A Single Drop of Blood creates MS

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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sbr487
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Re: A Single Drop of Blood creates MS

Post by sbr487 » Fri Oct 23, 2015 10:46 pm

Joan and others,
I just cannot fathom the way Doctors think. Let me quote an example.
Auto Immune at the fundamental level has two parts (at least) - immune system itself and then the target organ in question. Every literature almost invariably mentions auto immune diseases as cases where our immune system has gone rogue. But inexplicably no one even mentions that probably immune system is just doing its work and it could be something in the given organ that is waking up the immune system. The traditional al approach also discounts to the fact that our system is way more sophisticated than just assuming that immune system went berserk.

currently I am being treated for hashimoto's hypothyroid and even here there are is some hypothesis that in case of hashimoto's, there are some changes in thyroid glad d and our immune system is actually trying to clean the up.

Sincerely I fail to understand why there is a lack of critical and disruptive thinking in medical research.
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck

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1eye
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Re: A Single Drop of Blood creates MS

Post by 1eye » Sun Oct 25, 2015 8:29 am

I think there is a serious problem that stands in the way, causing new knowledge to stagnate in the backwaters of proven revenue streams. The problem is not the patients. The problem is not the caregivers. The problem is not the volunteers, or even the badly paid care workers who are the frequent target of audits and re-examinations by politicians and bean-counters looking for low-hanging beans.

The problem is not the nurses or the GPs who are used to towing the line and doing what the specialists recommend.

The system, such as it is, is prey to corruption on a grand scale. Neurologists hold the keys to what are called "first line" and many of the other therapies. They have the signatures that can make insurance companies (state or private) pay or not pay the exorbitant prices for semi-permanent prescriptions of the drugs that are most often used.

They have been caught with their hands in the cookie jars, prescribing these drugs because the drugs' vendors paid them to do so. Bringing a whole lot of lawyers to bear, their reputations have had expensive walls built around them, sometimes even resorting to deleting the name-calling that has gone on in this very forum, changing written history in the process. Who did they threaten?

Kirsty Duncan, and others, are now in a position to put the power (such as it is) of the Canadian Federal Government to bear in the fight against the "Lords of Science" (Hunting the 1918 Flu:One Scientist's Search for a Killer Virus By Kirsty Duncan University of Toronto Press) and the big-money interests who control them. We must face it, this is one small battle in the war between the drug vendors and the drug consumers.
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cheerleader
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Re: A Single Drop of Blood creates MS

Post by cheerleader » Sun Oct 25, 2015 4:24 pm

sbr487 wrote: currently I am being treated for hashimoto's hypothyroid and even here there are is some hypothesis that in case of hashimoto's, there are some changes in thyroid glad d and our immune system is actually trying to clean the up.
Sincerely I fail to understand why there is a lack of critical and disruptive thinking in medical research.
Good question, sbr. I wonder, too!
Although researchers have been searching for the targets of the local immune response in MS for many years, the target antigens of the humoral immune response in MS are still unknown.
http://www.sciencedirect.com/science/ar ... 3910001195
And now that we know that a drop of blood is all in takes to activate the immune response---maybe more researchers will look at how the endothelial layer is functioning or not functioning, and how inflammation affects things like the thyroid gland.
http://www.researchgate.net/publication ... hyroiditis
http://www.ncbi.nlm.nih.gov/pubmed/23612675

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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ThisIsMA
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Re: A Single Drop of Blood creates MS

Post by ThisIsMA » Sun Oct 25, 2015 7:18 pm

Hi Cheer,

I read your "it only takes one drop of blood" blog post linked to in this thread. You included the following quote from the study:
This opens up the possibility for new types of therapies that target blood coagulation factors, upstream of autoimmune processes.
I'm wondering whether the reference to blood coagulation factors means that the researchers are theorizing that the blood in people with MS may be too thick? ...Or too thin?

Aspirin comes to mind when I think of blood thinners. I'm not asking anyone for medical advice, I'm just wondering theoretically.

And thank you so much for keeping us posted on the latest research!

M.A.
DX 6-09 RRMS, now SPMS

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cheerleader
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Re: A Single Drop of Blood creates MS

Post by cheerleader » Mon Oct 26, 2015 10:53 am

ThisIsMA wrote:Hi Cheer,

I read your "it only takes one drop of blood" blog post linked to in this thread. You included the following quote from the study:
This opens up the possibility for new types of therapies that target blood coagulation factors, upstream of autoimmune processes.
I'm wondering whether the reference to blood coagulation factors means that the researchers are theorizing that the blood in people with MS may be too thick? ...Or too thin?

Aspirin comes to mind when I think of blood thinners. I'm not asking anyone for medical advice, I'm just wondering theoretically.

And thank you so much for keeping us posted on the latest research!

M.A.
Hi MA--
The specific blood protein linked to this immune reaction by the Gladstone Lab research is fibrinogen. And the idea of the lab is to block this protein. Fibrinogen is a clotting protein found in all blood at varying levels, and it seems (at least to me) that blocking it systemically would be potentially diastrous---since the body wouldn't be able to form clots. Seems like a better idea to figure out why blood is breaking thru the blood brain barrier.

