My mom is in India for treatment

[helpingmum]

I have been monitoring these forums off an on for a couple years, my mom has ALS and has most recently decide to travel to India for Stem Cell treatment. Everyone she has talked to have been very positive. I thought anyone suffering with ALS would be interested in it. Her blog is very personal, but I would be happy to share the address to those that want it, she is now recounting her time in India, her treatment started two days ago. It will be very interesting informatin. Please feel free to email me at epc@shaw.ca if you would like to know more.

[Al]

Of course they are going to be positive. Do you really think they would say " Give us 30 to 50 thousand dollars. We will drill holes in your mums head and stick in God knows what and send her home to Canada with an unknown and unproven treatment where there is no legal recourse if she dies. I can not believe that people that are smart enough to accumulate this kind of money to do this are still falling for this. Like P.T. Barnum once said, " There's a sucker born every minute" Sorry if I sound jaded but you say you have been monitoring for 2 years and just now want to post about a stem cell program in India? India you say? Sounds like you are a shill for them. I don't think you are helpingmum at all. I think you are trying to help yourself.
AL.

[mamaoftwo]

This seems a little harsh to me. This girl is probably hanging on to a desperate hope and wanted to share the experience in case it can be of use to others.
I too havent heard of any success with stem cell, quite the contrary, but we are all allowed to live with hope, arent we? I know you no doubt feel that you've been around the block and have seem enough scams to know one when you see one - and your're right, I get that. But let her have a little hope even if it's misplaced. What harm can it do at this stage? Or am I missing something completely?

[John1]

Mamaoftwo,

I'm thinking Al is using a sledge hammer approach to get this woman's attention, if in fact she's for real. It is hard to believe that someone who has monitored the ALS scene for two years or more could fall for this rubbish. Generally it's the newly diagnosed who know no better. What harm you say in travelling to a third world facility to receive substandard "health" care. Lots. Several PALS died or suffered severe side effects after travelling to Beijing for "stem cell" treatment at another quack's hospital. Unless she is very rich she is wasting money that could be used much better to improve her quality of life now. If she IS very rich, the money would be better spent on ALS research. Now that really would offer some hope.

-John

[mamaoftwo]

Ok, John, I understand what you say. I guess I am not on to the scammers yet and didnt realize this might be bogus. But arent there also people who still believe, in spite of all medical evidence to the contrary, that stem cell is the cure-all treatment. I thought maybe she really believe it might save her mother. At any rate, I appreciate what you say and if a rude awakening is what is needed, then it certainly worked.

[helpingmum]

My apologies for posting. I was under the assumption this was a loving open environment. I haven't read all of your forum, obviously I've missed something. I don't follow daily, in fact I haven't been here for a few months. I've been meaning to post as I seemed remiss in not sharing. Whether her treatment works or not. No Drills that's for sure. And no side effects, other than one woman who contracted delhi-belly.

If you happen to have some results of people seeking treatment in India I would love to be directed to them. That may better than trashing me. Unbelievable. And I will share this with the ALS society here, I don't think you should be allowed be so brutal.

My mum has spoken to many patients of this Dr. I am not here to try and convince anyone, but I thought since my mom has offered herself up as a guinea pig as a last ditch resort to save her own life, someone would want to know here. I certainly am happy that for two months she has hope, as all the Dr's and obvious some people here have given her the reverse of hope.

All I can say to Al is, think before you write. I know who you are, I've seen your article in the Globe and Mail and I am very sorry you have ALS. But, it doesn't give you a right with such power over people on a forum to burst all the hope bubbles you can.

Let's hope you are wrong. I am very disappointed at being treated like this from you on an open forum.

Thanks for the complete an udder lack of support. I'm certainly glad I didn't send me mom here to post!

[Icanmanz]

Of course they are going to be positive. Do you really think they would say " Give us 30 to 50 thousand dollars. We will drill holes in your mums head and stick in God knows what and send her home to Canada with an unknown and unproven treatment where there is no legal recourse if she dies. I can not believe that people that are smart enough to accumulate this kind of money to do this are still falling for this. Like P.T. Barnum once said, " There's a sucker born every minute" Sorry if I sound jaded but you say you have been monitoring for 2 years and just now want to post about a stem cell program in India? India you say? Sounds like you are a shill for them. I don't think you are helpingmum at all. I think you are trying to help yourself.
AL.

Hats off to you, Al! I agree with you 100%! If that was the case this planet would be als free!!!!!!

Irma

[patricia1]

Al is very protective He is looking out for us I for one have been scammed many times .Desperate people do desperate things A word of caution. I guess if you think your mom is dying and she has nothing to lose.Your wrong She could get very very sick in India away from the states Which can be very scary. God Bless you and your Mom.

[helpingmum]

It would be most helpful if people know about scams in India if they could fill me in. I most likely won't give out mom's blog to any more people for fear of this hopelessness spreading to her.

But since this is a discussion forum for all to participate in, I would be very grateful for information about any scams in India.

Also, perhaps you should start a folder on the main forum page for scams, it would be easier than trying to dig through all the posts.

All the treatments are different, my mom has chosen this not me. She has read alot and interviewed alot of people. And perhaps, hopefully, one day because of all these tests there will be a cure.

Thanks for the help if you can provide it.

[alicesangels]

hello all,
My Mom passed in 2003,,,this is the first time I have been in a ALS forum for awile, like 3 yrs. I was her caregiver from first dx till she passed.
Go for it,,whatever your Mom wants,,,do it
Jeannie

[jimercat]

helpingmum,

Let us know the outcome of your Mums's experience.

