Phlebotomies/MS

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

Phlebotomies/MS

Postby Merlyn » Mon Feb 15, 2010 12:51 pm

http://www.hcplive.com/general/publications/Resident-and-Staff/2005/2005-03/2005-03_04



Heterozygous C282Y mutation

Heterozygotes of the C282Y mutation represent a small proportion of patients with hemochromatosis. This subgroup is not well studied, and the natural history of their disease is poorly understood.12 Approximately 25% of heterozygotes have abnormal iron studies.1 A smaller percentage have iron overload as high as that of homozygotes. Complications caused by iron overload in heterozygotes have generally only been reported in association with other risk factors, usually viral hepatitis, alcohol use, or porphyria cutanea tarda.
http://www.hcplive.com/general/publications/Resident-and-Staff/2005/2005-03/2005-03_04



Heterozygous C282Y mutation

Heterozygotes of the C282Y mutation represent a small proportion of patients with hemochromatosis. This subgroup is not well studied, and the natural history of their disease is poorly understood.12 Approximately 25% of heterozygotes have abnormal iron studies.1 A smaller percentage have iron overload as high as that of homozygotes.


I cannot find any follow-up studies on what happens to these heterozygotes that iron overload! Duh, do you think maybe we develop MS or Parkinson's or Alzheimer's... it's like they just ignored this entire subset of people. There don't seem to be any follow-up studies on what happens in three or four decades to these people that are shoveling iron into the brains.

It occurred to me this morning that Michael J. Fox is probably in the same boat. He would be at the same Celtic background (I read once that red hair is a sign of iron in the hair). My guess is with all of the different treatments he is tried, phlebotomy is not one.

It is so clear to me that we really need to do more iron panels, determine if there is abnormal iron metabolism, test for genetic mutations for hemochromatosis, then implement the treatment of phlebotomy if there is any doubt. I am simply ecstatic with my results of one phlebotomy... I also know that I am simply one voice on the Internet competing with 1 million other voices... however, I have found my Holy Grail and I am hoping others will investigate and join me in recovery.
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Postby Bethr » Mon Feb 15, 2010 1:51 pm

I add my voice to Merlyn's.
One phlebotomy and my MS symptoms of fatigue and daytime sleeping, and a feeling of heavyness & apathy disappeared. Very miraculous.
I have one gene (C282Y) for hemochromatosis, the same as Merlyn, my sister also has one C282Y gene and was DX'd with MS 20 years ago.

The journey out of being "iron overloaded" was much more dramatic than my journey into that void, which slowly stole my life away.

I cannot stress enough how this has helped me and urge people to follow this up. I believe I will need ongoing phlebotomies to keep my iron levels low.
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Postby Merlyn » Mon Feb 15, 2010 1:55 pm

My letter to the Michael J. Fox foundation... spoke to the receptionist and the more I talked the more she listened... she had me right to the scientific research department... Michael J. Fox's from Vancouver originally , here's the letter:



Has Michael J. Fox ever been tested for carrying the genetic mutation for hemochromatosis?

This is the most common genetic disorder in Canada, one out of every six people of Irish background carry this mutation. My guess is that Michael J. Fox has a Celtic background and is at higher risk for carrying this. What does it mean? People with two genetic mutations (homozygous) develop in general full-blown hemochromatosis, and these people are identified through laboratory tests for iron. They would generally have very high ferritin, or high transferrin saturation, and this would set off the alarm bells, and phlebotomy would be instituted to correct the accumulation of the iron...

However, people that have only one genetic mutation (labeled carriers) can also overload iron. I have MS, and as it turns out I am a carrier for the C282Y genetic mutation, and my iron metabolism is skewered by abnormally elevated transferrin saturation. Mine is 44% and normal is 30%. 45% is the cut off where people get identified as having full-blown hemochromatosis. Transferrin is the "baggage carrier" that deposits iron into the brain. Lately it has been revealed that people with MS have iron deposits in the brain, and it does not surprise me whatsoever because 25% of heterozygotes iron overload. They know this! And I cannot find any studies that do any follow-up on these people that are slowly loading iron, the heterozygote group. Everyone with MS that I am managing to convince to test for this genetic mutation is coming back as heterozygotes. We overload iron! My educated guess is that people with Parkinson's also have this genetic mutation, but they are heterozygotes and do not trigger the alarm bells on iron metabolism in the same way that homozygous people do.

I recently had one phlebotomy. It is astounding. I have had a 20% reduction in spasticity, 20% of my hand function has returned, and I am no longer spasming all night long. Next week I have another appointment with the doctor and I will tell him of the improvements, and hopefully continue treatment. My guess is that Michael J. Fox has never been tested for hemochromatosis, and I further expect him to be heterozygote. What works to correct the damage is phlebotomy. Please do not discount this e-mail, because it's all quite simple... people with MS, people with Parkinson's, and probably people with Alzheimer's iron load. There has been extensive research done between the link of these genetic mutations and the iron loading diseases, but for some reason nobody has ever realized that the treatment will be the same... phlebotomy. Phlebotomy is the only thing that works in hemochromatosis, and it is what will work for the heterozygote population, we simply load iron at a slower rate. Michael J. Fox has to be tested! And if he comes back positive, as a heterozygote, he can be treated with phlebotomy! And perhaps Exjade the iron chelator, but my guess is phlebotomy will do most of the work.
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Postby ClaireParry » Mon Feb 15, 2010 2:15 pm

Hi,

If this info is somewhere I apologise, but how much blood do they draw each time?

