Phlebotomy anyone?

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

Phlebotomy anyone?

Postby Merlyn » Mon Dec 28, 2009 1:33 pm

I am Primary Progressive, according to Zamboni, my chances of being helped by angioplasty/stents is pretty low. Marie Warder's publisher was so kind to get back to me with a vicarious answer from Marie Warder that chelation is unlikely to be effective...

I have been experiencing menopause from hell, much worse than other women I talked to... on this blog, it mentions the continual/intense hot flashes that can come from iron overload...

http://cobbsblog.com/blog/?p=206

My question is whether anyone is considering trying to get phlebotomies, because this treatment causes iron to come out of storage sites and eventually levels get down to normal. I have been doing research, and I have yet to find any studies that have even suggested phlebotomy for MS. I find this amazing considering all the bizarre therapies that have been tried over the years like urine injection, bee stings etc., although I realize the bee sting therapies have their adherents. Considering that thick blood has long been noted in MS, it amazes me that no one has tried phlebotomy as a treatment. At this point, I have no idea how to convince any Dr. to do this... I am still investigating how to get tested for hemochromatosis, may have to cough up the money myself. If I can prove that I do have a mutation (unknown at this point), perhaps this would be fodder for phlebotomy...

http://www.hemochromatosisdna.com/disea ... n=__NONE__

I phoned the Canadian blood donor clinic and they said they do not accept blood from people with MS... I would like to suggest a trial of treating people with Primary Progressive MS with phlebotomy... any thoughts out there? Any thoughts of how to get phlebotomies in Canada? Can NDs perform phlebotomies in Canada? Anybody know? Thanks.
User avatar
Merlyn
Family Elder
 
Posts: 601
Joined: Sun Nov 29, 2009 4:00 pm

Advertisement

Postby Apuman » Mon Dec 28, 2009 1:48 pm

While you might consider treatments with hookworms to be a bizzare therapy, you might be interested in my thoughts on how it could relate to CCVIS:

http://www.thisisms.com/ftopict-9463.html
User avatar
Apuman
Family Elder
 
Posts: 103
Joined: Sun Dec 20, 2009 4:00 pm

Postby AlmostClever » Mon Dec 28, 2009 2:54 pm

Merlyn,

I think you are on the right track.

Have you been tested for Hemochromatosis?

I am gonna try to get my tests done next week.

Interesting link on Iron Overload:

http://www.ironoverload.org/brain.html

-A/C
AlmostClever
Family Elder
 
Posts: 366
Joined: Mon Dec 21, 2009 4:00 pm
Location: Houston, TX

Postby AlmostClever » Mon Dec 28, 2009 3:01 pm

Has anyone here with MS been tested for Hemochromatosis?

-A/C
AlmostClever
Family Elder
 
Posts: 366
Joined: Mon Dec 21, 2009 4:00 pm
Location: Houston, TX

Postby AlmostClever » Mon Dec 28, 2009 3:10 pm

Blood test diagnosis method:

http://www.ironoverload.org/diagnosis.html
AlmostClever
Family Elder
 
Posts: 366
Joined: Mon Dec 21, 2009 4:00 pm
Location: Houston, TX

Postby lyndacarol » Mon Dec 28, 2009 3:17 pm

Merlyn--

Check out this earlier discussion:

http://www.thisisms.com/ftopic-4716-previous.html

Can blood donation policy be so completely different in Canada and US?!!!
User avatar
lyndacarol
Family Elder
 
Posts: 2313
Joined: Thu Dec 22, 2005 4:00 pm

Postby Merlyn » Mon Dec 28, 2009 4:06 pm

I phoned the blood donor clinic in Victoria this morning, I am not sure that the Red Cross of Canada even accepts blood anymore because of the whole hepatitis C/hemophiliac debacle. Anyway, the clinic said that they do not accept blood from people with MS. So that route is out.

