Phlebotomy anyone?

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

Postby shye » Sun Jan 03, 2010 3:14 pm

Thanks Paulmur-
and yes, alcohol is the first thing they always suspect with raised liver enzymes, but it doesn't raise just one, it raises several.
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Postby Bethr » Mon Jan 04, 2010 7:55 pm

I just got back from the doctor. First time I've seen her since I was diagnosed with MS 18 months ago. While there I grabbed a copy of my iron tests I had taken 18 months ago four weeks before I had my first MS attack and my serum ferritin saturation was 62% prior, rather high, and my ferritin was 175 which is also slightly elevated. My iron was normal and my ICP was normal.
Off to be genetically tested for hemochromatosis tomorrow and to get fresh iron tests.
Will let you iron watchers know how I get on. My fatigue is so bad now I really need a few answers.
Is it the iron, or the MS? What came first, the chicken or the egg? LOL.
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Postby Bethr » Sat Jan 09, 2010 3:02 am

AlmostClever wrote:Has anyone here with MS been tested for Hemochromatosis?

-A/C


I got my results today. Positive for the H282Y heterozygous.
One gene only. I am still slightly over the recommended iron saturation at 51% (was 62% 18 months ago). Ferritin is now within the range at 125.

I've felt great since I had my blood tests taken on Tuesday. No daytime sleeps at all!!!!! If taking 100mls of blood makes me feel that good, I've got to go for it, phlebotomy I mean. I also feel a lot better from the day I start menstruating, it lasts about 7-10 days and then the fatigue kicks back and builds up till the next menstruation. Making my body produce itself some new blood seems to be my key. Where are those leaches :P
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Postby Merlyn » Sat Jan 09, 2010 4:38 pm

I would really like to see a clinical trial doing phlebotomy as a treatment for MS... if doctors don't agree that maybe they should be tried, I can see Secret Phlebotomy Societies coming into being... house parties! Underground meetings with butterfly needles...
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TWO AMAZING LINKS YOU SHOULD CHECK OUT

Postby Hemie » Fri Jan 15, 2010 3:46 pm

Unfortunately I could not find them directly, but if you go to Marie Warder"s website, www.dromedarisbooks.com and then go to the BRONZE KILLER page, you can watch two riveting YouTube items.

I'll try this: www.dromedarisbooks.com
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Postby Merlyn » Mon Jan 18, 2010 12:22 pm

Aargh matey... how frustrating that they won't let people with MS in Canada donate blood. I know this is what I need to do. I am still waiting for my hemochromatosis test. I phoned the lab this morning in frustration, even though their website states the results take 7 to 14 days. They received my sample January 7. The customer service there is very good, quick response. He checked with the lab and told me that it would take the 14 days to get the results, that they have to run the test twice. So it will be Friday before I find out whether I have one or two genetic mutations. I am just really sure that this is one of the keys, mainly because my progression has gotten out of control since menopause. My spasticity has increased tenfold in a very short time and my hand function is getting to be nil. The knuckle on my left thumb is swollen and that thumb stays crooked and my shoulder joints are aching unbelievably. This is all happening very very quickly compared to the rate of previous progression. The only explanation as to be increasing iron overload... if I am wrong, I am toast... I figure I would have about another year before I was totally incapacitated/paralyzed.

That is why the Internet is a wonderful resource. You know, I have probably seen eight neurologists, about 50 doctors, about 14 naturopathic doctors and spent $80,000 above and beyond insurance trying to figure out what the heck was causing this crap. There is no MS in my family as far back as we could trace, but there are histories of multiple inexplicable health problems that look suspiciously like hemochromatosis or iron overload. I am trying to find a study that I saw a long time ago about polycythemia (too many red blood cells make the blood thick) and how phlebotomy relieves the spasticity associated with this condition. So it does not surprise me Behr, that you are feeling more flexible. The blood is known to be problem in MS... well we need is for a few more people to donate blood if they can and report on the outcome. I would if I could. I believe that about 250 mg of iron is removed in 500 mL of blood. If one has hemochromatosis, you might have 40 to 50 g of iron stored in your body versus about 3 mg for the ordinary person. So it is very heartening to hear that even getting rid of 250 mg can result in such improvement! I cannot wait, and I mean that literally, I am running out of time. I will keep people updated also about my test results.
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Postby Bethr » Tue Jan 19, 2010 5:07 pm

Hi Merlyn, I think you are on to it.
I'm on day 7 since the phlebotomy and I'm feeling absolutely wonderful. i have all the energy in the world. My knees and hips are totally fluid now, no stiffness at all. After the phleb the stiffness moved from knees/hips to my back on second day, out of my back and into my arms the third day. Now I'm pretty good all over. Had weird little short "zzzitsss" of pain alternately on both sides of my head also, just for short periods, very strange, never felt those before. They have just about gone now, maybe one or two a day.

