Phlebotomy anyone?

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

Postby Johnson » Fri Feb 05, 2010 11:08 pm

Merlyn wrote:
http://www.healthcentral.com/multiple-s ... 53/leeches
...

Proteomics, a new age genome based analysis of proteins, has helped to identify proteins involved in many diseases including cancer and MS. This helped Dr. Han to determine that MS patients with MRI visualized chronic active plaques in the brain (i.e. those hotly inflamed and often related to ongoing signs and symptoms) were the plaques that showed several proteins involved in coagulation (clotting). What a fascinating new area of MS research and quite a different pathway of disease pathogenesis than that usually pursued in attempts to decipher the mystery of MS!
...


What I wonder (not that what I wonder is of any great significance...): I have supposed that the plaques are a protective mechanism - as opposed to a reactive mechanism... Are the coagulation proteins artifact to an attempt to close the breech in the BBB?
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Advertisement

Postby Merlyn » Sat Feb 06, 2010 1:46 pm

I read one time that the lesions in the brain are simply calcium, that the body lays down calcium in response to inflammation... lesions are found in so many conditions, and the fact that they could not relate sized/number/location to disability makes me wonder what they mean at all... I had hundreds of pinpoint lesions, and I have yet to find anybody else that is saying that... I did not repeat my MRIs because it seemed to screw me up royally, something that I don't hear a lot of people saying either.

I do know that if you do research on hypercoagulation and multiple sclerosis, you come up with lots of studies... but no real explanation as to what causes it. High levels of fibrin yes, but no explanation for why the high levels. I actually did a antiphospholipid antibodies test for Hughes syndrome, which came back negative. I don't feel better on aspirin, but for some reason Advil makes me feel better in more ways than one. Aspirin is cleared through the glycination pathway of the liver, and I tested very very low in glycine... one of the components of glutathione, which is decreased by iron overload as it turns out. I tested very low in glutathione, I was nebulizing it! Hoping that it would get iron out of the brain... I have read more than once that phlebotomy will not do that... but I have not noticed any particular reaction one way or the other to nebulizing glutathione, but maybe I would not if the body burden is extremely high... maybe one can reduce iron levels for phlebotomy and then go after the brain... who knows?

I am wondering if it is iron loading from a young age that causes the accumulation of all the other metals that get out of whack... I found it very interesting when Dr. Terry Wahls did one of these tests and came up with all of the toxicity of A Humanoid Cannibal Underground Dweller

http://terrywahls.blogspot.com/
however I did expect that I'd have some evidence of heavy metals, just because I have come to recognize that heavy metals in the body are often drivers of autoimmune diseases, including multiple sclerosis. I've been taking additional iodine for three months, again to help support my iodine intake.

I took the test through the FFP laboratory (J. D. Flechas, MD) because I wanted to get a status on my iodine and heavy metals. I just go my results and I was surprised.

Here they are
Flouride: normal range
Iodine: provocation 78% when the goal is 90% so iodine stores are low - I probably need another 3 to 6 months of replacement iodine to get my iodine levels in the fully replaced range)
Bromide spot low - but provocation was 38 (3X normal) - which means I have bromide in my body. Bromide competes with iodine, driving up the amount of iodine I need. Bromine will be excreted via urine. But I need a lot of iodine to do so.


Other heavy metals that were toxic
aluminum 2X normal
Barium 20X normal
cadmium slight elevation
cesium 2 X normla
Gadolinium 100 X normal
rubidium slight elevation
thalium 10X normal
tungsten slight elevation
Uraniaum 2 X normal
mercury slight elevation

The big questions --
Where did I get these compounds? \
Am I still taking more into my body?
How do I increase my ability to get rid of them?
Notably, I probably had much higher levels two years ago.
Since cruciferous, onions and sulfur amino acids induce more enzymes that are used in detoxification -- I have been following a good detox protocol.
But now I want to do even more..
I went out looking for more information on detoxification and came across this site.
I found it useful.
http://www.radiationdetox.com/ebook/070 ... nDetox.pdf

