Excellent result Merlyn. I'm really happy for you.
I'm having one of those excellent days, I think the heart is calming down now. I've read of a few people with HH who get the heart arythmia thingy when they take too much blood, so they cut it down a bit. I don't think I'll have that luxury.
Phlebotomy anyone?
hey everyone, i'm trying to read all the pages in this thread but there's an awful lot to go through. forgive me if the information i'm about to ask for is on a previous page...
is there a 'best' way to ask for the particular iron tests so the GP is receptive in ordering them? we're in vancouver, so if there are any canadians out there who have had luck with this, i would appreciate any advice you may have.
i'd like for my whole family to be tested, my sister has MS, my dad developed type 2 diabetes (his mother had type 1), my grandmother developed cancer/arthritis/anemia, i've gone back and forth from anemic to 'great' iron levels (add the surprised tone in the voice of the blood bank volunteer)/IBS/depression/knuckle pain.... (what if some MS sufferers have the ccsvi/hemochromatosis combo?)
is there a 'best' way to ask for the particular iron tests so the GP is receptive in ordering them? we're in vancouver, so if there are any canadians out there who have had luck with this, i would appreciate any advice you may have.
i'd like for my whole family to be tested, my sister has MS, my dad developed type 2 diabetes (his mother had type 1), my grandmother developed cancer/arthritis/anemia, i've gone back and forth from anemic to 'great' iron levels (add the surprised tone in the voice of the blood bank volunteer)/IBS/depression/knuckle pain.... (what if some MS sufferers have the ccsvi/hemochromatosis combo?)
Wow, my Dr. is not even going to wait for blood test results. I have a second phlebotomy scheduled for March 2! This is so cool, I did not think it would be so easy, and I know that most people will not have that outcome. I feel like one phlebotomy knocked off about eight months of progression, so I am really curious what will happen the next one. Also, I feel like every two months will be the right schedule, I have learned from past experience to not try to detox anything too fast. I assume that detoxing iron will be the same, too fast and you'll perhaps experience bad reactions. I am usually incredibly healthy, never catch colds, never catch flus, energy is fine with the thyroid. I am absolutely positive that this will halt progression for me. And hopefully partially or fully reverse some of the most intractable symptoms like unbearable spasticity. I am so so grateful.
I hope it does the job for you Merlyn!!! Fingers crossed.
Last edited by LR1234 on Wed Feb 24, 2010 1:51 pm, edited 1 time in total.
lilsis-I would not ask for everything all at once. I would point out that you have had some rather strange vacillations in your iron, and you would like the full iron panel. You said your sister has MS, do you also? Believe it or not, it Ontario they are refusing to test for iron for people with MS, saying the tests are unnecessary! It constantly amazes me how much money they can spend on unnecessary crap. I don't want to start a political discussion, but our government has spent $55 million on signs at construction sites announcing the conservative economic action plan! What a waste when they could be spending the money on healthcare.
Has anybody contacted their MS society with news of our method?
My sister has written to both the NZ Blood Donor Service and also the NZ MS Society about her not being able to give blood even though her ferritin is over normal ranges. We have to get this practice accepted and available to all. Even if they do have to put the blood down the drain (a pity).
How can we get some support here, and get the news out.
My results are too amazing to describe. If this can help someone else who is in the early stages like me to go completely back to normal (touch wood!).
If it can help more progressive MS'ers it just can't be overlooked.
Merlyn, I agree about keeping it slow. I had some pretty weird symptoms after the blood test + donation = around 570mls in one week!
Too much for my system. I seem to be coming back to normal, it's taken six weeks. The heart flutters now are painless, just a bit annoying.
It will be interesting to see what happens at the next blood draw.
I'd really like to have less blood taken in one go. I know the 100ml blood test didn't give me any bad side effects at all. But when it wore off after 4 days, I seriously crashed out. No pain, no gain maybe?
My sister has written to both the NZ Blood Donor Service and also the NZ MS Society about her not being able to give blood even though her ferritin is over normal ranges. We have to get this practice accepted and available to all. Even if they do have to put the blood down the drain (a pity).
How can we get some support here, and get the news out.
My results are too amazing to describe. If this can help someone else who is in the early stages like me to go completely back to normal (touch wood!).
If it can help more progressive MS'ers it just can't be overlooked.
Merlyn, I agree about keeping it slow. I had some pretty weird symptoms after the blood test + donation = around 570mls in one week!
Too much for my system. I seem to be coming back to normal, it's taken six weeks. The heart flutters now are painless, just a bit annoying.
It will be interesting to see what happens at the next blood draw.
I'd really like to have less blood taken in one go. I know the 100ml blood test didn't give me any bad side effects at all. But when it wore off after 4 days, I seriously crashed out. No pain, no gain maybe?
Bethr-I totally agree with the need to make people aware that this method of iron reduction has to be investigated and implemented wherever it might help. There is nothing for Primary Progressive MS, and quite frankly I'm thankful for that! When I first went to my present Dr., he had lamented the fact there was a treatment, and I replied by saying "Thank God"! You see, I had reached the point where it wanted nothing to do with any of their invasive "fixes". 27 years after I had a myleogram, their caustic oil still appears on x-rays! The spinal system is a closed system, and the oil that they injected it into my spine had no way of exiting. There are numerous class-action lawsuits going on over this Myodil because it is the main cause of back failure! They no longer use it. I am thrilled to death with my results, and I am positive that I can halt the progression and hopefully regain some function. Iron is a poison in excess, who knows what getting rid of this poison will do for me? We are in uncharted waters.
I have finished my article, and trying to get a hold of Scott. I left a message and I will call him again. I will try to get it published, because I believe thoroughly believe we can prevent MS from happening, and yes, Alzheimer's and Parkinson's... PP stands for Preventative Phlebotomy!http://iospress.metapress.com/content/rf356qbgqmpff784
The iron overload disorder, Hemochromatosis, is the most common genetic disorder (1:200) so a significant percentage of AD patients can be expected to carry this mutation. Heterozygotes for this mutation also have an increased, but sub-clinical iron burden. Given the high percentage of the population who are at significant risk for iron overload, we propose that the hemochromatosis mutation be considered as a confounding factor when evaluating the contribution of genetic associations with AD and treatment strategies and efficacy. Two recent papers and new evidence presented here that the protein associated with hemochromatosis
Bethr-I ended up on a DMPS backfire website from trying to detox mercury. Back in 1998. Had many worsenings from trying to chelate, and I am actually pleased that will only be every two months for the phlebotomy. I think I am okay to do another one March 2, but then I do want to give it a two month break. Where do most doctors go to school?
What about phlebotomy? What about not letting the iron get into the brain in the first place?http://www.webmd.com/news/20000228/high ... s-patients
In "It's well known that there is no mechanism of getting rid of iron from the body. Our findings suggest that, unless medically indicated, people should not take extra iron because it may have deleterious effects," he says.