If she makes great strides against ALS, please , do let us know!

All of us will be waiting and wondering about how much it will cost and whether our loved ones will be able to talk or walk again.

By the way there is a "Scam" watch in front of the forum.

I'm very sorry if you are for real, but perhaps you need to research more.

[helpingmum]

I can see times have changed greatly in that no one trusts anyone, mostly I suppose because I am new. I'm not selling anything. In fact my mom's blog is basically a diary of this adventure she is going on, I haven't said it's going to work, and yeah it could kill her, appreciate that reminder. It has been her decision and she has struggled with it. It has renewed hope for us for these few weeks and I am grateful for it.
I doubt anyone is going to hop on a plane and go to India because of my post. I think I would have to be a little more convincing.

I have spoken with a woman and mom met her last week in India who had the treatment for paralysis and she has had improvement, she's actually a motivational speaker in Colorado. I think the stem cells (and they are all different I know depending on where you get the treatment) work better if you don't have some disease in your body making you ill in the first place that kind of counteracts the stem cell good. My mom's doctor in India thinks she started with Lyme Disease and there is a long story there, but I'm not going to replay it. If you've just had an injury then it may be easier for the stem cells to repair. I don't know everything, but learning lots over the past two years, but mostly recently as my mom does all her own research.

Not selling anything, not a crook. But I think it is important information. I only posted for people to follow along that were interested. Mom is going to video tape herself as she has only just begun treatment, that way she will be able to show if she improves. She hasn't had any physio, but they are trying it there, we'll see what happens with that.

She is going to get sick as they are going to put her back on IV antibiotics, which makes her herx(sp?) terribly, (for lyme if she has it) so that won't be fun to be sick so far away and I imagine that the IV drugs will be more concentrated than the pills/liquid she used to take to make matters worse.

I think her friend who is a writer is trying to get her on Fanny Keifer when she gets back, I'm sure they will go through all the scam issues on that as well. I looked through your scam page, but couldn't find anything on stem cells, did I miss it?

The woman in colorado who was paralyzed (still is but regained bowel so far) is trying to get on with Oprah. It is interesting times and it is important to keep hope I think. I admire my mother greatly for her courage, she is a very strong willed and determined person. and I'm just tagging along for the ride and supporting her any way I can.

Am I to assume that Al was being rude to me, in hopes of pissing me off and making me rebuttle?

It worked.

There are lots of people being diagnosed every day with this disease, I think you should ask more questions before being so rude to newcomers.

Thank you to those that have had some kind words, even more appreciated. I don't mean to be angry, but Al's response caught me extremely off guard and seemed very inapporiate without any context.

[Al]

Hello helpingrmum. I am sorry if you are really who you say you are for my seemingly harsh remarks. I spend anywhere from half an hour to 1 hour every day, every single day removing advertising and known scams from this site posted from all over the world but mostly from Eastern Europe and do you know what they do? They join and post the same day. Just like you did. I have not heard of stem cell implants in India. We have some members here from India and to a one they complain of lack of care and facilities in India for ALS. It just seemed very strange you would post the first time you EVER post and ask people to contact you about a clinic in a foreign country known for the poverty there. Your outrage should be directed at the people who took your money not at me. We do have a caring group here. We care enough to question people who appear to have an agenda. Your post came across as that type. You said that you have read here for a few years and didn't know we had a scamwatch feature. I'm sorry you didn't see that before. I have never burst any one's hope bubbles. I promote hope and positive thinking where there is hope but do not condone false hope.I am a realist and thought that even though your profile says you are Canadian there is really no way of knowing if that is true or not. If you read the Globe though you must be Canadian. I am truly sorry for offending you or your mother but you are not the first to be here for ulterior motives. The ALS Society of B.C. is aware of our site and has cooperated with us in the past year to remove postings here from people purported to be representing them. Feel free to ask about my dealings with them. I have nothing to hide. As I said in my original post, sorry if I sound jaded but maybe I am just a little.
Al.

[Al]

Well I did get your attention and do you know what the first thing the salesmen do when they reply? They call me rude, insensitive, ignorant, mean spirited and hope killer and then trash the site. Yes it happens every month or so. Most times when something is suspect it is just removed by the Administrator or Moderators and the person is asked to reply to a Private Message. I have not received one reply in 2 years. I would love to see some documented proof that any treatment anywhere gives more than a few months benefit. So far there is none. That isn't rude, it's the truth. Sorry I come off harsh but I'm hard to convince. As you admit, times have changed and people need to be wary.
That's part of the support of this site. Making people who may be taken advantage of, more wary. We have over 3000 members. Most are happy. Usually it's first time posters that aren't. I hope you can understand my position. I do understand where you are coming from.
AL.

[MtPockets]

Helpingmum,
I'm sorry you were offended, but below is just one example of hundreds we have seen on this site. If you go to the search icon above and put in stem cell, you will see some of the same results mentioned below.

No one on this site is out to kill anyone's hope, but false hope is sometimes worse, and being scammed is criminal, in my humble opinion.

I totally support AL and his comments to you, as we have to address this same subject about every 2 weeks here. It will never go away as long as someone is out there trying to get your money.

God Bless your mum and you, and I hope and pray for the best for her.

We just wanted to warn you these things are dangerous. and DO NOT WORK. Sorry.

