I participate in a forum called Trying Low Oxalates. It is a very good forum but the opinions can be all over the place.
One of the more respected members (super intelligent) posted this link today in response to someone who claims that her back pain is caused by B12 supplementation. (she was found to be severely deficient)
I responded that I thought perhaps some healing was going on or that maybe some other health areas, or some imaging of her spine should be done before she stops taking B12.
The members on TLO tend to be quite adamant about many things increasing oxalate. (and that every symptom is "oxalate dumping." I tend to think that high oxalates do not cause every single symptom or health problem someone has. I think this is a classic case of taking one diagnosis and applying it to every health problem without doing due diligence.
My comments (and links to articles that say low B12 can cause high oxalate) are being ignored as the discussion continues about specifically cutting out hydroxycobalamin. I also shared that my oxalate level (that was very high at one time) was no longer high after just one year of B12 hydroxy injections.
Any thoughts anyone? This is really bothering me. I just don't need to hear that the B12 is causing my spine problems....
Thanks! Eileen
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Your B12 is not causing you any spine problems . In a country as large as the USA , you are bound to get a percentage of people with mad ideas . There is NO scientific evidence tor that at all . There are going to be coincidences which might lead some people to believe that . Hydroxocobalamin is a marvellous type of B12 . Keep on injecting . Best wishes .
EiCa , if your oxalate levels have gone down as you have been injecting, then it proves it can't be a problem. We all know that our nerves tend to feel worse as they heal and we have a stage of seeming to get worse before we get better.
Unfortunately in recent times there is an increasing number of people who are turning to "conspiracy theory" type mind sets, whereby they lose their ability to reason and see the bigger, balanced picture. They actually choose to get hung up on something which isn't true, follow it, and doggedly believe in it, in order to feel a sense of power and control. Weaker people easily get addicted to this. If they can then persuade others to their errant thinking, against the science, this increases their sense of power.
The likes of us, who like to hear all the facts and options before drawing our own balanced conclusions, actually end up taking some notice of their nonsense as part of the process, and it means we are easily confused by what they so persuasively say (because they believe so strongly) and they try to feed it to us to get their power kicks.
Once you're aware of what they are doing (as you are) you can get your sense of balance back (which you have), but I'm afraid that you won't be able to persuade them to see sense because it doesn't serve their purpose: only believing that which is wrong does.
I'm sorry for you that it has turned out like this but there's nothing you can do, save state the facts and hope that others see this and don't fall into their trap.
Thanks for your reassurance, Denise. I wrote more in my first response to Wedgewood, but yes, everything you say is right and I need to stop trying to persuade people who just don't want to hear it! The trouble is I try to think for myself and NOT buy into things that whacky to me but the "Guru" spoke, and I plead guilty to giving it some weight. I knew my friends here would straighten me out!
Thank you for taking the time to reply to each of us - I have read your other responses and the other great contributors here, as you have triggered some excellent responses from wonderful people.
Just an aside, I casually follow a couple of chronic pancreatitis groups and a heart-issues forum, as well as this one, and I am amazed by how different the people are on the other groups!
The CP groups and heart forum have a number of people who are always trying to justify their bad lifestyle choices which have caused their problems, and lots are quite aggressive, and bullying, and into their conspiracy theories, whereas the B12 group I am member of and this forum are just full of lovely, mild mannered, kind and helpful people! What a difference this B12d issue brings us: I feel it has a much greater impact on us all as individuals than even more potentially deadly things do - and maybe we are muted by its effects long, long before any clinical problems show up?
Thanks Wedgewood. Again I am fighting against “tunnel vision.” Though lovely people, many of these forum members have had terrible experiences with kidney stones. I had an OATS test in 2017, and though I had many deficiencies (which the dietician ignored) all she addressed was high oxalates. I still don’t eat many high oxalate foods but with their “oxalate dumping” theory, every little ache, pain, lump, or bump is dumping for them. I have tried over the years to suggest many of these things aren’t oxalate dumping. They pretty much ignore such an idea. So I turned to this group immediately so I would not worry about my injections. There are two people on this forum who are treated as gurus, so challenging the guru is not acceptable. When I spoke up with contradictions in my experience and links to the opposite line of thinking, no one even dialogued about it.
