I have an ex-colleague who used to teach physiology using guided imagery. I attended one of her lectures once on the oxygenation of blood. All the students had to close their eyes and sit, (or lie down) comfortably.
Then she began.
I had to imagine I was a haemoglobin molecule sitting in a boat (red blood cell) and was guided through various adventures which depicted the oxygenation and deoxygenaton of blood.
I'm one of those strange people who enjoy guided imagery and get really caught up in it. My best experience of it was at a conference about health and spirituality in Durham Cathedral.
I usually have to be dragged out of the experience to cold reality. Sometimes to the sound of snoring. Never my own.
To get back to the point, I tnought I'd write a guided imagery script for how iron can help with RLS. However as I went along it turned into a story. I'd like to share the story.
I also have an ulterior motive. I don't know the ending so I'm going to be asking you.
Ready?
Once upon a time Fred the ferrous molecule was resting in his universe. A huge place populated by millions of ferrous molecules in a place called "Capsules : take one each day",
Like all ferrous molecules, Fred was with his close partner and friend, Betty bisglycinate. So attached were they, that they never let go of each other.
Fred was at peace, but was sometimes disturbed by thoughts about what his purpose was.
Then one day, apocolypse. Freds whole world was taken and put in a hot, wet dark place followed by a deluge of an orange liquid. Fred's world was washed down a long tunnel and came to rest in a lake of acid.
His world was torn apart and he found Betty being torn away from him.
He was horrified, he felt he had no control over what was happening to him. He was afraid, because he coudn't predict what was going to happen next.
Fred and all the other ferrous molecules were swept into another tunnel whose walls were ridged and bent into many folds. On all the folds were what looked like stalactites. Fred managed to cling onto one of these alongside some of his friends.
He noticed that many ferrous molecules didn't make it and were swept away.
He then felt himself grabbed by another molecule wearing a tee shirt labelled "ferroportin". Just before he was dragged into the stalactite he saw similar molecules attempting the same, but they were attacked by yet other molecules with "hepcidin" tee shirts and many of his ferrous friends were left behind.
One of the few ferrous molecules left, Fred now found himself in a narrow tunnel filled with a clear fluid. There was a strong current and there were lots of different molecules and cells carried along in it. There were a lot of cells shaped like doughnuts (donuts).
Then along came a bus! "Hello" said the bus, "I'm Thomas, the transferrin molecule.. "Get in I'll take where you need to go",
Fred got on. He was relieved that he was being looked after and somebody, at last, seemed to know what he was supposed to do.
He noticed the bus was less than 40% full, but all his ferrous friends had been picked up by either Thomas or the other buses he could see.
Some time passed as Thomas was swept through a labyrinth of tunnels and a large cavern that echoed with loud rhythmic sounds. Some buses went one way and others another.
Thomas came to a transparent wall and Thomas said, "Time to get out, nearly there".
Fred got out. On the wall was a sign, "Blood Brain Barrier. Limited entry". Before Fred could think he was grabbed and taken through the wall, but many of his friends were again left behind.
He now found himself in another liquid which contained other molecules, but no cells.
He was approached. "Hello, I'm Fuyoku ferritin and I'm going to be looking after you until you're needed".
Fred was happy again that he was being looked after and was needed, nearing his final goal.
THE END
Well it isn't really, I don't know what happens next.
I know that according to some theories lack of iron is the main cause of RLS.
(Purely as this story is about Fred, I won't be mentioning other theories, although I'm fond of the marmite one).
I also know that according to some theories dopamine deficiency and/or downreglation of dopamine receptors, glutmate excess and/or an underlying adenosine dysfunction lead to RLS symptoms.
I haven't a clue what the connection between the two is.
Your homework for tonight is, should you choose to accept it, look up what's the connection between iron, dopamine, glutamate and adenosine. You can use Google Scholar, it's allowed.
Tell me what you find out and the best answer gets a chocolate muffin,
Thanks Manerva, I loved the story and the imagery. What a great way to educate and learn not to mention enlist the help of fellow researchers. I do not have an ending to the story but will start looking. 😀
The answer to life, the universe and everything is ….(drum roll)…. 42, adjusted for inflation. The connection between our lousy D2 receptors (the RLS does not have dopamine deficiency-we have more than the average bear) and adenosine dysfunction was, is and always will be BID also known as brain iron deficiency. europepmc.org/article/MED/2.... You can read the article if you like, but here’s the cliff notes. Highlights • Brain iron deficiency (BID) in rodents is a valid pathophysiological model of RLS
• BID was previously shown to cause upregulation of adenosine A2A receptors (A2AR)
• We demonstrate that BID also causes downregulation of adenosine A1 receptors (A1R)
• A1R downregulation can constitute a key pathophysiological factor in RLS.
I suggest taking two capsules of ferrous bisglycinate before bed then calling me in the morning. I’ll supply the muffins.
Once upon a time there was a very clever man called Isaac Newton. He was so clever that one day when an apple fell on his head, he invented gravity. It existed until someone else invented something better.
He also liked playing with prisms and discovered light contains 7 colours, as seen in a rainbow. He claimed that light was made up a stream of tiny particles he called corpuscles.
All well and good. Corpuscles : one point.
However, years later some other men shined a light onto a screen in front of which they placed a barrier in which there were two slits very close to each other. Very close.
Why would you do that? I suspect they liked throwing stones into water when they were young! Not digging holes like me.
