I came upon a website of a lymie that went to India to get ESC injections by Dr. Verna. She had been sick for 5 yrs, went on ABx but never reached full wellness. It was only with the strengthened immune system & regeneration of system damaged by lyme that she is now seemingly completely well. She is calling it a miracle recovery.
I find it interesting that no one is really talking about this on the website. Why is there so much hype (founded or unfounded) about the bionic 880 but not similar interest in the stem cells? I understand they serve different purposes (bionic for eradicating lyme, ECS for regeneration), but this is very very big. I recalled that Dr. H bulleted ECS in india in his master list of alternative therapies. The woman who got the injections done is coincidentally a patient of Dr. H. I know that several other patients have also gone too.
Has anyone heard from other patients about this therapy? It's as controversial as it gets with the recent breakthrough research tying stem cells to cancer, but it can't be more so than light that's claimed to kill lyme in a matter of days
-joey
Posts: 713 | From Los Angeles | Registered: Oct 2007
| IP: Logged |
Besides the ethical issues involved in this treatment, I think one of the primary reasons there is little discussion of this option is because it is not readily available and primarily it is financially within reach of only a very very few people.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
I would be very curious as to what else is on this master list of alternative treatments that you mention.
Please p.m. me.
Thanks.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Its a very interesting treatment for the questions it raises. I just asked some on her blog.
1) What does chronic lyme do to the immune system. It must disable it creating chronic inflammation, which has devastating effects and symptoms, as well as chronic immune incompetence, leading to inabililty to eradicate the organism(s) even with antibiotic treatmetns.
2) Why do stem cells fix the immune system along with the tissues/ I understand the answer to the latter but not the former, yet. And why did they repair her brain lesions? Weren't those lesions supposed to be sites of active infection? I'd really like to understand more. I understand using stem cells to repair say neuro damage from a traumatic accident, but not to repair the immune system but I think it is possible. Still, where did the lyme go????
3) What about cancer? She had lactation, weight gain, hunger, like a pregnant woman. She's in her 20's. But wouldn't stem cells esp embryonic pose the same or more kind of cancer risk as hormone treatments etc. That means not so much to a young woman but definitely to a midlife man or woman. Maybe? Not sure but I think so.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
This is interesting to me but I don't have time to research it at the moment...
I skimmed over the other thread about the lady who went to India...
I did hear an interview with a man who wrote a book about using stem cells for heart conditions. It seems that the stem cells can be extracted safely via the nose from your own brain. They are not embryonic.
I'm no expert but it seems your own cells would be a better choice - if it's possible to get similar results. I don't like the idea of using someone else's embryo. I'm not a Christian or Right to Lifer but it's kind of creepy.
I think the author's name was Christopher Wilde if you want to check it out.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
amy said that she had been on ABx for a certain amount of time, and theoretically by using stem cells to boost the immune system, the immune system was then able to keep the lyme in check.
Technically that's what we're trying to do right? Get rid of lyme while building back up the system? It sounds like the latter is the more difficult task for most of us, and the stem cells change that game completely
-joey
Posts: 713 | From Los Angeles | Registered: Oct 2007
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Amy is a patient of my doc's. He says that this is not a cure, that you will still have to treat, just maybe not consistently. It's very interesting, albeit a bit scary.
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I don't think cancer has been an issue with embryonic stem cells. To my knowledge, no one has had any problem with cancer in several years that this work has been done.
As for benefit, seems mixed but optimistic. I know 2 people that went. Both had notable improvements. Others are there now with early promising reports.
My theory is that we need both a way to eradicate or effectively control AND a way to regenerate. This falls in regenerate. If you still have Lyme and don't deal with that, the Lyme will do to the new immune system what it did to the old one most likely. So both have a place I think.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Not necessarily about Lyme but interesting...
However, if the stem cells come from a different person or animal to the one they are to be transplanted into, immune rejection may occur.
Obtaining stem cells is also a problem. You may have heard of embryonic stem cells, which can be made from embryos only a few days old.