I am a bit of a pariah when I bring up opposing views. It’s interesting, though, the other day I asked something about a food considered high oxalate (that I eat) and two people privately messaged me. It was as though they didn’t want to admit, publicly, that they, too, don’t strictly adhere to low oxalate diet.
Thanks for your input. I hope all those who responded see this post (so I don’t need to explain my angst again!) but I am grateful for the reassurance I have received. Time for a shot!
I actually get a lot of good ideas and support on this forum but it strays from oxalates a good portion of the time. It is a good resource for “general” health questions and concerns though I never take anything as gospel truth without doing my own research. The group just steers me to things to consider so it’s not all bad as long as I stay quiet about the oxalate dumping thing.
This paper is referring to cyanokit, which is an IV of 5 to 10 grams of hydroxo over a period of 30 to 60 minutes or so. This is equivalent to 5000injections of B12 in 1 hour given intraveneously. It is already known that this massive dose can indeed cause problems in some people - the info leaflet for cyanokit has a long side effects list that normal B12 ampoules do not have. So this paper is not surprising. But it does not apply to us.
We have heard that some people may need to be careful with high doses if they have kidney issues, but again we are not talking about cyanokit level issues.
Practically I didn't know about this oxalate mechanism but at the frequency you are injecting, and if you have no kidney issues, I would not worry at all.
I have been injecting 4 mg a day every day for over 6 years, (some days more when i had covid or ill), and all my kidney, liver, and other organ markers are better than they have ever been.
Discontinuing injections was not even a consideration for me. I was just unnerved by the staunch and quick acceptance of the idea. I ALWAYS make decisions for myself. Sometimes I just pretend I am going to follow doctors’ orders but I seldom do. (If it involves pharmaceuticals)
LOL I know what you mean about doctor's orders. My most recent act of rebellion was not taking PPIs and not saying anything... my GI doc loves to give them out even though i've explained a million times they mess up my digestion.
I have Barrett’s esophagus, diagnosed 8!years again. Standard treatment is PPI’s. (I had taken some 15 years or so prior) Instead of taking PPI’s I cut out ((sadly, but necessary) acidic foods, caffeine etc.) 8 years later there has been no progression in the esophagus problem. Despite an endoscopy every 2-3 years to be cautious the docs ALL are aghast that I don’t take PPI’s.
I guess my charts all say “non-compliant” on them. I explain to them, that for the most part, I go for diagnosis/necessary bloodwork and that I prefer to try the least invasive path possible. I seldom look back.
Cyanokit is, as far as I'm aware, a last ditch rescue treatment for suspected cyanide poisoning. It's an unusual situation, and frankly I'd be very happy for someone to give me cyanokit if I'd been exposed to excessive cyanide, and I'd thank them for it if I survived. Time is of the essence. Don't argue with cyanide, as you don't have time.
This has little, if anything, to do with folks deficient from B12. The hydroxocobalamin reacts with cyanide to form cyanocobalamin, and therefore detoxifies cyanide. Personally, I wouldn't get excited about oxalate. Excessive consumption of rhubarb might cause oxalate issues...
Interesting because I had anaphylaxis to cyanocobalamin (IV) but do fine with hydroxy though it was hard to convince my doctors not to give me cyano...as though I made up my reaction after which they pushed a ton of benadryl into me.
Generally, an IM injection is preferred, as the chances of anaphylaxis is less. Wondering who gave cyanocobalamin as an IV? Also, it appears that people believe that anaphylaxis due to cyanocobalamin is possibly due to impurities during the manufacturing process. Wondering since I inject cyanocobalamin SC daily at home...
This was years ago. I was at a center that focused on fibromyalgia. They gave me a vitamin infusion. I had an immediate anaphylactic reaction. They told me it was from the B12. I had a similar reaction to a cyano-injection (I think a large dose) previously. I have just decided I wasn't taking my chances...
Anaphylaxis is too dangerous to risk it. I assume that the first episode you are talking about was an IM injection. Obviously, you are sensitive to a cyanocobalamin injection, although orals that give you much smaller amounts at a time and are absorbed over much longer periods are probably fine.
Total Nonsense. I could give a longer, more in depth answer but that basically sums it up.
