Phlebotomy anyone?

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

Postby jimmylegs » Wed Feb 03, 2010 5:43 am

i second that, shye!
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Postby ForeverSpring » Wed Feb 03, 2010 5:52 am

Beth, I am glad that you have found some relief. :)

I have been on LDN for over 5 years. It seems to balance the immune system to make it operate the way it should, and I have been doing well on it. However, it is the only drug that I take for anything, and I would really prefer not to.

Two weeks ago, I tried again to skip a day or two here and there, which seemed fine. Then last week I stopped it altogether to see what would happen. Wow! My immune system went chaotic over I know not what! Joint pains everywhere, aching muscles, super fatigue and sleepiness, sneezing and congestion. I actually slept during the daytime on some of those days. And headache, fairly constant.

At the end of that week, I had had enough, and started the LDN again. All the symptoms vanished immedately, except for mild headache.

That experience, combined with the forum threads about iron overload and hemochromatosis, is what prompted me to seek the testing. I now suspect that iron overload is responsible for my years of immune problems.

What is puzzling to me is that it has been known for years that people with MS have iron deposits in their brains, yet we are not routinely tested for iron overload. Why is it not standard protocol? :?

The doctor who ordered the tests said, “There have been no scientific studies that show that phlebotomy is helpful for MS.” However, he seems intrigued by the idea and quite open to it.

I am still hoping to eventually get off the LDN and be drug-free again.

Oh, one more thing . . . shortly before my last big MS flare, my iron level was very high. It was the only item that was out of range, and was not investigated more closely.

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Postby jimmylegs » Wed Feb 03, 2010 6:09 am

FS, that's good that you are keeping track of this. my iron has always been more in the low end. chronic inflammatory illness can make iron levels seem higher on test results, than they actually are. 'anemia of chronic disease'. kind of sounds like maybe it was a reason to investigate further using some different indicators. i find the patient has to drive the inquiry when it comes to this stuff. it sucks, but at least some of us are good to take it on when needed.

so, what exactly does LDN do, is it linked to iron status somehow?

have you ever had a zinc level done? vitamin A? copper? there are a few things that could be contributing to, and a few things suffering from high iron status.
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Postby ForeverSpring » Wed Feb 03, 2010 6:59 am

Jimmylegs, I agree that the patient has to drive the inquiry. If we do not take the responsibility for our own health, nobody else will! :)

Funny, my earliest recollection of high-iron was when I was about 9 or 10 years old. Every time that I went to the dentist, he would comment, “You have a lot of iron in your system,” as he was scraping my teeth. :? (Dentists themselves did the cleaning back then.) How did he know? He must have seen something.

It has been several years since any extensive tests for minerals and the like. Everything is so delicately balanced in the body that one element out of line will affect so many other things.

I don’t think that LDN has been linked specifically to iron status. Here is a review of how LDN works:
http://www.lowdosenaltrexone.org/index. ... naltrexone

I have never used any other drug for MS, because they seemed to me to be worse than the MS itself. LDN is relatively mild in comparison, and works with the body’s immune system, rather than against it. I have had immune problems since childhood, and the LDN has been a great help from the first dose.

The immune system will react to anything in the body that should not be there. That is its job. I suspect that I have iron deposits in my brain, where they should not be, which are activating my immune system. Just a hypothesis at this point, and I will probably never know for sure. Maybe someone will find it during my autopsy! :)

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Postby shye » Wed Feb 03, 2010 7:02 am

Interesting Jimmylegs,
my recent iron testing (not fasting) had low TIBC--explained away because of my chronic liver damage. I wonder. And my other three iron parameters were at the low end of normal, not the high.

So I too am getting new tests--have the script, just need to arrange the time for the fasting test. Soon for sure.
Sure would be nice if that is the answer to the chronic fatigue.