Another potent source of stem cells is the developing foetus. Yet it is difficult to derive these cells from humans, both technically and ethically.
An easily obtainable source of stem cells taken from adult organs would therefore be an immense boon, as they could be taken from any unaffected organ in the patient, differentiated into the new cell type, then returned.
A recent paper published by a group of scientists at the University of Durham (UK) demonstrated an intriguing new source of stem cells- your hair!
The researchers took hair follicles from rats and mice, and grew them in culture under special conditions.
Almost unbelievably, the follicle cells began to change into myeloid blood cells- the type that form the white cells in the immune system.
Even more exciting was the discovery that these cultured cells could then be transplanted into animals which had all their myeloid cells removed by radiotherapy.
The transplanted cells were capable of replacing all the missing components of the immune system, an effect which lasted for over a year.
Thinking therapeutically, this could be of immense use in treating blood disorders such as leukaemia, in which the white blood cells multiply out of control.
Often it is treated by using radiotherapy to kill all the patient's rogue cells, then performing a bone marrow transplant using tissue from a relative or similar donor.
But there can be serious compatibility problems between the donor and patient due to the different genetic makeup of the two people. Using the patient's own hair cells would remove these problems, providing a pool of genetically identical stem cells.
Perhaps in the future hair cells could be persuaded to adopt other fates, such as becoming nerves- these could be transplanted to reverse the effects of neurodegenerative diseases like Parkinson's.
-----
About Christian Wilde's book & a newsletter about stem cell research:
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
quote:Originally posted by CD57: Amy is a patient of my doc's. He says that this is not a cure, that you will still have to treat, just maybe not consistently. It's very interesting, albeit a bit scary.
Does the Stem cell treatment work for just Lyme or co-infections also?
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Hi! I think its for everything. From what I hear (I have two friends over there now) the docs there don't know much about Lyme and co, just about their own therapy. But everyone that has gone over has had Lyme + co-infections.
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
Man Loses Battle with Lyme Disease Tallahassee Democrat - Tallahassee,FL,USA Sun, Oct. 09, 2005 By Jennifer Jefferson DEMOCRAT STAFF WRITER
On the Internet, he was known as Dr. Mike even though he wasn't a physician.
Mike Thomas, 48, was a supervisor of water utilities for the city of Tallahassee.
After being diagnosed with amytrophic lateral sclerosis, also known as Lou Gehrig's disease, he became an avid researcher of the disease.
His research led him to China to undergo experimental treatment in December, but he died Wednesday at home of Lyme disease.
In Beijing, Thomas met other patients from around the world who turned to him for information. The BBC even featured him on a show about the experimental treatment he received in China.
On Sunday, he was at his computer reading e-mails from overseas, said Juhan Mixon, Thomas' best friend.
"No one expected it to happen quite as quickly as it did," said Candace McKibben, the pastor who is presiding over the funeral 2 p.m. today at the chapel of Bevis Funeral Home of Tallahassee.
In August 2003, Thomas was diagnosed with Lou Gehrig's disease, a fatal condition that causes motor neurons to deteriorate and muscle movement to diminish. Doctors say Thomas and the 30,000 others in the United States who have it usually have three to five years to live.
In the fall of 2004, Thomas couldn't wiggle his toes or raise his right foot. So Mixon helped Thomas raise $30,000 needed to travel to China to get millions of olfactory ensheathing glia cells from second-trimester aborted fetuses inserted into his brain and spinal cord in hopes of stimulating the other cells to work. The procedure is still in the experimental stages.
Thomas and his wife, Kim, went to Beijing Oct. 31, 2004, and returned Dec. 2.
When Thomas came back, he could walk and stand without a brace, Mixon said. He was even able to go back to work. In January, his condition deteriorated, and he was soon diagnosed with Lyme disease.
Ticks transport the bacterium that causes Lyme disease. The symptoms include a skin rash, fever, headache and fatigue, according to the Centers for Disease Control and Prevention Web site. If left untreated, infection can spread to joints, the heart and the nervous system.
