We know way too much for anyone to be suffering

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Here is a recent posting from Johns Hopkins Medical University.  If you are really suffering you will really read the whole article which is about one page.  Then let your imagination go as well as your googling.  Whatever you find that helps your RLS or might help google that item and "dopamine release" or "dopamine receptors."  The bottom line is we all have lousy dopamine receptors most likely due to our brains inability to get and retain enough iron, even though our bodies' stores of iron may be normal or high.  You gotta get that iron across the blood brain barrier.  And whatever you take probably has to have the ability to cross the blood brain barrier be it potassium or magnesium or calcium.  Just as important is what you should not be taking such as antihistamines, antidepressants, antacids, statins, melatonin and sugar substitutes to name just a few.  The best treatment may be simple calorie restriction and going to be hungry.  Even if it doesn't give complete relief you may be able to undereat and then take a small amount of medication, or iron or potassium to get you the rest of the way to sleep. 

http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/restless-legs-syndrome/what-is-rls/causes.html

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  • Posted

    I tried some N-acetyl cysteine at one time to try to lower my glutamate. No change to my RLS.

    Besides continuing the biochemistry we really also want to know about who gets RLS. Is it genes, genes plus environment, those who have led a particular lifestyle (too fat, too thin; little exercise, athletes; teetotallers, regulars at the pub; calorie restricted diets, carbohydrate restricted diets, fat restricted diets, protein restricted diets, vegetarians, heavy meat eaters, vitamin poor diets, mineral poor diets; anxiety limited; stress limited; sleep limited; academic, skilled, unskilled). What drugs sufferers have taken. What other medical conditions they have suffered from.  What is the frequency of occurrence in different parts of the country, different parts of the continent, different parts of the world and what is different about these different places?

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    • Posted

      Why?  Dead men don't lie.  The autopsies showed that our dopamine transport system/receptors are puny...almost as puny as our brain iron levels.  Go poll people all over the world if that's your thang but as for me, I'm avoiding ALL of the no no substances, I'm taking iron bis-glycinate or potassium during an attack, I'm going to give under-eating a shot, and I'm waiting for all of you out there in the RLS world to start figuring out ways to up-regulate our receptors.  Any ideas Robert?
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    • Posted

      Hey, nice try with the cysteine!!!  That's what I'm talking about.  It is supposed to normalize glutamate levels in the brain.  It is also supposed to help protect our dopamine transporters from diminishing after repeated exposure to substances like cocaine.  But it might backfire if taken at night?  When did you take it?  Maybe it's a substance you take every morning for a few months and then see if there's any difference?  Hopefully we'll have more people on here doing research in this regard as you have.  In the meantime, like I said, there are things that are a short term solutions such that no one should be putting a gun to their head. Undereating should help, potassium helps, iron bis-glycinate helps, quinine helps, orgasm helps.  Figure out a way to get iron to your brain or a natural way to squeeze some dopamine out at night and we will all sleep alot better.  Then the real work begins.  Exercise is supposed to increase receptors - not at night.  Uridine Monophospate is supposed to increase receptors - not at night.  Magnesium, if it crosses the blood brain barrier might increase receptors, not at night.  Most things that increase receptors do so it seems by ANTAGONIZING temporarily the release of dopamine.  So just like dopamine agonists (mirapex) down-regulate our receptors, dopamine ANTAGONISTS like magnesium just might increase our receptors which should provide relief.  Hot peppers are supposed to cause a release of dopamine and hence are addicting, but might be a better option than the DAs when you're trying to get some sleep at night.  Keep searching Robert  
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    • Posted

      Yours, Udon, is a slightly special case, of course, in that it responds to iron supplementation. Eating, and possibly more so eating carbohydrates, like orgasm, increases dopamine production, and increases iron transport, so maybe you'd need to be careful how you go on about that. But if our receptors can work properly in the morning, there must be a reason they don't later in the day and during the night. Do we just become understimulated as the day goes on?
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    • Posted

      There is a known correlation between the incidence of RLS and latitude. There are far fewer cases as you move towards the equator. The occurrrence is only 0.2-0.7% in Africa compared to 3.2% to over 18% in Europe, and it's much lower in Turkey and Greece than in France and England where it's lower than in the Scandinavian countries.
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    • Posted

      There have been numerous correlations made between the rise in use of antidepressants in the Scandinavian countries and RLS.  I think we with RLS are pre-disposed to it, and certain people from certain families and certain countries have a higher incidence of that pre-disposition, but then it takes an environmental trigger.  I bet RLS is almost non-existent among the aborigines of the Amazon but give them anti-histamines and anti-depressants, especially to the older members, and RLS will rear its ugly head.
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    • Posted

      I believe that iron levels have a circadian rhythm.  Serum iron levels drop off in the evening and begin to rise again after 3am.  As we age so do our bodies (duh) including our dopamine receptors.  Everyone's receptors age, however, I believe that we with RLS feel it more acutely.  So yes, there are numerous factors to consider, but I think we have covered alot of them.  DONT take antidepressants, we see how well that worked out for the scandanavian countries.  Don't bother having an orgasm in the morning if you suffer from RLS at night.  I believe the same is true for iron and potassium and of course the DAs.  Since all RLS brains are anemic, allegedly, then if we can get some iron to our brains (not just our bodies) at the right time it should help an awful lot of people.

      Iron infusions have had an amazing success rate at Johns Hopkins.  Only I don't think they quite know why.  They think the infusions work because they get people's iron stores to ridiculously high levels, like 300.  They think the higher the better.  According to Dr. B, people leave the hospital and can throw away their DAs.  I think the infusions work (especially now that they've stopped using iron sucrose which won't cross BBB) because while that iron is circulating in the blood stream our brains can pick it up, store it (for however short a period of time) and our receptors can feed off of it and grow big and strong...maybe even sprout some new ones.  Iron infusions are the super colossal version of my one pill at night idea.  And then if infused patients actually throw away their DAs and opiates all the better because these are just a drag on their receptors.  Eventually (6months, 12 months) the infused patients receptors wither on the vine because that is what RLS is all about...we can't call up enough iron from our stores to keep them healthy.  If we could then there would be no such thing as RLS.  So back to the hospital for infusions they go.

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    • Posted

      Penn State's Hershey Medical Center (and others?) state:

      – The cells forming the Blood Brain Barrier are a reservoir for iron not a simple conduit.

      – The reservoir allows for fluctuations in serum iron status not to effect immediate brain iron needs. Serum iron circadian rhythms for example.

      – In RLS the reservoir is empty.

      The question, it seems, is whether or to what extent it's to do with signaling processes involving the likes of iron regulatory protein 1 (IRP1) and hepcidin.

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    • Posted

      XO.  You're brilliant not only for thinking to look up about the BBB but for understanding it enough to ponder whether the problem might have more to with the processing of of the regulatory protein IRP1.  My puny brain will take days of reading and thinking to comprehend the signaling system in the brain.

      I have already spent weeks on hepcidin and for a long time thought that was at the bottom (not the very bottom) of the lack of iron in the brain.  Hepcidin is the iron gatekeeper.  It's a hormone that is released when the liver (I believe) senses an enemy be it an infection/micro-organism or cancer or other auto-immune diseases.  When the liver senses it's under attack it releases hepcidin to thwart the enemy because our bodies know intrinsically that every living organsim needs and loves iron.  By withholding iron from being released  into the bloodstream (from our stores and even the GI tract) our body is literally trying to starve out the attackers.  Quite amazing.  However when the liver always thinks it's under attack, maybe because we have a rowdy gut microbiome, then we might always have RLS.  But not everyone who comes down with a terrible infection and has hepcidin up the wazoo is going to suffer with RLS, right.  What's kind of amazing is how high the numbers go when you start looking at people with end stage renal disease.  Greater than 50% develop RLS.  However in India, even among people with end stage renal disease, the percentage of people with RLS is still in the single digits according to one study I read.  That goes back to the things you would like to know about demographics and how a cure or a damn good treatment might lie somewhere in the Indian or African lifestyle.  As far as India goes I think it's all the spice, especially tumeric...just a guess smile

       

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    • Posted

      Wow, our reservoir is empty.  Thank you for sharing that information.  My puny brain needs time to process that protein signaling thing.  I do understand about hepcidin, the iron gatekeeper as I like to call it.  Hepcidin is released from the liver in the face of infection or even cancer.  The hepcidin which is a hormone is able to regulate, or flat out stop, iron from getting into our bloodstream, either via our stores or the food in our stomachs.  Every living thing loves and needs iron so by making our blood devoid of it, the infection has a hard time surviving.  Quite an amazing defense mechanism.  But in the meantime we get RLS... maybe.  The vast majority of the world can develop a horrible infection have hepcidin coming out of their ears yet never develop RLS.  So I guess the question is for those of us who are predisposed to RLS and can't handle any drop in serum iron, is it possible that our bodies always think it's under attack and we always have too much hepcidin floating around.  That gets back to my belief that it is the world of the very small, our gut microbiome, our skin micobiome, the microbiome in our eyes, that are at the helm, not us.
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    • Posted

      Speaking of demographics, it seems that studies of people with end stage renal failure are upwards of 50% in terms of RLS.  It's almost like there's a point of no return.  If we're so sick, and there's so much hepcidin in our bodies and so little iron, then just about anyone can fall prey to RLS.  BUT in India, one small study of patients with end stage renal disease showed that RLS was still in the single digits among them.  Is it all that tumeric?  So yes, studying demographics is very worthwhile but we know so much about the nuts and bolts of RLS that I say let us all figure out a way to fill that reservoir, be it by lowering the hepcidin in our bodies, lowering glutamate etc.  But in the meantime, we need immediate and continuous relief so that we can explore more deeply.  The problem I have is that people take a prescription drug and sit on their hands and pray that it continues to work (that includes my iron-bisglycinate) rather then continuing the journey to wellness.  Or they criticze the use of bananas or bars of soap or mustard in water (tumeric wink.   Of course bananas work, they have potassium.  Not sure what it is about a bar of soap but I have a friend who says that every morning it is the smell of a fresh newspaper that allows him to go to the bathroom.  No paper, no visit to the restroom. 
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    • Posted

      Sorry for repeating, it seemed that my first post above didn't make it so I re-wrote info.  Now you guys have everything in triplicate.
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    • Posted

      Something else we might well be looking at it seems is mitochondrial functioning:

      "...  increased numbers of mitochondria in neurons in RLS and increased FtMt [mitochondrial ferritin] might contribute to insufficient cytosolic iron levels in RLS SN [substantia nigra] neurons; they are consistent with the hypothesis that energy insufficiency in these neurons may be involved in the pathogenesis of RLS.