I am going to go ahead and order a cheek swab for hemochromatosis from this company

http://www.hemochromatosisdna.com/index ... n=__NONE__

I can't really afford it but my progression has kicked up big-time since menopause (the cessation of bleeding/iron loss???)... by the time I convince my family physician to pursue this line, it will be three or four months down the road, so I am going to try this test and if it comes back showing genetic mutation for hemochromatosis, perhaps then I will be able to convince somebody somewhere that I need a good series of phlebotomies... if they can get my thick blood out of me!
User avatar
Merlyn
Family Elder
 
Posts: 601
Joined: Sun Nov 29, 2009 4:00 pm

Postby paulmur » Mon Dec 28, 2009 6:53 pm

For what it is worth, I was diagnosed with HH within 6 months of my first and only MS exacerbation. I had both genes and a ferritin level of 1500. Normal ferritin level is about 50. I've continued doing phlebs for the last year and now have it down to about 400. I don't know what effect it's had on my MS symptoms, which I experience daily. I told all my docs, including my HH and MS doc that I just thought one must have SOME relationship with the other. Oddly enough, it was my GP and ENT that agreed. LOL. Hemachromatosis is not normally tested for in the average physical. If you are of the primary ethinicity I think it would be wise to have the tests regardless of any clinical association of MS and HH. HH can be very damaging. The sooner you treat it the better.
Mine was discovered by an astute GP when I had an elevated liver enzyme in a routine blood test. Other doctors had seen it, but wrote it off as "we'd better just keep an eye on it". Ironically the doc who discovered it was Asian. Hey, when you're right you are right!

Good Luck to all of us!
User avatar
paulmur
Family Member
 
Posts: 52
Joined: Thu Mar 13, 2008 4:00 pm

Postby Sawdoggie » Tue Dec 29, 2009 9:07 am

I was diagnosed with HH about 12 years ago and had an initial round of phlebotomy and am going through an additional round right now as my numbers have crept back up (I got a little behind on the maintanence). I found CCSVI through research I was doing looking for an iron connection to MS. I had my one and only MS attack last spring when coincidentally my ferritin count was up. The gastroentrologist that I see for the HH asked whether out loud if phlebotomy had ever been considered as a treatment of MS after reading the articles that I had sent to him (he has shown a lot of interest in this even though MS is not his specialty). My intial thoughts that I was tracking down on an iron and MS connection are as follows. These are general threads or ideas I was and am still looking into and are not meant to be "facts":

1) The fatigue and fogginess that brought me to the doctor 12 years ago were possibly the first signs of MS (I have a number of lesions and have probably had it fairly asymptomatically for years)
2) The phlebotomy regimen (1 unit every 2 weeks for 2 years) reduced my iron levels to almost nothing (actually became anemic) and brought the inflammation down causing me to feel better
3) Iron levels have crept back up causing the latest incident as I have not been as vigilant (two kids, family, company… time flies by) as I should have been.
4) Hemochromotosis by itself isn’t enough to trigger MS, it needs an extra push to elevate the brain accumulation iron specifically (otherwise most with HH would have MS).
5) This could explain why statistically women with MS generally have a more benign course of MS compared to men at least until menopause as they are phlebotomized naturally, monthly and also why MS tends to fade during pregnancy and lactation.
6) In men, maybe MS is masked by undiagnosed hemochromatosis (i.e. they die of a heart attack prior to being diagnosed with MS) and the numbers of men and women with MS are more similar than represented by CDMS rates.
7) Men, if diagnosed later in life have a statisticaly worse prognosis (not sure where I read this but I remeber reading it somewhere). This would be consistent as the iron load would be much higher once the autoimmune cascade begins.
User avatar
Sawdoggie
Family Member
 
Posts: 63
Joined: Mon Sep 07, 2009 3:00 pm
Location: Cincinnati, OH

Postby Merlyn » Tue Dec 29, 2009 12:41 pm

Thanks very much for all of the input on hemochromatosis. My ferritin level was only 66, but we did not test beyond that, and I understand that in some cases, ferritin will be fairly normal, it will be the transferrin level that will be over 45 or 55%... maybe this is all a shot in the dark for me, but I am of Irish background. So many of the symptoms seem to overlap, but the observation that not everyone with hemochromatosis develops MS is insightful. However, from what I've been reading, they are discovering new mutations and it seems we do not fully understand what they all mean, some cause iron overload in childhood...

I read once a long time ago, and now I can't find it, that the level of antioxidants in your system determines iron storage... if you don't have hemochromatosis that is.

One of the things I wonder about in my case is that I had hundreds of pinpoint lesions, not just a couple of larger lesions. I did not react well to the one and only MRI that I had in 1992, and have not had subsequent pictures taken. After my MRI in 1992, I found my walking coordination never recovered... my gait remained wonky afterward and never corrected. What do these magnetic fields do to all that iron in the brain?
User avatar
Merlyn
Family Elder
 
Posts: 601
Joined: Sun Nov 29, 2009 4:00 pm

Postby shye » Fri Jan 01, 2010 4:25 pm

Palmur-
Which liver enzyme was the elevated one? My last three blood tests have shown just one elevated (ast)--we are assuming it is because of not enough B6 (I seem to have a genetic need for more of it, and elevated AST alone could be because of B6 deficiency)--but coud it also indicate hemachromatosis?

