Freedman has found his own cure

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby cheerleader » Wed May 05, 2010 7:04 pm

Autologous haematopoietic stem cell transplantation fails to stop demyelination and neurodegeneration in multiple sclerosis


The present study analyses autopsy material from five multiple sclerosis patients who received autologous stem cell transplantation. A total of 53 white matter lesions were investigated using routine and immunohistochemical stainings to characterize the demyelinating activity, inflammatory infiltrates, acutely damaged axons and macrophages/microglial cells. We found evidence for ongoing active demyelination in all of the five patients. The inflammatory infiltrate within the lesions showed only very few T cells and CD8+ cytotoxic T cells dominated the T cell population. B cells and plasma cells were completely absent from the lesions. High numbers of acutely damaged axons were found in active lesion areas. Tissue injury was associated with activated macrophages/microglial cells.The present results indicate that ongoing demyelination and axonal degeneration exist despite pronounced immunosuppression. Our data parallel results from some of the clinical phase I/II studies showing continued clinical disease progression in multiple sclerosis patients with high expanded disability system scores despite autologous stem cell transplantation.


http://brain.oxfordjournals.org/cgi/con ... 130/5/1254
This is a study. It is science. It is not my opinion. The doctors tested the brains of five MS patients who had received this treatment. The treatment Dr. Freedman has received 4 million dollars to study. The treatment we are talking about on this thread. Upon autopsy, the treatment HAD NOT STOPPED MS(demyelination or neurodegeneration) in ONE SINGLE PATIENT tested.

There is nothing personal here. It is just fact.
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Postby Lyon » Wed May 05, 2010 7:16 pm

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Postby thisisalex » Wed May 05, 2010 11:14 pm

Lyon,

you still dont get it. The aim of my post was that a real scientist should defend his results, even if it is about fishing with dynamite.

BUT a real scientist must NOT attack an other theory, which only requires a few hundred ultrasound examinations and a few hundred well-tested- 1-hour-surgery to prove its effectiveness.

We are talking about money here, and not about science. That man defending his money and not his scientific results.

you see what i mean?

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Postby Johnson » Thu May 06, 2010 12:09 am

Again, I don't even try to fool myself that HDC/Revimmune or Campath 1h are the MS "cure" but anything that has an immediate and obvious effect on MS is new and interesting. As you mentioned, it is a lot like using dynamite for fishing but any satisfactory ending is the result of perfecting things which were far less certain in the beginning.

If CCSVI proves to be nearly what people hope at that point I would gladly drop my interest in rebooting for CCSVI and I look forward to that time, but it isn't here yet.


The thing is, far more people have received benefit from the treatment of CCSVI than have from blowing away the immune system. The Italian patients who did not re-stenose report benefit 3 years out. Most Stanford stentees report benefit a year out. That is nearing 100 people, and I have not read that of a like number of stem cell therapy recipients (mind you, I have not looked for that information, and don't care to.) How is it that PPMS and SPMS are reporting some immediate benefit from treatment for CCSVI, but chemo/stem cell therapy does not have any effect on the same group? Something is missing from that equation.

Not to be too personal, but you do write of your interest in "re-booting" the immune system. Just what is your interest in that? It is not your immune system that is on the line, and it is not your brain that is on the line. Really, why ought any of us here - who are suffering - care what your interest is? This forum is populated by people seeking CCSVI information and treatment. What is your interest here? It is a public forum, and all are welcome, but it seems to be an intellectual exercise for you. It is not such for us.

Mark my words, there are going to be some very nasty results from destroying immune systems. There has already been at least one death in a cohort of 18.
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Postby sbr487 » Thu May 06, 2010 12:35 am

I think most of these treatments will become second line of treatments once questions around CCSVI are unraveled, which I think is just a matter of time.
For example, areas that are hard or risky to operate ...

I really cannot think of anyone heading for stem cell, campath etc if liberation works out. I for one would want to fix the issue at the root then suppress the symptoms alone ...

To extrapolate, tomorrow if a gene is found to be the culprit for CCSVI then I would prefer a gene therapy and liberation would go into background ...