God Bless
Capt AL
________________________________________ ________
Quote from previous post:
Originally Posted by MtPockets The results of this "treatment" you are speaking about is, It does not work. There is no cure for ALS, period.

This is their, "OPERATIVE PROCEDURE: With the procedure of cell HLA-matching, the surgical transplant of olfactory ensheathing cells procedure by using stereotactic technique was performed on September 10, 2006. 100 µliters containing approximately 2,000,000 cells was injected into the corona radiata of the patient’s frontal lobe bilaterally based on the Flair MR imagin".

The great results for this patient who was basically paralyzed, was that she could move her tongue a little better???? And her bank account was drained to the tune of $50,000 to $100,000, just so she could move her tongue a little better. Come on now get real, face the real world. It did not cure her of anything. Is this the kind of torture you want for someone? Much less the false hope this gives to people.

This scam does not work, has not worked, and will not work, at the present time. We are all hoping and praying for a breakthrough in this research and maybe one day soon it will come. Do a search above on the search icon and enter stem cell treatment and see what you find. 100% of the people who have tried it gave their money to people like this for what? NO results, for nothing, but to fatten someone's bank account. Some of these people in these foreign countries are not even qualified Doctors by our standards in the USA.

I'm sorry but when I see other ALS patients being sucked into these scams I really get mad. Right now they are discovering the country of China is putting poison in our dog, cat food, and now this week they found contaminants in the chicken we are buying from them. God knows what else is in the foods we are buying from them, just because businesses can buy CHEAPER foods from China than from our own farmers and manufactures.

Do you think I would trust them to open up my skull or my loved one's skull and put in some experimental stem cell that they got from a pig, sheep, goat, or whatever? NEVER.

Hey, it's your choice what you do with your money, but don't try to con other people into this false hope treatment.

As for me my money is better spent on a nice vacation with my loved ones. Something they can remember after I am gone.

God Bless
Capt AL

[Jamiet]

Helpingmum....

Please don't take what you are told about stem cell personal, everyone is looking out for your best interest. Most think, the money would be better spent on getting items to comfort her life better, but that's our opinion.

We appreciate what you are doing for her, we are all grasping at straws.

I have a company that is fixing to open business in India. There are absolutely NO regulations. MY COO was there 2 weeks ago and an Indian told him a very interesting fact... He told him..."India is a TRUE democracy..anybody can do whatever they want here...WHATEVER..." India is a really dirty place, while the people are very good people and actually some of the best people i have ever met, there is so much poverty that the the many streets are slums, it stinks the sewage due to no waste treatement. There is so much poverty there, i feel terrible for those people, we employ about 500 of them overseas, they work for $800 - $1,200 per month, which is like making $20,000 a month here and it's a crying shame. Some there will do anything for money.

They are allowed exploratory stem cell treatement (good ones), but also hoax stem cell.

All we ask, is please be careful, we don't want you to get hurt, but in the same breath, i thank your mom for taking the risk, someone has to try these things to see if they work.

If you need us, we are here.

Also, please tell you mom, NOT to drink the water unless it's bottled. Use NO ice and get NO drinks from a fountain or a machine. You may find this funny, but my COO had a 9 hour plane ride home and spent 7 hours of it on the toilet....I lauged at him,but it couuld have been serious, he was so careful with his water and merely got a cup of coffee out of the vending machine in the British Airways Buisness Lounge on the way out...... Something like this could kill a PALS.

Rgds,

Jamie

[CindyM]

To helping Mum and anyone else who thinks we should be more "open" to alternative ideas: please stop and ask just a few basic questions. I would want to know:
how much does it cost?
is it covered by insurance?
do you have to pay for a list of referrals?
is the treatment associated with an actual acredited hospital?
has it been done in more than one country?
does your als clinic know about this treatment?


If the answer to any of these questions is "no" then I would ask why not?" This isn't an issue of being "open" and "loving." This is an issue of common sense.

Let's guit beating this dead horse. If you have a bucket of money to throw at somebody workign out of a store-front "clinic" then by all means, do so. Just please quit bragging to us that you have money to throw away. Most people here are trying to buy equipment because they have a disease for which there is no cure. Not yet. Not this month. Nowhere in the world.

So go. Take your treatment. And call us with the results. Maybe you will be able to say "I told you so." I hope so for the sake of everyone affected with this incurable disease. Cindy

[Paul.nagourney]

I support helpingmum !! It great to see someone else get in trouble for talking about stemcells.

by the way, this paper seems like an important breakthrough providing rationale for stem cell therapy....but if it was only that easy...i wish there was more we can do besides argue when someone shares stories....

Nat Neurosci. 2007 May;10(5):615-22. Epub 2007 Apr 15. Links
Comment in:
Nat Neurosci. 2007 May;10(5):535-7.
Astrocytes expressing ALS-linked mutated SOD1 release factors selectively toxic to motor neurons.Nagai M, Re DB, Nagata T, Chalazonitis A, Jessell TM, Wichterle H, Przedborski S.
Department of Neurology, Columbia University, 710 West 168th Street, New York, New York 10032, USA.