Thanks

Claire
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Postby Bethr » Mon Feb 15, 2010 2:43 pm

Hi Claire, a number of us had noticed improvement in our symptoms during menstruation. I ceased to daytime sleep on those days and depending on how heavy the period was would get 5-14 days relief. As the past two years moved I noticed my sleeping periods were increasing.

I returned to my doctor because I was getting more and more tired, heavy and lethargic. My doctor did a big range of blood tests, probably took around 100mls of blood. It was an early morning fasting blood test, and that afternoon I didn't feel heavy and sleepy. The next morning I felt wonderful, had lots of energy and felt light like a fairy :D , I tackled many jobs around the house i hadn't looked at in years. The next three days were equally as great. On the fith day, I fell back into the sleeping state I had been in for years.

I returned to my doctor for test results, which showed my iron levels were near the top of the normal range, my transferrin saturation was at 51%.
I told the doctor what happened with my energy levels and symptoms. She said my iron levels were normal.

I knew what had made me feel better, loss of blood, so with my Doctor basically fobbing me off I went to the blood bank and donated blood, 470mls.

Once again, the effect was dramatic, my energy levels were high, I felt light again and had an amazingly high libido (shocks and horrors, my husband thought it was great!). My joints were fluid and moved beautifully, whereas I had been investigated for arthritis two years earlier and always felt stiff and sore, especially in the knees and hips.

On day seven after the phleb I had a serious spasticity fit and heart arthymia. The arythmia continues, but is every day abating. I have never experienced spastiity or any heart problems before, but I believe this is the iron moving around my organs as I have drawn on the storage areas, I am exercising every day and that seems to help.

One month later now and most of the time I feel 20 years younger. My business that has languished for a number of years is moving fast forward and I feel great and feel I can plan ahead with confidence.

I am seeing a hemotologist next week, so will have more details then, and hopefully another phlebotomy.

The beauty of all this, is that giving blood is trivial.
The effects of high iron are devastating and are not being recognised by the medical profession.

My ferritin was never over 175!
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Postby shye » Mon Feb 15, 2010 3:23 pm

Merlyn,
Why are you starting a new thread on phlebotomy here, in the same topic where you already have an 18 page thread, still going strong???
This is very annoying.
Some people won't know there are 2 threads on the identical topic, so will read only one, and so possiibly miss important information. and the duplication of questions and answers is tedious.
This is just adding to the unruliness of this site, which is massive; there is no reason to complicate things.
Please transfer this thread to the other, or ask the moderator to.
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Postby Merlyn » Tue Feb 16, 2010 1:22 pm

Okay, how do I get the moderator to change it back? It's just that the whole subject was becoming so diluted that I was afraid people would zone out from all the excess information that they don't want to wade through. Discussions on niacin flushes etc. don't belong in that thread and I wanted to somehow refocus the subject. How do I control that without coming across as intolerant? I am just really excited about the fact that there is possibly a very drug-free and effective treatment for MS through phlebotomy... this gets to the heart of the problem. For me it has been more effective than years and years of struggling trying every therapy under the Sun. If it works for me, it will work for many many others. We just have to do iron panels, ascertain who is iron loading, do the phlebotomies and revel in the fact that we can reverse this crap.
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Postby Merlyn » Wed Feb 17, 2010 12:41 pm

How do I get a moderator to merge this thread back into Phlebotomy Anyone?

I did talk to my naturopath yesterday, but I think that I sort of overwhelmed her with too much information. She was interested though, unfortunately she sort of switched her focus from heavy metal detoxification to sports injuries... she did that a few years ago. But she is originally Canadian and she comes up here sometimes to visit her father, so she does know of some local doctors. She recommended a woman for me that might be open to treating me this way IE phlebotomy... but we don't know yet what the legality is of phlebotomy and naturopaths in Canada is... however, NDs have a philosophy "It's what you put in, or what you take out!" She thought any ND would be interested and willing to work with me because it is such an interesting approach. She offered to talk to this ND and testify that I am a sane person! That we have had a relationship for many years, and I am not some weirdo that would be requesting bloodletting for no reason.

Of course, that route would be very expensive, and it will be a last resort. But it might be available if I can't get this anywhere else.
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Postby jimmylegs » Wed Feb 24, 2010 6:29 am

hi, there is no easy way to change it back. mods cannot simply move posts about within the CCSVI umbrella, all we can do easily, is move things right out from under CCSVI to a different area.

if you guys want to do the work to copy the new thread's posts back into the old thread and then delete the new stuff that is probably your best option.

HTH
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