Has anyone here had stem cell therapy either in Mexico, India, or elsehwere? If so, embryonic, umbilical or your own? What was your experience and did you have any results? Thanks
Posted by mojo (Member # 9309) on :
Hi Scott:
I've not had stem cell therapy but I am very interested in this.
Did you mean stem cell therapy for Lyme?
Thanks
Posted by seibertneurolyme (Member # 6416) on :
Scott,
Have you ever tried hyperbaric? Supposedly one way to increase stem cells.
This link is to a neurologist who was a neurosurgeon before he got interested in other things.
Have heard a lot about this from one CA pt who went to India for her Lyme. First (US) pt for Lyme that went. I don't think the docs over there had seen it before. She keeps a blog as to how she's doing.
It doesn't seem to be a cure but did alleviate her symptoms for awhile. Also seemed to help with some side conditions such as thyroid and other problems.
Posted by amybscher (Member # 15858) on :
Hello,
I am the patient from CA who went to India for embryonic stem cells. I never post on these boards but I had heard about this thread and thought I'd share my story.
I am doing amazingly well. I've had chronic Lyme (Babesia and Bartonella) for 7+ years and my complications included neuropathy, arthritis, tremors and twitches, brain lesions, cardiac problems, chronic nausea, etc.
Post stem cells, all of my pain is gone, I am off all narcotic pain killers, all tremor medication, all heart medication, my brain lesions improved greatly (as measured by SPECT scans), my food allergies are gone, and the list goes on. I'm finally able to be off of antibiotics for the first time since my diagnosis.
I believe this is possible because of my previously aggressive antibiotic treatment and the new improvement of my immune system with the stem cells.
Before deciding to go to India, I failed all treatments that I tried (including almost 100 hyperbaric oxygen sessions). I feel that antibiotics did a good job to lessen the bacterial load, but my body was so deteriorated from the disease, something needed to repair it from that perspective. Embryonic stem cells did that for me. It is like I am a new person now.
Since I was the first patient to go through this, we don't know what the future will hold. But, so far, I've had a six month stretch of health and that's six months more than I ever thought I'd have again in my lifetime before I went to India.
The doctor's technology is unique as she is using ONE donated embryo to treat and endless number of patients. She is the only one that I'm aware of in the world using embryonic stem cells in human application (she just filed a patent). Her stem cells are 100% pure (meaning no chemical, animal feeder cells, etc.).
I can't say the treatment is right for everyone but it is thus far, the biggest blessing of my life. I hope this information has helped those who are interested understand it a little better.
It is not a cure for Lyme (stem cells won't kill bacteria) but I believe it will strengthen the immune system to better cope. My personal opinion is that much of a Lyme patient's pain, fatigue, etc. after they have had proper treatment, is not necessarily due to active bacteria but the devastation of what has happened in their bodies over the years (degeneration of nerves, muscle, etc.).
I'm always available for questions if anyone would like to know more. I'm going back to India in July for 3 weeks for a booster series (I was there for two months the first trip). I blog at www.healthcarehacks.com and update often for anyone who would like to follow.
Many blessings, a
[ 14. June 2008, 02:32 PM: Message edited by: amybscher ]
Posted by djf2005 (Member # 11449) on :
thank you so much for sharing this information.
can you give us a ballpark price on the cost for this?
i am so glad it helped you. this is great news.
derek
Posted by amybscher (Member # 15858) on :
The cost is different depending on each case. I believe it is anywhere from $35K up at this time.
That cost is for 2 months treatment (or more for some patients like those with MS), plus room and board at the hospital.
You must take a caregiver (or spouse, friend, etc.) with you. Their meals are included in the price as well. They stay in your hospital room on a fold-out futon type mattress.
Posted by MarsyNY (Member # 7766) on :
Amy,
I couldnt read through your fascinating blog fast enough. Thank You for putting it out there for all of us to share.
What an amazing journey, you are a true pioneer.
(and I never left my seat)
Maryann
Posted by djf2005 (Member # 11449) on :
thanks so much for the reply-
is there a website or anywhere i can get more info on it? hospital, on the dr, etc?
thanks!
so would you consider yourself close to remission from this? no abx now required?