Other sources of information include Dr. Mark Hyman who has several books. Going to his website would provide some information as well.
http://www.drhyman.com/


More information can be found about iodine at
http://www.iodine4health.com/ortho/flechas_ortho.htm
Sources for my heavy metals were probably related to growing up on an Iowa farm, living in communities that used treated river water and living in a home with a shallow well.
Now I have a reverse osmosis water filter. I take a sauna most days, and a clay foot soak. And I take chlorella, spirulina and green tea each day in my morning smoothie.

For those of you with an autoimmune disease, consider the possibility that heavy metals in your fat and brain are adding to your disease.


I have always been amazed at how toxic people with multiple sclerosis are... I am suspecting now that it is due to the fact that we accumulate iron, which then causes further accumulation of other metals...

http://www.consumerhealth.org/articles/display.cfm?ID=19990303204921

EXCESS IRON INCREASES OTHER METALS Excess iron can cause other metals such as copper, calcium and manganese to accumulate in the body by binding with them, and they become deposited in the wrong places and cause harm. Copper is notorious in this respect, especially if the liver is compromised. Manganese can also accumulate in the liver and brain. Calcium can build up in the arteries - this can be removed by deferoxamine and EDTA. Many women with breast cancer have calcium deposits in their breasts and only chelation can remove it (Anticancer Research, 1994). Copper tends to antagonize other minerals like zinc, manganese, vitamin B6 and molybdenum.


I do not think doctors in general, especially the allopathic type, understand nutrition or heavy metal toxicity. Besides the fact that Zamboni says he does not have good results with Primary Progressive, I still want to know why people develop MS in the first place... I think it is due to abnormal metal metabolism, but the whole focus on the iron being the instigator is making more and more sense... I have never bought into the autoimmunity theory, unless they take into account that abnormal metal levels bring on the autoimmunity...
User avatar
Merlyn
Family Elder
 
Posts: 574
Joined: Sun Nov 29, 2009 4:00 pm

Postby Merlyn » Sat Feb 06, 2010 2:28 pm

This is a term that is used with hemochromatosis... jugular venous distention... maybe the veins in the neck are all twisted due to heart problems due to hemochromatosis? I have to do more research on what jugular venous distention, anybody else ever heard this term?

http://enotes.tripod.com/hemachromatosis.htm

Physical Exam:
Skin hyperpigmentation - Usually a late finding ; Skin stigmata of chronic liver disease, e.g., spider nevi, palmar erythema, jaundice (in cirrhosis)
Signs of liver cirrhosis - Ascites, splenomegaly, asterixis
Signs of cardiac arrhythmia or congestive heart failure - Irregular heart beat, cardiac gallops, jugular venous distension, pulmonary rales
Testicular atrophy - Typically secondary hypogonadism from iron deposition in pituitary
Degenerative joint changes, especially of the metacarpophalangeal joints; Other joints involved may include hips, knees, feet, and shoulders
User avatar
Merlyn
Family Elder
 
Posts: 574
Joined: Sun Nov 29, 2009 4:00 pm

Postby shye » Sat Feb 06, 2010 6:27 pm

I think it is worth looking at Zamboni's paper on iron deposition again:

Ajay Vikram Singh1 and Paolo Zamboni2

1Department of Physics, European School of Molecular Medicine (SEMM), IFOM-IEO Campus, Centro Interdisciplinare Materiali e Interfacce Nanostrutturati (CIMAINA), University of Milan, Milan, Italy
2Vascular Diseases Center, University of Ferrara, Ferrara, Italy
Correspondence: Professor P Zamboni, Director Vascular Diseases Center, University of Ferrara, Milan, Italy. E-mail: zmp@unife.it

Received 27 April 2009; Revised 27 July 2009; Accepted 29 July 2009; Published online 2 September 2009.

