Phlebotomy anyone?

[Merlyn]

Erika-unfortunately, ferritin and thyroid does not seem to always have a linear relationship... for me, when I was severely severely hypothyroid (had a free T3 of 2.3 reference range 2.8-5.0) I had a ferritin of 88. I remember my Dr. commenting on it, that she was surprised my ferritin was that good when I was hypothyroid. Thyroid problems are incredibly common with hemochromatosis has I am finding out... frankly, this hemochromatosis crap explains so many things. I have five brothers and sisters, none are showing any signs of MS, and none of them show any thyroid problems either. I hemochromatosis, iron gets deposited in organs like the thyroid, and also poisons the pituitary in many cases... I really wish you could get the test for hemochromatosis because it may all go back to that, including the thyroid. Seeing as how you are already on thyroid medication, do you suspect you are undertreated?

[Merlyn]

I continue to have some amazing relief from spasticity, and my hand function is remaining good! Pain is also reduced, but that may also be related to the reduction in spasticity. If I had to put a number on things, I would estimate that this one phlebotomy made about eight months of the progression disappear. Remember, I have been freaking out about the acceleration of progression since menopause. Not getting rid of the iron through menustration has been a major problem! I just keep thinking what 10 more could do... remember, about 25% of heterozygotes have abnormal iron studies! 11% of the population are carriers... this represents a very large group of us iron overloading heterozygote hemochromatosis types. We can be fixed! This is what is blowing me away... we can be reversing this! I knew there had to be a reason that I have been obsessed with chelation therapy/metal metabolism. If I had not been studying mercury/heavy metals, I would not understand the whole concept of iron as a heavy metal. It is not a good thing to have in your body in excess. In a way it is a very good thing that I am Primary Progressive, because I do not have back-and-forth functioning... when I go down I go down...

Phlebotomy Is the First Thing That Has Ever Made a Difference in Reversing Neurological Functioning!!! Thyroid got me back energy wise, but it has never really reversed anything like hand function, my hands continued to lose flexibility.

[ErikaSlovakia]

Seeing as how you are already on thyroid medication, do you suspect you are undertreated?

It is possible.
I will try to ask her for the hemochromatosis test again tomorrow.
Erika

[Merlyn]

As another note, I have never had any success reversing neurological symptoms doing chelation therapy. And I have done DMPS IVs, DMSA, DMSA/ALA (although I do not tolerate this), ALA by itself which gave me such anxiety I could not continue, NDF, NDF plus, glutathione IVs, nebulizing glutathione, Metals Factors, Porprazyne (http://www.funimky.com/downloads/ALL%20 ... RAZYME.pdf)
oral EDTA, 53 bottles of NCD!, four bottles of ACZ zeolite, tons of chlorella, chitosan, PCA-RX, TD-DMPS, Metal Free, 18 g bottle of OSR which gave me explosive Candida, plus all kinds of other mineral loading therapies based on the Klinghardt philosophy that mineral replacement is one of the keys recovery. So I have nebulized magnesium, taken umpteen mineral replacement products... all to no avail. Constantly taking antifungal therapies, which don't seem to do much of anything... sat in an infrared sauna for a year... plastered on a jug of Ancient Minerals... this is a partial list!

And yet a single phlebotomy has done more than any of the above.

[shye]

HI Merlyn,
Just curious-why, with all of the chelation you did, did you not use EDTA drip? I am curious I guess because that is the form I have chosen (disodium EDTA), and am currently undergoing.

Again, really impressed with your results-and your persistence.

[Merlyn]

Shye-I never did the whole EDTA injection or IV because I had always understood that EDTA does not bind mercury strongly, and I tested incredibly high in mercury. Some people said that EDTA could actually redistribute mercury into the brain, and people like Hal Huggins said people with MS should not use it because of this risk factor and increasing neurological/inflammation problems he saw with it. And I have done other IVs like DMPS and came to the conclusion that it is a very scary thing to put something directly into your body and if you have an adverse reaction to it, you have put quite a bit in your body. When I did glutathione IV I did a 10th of the normal dose, and I still had a bad reaction... they know now that when they do IVs of glutathione, you should take things that soak up released toxins in the gut. I lived in the Seattle area from 1995 to 2004, and went to Klinghardt's clinic in Bellevue... my N.D., who specialized in heavy metal detoxification said she did not see good results with EDTA and MS, so at the time Klinghardt was recommending these DMPS IV so I went with them.