Mutations in superoxide dismutase-1 (SOD1) cause a form of the fatal paralytic disorder amyotrophic lateral sclerosis (ALS), presumably by a combination of cell-autonomous and non-cell-autonomous processes. Here, we show that expression of mutated human SOD1 in primary mouse spinal motor neurons does not provoke motor neuron degeneration. Conversely, rodent astrocytes expressing mutated SOD1 kill spinal primary and embryonic mouse stem cell-derived motor neurons. This is triggered by soluble toxic factor(s) through a Bax-dependent mechanism. However, mutant astrocytes do not cause the death of spinal GABAergic or dorsal root ganglion neurons or of embryonic stem cell-derived interneurons. In contrast to astrocytes, fibroblasts, microglia, cortical neurons and myocytes expressing mutated SOD1 do not cause overt neurotoxicity. These findings indicate that astrocytes may play a role in the specific degeneration of spinal motor neurons in ALS. Identification of the astrocyte-derived soluble factor(s) may have far-reaching implications for ALS from both a pathogenic and therapeutic standpoint.

[MtPockets]

"i wish there was more we can do besides argue when someone shares stories...."

We are not arguing with anyone. We are presenting a view for their consideration and information, based on the experiences and results of various members over years of seeking help.

You both are new to this forum, so to speak, and do not know the extent and experience our members have had over years of dealing with themselves and loved one's seeking help by any means possible, and sometimes losing their hard earned money and hope with treatments and programs that have just not shown any lasting benefit. Just as the one story I quoted where they had a slight increase in tongue movement. Big deal!

We love and care for our members and do not want to see anyone hurt by the scammers out there. Stem Cell treatment may one day offer some effect to help ALS patients, but currently it has failed.

By the way Mr. Paul, how many of our people have any idea what you just said in your post? We are victims of ALS, not research scientists.

At least communicate to us on our level.

Thank You
Capt. AL

[John1]

By the way Mr. Paul, how many of our people have any idea what you just said in your post? We are victims of ALS, not research scientists.

At least communicate to us on our level.

Thank You
Capt. AL
Al, aside from a 2 or 3 technical terms (eg. Bax-dependent) I had no trouble reading the abstract. I thinks lots of the forum members would understand the gist of it.

[jimercat]

"Nat Neurosci. 2007 May;10(5):535-7.
Astrocytes expressing ALS-linked mutated SOD1 releasefactors selectively toxic to motor neurons."

Astrocytes (also known collectively as astroglia) are characteristic star-shaped glial cells in the brain. They perform many functions, including the formation of the blood-brain barrier, the provision of nutrients to the nervous tissue, and play a principle role in the repair and scarring process in the brain. (from Wikipedia.)

This article isn't talking about stem cell applications for ALS, it's talking about astrocytes and their effect on the degeneration of motor nuerons. The mention of embryonic stem cell interneurons and their resistance to the astrocytes does not mean stem cell therapy is ready for patients.

No one is denying that stem cell therapy may be the way to go for future PALS, but until clinical research is established with identifiable parameters we will have no way of knowing for sure at this point in time.

I wish anyone well that is brave enough to take on stem cell therapy and that is wealthy enough to buy all the protocols that go along with it. I truly hope that their goal of getting better is met. But I'm not holding my breath.

[Paul.nagourney]

Great ! Now we are talking. Lets not argue about things we have no control over...there are charlatans who come across as such and there are charlatans in lab coats that pry on us through the guise of science and legitimacy.

Let us share experiences both positive and negative so that collectively as a group we may learn.

The "rationale" I was talking about was that since astrocytes seem to be responsible...at least in some form...and since bone marrow stem cells can become astrocytes ...well maybe in the future...there is some rationale...

children with Krabbe disease in which the microglia dont metabolize certain chemicals have been shown to benefit from cord blood stem cell therapy...maybe in the future it will be possible to use such methods to replace astrocytes...

im sorry i shouldnt have said rationale since that word is too strong..

let us think together and learn together so that we may demand of our scientists to do the right research that will actually help our loved ones as opposed to lining their own pockets...this is what i meant by charaltans in lab coats...how much money gets put into research every year and how little progress we actually see...

lets all stand up to ALL CHARLATANS and try to make a difference for ourselves and our loved ones..

THINK. We know know all 30000 genes that make a human. We know now all the cells. We know have animal models of every disease. The problem currently is not lack of knowledge but how to put everything together.

"Nat Neurosci. 2007 May;10(5):535-7.
Astrocytes expressing ALS-linked mutated SOD1 releasefactors selectively toxic to motor neurons."

Astrocytes (also known collectively as astroglia) are characteristic star-shaped glial cells in the brain. They perform many functions, including the formation of the blood-brain barrier, the provision of nutrients to the nervous tissue, and play a principle role in the repair and scarring process in the brain. (from Wikipedia.)

This article isn't talking about stem cell applications for ALS, it's talking about astrocytes and their effect on the degeneration of motor nuerons. The mention of embryonic stem cell interneurons and their resistance to the astrocytes does not mean stem cell therapy is ready for patients.

No one is denying that stem cell therapy may be the way to go for future PALS, but until clinical research is established with identifiable parameters we will have no way of knowing for sure at this point in time.

I wish anyone well that is brave enough to take on stem cell therapy and that is wealthy enough to buy all the protocols that go along with it. I truly hope that their goal of getting better is met. But I'm not holding my breath.

[CindyM]

OK but aren't we talking about two different things? Stem cell research holds hope for a number of conditions. But I thought this thread was talking about places that promise improvement, possibly even implying a cure, through therapy and treatment. I react strongly to the idea of treatment with a method that is still in the research stages. And early research, at that. Cindy

[jimercat]

Cindy,

You are correct and thanks for bringing us back to topic!

Research is ongoing but the human guinea pig has many places to go. I just hope that PALS are not harmed in the process.

