Phlebotomy anyone?

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

Postby Merlyn » Mon Mar 29, 2010 12:01 pm

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Postby katie45 » Mon Mar 29, 2010 12:32 pm

I'm hoping the test kit comes today altho mail has come (no pkges) I hope they bring it to the door as I have no way of getting to an outlet......
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Postby katie45 » Mon Mar 29, 2010 12:54 pm

yOU ARE NOT THE ONLY ONE...sorry about the caps...I was not even able to be there for my kids/grandkids because of their DECEIT!
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Postby Bethr » Mon Mar 29, 2010 1:10 pm

That article is quite amazing Merlyn. Now that I have found the ailments we have is caused by having mutations in genes. Both HLE gene connected.

The combination we have is Hemochromatosis/Porphyria genes.
I thought it may be helpful for people to see how our family have been diagnosed with numerous other maladies, when all the time the connection was iron overload.

a) My sister - Injected with iron as a teenager for anemia when she had an HH gene. Later diagnosed with MS, after optical neuritis, brain lesions, trouble walking, wobbly legs, nerve damage in hands. Severe fatigue and daytime sleeping for 20 years. High iron levels.

b) Myself, got through life well and healthy until iron levels peaked in 2007 at age 45, then developed brain lesion and lost use of hand 14 days after dental anaesthetic, probable MS DX. Severe fatigue and daytime sleeping three years. Spasticity fit. Got worse after another dental anaesthetic in 2009.

c) Brother - Contracted Hep C early 90's. Interferron treatment failed. Severe fatigue, sleeps 19 hours per day, blamed on hep.c. virus. Very high iron levels.

d) Son - Age 6, Severe ADHD, possibly autism/Aspergers, after local anaesthetics, high iron levels, mildly positive for celiac disease. All symptoms started after two local anesthetics age 5. All symptoms disppeared after 3 years, age 9 after growth spurt (lowers iron levels). Age 13/14 was given two further local anaesthetics for mole removal and
cut on leg. Started having convulsions & fainting. high iron levels again.


So how do we treat all these very sick people.
PHLEBOTOMY - Get the iron levels down and all these symptoms go away.
When iron levels get high in our family, we start to react to drugs. The everyday drugs everybody encounters. But the catalyst is high iron levels. It's severely toxic and triggers other genes to kick in. I believe that if our iron levels had never been raised, none of us would have ever had trouble with our other problem gene which is Porphyria.

Iron is a catalyst for more severe disease, whether it be ALS, alzheimers, MS, vein problems, viruses and cancer.

My mother had two hemochromatosis genes and died of ovarian cancer aged 53. Cancer loves iron, it needs iron to grow. Excess amounts in the body feed it and it can move around to storage areas. Excess amounts of it in the body feed viruses. Excess amounts in the brain cause degeneration.

The latest research in heart disease is reduction in iron levels.
The latest treatment for cancer is reduction in iron levels.
The latest treatment for hep.c. is reduction in iron levels.
The treatment I'm receiving for Porphyria is reduction in iron levels.

Iron metabolism imbalances I believe will be the central research for many ailments in this century, and we'll all look back and ask why on earth Government legislated that all our flour is fortified with iron, our bread is fortified with iron, our rice is fortified with iron, our breakfast cereals are fortified with iron. Doctors prescribed iron to patients willy nilly, and injected it into them in many cases causing disease.
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Postby katie45 » Mon Mar 29, 2010 1:17 pm

I am sooo angry! This is mass genocide thru trust...my God! I need a drink...and calm down ...where is the standard of care..they will and do claim ignorance and get away with mass murder...
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Postby katie45 » Mon Mar 29, 2010 2:22 pm

Bethr, I'm stealing your post to stick it on another site...I hope that is ok..they desperately need this info and maybe can relate better to it..?
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Postby katie45 » Mon Mar 29, 2010 3:02 pm

A very kind neighbor dropped in and gave me 4 cans of campbell's chunky veg. soup. I just now had a look at the labels...8% iron,6%,9% depending on kind...
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Postby shye » Mon Mar 29, 2010 3:42 pm

Katie,
There is no way to get away from iron in food. Just make sure there is none added to what you eat, and try to minimize what you do eat.
If you eat meat, don't eat it with tomatoes, citrus fruit, or Vit C--all will increase the absorption of iron.
Likewise, with non-heme iron containing foods, avoid eating it along with anything that will increase absorption of iron.