I think scientist community should accept that they have messed up and make way for more promising methods ...

But i don't know if parasites like Freedman/Khan would give up so easily ...
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Postby HappyPoet » Thu May 06, 2010 6:07 am

Johnson wrote:Not to be too personal, but you do write of your interest in "re-booting" the immune system. Just what is your interest in that? It is not your immune system that is on the line, and it is not your brain that is on the line. Really, why ought any of us here - who are suffering - care what your interest is? This forum is populated by people seeking CCSVI information and treatment. What is your interest here? It is a public forum, and all are welcome, but it seems to be an intellectual exercise for you. It is not such for us.

Johnson, Lyon has MS.

Lyon, remember to play nicely.
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Postby Lyon » Thu May 06, 2010 6:42 am

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Postby cheerleader » Thu May 06, 2010 7:21 am

Research---it always comes down to the research:

Here is another paper co-authored by Dr. Mark Freedman--
discussing a very nasty side-effect of his treatment...brain atrophy

Brain atrophy after immunoablation and stem cell transplantation in multiple sclerosis

The authors measured brain atrophy in nine patients undergoing immunoablation and autologous hematopoietic stem cell transplantation for multiple sclerosis. From baseline to 1 month after treatment, atrophy was 10 times faster than before treatment. A patient with non-CNS lymphoma showed comparable acute brain atrophy after analogous therapy. These observations suggest that brain atrophy after immunoablation may not be due entirely to the resolution of edema but may be related to chemotoxicity.


http://www.neurology.org/cgi/content/ab ... 66/12/1935

Patients have the right to read the published research. Not to be shamed or mocked by some anonymous commentator on a forum. The CCSVI forum started with an intriguing research paper and we continue to link to the research as it is presented. I just posted the new genetic paper linking CNVs of venous malformation and MS last week. The stack is growing.

Freedman has published a lot of research regarding his trial--and there were many problems. Death due to liver toxicity, brain atrophy, and continuing demyelination and neurodegeneration. I would not call that a resounding success...
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Postby sbr487 » Thu May 06, 2010 7:42 am

I can't hold it against Zamboni because all researchers do it, but 15 variations of the same information by the same authors doesn't really equal 15 worthwhile articles.


Bob, I am trying to understand, why do you think the 15 articles are just rehash of the same info?
My belief is that they have been uncovering quite a bit of interesting stuff as they continue to research.

Truth is, a more dangerous regimen has been used against cancer for around 50 years with known and "favorable" results by using high dose cyclophosphide to kill the immune system


Bob, pardon me again here but what has cancer got to do with immune system?
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Postby Lyon » Thu May 06, 2010 7:43 am

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Postby Lyon » Thu May 06, 2010 8:06 am

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Postby patientx » Thu May 06, 2010 8:25 am

Johnson wrote:Most Stanford stentees report benefit a year out.

I'm not sure this is accurate. Approximately 40 patients were treated at Stanford. Only about 20 reported anything here at thisisms; that's only half actually reporting anything. (I realize some may have their own blogs).

In that group of 50% reporting here, many have reported improvements, like improved fatigue and less brain fog. Based on reports here, two patients were essentially cured of their MS. But many others have been vague.

Others have not or cannot report benefittng from the treatment.. There was one tragic death, and one patient had severe complications as a result of the stent procedure. At least three reported no benefit, and one person seemed to get worse. And many of that 50% group that posted here no longer report anything.

So, of the half that we have heard from, the results have been a mixed bag.
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Results so far

Postby PointsNorth » Thu May 06, 2010 1:46 pm

I think that drawing conclusions from results of trials/treatment thus far is problematic as it seems like PPMS people appear in trials in disproportionate numbers to the overall MS population. 40-50% in trials/treatment and 15% in the general population. I think that results would look more promising if the population of PwMS were more accurately distributed in initial trials (85%RR/15%PP). Am I off base?

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Postby Johnson » Thu May 06, 2010 2:44 pm

Lyon wrote:I guess if your hand were caught in a bear trap or if you'd just been bit by a poisonous snake most people would like to involve the thought process of someone whose effectiveness of thought wasn't tainted by the desperation of direct involvement.

