Lesions and SWI

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

Postby SammyJo » Thu Oct 08, 2009 3:33 pm

[Iron] not don't mess about with adding it or denying it


Thanks Marie, I switched to a cast iron skillet years ago to avoid teflon, I was wondering if I went from the frying pan to the fire! Glad I don't have to throw out the cast FE.
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Postby CureIous » Thu Oct 08, 2009 4:26 pm

mrhodes40 wrote:My take on it is that you should not alter iron intake. The iron is in your blood. Fact. You could not get oxygen to your tissues if it was not there. Iron forms hemoglobin and that is what carries oxygen around in your body. All red blood cells have iron on them in the form of hemoglobin.

CCSVI results in a leaking of red cells into the brain parenchyma. As long as red blood cells leak there will be some iron getting in where it does not belong.

Reducing iron may help the issue as rat studies on EAE showed that iron deficient mice did better. BUT MS is NOT EAE. it never was and never will be, and if MS is CCSVI it is even more different than we thought than EAE. Not even autoimmune proponents at this point in time is recommending keeping people anemic to address MS.

SO my personal thought on that is that if your doctor thinks you are anemic and need iron, then take it. If not don't mess about with adding it or denying it. Iron overload can be a problem, and anemia can be a problem. Iron is not like, say, a b-vitimain that just goes out in the urine if you get too much. It accumulates. Minerals like that should be monitored and supplemented only if the need is there, not just based on how a person thinks they feel.

If the CCSVI model is correct, being iron deficient is not likely going to help because blood will still leak and it will still have some iron in it...and SWI will continue to detect it........... :wink:



See, now where else on the net could we go to get such a concise explanation like this? This is why I think SWI studies are so important at this stage. Such a diff. between our blood levels +/- and this accumulation in the brain. Is it possible that after the "leak is plugged" that the accumulation could dissipate over time? This is a real conundrum to consider, as if this modality holds true, it's like the blood is a highway with a bunch of cement trucks dumping their excess in a pile, close the highway and the pile is still there. A one way street. I would think you are correct, as shutting down the leak isn't going to fix that pile of iron.

To think of that built up iron just sitting there like a lump with nowhere to go makes my head hurt.

The body does so well at fixing itself, that hopefully it will self-correct the imbalance.

Or in the least, that it will learn to negate and ignore the effects, then the immune system can chill out and stop freaking.

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby CureIous » Thu Oct 08, 2009 4:30 pm

SammyJo wrote:
[Iron] not don't mess about with adding it or denying it


Thanks Marie, I switched to a cast iron skillet years ago to avoid teflon, I was wondering if I went from the frying pan to the fire! Glad I don't have to throw out the cast FE.


Grandma had a lot of wisdom in that cast iron skillet... I shudder to see all that flaky teflon in the pan. Yuck. She wouldn't be caught dead using teflon pans. Course bacon and eggs every morning cancels out the bennies from no teflon! lol. Tofu omelettes at my house!
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby jimmylegs » Fri Nov 06, 2009 6:25 am

as posted elsewhere, i agree strongly with marie that it is not wise to go along with iron deficiency anemia for fear of overload.

there *is* a happy medium.

and you can help your body use iron properly by optimizing your zinc level - which, if you have ms, is probably low.

low zinc can cause an array of effects including:

-loss of membrane integrity, including the intestinal wall (leaky gut) and the blood brain barrier,
-reduced benefit of vitamin A to the eyes,
-poorer anti-inflammatory vitamin d3 absorption,
-lower uric acid (meaning poor antioxidant status), *and*
-iron dysregulation/deposition.

JL
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Postby shye » Fri Dec 04, 2009 5:46 pm

what about concentrating on the Blood brain barrier? Maybe that is the problem--if that is defective, iron and much else is getting into the brain.
I'll start a new thread for this, but at the moment, have not done any research; just thougt of this as I finished reading this incredibly informative thread. Thanks everyone here
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Postby cheerleader » Fri Dec 04, 2009 6:47 pm

Glad this thread got bumped, shye. Had a great conversation with Dr. Haacke today...he is on fire and ready to go. More sites around the world are joining his NICE protocol, and he just got back from a European jaunt, signing up more centers. He calls this a world-wide emergency, and wants to move quickly, to help MS patients now.

He was inundated by patient calls- 10,000 in one week, but understands the urgency. Here's the latest from his site:

Thank you very much for contacting us and for your offers to support this research. We have tried to answer each of you individually but this will take time because of the thousands of people who have responded. Due to the high call volume, we request that you please review the information below and contact us only using info.mrimaging@gmail.com.
Many sites are in the process of getting approval from the institutional review board (IRB) also known as an independent ethics committee (IEC) or research ethics board (REB). These are committees that have been formally designated to approve, monitor, and review biomedical and behavioral research involving humans with the aim to protect the rights and welfare of the research subjects. The protocol to study MS patients for the CCSVI and SWI connection is under review. Please check into the website after Christmas and we will post the status of our proposal. We cannot solicit patients for research until such approvals are obtained. Please do not send us any data at this time. It takes a special set of MR sequences to investigate the vessels in the head and neck. It is important to realize that there is a lot work to be done to test Zamboni’s hypothesis and that if we do it carefully it will benefit everyone far more than rushing into it unprepared. Finally, please be patient as the scientific approach must take its course for the benefit and protection of all concerned.


as far as blood brain barrier and CCSVI, use the search function, shye. Lots of good talk about shear stress and endothelial dysfunction.
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ozarkcanoer » Fri Dec 04, 2009 7:52 pm

cheer... I'm glad to see Dr Haacke so pumped up !! My appointment with him in Detroit for next Monday December 7 was postponed with no new date. The nurse coordinator told me I would get the scan, but she had no idea when my new date would be. I am really bummed out, but I know Dr Haacke is very busy and I will bide my time. It's so hard to wait when I am in such pain. But I will be patient and thankful that Dr Zamboni and Dr Haacke and Buffalo and Dr Dake will prevail !!
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Postby Johnson » Fri Dec 04, 2009 7:55 pm

I was going to mention the shear stress and endothelium, as cheer did, but something has been on my mind concerning the BBB, iron (and chelation of same), fibrin cuffs, etc.