Posted by cottonbrain (Member # 13769) on :
checking out Amy's site, I found this link to be the most concise and easiest to understand (for me) as per how stem cell transplant works:
YES, I consider myself well. The key will be staying this way and I feel my next trip to India will help further improve my immune system, and also help to clear the rest of the brain lesions.
I did a round of antibiotics a couple of months ago (for 4 weeks) because Dr. Shroff wanted to make sure if there was any bacteria left, my cells were protected.
I am currently on Mepron to make sure the Babesia stays under control. I was off of it with no problem when I got home from India. My Lyme doctor wants me to do one more month (better safe than sorry with Babs).
It's a balance now because although I don't feel I need the meds, if any of the infections got out of control, they would infect my new stem cells and could undo the amazing work they've done.
There is one Lyme patient who went a few months ago and just returned. Two more will be going this summer as of now.
If anyone is seriously considering it, they can contact me through my blog.
Be well, a
Posted by oxygenbabe (Member # 5831) on :
Amy, that's a very spirited and beautiful blog. Many blessings to you!
It's interesting. I remember reading that people with aplastic anemia could be "cured" with a chemotherapy drug that wiped out their immune system and then they could rebuild it from scratch, with proper "information." If the stem cells are working, it's not because lyme hasn't infected them, it's because they aren't burdened with an information loop of inflammation and autoimunity--I'm speculating. And they may also help repair tissue as you noted.
Hyperbaric oxygen stimulates your own stem cells but I'm not sure that's the same thing.
The only thing that worried me a little was the lactation, growth hormone (like pregnant woman) and hunger/weight gain. I just wonder, even though your interview with the doctor assures it's safe, whether this type of therapy could stimulate tumor growth (if a person had a tumor but didn't know it). IE excess growth hormone can do that, I'm pretty sure (exogenous, not sure about endogenous from stem cell therapy). Please keep us posted or have the other lyme patients guest post on your blog if you don't mind.
Again thanks for a beautiful, spirited blog.
Posted by amybscher (Member # 15858) on :
I think you have a good point about the new stem cells not being susceptible in the same way to the Lyme as before. It's all unknown. I do know that my thyroid and other autoimmune issues are gone completely because my new cells are doing precisely what you explain.
About the lactation, growth hormones, etc. My Lyme specialist is totally comfortable with all of these changes. As my body accepts the stem cells, it is reacting like I am pregnant (and in a sense, I am with the cells). We're continuing to monitor levels. Luckily, the insane hunger has decreased dramatically recently
The level of growth hormone I have has not increased above average for someone going through pregnancy, so I have been assured not to be concerned with cancer/tumor risk from this.
Regarding tumors in general...some scientists believe that embryonic stem cells cause tumors. I did a ton of research when I started this and it's ONLY in mice. Mice developed them in the first six months typically, and none of her patients over 6 years has had one. Dr. Shroff insists this happened from injecting human stem cells in mice. Human stem cells in humans will not (according to her) have the same effect.
Thanks so much everyone, for your kind words and interest in my story. Part of my pull to go to India was not only to help myself but to follow this journey in hopes one day others could benefit.
Posted by amybscher (Member # 15858) on :
I just re-read this sentence and it seems maybe you are referring to if I already had a tumor, it could be dangerous.
"I just wonder, even though your interview with the doctor assures it's safe, whether this type of therapy could stimulate tumor growth (if a person had a tumor but didn't know it)."
Extensive testing is done before any treatment is starting (MRI's, SPECT, scans of abdomen, ultrasound of legs and neck, blood work, etc.). So, I believe they are careful about ruling out anything that might prevent safe treatment.
Posted by oxygenbabe (Member # 5831) on :
Hi Amy. You're young and so imo less at risk (tho I could be wrong). However, I would say that's the one hazard of this therapy and their reassurances about six years and a relatively limited number of people is not enough to know. You'd have to follow a larger # over say, 20 years to see if there was a higher incidence of cancer. And indeed, sometimes pregnancy with its high hormone levels can stimulate tumors that were somewhat indolent before. I would say this is a risk with this therapy, and unfortunately like all new therapies they are reassuring its safe so that people will do it. As for testing for tumors ahead of time via MRI etc you can only do a certain amount of testing of the whole body.