My older sister who is the long term sufferer of MS in our family has just got her gene test back. She is the same as me, Heterozygous for the H282Y gene. She's booking in for a blood donation today. I just hope it makes her feel as good as mine has.
She's persuing this as much as I am. Amazingly when we thought back to our childhood and the iron question, she remembered in her teens being shot up with iron injections in her backside. We need to get her medical records to see whether she really was anemic. With HH you can be iron-loaded and anemic at the same time, it happens.

I'd hate to think that those injections made her get MS early and me much later at 45 years once I overloaded, but who knows. Every time i think of how I've suffered over the past few years with the sleeping and fatigue I cry. The answer for me was so easy. I'm sort of alternating between happy and angry!!!!
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Postby Merlyn » Wed Jan 20, 2010 11:45 am

I am sending you the biggest cyber hug ever. You cannot imagine how thrilled I am that you have preceded me with the phlebotomy and that you are having those kind of results. I had practically given up hope, because my deterioration since menopause has been phenomenal and very very depressing. And the weird thing is that I have been studying metal chelation for years! I tested very very poisoned in mercury many years ago and have tried every form of chelation on the market except EDTA IV because EDTA does not chelate mercury very well and I was afraid of doing IVs because I had done glutathione IVs and had a very bad reaction, more neurological damage from it. But I can list every chelator that I have ever tried, none of which worked, but each time I would do it I would have certain reactions that would verify that my problem had to be metal overload. What you are describing is metals moving around... metals coming out of joints, metals coming out of storage sites... they tend to hurt as they come out, they tend to cause little nervous tics and twitches. I am surprised however by the brain reaction, because I would not expect the phlebotomy to move metals out of the brain, but what you are describing is definitely metal removal. The only time I've ever had those brain feelings during chelation was when I did alpha lipoic acid, which is both lipid and water soluble so that it crosses the blood brain barrier. Unfortunately, ALA gives me incredible anxiety and nightmares, so I gave up on it anyway. The whole thought that you can get garbage out of the brain by doing phlebotomy is astounding. I am hoping it will remove the remnants of Myodil, which I still have in my central nervous system because I had a myleogram back in 1983... long story, but they were looking for a spinal cord tumor, when my first symptoms of MS was Lhermette syndrome. That oil is still in my central nervous system, because the spinal system is a closed system and normally it is very hard to get anything out of it... so maybe the phlebotomy will move all kinds of toxins out.

I should be getting the results of my test for hemochromatosis either tomorrow or Friday and I will let you know the results, but I am virtually certain I have at least one genetic mutation if not two. Also, what is concerning me is that this may be the answer for everyone. I don't understand why they are not testing for hemochromatosis before they are doing the surgery. Because if you have hemochromatosis, you will keep collecting iron and the vein clogging will recur. Zamboni was a vascular surgeon, and when you are a hammer, everything looks like a nail. This solution may not be the right solution... I don't know that for sure of course, but personally I would rather do a series of phlebotomies and see how I feel rather than putting stents in my veins... this is so hopeful, I have a friend that is now an adult care home with a baclofen pump in her spine, and she too has a Celtic background like everybody else I ask with MS. Like me, she is feeling no hope for ever regaining mobility. But the body has an amazing ability to heal if you get rid of the root cause of dysfunction.

I was also anemic as a teenager and in my early 20s. It was probably iron loading anemia rather than a lack of iron. There is a person on the adult chelation list that is now so sick from iron injections she cannot function... overwhelming fatigue and joint pain. I'm sorry, but I get so fed up with idiotic doctors that do not understand how devastating metals are. All heavy metals, including iron because it is a heavy metal especially in an overload condition, do much the same thing. They shut down the liver detox pathways, they make you resistant to insulin, they change the body pH, they displace nutrient elements, they interfere with neurotransmitter production, they interfere with enzymes, they interfere with osteoblast production so that you end up with osteoporosis... the list goes on and on and on. But truthfully, iron was not on my radar, I have been concentrating on mercury and wondering why the hell I could never get rid of it. My guess is that the iron came first, or mercury and iron in combination is more damaging than each alone. That is the case usually with mercury and lead combined...

