Does anyone know anything about this or has anyone heard of it?
Posted by sickmate (Member # 31502) on :
Yes, I have read about some people with lyme flying to india and do stem cell treatment for more than 50,000 $.
One claims to be cured, but I dont know about the others. I think some have written about their treatment in their own blogs.
Posted by poppy (Member # 5355) on :
Some of these people have made several return trips.
Posted by lyme-o (Member # 35115) on :
hmmm Interesting. Thanks
Posted by Indica440 (Member # 39461) on :
i had one treatment there and i hade huge improvements from round one. and i was very sceptic despite all the hopes!
brainsymptoms are a lot better. inflammation is better. all allergies are a lot better, i could eat almost anything again except gluten/milk but it was a joy to eat anything dith histamine again.
sadly i lost some of the progess because of hidden mold. but i recover faster now and strangly: I get COLDS again, didnt catch one. I think it shifts TH1/TH2? Of course you need (!) to treat the infections. need to test CD57 again. im able to tolerate ABX better, before it was impossible - thats why i went for it.
india is beautiful and amazing i enjoyed it even though i was very sick. most people need 2-4 trips to india. they do a SPECT scan of your brain where you can see the bloodflow of the brain and the damaged areas. maybe ill upload some pictures soon
i also met there some people who said i need to treat parasites, you can buy the antibiotics and other meds there very cheap!
Posted by Robin123 (Member # 9197) on :
Several people from our area have gone to India for stem cell injections and got their lives back!
I also enjoyed hearing the stories they told about paraplegic and quadraplegic people being able to get up out of their wheelchairs or beds and start moving again! Powerful stuff, those stem cells!
Posted by sickmate (Member # 31502) on :
Indica, how much did you pay?
Posted by nonna05 (Member # 33557) on :
Do they let you sit around in pain 24/7 or are they more human??
Posted by Pinelady (Member # 18524) on :
We have 11 US doctors now in South America using your own stem cells. But I would not consider it until you have treated to kill all the infections first. They have great funding plans. Even for those with nothing.
Posted by lax mom (Member # 38743) on :
Isn't it $25,000? in India?
Posted by sammy (Member # 13952) on :
My doctor recommended that I go to india for stem cell treatment too, price quoted was about $50,000min to start with. Said that I would likely need repeat sessions to get the most benefit. Also, due to my condition, I would need to continue antibiotics throughout the treatment session.
My other preexisting conditions have been making treatment difficult and drawn out. He thought that the stem cells could actually help heal my body and repair those genetic defects, not just treat the lyme damage.
Sadly, there is no way that I could afford part of one trip. Not even plane tickets. There is no one in my extended family or even a friend that could possibly help either.
When I told my doc, he kindly said "no worries". "We will be life long friends since you will always need treatment to survive."
Posted by lymenotlite (Member # 33166) on :
Looks like stem cell therapy is being used in the U.S. but maybe not for lyme at this time.
Dr H has suggested that hubby goes fairly soon. Will be tested by pulmonary and neuro. See how tests comes back. Then hopefully off to India we go. LLMD says $40,000 for trip. Reading up I see that covers therapy, housing and other things. you stay there for 2 months. Hopefully that works. 2nd trip may be needed. In hubbys case, we're talking about ALS. So we know the alternative.
Posted by Robin123 (Member # 9197) on :
[QUOTE]Originally posted by Pinelady: [QB] We have 11 US doctors now in South America using your own stem cells. But I would not consider it until you have treated to kill all the infections first. They have great funding plans. Even for those with nothing.
Do you have any idea how they know it's safe to use one's own stem cells, since our cells could harbor various pathogens?
Posted by sparkle7 (Member # 10397) on :
I read about a German mn who had HIV & he was cured of it. I believe they found a person who was genetically resistant to HIV. They used his stem cells to make more. I don't recall how they did it. The story is on the internet, though. You could search it.
I guess the thing would be to isolate the problem(s) & see if there are any people with immunity to them. In the case of Lyme, I have heard that people can relapse since the spiroketes can bury themselves in various places in the body.
I don't know... I'm sure people infected with Lyme may have other pathogens. This process may help to kick up the immune system to deal with other pathogens. Just a guess... I'm no scientist.