Thanks...
User avatar
shye
Family Elder
 
Posts: 758
Joined: Sun Nov 29, 2009 4:00 pm
Location: NYC

Postby shye » Fri Jan 01, 2010 4:29 pm

Merly,
good thought on MRI and its effect on the iron accumulation--I have been trying to find info on this--if do, I'll post it.
BUT did you get gadolinium contrast with MRI? That could be source of your problem. Lots on internet on the negatives of this contrast.
User avatar
shye
Family Elder
 
Posts: 758
Joined: Sun Nov 29, 2009 4:00 pm
Location: NYC

iron problems

Postby mangio » Fri Jan 01, 2010 6:05 pm

Merlyn,

I would like to add some thoughts to the iron issues being discussed.
Ferroportin, fraxatin, melanotransferrin - protein 97, divalent proteins
that transport iron from food sources in the small intestine and iron sulfur clusters on Sod 2 all could also be involved in neurodegeneration and ms.
Any combination or single one of these mutated, will cause problems or disease. Freidicks Ataxia, respiratory diseases of the mitochondria, alzheimers and probably many more unknown at this time.

You may enjoy learning about the melanocytes cells of the brain and
possible connections to brain degeneration diseases as they make
up large parts of the areas being actively researched - basal ganglia, thalamus and venous system among others.
And recently and most surprisingly found in the heart
atriums controlling somehow parts of calcium signalling and fibrillations.

I will be posting some key researchers work in days to come, that I
believe have some relevance to the thoughts on the iron discussion. Any queries please post back.


thanks mangio
User avatar
mangio
Family Elder
 
Posts: 288
Joined: Thu Dec 31, 2009 4:00 pm

Postby Bethr » Sat Jan 02, 2010 1:51 pm

Thanks Sawdoggie, I'm new here and I'm looking for info on iron overload and MS. I also had high iron levels before my first attack, it was the only thing that showed up on my tests when I went to the doctor because of increasing fatigue periods. My doctor asked if I drank (I don't) and pushed the high iron result aside. Hemochromatosis has just been found in my extended family, a first cousin.

I had extreme fatigue to start with, I would have it for a week and then it would subside. I had my first MS attack four weeks after going to the doctor to sort out the fatigue. It had been building up for years.

Since I've been monitoring my fatigue I realised that as soon as I menstruated the fatigue diminished for a few weeks. I'm now at the point where I spend 10 days with energy and 18 days having afternoon sleeps.

I'm 47 years old, and my periods are slowly getting weaker. As this happens my fatigue gets worse.

My older sister also has had MS for 20 years, and developed it much earlier than I did, at about 30yrs. She hadn't had a decent period for years and she was quite ill with the MS. She suddenly just got her periods back this year after 15 years of very little and she is hardly sleeping during the day at all at the moment, and having a great time of it.

My brother has chirosis (sp?) of the liver, he's only 51, they blamed it on drinking, but I don't think he drank more than anybody else, certainly not an alcoholic.

I'm off to the doctor this week to get my iron levels done again after two years absence. It will be interesting to see if my iron levels have gone up in conjunction with my extending periods of fatigue. I plan to be genetically tested for hemochromatosis also and if positive I can pass the valuable info onto my brother (and sister) to be tested also. It could save his life if it's not too late already.

I don't fancy having blood drawn, but if it makes me feel a bit more alive and awake again then I'll do whatever I need to.

Not many women look forward to menstruation, I sure do!
User avatar
Bethr
Family Elder
 
Posts: 475
Joined: Sun Dec 27, 2009 4:00 pm

Postby paulmur » Sat Jan 02, 2010 8:23 pm

shye , at the risk of sounding ill-informed I can't name the particular liver enzyme that appeared elevated. It was only one though. I can say that they asked me how much I drank.

I do think it important for anyone suspecting it to get the tests done. Both the DNA and ferritin levels. It's easy to deal with when you catch it before it's done any damage.

I know that there is about 0 amount of evidence linking HH to MS but as my ferritin levels go down, I'll be monitoring my MS symptoms along with it.
User avatar
paulmur
Family Member
 
Posts: 52
Joined: Thu Mar 13, 2008 4:00 pm

Next

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

cron