Abstract
Multiple sclerosis (MS) is primarily an autoimmune disorder of unknown origin. This review focuses iron overload and oxidative stress as surrounding cause that leads to immunomodulation in chronic MS. Iron overload has been demonstrated in MS lesions, as a feature common with other neurodegenerative disorders. However, the recent description of chronic cerebrospinal venous insufficiency (CCSVI) associated to MS, with significant anomalies in cerebral venous outflow hemodynamics, permit to propose a parallel with chronic venous disorders (CVDs) in the mechanism of iron deposition. Abnormal cerebral venous reflux is peculiar to MS, and was not found in a miscellaneous of patients affected by other neurodegenerative disorders characterized by iron stores, such as Parkinson's, Alzheimer's, amyotrophic lateral sclerosis. Several recently published studies support the hypothesis that MS progresses along the venous vasculature. The peculiarity of CCSVI-related cerebral venous blood flow disturbances, together with the histology of the perivenous spaces and recent findings from advanced magnetic resonance imaging techniques, support the hypothesis that iron deposits in MS are a consequence of altered cerebral venous return and chronic insufficient venous drainage


Again, the iron being deposited is from the red blood cells that remain in brain too long because of insufficient drainage from brain--nowhere is he talking about too much iron in the body. Even if you were anemic with low hematicrit, you could deposit iron in the brain by Zamboni's findings.
User avatar
shye
Family Elder
 
Posts: 758
Joined: Sun Nov 29, 2009 4:00 pm
Location: NYC

Postby Cece » Sat Feb 06, 2010 7:36 pm

http://www.ncbi.nlm.nih.gov/pubmed/15961703

Iron stores and vascular function in voluntary blood donors.

CONCLUSIONS: High-frequency blood donors had evidence of decreased body iron stores, decreased oxidative stress, and enhanced vascular function when compared with low-frequency donors. These findings support a potential link between blood donation and reduced cardiovascular risk that warrants further investigation in prospective outcome studies.

They defined high-frequency blood donors as 8 or more in 2 years, so 4 times a year.

I'm convinced enough that blood-donating can't hurt and probably helps.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Cece
Family Elder
 
Posts: 9009
Joined: Mon Jan 04, 2010 4:00 pm

Postby shye » Sun Feb 07, 2010 12:25 pm

Cece-
you might be right--more info like that is what we need.
Zamboni does not cover that angle, just the mechanics of the iron deposits
User avatar
shye
Family Elder
 
Posts: 758
Joined: Sun Nov 29, 2009 4:00 pm
Location: NYC

Postby Merlyn » Sun Feb 07, 2010 1:08 pm

I am not trying to argue/dispute Zamboni findings... I am not a Dr., and reading some of his technical papers are far beyond my ken. For me personally, it is the fact that Zamboni clearly states that Primary Progressive MS is not treatable by his methods anyway... so the purpose of the phlebotomies for my type of MS, is to reduce the iron and see if I improve/or at least stop deteriorating at the rapid rate I am presently going. This is a good article, because it does relate plaques to the condition of the blood, and iron is included...

Also, not everyone in the world is ever going to be able to afford Zamboni's procedures... there was a letter to the editor in my local newspaper stating that vascular surgery of the noninvasive kind has already exceeded the allotted budget for Vancouver island... I don't know whether people with MS are already trying the surgery, I have no idea, but whether the Canadian government will fund this surgery is yet to be determined... and I don't have however many thousands of dollars it will take to do it even if it worked for me...

I am trying to reschedule my phlebotomy as it is not until Thursday... I am out of patience, and just want to get it done... but I may have to wait till Thursday. And pray that it helps.

http://www.teslatech.info/ttmagazine/v3n2/korn.htm

Despite disproportionate numbers of heart bypass surgeries in this country which buoy up hospitals’ sagging economic fortunes––all recent indications would suggest that medical doctors may soon spend more time looking at the blood, and less at the blood vessels, in their battle against heart disease and stroke.

