsense too. You can call anything a stem cell if you want to. Blood has 'stem cells' in it. Ligaments have 'stem cells' in them. When you injure a ligament the tissue fills with blood (bruise) so you will be injecting your own stem cells - but no reason to think it does any good. This is all pretend science - using words that sound good but are completely irrelevant. The surgeons in my department thought they were developing stem cell treatment for arthritis for years and then finally realised they had no idea what they were doing. Surgeons tend to have a rather low level of critical analysis.

It does say in the article it still needs to be defined which type of stem cell is most beneficial for regenerating injured ligament tissue. Hard to believe all the research, past and present is just a total waste of time, there must be some merit to it under some circumstances. But I do not underestimate the placebo effect neither, the article also pretty much says it is still all up in the air as well.
 

duncan

Senior Member
Messages
2,240
No doubt it's tough to be a patient, @barbc56 .

Between dogmatic incompetents and greedy charlatans, it's hard to navigate the right course.

The one truth, though, is that when family is involved, you are loathe to remain stationary. You have to try something for the people you love.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Couldn´t it be a rare genetic disorder that causes six siblings to have a "crippled immune systeme", so bad that they were taken out of school? I don´t defend the actual treatment, but just want to keep an open mind.

No. In the situations where stem cells are used for such rare disorders you need high tech methods to get the stem cells to take over production of whatever is missing. Just bunging them in is a waste of time. They will die immediately unless the person has an immunodeficiency like SCID mice (severe combined immunodeficiency) in which case someone would have made the diagnosis soon after birth. The much simpler explanation is that this is a complete con trick - it happens all the time so why not here?