Thomas was undergoing treatment for the disease, but it was in the late stages when it was diagnosed, Mixon said. Thomas could still walk but had to use a walker.
After extensive research online, Mixon said, Thomas questioned whether he had Lyme disease from the start or whether the diseases were interrelated.
Thomas never found out.
After the China trip, "We were all hopeful that he would get better," Mixon said. "We were hopeful that (if) we could treat the Lyme disease, he would be better."
posted
I have a friend who is over in India right now with her sick daughter.
They talked to Amy and researched it thoroughly and felt it was the only way to get her "on the other side" of getting well. She is very, very sick, not detoxing, unable to tolerate abx.
What I have heard is that the clinic gets all their stem cells from one donated embryo. Patients are given daily spinal shots to improve the immune system. The plan was to treat her with IV rocephine at the same time.
She has been there one month and so far treatment has not gone smoothly. She had to be hospitalized and last I heard they weren't sure if they could continue now. Again, she is very, very sick. They talked to four people who went before them and all add improved significantly.
I am anxiously awaiting her results and will consider taking my daughter there if the results end up being good. It is a lot of money, but we will spend that much over years instead.
Dr H also emphasized that it is not a cure and that treatment needs to continue.
I know that they brought something herbal with them to help with coinfections, not sure what.
I think that Amy has gone back to India for additional treatments.
I heard that someone is doing a documentary on the clinic starting this month highlighting a Lyme patient, MS patient and a quad- and para-palegic.
I'm definitely keeping an eye on this treatment, personally.
Marla
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
| IP: Logged |
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
quote:Originally posted by 4Seasons: I have a friend who is over in India right now with her sick daughter.Marla
The poor poor darling-this made me cry, my thoughts and prayers go out to her and her family lets just hope they find a way forward for her.
It makes you realise suffering with this ilness as an adult is tough but for a child and a parent to see this happening to her child must be terrible.
We all have to believe that protocols and treatment will improve and a better outcome will come for her and everyone else.
posted
I've begun researching this treatment recently for my daughter, who is very, very ill, without going into too much detail, I am mainly interested in this treatment for its effects on the Neurological system. Hearing that paraplegics have made progress at the clinic is VERY promising to us.
It's unfortunate this treatment is in India, as we cannot transport my daughter there... she's too ill.
Does anyone know where else this treatment is being done?
Posts: 371 | From CT | Registered: Jun 2008
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
There is a clinic called Medra in the Dom. Republic doing something similar...run by an American doc.
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
posted
I believe stem cell therapy repairs the damage, and possibly boost immune system ( by making new material to build immune cells from available).
I did not know before today that you could actually get it! - seems like a great last resort option for those with damage done .
Its kinda pricey though - and it will probably stay this way seems as most regulatory agency seems dead on trying to completely shut down those clinics. We will not see this in the west for a while and high demand will keep the prices up in countries with lax regulation (seriously if you have ALS/MS/Alzheimers etc 35k is nothing for most people in the west)
Posts: 856 | From MA | Registered: Jul 2009
| IP: Logged |
posted
There has been some movements in stem cell research in US as well. Here is a piece of news on the FDA and Stem Cell:
FDA Approves Company's Application To Launch First ALS Stem Cell Trial Tuesday, September 22, 2009 - By Duncan Osbourne, Stem Cell Business News / Stem Cell Research News
Rockville, Md.-based Neuralstem, Inc., (NYSE Amex: CUR) said on September 21 that the FDA has approved its application to launch a Phase I trial to treat amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease) with its spinal cord stem cells.
Neuralstem says it is the first company to commence a stem cell trial to treat ALS.
ALS is a progressive fatal neurodegenerative disease that affects nerve cells in the brain, leading to the degeneration and death of the motor neurons in the spinal cord that control muscle movement.
Preclinical work has shown Neuralstem's cells to extend the life of rats with ALS.
The trial will study the safety of Neuralstem's cells and the surgical procedures and devices required for multiple injections of Neuralstem's cells directly into the gray matter of the spinal cord.
