Jimmylegs,
not trying to belabour this, esp since doesn't belong in this thread, but of course all that you saw of niacin was re the flush effect, because that is what you were googling-
Niacin works for scizophrenics, whether flush or not--the flush test was precisely that--why do some schizophrenics flush and some not? And it had to do with fatty acids.
But you can't extropolate from info on the flush aspect of niacin to info on niacin's overall effect on schizophrenia--they are two separate things.
Phlebotomy anyone?
for new readers, a second phlebotomy topic has been started.
shye i am aware that niacin has various therapeutic effects. on this particular tangent i only mention in passing my interest in the fact that absent flush response turned out not to be from niacin deficiency, but from PUFA deficiency.
please feel free to pm me if you want to discuss further.
shye i am aware that niacin has various therapeutic effects. on this particular tangent i only mention in passing my interest in the fact that absent flush response turned out not to be from niacin deficiency, but from PUFA deficiency.
please feel free to pm me if you want to discuss further.
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Well dr. said can't have HH cause sx are liver and diabetes.No bloody wonder we are so sick....also said brain lesions are not from iron and who is Zamboni?Help they are killing me..they managed to get test results iron pannel..he said they're good...told him brother has hh and demanded req. for genetic bl. tests for hh and porph. I'm wiped out from argueing with these people..ignorance will be my death sentence..will post iron numbers....
smell from iron overload
I have an odd question.With ms I don't really sweat but i have a distinctivevmetallic scent especially under arms etc. After i wash of course I am clean but my scent ggets very strong even my urinre deffinately metallic.It seems to impregnate cotten shirts and is difficult to wash out. It is not how i used to smell.Anyone else notice this? Barbara
oh and the leeches made me feel better but very messy. only short term improvement still waiting for deferiprone.
barbara
oh and the leeches made me feel better but very messy. only short term improvement still waiting for deferiprone.
barbara
Katie-maybe I should not have done this, but I started another thread called MS/phlebotomy because I was finding that the subject of phlebotomy as a treatment for MS was getting drowned out by all kinds of other discussions on zinc or niacin flushes or anything else I personally was becoming very concerned that newcomers would not wade through all of the other information... I don't know how to keep the discussion focused. I don't know what your iron panel means, except that it is abnormal. The TIBC is so high and I am not educated enough to comment on it. It absolutely sucks that you Dr. said it was all okay when it is not... I will try to figure out... it looks almost like iron loading anemia, but I have to do some further investigation.
Jimmylegs-last time I had zinc tested was in June 2008... my level was 10.9 reference range 9.2-26 umol/L
An excess of zinc is immunosuppressive, and I am wary of overloading on any metal. Plus the fact that I did not seem to absorb most zinc supplements, they did nothing to move the serum levels up. I am a blood type A., and I understand that this is a good range for me to be in. High levels of zinc are known to speed up AIDS. I only take 15 mg of zinc a day, oddly enough more than that makes me feel tired.
An excess of zinc is immunosuppressive, and I am wary of overloading on any metal. Plus the fact that I did not seem to absorb most zinc supplements, they did nothing to move the serum levels up. I am a blood type A., and I understand that this is a good range for me to be in. High levels of zinc are known to speed up AIDS. I only take 15 mg of zinc a day, oddly enough more than that makes me feel tired.
We are still here Katie. No worries 
.
I agree with Merlyn re starting a new thread, that is right to the point. The treatment is simple, and this thread has got so large, It would put a lot of people off. Maybe keep the sidelines and investigation in here and keep the other thread a bit more pure (don't know how we will keep it up at the top of the list though
).
I have come across a very interesting study
http://online.haematologica.org/thj/2004/6200332a.pdf
Non-transferrin-bound serum iron (NTBI) in megaloblastic anemia:
effect of vitamin B12 treatment
It concerns non-transferrin bound serum iron, and gives one a look into the anemic side of over-loading. These people will not have high ferritin. The treatment is B12. (I'll leave that to you experts).
I am feeling wonderful again. I just power walked one mile straight uphill, arrived home and got straight into other work. I'm not an exercise freak, I assist on the local "Walking School Bus".