[Al]

My point exactly. Paul is quoting scientific studies documented in real research labs by people with real credentials and published in respectable medical journals. Not some unnamed hospital in some foreign country with nowhere the controls we have in first world countries.
AL.

[shahneh]

Hello Everyone,

Thanks for posting that there is a hope. My Mom is been suffering for almost two years. She is in India, my family has tried best to get as much help to her with all kind of treatments except Stem Cell. I would like to know more about it and if it is impoving let us know. I would like to try it for Mom. People who are bashing about services in India should shut there mouth because they are lot advance in technology and medical researchs and they give best affordable services. India produces highest doctors, programer and engineers by so far in the world. Thanks. :)

[gbrown]

I just received my copy of the MDA/ALS Newsletter and this issue has an article about stem cell research. It says, and I quote "An intravenous infusion of umbilical cord cells significantly extended the life span of SOD1 mice, which have an ALS-like disease, as well as prolonged their motor function and decreased bio-chemical evidence of inflammation".

Maybe they are starting to get somewhere with this stem cell thing. I certauinly hope so.
Gordon

[Al]

Ok shaneh. First. Do NOT EVER tell me to shut my mouth. You come here the first time and start mouthing off about something you know nothing about. I did not and will not critisise the Indian people. I tell about clinics that give false hope and take peoples money giving false hope. Show me proof that stem cells work in humans right now. There is none. Not in any country in the world. I lived in Brampton for almost 30 years. It has one of the largest Indian populations outside India. You don't have to tell me of their abilities. I would ask that you respect other view points and not take this as an attack on the Indian people.

AL.

[cajuntexusa]

I do sincerley hope this works for her mom. This could be the breakthrough that we have been hoping and praying for.

There is no need to be harsh to anyone willing to go to the extremes to educate us and share with us their experiences.

I would like to know how her mother is doing after the procedure.

Take care,

[freddiesnetty]

First of all,
I come here for the moral support. I do not believe for ONE minute that Al would be trashing something that he did not believe may conclude to a scam......Jesus Christ the man has ALS dont you think that he would be the first to be on the bandwagon for a cure. I am sure that if he didn't go and take the time to take all the bullshit that comes through here to already suck us dry of what funds that we do have, then everyone would ***** about that.................For Gods Sake

We should ALL be grateful for all that he does. As a Cals I don't know where he even gets the energy to do any of this...........

Just an opinion!! And I am opinionated.............I am a redhead!!
He is just looking out for his own..............

If anyone is interested about that kind of stuff, there is a pm button......

Sorry about the language but after IKE I have other things to gripe about!!!
netty

[CindyM]

I think the majority agree with Al. I know I support him to the fullest. We have seen unscrupulous posters try to make money from PALS, since, at this stage of the game, almost anybody would do anything if they thought it would prolong his or her life.

I am not arguing with anybody who has the money and is willing to spend it on an untested and unproven treatment. I'd probably turn myself into a guinea pig too, if I had the funds. But this site will not be a forum for quacks pretending to be scientists or doctors but are in reality scammers trying to seperate our pals from their money. Al is very clear about that.

One last piece of my mind: (what is left of it, that is :smile:) we don't tend to argue with folks who are determined to try this for themselves, except to advise them their money might be better spent making memories with their loved ones. So do us a favor and don't argue that we should let others encourage PALS to try these untested treatments.

This site is about support. Sometimes the best support requires telling the truth, no matter how unpopular that truth may be. Cindy

[Sammantha]

I feel Al is letting this person know that we are not gullible....... Sometimes you have to do that in a way that may come off as rude, but it works... My grandmother whom i love and adore, is a self proclaimed psychic. She follows all these new health things, metaphysical things and what not. She is always sending me vitamins, nickel water?, health books, she even wants me to make this weird electrical machine?? I love her and thank her for the stuff......... None of it works! I let her keep sending them because this is her way of helping and trying to make me better after all she is in her seventies and is as healthy as a horse. One time she got on this kabuki mushroom tea kick and thought making at home would bring her in millions. She had buckets of these weird mushrooms all over her house..... God love her, anyways last year she took me to her friend who is highly intelligent?! He whips out a binder and has me hold my arm out and asks me questions for the next two hours. If my arm has resistance to a question than this means the question was true or something. Then i had to tell my subconscious to release it.... He closes his binder after all this and asks me how i feel, and i say my arm is tired. I feel no different, nice to have met you. Then the man had the nerve to say, well maybe my subconcious feels the need for me to be sick and that i am really not sick at all...... I wanted to cry but then i wanted to deck him and call him out. Out of respect for my grandmother i said we need to leave! I then told my grandmother do not ever do that again, and then i said what does that man do for a living, she said he is an electrician..... He was creepy and had a girlfriend who was a half wit that believed he was the next Edgar Cayce..... Because i did not buy into his binder of questions he felt threatened enough to question my validity. This is why i do not believe in alternative medecine. I have done the health, excersize and low stress lifestyle and nothing is haulting the progression and i sure as heck dont think going to a third world country is going to make me better.... Maybe a little more greatful for what i do have perhaps!