The paper is an extreme case of critically ill patients with burn injuries and severe dehydration. It involves Cyanokit, as Jade mentioned, a huge dosage delivered by IV which no one treating B12 deficiency will approach, probably not even Wiscguy 😁. It has no generalizability to the general population. A link to back pain in an otherwise (relatively) healthy person seems .... tortured. The extreme dehydration is key to stone formation here and is not going to have the same effect in someone not in such a condition.
Oxalate scares are pretty common in the low carb, carnivore and alternative health communities. Usually overblown unless you're doing something like juicing large quantities of spinach on the regular (don't do that though),
"Oxalate dumping is the unfounded theory that oxalate in cells will be “dumped” from your body when you start following a low oxalate diet. This theory suggests that oxalate has been building up in your body and will be “flushed” out once oxalate is removed from your diet. Advocates of oxalate dumping often suggest that oxalate should be slowly reduced in your diet to prevent them from getting “dumped” out of your body all at once.
Oxalate dumping is commonly discussed in communities that suggest oxalate is “toxic” and everyone should follow a low oxalate diet."
"no studies have been published to support oxalate dumping or that oxalate in food can cause these symptoms."
I look forward to watching the videos you sent Technoid. I have often wondered what nephrologists say on the issue. I suspect there are two "camps" even among kidney docs on this though. I have a friend who has at least yearly kidney stone hospitalizations and when I mentioned considering lowering his oxalate intake, he said his urologist and nephrologist had never mentioned oxalates. Surely high oxalates have some impact for SOME people as there are 24 hour urine oxalate tests for some reason? The whole dumping thing has flummoxed me for years though. Every single thing that happens to one's body and even brain is listed under oxalate dumping symptoms. I have lowered my intake as I used to be a "juicer" which can cause oxalates to soar but I haven't lowered my oxalates anywhere near the oxalate fear-monger level. it is very hard to eat well when worried about oxalates especially green veggies and nuts and sweet potatoes.
Well firstly, as covered in the interview, there are several types of kidney stones, 80% are calcium oxalate stones, 10% are calcium phosphate, the rest are uric acid stones and rarer stones (cysteine and struvite).
Not sure which type your friend is suffering from but if they are not oxalate stones that could be a reason why his urologist and nephrologist never mentioned oxalates.
I'm not saying that oxalate intake doesnt matter at all, you can certainly run into problems regularly juicing large amounts of spinach for example.
The risk factors for stone formation include:
overweight, diabetes, high blood pressure, low calcium intake, high dose Vitamin C supplementation, dehydration, high fructose consumption (via carbonated sugary drinks for example - not from whole foods), high sodium intake, low fruit/veg consumption. high animal food consumption, long periods without urination.
The nephrologist does talk about "stone formers" (in fact he refers to himself as one) and there are genetic issues which can predispose one to stone formation. And there are rare genetic conditions resulting in primary hyperoxaluria (described in the talk)
If any of the above apply to your friend, that may be a clue.
Very high oxalate consumption is a possible contribution to stone formation but only if you are regularly eating large amounts of highly concentrated oxalate sources (like spinach, chard, beet greens, rhubarb, sweet potato) and concentrating the oxalates further by juicing them for example. The nephrologist gives an example of a guy who ate a jar of peanut butter every day. So yeah, generally eat sensibly 🤣
Its fine to eat spinach and other high oxalate greens, but ideally should be cooked first (blanching and 2 mins at high heat in a pan is enough) to reduce the oxalate content and rotate it with lower oxalate sources like Kale or Bok Choi. In a healthy microbiome there is oxalobacter, a gut bug which eats oxalate for breakfast. A good friend to have working with you down there!
Avoiding dehydration and maintaining an adequate calcium intake seem to be the most important factors to avoiding stone formation. Keep eating the green veggies, handful of nuts a day and sweet potato, all very healthy foods in moderate, sensible amounts. Ignore the scaremongering.
You nailed it! Sally Norton is oft-cited on this forum. I am well familiar with her work.
Another tenet of this group is that vitamin C makes oxalate and it should be kept to 250 mg./day. I tend to have problem with citrus (histamine) but I do try to get vitamin C in other foods and ignore this dogma as well.
Truly, I don't mean to debase this group. There are lovely people who are willing to share in this forum and many have reached out to me privately, when they were concerned about me. I just get really frustrated by their tunnel vision and also that they kind of dismiss some members (myself) and cling to whatever the gurus say. It is not a balanced dialogue at all.