      ... the present data indicate that FtMt levels and mitochondrial numbers are increased in the SN in RLS. The augmentation in mitochondria may reflect cellular attempts to correct metabolic insufficiency in these cells, which in turn may lead to cytosolic iron deficiency."

      (From a 2009 scientific paper by Snyder, Wang, Patton et al.)

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    • Posted

      No comprendo.  From 2009, that part I understand.  The International Restless Leg Foundation had a symposium in October 2015 and summaries of that meeting are now on the internet.  I would post it here but it will never get past the administrator.  It's long and somewhat difficult to understand but most of the buzz is still around iron.  There's talk about those genes they discovered and one of them they believe has something to do with iron management but what's interesting is 75% of RLS patients have that gene but so does 65% of the control population that has no symptoms of RLS.  They suspect there are more genes out there that they will find someday.  Lastly they debate the protocol and first line treatments for RLS.  DAs versus opiates versus Gaba.  Even the excess glutamate they believe is not a cause of RLS but a by-product of iron insufficiency - if I read the article correctly.

      Well I'm out of cream of tartar.  My second favorite RLS treatment.  I want a break from the iron.  I'm off to the baking section of the grocery store.  You never told me what you're doing for your RLS?

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    • Posted

      What Snyder et al are saying is that the mitochondria, the energy generating element of a cell, is hogging all the iron, so there is not enough iron for other processes, i.e everything except the mitochondria is iron deficient. How it happens is not understood.

      There's a 2013 review article "Mitochondrial ferritin in neurodegenerative diseases" in Science Direct.

      I take 2 mg ropinirole mid-afternoon and another 2 mg maybe an hour before bed to control my RLS. Gabapentin doesn't work nor any supplement I've tried.

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    • Posted

      I will have to read the article.  The dots in my brain aren't connected yet.  I would expect other organs, including our stores to show signs of anemia if we have iron hogging mitochondria.  Would Parkinson patients have just the opposite then?  Their brains have toxic levels of iron.

      Is your RLS well-controlled with the Ropinirole?  Some people say that iron or iron infusions delay augmentation even though alone it does not get rid of their RLS symptoms.  

      I truly believe that people who do not get any relief from iron are taking the wrong kind or at the wrong time.  I believe that iron is to RLS what insulin is to type I diabetics.  Taken in the right amount at the right time, insulin should do a good job of controlling blood sugar levels.  Not a cure but the best treatment we have so far for diabetes.  Pancreas transplant is a cure.  Brain transplant anyone?

       

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    • Posted

      They say: "FtMt gene expression is low in iron-storage organs such as the liver and spleen but can be detected in specific tissues such as the testis, kidney, heart, thymus, and brain." I guess that might also explain that RLS sufferers are more at risk from stroke, heart and kidney disease.

      I think it's thought that FtMt does help prevent elevated iron levels in Parkinson's and the damage it causes. Presumably, it just doesn't help enough.

      Yes, ropinirole is controlling my RLS well and has for a few years now. I still worry about the next step if my RLS augments though.

      I might have to ask my doc what he thinks about all this and iron infusions. I've always feared that overdosing on iron can damage the liver.

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    • Posted

      That's key to all things in life, not to over do, but especially heavy metals, which iron is.  Menstruating women probably have to worry less but men and older women have to be more mindful.  I look at it this way, my son's Flintstone's vitamins have 18mg of iron and I take 25 mg but I bet I'm absorbing more because the kind I take is so bio-available.  It's so broken down I don't know that my body can even stop it from entering when it feels it has enough iron.  Anyways, I think 45mg of iron (that actually gets absorbed) is the upper limit on a daily basis.  I think that ferrous sulfate pills are 65mg but studies have shown that a ridiculously low amount of it gets absorbed.  Even pharmacists will tell you that.  Anyways, if you're worried then you can take it under a doctor's supervision.  I go annually for bloodwork and my iron levels stay around 100.  I want it lower.  The lower the better.  Supposedly less iron = less chance of heart attack.  I know the RLS experts will tell you over 50 but I think they got it all wrong.  Including Johns Hopkins where they will infuse you to up over 200.  Plus they found that unlike the rest of the world, RLS patients' stores will drop.  They think that drop is why the RLS returns.  I think like you or the article that you provided at least, that it's because the BBB reservoir is depleted and our dopamine receptors (that gorged themselves on infused iron) are beginning to once again wither on the vine like flowers from lack of water.

      Essentially what I'm saying is that if I need iron to sleep, even on a long term basis, I'm not worried about the 25 mg capsules of it.  On the other hand, I'm a firm believer that with heavy metals, less is more smile.  Hello potassium...shouldn't take too much of that either. 

       

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    • Posted

      Yesterday, I took 4 x 18mg of iron as ferrous bisglycinate chelate at about 11:30 a.m. (so, on an essentially empty stomach) and the same again at about 6:30 p.m. (again on an essentially empty stomach) and ate over 400g of lamb's liver at lunchtime (around 1:30 p.m.). I did not take my first ropinirole until 6 p.m. (rather than 3:30 p.m.) and had virtually no trace of RLS at that time, nor all evening.

      Now, I may have been going through a rough patch with my RLS lately, and it may be that it's now swinging the other way, but it has been that 3:30 p.m. was the latest I wanted to leave taking my first ropinirole – if I'd left it until 6 p.m. I probably wouldn't have known what to with my legs, and indeed my upper torso, (and hence myself) until after 8 p.m.

      I don't know how long I will keep this iron intake up for, probably no longer than 10 days if it doesn't stop my RLS without the ropinirole.

      The thing is, I believe, that if our iron intake does become insufficient all the body's iron reserves become drained. I'm certainly no athlete, but I do take a considerable amount of exercise and that walking on hard city pavements. I gather demands on iron can be even greater with such exercise than that burning the same amount of calories with less impact. At the time I started getting RLS, I was taking considerably more exercise than I do now with ny iron supplementation only being that in a standard one-a-day vitamin/mineral pill, if that.

      Exercise is one of possibly two major differences between my lifestyle and that of my progenitors (who didn't have RLS). I understand overweight people leading a sedentary lifestyle are also quite likely to develop RLS, so unless they eat a junk food diet with little iron, I've still got my doubts about the (whole) situation.

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    • Posted

      Robert, how did you determine what amount to take?  Like I said, I take only one pill which is 25 mg.  Did your doctor tell you to take the amount?  Well, I'm VERY happy for you.  You are a brave soul indeed.

      I agree about exercise.  It probably does deplete iron.  I read an article that in RLS patients exercise raises hepcidin levels.  Lucky us.  But I think those levels drop off fairly quickly.  I have to go look for that article.  Yes, I read that obesity can be a "trigger."  Here comes my standard line: "The vast majority of the world can become obese and never so much as feel a twinge of RLS but those of us 'predisposed' to RLS can have it triggerd by over-eating."  Obesity is a drag on our already shoddy receptors.  I guess food is a DA of sorts.  That's why I've mentioned about intermittent fasting and/or consistently undereating.

      I've been taking something called Uridine Monophosphate lately (in the morning) and I feel like my RLS is worse.  This substance is supposed to up-regulate receptors.  I will give it a few more weeks.

      Maybe you and I can come up with a regimen of iron, potassium, and undereating that will help most of the RLS world.  Then we'll be awarded a nobel peace prize and all this ridiculous suffering won't be in vain.

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    • Posted

      I think 144 mg a day is near the lower end of the suggested amount for oral administration (before trying IV). If I ask my doc, he will probably just ask me if it's something I want to try. If I do get positive results from taking the iron, I'll probably check with him if it's something I should continue and if so within what limits and whether I shouldn't have blood tests.

      I found this 2001 report on experiments on rats and pigs stating:

      " ... [ferrous bisglycinate chelate] has been demonstrated to have a No Observable Adverse Effect Level (NOAEL) of at least 500 mg per kg rat body weight."

      "Toxicology and safety of Ferrochel and other iron amino acid chelates", Robert B. Jeppsen, Albion Laboratories Inc. Clearfield, Utah U.S.A.

