Phlebotomy anyone?
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dlb
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- Location: Didsbury, Alberta Canada
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Does anyone know the reason why blood is not accepted from pwMS in some areas but it is in other places? Seems odd that if there was a real concern, that this blood product would be denied everywhere in the world, doesn't it?? Is it possible it is the drugs that are generally associated with the MS dx? Just curious if anyone knows the actual thoughts/reasoning behind the denial...
dlb-I was told in Canada that even though they know that MS is not transmittable through the blood, they are worried about the health of the donor. Some people with MS are very debilitated, so they don't want to endanger their health further. They are trying to get the rules changed through Health Canada, but they expect the petition to not be approved for years if at all.
Shye-I used to take evening Primrose oil, I always did well on it, so maybe I should start taking it again. I am really tired of the supplement routine, all of the different capsules I am already ingesting. I might ask my Dr. if he would authorize smaller bloodletting, I did not find the 60 mL to be helpful. My last proper phlebotomy was done in March, so it has been a fair while, but my ferritin was only 24, so not enough to do a major blood dump. I am going to wait till July 7 when I see the hematologist to ask whether she sees any alarming problems, and if not I'm going to ask my GP to do monthly 100 mL. He might go for it, he has been pretty cool on a couple of levels. I used to use evening Primrose oil for PMS and found that it worked for that.
Shye-my environmental illness Dr. was one of the first to be a convert to the toxicity implications of MS. Andrew Cutler PhD was in the Seattle area when I lived there, and my Dr. Dr. Lyn Hanshew, remarkably well educated woman had a degree in biochemistry and understood his self published book. So following it, she ran all of the recommended tests on me and a bunch of patients with various illnesses. Dr. Lyn had a special interest in MS because her sister has it, and Dr. Lyn detoxed her and she is now in her 50s, symptom-free. I tried to do that ALA/DMSA protocol and ended up very sick. Andrew Cutler now says that DMSA seems to trigger some sort of immune reaction with MS and he recommends ALA only. I have no tolerance for it whatsoever, and I wish they would come out with a truly time released ALA because Cutler says the so called time released is not really time released at all, and he says to stay away from it.
I did show all of the symptoms of mercury poisoning, all of the results of my tests were totally in line with what Cutler predicted would be showing. And of course this is why I have been trying to detox mercury for years without much success. OSR (Boyd Haley invented this Oxidative Stress Relief and it was supposed to be a miracle!) Did not do anything for me except cause an explosion of Candida. It was hoping it would work like ALA without the side effects. But I don't really see a lot of testimonials anymore about the OSR. Zeolite did nothing for me other than reduce my wallet.
I am tolerating EDTA without a problem, but I understand it doesn't do much for mercury, the binding is not strong enough to pull it out.
I am trying to figure out whether phlebotomy actually halts progression. I felt much better when the ferritin was 15, I am back up to 24, and want to go back down to near anemia levels. Kind of hard to keep monitoring it without the lab tests, so I will have to go back to my GP and get him to agree to smaller blood withdrawals. Maybe the hematologist might get on board for it.
I did show all of the symptoms of mercury poisoning, all of the results of my tests were totally in line with what Cutler predicted would be showing. And of course this is why I have been trying to detox mercury for years without much success. OSR (Boyd Haley invented this Oxidative Stress Relief and it was supposed to be a miracle!) Did not do anything for me except cause an explosion of Candida. It was hoping it would work like ALA without the side effects. But I don't really see a lot of testimonials anymore about the OSR. Zeolite did nothing for me other than reduce my wallet.
I am tolerating EDTA without a problem, but I understand it doesn't do much for mercury, the binding is not strong enough to pull it out.
I am trying to figure out whether phlebotomy actually halts progression. I felt much better when the ferritin was 15, I am back up to 24, and want to go back down to near anemia levels. Kind of hard to keep monitoring it without the lab tests, so I will have to go back to my GP and get him to agree to smaller blood withdrawals. Maybe the hematologist might get on board for it.
Merlyn-
ALA is so good for so many things--I started taking it for my damaged liver years ago, and still take it.
Have you tried different brands? I started with the Jarrow when I was severely sick and could not tolerate many of the supplements,but was okay with this; took that for years, and am now using the Drs Best (good brand, was on sale
). I am okay with both these brands.
I get bloods (ferritin and CBC) taken next week, so will post results--hope the ferritin comes down, then will know this is all worth it.
