Phlebotomy anyone?

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

Postby Merlyn » Mon Jan 25, 2010 5:10 pm

Hi Bethr, I am sorry that you had this delayed reaction. It is surprising that it happened so far away from the blood donation. It might be that phlebotomy is the ultimate detoxification therapy. It could be that when the body has to find iron in storage sites, that it also pulls out any other metals that are sequestered. Or it could just be that pulling iron from the storage sites causes typical detoxification symptoms. I am no expert. I know that I have had some very strange physical reactions to various chelators that I've tried. I think whenever you pull metals, you get a lot of inflammation because they cause free radical reactions. Maybe iron is the worst of all due to the hydroxyl free radical cascade. I don't know. If I do manage to get phlebotomies, I will hopefully remember to take some substances that might cut down on the side effects. I am thinking activated charcoal, ACZ zeolite, I might even consider some oral EDTA all of that is not effective for mercury and I know I probably still have a high body burden of that stuff. I don't know whether the IP6 could preempt some of them. Quite frankly, I was not expecting your kind of reaction, or I would've said to try to preempt the unpleasantness. The other thing would be lots of fiber, to make sure that the diet is high in things like bran. The phylates would hopefully absorb some of the released toxins. Some people get very constipated on activated charcoal, but I seem to be okay with it. It does absorb most bad guys including methyl mercury. Have you had much mercury exposure? Lead exposure? Also, this may sound strange but when I have done heavy detoxification attempts, I always seem to need more salt. Not a lot, but I do not feel well until I have enough sodium in my system. I don't know enough about phlebotomies and what all to do before and after... again, sorry that you had such a frightening experience. Metals tend to collect in heart muscle according to my environmental illness doctor, she says a lot of mercury gets deposited in heart tissue. And then there is the enterohepatic bile loop that could be redistributing mobilized metals back into the bloodstream. That is why taking gut absorbants can be helpful, but I am still amazed your reaction was so late afterward.
User avatar
Merlyn
Family Elder
 
Posts: 574
Joined: Sun Nov 29, 2009 4:00 pm

Advertisement

Postby Merlyn » Mon Jan 25, 2010 6:01 pm

http://www.hcplive.com/general/publicat ... 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.

Heterozygosity for C282Y is more prevalent in individuals with viral or autoimmune hepatitis. Some evidence suggests that patients with viral hepatitis who are heterozygous for C282Y may have more severe symptoms and respond less well to therapy.13 Thus, increased serum iron concentration may influence the course of the disease.13 These concomitant conditions may also augment iron deposition.1,14

In the 2 cases presented here, these predisposing factors were not thought to be significant contributors. Medications were regarded as the facilitating factor that led to more pronounced symptoms and eventually to the diagnosis of the disease. It is unlikely that the implicated medications contributed to iron accumulation, particularly given their brief use; rather, they exacerbated a subclinical hepatic insufficiency. In these 2 patients, the manifestations of iron overload during the 8th decade of life rather than the typical 5th decade was probably the result of their heterozygosity and decreased propensity to absorb iron from the gastrointestinal tract.
User avatar
Merlyn
Family Elder
 
Posts: 574
Joined: Sun Nov 29, 2009 4:00 pm

Postby Bethr » Tue Jan 26, 2010 12:24 pm

Hi merlyn, must admit I feel like a Guinea Pig.
After the weird events of two days ago, I'm feeling great again.
I slept 9 hours last night! Had a great day with good energy levels.
I'm not as hyperactive as I was in the first week or so, more calm etc.

This is great!

My sister is going to donate blood next Monday, so it will be very interesting to see if she feels any different.
She's been quite good lately anyway, but still sleeps during the daytime.

I'm off to the new doctor today to get a referral back to the neurologist. I'm not looking forward to explaining whats been happening to me since I got the blood draws. New Doctor so heres hoping they have an open mind.

My sister has told me the strange session of wild spasticity I had on Monday was exactly what happened to my grandmother back in the 70's. She was under a neurologist but they never figured out what was happening. She slipped into dementia/alzheimers and spent years in a home before dying at 80 years old in the late 1980's. Not a happy life for her.

