My daughter

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Postby Loobie » Fri Jun 12, 2009 9:36 am

Chris55 wrote:This is such a personal disease and everyone has to do what is best for him/her. I spent hours/days/weeks/years researching this disease and came to my own conclusions. I was thrilled my daughter was willing to at least try something different. I support anything that will not kill you or cause you to mortgage your home and soul. I am forever humbled to God and Dr. B for her incredible improvements!


Amen sister, God love the mother, Suzy is a very lucky girl.
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Postby CureOrBust » Sat Jun 13, 2009 6:58 am

Chris55 wrote:If I wanted to try the course Suzy took, I would first start with 2 bottles of the Streptocept and take a double dose (2 tablets 3 times a day). If after using the supplements up, I felt no different, I would not pursue. But if you experience any kind of improvement, I would continue.
Chris, did your daughter do the "urine test" first? I think it would be unwise to assume that Vonner would prescribe the same supplements to someone else, like me prescribing medication (I know some people that this would make happy).

It is a more expensive path, but I think if you choose to follow this path, you should not sidestep the people who are the "Authorities" on this treatment. Admittedly, "Steptocept" was one of the many supplements I was also sold.
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Postby Chris55 » Thu Jul 02, 2009 11:03 am

Hey Cure...she did do the urine test...and then re-tested..and she continues to do the testing once a year. Her initial test called for the Strepocept only but she decided she wanted to do the entire thing---everything! I think it took about 6 months to get through it all! Now she just does the re-test and also takes supplements that are recommended for whatever malady she may be dealing with. (Has some bad digestive problems and she took something? for that. Also working on losing the 80 lbs from the solumedrol treatments, etc.)

Do I believe she is "cured" of MS? I don't. Do I think they have a clue in hell what it is...I don't. So as long as she does well on the supplements, she will stay on them. She knows she can go back to her MS specialist any time she wants.

She is going to have some surgery on her ankle..she will not allow them to put her to sleep because many people with MS have problems. Her surgeon does not put MS patients to sleep. So she takes whatever precautions she can...
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Postby Chris55 » Tue Jul 07, 2009 7:56 am

Hey Cure...my only point was that an investment in the Streptocept is a very small investment. If it does nothing then I don't know that I would go the full Monty. They do have another supplement that improves nerve health (Nervox I think?). My daughter never goes off of that one and it does seem to help with nerve function.

Just saying it is worth a try if someone is interested but not really sure they want to do the full investment.
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Postby CureOrBust » Wed Jul 08, 2009 8:22 am

Chris55 wrote:... and it does seem to help with nerve function...
It helped her, but it did nothing for me.
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Postby Chris55 » Thu Jul 09, 2009 8:55 am

I know and I am so sorry for that! It was literally like a miracle for my daughter...well, it was a miracle! Her improvements were breath-taking!

But don't give up....I am convinced there is something out there that will help (more than conventional meds, I fear.) I would do as much research as I could...and then do some more! I did that when Suzy was first diagnosed. I actually created a kind of catalog system..actually found lots of very interesting information, many I "shared" with Suzy but never tried to force on her (although I wanted to!)

For me I guess the biggest problem I have uncovered is the fact that the medical community really has NO CLUE what causes this dreadful disease OR if everyone has exactly the same thing. Very frustrating for all of you I know but also for a "mom".

I wish you the very best in this journey Cure and will pray you find something that will help you like my Suzy! Chris
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Postby robbie » Thu Jul 09, 2009 9:06 am

It was literally like a miracle for my daughter...well, it was a miracle! Her improvements were breath-taking!

Chris do you think that the natural way ms is meaning the relapse and remissions has anything to do with Suzy’s miracle. Some people go from being committed to a wheelchair during a relapse to back up and walking when the relapse subsides, this may look very much like a miracle but it’s not.
Had ms for over 19 years now.
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Postby guitarguy » Thu Jul 09, 2009 9:46 am

robbie wrote:
It was literally like a miracle for my daughter...well, it was a miracle! Her improvements were breath-taking!

Chris do you think that the natural way ms is meaning the relapse and remissions has anything to do with Suzy’s miracle. Some people go from being committed to a wheelchair during a relapse to back up and walking when the relapse subsides, this may look very much like a miracle but it’s not.


Yes, I had a relapse so bad I was in a chair for 9 months or more. This was over 10 years ago. I did recover and nobody would know I have MS. I really had no symptoms of MS for many many many years after my serious relapses, but I just started to this past year.

All I have to say is, I been there done that. There is no miricle when it comes to MS, that's just how the disease is for some of us.
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Postby BEZALEL » Thu Jul 09, 2009 3:27 pm

Hi Chriss55 and all,

I think it is great your daughter is doing so well, with this treatment she is taken and tolerating it. One can call it a miracle or not. That you take the time, help and find the time to support her is wonderful.