(am stringing out getting my different bloods drawn--ie, go different days, so get more blood drawn that way--comes to at least 3 vials, 25 ml per week--sometimes even more
).
ALA is so good for so many things--I started taking it for my damaged liver years ago, and still take it.
Have you tried different brands? I started with the Jarrow when I was severely sick and could not tolerate many of the supplements,but was okay with this; took that for years, and am now using the Drs Best (good brand, was on sale
). I am okay with both these brands.I get bloods (ferritin and CBC) taken next week, so will post results--hope the ferritin comes down, then will know this is all worth it.
(am stringing out getting my different bloods drawn--ie, go different days, so get more blood drawn that way--comes to at least 3 vials, 25 ml per week--sometimes even more
).
Last edited by shye on Wed Jul 07, 2010 7:09 am, edited 1 time in total.
Shye-I have an appointment on Monday with the naturopathic Dr. to take out more blood if she will do it. I have a feeling that I absolutely must keep the iron down to 15 ferritin. My spasticity is slowly creeping back, it is still not as bad as it was in January, but my ferritin is 24 and I think that the higher it goes, the worse my spasticity. I will also report my results. Part of me gets paranoid that it will no longer work, but I must calm down as I am pretty sure that it will fix me up.
Merlyn, this is Daisyduck. We just returned from Stanford after the checkup (MRS only) and speaking to Dr. Dake. He thinks that "the plumbing looks good," meaning the four stents are all in their proper place in full working order with no clotting, and we talked about my having reverted some to conditions before surgery last year, especially as it regards heat resistance and balance, and he has no idea at this time why, especially heat resistance is no longer present. He feels this is a key point to keep in mind, especially after I told him that I did not think I am the only one this happened to. The news for mewas that therte were no new leasions in the brain, and the old ones he said looked like they had been there awhile. That was good news. While we were shown the three stents in the interior left jug and both subclavians, the vein/stent in the azygous was almost impossible to see on the MRI pictures. I feel there was a change in protocol of how that test was conducted in that the breathing on 30-second holding of one's breath was no longer done and instead, the tech wound a monitoring device around your waist that measured your breathing, and that was it and who knows, may have had an effect on the quality of some of the pictures.
Stanford received a five million dollar grant for their double blind (nothing from the MS Society) from a company in Ohio. I did not remember to ask about the phlebotomy but am still interested in hearing about a doctor who will do it as a medical procedure rather than a blood donation, and I wish you good luck and hope this will work out for you and that you will tell us about it. I did give Dr. Dake an article from the internet about two Spanish docs in Madrid who perform minor surgery around the brachial plexus not on veins but arteries in cases of Parkinsons, MS and migraines (maybe?), and he was very interested and wanted to keep the article. Merlyn, you please let us know how it goes with the medical phlebotomy? Any questionsabout what I wrote, ask me. Daisyduck[/url]
Stanford received a five million dollar grant for their double blind (nothing from the MS Society) from a company in Ohio. I did not remember to ask about the phlebotomy but am still interested in hearing about a doctor who will do it as a medical procedure rather than a blood donation, and I wish you good luck and hope this will work out for you and that you will tell us about it. I did give Dr. Dake an article from the internet about two Spanish docs in Madrid who perform minor surgery around the brachial plexus not on veins but arteries in cases of Parkinsons, MS and migraines (maybe?), and he was very interested and wanted to keep the article. Merlyn, you please let us know how it goes with the medical phlebotomy? Any questionsabout what I wrote, ask me. Daisyduck[/url]
Well, naturopathic Dr. took 100 mL out yesterday... that makes 165 mL in the last two weeks. The first 65 mL did not seem to do anything much. Maybe a little bit less spasticity, but not dramatic, was still kicking at night. But last night after the 100 mL removal, no kicking... great reduction in spasticity yet again. So what the heck is going on? Am I removing lead, is there some symbiotic relationship between lead and iron, or is it simply have no tolerance for excess iron. All I know is that it works... I do not go back to the hematologist until July 7, so I don't know whether she has any insights, but if she does not, I will continue to try to keep my iron down to 15 ferritin... I am so grateful that this works, for whatever reason. Spasticity is just unbearable sometimes, plus it's dangerous because I tend to spaz out in places that are not safe to spaz out in, like the bathtub...
I am hoping the hematologist tests the ferritin again, because the naturopathic Dr. will not remove blood without current lab tests. I am also going to ask my GP if he will authorize monthly mini phlebotomies on regular basis as it gets expensive to go to the ND. I am also going to do a, yet again, heavy metals challenge test, this time using EDTA to see whether I am overloaded with lead still, even after all these years.