Up until currently, top minds in cardiovascular disease have been busily addressing the nation’s number one killer disease as mainly a matter of plugged plumbing. The pipes, they have long maintained, can be patched: reamed out, stretched open more widely, tented up with tiny stakes, or even replaced with long segments of a weaker material. But studies have accumulated showing that roughly half of the people suffering heart attacks do not have the classic, narrowed heart vessels, as in atherosclerotic, calcified plaque, or the typical “plugged plumbing.”

Increasing acceptance of new risk factors for heart attack and stroke are causing experts to take another look. The American Heart Association published a book on “vulnerable plaque” pointing out that maybe doctors should have been looking at the blood and not the blood vessels. At Long Life Medical, we are already attuned to looking predictively at the blood."


If your serum ferritin level is over 200, then (as a minimum) you should have a physician write a prescription for a therapeutic phlebotomy at the Red Cross. Your blood will be taken weekly, or more often, depending upon, your hemoglobin tests, done to guide your therapy, along with interval serum ferritin level tests. The objective is to get your serum ferritin numbers down to around 50 as quickly as possible. Maintenance treatments are then done.

The treatment of choice at Long Life Medical for elevated levels is therapeutic phlebotomy (blood letting) and IV EDTA chelation, along with appropriate prescribed free radical quenchers. The bloodletting does not harm patients with IOD. In fact, they often feel better after a treatment. There is no other way to get the iron out other than regular therapeutic phlebotomy.

[/quote]
User avatar
Merlyn
Family Elder
 
Posts: 574
Joined: Sun Nov 29, 2009 4:00 pm

Postby Merlyn » Mon Feb 08, 2010 12:56 pm

Barbara-any updates on how you're feeling? Or anyone else have anything of interest in their bloodletting experiences?
User avatar
Merlyn
Family Elder
 
Posts: 574
Joined: Sun Nov 29, 2009 4:00 pm

Postby Merlyn » Mon Feb 08, 2010 1:24 pm

I don't think my transferrin saturation of 44% is normal at all... is anyone else doing iron panels and finding rather strange results?

http://linkinghub.elsevier.com/retrieve/pii/S0016508598705384


Abstract
Background & Aims: An elevated transferrin saturation is the earliest phenotypic abnormality in hereditary hemochromatosis. Determination of transferrin saturation remains the most useful noninvasive screening test for affected individuals, but there is debate as to the appropriate screening level. The aims of this study were to estimate the mean transferrin saturation in hemochromatosis heterozygotes and normal individuals and to evaluate potential transferrin saturation screening levels. Methods: Statistical mixture modeling was applied to data from a survey of asymptomatic Australians to estimate the mean transferrin saturation in hemochromatosis heterozygotes and normal individuals. To evaluate potential transferrin saturation screening levels, modeling results were compared with data from identified hemochromatosis heterozygotes and homozygotes. Results: After removal of hemochromatosis homozygotes, two populations of transferrin saturation were identified in asymptomatic Australians (P < 0.01). In men, 88.2% of the truncated sample had a lower mean transferrin saturation of 24.1%, whereas 11.8% had an increased mean transferrin saturation of 37.3%. Similar results were found in women. A transferrin saturation threshold of 45% identified 98% of homozygotes without misidentifying any normal individuals. Conclusions: The results confirm that hemochromatosis heterozygotes form a distinct transferrin saturation subpopulation and support the use of transferrin saturation as an inexpensive screening test for hemochromatosis. In practice, a fasting transferrin saturation of ≥45% identifies virtually all affected homozygous subjects without necessitating further investigation of unaffected normal individuals.

GASTROENTEROLOGY 1998;114:543-549
User avatar
Merlyn
Family Elder
 
Posts: 574
Joined: Sun Nov 29, 2009 4:00 pm

Postby Merlyn » Mon Feb 08, 2010 1:37 pm

I am starting to get ticked off, they have been studying this mutation for years and years... loss of iron homeostasis combined with the inflammatory responses, no wonder we are having neurological meltdown. I cannot change my phlebotomy appointment, the hospital was booked.