In any event, if Sir Isaac was right you'd expect the corpuscles of light to go straight through the slits, some through one slit and some through the other thus forming two narrow images of the slits close to each other. Just like you'd expect good corpuscles to do.
Shock,surprise! That s not what happened! Isaac was wrong! He was wrong about gravity too. But that's another story.
What happened is the light spread out from the two slits in a circular pattern, it didn't just go straight ahead. Wow!
Weirder still the light hit the screen in light and dark bands, not solid light.
What on earth?
I think they suspected things might turn out oddly and this was because earlier someone had managed to measure the speed of light! But that's another story.
Luckily as they had been enthusiastic stone-in-water throwers they realised that the light was acting like waves or ripples in water. As you know waves spread out in a circular pattern and they have ups and downs, (peaks and troughs). Big waves can make you sick! Beware, anti sick pills make RLS worse.
What was happening was where the up of one wave met the down of the other, it was dark. Where two ups met it was light and all other meetings were lack lustre. Something like an online dating site.
Thus "interference" was invented, mystery solved!
Waves : one point, corpuscles none.
Things never last!
Someone came along later and said light isn't waves like ripples in water because sometimes it acts like tiny particles like electrons or protons. (And vice versa).
These particles came to be called photons, without which we would never have had StarTrek.
Low and behold other forms of "invisible light" like ultra violet also seem to be made of particles.
Somebody called these "quanta". This was the birth of quantum theory.
Corpuscles : one point, waves - one point too?
The next bit gets weirder. it's difficult to understand. Nobody actually understands it.
Thanks to modern technology, it became possible to make a magic torch that only produces one photon at a time.
Applying this to the two slits scenario.
It was set up so the magic torch fires one photon only at the two slits. The photon goes through a slit, hits the screen and dies!
The torch then sends another photon. The same thing happens.
THE TWO PHOTONS COULD NOT POSSIBLY INTERFERE WITH EACH OTHER.
No more than Sir Isaac could interfere with a later famous chap called Albert. They didn't live at the same time.
The torch is set up to fire lots of photons over a period of time. The experimenters leave the torch to it and go home. Naturally, they switch off the lights and put the cat out. The cat was called Schrodinger and he was very clever. But that's another story.
Next day, the guys come back. They had fired many photons through the slits in such a way that NONE OF THEM COULD INTERFERE WITH EACH OTHER.
Eagerly they rush to see the screen to expect to see one or two lines corresponding to the two slits.
What's this?
An interference pattern!!!
This must mean that each photon, despite never having encountered another photon KNEW where to go to form the interference pattern.
Grrrrr! Must be some mistake. Let's do it again, but this time, we'll watch it. That'll stop it playing tricks on us.
So they do and they watch and this time, da da - two lines. No interference pattern. Phew!
Let's just try that again. They start it. Getting late, go home.
Next day - interference pattern. Watch it - two lines.
Welcome to the weird world of quantum mechanics where reality changes according to whether it's being watched or not.
Great distraction technique, have you forgotten your RLS?
• in reply to
You left out the part where everything, including humans with RLS, are everywhere and nowhere until an observer collapses our wave function. You see, that’s the part of the story that makes one’s brain implode and forget about RLS.
• in reply to
I don't think that's quite right.
I think you can either have RLS symptoms or NOT have RLS symptoms AT THE SAME TIME.
In which case your experience depends on a) being in a quantum state and b) what you focus on.
I'm not sure what "being in a quantum state"means but it may mean you need to be more particular and stop wavering about.
You're right, Manerva, I HAD forgotten my RLS. And as often as I try to educate myself regarding quantum theory, I must admit that you HAVE added a dollop to my understanding. But, boy do I appreciate the amount of time you put into helping us who suffer from this dread disease! 👍
Really, I think it's just plain old ferrous bisglycinate that they found to be best, but they abbreviate it FIS for ease of reference. No?
Ya know, you really should try the FIS (as I have described here) because then I will allow you to call me every name in the book if it doesn't work for you and I won't say a word back. Now how often does a woman propose that to you? Hmmm?
• in reply to
Fisioeme is an actual product I see, Italian. It's a combination of Ferrous Bisglycinate 30mg, vitamin C 80mg and Folic acid 400mcg
I'm not easily persuaded to take any supplements. currently I have half a drawyer load of unused supplments including iron.
• in reply to
You have no choice at this point Manerva. Don't you see what's happening here??? It's called the Helsinki Syndrome or Stockholm syndrome. You are starting to sympathize with your tormentor - me - who goes against everything you believe to be correct and true. I love it, you're stuck, just surrender.
• in reply to
Our only difference is that you like to take iron every day, me every other day.
• in reply to
Hmmm, but you’re in it for the long haul and use other substances to provide nightly relief from the symptoms of RLS. I’m into the iron for the short haul - meaning immediate relief without caring about increasing my iron parameters. You truly believe from the depths of your soul 🤨 that it is physically impossible for iron to do that. So what I suggest you do is to take the iron first before other meds in the evening or whenever the RLS is making you crazy and see if you get relief within one hour. If you don’t I will resign my position here as iron promoter in chief. Deal?
• in reply to
You don't have to resign anything. You only need to continue to tell people of your experience. It's your experience and other people may benefit from it.
I'm sure many people will try what you suggest and it's worth a try. It may even work for them too. I have read of others having the same experience, so not that unsual.
I'm not sure if I recall all you've written, or recall all of it correctly, but I think you may have written that on nights you take iron you're OK and on nights you don't symptoms occur.
In the long haul then, this would suggest that you have to keep taking the iron. At what point could you stop?