Hopefully the heart symptoms are now gone. The exercise really helps I think. Maybe I utilise iron during the exertion?
I'm following the lead of this "non-transferrin iron", iron that freely circulates, i suppose the free-radical type, caausing micheif and overload in organs. It seems it can do some damage, and you shouldn't have any at all in serum. I feel another blood test coming on. I just wish they had actually done something when I was really sick and forming a brain lesion in 2008. It's a bit late now, my problems seem to be abating fast and my blood in probably looking more normal. My transferrin saturation has been dropping since 2008, and I'm probably below 50% by now. We'll see next week, I'm sure I'll get a barabge of needles pointed at me. Hmmmmm...nice.........I think my hyperpigmentation is looking faded, I hope it last till next Tuesday (joking, I'm sure it can't fade that fast). I just don't want to be confronted with another skeptical doctor. That is the hardest part for me. The research is easy.
Another interesting test for me when I'm all better, would be to look at the brain lesion again, and see what's happened to it. If it is Porphyria it should go away. Or is it MS? I'm beyond caring as I feel great, and that is what matters.
.I agree with Merlyn re starting a new thread, that is right to the point. The treatment is simple, and this thread has got so large, It would put a lot of people off. Maybe keep the sidelines and investigation in here and keep the other thread a bit more pure (don't know how we will keep it up at the top of the list though
).I have come across a very interesting study
http://online.haematologica.org/thj/2004/6200332a.pdf
Non-transferrin-bound serum iron (NTBI) in megaloblastic anemia:
effect of vitamin B12 treatment
It concerns non-transferrin bound serum iron, and gives one a look into the anemic side of over-loading. These people will not have high ferritin. The treatment is B12. (I'll leave that to you experts).
I am feeling wonderful again. I just power walked one mile straight uphill, arrived home and got straight into other work. I'm not an exercise freak, I assist on the local "Walking School Bus".
Hopefully the heart symptoms are now gone. The exercise really helps I think. Maybe I utilise iron during the exertion?
I'm following the lead of this "non-transferrin iron", iron that freely circulates, i suppose the free-radical type, caausing micheif and overload in organs. It seems it can do some damage, and you shouldn't have any at all in serum. I feel another blood test coming on. I just wish they had actually done something when I was really sick and forming a brain lesion in 2008. It's a bit late now, my problems seem to be abating fast and my blood in probably looking more normal. My transferrin saturation has been dropping since 2008, and I'm probably below 50% by now. We'll see next week, I'm sure I'll get a barabge of needles pointed at me. Hmmmmm...nice.........I think my hyperpigmentation is looking faded, I hope it last till next Tuesday (joking, I'm sure it can't fade that fast). I just don't want to be confronted with another skeptical doctor. That is the hardest part for me. The research is easy.
Another interesting test for me when I'm all better, would be to look at the brain lesion again, and see what's happened to it. If it is Porphyria it should go away. Or is it MS? I'm beyond caring as I feel great, and that is what matters.
There is a lot written about it, just google "porphyria brain lesions".
Heres an eg below. You can see why this genetic condition could be mistaken for MS. In this study some had lesions, even though they just carried the gene, and had suffered no acute attacks.
Heres an eg below. You can see why this genetic condition could be mistaken for MS. In this study some had lesions, even though they just carried the gene, and had suffered no acute attacks.