[Sammantha]

Ohhhhhhhh, after reading all the posts i just had to open my big mouth...... I am so tired of companies moving to India so that Americans can buy the service and the companys can make a crazy profit by taking advantage of the countries people. So American money is going out and nothing is coming back into the economy, dont even get me started on the economy....... Secondly doesn't India have the world's largest population?? So mathematically it would make sense that they would produce a higher number of doctor's and such. I dont look at a country and judge it by how many intelligent people it produces i look at it and judge it by the way it treats its own people and land.........................Did you know that Americans are hiring surrogate woman from India, because they can pay them less?? Not only are there surrogates here but there are millions of orphans right here in our country, and not only do people want to go all the way over there to procreate they want to do it as cheaply as possible. Countries that care about there people and land should stop supporting other countries that are not doing the same. And i am NOT saying that all these people are bad, i am saying we as Americans should not take advantage of there poor state! And it is is not just India that we do that with, China, Taiwan etc etc......

[Blizna]

Here is my oppinion from person of Europe and a person who was in India just as a tourist:

Their culture is much, much more rich and deeper than yours (american), that is old only a few centuries. They are not so rich of course, there is a lot of poverty outside the big cities, but those cities are modern and full of new, growing companies with large investment potentials.

Do you know why they COULD have really succesful threatment? Because there are no ***** who ban research due to stupid religion or false etique...they simply can afford experiment with much more stuff than western scientists, thats why many experiments are done just there.

With Chinese, their wisdom of healing is the oldest and even today we dont know why actually acupuncture works..but with many problems it really helps.

I dont say they really have cure for ALS, I dont think so.. But they can be much further in research because nobody is telling him "hey, this is against god". Fortunately, their religion is much more older and tolerant then "young" stuff with jesus..

No offence to anyone, just told you what is generally known but its not spoken about in western world..

[freddiesnetty]

Dear Blizna,
I can respect that and I do feel that here in our country that this disease is swept under the rug, I would never be the first to judge any one of the beliefs or culture, I was just saying that Al does not want the Pals nor Cals to be sucked dry, when so many of us have to depend on what little we do get from our countries funding. I was just not in the mood for the whole Al bashing. I don't even know if it was bashing....but I have been through hell and back the past week and I think we all are very fond and grateful to OUR Al.
netty

[Icanmanz]

Dear Blizna,
I can respect that and I do feel that here in our country that this disease is swept under the rug, I would never be the first to judge any one of the beliefs or culture, I was just saying that Al does not want the Pals nor Cals to be sucked dry, when so many of us have to depend on what little we do get from our countries funding. I was just not in the mood for the whole Al bashing. I don't even know if it was bashing....but I have been through hell and back the past week and I think we all are very fond and grateful to OUR Al.
netty

Hi netty, this is not a reply, only a "Good Morning!" You and I we are soooo far behind on this forum, it is not even funny! I have not read all of them yet, I am just browsing here and there. I still cannot believe that my lights are on! It will be a long time before I get back to the norm! My son Shannon and family took me out to eat last night at Cuco's (your neck of the woods.) We were there from 6:00 pm to 11:00 pm just shooting the breeze! Had a good time.

netty, let me know how Freddy is doing. What did he say when I called the other day? Is your electricity on? Am praying to God it is! Still nearly haf a million without power and water! How horrific!

Been reading some of these posts, but am not replying until later. We still have the wonderful bunch of folks, some have gone to Jesus. Love you netty and freddie. Wish you guys were Tomballites. God bless you all!

Irma;-)

[CindyM]

I have been through hell and back the past week and I think we all are very fond and grateful to OUR Al.


Thank you from all of us, Netty. It is amazing when you think that, as a PAL, Al takes time to read every post and enforce the owner's rules, and he is a volunteer. Plus he does it all with only one or two fingers with which to type.

David, who pays for this site, pays out of his own pocket. He is a young man and could easily find other ways to spend his hard-earned money, but he believes in this effort.

I feel blessed to know them both, and I feel blessed to know all of you. This is one of the best sites on the internet, IMO! :smile: Cindy

[BethU]

Hi Blizna,

I hope scientists all over the world are working on finding a cure for ALS. Every country and every culture has something special and unique to offer, but science itself does not recognize national boundaries. The scientific method is the same in every country. It doesn't matter if a treatment is offered in India or in Indiana. The important thing is: how rigorous has the research been and how reliable are the results?

If there is a PROVEN cure in India or China ... or Indiana ... I'll be on the next plane. :-)

BethU

And a BIG THANKS!!! to all the volunteers who keep this forum running. This means you, Al, and all the others.

[Blizna]

BethU: You probably mistunderstood what I have written :) No, scientist work differently in each country. It depends on the law system and unfortunately on the lobby groups of religinous people who are often against creating human embryos just for gaining stem cells and many more..this all slows all things down..They simply cant understand its nothing than group of cells, no gift from god but simple biochemistry..
Thats why in those countries can be research further and often it is (in those areas), their government makes no limits for research if it is for people and I really appreciate it.

There is difference between going to clinic for new med testing and going somewhere for miraculous cure...

Generally, the clinics etc. doesnt give you false hope and arent so expensive - they just need to try new meds..

But what I cannot understand are people who promise cure or threathment for PALS and know its fake..I cannot understand how someone could be so cruel and poor..