I can say that I once took something for my RLS and on the nights I took it, I had no RLS and on nights I didn't take it, I had horrendous RLS. It was called pramipexole.
I have taken iron. On nights I took it, it made no difference to my RLS and on nights I didn't take it, it made no difference. I took it for months (as recommended) and it made no difference.
That is my experience ONLY and based on that alone I can't tell people they should take iron every night. NEITHER can I tell them not to.
I also recall, I hope I'm right. that you've written some other important things I wasn't aware of about iron and I've now incorporate this into the suggestions I now make.
As I've suggested elsewhere, I think it a good idea if you summarise all the points you wish to make about iron and submit them in your own separate post. It could be really useful.
I'm genuinely grateful to you for some, if not all the comments made to me, but I'd like to say a couple of things which are in no way intended as any criticam whatsover. I mean this.
Firstly, I admire your energy and perseverance in writing to me, but I'm a bit overwhelmed, at the moment about all the notifications (40 this morning) I'm getting of responses and if I were to reply to all, I could end up doing nothing else all day.
Secondly consider this -
recently I wrote something in the forum in response to what difference would it make if somebody removed a drug from a capsule and ingested the powder.
One of my comments was that sometimes substances were only put in capsules because they tasted disgusting. This avoided you tasting them at all. As an example I mentioned cod liver oil. It tastes disgusting! However, it's a good anti-inflammatory useful for things like arthritis.
It's sold in capsules you swallow hence avoiding the taste.
One person immediately responded to say that they were going to go out and get some cod liver oil capsules and take them for their RLS!
I have to point out that there are other reasons for putting substances in capsules and it's not generally a good idea to remove them from the capsule. This is potentially dangerous.
• in reply to
Maybe we should start to recommend that formula to people on here. I have another theory I want you to think about. What about taking Ferritin supplements. Ferritin readily crosses the BBB. Researchers are beginning to use Ferritin to piggy back medicine onto to treat gliomas. Maybe I misinterpret but isn't the RLS brain or a part called the substanta nigra incapable of storing iron in Ferritin form. So confusing because supposedly the mitochondria in our RLS brain are hogging all the iron. Anyways, if our brain cant synthesize and maintain Ferritin then why not just squeeze it on in there. Maybe then our brains will have enough iron to start building up those D2 receptors and not just using it to putter along.
I read your four and I’ll raise you one. sciencedirect.com/science/a... My take away is that mitochondrial ferritin (elevated or otherwise) has a neuroprotective effect. They clearly have no idea why we with RLS have elevated MtFt in the Substanta Nigra but lowered ferritin in the rest of the cell in this area of the brain. Back to square one.
"Linked to disease occurrence" Don't they mean diseased mitochondria? I also have AMD (in both eyes) ... never had iron chelation suggested to me.
I used to supplement with CoQ10. I stopped taking it (some years ago) because, as I remember, I thought I read that it can actually damage mitochondria ... don't know that I want to suggest that excess CoQ10 ingestion is the cause of RLS.
• in reply to
Perhaps it's like living in a terraced house. It used to be that I had a shared water supply with my 3 neighbours. Every time one neighbour switched on a tap (faucet), the other 3 neighbours suffered.
The only safe time to have a shower was in the middle of the night.
I installed my own supply after which, the first time I switched on a tap, it knocked me over.
Thanks, I haven't awarded the chocolate muffin yet, but this is a strong contender.
• in reply to
Yes I think it's worth promoting that particular formula. I don't know if there' some other brand with that formula.
I didn't know you can get ferritin. If so, I wonder why it hasn't been suggested for RLS rather than iron.
• in reply to
Omg, don’t even get me started. Nothing in this world is geared with RLS in mind…NOTHING. Especially not iron infusions. Several years ago I emailed back and forth with one of the collaborators on Injectafer trying to explain to him how ferrous bisglycinate is a superior form of iron especially for RLS sufferers or at least heme iron. He didn’t care. They use the most cost effective iron that is still able to raise iron levels without adverse side effects. Well at least it’s not iron sucrose. If you inject iron sucrose then how is the body ever able to break it down without the benefit of digestive enzymes? What chance does it have to cross the BBB? Doesn’t it stand a better chance if it’s in amino acid form?I don’t get any of this. I don’t see how infusions ever help anyone with RLS, unless they were truly anemic to begin with. Even then I’m not sure how it helps.
• in reply to
Omg Manerva, I have been going down this rabbit hole way too long and I just keep repeating the same sh-t. It's like that movie Groundhog Day. I found the email exchange I had with the biologist regarding iron infusions. That was six years ago! Then the psychopath in chief was elected and my attention was drawn away as well as with the pandemic. Time to move on to other pastures and annoy other creatures. Below is the email exchange. It might be hard to tell who is saying what. Plus my full name has been deleted to protect the innocent and silly. It's best to read from bottom up. I'll keep my account active until tomorrow but then I need to join RLS Bloggers Anonymous. I have nothing more to add here and clearly the biggest problem is augmentation which I know nothing about. Keep fighting the good fight my friend.