      If you read that report you will understand that I would not be trying it with any other source of iron other than ferrous bisglycinate chelate.

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    • Posted

      You are simply the best!!!  I feel alot better now too about taking the bisglycinate.  Well if you're like me it will work every time without need for increasing dose, although I started from a point of no prescription drugs.  Thinking back on it, when I increased my dose of melatonin I had to double dose of iron.  That didn't last too long.  Shortly thereafter I found that melatonin was triggering attacks.  Will you keep us posted?  Xx
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    • Posted

      Yes, of course, I'll keep you posted. It wasn't an hour ago that I took my ropinirole and I've no RLS symptoms at the moment.

      [I still take 5mg melatonin time release each night. The only thing it does is give me a deeper sleep; I don't think it affects my RLS.]

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    • Posted

      I'm glad that stuff works for you.  I was on 1.5 mg and had restless body, when I went to 3mg I had to take two iron pills just to keep from jumping out of the second floor window.  We're all so different...and then not really...if you know what I mean smile.  The iron isn't just an RLS reliever but sometimes I take it when I can't fall asleep.  I consider iron to be a sleeping pill as well.  I have taken it and then found myself on the living room floor four hours later.  An hour after I take it I have to be in bed because I just drop.

      Why do you take the ropinirole if you have no symptoms?  Is it more like blood pressure medication where you have to keep it in your system or a pain killer like aspirin?

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    • Posted

      Well, yesterday I took the iron as I described the day before yesterday, but I left taking the ropinirole until just after 7 p.m. (rather than the 6 p.m. of the previous night described above). I had just begun to feel a few RLS-like twinges in my leg. And that's about the most I felt throughout evening. If I hadn't taken the ropinirole then though, I think my RLS would still have become strongly prevalent. Still 6 p.m. and 7 p.m. onset is a lot better than 3:30 p.m., but there again I may just be on a rebound swing.

      Iron is needed by so many processes, I'm fairly sure some of them have to do with sleep.

      I would not expect my iron levels to recover in just a day or two, if they are indeed low, even on the supplementation I'm taking, so I'm expecting to need to take ropinirole for a while yet even if the iron therapy works.

      The question in my mind at the moment is whether mitochondrial iron hogging, if that is indeed the problem, is a/the disease or just a facet of, a need for, our individual make-up and lifestyle.

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    • Posted

      Yes, the under, under lying cause of RLS is still very much a mystery.  Is it just genes or our gut microbiome or out of control hepcidin levels or iron hogging.  But we know how it presents - low brain iron resulting in very shoddy dopamine receptors but plenty of dopamine kicking around just waiting to be transported down our central nervous system by those pathetic receptors.

      Like I said on here before, probably for a good portion of our lives there's just enough iron going to our brains (even at night when everyone's serum iron level drops) and there's just enough dopamine coming out of those receptors such that we don't even know we have RLS.  Then something happens.  Like the aging process which includes the aging of those already pathetic receptors.  Or a spinal injury so that now that drip of dopamine which is traveling down our CNS, bouncing from spinal neuron to spinal neuron has to contend with a road block so to speak.  Or we become obese which allegedly is also a drag on our already pathetic receptors.  Or we start to take statins, anti-histamines, antacids, a near endless list of substances that interfere with the release of dopamine.  Magnesium allegedly intereferes with the release of dopamine!!!

      Well I had mild RLS last night but was able to fall asleep without taking iron or potassium.  I would like to get to 0 symptoms.

       

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    • Posted

      Of course, the report of increased dopamine levels was in 1985 (Montplaisir et al) and I do not find any later ones supporting it. Others suggest near normal dopamine levels. And "normal" levels might well be expected if dopamine receptors are fewer but dopamine production is lower.

      Another rat experiment showed "The loss of iron in the striatum due to dietary ID was significantly correlated with the decrease in D(2) receptor density ...".† Since the amount of dopamine in the synapse is closely controlled, the lack of availability of dopamine will, I understand (perhaps falsely), signal the creation of fewer receptors. However it goes on to say that it was more pronounced in males than females. Women are more likely to suffer with RLS than men in the human population, so there's some tying up to do there, I feel.

      In all, I seem to be seeing that the problem is indeed with iron, whether it's the amount available or the control of it I don't see fully answered yet.

      Indeed the levels of many nutrients fall with age. Iron, though, it is reported, tends to build up in the brain with age. Not in everyone? We can't access it? It's because we can't access it that it builds up?

      [It's now well gone 8:00 p.m., I've not taken any ropinirole today so far, and I've only very, very minimal, scarcely any, RLS symptoms. I went out walking today, some miles, so I in fact took five ferrous bisglycinate chelate capsules (18 mg elemental iron) both this morning and earlier this evening.]

      † "Iron deficiency decreases dopamine D1 and D2 receptors in rat brain", Erikson et al, 2001

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    • Posted

      OMG, unbelievable!  8pm and no drugs and little to no symptoms.  What about Melatonin?  Can't even type that word without shuddering.  For me it's the devil incarnate.  Are you still going to take it?

      Is it time for a revolution yet?  Should we take our anecdotal evidence on the road and let the RLS world know that this is something that MIGHT work for others as well?  You realize that you are one of the lucky ones.  Your symptoms were controlled with drugs.  There are some that are one step away, night after night, of going off the RLS cliff.

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    • Posted

      I still took melatonin last night. Don't know about stopping that – I barely got 5 hours sleep last night.

      Of course, it is known that those IV iron treatments relieve RLS symptoms in about 70% of cases. I wonder about the position of biglycinate oral treatment though. Biglycinate capsules don't seem to appear on the NHS drug price list (not under biglycinate, ferrous or iron), so I don't know about getting them on prescription on the NHS in the UK. I have seen high dose capsules for the medical treatment of anaemia exist though. If the medical profession agrees with the rat and pig results for the non-toxicity of the bisglycinate, maybe they should let on a little more.

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    • Posted

      Five hours really isn't enough, at least not for me.  This is what I would do (but you're not me and that's important to remember) I would save the iron for at night, for sleep.  By day I would gut it out and I would experiment with some form of bio-available potassium or even a tonic water that has quinine in it if you're desperate during the day.  So I would take some (not a ton) of iron before bed and then if I wake up too early I would take a little more iron.  Well that's me.   
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    • Posted

      RLS was not the problem with my sleep. 5 hours was all I got with the help of 7.5 mg of zopiclone. 5 hours is about the minimum I can cope with; on a very good night I might get 7 hours.

      Of course there's no way I'm going to sit through an evening with the severe RLS symptoms I have been getting, so just having that under control is about as far as I can think at the moment.

      [Moving towards ten o'clock, now, and I've some mild RLS symptoms. If they persist I'll have to take ropinirole – in any case I will take some before bed, because I want to be sure I'm not kicking about in bed for two hours or more!]

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    • Posted

      Ahh, I'm a bit of an insomniac myself.  Like I said, regardless of RLS, iron is the best sleeping pill I have found to date, and that includes the prescription ones.  It might not affect you that way, but it does me.  I hit the bed about 45 minutes after taking the iron otherwise I fall asleep where ever I happen to be.
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    • Posted

      Got down to 1 x 2 mg ropinirole a night with only mild symptoms in the evening. On Thursday though I took quite large doses of di-calium phosphate and magnesium citrate, and Thursday evening my RLS symptoms were thoroughly moderate. Now trying to minimize calcium intake since it both increases mitochondial activity and decreases iron absorption.

      However, I've now found this:

      "We believe that iron deficiency, at some point in the earlier life of the patient, sets into motion well-defined changes in cellular iron homeostasis, which leads to paradoxical redistribution in cellular iron, possibly as a way to protect the cells from complete starvation and cell death. Once iron is returned to the body, the process should reverse itself and cells should return to a “normal” iron balance. However, the initially altered mitochondrial iron homeostasis may not return to a normal balance and instead persist in a "new" homeostatic state at least in the brain, which, over time, leads to the development of RLS. This proposed dynamic readjustment of mitochondrial iron homeostasis, following a low-iron insult, is similar to the HIF-dependent, cellular protective mechanisms that occur with repeated hypoxia."

      "Altered Brain iron homeostasis and dopaminergic function in Restless Legs Syndrome (Willis–Ekbom Disease)", Earley et al, 2014

      [Go to the RLS-UK website, "More" menu > "For Professionals", then click "Resources" on the page you are taken to.]

      Very interesting paper – only wish I could understand it all!

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    • Posted

      Hi there. I've been hoping u continue to be well. Taking calcium or magnesium with RLS is tantamount to violating one of the Ten Commandments. Iron is a jealous substance. It will tolerate no others before or after it. Plus magnesium in my humble opinion is a dopamine ANTAGONIST. So not something u want to take at night either.

      Are u ready to take a leap of faith? To try the iron at night instead of a sleeping pill? The sleeping pill is always there.

      I did read a similar article about low iron levels during gestation being a cause of RLS. So we might always be pre- disposed to RLS. But as u and I know we can turn the tables on it. It can become the victim rather than the victimizer. You and I are toying with it and I for one love it. I have a sneaking suspicion that our gut Microbiome has an effect on iron in our bodies and twinking that may be yet another avenue in which to lay a blow to RLS. I have ordered some over priced probiotics off of Amazon. My real hope is that it will help my slow motility/IBS. But I am thinking that it might also give the RLS a kick in the A-- What amount of iron and when r u taking it these days.

