Phlebotomy anyone?

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

Postby Bethr » Sat Mar 27, 2010 2:32 pm

This article on CCSVI has some good comments. Iron is discussed, as are porphyrins. One MS person says "I have always been anemic" "How many of us anemics were given iron supplements as a child".
My sister certainly was, straight into the muscle, weekly, and has an HH gene to boot.

http://www.gizmag.com/ccsvi-multiple-sclerosis-ms-cure-zamboni/13447/
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Postby katie45 » Sat Mar 27, 2010 3:18 pm

Bethr, my sister too has 'always been anemic' according to docs and they are still giving her iron( even post liver transplant) it pisses me off that they didn't gene test her at all thru this money grabbing scheme. I hope to get the cheek swab test kit by mon. and should get my dna test results 1 to 2 weeks. God willing it will tell us 'something'. Then I guess it's back to dr. to beg and plead for another porph. blood test...the urine test is not great as u have to be in an attack for it to show...gotta love this 'modern science' era.
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Postby katie45 » Sat Mar 27, 2010 3:51 pm

Hey guys, dr.cardiologist gave me atenol (beta blocker) for rapid heart bt. I don't like drugs but just took one (the first) after 4 days of staring at the bottle...if I keel over, we'll know why. Has anyone had to take a beta blocker? What does it feel like?
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Postby Merlyn » Sun Mar 28, 2010 12:47 pm

Katie 45-I don't think you are crazy! This link between hemochromatosis and MS is so far out of the mainstream... and we have no idea what mild hemochromatosis ends up being. I guess they call it mild, I would call it a nightmare.
What is crazy is how much they have studied this and never related it to all of these iron loading conditions...

Relation between HFE Mutations and Mild Iron-Overload Expression


<shortened url>

Abstract
The identification of the HFE gene involved in hemochromatosis allows genetic tests based on mutation analysis to be performed. However, discrepancies in the correlation between HFE genotypes and iron-loading status have arisen. We investigated 708 patients with various signs or symptoms suggesting a putative iron overload that, nevertheless, did not reach the current criteria for hemochromatosis diagnosis. Most of the patients (91.4%) included in our study displayed one of three classical iron marker values above the threshold defined for iron overloading. HFE mutation analysis allowed us to identify 45.7% of carrier chromosomes in the studied group of patients that showed higher frequencies of HFE mutations compared with controls. In addition, the frequencies of compound C282Y/H63D heterozygous, H63D/H63D homozygous, and C282Y heterozygous genotypes were higher than those in HH probands and controls; they accounted for 16, 5.6, and 22.5% of the patients, respectively. All genotypic groups had a significantly higher value of serum ferritin concentration compared to the normal value; only the C282Y homozygotes and compound heterozygotes with H63D had a transferrin saturation significantly higher than the normal value. On the whole the H63D homozygous and compound heterozygous patients constitute an intermediate phenotypic group between HH and controls. Some of them may reach the critical overloading defined for HH diagnosis along with a potential risk of developing complications, whereas others only show a partial phenotypic expression.

Author Keywords: HFE; mutation analysis; iron overloading; hemochromatosis
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Postby katie45 » Sun Mar 28, 2010 1:10 pm

M, thank u for the sanity vote...I've always said 'If I am not crazy, I sure should be by now! Surfing the net I am seeing our/your theory is catching on
nicely...we will not be popular with mainstream medicine I predict!





moderater, can you fix our thread? It 's wide again. thx
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Postby katie45 » Sun Mar 28, 2010 1:29 pm

When I get results back from DNA test, depending on results, I am reserving the right to react in whatever way suits me....( I suspect it may not be pretty) I will, however, make sure we communicate before I react...
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    Postby Merlyn » Sun Mar 28, 2010 3:54 pm

    Well for me, two phlebotomies has seemingly stopped the progression. Hopefully I can continue to get more of them. I too noticed that the idea is appearing on blogs etc. Good. The more people that are trying to access phlebotomy, hopefully the easier it will be to get them. Personally, I cannot believe I would be the only person with primary progressive MS to react well... and the more people that respond as I have done, the more accepted the theory of multiple sclerosis being "mild hemochromatosis", will be and the more common phlebotomy will be used as a treatment. I am trying to find a website that said if someone had other health conditions and were concerned about 500 mL of blood being removed, they could remove 50 mL 10 times. Cannot find it... was looking this morning.



    http://hemochromatosis.blogspot.com/


    Would you believe that blood iron saturation tests were the subject of massive fraud cases settled in 1996, causing the tests to be dropped from “standard” panels. That single twist of fate kissed goodbye one of the best screening tools for hemochromatosis in the very same year that doctors discovered most hemochromatosis was genetic. Which was also the year that many clinics started to refuse blood donations from people who had lived in Europe (due to mad cow disease).