It's a shame that this treatment isn't more available. I guess they can't make as much money from it as giving people drugs for the rest of their lives...
Posted by Rumigirl (Member # 15091) on :
Plus, in the US, there is so much resistance---no laws!---against even stem cell research, let along treatment. It's totally wrong and sad IMO. But who's asking me? Not the people who are against it.
Posted by sickmate (Member # 31502) on :
Sparkle, this famous HIV patient was cured by a special bone marrow transplant not stem cell. I thunk he got the bone marrow of somebody with genes that can prevent HIV.
Posted by poppy (Member # 5355) on :
The problem I have with any of these alternative treatments, especially expensive and distant ones like stem cells in India, is that all you have to go on are anecdotes, and usually just the positive ones. No track record published or even available in any form. And no one ever hears from the ones who are not helped.
People who do this are desperate. Don't they deserve better information?
Posted by sickmate (Member # 31502) on :
my biggest concern is not that it wouldnt help, but that it would do more damage because this therapy is not standardized and controlled at all.
Posted by sparkle7 (Member # 10397) on :
After chemo, the leukemia came back. Brown�s last chance was a stem-cell transplant from a bone-marrow donor. H�tter had an idea. He knew little about HIV, but he remembered that people with a certain natural genetic mutation are very resistant to the virus.
The mutation, called delta 32, disables CCR5, a receptor on the surface of immune-system cells that, in the vast majority of cases, is HIV�s path inside. People with copies from both parents are almost completely protected from getting HIV, and they are relatively common in northern Europe�among Germans, the rate is about one in a hundred.
H�tter resolved to see if he could use a stem-cell donor with the delta-32 mutation to cure not just Brown�s leukemia but also his HIV.
----
HIV is a retrovirus, though. It's not a spirokete. It probably wouldn't hurt to try it but it's alot of money & we don't know for sure if it's a real cure.
I think the famous CFS doctor (Dr. Ch) was trying it on his patients but I don't think it worked for CFS. I think he had mixed results. He was bringing groups of people to Panama, if I recall correctly.
To me, it seems like the important thing is it find a donor who has immunity... not just any stem cells.
Posted by sparkle7 (Member # 10397) on :
When its ALS, you all must know the alternative. So anything is worth a try
Posted by poppy (Member # 5355) on :
Well if your hubby ends up doing this, please let us know how it goes. So we will at least have one more anecdote about the effectiveness and cost of this procedure.
[ 11-25-2012, 11:08 AM: Message edited by: poppy ]
Posted by Al (Member # 9420) on :
These doctors should be arrested for Extortion !
A few hours work and a small fee for needles does not add up to $50,000. They know people are desperate and also know it's not approved anywhere, so pay my price or die is what's all about.
The world just gets worse and worse.
Posted by sparkle7 (Member # 10397) on :
Yeah, healthcare should not just be for the wealthy but that's what it is...
To most people who are well - the whole issue is an abstraction, until you get ill. Once you get ill, it's kind of hard to try to fight for human rights while fighting an illness.
From my studies, it all comes down to a relatively small group making the decisions about who gets appropriate healthcare. Once you run out of money, there's not a whole lot else you can do.
Posted by lyme-o (Member # 35115) on :
I will keep you all posted. He has to go for a neurological test in two weeks. Has one more LLMD appt in January. I just want to go do this India thing. I don't want to wait until hes any sicker. But I will tell you all whats happening
Posted by Robin123 (Member # 9197) on :
Re stem cell research, I understand it is proceeding at a very fast pace at universities here in CA - don't know about other places.
A Nobel prize winner in medicine this past fall who's now in Japan was here in SF when he and his team figured out how to get stem cells from our regular cells. Everyone is now doing stem cell research based on that research.
And when they figure things out, it could be 10-15 years down the road before it gets approved for clinical use.
Posted by terv (Member # 29410) on :
I know nothing about this but a stupid question:
Where or who does one get the stem cells from?
Posted by tickalert (Member # 7033) on :
I did stem cell for a knee a few months back using a Dr. in Colorado who was excellent. For my knee to be injected, the cost was around $1,250.00.
I'm scheduled to have one more injection in January which was successful and I no longer have pain in my knee.
At this point, I don't have active infection. I'm not sure if any of the Doctors in the US have knowledge of how to treat lyme with stem cell.