They say that alzheimers is caused by a build-up of iron in the brain.
The plot thickens!
User avatar
Bethr
Family Elder
 
Posts: 475
Joined: Sun Dec 27, 2009 4:00 pm

Postby Bethr » Tue Jan 26, 2010 5:17 pm

Great news. My new doctor was wonderful. I do have Iron overload.
She's never seen it in a person with my ferritin levels which are high but in the normal range. I also have the skin pigmentation marks on my arms. My mother had a permanent tan too (I think she had two C282Y genes), I just have patches on my forearms. It's a dirty tan colour and splotchy. It looks like my tan has peeled in places, but it never goes away, even in the winter. I have one patch on one breast also, it just looks splotchy.

So I don't believe I have MS at all, even though I have one lesion and lost the use of my right hand for awhile and it's still probably 90% good now.

Like I mentioned elsewhere. In a clinical study I read, they took 13 hemochromatosis (hereditary iron overload) patients and did MRI's. Half had lesions on the brain, but with no neurological symptoms. They probably copped it in the liver instead, as that's how they traditionally diagnose hemochromatosis.

WRONG!!! My liver is perfect and I have overloaded iron in the brain.

Get it checked guys, as far as I'm concerned, my sister and myself are safe from here on, so long as we get our iron levels down and keep them there we won't deteriorate any more. I believe that 100%.

1 in 10 Europeans have this gene.
I reckon invest in the phlebotomy industry, this is going mainstream sometime soon. Sell big pharma while you can!
User avatar
Bethr
Family Elder
 
Posts: 475
Joined: Sun Dec 27, 2009 4:00 pm

hi bethr question

Postby jak7ham9 » Thu Jan 28, 2010 5:12 am

Hi beth just got my period feeling more energetic, and less tight. I guess tightness is spasticity but i never get jumpy just super tight, Example I can walk across the room today. A couple dats ago barely wall walk. I was looking at blood work from a couple months ago that showed h63d GENE mutatation but my iron levels do not appear particularly elevated. What am I looking for exactly. It is funny on the weekend of nov 14 i went to a party after I had just had a ton of blood drawn for all those tests and I was significantly more mobiile . I never really conected the dots but wow I wonder if it was all the blood being removed. Hmmm
User avatar
jak7ham9
Family Member
 
Posts: 90
Joined: Mon Oct 29, 2007 4:00 pm

Postby ForeverSpring » Thu Jan 28, 2010 8:12 am

Bethr wrote:Great news. My new doctor was wonderful. I do have Iron overload.
She's never seen it in a person with my ferritin levels which are high but in the normal range. I also have the skin pigmentation marks on my arms. My mother had a permanent tan too (I think she had two C282Y genes), I just have patches on my forearms. It's a dirty tan colour and splotchy. It looks like my tan has peeled in places, but it never goes away, even in the winter. I have one patch on one breast also, it just looks splotchy.

This is interesting to me. I am recalling personal high-iron indicated since childhood. I must dig out what old test results I have and take a closer look.

Does the skin pigmentation look like "age spots" or is it different in color or in any other way? I have had for several years a lot of small, freckle-sized spots, which I considered to be "age spots", whatever that is. However, I recently have developed large splotches of similar pigmentation, and recall that my father had the same.

I am also of Northern European ancestry.

Will your splotches disappear when your iron overload is sufficiently reduced?

ForeverSpring
User avatar
ForeverSpring
Family Member
 
Posts: 81
Joined: Fri Apr 24, 2009 3:00 pm

Postby Bethr » Thu Jan 28, 2010 10:54 am

There is a link over on the altitude & blood flow thread to show the pigmentation on a womans face. It's not like age spots.
Apparently it goes away once you are de-ironed.

The iron test that showed up my high levels was transferrin saturation (tsat). Mine was 62% a short while before I got my lesion.
I think the Tsat shows how saturated your transferrin is with iron. Transferrin moves the iron around the body, some sort of delivery system (?). Normal is about 20-30%.
User avatar
Bethr
Family Elder
 
Posts: 475
Joined: Sun Dec 27, 2009 4:00 pm

Postby Merlyn » Thu Jan 28, 2010 12:56 pm

This is why reading The Bronze Killer is so informative. I too have brown speckles, and here is January and I am still tanned from the summer, it is not fading like a normal tan. The iron is in the skin and reacts to sunshine by oxidation... not everyone gets this, some people do not show any skin pigmentation at all. I did not used to, this is recent. Plus I find most people with MS do not going to the sun because of heat intolerance. When I got onto the proper thyroid medication, I could tolerate sunshine once again otherwise I would not be brown either. I think it's going to take a while for people to realize that MS is a manifestation of hemochromatosis. I know that that is such a startling conclusion that is going to take a while for people to understand that carriers can load iron and this iron loading results in MS pathology. MS can be treated the same as hemochromatosis! By phlebotomy! It is so simple, and the MS industry is going to crash. Thank God. Go give blood! And report back with how much better you feel! I know I know it is hard to get one's head around that, but please understand that MS has never never never been treated by phlebotomy because nobody understood it is iron loading!
User avatar
Merlyn
Family Elder
 