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    • Posted

      I've been taking 90 mg of iron at about 11 a.m. and the same amount again at about 6 p.m. since last Tuesday. The last two evenings (before I took ropinirole and that took effect) I've had mild, touching on moderate, RLS symptoms.

      If damage has been done as the Earley paper suggests, then I guess it will take rebuilding cells with the DNA technology we do not have, are nowhere near having, to "cure" RLS.

      I don't know about IBS, but I have/had become very sensitive to gluten and even avenin – a couple of bread rolls and I was bloating. I switched to gluten-free bread, but I think I'm even getting sensitive to that now. I've found eating half a pineapple including the core very helpful.

      Believe me I will stop taking a sleeping pill as soon as ever it's possible, but it's now over a year since I've managed without one. I'm not sure my sleep problem is very much, or directly, related to my iron intake.

      On the other hand, I'm thinking that the muscle cramps I get may be partly related to iron. Significant amounts of iron are needed to build myelin (besides oleic acid and protein). Problems with muscle cramps and RLS are often concurrent in many people.

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    • Posted

      Bloating is a hallmark of IBS.  With me, it's like that air tight room that ships and subs have.  Once you close that hatch no air escapes.  That's my gut/large intestine...air tight.  I have a hunch that if I can improve that my RLS will improve as well, as well as the fatigue.  Do you get excessive fatigue?

       

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    • Posted

      No, I don't think so. The only time I get sleepy, so sleepy sometimes that I can't stop myself nodding off, is after my midday meal (when I no longer take iron, of cousre) sitting in front of my computer screen, especially if I've been taking a lot of exercise.
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    • Posted

      I'm not sure about fatigue – it's such a relative thing. Do you know the trigger for your IBS? Impaired gut function means impaired iron absorption, of course.
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    • Posted

      I think breathing and blinking are triggers.  Seriously, like RLS I think I have genetically slow motility which allows my zoo animals to get the best of me.  Or maybe it's the other way around.  I inherited my zoo animals from my mother (who had IBS) and they are pulling the strings and slowing down my gut transit time.  Supposedly methane, which is given off by certain of our gut bacteria slows down transit time.  Scientists used to think that methane was a relatively inert inocuous gas within side of us.  Now they think too much of it in the intestines is bad and can lead to disease.  I can't worry about some future disease, especially if it's out of my control.  All I can do is try to increase my motility either via pro-motility substances (natural of course) such as acetyl-l-carnitine or crowd out or kill the methane producing bacteria.  Or just go for a healthy gut...period. 
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    • Posted

      As I remember the advice about the quantity of fruit and veg to consume was that it was better to err slightly on the side of bloating.

      Methane is naturally produced, but I believe I read more recently the bacteria producing it should not be present in any quantity in the small intestine. If it is, the condition is known as small intestinal bacterial overgrowth (SIBO).

      Linseed, of which I consume a fair amount, is good for mobility I believe. I find a varied diet is also good for it – a lot of dairy and casein is not, casein protein powders decidedly not.

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    • Posted

      You use the word cure in terms of RLS, but if you don't give it a chance to rear it's ugly head then you've beat it anyways.  It's a formidable foe and life is filled with those.  I think you have it beaten back for now. 

      Are you finding that your muscle cramps are lessened with the iron or not really?

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    • Posted

      [See if this post is OK. Don't know what was wrong with yesterday's – no links, no brand names, no full stops without breaks before a capital.]

      Well, unfortunately my RLS was worse this evening than yesterday. I don't quite know if I've beaten it back or I'm just going through a light patch.

      I can control my muscle cramps by consuming large amounts of protein, and I think butter helps as well. I don't know why olive oil doesn't so much, maybe it's that I like butter and tend to consume larger amounts of it. Certainly toe cramps have been a lot milder the last few days – I daren't let leg cramps develop, they're simply too painful.

      I imagine, if what is in that paper is correct, if you can treat RLS with iron soon enough, there's more chance of the problem not becoming permanent. But are so many of us iron deficient or over supplied with calcium as the case may be?

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    • Posted

      I know that ferrous sulfate will poop out on people.  When your stores become high then your body will block the influx of iron from the GI tract.  Obviously it can't do that with iron infusions and I thought that it would be hard to do that with the bis-glycinate.  It's really only when the iron is circulating in your blood stream and in that brain reservoir that the dopamine receptors gobble it up and act more normally and release more dopamine to quiet our legs and arms.  So the iron you take by day is gone by late evening I would think.  Also, if you are taking a DA, then that is acting as a drag on your receptors.  Yah it squeezes more dopamine out of them but in the process it literally squeezes the bajeebers out of them.   The melatonin does not do that, quite the opposite, it antagonizes the release of dopamine.  If people with RLS can stand it, a week of quick release melatonin in the morning may actually up-regulate their receptors.  I'm tired enough during the day.  Plus it's not nice to fool mother nature.  She's in charge of melatonin and she doesn't want much in our bodies by day.
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    • Posted

      Well, if taking the iron regularly pushes the onset of RLS symptoms back to 10 p.m. or later, rather than the 6 p.m. to 8 p.m and occasional 10:30 p.m that it is now, and the mid-afternoon that it was, that will be an advancement. When that is the case I can perhaps think of taking the iron nearer bedtime. If the reservoir is working properly though, should it not hold enough iron to carry through from the day to the night?
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    • Posted

      If the reservoir/brain tissue was working properly then there wouldn't be RLS according to what we know from the research, right?  Is it possible that your daytime RLS is due to the ropinirole?  What would happen if you took 1mg of ropinirole?  Anyways, you promised to talk to your doctor if you liked the iron after 10 days.  I will hold you to that promise.  You must make an appointment with him (or her wink) and discuss all of this. 
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    • Posted

      If I don't take the ropinirole I can't sit and I can't sleep. But I haven't taken it in the day for all, or nearly all, the time I've been taking the high dose of iron, and there's been a number of days/nights I've only taken one (rather than two) in a 24 hour period. It's approaching 7:30 p.m. and I've still not taken any today.

      I'll probably need to see about my zopiclone prescriptions (but not quite so urgently about my ropinirole) after the Easter break, so I may put a note in my email or see how the receptionist thinks I should go on about my iron intake.

      If it it's about MtFt then it won't only be the brain that's affected, will it?

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    • Posted

      No, it might be localized to the brain.  The excess mitochondrial ferritin I think was only found in the substania nigra part of the brain?  We can't even begin to worry about it.  Something has to take us out, why not that. 

      Well we have to continue to move forward.  Like I said on here before, I think it is the world of the very small that is controlling us and our every disease.  A couple of years ago some canadian scientists found the unheard of - resident brain bacteria.  As far as they could tell they were not disease causing microbes nor could they make out any benefit to the brain from these critters.  I believe they were soil based organisms that somehow made their way into the autopsied brains at a very early age, maybe even in-utero.  The blood brain barrier keeps these guys out once it's fully intact.  Anyways, I've been reading about the connection between our gut bacteria and our brains for several years now.  They have been doing fecal transplants on autistic kids but the results aren't due out till the summer.  And just because someone doesn't have stomach aches doesn't mean that their gut bacteria aren't affecting their brain and their mood.  I've done my research (some, not much) and ordered some probiotics.  My RLS has become more frequent so hopefully this will be a good test.  For instance, if everything stays the same and after a month on the probiotics I realize that I am no longer getting RLS then like you with the iron, I will continue on with it.  Wish me luck.

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    • Posted

      Another thing, Graham's success with FODMOP might be due to the fact that he is altering the composition of his microbiome.  Or maybe he's withholding their favorite food and they aren't as rowdy.  Less rowdy = less RLS smile
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    • Posted

      The theory put forward by Earley is that an iron shortage damages the ability of mitochondria to maintain iron homoeostasis, and that it's possible this iron shortage occurs years before RLS develops. I remember that I went to school in the 1960's with rough elbows (which I now recognize to be a sign of vitamin B deficiency) and white flecks in my nails (a possible sign of mineral deficiency). White bread is and was fortified with both iron and calcium, but maybe like that they cancel each other out. I've always bean weary of taking too much iron, while my only worry with calcium was artery hardening, and then came along vitamin K2.

      I'm currently working on the idea that I have depleted my iron stores with a diet that wasn't as far up to the amount of exercise I take as I thought it was. That being the case, it's a matter of whether I can build them up again and everything is OK again, or whether there's permanent damage. And that is really where I suspect I'd to take the subject up with my doc.

      I think there's little doubt that gut health and bacterial balance are very important for our health.

      Doesn't Graham also take a whopping iron supplement? 300 mg? I've cut down on a few of the bad FODMOP foods, apples for instance, that fruit of which one a day is suppose to keep the doctor away!

      [9 p.m. and I'm still RLS free tonight – I wasn't last night. Yesterday I walked about 8 miles; today I stayed home.]