Posted by tickalert (Member # 7033) on :
One more thing, the stem cell isn't covered by insurance.
Posted by lymenotlite (Member # 33166) on :
tickalert - could you say what was wrong with your knee? I have a friend with a very bad knee that has had multiple operations on it. Her knee is bone on bone and there are ligament issues as well.
Posted by Indica440 (Member # 39461) on :
i know and understand your concerns. for me it was the best treatment despite antibiotics. i got much of my life back... but you need 2-3 treatments beacuse thats what the lymies need.
its really amazing. i had no side effects from it except i had the best months in my life after i came back. sadly i kinda relapsed because of hidden toxic mold. this disease is so complicated...
i know people had mixed results.
Posted by lyme-o (Member # 35115) on :
So India440, you feel it was worth it? And do you only have Lyme? We are dealing with a probable ALS dx. Does stem cell work for this?
Posted by Al (Member # 9420) on :
I just wanted to comment about the HIV patient that was cured. That was not the same treatment that people are talking about here. What he had is a bone marrow transplant which is a major procedure and requires life long anti-rejection drugs.
The stem cells that people are doing in India is not at all the same thing. It sounds as though they are being injected with stem cells which is not the same as a transplant.
Anyhow...just wanted to point out that those are two different procedures.
I hope that those going to India to try this will keep us all posted on how it goes. I know a lot of us here would be interested to hear what type of results you get.
Pam :-)
Posted by sparkle7 (Member # 10397) on :
Thanks for the clarification. I guess I see "stem cells" & think it's all the same...
If they are just being injected with stem cells - why is it $50,000?
I'm sure each disease has it's own treatment, so they are all going to be different. I guess this is why it's so important to test everything & figure out a protocol tha will address each ailment in an appropriate manner before getting this done.
It would probablt save alot of money to make sure all pathogens or environmental factors are covered first.
I wnder if any of this will be included when the Health Care Plan goes into effect?
Posted by Pinelady (Member # 18524) on :
Robin they told me they harvest your immature stem cells before they have a chance to get infected.
Raise them up to be soldiers and then send them in to mop up the infections and turn the immune system back on to fight. You can call and speak to them...
Posted by lymeboy (Member # 24769) on :
either way, how many here can come up with 50G? I can barely pay my LLMD bills.
Posted by Pinelady (Member # 18524) on :
Starts at @ 15k. They told me they had excellent payment plans for those who cannot afford it.
Posted by CD57 (Member # 11749) on :
Pinelady, where are you talking about this for 15k? Is this the India thing?
Sounds like the cost for India has doubled since we first heard about it. That's a LOT of money in India.
Posted by lyme-o (Member # 35115) on :
So does anyone know anybody that has been there? I'd like to speak to them
Posted by Robin123 (Member # 9197) on :
Yes, I know people who have been to India - if you want to get in touch with them, you can pm me -
Re India, I understand it's 20 or 25K/month for two months, and that includes living in the hospital and all care there and two stem cell injections daily, I think.
Posted by Pinelady (Member # 18524) on :
Consider that mild hyperbaric treatment is proven to mobilize your own stem cells, which is one of the many ways it helps the body to recover.
It can be done at home for a fraction of the cost of stem cell therapy, although, in my opinion/experience, it needs to be a commitment of regular, consistent treatment over time with mild pressure.
Although I considered stem cell therapy as a last resort, mild hyperbaric is how I ultimately recovered from severe neurolyme and coinfections...
I got SCT at Stemgenexin CA, $16,000...own fat cells Results were disappointing, after 5 mos I feel like I lost the small improvements that I first saw. 2 Lyme friend went to Germany, got SCT (their own blood grown for 10 day)!$20,000 5 mos later, 1 nocticed 50% improvement, the other one has no improvement. I don't think it was worth the cost
One mother had a face SCT for aging ...she didn't much a of difference w her looks...16,000
Posted by Littlesprout (Member # 7406) on :
Forgot about my MS friend who went to Mexico across from Miami been in wheelchair for the last 5 yrs. She got fetal SCT for 25000.00
She hasn't noticed much, still in wheelchair Most SCT suggest doing HBOT to help stem cell function. I got a mHBO chamber and my friend did 10 HBOT in a hard chamber
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