I am bit older than your daughter, and I think it is hard for my father to accept my condition, I am doing pretty good, just weakness on my left leg and lower arm hand. And sofar I tolerate the Rebif, started Dec. '08.

One think, that someone wrote with the relapses, coming and then being gone for quite sometime. I know someone, after given birth to her daughter in her early 20, she experience her eyes went bad and she could not see, she was given something and it got better, almost 50 years later, due to a fall, going to the Doctor, she was diagnozed with MS.

There is so much research going on. A pill will come out next year, to strengthen the muscle, which my Neuro tells me, will make me walk, like I used too......then there was a stem cell research being done last year in Israel's Hadassah Hospital in Jerusalem, which made the Canadian Lady, be herself, she can play better golf than before.....but did not hear more abt. it.There is an article about it, please see below.

So whatever, makes your daughter feel good and helping her in this struggle, she should try, better than sitting around and worrying/pittying.....I realized doing a lot of exercise,: yoga/tai chi/swimming what ever one can do, and being out among people helps me get stronger. Watching how much of my energy I use throughout a day, not to get to fatigued before the day is over......

I understand we are all different in this, and I am trying to accept this condition.....but it is still all to new, and I am not the same......seeing I have to miss a bus, when last year I was running after it to make it.

I love to dance as well, and hope one day I WILL!!!!!! :)

Bezalel

"Hadassah Hospital: Issue 2009

Medicine:
Back on Course
By Wendy Elliman


Debbi CooperThe success of a therapy using adult stem cells to treat multiple sclerosis at Hadassah is
encouraging news for those who suffer from MS and other neurological disorders..

In 2007, Canadian golf pro Louise Zylstra was given the grim diagnosis that she had multiple sclerosis. By early 2008, she was not only unable to play 18 holes, she could scarcely walk 50 yards. Her doctor in Ottawa told her she would likely be in a wheelchair within two years.

“It was a disaster,” Zylstra told Canada’s CTV National News. “When you think you might not play golf again and that’s what you do....” She was speaking in mid-November 2008, soon after returning to Canada from eight months of treatment at the Hadassah–Hebrew University Medical Center in Israel. Not only is she walking easily again, she is back on the golf course. “It’s night and day,” she told CTV. “It’s a complete 180-degree turn from where I was.”

Neurologist and multiple sclerosis specialist Dr. Mark Freedman of the Ottawa Hospital, who had diagnosed Zylstra and told her there was no cure for her illness, acknowledged to CTV that she had “recovered substantial function very quickly…. She’s out golfing, and out-golfing most people, which is quite incredible.”

Zylstra is one of 35 people to undergo the world’s first adult stem cell therapy. “Until recently, stem cell therapy was a theoretical treatment, still more science fiction than fact,” says Dr. Dimitrios Karussis, neurologist and neuroimmunologist in Hadassah’s neurology department. “The trial in which Louise Zylstra took part is the first time that adult stem cells have ever been clinically transplanted anywhere in the Western world.”

The results of this transplant are so exciting that representatives of major medical centers from Europe and North America are meeting in London in the next few months to discuss the Hadassah protocol directly with Dr. Karussis and his collaborators—Hadassah neurology head Dr. Tamir Ben-Hur, former Hadassah bone marrow transplantation head Dr. Shimon Slavin, Hebrew University of Jerusalem biophysicist Dr. Adi Vaknin and Dr. Celementine Karageorgiou, an associate at the Neurological Center of the G. Gennimatas General Hospital in Athens.

“We’re planning to set up an international multicenter Phase 2 trial of this treatment with adult stem cells, to examine it further, improve it and hopefully make it more effective,” says Dr. Karussis.

This is encouraging news not only for the tens of thousands worldwide struggling daily with MS but also, potentially, for the many more afflicted with other devastating neurological disorders—among them amyotrophic lateral sclerosis (Lou Gehrig’s disease), Parkinson’s disease, Alzheimer’s disease, stroke and spine injuries.

Multiple sclerosis was, however, the first focus for Dr. Karussis. Born in Salonika, Greece, he has lived in Israel since 1988, researched bone marrow stem cells since 1990 and now heads Hadassah’s Multiple Sclerosis Center.

“Our department at Hadassah is one of the leading stem cell research centers in the world,” he says. “It made sense to combine my research with my clinical experience....”

The Hadassah center treats about a third of the thousands of Israelis battling the autoimmune inflammatory disease of the central nervous system. Most were diagnosed before age 40.

