CCSVI or not?

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

CCSVI or not?

Postby THX1138 » Mon Jul 15, 2013 12:55 pm

Does the following experience sound like CCSVI to you guys?

THX1138:
After the first time I went for a walk during a strong niacin flush (meaning a flush that goes all the way down to my toes), I started searching the net to find out why the flush transformed my walking and I found someone else who described a very similar experience:

At http://ms.about.com/b/2009/12/01/ccsvi-and-multiple-sclerosis.htm I found this:

(11) Hazel Young says:
Twenty-five years ago I was diagnosed with primary progressive MS. A year later I had all invisible signs of multiple sclerosis and I was walking with a cane. It often felt as if I were walking underwater. Going up and down stairs was almost impossible. In desperation, I began taking massive doses of vitamins. One of these was niacin.

Upon taking the niacin I would develop the “niacin flush” which would last for about twenty minutes. As I felt the blood rushing throughout my body, for that glorious twenty minutes, I would feel the MS lifting from my body. I would run up and down stairs, stairs I couldn‘t navigate five minutes before. I would grab my husband’s hand and we would walk around the block (yes, without my cane). We would put on our favourite record and dance like we hadn’t done in more than a year. Then the flush would disappear and the MS would take over my body once again.

No doctor has ever been able to explain why the niacin flush had this effect on me, but I always knew it had something to do with blood flow. As this niacin website states: “Niacin causes the capillaries in your body to get bigger…capillaries are the main way for your body to rid itself of toxins.”
http://www.mens-total-fitness.com/niacin-flush.html

When I watched Dr. Zamboni’s Liberation Treatment on television it finally felt like maybe there was a connection.
Last edited by THX1138 on Sat Mar 01, 2014 8:20 pm, edited 5 times in total.
THX1138
Family Elder
 
Posts: 439
Joined: Tue May 14, 2013 3:00 pm

Advertisement

Re: CCSVI or not?

Postby cheerleader » Tue Jul 16, 2013 8:11 am

Hi THX--
it's a bit more complicated than simply open capillaries and toxin removal---but it's related to the vascular theory of MS, and Dr. Zamboni's discovery of venous disease and hypoperfusion in CCSVI.

Niacin affects nitric oxide (NO) and the endothelium, creating vasodilation and regulating inflammation.
http://atvb.ahajournals.org/content/30/5/968.full.pdf

It might have temporarily helped this woman. The goal is to maintain endothelial health and restore perfusion and tight junctions---not just for 20 minutes, but for a lifetime.
http://www.ccsvi.org/index.php/helping- ... ial-health

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5029
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Re: CCSVI or not?

Postby THX1138 » Sat Mar 01, 2014 8:37 pm

I have to wonder what causes the vasoconstriction that the niacin flush temporarily relieves :?:
Let's ask ourselves: What causes vasoconstriction ?
Yes, the vasodilation (or is it the increase in Mg+2 ions) really improves things during the niacin flush. AND
Personally, I get similar, albeit much milder improvements in walking, etc. from strong topical Mg treatments.
Both cause vasorelaxation.
THX1138
Family Elder
 
Posts: 439
Joined: Tue May 14, 2013 3:00 pm

Re: CCSVI or not?

Postby THX1138 » Sat Mar 08, 2014 11:31 am

Does the following experience sound like CCSVI to you guys?

THX1138:
Quote:
After the first time I went for a walk during a strong niacin flush (meaning a flush that goes all the way down to my toes), I started searching the net to find out why the flush transformed my walking and I found someone else who described a very similar experience:

At http://ms.about.com/b/2009/12/01/ccsvi- ... erosis.htm I found this:

(11) Hazel Young says:
Twenty-five years ago I was diagnosed with primary progressive MS. A year later I had all invisible signs of multiple sclerosis and I was walking with a cane. It often felt as if I were walking underwater. Going up and down stairs was almost impossible. In desperation, I began taking massive doses of vitamins. One of these was niacin.

Upon taking the niacin I would develop the “niacin flush” which would last for about twenty minutes. As I felt the blood rushing throughout my body, for that glorious twenty minutes, I would feel the MS lifting from my body. I would run up and down stairs, stairs I couldn‘t navigate five minutes before. I would grab my husband’s hand and we would walk around the block (yes, without my cane). We would put on our favourite record and dance like we hadn’t done in more than a year. Then the flush would disappear and the MS would take over my body once again.

No doctor has ever been able to explain why the niacin flush had this effect on me, but I always knew it had something to do with blood flow. As this niacin website states: “Niacin causes the capillaries in your body to get bigger…capillaries are the main way for your body to rid itself of toxins.”
http://www.mens-total-fitness.com/niacin-flush.html

When I watched Dr. Zamboni’s Liberation Treatment on television it finally felt like maybe there was a connection.

I fixed the above link.
THX1138
Family Elder
 
Posts: 439
Joined: Tue May 14, 2013 3:00 pm

Re: CCSVI or not?