From: Auerbach [mailto:mauerbachmd@abhemonc.com] It's already in UTD. All the more reason to use IV
On May 9, 2016 2:13 AM Sharon wrote:
Wow, you know your stuff. I think you’re the real Ironman. With that said, I am no fan of ferrous sulfate. I truly believe it’s outdated. As I mentioned, my RLS took a turn for the worse when I was supplementing with melatonin. I bought iron-bisglycinate because of its claim of gentleness on the stomach. As mentioned before it was effective at relieving my RLS with the first capsule. One night I ran out and my local health food store was closed so I went to Walgreens and bought ferrous sulfate, preferring the possibility of an upset stomach to a sleepless night. I took one tablet fully expecting complete relief in an hour. Two hours later with RLS as bad as ever I took a second pill and probably eventually fell asleep. The bottle is still in my cupboard seven years later, full as ever. Fool me once. When I increased the melatonin from around 1mg to 3mg I needed to take two capsules of the bisglycinate. That’s when I figured it was time to research RLS again and discovered the connection with melatonin.
I read the following article about a week ago and was able to find it again. Sometimes I’m unable to find articles again. We’ve come so far so fast. A decade ago we didn’t even know about hepcidin. I’m sure you know all about this but I found it astounding and so relevant in terms of treating RLS symptoms with iron:
Subject: RE: NCT02499354, IVOR-IDA, Pilot Study: Randomized, Placebo-controlled Comparator Trial of IV vs Oral Iron Treatment of RLS With IDA. (IVOR-IDA)
Thanks, read the section on Treatment of IDA in adults in UpToDate. It's one of the better ones.
On May 7, 2016 6:28 PM, Sharon wrote:
If you’re ever lecturing in Illinois, Indiana or Wisconsin be sure to email me. That is my territory in terms of investigations.
I wake up every morning thinking about our gut microbiome and go to bed doing the same. Iron is an integral player so I would very much enjoy any lecture on the topic. Speaking of pregnancy, supposedly we inherit our gut microbiome from our mothers. Makes sense, no? Maybe rather than genetic some diseases are simply inherited via the gut?
I will be reading all of your online work. As a member of the human race (most days), I thank you for all of your contributions to our collective knowledge.
From: Auerbach [mailto:mauerbachmd@abhemonc.com]
Sent: Saturday, May 07, 2016 6:07 PM
To:
Subject: RE: NCT02499354, IVOR-IDA, Pilot Study: Randomized, Placebo-controlled Comparator Trial of IV vs Oral Iron Treatment of RLS With IDA. (IVOR-IDA)
Very interesting. Very. Proferrin was compared in a double blind to ferrous sulfate and had no advantage in safety or efficacy
On May 7, 2016 5:08 PM Sharon wrote
Next life I want your job. Speaking of pregnancy, some believe that RLS may originate from an iron deficient womb…meaning children born to iron deficient mothers. Or lack of iron in early years. I am much more interested in the gut microbiome than any other topic or microbes in general and this may dovetail into all of the diseases you mention. When the body senses infection it releases hepcidin (like you don’t know this) or what I fondly call the iron gatekeeper. Every organism on earth loves and needs iron (except for two micro-organisms?) so our withholding of iron during time of infection is a thing of beauty. But with chronic diseases like Crohns then I guess you have to buck up against Mother Nature and infuse iron???
Well, with RLS, it’s our brains not so much our bodies that are anemic. We have people on the forums with hemochromatosis that have RLS. Iron, iron everywhere, but not a drop for our brains…at least not at night. I don’t know what it is about the RLS brain but we just can’t store away a little iron for a rainy day. And getting back to pregnancy, the vast majority of the world can get pregnant and even be iron deficient and pregnant, yet never feel a twinge of RLS.
I wonder why the neurologists chose ferrous sulfate…cost? Iron bisglycinate, according to my research, is the only one that stands a chance of crossing the BBB. Or heme iron. One day I will try Proferrin rather than the bisglycinate. As you are aware, the results of that 10 year long study, indicated a link between heme iron and CHD, but not non-heme iron.
Thank you for your suggestion regarding the clinical trial. I will give it serious thought. My RLS is barely there and when it is I take iron. In my early 40s I decided it would be a good idea to start taking melatonin. My mild RLS turned into restless BODY overnight. I did research and decided iron was the way to go. Three years later I finally made the connection. The day I stopped the melatonin is the day my RLS went quiet.
From: Auerbach [mailto:mauerbachmd@abhemonc.com]
Sent: Saturday, May 07, 2016 4:41 PM
To:
Subject: RE: NCT02499354, IVOR-IDA, Pilot Study: Randomized, Placebo-controlled Comparator Trial of IV vs Oral Iron Treatment of RLS With IDA. (IVOR-IDA)
I’m finishing a slide set for a talk I’m giving in Texas in two weeks. I’m not a scientist. My work is single dose infusions of iron for a host of conditions associated with IDA. RLS popped into my world when Allen and Earley asked me to treat a few of their patients and then when they learned about the huge number of new anemia patients we (partner and I) see (25 per week) they asked if they could do the epidemiology and we uncovered a huge relationship between the two. While I find the science fascinating, my main work is with pregnant women. Just published a 200 patient observational study and am in process of preparing manuscript for first ever prospective study of IV iron in gravidas in US. Diseases like inflammatory bowel disease, heavy uterine bleeding, gastric bypass, hereditary hemorrhagic telangiectasia, angiodysplasia and any malady associated with IDA is what I’m interested in. I wrote the section on treatment of IDA for UpToDate and am doing another education session at the American Society of Hematology’s annual meeting (did first one ever in 2010) on total dose infusion of iron.