Brain magnetic resonance imaging white-matter lesions and cerebrospinal fluid findings in patients with acute intermittent porphyria
Auteur(s) / Author(s)
BYLESJÖ Ingemar (1) ; BREKKE Ole-Lars (2) ; PRYTZ Jan (3) ; SKJEFLO Trine (3) ; SALVESEN Rolf (1) ;
Affiliation(s) du ou des auteurs / Author(s) Affiliation(s)
(1) Department of Neurology, Nordland Central Hospital, Bodö, NORVEGE
(2) Department of Medical Biochemistry, Nordland Central Hospital, Bodö, NORVEGE
(3) Department of Radiology, Nordland Central Hospital, Bodö, NORVEGE
Résumé / Abstract
Background: Case reports display similarities between multiple sclerosis and acute intermittent porphyria (AIP). This study examines whether patients with AIP in general demonstrate white-matter lesions on brain magnetic resonance imaging (MRI) and/or abnormalities in plasma and/or cerebrospinal fluid (CSF) when examined outside attacks. We looked particularly for the presence of oligoclonal bands (OB) of immunoglobulin (Ig) in liquor. Methods: Eight AIP gene carriers without previous episodes of porphyria, mean age 42.8 years (range 30-60), and 8 AIP gene carriers with previous episodes of porphyria, mean age 42.8 years (range 33-62), were examined with brain MRI, venous blood samples and lumbar punctures. Results: Two male AIP gene carriers with previous episodes of porphyria, 58 and 35 years of age, had multiple white-matter, high-signal lesions on T2-weighted MRI sequences. Two AIP gene carriers without previous episodes of porphyria, 1 male and 1 female, had less than 5 such lesions. No OB were seen in the CSF in any patient, but 1 carrier had an increased level of protein in the CSF. Seven of 16 subjects (44%) had increased levels of HbA1c (>6.0), suggesting protracted hyperglycemia, and 3 further subjects had borderline levels (5.9). Conclusion: T2-weighted MRI sequences demonstrated multiple white-matter, high-signal lesions in 4 out of 16 AIP gene carriers (25%). No carrier demonstrated OB of Ig in CSF, making it unlikely that demyelinating lesions play a pivotal role in the pathogenesis of CNS symptoms in AIP. Only 1 AIP gene carrier had an increased level of protein in CSF; this contrasts with studies during acute attacks of porphyria. Seven subjects (44%) had abnormally high levels of HbA1c, in spite of the fact that no patient had a previous diagnosis of diabetes mellitus.
Revue / Journal Title
European neurology ISSN 0014-3022 CODEN EUNEAP
Katie... my ND yesterday did not seem all that "up" on iron metabolism... and I think I kind of overwhelmed her with a major dump of information, so she was not helpful... she said she has one patient with MS, and she would run iron metabolism panel on that person and if there were irregularities, she would let me know... but realize all of this stuff is so new that it is not going to be easy finding educated people... and I am not a doctor or an expert..
http://www.nlm.nih.gov/medlineplus/ency ... 003489.htm
What Abnormal Results Mean
TIBC is usually higher-than-normal when the body's iron stores are low. Higher-than-normal TIBC may mean:
Iron deficiency anemia
Pregnancy (late)
What I do know is that your transferrin is normal, so your problems are different than mine, and I cannot advise because I have no clue what is going on with you... I think you may have some form of iron loading anemia, plus the low weight blood count may indicate some form of gastrointestinal condition... but I am not qualified in any sense to recommend anything... your iron panel is very different from the hemochromatosis panels that are showing up... your saturation is perfectly normal at 25%
http://www.nlm.nih.gov/medlineplus/ency ... 000584.htm
http://www.nlm.nih.gov/medlineplus/ency ... 003489.htm
What Abnormal Results Mean
TIBC is usually higher-than-normal when the body's iron stores are low. Higher-than-normal TIBC may mean:
Iron deficiency anemia
Pregnancy (late)
What I do know is that your transferrin is normal, so your problems are different than mine, and I cannot advise because I have no clue what is going on with you... I think you may have some form of iron loading anemia, plus the low weight blood count may indicate some form of gastrointestinal condition... but I am not qualified in any sense to recommend anything... your iron panel is very different from the hemochromatosis panels that are showing up... your saturation is perfectly normal at 25%
http://www.nlm.nih.gov/medlineplus/ency ... 000584.htm
Katie-have you ever been tested for celiac disease? The low WBC could be due to that condition, and so could your iron panel/borderline anemia. Anybody ever run those tests on you? I had a test years ago that was at the time the best they had... it tested for antigliadin antibodies and anti- endomysial antibodies... antibodies that destroy the gut lining due to celiac disease... considering Chris Whittington's work that says the mutant gene for hemochromatosis was actually in response to the prevalence of celiac disease in the Celtic population, maybe that could be your profile... but, I am also not an expert in celiac disease!