I would suspect someone is more at risk in middle or old age, at times that cancer is more likely to manifest anyway. Reason that out--as they say, you are producing hormones at a level for a healthy young pregnant woman. So even though you're not pregnant, your body is supposed to do this kind of thing at your age, and probably tolerates it. On the other hand, take a fifty or sixty year old lymie. Well, they shouldn't be putting out the hormones of a pregnant woman.
I have found in these alternative "out of the box" treatments, practitioners are unwilling to honestly state the risks. For instance, I respond well to hyperbaric oxygen therapy. There *are* some risks especially to vision, because of oxidation of the lens. I have not met one clinic director who takes this seriously except the one where I went in Great Barrington and she's now retired. No matter what I said to them, and no matter the evidence I had firsthand from talking to patients who had many treatments and to experts in research on hyperbaric and cataracts etc, the clinic owners would not admit it. They talk only about reversible myopia. I think they are afraid that if they said there was even a small risk of impairment of vision to some people, they'd lose a lot of clients. This is unfortunate.
In addition, this is not to say not to do the therapy. It's fascinating that you feel, even temporarily, or perhaps long-term, so well, so quickly. It really gives insight into the nature of lyme disease. I remember the first summmer I got it, taking doxycycline and not doing too well with it (helped somewhat, probably caused a massive herx too, but longterm didn't do much to the bugs). I also tried cholestyramine that summer and magically within 24 hours all my pain and stiffness vanished. However the sugar in the cholestyramine really bothered me and my bladder so I stopped. Still, it was amazing that all the pain and stiffness vanished that quickly from a resin that binds toxins in the gut. So its the toxins that drive the immune system crazy.
Meanwhile, fast forward a few years and there was a sugarless cholestyramine available. I tried it, and it didn't do anything for my pain. This said to me that by that time, I had gotten into a bodywide information-loop rut. That my whole body had adjusted to the "information" that the toxins created, the upregulation of inflammatory chemicals, the autoimmune aspect.
So, I think the stem cells really show something valuable.
Also, I hope you stay feeling so well. It sounds like a miracle for you. I'm also eager to hear how other lymies do. Just because something has a logical (reason it out scientifically and you can see why) risk doesn't mean one shouldn't do the therapy. Life is about quality of life, after all, and risks abound.
Posted by amybscher (Member # 15858) on :
Thanks for your thoughts oxygenbabe. I definitely understand where you are coming from. Of course, I do know since this is so new, the long-term consequences (if any), are unknown. The doctor readily admits this.
For me though, I couldn't not try this treatment. Despite my eternally optimistic attitude, in all honesty, my quality of life before this treatment (at age 28) was not anything I was willing to settle for when there was something out there that could help me.
It's not right for everyone, but I do believe everyone has the right to choose for themselves.
Blessings, a
Posted by oxygenbabe (Member # 5831) on :
I agree, Amy. Again, as your doctor's said, you were putting out the growth hormone of a healthy pregnant woman. And at your age, lactation would be normal (ie late 20's is a time women get pregnant) and so in a sense your body expects it. So I would expect that long term risks wouldn't be that high to you unless you kept doing the therapy longterm.
I'm glad it helped you and curious to hear how the second batch helps you and how you do over time.
I do think it probably has risks but as you point out your quality of life was not good and clearly you'd tried antibiotics, hyperbaric etc.
Most interesting to me is speculating on why it works and thinking very carefully about whether at some point lyme disease becomes self perpetuating and rejiggers the entire immune system through inflammation created by the toxin. And this might be why the stem cell therapy is useful but if we understand *why* it works then we might have other avenues to create the same solution.
Posted by amybscher (Member # 15858) on :
As far as the lactation, only myself and one other woman have experienced this. So, perhaps it wouldn't happen in an older woman? She is 40 which is still child bearing age. I am curious as to why this happened to us out of all the hundreds of patients but it's quite interesting.
My Lyme doctor was the one who tested my growth hormone so I'm not sure if this elevated level is present in other patients.
Only time will tell now. I'll definitely keep all of you posted. You can sign up to receives updates from my blog as well.
Posted by kylasrain (Member # 12031) on :
I am leaving for India in June, 2010 until August 2010. If you would like to follow my blog or learn more about my experience, like Amy, please visit:
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