chelation therapy

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

Postby Bethr » Sat Jan 09, 2010 3:09 am

shye wrote:Bethr,
Is it important to get a fasting iron test? Mine were okay, but were not done fasting.

I was told to fast for 12 hours before and get the tests done in the morning.
I have just got my hemochromatosis results and I am Heterozygous for C282Y, so just one gene. It mentions on the results that you can apparently still overload to some degree, which I am. My saturation is down from 62% to 51% (20-40% recommended), and my ferritin is down from 175 (150 recommended) to 121. My iron is down from 28 to 26.

Merlyn, nice to hear someone else felt better after having blood tests taken. LOL. I'm 47 so coming up to the time of menopause I'll have to watch the iron levels closely. I haven't slept once during the daytime since Tuesday morning when I had the blood tests done, first time since Xmas day, and I have quite a lot of energy, it's really refreshing! Now I've just started menstruating so will be fine for the next 7 days or so, until the fatigue builds up again.

Must also mention that I have no spleen (lost it in a car accident at 13yrs of age). I don't know if that has any effect on iron levels as it is a storage area, but it certainly gives me strange white blood counts and always has. Other than that never had a problem without it. Some other stuff has shown up on the blood tests. High ANA Titre - Speckled, so off to the Doc again to see what that's about.

I had to ring my Dad and tell him, and went to visit my sister too as they need to be tested for Hemochromatosis now. As I said my sister has MS, my brother has serious liver disease, so he'll need to get the HH tested for sure.

I'll keep you informed on the progress in the iron saga. No doubt I'll end up being sent to a Hemotologist or similar.

Cheers :)
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Postby Merlyn » Sat Jan 09, 2010 1:17 pm

So you are a heterozygote! The lab GeneTrack has received my sample, so I should get the results in about seven business days hopefully. I am beginning to think that The Bronze Killer by Marie Warder should be required reading in medical school. Marie Warder had a strong dislike for many doctors and their arrogance. Obviously, we don't know how iron overload can affect various people. Iron can cause epithelial cell proliferation, perhaps this is why the veins narrow and twist... so little we don't know. If you have not read The Bronze Killer, I would highly recommend it. It is a real eye-opener. I think this Marie Warder should be given the Nobel Peace Prize for medicine.

I come from a large family, Irish Catholic. I have 56 cousins and if I do show up with a genetic mutation, I will be urging everyone in the family be tested. Hemochromatosis could explain a number of conditions that have affected the family longevity... it is hard to wait for the test results. I want to know now, and start treatment. At least there would be a chance of recovery, or at least recovering somewhat.
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Postby shye » Sat Jan 09, 2010 3:33 pm

thanks Beth,'

and good luck to you, and to you also Merlyn.

Keep us posted.
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Postby shye » Sat Jan 09, 2010 4:03 pm

When I hd such severe liver problems, the doctors ran me thru a million tests, since they were not sure what initial problem was. After 2 years, and many invasions, I said "that's it", and left my liver doctor, who constantly fought with me over using nutritional supplements. I then went fully onto super nutient supplementation, and found an osteopathic dr, (after trying a number of other doctors) who tests my liver periodically, and is aware of what I am doing. My optic neutitis preceded my liver problems, but after the almost complete liver failure, no doctor would listen to me re possibly having MS. They attributed the severe tiredness, muscle probs, etc all to liver. So my MS was picked up super late, again at my instigation--I believe if gotten earlier, would be easier now, because I would have pursued all the alternative options earlier. But luckily I did go on a lot of supplements, incl NAC, Flax etc, so took a number of supplements helpful with MS also, so who knows. But I did not take EPO and mega dose B1, which take now, and which I think are super imp. with MS and with severe fatigue.
I also wonder how much of my liver problem might have originated with the MS, and then been exacerbated by the meds I was given for the "chronic Fatigue" they diagnosed--on several threads have seen reference to jaundice and high enzymes (which I had) with beginning of MS.
I guess what I am trying to get at is even if your docs can't figure out your exact liver prob, you yourself know there is a problem-- Definitely use high doses of silymarin, NAC, ALA--when really bad, I also used dandelion. Used more stuff, would have to sit and mull it over to recall full protocol.
Also tried to watch my diet re: food allergies. Did cheat too much, since allergic to so much.
But , ended up with liver the right size, ascites not usually present any longer on scans, the huge nodule that was so hard it bent the needle during the biopsy! has dissolved (no longer shows on ultrasound), and liver enzymes usually quite okay.
Still have, and will always have, perfuse liver damage, but clearly I am handling it very well for the most part.
So, for you it might be much easier, if you are just getting high enzymes, with no damage showing yet. If you take the liver specific nutrients should be able to strenthen it enough to handle some types of drugs. And I know I can handle zithro, even with the damged liver. There are lots of drugs I can't (and wouldn't anyway) touch.
I guess what I'm saying is is that is relatively easy to strengthen your liver, even if you are not sure of the exact problem, and is well worth doing. AND I am doing well enough for my Dr to say at this point i can handle chelation.
Wishing you well with it all.
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Postby DanTheMan » Mon Jan 11, 2010 9:11 pm

I keep coming back to aluminum.
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