Literally, though, members claims they have things like "crystals" coming out of their eyes. I just don't say anything...
Honestly I participate because there are truly some members I am fond of and I can go to this group with a problem with almost anything and I get tons of suggestions/ideas that are not pharmaceutical to try.
Once in a while, I throw my B12 deficiency knowledge out there but it is largely ignored.
If your obsessed with hammers then you start to see nails everywhere. Humans can be deeply irrational beings especially when operating in groups and not following classical liberal structures of thought like evidence, open to change, freedom of expression.....
I know you don't do this but it would be very unwise to restrict dietary Vitamin C. This is nutritionism gone badly wrong. Supplementary Vitamin C is useless at low doses and potentially harmful at high doses (it can contribute to stone formation) but dietary vitamin C has never shown any evidence of harm, in fact, quite the opposite.
I'm sure there are nice people on that forum, and that they sincerely want to help and provide good advice. But, as Gil Carvalho memorably said, you can be 100% sincere and 100% wrong.
Sorry to keep picking your brain Technoid, but while we're on this topic, another "scare" on this forum is vitamin A intake. It is really demonized. I always knew Vitamin A could be toxic but there is controversy over beta-carotene vs. the other form (?) I used to eat winter squash twice/day (just 1/2 c. at a time) because of its great nutrients and fiber and I like it. I found out I was way over the RDA of vitamin A so I cut my squash intake to half. I am still over the RDA. I tried to read about it but the opinions were all over the place and I didn't understand the beta-carotene vs. the other form. Anyway, there are people who stay completely away from vitamin A. I have not adopted this tenet either but I do wonder if I should try to cut back my A some more as there is quite a bit of research on toxicity. I don't take a vitamin supplement so I don't get any any that way.
I suspect you have some thoughts on this, but if not, thanks for reading this. Yes, I try to get vitamin C from food but I developed an allergy to citrus and berries so I have to try and eat enough green stuff to get my C that way. I know I am deficient but not grossly. Supplementing Vitamin C makes me sick. Citrates? Histamine? I don't know. I have suffered lifelong allergies and am approaching 69 and seem to be acquiring more.
Much of the below info I am taking from the wonderful video by Medicosis Perfectionalis, linked below.
There are several types of Vitamin A:
* Beta-Carotene (pre-vitamin A, needs to be converted)
* Retinol
* Retinal
* Retinoic Acid
* Retinyl Palmitate (preformed Vitamin A)
Beta Carotene converts to Retinol, which converts to Retinal (requires Zinc), which converts to Retinoic Acid (requires Zinc).
Vitamin A is an anti-oxidant and is important for night vision. If you improve your beta-carotene intake you may notice an improvement in night vision or speed of adaptation to low light conditions (something I noticed when paying more attention to improving my intake). Its also important for (quoting from the Medicosis video linked below): cell division and growth, immune system function, bones and teeth, skin health, metabolism and reproduction. So a lot!
Consuming very large amounts of Beta-Carotene (more than 30mg a day for a long period) can result in hypercarotenemia in some people, a yellowish colouring of the skin. This condition is harmless and can be reversed by cutting Beta-Carotene intake to normal levels. Beta Carotene to Vitamin A conversion is controlled by the body so its almost impossible to get Hypervitaminosis A from too much Beta-Carotene. Thats a relief because Vitamin A toxicity can be serious!
Excess of pre-formed Vitamin A (Hypervitaminosis A) from supplements or diet, in contrast, is much more dangerous, with acute symptoms including Headache, Blurry Vision, Dizziness, Naisea and Vomiting. Chronic excess intake can result in increased risk of fractures, osteoporosis, weight loss, anorexia, nausea and vomiting. Gigantic preformed vitamin A doses, like from Polar Bear liver etc, if you somehow found and decided to eat that, can be fatal.
The Tolerable Upper Limit for vitamin A from retinol is 3,000 micrograms of preformed vitamin A.
You can get to excess Vitamin A intake by taking high dose preformed Vitamin A supplements (retinyl palmitate) or regularly eating liver at 3-4 times the RDA. Getting only twice the RDA of preformed Vitamin A in pregnancy can cause birth defects!