I may have a hard time convincing a doctor to instigate phlebotomy, I will have to see once I get the genetic mutation test. If you don't mind, I would print out your testimony when I get my test. My Dr. is Irish, right from Ireland, and he didn't know about the Irish connection in hemochromatosis! It's unreal, it is the most common genetic mutation out there, and the bloody doctors are ignorant. Marie Warder was simply brilliant, and has much the same frustrations, that they don't test. Like you, I imagine I will feel angry. I have been in such pain, and my life was devastated by this, completely devastated. All my hopes and dreams have been shattered, and life has been mere existence. The isolation of not being able to participate in life has been death by inches. So I know where you're coming from, boy do I ever. I cannot thank you enough for going out and doing a blood donation and then reporting on it. It's like you are giving me the gift of mental health! I will report as soon as I get my test back. Your poor sister, the whole thought of iron injections is so crazy and they are still doing it! But what do you expect, doctors told my mother when she was suffering from depression back in the 1960s to take up smoking, that it would calm her nerves. Doctors are the fourth leading cause of death in the United States. They just about killed me with their MS investigations, until I said no more.
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Postby Bethr » Wed Jan 20, 2010 12:29 pm

I've got my fingers crossed for you Merlyn. Have you had Iron studies done, especially transferrin saturation and ferritin levels?
That was my major clue and set me on the path. My doctor would have left me like I was. She still says I'm not overloaded.
I think I may have a fight to get phlebotomies too. I can give blood four times a year and just hope that will suffice.

The criteria for iron overload appears to me to be too high, it's Tranferrin saturation greater than >45% and ferritin >200 for menstruating women. I got to Tranferrin sat 62%, ferritin 175, 18 months ago, got a brain lesion (lost use of right hand) and also showed epilepsy on my EEG on both sides of the brain. The doctor dismissed the EEG as "clinically unlikely" but warrants further investgation. He never did any, and stated I must have been asleep (I wasn't) :x :? .

The sensations I got for a few days after phleb were indeed weird, chest fluttering and electric feelings also, I felt nervy and hyperactive, a tight band around chest when I went to bed. All gone now thank goodness.

I reckon I picked up on this because I'm a blank slate, I never take anything into my body, no drugs, no medications, no vitamins, never taken iron, really healthy in all ways except the lesion and sleeping/fatigue. I never tried any medication for the MS, I knew from my sisters decades of it, that it was silly to fight the fatigue, as it was part of it. My sister never got any better until she gave up on all the fad diets, intraveneous Vitamin C (eeeek!!) etc etc. She has been feeling better lately, a bit more energetic, but then again she just started menstruating again (54 yrs old!) after decades of none. That would certainly help. She said she's been bleeding heavily for 3 cycles now. A phleb on top of that might make the world of difference. I'll keep you updated.

Cheers
Beth
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Postby shye » Wed Jan 20, 2010 1:11 pm

again Bethr, so happy for you! :D
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Postby shye » Wed Jan 20, 2010 1:22 pm

Merlyn,
If you get a positive test on the Genetic testing, wouldn't that be enough to get approval for bloodletting? Although on second thought, that might be enough ONLY if blood level high--might be hard to find someone who could see the quite valid reason to do it no matter what.

Any chance you could pay someone qualified to do it? Say a private duty nurse or similar?

I don't know if there are restictions here in the US, but I know the hospitals around here (and in NYC thre are MANY) often advertise for people to come in to donate blood when their supplies are low. Clearly HIV HEP C etc would rule one out, but I never heard of an MS restriction here. Would it be worth it, and are you up to, to make a quick trip across the border to donate? (pretty similar rules across the States I think)--I suppose you could say you are visiting someone long term here--but who knows with all the crazy world restrictions we now have to live with.
Anyway, let us know your results, and all best wishes!
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Postby Bethr » Wed Jan 20, 2010 2:35 pm

Thats right Shye. They don't recognise iron overload until you are over the recommended limits. I believe some people feel the effect of iron at lower limits. The proof is in the pudding, it worked for me and didn't quite meet their criteria, but only slightly.
Iron overload is a new thing, the gene discovery is new and many doctors have no experience with it. The hemochromatosis organisations are currently fighting to get these levels lowered and also to get doctors to accept that you can be affected by overload, ie: arthritis and fatigue long before your liver packs up. They use the liver as the measurement.
Men tend more towards liver problems, therefore women are highly undiagnosed for iron overload. They seem to think menstruating negates it. One in seven people of scottish decent are carriers of the H282Y, like me, 1 in three in Ireland have it. Where is MS very prevalent?