[givenin]

Stem cell cure in India? I am with Al give your head a shake if it was true it would be all over the news wouldn't it?Wouldn't there be more PALS talking about it,yelling from the roof tops! We all want hope we all want a cure. When my husband was first dx'ed everybody had a cure for him from chinese herbs to a little village in china that had the tea/ holes in the head. He traveled to Bangkok allot for work and came back with a vial of sheep stems cells that was supposed to be injected in the butt and thank God he wanted to check it out first to see if the company in New Zealand was legit which it was not and it only ended up costing us $300.00 for the vial which amazed me that customs let him bring it in. The other cure from this guy in Bangkok was a machine that would cure arthritis. This woman from Vancouver that is in India trying this treatment I am sure was not supported by the ALS clinic in B.C and I am sure that they gave her all the warnings about scams but that is all they can do and that is all that can be done here. We can only hope that maybe MAYBE this could be it but I doubt it.
My hope is for the woman in India is that it dosn't make her worse,it is tuff enough dealing with the disease as it is without adding to it with other crap on top of it.
This forum is great it is very informative on all good and bad things that happen to us in this battle and has helped me allot and many others.

Thank you David and Al and the others who put ther time in here keep up the good work

[joelc]

The only thing I would like to add here is eventually someone is going to go somewhere and the treatment will help. There always has to be that first person who takes the chance and ends up stumbling up something that helps.
I agree with the cautions being mentioned here, so far stem cells have not helped anyone. But I feel our best chance for a cure is with stem cells. Eventually someone is going to stumble upon how to make them work for ALS.

[Zaphoon]

Al,

I think "helpingmum" just seemed way too offended to ge genuine. I think you picked up on that one pretty quickly. You have excellent radar!

Zaphoon

[emjoi]

The only thing I would like to add here is eventually someone is going to go somewhere and the treatment will help. There always has to be that first person who takes the chance and ends up stumbling up something that helps.
I agree with the cautions being mentioned here, so far stem cells have not helped anyone. But I feel our best chance for a cure is with stem cells. Eventually someone is going to stumble upon how to make them work for ALS.

No. It doesn't work that way.

Eventually someone, after years of published research, will do trials with the backing of an internationally known hospital or research centre. And then the trials will be published and there will be big announcements all over the place.

It's not going to happen in some mysterious clinic in China or Russia or India or Venezuela.

[lostinlouisville]

I don't get offend easily about being Religious, But maybe aborting these "group of cells" that are a Gift from God isn't wrong either, Oh us crazy religious people, to think I adopted a 28 week fetus that is now 7 who was scheduled to be aborted one week later, but we just call him Jacob now, not a fetus, not a group of none blessed cells from God.

[lostinlouisville]

I am sorry if I was harsh, but I feel people should be able to talk about how they feel without bashing someone else. I had a Catholic Dad, I have Baptist in-laws and an atheist brother but the one thing we have a like is love and we don't let our differences get in the way of that, It's o.k. to feel differently about issues it's not o.k. to bash someone for being different than you.

[awieleba]

OH Lost and BLizna

I am glad you said something! I wanted to but thought against it. I agree, these 'cells' are a gift from God!!!
I am all for stem cell resarch, just not from human embryo's. I think they can still do stem cell research from blood cord banking. that is from the umblical cord from babies that is loaded with stem cells. Maybe this would be a better option instead of taking embyro's that are going to grow into babies.

the only thing that gets me through the day, these days, is my faith.

I am not going to debate this, I respect others point of view. I just dont think you need to be so offensive to people (not you renee). AND if you dont believe in God or Christ or whoever.....you have faith. YOu just have faith that your hypothisis is true or faith in evolution. I chose faith in GOD. we all have choices, so I dont begrudge you what you believe.

[Blizna]

Well, Im sorry if it was offensive to you.

People thought that lighting bolts are Gods anger, Earth is flat etc etc..today we know the truth but if you believe in your own, why not.

I dont want to debate this too, but thats why India can be further in this research - nobody there is against using stem cells from human embryos (early stages) so they can work faster..

[olly]

sorry but i am with lost and april on this one.
personally as a christian i would not fund or even have stem cell treatment even if it could cure me.
and i do not believe in abortion .
in psalms 139 v16 it says "your eyes saw even the embryo of me. and in your book all its parts were down in writing,as regards the days when they were formed"
going back in time even harming a unborn baby was punishable by death.
scientists are trying to play god with cloning and other things.
i watched a film on saturday called" the island",has anyone seen it?
they were growing cloned embryos to use as body parts,but they found letting them grow into full human beings worked better.
yes you may say it is just a sifi film,but how many things have started off in a film and ended up reality.
at some point a line has to be drawn,if we loose all human ethics and values then only god can help us.
this is my opinion and not open to disccusion.
take care.
caroline

[Blizna]

Religion...Hopefully this myth will disappear in next centuries just as oppinions that Earth is flat or that people with epilepsy are witches...

Not open to discussion too :)

I suggest stopping talking about this, we wont accept the truth of each other so why to discuss it..

[brendapals]

Just thought I would chime in with my insight for the day...............

We have a motto where I work, we all get along, we work to take care of our patients, and we never, ever, never discuss...............

RELIGION OR POLITICS!

Just a thought,
brenda

[Blizna]

Yes, I agree as I wrote in my previous post..no talking to this topic :)

[olly]

we all have personal opinions on such matters like this.
i just feel very strongly about mine,it is not completely based on religon but respect for potential human life.
i will try to keep my mouth zipped on such subjects in future:roll:
no hard feelings;-)
take care.
caroline:-D

[wright]

The most advanced stem cell research is occuring in Australia at the moment. India isn't even on the map because they simply don't have the resources. I just wanted to get that out of the way to start this post.