Anyway, the bloodletting worked yet again...
I am hoping the hematologist tests the ferritin again, because the naturopathic Dr. will not remove blood without current lab tests. I am also going to ask my GP if he will authorize monthly mini phlebotomies on regular basis as it gets expensive to go to the ND. I am also going to do a, yet again, heavy metals challenge test, this time using EDTA to see whether I am overloaded with lead still, even after all these years.
Anyway, the bloodletting worked yet again...
Merlyn
Glad it worked again for you!
What I find puzzling is the immediacy of the relief--I also had greatly relieved symptoms (though don't have spasticity) immediately--brain fog gone, needed only 5 hours sleep for the next three nights, much more brain and body energy--
It has been a month since phlebotomy, and the negative symptoms have been slowly returning. Will get my bloods tested day after tomorrow, to see if ferritiin decreased, which was the aim, and a CBC. Won't get results til next tuesday.
But the ferritin reduction doesn't come about until a few weeks after a phlebotomy--right after a phlebotomy, it is your red blood cells, hematocrit and hemoglobin that decrease--so an immediate decrease in circulating iron, but not yet in stored iron.
So, could it be that the circulating iron is a real problem also? I thought it was only the stored iron that was the problem, that it damaged the cells of the organs (heart, liver, etc) where there is excess storage.
I'll try to do some research on this. Seems very important. Because if this is the case, we need to keep not just the ferritin low, but maybe more importantly, stay at anemia level--ie, low RBC, low hematocrit, low hemoglobin.
Possibly zinc and/or copper deficiency involved in this problem? Both needed in regulation of iron. More research
Glad it worked again for you!
What I find puzzling is the immediacy of the relief--I also had greatly relieved symptoms (though don't have spasticity) immediately--brain fog gone, needed only 5 hours sleep for the next three nights, much more brain and body energy--
It has been a month since phlebotomy, and the negative symptoms have been slowly returning. Will get my bloods tested day after tomorrow, to see if ferritiin decreased, which was the aim, and a CBC. Won't get results til next tuesday.
But the ferritin reduction doesn't come about until a few weeks after a phlebotomy--right after a phlebotomy, it is your red blood cells, hematocrit and hemoglobin that decrease--so an immediate decrease in circulating iron, but not yet in stored iron.
So, could it be that the circulating iron is a real problem also? I thought it was only the stored iron that was the problem, that it damaged the cells of the organs (heart, liver, etc) where there is excess storage.
I'll try to do some research on this. Seems very important. Because if this is the case, we need to keep not just the ferritin low, but maybe more importantly, stay at anemia level--ie, low RBC, low hematocrit, low hemoglobin.
Possibly zinc and/or copper deficiency involved in this problem? Both needed in regulation of iron. More research
Last edited by shye on Thu Jul 08, 2010 2:37 pm, edited 1 time in total.
Four weeks since my last phleb and I'm just starting to get a bit of nerve pain again in my left arm. But still have heaps of energy and sleeping very well through the night.
I've read a lot on iron metabolism, but have been giving it a miss lately as I'm trying to get my life up to date with lots of chores needing done.
So I'm a bit rusty on it.
From what I read it's the free iron that can cause trouble. I got immediate relief too, even from small blood draws, I timed it at three hours from the blood draw, it was like I'd taken a recreational drug. I didn't get that high this time around so something has changed, but I'm much more stable, so that's good. The melanosis on my arms seems to be fading a bit. It's hard to tell as we are in mid winter here, and it may just be lack of sun. Although I also have the pigmentation spots on my gums, and they don't see the sun and they seem to be fading slightly too. Next summer will tell.
I've read a lot on iron metabolism, but have been giving it a miss lately as I'm trying to get my life up to date with lots of chores needing done.
So I'm a bit rusty on it.
From what I read it's the free iron that can cause trouble. I got immediate relief too, even from small blood draws, I timed it at three hours from the blood draw, it was like I'd taken a recreational drug. I didn't get that high this time around so something has changed, but I'm much more stable, so that's good. The melanosis on my arms seems to be fading a bit. It's hard to tell as we are in mid winter here, and it may just be lack of sun. Although I also have the pigmentation spots on my gums, and they don't see the sun and they seem to be fading slightly too. Next summer will tell.
This is a new study out on the HFE gene and MS.