This is the reason I was so quick to accept Marie Warder's vicarious statement that chelation does not work with hemochromatosis... been there done that, broke from doing that! In fact, after the OSR I was feeling very very down about the whole chelation thing, because I saw it is my best chance considering I am PP. And I just kept thinking that the only thing that could explain my thyroid problems, my very low adrenal hormones, my hair analysis, my heavy metals challenge tests, neurological deficits was heavy metals, it was the only thing that I could make "fit"...

I grew up with Popeye cartoons, and got brainwashed I guess. I did not realize that iron is considered a heavy metal in excess.

[shye]

Thanks for the reply Merlyn-
-I'll go back and check what I have bookmarked on chelation and EDTA, and check what is said re: mercury.

IP6 chelates mercury, as well as cadmium, and of course iron.
For anyone interested in a non-invasive form of iron chelation, that is with the supplement IP6, the following article is a good explanation:
http://www.lewrockwell.com/orig/sardi10.html

[jimmylegs]

interesting links between heme synthesis, porphyria, and zinc:

http://en.wikipedia.org/wiki/Porphyria
Porphyrias are a group of inherited or acquired disorders of certain enzymes in the heme biosynthetic pathway (also called porphyrin pathway).

http://en.wikipedia.org/wiki/ALA_dehydratase_deficiency
ALA dehydratase deficiency (also called ALAD porphyria) is a rare cause of hepatic porphyria. It is an autosomal recessive disorder that results from inappropriately low levels of the enzyme ALA dehydratase (ALAD, also called porphobilinogen synthase), which is required for normal heme synthesis

http://www.ncbi.nlm.nih.gov/pmc/article ... =pmcentrez
ALAD porphyria is a rare porphyric disorder, with five documented compound heterozygous patients, and it is caused by a profound lack of porphobilinogen synthase (PBGS) activity. PBGS, also called “δ-aminolevulinate dehydratase,” is encoded by the ALAD gene and catalyzes the second step in the biosynthesis of heme. ALAD porphyria is a recessive disorder...

http://en.wikipedia.org/wiki/Porphobilinogen_synthase
Porphobilinogen synthase (or ALA dehydratase, or Aminolevulinate dehydratase) synthesizes porphobilinogen through the asymmetric condensation of two molecules of aminolevulinic acid. All natural tetrapyrroles, including hemes, chlorophylls and vitamin B12, share porphobilinogen as a common precursor.

http://www.springerlink.com/content/k0p71653q736506u/
In two young patients with acute hepatic porphyria syndrome and persisting paralyses, which increased in intensity during intermittent occurring crisis, the activity of erythrocyte porphobilinogen synthase (-aminolevulinic acid dehydratase) was found to be considerably diminished, below 1% of the value of normal control persons. In contrast, the activity of uroporphyrinogen synthase was normal. Both patients have been excreting high quantities of -aminolevulinic acid and porphyrins in urine for years. Lead intoxication has definitively been excluded. Since the relatives also show lower activities in porphobilinogen synthase, the disease of these two patients is probably a new enzymatic type of inherited acute hepatic porphyria, the excretion profile of which is qualitatively completely different from those of the known acute porphyrias. The discovery of this porphyria confirms the theory of overlapping transition in the biochemical and clinical symptoms and analogies among acute hepatic porphyrias.

Scandinavian Journal of Clinical & Laboratory Investigation
1979, Vol. 39, No. 1, Pages 31-36
Effect of oral zinc intake on δ-aminolaevulinic acid dehydratase in red blood cells
Earlier results regarding the in vitro and in vivo effects of zinc on δ-aminolaevulinic acid dehydratase (ALAD) activity in red blood cells were confirmed in healthy human subjects after oral intake of zinc for 12 weeks. In one group of seven healthy adults, oral intake of zinc, as the sulphate salt (2.07 mmol zinc/day) for 6 weeks, resulted in a 44% increase in the activity of ALAD in erythrocytes. Plasma zinc levels also increased during the experimental period and reached a maximum of 29 μmol after 6 weeks and remained constant thereafter. In another group, the intake of zinc in a lower dose, (0.69 mmol zinc/day) for 12 weeks, showed a similar tendency, although the increase in the enzyme activity, as well as the plasma zinc levels, was relatively much less. The plasma copper levels decreased significantly in the second group after the zinc intake and reached a low value of 11 μmol at the end of the experimental period. The Cu:Zn ratio also decreased considerably towards the end of the experiment. The Cu:Zn ratio in the plasma seems to be a more valuable indicator of zinc status than plasma zinc levels alone.