    Guess who had lived in Europe? My partner and I. Guess who were big blood donors until 1996? My partner and I. And 1996 is when her health started to decline. Very slowly at first, but then accelerated by menopause (monthly blood loss due to periods tends to fend off the effects of hemochromatosis in women so they are often diagnosed later than men, but with more damage done).
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    Postby katie45 » Sun Mar 28, 2010 4:18 pm

    Yes, I read that too. What I see from all this research is the medical machine has simply taken hereditary genetic probs ie;(hemochromatosis, porphyria) and assigned labels to their manifestations, then refuse to treat the underlying prob...welcome to the 'Name Game' How cruel ! I think we need to talk after my results come in?
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    Postby Bethr » Sun Mar 28, 2010 4:30 pm

    I believe this mantra "You have to have two HH genes to have hemochromatosis" is nothing but genetic discrimation. In some ways, the discovery of the the gene put us backwards in treatment. The iron overload diseases Association states, "treat the symptoms", forget the genetics!

    Really hard to get that done though, as we found, without the blessing of illinformed doctors!!!
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    Postby katie45 » Sun Mar 28, 2010 4:44 pm

    Bethr, as far as I'm concerned, this is nothing less than a 'crime against humanity' and indictable as such...
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    Postby katie45 » Sun Mar 28, 2010 5:28 pm

    Bethr, I don't believe the drs. are as 'illinformed' as they are 'gagged' Makes you wonder where the Hippocratic Oath' fits in here. When I was Praying for death I didn't realize they were wanting it for me as well.. to do nothing when you are in the sanctioned business of medicine is fraudulent !
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    Postby katie45 » Sun Mar 28, 2010 5:49 pm

    Merlyn, I was told once that I was spms (another *...ing label) ppms means nothing but how much the iron is affecting u post menop. You/we all will totally recover as we get rid of the poison..I know that you know better even than most how the body will heal itself if the offender is removed..I shudder to recall the doomsday claims made by all the licensed A holes I had to hear thru this!
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    Postby Merlyn » Mon Mar 29, 2010 11:07 am

    Newly emerging science has it that vein anomalies allow excess iron to pool in the brains of MS victims. Iron also over stores in the myelin sheath that covers all nerves irritating and causing them to fire unexpectedly. All MS patients should be screened for hemochromatosis or iron overload. The doctor
    you take this information to will not have heard of it yet. You are not asking him or her to experiment, only to screen for iron and treat it when and if it is found. MS pts should go to our web pages on "Diagnosis", "Treatment" and "Diet" at: www.ironoverload.org .

    Print out the diagnosis page and take it with you to your doctor's consult as not all doctors are up to date for iron.

    Based on our experience with seizure disorders and Parkinson's, the brain responds wonderfully well to the de-ironing process and these symptoms were reversed. From our perspective, it may not even be necessary to have surgery to correct the vein anomalies. That discovering and treating the iron may be all that is necessary.

    MS patients please call and let us know your successes an failures with this information at: 561-586-8246 as the research continues....

    Steve Barfield - President
    Iron Overload Diseases Assn.
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    Postby katie45 » Mon Mar 29, 2010 11:50 am

    it says quote: only to screen for iron and treat it when and if it is found. MS pts should go to our web pages on "Diagnosis", "Treatment" and "Diet" at: www.ironoverload.org .

    According to this I'm screwed because in my test it was not 'found'. Why??
    we are NOT all the same...
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    Postby Merlyn » Mon Mar 29, 2010 12:00 pm

    Katie45-I am really really hoping that your test shows the genetic mutation, because I believe it will put yet another face on hemochromatosis. But again, we will have to wait and see because the very high TIBC that you show looks like a different form of iron loading. I really think people should not do IP6 prior to doing the iron metabolism testing. I was sorry I was taking it prior to the test, I quit five days before hand, but I don't know whether it lowers the transferrin saturation, in my case by one point that would've clinched a hemochromatosis diagnosis. I feel your frustration! I was talking to a friend yesterday, she is an old high school friend, she immigrated to Canada from Belfast Ireland. Her father died of liver cancer at the age of 50. She herself has high blood pressure and her thyroid is basically a hardened mass... and no, she has not heard of hemochromatosis.

    Based on hemoglobin alone, you should be able to do phlebotomy if you can find anyone to help you. I know, there's the rub...
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