Posts: 574
Joined: Sun Nov 29, 2009 4:00 pm

Postby Merlyn » Thu Jan 28, 2010 1:43 pm

I just wrote the following to Chris Whittington, she is one of the more eminent researchers of hemochromatosis in Canada. She wrote a book called Ironic Health and she lives in Vancouver... here it is:

My name is Marilyn Bachmann, I live in Sidney on Vancouver Island. I am very debilitated by "MS" and it has been one long journey of research. The path leading to my startling conclusion has been arduous. But I have made a startling discovery and I know that I am right. I believe now that people with MS are heterozygote (I am), but we have a problem with iron loading despite the fact we only have one genetic mutation. I know that there is tons of research pointing towards MS as being influenced by these mutations, but you have to realize MS has never been treated, ever, with phlebotomy. And this is what will fix us!

People in Canada are not allowed to donate blood, but a woman in New Zealand who is a heterozygote kindly went and donated blood at my urging and has had an amazing reduction in symptoms which I expected... now people who are doing major blood draws for lab work are noticing reductions in symptoms when the blood is removed. I too have had this phenomenon. It all makes so much sense now, and I need some eminent researchers like yourselves to jump on board and treat a few cases of MS with phlebotomy. This is such a startling turnaround, I know I am going to have to major resistance to the whole concept that MS is actually just a milder form of hemochromatosis. We load iron, maybe a slower rate, and maybe we deposit the iron in different locations... but the cure will be the same! It has never been, I don't believe it! Even with all of the studies linking mutations like C282Y to multiple sclerosis, phlebotomy has never been tried as a treatment! Even Dr. Paolo Zamboni who has recently come out with all of the studies linking iron in MS pathology has never even mentioned phlebotomy as far as I know. I do not have the results of my transferrin saturation test yet, but my doctor here in Sidney has agreed to do a couple of trial phlebotomies for me, even though he thinks it is a bizarre request. But I know that it will result in major improvement. I know that you don't know me and might consider this a "crazy" e-mail, but when I read The Bronze Killer by Marie Warder, things began to fall into place, I had the genetic testing and came back heterozygote... then I started to do all the research into whether heterozygotes could load iron, and there is lots and lots and lots of evidence to support that some of us do. I am still tanned looking in January, but that is a recent phenomenon. This last summer I also developed a lot of brown spots and now understand why.

MS is a form of hemochromatosis!!! It can be treated the same way! Quite frankly, I sometimes find myself giggling because of all the millions and millions of dollars spent on MS research, and the solution is so simple... phlebotomy!
User avatar
Merlyn
Family Elder
 
Posts: 574
Joined: Sun Nov 29, 2009 4:00 pm

Postby shye » Thu Jan 28, 2010 4:02 pm

Merlyn,
you might be partially right--
I am running across references to MS as an Iron Dysregualtion disease (see my post here in this thread on 1/24) and this one re: porphyria and MS
http://users.stargate.net/~rnr/research.html

this study is showing LOW, not high iron in the porphyric MSer's, due to absorption problem.

I am getting my fasting iron tested early next week, If anything, I will be low (did have low TIBC a few months ago, but not taken after fasting).
User avatar
shye
Family Elder
 
Posts: 758
Joined: Sun Nov 29, 2009 4:00 pm
Location: NYC

Postby Merlyn » Thu Jan 28, 2010 4:59 pm

Hal Huggins DDS has always maintained that is a type of porphyria, but personally I have never had any symptoms of that. But yes, there are probably different etiologies. However, if we can sort out a way to identify subsets and groups, perhaps we could finally come up with targeted/effective treatment. I know how I have felt since menopause, and the astounding alleviation of some symptoms even with a small amount of blood drawn. Do people with porphyria have genetic mutations for hemochromatosis? That would seem unlikely... although I would have to look it up. Perhaps identifying those who are heterozygotes could point to the proper treatment. I just know that in all of my searching phlebotomy does not ever come up as a treatment! This is why it must be tried! Perhaps not everyone, but by those who can identify transferrin saturation etc. As soon as I get my results I will post them, but even if they are "normal", I am going to try the phlebotomy!