Ideas (including some things I do) to ensure adequate beta-carotene intake:
* Sip a ~35ml glass of carrot juice with breakfast
* Rotate cooked kale and spinach through the daily greens (despite being green rather than orange, they are high in beta-carotene)
* The highest Beta-Carotene sources are Pumpkin, Sweet Potato and Squash. Carrots are good too but, unless boiled (ew), not as concentrated as the other two. Have a serving or two of at least one of the four at least once a day.
* Eat Beta-Carotene with some source of fat to help absorption (olive oil, nuts, etc)
Check in Cronometer if still concerned about having too high or too low an intake.
There are genetic polymorphisms that may reduce Beta Carotene conversion efficiency.
"two common genetic polymorphisms of a gene were identified and were associated with a reduction in intestinal conversion of beta-carotene to vitamin A of approximately 32–69% in UK women "
from "Increased intake of beta-carotene as strategy to prevent vitamin A deficiency"
It is important to note that this effect was from high dose supplementation and NOT from food. In general, most evidence suggests that anti-oxidants like Vitamin E, Beta-Carotene/ Vitamin A and Vitamin C should not be supplemented but instead obtained from whole foods. The body maintains a balance of anti-oxidants and a massive excess of anti-oxidants are not a good thing and seem to reverse the normal effect - turning them into pro-oxidants which can cause damage. There are many good videos from Brad Stanfield a NZ GP, on this topic such as the one below :
If you are still worried about not getting enough it is possible to supplement either beta-carotene or preformed vitamin A - for Beta-Carotene I would not supplement over the RDA and for preformed Vitamin A, no more than 50% of the RDA (and ideally not at all).
Dr.Gregor has a succint quote on this topic in "How Not To Die":
"When you buy anti-oxidant supplements, you may be doling out money to live a shorter life. Save your cash and health by eating the real thing, food."
Medicosis Perfectionalis has a great video on Vitamin A:
One last thing - Vitamin A is a "vitamin". That means its vital for life. If you completely remove vitamin A and beta-carotene from your diet (which would be insane but since we're going there), you would suffer disability and unless you reversed course, eventual death. They're called vitamins for good reason. Permanent blindness occurs in children as a result of lack of vitamin A in childhood. I've heard of idiots on youtube who claim to completely avoid vitamin A, saying its "toxic". I recommend joining such persons only if permanent disability is a personal goal. Sorry if this comes off a bit blunt but the idea of avoiding a vitamin is extremely dangerous nonsense.
You may be interested in my post on the subject of "Doing Your Own Research" which contains much additional information on validating claims: healthunlocked.com/pasoc/po...
I have been meaning to thank you for this for over a week, Technoid. I watched the video Medicosis Perfectionalis. I agree. He sounds super informed and intelligent. That said, he spoke really fast so I found him a bit hard to follow, especially when trying to digest pretty technical concepts. I found your explanation easier. Not sure I completely understand BUT I have plugged my diet into Cronometer and I think I am doing okay, although when they break down micro-nutrients, I am not sure if Vitamin A is what they are measuring as vitamin A and beta-carotene are not the same thing...or I misunderstand that still! Nevertheless, I really appreciate the time you spent replying to my query.
Watching Medicosis requires a quick finger on the pause button to digest his stuff as he's somewhat of a firehose 😆 With regard to Cronometer, they do the beta-carotene to vitamin A conversion for you in the background so what you see as Vitamin A there is the total vitamin A including both direct Vitamin A and beta-carotene.
Thanks, Technoid. My vitamin A on Cronometer on an ordinary day is over the RDA by about 30% on an ordinary day. Is that something to be concerned about? It all comes from food. I cut out a lot a few years ago when this whole vitamin A thing came up, but honestly, I am not sure what I can cut out and not compromise other micros....I appreciate your time and input.
thats perfect. Being a little over the RDA is ideal. Don't cut out any more beta-carotene foods and please don't act on any advice from that other forum without checking if there is anything behind what they are saying first. There is no reason to keep beta-carotene intake low, in fact it is very healthy to have a good intake.