(edited--thanks dbl for catching me asleep!--can't believe I wrote that--did the same on a metaphysical site right after posting above error--on that site, said fear instead of love!! do have a tendency for dyslexia--am under lots of pressure right now, and definitely will not post until get some sleep--thanks again)
Last edited by shye on Tue Mar 30, 2010 2:42 pm, edited 1 time in total.
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Postby katie45 » Mon Mar 29, 2010 5:10 pm

thanks shye,
I understood that coffee stops iron absorbtion....is this wrong? and tea as well..can't find the link but if googled....it's there in most info..
I know alcohol and vit C increase iron absorbtion....


''Apparently tea taken with meals can contribute to iron deficiency by inhibiting iron absorption, while coffee has also been shown to reduce iron absorption ...''
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Postby shye » Mon Mar 29, 2010 5:23 pm

yes, both tea (tannin) and coffee help decrease absorption of iron.

see #12 in this fact sheet from "Iron Overload" http://www.ironoverload.org/facts.html
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Postby dlb » Mon Mar 29, 2010 5:39 pm

Sorry for the query Shye,

I'm not following.... why would one avoid tea or coffee then?
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Postby katie45 » Mon Mar 29, 2010 6:26 pm

shye, could you delete your post that says coffee/tea increases absorption of iron. thanks



Hi dlb (fellow Canuck) just a little misinformation and should be deleted (we have drs. for that!) lol
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Postby Merlyn » Tue Mar 30, 2010 12:00 pm

I am so glad I called Steve Barfield way back when because he has really been so helpful to me. And I think he is pleased at the number of people that are asking for advice. He sent me this morning because I had asked him about ferritin...

We know that when there is any excess iron showing in labs that the brain is probably involved. Years ago we used to think that the liver was the first to load and the first to unload during treatment. Now we think that of the brain.
Medicine knows something about ferritin that gets in the way i.e. that it is acute phase reactive. This means that is can be temporarily elevated by a passing infection or inflammation. So when this is the only lab value that is elevated, doctors tend to discount this test.
Ferritin causes brain symptoms at a level above 50. For your case, phlebotomy should continue until you ferritin reaches 10 and then you will need a maintenance schedule custom fit to your metabolism to keep that level.
For years they told us that everyone was born with a certain amount of brain cells and that through life's attrition they are drawn down. The latest information is that the brain does regenerate cells and even in the very elderly.
There is a brain iron medication that will go into clinical trials at the end of this year. Initially it only for Alzheimer's patients, but eventually all iron brain involved patients will benefit. Anavex Pharmaceutical has a new approach to brain that draws excess iron from the brain. The compounds with which they are working have done wonderfully well in animal trials.
Keep your fingers crossed, I think that we can see a light at the end of the tunnel.
Steve Barfield - President
Iron Overload Diseases Assn.
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Postby Merlyn » Thu Apr 01, 2010 11:51 am

Katie's computer has crashed, she will be back when it's fixed. I saw my GP yesterday, he is going to wait for blood results before authorizing another phlebotomy. But I don't think he understands that you have to reduce ferritin to 10 to get iron out of organs, but I will wait for the numbers to see what's up.
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Postby katie45 » Thu Apr 01, 2010 1:27 pm

Wow, u don't realize how you rely on this internet till it's gone! Had to buy a new hard drive...yuck. Sent my dna test off today...hoping I did it right. So, 1-2 weeks...I'm really excited to learn more about the new drug for removing iron from brain..
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