The FDA's approval represents a significant step toward delivering regenerative medicine directly to damaged neural cells in humans. ALS affects roughly 30,000 people in the United States, with about 7,000 new diagnoses per year.
"While this trial aims to primarily establish safety and feasibility data in treating ALS patients, we also hope to be able to measure a slowing down of the ALS degenerative process,'' said CEO Richard Garr.
"In work with animals, these spinal cord stem cells both protected at-risk motor neurons and made connections to the neurons controlling muscles,'' said Dr. Eva L. Feldman, who will direct the Neuralstem clinical trial program for ALS. ``We don't want to raise expectations unduly, but we believe these stem cells could produce similar results in patients with ALS."
The ALS patients will be treated through spinal injections of its patented human neural stem cells.
This first trial, which will primarily evaluate safety of the cells and the surgery procedure, will ultimately consist of 18 ALS patients with varying degrees of the disease.
The FDA has approved the first stage of the trial, which consists of 12 patients who will receive five-to-ten stem cell injections in the lumbar area of the spinal cord. The patients will be examined at regular intervals post-surgery, with final review of the data to come about 24 months later.
Neuralstem expects to conduct the trial at Emory University with Dr. Jonathan Glass, M.D., director of the Emory Neuromuscular Laboratory and Director of the Emory ALS Center, as site principal investigator (PI) and with Dr. Nicholas Boulis, M. D. performing the neurosurgery. The overall PI for the ALS trial program is Dr. Eva Feldman, M.D., Ph.D., director of the University of Michigan Health System ALS Clinic and the Program for Neurology Research & Discovery.
Neuralstem is targeting major central nervous system diseases including: ischemic spastic paraplegia, traumatic spinal cord injury, Huntington's disease and amyotrophic lateral sclerosis (ALS, Lou Gehrig's disease).
I also noticed a note about a german or austrian clinic which offered stem cell treatment for heart diseases but they were called a scam , probably because it is not mainstream.
About the Mike Thomas guy, he never had treatment for the lyme and so it is not surprising he died. The other patients did know they had lyme and had lots of treatmetn for lyme already.
Posts: 366 | From Europe | Registered: Nov 2008
| IP: Logged |
posted
M0Joey Thank you, thank you for posting about this. I have spent most of the night reading Amy's blog.
It is wonderful -- she's so brave, as you are -- to make her illness's ups and downs very public so that others can benefit.
There's a post by a friend who also got treatment in India and he said this:
-During my stay, I also saw other patients improve
There seems to be a lot of misunderstandings about the HESC treatment in New Delhi. Dr. Shroff has treated over 600 patients since 2002--she has been at this for at least 6 years and NO negative side effects have been observed. Of course, this includes no tumor growths. She has treated all kinds of ``incurable'' conditions. Only one human embryo has been used. The stem cells from this one embryo could theoretically treat everyone in the world. It is also important to understand that no immunosuppressant drugs are needed. No animal ``feeder'' cells are used. For me HESC has been a very effective treatment for the damage caused by lyme disease."
If this is really true-- that in 6 years this doc has had no one suffer bad side effects from her treatment -- that would be amazing. Her treatment is safer than well... than my cooking, for sure. :}
Like you said. This is big.
I am going to talk to my doc (who is also Amy's doc) about this. I didn't even know this was a possibility.
Thanks again
Posts: 27 | From San Francisco, Ca | Registered: Apr 2007
| IP: Logged |
posted
CD57, the doctor with the clinic in the Dom Republic is a cardiologist. He does heart, severe pulmonary and peripheral artery disease. He is located in Florida.
He uses the patients stem cells, meaning adult stem cells.
We found out about this from a friend who had a friend go for this proceedure for his dying heart. The patient was on the golf course in 4 months. You would never know he was dying of heart failure. His cost, a few years ago, was $40,000.00. The cost is now up to $ 50,000.00 for the proceedure.
While this medical group helps many people, they can't help LD. But, it is good to know about for heart and pulmonary diseases for those that can afford it.
Posts: 671 | From Fort Myers, Florida | Registered: Jun 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic