This Is MS Multiple Sclerosis Knowledge & Support Community

Cece wrote:Just as an aside, we do have a 78 page thread where phlebotomy (blood letting) is being attempted as MS treatment. There is some logic supporting it. And some personal successes with it.
http://www.thisisms.com/forum/chronic-c ... c9480.html

There is some logic and there are personal success stories for every purported MS treatment.

centenarian100 wrote:

Cece wrote:Just as an aside, we do have a 78 page thread where phlebotomy (blood letting) is being attempted as MS treatment. There is some logic supporting it. And some personal successes with it.
http://www.thisisms.com/forum/chronic-c ... c9480.html

There is some logic and there are personal success stories for every purported MS treatment.

Actually, that holds true for the DMDs as well, except they cost a fortune, require repeated MRIs and injurious lab tests and risk death. I think the placebo effect may well account for their "success".

Consider that once a patient feels he/she is being treated, she can relax, the body no longer tenses up and CNS fluids flow freely. Dr. Owiesy's idea that a disregulated autonomic nervous system can trigger spasms in the smooth muscle of the brain's draining veins to cause blood back jets and inflammation suggest that whatever relaxes an MSer may well prevent "attacks". Massage might be just as effective.

Remember what Nancy Reagan said about drugs. "Just say NO".

Best regards, Vesta

No apology required, who is this guy anyway?

Whoever he is pointing to one online media article that some sort of proof that then requires certain others and apology is ridiculous utterly ridiculous.

Cheerleader yes, she started most of this on the US side and we are all well aware of the story behind that.

I also went to Stanford in 2009 and still consider myself one of the lucky ones and there are many others who went that we have heard very little from since then so we just don't know.

I already know all the complications the lawsuits and the people involved and that's not worth mentioning.

That is not to detract from my personal experience since 2009. All that other stuff is none of my business if someone was wronged and they want recourse that's their legal right.

My own personal QOL since then has been incredible. Nuff said. No drugs, nothing, yet when I went to Stanford in August of 2009 I myself had zero expectations and I mean none. Hope yes Hope aplenty.
From that hot summer when my heat fatigue vanished along with cognitive dysfunction short term memory loss irregular balance and all that other stuff I have not looked back.

Now I understand the anecdotal nature of all this and I don't really care what I do care about however is these so-called studies in the shoddy way they are constructed in the first place.

The reason I know this is because of my involvement with dr. We see here locally and his method of treating ccsvi patient along with his results, and let me tell you at every step along the way he can pull out a short and indicate what that person's venous blood flow look like at that particular time.

What he discovered which I wish these idiots conducting these studies would utilize is that the majority narrowed veins are for the most part an anomaly. They are here one day and gone the next they are up they are down they are non-existent.

This is precisely where the studies falter because they are only treating One Moment In Time without any knowledge of what it looks like afterwards and a week later in the month later. So how do you know what is efficacious and what is not? You dont, and the reason is that person's system has altered and is now narrowed elsewhere compromising blood flow you just don't see it.

And therein lies the Crux when we establish 100% blood flow 100% of the time certain symptoms vanish and don't come back. If you have treat half the time and have no it documentation of the other times you're not really studying anything, you are just wasting money.

Again, we need to adjust break down all this silliness into some simple easy to understand Concepts:

1. Compromised blood flow especially out of the head through the veins, has a deletrious effect.
2. Reestablishing that blood flow is of Paramount importance, these studies obviously never looked at a hundred percent reestablishment of flow because they have no studies showing flow in the first place. DUH.

Now, at present there appears to be only one way we can guarantee establishing 100% blood flow and that is through stenting and lots of it. Period. Venoplasty alone has very limited capabilities. Restonsis being number one, and that restenosis can happen before they leave the hospital or within a period of months later or in a few cases maybe never we just don't know, yet what we do know for fact is that reestablishing blood flow with certainty yields good results nearly every single time. Since all of us Stanford stentees were stented, we are basically the consummate guinea pigs.

Okay so all that is side back to the original subject matter namely cheerleader and CeCe.

First of all us those of us that went to Stanford in 2009 went at our own behest nothing was promised ever and our expectations were low. Sure cheerleader and CeCe were copiously involved in this website, but they weren't the only ones pushing the ccsvi routine. We all did, heck still do.

This latest study is not the final nail in the ccsvi coffin because the people that make those pronouncements don't know a mother effing thing about it in the first place, not really. There is a very easy way to construct a study to fail from the start this one fits the bill, so no I don't think cheerleader and cece owe us anything.

Those of us that were successfully treated at Stanford who went there all on her own with no urgings whatsoever are thankful for what we received. I was given eight wonderful years of my life back at a quality never-before-seen after my initial Ms onset. Mark that one down for the record.

Now I don't personally know either cheerleader or cece, and they are certainly capable of Defending themselves, and believe me after the way that I got shafted by this stupid ccsvi Alliance nonprofits I have every reason to come in here and start throwing names around. As far as I am concerned wheelchair Kamikaze owes me an apology so does Mitch sturgeon. Along with a thank you for not dragging their precious Alliance charity through the mud earlier. That was purely out of respect for cheerleader. What happened was not her doing.

Now in the larger scheme of things it wasn't that big of a deal but to me personally it was earth-shattering and extremely hurtful., you give something or someone your all and they piss on it and then hand it back to you and ask you how you like it. This is why I have no trust for corporate hacks and or those in the corporate world.

Believe me if there's somebody that has a reason to be pissed off on this website it's me, yet I still defend when the defense is due.

Look mr. op I don't care how many years you've been puttering around this website cheerleader did nothing wrong except bring research to Stanford we are the ones that did the rest not her, so in that respect she owes you jack squat. She has nothing to apologize for, and in case you haven't noticed one lousy media article is not the death knell for ccsvi. Maybe in the future if these construct a real study the right way we'll end up with the right results and not the results they expected from the beginning.

This is the fight I described years and years ago of US versus this goddamn pharmaceutical industry, you don't just square up against the 30 billion dollar Juggernaut and expect to come out unscathed, thats how it works. Duh.

We will prevail in time because there is copious evidence on the connection between venous drainage and brain health, period, that can never go away it already exists.

No apology required my friend in fact I believe you owe an apology. Obviously cheerleader is migrated on to better digs over it Facebook that's her call maybe post over there see what happens

Very well written Mark, couldn't agree with you more.

Glenn

vesta wrote:Actually, that holds true for the DMDs as well, except they cost a fortune, require repeated MRIs and injurious lab tests and risk death. I think the placebo effect may well account for their "success".

This is why blinded studies are performed. Drugs such as tysabri had excellent results in clinical trials on relapsing remitting multiple sclerosis, and it would be difficult to know if you are on the drug or placebo in the trial. This helps to balance out the placebo effect.

A lot of drugs/procedures have good anecdotal evidence, but they don't pan out when subjected to proper scrutiny.

A great example would be coronary artery stenting in people with stable angina (see the COURAGE trial)

CureIous wrote:believe me after the way that I got shafted by this stupid ccsvi Alliance nonprofits I have every reason to come in here and start throwing names around. As far as I am concerned wheelchair Kamikaze owes me an apology so does Mitch sturgeon. Along with a thank you for not dragging their precious Alliance charity through the mud earlier.

Out of curiosity, what exactly are you referring to here? What is your beef with the CCSVI alliance, and how exactly did you get "shafted" by them?

centenarian100 wrote:

vesta wrote:Actually, that holds true for the DMDs as well, except they cost a fortune, require repeated MRIs and injurious lab tests and risk death. I think the placebo effect may well account for their "success".

This is why blinded studies are performed. Drugs such as tysabri had excellent results in clinical trials on relapsing remitting multiple sclerosis, and it would be difficult to know if you are on the drug or placebo in the trial. This helps to balance out the placebo effect.

A lot of drugs/procedures have good anecdotal evidence, but they don't pan out when subjected to proper scrutiny.

A great example would be coronary artery stenting in people with stable angina (see the COURAGE trial)

Your "proper scrutiny" applies to a "mechanical medical" treatment, a single drug or surgical intervention. But life doesn't work like that. Vitamins, for example, work in synergy with other vitamins. How do you isolate one substance to see if it "works" since it won't work on its own. Homeopathy is a highly effective treatment that can't be studied according to the drug model. Let's say 1,000 people have a bladder infection with the same germ. A competent homeopath will interview the person to decide on a remedy which will eliminate the germ by strengthening the immune response. No one remedy will work for everyone, the single drug model is inapplicable.
A personal experience. I was using "test strip urinalysis" to see if elevated leukocytes and nitrates indicated infection. One day symptoms coupled with the urinalysis indicated infection. I took Causticum which relieved symptoms. The next day the urinalysis was negative, no leukocytes or nitrates. That would be one way to test except ethical considérations might object.
What do you mean by "excellent results"? Would it be more accurate to say Tysabri had excellent results in reducing lesions? That doesn't necessarily mean excellent results in treating RRMS since some of those lesions may be signs of Healing and in the long run if one survives the Tysabri treatment, one hasn't necessarily treated the MS.

I have another idea that will take a disinterested MS researcher to study.

May 1980 my Neurologist at Kaiser San Francisco asked me to be examined before a classroom of MDs by a renowned British Neurologist Dr Christopher Pallis because my case was unusual. My right arm was completely paralyzed but I could still walk. Dr Pallis Drew a tube on the blackboard with a "bite" out of it and said that apparently only a section was touched (he didn't say spinal cord but that is what he meant.)
I now realize how I had saved my legs. I was keeping a daily journal at the time. I have recently compared that journal with my medical record. I now realize I stopped the attack with a Shiatsu massage at the Kabuki Hot Springs. After the massage I wrote that "I can't understand why on the one hand I feel so much better and on the other so much worse." I now understand. The massage stopped the attack by releasing the smooth muscle vein spasm to release the blood flow. However, my damaged nervous system went wild because of the heat. Once those symptoms subsided I began to recover which surprised my Neurologist because he thought I would need steroids. (MRI's weren't available then.)

Now, wouldn't it be preferable to stop an attack with a good massage that relieves a muscle spasm to release blood flow than to poison someone with steroids?

Why ignore that observation that is unique in the sense that I have the journal, I have the medical record, and I have the observation of a roomful of Doctors as well as a world renowned Neurologist. Dr Pallis struck me as an intelligent person (which is to say not close-minded) and it's too bad I didn't think to tell him what I had done to help myself.

Regards, Vesta

vesta wrote:Let's say 1,000 people have a bladder infection with the same germ. A competent homeopath will interview the person to decide on a remedy which will eliminate the germ by strengthening the immune response. No one remedy will work for everyone, the single drug model is inapplicable.

This would be relatively easy to test

You could just have the homeopath do an evaluation and make a recommendation. Afterwards, the patients with a UTI would be randomized to blindly receive either the recommended treatment or a placebo

What do you mean by "excellent results"? Would it be more accurate to say Tysabri had excellent results in reducing lesions? That doesn't necessarily mean excellent results in treating RRMS since some of those lesions may be signs of Healing and in the long run if one survives the Tysabri treatment, one hasn't necessarily treated the MS.

By "excellent results," I mean that patients treated with tysabri had fewer new or enlarging T2 lesions, fewer enhancing lesions, fewer clinical relapses, and less 3 month sustained disability progression compared to those treated with placebo

http://www.nejm.org/doi/full/10.1056/NE ... t=abstract

An individual patient doing well after receiving tysabri could easily be coincidental and would mean nothing, but the fact that the overall group receiving tysabri did better than the placebo group is good evidence for efficacy of the drug.

I now realize how I had saved my legs. I was keeping a daily journal at the time. I have recently compared that journal with my medical record. I now realize I stopped the attack with a Shiatsu massage at the Kabuki Hot Springs. After the massage I wrote that "I can't understand why on the one hand I feel so much better and on the other so much worse." I now understand. The massage stopped the attack by releasing the smooth muscle vein spasm to release the blood flow. However, my damaged nervous system went wild because of the heat. Once those symptoms subsided I began to recover which surprised my Neurologist because he thought I would need steroids. (MRI's weren't available then.)

This is pure speculation. MS relapses improve spontaneously all the time. Many people have several attacks which improve spontaneously before ever being diagnosed. It is well known that steroids do not necessarily change the ultimate recovery. In the optic neuritis treatment trial, people randomized to steroids recovered faster but had the same average long term outcome as those randomized to placebo.

centenarian100 wrote:This would be relatively easy to test

You could just have the homeopath do an evaluation and make a recommendation. Afterwards, the patients with a UTI would be randomized to blindly receive either the recommended treatment or a placebo

Aren't most homeopathic "treatments" really placebos in the first place? That would be testing placebo against placebo.

NHE wrote:Aren't most homeopathic "treatments" really placebos in the first place? That would be testing placebo against placebo.

You don't know for sure until you perform a well designed study. There is no need to prematurely disregard a treatment. It may end up unexpectedly proving you wrong. A good example would be antibiotics to treat gastric ulcers.

We could simply say that many homeopathic treatments are "unproven."

-c

centenarian100 wrote:

vesta wrote:Let's say 1,000 people have a bladder infection with the same germ. A competent homeopath will interview the person to decide on a remedy which will eliminate the germ by strengthening the immune response. No one remedy will work for everyone, the single drug model is inapplicable.

This would be relatively easy to test

You could just have the homeopath do an evaluation and make a recommendation. Afterwards, the patients with a UTI would be randomized to blindly receive either the recommended treatment or a placebo

What do you mean by "excellent results"? Would it be more accurate to say Tysabri had excellent results in reducing lesions? That doesn't necessarily mean excellent results in treating RRMS since some of those lesions may be signs of Healing and in the long run if one survives the Tysabri treatment, one hasn't necessarily treated the MS.

By "excellent results," I mean that patients treated with tysabri had fewer new or enlarging T2 lesions, fewer enhancing lesions, fewer clinical relapses, and less 3 month sustained disability progression compared to those treated with placebo

http://www.nejm.org/doi/full/10.1056/NE ... t=abstract

An individual patient doing well after receiving tysabri could easily be coincidental and would mean nothing, but the fact that the overall group receiving tysabri did better than the placebo group is good evidence for efficacy of the drug.

I now realize how I had saved my legs. I was keeping a daily journal at the time. I have recently compared that journal with my medical record. I now realize I stopped the attack with a Shiatsu massage at the Kabuki Hot Springs. After the massage I wrote that "I can't understand why on the one hand I feel so much better and on the other so much worse." I now understand. The massage stopped the attack by releasing the smooth muscle vein spasm to release the blood flow. However, my damaged nervous system went wild because of the heat. Once those symptoms subsided I began to recover which surprised my Neurologist because he thought I would need steroids. (MRI's weren't available then.)

This is pure speculation. MS relapses improve spontaneously all the time. Many people have several attacks which improve spontaneously before ever being diagnosed. It is well known that steroids do not necessarily change the ultimate recovery. In the optic neuritis treatment trial, people randomized to steroids recovered faster but had the same average long term outcome as those randomized to placebo.

A double-blind study to treat UTI’s would be welcome since Homeopathy is a very effective, non toxic treatment for that problem. A good practitioner of classical homeopathy “uniciste” in France (Homeopath who interviews the patient to choose a single remedy that corresponds to all the symptoms/patient characteristics) should be selected to determine the remedies. Remedies can’t be selected beforehand, they will be determined individually at the time of the illness. Then the control group would be given simple sugar pellets. (The person distributing the remedies should not be the Doctor since the placebo effect works for both Doctor and patient.) I have no doubt the treatment would be effective. However, UTI’s are not the ideal test pathology because one shouldn’t leave anyone untreated who has an UTI. Eczema and skin disease would probably be a better test choice so as to minimize danger to the testees. (Homeopathic remedies are very inexpensive. I just bought a tube of 80 pellets for $4. One week treatment. )

My own experience. I had long suffered UTI’s since my first sexual intercourse. I began Homeopathic treatment in 1989 at the age of 41. My Doctor urged me to treat a UTI with homeopathy, but I refused, I didn’t think it possible a sugar pellet could treat a bladder infection. Well, I finally relented and prepared to suffer in agony for several days. I called the Homeopath to describe in detail the symptoms. I began the remedy in the morning, by the evening the pain/urgency had diminished and by the next morning the infection was gone. (The remedy was Causticum at that time. Keep in mind that if the remedy is incorrect, it won’t work. A skilled Homeopath is necessary.)

It’s too bad there is such a prejudice against Homeopathy. Did you know that the AMA was created by Allopaths in the 19th century to destroy Homeopathy which was more effective than Allopathy at the time? The Allopaths eventually won because of the ease of Sulfa drugs, and then antibiotics in killing bacteria, but these won’t work against viruses. This AMA succeeded in closing schools of Homeopathy. This same AMA opposed public national health care insurance which is why the US has the most expensive and least effective system in insuring the health and well being of its citizens.

As to item number 2, Tysabri. (Natalizumab) All one can say about it is that it is effective in suppressing the immune response and lesions in patients, in other words, symptoms. That doesn’t mean it is effective in treating MS. Recently when someone stopped treatment they died from an EBV proliferation. Can suppressing the immune system really be advisable? Dr Ebers’ research indicates that relapses don’t prevent disability and have no bearing on the time to reach SPMS.

Item number 3. There is nothing ridiculous about my understanding of how the Shiatsu massage stopped my first MS attack. Scientific research begins with “pure speculation”. Then one tests the idea. So test my idea.
Actually, it is Dr Zamboni’s CCSVI theory and Dr Owiesy’s theory about a smooth muscle spasm in the brain’s draining veins which opened the door to my understanding of why that massage stopped the attack. It’s because it relaxed the smooth muscle spasm in the vein (probably Azygos) to allow free blood flow. Research increasingly confirms that blood flow through the brains of MS patients is slower than in “normals”. Why ignore that?

If a MS patient comes to the Neurologists office in full crisis, the Dr should have a masseur on hand to massage the neck and back of the patient. (Don’t wait, every minute counts.) That would be the humane, intelligent thing to do as starters. It can’t hurt and may help beyond anyone’s expectation. At least the attack could be stopped, then one can go on to torture the poor soul by puncturing their spine and inflicting whatever other punishment exists in the Doctor’s arsenal.

Who is going to do a scientific study to prove or disprove my theory? Not the drug company. No drugs to sell. Not the Neurologist. No money at the end of the rainbow, no status. Not a Massage society. No money for the study. Maybe a University Grad student could take an interest. Ideally the National Institute of Health should undertake the study. What are we paying taxes for if not to study effective treatments for disease? But the NIH has been captured by the drug companies. Marcia Angell who wrote in 2004 “The Truth About the Drug Companies: How They Deceive Us and What to do About It” has said that Drug companies invest only 7% of their budget in research, all the rest is for marketing. So much for their “boo hoo we sacrifice so much to help you” routine. They feed off research paid for by the taxpayer to create drugs that cost a fortune which are then unavailable to this same taxpayer.

Scott1 and Leonard have been running posts which suggest why the smooth muscles of veins go into spasms, though they don’t focus on that issue. I didn’t follow my diet correctly for 6 weeks and have had a setback. Why should that matter so much? Roger McDougall changed his diet in the 1950’s and freed himself forever from MS. Why should that matter? Scott1 goes into a long explanation I’m not equipped to discuss, but the final outcome of the sequence on inflammation at the cellular level causes calcium to leave the cells leading to muscle spasms/cramps. Let’s say that when McDougall stopped eating glutens etc., the smooth muscles of his veins stopped going into spasms, blood flowed freely again and that was the end of his MS. I completely healed by following an anti-inflammatory diet and relapsed when I stopped. Believe me, I hate denying myself the wonderful breads in France. But I like walking more.

Centenarian 100 seems to sneer individual solutions to MS treatment, believing that if it doesn’t work for everyone, it is ineffective. (“Belief” is the operative word here.) But what if in general MSers present a problem with blood/fluid circulation through the central nervous system for disparate reasons? If it’s a question of smooth muscle spasms in the draining veins, they come and go. If a bone spur blocks a vein, that’s a different story.