Jeff had hypercoagulated blood at his first flare---and I put together research showing how his blood factors looked like what we see in the coagulation cascade that is activated after ischemia. http://ccsviinms.blogspot.com/2014/03/b ... tters.html

The Endothelial Health program is meant to address this---it is about more than "thinning" hypercoagulated blood--as we can do with aspirin. It is healing the endothelial layer of blood vessels which is creating this hypercoaguable state. http://ccsvi.org/index.php/helping-myse ... ial-health

hope this makes sense. Blood matters.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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frodo
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Re: A Single Drop of Blood creates MS

Post by frodo » Wed Oct 28, 2015 2:15 pm

10yearsandstillkicken wrote:The writing is on the wall. As always, I'll keep on promoting the story to anyone that will listen. It is tiring though. Its seems so clear that there is something to this and there is ample research that should be getting Neurologists attention. Shouldn't scientific curiosity, at the very least, get their attention? It's not like they have another theory that fits the bill. It has not been proven over many decades of looking. It is frustrating and disheartening. Chalk it up to life isn't fair I guess...
I think our big mistake was to present the CCSVI research as a research for a cure, instead of showing it as a research about the etiology. MS attracts a lot of miracle sellers, and only because of that, the whole concept was dismished without further investigation.

Time will put it the theory back into its place, but it will be slow. We will need more articles as this one.

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Re: A Single Drop of Blood creates MS

Post by Cece » Wed Oct 28, 2015 6:29 pm

The mistakes were more theirs than ours, I think.

This new research shows that blood-brain barrier leakage can kick off demyelination and inflammation.
Inflammation itself can cause blood-brain barrier leakage. It's circular.

Hope everyone is well.

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10yearsandstillkicken
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Re: A Single Drop of Blood creates MS

Post by 10yearsandstillkicken » Thu Oct 29, 2015 11:11 am

I think our big mistake was to present the CCSVI research as a research for a cure, instead of showing it as a research about the etiology. MS attracts a lot of miracle sellers, and only because of that, the whole concept was dismissed without further investigation.

Time will put it the theory back into its place, but it will be slow. We will need more articles as this one.
Good observation. Seems inevitable this will lead to actual improvement in our lives. There is way to much smoke.

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Re: A Single Drop of Blood creates MS

Post by Rogan » Sun Nov 08, 2015 8:05 pm

A lot of people are affected by this disease, that is why folks make money on it. The market is not inherently evil.

Until we have a reasonable sentence that everyone can repeat it is theory.

My elevator speech goes like this.

Fluid flow to the brain is critical for neurological health. It can be disturbed through blockage. Blockage can occur from birth defects, things growing in your veins, pinched veins from muscles or bones. Also, they are finding that your bones settle on each other and aren't perfect. Also, they are finding that after destroying your arteries you get atherosclerosis of the brain. When either red or blue blood or CSF is not flowing well s…t happens. Bad s..t.

You need to fix your neck and fluid(s) flow. or You will have a neurological condition.

People sort of look at me, pause, and then mention something else they heard.

This is a bigger problem than doctors ripping off sick people.

Everyone needs to say the same theory, be on the same page, and figure this out. Please.

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Re: A Single Drop of Blood creates MS

Post by Bethr » Mon Nov 09, 2015 11:53 am

You need to fix your neck and fluid(s) flow. or You will have a neurological condition.
That sums up what I've been through in many respects. I had a golf ball sized cyst removed from my neck in 2012 and I've been pretty damn good since then. It did take a while to slowly heal though, more than 2 years. With the cyst in place I had a lack of oxygen at times which also raised my iron levels (I'm a hemochromatosis C282Y carrier), and high haemoglobin levels, and my blood was thick and I was really fatigued and developed brain lesions. Since my operation my iron levels and haemoglobin have normalised and I'm good to go now after three years of healing. The only thing that is still abnormal is my platelets sitting at 700,000. Drs. can't figure that one for now but I take daily aspirin, but have never had any clotting problems, and I am watched by a hemotologist, with blood tests every three months. Brain is fine :-D

So there could be many reasons for bad flow I'm reckoning.

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cheerleader
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Re: A Single Drop of Blood creates MS

Post by cheerleader » Tue Nov 24, 2015 5:33 pm

No one on this site ever said repairing CCSVI was a cure, Frodo---we've always stated that it was about aetiology and understanding blood flow and brain health. Sadly, the word cure was used by the media in Canada, and people with MS latched onto that. But the first 40 Stanford patients who met on this site and were treated in 2009 (before the CTV program) knew that this was in no way a cure.

Read the original thread from December 2008, where in the first post I said,
Zamboni and his team have stumbled upon something, and it appears a new light is shining on MS research.
This has brought me renewed hope, and I thank Dignan for digging it up and sharing it with us.
http://www.thisisms.com/forum/chronic-c ... c6488.html

Blood, CSF and lymph all flow through the neck. Understanding how any impedence to flow can affect the brain is essential.
Agree with Rogan, Bethr, Cece---we'll get there.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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