Phlebotomy anyone?
Trent-I think they just watch the numbers from the blood test. On hemochromatosis forum, they just keep bloodletting until the ferritin gets down to 10 and does not recoup I think. When they start out they have no idea just how many phlebotomies will be needed to de-iron a given individual. I think with the normal hemochromatosis profile, there is more of a ferritin elevation than we are seeing. Who knows why? Each body stores iron differently, absorbs it at a different rate. I am going to try to pick up my iron test today that was run after my first phlebotomy and see what it looks like. I really enjoyed talking to Steve, he was so upbeat about recovery. Have seen many many people recovered neurologically, so the iron must come out of the brain eventually. I think I can lift my arms slightly better, and my feet were a better color last night, but I expect it will take quite a few phlebotomies to resolve 50 years of iron loading. I do not expect doctors to understand our conditions, after all this is as new to them as it is to us... they have not made the link to hemochromatosis/MS, it is us that discovered it. So expecting them to know how to treat us is not realistic in one sense. And hemochromatosis I gather is totally underdiagnosed, I have read many blogs of people with hemochromatosis that say they diagnosed themselves rather than the doctors. Unfortunately, we are the first to be looking for treatment with MS/hemochromatosis.
Please accept my correction, I exaggerate when I say we discovered the link between hemochromatosis/MS, but I do think we are the first to treat it with phlebotomy. And I do not know yet of course just how effective is going to be, I just know that this is the best thing I've ever done.
http://www.bmj.com/cgi/content/full/327/7407/132
Introduction
Hereditary haemochromatosis is a common autosomal recessive disorder of iron metabolism. Most patients are homozygous for a C282Y mutation in the HFE gene. This mutation is frequent in northern Europe, where one in five to ten people are carriers. People who are heterozygous for the C282Y mutation have slightly but significantly higher values for serum iron and transferrin saturation and are less likely to have anaemia because of iron deficiency.1 2
Iron promotes the generation of free radicals, which leads to mutagenesis, atherosclerosis, inflammation, and bacterial growth. Therefore, genotypes that increase the concentrations of iron for transport and storage may be associated with an increased risk for common diseases, such as cancers and cardiovascular diseases, and for inflammatory and infectious conditions. Other studies, which investigated the associations of C282Y heterozygosity with morbidity, found conflicting results, and consensus has not been reached about whether C282Y is associated with the development of extrahepatic cancers, coronary heart disease, or diabetes.1 2
We hypothesised that people who are heterozygous for the C282Y mutation are under-represented in a centenarian population because many would have died younger from life threatening diseases which are more prevalent in C282Y heterozygotes.
This is what is going to be needed, trial phlebotomy. See how we react to it if it is indicated as being safe by the hemoglobin etc. the doctors are going to have to run iron panels, and treat, and see what improvements can be noted. Maybe the NDs will be more open to this approach, because they are more inclined to believe in "it's what you put in, or what you take out!"
http://www.medscape.com/viewarticle/535644_3
From a practical perspective, the clinician should not get too immersed in the debate about whether an individual case has 'haemochromatosis' as this is largely a semantic debate. The focus should be on identifying treatable causes of iron overload and initiating the appropriate diagnostic tests and therapies in the patient and other affected family members. It should also be noted that different genetic mutations causing iron overload may also have different clinical consequences and response to iron depletion therapy.
Trent-I don't know what to think of this whole thing on some levels. I stopped by a seniors care Center yesterday to talk to a former caregiver, who turned out to be on her day off, but I got talking to the owner. I explained recent findings about the link between MS and hemochromatosis and my experimental treatment. She thought it made so much sense, which it does, but the thing is who would believe it? We are just some people with MS that have uncovered a probable cause of MS and have no credentials/PhD's behind our names. That is why did some form of publicity/exposure. And the whole thing is so ridiculous, we are identified through the iron metabolism panel has people who have been overloading iron for decades and should just be treated like we have iron overload/hemochromatosis. But we are "MS" labeled and it is going to be a rather long haul I think. And then, how expensive could it possibly be to run the clinical trial of phlebotomies as a treatment for those identified with iron overload! It would be a fraction of the cost of the Buffalo studies, and would probably get astounding results.
