restenosis...

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

Postby Donnchadh » Sat Apr 23, 2011 6:52 pm

leetz wrote:donchadh...you can tell us you know...just what u take or pm us and let us know that has nothing to do with Karma? it is just what works for you...


check your PM's

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Postby fogdweller » Sun Apr 24, 2011 11:01 am

Donnchadh wrote:
fogdweller wrote:
Donnchadh wrote:Long before I ever heard of CCSVI, I found out that donating whole blood really helped with fatigue-why I don't know. Just that I felt better.

Same with many other supplements; a wide range of results.



I am not sure why whole blood donation might help. Supplements might make sense, some chelation going on. What supplements? I promise not to hurt myself.


By donating a pint of whole blood, the body is forced to draw down iron stores to start the process of creating replacement red blood cells. At the "heart" of hemoglobin is iron. That's why red blood cells can transport oxygen to the body; iron captures and releases it.

Donnchadh


I understand, of course, that hemolobin would use iron as a main constituent, and that after giving blood you would need to reconstitute your red blood cells, i.e. hemoglobin. It just would not be made using free iron deposits in the brain.

Those free iron deposits are not readily available to the quantity of blood flow necessary, are not in the form that is used to generate hemoglobin for cells, and the red blood cells are made in the bone marrow, not the brain. Donating blood may make you feel better for some other reason Blood pressure? Temperature and metabllc effects that are positive?Who knows but if it works it is all good. It is just very unlikely that reduction of iron deposits is involved.
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Postby Cece » Sun Apr 24, 2011 12:30 pm

In Zamboni's theory, it's not free iron deposits in the brain that is the main culprit, is it? It is red blood cells that get through the leaky endothelium. These break down into hemosiderin.

I am personally partial to what was presented at ISNVD on the hypoxia of axons early in the course of MS, thus making direct hypoxia a means of damaging the brain, not the iron deposits. Although maybe the iron deposits lead to the lesions, while the direct hypoxia leads to the NAWM with damaged axons underneath.
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Postby blossom » Sun Apr 24, 2011 12:34 pm

have you ever read on hemochromatosis. it's very enteresting. one of the least tested for things and they feel could be one of the biggest things causing bad health.

the standards are set as with other things on like how high or too low things should be to be considered a safe level. but as with many of us what if that standard is off some for each and every individual and what seems normal might just not be on target for me or you?

at any rate the treatment to get the iron deposits out of the organs like the liver, heart or pancreas is blood letting. ironically the chinese medicine pays a lot of attention too the heart and liver when it comes to treating ms. also, from some post on tims there are thoughts that insulin plays a part in this so thus there's the pancreas involved.

but regardless of what the iron deposits are effecting say like the "nervous system or the iron deposits that dr.haacke looks at" it seems the safest and best way to get it out is blood letting. hopefully before permanent damage is done. "and it's cheap"

there again, a relatively safe treatment, that could be the answer for many, that mainstream gives the famous look we all know too well when i have tried to get bloodletting done. i'd like to be monitored as it should be but it does drive one to try other means if possible when in the shape i'm in.

then, i just get p---ed off at the whole thing of what's the harm when there is a real possibility of gain. the doc's have no problem in shoving drugs in our face that have proven harm with little gain.
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Postby fogdweller » Sun Apr 24, 2011 2:57 pm

Cece wrote:In Zamboni's theory, it's not free iron deposits in the brain that is the main culprit, is it? It is red blood cells that get through the leaky endothelium. These break down into hemosiderin.

I am personally partial to what was presented at ISNVD on the hypoxia of axons early in the course of MS, thus making direct hypoxia a means of damaging the brain, not the iron deposits. Although maybe the iron deposits lead to the lesions, while the direct hypoxia leads to the NAWM with damaged axons underneath.


Personally, I suspect a complex combination. The breakdown of the bloodbrain barrier may lead to hemosiderin being released into the brain, which would be prevented if the BBB was intact. Is this different than the iron that is detected by Zamboni in the brain? Iron deposits could interfere with the complex interactions goining on in the brain and led to a number of problems that would sound like MS symptoms.

Hypoxia would damage the nerve cells and the reflux of blood int tthe area accross the dura where there would normally be no whole blood would be a inflammatory agent. All these things happening over long periods of time would errode the tissue (plaques in the brain, lesions in the legs and perifery. It all makes sense.) Exactly what does what and if just opening up the cerebral veins will solve the problem is where we are in our investigatgions right now.

JMHO
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Postby zanne10000 » Sun Apr 24, 2011 3:56 pm

Blossom, I love that someone finally mentioned hemochromatosis! I had never heard of it until I had to come off of Avonex after only 3 months. My liver enzymes were 10x normal and I was sent to a GI specialist. He tested me for everything, including this. Finally, after about 6 weeks had passed since I had stopped Avonex, my levels finally started to drop and he concluded that he could safely say it was the drug that caused such chaos in my liver. I was so relieved because he was about to order a liver biopsy!