Again, I think iron dysregulation, not just hemachromatosis....


and Jimmylegs, yes, some of us are now aware it is up to us to research and go for the results we are looking for, BUT it has taken years of messng with an inept medical establishment that has brought us to this awareness--a long, hard struggle for most of us.
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Postby ForeverSpring » Wed Feb 03, 2010 8:40 am

This morning I phoned the clinic to inquire about the possibility of doing the phlebotomies there, and they can do so! It is only about a mile from my home. I am very happy! :D

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Postby Bethr » Wed Feb 03, 2010 11:26 am

I'm still hot on the porphyria/hemochromatosis genes link.
If you have just one hemochromatosis gene and one porphyria gene, say PCT (there are many different kinds of porphyria), you get a disregulation of iron, and you will overload with just the one HH gene. In the South African strain of porphyria (which has similar symptoms to MS and has been traced back to two immigrants from Scotland I believe), they have a shortage of iron, and if given iron they come right.

So it is a disregulation of the iron metabolism that seems to be the problem. Too much or too little can cause the symptoms.

The heart arythmia I am getting is totally new to me. It appeared when I gave the blood donation. I believe this is iron overload related. Sometimes my heart jumps just once and I'm almost thrown into an upright position if I am lying down. This has happened twice in the last few weeks. Usually it's just like butterfly's flitting around, a rather electric feeling.

But I'd rather have the heart symptoms, than the fatigue/sleeping symptoms :lol:

Porphyria can be a very silent affliction apparently. Only a few people with the gene actually show any sign of it. So it is more common than most doctors think.

I've looked into getting my genes checked, but it looks expensive. Hopefully the specialist will do this for me on the public health system

Funny thing with the mention of vampires.... They believe that myth of vampires and werewolves stems from people with porphyria.

Look up Wikipedia for "porphyria" and head to the history at the bottom of the page 8O

An attack of porphyria can stem from being in the sun, and excess hair growth can result. It can attack the gums, receding them to show "fangs". Yikes! My gums are in a hell of a mess and are receding, my dentist seems to think I'm not cleaning my teeth properly. I'm not doing anything differently, and I have great teeth.
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Postby jimmylegs » Wed Feb 03, 2010 11:37 am

great news, FS. check this out:
Chromogenic bacteria cause stains, typically at the gingival margin of the tooth. The most common is a black stain caused by Actinomyces species. The stain is composed of ferric sulfide and is formed by the reaction between hydrogen sulfide produced by bacterial action and iron in the saliva and gingival exudates.

shye what's up with your liver, may i ask? why's it damaged? right off the bat i thought 'liver need zinc!' lol but instead i searched 'low tibc nutrition deficiency' and got a couple things:

Nutritional deficiencies and blunted erythropoietin response as causes of the Amemia of critical illness*††
Journal of Critical Care, Volume 16, Issue 1, Pages 36-41
Purpose The purpose of this article was to determine the prevalence of iron, vitamin B12, and folate deficiency and to evaluate the erythropoietin (EPO) response to anemia in a cohort of long-term intensive care unit (ICU) patients.
Materials and Methods: All patients admitted to three academic medical center multidisciplinary ICUs were screened for eligibility into a randomized trial of EPO for the treatment of ICU anemia. On their second or third ICU day, patients enrolled in this trial had EPO levels drawn and were screened for iron, B12, and folate deficiency. Weekly EPO levels were obtained throughout patients' ICU stay.
Results: A total of 184 patients were screened for iron, B12, and folate deficiency. Sixteen patients (9%) were iron deficient by study criteria, 4 (2%) were B12 deficient, and 4 (2%) were folate deficient. Mean hemoglobin and reticulocyte percents of the remaining 160 patients were 10.3±1.2 g/dL and 1.66±1.09%, respectively. In most patients, serum iron and total iron binding capacity levels were very low, whereas ferritin levels were very high. Mean and median day 2 EPO levels were 35.2±35.6 mIU/mL and 22.7 mIU/mL, respectively (normal=4.2–27.8). Serial EPO levels in most persistently anemic patients remained within the normal range.
Conclusions In this cohort, screening for iron, B12, and folate deficiency identified potentially correctable abnormalities in more than 13% of patients and should be considered in those who are anticipated to have long ICU stays. Even at an early point of critical illness, most patients had iron studies consistent with anemia of chronic disease (ACD), as well as a blunted EPO response that may contribute to this ACD-like anemia of critical illness.
The objective of our study was to investigate zinc (Zn) status and the effects of Zn supplementation in relation to iron deficiency anemia in middle-aged women. It is important to define the role of Zn in hematologic abnormalities and to determine the frequency of Zn deficiency.
Methods: Fifty-two Japanese women, selected from a health examination survey on 6200 women, had hemoglobin concentrations below 12.0 g/dl, total iron binding capacity (TIBC) below 390 µg/dl and fairly normocytemia. These 52 were divided into three groups and we then compared the hematological status before and after iron (group A) or Zn (group B) or iron plus Zn (group C) supplementation.
Results: After treatment, concentrations of hemoglobin (Hb) increased slightly in groups A and B, but not statistically significant. In group C, Hb levels were significantly increased from 10.8±1.1 to 12.8±1.1 g/dl. Furthermore, numbers of RBC and reticulocytes, and concentrations of albumin were also increased significantly. Increased values over 1.0 g/dl of hemoglobin levels were noted in four women (26.6%) in group A, three women (14.2%) in group B and 13 women (81.2%) in group C.
Conclusion: Zn status to some extent can account for hematological abnormalities in middle-aged women. At least 5.0% of middle-aged Japanese women may have Zn deficiency. Normocytic anemia with low TIBC levels may serve as a good indicator of a marginal Zn deficiency.
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Postby Merlyn » Wed Feb 03, 2010 12:48 pm