I don’t have the wherewithal to do any basic research in my practice but we sure do generate clinical data. The next (and probably last) big study will be IV versus oral iron in pregnancy with a built in measure of baby outcomes. That will bring me into late 70’s at which time it’s probably time to call it a day. You have a pretty strong data base for a “pretend scientist” and I hope you find a way to get rid of your RLS. If you are iron deficient, stop taking all the treatment for the RLS for a month and be part of the trial. The IV iron is ferumoxytol (two 510 mg doses one week apart over three minutes each) and the oral iron is ferrous sulfate but if there is intolerance you stop, are a treatment failure and get IV iron off study. In any event, good luck and thanks for all this information.
From: Sharon
Sent: Saturday, May 07, 2016 3:57 PM
To: Auerbach
Subject: RE: NCT02499354, IVOR-IDA, Pilot Study: Randomized, Placebo-controlled Comparator Trial of IV vs Oral Iron Treatment of RLS With IDA. (IVOR-IDA)
Not sure why the two of us are working today. I’m an investigator for the *** but at night I’m a pretend scientist. I don’t think you’ll find out about the standing and walking from the RLS journals except that it does relieve RLS. Instead I tried to teach myself about the bio-chemical reactions that occur when someone goes from a prone position to a standing one. One of the processes that occurs is the release of dopamine. Another occurrence that lends credence to this theory is the fact that many RLS sufferers will sit on a stability ball while watching TV so that they don’t have to get up. But hey, they’re still sitting? The trick is that the brain senses imbalance while on a stability ball and releases dopamine.
Lastly, a vast number of people on the forums complain that their RLS got worse or was triggered when they injured their spine. I think that spinal injury throws up a road block to the neurotransmission of dopamine. The vast majority of the world can injure their spine or develop back problems and never feel so much as a twinge of RLS. Once again, in my mind I imagine the non-RLS world having a strong dopamine signal traveling down their spines whereas we with RLS have a somewhat pathetic one. One little curve ball either upstream (anti-histamines, anti-depressants) or downstream (spinal injury) and we have all out RLS.
Well that’s our tale of woe. Sorry to burden.
From: Auerbach [mailto:mauerbachmd@abhemonc.com]
Sent: Saturday, May 07, 2016 3:38 PM
To:
Subject: RE: NCT02499354, IVOR-IDA, Pilot Study: Randomized, Placebo-controlled Comparator Trial of IV vs Oral Iron Treatment of RLS With IDA. (IVOR-IDA)
Now I am completely ignorant. Allen and Earley the two neurologists I'm working with may know but I'm clueless.
On May 7, 2016 2:56 PM, Sharon wrote:
You’ve been very kind. Last email. Fun tidbit about RLS, I think. I wanted to figure out why we get relief when we stand and walk. Could it be that the brain releases dopamine (from mesocortex?) in a split second to balance us when we stand and coordinate movement as we walk? Several of us on the RLS forums have noticed that we do not get complete relief when we stand and lean. Could it be that the brain does not sense enough imbalance and hence releases less dopamine?
Much luck with the clinical trial.
From: Auerbach [mailto:mauerbachmd@abhemonc.com]
Sent: Saturday, May 07, 2016 1:26 PM
To:
Subject: RE: NCT02499354, IVOR-IDA, Pilot Study: Randomized, Placebo-controlled Comparator Trial of IV vs Oral Iron Treatment of RLS With IDA. (IVOR-IDA)
I really don't know but the pagophagia disappears during the infusion and the RLS often the same day so probably yes
On May 7, 2016 1:14 PM, Sharon wrote
Do you think the IV iron fills in the brain iron reservoir? Do you remember the Popeye the Sailorman cartoon? He would guzzle down a can of spinach and we would watch his muscles grow big and strong. That’s what I picture with the infusions. If you’re infusing a type of iron that can cross the BBB I picture the dopamine receptors growing big and strong and maybe some new ones sprouting. But then, eventually, like Popeye’s muscles, they wither on the vine, because that is RLS…the anemic brain.
From: Auerbach [mailto:mauerbachmd@abhemonc.com]
Sent: Saturday, May 07, 2016 3:49 AM
To:
Subject: Re: NCT02499354, IVOR-IDA, Pilot Study: Randomized, Placebo-controlled Comparator Trial of IV vs Oral Iron Treatment of RLS With IDA. (IVOR-IDA)
Interesting. The study is half over. The IV iron often acts for protracted periods after one dose.
On May 7, 2016 3:27 AM, Sharon wrote:
Good evening doctor. I just wanted to share with you what many of us on the RLS forums have found to be helpful. Iron-bisglycinate on an empty stomach before bed or during an attack. It works with the first pill and for most people provides relief for the night. I personally tried ferrous sulfate but it did not relieve the RLS. I think the iron-bisglycinate is able to cross the blood brain barrier and shores up our pathetic dopamine receptors just enough to quiet our arms and legs. As you know, everyone’s serum iron drops at night, but the non-RLS world has a brain iron reservoir. So they can make a withdrawal at night if needed. Supposedly we with RLS do not have much of a brain iron reserve. It’s almost as if we’re sneaking our brains a little extra iron when it needs it. Another favorite is magnesium L threonate.
Be well, and your patients too!
Sharon
• in reply to
Some of the information you've given about iron is really useful.
I've got to much iron (haemochromatosis) and still have RLS, however I switched from Roprinorol which did help but augmented, to generic for Lyrica, the pregabalin 50 mg. 2 hrs. before bed. Two weeks and no RLS. I found it takes 2 hrs. for it to work. If I take it to soon and go to bed my RLS comes back.