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    • Posted

      Yes, I had the test done for SIBO twice.  First time about 15 years ago when they were just testing for hydrogen and then the second time a few years ago when they were testing for both excess hydrogen and methane.  I was normal to low.  Very interesting, non-invasive test.  I think my over-zealous resident candida probably cannabalizes any microbe in my small intestine or at the very least depribes them of nutrients.  I feel that the bloating is strictly in the large intestine.  After I had a virtual colonoscopy a couple of years ago I was told I had a "long colon" but my gastroenterologist assured me that he's had patients who had ridiculously long and loopy large intestines and they had no idea and no symptoms of IBS.   Women supposedly have longer colons than men.  Dairy, which I enjoy, should be given up in its entirety I know.  One day hopefully.  You're right about the varied diet.  Even on any given day if I eat small portions of alot of different foods its seems that things move along.  I'm not in any real pain, it's not life threatening, I've had it since I was 12, and that is what propelled me into the world of medicine and science.  I received the probiotics today.  If they don't make an appreciable difference the next thing is linseed oil.  Thank you for that suggestion.  How did you do last night.  Any 7 hour nights lately?
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    • Posted

      Linseed/flaxseed itself (best soaked a few hours before consumption) has a good slippery, bulking action. There is a brand that has added extracts of other things to improve things further. (I'd better not go further into it or I'll get another post held up for moderation! – And not everyone agrees on the quality of it.) Gluten and dairy are two different triggers of IBS, of course. Pineapple (core) may help the former but is useless for the latter.

      Yesterday I stayed home again, but my RLS started up a little earlier than the day before – I took 2 mg ropinirole at about 9:30 p.m. Still, it was all the ropinirole I took in the 24 hour period, although I could feel very, very faint RLS symptoms the times I was awake. I shall go out walking again today – I fear I shall have stronger symptoms this evening and need both my ropinirole tablets. I've been getting a little more than 5 hours sleep, albeit broken sleep, don't know it's quite 7 hours.

      I still don't see any explanation of the latitude variation in the occurrence of RLS, nor am I clear how exercise affects it. Obviously exercise places a demand on iron stores, but why do symptoms improve the next day but not so much on subsequent days?

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    • Posted

      I think Graham has tried ferrous sulfate with mixed results.  You can't compare the 65mg tablets of ferrous sulfate to your 18mg (mine 25mg) ferrous bisglycinate.  It's the absorption rate I believe that you have to check and usually a nice pharmacist will do that for you.  So, now for the 6 million dollar question...how r u?
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    • Posted

      Ferrous sulphate!? My gut will have stopped working after a few days at 15-20 mg a day! No, I know, bisglycinates are a completely different kettle of fish, I've been reading about it: the fact that its the non-ionic nature means it does not bond to anything else in the gut, that it gets through the gut wall and right into cells where it is needed.

      At 90 mg twice a day of the Ferrochel for a fortnight now I do still get RLS symptoms up to a strongish level. However, for a few nights now, whether I've been out walking or not, but staying clear of calcium supplements, I haven't taken ropinirole until about 8:30/9:00 in the evening, and just that one ropinirole tablet has been all during the 24 hour period.

      When I emailed my health centre for a repeat zopiclone prescription yesterday I also put about my trying this attempt with mega iron supplementation. I have not received any email or phone call saying to stop immediately!

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    • Posted

      Ok so the iron gives you about 5 to 6 hours of relief from last dose during the day?  Have you tried taking it by night.  That's when our serum iron levels drop anyways smile
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    • Posted

      Well, it's been nearly 8 p.m. when I've taken the iron but it doesn't have any immediate effect on my RLS. This evening I've already got mild RLS symptoms at 7:45, I took the iron at around 7:15 p.m. and I took a ropinirole just a few minutes ago.

      The symptoms do seem to have got milder since I've been taken the large iron doses, but I may just be in a lighter phase of the condition and my psychological state may have been lifted with my positive approach to this attempt.

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    • Posted

      With the symptoms being light, the ropinirole will probably be coming into action soon too. Also the symptoms are coming and going somewhat according to how much I'm concentrating or being drawn into what I'm doing.
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    • Posted

      Well Robert, I see it this way (notice the "I") you can't keep up the large doses of iron.  I believe (maybe not so much with the bis-glycinate) that if your iron stores get too high the iron will not be as readily absorbed.  So with that in mind I would go back to the twice a day ropinirole which has been successful for you (don't mess with success) and use the iron as your emergency back up when you have a bad patch as you did recently.  Or I would ween off of the ropinirole which is only down-regulating your already pathetic receptors.  You may very well no longer have daytime symptoms once you stop the ropinirole.  Then you can take a regular amount of iron in the evening instead of mega-doses each day.
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    • Posted

      It was about 9:15 yesterday evening that the symptoms started to subside. I woke up at about 3 a.m. this morning with RLS symptoms and so it wasn't until 5 a.m. that I could get back to sleep after taking another ropinirole. (Neither paracetamol nor some carbohydrate helped sufficiently.)

      If one's iron stores are low, I believe, even at the dose I'm taking, it can take a few months for them to recover. Unless medically advised otherwise, or any blood test shows my ferritin level to be over 100 heading towards 150, I think trying for something like three months might be in order.

      If one's iron stores are high, it would seem to me probable that there is some disorder if extra iron is needed at a particular time of day.

      I'm still not ruling out that some sort of psychological state may be involved in both developing the condition and when during the day/evening symptoms occur. (I had another watch of the riddles scene from Turandot last night!) Of course, one can even forget one has a sore throat, when one gets engrossed in something.

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    • Posted

      OMG Robert I have to step away from the computer.  I've been doing hours and hours of research.  Mostly about lactoferrin.  Which is elevated in Parkinson's patients who have toxic levels of brain iron.  I know that we with RLS have high levels of transferrin but like dopamine we have funky transferrin receptors.  I found no information about it in terms of RLS. Lactoferrin, I believe, is involved in iron sequestration and binding.  I'm trying it!!!  One article said it is effective for RLS and another article talked about supplementing with it for high endurance female athletes to prevent anemia.  That's what I want to do, prevent or cure the anemia in our brains.  Cure is a bad word because like the bioavailable iron it would probably be a lifelong commitment.  The mind can overcome or ignore all diseases.  Like in the movie Young Frankenstein when Igor (who has a huge hump) is told by Dr. Frankenstein that he could take care of that hump and Igor looked around and said "what hump?"  What RLS???  I gotta get some sleep.  Speaking of sore throats I'm getting over the flu.  There was no way I could ignore that sore throat.  Kept me up for two nights.  I gotta get Turandot. Sounds spectacular.
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    • Posted

      I think Melatonin is great.  Maybe the fountain of youth.  Why do you think I took..many years ago now.  Just not for people pre-disposed to RLS.  I don't think Lactoferrin can be found in dairy just colostrum..mother's milk..actually the pre-milk stickey substance that the baby gets in the first few days of life.  I was not breast fed.  Don't know if that had anything to do with anything.  Well, I took a heme form of iron tonight called Ferritin by Cardiovascular Systems.  Works just the same.  My RLS was pretty bad tonight.  Right after a big meal celebrating the end of my flu.  No RLS really while I had a fever.  I don't take anything to bring down fever because I feel it just prolongs the agony. 
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    • Posted

      According to online information, cow's milk has 150 mg/L of lactoferrin and:

      "... cheese may constitute a natural dairy source of lactoferrin beneficial to health." Determination of bovine lactoferrin concentrations in cheese with specific monoclonal antibodies, Dupont et al, 2005

      Ferritin is the form in which the body stores iron, of course.

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    • Posted

      I can practically guarantee that your 3am awakening was due to your melatonin.  Really Robert, would one night without it kill you?
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    • Posted

      Seems whey protein has "vast quantities" of lactoferrin. I've only consumed whey protein twice since mega-dosing on iron and the time I had some without adding di-calcium phosphate to it was a good day for my RLS. I shall have to experiment with going back to making it part of my diet.
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    • Posted

      Interesting indeed.  I like the idea of lactoferrin from colostrum although why I do not know.  The other thing is it once again has to cross the BBB.  I remember reading a while back how casein (and gluten) are able to cross the BBB and how these proteins can thus negatively affect one's mood.  Why no studies done on levels of lactoferrin in RLS brain.  I did see a study on level of lactoferrin in parkinson's patients.
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    • Posted

      Done!  I ordered a product called lactoferrin gold.  I wanted it from grass-fed cows and no pasteurization or rather no "de-naturing" as holistic practioners call it.  I almost gave up and went with a whey product because I noticed a couple whey powders that had those requirements and like you said, plenty of lactoferrin therein.  We'll see.  If I like it then maybe I'll try whey at one point.  Or there's even colostrom powders but surprisingly they are low in lactoferrin???  Probably a quantity issue.  In 1/2 teaspoon of colostrum there is 15mg of lactoferrin.  While in a scoop of whey there is 200mg.  I guess if I did a scoop of colostrum there would be well over that amount.  Well it's my most expensive supplement to date.  My iron is cheap, cheap.  Probiotics decent price.  Magneisum reasonable too.  After tax and shipping it was $50 for one month supply. 
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    • Posted

      Yesterday, I came across this:

      "However, the paradigm of oral iron supplementation using three tablets over the course of a day, every day, may be in flux as further data regarding absorption become available. Intriguing findings ... suggest that more frequent iron administration could cause a paradoxical decrease in iron absorption. In this study, 54 women with depleted iron stores ... were given various doses of oral iron ...  Iron absorption was best when dosing was restricted to lower doses and less frequent administration (eg, 40 to 80 mg of iron no more than once a day). Higher or more frequent doses of iron raised circulating hepcidin levels and reduced subsequent fractional iron absorption. Additional studies ... are eagerly awaited."