The speculations on iron being either high or low in MS is very interesting... and I am wondering about iron metabolism differences in the different types of MS. I am Primary Progressive, never had an attack of course... and I am speculating whether this form of MS is just a slow steady accumulation of iron, and a much lower rate. I am finding it interesting that people with the relapsing remitting form seem to have higher levels of iron... I have never had alarming rates of ferritin, nowhere near... I like I say my last ferritin test was 66. 10 years ago it was 88, but my transferrin was never tested, so I have nothing to compare. In my teens and 20s I was anemic, but I don't know now whether this was iron loading anemia, but it does seem likely. I was also extremely hypothyroid by the time I was in my 30s... iron loading in the thyroid? I doubt I will ever figure out totally what exactly has happened in my body.

I would also like to emphasize however, that there is no way on earth that anyone can tell you how much iron you have stored in your organs are in your bones or in your brain... there is no way that they can measure total body burden of metals, any metal... most metals do not stay in the bloodstream... even with hemochromatosis, there will only be 250 mg of blood per 500 mL, the blood cannot contain loads of extra iron, that is physiologically impossible... everybody's blood is going to contain about the same amount of iron, and if we have been "iron loading", that extra iron is going to be secreted into the organs/bones/CNS... but there is no way on earth any person or any Dr. will be able to tell you what quantity has been stored... whether it is 5 g for 10 g or 50 g..... with hemochromatosis you just have to keep giving blood until the numbers normalize, until the ferritin goes down to what 9? But at the outset nobody can tell you just how long it will take to get down to those numbers, because they don't know how much anybody have stored in heart muscle, or the pancreas, or the thyroid, etc. etc. etc.