I didn't test positive for hemochromatosis, but you can bet I did a lot of reading on it when I was waiting for my results.

Donnchadh, I love your theory. I always tend to be a bit high on iron, but interestingly, in my Haacke report, I didn't have any iron deposition in my brain. So... where does this leave me? I'm not sure, but this was a very interesting thread for me. Glad everyone is on top of it! Don't know if I could give blood anymore, since I've taken Copaxone, Avonex and Tysabri, but I used to give blood regularly (before I was diagnosed with MS-- maybe that's one way to ward off the onset?!).

:?:
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Postby Donnchadh » Sun Apr 24, 2011 4:38 pm

zanne10000 wrote:Blossom, I love that someone finally mentioned hemochromatosis! I had never heard of it until I had to come off of Avonex after only 3 months. My liver enzymes were 10x normal and I was sent to a GI specialist. He tested me for everything, including this. Finally, after about 6 weeks had passed since I had stopped Avonex, my levels finally started to drop and he concluded that he could safely say it was the drug that caused such chaos in my liver. I was so relieved because he was about to order a liver biopsy!

I didn't test positive for hemochromatosis, but you can bet I did a lot of reading on it when I was waiting for my results.

Donnchadh, I love your theory. I always tend to be a bit high on iron, but interestingly, in my Haacke report, I didn't have any iron deposition in my brain. So... where does this leave me? I'm not sure, but this was a very interesting thread for me. Glad everyone is on top of it! Don't know if I could give blood anymore, since I've taken Copaxone, Avonex and Tysabri, but I used to give blood regularly (before I was diagnosed with MS-- maybe that's one way to ward off the onset?!).

:?:


You wouldn't be eligible at the blood bank I go to because of the "MS" autoimmune drugs you took, however your doctor can make an order for a blood draw. You would have to pay for it.

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Postby blossom » Sun Apr 24, 2011 6:29 pm

zanne, could i ask, what are your symptoms? like me i have no brain lesions i have 1 lesion on the cervical. my body from the neck down is getting pretty well shot but so far ears eyes brain fog headaches etc. not a real issue. are you cnsidered rrms ppms? seems a lot of ppms especially have less or no brain lesions. but the spinal lesions are there. did haackee check if you have them spinal lesions?

my thoughts are leaning towards whether it is an injury or born that way if for any reason you have bad flow iron could possibly build up there and attract bacteria virus or just plain add insult to injury with the nervous system. like wherever there are flow problems iron shows up say for instance vericose leg veins.

then to add insult to injury for those that has hughe's syndrom or mthfr which makes your blood thicker or stickier. most peopler are not checked for this.

again, these treatments are cheap and might be the ticket for some and a piiece of the puzzle for all---but maybe that's the problem -- it's too cheap.

combine chiropractics, hyperberic chambers, blood letting and ccsvi altogether for a yr. and it will not reach the cost of a drug like tysabri.

and have the real possibility of fixing things. hmmmmmmmmmmmm!!









r
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Postby zanne10000 » Sun Apr 24, 2011 7:14 pm

Hi Blossom:

I went to the Hubbard Foundation and they did the brain and functional MRIs (this is where Dr. Haacke comes in- his team analyzes all the data to determine the flow rates, etc.). I don't think I've ever had a scan of my neck. One doc said I would have it done the next time I came in (but I had fired her by then, ha!, so there was no next time) and my current doc never orders it. I should ask her, but I might be firing her, too, so maybe the next one...

My symptoms are mostly sensory and I'm RRMS still, as far as I know. I've had optic neuritis a bunch of times, numbness, altered sensation in my legs, stabbing pains in hands/feet, bladder problems, get easily "overwhelmed" by too much input (tv on, child screaming, husband talking, all at once, etc.).

I did post about the no iron findings on the CCSVI group I'm part of and someone replied that they didn't have any either. I think that what they've found so far, at least at Hubbard's is that some do and some don't. I'm thinking that CCSVI is its own condition which some people have and some don't and if you do, as I did, then it definitely doesn't help your MS issues!
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Postby blossom » Sun Apr 24, 2011 7:47 pm

zannee, if i were you i'd sure want someone looking at my cervical and spine. not trying to persuade only suggest that. have you been following dr. flanagan--uprightdoc here at tims? did you get treated or tested?
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Postby zanne10000 » Sun Apr 24, 2011 8:10 pm

Hi Blossom:

Yes, sorry I forgot to add that I'm a seeing a NUCCA doc too. I'm trying to be gluten-free as well, so I thought I'd try a more natural approach for a while and get off Tysabri. We'll see how things go in September at my next MRI.

Does Dr. Flanagan have his own forum here? I see him post comments now and then, but not in one specific place. Thanks!
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Postby blossom » Mon Apr 25, 2011 6:54 pm

yes he does---ccsvi and ccvbp-----uprightdoc
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