      Anything you've come across reading about hepcidin?

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    • Posted

      Looking at the cortisol theory of RLS, I was reminded of your references to breast-feeding. I found:

      "Both the dopaminergic and corticosteroid responses to stress in our experiment were related to self-reported early life maternal care.

      ...

      Studies using maternal separation paradigms also suggest that alterations in the mother–infant relationship have an enduring influence on dopamine release in response to drugs or stress. For example, adult rats that were separated from their mother in early life have fewer dopamine reuptake transporters ... "

      Dopamine Release in Response to a Psychological Stress in Humans and Its Relationship to Early Life Maternal Care, Pruessner et al, 2004

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    • Posted

      I've read many articles over the years about hepcidin.  I've nicknamed it the "iron gatekeeper."  And I think they can now do blood tests for it but I doubt insurance will pay.  I just assume my hepcidin level is high.  And I assume it's high due to a raucous gut microbiome.  And I feel like even the iron supplement I take, as well absorbed into the bloodstream as it is, there is still plenty left over in my gut to feed those undeserving gut bacteria.  Less is more Robert.  None for you during the day.  Gut it out.  Take the iron at night, get relief, go to sleep.  If you can't go to sleep take a little more iron.   Still no relief take 1mg of ropinirole.  NO melatonin.  Once the ropinirole is gone from your daily regimen your dopamine receptors will return to baseline and you likely won't have daytime RLS to contend with.  I'll poke around for the hepcidin articles.
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    • Posted

      I took ropinirole at about 5 p.m. yesterday and again before I went to bed – I needed at least one day off from the symptoms. With a zopiclone, I got a full 7 hours sleep, or thereabouts.

      I may switch to just one dose of 90 mg (or less) of iron, maybe in the evening, based on the information I found as posted above. I don't know about stopping the melatonin, and I feel I ought to try getting some more magnesium back into my diet – I'll take it well away from the time I take iron.

      Do you have intention or essential tremor by any chance? I've started looking at a possible relation between these and RLS. If RLS is a psychological problem, methinks it must be more than a conscious problem to wake us from our sleep.

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    • Posted

      You think too much.  I do not have essential tremor...yet.  I'm sure it's waitng around the corner for me.  I'm ready to take it on.  Do you have this condition?  I have found the cause and then the solution to my dry eyes so I'm down one health problem.  And the RLS is no problem at all, provided there are no shortages of iron in the U.S.  So I'm due for something new. 

      I have a friend who is a depth psychologist and believes that all dis-ease is a manifestation of something in us that wants to get lived or recognized or acknowledged.  I'm not sure.  Plus there's no roadmap so how do we traverse that terrain? I do believe that we are all souls inhabiting an earthly vessel and that we planned our little trip here long before we were born.  So each and every condition, conflict, connection, blissful moment, beautiful son, I asked for.  Many times I lose sight of this fact and then my vision becomes clear again.  Do you really want to ponder whether RLS could be a psychological problem?  I think it's equally as likely that the cause of our RLS was that you and I planned to have it so that we could solve it together this time around in the physical world.  Maybe last time around we couldn't?  RLS is not my cross to bear in this lifetime.  It is my gentle reminder to share with others what I have learned on my healing path.

      In terms of your essential tremor, do you know that we are in the age of aquarius.  Supposedly, the energy/vibration that exists in this plane is ramped up.  Has been since 2012.  Maybe your body needs time to adjust your maybe your soul needs to enjoy this vibrational gift.

       

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    • Posted

      I just realized that no one has chimed in on our conversaton in a long while.  What's up with that?  I see we have 4 followers.  Has everyone's RLS gone quiet?
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    • Posted

      I've a strong feeling that thinking about RLS symptoms tends to bring them on, so I would say that as much as I think, my thoughts should be away from RLS unless it's solid medical, psychological or philosophical thought.

      Since I was about 20, my nerves seem set against letting me hold and carry a saucer and teacup, while when a youngster I used to help clear a hotel dining room carrying plates balanced up my arms. Threading a needle currently seems to be limited mostly by my eyesight – I need to have my best reading specs on. Trying to get some rest in a reclining position and RLS seem very much like an intention tremor to me.

      Certainly, saying we feel because certain cells fire doesn't cut it for me. What the nature of the "soul" that produces these feelings is, whether it's all-pervading (as statistically significant findings for synchronicity would suggest) or local, whether there's a limited number of souls as Plato suggested and we're all becoming more soulless as the world population increases, I wouldn't like to speculate.

      What effect circumstances in early life, trauma, PTSD have on us, on epigenetics that affect us, is something I'd like to know more about, particularly where it's relevant to RLS, of course. I believe RLS is raised among PTSD sufferers.

      I see the four are you, myself, the moderator and Mali-uk (who made just one post). Have we bored everyone or "out-scienced" them?

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    • Posted

      Does PTSD haunt you?  We all go through that dark night of the soul.The physical dark night of the soul is a rite of passage so that we always honor this earthly body as best as we can.  Spiritual dark nights of the soul put us on that warrior path.  So maybe someone betrayed you or you lost someone you loved at a very young age and it takes an enormous amount of courage to accept that we cannot figure everything out but that there is a sacred plan and it all part  of our sacred journey.  I don't think we can count souls like we can dishes in the cupboard.  And if we have too many guests then not everyone gets a plate?  Hmmm, I don't know.  I enjoy reading about near death experiences and stories of people under hypnosis who recall their disincarnate lives.  I read that sometimes a couple will lose a child at birth and the soul of that child came to earth for a brief but specific purpose...such as to teach maturity to the parents.  Step back away from your trauma, could their have some meaning or purpose no matter how painful and horrendous?

      Anyways, I don't think there's much cross-over between physcial dark nights of the soul and spiritual ones.  So I think your RLS and tremors are of course physical ones that you will eventually make peace with.  Your PTSD is a spiritual calling.  It might even be your spirit guide in disguise? 

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    • Posted

      Postraumatic Dental-Care Anxiety (PTDA) is most likely in my case having experienced pain levels where one is forced to believe that all we really basically know in this world is pain or the lack of it, ultimately joy. It has been described as sub-threshold PTSD for medical criteria – if they knew what they were talking about, I very much doubt sub-threshold would be the word for it!

      Of course, the pain resulted from a direct physical assault on the nervous system itself so I have also not tended to rule out some sort chronic damage which tends to show up more as one ages.

      Against this though is the fact that I had a sort of nervous problem affecting me as ayoung child, before any painful dentistry. I would lie in bed, wake up perhaps, and be horrendously irritated by some almost uncontrollable thought that somehow something like the point of a cocktail stick was being scraped around the inside of my toenails. Maybe a visit by mum to my bedroom fixed it then. However, I've now had this problem more recently. I'd managed to go without zopiclone for a few weeks and then suddenly this sort of psychological or neurological condition cropped up. I needed to take medication to stop it – getting up and walking about it did nothing to stop these thoughts as soon as I lie back in bed.

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    • Posted

      I had a dentist as a child that didn't believe in Novacaine.  It fractured my personality.  The fear I had as we would drive to the dentist was nothing short of overwhelming.  Ultimately I do not believe it changed my self proclaimed plan for this life.  It did make me quite aware of my son's experience at the dentist and all doctors.  I've had root canals and a fractured tooth pulled and it didn't even cause a second of worry or fear.  Gotta love that Novacaine.  And I had intrusive thoughts as you did and felt that it ruined my childhood.  I never wanted to touch people's food because I felt it would become poisoned.  Once gain my depth psycholgoist friend put a different spin on it.  I would have gotten there myself.  These childhood "traumas" are a must. It's a scar for sure but it is well healed over and should be worn as a badge of honor.  I went on to wait tables from about 17 to 25 years of age and touched the whole world's food.  And then again after pregnancy I had intrusive thoughts until I didn't.  I am left with one obstacle that I will submit to and make peace with when my son goes off to college next year. 

      These twists and turuns that we curse and ask why us and look upon the rest of the world as so lucky can really become a magic carpet ride.  Nothing is taken for granted, we truly enjoy those fleeting moments of joy, I waste no time on small talk and look forward to the unfoldment.  I feel sorry for the people who go through life believing that there is no scheme or rhyme or reason.  

      You my friend are being dragged, kicking and screaming, to the workings of the universe.  Some spirit guide wants you to see your connection to that universe, all life forms therein and the Creator/Source/Great Mystery.  If you think that what happened in childhood was something other than the first few steps on your sacred journey of growth and understanding then think again and again.  Is it possible that you're still operating out of an unconscious state?  Unconscious of your unique sacred path that is leading you to an awakening, a transformation.  You have to consciously embrace what is happening to you and not pathologize it.  It's not a disease it's an opportunity.

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    • Posted

      I think what we need is to know whether we need more iron in our blood and brains and other organs or whether we just need more iron in the soul or both. (Iron in the Soul, Jean-Paul Sartre, 1949/50)

      In the meantime we are just subject to; "My name's dopamine, what's yours?"

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    • Posted

      Well I know that they are finding other parts of the RLS brain (besides Substania Nigra and Putamen) that are low on iron.  But dopamine receptors are heavily concentrated in those two areas.  Other organs, good question.  I've been experimenting with different substances taken at night (ie magneisum citrate, taurine, acetyly l carnitine) and it's not working out.  RLS seems worse when I do this.  Including eating.  Magneisum threonate (supposed to cross blood brain barrier) and lactoferrin are on their way to me.  I will give these a try, otherwise I'm only going to take supplements in the morning.