This is why running trial phlebotomies makes so much sense. If people like me, Primary Progressive types have simply been storing iron for decades, but not so much in the liver, we are going to still have potentially very large amounts of iron put for a rainy day! If one has a genetic mutation for hemochromatosis, which causes iron deregulation, the body has to put all of that iron somewhere, because it cannot stay in the blood. Nobody in the whole world is going to be able to tell you exactly where it has been deposited. It is the same with any heavy metal, they cannot determine what your body burden is! I gather that the more iron in the brain, the more black areas show up on an MRI... but they still cannot tell you an exact weight of the iron, i.e. how many grams there is in the brain... I find this very exciting, that people are doing all of this iron testing, and coming out with some rather startling numbers! As a note of interest, there are about three people in the adult chelation form with MS, and they are relating low iron... which Andrew Cutler says he finds most often, that there is low ferritin with mercury poisoning. This is what my environmental illness doctor, Dr. Lyn Hanshew, (askDrLyn.com) had noted in her clinic... that ferritin was generally low with mercury poisoning and she remarked on my level of 88 as being surprising, particularly since I was super hypothyroid... once again, commenting on reference ranges etc... my TSH was always normal, but when somebody finally tested for free T3, I had virtually none in my system... T3 is the active form of the thyroid hormone, and as a matter of interest, metals can interfere with the conversion of T4 thyroid hormone to T3, I did not know how iron might affect the conversion of thyroid hormones in the liver, but I assume that it would have negative impact. What I am trying to say is we are limited by current knowledge of metal metabolism in MS, and we don't know how many of us have accumulated other toxic metals that might also be affecting iron metabolism... aargh matey, there is a long road ahead, but if phlebotomy can be utilized in those with enough iron, perhaps we can get rid of all the other toxic metals at the same time with phlebotomy, increasing chances of healing no matter what our environmental exposure has been. I have a lot of mercury exposure, tested incredibly high in mercury, so perhaps my iron accumulation was slower, but I am accumulating all the same and trying to deal with too much mercury in combination with accumulating iron. Or maybe the iron started the accumulation of mercury by shutting down liver detox pathways... Dr. Lyn Hanshew ran something on me called a liver detoxification profile, which I flunked... that was back in the year 2003 of four pathways were virtually nonfunctioning. I remember thinking at the time that I must've had one heck of a lot of mercury to shut down the liver that badly. Now I suspect it was an accumulation of iron that precipitated the accumulation of mercury... who knows? I know I have been studying heavy metals for 12 years, so I think I have a good understanding of the damage that they do, and how they screw up the immune system... they affect the T cells! They affect inflammatory pathways... there is a ton of information on heavy metal poisoning out there, and I have always wondered why they were not studying heavy metal poisoning in relationship to MS... but then I've always concluded there is not a drug treatment that would supply ongoing income for the pharmaceutical industry if they simply get rid of the root cause, the heavy metals. Cadmium can cause iron should accumulate also... heavy metals are like nutrients, one overload can cause another overload... for example, because copper and zinc balance each other, an overload of copper will cause a deficiency of zinc, which then causes all kinds of physiological impairment... copper overload causes intense fatigue, too much calcium in relationship to magnesium deficiencies can cause plaque buildup, calcium deposits into soft tissue etc... it will be interesting to see iron panels from people with Primary Progressive in relationship to Relapsing Remitting... perhaps secondary progressive is just a state of more steady iron accumulation... it is great that we are finally finally seeing what might be the root cause of MS, an overload with the heavy metal iron!
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Postby ForeverSpring » Wed Feb 03, 2010 1:05 pm

jimmylegs wrote:great news, FS. check this out:
Chromogenic bacteria cause stains, typically at the gingival margin of the tooth. The most common is a black stain caused by Actinomyces species. The stain is composed of ferric sulfide and is formed by the reaction between hydrogen sulfide produced by bacterial action and iron in the saliva and gingival exudates.

Thanks for that tidbit of information! What interesting things we learn on this forum! :) So that old dentist knew what he was talking about.

I did not like the scraping and really brushed my teeth hard! All to no avail! My teeth had those black stains on them for several years, and then somewhere along the line, the black stains were succeeded by brown stains. Now the hygienst asks me, "Do you drink a lot of coffee or tea?" No, never! Apparently, a different strain of bacteria has moved in.

It is intriguing that high iron was noted way back then. It does make me wonder if a genetic factor was involved.

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Postby Merlyn » Wed Feb 03, 2010 1:06 pm

Even beyond the fact that Zamboni has said that liberation treatment does not seem to be suitable for people with primary progressive MS, I have one other question about it. I have three kidneys, a duplex system on my right side. There are two ureters descending from this duplex system into the bladder. On ultrasound, they determined that the one ureter was not working at all... they can actually see on the ultrasound the opening and closing of the "mouth" of the ureter, it is sort of like the mouth of a fish, open and close, open and close. The one ureter was working fine, the other was not.