http://tinyurl.com/ykgje5m
[/quote]
User avatar
Merlyn
Family Elder
 
Posts: 574
Joined: Sun Nov 29, 2009 4:00 pm

Postby Bethr » Thu Jan 28, 2010 10:21 pm

I think you may have pointed me in the right direction again.
Another symptom turned up this morning, I awoke with a very itchy lower forearm. It was itchy blisters. I've been out in the sun (full summer here :) for two days getting things back in shape whilst I have the energy.

I've just come in from a bush walk and read your posts and looked at the link Shye put in with a description and then looked down at my itchy blisters - Oh my...........I've popped most of them by stratching, but you can see one new one in the centre at the top. I'm feeling good otherwise.

Image

I know exactly what this is. I've had this since 16 years of age, but it was usually on one leg only. My grandfather had it too, very bad on his legs. Its plagued me for years, and finally receded about 10 years ago when my stress levels went down (I semi-retired), although I occassionally get one or two blisters at odd times, especially under stress. Never on my arm before though.

Cure is of course...... phlebotomy. And I shouldn't go out in the sun until it's in remission.
User avatar
Bethr
Family Elder
 
Posts: 475
Joined: Sun Dec 27, 2009 4:00 pm

Postby Bethr » Fri Jan 29, 2010 12:51 pm

Next clue in the puzzle from my research is Nickel Allergy.
Do you have an allergic reaction to cheap jewellery, watchstraps, zips that touch your skin, or studs on jeans etc?
Can you tolerate only gold jewellery or stainless steel (maybe silver too).

It comes up in little bumps and is very itchy.
This may tie in with the Porphyria.
User avatar
Bethr
Family Elder
 
Posts: 475
Joined: Sun Dec 27, 2009 4:00 pm

Postby Bethr » Fri Jan 29, 2010 1:07 pm

What I'm getting at here is this.
Both my sister and myself have been told by doctors we have MS.
We both have lesions and unexplained fatigue and MS symptoms.
Me for two years and and my sister for twenty years+
What we actually do have is this:

Heterzygous C282Y gene for hemochromatosis
and combined with
Porphyria Cutanea Tarda (presents as eczema if at all)

The cure is removal of iron to low levels by phlebotomy, hopefully before too much damage is done.

Goodbye MS :D :D :D :D :D :D
User avatar
Bethr
Family Elder
 
Posts: 475
Joined: Sun Dec 27, 2009 4:00 pm

Postby Merlyn » Fri Jan 29, 2010 1:58 pm

I cannot wear any silver jewelry, it turns my skin black, my mother also had an allergic reaction to silver... I cannot take colloidal silver I feel sick instantly.

I think people with metal overloads become very hyper allergenic. I know from studying chronic mercury poisoning, this is common. My former Dr. in the United States was an allergist and he said he saw the main thing that happened when people had their amalgams removed was a reduction in their allergies. I actually had a test called a Clifford reactivity tests that showed I was sensitive to a different metals including silver... also mercury, cadmium, nickel, even cobalt which is B12 of course.

I imagine iron can create all kinds of immunological problems. My younger sister is so allergic to nickel she gets contact dermatitis from even touching it. There is so much nickel in stainless steel she can't use it. She was showing some signs of MS a few years ago but she seems to be holding steady.

Maybe some of us have more sensitive immune systems to metals. Including iron. Since they do not know what causes MS and there is all of this iron in the bodies of people with MS, how can they discount iron as the potential instigator of MS pathology? I think we are going to have all kinds of turf wars, people have invested heavily in making MS seem like the most complex condition that must be treated pharmaceutically. Or surgically. We need to know if simply reducing iron levels will allow the body to revert to normalcy. And phlebotomy is the most effective way of reducing those iron levels. To me it is so simple, and must be done. I beg of people that can do it to go out and give blood (blood donors live longer, that it's been known for decades). We need some brave souls to join in and give blood.
User avatar
Merlyn
Family Elder
 
Posts: 574
Joined: Sun Nov 29, 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: ALA


Contact us | Terms of Service