Hi Manerva, I found this figure in a lately published article called "Emerging Concepts of the Pathophysiology and Adverse Outcomes of Restless Legs Syndrome" by Mr. Garcia-Borreguero. Unfortunately, the article was not published for free, so I don't want to publicly upload it due to legal issues.
I think the story is great.My husband had become so difficultmoody rude, aggressive, negative , hatefuly I was worried he had Alzheimers.Unbeknown to him I was ready to end our marraige but first I need to kinow was he ill and I could save him and us.
Lots of test were performed they found he had a few health problem=s and he had some exploritory surgery he woke up with an iron infussion as they said he was extremly enemic cause unknown He has had to continue taking iron which he does.
I cannot believe what it has done to his mental attitude , all agression and bad behaviour is gone hen he stopped his Iron unbeknown to me the monster was starting to show its head.
So I plucked up the courage to ask the monster if he was taking his iron he said NO.
so he went back on his iron and the lamb returned Obviously His iron donut caught the wrong bus and he has issues with absorbing and storing Iron.
From what I've seen, rarely. If they do, possibly antiques.
The common city dwelling folk of Russia simply couldn't afford furs. Those that can, probably don't live there. There are still some tribal russians that still use furs, but they get them as a result of their lifestyle.
I was joking of course. Where my wife comes from it can get to minus 30C in the winter, but plus 30C in the summer.
I was there in January once and I nearly suffered heat stroke. In the apartment the heating is switched on in October and switched off in March. There is no way you can switch it off or turn it down. It is on full blast ALL the time.
I don't know how it is in Oz, in the UK the only furs you can buy are antiques. Traditional new (real) furs are illegal.
Yes, iron has anti-depressant, anti-anxiety properties - probably related to fact that it helps our brains (all brains, not just RLS ones) release dopamine. People on here will jump down my throat for saying that so I should probably just post the articles now. It really is a "feel good" supplement. Aside from stopping RLS symptoms in its tracks (quite often) a highly bioavailable form of iron is a great sleep aid. Anyone suffering from insomnia should give it a go, regardless of RLS. Then you can run for the Ambien if it doesn't work. Though I think trazadone is preferable to Ambien. Don't you love it when a medical mystery is solved and then so easily resolved. In my life it is so rare that a "natural" supplement is truly effective at treating some condition I develop ie heart palpitations. And I pour my heart and soul into research and will take the substance religiously, but more often than not I am sorely disappointed. Iron is one of two that I have found in my lifetime that resolves the condition 100%. The other is zinc carnosine for heartburn and reflux and I wouldn't say it's 100% but close. Actually just the opposite has happened with so called "natural" treatments . Melatonin robbed me of many nights of sleep because I didn't realize it was giving me RLS from hell and magnesium was giving me all day, every day migraines. I managed to work, but it basically ruined my life for years all because I was too stupid to make the connection.
I too have a hiatal hernia. I (not the medical community) have decided that it is these hernias that are the cause of 99% of cases of reflux. Doctors would say more like 50%. A lot of time these hernias are missed on x-ray. I am trying to lose as much weight as possible because I truly believe if you can get your stomach to rest in place comfortably & consistently, even if you have to massage it down everyday, then you might give that sphincter muscle between the esophagus and stomach a chance to regain normal functioning thus preventing reflux. The best, but oh so expensive zinc carnosine that I like is by Lane Labs and called Nature's Lining. I was taking a boat load of it until I started on a PPI about three months ago and then I would forget to take it because I didn't have that slight burn anymore that would make me run for the zinc before the burn turned into a flame. Try not to take zinc on a completely empty stomach it will make you nauseous.
A funny thing happened to me the other day on the operating table. I went in for my quite frequent esophageal stricture dilation when afterwards my doc told me I had gastric erosions (aka ulcers) (on top of EOE and strictures). I said "what the fudge you've been scoping me for years and I never had these." He said "I'm not worried they're small." I said I know why I have them - it's because I haven't been taking zinc carnosine. He shrugged and walked out. Supposedly science has discovered that stress really doesn't cause ulcers, but rather it's NSAIDs or helicobacter. I do take NSAIDs, but only maybe once a week, but I have Woody Allen level anxiety. I always thought of/ myself as a laid back person but then when I started having three heart attacks and two strokes before relatively minor medical procedures (like dilations) I realized I'm really kind of high strung. To make a long story short, I still think that gargantuan size anxiety and/or combined with infrequent NSAIDs can cause ulcers. However, as long as I was overdosing on zinc carnosine, it kept any gastric erosion at bay, kind of the way iron keeps the RLS at bay. Wow, am I a talker or what?
I'm not a great lover of "naturals" myself. I always shudder when I read the word and it's not due to RLS.
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I'm a born experimenter. I have no choice in the matter. People talk about free will, I know I have none. I know that somehow, someway I planned this silly life of mine long before I was born so I have given up trying to be something I am not. My husband is a very short, very skinny, incredibly myopic billboard salesman who is an Eagle Scout that walks the straight and narrow and does not believe in the life of the soul or natural medicine or prescription medicines for that matter. I did not want to fall in love with him and marry him, but I had no choice. He and I have been together for all of eternity in one way or another. I do not want to be on here trying to convince people to take iron for their RLS. Nor did I want to be sending out hate tweets about trump for the four year break I had from this blog and then the one year of research regarding Covid 19. I recommend rutin, baicalein and inhaled nitric oxide btw should you find yourself with Covid. I just want to be watching the Fast and Furious series in the evening and eating Doritos. Alas, that is not part of the plan, this BS is.