So back in 1989 I agreed to do something called a cystoscopy, which turned out to be one of the most painful experiences I've ever had. Without anesthetic, they threaded a wire up the urethra into the kidneys! This was in order to open up the one ureter that was not functioning... in other words, it was very much like an angioplasty procedure for the ureter. The ureter stayed open for about two days, then collapsed into its former state. I just about passed out on the operating table, my blood pressure went down to 50/40 and they had to pump me full of Demerol via injection to stop the meltdown. Then the idiots wanted me to do it again! Right! I am relating this because I don't see what is going to prevent the veins from collapsing again, especially if there is some sort of thick blood happening due to iron accumulation... in my case, there were no lasting results from opening up the ureter, the walls came tumbling down again. Just wondering what is going to keep the veins clear in CCSVI, not that I am not wishing for the best results for whoever does it... it's just my individual experience.
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Postby Merlyn » Wed Feb 03, 2010 1:28 pm

I was not able to tolerate LDN at all, it increased my spasticity to an amazing degree, to the point where I was absolutely thrashing around in bed and could not sleep at all. I tried LDN first in 2002, and did not tolerate it even then, although my reason the first time was more along the lines of ongoing nightmares. I couldn't sleep on it, nor could I sleep on it this last time... it also sent my T cells in the wrong direction.

http://tinyurl.com/ygckdyz

but again, I am glad for the people that have found it to be helpful. Perhaps it stops the damage from the T cells, and perhaps it can even stop iron from accumulating who knows? It would be interesting to see if people that have been on LDN for many years have the same blocked veins/stenosis. There is one man on the histamine forum who has had amazing responses to LDN... he'd recently had one of the Doppler ultrasound and his veins were clear as a whistle... but there seems to be a relationship between iron and T cells... with the caveat that there is a relationship between T cells and any accumulation of heavy metals.
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Postby jimmylegs » Wed Feb 03, 2010 1:37 pm

FS, i had as a child, and still have, little black lines on the chewing surfaces of my molars.. last time i was at the dentist they said it was a bacteria seen in 'clean mouths' - probably the following, and possibly similar to yours (although i have never heard any comments about iron in my case)
"Chromogenic bacteria have been cited in children. Particular colours of staining are said to be associated with certain mouths, for instance, green and orange in children with poor oral hygiene and black/brown stains in children with good oral hygiene and low caries experience. Conclusive evidence for the chromogenic bacterial mechanism has not been forthcoming."
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Postby Merlyn » Wed Feb 03, 2010 1:51 pm

I gather most doctors do not understand or look for the underlying cause of anemia i.e. whether it is actually iron loading anemia:

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

6. What about anemia? Anemias are iron-loading, except for anemias resulting from chronic
blood loss or tumor. When iron accumulates in storage instead being used by hemoglobin,
the patient's hemoglobin will test low. Iron should not be administered. Instead the patient
needs a complex of B vitamins, including B6, folate or folic acid and B12. The excess iron
must be removed despite the anemia.


when they are doing phlebotomies, they go by these numbers instead when dealing with iron loading anemia if you have a Dr. to recognize that

5. With a hemoglobin of 10 or higher and a hematocrit of 33% or higher, a full unit of blood
should be drawn off once or twice a week. The blood is usable as donor blood when it meets
all safety criteria.


I used to be amazed at the number of people on the MS newsgroup of altsupport.multiple sclerosis that had pernicious anemia...
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Postby jimmylegs » Wed Feb 03, 2010 2:18 pm

in MS patients, according to klenner, "16) Make certain that the hemoglobin is at least 13 grams." he does not advise taking supplemental iron (mind you, he does not advise supplemental d3 either - old regimen) and his regimen is heavy on b vitamins. (and vit e too. i have klenner to thank for being able to type and write and play guitar again - it took 3 days..)
Last edited by jimmylegs on Thu Feb 04, 2010 6:15 am, edited 1 time in total.
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