My results are miraculous! Like I said, the proof is in the pudding.
Now I just have to work out how long a blood take of 470mls lasts, and make sure I never go back to the sleeping couch again!
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Postby Merlyn » Thu Jan 21, 2010 11:49 am

Reference ranges are totally ridiculous. I ran into this with the thyroid laboratory results... reference ranges are so broad, that you can be half dead and still be considered okay because you are in the spectrum. Marie Warder on her blog says she needs to be around 15 for ferritin in order to feel proper. I doubt they can determine what your total body burden is of iron, the same way they cannot determine your total body burden of say Mercury or cadmium or lead... how much have you packed away in storage sites? They cannot possibly know. If you have hemochromatosis, they advise you keep the ferritin somewhere between 25-50, so what does that tell you? The reference ranges are ridiculous. Ferritin of 175 is in all probability too high... according to Marie Warder, transferrin should never be greater than 45%. My conclusion about this whole thing is that they don't know what a healthy level is for any given individual. I am supposed to get my results today, they are not in my inbox, and I am about to make a phone call to see what is up. From my readings, you will need a level of 12 (ferritin) to prevent anemia. That is pretty low on the scale... when I was anemic when I was younger, I had more energy than anybody...
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Postby jimmylegs » Thu Jan 21, 2010 1:10 pm

units please!
conversion fyi: Ferritin ng/mL 2.247 pmol/L

i agree 200% about reference ranges being crap.

when you have chronic illness you can have ferritin readings come back higher than they actually are, without having haemochromatosis. 'anemia of chronic disease'

Molecular pathogenesis of anemia of chronic disease
Most patients suffering from chronic infections, chronic inflammatory diseases, and some malignancies develop a mild to moderate anemia designated anemia of chronic disease or anemia of inflammation. Patients with this anemia have low serum iron, low to normal transferrin, and high to normal serum ferritin concentration. The anemia is caused by increased inflammatory cytokines, especially IL-6, inducing increased production of the iron-regulatory hormone hepcidin by hepatocytes. Hepcidin blocks the release of iron from macrophages, hepatocytes, and enterocytes, causing the characteristic hypoferremia associated with this anemia and iron-deprivation of the developing erythrocytes


personally i tend to the low end on the ferritin results.. my last one was improved, i'm at 91 on a scale of 10-291, i am ASSUMING that's in pmol/L but not 100% sure because the printout from life labs does not say..
anyway that's up from 82 in 2007 (at that time the scale according to my lab was 51-140, apparently a few extremists have weighed in since then)

i have an iron level kicking around somewhere but i seem to be missing a page of results out of my file, if i find it i'll relay

interesting abstract:
Chronic disorders are frequently accompanied by impairment of iron metabolism2. There are various blood tests that can be done to elucidate iron deficiency in RA, including serum ferritin, mean corpuscular volume (MCV), and serum transferrin receptor levels, as reviewed by Swaak. The serum ferritin level is not a reliable indicator of iron deficiency, as it is an acute phase reactant and the level may be elevated in RA. MCV can also be affected by the second-line treatment for RA (e.g., azathioprine, salazopyrin, methotrexate), which can increase the MCV. Coexisting morbidity (e.g., hypothyroidism, B12, folate deficiency, and alcohol abuse) could also influence results.

The use of ZPP level in blood to diagnose iron deficiency anemia in RA has received limited attention. Red cell precursors normally synthesize slightly more protoporphyrin than is needed for heme synthesis. The excess remains with the cell throughout its lifespan and has been called free erythrocyte protoporphyrin (FEP). When iron is not available for heme synthesis protoporphyrin accumulates in excess as zinc protoporphyrin. The level of FEP increases dramatically in iron deficiency and is a sensitive laboratory abnormality2.

The ZPP determination is simple and also appears to provide a sensitive index of iron-deficient erythropoiesis3. Currently it is used to differentiate between iron deficiency, beta thalassemia, and lead poisoning4. ZPP level is also used as a screening tool for iron deficiency anemia in hospitalized patients5.

ZPP levels are elevated in iron-deficient erythropoiesis, which can be associated with iron deficiency and anemia of chronic diseases


not sure how this would pan out in ms-ers, who tend to be lower in zinc than healthy controls (and therefor low in uric acid)
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Postby Merlyn » Thu Jan 21, 2010 4:56 pm

Well, I think I agree with Bethr, empirical results and all that. If donating or receiving phlebotomy helps the fatigue and joints, then why not? Half the drugs out there can't accomplish that. Also, I don't always trust lab results and testing for any given individual. If iron gets stored in nervous tissue, how in the world do you measure that? Or the potential damage that even a small amount can do? Also, I don't know what iron does combined with aluminum for instance, does anyone? The more heavy metals you accumulate, the worse off usually you are, and if you have a genetic mutation in the DNA, one can suppose there is iron loading to some level. Zinc can be low because of high iron or higher levels of mercury or lead or celiac disease, it can be low for a myriad of reasons. It can be low because you don't have enough histidine. What I am trying to say is if one has genetic mutation, my guess is the lower the levels of iron/stored iron the better. Making sure that you are not hypothyroid... because if you are, you are likely to be anemic.
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