[shye]

Jimmylegs-
you can take that research even further re: zinc
There is a similar to porphyria dysregulation in heme synthesis called pyroluria (porphobilinogen is a pyrrole, and prophyrins are tetrapyrroles)--for which the "cure" is large doses of Vitamin B6 and of Zinc

http://www.nutritional-healing.com.au/c ... =Pyroluria

the symptoms are extremely similar in both diseases, yet for porphyria the "cure" is mainly avoidance of many precipitators--
with pyroluria (and I'm sure would work if have porphyria) the "cure" is to take large doses of Vit B6 and Zinc

[jimmylegs]

hi shye yes i have read about that too, alleged schizophrenic porphyria aka pyroluria. what does this have to do with MS? i think the claimed comorbities like celiac, epilepsy, autism, alcoholism etc are interesting, at least... what are the common denominator(s)?

anyway last year i helped someone work on a presentation about schizophrenia and it seemed to me these patients had their copper zinc balance out of whack. also the older and discredited claims about using niacin for supposedly niacin-deficient schizophrenics turned out to be a PUFA deficiency causing their lack of response to niacin, not niacin deficiency as originally believed. very interesting.

that whole body of work by hoffer, pfeiffer, pauling, etc is when i realized my own personal approach already had a reviled-by-mainstream name tag: orthomolecular. that is when i originally changed the name of my regimen thread from "mega D .." to "orthomolecular.." too bad it seems to have gotten off to a bad start.

i did not spend long on the pyroluria topic because there was adequate material in the time i had to make good points without doing a lot of work to investigate more hypothetical ideas.

at any rate there certainly seems to be a zinc AND heme synthesis connection, (although i tend to doubt the notion of pyroluria CAUSING zinc deficiency and that being the reason why large doses cure this proposed condition).
TTFN!

[shye]

Hi Jimmylegs-
Don't have the time right now to give this due attention--I connected the dots because of the ongoing discussion re: Porphyria (in this thread and a few others) as being connected to MS--if so, then pyroluria would be also--will connect those dots when I have time (if there are dots, and pretty sure there are).
A quick thought is that zinc and vitamin B6 (deficiencies) are the connectors--zinc deficiency is also a problem in celiacs, and most probably in autism(where B6 and Mg are of great help).
And why off the top of your head would you " tend to doubt the notion of pyroluria CAUSING zinc deficiency and that being the reason why large doses cure this proposed condition)." ??--it is not a "notion"--it has been tested and proven--it causes B6, then zinc to be drawn out of the body. (will locate this info and post later).

and when I say zinc deficiency, I also mean a mess-up in the zinc/copper ratio---a def of zinc would usually mean too much copper. Their ratio is super imp in quite a number of mechanisms.

And Jimmy, you say

also the older and discredited claims about using niacin for supposedly niacin-deficient schizophrenics turned out to be a PUFA deficiency causing their lack of response to niacin, not niacin deficiency as originally believed. very interesting.

This is wrong!
the niacin theory has not been disproved (and it is not a niacin deficiency, it is a niacin dependency, ie, you need more than the usual)--what has been shown since that theory is that there are various ways a mechanism can get disordered to get to the same spot of disorder. Some persons need to correct a PUFA deficiency and or/dependency, some need to do same with niacin, some with Vit B1, some with Vit B6, some with protein, etc etc.etc. The body is a complicated organism.

[jimmylegs]

shye, i try to be cautious when i have not read about something (ie pyroluria) in detail. hence terms like notion.
also, from what i have seen most of the literature on niacin flush, schizophrenia and deficiency speaks to PUFAs.

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anyway my original point was on the zinc connection to porphyria and heme issues. ran across it by accident while looking up something unrelated.

[Merlyn]

I got hung up on me zinc connection for years, but correcting my deficiency never did anything for me healthwise. For years I experimented with different types of zinc, and I would periodically taste test with zinc sulfate and I would do blood tests. I finally found a form of zinc by Radiant Health called Krebs zinc and it seemed to bring up the serum levels where nothing else did, but I saw absolutely no improvement in MS symptoms... I experimented with P5P in addition to the zinc etc., I am an old dawg that has been doing the lab rat routine for 20 years.. My one phlebotomy has done more than anything else ever did. I am finding that this thread is getting very murky/muddied and I am going to start another thread it still focuses on phlebotomy of that is okay...

[jimmylegs]

sry m, i searched the forums for heme stuff and porphyria, found mention under phlebotomy, so there it went.
glad you have seen relief with phlebotomy.
what were you able to get your zinc levels up to, merlyn?

[Cece]

I am trying to recall if someone said that in order for iron to get into the brain, the blood brain barrier must be damaged... but that is not true! They've known now for years that iron can get into the brain.

I was the one wondering about this, thanks!