Contrary to "popular" belief, embryonic stem cell research is done here in the United States. The problem is that most of it is not funded by the federal goverment (there is some state funded research as well as privately funded research). The labs that are funded by the federal goverment have embryonic stem cell lines that were created prior to the federal government enacting legislation to halt funding to embryonic stem cell research. All other labs that use "newer" embryonic stem cell lines have to be funded by the state or privately as I said.

We are ahead of India and most countries (not all) when it comes to this type of research . . . believe me. Most of the best science is done right here because we have the most money and the most scientists. There is no disputing this. I was a scientist myself for nearly a decade so I can speak on the subject.


As far as any stem cell therapy that is touted to help people with ALS: it is completely bogus at the moment. They aren't close to any human protocols . . . or animal protocols for that matter. The research continues however and they are making strides.

Here is the reason stem cell therapy doesn't work as of this moment:

Stem cells more or less take-on the properties of the cells they are replacing. If stem cells were to be put in the spinal cord and/or brain of those with ALS, those cells would more than likely differentiate into the same dying neurons.

Another related point:

Let's just say for sake of argument, the new stem cells differentiated into healthy neurons. They would then have to grow axons (axons are what make-up nerves) out to the muscles they are supposed to innervate (axons can be in excess of 3 feet long depending on the muscles they are growing out to). Given the fact that axons grow at a rate of about 1 to 2mm a day (25 mm is an inch by the way), that means it would take about a month for them to grow about an inch.

So for those people that say they get immediate benefits from stem cell therapy aren't getting it because of the stem cells. It is either a placebo effect or they're lying. Once again, it is totally bogus and a complete waste of money (at the moment).

What needs to be done:

The scientists have to figure out what is causing the neurons to die. Once they fix that, the stem cells will be successful. Stem cells are more than likely not going to be the thing that cures ALS. If they can get a protocol worked out, it might slow the process, but it will more than likely not fix the underlying cause.

In my opinion, it will more than likely be genetic engineering that will cure ALS (and there is plenty of that type of research going on in the U.S. and we are at the forefront) coupled with stem cells.

By the way: genetic causes and familial causes of a disease are two different things, so the genetic engineering will benefit those with sporadic ALS as well as familial ALS.

One last thing I want to discuss:

There are a few labs in the world that have shown they can turn ordinary cells into pluripotent stem cells. Pluripotent stem cells are cells that can turn into any type of cell, which is what embryonic stem cells can do. If they can successfully develop that technique, the argument over embryonic stem cells will be moot, because we simply will not need them.

P.S. They produced those pluripotent stem cells via genetic engineering

P.S.S. I hope this doesn't discourage anyone from hoping . . . because there is a lot of research going on right now . . . so there is every reason for hope. Everyday is one day closer to a cure.

[Al]

The original theme of this post has been hijacked. Let's get back to it. Stem cell treatments as it stands today do not work for ALS. Period. Anyone who tells you otherwise is either misinformed or lying to get your money.

AL.

[wright]

Geez Al, you said it so much more concisely than I did. Maybe you should be teaching here at the university and save my students my long-winded lectures. :lol:

[Al]

Yup man of few words when typing but still can be long winded in person.

AL.

[Markbreton]

Al and Wright are soooooo correct. I've read all the posts in this thread, I see the emotions and personal feelings but in the end the previous 2 posts say it all. And thats leaving religion, nationality, etc, etc out of it!
Mark

[Al]

I checked a site for one of these places just today. They have blogs for former patients. Not one of the blogs had a entry past 3 months except one that had an entry last week saying the person was going back for more this week. His previous entry was in March saying he had more strength and could walk farther. Why the need for more now? He doesn't say.

AL.

[joelc]

No. It doesn't work that way.

Eventually someone, after years of published research, will do trials with the backing of an internationally known hospital or research centre. And then the trials will be published and there will be big announcements all over the place.

It's not going to happen in some mysterious clinic in China or Russia or India or Venezuela.


You must be apart of the medical community. LOL

I disagree with you and some of the cures in the past have happened the way I said. It is definitely possible and can come from anywhere, not just the places you mentioned. It could very well happen the way you stated as well, but that is not the only way things happen.

I like mine better, the way you propose takes to long and we will all be dead and so will our kids by the time they develop a cure your way.

[olly]

sorry al,i should know better than my outburst earlier.
consider my hand slapped.

wright,i am always amazed by your abundance of knowledge and the fact you explain it in terms we can understand.

take good care.
caroline:-D

[lostinlouisville]

I am sorry too.

[MtPockets]

WOW, My computer dies thanks to a virus, and I am gone for a week and come back to see the same old tired and worn out, "Someone going for stem cell injections".
Please, whoever is considering such a procedure, use the search function above and see what has been discussed time and time again here about this worthless procedure. I know everyone grabs onto anything they think will give them HOPE. But, sadly this is a scam and does not work.

Peace to you all.
God bless AL, David, Cindy, and the others who put up with us all.

In case you have not guessed by now, I do not see how you could have missed it, I am one of those who believe the bible is indeed the word of God, and Jesus is my Lord and Saviour. You can call me a Jesus freak and I take it as a compliment. I respect each and every one of you, to have your own opinions, regarding religion as well as politics. I do not judge them, only God has that ability or right. So please, enough with the negative comments about religion. This site is for ALS victim support, not to bash people's personal beliefs. When I say support, telling the truth about procedures that do not work is support. We are just trying to keep you from wasting your money.
Walk a mile in my shoes. Been there done that. Bio feed back, hypnotism, acupuncture, etc.......