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Ah! Now you're getting philosoohical.
OR, you're a time traveller, planning YOUr life BEFORE you were born.
Worse still, perhaps your life was mapped out for you, by SOMEBODY ELSE.
Alternatively, you could claim you had an individual soul before you were born, in which case where did it come from?
I may be wrong but I thought those that believe in a personal soul believe it develops during life, not before.
This causes a tricky issue in that you need to decide at which point an embryo becomes invested with a soul. - the arguments between pro and anti-abortionists.
My view is that there's something in the origins of the word spirit, unless you think spirit is something different to soul. The origin is the latin word spiritus which means breath. Hence the terms respiration, (meaning breathing), the ambiguous "inspiration" (breathing in, or the other meaning) and expiration (breathing out, or dying).
This also reflects what the christian bible says about how God brought Adam to life and the eastern religious concept of prana, the spirit coming into the body when it takes it's first breath. i.e. at birth.
Personally I don't remember any of this so it's not part of my self-concept and may not have anything to do with RLS.
I have to say raising my iron levels has neither resolved my RLS nor made me into a saint but I am generally finding it slightly less of an issue so the trend is at least positive. Maybe I need to raise them some more.
No, no, please don't raise your iron levels if you think I am at all right or even sane. Just take one or two capsules of ferrous bisglycinate on an empty stomach about an hour before you go to bed. Your ferritin levels have nothing to do with RLS. It's that night time drop of free floating, unbound iron in your blood that happens to everyone that causes the symptoms of RLS. Just sneak your brain a little iron at night and you should be fine. But don't even take me at my work. Do a little experiment. Let your RLS kick in - whenever - day or night, I don't care. Then take the ferrous bisglycinate when the RLS is starting to drive you crazy. If I'm right your RLS should dissipate in about an hour. If I'm wrong, I want you to come on here and call me every name in the book so maybe I'll finally leave.
I do "take one or two capsules of ferrous bisglycinate on an empty stomach about an hour before you go to bed" every other night and t doesn't stop the RLS although as above I may be seeing a general improvement. I see no difference between the nights when I take it and when I don't.
FUDGE!!!! WTF. Are you on dopamine agonists or withdrawing from them? Or are you taking anti-depressants? My little trick seems to be much less effective in either of those situations. There's a point of no return. If someone's receptors are so beaten down by the agonists or if there's so much competition from anti-depressant then it seems like it would take a whole bottle to provide relief. For example when I was taking a small amount of melatonin - 1mg or less I got relief from one capsule. When I upped the melatonin to 3 I needed 2 capsules. When I went to 5mg of melatonin there was no amount of iron that helped. Yes, I was that stupid to not make the connection. I drank the melatonin kool-aid. It promised to make me happy, to sleep better, to stay young forever. Eventually I read on here or some such blog that melatonin is a big no for RLS. So is this you?
I'm not on any medication nor have I been apart from pregabalin for a year for neuropathic discomfort, but that was a couple of years ago. I'm pleased you have something which works for you, I'm simply replying as you suggested.
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I think you may be going a little too far "FUDGE !!! WTF" I think if you want others to accept your experience of things, then you have to accept their's.
Ok, so how bad is the back injury? How badly is your spine affected? Allow me to go into my usual shpeal. The vast majority of the world can injure their spine and never have so much as a twinge of RLS. Then there are those of us that have a somewhat lousy dopamine transport system, but we're fine and we don't even know anything is wrong until we get pregnant or injure our backs. Then we realize we're screwed. You see, most people have a steam of dopamine neurotransmitter bouncing down their spine, heading to the peripheral nervous system (arms and legs) where it keeps them nice and quiet all day and all night. We with RLS have a trickle. But hey, that trickle for a good portion of us and for a good portion of our lives is enough. It's good enough until it's not such as when we injure our spine or age and our receptors get enough worse. We with RLS really need perfect spines. It's hard for that trickle to push pass any road blocks. Normal people have a stream and it's quite easy to push pass that road block and continue on to quiet the arms and legs.
Still anything you can do to increase that trickle, like taking iron (or god forbid a dopamine agonist), should help. Yet it's not. So maybe I should stop pushing the ferrous bisglycinate trick.
I think you may be right that some of us have conditions which are present in the background and it takes a trauma to flush them out. I believe I had RLS from an early age but it was very rare that it caused a problem, and was only after I had my back issue where I had discs rubbing and pressing against nerves that it became an issue which I relate to "nerve sensitivity" which is what the Health Service described it as. I'm not saying that iron isn't helping, just that it's not that 100% light switch cure. Many people say it takes a while for iron treatment to have an effect.
Thanks Jools but it was actually Tennis 52 that was speculating whether stopping the iron is what brought about his palpitations. I developed palpitations about 8 months ago (while on iron as always) and tried the recommended natural treatments such as Hawthorn Berry and Taurine and even magnesium (which I know provokes migraines in me) all to no avail. I went to a cardiologist for the first time in my life and he prescribed Metropolol which I hate to admit has worked. My palpitations I believe were caused by Manerva’s ridiculous story telling and terrible puns.
No, Metropolol seems fine in terms of RLS. The worst offender for me these days is eating even a small amount of food late at night will set off RLS within about 15 minutes. What the heck is that all about? One of these days I will research the bio-chemical reactions in the body upon eating. My GI doc (who is brilliant) tells his patients to get the majority of their calories between sun-up and sun-down...that your GI tract has a circadian rhythm of its own. But that still doesn't really answer my question as to why a snack at midnight will set my legs off. Then secondly, a big meal earlier in the evening, especially a restaurant meal will set my legs off - to the point I'm squirming in the car as I'm driving home. I've never had it last to bedtime though.