Postby Kronk » Sat Mar 08, 2014 11:56 am

I suppose this could explain the benefits of Prokarin the histamine patch for MS. Histamine widens the joins between the cells which line your smallest blood vessels, known as your capillaries. Although I would have some concerns with Histamine... there are 4 major histamine receptors and not all are good for MS. In fact pwMS have elevated levels of histamine in our CSF at an average of 60% more than healthy controls. Also when Histamine is combined with the coagulant thrombin it has been shown to open sustained holes in the endothelium. It's all very complex, levels of each vitamin and mineral would probably need to be set up individually. Whats also interesting with this is tryptophan is reduced in our CSF and it is required to make niacin.

Transient and Prolonged Increase in Endothelial Permeability Induced by Histamine and Thrombin
http://circres.ahajournals.org/content/83/11/1115.short

"...Your body uses tryptophan to make proteins, the B-vitamin niacin and the neurotransmitters serotonin and melatonin. However, in order to make niacin and serotonin, you also need to have sufficient iron, riboflavin and vitamin B6...."
http://chemistry.about.com/od/foodcooki ... -Facts.htm
Kronk
Family Elder
 
Posts: 248
Joined: Thu Dec 05, 2013 10:18 pm

Re: CCSVI or not?

Postby cheerleader » Mon Mar 10, 2014 1:00 pm

THX1138 wrote:I have to wonder what causes the vasoconstriction that the niacin flush temporarily relieves :?:
Let's ask ourselves: What causes vasoconstriction ?
Yes, the vasodilation (or is it the increase in Mg+2 ions) really improves things during the niacin flush. AND
Personally, I get similar, albeit much milder improvements in walking, etc. from strong topical Mg treatments.
Both cause vasorelaxation.


Hi THX---
You ask, what causes vasoconstriction? Simply, it caused by an lack of EDRF (endothelial derived relaxing factor, or nitric oxide (NO).
The discoverers of EDRF and nitric oxide won the Nobel prize in 1998, and they have changed medicine. http://circ.ahajournals.org/content/98/22/2365.full
Endothelial nitric oxide: Protector of a healthy mind
http://eurheartj.oxfordjournals.org/con ... 4.abstract

You mention that you find improvement by walking. Moving increases NO production.

The longer answer as to what causes vasoconstriction or lack of EDRF would be lack of shear stress due to inactivity, too many transfats and not enough whole foods causing inflammation, lack of fresh fruits and vegetables causing a lack of antioxidants and oxidative stress, lack of UV rays. All of these factors, and many more, deplete NO levels and can cause endothelial dysfunction, which will affect vasodilation and blood delivery to the body.

Low EDRF constricts blood vessels, raises inflammation, causes hypercoagulation (literally, blood becomes thicker due to slowed flow and increased proteins)----and all of this causes slowed blood delivery to the brain and other organs.

A niacin flush is one way to temporarily relieve a bit of this. But once the NO is out of the body, the effect is gone. A better way is to incorporate a holistic 24/7 lifestyle which uses whole foods, exercise, smoking cessation, meditation and stress reduction, UV rays, B12, zinc, mg, proteolytic enzymes like papain and bromelain---inflammation and coagulation numbers can be monitored by regular blood tests. So can B12, D and micronutrient numbers.

I know I sound like a broken record....but the info is all here, in pretty easy to read lay person English.
Online for free since 2008.
http://ccsvi.org/index.php/helping-myse ... ial-health

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5029
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Re: CCSVI or not?

Postby THX1138 » Tue Mar 11, 2014 4:34 pm

Thank you cheerleader.
And, no, you don't sound like a broken record at all.

Personally, I get similar, albeit much milder improvements in walking, etc. from strong topical Mg treatments.


cheerleader, do you think that a serious lack of just one, or just a few, of the components needed for endothelial health could cause ms symptoms :?:

Thanks
THX1138
THX1138
Family Elder
 
Posts: 439
Joined: Tue May 14, 2013 3:00 pm

Re: CCSVI or not?

Postby cheerleader » Tue Mar 11, 2014 8:52 pm

THX1138 wrote:
cheerleader, do you think that a serious lack of just one, or just a few, of the components needed for endothelial health could cause ms symptoms :?:

Thanks
THX1138


wow. I have no idea, THX. When I put together the program for Jeff, I looked at everything that was published (at that time-2008) and linked to endothelial dysfunction. The environmental factors that were linked to endothelial dysfunction included heavy metals, toxins, fats, glucose, smoking, inactivity, low B12, low D, cortisol/stress, obesity, viral and bacterial infections, lack of sleep, low UV rays. The approach we took with Jeff was to do as much as he could, in all the areas he could change. But he still gets stressed out, he still got shingles last year, we still breathe the air in LA.

The hope is that if you can change as many of the things you can change---by eating better, exercising, getting adequate vitamin D, and correcting venous malformations, etc---the endothelium can heal and nitric oxide can be balanced. But this is all hypothetical. I'm encouraged researchers are finally looking at the endothelium and MS.

Venous endothelial injury in central nervous system diseases
http://www.biomedcentral.com/1741-7015/11/219

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5029
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California


Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service