My last phlebotomy had different results. It did not seem to affect spasticity so much, it has stayed basically the same. What has become obvious is that my skin is getting lighter, that brownish tan has faded. I seem to have better upper body strength in that I was having problems keeping my left arm in the chicken wing posture that is required to keep my elbow on the arm of the wheelchair. My left arm has wanted to maintain a L position, with my forearm lying across my lap. It has been taking a great deal of effort to keep the elbow on the arm of the wheelchair. Yesterday I went into town (about a 25 minute excursion to get to the waterfront) and back without any problem with my elbow pulling inward so that my whole arm falls into my lap. Also my arms seem to be listening better when I want to move. It's hard to describe, it is like my limbs and brain are communicating more normally. Which tells me that it is going to take a great number of phlebotomies to get rid of the physical symptoms, and I don't think I am going to get adequate treatment... not with my present doctor who is not a hematologist. We are all going to be in the same boat, understanding what we have to do, but not finding medical professionals on the same wavelength.
My last phlebotomy had different results. It did not seem to affect spasticity so much, it has stayed basically the same. What has become obvious is that my skin is getting lighter, that brownish tan has faded. I seem to have better upper body strength in that I was having problems keeping my left arm in the chicken wing posture that is required to keep my elbow on the arm of the wheelchair. My left arm has wanted to maintain a L position, with my forearm lying across my lap. It has been taking a great deal of effort to keep the elbow on the arm of the wheelchair. Yesterday I went into town (about a 25 minute excursion to get to the waterfront) and back without any problem with my elbow pulling inward so that my whole arm falls into my lap. Also my arms seem to be listening better when I want to move. It's hard to describe, it is like my limbs and brain are communicating more normally. Which tells me that it is going to take a great number of phlebotomies to get rid of the physical symptoms, and I don't think I am going to get adequate treatment... not with my present doctor who is not a hematologist. We are all going to be in the same boat, understanding what we have to do, but not finding medical professionals on the same wavelength.
I so want to do this... or at least every other week. These are my numbers after the one phlebotomy, I don't know what it all means except that I would expect RBC, hemoglobin, hematocrit to show the results of that blood removal.Really the proper protocol for treating iron overload is to have weekly phlebotomies until the measure for storage iron comes down below 20. Steve Barfield
WBC 6.0 reference range 4.0-10.5
RBC 3.65 L reference range 3.80-5.20
Hemoglobin 115 L reference range 120-150
Hematocrit 0.33 L reference range 0.35-0.45
mean cell volume 91 reference range 82-98
Red Cell Distribution Width 13.4 reference range 12.1-14.5
platelet count 251 reference range 150-400
Neutrophils Absolute 4.16 reference range 2.00-6.00
lymphocytes absolute 1.39 reference range 1.00-4.00
monocytes absolute 0.42 reference range 0.10-0.80
Eosinophils absolute 0.01 reference range 0.00-0.45
Bosophils absolute 0.02 reference range 0.00-0.10
ferritin was 37
Oh, the other thing I have noticed is that when I fully extend my legs, it does not hurt so much. I noticed that the first night, I often have my husband raise my legs up to place my heels on his shoulders, he is about 6'2", so this works well as a type of angle therapy. But I am generally so stiff it really is painful to do this and we have to do in graduated because otherwise I totally spaz out. This has been much easier and less painful, we are not talking total alleviation here, just I would say 20 to 30% reduction, but it is still a relief. And I realized last night that I too am going to have some mental readjustment, considering that I thought all of this spasticity was due to magnesium deficiency! I've tried every type of magnesium on the market, I even nebulized it trying to get into my system, no results... there is no way that what I am experiencing could be a correction of magnesium deficiency. It's all kind of Alice in Wonderland, interesting but kind of surreal. I was so pleased yesterday going into town on my wheelchair and being able to maintain a posture without effort... how do we get the people to get the help that we all need? These changes are so fast, it is hard to get my head around it. And where is ForeverSpring? Anybody heard from this person that did two phlebotomies?
The other thing I am trying to figure out is that I started to menustrate, and I don't know what this means as I am in menopause for two years. They could be unrelated I have no idea, but it will probably freak my Dr. out, my guess is reduction of iron has allowed some form of hormone regulation to kick up again, but I am totally in the dark...
The other thing I am trying to figure out is that I started to menustrate, and I don't know what this means as I am in menopause for two years. They could be unrelated I have no idea, but it will probably freak my Dr. out, my guess is reduction of iron has allowed some form of hormone regulation to kick up again, but I am totally in the dark...