I have been meaning to do a separate post on it, but I'll touch on it now;

I have been thinking that the fibrin cuffs around offended veins may act like "scabs", and that even the iron deposits may protect against further iron deposition, being themselves a buffer (thinking of osmosis and saturation). I have been thinking of doing iron chelation, but if there is not a route out for the blood from the brain, we might chelate from other areas, putting a further load into the brain. I would think that we would not want to mess too much with the dynamics, lest we fan the flames.

Further, I have been doing very high doses of anti-fibrin enzymes (nattokinase, serrapinase, bromelain, etc.) for another issue, and I am sure that my latest exacerbation started a few months after I started that therapy, and has been constant for the last 6 month ie: no usual remission. It has had me worried that I may be going Secondary Progressive, which is why I decided to see Dr. Simka for surgery. But, I digress. I have been wondering if the enzymes are breaking down the fibrin cuffs (scabs), and making the lesions active again.

That's it for now, my brain is freezing.
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Postby mrhodes40 » Fri Dec 04, 2009 8:39 pm

worldwide emergency


I LOVE that
:D :D :D :D :D :D :D
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Shannon » Fri Dec 04, 2009 9:23 pm

I am certain that whatever has damaged my c-spine is now endlessly "crackling" when I turn my head. It happens all the time, like crumbling cellophone. I told my neuro and he laughed and told me that it was normal for the neck to crack a lot when you move it, and that it was likely because I was holding my head a certain way a lot. I know my own body, and this is definately coming directly from the area of the spine in my neck where the lesions are. It started about a year ago, I think, and I'd love to know what the heck it is. Does anyone else have this?
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Postby Johnson » Fri Dec 04, 2009 9:34 pm

Shannon wrote:I am certain that whatever has damaged my c-spine is now endlessly "crackling" when I turn my head. It happens all the time, like crumbling cellophone. I told my neuro and he laughed and told me that it was normal for the neck to crack a lot when you move it, and that it was likely because I was holding my head a certain way a lot. I know my own body, and this is definately coming directly from the area of the spine in my neck where the lesions are. It started about a year ago, I think, and I'd love to know what the heck it is. Does anyone else have this?


Yes! And sometimes my neck locks in certain positions, and I have to very carefully find the path my head took to that position, and follow it back, else I can become mechanically locked. I woke up once when I was about 25, and my neck was locked such that my chin was stuck to my left shoulder.. The chiro always says that it is C2, C3, and sometimes my lumbar too.

There is a video on Youtube about MS and C2, or such. This fellow claims to have healed from MS. (Maybe before his C2 totally mangled the VJV?)
If you enter it into the search function on Youtube, you will get the vid.

TMJ, wisdom teeth, cervical spine, jugular drainage...
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Postby cheerleader » Fri Dec 04, 2009 9:57 pm

This is going to seem unbelievably nit picky, but if we could please keep threads on topic. There is so much information flying around on CCSVI, it would be great to keep this thread on Dr. Haacke, SWI, iron, etc.

Johnson and Shannon: Here's a thread on cervical neck issues and CCSVI:
http://www.thisisms.com/ftopict-8053-neck.html+ccsvi


Dr. Haacke has a new site up with centers that will be participating in his NICE testing. I'm glad to see one in Loma Linda, CA. Maybe we can get Jeff down there.
Here's the new site:
http://www.nice-mri.com/
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Shannon » Fri Dec 04, 2009 10:25 pm

Sorry. I thought I was being on topic. I'm mainly wondering what kind of iron build up or calcification may be going on. It isn't really locking, or pain or anything like that. It's simply a "crackling" sound right there where the lesions are known to be. I've wondered for some time what the heck it was, so i thought this new information about the iron and the actual damage that we've endured may offer an explanation to that. I've read the other thread, but what i have is not exactly a neck "problem." I'm hopeful that perhaps someday there will be a "clean up" process and the lesions or iron deposits will be gone. :D
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Postby Johnson » Fri Dec 04, 2009 10:31 pm

cheerleader wrote:This is going to seem unbelievably nit picky, but if we could please keep threads on topic.




Actually, I was completely on the topic of lesions - that's what the fibrin cuffs around the veins are, y'know.
Last edited by Johnson on Mon Dec 07, 2009 5:45 pm, edited 1 time in total.
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Postby CureIous » Fri Dec 04, 2009 10:36 pm

Cheer or anyone, do we have some kind of basis for cost for SWI? I thought I read somewhere that it's fairly easy and short to obtain, which of course time in the tube always translates into $$. I don't think my insurance will cover another MRI, experimental or not, but would still be interested in finding out roughly how many k's we are looking at for this. I would love to get a baseline going on this asap for future reference since I quit the drugs, well before the surgery anyways.

Thanks if anyone has an inkling... Mark. Be happy to edit this post to nothing if someone has a thought on the $$ part...
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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