      How has your sleeping been? 

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    • Posted

      With a zopiclone my sleep has been very good these past few nights, possibly approaching 7 hours with just one break. However, I've been back up to two ropiniroles. Just last night I started taking the iron just before bed – I take magnesium citrate with whey protein when the latter forms part of my midday meal (often my only meal apart from a few hundred millilitres of condensed milk in my 4+ mugs of coffee first thing).

      Yes, the heart besides the brain. I've not woken up shuddering since I've started taken the large dose of iron. I'm wondering ... maybe it's just Spring.

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    • Posted

      For my RLS. It's not been as severe as it was during the winter, but the last few days it has started to niggle at about 5 to 6 p.m. if not right through the afternoon once or twice. I don't like risking being woken by it during the night and then needing to lie twitching and maybe kicking about for a couple of hours while the zopiclone I've taken loses its effectiveness.
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    • Posted

      Ok, so what are your goals?  Do you work or are you  retired?  If retired then a little RLS by day is ok, right?  You can experiment with different substances.  I read about an Amish formula called Stops Leg Cramps and Muscle Spasms in 60 seconds.  Hey, what the heck.  Or try a bioavailable form of potassium by day.  Then at night bring on the iron.  If it doesn't completely get rid of your RLS then you can always take the ropinirole.  The ropininirole is there for you, always there for you.  Hold a tablet in your hand if you have to as you're lying in bed but see if you can live without it.  I'm going to assume that you've had the "all day niggles" lately because you're going through withdrawal from the ropinirole.  It's up to you.  I like au natural.  I hate being dependent on a doctor for a drug I desperately need.  I have one prescription drug - klonopin, and I am looking forward to leaving it behind one day.  Then I will not be beholding to any doctor.  Don't get me wrong, all medicine is sacred, even ropinirole and klonopin.  But I find my use of it demoralizing and completely unnecessary.  All in good time.  Speaking of time, my lactoferrin came today and I took one capsule.  My plan is to just take one every night for a month and see if I get any attacks.  Then stop after a month.  Far from scientific, but it is what it is.  Plus it's supposed to be good for immune system and even digestion.  We'll see.  I've been taking a specialized probiotic every morning for about two weeks for motility and see no improvement yet.  I expect the same to be true for the lactoferrin.  I'm sure I get plenty of lactoferrin from the dairy I eat so I don't know what I expect from this supplement.
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    • Posted

      Only one ropinirole again last night. Didn't take it, didn't need to take it, until 10 p.m., went to bed at about 1:40 a.m. and didn't get up until about 8:40 a.m. The day before yesterday I went out for a longish walk, about 6 miles. There definitely seems to be something in exercise helping, but not the same day you take it, rather the next day and maybe the day after that.

      I've had a touch of toe and foot cramp, even the faintest threat of a leg cramp in bed, but nothing serious for the past week or so.

      My serum potassium level is already probably very high from using potassium chloride salt and eating a lot of bananas, so I don't know about adding further sources of that.

      The only prescription drug I take besides ropinirole is zopiclone. (Melatonin is also prescription only in the UK, but skip that.) Doubtless there are people on these forums who would attribute any shudder, shiver, tremor, shake, tremble, bad mood, lack of clearness of mind, failure of memory, wobble, loss of balance, error judgement, listlessness, daytime fatigue, lack of energy, feeling of weakness, brain fog, lack of sleepiness in the evening, not attributable to RLS or ropinirole, to it!

      Now that I'm taking the iron just before bed I can scarcely take it on a more empty stomach – not entirely sure what the best time is to try to slip it in unnoticed by hepcidin though! Might just before exercise be a better time? Maybe it's just a case now of seeing where I am in a few months.

      I reach state pension age (for males) this autumn. Currently I get pension credits. I'm usually clear of RLS from about 5 a.m. until midday, unless I've had a bad night – lack of sleep and RLS don't go together well. If I want to experiment, then leaving taking ropinirole until the RLS just starts (I'm expert at realizing that point by now, of course) or until 10 p.m., whichever is the earlier, is a fairly tolerable way of going on.

      Certainly I don't like needing to take medication nor being dependent on the medical profession – Plato, for one, would never approve!

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    • Posted

      As you might remember I'm experimenting with Lactoferrin.  It' only been three days but my assessment thus far is that it is NOT an emergency RLS med the way iron is.  It does not stop my RLS once it starts the way the iron does.  But the first day it came I took it in the afternoon and felt I got a better result...meaning no RLS that night.  If I'm reading the articles correctly, lactoferrin helps cells to acquire and bind iron.  So to me that says you want to take it as directed, before two daytime meals.  It makes sense because then the lactoferrin has the chance to bind with the iron that is picked up by via the bloodstream.  PD patients have too much lactoferrin (and too much iron) in their brains and we might have just the opposite, certaintly in terms of the iron and possibly the lactoferrin.  Do you see where I'm going with this?  I want to try to figure out what our brains are lacking that prevents it from saving some iron for a rainy day the way the rest of the world.  Our brains can pick it up from our bloodsteams but then like most Americans it saves none of it and lives blood supply to blood supply.  Anyways, I noticed that some guy applied for a patent for lactoferrin in 2014 for the treatment of RLS.  I want us to beat him to the punch smile
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    • Posted

      Have you tried taking a higher level of iron supplementation without first getting RLS symptoms? I don't quite know why a conclusion of your situation might not be that your iron is sort of generally on the just adequate level.

      I'm working on the notion that supplementing at 90 mg will provide about 9 to 36 mg a day of absorbed iron. Minus the 1.5 mg our bodies need each day that should be about 7.5 to 34.5 mg a day to raise my iron stores. Thus in 100 days I might be able to raise my iron stores by about 0.75 to 3.45 grams. The male body contains about 4 grams of iron (the female about 3.5 grams). One would therefore expect to get some result after 3 months or so.

      Our bodies store iron as ferritin. Ferritin molecules contain numerous iron ions and the body stores a lot of iron this way, most of the iron it stores, and stores, or should store, it effectively this way. (About a gram this way, I believe.)

      What seems may be the case in RLS sufferers is that they have elevated mitochondrial iron, depleted cytosolic iron and reduced amounts of iron regulatory protein 1 (this latter possibly resulting from low cytosolic iron). What we don't quite know is why.

      Iron is moved in the blood in the form of transferrin and attaches to cell receptors to give up the iron it carries to the cells. The transferrin flux is quite high, as you seem to be saying.

      Lactoferrin is very similar to transferrin, just a slightly different structure:

      "Lactoferrin shares many structural and functional features with serum transferrin, including an ability to bind iron very tightly, but ... Nevertheless, lactoferrin has some unique properties that differentiate it: an ability to retain iron to much lower pH, a positively charged surface, and other surface features that give it additional functions.

      Lactoferrin and transferrin: Functional variations on a common structural framework, Baker, Baker and Kidd, 2002

      The increased lactoferrin in PD patients is postulated to be part of the bodies defence mechanism, I see.

      I'm mostly concerned with why our MtFt is high, whether high-dose supplementation can satiate it so that cytosolic iron can increase and if so whether it's a healthy situation or at least whether it's healthier than ropinirole with less augmentation.

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    • Posted

      Wow, lots of good stuff you found out.  So lactoferrin is the bodies defense mechanism is PD.  I know unbound iron in the bloodstream is considered the most dangerous (obviously by our bodies as well) so the lactoferrin is dispensed in the PD brain to bind up that iron?

      My male doctors are jealous of my red blood count - slightly over 15.  Normal for female around 12-13.  And iron stores over 100, slightly again.  So no, I will never over-supplement with iron.  Have I shared with you what I think is Johns Hopkins big mistake with iron infusions?  Like you, they think getting a person's iron stores way up - at least 200.  300 better still.  They think that there is something about those really high iron stores that give our brains a chance at some.  I think that what happens is that while that iron is cirulating in the blood stream, and still unbound, our brains suck it up like no tomorrow.  You know what happens when a person gorges themselves?  Their stomachs become big and distended.  Well same thing happens to our dopamine receptors.  For once in our lives they grow big and distended smile.  Hey we may even sprout some new ones!!!  Maybe our brains even put a little iron away for a rainy day?  Then if we get relief from the infused iron and throw away the DAs, all the better, because those are just a drag on our shiny new receptors.  Nothing good lasts forever, especially not our dopamine receptors.  Eventually, like flowers without much water, they wither on the vine or in other words, return to baseline which is pretty crappy.  So back for another infusion we go.  To prove my point even more, Johns Hopkins has gotten away from iron sucrose.  Why you ask?  Well even though they successfully raised patients iron levels with the iron sucrose it just didn't seem to do much for their RLS.  Guess what, double molecule sugars won't cross the BBB.  Now I believe they use a single sugar molecule.  Iron glucose???  Can't remember.

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    • Posted

      "... [it was] found that the iron binding capability of lactoferrin intervened in DA cell rescue only when neurodegeneration was consecutive to iron-catalyzed oxidative stress. Overall, our data suggest that the accumulation of lactoferrin in PD brains might be evidence of an attempt by the brain to minimize the consequences of neurodegeneration."