. http://iospress.metapress.com/content/8ayv8j3x2q7fhrg0/

The two most common mutations of HFE are the C282Y (2% of the total population) and the H63D (9%. Mutations in this gene are associated with loss of iron homeostasis, alterations in inflammatory responses and in its most severe form, a clinical disorder known as Hemochromatosis.
User avatar
Merlyn
Family Elder
 
Posts: 574
Joined: Sun Nov 29, 2009 4:00 pm

Postby katie45 » Mon Feb 08, 2010 4:03 pm

M, I have been 'ticked off' for years. When I've voiced this same Logic
it was labelled conspiracy theoroist....All these 'experts' would have to be sorely uninformed all these years....Question is, what to do with the realization...how do we get our lives back. they control the access to any help.
User avatar
katie45
Family Elder
 
Posts: 239
Joined: Mon Oct 18, 2004 3:00 pm
Location: Canada

Postby Merlyn » Mon Feb 08, 2010 5:09 pm

Hi Katie... I prefer to think that they were all just stupid... seems more fitting...

As far as the other, this too is obsessing me, and I haven't even had the first phlebotomy yet... I keep telling myself to wait until that is over to see what happens with symptoms etc. and how I feel. If it turns out that I have the reaction I am hoping to have, I will be investigating how to get phlebotomies supplies over the Web...

http://www.webmd.com/multiple-sclerosis ... n-in-brain

If iron is indeed the culprit, it seems possible to do something about it. Bakshi's team is exploring two ideas. The first is simply to remove excess iron from patients' bodies, and then to devise a way to prevent future iron build-up.
User avatar
Merlyn
Family Elder
 
Posts: 574
Joined: Sun Nov 29, 2009 4:00 pm

Postby Merlyn » Mon Feb 08, 2010 5:18 pm

http://www.rps.psu.edu/0005/iron.html


it was probably my mothers fault, she was not eating enough iron! I wonder if she had pica...

This follows my pattern, I was anemic in my teens and 20s... although it could've been iron loading anemia... but if it was anemia caused by a lack of iron, I could still be loading it now...
User avatar
Merlyn
Family Elder
 
Posts: 574
Joined: Sun Nov 29, 2009 4:00 pm

Postby katie45 » Mon Feb 08, 2010 10:49 pm

yes, stupid would be better for us, except for the fact that they, in their ignorance, must 'approve' any treatment... One would assume they would know a little just through the shear repetition of patients with all these neuro diseases...I am seeing another dr. on mon. 15 as I never did hear back re ; results of iron panel. This one is British and hopefully has more of a clue about HH.
User avatar
katie45
Family Elder
 
Posts: 239
Joined: Mon Oct 18, 2004 3:00 pm
Location: Canada

Postby Bethr » Tue Feb 09, 2010 10:30 am

An update on how I'm going since the blood draw.
It's around 4 weeks now, and I'm slowly losing the high energy I got from the blood draw. I'm definitely slowing down and getting tired in the late afternoons. I'm managing with small cat naps. I still have the chest pain, but it seems to be calming down a bit. I did a good amount of uphill walking yesterday in the morning and it appears exercise helps with the chest pain.

I've just received my appointment date with the hemotologist, for the end of March. I've looked him up on the internet, and it seems he is an expert on hemochromatosis and has had studies published on people with iron overload but just the one HH gene like me. This is very hopeful.

I'm following a diet for porphyria, which funnily enough is very similar to the diet for MS from Dr George Jelinek in Melbourne, Australia. http://www.takingcontrolofmultiplesclerosis.org/

I am so looking forward to another blood draw. It's just such a magic pill for me.

All the best Merlyn, I'm really looking forward to reports on how people feel after their phlebotomy.
User avatar
Bethr
Family Elder
 
Posts: 475
Joined: Sun Dec 27, 2009 4:00 pm

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service