“MS is the commonest cause of neurological disability in young adults, occurring in about one in 2,000 people,” explains Dr. Karussis. “It’s more frequent in countries further from the equator and, in Jewish populations, is found more often in Ashkenazim than Sefardim, at a rate of three to one.”

In MS, the patient’s immune system goes rogue and attacks the fatty white myelin sheath that insulates the neurons or nerve cells. The result is functional deficiencies in vision as well as in the sensory, motor, balance and sphincteral areas.

While doctors know a great deal about the mechanisms of the disease process, its cause or causes have yet to be found. Medications that ease symptoms, return function and prevent new attacks help some patients, but in others are ineffective or produce adverse effects. Until, perhaps, now.

“We’re exploring how stem cells can be used to regulate or reprogram the malfunctioning immune-system cells that destroy myelin and perhaps even to enhance regeneration of both myelin and neuroprotective mechanisms,” says Dr. Karussis. “What’s new is that we’re using the patient’s own stem cells to do so.”

It was only recently that researchers at Hadassah and major medical centers in the United States and Europe discovered that each of us carries small reserves of a different type of stem cell, one known as mesenchymal. These are flexible young cells, as yet uncommitted to turning into the many different types of human tissue—but, importantly, with the potential to do so.

Until this discovery, the only adult stem cells to be therapeutically exploited were blood-forming or hematopoietic stem cells. Generally provided by matched donors, they have been used in bone marrow transplantation for over 30 years to repopulate blood. Other than this, however, cell therapy research has focused on the ethical minefield of stem cells from embryos.

The adult mesenchymal cells, however, have several important advantages over the embryonic kind, as the Hadassah team learned. First, because they are harvested from the patient, there are neither ethical issues to limit their use nor rejection problems, making treatment safer. Second, there is little danger of this type of cell turning malignant after transplantation. And third, they can be cultured and expanded easily: within two months, a purified population of up to 100 million adult stem cells can be produced from a single patient.

A further plus is that these reserves of adult stem cells have turned out to be more plentiful than once thought. Scientists have found small quantities of them (roughly one stem cell per million cells of tissue) in brain, bone marrow, peripheral blood, blood vessels, skeletal muscle, skin and liver. Their probable function: repair of damaged tissue.

“You may question, as we did, why we need to graft these cells if they already exist in the body,” says Dr. Karussis. “We don’t have a firm answer, but it could be their small numbers limit their ability to migrate to damaged areas, or they don’t receive the signals to migrate.”

Whatever the reason, Hadassah physicians decided to give nature a hand and move these healing cells to where they were needed. In mid-2006, Drs. Karussis and Slavin launched the world’s first clinical trial with adult mesenchymal stem cells.

“Seven years of research in animal models of MS and in the lab with human tissue, together with Hadassah’s clinical bone-building and bone marrow transplantation programs, convinced us that a clinical trial was both safe and justified,” says Dr. Karussis. “We examined two very disabling conditions in this trial: multiple sclerosis and amyotrophic lateral sclerosis. The former is an inflammatory disease in which neurodegeneration is secondary, resulting from the inflammation. In the latter, degeneration of central nervous system cells is the primary pathogenic [disease] process.”

During the two and a half years that followed, 15 patients with MS and 20 with ALS joined the study, over half from outside Israel. “There’s no effective treatment for either ALS or the progressive phases of MS,” says Dr. Karussis. “When patients, such as Louise Zylstra, heard about the trial, they were anxious to be included.”

In this Phase 1 study, 35 were dosed with their own stem cells. Some 25 million cells were administered to each intravenously and another 60 million by lumbar puncture, directly into the spinal fluid.

“Our aim was to see whether therapy was feasible and that it caused no harm,” says Dr. Karussis. “Both were demonstrated. The sole side effects were mild headache and a three-day fever.”

Although evaluating efficacy was not a study aim, the investigators naturally made preliminary clinical observations. And it’s these, combined with the protocol’s feasibility and safety, that have excited the medical world.

“In the trial, the cells showed special properties,” says Dr. Karussis. “They reduced the destructive inflammatory process and so prevented further injury, and they also appeared to promote recovery processes in the brain.”

In practical terms, the stem cells stabilized the neurological condition of the ALS patients. Among the MS patients, some, like Zylstra, showed an impressive response, recording an improvement of about one degree in their functional score. Among the very severe and chronic MS patients, however, there was no such response—perhaps because years of degeneration have created damage beyond repair.

The Hadassah researchers have planned two further clinical trials. One is the extensive multicenter Phase 2 trial to be set up at the London meeting. “One modification we’ll suggest is multiple injections of stem cells, as there were indications that efficacy decreased over time,” says Dr. Karussis.