I swear, if someone else wrote this I would shrug it off, because that's how I am. It has to happen to me for me to believe these bizarre phenomena.
It will be something that hasn’t yet been worked out involving some other chemicals as well.It may not even be iron. It could be the shortage of iron is an indicator of another process or chemical.
I hope there are some wise & lateral thinkers out there available to work it out.
Thank you. I'm in the love marmite category, and asked the question with the same tongue in cheek. Now to persuade my partner in the hate marmite category to give it a go lol
A large part of the gustatory experience is also due to the olfactory experience.
To us, that's taste and smell.
I saw on TV many years ago people who were given various things to taste whilst having their sense of smell blocked and their eyes covered up.
In one example people were unable to tell the difference between an apple an and an onion.
This suggests a similar experiment could be carried out, but please note, seriously, that since the Nuremburg trials post WWII such experiments cannot be carried out on people without their informed consent. Voluntariness is a basic human right.
Hence, with appropriate consent a blindfolded, smell blocked partner could have a spoon of marmite inserted in their mouth.
Follow the fireworks code and stand well back.
Incidently, the same programme asked somebody to put on prismatic spectacles that turned everything upside down. He was asked to stand up and nearly fell over. When asked he said everything looked upside down. He was asked to wear the spectacles all the time he was awake for a week.
In the next programme, a week later, still wearing the spectacles, he was asked to stand up. He had no problem. When asked he said everything looked the right way up. He was then asked to take the sepctacles off which he did. He nearly fell over. He said verything looked upside down.
He recovered from this in a few days.
Which as far as iron goes, is totally irrelevant.
Thank u for being happy for me but what about my happiness? I’ll be happy when you have equivalent relief. Out of a morbid sense of curiosity, what kind of oral iron did u try? Was it ferrous bisglycinate taken on an empty stomach during an attack or right before. That is the only kind and only way it will help me. I have taken iron in the morning and it does nothing for me. And I have taken ferrous sulfate in the evening and it does nothing for me.
Some of Fred's friends took a different bus! It was a skinny bus and zoomed right through the BBB!
The bus was called Lactoferrin - it is built in a factory from milk! Read more...
"9) Helps Increase Iron Absorption. Lactoferrin intake by adults helps increase iron absorption in the intestine. It is also responsible for the delivery of iron to cells, important for basic cell function. In pregnant women, straight iron vitamins could be an unsafe supplement for the fetus. Lactoferrin proved to be a viable substitute for increasing iron levels while reducing side effects."
Eitheror did you mention that iron is cure for palpitations. I have this issue which comes and goes. Sometimes more sometimes less. Lately I was having gentle iron for my RLS(mild) but stopped last week to check if my loose stomach was caused by it. The stomach is better but still semi solid (probably not caused by it) but palpitations have increased.
Im thinking of getting back on the gentle iron but not sure.
Sorry. That is very interesting. I know that anemia is often the cause of heart palpitations. The medical community doesn't believe in incremental changes causing or resolving medical issues. However I do. So that incremental iron may have been keeping the palpitations at bay despite the fact that you are not anemic.
I can only say that if you take iron with food, it will prevent it being absorbed. So taking it with food is no better than not taking it at all.
I wonder why it upsets your stomach. It can be quite upsetting to the intestinal tract generally, but it's usually lower down in the tract, i.e. the small and large intestines.
SO, is there anything else that upsets your stomach, is it only iron? Do you have any kind of gastric condition ? Do you take any other medicines for your stomach at other times?
When you take the iron do you ONLY take the iron and nothing else e.g. juice or water or other tablets?
Being from across the pond, I am always late to the story. This post has been saved there is so much good information here! Thanks to everyone.
I do have a question for those taking iron. How often do you monitor your iron levels? What ferritin level is to much and what is? I am trying to stabilize mine. At this point I am thinking one ferrous Bisglycinate 3 times a week.
My goal is a Ferritin of 200. I was 314 last test, 154 the latest.
That was great!!!!!Being a retired science teacher, I can appreciate the guided imagery, though I always used what others had written and not ones I wrote myself. So, I am REALLY impressed!
I took imagery from a real founder. Les Femhi at Prinstin University. The technique was OPEN FOCUS. I use it all the time instead of Yoga or General relation which do not cure like open focus and imagery. I am ried but will come back in several days. Good for you
I wouldn't say that generally gabapentin makes your memory significantly worse. It was a bit of banter really. It's true I forget words sometimes, but they usually come back.
The phenomenon of failing to recall words is not necessarily due to taking gabapentin, other issues can cause this. In fact I believe I had a bit of a problem before I started on gabapentin.
My memory is generally very good, being a little lost for words sometimes, for me, might be an advantage
My wife doesn't take gabapentin , but has trouble remembering words, she never seems to remember what "stop" means. She calls the gardening shears "scissors" and frequently changes gender when talking about people It gets very confusing.
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It's best to read from bottom up. I'll keep my account active until tomorrow but then I need to join RLS Bloggers Anonymous. I have nothing more to add here and clearly the biggest problem is augmentation which I know nothing about. Keep fighting the good fight my friend. 
Dragging a millstone up a mountain. RLS blind spot, patient’s apparently don’t know best.
Making rls manageable, a continuing story
My RLS Story
Dealing with RLS in a hospital setting