HFE genes do not mean you are more likely to get MS, but if you do, it will be more severe?
HFE genes do not mean you are more likely to get MS, but if you do, it will be more severe?
http://www.ncbi.nlm.nih.gov/pubmed/20586792Eur J Neurol. 2010 Jun 24. [Epub ahead of print]
HFE gene polymorphisms and severity in Portuguese patients with multiple sclerosis.
Bettencourt A, Silva AM, Santos E, Gomes S, Mendonça D, Costa PP, Faustino P, Silva BM.
UMIB - Instituto de Ciências Biomédicas Abel Salazar (ICBAS-UP), Porto, Portugal.
Abstract
Background: High iron concentrations have been reported in oligodendrocytes, myelin and macrophages in multiple sclerosis (MS) lesions. It has been proposed that HFE gene polymorphisms could have a role in MS. Methods: The C282Y and H63D HFE variants frequencies were determined in 373 patients with MS and compared with a normal population. Results: No significant association was found between HFE polymorphisms and disease susceptibility. An analysis of the association of genotypes with disease severity was performed, and the C282Y allele was more frequent in the aggressive group. Conclusions: Patients carrying the C282Y variant seem to have a worse prognosis
thanks for the post, Bethr.
Guess I'm glad I am H63D--but is only one study of less than 440 people, so not sure if we can really conclude anything yet.
Just got my blood results from 3 weeks after phlebotomy.
2 days after phlebotomy: ---- 3 weeks after phlebotomy:
6/ll blood results (not fasting) ------ 7/1 blood results (fasting)
iron 110 ----- 53 (40-160)
TIBC 289---- 280 (250-450)
Tans Sat 38---- 19 (15-50)
Feritin 81---- 41 (20-288)
WBC 4.2---- 3.2 LOW (3.8-10.
RBC 3.44 LOW---- 3.58 LOW (3.8-5.10)
Hemoglobin 11.6 LOW---- 12.0 (11.7-15.5)
Hematocrit 33.6 LOW---- 35.1 (35.0-45.0)
I also stopped all red meat since got phlebotomy.
So, I don't think I will worry that can't give blood for another 4 plus weeks. --the trans sat is great now, the ferritin could be lower, but
I think If I gave more blood right now might bring the iron and trans sat too low--need to review the info on this. The only oddity is the WBC, which were okay immediately, but are decreased now three weeks later when they should have slightly increased (but the first bloods were not fasting, so could be this skews a bit). Otherwise, the hemoglobin and hematocrit are responding as they should.
Did feel better immediately after, have lost some of the great Energy gain.
But still my level higher than before doing the phlebotomy.
Will donate again on 8/4, and see if that gives a similar energy boost--then will know definitely on the right path with this; although definitely this is not the only thing need to do to feel better. Also suspect that will not need to give every 2 months after that, can possibly stretch out the time between a bit more.
Guess I'm glad I am H63D--but is only one study of less than 440 people, so not sure if we can really conclude anything yet.
Just got my blood results from 3 weeks after phlebotomy.
2 days after phlebotomy: ---- 3 weeks after phlebotomy:
6/ll blood results (not fasting) ------ 7/1 blood results (fasting)
iron 110 ----- 53 (40-160)
TIBC 289---- 280 (250-450)
Tans Sat 38---- 19 (15-50)
Feritin 81---- 41 (20-288)
WBC 4.2---- 3.2 LOW (3.8-10.
RBC 3.44 LOW---- 3.58 LOW (3.8-5.10)
Hemoglobin 11.6 LOW---- 12.0 (11.7-15.5)
Hematocrit 33.6 LOW---- 35.1 (35.0-45.0)
I also stopped all red meat since got phlebotomy.
So, I don't think I will worry that can't give blood for another 4 plus weeks. --the trans sat is great now, the ferritin could be lower, but
I think If I gave more blood right now might bring the iron and trans sat too low--need to review the info on this. The only oddity is the WBC, which were okay immediately, but are decreased now three weeks later when they should have slightly increased (but the first bloods were not fasting, so could be this skews a bit). Otherwise, the hemoglobin and hematocrit are responding as they should.
Did feel better immediately after, have lost some of the great Energy gain.
But still my level higher than before doing the phlebotomy.
Will donate again on 8/4, and see if that gives a similar energy boost--then will know definitely on the right path with this; although definitely this is not the only thing need to do to feel better. Also suspect that will not need to give every 2 months after that, can possibly stretch out the time between a bit more.