Another is testing other types of stem cells. “Experience gained in this first clinical trial with adult mesenchymal stem cells is providing a critically needed platform to advance our work with different types of stem cells currently in the development pipeline,” adds Dr. Ben-Hur.
For the past eight years, Dr. Ben-Hur has been working with Dr. Benjamin Reubinoff, director of Hadassah’s Human Embryonic Stem-Cell Research Center, to develop the use of neuronal precursor cells (infant nerve cells) derived from human embryonic stem cells. They are planning a clinical trial, substituting these neuronal cells for the mesenchymal cells used in Dr. Karussis’s trial.

“We’re excited, but we’re realistic,” says Dr. Karussis. “We still have a lot to learn. We’re working with the building blocks for all human tissue, and I don’t think any of us would care to predict, at this stage, how far this may take us.” H"
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Postby Chris55 » Fri Jul 10, 2009 1:07 pm

I actually do understand the nature of MS--truly! Her improvements were not the "normal" kind and when she last went to her MS specialist, she hod no active lesions, no new lesions and all her old lesions were disappearing. (I was most interested in THAT visit than her testimonials while she was taking the supplements!)

And again, I do not think she is "cured"...don't believe in that right now. All I do know is the supplements did things nothing else had ever done..and continue to do so even today.

As I said...I am not very impressed with the medical MS knowledge that we now have. I am a strong believer in Lyme's Disease as a culprit for many of you. I am not convinced you all have exactly the same disease. Let's say perhaps that some of you are reacting to some kind of food allergy, some LD, some from Celiac's Disease or some from something they haven't even discovered yet! (Perfect example: the stomach ulcer.)

So I guess my biggest position in all of this is I DO NOT think this is an autoimmune disease and I am not convinced you all have the exact same illness. And who am I? Well, a nobody really. Just an opinion based on days, weeks, months of my own personal research.

For now, these supplements seem to be making a huge difference for Suzy. She knows the MS road very well...she still has her MS Specialist if she ever needs him...and it is important that we all live like recovering alcoholics...one day at a time...constantly educating and always praying and being grateful for the many blessings we DO have!

I really hate this disease and what is does to people. It is just so unfair! And I am not the kind to go quietly into that dark night...and I will always fight, fight, fight! But if the day comes that I have to just accept...I will! But probably not very gracefully--LOL!

Again, just trying to share something with all of you that "might" be of benefit to one or some of you...that's all.

And Bezalel...I understand completely how your dad feels...it is so hard for those who have this disease, but trust me when I say we parents also suffer terribly. We would--in an instant!--trade places if only we could! Be patient with your dad..he just loves you so much! And thanks for the great article! We will all keep our fingers crossed on this one. Take care of yourself Bez and I will include you too inmy prayers--Chris
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Postby BEZALEL » Fri Jul 10, 2009 1:28 pm

Thank you Chris.......Bezalel :)
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Postby Chris55 » Mon Jul 13, 2009 6:49 am

Okay...I just have to "share" my new joy--just found out yesterday my beautiful SUZY is pregnant!!! I am SO EXCITED! Love to you all...Chris
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Postby BEZALEL » Mon Jul 13, 2009 1:10 pm

M A Z A L T O V !!!!!!!! :D :D :D Bezalel

There is a study out there, apparently, when you are pregnant having MS a women's estrogen level is higher......

http://www.nationalmssociety.org/news/n ... px?nid=225
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Postby Lyon » Mon Jul 13, 2009 1:58 pm

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Last edited by Lyon on Sat Nov 26, 2011 11:31 am, edited 1 time in total.
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Postby Chris55 » Tue Jul 14, 2009 6:07 am

YES Bob...my first! (Unless you count my daughter's little chihuahua who has been living with me for the past 6 years...I always called him my first grandson!)

She went to her OB/GYN yesterday. When he asked about health issues, she told him about her MS diagnosis. His eyebrows shot straight up--LOL! Asked if she was on any meds, blah, blah. blah. She explained her natural treatment for the past 3 years. He explained the stoppage of MS while pg and the HUGE relapse possibility after birth but feels since she has had not any real issues in 3 years, she will probably be fine. She has contacted Vonner for their additional guidance. And she is TERRIFIED she will lose the baby! Yesterday she told the doctor, "I am scared to death!" and burst into tears!

I told her to ENJOY and trust in God...He will take care of her and her baby. If something happens then it was not meant to be. And her doctor pointed out: Now you know you can get pregnant!

Lots of emotions rolling around..I am just plain giddy! I have 3--count them THREE--children and this is my FIRST!!! We all live in different cities and I am trying to sell my house here so I can take early retirement and move up with my girls.

Hope all of you are doing well...thanks! Chris
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