      The Iron-Binding Protein Lactoferrin Protects Vulnerable Dopamine Neurons from Degeneration by Preserving Mitochondrial Calcium Homeostasis, Rousseau, Michel and Hirsch, 2013

      Ferric iron is very dangerous to the body, ferrous is not. The trouble is the body needs to use iron in its ferric form, so it has to store and transport iron in its ferrous state and provide it for use in its ferric state. A process which must have involved a good deal of eveolution, methinks.

      I think 100 going on 150 is widely thought to be the healthy ferritin level.

      I say again, we need to know why our mitochondria are requiring so much iron:

      "... increased mitochondrial ferritin suggest increased iron requirement for mitochondria function in RLS, which will take up more of the cytosolic iron. If the conditions provide access to adequate iron stores, then the cytosolic iron balance can be maintained, but this requires increased iron input to the cells. ... this process will compromise mitochondrial iron-sulfur complexes that have a critical role for producing iron regulatory protein 1." Sleep and Movement Disorders, Chokroverty, Allen and Walters, 2013

      That hypoxia may also be significantly involved is also suggested.

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    • Posted

      Questions currently of unknown answer, I feel.

      " ... if iron chelator therapies are to be successful, they must not disrupt normal cellular iron homeostasis. In this regard, ‘too much of a good thing’ may be hazardous; ... a better understanding of the basic molecular mechanisms of cellular and subcellular iron homeostasis in the brain is critical to the future success of therapies that target iron dysregulation in neurodegenerative diseases."

      Mitochondrial Iron Metabolism and Its Role in Neurodegeneration, Horowitz and Greenamyre, 2010

      I don't think it's fully understood why iron sucrose doesn't work so well. If iron can be got into ferritin structures, surely there has to be a malfunction somewhere for it not to reach places it's needed in the brain, whether it's crossing the BBB or elsewhere?

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    • Posted

      I believe that our GI tract will breakdown food to tiny absorbable particles to the best of its ability. By the time iron from food enters our bloodstream it can and does cross the BBB. Iron infusions don't have the benefit of digestion so they should deliver as broken down a form as possible. In terms of oral ferrous sulfate I believe that if you're young or old with great digestion then taking ferrous sulfate at night may help some as well as bis- glycinate. My question is whether the RLS brain or any brain can get some iron once it's in body ferritin form. I think that the non RLS world has the ability for their brain to stockpile some iron whereas we do not.
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    • Posted

      I think essentially iron is stored as ferritin before transferrin takes it to the BBB – that's the usual process. I may be wrong, but I don't think supplementation will supply the brain or even the BBB directly, or not to any great extent. The thing about biglycinate is that it's twice wrapped in glycine so that it goes intact through the GI tract wall. I can't see that iron sulphate will do other than separate into an Fe ion and an SO₄ ion in the water in the GI tract (as it always does in water because of water's dipole moment) leaving the Fe ion to attach itself to something advantageous (in that it is absorbed) or disadvantageous (in that it is not absorbed).

      The thing about the RLS brain, according to the research, is that the mitochondria are storing it to the disadvantage of the cell fluid, the cytosol.

      It looks to me as if the main advantage of lactoferrin is that it may help to prevent damage to cells as we attempt to raise our iron stores with supplementation. But that's definitely pure postulation on my part.

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    • Posted

      'Deferprone, a chelator used for treating iron overload, has been shown to possess this iron "relocating" ability by scavenging labile iron from mitochondria and transferring it to cytoplasmic and axtracellular apotransferrin.'

      The Importanace of Iron in Pathophysiologic Conditions, Gozzelino and Arosio, 2015

      However, deferiprone carries a significant risk of agranulocytosis, ...

      Mitochondrial Case Studies: Underlying Mechanism and Diagnosis, Saneto, Parikh and Cohen, 2015

      Interesting?

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    • Posted

      Ok as usual I'm confused. Is the iron hogging mitochondria located in the brain such that a redistribution might be something worth exploring? Or is the iron hogging not going on in the brain? You know I need to do some research...hold that thought.
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    • Posted

      Got it. So mitochondria ferritin is a neuroprotective response. It's elevated in the substania nigra of RLS and PD patients and another brain region of Alzheimer's. Not sure how that ties in to RLS. Transferrin is elevated in choroid plexus and decreased in microvasculature of brains of RLS. You would expect to see an increase in transferrin when there is low iron levels yet at the BBB it is decreased. That leads RLS experts to reason that it is this iron regulatory protein/ system that is funky. Our ferropotin is same as controls and that is what assists iron to exit into brain from BBB.

      You know for the most part RLSers are good by day when serum iron is more available. We just can't seem to save any for a rainy day. For now I'm good with sneaking our brains some iron at night.

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    • Posted

      Oral iron therapy will not work immediately and is dependent on raising stores. Because iron crosses the blood brain barrier poorly this may take a few months ..."

      Hyperkinetic Movement Disorders: Differential Diagnosis and Treatment, Albanese and Jankovic,2012 

      and sorry to say:

      "... but lactoferrin concentrations in serum are barely detectable and this protein is generally found within cells (neutrophils) and is thus unlikely to contribute to iron transport to the brain or other organs."

      Use of ferritin to treat iron deficiency disorders, US 8071542 B2 (Patent)

      So you think that something other than mitachondria (mis)function is causing the IRP insuffciency and the mitochondria are going into defence mode? (Which further lowers IRP availability? A vicious circle?)

      I've found that: "Iron depletion is common in obesity, but is not thought to be linked to iron intake. Instead, research suggests that iron depletion may be linked to inflammatory processes related to fat accumulation." (Source: Nature) So maybe an explanation of why there's a higher rate of RLS in the adipose population. Still nothing on the latitude distribution though.

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    • Posted

      Yes a lot of things can make RLS worse than it has to be. Substances of addiction including food will down regulate our already bad receptors. The vast majority of the world can be obese and never so much as feel a twinge but if you are pre-disposed to RLS and are addicted to food it's a bad situation. On these drug websites called Longecity and Bluelight they are always trying to find ways to up- regulate their receptors for a better high. When I was doing research last night I read that researchers believe that low levels of serum iron may lead to PD or their is some type of correlation.

      So how r u doing these days? Still only 1 ropinirole? How many hours of sleep?

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    • Posted

      Tomorrow I should be going for a blood test (ferritin, etc, etc). So, maybe next week I should have more of an idea of where I am regarding my iron level.

      I've been getting just about enough sleep taking zopiclone. Actually I only woke up less than half an hour ago after sleeping about an hour on my sofa – not the slightest sense of a shudder, but I had already taken a ropinirole. I've mostly gone back to two ropiniroles a night, although the night before last I just about managed on one – I woke up at about 4 a.m. with symptoms, but after a bit of a walk about got back to sleep for another 2 hours at 5 a.m. The not waking up shuddering as if my whole system was about to fail I find very encouraging. Other symptoms continue at disturbing levels, but maybe rather milder than before.

      If my ferritin is found to be only low to middling, I suppose I'll think the high iron dose is doing good.

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    • Posted

      Science NewsIncreased Blood Iron Levels Linked to Reduced Parkinson’s Disease Risk

      Aug 15 2013

      Increased iron levels in the blood are associated with a decreased risk of developing Parkinson’s disease (PD), according to a new study which appears in the June 2013 issue of PLoS One.

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    • Posted

      "Iron deficiency is a common worldwide problem leading to several morbidities including anemia. Although oral iron is the first choice in iron deficiency therapy, it may produce gastrointestinal (GI) and liver disorders.

      ...

      Ferrous sulfate exhibited important acute toxicity as well as early and late GI tract and liver toxicity. ... iron amino chelate presented differences regarding early and late GI tract and liver toxicity versus iron polymaltose complex."

      Comparative Study of Gastrointestinal Tract and Liver Toxicity of Ferrous Sulfate, Iron Amino Chelate and Iron Polymaltose Complex in Normal Rats, Toblli et al, 2008

      Bisglycinate is sort of a double amino chelate, as I see it.

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    • Posted

      Got my blood test results. For whatever the interest:

      My serum ferritin level was 180 μg/L. My red blood cell count was 4.51 10¹²/L (extreme low end of acceptable range: 4.5 to 6.5 10¹²/L) and my haemoglobin was 141 g/L (lowish end of acceptable range: 130 to 180 g/L). It looks as if the red blood cells made up a little for their sparsity by their size, though not medically macrocytic: mean corpuscular volume 99.3 fL (acceptable range 84 to 105 fL).

      Had to go back today for another sample to be taken: the sample was too old when they got got it for potassium analysis and my serum ALT level is a touch high (result of conjugated linoleic acid supplementation?) as is my serum urea. My GFR might be higher too, only 84 when over 90 is preferable for my age range. Also hoping to get some transferrin values this time.

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    • Posted

      Interesting!  I wish we could have known values before supplementation with iron, but you have't been taking that long.  I wonder if they would be willing to test your hepcidin levels?
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    • Posted

      Can that only be measured by LC-MS? Some equipment! I see it would cost about £70 to get a couple of ordinary blood test values privately, outside the NHS. Even bisglycinate might be cheap compared to measuring hepcidin!
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    • Posted

      You're right.  Only worth it if it's free.  I assume my hepcidin levels are elevated and I believe underlies that is my gut microbiome.  It's a work in progress.
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