I can't speak for others here, but my own desperation dissipated once I had a diagnosis that explained what was happening to me 17 years ago, and I was told that there is "no known cause, no cure", etc. Since then, it has been abstract self-observation, and resignation/acceptance.

You are partially right about all "this" partly being an intellectual exercise for me. Because of their reputation for confounding science so long autoimmunes have been an interest of mine since the early 1970's. I didn't have any personal stake in it until the early 21st century when my sister was diagnosed with Grave's disease, brother with Crohn's, wife with MS and Hashimoto's, my Dad with Hashimoto's and me with Hashimoto's thyroiditis.

I am sorry that your family is so touched by dis-ease. My understanding of Hashimoto's is that it is an auto-immune dis-ease. Have you considered, or do you consider, immune system ablation as a treatment for yourself? Or, are there medications that keep it in control? (I will have to look it up some day when my mind has more room. Right now, it's pea soup in here.)

I'm sorry that your wife has Hashimoto's and MS. Has she been screened for CCSVI? The reason I ask is because I have thyroid issues that I believe are related to impairment of venous drainage from my thyroid. My own screening revealed that there are an "extraordinary number" of collateral veins emanating from my thyroid. I have a strong feeling that once the jugular occlusions are remedied, my thyroid will function normally once again.


Johnson wrote:Not to be too personal, but you do write of your interest in "re-booting" the immune system. Just what is your interest in that?
Being a little farther from the trees than you are...

Don't make judgments, Bob, that is always folly. There are no trees, nor forests, where I am - adrift on a vast, and featureless sea.

Johnson wrote:Mark my words, there are going to be some very nasty results from destroying immune systems. There has already been at least one death in a cohort of 18.
You're an adult and it's only up to you whether you should familiarize yourself with the subjects you speak about.

I really ought not to have not been so imperative, and written that I feel that there will be nasty results... in relation to those with MS/CCSVI. I really don't speak, or write about it because I know little about it. I just feel that those whose immune systems are nuked will ultimately have recurrence of MS - because I do not believe that MS is auto-immune. I never have.

There can be no doubt that there are a lot of influential people who are watching CCSVI with interest but the bottom line is that real DOCUMENTED evidence and not a few people on a website who have been treated while NO ONE seems to know how many have been treated and that we haven't heard from.

Well, it is more than a few. The Tracking Project thread here has 75 submissions, which range from a worsening (Rici), complications (Radek), some with little to no effect, but quite a few with remarkable improvements. Certainly, the jury is still out. I will form my own opinion after I have my own experience. Ultimately, it is my own experience that counts to me. The theory makes sense to me - in my own situation, with my own personal observations. You can be confident that I will report critically my own result. I am though, very encouraged by what I have read.


So, you do not have MS, Bob? I'm glad of that.
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Postby Johnson » Thu May 06, 2010 2:51 pm

patientx wrote:
Johnson wrote:Most Stanford stentees report benefit a year out.

I'm not sure this is accurate. Approximately 40 patients were treated at Stanford. Only about 20 reported anything here at thisisms; that's only half actually reporting anything. (I realize some may have their own blogs).

In that group of 50% reporting here, many have reported improvements, like improved fatigue and less brain fog. Based on reports here, two patients were essentially cured of their MS. But many others have been vague.

Others have not or cannot report benefittng from the treatment.. There was one tragic death, and one patient had severe complications as a result of the stent procedure. At least three reported no benefit, and one person seemed to get worse. And many of that 50% group that posted here no longer report anything.

So, of the half that we have heard from, the results have been a mixed bag.

Fair enough. I never did say that my mind is clear, and my thoughts concise. (I am actually having trouble reading these days)

It is too bad that the reporting tapers off. I always wonder if they have regressed and are too depressed to write about it, or if, like the Italian fellow who 'forget(s) what it is like to have MS', they have just moved on, and resumed their interrupted lives. I hope - for them - that it is the latter.
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