Vitamin A its possible to go overboard on but unless you're megadosing supplements of vitamin A and/or eating liver daily (neither of which I would recommend), then you're unlikely to run into trouble.
oh, I feel such relief. Yes, there are people on the other forum that subscribe to a low to no Vitamin A diet, but I don't think they understand the difference between beta-carotene and pro vitamin A. I am relieved because one of the foods I tolerate, and ups my A quite a bit is winter squash. I eat it every day. I would like to eat more sweet potato but they are very high in oxalate and I haven't quite gotten over the stern warnings I got about them when that dietician I saw zeroed in on my oxalates (ignoring a lot of other micro-nutrient red flags) and advised no more sweet potatoes. I think the winter squash is a good compromise.
I mentioned before I NEVER heed any advice without due diligence. The vitamin A topic comes up every once in a while. I try to ignore it. I will now rest easy with my 130% of RDA for vitamin A.
If your calcium intake is ok, you stay properly hydrated and dont do crazy things like eating an entire jar of peanut butter or juicing a kilo of spinach for breakfast then its unlikely you ever need to worry about oxalates. You can swap out the squash for sweet potato now and then, its an excellent and safe food despite what Sally Norton and these forum acolytes of hers would have you believe. Stick to the science and avoid the kooks.
They mean well. They are just a tad naive and don't wander far from their favorite cites or gurus. I have to bite my tongue a lot but I do get some good ideas to research.
I'm sure they mean well but if I can Gil Carvalho's line again:
"you can be 100% sincere and 100% wrong".
If I can make an analogy to conspiracy theory, with conspiracy theory, there's always another rabbit hole to follow. The question is whether its worth following the rabbit at all.
Filling the brain with more and more nonsensical, disproven, unscientific and irrational ideas doesn't improve the ability to make good decisions. And good, informed dietary decisions can be literally a matter of life and death.
It's most certainly not! I had severe back pain solved by b12. It was such that I constantly had to take mild pain killers 24/7. B12 got me pain free after 2 years of injections. I'm not saying this will happen in every situation but b12 is needed for cell generation and when the cells can't regenerate the spine degrades. I wouldn't listen to them. Seems like you have already proved your own opinion. I still inject daily and am pain free despite backpacking 50+ miles. No pain killers.
I hear 'ya. Unfortunately, I suspect my B12 deficiency went untreated far too long, and during that time my back/spine problems got progressively worse. I was not B literate at the time, and though no one had a good answer for me when I said "should I be worried that my B12 is over 2000 and I don't supplement? Well, a decade later, I asked a different functional medicine doctor to do some different tests and bingo...severe deficiency. I fear I did irreparable damage to my spine but perhaps, at the very least, I am preventing the rapid decline in function and increase in pain. You certainly suffered long enough to know how life-changing severe back pain is. I can' t tolerate anything but heat and ice for the pain so I just try to accept it, eat as well as I can, inject B12 and walk an hour/day. Backpacking 50 miles without pain? Amazing even with a good back.
well i hope you get there. I went half a decade untreated. I hope there is hope for you. I never would have imagined that I would have the recovery that I have. Your mile a day will significantly help. I would stay at that 1 mile until you really get feeling better.
I actually walk almost an hour a day, but not that fast. About 1.7-2 miles. Do you think that is too much? My back actually hurts less after I walk, although I would do better walking twice a day for 30 minutes than an hour at a time. It's hard to get myself to do it twice a day, though, so I grit my teeth and push through the hour. I have been doing this forever, though I picked up the length of my walk just a few years ago...about the time I started injecting, in fact.
nah. if it isn't causing you to get worse, then it's making you better. I believe activity helps process that b12 we inject as well as other things. So good to hear you can do that!
Thanks so much for asking this question! I am in the same group you're talking about, and when I read about the B12 causing problems with oxalates it really discouraged me. My B12 injections are the one thing that seems to keep me going, and to have to give them up would be devastating to me. I too like and respect many members of that group, but find some of the posts way over the top. Personally my kidney stone journey started after being diagnosed with Celiac and eating a ton of almond and cashew bread, along with other nuts. My biggest problem however has always been not drinking enough water! Very simple, but oh so important. I do wish that group could be as helpful as this one. Thanks to all of you here 🙂
clivealive has been doing injections for 50 years. I wonder what they would say to that. lol.
i'm not saying their info is completely invalid but for those of us that have a b12 deficiency, esp as severe as some or most of us here, we would slowly die, literally without it. It's a deadly deficiency being it is responsible for b12 deficiency and I eat a lot of meat; thus, I apparently do not process the b12 orally at all.
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