My sister stopped her periods in her thirties when she got MS. She's been in remission for about five years now (since cutting down on red meat she thinks), and her period just came back too, after all those years. She said it's quite heavy too, at 54 yrs old. She feels really well, just the fatigue to still beat for her, and with ferritin at around 160 she really needs to have this done, even just as a trial to see if it works. She has iron to spare so she should handle it easily.
If only they will do it. She said she will approach her doctor and sound him out. She's already in contact with the MS society and Blood donor service.
If only they will do it. She said she will approach her doctor and sound him out. She's already in contact with the MS society and Blood donor service.
I have never been 'officially' dxed with ms....the last letter I rec'd was from dr. paty (deceased) stating ms was still in question...the rest of the drs just ran with it. At my last neuro apt. Dr. spacey at ubc asked who told me it was ms. I said Paty as it has been 30yrs since his assumption and no other suggestions since. Spacey offered nothing different.Also saw dr. devonshire for mri results which was horrifying for my dghter also no opinion/comment from her.Wonder if this means I could donate blood?
I'm a "single event" girl, so no DX for me. The only reason they were keen to put a label on me was because of my sister, and we share the same Nuerologist. So maybe you could donate blood if they can't prove a DX. Worth trying, just don't mention it to them. Is there a true DX for MS anyway, it's just symptoms ultimately.
Bethr. I see this as the same problem msers are having with ccsvi Zamboni should Never have linked the vascular problem to ms...which instantly involved neuros and all their labels instead of simply fixing (in this case) the iron metabolism problem...the neuro problems in both cases are effect not cause. I can see a long battle ahead to fix a straightforward and simply logical problem/while people suffer and die waiting.
Katie-I agree, I mean who are we to have figured anything out? The thing is, we can identify the people that are overloading iron. It is also apparent that this is not everyone's problem, that woman on the histamine board was able to donate 500 mL in seven minutes! She might have a different form of iron metabolism problem, but I don't think she has thick blood... it takes me 20 minutes, and it seems to me when I think back over my long history, nurses used to comment on how thick/red my blood was, these to call it "rich". I also feel very ethically torn, putting out the possibility of recovery, but that would depend on finding a Dr. that would be willing to treat properly. When I woke up this morning, it is like my brain is telling me to get rid of more iron, that I can handle the phlebotomy on a weekly basis. There is no way in hell my Dr. will go for that. So what to do?
The other improvement I am noticing is better bladder emptying, not great, not normal, just improving.
The other improvement I am noticing is better bladder emptying, not great, not normal, just improving.
I agree, and it will take time. But I'm willing to do my bit down here in NZ. This has been such an amazing fix for me, I really have to pursue it to the hilt. If there is anybody out there that this can help, then they need to know. it's such a trivial matter to take blood from someone with reasonable iron stores, so simple. I've achieved more in the past six weeks, physically than I have in the past two years! There must be so many people out there who like me were a drag on the economy, that could become productive.
When I think of all the time I've missed with my kids, it makes me quite angry that I could have been fixed two years ago, if there had been more knowledge about this in the medical profession.
Being from a small country can be a disadvantage, but the plus is we are a small community by world standards and I may be able to get the news out more easily.
I'm hopeful again.
I wrote to the chap Merlyn has been talking to at the Iron Overload Diseases Association in the US, giving him my details and copies of my blood tests. He replied that from my tests I do need treated for hemochromatosis and I need to get a new doctor. He also stated that C282Y heterozygotes can load iron and need treatment. He also advised me not to donate blood until I get a diagnosis. That would be a hard one for me, as it's hard to let myself go back in the black abyss. I never want to go there again!
When I think of all the time I've missed with my kids, it makes me quite angry that I could have been fixed two years ago, if there had been more knowledge about this in the medical profession.
Being from a small country can be a disadvantage, but the plus is we are a small community by world standards and I may be able to get the news out more easily.
I'm hopeful again.
I wrote to the chap Merlyn has been talking to at the Iron Overload Diseases Association in the US, giving him my details and copies of my blood tests. He replied that from my tests I do need treated for hemochromatosis and I need to get a new doctor. He also stated that C282Y heterozygotes can load iron and need treatment. He also advised me not to donate blood until I get a diagnosis. That would be a hard one for me, as it's hard to let myself go back in the black abyss. I never want to go there again!