Current treatment that focuses on the immune response (this includes Steroids) aren’t treating MS, they aren’t dealing with the origin of the trauma which triggers the immune response.

Quote by Marcia Angell from 2009 New York Review of Books article (noted on Wikipedia)
“Similar conflicts of interest and biases exist in virtually every field of medicine, particularly those that rely heavily on drugs or devices. It is simply no longer possible to believe much of the clinical research that is published or to rely on the judgement of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine.”

Centenaria100's comment on "proof" is well taken. It would be more honest to say a treatment has not been studied rather than it has not been proven.

Regards, Vesta

centenarian100 wrote:

NHE wrote:Calling novantrone effective is stretching reality into "alternative facts."

It is effective, but the risks of the treatment (heart failure, leukemia, infection) are often greater than the benefit, so it is no longer used. The poor side effect profile has nothing to do with the efficacy of the treatment.

The 'alternative fact' treatment is great for explainig some people having unplanned side effects. I got a very nice heart attack from mitoxantrone (novantrone).

centenarian100 wrote:

CureIous wrote:believe me after the way that I got shafted by this stupid ccsvi Alliance nonprofits I have every reason to come in here and start throwing names around. As far as I am concerned wheelchair Kamikaze owes me an apology so does Mitch sturgeon. Along with a thank you for not dragging their precious Alliance charity through the mud earlier.

Out of curiosity, what exactly are you referring to here? What is your beef with the CCSVI alliance, and how exactly did you get "shafted" by them?

Lol, if the walls could talk. While I'm sure you would love to know, at this point, what is the point?

Let me just put it to you this way: not everything is as seems. Not everyone is as seems. Yeah, I guess I could just air all those dirty laundry and emails to satisfy your info lust, but at this point, it is irrelevant.

Let me be really really specific here: your attacks at CeCe and Cheerleader are unfounded. You will be very hard pressed to find ANYONE that went through with treatment in '09, that regrets it, and the ones you do find, I already know about, so just give it a rest, if myself with legitimate grievances (having to do with overall treatment), is saying to give it a rest, then there's little else to be said.

Probe away, you'll get little, and keep in mind, Joan Beal left this hodgepodge of internet musings long ago to make her own way on FB, this site was essentially abandoned. We are fighting over crumbs.

Just because I know XYZ PLUS the ABC, does not mean I will simply spout it out for your viewing pleasure.

Your bone to pick is different than mine, I'd prefer an apology myself, fat chance that happens, doesn't mean will torch the city on my way out. Got a little more class than that. But they know, and I know what they know, got the emails to prove it, and therein lies my place, that I know.

Just give it a rest dude, if anyone had a place to sue it was me, yet I didn't, and I won't, because very simply I am grateful for what I'd been given, 8 years of my life given to me. There is no price on such.

You are barking up the wrong tree for the wrong reasons.

Hello CureIous:
Just for clarification. It was bromley, not centenarian100, who denounced CCSVI and cece and cheerleader. I think C100 was simply curious.
Best regards, Vesta

centenarian100 wrote:

NHE wrote:Aren't most homeopathic "treatments" really placebos in the first place? That would be testing placebo against placebo.

You don't know for sure until you perform a well designed study. There is no need to prematurely disregard a treatment. It may end up unexpectedly proving you wrong. A good example would be antibiotics to treat gastric ulcers.

We could simply say that many homeopathic treatments are "unproven."

Some like to ponder the question, is the glass half empty or half full (though an engineer might say that the glass is twice as big as it needs to be)? Anyways, I ponder the question, is the empty glass truly empty or is it homeopathic? For example, an 8 oz. glass holds 236.588 mL. This volume, if water, contains 7.9x10²⁴ water molecules. If we do a 12C dilution of the water replacing it with nothing, then we are left with just 7 water molecules plus some change. Depending on the humidity, there are likely more water molecules in 8 oz. of air. So, the glass isn't empty, it's homeopathic water and those 7 water molecules are very potent.